List of Stress

This is a list of stressful stuff just so I can get rid of the emotional issues behind them:
1. Wedding dress running late.
2. Bridesmaids dresses not being done on time.
3. Bridal Palace giving the wrong dresses to the maids.
4. MS drug test may be put off.
5. Not knowing if I want to go through with drug test due to side effects.
6. Money money money.
7. Feeling like I'm lost, and not knowing what to do.
8. Being sick.
9. Asking for/taking days off.
Everything is making me feel depressed. I can't avoide feeling dispair... I can't stop thinking about everything. My head is swimming. Even if I stop thinking about one thing, I think about another.
I don't know what to do or how to just stay calm and start feeling better... about everything.

Sickness, Study, & Signs

So I've been sick for about two weeks (a week and a half) and I'm about to take part in the MS Drug Study for Fingolimod. I've gone through all the steps and was supposed to be randomized (wether I'm taking a placebo or the real thing) this upcoming Monday. But they just called today and said that since I've been sick, my immune system is at risk, because one of the side effects of Fingolimod is an even weaker immune system. They want me to be completely healthy before I start. I can respect that.
The catch is that I have been praying to God wether or not to go through with it. I started praying when I saw that one of the side effects was potentially extreme birth defects. That really worried me, and so I started to pray. I asked for a sign on if I should start the study or not. Because having children in the future is a super big concern of mine. I know that if I did the study, we'd have to wait at least three years before we could start, by then I know we'll be ready, but at the same time... what if this new, unstudied drug does something adverse? It's already been recorded of two different birth defects durring the last study of it. Besides, I wouldn't mind starting a family soon. I know Chris is a little bothered by the idea that he's already 30. He doesn't say it, but I know that before we started dating he mentioned he thought he'd already have kids by now.
I'm worried/wondering if this is the sign? I've put so much into this study already, but when I talked to Him, I said "even if it's last minute." I guess I shouldn't have been specific. I can't wait too long, because the cut off date for the study is October 30. I have to be randomized by then if I'm going to be a part of it. If I'm not, this is a perfect time for me to drop out, because I haven't started taking anything, I've just been doing baseline tests, so I don't have to worry about follow up tests... or adverse reactions.
Because they're having to move my randomization date, I have to get another MRI. I got one on September 18th, but I have to have it done before the 30 day mark of the randomization date... and I miss it by 10 days. I can't do the randomization date earlier, beacuse the doc isn't in except that one day next week, and he's not in at all the following week. After that, I'm on my honeymoon.
I just don't know what to do, so I've added the poll at the top to get opinions.

I just got a call from them again. They're able to get me in to do randomization on the 15th, so I don't have to do another MRI. But it still makes me wonder and worry. I mean, those two/three hours that I thought I was going to have to do everything again... they really shook me up. Is this a wake up call? An "answer" to my prayers? If so, what does it mean, since I've gotten calls both ways? Suggestions, answers, and prayers are all greatly accepted.

Wedding Frustrations

Grrrr!! I am so frustrated that everything is being late! I made sure I was on time, if not early, on ordering things, but they are still not happening on time!
The invitations were late, and had a mistake on it! And no one RSVPs anymore! I sent out 150 invitations, and have gotten maybe a third of people RSVPing, either yeah or neigh.
My dress was late, even though I ordered it way ahead of time! Apparently the Maggi Sottero facorty burned down or something, because it was soo late getting in! I thought, "okay, the place I ordered from isn't at fault." But now the bridesmaids dresses have been late, and they didn't overnight the ones to the maids that are out of town! It's so frustrating with only two weeks to go, and some of my bridesmaids haven't even gotten their dresses! The ones out of town I don't berief, it's the ones close that haven't picked them up!
It's so frustrating when so many little things don't happen right. It makes we worry about the bigger picture: the wedding. I'm just praying the serinity prayer, breathing, and taking one step at a time:

Reactions

Okay, so I wasn't feeling well after all the tests on the 18th. It's the first time I've had a reaction to the flaire dye from the MRI. But then after I got home, I was feeling really bad in the stomache. I got nausias and diariahe.
I also noticed a bad reaction to the ECG stickers. They were really itchy towards the end there, and I noticed once I got them off that I was scaring. Even after I've showered, they're still a bit itchy, and it's hard to ignore. But they're getting better now. But there are a few that are raw and scared. Chris has washed them with alcohol, but... anyway, I've started putting Neosporine on them, hopefully it's not too late.
I noticed that my throat was itchy. It was hard to not caugh while I was laying down for the MRI. If I remember right, I caughed a bit with the asthma medication on the 16th. The caughing got worse, and my throat is really raw now.
I wasn't able to go in to work on Friday because it hurt so much. I was dizzy with vertigo, and had a headache. It wasn't good. I spent the day sleeping myself well while trying not to move too much.
I still have the coughing and the vertigo. But Chris got me some caugh supressant and it seems to be slowing them down. Hopefully I'll be ready for work tomorrow.
The thing is I'm not sure what the coughing/itching is from. I have a few theories. 1) A number of people at work, especially the ones I work closesly with, have been sick the last couple of weeks; so maybe I got it from them. 2) The asthma medication. 3) Just another bad reaction from the MRI Flair injection. 4) I have a weakened immune system due to all the running around poking & proding my body for all the tests.

More Doctors

Today was another long day. It started at 8:30am with meetings with my physciatrist and psycologist. That took a total of 1.5 hours.
Following that I had to redue my labs. Ugh! They hadn't pulled all the viles out, so the didn't have enough blood for the tests. Yup, they had to do it twice.
After that I had an MRI at 12:30 pm. I was told I could get a topical numbing gel put on my arm for where they were going to have to do the injection, as well as getting an anti-anxiety pill. They didn't give me either though, because I was told to arrive 30 minutes before, and when I got there they told me, it had to be an hour before. Grrr!!! So mad was I! They did put a towel over my eyes so I couldn't watch. Anyway, so I had to have the regular MRI, and then one with flair (the dye injection).
After that I had to have a chest x-ray. They also made me breathe normal, hold my breathe, and do deep breathes. It was all in the same place.
Then I was swept over to the neurology place to do an ECG Test. For this one they just did a blood pressure test and then hooked me up to a heart monotor for 24 hours. I was able to go home with a traveling monotor. I had a whole bunch of stickers all over my body. Ugh, but at least I could take it home with me.

Testing for the Test

Whew! Today was a busy busy day! I took the day off of work because I had five different tests today for the FTY720 trials.
At 7:30am I had a Pulmonary Function Test. This is where they test my lung capacity. I had to breathe into a tube a number of times. One of the tests was just me breathing regularly, then taking a deep breath in and blowing it all out. Another test was breathing in against something blocking the airway. The next was breathing out against something blocking the airway.
Each of the tests I had to do three times. Then I had to take an asthma medication and wait a little bit. Then I had to repeat and do all the tests again... three times. You'll see that that's a pretty regular thing: 3 times repeate of tests.
The next test was getting my labs done right afterwards (about 9:00am). They had to draw three viles worth of blood for all sorts of tests I'm not aware of. I also had to do a urine test for pregnancy assurance.
The test after that was MS Functional Composite Test, at 10:00am. This test was actually another series of tests. They had me walk as fast, and as safely, as I could down a straight path... x3. The next test we did was seeing how fast I could put pegs into a board, one by one. This one we did six times because we did it with each hand three times. The next test was reading letters off the wall. The bottommost line I could read. The letters were all the same sizes, they just faded as they went down the wall. I think I did pretty good at that. Again, x3. They had to take my blood pressure (which sucked because it was on the arm that the blood was taken from)... four times, because one of the times didn't take. Oh, and the hardest test we did was this numbers test. They played a CD that would give numbers and I'd have to add them up, then it'd give me another number, and I'd have to add it to the last number (not the answer to the last set). It's a lot tougher than it sounds because it's start spilling out numbers quickly. Again, x3.
At 1:15pm I had an EDSS Test. This is your basic MS test that the neurologist does. It was done by a different doctor from my normal neurologist. This was where he made me walk a straight line, one foot in front of the other. Then he checks my reflects. Then the doc did the poke test, to see if I could tell the difference between soft and sharp. He also did the "ping" test. That's what I call it, at least. It's where he takes a tuning fork, srikes it ("ping!"), and then places it against parts of my body to see if I can feel the vibrations. I was fine, except my left foot, it took quite a strong "ping" for me to feel it.
Then I had to do it all over again with Dr. Webb. Which wasn't bad, it just meant that I had to repeate it only twice. Not bad.
It was a long day of testing. But it was over by two pm, which was nice.

FTY720 Visit 1

Okay, so I'm getting ready to start the drug tests for an oral MS drug. On Sept. 9th I met with Nancy the Neurologist and went over the paperwork. It doesn't seem like that big of a deal, but it took a lot longer than I thought it would. It turns out Fingolimod (FTY720) has a few side effects that made me a bit worried.
The biggest thing about Fingolimod is that it moves the white blood cells, which causes the immune system to be weakened. It's bad enough that MS causes the innune system to be weakened, now I'll be taking something that causes it to be even worse. Grr. Oh well, I'll just have to up the vitamin dosages and such... and take extra shots, for flu and such.
The other thing that really really worries me is the birth defects as a possibility. That really scares me and makes me worry about the future. Is it worth it, I think? I keep thinking that maybe I should wait and go ahead with hmy life. But I still go on with heading towards the trials, thinking of I'm not supposed to do it, one of the tests will turn out negative, and I'll have to drop out. It's hard to not think about. There's only been two recorded cases of birth defects, and they might have not properly gone off the medication before getting pregnant. But it still worries me.

Lost Dog!!

Pixi is lost. This is the longest she has run away for. Normally we'd recieve a call by now, but... nothing. I'm so worried.
Please keep her in your prayers that she comes home safely and soon.

LATER ADDITION: She came home around 10pm the same night all on her own. She drives me crazy running away like that!! Grrrr. She's covered in burrs, so we have to go get her hair cut again. I quickly took her to the shower because she was also covered in mud. She knew she was in trouble.
I guess untill we figure things out, we're just going to have to walk them, rather than let them out on their own. :(
But at least she's safe and back at home. Still, keep her in your prayers... both the dogs, because we've got to sort out what to do about them digging and running.

Spasicity

It's been a while since I've written, but I had an episode of Spasticity. This is the second time in 10 days or so. July 4th was the last time. It's only happened one other time; I was still on Avonex and it was sometime last year (it's documented in my blogger under that Electrical feeling, because that's what I could describle it as, but the last time I had it Chris helped me figure out exactly what it was... Spasticity, because the muscle hypertonisity. We've treated it briefly with b-12, and waiting on what the doctor could recomend, but that's about all we can do for now. Below is what spasticity is:
Spasticity or muscular hypertonicity is a disorder of the body motor system, and especially the central nervous system (CNS), in which certain muscles are continuously contracted. This contraction causes stiffness or tightness of the muscles and may interfere with gait, movement, and speech. Depending on severity, the person with the spastic muscles may or may not feel it. However, it can often be severely disabling . The human motor system is not always linked with the sensory systems, nor the voluntary-muscle systems.
Symptoms may include hypertonia (increased muscle tone), clonus (a series of rapid muscle contractions), exaggerated deep tendon reflexes, muscle spasms, scissoring (involuntary crossing of the legs), and fixed joints (contractures). The degree of spasticity varies from mild muscle stiffness to severe, painful, and uncontrollable muscle spasms.
The condition can interfere with rehabilitation in patients with certain disorders, and often interferes with daily activities. Over the years, it may increase in its effect, so more severe treatments may be needed later. Cold weather and fatigue can trigger spasms more severely than other times. The constant spasms can lead to muscle fatigue so periodic rest is required but often difficult to achieve. Multi-tasking (such as walking, talking, eating and other activities) can also trigger more severe spasticity.
I guess I really do need a break; but from what? from what? London, here I come. I feel bad because Chris is the one with a job, I'm still trying to get one. The house is now in beautiful shape, but that's only because Patti came over and did so after my attack today.
I've never had an attack durring the daytime, I was in my car luckily. But it felt so public. I couldn't stop shaking, and crying. It hurt so bad.
Luckily Chris was working close. I could barely get words out, it came on so fast. I just need to rest.

Money

One of the biggest things I stress about the most is the M-word: Money. I worry about the wedding costing way too much... every time I look at something online, or think about the dress. I worry about the house being out of Chris and I's budget. I worry about the Yale house costing waaayyy tooo much in reconstruction. Will I ever find a job... let alone two? And what about Chris' not being all the time?
Anyway, there's all sorts of worries but that's a big one.
I don't want to have to rely on my folks or Chris' all the time for stuff, or have them feel like we're using them for every little thing.

Oklahoma Allergies

One bad thing about moving back to Oklahoma is the allergies. Both Chris and I are experiencing bad allergies of the nighttime. We both caugh really badly, and when we breath, it sounds like we're whistling. It is not good.
It got so bad I went to Walgreens last night and talked to the pharmasist. He sugested Musinex DM, or the off brand, so we got the Walgreens brand, and it's worked great. It does knock you out, so watch out. I'm still stuffed up in my sinus cavities, but not as badly... I can at least breath through one side. As long as I don't breath out my mouth I don't whistle, and it doesn't hurt like it did.
I'm still going to try and get us both in to see an allergy specialist. I think I saw one here in Owasso.

MS and Eastern Medicines

One of my MS friends asked me about my travels into China Town today, this is what I wrote:

I actually didn't have to get the acupuncture. The Dr. reccomended some herbal stuff I'm going to try for 5 days and go back and report on results. But while I was in China Town I got a foot massage with reflexology. My feet and legs have been numb to the core and I've had that all over electric tingly feeling any time my body is at rest. And of course, the dizziness has been so rediculous I've been walking drunk even with a cane! But the foot massage (with japanese reflexology - it's really deep tissue) really helped a lot that! I can tilt my head and roll over in bed without getting dizzy; I immediately lost that electric tingly feeling!; I have feeling in my feet and legs; and this was all today. I am completely amazed. They said I should get it once a week or so, I totally agree... so should you!

A Letter to "Normals"

Having MS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about MS and its effects, and of those that think they know; many are actually misinformed.

In the spirit of informing those who wish to understand......
These are the things that I would like you to understand about me before you judge me....


- Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school, and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.


-Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy, that's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, your sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome to.

Please understand that being able to stand for ten minutes doesn't necessarily mean that I can stand up for twenty minutes ,or an hour, and just because I manage to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one it gets more confusing.
-Please repeat the above paragraph substituting "sitting", "walking", "thinking", "being sociable" and so on.... it applies to everything. That's what MS does to you.


-Please understand that MS is variable. It's quite possible (for me, its common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying "But you did it before!" if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, it this happens please do not take it personally.


-Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me I need a treadmill , or that I just need to loose (or gain) weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct....if I was capable of doing these things , don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do.


Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously MS deals directly with muscles, and because our muscles don't repair themselves the way your muscles do this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, MS may cause secondary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.


-Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now...it cant be put off of forgotten just because I'm out for the day (or whatever). MS does not forgive.
-If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with MS then we'd know about it. This is not a drug company conspiracy, there is worldwide networking (both on and off the Internet) between people with MS, if something worked we would know.


-If after reading that, you still want to suggest a cure, then do it, but don’t expect me to rush out and try it. I'll take what you said and discuss it with my doctor.
In many ways I depend on you....people who are not sick....I need you to visit me when I am too sick to go out....Sometimes I need you to help me with the shopping, cooking or cleaning.
I may need you to take me to the doctor, or the physical therapist. I need you on different levels...you're my link to the outside world...if you don't come to visit me then I might not get to you.
...and, as much as it's possible, I need you to understand me.

Re: Death Seems Better

A letter was written about the hardships of life being coiled upon a young woman, the fire of the devil burning her while the MonSter raged at her back the enter time. She sot solace in the MSuport group, and this was a beautifully written response I had to share:





I'm so very sorry to hear that all of this crap is coming down on you at once. I know it is a very difficult time, but I want you to know something:






MS Patients are without a doubt the STRONGEST people you will ever come across. They have to deal with so much, the light and extremes of things, more than others are exposed to. MS has no pre-determined course to the disease, like cancer, aids, etc... MS will not kill you. It does not end your life. What it does do is offer us
the "unexpected" on a daily basis, it's like the suspenseful part of a movie that we don't want to watch, but have to.

What we have to do, is to not lose everything about ourselves, but to modify/change who we are. We don't have to stop doing the things we love to do, but we do have to learn how to do them in a new/different way that is compatible with the limitations set forth by our condition. It doesn't "end" things all together, we just have to
learn how to modify our daily lives to accommodate MS.

MS wants to get us down and keep us down. But even if, for example, we are used to running 5 miles a day, and have to reduce it down to 1 mile a day, We still win, because we are still not down. We are not letting MS win by modifying what we do. Just changing "how" you do things will allow you to keep doing things that you love to do. MS might make some things more difficult, but that's just making you smarter and stronger.

I understand these thoughts you are having. I had them too during my first year after being diagnosed, but then I learned that our lives don't end because of MS, just making changes to accommodate will allow us to still persevere and beat the attempts by this disease to "keep" us down.

YOU CAN DO THIS, YOU CAN MAKE IT THROUGH THIS. WE ARE HERE FOR YOU, HERE TO HELP YOU THROUGH THIS. WE ARE HERE TO LISTEN TO YOU, SHARE WITH YOU, BE YOUR FRIEND AND YOUR NEW EXTENDED FAMILY. IF YOU EVER FEEL ALONE IN THE WORLD BECAUSE OF MS, OR FEEL THAT THINGS ARE JUST TOO MUCH, PLEASE REMEMBER US, AND THAT WE ARE ALL HERE, WAITING TO
SHARE, SUPPORT, LISTEN AND HELP EACH OTHER THROUGH THIS.

Now please do me a favor and read the following web page, and remember that when the day is over, We are still here for you.

http://www.metanoia .org/suicide/

http://www.metanoia .org/suicide/ spagebw.htm

You can make it through this. We need you.

Take care and God Bless.

Disney Disses the Mothers... Duh

What does Disney have against mothers?
By Aisha Sultan
ST. LOUIS POST-DISPATCH
03/15/2008


My Disney discomfort hatched with an innocent question from my daughter, then 3 years old: "Where is Belle's mommy?"

The princess who loves to read seemed to be raised by a single, dotty father. No explanations for her missing mom. And she's far from the only motherless Disney character. Parental abandonment runs like a river through the original fairy tales from which Disney characters were drawn, and the theme continues to the most recent blockbusters. Snow White's mother dies in childbirth or soon thereafter. Ariel the Mermaid's mother never makes an appearance, and Jasmine's departed one gets fleeting mention. Pocahontas is on her own. And we all know about Cinderella's stepmom issues.

Given the Disney princesses' rock star status among little girls, I started to wonder: What does Disney have against mothers? Many of us can recall the iconic heartbreaking scenes when Bambi's mother is killed or Dumbo's mom is torn away from her baby elephant. Nemo's mom is cruelly eaten by a barracuda.

The theories behind Disney's "matricidal obsession" range from Disney creators devaluing motherhood to crass commercial and emotional exploitation of a sappy formula — that works.

"Historically, there's a good reason why in traditional fairy tales there aren't any mothers," says Jack Zipes, author of "Why Fairy Tales Stick: The Evolution and Relevance of a Genre." At the times when many ancient fairy tales originated, mothers frequently died young or in childbirth.

But that doesn't explain the continuing popularity of Disney's dead/absent mommies and the plethora of modern single dads in the movies. The lack of a nurturing mother figure is even more pronounced when considering the prevalence of scary older women — the Sea Witch in "The Little Mermaid," Cruella De Vil in "101 Dalmatians," the stepmother and witch in "Snow White," the jealous witch who curses Sleeping Beauty and the stepmother in "Cinderella."

The fairy tales that endure resonate with us because they tap into our deepest fears, capture a struggle to which children can relate and deliver a happily ever after. We connect with dysfunctional families. We fear losing our parents or orphaning our children.

Zipes says the role of mothers has stirred reactions since the beginning of storytelling: "There is a very deep, evolutionary psychological problem in a lot of these tales, and that's why we keep coming back to them. Because they raise issues we still haven't resolved."

I find the absent mommies more disturbing than the dead mommies. It bothers me when they are invisible, like Belle's mom — gone for no reason and unneeded. At least the deaths are seen and felt as tragic events, signifying a life-changing moment for the characters, which they eventually overcome. But when the moms just don't show up, it feels cold. It plants a haunting seed of doubt in a 3-year-old's mind that we can abandon our children even when there are no barracudas chasing us.

I don't remember how I explained Belle's lack of a mommy. Little girls fancy themselves as these princesses, and I wanted to create a backstory with a loving mommy character.

But I just didn't know how to spin that Disney magic.

update, not to worry! for myself

Legs from knees down, and right side from ribs down, are needle-point numb. This means that they are no longer tingley numb, which is a good thing, because that gets annoying. But I do have to watch out because I can break a toe without knowing it because I won't feel it. Because it's all in my legs it really throws off my balance; it's like the world is one of those giant bouncey castles... and I'm trying to get through it. So, of course I look very drunk doing my daily tasks. My right leg is just very warm all the time, like an internal heating pad. Anything cold just feels wet, it's very odd. Sometimes I feel pain if the muscle is flexed.

What Living with MS feels like

If you're like me, sometimes it's hard to explain to people what different MS symptoms feel like. Below is a great list that I had e-mailed to me that makes it a bit easier to explain it to people.

When We Say We Can't do Something Because We don't feel Well, put yourself in Our Shoes By Using The Examples of our Symptoms Below...

- Painful Heavy Legs: Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down - how ya' feeling now?

- Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.

- Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.

- Loss of Feeling in Feet and/or Legs: Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won't fall down.

- TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.

- Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.

- Tingling: Stick your finger in an electrical socket - preferably wet.

- Tight Banded Feeling: Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya' breathing?

- Shots: Fill one of our spare needles with saline solution, saline won't hurt you, we would love something worse but don't want to end up in jail. Give yourself a shot everytime we do our shot.

- Side Effects From the Shot: Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat> yourself to some spoiled food or drink.

- Trouble Lifting Arms: Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.

- Spasticity: Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.

- Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each
one...Bzzzzzzzzzzzz zzzzzz

- Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.

- Urgently Needing to Pee: We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.

- Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and
allow them to periodically crawl around throughout the day, heck all day would be good too.

- Pins and Needles: Stab yourself repeatedly with needles all over your body or better yet....Get a very large tattoo in your most sensative area.

- Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take
several walks around the deck with your eyes closed.

- Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep - it's not the same at all.

- Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.

- Bowel Problems: Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there till tears appeared.

- Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead...optional of course.

- Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms.....hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.

- Buzzing Feeling When Bending Our Heads to Our Chest (L'Hermitte' s): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.

- Vision Problems (Optic Neuritis): Smear vaseline on glasses and then wear them to read the newspaper.

- Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn't get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.

- Foot Drop: Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you'll get it.

- Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.

- Fear: Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don't move. Think about this every night wondering whether something on your body won't work the next day when you wake up.

- Swallowing: Try swallowing the hottest chili pepper you can find.

- Heat Intolerance or Feeling Hot When it's Really Not: You are on a nice vacation to Alaska. It's 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person
without MS would feel bad, now add all of the above symptoms - welcome to our world.

Then Finally...

After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it's all in your head and that some exercise and counseling is the answer.

What I am

I'm a reasonably good person. I don't take illegal drugs. I take what drugs are perscribed to me, and that is all. I don't drink excessive amounts of caffeene. I have about one cafeeninated drink a month, if that. I drink water only, basically. I am by no means a drug addict... but my doctor seems to think so. That's because of the way I went in to see her because I was very tweaky and shaky and had the chills because I can't figure out what the heck is wrong with me. I get these electrical episodes at night that just about kill me and it scares me. My neurologist won't see me for a few more days, so I'm lucky enough to get in to see my internal doctor. She just see's that I'm a crazy drug addict who just happens to admit to being bipolar. "Yes, but if I were being manic right now, I'd be a hell of a lot calmer than this." I say as a flame flairs up in my eyes from its hidden depths.
She gets me in to see my psychologist... great. He doesn't do anything different, just refills the drugs I'm currently on as if nothing's wrong.
Grrrrr....

Well, tomorrow we will see what the "all powerful" Dr. E says about it. Oh, I have a guess: Walk a straight line... now touch your nose... now touch my finger. Good. You're fine. Asshole. Grrr... But anyway, all my doctors now think I'm a psychotic drug attic. Great. They even tried to hide it from me when they were doing the drug testing. They were like "Oh, we're just testing you're B-12 and thyroid levels." Yeah, that's why drug test was circled three times on the sheet as well? I'm waiting for that lab report to come back and kick them in the ass. TOLD YOU SO. Bi-Ai-tch! Sorry, I'm getting readdy for my fighting words tomorrow with Dr. E. He's really the one that pisses me off. And is he gonaa get it... if I can rememeber it all. the damn SOB, lucky he works with people who lose their short term memories. Cursese!! Alright, I'd better get to sleep before the tingling acts up too much. have a good one.

Evita

I wanted to add this insert because these songs from Evita have been playing in my head, the melodies at least, whenever I get down and lonely (which I am not right now, no worries). I just love how moving the music and lyrics are. Tim Rice really speaks to me through her words in the last bit of the first song and the rest of the others. They are just so...**sigh** well, you get what I'm saying. It's beautiful stuff, and I had to share it. Just lovely. As much as it makes me sad when I'm down, it makes me think when I'm in a good place. And think in a good way. It moves me. The love that they show and share, after everything, ends up being so beautiful and pure. He means his love for her, and he really means to stick by her, no matter what. And she tries to be strong... it's just so moving. **sigh** I leave it at that.




12. WALTZ FOR EVA AND CHE

CHE
Tell me before I waltz out of your life
Before turning my back on the past
Forgive my impertinent behavior
But how long do you think this pantomime can last?
Tell me before I ride off in the sunset
There's one thing I never got clear
How can you claim you're our savior
When those who oppose you
Are stepped on, or cut up, or simply disappear?

EVA
Tell me before you get onto your bus
Before joining the forgotten brigade
How can one person like me, say,
Alter the time-honored way the game is played?
Tell me before you get onto your high horse
Just what you expect me to do
I don't care what the bourgeoisie say
I'm not in business for them but to give all my
descamisados
A magical moment or two

CHE and EVA
There is evil, ever around, fundamental
System of government quite incidental

EVA
So what are my chances
Of honest advances?
I'd say low
Better to win
By admitting my sin
Than to lose with a halo

CHE
Tell me before I seek worthier pastures
And thereby restore self-esteem
How can you be so short-sighted
To look never further than this week or next week
To have no impossible dream?

EVA
Allow me to help you slink off to the sidelines
I'll mark your ado with three cheers
But first tell me who'd be delighted

If I said I'd take on the
The world's greatest problems
>From war to pollution?
No hope of solution
Even if I lived for one hundred years

CHE and EVA
There is evil, ever around, fundamental
System of government quite incidental

EVA
So go, if you're able
To somewhere unstable
And stay there
Whip up your hate
In some tottering state
But not here, dear
Is that clear, dear?

Oh what I'd give for a hundred years!
But the physical interferes
Every day more--O my Creator!
What is the good of the strongest heart
In a body that's falling apart?
A serious flaw--I hope You know that

13. Your Little Body's Slowly Breaking Down

PERON
Your little body's slowly breaking down
You're losing speed, you're losing strength--not style--
that goes on
Flourishing forever, but your eyes, your smile
Do not have the sparkle of your fantastic past
If you climb one more mountain it could be your last

EVA
I'm not that ill--bad moments come but they go
Some days are fine, some a little bit harder
But that doesn't mean
We should give up our dream
Have you ever seen
Me defeated?
Don't you forget what I've been through and yet
I'm still standing.

PERON
Eva, you are dying.

EVA
So what happens now?
Where am I going to?

PERON
Don't ask anymore.

14. You Must Love Me

EVA
Where do we go from here?
This isn't where we intended to be.
We had it all
You believed in me
I believed in you

Certainties disappear
What do we do for our dream to survive
How do we keep all our passions alive
As we used to do?

Deep in my heart I'm concealing
Things that I'm longing to say
Scared to confess what I'm feeling
Frightened you'll slip away
You must love me
You must love me

Why are you at my side?
How can I be any use to now?
Give me a chance and I'll let you see how
Nothing has changed.

Deep in my heart I'm concealing
Things that I'm longing to say
Scared to confess what I'm feeling
Frightened you'll slip away
You must love me (repeat three times)


15. EVA'S FINAL BROADCAST

EVA
The actress hasn't learned the lines you'd like to hear.
She's sad for her country.
Sad to be defeated by her own weak body.

(a microphone is switched on--she is now on the air)

CROWD
Evita! Evita! Evita!

EVA
I want to tell the people of Argentina
I've decided I should decline
All the honors and titles you've pressed me to take
For I'm contented--let me simply go on
As the woman who brings her people to the heart of
Peron!

Don't cry for me Argentina
The truth is I shall not leave you
Though it may get harder
For you to see me
I'm Argentina
And always will be

Have I said too much? There's nothing more I can think
of to say to you
But all you have to do is look at me to know that every
word is true

16. LATIN CHANT


CHE
She had her moments--she had some style
The best show in town was the crowd
Outside the Casa Rosada crying, "Eva Peron"
But that's all gone now--

17. LAMENT

(In her last hours, images, people and events from EVA's
life flow through her mind, while the grief of the nation
knows no bounds)

EVA
The choice was mine and mine completely
I could have any prize that I desired
I could burn with the splendor of the brightest fire
Or else--or else I could choose time
Remember I was very young then
And a year was forever and a day
So what use could fifty, sixty, seventy be?
I saw the lights and I was on my way

And how I lived! How they shone!
But how soon the lights were gone!

(The moment EVA dies, EMBALMERS move in to
preserve her fragile body)

CHE
The choice was your's and no one else's
You can cry for a body in despair
Hang your head because she is no longer there
To shine, or dazzle, or betray.
How she lived, how she shined
But how soon the lights were gone


EMBALMERS
Eyes, hair, face, image
All must be preserved
Still life displayed forever
No less than she deserved

Sometimes Late at Night

Sometimes, late at night, my legs suddenly feel like they're on fire. Almost immediately I start to twitch. The pain is so bad, My legs are under the crushing pressure of each other. The burning is so immense that it's actually cold instead of hot, and I start shivering. My torso feels like it's got a lasso around it, tightening and tightening, constricting my lungs and causing a pain in the middle of my back (like lying on a baseball with rusty nails). But it only happens when I'm trying to sleep late at night, not during the day, so we're still trying to figure things out.

FDA Warning Topamax

FDA Alerts Health Care Providers to Risk of Suicidal Thoughts and Behavior with Antiepileptic Medications
..


..FDA ALERT
..
The FDA has analyzed reports of suicidality (suicidal behavior or ideation) from placebo-controlled clinical studies of eleven drugs used to treat epilepsy as well as psychiatric disorders, and other conditions. These drugs are commonly referred to as antiepileptic drugs (see the list below). In the FDA's analysis, patients receiving antiepileptic drugs had approximately twice the risk of suicidal behavior or ideation (0.43%) compared to patients receiving placebo (0.22%). The increased risk of suicidal behavior and suicidal ideation was observed as early as one week after starting the antiepileptic drug and continued through 24 weeks. The results were generally consistent among the eleven drugs. Patients who were treated for epilepsy, psychiatric disorders, and other conditions were all at increased risk for suicidality when compared to placebo, and there did not appear to be a specific demographic subgroup of patients to which the increased risk could be attributed. The relative risk for suicidality was higher in the patients with epilepsy compared to patients who were given one of the drugs in the class for psychiatric or other conditions.

All patients who are currently taking or starting on any antiepileptic drug should be closely monitored for notable changes in behavior that could indicate the emergence or worsening of suicidal thoughts or behavior or depression.

This information reflects FDA's current analysis of available data concerning these drugs. Posting this information does not mean that FDA has concluded there is a causal relationship between the drug products and the emerging safety issue. Nor does it mean that FDA is advising health care professionals to discontinue prescribing these products. FDA intends to update this document when additional information or analyses become available.

Adverse reactions or quality problems experienced with the use of this product may be reported to the FDA's MedWatch Adverse Event Reporting program; see addresses below.

Considerations for Physicians and Other Health Care Professionals

Data from 199 placebo-controlled clinical studies covering eleven different antiepileptic drugs were reviewed and analyzed for reports of suicidal behavior (completed suicides, suicide attempts and preparatory acts) and suicidal ideation. The studies examined the effectiveness of the drugs in epilepsy, psychiatric disorders (e.g., bipolar disorder, depression and anxiety) and other conditions (e.g., migraine and neuropathic pain syndromes). The analysis included a total of 43,892 patients ages five and older (27,863 in drug treatment groups and 16,029 in placebo groups).

There was a statistically significant increased risk of suicidal behavior and suicidal ideation in the patients randomized to receive an antiepileptic drug compared to patients who received a placebo. The estimated overall risk was about twice that of the placebo group. There were an estimated 2.1 per 1000 (95% CI: 0.7, 4.2) more patients in the drug treatment groups who experienced suicidal behavior or ideation than in the placebo groups.

Four of the patients who were taking one of the antiepileptic drugs committed suicide, whereas none of the patients in the placebo group did. The increased risk of suicidal behavior and suicidal ideation was observed at one week after starting the drug and continued to at least 24 weeks. Because most trials included in the analysis did not extend beyond 24 weeks, the risk of suicidal thoughts or behavior beyond 24 weeks could not be reliably assessed.

FDA will be working with manufacturers of marketed antiepileptic drugs to include this new information in the labeling for these products. FDA is also planning to discuss these data at an upcoming advisory committee meeting.

All patients treated with antiepileptic drugs should be monitored for suicidality and other unusual changes in behavior. Symptoms such as anxiety, agitation, hostility, mania and hypomania may be precursors to emerging suicidality.

Healthcare professionals who prescribe antiepileptic drugs should:

Balance the risk for suicidality with the clinical need for the drug

Be aware of the possibility of the emergence or worsening of depression, suicidality, or any unusual changes in behavior;

Inform patients, their families, and caregivers of the potential for an increase in the risk of suicidality so they are aware and able to notify their healthcare provider of any unusual behavioral changes.

Information for patients, family members, and caregivers:

..Taking antiepileptic medicines may increase the risk of having suicidal thoughts or actions;
..
..Do not make any changes to the medication regimen without first talking with the responsible healthcare professional;
..
Pay close attention to any day-to-day changes in mood, behavior and actions. These changes can happen very quickly so it is important to be mindful of any sudden differences.

Be aware of common warning signs that might be a signal for risk of suicide.

Some of these are:

Talking or thinking about wanting to hurt yourself or end your life

Withdrawing from friends and family

Becoming depressed or having your depression get worse

Becoming preoccupied with death and dying

Giving away prized possessions

If these or any new and worrisome behaviors occur, contact the responsible healthcare professional immediately.

Background and Data Summary

After preliminary analyses of data from several drugs in this class suggested an increased risk of suicidality, in March 2005, FDA requested data from manufacturers of marketed antiepileptic drugs for which there were adequately designed controlled clinical trials in order to review the possible association between these drugs and suicidality events. In an effort to obtain the most complete and accurate data for this review, requests for additional information and clarification were sent to the manufacturers in 2006 and 2007. The analyses performed were similar to those performed by FDA for antidepressant drugs in the last several years.

One-hundred ninety nine placebo-controlled clinical studies covering eleven different drugs were included in the primary analysis. The conditions studied in these clinical trials included epilepsy, selected psychiatric illnesses, and other indications, including migraine and neuropathic pain syndromes. The analysis included 27,863 patients in drug treatment groups and 16,029 patients in placebo groups. Patients included in the analysis were five years of age or older. The individual sponsors of the drugs were responsible for identifying suicidal behavior and suicidal ideation events in their databases based on the instructions provided by FDA.

There were 4 completed suicides among patients in drug treatment groups and none among the patients in placebo groups. Overall, 0.43% of the patients in drug treatment groups experienced suicidal behavior or ideation versus 0.22% of the patients in placebo groups, corresponding to an estimated 2.1 per 1000 (95% CI: 0.7, 4.2) more patients in the drug treatment groups who experienced suicidal behavior or ideation than in the placebo treatment groups (See Table). In this analysis, the relative risk for suicidal thoughts or behavior was higher for patients with epilepsy compared to those patients with psychiatric or other disorders (See Table). The higher risk for suicidal behavior or suicidal ideation was observed at one week after starting a drug and continued to at least 24 weeks. The results were generally consistent among the drugs and were seen in all demographic subgroups. Specifically, there was no clear pattern of risk across age groups.

.... Relative Risk and Risk Difference for
.. Suicidality According to Trial Indication:
..
Indication Placebo Patients with Events Per 1000 Patients Drug Patients with Events Per 1000 Patients Relative Risk:
Incidence of Events in Drug Patients/Incidence in Placebo Patients Risk

Difference:

Additional Drug Patients with Events Per 1000 Patients

Epilepsy 1.0 3.5 3.6 2.5
Psychiatric 5.2 8.3 1.6 3.1
Other 0.8 2.0 2.3 1.1
Total 2.2 4.3 2.0 2.1

The following is a list of antiepileptic drugs* included in the analyses:

Carbamazepine (marketed as Carbatrol, Equetro, Tegretol, Tegretol XR)

Felbamate (marketed as Felbatol)

Gabapentin (marketed as Neurontin)

Lamotrigine (marketed as Lamictal)

Levetiracetam (marketed as Keppra)
Patient Information Sheet

Oxcarbazepine (marketed as Trileptal)

Pregabalin (marketed as Lyrica)

Tiagabine (marketed as Gabitril)

Topiramate (marketed as Topamax)

Valproate (marketed as Depakote, Depakote ER, Depakene, Depacon)

Zonisamide (marketed as Zonegran)

* Some of these drugs are also available in generic form.

Although the drugs listed above were the ones included in the analysis, FDA expects that the increased risk of suicidality is shared by all AEDs and anticipates that the class labeling changes will be applied broadly.



Adverse reactions or quality problems experienced with the use of this Product may be reported to the FDA's MedWatch Adverse Event Reporting program either online, by regular mail or by fax.

Online: www.fda.gov/medwatch/report.htm
Regular Mail: use postage-paid FDA form 3500 available at: www.fda.gov/MedWatch/getforms.htm.
Mail to MedWatch 5600 Fishers Lane, Rockville, MD 20852-9787
Fax: 1-800-FDA-0178

Tingley Hibi-Jibies

Okay, let me try to describe to you what the last few weeks have been like for me. Have you ever had an ant crawling on you (not bite you, just crawl on you... or maybe even a spider)? Okay, imagine that all over your body... not just one ant, though... millions... billions... gad-zillions! And not just over your body, but inside your body. I know not just ew, but creepy. But that's how my body feels right now, and has felt, progressively, for the past few weeks. At first it was just at night keeping me awake until something would kick in, and now it's anytime my body is still (sitting, standing, laying down, etc). Also, at first it was just in the legs, so I thought it was a case of RLS. But this week it has progressed rapidly up my trunk. I've quickly sleep medicated myself out, so now the pills don't work on me anymore. :( . I kind of equate what I feel to visually what the TV does when it has the black and white static. Anyway, just an update on the MonSter inside.

You Know You Have MS When

These quips actually originated from a posting in the MS community at Daily Strength.

You Know You Have MS When:

Your four-year-old is better than you in memory games.
You face-plant into the floor and only afterwards you think, "I'm falling!"
You tell your daughter to go to bed (in the garage) at 9 PM.
You're on the phone with a dear friend and can't remember who the heck she is.
You pay the phone bill twice because you can't remember that you paid it in the first time.
You forget to pay the electric bill and your power gets turned off.
You realize you sent the electric bill payment to the phone company.
You call someone and by the time they answer the phone, you forgotwho you called.
You try to grease a skillit with 409 instead of Pam.
The bottoms of your feet are numb and you realize you've been walking around without shoes on because you can't tell the difference.
Your dog cleans up after you.
You attempt to bake cookies, but you use wax paper instead of parchment paper. Even worse, you can't determine what's wrong until your cookies start to look like candles in the oven. Worst of all you have to call your mom to ask if you are able to cook in the oven with wax paper. She thinks you've lost your mind because you've been baking cookies on parchment for years!
You dice your fingers while washing knives in the sink. The water turns red and you haven't a clue why.
It's easier to use Charades because you just can't remember the words.
You hold a nail with one hand and a hammer with another, but by the time you're ready to finally swing the hammer you've dropped the darn nail... again.
You call your daughter to ask for directions and realize you've already arrived at the location in question.
You attempt to move your index finger and your pinky finger moves instead.
You wash your hair with conditioner and THEN was it with shampoo.
You try to get your key into the door to your apartment. You jam and slam and swear! Your neighbor opens the door from the inside to help you and you realize you're breaking into the wrong place.
You go to the store, turn around and realize you're lost. You have to call your 16-year-old to come and find you (or you call your husband's cell phone just to hear it ringing like a homing device).
You have a college education, but when your doctor asks you to spell a simple, four-lettered word, you're speechless. Of course, you can easily shout out a four-letter word in reply (not necessarily the same one the doctor wanted to hear).
You invite your guests to sit on the cake while you serve the couch.
Your mom seeks out advice about Social Security from YOU.
Buttons are useless, zippers are worse, so your whole wardrobe turns into elastic waists or Velcro.
You have become jealous of how few times pregnant women go to the bathroom.
You use body soap instead of body lotion and can't figure out why it won't rub in.
You map out everywhere you go based on how many public restrooms are along the way.
You have to ask the dog where his leash is.
You fail a test for intoxication and you haven't had a drink (YOU try to walk a straight line with MS!)
Your nine-year-old tucks you in bed and kisses you on the nose.
Your 80-year-old mom jumps up from her seat and offers it to you.
You point your keyless car entry button at the front door of your home and wonder why the door isn't beeping.
Your Neuro asks you to look to the right and instead you look to the left. Or worse, you move your whole head instead of just your eyes.
You start to take your meds and can't remember if you already took them. So you hunt to find the pamphlet that comes with the prescription so you know what to expect if you accidentally overdose.
You do exactly what the instructions on teh shampoo bottle read: Wash, rinse, repeat. But, you only do it because you can't remember what parts you have already done.
You go to work with one shaved leg because you forgot to shave the other. The next morning you decide to shave the other leg to play catch-up, only to find out that you re-shaved the same one again.
You sleep in your work clothes because you're just too darn tired to change into PJ's and then back into work clothes the next morning.
Your 70-year-old father offers to let you borrow the cane he used after knee surgery, because it looks like you need it more than him.
One of your students (worried about your eyesight) tapes paper over the overhead lights and you think you've forgotten how to operate them.
You refer to swallowing a pill as swallowing a pillow.
Your child's teacher corrects YOUR spelling in a note to her.
You get excited when the weatherman says to expect "unseasonably cool" weather.
You show up to your job from four years ago, walk in the front door, and only then realize that you've shown up at the wrong employer.
And ond of the best ways to know you have MS is when your teenager thanks YOU for doing some of the cooking and cleaning!