Oh-kay take a deep breath!

Tomorrow is my birthday. :-< That means my daughter was supposed to make fun of me for being able to use the discount menu at IHOP. Well HA! I guess now she will never get to do that.

That will be my final revenge.

It took a lot of courage to type that too.

I am wearing her favorite sweater. It no longer smells like her because I have worn it too much- it smells like me now. I don't want it to smell like me. I find a pair of pajama bottoms and am relieved to find it smells like her.

How do I package it? It is not a tangible thing.

Facebook

No. I did not unfriend you on Facebook. I would never do that! I closed my Facebook account because I did not like the new privacy settings. =(

Shingle Bells, Shingle Bells...

Shingle all the way...!

The pain patch remains un-authorized. At this rate it will be New Year's before I have the pain patch. HA! *pops in another pill*

It is a little hard to enter debit card numbers online while under the influence of opiates. Websites want the three-digit security code. After that comes your cell number. Wait. How do I type numbers? They confuse me on a laptop! You have to hold the shift key down. There's no numerical keypad. They also want your address but the address verification system always balks. Things are difficult when one is drugged and on a laptop.

This is too hard. Can we do Christmas next year?

I need a sharpie

...so I can connect the dots to all my poxes. Of course it would pretty much be a straight line to no where!

And NO...Medicaid has not responded to the pre-authorization of my prescription for pain relief. Why am I not surprised? Pain relief is not a priority unless you are a Congressman then they get lots and lots of pain relief. Plus free mail service!

I will have to call the doctor today and redo the pain prescription but that also means getting to Walgreens somehow....and I am flying high already on Mom's medicine. Yes I know. Not legal it says on the bottle but hey I have SHINGLES and it hurts. Those pain faces at the doctors office do not work here.

Can you tell I am grumpy? I have Christmas shopping to do. I have not bought one thing!!! I have no idea what to buy and I feel poxie. RATS. Just...rats!

I could shop online if I knew where to click-click.

SHINGLES!!!

I was complaining every now and then to Mom and Alex about some odd pain under my left arm and breast area. *ahem* I will not discuss THAT area again.

Things were burning, stinging, itching, and it felt very much like severe nerve pain. Everything hurt. The left side of my face was quirky as well. My vision was off. My taste buds were not right. I had a low-grade headache and I felt like crap.

I do have Multiple Sclerosis don't I? So I kept my mouth shut.

Monday morning I hopped in the shower and there it was. A row of pox! What????

I couldn't go to the Doctor till today because well, it was too freakin' cold and snowy.

I have Shingles. He wanted to treat it aggressively cuz he was afraid I'd get some sort of pain syndrome so he prescribed a pain patch and an antiviral medication. I am wrapped up in an ace bandage. I was told to expect more blisters for the next one to two weeks.

Well guess what. Medicaid won't pay for the pain patch without prior authorization even though I have a prescription. Wait...isn't a prescription a prior authorization? No? Shingles is one of those "right now" conditions.

I sit and wait...for pain relief.

A good memory

Nicole and Quill are in my parents swimming pool pretending to be Shamus.

I am using the present tense because that is how I like to think of them since they both us left this summer. As far as I know they are still in the pool. =)

I look at that picture and they look so close when it is blown up on my screen. I want to reach in and grab them back but of course they are only pixels.

While I'm thinking about it, you can never have too many photos of your loved ones. So snap, snap while you're at it. You will not regret it.

Take a look at http://www.arrangingshoes.com/ and listen to Dr. Jill Taylor's video. It is 18 minutes long. There is a transcript of the video at http://blog.ted.com/2008/03/jill_bolte_tayl.php if you would rather read it but I'd suggest watching the video for a more authentic feel.

After viewing that video I was reminded of the time my mother had her "other world" experience when I was 17 years old. It was identical to Dr. Taylor's. Mom was at the dentist under sedation when she suddenly went swooshing down the "tunnel".

All I know is this video made me feel better for whatever reason and I hope you enjoy the video from arrangingshoes.com's blog as much as I did.

Christmas shopping

How do you Christmas shop when it is snowy and icy?

How do you Christmas shop when you have no idea what to get anyone? I don't have many people to shop for but they are important people.

How do you get in the mood?

I think that is the key...the mood. I am not in the mood for any kind of holiday.

It is cold outside

...but life is gradually becoming warmer thanks to the help of Alex and the electric blanket. Sunday morning got off to a rocky start as I was in tears over the whole concept of NEVER seeing my daughter again in the form I wanted to see her. I want to talk to her, hug her neck and smell her hair. And complain about my amazing ability to wash Burt's Bee's in my jeans every time!

Thinking about her is exquisitely painful; it can almost send me into a panic attack. Where is she? Is she okay? Why is she gone? And of course why me? Then again why not me for no one should have to endure something like this. No one. It is not right and trust me if there is someone to talk to when I "arrive" someplace I will have a long and hopefully a productive conversation over this issue.

It is wrong on so many levels. I learned nothing from this lesson. I simply don't understand this unnatural order of life and death. I was supposed to go first. NOT HER.

Back to Alex. He is here for me. It takes someone special to get on this kind of path and stay on it. He makes me laugh a lot and I know Nicole would like that.

Alex asks me how I like this or that cooked; I finally told him something my father taught me. You didn't get to treat home like a restaurant and order off the menu so keep your mouth shut while mom is cooking! I cannot "order" from the Chef. He gets to choose.

Last night I had the best steak I swear I've ever had in my life hands down and I don't know how he did it but it happened in front of me and it looked so easy too.

I also discovered the on/off button on the electric blanket. =) Really nice when it's very, very cold in Black Forest.

My friend, Karen

My long-term girlfriend sent me two boxes of clothes for winter. WOW. She sent me a bunch of clothes for summer as well. I was stunned when they arrived! Never have I seen such a wide variety of clothes!

Karen and I go back quite a ways. We attended the deaf residential school back in Texas together and have been friends ever since. Our kids are almost the same age. Karen and Tiffany drove down from Dallas for Nicole's wake.

Some friendships are enduring no matter what the circumstances.

Goin' to the movies

Funny how going to the movies can lighten up a mood. I sure was in need of something.

I was in a very blue funk yesterday after Nicole's former boss recognized me at Hallmark. "How is Nicole", she asked? I mumbled something about her being fine and got the hell outta there. I was not prepared at all for that. Right before Alex picked me up last night for the movie, a song from my iPod came on. It was More than Words by Extreme- something that both of my kids used to sing at the top of their lungs (it's posted on my blog somewhere) and I immediately started crying. I greet him at the doors with tears. NICE. (not!)

I hate that kind of thing and I try to grieve privately but Hallmark likes to send their very best.

Hallmark is a place to avoid and I shall avoid for a long, long time too.

Back to the movie, I will admit- I am the first to say I am not normally a movie goer. I am deaf! Anyway I am learning a couple of things about going to the movies.

1.) It is more fun when you can smooch, hold hands and cuddle in the dark. Just because we are not teenagers does not mean we don't feel like teenagers. =) Neither of us have responsibilities at home so we are free to do what we please and we do!

2.) 3-d movies at IMAX really change the environment. The snowflakes made me feel cold at times, HA! The Christmas Story is really good- parts of it are a bit dark so little kiddos I'd leave them at home if you ask me.

Mom's third computer is driving me crazy. I see there is a registry conflict with Windows 7 and Creative Suite 3. Sigh. And I need to download a patch to upgrade Works 7 so I can upgrade the Microsoft Office. GEEZ. And where is the operating systems software? GRRRRR...... And despite my best efforts her computer will not find the printer network. I will not...will not take a hammer to the thing but can these things come not "as is"?

UPDATE:

The effin' computer will not, will not..install any software of any description. I am going to blow a gasket.....

Take three at
Best Buy will not go well.

Best Buy gets my wrath

It all started May 16th when Mom bought a desktop computer.

Things quickly fell apart. Both figuratively and literally. Mom's computer died (literally) when we were in Texas for Nicole's wake but we missed the 14-day window for Best Buy's return however they exchanged the computer since the motherboard went out and we were out of town for Nicole's wake.

Computer #2 was no better. The motherboard on that one went out too as well as the video card and it took off to California for repairs. This went on all summer...and has been going on until now. Mom has not had her computer at all.

When they called yesterday and said they were still working on it, I exploded because they told me they would overnight it and have it back right away. That was the week of Thanksgiving and we are now in December and good grief...the computer was bought in May and how long does she have to go without a working computer? The computer never left the store and "they" were trying to repair it. NO! They couldn't even boot the darn thing up.

I took off to Best Buy with all the service orders in tow. When the manager came- I thought well I will either be arrested or I will leave with a new computer for Mom! I was pissed. I told him that Mom had bought this computer in May and not once had it worked- they had replaced it twice, repaired it God knows how many times and I was tired of coming down to Best Buy and standing in the Geek Squad line and what was he going to do about it?

Actually- I have cleaned up my version of the story. =)

To make a long story short in less than five minutes I had a new computer for Mom. Thank God that nightmare is over.

A few well placed words and piercing stares will take you far and it really helps if you get the have the I have had enough look down!

Me at Best Buy

Merry Ho! Ho! Ho!

Santa's arriving in my checking account. =) Medicaid is now reimbursing me for my MEDICARE premiums! I can breathe....yes! That is a good feeling. I might even get to see what color a dollar bill is again on a regular basis! YES. YES. YES.

I slept till six am. My jaw is not as tight this morning. I will be able to get Andrew some Christmas presents without going on Extreme Budgeting: Zero Dollars. Wait- did I imagine that show?

Today is a good day.

Facelifts

One week from tomorrow it will be six months since Nicole died. My daughter was supposed to make fun of me like she always did. She was going to talk about all the new wrinkles and crinkles I had. Ya know...I will be able to take advantage of the IHOP senior citizen's discount now. I am turning 55 this month and yep, peeps I have earned every year finally!

My BF with MS and I once joked about running off to the spa and getting facelifts, browlifts, whateverlifts. What I'd really like is a lifelift for my life. Return my daughter, please. Those are the things that really matter.

She was supposed to turn 35. My mother turned 75.

The age timeline warped on us big time, what can I say.

Six months. Do we ever stop counting? I guess not. Her last breath still pains me when I allow it to float to mind. I know she saw us. Her brother, grandmother and I. Agony. Pure agony.

It finally happened!

Medicaid. Medicaid. Medicaid! I am now on Medicaid. Retroactive to July 10, 2009.

I was beginning to think the engine was running and nobody was driving up on Spruce Street. I put in my application on May 29th and it took until December 1st to get a supervisor's signature.

My grandmother from the piney woods of Louisiana would say "My father's child, what took you so long?"

I picked out my Medicare Plan D today

... and it took almost all day! Picking out a Plan D is like shopping on Black Friday. You don't know where the good deals are without a lot of comparison shopping and even then you are not quite sure at the end of the day.

Gap coverage. No gap coverage. Put in your drugs. Take out a drug, change the dosage, (yes- I have changed (cut back) recommended doses to save money and changed drugs to move from Tier 2 to Tier 1. And hope no one prescribes anything really crazy and not on your list of allowed drugs.

Sobering.

I never get the sense of fairness either.

On to another topic. Mom told me this morning she dreamed I won the Nobel Peace Prize this morning. I said for what???? She didn't know but I did show up with Obama to collect. How funny... and I was ten years old! That would be about 45 years ago!

Gini met her first rabbit yesterday. It appeared off the patio suddenly and Gini was as surprised as I was! What was it doing out of the zoo? She took chase but not as fast as I knew she could go. She stopped at the edge of the walk-out basement patio so she was all bark, no bite when it came to rabbits. Wuss.

Alex made the best evah..evah...grilled ham and cheese sandwich. I didn't know they could be improved on. He even asked how I liked it grilled. I didn't know there was an answer to such a question. I am still drooling. There is so much value in a culinary education that I kind of want to make it a constitutional amendment that men graduate from culinary school before being allowed to speak to women. =)

I cannot get warm. That is really annoying me too. I like cold weather too!!!

Giving THANKS

Thank you,
ALEX!

Thanksgiving was a success! I was worried the mood would be decidedly heavy with Nicole gone (it was both of my kids' favorite holiday) but it was not. The day was different enough to make new memories, new traditions and close enough to Thanksgivings of the past to feel connected to the day somehow. Alex taught Mom how to chop chop and we watched him cook and clean as you go. The apartment kitchen never did get dirty.

Andrew and Kallie joined us for dinner and I tell you....it was nice. =) Two kinds of stuffing and both were delish. The highlight for me was the gravy! I wanted to disappear with it and french bread for dipping! YES. Unfortunately it is all gone....maybe one day?

One of the biggest gifts he gave us was a startling revisit to the past. The way we used to do things. After the store was bought we no longer had time to set the table, put food in beautiful dishes, use our silver, our china. It became a time of paper plates, buffet style and pickup food. We females were the cooks and the bread winners as well.

Now Alex is reminding me of our traditions without even knowing it. I realize he's a Chef by training but still he is a gentleman too. He cooked the entire meal. Yes he did.

I see Andrew likes this. He looks relaxed and it feels like a family again. The next day Alex and I watched Some Like it Hot and you know what...this is good.

I am looking forward to the future.

What happened to Sesame Street?

Mom was watching the news and I was informed that Sesame Street blasted out Fox News and that Bill O'Reilly was going to blast back.

What happened to simply being a muppet?

Tinker Bell is here today!

Hello. I am the Happiness Fairy,
I've sprinkled happy dust on you.
So, smile dammit. This **** is expensive!

We can fly, yes we can!

Last night I had a dream. Tinker Bell met up with Peter Pan and at the end of my dream Peter Pan stole Tinker Bell's wings so she would never leave him. I woke up at four am thinking "What was that about???"

Gimme my wings back, you!

I read some Tinker Bell quotes yesterday (my mistake) but I didn't realize I had absorbed them like a dry sponge in a wet sink. My philosophy is a wet sponge is a very unhappy sponge; all sorts of odors, germs and unknown critters burst forth when you let it float with the dishes in the sink. Keep your sponge dry!

Back to Tinker Bell. She was flying from flower to flower trying to find an antidote to prevent the upcoming wing removal in my dream. Tinker Bell knew it was time to grow up and she had decided to leave Neverland and Peter Pan was not having any of that.

She burst into song at one point in my dream which was kind of odd since I am deaf and songs are not generally part of my dreams:

I am not a Barbie
My hands don't stick together
They have spaces so our hands
...can fit together

One of the things I really like about Alex is it is against his nature to remove wings from all Tinker Bells.

It took me almost a lifetime to figure out that my Tinker Bell wings are mine to do what I want with and I am entitled to leave Neverland where adult children do not want to grow up into mature adults.

Neverland is now in my rear view mirror.

I have MS, not the Swine Flu

I was diagnosed with hypophonia the other day. A visit to the ENT is in order but I still have to do my colonoscopy and I haven't figured out when to schedule it. Hypophonia is part of MS and a very bizarre disorder I should say!

It is truly hard to explain to someone what it feels like. Not quite a cough, not quite a respiratory disorder, not quite a swallowing disorder, not quite the MS hug- but feeling as if at times an elephant is sitting on your chest. People give me the "if you're sick why aren't you at home" look whenever I cough. The pharmacist asked if I had been vaccinated. Yes, right there at your pharmacy by another pharmacist!

I have MS, not the swine flu. Maybe I should get a t-shirt from Cafepress!

Onto another topic. Herrad posted a yummy recipe under "Stuffing" in the comments section. Take a look at it...it's for stuffing of course!

Alex is getting quite an education on MS faster than I'd like. The irony in this does not escape me. Stress is not good for MS. I know. What do you do when life is stressful and is also the drama queen?

He smiles though. All is well.

Food Network Channel

Yesterday Mom and I were down in the dumps so we turned on the Food Network Channel where we entertained ourselves by watching snobbery. I don't think that was her intention but it was mine.

Seeing the Iron Chef Judges give rave accolades on avocado sorbet served over raw buffalo had me giggling by the end of the show. I was reminded of the tulip story in Botany of Desire. Holland went crazy because someone had deemed the tulip a precious commodity. Little by little everyone took up this line of thinking/reasoning. Pretty soon the tulip bulb was selling for ridiculous amounts of money....think along the lines of a Manhattan townhome for one tulip bulb!

I am sure there were people at that time who probably thought the peony was a more beautiful flower and why was nobody paying attention to it?

Back to the food-I lost count after five courses and perhaps if you need so many courses you aren't feeding your guests enough bloody food.

I don't pig out but please.... one tiny rib per person? And if you're going to eat avocado sorbet over raw buffalo- wouldn't you want more than a mere teaspoon or does it really taste that bad?

Have a good day everyone. :)

Stuffing

Alex is cooking Thanksgiving dinner this year. There's only four of us and of course the stuffing question came up. Do you peeps realize how many variations there are to stuffing recipes? There's the cornbread stuffing I grew up on, the herb stuffing made with day-old bread, wild rice stuffing with sausage, and variations in between.

No one makes stuffing the same way, indeed I'd say we would be lucky if we made our traditional stuffing the same way every year too. What I remember is Mom, Nanno, Nicole and I taste-testing our way thru the stuffing mess and adding (but you can't subtract) ingredients we deem worthy. Some years the stuffing was a deadly hue of sage-green, other years it was a normal stuffing color but it was always good. One year we pretended it was better than it was and no one said anything; we merely added more gravy and cranberry sauce.

There were never too many opinions for stuffing. Especially when it came to the onions. Nicole, Nanno and I liked the onions chopped up fine and in uniform pieces. Mom threw big onion-y uneven chunks in there and we'd pick them out and re-chop them. Nicole would try to keep the pecans out of the stuffing. Those are the memories stuffing is made of. Stuffing is made with love and many hands. Everyone sneaks something into the mixture or tries to keep something out. Even my dad had a role; his job was to make all the cornbread prior to stuffing making time.

This year they are gone and I am thinking about the stuffing. I am worried it won't work this year, there won't be enough hands messing with the stuffing. It will not be fussed over with the same hands of love.

My family is small now and it will take some getting used to. Stuffing will be made with fewer hands but my son is not less loved.

Come Saturday morning...

I forgot all about the Sandpipers. Dory Previn co-wrote this song long ago. She is what one would consider extreme-angst. It's hard to find her music (heck it's hard to find HER) but I do have one of her CD's and a couple of LP's from my high school days. I am not into angst-y music now, my life is enough. I seek out music that is more uplifting, more hopeful. I seek solace, hope and good tidings.

But this song reminds me of Saturdays long gone by. Christmas is coming and the usual family chaos is missing. Today is Saturday and I was trying to remember the last time Nicole and I went Christmas shopping and I cannot remember...last year's Christmas is a blur as well. I can remember shopping for her robe. I bought two from Macy's. A white one for her and a purple one for me. Both robes now hang in my closet. Mine is very worn, hers not so much.

I don't want to take out the Christmas stuff. Her stocking is in the mess as well as all her childhood Christmas ornaments. I have another child who needs his Christmas too so I have to find a way through this but I don't know how yet. Thanksgiving will be hard enough as it is both of my children's favorite holiday. It always has been. Family, food and naps!

This year only four of us will be at the table- my son, mom, Alex and I. But I will count my blessings and thank God I have them.

Medical MJ

Colorado (especially Colorado Springs) is engaged in a heavy medical mj debate. Our local district attorney has decided against the wishes of the voters of Colorado to bother the heck out of everyone. Ya know? He is doing things like imposing taxes on medical mj (we don't tax medications, do we?) and other crazy things. He is getting out of control...gosh.

I am going to be 55 years old. I not your typical medical mj user. If I had my way, I'd make my way to Walgreen's and stand in line with my prescription D card and watch myself fall in and out of donut holes. But there is not anything else that works so what do you want me to do? Suffer? NO.

I can't afford to buy the stuff so my kindly caretaker grows it for me....free. Yes, free. How about that. The medical mj community looks after each other unlike the drug dealers who seek to make a huge profit.

I wonder how many people who use vicoden would freely give their stash away.

The post office needs a bail out?

Didn't I talk yesterday about the post office?

http://www.cbsnews.com/stories/2009/11/19/politics/main5711797.shtml

Are you sure you want our government in health care?

We need more of us in the middle of the peninsula with waves lapping at the left and the right instead of a tsunami coming at all fronts. United we stand, divided we fall.

Already I see a difference in my standard of health care with Medicare vs private insurance sooooo no, I am not thrilled to be on this one-way path. If Congress would vote to put themselves on it along with me I'd feel better. If it's good enough for me it should be good enough for them.

I am concerned.

It is ...

1:15 pm and I haven't figured out where to give myself the shot. HA! I am eyeballing a small area on the left of my right thigh but owie.... and I really want to get it done. :->

If I don't come back today and complain I didn't take my shot then I accomplished something!

Health care?

First of all- I believe all people should have health care. Period. Now how to pay for it is another issue and one I do not pretend to have the answers so do not ask...it is not my field of expertise. I do know that our government has never been successful with any program they have. Look at social security, medicare, medicaid, the postal service, yadda, yadda you name it but will you happily claim it as one of our country's personal success stories? I didn't think so.

I would love to see the post office be turned over to private enterprise. You know UPS and FedEX would put the USPS to shame with their innovative delivery services. Chances are we'd get our mail on time, delivered to the right address and why- maybe even cheaper! Customized mail packages, Monday-Friday deliveries only or 7-days a week might be offered. Businesses potentially would want multiple deliveries during the day. The possibilities are unlimited. BUT not if it's run by the government! NO! NO! NO! We are not innovative when we are government people... haven't we figured that out by now?

I used to have private insurance. Good insurance. Now I'm on Medicare and yes I see a different standard of care and it is quite scary.... doctors actually change their medications, procedures and treatment plans because you are on Medicare. My Neuro wanted to put me on a different medication yesterday. She couldn't do it because 1.) I couldn't pay for it out of pocket 2.) Medicare wouldn't pay for it so she picked a less favorable drug.

Who is in charge of my health, Medicare or my doctor?

I try not to throw UGG boots at the TV when "health care reform" comes up because my application has been sitting in the Department of Human Services since May 29th and Thanksgiving is next week. I was approved July 10th. Yes...July 10th.

All I need is a Supervisor's signature.

In the meantime I struggle with Medicare premiums and wonder if it would be better to go uninsured like my son who gets medical care from Peak Vista free- and gets $3 scripts!

A scary thought indeed.

Medicaid is driving me crazy

I put in a call to the technician . Do they not realize my application has been sitting on their desk since May 29th? I cannot afford Medicare, people! I have been approved but I need a final signature. The premiums are retroactive but do I need to get a bailout to keep me going? And, and, and.... the waiver comes with a personal assistant.

But how do you make a personal assistant retroactive?

Paging Dr. House

Today I saw the Neuro. She says I have dysarthria or rather hypophonia. It's the same thing I guess. At times it feels like a respiratory issue, other times it feels like weak vocal cords. Yet it is the same problem she said.

I have noticed a change in my eating patterns. I am cutting my food in smaller pieces. It looks so silly!!! Little bitty pieces, as if I am two years old. Drives me crazy too. I'd rather shovel it in like everyone else...HA!

I am to make an appt with the ENT. Oh yeah, I canceled my appt for the colonoscopy so that has to be rescheduled for .....I don't know when but I better get it done before Congress takes that benefit away. :-< They are sure on a roll!

My Neuro had to think for a bit before writing out my scripts since Medicare had cut out some more scripts. She had to figure out what was covered under Plan D. I am wondering if they are already rationing health care. She could not write me a script for what she wanted...she wrote me a script for what Medicare would pay for. Now that bothers me.

OH! I am not happy about the "new mammogram recommendations". Let's see. Breast cancer rates dropped, so did deaths and d'oh...did anyone connect those dots? No? Women under 40 can and do get breast cancer. Get your puppies checked out or the whole world will be dyed pink!!!

I want a shot break.

I have a new problem. I am antsy again about my injections. I am running out of real estate. I won't go down my thighs. My belly is being overused...my arms don't handle the welts well. The whole thing sort of feeds upon itself- I need to get into the habit of rotating sites but I forget to write it down in my calendar. I forget exactly where I was injecting yesterday but I know where it all hurts. EVERYWHERE! I have lumps galore. Little robin eggs everywhere...ready to hatch and take off!

I injected a mite too high today in my belly in desperation and ouch! Don't try it at home!

I wanna have a shot break....but I don't think it's allowed. Sigh.

My son

My son shared a bit of good news with me Saturday. Despite all the crazy upheavals he is graduating with his AA in May and starting on his four year degree. He was also invited to give a speech in Denmark next spring. Wow. Can I go as his mother? Wait- I am his mother! For some reason I think that should entitle me to a free ticket.

I am proud of him for not getting seriously derailed no matter how hard things became. It was really a difficult road we were on too. We are still plodding along but it is getting better, peeps. One day at a time.

My weekend was once again relaxing. Football, snow and pork chops cooked to perfection. PERFECTION. I can see the value of a culinary education... =)

It bit

....off a piece of myelin. The pacman goblins are swarming all over my brain and spinal cord leaving bits and pieces of damage everywhere. My previous swallowing problem has returned. My right leg is weak. Niceeeeeee...... I did get in some high-quality R&R, otherwise I'd be on a spinning top.

I will not go on steroids so I don't know what there is to do except figure out if I'm to proceed with my scheduled colonoscopy on the 17th.

I live with my Mother and she is not doing well. :-< Medicaid needs to waive me onto my waiver so I can take advantage of the "maid services" that come with the said waiver. That is...if I can find room for her to move around in since Nicole's apartment keeps moving into mine.

I have been keeping my mind off things by taking working on my postcard blog. Take a look at http://postcardsofmylife.blogspot.com/

Happy birthday Nicole

Forever 34

I used to play leap frog

And eat homemade ice cream. Catch lightening bugs cuz it was fun. Had a playhouse behind my grandparents house. Climbed trees. Life was carefree. Living on Robinhood Lane in a neighborhood called Sherwood Forest triggered a secret love affair with Robin Hood and Lady Marian. Nobody knew but me and the local library.

I am sorry if at times my blog seems like it's a blog about death and dying. It's not. It is about Living Single with MS because this is my life as a single woman right now.

I don't like it at all but you can't hurry grief.

Remember The Lion King Song?

...from The Lion King? Circle of Life? I believe it was nominated (I am too lazy to google, sorry) for best song in the 1990's but I am not a betting woman anymore. Every one of my bets went bad.

My son Andrew was very into The Lion King back in the early 90's. His whole bedroom was done in The Lion King theme. Sheets, pillowcases, posters, you name it he had it. The Lion King ruled! The Simpsons came after lovable/un-lovable Homer and who can forget "Bart, with $10,000 we’d be millionaires! We could buy all kinds of useful things like…love!"

Now Marge is posing in Playboy. Call me lost on a mobius strip.

I was thinking about that song, this thing called the "Circle of Life" and the mobius strip. Walking the mobius strip would make one disoriented when trying to get from Point A to Point B. The "Circle of Life" paralyzes me with its brutality at times. We know matter cannot be created or destroyed, it only changes form. I am talking about birth and death here.

Older circles are supposed to pop before
younger circles in my world.

I am thinking too much about circles and mobius strips. Life is a circled beginning, I've discovered and we're always walking on mobius strips so you might as well keep moving. Well dammit- obstacles keep appearing.

Here are the lyrics for the deaf:

Circle of Life

From the day we arrive on the planet
And blinking, step into the sun
There's more to see than can ever be seen
More to do than can ever be done
There's far too much to take in here
More to find than can ever be found
But the sun rolling high
Through the sapphire sky
Keeps great and small on the endless round

It's the Circle of Life
And it moves us all
Through despair and hope
Through faith and love
Till we find our place
On the path unwinding
In the Circle
The Circle of Life

It's the Circle of Life
And it moves us all
Through despair and hope
Through faith and love
Till we find our place
On the path unwinding
In the Circle
The Circle of Life

The apple, the tulip, mj and the potato

Did you know there is a two hour program AND a book covering those four plants? And only those four plants? It's The Botany of Desire.

Now, now, now...don't let your minds go there. It's not about sexual desire. =) There's plenty of information on the internet for that.

A suggestion: it's better to figure it out yourself or you'll end up on a seedy path to nowhere as the internet is like the wild west. Be careful where you click-click or you'll end up some place dark and unsavory- you'll fall like Humpty Dumpty and all the King's horses and for sure the King's woman will abandon you.

I also found out that:

1.) The apple, if you plant all the seeds from one apple- each seed will grow into a different strain of apple tree. To remain faithful to the strain one must graft.

2.) The tulip - caused a financial crash back in the 1600's, with artificially inflated prices for the bulbs. Yes. Goes to show that even if you buy something for $100,000 as an investment there might not always be a buyer for $200,000. Investments are always risky.

Beware of overinflated tulips bulbs lurking underneath the soil metaphorically speaking.

3.) Medical MJ- the part that's the bud that those of us with pain and spasms use was described as a bunch of sex-crazed female flowers desperately seeking male pollen. *giggle*

Intoxication is not my goal. Intoxication is an unfortunate side effect I think. I like my two feet firmly planted on the ground but I do like pain relief. Wouldn't you?

4.) The potato - if you saw the show you would think twice about eating potatoes due to the thick coating of pesticides on the leaves. Our mass production techniques are no match for the beetles.

In summary, the show broke down these four plants into the following groups:

Apple: desire for sweetness
Tulip: desire for beauty
MJ: desire for intoxication (their description, not mine)
Potato: desire for power

...and that's all, she said.

Four wheelin' is good medicine

Today was the first time my Big Girl Wheels had been out 4-wheelin'.

She's still covered in mud and quite proud of it.

The expressly customized Colorado facial will do her good. We slightly-used but still good to go girls like our facials.

All the carbon build-up can't be good for her pores n' pistons, no.

Give me Liberty or give me mud flaps!

My belly hurts. My stomach muscles and rib cage hurt. It is because today I laughed a lot! More than I have in a long time.... :->

Alex and I, along with the daschie Gini went up to Cripple Creek, (no gambling; only popcorn and a potty break!) headed towards Victor and then went 4-wheelin' thru Phantom Canyon.

Oh my....

I know how you feel
when you reflect back, cow.

I intended to take a "posed picture" of the said cow but there was another car coming the other direction so Alex said for me to take the shot and there was no time to fiddle with menu options. So I snapped.

I think it came out almost perfect, down to the cow's expression. Humor, reflection, with a tinge of sadness. I won't ever accept the fact Nicole died. That is not possible but I can say that it is the way it is and I have to deal with it. These are my words; it makes sense to me and does not have to make sense to any one else. This is my way of finding peace with losing her. It takes time.

Her birthday is Saturday.


Life reminds me of this photo; along the way many bumpy mistakes are made but the road is always ahead. Sometimes it is a tunnel and sometimes it is a road. Sometimes you cannot see in the tunnel but you keep going because well you know what happens when you stay in tunnels. You turn into an albino rat...one of those varmits. Anyway. These are the kind of things that go on in my head as I look out the window. My head is quite noisy with thoughts like this; on all kinds of topics actually but most people do not know that. I guess the ones that read my blog will know now. LOL. By the way they're not always dark, morbid noises either. I happened to be in the tunnel and it was fitting. Geez..I'm feeling a little claustrophobic or is defensive the word I'm looking for? HA!

I also wonder who decides to place this road here. Right here. This spot. Why not over there? I only ask cuz there were a few places I saw that appeared to be less problematic but as I have learned-especially in a year, nothing is ever what appears. There are always secrets and reasons for things. Some things in life make sense, some things don't. That is how it is. The more you fight it the unhappier you are.

Here is a guaranteed hole in one

for really bad golfers.
Even a banana shot will do.

I have nothing truly profound to say about the hole except you wonder....doesn't the State of Colorado worry about people falling into the hole, LOL...yes it is big and yes you can't imagine anyone falling the hole but there were footprints around the hole if you'll notice in the photo. Is anyone missing in Colorado today? If so, maybe someone should take a look here first. LOL.

I am just the type of person to...
fall into the hole!! =)

By the way Gini was a brat. She whined all day. I mean all...day. Then when we got back she jumped back into her crate. WHAT? She was ready to go again after all the whining we had to put up with. I am feeling guilty tho, I meant to get her poop up at Chili's in Canon City but forgot to get napkins after eating so if anyone steps in her mess I am so sorree.....I always pick up! :-<

Oh yeah, after leaving the very wonderful Phantom Canyon we ended up in Canon City where I ate Cheesecake (Katy bar the door, Simvastatin's after me!) for lunch. Who wanted a hamburger (oh I did last night and had one toooo, Red Robin, wooo hooo) when Cheesecake could be had?

Some very funny conversations took place too. One involved MS education. You know MS can have an embarrassing array of symptoms. It comes loaded with all kinds of problems especially when it comes to bladders and bowels. "Come on, tell me" he gently nudges with a smile. And you know he means it too. He has already been knocked into a cocked hat with everything I've thrown at him so what's a bladder problem? Well...it's not a problem as long as we're talking about MS in general (or other people with MS) but when you're talking about MY bladder well gee whiz can I pose for Playboy without a ton of airbrushing? NO, NO, NO!....oh, NO!

Not for a million dollars. Or even a billion. I played the "Indecent Proposal" game long ago and I said "No" to the million dollar question and still abide by my answer. Okay that was a wild change of topic!

I tell him all about my bladder problems. Even told him I came home the other day and WHOOPS, I didn't make it to the bathroom in time. And no it wasn't because my bladder was full, it was because my bladder had to step up and say "Sherry went to Starbucks and we know there's lots of caffeine in her bladder so let's make a messy surprise!" and where was Depends? Did I say just say DEPENDS???

I don't need Depends. I need Vesicare but the Medicare doesn't pay for it and of course the government knows more than my doctor does. Yes I know about the other drugs but I have already been down that road. I like the plumbing pipes guy for urgency/hesitancy problems.

I laughed a lot about all kinds of things actually so now my belly hurts. Some of it I won't tell you about either. HA!

This was the best weekend I have had in a long time.

Stuff I read today

A magazine on MS arrived and as I read through it a couple of things jumped out at me. One especially poignant clip: the section covering the personal highlights of the comedian Anthony Griffith who has MS. He said one of his personal highlights was "Being a father to my daughter, Brittany, who died of leukemia when she was 3 years old."

I think that is more of a personal strength when he words it like that.

On to another topic.

The handicap parking police were at it again. Those who use HC Parking that don't look disabled. What does that mean anyway? In this particular situation we are talking about MULTIPLE SCLEROSIS which never looks the same from person to person, ironically enough....gee whiz we forgot about that one factor didn't we?

If someone asked me if I had the right to use the space I'd give them my Neurologist's phone number. They can take it up with her. I don't have to meet a certain defined standard to get handicapped plates, I only have to meet my Neurologist's standards.

Yes there are people who are far worse off than I am. I am considerate of HC parking. I look around first. However I am not stupid and I am not going to park at the end of the lot when there are mountains of snow between Jeep and door...and I know a fall on my arse can result in a trip to you know where....yes, the doctor!

Quit policing the Neurologists and start policing Congress. They are the ones that need watching!

Go BOO someone!

http://sidestreets.freedomblogging.com/

Halloween is my father's birthday. He died a couple of years ago. I came across this in the Gazette today and thought there is an idea! And I know just who to BOO, too! That is if I can get out in the snow!

I thought I'd share the idea with you. =) Doesn't that sound like fun?

Now go BOO someone!

Silence speaks volumes

...unless Cake Boss is on!

Alex was having one of those "everything is happening at the same time" kind of days at home. I was doing fine or so I thought. I really was not.

As I said I was in one of these "gee how do I be a good girlfriend AND grieve too" modes and I realized there were no simple answers. We had to find and define the rules ourselves. Few are in our situation ya know. He had been bombarded with my multiple deaths, domestic violence and a chronic disease situation so gee whiz, what was he to do? Cringe? It wasn't what I was seeking either. It is a fine line to walk whichever side of the fence you are on. I can be happy as a pancake swimming in butter and then someone's purse reminds me of her. Or a book at Border's. There is always something on the menu she would always order and never eat. She'd box it up, take it home where it would spoil. If I ate from it, she'd get mad tho. Those memories jump out at you and bite like fire ants.

BUT, it is time for
a new chapter in my life.

Some things are to remain private between us because that's how I like it but suffice it to say this: I texted him while he was in the middle of his busy, busy afternoon but he got online anyway (brownie points for that one cuz I knew how crazy busy he was) and said some extraordinary things. That's the part I wish to keep private. =)

Later on he showed up at my door (despite the cold and snow) and we watched several episodes of Cake Boss. I don't think we said much of anything; now it was time for Cake Boss to do all the talking.

Cake Boss features extraordinary birthday cakes designed by Buddy. I loved the jewelry box one- the edible dress was exquisite! I would want to showcase it, not eat it! Actually I wanted to wear it. Yes, wear it. I have no place to go in such a creation either. The one for Lexie from New York who loved flip-flops, beaches, etc was stunning- to see it go crashing down the stairwell was heart-stopping. NO! But they created another one in two hours flat. They make it look so easy but you know it is not.

Wasn't the Bride horrid for taking all the colored icing and squirting it all over her first wedding cake? Her poor husband...I hope he pulls the plug on his marriage after seeing his wife on Cake Boss. She's cruel to people. She's....evil.

To sum up the point of this post: I am going to remember I have some good living left to do. There will hard moments but I need to think like Cake Boss; mishaps happen and you do what you got to do. You make another birthday cake for Lexie when the first one falls down the stairwell.

I learned that from Alex before Cake Boss came on tho.

Just sayin'. =)

It is hard to grieve and be a happy girlfriend too

How does a grieving mother handle mourning her daughter's death and be a happy girlfriend at the same time? Not many single women have this problem I think. Do any of you? With a chronic long-term disability as a cherry on top, I feel alone in this topic aisle.

One has to mourn and one wants to be the happy girlfriend too. It is a tricky wicket.

I am also trying to remember who I am- the funny me, the one who made everyone laugh. There is a fine line between being normal-grief crazy and crazy-grief crazy. Only someone who has lost a child can understand. I do not consider myself over-the-top but I am grieving. I hurt for my daughter who would turn 35 on November 7. That is around the corner peeps.

But life goes on. The dog has to go potty in the cold snow and there is never enough money for the Jeep. I feel like Nicole did when she was struggling to make her car payments. A sudden shift in finances makes the house of cards tumble down. Will Medicare hurry up and decide already? I am broke. I need to qualify for Medicaid now. The Tech said all my application required was the Supervisor's signature. God. Sign it, would you? (I am NOT muttering about health care reform being under the care of these same...morons in this post!) I need to buy kitty litter. I can't afford to wait until November. Really. So hurry up. I did apply on May 29th. Wow that is a long time ago! In fact- shall I say it? My daughter was still alive when I applied.

I also got another infuriating document in the mail. Oh please. They want my tax year information by December 1, 2009. But folks...don't most of us get it by January 31, 2010? I have to fill it out too. It's a very important form. However how am I to get a wage statement except by you guess it- standing in line at Social Security!

In the meantime I am grieving for Nicole and trying to figure out how to be a happy girlfriend too. It doesn't seem to bother him but it bothers me. I miss the normalcy of my previous life, when death was not part of my vocabulary at all.

I miss normal. I miss my daughter my father my grandmother my aunt and uncle. And my dog and cat.

I don't miss my ex-husband at all.

There was a "job" opening...

as a medical mj critic opened in Colorado. I took a look at it.

They thought 100 applicants was "a lot" of applicants. HUH? That was a lot? Were they stoned?

Then it said "pay was meager". And we wish we could reimburse you for the purchases too. Is this a real job or a volunteer position?

There was no mention of who was going to be paying for the gas so let's assume the "volunteer" was to pay for the gas. No mention of health insurance. Do they not realize most of the medical mj folks are disabled? (or should be?) And that most savvy ones have to grow it themselves because well it's too expensive to buy?

Westworld needs to advertise this as being what it is; a volunteer position in which you purchase your own mj medication and write about how it affects your particular condition. In order to partake a variety of strains you have to be able to fund this particular journey of discovery.

Another thing is: if we are to take medical mj seriously, shouldn't we take a look at how it affects each disability or condition? I would imagine that for Multiple Sclerosis it does one thing and for migraine sufferers it would do something else. In other words, wouldn't a migraine user prefer a different strain and require far less usage? As a medical mj critic I would be asking these questions.

I cringe every time I hear of medical mj advocates supporting "sin tax" on medical mj as a way of boosting their cause. NO. Ask yourself the question, is it a medicine or is a sin? If it's a sin, then say so. If it's a medicine, then say NO to "sin tax" on medical mj.

Back to being a medical mj critic.... In order to be a genuine critic you have to remember it is a medicine and not simply pot.

Sometimes you do have to lie...

I was at Borders standing in line to make a purchase. Behind me was a young mother with two small children. We smiled at each other before I saw a book on carving pumpkins. Had pumpkins evolved or what? Flames were shooting out of three pumpkins instead of a simple candle I remember from my childhood. Extreme Pumpkins!

I said to her, "I'd move those pumpkins back a bit! No, a lot-I'd be scared of my kids falling into the pumpkins! " The pumpkins had flames shooting out of them. Way cool, tho. I also told her my kids had a thing about pumpkin guts. No thanks on gutting them. We had to use markers or external paraphernalia (so did hers as it turned out). But these flaming pumpkins were photographed on the edge of the driveway...where kids walked. I had visions of costumes erupting in flames.

She too appeared startled. She said "I think that's dangerous for children (and a bunch of other stuff) then came the how old are your kids?" question and you know what- I walked right into this one. Not intentionally of course. I was being me.

Now here is a young mother. She is happy. She has two happy children. I can make or break her day with my answer. So I lied. I said I have two adult children, ages 34 and 28. She laughed and laughed when I told her their ages because she said "And you still worry about them falling into flaming pumpkins?"

Yes, I do.

Sometimes you have to lie to protect the innocent.

Something new

I did something I had not done in a long time today. I made the whole waiting room erupt in laughter as we waited for our mammograms. I cannot remember the joke-or if it was a joke. All I remember is it happened as I stepped out of the closet while wearing one of those three-armed thing-mah-jings. I did address the "crowd".

For about two minutes I felt whole again. I forgot I had lost a daughter and that my life turned surreal in a heartbeat. I felt like myself but a more confident me.

Baby steps.

Sometimes I hate turtles

Four Generations

I found this picture on Nicole's camera. Four generations. Two are gone, the oldest and the youngest. The entire bottom row is gone so to speak. It was taken at her 30th birthday party. Five years ago. So much has changed, so much has been destroyed. And there is her turtle I am holding. The ever-wise turtle.

Turtle Walk:
This is a time of great change.
This is a time of coming together.
This is the time for all relations to remember,
who and where we come from.

author unknown

I don't want to remember who I am or where I come from. I want her to come back but we know our dead children do not visit.

On another topic: where did the word "Mammogram" come from"? I am to get one today. I know the drill. Stand forward, put boob on plate and let machine smash until nicely compressed and then take a seat.

If she finds something wrong, she will come find me with a grim face.

Mammo-gram- is it like a tele-gram? Yes..that's it. Has to be. It is the one test you take where (at least here) you get your bad news on the same day. There's the blessing! YES! The instant-o-gram!

"The Good Wife"

I watched it this morning and a line jumped out at me.

Alicia Florrick said "I've been vaccinated for the last seven months." or something like that when another character tried to play major head games with her and The Good Wife put a stop to it because she was now immune to those kind of things.

I am immune too. I have my vaccinations as well.

As I told Nicole once about men and male chauvinist pigs, "if the tail fits, curl it". Our interpretation was you can't be a male chauvinist pig unless personally "you curled your own tail".

Chris Noth does a squeal-ly job of wearing a curly tail in this new series but I liked him better as "Mr. Big" in Sex and the City. He was *super hot*. Still is but you know what I mean...now he's uncouth. :-<

I adore the show. I instinctively understand the character and Julianna Margulies makes chunky raw onions tastes like expensive chocolate with her acting skills. She does not have to speak to say volumes and volumes. No- not a chick flick.

And speaking of chocolate and onions-I hate chunky raw onions. So did Nicole. She was also one female that did not really like chocolate.

Or ice cream for that matter.

"Why don't you change,so I don't have to"

"Everyone thinks of changing the world,
but no one thinks of changing himself."
– Leo Tolstoy

I saw that quote at a blog I read regularly and have for some time. The Happiness Project and the link is in my list I believe. I even told Nicole about that blog while in Texas. Well I have certainly changed a lot. I wonder how much of it is for the better, how much is for the worse.

Relationships are far more successful if people don't go around thinking "why don't you change so I don't have to" cuz it's far easier if we do it that way. "You change so I don't have" to the other person in the relationship. What a cop-out. How about looking in the mirror first?

Once the ring is on my finger I seem to become a Mrs. instead of remaining a 'Ms'. Whether by force or by choice is a question I shall not tread on; suffice it to say it is like making fruitcake, there's lots of nuts and fruits in it from God knows where in your family and his. In the end nobody wants a slice, right? Everyone contributed but no one, no one, takes the blame for the icky fruitcake. Well hey. I am taking full responsibility for the contribution to my part of the fruitcake batter but I see no one else stepping up to the plate for their contribution.

I have learned by looking in the mirror.

It was so freeing to finally get my last name back in all forms. My social security, Medicare card and everything are under my maiden name, *whoop, whoop*. It took me longer to get my name back than it did to get rid of "it". And we want health care reform run by the government too.

I hope it goes faster than my Medicaid waiver application as well and yes it is still being processed. Is it like processed cheese or something? We want reform there too but they are so slow....that one was started in May I think. May 29th.

Change of topic: I have been listening to music on youtube. Wilco, The Association, The Steeler Wheelers, Mary Chapin-Carpenter, Dave Matthews Band plus more- but found a new song I really like. And for a deaf friend named Karen who I know that reads this blog- She has a new cochlear implant, here's a song, "Wild Horses" with the lyrics too!

Today I hope that you...

have a good day today. That's all for now.

I don't want to answer that question again

The GI doctor appointment went well. I'm to go to the hospital and will be put under via IV for the scope. Turns out that one of my Multiple Sclerosis medications conflicts with the "conscious sedation" they used previously. Well geez...the PCP that referred me for the scope is the one that prescribed the medication! Lesson learned.

As I was filling out the medical history my heart stopped again. There was that damn question. "How many children do you have?" STOP. Just STOP. I do not want to answer that question again.

Yet I will be asked that question over and over and over...and over again. There is no right answer.

The house went *poof*

I heard from my Realtor today. All of a sudden the house is being foreclosed on thanks to Washington Mutual. Today. It had a short-sale contract on it and the buyers were anxious to have it. There was not much of a shortage due to the escalated payment plan I had put in place.

Countrywide/Bank of America (they were bailed out by our almighty government but I guess they didn't hire any people in the process) never did answer the phones. Seriously. They were "always at a meeting". (the decision-makers) I have the transcripts of what went down from my Realtor. Oh well. He really tried and he lost a lot of money trying to sell the house. A lot.

Isn't this ridiculous? The house will sit vacant. The buyers want the house but can't buy it. I guess when the bailout money came they forgot to hire people to answer the phones. Nobody is answering phones. My Realtor's asst. was on the phone one hour and a half and then got CUT OFF. There's a lot of details to this story but suffice it to say, there's nobody answering phones.... you know the drill. Press 1 for this, press 2 for that. So Washington Mutual gave up and called the note. They have a $0 deficiency too. What is their problem? Nothing....just impatience I guess. They got tired of Countrywide/Bank of America not answering their phones too I guess, HA! I don't know and I don't care anymore.

I suppose in some morbid way this is poetic justice; I mean whole lives were uprooted forevermore and in such a twisted horrid way. Nicole was severely impacted by what happened and after seeing what she went thru this doesn't matter anymore. Everything is survivable after Nicole. Everything.

A house is a house but a home is where you are and she is gone. I only have parts of my home left and I do not need a house for that.

Good riddance to the house but a ludicrous story at the same time. All my Realtor needs is someone to answer the phone.

I am now an average American. I have a foreclosure on my record.

Tomorrow I see the GI Guy

Oh dear. That's never good! It's time for my colonoscopy. Normally one gets one every five years but I'm to have one every three years.

Tomorrow tho is a simple appointment to go over my requirements. Yes, requirements...for sedation. *insert smirk here* Three years ago before my life fell apart like friable stale cracker crumbs I had my first scope in which sedation failed. I think there was more to the story than I was told because the doctor made a point of telling me to get a general next time and said "you want to keep breathing, don't you?" Wait-isn't it their job to keep me breathing and me comfortably sedated? It was not my fault I wasn't comfortably sedated even tho he tried to make me feel guilty. To make a stupid story shorter let's just say I had four doses of twilight sleep and into the twilight zone I did not go...instead I was held down while I yelled NO.

A 5 cm pre-cancerous polyp was found, removed and instructions to get another one in three years was ordered.

Now after three wild years the time has come. I do not want to go but I will. My PCP said I had to or he will hunt me down. (that is not a bad option)

So tomorrow I see the GI Guy. Medicare does not pay for a virtual (Geez! Noooo? Really? I am not surprised!) so that's off the table. Medicare is cutting everything out so pretty soon we will be left with nothing except perhaps a token doctor visit every now and then. =p That's my professional and optimistic opinion of Medicare! But soon Medicaid will be in the picture and my future will be even rosier. A personal attendant comes with a Medicaid waiver. Yes it does!

However I'd rather have a general....

Another nomination

To Mike over at "My Life all that goes with it I award this Bullshit Award for saying as he sees them. http://franko2366.blogspot.com/ Keep it up. Your sense of humor is much appreciated.

Time to nominate:

I am nominating Denver ReFashionista because everytime I go there I leave feeling better. You can read her blog at Living! With MS at http://ysestringer.blogspot.com/

And while I'm at it, I have to nominate Herrad at Access Denied: Living with MS http://accessdenied-livingwithms.blogspot.com/ with the Most Kreative Award because her photos always brighten my day.


I have more nominations coming. I am not done. =)

*boom-boom-cha-cha* or *om-om*

I was at the Woman's Business Expo this afternoon and saw a Zumba class in action. Once again I wanted to take that class. Wow is it fast-paced or what? Beginning Zumba 101 anyone? I happen to like the beat and the groove one will have to get into to keep up.

I know the MS Chapter is looking into a Yoga class for me tho. Maybe that's the direction I need to go. I don't know.

Zumba *boom boom* or Yoga *om om*.

Four months

Today Nicole has been gone four months. I actually had to count because it felt like forever and ever. I mean it feels like years and years. But no, four months.

I have gone four months without seeing her and not having this heaviness in my heart. This time it is different, I know I will never see my child again. What would be her 35th birthday looms around the corner. It is next month. November 7th. I dread it. She was supposed to turn 35. TURN...35. As in add another candle to her cake.

I really cannot believe this.

Copaxone Injection Sites and HazMat Containers

Why is it when you rotate to a new previously unused (but legal) Copaxone injection site it burns, stings, welts and reacts as if you are a Copaxone newbie? My belly was sore from overusing it so I had to find a new spot to abuse for awhile. I do use my arms in one area once a week and both butt cheeks too- but today I went a little lower on my thigh and ye-owwww! Flashback to day #1 on Copaxone!

Thank God I found my old AutoInflector. My newer one was firing them in with a slightly bent needle. I still cannot do manual injections. That started after Nicole died too and I have not conquered that fear. One day at a time so the AutoInflector slams it in with the force of a cannon. As long as it gets it in I guess? It sure hurts- and makes little eggs the size of ostriches I swear. Dents r Us.

I am now about to start my third hazardous container of injection needles but I do not know what to do with those red things with the skulls logo!

Nobody will take them. Should I recycle the hazmat containers and build me a house using them as insulation... and let's see, maybe some stucco or? When I was PAYING for my medications they (whoever *they* are) picked them up free. Because I am so poor I get my drugs free with a haz-mat container from the very nice drug company however I have no way to discard of the said haz-mat container(s).

Before I get to container #4 I would like an answer. =) What are you guys doing?

Good morning Colorado!

When Gini woke me up this morning (oh Gini!) we went outside and were greeted by a nice sheet of black ice. I slipped and almost took a dive into first base. (but recovered)

Winter has arrived and along with it, my "how to take a shower" problem has returned. I am one of those temperature-fragile freaks of nature; I like my showers HOT so I can get warm but then when I get too warm (ahhhh...bliss) I faint. Nevermind the fact that after showering one is instantly cooled down once the shower is turned off! BRRRR!

Fainting is not good and it has happened before. *Plop*, I go! A tub does not do much good as one can slip under the water with no effort if I make the tub as warm as I want. I like my water...WARM. We all know what happens when one gets out of the shower wet. Yes...you become cold. That is if you have MS and a cold apartment like mine. :-<

I miss the luxury of a long, hot shower....but what I do is get in, get wet, soap up, rinse and get out and get dress as fast as I can. I cannot risk fainting from the heat of the shower or freezing from being cold and wet.

What do you guys do to enjoy your baths/showers safely? How do you stay warm without fainting? Any tips?

Okay it is cold but it is not cold

You know that disease called Multiple Sclerosis has a side effect that is really annoying. It can be very difficult to control body temperature if you know what I mean. However I love SNOW. There's something serene and *oh so exciting* when it snows.

Dressing warm is a challenge on a limited budget. I know the secret to staying warm is to layer up. I do miss my old fireplace. Instant heat-even for a few minutes. My face feels cold to me. MS is odd like that.

I do have good news to report. Medicare now has my name right. WOOT! I am me again. It only took 14 years to get myself back.

A thank you to my readers

I want to thank all of you who have followed me from the first injection of Betaseron (don't go looking for it- I took it down!) to the death of my daughter. Wow, what a ride?

Anyway many of you have emailed me all sorts of support and for that I am grateful. Thank you. I appreciate it. It is hard to start blogging publicly about "simply being diagnosed with Multiple Sclerosis" and then all of a sudden having your life fall apart in public. Sure I could have faked it or simply deleted my blog but I intended to be honest and well the train crashed and that was the end of the ride. I make no apologies for it.

I do thank all of you for sticking by me.

And I thank all of you for the various awards. =)

No, I do not *twitter*

So that you guys know- I do not twitter. I did have a twitter account at one time but forgot my user name. That's Multiple Sclerosis for you! However what was interesting is all the events that transpire before and after that discovery.

Any "Twitter" activity you think is mine..is NOT. Don't think I *tweet* because I do not.

First up- I found out I someone had compromise my computer's security. I can't imagine why? Really? You don't say? A twitter account named lemondrop suddenly appeared on my MSN profile. It is NOT my twitter account and the only way to put it on my profile is to have my password....ah! But this person did not have my password.

Don't think it's the same password I had prior to my split. I am not that naive.

Alex took my laptop to someone he knows and sure enough, creepy software was found on my computer. You know...the dangerous kind. I am now going everywhere that has a password and changing them. And mixing them up.

I will take care of the matter. Tweet safely!

*Chirp*

Chasing sleep and finding MS

I have a sleeping problem. A major one and I guess it is related to MS as I had this problem before I lost Nicole.

I am not happy....this morning I woke up as always for the 100th time because The Goldilocks Syndrome was at work. I was too hot, too cold, there was too much light, or the light changed, or the dog moved, or Daisy moved walked across me. I notice everything I did not notice before.

AND!!!

My mind will not shut off. SHUDD-UP, I tell me-self...yappy-yap my brain goes! My brain is on a hamster wheel. Round and round it goes, where it goes..well, it goes no where!

I need sleep. I can't fall asleep readily and then I don't stay asleep. It's insanity.

It's as if my brain refuses to become tired. It's wired...it's acting steroid-al. But I am not on steroids.

I hurt from head to toe. Everything is hurting. I feel a hot poker embedded in my shoulder; it is bottom-heavy with melting marshmallows dripping down my back. It is a new symptom. Frak.

I have one of these
in my shoulder

Medicare does not pay for pain relief but I don't know what they could do. Reboot my life?

I have a boyfriend

Alex smiles even
when I can't

It started with
duct tape

I am not sure how we "met". Seriously.

I do know when, where, and about what time we met. We met on June 26th at about 8:30 am at Starbucks. It was exactly one week to the day of Nicole's wake. Yes. One week. The previous Friday I stood in a daze as what seem like hundreds of her friends poured thru record-breaking 106 degree heat. The AC was cranked down to 55 degrees but the house was boiling hot. Too many people had come to say goodbye forever.

Now it was a week later and I was *bleeping* like a sailor because I had to go to Starbucks. Why I had to go I didn't know except Mom said "It will be good for you, so go" and I went. I was in one of those programmable robot modes. Hop, jump, turn. Numb. I could *bleep* tho. WTF. I still have all the emails and I did tell him to bring duct tape in case my mouth offended him. Something like that.

I walked into Starbucks and there was Alex holding a pink gift bag with decorated tissue paper sticking out of it. I say hello (I think?) but I do remember asking what was in the bag right off the bat because geez it was right in his hands...he said no, get your coffee. I was happy we didn't stay inside- outside we went!

Of course I told him right off the bat about Nicole. It was all I could think about. She had just died, how could it be? At some moment I let out a *bleep* and that's when he said I could open the bag. When I did I found roll of pink duct tape! The man obviously had a sense of humor. I felt the beginnings of my first smile since Nicole had died. I really did NOT expect that and loved it. It was appropriate for me, witty, clever and not over the top.

However I was so not in the mood to date and I could not figure out how we "met" in the first place so I was very guarded. That story I will keep to family and friends and the mysterious elves of fate. I like to think that Nicole had a hand in all this. Mom says that Nicole told her she "sent Alex to me but that the duct tape was his idea". I told Mom if she had a direct pipeline to Nicole to tell Nicole I was PO'd she was talking to my Mom and not me- and if she had something to say to me about Alex she could come and tell me herself! So that is MY official stance on that but I'd like to think.... seriously, what mother would rather hear from her own daughter rather than the medium? *harumph*

Back to Alex- he has two children. A daughter who is a hospice nurse; do I not relate? My dad had them. My grandmother had them. He also has a son who is a high school chemistry teacher. He and his wife have a one year old daughter. YES! He graduated from the culinary school (watching him cook is like watching Alton Brown at high-speed) and ummm...can I say it is very good? As it...very, very good? I love watching him cook noodles. WOW. That is an art form, cooking noodles. Trust me.

Oh get this- he is a volunteer fireman/paramedic for Black Forest. Well, my BF with MS has a comedian hubby who is somewhat famous. Okay...he has met him. Small world! The other morning he was eying my hand veins and he jokingly said "18-gauge IV needle..." um, NO? Stay away from my veins!

Paramedics don't do injections. I dimly recall my BF with MS saying something about this too. He does IV's, cardiac, etc. and can't do Copaxone? Darts anyone?

We have been going everywhere. To the top fo the world (drove up Pikes Peak) to the bottom of the ocean. (he made me a DVD, Draining the Ocean) We go on picnics. We work on the yard at one of his houses all summer.

Why he stuck around I will never know. My plate is full right now but he's a Chef. He's used to full plates.

Compassionate Zombies...

Did I vanish? In a word, yes.... but not really.

It was a strange week of highs and lows.

I was talking to my BF with MS yesterday at lunch about friends and death. One question I have is this: Why is it when one loses a child, one loses friends too? On some level I suppose it could hurt but not really- I don't dig down and explore it because the overwhelming pain I feel from Nicole supersedes anything other pain I can feel- death is not contagious but in my case it appears so since so many died so fast and in rapid succession. I certainly did not expect to lose my child. My life turned into a mini-tsunami that is too painful for most to comprehend, much less deal with. So be it.

I did join an online group "Compassionate Friends" for some support but it was too overwhelming for me. Everyone grieves differently and the grief pouring out of the online group was too heavy. It would send waves of depression over me each and every time someone posted something so I had to leave the group. I am not ready to be a "compassionate friend" to someone else right now I suppose...so on some level I guess I understand that detachment.

Does that mean one gets a free pass on being a compassionate friend?

I think I do right now. Does someone who has not lost a child get a free pass? Does that make them less of a friend if they can't handle a friend's loss? I do not know.

I am not walking around crying all day if you are wondering- I am a compassionate zombie if that helps. My personality feels hidden away, as if it were put in a Pandora's Box. At times I wonder if one day it will explode when opened like a suitcase bomb later one with all my suppressed emotions. I had a meltdown last Friday that lasted all day. ALL DAY. Without a doubt it was the worst day of my life, bar none. I barely made it.

It was Season Premiere for most TV shows this week. All of "our guilty pleasures" started this week. They were painful to watch- Grey's Anatomy was one of Nicole's favorite shows and George HAD to die. Just had to. Then on Desperate Housewives Susan's daughter ends up strangled (another Nicole show and guilty pleasure) and whaaaat????? STOP.

I don't know. Can't they all go and get misdiagnosed with Multiple Sclerosis or something like on House???

Should I? Or should I not...

I am having an argument with myself. I am composing a 250 word entry for a contest- LegalZoom sent me an application out of the blue via email. I won the Macy's makeover contest with Clinton but had to turn it down when the unthinkable happened- my daughter died the week before I was to show up at Cherry Creek Mall. I declined.

Of course it would have shot my Medicaid application to hell. Isn't it funny how winning a contest messes up your medical benefits? Well...it does!

If you have Multiple Sclerosis
you better stay poor or you'll lose your DRUGS!

Drugs: Meaning CRAB drugs for Multiple Sclerosis. CRAB stands for Copaxone, Rebif, Avonex or Betaseron.

All are injectables..not heroin, LSD or the like! I am merely clarifying so newbies don't think I am promoting DRUGS. As in "SAY NO TO DRUGS" type of drugs. I will say that medical MJ has a place in this turf war. It works.

Yes I am legal. Yes. I am a card-carrying member. I would much rather go to Walgreen's and get it but NO. I do not smoke it, I use a vaporizer. I was pushed into this unknown territory because of Multiple Sclerosis. Don't like it? Well, let me see you with a boa constrictor around your waist (sometimes around your neck even!) and socks so tight you want to scream. Plus the sensation of water dripping down your legs, the spasms in your thighs, ohhh yes the sleeping problems too....nevermind my toes- they like to make pretzels at the most inopportune times. I could go on and on but!

Speaking of spasms- now that Medicare kicked me off Vesicare (oh thank you Congress) as of July 1st along with some other essentials (fiscal year problems?) I am finding bathrooms a challenge again. Especially public ones....I need to hear water to pee. HA! Plan B involves flushing the toilet, closing your eyes and visualizing the Colorado rapids and hoping it will flow. It should not be that hard to pee I say. I did have a problem result with my kidneys at my last visit. "Drink more water" the doctor solemnly said.

I want my Vesicare back
but our government said NO

Dogfight!

I was outside with Gini when a dog on a leash (and no owner attached) comes bounding at us. Gini was terrified and I wasn't sure what to do but I stood my ground. I wanted Gini to stand her ground too but she was having none of that! She ran behind me!

Yelping on Gini's part ensued due to some sort of entanglement by her running behind me (I think) but when I saw the teeth of the dog- I knew a dogfight was brewing and this dog was BIG. Visions of Gini being eaten for dinner in one chomp were flashing before my eyes.

I scooped her up just as her owner grabbed her dog. I don't think she said anything to me.

A leash law means "keep your dog on a leash". It does not mean let dog walk around with leash dragging.....

UGGS should be part of the health care reform debate

How about that- we have snow today! The daschie crawls into her heated bed and gives me the oh no winter is here look. I find my UGG boots in a suitcase. There is one pair of heeled UGG boots. What was I thinking? I don't know about those. I have worn those probably twice. Once to try on and the second time to Andrew's school event at PPCC. Ebay, baby!

I need some more UGGS, I declared. I say this every winter too. They are expensive. They are from Australia. Why they are expensive I don't know.... I could go thru three pairs a year easily. Summer included. My feet have the Goldilocks syndrome too. They are too cold, too hot, too prickly, too ouch-y, too hurt-y for shoes. However UGGS don't hurt. They don't. Fake UGGS hurt. Other wanna-be UGGS hurt too. I even bought their rival, Merrell because the sales guy (who knows me as the UGG's woman) knows I swear by UGGS and he convinces me to try just this once...to get Merrells. Nope. I require UGGS.

I need two pairs this year. I am looking at my wallet. There is a need vs a want debate going on in my head. I do not understand why my Neuro cannot order UGGS for me with her prescription pad since it is the only thing I can wear that does not hurt my feet.

This should be part of the Health Care Reform Debate.

Sleep issues

SLEEP!!!

I need SLEEP!

It shows in my face too. Concealer does not cover gray circles under my eyes. Should I go for DermaColor? Pfft.

That's all I have to say today because my brain has collapsed from lack of sleep. I am tired.

Last night I was thinking about Nicole and that was a bad, bad idea. Never go to sleep thinking about the hole in your life. Nothing ruins your sleep quicker than thinking about your first and last moments with your child.

Something Norman Cousins wrote enters my mind; where I read it I cannot remember.

“Death is not the greatest loss in life.
The greatest loss is what dies inside us while we live.”

I live on a Balance Beam

Do those of you with RRMS feel as if you are always on a balance beam?

That said, I notice that I feel as if I am always on a balance beam. My BF with MS and I tread carefully in a couple of eateries- Panera Bread has different textures in the floor, it changes from wood to carpet to tile and back again. (or something like that!) The other eatery is Chipotle's and for the life of me I cannot remember the flooring they have but I *do* remember it has steps, and when the sun hits it just so the light refraction makes the floor appear wavy. She and I suddenly feel we're on surfboards in the Pacific Ocean carrying huge trays of food. Last night at Ted's the same thing happened. I was carefully making my way between tables closely jammed together to the rest room and back. The floor was shiny wood boards and not even. Oh God- I'm not going to fall in everyone's food, am I?

It is something I am used to-this feeling of being on a balance beam but lately I have been going to the mountains, on picnics, and walking where uneven terrain is the norm. I love it, those activities. It is why I moved back to Colorado and finally I am getting to explore.

I see my balance center is disagreeable. I have resumed my wide-gait stance...a no-no according to my physical therapist. I know because I saw the photos snapped of me. Yup, there it was. My physical therapist told me not to do that. Don't compensate that way he warned... instead walk with your hips slightly forward he said. And there were several more steps (directions, if you would) following that first one I gave you listed in numerical order.

In short, he was telling me how I should walk.

I don't have the list of instructions on how to walk on uneven terrain without tumbling down the hill like Humpty Dumpty.

Do you???

The view from the top

This is where we had our picnic. And this is on top of the world, absolutely. You can see the smoky haze from the California fire in the valley below. Wherever we went, the haze followed. I thought of Nicole- how much she wanted to go to Oregon and she she never made it.

It was rather appros. My re-introduction into the world minus my daughter. Still beautiful but hazy it is. I am a mother of two but one has departed. I miss her.

I wonder what she knows. Does she know all there is to know? We've talked about the afterlife before.... we had experienced so much death before she died herself. We wondered what THEY knew. Were they watching over us? We'd say "But what about the times we don't want to be watched" with a giggle and ewwwwww..... surely there's some form of censorship up above!

I have no answers but I do like the tree I saw on the picnic.

Hello everyone!

First off- my Neuro report. I'm still at the same point *YIPPEE* despite some minor flare-ups due to the stress of losing my daughter. I was waiting for her to whip out her steroid rage prescription pad but she didn't. She knows I won't take them unless you tie me down and either force an IV into my vein w/a port like they did last time (is that what it is called?) or use the Jaws of Life to pry open my mouth to get the pills in.

'Eff off, MS!

In short, I loathe...hate....despise steroids. I will not take them unless I personally see a reason for it. I graduated from "the medical school of life" so that makes me an expert on anything steroid-al. Being victimized by steroids is almost as pathological as being victimized by a Narcissist. *insert smiley face here* I have regained control tho and now say a famous two-letter word to both....

NO!

Labor Day weekend was wonderful! It was the best weekend I've had since Nicole died. We went up to the top of Pikes Peak- saw the glorious beauty that makes Colorado, well...Colorado! The smoky haze from the CA fires were still hovering over the city. Rampart Range Road took us thru the woods (ahhh....where's Lady Marian and Robin Hood?) and we stopped for a picnic at a spot on top of the world, away from the world.

Talk about feeling peaceful and serene...I did have a few moments where I thought of Nicole and her love of nature- and I could feel the waves of pain washing over me as we passed by the beauty. I conquered them tho- and put them back in the box for another day. I can only handle *this much* pain in one day or I will break into a million pieces.

Yes, I regulate my pain of loss- I think of her all the time but am learning not to allow the pain to consume me because I have another child. Not only another child but other people in my life too. I can't make them unhappy...I do need time to mourn and it will take me a long time to get over her sudden death. It was unexpected. My son needs to bloom and go forth and not worry about his mother and everyone else for that matter. He needs to know I am okay. So do the other people in my life- I owe it to them to live fully in this new Nicole-less world. Yes there's a big hole wherever I go but that is how it is. The hole gradually becomes smaller but never disappears.

I came home restored, rested and relaxed...and I felt some colors of the rainbow that went missing return. I am healing. I will never heal from my daughter's death because you simply cannot get over that but you learn to live a new normal with different hues in the rainbow.

This morning when I took the daschie outside I could see stars still. (in the city it's hard to see morning stars!) There were several. I declared those stars were my daughter, my dad and grandma, my aunt, my uncle, my cousin's baby, Quill, Monroe and Carrots looking down and smiling happily.

I smiled back for a change.

Labor Day Weekend

I am thinking about Labor Day Weekend. I don't know if many of you know this but my daughter used to work with my mother and I in our family business for many years. We had a store called The Paper Garden at Artisans' Alley in San Antonio. We sold Yankee Candles, Midwest, Dicken's Village, Dept. 56 and greeting cards by the galore! Mary Englebriet, you name it, we sold it. Eventually we got into just invitations- it was an evolution due to competition with WalMart and all that rot.

I did hate doing Bridal invitations for the most part. They were too "Bridezilla" for me. And so were their Daddies and Grooms and Mothers and Mother-in-Laws. No one got off the hook. I saw a growing trend in families coming in and trying to make family decisions about one invitation, one event. OMG. What happened to the K.I.S.S. Principle???? I didn't like this trend. I am all for family love and all that but wow, a whole family coming in to argue over which shade of blue ribbon is too much for me. Especially when Daddy says "I am paying for it" because to me that reeks of control. Yes Daddy you are paying for it but you are giving a gift (or are you not?) to your daughter who is the one getting married so tell her the budget is $xx amount and SHUDD-UP. Oh. This is about another topic. HA!

We even had a second store, The Stamping Factory. Those of you who are rubber stamp fiends may have some of our rubber stamps! http://www.rubberpaperscissors.com/store_jone_stamps_intro.htm We had her line of rubber stamps first....as well as her mother. And my daughter was an avid rubber stamper. I hated rubber stamps with a passion. I did designed some. I don't know where they are but some of you may have some of mine and my daughters. LOL. Our names are on the stamps. You will know. Her name is Nicole Johnson. She did a lot of turtles, moons, stars, swirls....ahhhh...

Anyway, I digress....

What I am thinking about is how we used to complain all the time about Labor Day Weekend...we always had to work! We were pissed all the time about having to work every single holiday. She and I would whine and whine. Not fair, we'd say. We wanted OFF too. Instead we'd cater to those that were shopping. That went on for years and years!

Now I look back and am thinking about the various talks and things we did. We sniffed each Yankee Candle as if we never ever smelled it before. We really believed in that product, we did. After the founder sold the company the product became even better but they stabbed the retailers that made them famous in the back as well as the front.

Nicole and I would both debate the ethics of Yankee Candle Co.; dare we buy a product we so dearly loved? I can still see us at the end of each day around 5:30-ish...we closed at 6:00 pm hanging around the candles...smelling and sniffing each one as if it were a new experience. Mom would be off in her own paper world, straightening up the cards. Nicole and I had to sniff. By the way: I still buy Yankee Candle, that is if I find $25 laying in the parking lot which is never.

Oh, and play in the potpourri and complain about the customers who wanted to hand-pick their way thru the loose potpourri. It's called potpourri for a reason. We did not let our customers hand pick what they wanted; we used a scoop and they got what they got!

Mom hated one part of my personality which you guys might find a trait. I was uncanny in my ability to nab shoplifters. Mom did not want me to stop them or confront them. "They must need it more than we do", she would say. WHAT? NO! I was not allowing that. Hell that was my car payment in that lady's bag. Get it out of there! We had our share of fights back in those days. I was willing to tackle the lady who had what I considered "our property" in her bag but Mom was willing to let her walk out of the store with it. Nicole was on my side too but wanted to appease my Mom as well. Hey daughter! Show your support! I did not care if I lost a customer. I was going to do what was right, come hell or high water. Stop. Open your purse. Please give me back the watch you just stole. NOW!

Nicole and I also hated finding boxes for all the Dept. 56 houses, accessories and trying to remember which house went in which village. GOD did I hated selling those things. And when Snow Babies came along I said Mom....NO! We never did carry but a mere handful thank heavens. The other day I reminded Mom how much she hated seeing me come up the stairs with my Yankee Candle order....HA! It was always several thousand dollars but we could never keep up with the demand. I remember getting mad if she pared it down! Nicole and I could sell a Yankee Candle to anyone and that is why we were always out.

In retrospect I am glad I had all those days working with my daughter and my mother as well. How many of us work with our daughter AND mother...for years?

I have all her Christmas ornaments now. It's funny- they're all Old World Christmas ornaments. We both would pour over them and select which ones we want for our very own. Our taste are the same. A pickle for "good luck", (ha- so much for THAT) and there are the same Santas, the same birds, the same little Volkswagens.

Her favorite color, purple. So many purple ornaments.

Fatigue

Fatigue is insidious. It can be hard to look tired at times. One does not want to say "I am too tired to go do this or that" so one says "No, I don't want to do that" and ends up feeling pissy when someone keeps nagging at you to "Go out and do it anyway." Hello? I have a condition called Multiple Sclerosis. I would rather say "Thanks, but no thanks" and leave it at that.

Don't push me. I'm doing the best I can right now. Baby steps is what I'm doing on some days and bigger steps on other days but my Multiple Sclerosis selects the shoes to wear that day, not I. It speaks for me.

Lest one forgets...

Fatigue is one of the symptoms of Multiple Sclerosis, people. I *am* really exhausted. Plus losing my daughter was like losing my soul, my mind and my life in one fell swoop. My life shattered that day. I am slowly re-gluing all the pieces back together. It will never be the same.

I have to find a new normal and it's not the normal I like but one I have to live with. My new normal is a little different than my old normal because I just lost a daughter. One has to do with the other in strange ways. There are odd mini flare-ups but nothing worth calling home about.

I remember a dream I once had. It was shortly after I was dumped by an old flame. An old woman came to me in this dream- she said "Sherry, this is your Life Reflections Mirror." As I looked at the mirror I could see a large crack right in the middle of my face on the mirror. No matter where I moved my face, the crack in mirror moved with my face. She said "The secret to being happy is to find a way to move the crack on your face over to the folds of your hair, where it is not so prominent; it will only show when you want it to" and there was a small tray at the bottom of the mirror. I got to work really quick and started re-arranging all the mirror parts and when I woke up- I felt 100% better.

My point is we all have cracks in our "Life Reflections Mirror". We all have work to do on our lives. I would like a break tho, a break from the "Life Reflections Mirror".... I am tired of looking in the mirror and seeing all the work I have to do.

Sleeping with the Enemy

Sleeping with the enemy takes a lot of doing. First you have to have the perfect mattress. Tempur-Pedic in my case. Then the temperature has to be just right. The ceiling fan can't be blowing too fast or too slow. The blankets can't be too heavy or too light-weight. I shall not sweat or shiver. It's like Goldilocks and her porridge, I know.

Then one has to load up with either one of the pharmaceutical drugs or be prepared for a long, long night. Insomnia reigns supreme.

Many with MS find that sleeping is a problem. Why that is, I do not know...but it is so. I do not know what it feels like (any more) to go to sleep naturally. I only know of chemically induced comas. HA!

I also noticed that I am having a strange array of MS-related symptoms. I keep thinking I have a dripping faucet on my body somewhere. I'll feel water dripping (or running) down my leg but no...nothing's there. Or a strange numbness in my belly. (but a sensation of wetness too...)

At night, pillows are suddenly uncomfortable.

I toss and turn. Sleep eludes me, even the chemically induced comas.

The biggest lesson I've learned in life is....

Everyone is difficult to someone. If you do not think you are difficult to someone or have not learned that about yourself, then you have a lot of learning to do. Go sit on the thinking post and do some thinking. I am amazed at the number of people who think they are not difficult to anyone but other people are always difficult to them. HA. Little do they know....everyone is difficult to someone....and probably several someones at that. That is the norm, don't you think? If not you are dangerous for me to know.

It is now August. AUGUST! My father will have been gone two years. Two years. He died on the 26th actually. This post has been sitting around like dust gathering more dust.

Mom and I were talking about my Dad. We are so glad he is gone...as well as my grandmother. If Nicole had died before they did, we would have had a series of rapid funerals in a row. My dad would not have survived Nicole's passing. Oh no...no way.

Three years. What a ride I guess? Not one I would wish on anyone. If I took a life stress test, I'd be off the chart.

In three years:

My Aunt died.
My Uncle died.
My cousin Stacie lost her first baby.
My father died.
My grandmother died.
My daughter died.
Two of my cats died.
I had to give my daughter's cat away.
My dog died.
My house went to the brink of foreclosure.

My so-called stable marriage turned out to be the greatest illusion on earth.

What I do care about is learning lessons in life. I do know that everyone is difficult to someone, including me.

Court was postponed. My attorney has jury duty. Oh frak. Of all things...

Yesterday afternoon Billy dropped by. We were figuring out dates. I said "I've lived in my apartment a year and 4 months" and I think he was just as surprised as I was when I realized it had only been four months since I moved. I thought WOW, you mean a whole year whoosh by (really it didn't but it felt as if it did) and it was kinda scary the looks Mom and Billy gave me.

Yes it felt like it was that long.....

I hope somebody learned something meaningful from this post. Other than .... it was a long four months. Mainly that everyone is difficult to someone....so remember that if nothing else.

Goodbye, my friend

Quill checking out Gini Ginobili

This morning I took Quill in to be put down as planned and it was really difficult. I did not want to talk about it on the blog because you know what, I've had enough of my loved ones dying on me. I'm sick of Dr. Death wanting to be my best friend.

It was very strange. Quill had Cushing's Disease which could have been readily treated. Anyway. He also had several tumors and eventually lost control of said bladder and if you goggle Cushing's you will see it causes insatiable hunger, makes you want to drink all the time (now think about apartment living) and as a result of said Cushing's...it makes it very difficult to live with. He was starving to death, he felt. He couldn't drink enough water. He was licking everything and then he could not control his bladder OR his bowels. His dog food was $60 a bag and I can't even afford my gas bill.

Back to it being very strange. I told Quill to go find my daughter, my Dad and my grandmother. All three of them were very fond of Quill. He thumped his tail. Just once. We arrive at the vet and this dog is a dog that goes nuts when he is around other dogs, pants, is hard to contol and basically acts like a puppy. Not this time. He lays down quietly. Very, very strange...a few minutes pass by and the vet tech called my name and we enter. Quill again quietly sat. The vet entered and explained the process. He gave him a shot- Quill went to sleep on a blanket. Then the final shot was given and he was gone in a second.

It was....right. I feel he somehow found them as odd as that sounds.

The vet asked me if I wanted time alone with him and I said the strangest thing probably....I said "No, I'm so tired of death" and I hugged Quill and he did not charge me. He knew I was rock core broke. Since Quill was on a special prescription diet food I am taking it down there this week- perhaps they can use it with another sick dog. Darn, that dog food was $60 a bag!

Gini is acting very strange. Her barking is very subdued. I am not used to it. She is hovering.

I keep stepping around the apartment in a strange way thinking I'm going to run into the dog but he is not there. Another adjustment.

It is odd to know wow- I have gone from four cats, two dogs to one cat, one dog in what appears to be no time flat.

I'm playing a dangerous game

Trying to go back to work is playing a dangerous game. It all boils down to the almighty dollar and a single medication called COPAXONE. If I make one dollar too much I am in deep doodoo because of this condition called Multiple Sclerosis. It wouldn't be as big of a deal if I did not have this condition called yeah, let's all say it together...again...! Multiple Sclerosis!

If I had a different disability not requiring a medication or two perhaps this would not be such a crisis. But noooo! I have to have one of the more expensive injectables daily. What did I last hear, going up to 51K a year? HA. 33% of 51K...nope, can't do the math. I have a cognitive disorder, remember? That's why I'm on SSDI. Even so, unless you are John Edwards you can't pay 33% of 51K can you? Did not think so. However this medication allows me to work, people. WORK. At least part-time!

Really my biggest hurdle is not my MS. It's my daughter. I'm not sure I'm emotionally ready to return to the work-force. I am finding that the last few days have been harder than ever. I do know WHY and that is the real problem. Back to the dangerous game....

Thank God those evil, hateful drug companies everyone loves to bash gives away freebies otherwise I would not be getting my Copaxone. Yes I get mine free from those evil corporate money-grubbers you guys like to complain about everywhere. Ya know, a lot of money goes into R&D. That's research and development and nevermind the failed experiments on lab rats. I admire you guys..., I refuse to even try since I get all the side effects!

No this is not a plug, this is not a paid advertisement, no one told me to say this...I am making the point that these "evil" corporate companies 1.) provide jobs 2.) health care benefits 3.) something for people to do other than sit at home and annoy people like you and me on the Internet 4.) contribute monies to the economy so people who do not contribute anything to the economy (like me, for instance) can get free Copaxone.

When I was given the amount I could "earn" a month I had to laugh. Really, really, laugh...that number used to be something I wouldn't blink at.

My life is making me crazy

My bank has turned into a stepford husband. It is non-responsive. Call this number, press option 9. Only option 9 does not exist. It cannot be a typo.

There are only three options and none of the options fit my problem. See? It has turned into a Stepford Husband.

My paperwork pile grows again.

Lab tests

The doctor solemnly came in and said "We have some things to go over."

I thought for sure it would be my thyroid but nooooooo. It was normal. Now how it could be normal beats me because 1.) my hair is falling out 2.) I'm cold as a daschie in a blizzard and 3.) I feel like a prune- my skin is so dry! Since I've had thyroid problems for over 15+ years I was sure it would come back with a dosage change. NOPE!

Imagine my surprise when he wanted to talk about my kidneys. My levels were all over the place, he said. Was I drinking any water? I thought for a moment and realized something... No. I wasn't. Normally I am a water drinker but since moving into the apartment I have not been. Why that is I do not know. I just know it is so! He said with the medications I was taking it was imperative I drink lots of water, especially with Topamax. I actually take the generic form now that I'm on Medicare but I can't tell it! Topamax causes kidney stones and I've been there, done that twice. I already know I have one cooking. It's located on my left side in a place that should take a long time to get out but if I don't drink water it might hurry up!

Since being home I've been drinking my water and now I am remembering ohhh, that's how one pees....no wonder I was having a return of my *ahem* problem that I was attributing to MS. Ah no. It was a lack of water, not MS.

A warning to those of you who skimp! Stay hydrated!

Especially since we do drugs!

Monday morning blues

I woke up this morning blue. Blue as a crayon. Not teal blue, not aqua blue but BLUE blue. As in depressed. My emotional equalizer is out of balance. The bass is way down and the treble is way up. I think that's called "getting close to tears"...well, you know what I mean!

Unfortunately I don't have a blockage like the picture above. I am not trying to garner sympathy so that is why I am using a very clinical photo to make my point here. I hate sympathy. HATE IT. Absolutely HATE it! When people show sympathy I cringe.

My grandmother would cry if you even smiled too cute. Or hugged her neck. Or kissed her. Then it would start...the river of tears! Cry, cry, cry she would. ARGH! I hated it. For some reason it is really hard to make me cry now but um, not today. Today I'm all over the map!

Today I feel...BLUE.

I woke this morning and didn't like my Monday. Why I didn't like my Monday is anybody's guess. Some Mondays are like that I suppose. For starters I found an entire folder of photos that were missing and of course Nicole was all over the place....and it made me miss her all the more.

there was this picture.....

yes Nicole. back at you, too.


and this picture...
with her very protective brother,
Andrew

Plus a package came in the mail from the San Antonio Eye Bank. Nicole was an organ donor. Her donation saved the eyes of two people. All I could say was "Sorry but I don't want her eyes in those people, I want those bright blue eyes back in Nicole...as in LIVING in her."

That was kind of selfish on my part. I would never let her die without honoring her organ donor wishes but today I am not feeling ..... the love and compassion if you would. I want my child back.

It's not gonna happen either. Two steps forward, twenty back today.

It is nice to see the sun again....

This morning I went with a friend to do yard work. After you lose your child, there's something comforting about yard work. I don't know why that is but that's how it is for me. I remember Nicole saying to me one time as I puttered about outside with my coffee in my purple robe "Mom- you always look so happy outside!" and maybe there's a connection there. I don't know but I like puttering in yards...mine or yours.

As we worked on the yard I was thinking about simple pleasures...and how nice it was to see the sun again. The sun has been there all along but I have not seen it since she died.

The house is located in a friendly neighborhood I see. Every time I go to putter in the yard the homeowners come out to socialize and it reminds me of the old days, when kids and parents alike knew each other well. Kids are out playing and parents are out talking about whatever parents talk about. I remember those days but I don't remember my children's father in any of those scenarios. He was not the sociable type and I was. I was the deaf social butterfly, he was the recluse. Now I'm reclusive but I'm still sociable. At least I think so...no one has told me to eff off. When outside with the dogs it is amazing how many single men one can count on two hands. Talk about a quick way to get a date. Take your dog outside and instantly, men appear.

Back to the house....a guy walked by with his new dog- I managed to talk to him like I would normally. For me that was big. For him it might have been annoying, I don't know. The reason it was big is because I am not in the mood to talk to anyone I don't know well much less strangers. This morning it was natural, (but big for me) and I asked him how old his dog was. Five months old. I even asked him the name of his dog and he mumbled something or the other but I didn't catch it nor did I say "What?" but give me a break. At least I asked. The reason I'm feeling reclusive is because of Nicole. It is that simple. People R US, I am not.

Back to the sun- it was nice to see sun again even if it wasn't my yard. I am becoming familiar with the yard. I see the sod is becoming grass and is doing well. I see fewer weeds. A sense of accomplishment!

I see the same parents, the same kids in the neighborhood every week. I also see the same sun that shines outshine my apartment building too. I see progress somewhere in my life.

Mike and his firecrackers

Well Mike- here's one for you using Mentos and diet coke. A friend of mine and I actually tried this experiment and it was a blast. Literally. Surely everyone knows who Mike is. He's blogging about firecrackers today. HA! (My life and all that goes with it- click on the link in the places I go!)

It works...so be careful. These diet cokes are anchored down.

It does have to be diet coke. Regular coke does not work.

Wow are we are jumpy or what

The phone rang. It was Billy. He texted, "Your Doctor wants you to call him." I sighed. I had my labs done yesterday and even though I felt fine I thought well, if my number's up. FINE. WHATEVER. TAKE ME NOW! I'll go and join Nicole and be at one with her, whatever she's off doing! Just for a fleeting second I thought that. Yep- I did. Didn't bother me either. It wasn't a suicidal type thing, it was a well if it's to be it's to be multi-fleeting second pass in your head thing. It was too fast to really dwell on it but long enough to make note of it, how's that for brunt honesty?

Mom calls the Doctor. I start laughing at the situation but not really. I'm not sure what we're to do now. I mean really. But back up a bit. Not a word was said about my labs, it was about my insurance! Medicare knows me as a Davis. And my driver's license says Turner. And so does my divorce decree. Yes. I know. My social security card and my Prescription Plan D card say Turner. Well. T he other plans have me under Davis. It's causing the computers to have the mumps, measles and stuff. In short, nobody knows what to call me. I say "call me me whatever you want as long as my doctor bill is free like it's supposed to be cuz I can't even afford you..." anyway I just vanish into the nevermore while the two of them solve the insurance problem.

Tomorrow! Tomorrow! Tomorrow! I am grateful...I go to the dentist! I get my two teeth fixed courtesty of the local MS Chapter. They obtained the services of a local pro-bono dentist to finish the damages of my teeth! I am so happy. So...so...so..happy. I have a real fear of those two teeth from being thrown to the the floor falling out. They are still loose. Grrrr. Plus now my jaw is completely out of whack. Not all of it can be attributed to *it* because Nicole did die. That has removed everything. *It* is an annoying mosquito that has to be dealt with.

Back to Nicole. She is leaving me many messages in her journals and diaries. Some are poignant, some are painful...and some are as funny as they can be. I delight in all of it. Except one part. I am quite disturbed to learn of this about a person. It changes everything I know.

Now what?

I remember, do YOU remember?

Those of you who remember me documenting my colonoscopy right here three years ago before I changed my blog will recall that my sedation failed. And that they proceeded anyway while holding me down as if my protests were immaterial. I was heavily sedated yes, but yelling I was!

I was told later that I was given four times the normal dose of "Twilight Sleep" which is a form of conscious sedation. Well due to my Multiple Sclerosis there is some damage to my ability to accept that type of sedation. I also have a fear of being "Awake". Ya know? Because my last scope had one of those pre-cancerious polyps, I have to be scoped every three years instead of five. My how those years fly!

I have an appointment in October to discuss this "sedation issue" with the G.I. doctor. My PCP is pulling my file (it's all documented!) to see what went wrong. I know it was "Twilight Sleep". It seems it was a combination of Fentanyl and scoplamplaine I don't know. Hey I spelled that right!

I remember too that my Neuro in Texas telling me that oftentimes he finds his patients with MS have difficulty with sedation and painkilling drugs. That happened when I told him I wasn't taking Vicoden any more, that it gave me nightmares and he better give me something else. Darvon was too sedating. Elavil was way, way, way too sedating as well. (but it worked) Topamax turned out to be my answer. Non-sedating and killed my pain which was what I wanted.

Unfortunately for me that only lasted for about 12 years but it was a good run!!!

Now the colonoscopy. GRRRR. That's gonna be a PITA. A general is always a risk- but I want monitoring devices on me. I want to make sure I am asleep. I don't want to look asleep. I want to make sure I am asleep. Ya know?

I remember the colonoscopy. FOUR DOSES. They held me down. And this time we're doing it my way!

Two months

Today Nicole died two months ago. I found the phone number of her good friend in Arizona in her cell phone. Ironically- a text message in her cell phone was found- dated July 7th or so, "Are you still alive?" from a Mark.

No, Mark...no. She is not.

Mom had to call her. She of course was in shock. They were good friends and she was wondering where Nicole was. I am wondering too if that matters any.

I finally got to the bottom of all my paperwork. As in, put away. Sorted. Filed. YES. Some sense of order, finally. If not in my life, at least in my apartment. Whoop, whoop, whoop!

Tomorrow I get my thyroid tested. Tomorrow I drop off forms. Tomorrow I will make two more appointments. They were closed on Monday. Funny, other people were closed on Friday!

If nothing else,
I am having a Monday like everyone else.

The AutoInflector, Sr.

I have gone back to using the AutoInflector, Sr. as I quite not-so-fondly like to call it. My fear of injections now prevent me from injecting myself. I have not used that thing in some time. We are getting reacquainted- oh yes...don't throw away the red thingie.

Plus you must figure out the depth indicator according to how much fat you have. Fat is good. No fat is not good. Since I am thinner now than I was, I see why thin people have such trouble. Copaxone makes big welts. It uses up a lot of real estate. And at the rate of one injection a day, one must be careful not to ruin the real estate.

Landfill problems are an issue with Copaxone on an MS'ers body too.

It's back to ringing the doorbell. Place syringe inside autoinflector, set indicator depth- I have no clue so it's anyone's guess and ring the doorbell. That means push the button...and bombs away!

Like a rude guest the Copaxone enters my body screaming all the way in "I'm here, I'm here, hear me roar!" while I cringe as if someone had injected a bolus of Drano.

I prefer manual injections by far. Being injected by a rife every morning is ..... RUDE. So rude.

I am so jealous

I'm so jealous. Tracey from http://traceyslifeandtimes.blogspot.com/ saw Sir Elton John AND the Piano Man in person. And I had to ask...just had to. Did they play Uptown Girl? Yes. And they both sang together. Oh!!!

Vocational Rehabilitation

It is decidedly odd to be a client at a place your ex-husband worked at. Nevermind that some of those same people came to your house for an annual BBQ fest for many years when you were married. Oh, let me clarify. I'm talking not talking about *it*.

It did not matter to me that there were new faces, there were also some old faces. Someone who worked there for years and years finally bought a house. I wanted to ask him if he ever left the city of Colorado Springs, Colorado. But I was a client now, not a peer. I didn't feel I had the *right* so to speak.

It is just odd, that is all. A friend said to me "That has to be a good feeling, where old friends are trying to help rather than impede..." and I had not thought of it that way. I do not in any way feel like I am getting any sort of special treatment at all- it's that I know how the system works (lots of paperwork, ha!) and if you just cooperate within those boundaries, things will go smooth! Otherwise expect rocky roads.

I look at my "to do" list and put it away for tomorrow. Right now I'm procrastinating and that is not my norm. I know that returning to work means getting asked "How many children do you have" over and over again. I don't want to be asked that.

I talked with my BF with MS about the "how many children do you have question" and she told me about her friend who lost a child. He said "I have three children and one died, and yadda, yadda, yadda." that he feels it is your problem on how to deal with it. However it has been some time since his child died. My daughter just died.

However I will not deny her existence so there is no way I can say I only have one child to make it easier for someone else to get thru their day.

Today I pulled some weeds at a friend's house. It was fun!

Nicole's apartment is moving into my apartment...

...and I may have to move out.

Mom arrived with three bags of her stuff. Just three bags. Her car and some of her things arrive on Saturday. I have her things piled on my bed. I don't know what to do with them yet.

Yesterday I had a meltdown. Today feels the same way. During the night, my old friend returned. Sleepwalking. Remember me talking about it before? If not, then you came along after I changed my blog.

I know I've emailed while sleeping..I know I've gone outside while at the house. I've gone outside the apartment TWICE now. But last night takes the cake! As far as I know I went outside in a tank top and underwear at about 3:30am. (I hope no one saw me!) I sorta remember being by the Jeep and and being really cold! I know we had bad weather- as the bottoms of my feet were dirty this morning. The apartment doors were not locked either when I woke up.

When I told Mom, she reminded me of the times I used to get in the tub fully dressed at 1-2am to take a bath to get ready for school...I was 13 at the time. Yes- I remember.

I am not too happy about this development. Sleepwalking is not a good thing. I think I will have to dress up to go to bed now. I hate sleeping in pajama bottoms. Okay, that's enough!

I told Mom when I was sleepwalking as a kid it was because I was very stressed about school- I was learning long division and trying to keep up with my hearing peers. That was right before I transferred to a deaf school and after that I did not sleepwalk again until after *it* and I split up.

I'm not stressed about *it*. I'm stressed about other things...

Obviously I have to figure out some answers or I'll be sleepwalking through the apartment complex every night like the village idiot.

It's baaaaccckkkk!!!!!

Those fears, again. Of the needle. Yes, again. I take the cap off and stare, glare, stare and glare some more. I am really pissed. This should not be an ordeal. Stab and go. Think of yourself as a dartboard. It's easy. Just...GO.

I see dribbles of Copaxone oozing out and that is not good because that means irritation. Blah. Come on, Sherry, STAB. Now! But no, I don't. I stare and glare. I am mad but I do not want a shot today for MS. It is not my choice so I stare, glare and choose my spot. Still I hoover. Hoover, hoover, and hoover. And glare!

I see that I am losing my technique as dark circles are forming around my belly and upper thighs. Ah well. Another stare and glare. Frak, stab! Dammit. I went into a welt. And it really hurts too but I am not going to stab myself again so I do not pull out the needle. I push the plunger and watch a bruise form with an odd looking "hive". Oh joy.

Scarlett O'Hara did said "After all...Tomorrow is another day." I hope the fear is gone. I must take the shots so there is no point in being afraid of them. It's silly.

My brain needs to be oiled...

.....and all the clocks were outta whack in the apartment I "live in" but don't call home. The power went out Sunday night and I just reset the clocks a few minutes ago. In my world, time means nothing. I have no schedule. I get up when I get up, I go to bed when I go to bed. I make plans when time to make plans but otherwise, I think a lot about this or that. Mostly about Nicole, Andrew and what I want to do with my life. I have several options but I don't know which one suits me best.

I have a thinking problem.

Do I want to move, do I want to work, do I want to go to school...so many questions to answer. I do have the right to break my lease. All I have to do is show them my still valid protection order and I'm gone. I do have some ideas but I don't know which path I want to go on. Andrew is part of my life in a big way now and he must be considered. I am thinking. He likes some of my ideas better than others. Again, it's all I can say.

I was not clever enough to come up with the line "My brain needs to be oiled" on my own. :=(

I stole it from dummies.com, yes I did. See? http://www.dummies.com/how-to/content/understanding-how-multiple-sclerosis-can-affect-yo.html

This website has "executive functions" listed.... A big corporate sounding symptom for Multiple Screw-Ups. I am trying not to cuss but my postcard blog about the Multiple Sclerosis Spelling Bee shows the real word I have in mind. HA. Executive functions??? Isn't that a rather pretentious description for thinking about a lot of things?

From the website: "Executive functions include the high-level processes of planning, prioritizing, and problem-solving. Research has shown that people with MS may find thinking through complex problems or projects more difficult because they lose the mental agility to shift from concept to concept along the way. People often describe this impairment as "feeling stuck" or "lost in a maze." (okay..."lost in a maze" or feeling stuck" is good but the writer does not have to use the term, "executive function" here!)

Those with MS find thinking through complex problems similar to getting stuck in honey when you're a fly with many eyes if you ask me. Many eyes, yes. Flies take in more images per second than humans do. http://www.eurekalert.org/pub_releases/2009-07/tum-rit073109.php

I think I do as well as the non-MS'er except I don't process the information as quickly. It might take me a few hours but eventually I'll put the picture together. I do that executive function thing in my own way just like everyone else. Process them, I do...slower, yes due to MS...but I will get there and when I do, maybe I'll not like what I find and you'll wonder why it took me an hour to get mad at you! And no...I'm not talking about *it*. Since I have a sitemeter and *it* thinks everything is about *it*, don't think I'm talking about *it*. I'm not. Now let's move along.

Flies usually escape, ya know. The ones trapped in honey can either have fun slurping up the honey or allow themselves to drown and die. I will slurp!

Okay, back to clocks, my life and as Mike says all that goes with it.

The clocks are now reset but my life not. I have a week and a half to decide what to do. I do not want to go into Voc. Rehab. and say "I don't know what to do..!" School or work, I don't know.

The main reason I don't know what to do is because of Nicole. I was on a path that was clear as it could be when she died. I was happy. I was dating, I was getting my groove back. I won the Macy's contest with Clinton and was ready to go! Voc. Rehab. had me on fire! My path now is murky. I do know the maximum gross income I can earn now. I suppose that is progress.

It's rather gross, if I may say so.

I see I talked about a lot of different "executive functions" today.

The problem I am having is, it is hard to find a way to resume your life when your life does not feel normal in any way, shape or form. I thought of an analogy. It's like flying in a Boeing 777 and suddenly the ceiling peels off. You're told "You'll be okay but for the rest of your life you'll always fly without a ceiling."

My life feels that way since I lost Nicole. I'm flying in a Boeing 777 without a ceiling, forever. I have a lot of things I want to talk to her about and I can't. Not ever. I mean, not ever. I have so many things to ask her. So many questions and I will never get the answers. NEVER.

So how does one resume their life
when they are flying in a
Boeing 777
without a ceiling forever?

I wonder if steroids work for this.
*snickers*

Movie theaters serve condiments

You must stop by and read what Mike has to say today about movie theaters and condiments. I laughed all the way down....

This is my life and all that goes with it!: Movie theaters serve condiments

Boy vey!

My son came over last night after been gone for a week to Boulder. It was the first time we had been alone together since Nicole had died. I had not thought about that-but life had been very busy. Now it's almost August and it was our first time alone.

He has been trying to catch up on his very, very, behind life....he's still behind. He is still shell-shocked, I can see. We talked quietly of some things that happened. Some shocking, some not so shocking. I show him the pendant I made of some of Nicole's ashes into a necklace- "Is that Nicole?" he asks? Yes.

I talked to him about some of my plans and I can tell he does not like some of them but for privacy's sake I can not say what they are on this blog. We discuss the pros and cons of each, and I remind him no decisions have been made. My phone chimes twice- "Who is texting you, Mom" he says? He is both amused and concerned. I am not used to this. He is older now and the questions come. I find myself squirming ...! I am not used to being on the other side of the fence. He asks me the same questions I ask him. Boy vey! I have a private life, I remind him. HA!

I missed him. He is so funny. "Are you hungry", I asked? No. "Well, I have this..." Okay Mom! HA. My son never turns down food. I'd worry if he did.

He has changed. His sister's death has impacted him. Of course it did- it impacted all of us. He looks so tender.

I remember both Nicole and Andrew singing at the top of their lungs this song:

http://www.youtube.com/watch?v=w_dN1WXBxuw

Lyrics for deaf:

Saying I love you
Is not the words I want to hear from you
Its not that I want you
Not to say, but if you only knew
How easy it would be to show me how you feel
More than words is all you have to do to make it real
Then you wouldn't have to say that you love me
Cos I'd already know

What would you do if my heart was torn in two
More than words to show you feel
That your love for me is real
What would you say if I took those words away
Then you couldn't make things new
Just by saying I love you

More than words...

Now I've tried to talk to you and make you understand
All you have to do is close your eyes
And just reach out your hands and touch me
Hold me close don't ever let me go
More than words is all I ever needed you to show
Then you wouldn't have to say that you love me
Cos I'd already know

What would you do if my heart was torn in two
More than words to show you feel
That your love for me is real
What would you say if I took those words away
Then you couldn't make things new
Just by saying I love you

I see both of them in the back of the 7mpg station wagon...holding hands, singing in unison at the top of their lungs. It is clear as day, the vision I have of them. I miss them singing together.

In fact, I think I have it on 8mm tape. I plan to convert all the tapes to DVD and when I do, you shall...oh yes, you shall...see it.

I pick up my earmold from Sears. YAY. It fits. Thank God. He tells me "You're very nice but I hope I don't see you for awhile." Poor fitting earmolds mean he's not doing his job right in his mind. I reassure him that I'm difficult to fit and it's not his fault. And rest assure...I'll be back in no less than 6 months. The poor man...

My toes finally stopped zinging and zapping. WOOT! Peace at last, at least with my feet. The MS Chapter also emailed me and said they had a dentist and when could I come in to get my two damaged teeth that were damaged by *it*. YAY! I said anytime! WOOT.

Mom returns on Wednesday and I will get my thyroid checked. I know it's whacked. I nearly froze to death at Borders and it wasn't cold. Sheesh....

Another award and some nominations...

Thank you Lisa for my nomination. I am humbled once again.

To Mike, for being so funny and saying all the right things when things need to be said- I nominate you for your golden heart. You made me laugh all the time. http://franko2366.blogspot.com/

To Blindbeard, who also makes me laugh: http://blindbeardsmsblog.blogspot.com/

Braincheese, always: http://brain-cheese.blogspot.com/

Tracey's Life, for her utter devotion to the children of her friend with MS: at http://traceyslifeandtimes.blogspot.com/

and finally but not lastly, No Empire, No More at http://noempirenomore.blogspot.com/

Thank you.

A post from Tracey and my response:

http://traceyslifeandtimes.blogspot.com/

Tracey is an amazing woman She took in two children to raise and love as her own when her friend was diagnosed with MS. I mean WOW. Well...Wow. How many of us would do that? Come on, rise your hand...yes, up, up, I don't see too many hands do I? Thought so. It takes special people to take in other people's children, friends or not. And Tracey is one of those special friends.

I don't know how we "met". Maybe she does. Probably thru Braincheese since everything happens at Braincheee's place. Yes, that must be it.

I am somewhat over my emotional meltdown. I think. I have two children, and one has become a star in the sky. Well I don't know if that will work either. I will have to think of something less cheesy... I am not a cheesy king of person. I am a say it like it is kind of person but I don't want to hear *gasp* either. You know? It makes you want to jump out of a window or something. No, don't go 911 on me. Since so many of you have written to me of your loss as well, I shall share what she wrote me. (and yes she gave me permission)

She said:

Hey Sherry I just want to say to you that you are the one who deserves a huge accolade for being able to put yourself out there. You have found a venue on your blog that allows you to be able to put into words that which you are feeling, and allow us in. I consider it a privilege and a honor to know you. Your faith and your spirit inspire me to keep going. I know you have said that you feel similarly about me, but ya know, maybe the universe meant for you and I to discover each other's presence in this world so we could support each other when needed. I count you as a friend and a blessing to have in my life. With respect to Nicole, I will say to you that no one, and that means NO ONE has a right to tell you how to grieve, or what to feel. You will feel what you need to feel when you need to feel it and not one minute sooner. It will take you as long as it takes you to grieve her passing. Time may make things less painful, but you will never ever forget her and I know that you do know that. Each of us has our own story in relationship to other people, and therefore each story is unique. Each grieving is unique and should be honored and respected for it's uniqueness. Some people come into our lives and leave footprints on our hearts and we are changed forever ( a saying I heard, and cherished. Nicole left footprints on your heart and you are forever changed by her) NO one can possibly know what you are feeling, but we can only imagine what you might be feeling. Some will reach out to you, and others do not have the words, so they choose to say nothing. Not right, not wrong, just what it is. I truly wished that you lived closer so I could come and give you a hug, If I did - I would wrap my arms around you, say nothing, but just let you know that I am here for you. Since I can't just stop by to give you a hug, let me tell you that I am envisioning giving you a hug, holding you close and wishing you peace in your heart. I am here for you in Internet land, and feel free to call if you ever need to. You can text me too if you want. Peace and Hugs to you Sherry I care............... Tracey Thank you, Tracey. I have indeed met a lot of very special people since Nicole died. I think I even blogged on the topic in a joking way, saying I was tired of meeting all you special people- that three strikes, you're out! I mean come on...losing three people in two years is a bit much but wow your daughter, that was a below the belt hit. I am still reeling. It still feels like yesterday. And it will...for a long time.

I think of all the elderly people she took care of. My dad. My grandmother. Grace. The people at her memorial were astonishing in their age ranges. Her best friends were as old as 76. Seriously best friends. I understood that. I have had a best friend like that. Her name was Alice and she was in her 80's. Anyway.

As I drove by where she used to work as a houseparent for an assistant living home, I wondered if I should stop by and tell them the news. I decided not to. Why upset them? Let them think of Nicole with fond memories....free and happy. Yes. Nicole loved working there but the challenge of cooking for 12 adults befuddled her, oh it did. "MOM! How do you fry chicken? And it has guts, oh mommmmmy!" Guts? No...those were gizards. Geez. I'd try to coach her on how to cook...over the cell...for 12 adults. Or my mother did.

She ended up getting fired and it was because of her cooking. What can I say? Any child who thinks a whole chicken comes with guts intact has something wrong with her. That's all I know to say. She deserved to be fired. Yes she did. She really could not cook for 12 adults but she could mother those houseguests to death and was very good at that part. That's the sad part.

Well, it happened again. "How many children do you have" (what, am I wearing a t-shirt stamped with asked me that question, please?) and I said I have a son, 27 Andrew and my daughter Nicole who died in June and she was 34 and I just stopped the conversation. Yes, a *gasp*. But. That is how it will be for now. He said "I'm so sorry for your loss" and I said that's okay you didn't cause it (Gee that's a little funny) and he laughed and said no...so. Maybe another answer for a different situation.

Mom also texted me and told me of some things she found that Nicole had kept of Andrew's. He will be thrilled when he finds out.

But for now that will be my answer. It's not designed to spread pain but to honor her memory. And if you ask a question, be prepared for the answer. I might change my mind later, I don't know but I doubt it. I can't see myself denying her existence, ever. Not ever. I have to learn how to say I have two children, and ..... without wanting to jump out of the nearest building. And no. I'm not about to. I said..wanting to. Not going to. Big difference. So settle down, little children.

Many have lost their children too but never did I dream I'd be on this road. NEVER.

Besides I have to pick up my earmold on Monday. YAY. I am sooo glad. Listening to it give me its opinion all the time drives me crazy. (it squeals) Besides I get sores- kinda like bedsores. I have no time to jump out of any buildings. I'm merely stating the difference between what one feels like one wants to do and what one plans to do. A huge difference. I have no intention of jumping! That would be quite foolish, quite painful and piss the hell out of my mother. And most importantly, upset my son. THAT...is the most important thing! See? Priorities.

And back to Tracey- I keep thinking of her and how she took over raising those kids (who still has their hands down, yes I thought so) and admire her mettle. And for that, I'd like to award her the inspirational blog award. Please stop by and pick it up!

A cognitive snag I have hit...

My son is not 26. He is 27. I just got out the calculator. I never argue with those things. I understand the principles of math, I just cannot do the functions in my head. Such is the world of MS. Don't ask me to add anything. I can't. But give me the calculator and I can. Oh-kay? That's MS wiring for you. And a little FYI...when I was in high school I was not that way. Algebra was not a problem. So something transpired between high school and adulthood.

Where the *bleep* did that year go? I want to know. I mean I thought he was 26. Suddenly he's 27. That means he's going to be 28. That means I'm going to be 55. Oh wow. Now I qualify for the Senior Discount at I HOP. Woot!

The local Colorado Springs MS Chapter found me a dentist for my dental work from damages for the two remaining teeth. They are still loose. I am soooo glad. I received notice today. YIPPEE! I believe I start next week with my appointments. I am glad. So glad. It will be nice to put that one to bed too.

And I thank the Chapter for that support as well too. Oh yes, I do... and if you're so inclined, donate to the MS Chapter:

http://www.nationalmssociety.org/chapters/COC/donate/index.aspx

Without them, I'd be up a creek. Literally. Donate, my friends. Really. :-P

How many children do you have?

Two. One died a month and a half ago. *gasps*

And one is named Andrew and he's 26.

I can't deny her existence, can I? I can't say I have one child. I can't say I have two. I can't say I have one and a half. What can I say? The truth hurts, doesn't it.

Think about how many times you are asked how many children you have...it's more often than you think.

Today I say "Thank You"

Thank you!

To my family, everyday friends and Internet friends who read my blog and send me TONS of email I say thank you today! Your support has been invaluable. Without it I would be a sailboat without sails, an airplane without wings, a car without wheels, toast without butter, okay you get it..... Wow.

One of my relatives whom I will not name for privacy's sake sent me an email yesterday- it was so thoughtful. She too, had lost a child. Her first child, a beautiful baby. The circumstances were different but it was still her child so she understood. She said, "I'm going to you permission to lie." Lie?

What she was saying is if someone asked me about Nicole it was okay to say "she's fine or whatever" and I did not have to tell the truth. Like what happened yesterday at Ulta. I will try that approach and avoid the whole meltdown thing if I can. It is too soon, too new. It has been 51 days since she died. I feel no better today than I did the day she died. I am her mother, I gave birth to her. I have too many memories. I am still counting the days, yes. I hope it stops..the countdown clock one day but it has not yet.

Back to saying thank you, my MS brain has digressed...
and I hate, hate it when that happens!

Your support has been invaluable. I'm astonished at the amount of email I've received as well as the comments. Each and every one is appreciated. You have helped me heal along the way. I am not healed yet, no. I never will be. They say a mother who has lost her child never heals but learns to live with the loss. That is my goal, to learn to live with my loss. That I have not done. I think of her immediately when I wake up. Nicole? Are you there? No answer.

My journey is made easier with my family and friends as support. I thank you. Again and again.

And thank you my blogger friends for the new awards. Much appreciation....

Makeup doesn't cover scars of the heart

I had a meltdown at Ulta a bit ago.

Ulta is a place where women congregate to make purchases for items to make themselves appear better in the mirror after they wake up. Or to get their hair cut like I did.

I forgot my hairdresser knew Nicole. *ahem*

When I sat down in the chair with my sopping wet hair, the cute bubbly thing said, "How's your wonderful daughter"? NO. Don't go there....but she already had. Instantly I had a meltdown. My perfect makeup job was ruined. Just...ruined. I had to focus on things like makeup jobs, the fact I was planning to go to the drug store later to pick up denied prescriptions (yes two of them were denied) because to think about Nicole right then and there would require an ambulance to pick me up and carry me off to a Medicare approved compound and I simply did not want to think about this. I had dogs at the apartment (I am dog sitting) waiting for me and rent to pay and Copaxone to be delivered and.... and...and...a nervous breakdown right now would so not be good. It would be so easy to break down right now. Very easy. Poke me just so and I will break...but please don't. I have had enough of this existence called "life". Right now I am coasting. That is asking a lot and no this is not a cry for help. I am not about to do myself in so no 911 calls. Coasting is okay. It is.

The hairdresser really felt horrible but she was simply making normal conversation. I do not know what I said but I did say something like she had died, and ummm...let's do my hair and that I had to get out of there...fast. She gave me a hug and that made things worse. Yes it did. It shouldn't have but it did. Crying is never pretty especially when you are at Ulta with all the beautiful people.

I think one of the reasons it was so hard is Nicole was such a makeup freak. Anything to do with makeup, you would find Nicole right in it. Me, well...I can go with or without it. Makeup R US, she'd say. No, not I, I'd say. Mom, I need this, she'd say. No, Nicole, you have plenty at home, I'd say. I used to call her a crow. Anything shiny, spiffy and makeup-y, she had to have and she'd pick it up and make off with it.

I inherited all her makeup. With all her good tips at Massage Envy she managed to buy the most expensive makeup ever...and she has the most exquisite collection of makeup brushes I've ever seen!

I don't know what to do with them....as in how to use them. They don't come with instructions ya know. I guess they think all women are born knowing how to use makeup brushes. Well...this momma does not know diddly-squat about makeup brushes but she does know she has a very expensive set of brushes. Including one fan brush that cost at least $45.00. A fan brush? It's TINY!!! And no, you don't cool yourself with it..you apply something to your face with it.

This is a fan brush

I remember in San Antonio when Nicole had to go to a massage therapy professional show and she came home with more makeup and toe rings than Ulta even sells. As Poppa (my dad) drove us back home, I asked her what she planned to do with all that makeup; she said wear it Mom! OOOOOHHHHHH!

Now Poppa, Nanno and Nicole are twinkling stars in the sky- all three are gone from my life. I am left behind with makeup and brushes. I am not satisfied with that. It does not cover up the scars they left me with.

Is it winter??? And why is it *beeping*???

When I went outside in my jammies (all covered up in a robe...don't think I went outside uncovered!) I was astonished to find I was freezing to death! What? It was 50 degrees and since I had been tossed out of bed by a cranky daschie demanding to go potty I was less than thrilled. The sudden temperature change (think: warm bed to 50 degrees in less than a minute) was akin to being thrown into a freezing lake. Of course when I got back in Gini Ginobili made a beeline for the covers. Brat.

I was left stranded at the empty coffeepot. Lacy, the golden I am dog sitting for a friend said nothing except I have a fur coat, so there.

I see I have lost more weight. My jeans are now falling off. I am now 8 pounds from my previous weight. By "previous weight" I mean "before MS and steroids". I have dropped down another size.

I am not trying to lose weight but since I no longer take steroids (take that, Dr. House!) combined with the stress of my daughter it has been rather easy. I have no appetite. I forget to eat. Yesterday I had my angel food tv dinner in the microwave heating up and about 45 minutes later I thought what the heck is that *beep, beep, beep* sound- nope, it's not my phone. Nope, it's not the other phone. Nope, it's not my clock. Nope, it's not the computer. NOPE, NOPE, NOPE!

Tracking sounds is not my strong point. Keep in mind I am deaf. I hear it with my implant but that does not mean I recognize what I hear, nor do I know where the sound is coming from. But hear it I do... *beep, beep, beep* I hear...only my implant hears it, my hearing aid does not. Amazing technology the implant...anyway I digress.

My nose then starts working. It's the microwave. My now cooled off dinner was done and the microwave was beeping. Oh. I forgot I had my dinner in there. Blah. I reheated it and kinda nibbled at it, stirred it around, nibbled some more. Food is so unappealing. I eat to live. I don't live to eat.

I never thought I'd say that but I have said it. Odd. Now take me to an ice cream shop I'd probably go wild....ha.

It's freezing today. That means I have to go get my thyroid checked since I can't get warm. I keep putting it off. And I keep putting off getting my implant reprogrammed. And I need an appt. with my urologist since Plan D does not cover Vesicare like my handbook said. Another change since July 1....fiddlesticks! What are they doing in Congress??? I thought they had to VOTE first!

I have no desire to ever see a doctor again but that won't happen.

Today I'll get my hair cut. At least she isn't a doctor! Then if I feel like it, I'll go get me a pair of jeans that won't fall off in public! YES!

....on gray hair

I need to dye my hair but I loathe to do so. Tomorrow I have an appointment to get my hair cut (YAY) maybe my hair will stop ending up in my mouth. We can only pray.

I need to dye my hair. Cousin Tracy did it the day of my daughter's memorial last time. It came out perfect. I bought the same stuff but I'm glaring at it this time. I always miss all my roots and THAT is where the grey resides...in the roots. Not at the ends!

I think I'll wait till after my hair cut before I dye my hair- for one thing, there will be less hair, I'm not doing anything drastic but I am going to whack a an inch or two off. Not enough for locks of love but enough to say thank you for staying out of my mouth!

Dying my hair is a PITA. First you have to sit under the hot bathroom lights (anyone watch that video below of the nailed shut window?) Well, my bathroom is like that. HOT. So, all the lights are blaring down at me while I am trying to find each gray root in which I need to apply hair dye. Meanwhile I know if I miss my mark(s) two things will happen. 1.) my hair will remain grey 2.) I will faint and splatter hair dye everywhere. Plop goes the red skunk!

In addition, I have to walk around deaf as a wall for 25 minutes feeling like a wet tapeworm while gooey stuff is on my head. I so hate that feeling.

It also reminds me of my daughter as well cuz she dyed my hair quite often. Many, many, many times. And I hers. I miss dying her hair. She had thick, thick gorgeous brown hair and why she wanted to dye her hair is beyond me. She liked changing her hair. I merely want to cover my grey. OR go 100% grey but I haven't figured out how to do that au naturale. In other words I don't want to grow it out.

I had so much email today. Thanks.

Everybody loses...

Not guilty, the jury said. Okay, I said.

I know what happened and so does *it* but the jury spoke. Nobody wins or loses. Families, friends and children are shattered. And that's all I have to say on the matter except everyone, and I mean everyone lost. There are never "winners or losers" in situations like this.

Back to life. Right now I'm fending off all my angry friends n' stuff. Don't be angry. Move on. You see, the worse thing that could happen to me happened...that was losing my child. It was all I could think about during court. Nicole. Just Nicole. I found a quote she wrote: (actually, I just opened her diary and there it was)

We must enhance the light, not fight the darkness.

We have all the light we need to find our way out of the darkness but we have to find it and put it into practice. Losing a child is not easy. Today it is especially difficult. I feel a need to talk to her desperately.

I was buffaloed this morning when I started to send her a text message and then realized...I couldn't. Then I thought well...yes I can. So I did. Where it went, nobody knows. I like to think she got it. Her cell phone has been cut off but her number is still stored in my phone.

Back to MS. I see Vesicare isn't covered by Plan D after all. Another change since July 1. Okay! Time to go to the urologist. DAMMIT.

Multiple Sclerosis - SABOTEUR

This is very good....



Watch it very carefully....slippery slopes, stairs, tacks, Vaseline on glasses, dimming the lights, switching the hot/cold water, nailing windows shut, wow!

I think it's great and to the point. No pun intended.

Nature put on a light show this afternoon

and immediately I thought of Nicole. Her favorite weather, thunderstorms. Mine too, next to wild snowy blizzards.

Add a Yankee Candle and lots of trees- serendipity!

I'm sorry I ate your cake, Aaron...

Project Angel Heart delivered this morning. A fella said "Happy Birthday, Aaron!" to me and pointed down to the sidewalk. Before I could say a word he was gone. Mystified, I took in the goods. Inside was a buttercream (oh.my.yummy-o) cake. I don't know what kind of cake it was, just know that the frosting was genuine buttercream. That is all you need to know. Buttercream.

A card was attached. "You rock, Aaron!" it said. I looked at the name on the bag. Nope..my name is on the bag. Who the heck is Aaron? It's not even close to being my birthday so it's not mine.

Whoever you are Aaron, "Happy Birthday". I am enjoying your cake and I did report the missing cake to Angel Food...so hopefully your replacement cake will be on its way next Saturday.

(how many calories are in buttercream frosting, yummie-o)

Copaxone: What gives?

It has changed.

Or has my body changed? Those on Copaxone- have you noticed anything different???

Something is different about Copaxone to me now. It burns, bites, stings and drills like a fire-hot radioactive bullet I've accidently shot myself with- what gives? The welts are huge. My technique has not changed. I did read online that the needles are 19% smaller, only I didn't know it.

I wonder if the needles are "Made in China" and have some sort of irritant in it- okay that was in jest but!

Something is different. Very, very different. It's either me or the Copaxone.

Ramblings of a shorted-out wire

There they are again- my annoying toes. My MS Hug is bothering me again.

Zing! Zap! Zing! Zap! It is really annoying...I cannot make it stop. As long as it does not go further I will be fine. Vesicare is not working as well. Harrumph. So. Now what? I don't want to poke the Medicaid-to-be'er waiver-to-getter beast just yet because portions of it are under the wrong name and I'm still awaiting full approval. I have received functional approval- a biggie, yes. Still.

The name problem- just portions of it is a problem. Not all of it. It's that their computers don't talk to each other. Ya know, like the FBI, the CIA, the DOJ and so forth. We do not have our Homeland Security for the Medicare/Medicaid problem.

The thought of taking care of each issue makes me tired. I actually need to see three doctors. One for my thyroid, one for my vesicare problem (ok- the urologist) and the audiologist to have my implant re-programmed. It needs a major tweak. Prolly the Neuro too. Okay that's four. My thyroid is out of whack I know. I can tell by my hair. When you need to catch your hair so it won't stop up the drain, it's time for a lab test. It is high again, meaning hypo.(the results are the opposite when it comes to reading results. don't ask me why) It was hyper last time. See- I told you guys. Having a brittle thyroid sucks. But stress effects MS and thyroid levels. I'd say life has been stressful lately.

At times I think my thyroid is a bigger issue than MS. Yes I do. But not this time. Right now my MS is a bigger issue cuz I am tired of the Zing! Zap! Zing! Zap! in my toes. And the anaconda around my chest. Throw in a dash of plumbing problems and knowing darn it, Vesicare isn't doing the job anymore. Now what? Up the dose or ? I do know I am on a low, low dose. I see it's covered by Medicare Part D so not a problem. This is the problem.

The urologist is a terrific doctor. He's funnier than Seinfeld and nobody is funnier than him. I love that doctor. I'd run off with him if he'd have me but he's married to my dermatologist. So that poses a problem. Anyway he's the kind of doctor that talks to you. I don't want to talk to anyone and he will know right away about Nicole. I don't want to talk about her with him. I don't know why. That is a strange reason not to see the urologist but it is the reason I don't want to go see him OR his wife (well she doesn't talk much so she's no problem) for that matter. But he met Nicole. Nicole went with me and sat with me thru all those tests. At least he moved. That should ease the pain somewhat since the surroundings have changed. (but not really)

It is odd. It is as if I am resisting the urge to return to life. Does that make sense? It is too soon. She just slipped away from me. I can still smell her. I can still feel a physical heaviness of loss. I can't explain it. She is gone and it is a tangible loss. Nothing matters anymore. Nothing. It does not matter. I cannot explain my loss. Life goes on. People pass me by at Walgreen's, I fill up the Jeep at Diamond Shamrock. It's as if nothing changed but something did. She is gone, fellas I want to scream.... but I don't. I put the pump back and drive home. Life goes on.

Come to think of it, I am overdue (sorry Mom) for my checkup with the urologist's wife. Okay that's five appointments. Hey wait- no, make it six. It's time for my annual mammo! HA! I could go to a doctor every day, one a day for six days in a row. WOW, I am behind on my life.

"My life"? Did I type that? That cracks me up suddenly.

My zinging-zappy toes and MS Hug reminded me I guess I still had a body. As if. I'd rather not be reminded, thank you.

Anacondas and hugs

It is strange when you realize that different people have a different collection of photographs of your daughter. "I've never seen that photograph" I said to Mom yesterday when she showed me a picture of Nicole with my brother. I knew the setting- I remember the day. We worked together that day and we both complained about having to appear in a publication together.

Neither of us wanted to be in THAT publication. In short, we whined together behind my mother's back. It was my parent's retail store and we both worked for them. We hated being photographed for advertisements n' stuff. I don't know why, we just did! I remember walking with her down the long barf green hallway to the Tea Room with .50 each- she and I were whining, whining and whining... "Why do we have to be photographed in the ad, blah, blah, blah, why can't someone else be in the ad, blah, blah, blah..." and we got up to the front with our mutual whines where Colleen the hostess was ever ready to take our .50 and whine of the day. She so agreed we should not have to pose for any "ad" if we deemed ourselves unfit for duty. She was like that. So was Lisa and Kim, the two who worked at the Tea Room. They were Nicole's best friends.

Mom said I was the Alley troublemaker and I was. What she does not realize and she will now find out when she reads this entry is Nicole and I tagged-team on deciding what was good, what was evil and how we should combat said evil. We plotted and plotted. I was the fall guy. Nicole was the innocent angel who could do no wrong. It was okay with me because I was her mother. Mothers are the ones who let their children be perfect in their grandmothers eyes. NOT.

Back to the photo. Instantly I was in tears. Tears are not good when you are dealing with the MS Hug problem. I have been having that problem for a few days now. It comes and goes in waves like an anaconda snake (I'm more scared of THOSE than the other kind- the boas) that's made a home around my chest wall.

Squeeze and release....squeeze and release. Cough, inhale and release. Repeat.

Anyway. That was how my day ended last night. The discovery of never before seen photos and the slight escalation of the MS Hug problem. When the hug retreats, it retreats. When it hugs, it HUGS.

Wait. Hugs? I beg to differ. It does not hug. It is like someone laying you down on the ground and putting an anvil on your chest. That's what it's like.

I have to go back to Room 101. I shall take up residence there. I want mileage!

"Elderly, Blind and Disabled", it said...and that lady!

Oh wait. They're talking about ME. Yes! Me! Moi! Yes!

It's my Medicaid Waiver thingie. Clearly printed across the top that is what it says!

I will have it once the paperwork is studied under their microscope. They have it now. Although I am sure if they can, they will find a missing form. Okay my fall from the Ivory Toothpick Tower is complete. I have landed and am good to go.

I learned today that grief makes one rather anti-social. I went to Walgreen's to get coffee and milk. Can't you get coffee and milk at the grocery store? Well yes...but I didn't feel like going to the grocery store.

I did not want to see that lady.

I always see that lady at the grocery store. That lady has been at King Soopers since I was pregnant with my son and that was at least 26 years ago. I remember walking in with my daughter in tow and that lady ringing me up. I don't want to be rung up by that lady ever again.

There is nothing wrong with that lady. She's very, very nice. It's just that....I remember being pregnant with my son, after that- my son being in old enough to sit up in the cart and Nicole pushing him around and that lady ringing us up. Ya know? And of course I live across town and that lady works at MY King Soopers. Not the other one that we used to shop at but this one! So yes I feel very decidedly anti-social.

Besides people don't know what to say. Well, think about it from my point of view. I don't know what to say EITHER. I have no experience at losing a daughter. I wasn't expecting to lose my my daughter. I was expecting her to watch my Macy's Makeover. If you read thru my blog you will see I was talking about her. People pointed that out to me. Yes, I know. I told her all the time, "I talk about you on my blog and HA you don't read it" and she was like "oh pooey, what's a blog." but she was on the internet all the time.

She would NOT Facebook, would NOT myspace, would NOT email, would NOT MSN. She was into "new age diddidly-dooddlely" as I call it. Ya know..reading Chopra, Turtle Wisdom, writing down quotes and looking up odd symptoms and what not (I called her an hypochondriac, yes I did) because everything was a problem for her. I mean she'd whined about a pimple on her thigh. She'd whine about her hangnail. I'm serious. I would roll my eyes and say "Nicole, it's a damn hangnail, get over yourself girl..." and she'd just MOM me.... so of course when she started coughing I thought oh well, another summer cough.

My fatal mistake. I thought I was dealing with something minor. Do you think I would have gone home had I thought she was going to die? No.

So. I don't know what to say either. It's okay to say that too. It's not okay to be that lady I guess.

Mourning is one of those...

constant reminders that things will never be the same again.

FedEX arrived with my daughter. Yes, as in arrived. In a box. :-X

Ironically Mom and I had all her jewelry scattered on my bed at the same time. We were matching up her earrings, pair by pair. We were dividing them up to give away to her special friends. She arrived- a beautiful green fused green pendant on a leather cord. I toyed with the idea of making one necklace out of two pendants but decided not to. I will have two memories to share at different times. I'm taking her to the bead gallery today to affix a different clasp on since I don't trust the one it comes with. Plus I'm going to add some things to it to make it uniquely "turtle-y".

My daughter's pendant is forever green, as planned. http://www.memoryglass.com/pendants.asp

Yes I know- very unusual. I did this for my father, and did this for her. The eerie thing is-she asked me in May to order one of my Dad for her. I said I would. My Dad's cremated ashes are still at the house since we have not done anything thing about it. I had not gone to his memorial service due to my MS flare-up at the time. We had planned to place his ashes at Sam Rayburn Lake but it never came to be. We have decided it was meant to be, he is to remain with us instead of "forever fishin". Sorry Dad.

I found her charm bracelet in her jewelry collection- "Sweet 16". On the bracelet was were mementos of her spaniel, her cat, her friends- oh had I forgotten! Also found were her amethyst ring I gave her when she turned 18. The stone is loose- I need to take it in to be tightened. I wish I could give it to a certain someone but it won't happen. She does not care. I will save it for another.

My high school graduation ring was there too. Yes! It still fits! (HA!) Even my brownie pin- OMG. She was a pack-rat. I was never big on jewelry (but I always wore my wedding ring, big whoopee-do, we see where that got ME) but my daughter, boy she could clean out a jewelry store in no time flat. All I know is I have cried a lot. AND...

I now have more jewelry than I have ever had in my entire life.

The District Attorney called. I have an appointment Thursday then court begins on Monday at 9 am. for spousal abuse charges filed against *it*. And that is all I will say about THAT until it's over.

This has not been the best of summers. Will winter come, already? I am ready to ski. I have stress to release and skiing is free.

My two second cousins!

Carolyn looks like she acquired
some feathers from Big Bird...
(well her shirt is the same color as the bird behind her!)

And Addison...
with her piggie tails!

Aren't they precious? I think so too...

A message for the Facebook Masquerader

YOUR account pretending to be ME has been removed by Facebook authorities.

YOU are being investigated.

When the investigation is completed- I will be notified and I will take action. Oh yes, I will.

How dare you pretend to be me?

*....blah, blah, blah twitter..."

Do you twitter?

I don't. Well. I guess I *could". I think I have an account somewhere but I dunno how to access right this very second. I keep seeing "twitter" on the news but as I told Mom, "nobody twitters except certain old farts."

She disagrees.

So. Do you twitter? Please respond. (ages please) A war is raging within the confines of this dwelling called an apartment.

It was the 8th day and .....

I am done. I turned in every scrap of paper I could possibly find and then some. Even the desk clerk was impressed I do believe.

I am a fully documented applicant for my Medicaid waiver. I have been passed on to the financials sector where they are to pour over my pithy wages and lack of spending habits.

I also picked up my scripts at Walgreen's I and found out as of July 1st two of my regular prescriptions are no longer covered under Medicare.

WHAT????? My copays for those two jumped from $8 to $56 a month since it is no longer covered by insurance. They are mandatory prescriptions too. One is my HRT patch (hormone replacement therapy for you men) but oddly enough I noticed premarin is covered- geez, I get migraines on those fellas...and they're more expensive that estradidol but who said the government wanted cheap. HA!

The other is my generic valium which I take instead of klonopin which is more expensive. I have intentional tremors and besides we have to keep the little people in my head from talking. I wonder how many of you will take the last sentence seriously. :=p

I wonder what else will be denied by Medicare Plan D. I am afraid to check. :=o

I need a doctor's appt to get my thyroid checked but the name game change problem continues to persist. I dread having a claim denied. I still have medicare under my former married name but my Prescription card under my maiden name. My social security is paid out under my former married name but my number is under my maiden name. Supplemental and hospitalization are under my former married name too.

I am quite proud that I can even cite all that from memory but it goes to show you how irate I am with the whole name game thing. I have to explain every single time I stand in line- you would think I was the first person in the history of the department of human services to get a divorce and take her maiden name back. YES. You would think that....

I am mystified at the sudden formulary changes in Plan D. What did Congress do while I was gathering forms?

Live fast, die slow

"Well behaved women rarely make history", I once read. Where I read it I do not recall but I also remembered that one should never live faster than your guardian angel can fly.

My mission to document my life on paper for Medihell in one day fell apart very quickly. I should have been very, very, very bad. I should be in debt. To my eyeballs, up the yahoo for our Uncle Sam. I should have done Crate&Barrel, Origins, Black&White, Brighton, ad nauseaum.

I am entitled to be in debt
like every American!

The fact that I am not shows you how little value our government places on staying out of debt and rewarding those with debts. Maybe I should start responding to those credit card offers and contribute to the economy so it will be easier to qualify for more entitlement programs.

That is where my bailout is. Suddenly I feel like a Libertarian. I don't like this.

Everywhere I go, there she is

I decided to join Shelfari this morning. When I did, there Nicole was. Along with my EX (no, not that *it*, he isn't even listed in my email contacts anymore, HA!) and "Did I want to be friends with her?"

Yes, please.

Getting ready for Medihell- again

Today is medihell day.

I have to gather documents.

I have to document myself. HA. I must gather up all tangible evidence that I am indeed, poor. Wow. Can I show you my bank account? NO. Big Brother wants the following:

1.) A copy of my Jeep loan. (Yay, I know where that is!)
2.) A copy of my lease. (Yay, I know where that is!)
3.) A copy of my utility bill. (Yay, I know where that is!)
3.) A copy of my SSDI payout from three years ago. (Yay, I know where that is!) But don't they have that already?
4.) A copy of my Jeep registration. (Yay, I know where that is!)
5.) A copy of my tax return. (Yay, I know where that is!)

Anything else? I mean we're starting to develop a long-term relationship here. It's not like my life isn't on their computer. (it's scary- they pull up my life on their screen in living color)

Big Brother already KNOWS.

The Paperwork Reduction Act means nothing here or did I dream that? Nope; I checked! It's real. http://www.archives.gov/federal-register/laws/paperwork-reduction/

It's all a lie, lie, lie. They really want more paperwork! They wants LOTS OF IT.

This should do it

I will do my best to load up my Jeep to resemble the above picture. Yes. I will. Just to make them happy!

YES!

Facebook

For those of you who are members of my Facebook, a warning: I do NOT have two Facebook pages! One has a "whiny bastard" badge with my grandmother's photo posted after she died and talk about TACKY and CRASS... whoever you are, you are scum for creating a fake FB page and pretending to be me. I'm not going to mention you again because I don't want to waste any more words on you.

It wasn't my page. I only have one Facebook and it is nothing but silly stuff and a way for family and friends to keep up. The fake Facebook page shocked me silly- how anyone could be so spiteful is beyond my comprehension.

My facebook has MY photo...with a daschie. The fake FB has a whiny bastard button and all that person did was whine, whine, and whine.

Go away.

Archaeological records

Mom read out loud from Chopra, "Have you hoarded so much junk that your environment is like an archaeological record of your past? and then said "it's true and I want to keep it that way".

I laughed.

An archaeological dig

This whole place is an archeological record. Everywhere you look there is something. Nicole's books. Andrew's books. Andrew's jeans. Nicole's turtles. Andrew's book report. Nicole's note to me when she was 15. Andrew's letter to me when he was 16. There is nothing in this place untouched by a memory. The huge armoire in the living room has memories. When the twins came over we talked about how they got locked in there and I couldn't hear them screaming their heads off to get out. Yes- archaeological records, everywhere.

I still have hair from each child's first hair cut. Jeannine, my cousin was the first to cut my son's hair. I declared myself the memory maker, memory keeper and memory preserver. I made scrapbooks before scrapbooking became a thing, a following, a cult or a whatever. Before the word "acid-free" was stamped on every package, sticker, ribbon, glue and tape.

All I knew was what I made did not have to last one hundred years, it only had to outlive me. The kids could care less about my efforts- "Whatever, Mom" as I saved every candy wrapper I deemed worthy of the archaeological record I was going to preserve for each child. I did notice they would take out their treasure troves every now and then to compare. Of course Nicole thought Andrew's "pouch" was way cooler than hers. I told her to stop whining, she didn't like these kind of things anyway and they were for me. HA. Truth be told, Andrew's pouch DID look like Nicole's personality and she knew it. It was not planned that way it happened that way. Andrew's pouch had more *zap and zing* in it, hers was more prissy since it was made with pressed flower paper. She was...not prissy. She was always *zap and zing*. Ok..I messed up her pouch. I'll take a lash for it.

So you know- their pouches are made of homemade paper- sewn on the sides, lined with homemade paper (too) and all sorts of "stuff" were done to the pouches. When you have scrapbooked all your life you find new ways to do things I guess. I was tired of glue sticks, acid-free or not.

I liked to torment the kids by putting things in secret envelopes inside other secret envelopes. I make them work for their archaeological records. It takes time to properly peruse a scrapbook whether you are a child or an adult.

I found one scrapbook I made; I put it back for another day. It was a scrapbook I made for my daughter's "future child" about her mother. A compilation of silly stories that my future grandchild could possibly blackmail her mother (Nicole) with. I was ratting her out. A scrapbook to my future grandchild, that won't be born.

Suddenly I remember there were a series of files on my computer- off to search I went. Yes. They are there. I had written each child an ethical will. Nicole's was intact. I hover over hers- should I keep it or delete it? It was personal to her. I deleted it, forevermore. It was for her. I also deleted my stepchildrens as well since I've been erased from their lives as if I never existed.

One child I have left now, a son.

Ethical will, you ask? http://www.venturacountystar.com/news/2007/apr/23/ethical-wills-skip-the-finances-and-share-lifes/

Mine is more personal- stuff I want to say to my son after I'm gone.

Last night we had a birthday party for Kallie. She turned 21! A milestone birthday.

Kallie is 21!

Mom made an upside down right up pineapple cake (trying to turn it upside down-do you really do that, we asked each other?) sounded impossible so she improvised...and it was good. Since I had not eaten all day I had two servings. Andrew laughed at me as one serving slid down my pajamas. (he whispered "Mom...just RUB IT DOWN"....) Yes son. Rub it down.

Happy birthday, Kallie.

The unexpected

Sometimes you find unexpected treasures from your daughter.

I opened one of her books AnOther by e.e. Cummings and I see she has bookmarked a section. What? My daughter? Interested in erotic poetry? HA. Get thee back down here, we gotta talk girl...

Damn.

The wailing headboard

I woke up this morning with tears and a heaviness- again.

Don't take my tears from me. I am not ready to relinquish them. This is my daughter I am missing. Not a hamster or a goldfish. My daughter.

My headboard has my dad's ties and my daughter's scarves and belts draped across one section. This setup was not planned. I casually put Dad's ties there when I moved in, not knowing my daughter was going to die- then when I flew back with some of her scarves and belts, well. I guess I added them to the wailing headboard. I don't know what else to call it.

The ceiling fan was on and both my dad's ties and her scarves were dancing in the breeze as I sadly watched.

I wondered what my dad and daughter know. Are they together? Are they watching over us? And in what form? So many questions, no answers. They are not found on my bed's wailing headboard.

I have all of Nicole's makeup brushes. I hear her voice say "MOM, NO! Not like that! That brush is for your eyebrows, not your eyelids!"

I miss being corrected.

Youtube MS'er

Oh-kay, so she cusses more than moi. Still. Truth be told my inner child cusses more than she does.

I think this lady is really funny. She has Multiple Sclerosis and her videos on makeup, dating and all that rot make me think of my daughter and I on a really laid back day.

Of course that was after the house figuratively burned down and all- when both of us thought life was stable. Like me, she did not know I was married to the shark masquerading as a dolphin but we both got out of the water rather fast. Her first question to me was "How did you not know?"

My answer was simple: "I trusted." She said to me something so profound, it still resonates to this day... "Mom- keep what is worth keeping and with a breath of kindness, blow the rest away and move on..." and I said I would. And I have.

But then, she died....

I can still picture her face on her new red couch, her swollen feet tucked under mine as we talked- her chronic cough worried me but I had no idea it was to become a virulent pneumonia that would claim her life with the ease of an eraser. This was my child. She has always been a part of my life, how can she not be part of my future?

I do not know what it is like
to not have a daughter.

Nicole was someone I always talked "girl stuff" to. Bridget Jones sort of stuff. The MS Makeup Hair Hell/Dating Hell kinda stuff.

I've lost that.

Don't do this!

I admit it, I am very distracted. My mind hops from subject to subject. It cannot remain on any one topic for long.

BUT.

This morning took the cake. I had my injection firmly planted in my thigh when I became distracted by three things that happened at the same time. One, I started coughing- I'm having trouble swallowing (again) two, my toes are ZINGING, ZINGING, ZINGING, and three- the news had another "breaking news alert" (oh again?) and I let go of the injection. When I remembered (it started stinging) I saw it laying down...OOPS.

Don't do that...just don't.

When you let go of a syringe that is firmly planted in your thigh, guess what it does...it does not remain upright. It lays down, needle and all. Yes. Needle inside too.

OUCH. OUCH. OUCH.

The Girls Guide to Hunting and Fishing

From the inside cover: "Wear your hair long...Don't say 'I love you' first...Don't accept a date less than four days in advance..." and above all, "Don't be funny!...Men like femininity," Faith says, crossing her legs, "Humor isn't feminine..."

My daughter and I were Bridget Jones fans. We thought love and all that rot overly complicated but we didn't understand WHY. We only knew that it was so.

The funny thing about my daughter is she was so loving that now when I look into the world and see an act of love, I see my daughter. I can't help it. I see her.

The only thing she and I could not do is be serious about dating and love whenever we talked about that sort of thing. (which was often)

We thought the whole "dating game" was hellishly funny. Perhaps that was our downfall. She never married and I got dumped on my arse as well as my head. Maybe love isn't funny. Maybe it's something to take seriously, like physics- or math. Maybe it's something to study. If so- I'll skip study hall. I have better things to do.

In closing- I shall leave you with this Dave Matthews Band song we used to listen to.

It's Wednesday?

My brain popped the breaker box last night.

Non sequitur. Terra incognita. Agent provocateur. Ad infinitum. Deus ex machina. Non compos mentis. Lumpenproletariat. I'm speaking in tongue now. Don't anyone be surprised.

It is not like one can go thruough changes of this magnitude and come out on the other side unscathed. You'd have to be a Dummkopff to get away with thinking I will be the same Sherry as always. I made a bona fide attempt to reclaim my life but the death of my daughter has made things dolorosa.

Taking a break is not an option and I wish it was.

She has an "estate"

I have to deal with her estate. As in court. Yes, that...in court.

We had just transported her things to Texas. Now they are being transported back simply because I cannot bear to be apart from them. Most of the things are personal and meaningful- such as her jewelry, her journals and books. Her massive turtle collection will replace my now exiled frog collection.

But when you get down to the nitty gritty and realize you have to go to Probate Court because your daughter died it makes you nauseated. I had to ask someone else to do it for me. A mother cannot go in front of a Judge and probate her daughter's estate. It's not possible. Well. Not by *this* mother. Maybe other mothers can but *this* mother can't. I am not that brave.

I can't do probates of my children.

Period, the end of the story.

Emotional outcome: catastrophe.
Physical outcome: looks normal.
What a paradox.

This is my life and all that goes with it!: School, walking and people

Take a look at this guy's blog- he's hilarious!

This is my life and all that goes with it!: School, walking and people

Do you want to rent a parking place?

I went to room 101 today at the courthouse. While there, I suddenly remembered I had an old friend who worked there. After I got done I went looking for her- Unfortunately she was tangled up with motions so she was not able to come out to talk. It seems everyone I know is tangled up with motions.

I used to work with her long ago when we were both in insurance. Yikes- insurance! Yes, I used to do insurance. I even have my certifications in Group Health, Parts A, B and C. I distinctly recall my discomfort when I learned my Supervisor had flunked the test and I had passed. Whoops. But hey, I studied...

That was long before MS got ahold of my brain and shot it full of holes and s'mores.

Then the question comes: Hey lady! You are here a lot...do you want to RENT A PARKING SPACE DOWNTOWN????

That is when you know you have been to court too many times.

Motions and potions

I have to file a motion. What I'd rather do is drink a magic potion that will wake me up from the nightmare I'm in but this is real life. Somehow I lost my daughter and I am still baffled at the ease in which she was taken. She was too young to go.

I am at a crossroads. One path leads to a dry lonely and desolate desert. The other path leads somewhere else but I do not know where that goes. Surely it is better than the desolate desert but I am not even sure, really. I do turn from the path heading into the desert. Where I go- nobody knows, not even I.

So many people have been on this road but it is a road only understood by those on it. The loss of a child is a tangible, physical heaviness. I wait for her to text me and say "Mom, it was a horrible misunderstanding, the pneumonia and all." but of course that doesn't happen. Her phone number remains on my cell phone as does her picture- it was there before she died. She was wearing braids and a cowboy hat.

I see I have changed from the present tense to the past tense. "Was wearing braids"...instead of "is wearing braids".

No.

I have to do something

Emailed Voc. Rehab. Asked for an August appointment. I must get my derailed life back on track. If nothing else, the detraction will be good for me. One step at a time.

My two zinging toes still zing. I ignore them. Let them ring, nobody is home. HA. Zing, zing, and sometimes *beep-beep*. No, not calling the Neuro. I know what she will say. "Steroids, Sherry!" Nope, not for zings and beeps.

Went downtown to see the attorney. I wish those people would go away. Even the mosquitoes leave me alone. Motions must be filed tho. GRRRR.

Room 101 is becoming very familiar to me. I will happy to never see the inside of a courthouse again. Standing in line is becoming old. Everyone has a sad face at the courthouse and you know if you poke them just so they'd explode on the spot.

I can understand that feeling. Today anyway....and probably tomorrow as well.

OOOOOOoooooo!

The two zinging toes! How dare they. They are driving me nuts. They ring like doorbells all day.

Yes I am home!

Leave me alone. Stop. I do not want to be reminded of my toes. Especially two of them. Zing, zing, they go. Shuddup already. I am home, I hear you guys. It sounds exactly like a doorbell- one of those horrid ones from Wal-Mart that zings instead of chimes. ACK.

Plus I need badly to get myself to the audiologist. I've discovered I actually cannot hear. D'oh.

First I have to find out if she takes whatever I'm on so I can get programmed- just like a remote control. It's all computer stuff. I lost interest in how it's done but the reality of it is, it's really quite interesting how they get all the *beeps* to harmonize into some sort of "sound" for those of us with implants. It's more difficult when you've had MS and you've had a relapse on that very auditory nerve. That in itself is another story I shall not repeat. Since then, I've had my share of woes with programming issues but not of huge magnitude. I am keenly aware of volume dips and peaks on a minute to minute basis at times and it can drive me crazy at times. Especially in places where sound bounces. I can't hear anything. What did she say? What? Am I talking too loud or too soft? Pssssst. I can't hear. Especially right now. What happened?

So now two zinging toes and one implant making sounds "bounce". I feel like a bobblehead doll. Yeah. That I do. And so, it goes and nobody knows!

Back to MS

I remembered I had MS this morning when it was harder than usual to get moving. No peep toes r us today.

Plus blow-drying my hair reminded me that hot heads I don't do. I did find it deliciously funny that my grandmother's pink brush- which is at least 50+ years old worked better than MINE. Take that, Ulta!

I have to get my thyroid checked again. It likes to play with my dosage levels as we all know. What are the stats? One in six with MS have thyroid problems? Yeah. Something like that. I am good to go- If the odds are against me, it's going that way kiddo. It is not my time to shine.

It seems I missed LEAP due to my daughter's death so on to Project COPE I go. Another agency. I am not enjoying this feeling of being passed around from agency to agency. It makes one feel extremely vulnerable to the whims of the government's decisions. LEAP to COPE. HA!

The rapid fire pace the current administration seems to be taking on health care is making me really nervous- wait...I have a chronic disease. I have a pre-existing condition in which a long-term plan must be put into place according to Medicaid. Wait! Wait! Wait! Slow down!

I had a social worker come in to discuss getting Medicaid waiver on Friday. I read the fine print online on Medicaid waivers and ummm... it made me whimper.

I feel as if I'm giving up all my rights to exist as a person. Sign this. Sign that. Sign this.

I hid behind a pillow the whole time hoping the floor would swallow me up. Thankfully she was one of those people that ignored moi and talked to Mom.

YAY, I thought. Normally I would be offended since "talking about me in front of me" is a cardinal sin in my world. Not this time.

Lately I've been doing that. Zoning out.

I had to show her all my medications. As in show her. I am used to being on the other side. TANF? WHAT? ME? OMG. SSI? OMG. I will know about the waiver either Monday or Tuesday.

Thank you, Karen

One of my girlfriends from high school Karen Parker and her daughter Tiffany came down from Dallas to attend my daughter's memorial. I've known her since I was about 13 years old or so. Dates are fuzzy when you are suddenly 54.

She did an amazing thing for me. At the memorial she brought me all kinds of clothes, most which had tags still attached. What's even more amazing is they all fit. When I got home she emailed me and said for me to expect another box. Well...it arrived with another package of clothes. Tags attached too, all new. Wow. I felt like a kid at Christmas. Mom and I marveled over all the clothes. They are soooo cute!

This was much better than winning the Macy's Makeover Contest by far. What's one $500 outfit that I can't wear anywhere except to court? HA.

Many, many, many thanks to you Karen. I don't know what to say except thanks. We have the same taste. ;-)

I am so perturbed, my mother said...

"I paid all this money for that computer and I don't understand why I can't make it do what *I* want it to do!" she yells at me and if "I had my way I would send all the computer programmers to Siberia!"

Duly noted.

She also said she needed a gallon of chocolate to drink and dip her computer cookies in. She's mad because she cannot delete her own computer cookies and she thinks that is so wrong since it's "her" computer and she wants to delete them.

I can't find them so I think she's ahead of the game if she found the cookie folder to begin with but I digress...plus she's mad at Best Buy because they don't have any zero star ratings for their website (you have to give them at least a ONE star rating) and she wants to give them a zero.

The point of all this takes you to Tear Soup.

I went out with a friend today for sun, air n' stuff. Mom went to the book store (she locked me out of the place too, funny I can't call it home too readily) and she came back with four decidedly interesting books. Three grabbed my eye instantly- especially "Tear Soup" by Pat Schwiebert and Chuck DeKlyen. See http://www.griefwatch.com/tearsoup/cooking_tips.htm for the website.

Mom and I fit all the characters in the book, Tear Soup. It is a wonderful book. Just...wonderful.

If you don't understand us, well get the book. LOL. We'll make more sense. Might save you some therapy if you're trying to figure us out. HA!

The ghosts of the past, present and future

I am looking at a past with my daughter, the present without my daughter and a future without my daughter.

I do not like what I feel. Knowing life never takes death away, I will never see her the way I am accustomed to seeing her. What if that is all?

I had a question for her today. I can't ask her now. It wasn't an important question, but one I would have sent a quick text message to. Her number and email are still in my phone. As is my father's....I am reluctant to remove them. All in it's own time. Everyone keeps dying but I never thought my daughter was in line. She was ONLY 34. A baby.

I feel as if I am writing a bad novel. This is happening to someone else, yet I'd never wish this upon another.

Friday, It will be a month.

Oh yay

I may qualify for a Medicaid waiver.

Oh yay, said she.

Air

I can physically feel the heaviness in the air. Today is harder than yesterday or the day before. The reality is hitting me, she is not coming back. "Trading homes for another" does not satisfy me as an answer. I want her back.

I won't get her back tho. Life never takes death away.

This sums it up

http://www.athealth.com/consumer/disorders/parentalgrief.html

...and this line especially jumps out at me:

This space is with me all the time it seems. Sometimes the empty space is so real I can almost touch it. I can almost see it. It gets so big sometimes that I can't see anything else. - Arnold and Gemma 1983, 56

Gini

Gini is driving me crazy. It's as if a switch went off on her and suddenly she wants my undivided attention. Her constant demands to "play fetch" are driving me crazy. It is her attempt to keep my mind off things I suppose.

I know she is mourning with me. She can tell I am depressed. I do not want to deal with demands requiring any thinking on my part.

Every minute she brings me her toy. Every minute she wants me to throw it. NO. I have to figure out where NOT TO THROW IT.

Forget about it, girl.

Wal-Mart doesn't sell solace

Mom and I took a friend to Wal-Mart and of course I was whining all the way there and back. One thing I hate to do is shop. Women might find that decidedly odd but it's true. I hate, hate, hate shopping. I shop like a man. If I need shoes, I head straight for the shoe department and load up. Peep toes r' us! Then home I go. After all that is what I went to the store for, right?

No, they want to browse. I do not get the concept of looking for things you might need to buy. I'm acting like a Texas Cowgirl texting everyone "get to the front- and NOW!" because everyone in Colorado Springs was at the same Wal-Mart I was in and the walls were closing on me. I wanted out...NOW. Mom bought me a politically incorrect t-shirt- one of the "Snow White and the Seven Drawfs" t-shirts saying I am Grumpy. Some seek solace in shopping. I seek solace elsewhere. Shopping does not bring me solace. I do not know where solace is found, but it is not at Wal-Mart.

I miss my daughter so much I cannot stand it.

Mom reminded me of a song *I* used to listen to as a teenager. Yes...I never did share this one with my daughter. I forgot about it but my mother remembered and reminded me of our shared memories.

Yeah- "Hang on, Sloopy, Hang on"

To plow or not to plow, that is the question....and it's a year later

They have the most remarkable fireworks at the Air Force Academy every year. I want to go again this year. However to get to the disabled parking you have to drive through people (as in...mounds of people) that are ignoring the fact there is a road in place. Uh...no. Not me! *bleep* I know I will be one of those to mow down an entire platoon of cadets. I recall firmly planting my flag in the field last year and thinking "things will be better this year".

Boy was I ever wrong. Things got much, much worse.

I lost my daughter which is the worst thing that can ever happen. Losing a spouse that "went bad" is like losing a pair of smelly shoes. A pending foreclosure brought on by smelly shoes, nah...nothing to it. You can survive that. MS? Nope. No problem at all. Losing a child? It stops your life and it takes very special people to pull you back from the brink. I still don't know how I will get through that.

Do I have a spot or do I not? That was the question...

Today was one of those days when nothing was going right. First things first. I opened the cabinets and everything fell out. Did I say everything? I mean...EVERYTHING. It was quite noisy too. Dog food, cat food, laundry basket, trash bags, you name it...CRASH!

Then did I or did I not take my shot??? I knew I had taken one out of the fridge but I could not remember if I had injected it. So I started on a spot hunt. I spy for robin eggs. Oy vey.

I see spots but were they from today's injection or yesterdays? Given that I had already gone to an every other day schedule and was loathe to miss any more injections I did not want to skimp a day again. I simply could not remember. I decided that the evidence was overwhelming- I had not injected myself with a $125.00 injection so I got another one out of the fridge again but I really did not want to take two in a day if I had indeed taken one...overdosing on Copaxone doesn't sound any better than underdosing.

A side note: What on earth is wrong with Copaxone this month? They sting and burn a LOT... I don't know if they've changed the formula or if I've changed MY FORM but the welts and bruises are certainly proving interesting.

My belly looks like a Mars Bar.

I went ahead and poked- and it's been an hour and would you know it....the damn thing is still burning like Comet poured on an open wound. What is this about? (I think I'm overdoing it on the belly area....)

I did find I did not give myself an injection after all. I lost it under the chair this morning. Along with the rest of the marbles that make up the moi that is me.

Some "IF" answers by my daughter...

If you could sing any one song beautifully and perfectly, which one would you pick?

Amazing Grace

If you could spend one year looking for one thing in the world, what would you search for?

end of the rainbow

If you were given a yacht today, what would you name it?

Happy Hippy

If you could give a single piece of advice to the automobile industry, what would you tell them?

Your kids drive in these cars, depend on them- make them feel safe in what you make.

That sums up what I want to say about her today.

At Seventeen, I learned the truth...

Yup, a musical commentary by a deafie MS'er again...

Lyrics for the deaf:

by Janis Ian
"At Seventeen"

I leaned the truth at seventeen that love
was meant for beauty queens
And high school girls with clear-skinned smiles
who married young and then retired.
The valentines I never knew,
the Friday night charades of youth
Were spent on one more beautiful.
At seventeen I learned the truth.
And those of us with ravaged faces,
lacking in the social graces,
Desperately remained at home,
inventing lovers on the phone
Who called to say, "Come dance with me,"
and murmured vague obscenities.
It isn't all it seems at seventeen.
A brown-eyed girl in hand-me-downs
whose name I never could pronounce
Said, "Pity, please, the ones who serve;
they only get what they deserve.
The rich relation hometown queen
marries into what she needs.
A guarantee of company and haven for the elderly."
Remember those who win the game
lose the love they sought to gain.
In debentures of quality and dubious integrity.
Their small-town eyes will gape at you in dull surprise
when payment due
Exceeds accounts received at seventeen.
To those of us who know the pain of valentines that never came,
And those whose names were never called when
choosing sides for basketball.
It was long ago and far away;
the world was much younger than today
And dreams were all they gave away for free
to ugly duckling girls like me.
We all play the game and when we dare
to cheat ourselves at solitaire.
Inventing lovers on the phone,
repenting other lives unknown
That call and say, "Come dance with me,"
and murmur vague obscenities
At ugly duckling girls like me at seventeen.

I can't get my mind off music. My daughter and I shared a love for certain songs and I am quickly filling up my youtube account with music I remember she and I used to listen to with wild abandon. I am noticing a common theme to the songs we used to listen to. I do not like these songs anymore except for "old times sake". They still bring a smile to my face for that reason and that is where my pleasure comes from. I am more...into uplifting music, more upbeat, and at times, more COLDPLAY and stuff it up your yahoo kind of stuff .... like PINK , HA! but Simon & Garfunkel and other normal songs still sing to me so all is not lost in the planetary orbits that circle about my brain. (should I mention that to my Neuro?) Nah- it's time to call 911, a.k.a my BF with MS for an emergency lunch. I shall do that.

Hope the Thunderbird is fired up.
Hope she's ready for that cliff.
Hope she can drive stick shift.

Or we'll go in her hubby's Porche. At least a claim can be filed... :=P

Rev it up, baby

My daughter and I talked a LOT about kissing. We both were really *funny* about kissing. We knew what good kissing entailed. Neither of us (well she more than I) had kissed many but we knew what we liked. Too much information? Well, it's something we talked about. I don't know if you mothers with daughters ever talked about stuff like that but WE DID. And oh we did...and did..and did! And we loved this song as a result: Rev it up, baby!

The last time we visit in Texas (in May) when I think about it....we did not have our *girlie-girlie* chat like we normally do. Even if neither of us were dating we still giggle like schoolgirls over what "we like". This time we did not. I wonder...why.




This reminds me of another funny memory involving BOTH of my kids. They brought home a video (this was before DVD's, oh-kay?) and I casually said "Oh what are you guys watching tonight?" PANIC. Absolute PANIC. It was The People vs Larry Flynt, just out on vhs so I guess around '96 or so. Dunno. Anyway I said ohhh goodie! *ahem*

"Mom- we won't feel comfortable with YOU in the room."

You could hear a pin drop. I said for "Pete's sake kids, I've had sex more than twice so get over yourselves, we're watching this movie together and that's that." I plopped myslf down on the floor with pillows n' stuff and they very grudgingly sat on the sofa and watched the show. I recalled giving it a thumbs up.

I will miss those uncomfortable times with the kids too. I loved watching both of them thinking ewwww....their mom...dating. Ewwwww. Now only one gets to say it. If he does. Ya know? It was their thing.

Sleep: Real or Fake, it's appreciated...

Last night I slept again. That makes two nights in a row. I found in my stash of *drugs* an old bottle of sleeping pills.

Two nights in a row I slept. It was much appreciated. I see there are no refills. Not a problem, I say...I'm taking a friend to the same doctor and while I'm there I will get that SCRIPT refilled.

Real or fake, I must...sleep or I will fall apart. The choice seems obvious to me and I'm sure it will be to the doctor. Sleep is a precious commodity.