Friday, April 30, 2010

weak, strong, sight, blind, happy, sad,..

I am feeling pretty good today. I am well rested and hooked up to the IVIG line. I am growing a bit tired of the see saw that is my life. Yesterday for example I couldn't wake up, I mean CoUlD NoT WaKE Up! Once out of bed if I moved my foot my toes scraped the floor, I fell into the recliner and opened my laptop but was too weak to type in my password. After an hour of this I grew emotional. My voice started to slur, my patience waivered. Then I took a long bath in Lavender Epsom Salts....this helped my mood and my voice improved. I decided at that point to take the opportunity to video tape and share my eye symptoms with the world. The response has been tremendous. So many people were out there wondering if they were alone in their symptoms until they THis made all the embarrassment and trepadation worth it. Here is the video...

Monday, April 26, 2010

Stepping into new and frightening waters...

well I crossed a line I said I wouldn't cross. After much urging from some fellow myasthenics I have created my very first Vlog on You Tube. The purpose is to put a face to MG for those newly diagnosed and looking to see what the disease is all about so I am not prettied up and I am experiencing some eye, voice, and mouth weakness. Feel free to check it out but please be kind...

Frustrated with the ups and downs of this Roller Coaster

So, I had a busy weekend. Saturday my mother in law picked the kids and I up to see a play. One would thing sitting for two hours would not exhaust me but i was stumbling around and relying on my walker for the rest of the evening. Sunday was much better, I even managed to do some cleaning. It has been a while since I have been able to accomplish that. And I felt fine afterward. Typically I have to chop chores up into little tasks so I don't fatigue out but I was able to unload and load the dishes in one session and unload and load the laundry in one session. I felt okay for the rest of the evening but the beast struck again this morning. I remember hitting the snooze button but my husband said the next time the alarm went off he lifted my arm and it fell like a noodle, I couldn't even open my mouth to annunciate...just mumbles that were incoherent. He let me sleep another 1/2 hour and brought me my AM dose of Mestinon with coffee. That helped get things moving but I had to sit on each step to get upstairs and I am relying on the walker to get around as I fell again. My whole body aches, like the flu without the fever, and my typing which is usually travel agent fast is a series of slow methodical clicks. Each of my fingers feels like a 10 pound weight. I wish there wasn't such a lapse in time between doing too much and it's effects. I am tired and a bit grouchy today but I know this too shall pass.

Saturday, April 24, 2010

Appetite and chronic disease

After making an "appetite bigger than stomach" mistake yesterday, and continuing to pay for it royally today, I thought I would blog about my personal challenges with food/weight loss/weight gain/etc...

When I first became ill with Myasthenia my muscles atrophied fast, my diaphragm was very weak, and my oxygen exchange was so poor that I relied on an oxygen tank to walk anywhere/sleep/shop/drive pretty much anything but sit in a chair. During that time I struggled constantly to eat. Eating made me feel sick, nauseaus. My organs weren't functioning properly due to lack of oxygen so it was very difficult to digest anything I ate. During that time I lost 25 pounds in as many days. I became so frail that one of the doctors put that she suspected anorexia in her notes. This saddened me as I fought daily to eat...anything.

After my diagnosis my appetite came back but by that time my stomach had become pretty small. Once I started the Mestinon I was getting stronger and food didn't disgust me anymore. I remember the first week I started the med going to my favorite lunch joint and cleaning my plate...I paid for that dearly when I learned what happens when you hit your max dose of Mestinon. For those of you who don't know, it hangs out at the neuromuscular junction giving the nerve signal a better chance to make it to the muscle receptor. When you hit your magic dose, it tends to stimulate the colon...suffice it to say I didn't gain any weight from that lunch;) But that's enough about that fun topic.

Moving forward to the medication that everyone who is anyone in the autoimmune disorders community eventually gets prescribed; PREDNISONE...oh the dreaded, beautiful prednisone. Get too little, it doesn't help at all... get too much and you end up with moon face, hump back, hair where you don't want it, and much much more...get just the right amount and hopefully you won't suffer major mood swings, diabetes, or osteoperosis. Fun right? One thing is for sure, no matter what your dose you will get hunger attacks where you can't control your appetite. this happened to me yesterday after a visit to Taco Bell...therein lies my first mistake!

So, lessons learned, just because the pit of your stomach is telling you it is a good idea to drink a bucket of Dr. Pepper and eat two taco supremes followed by a mexican pizza does not mean you should follow instruction. It turns out the stomach has a small IQ and a horrible memory. It has almost been 12 hours and I can still feel the ball of fast food hell eating a hole in my stomach lining. Oh, and in case you were wondering...if you cave in and listen to your stomach like I foolishly did..DO...NOT..BUY...FOOD...FOR...THE...KIDS...what they don't know won't hurt them. But when they come home from school 2 hours later and want to dine on what has your stomach in a vice, well you don't want to find out:)

That is all for now Ta, Ta, I am off to plays with the kiddos.


Friday, April 23, 2010

Busy Week - Busy Weekend

Hello All - Well, while I am still affected daily by my MG, I am happy to report the last few days have been quite nice. Yesterday I made it through a very busy day of work only having to take three breaks to rest my eyes. My legs didn't go out on me until 10pm and that is a huge accomplishment given that I was struggling from the time I woke up on Monday. My grip has remained weak and that interferes with my typing but I am trying as hard as I can to make do.

Today I woke up with the double vision and drunken sailor walk but was in good spirits, as was Pat. He just finished Winter Semester last night and is very excited. I am proud of him too for getting a 95% on his last Calc test...Woo of course he signed up for Summer Semester so there is only a week off before the craziness starts again but I am so proud of him. Pat sometimes thinks it is cute to do impersonations of me when I am symptomatic, I do not find humor in it but if it keeps his little caregiving heiney sane...have at it. I am so thankful to have his love and support. I know there are single mom's and dads out there battling chronic illness and I just don't know if I would have the strength to do it. I admire you.

Okay - Stress Updates -
6:30AM - Cindy woke up early with a stomach ache and I couldn't stand on my own so Pat grabbed her. Thank the Lord it was hunger and not the stomach flu that has been going around. I had high stress for a minute and then fell back to sleep.
8:00AM - Work computer not cooperating - Stress at a 10
9:00AM - Figured out the problem only to be hit with 20 trip requests - Stress at a 7
10:00AM - Traveler questioned my knowledge of a certain travel topic I specialize in 6 times. "If you don't trust me, please stop asking:)" - Stress at an 8
Rest of day - We'll See...

If all goes as planned and i am feeling okay I have a big weekend planned. My mother in law is going to pick me and the kids up on Saturday to see the play she has been working on, that will be fun. And John made a new friend so we are going to meet his family on Sunday. I wish everyone a Blessed Weekend.


Wednesday, April 21, 2010

Reflecting on my Blessings

I wanted to reflect on my blessings today. I am feeling quite well and have read some posts from friends that have gone through too many trials and tribulations. So I will list all the amazing things I have been blessed with in this life regardless of the crap that has been spewed in my general direction.

1. I was blessed to meet the love of my life, my soulmate, at the young age of 18...going on 19:)
2. Due to that fact we married and were blessed with 2 beautiful children before i was diagnosed with this ugly disease
3. My husband stands by my side, and literally lifts me up, when this illness gets the best of me.
4. My friends and family have rallied around me and given all of their energy to help make sure that my children don't suffer from my suffering.
5. Even though this illness can take me out of commission physically, it hasn't taken me mentally
6. My employer values my work so much they have allowed me to continue doing what I love from home so I don't have to go on disability.
7. I was blessed with children when I was well so I don't have the stress of trying to grow my family while this illness has taken so much from me.

I am feeling pretty lucky in life today. That is all for today. May God Bless my friends and family who have supported me with their love through this difficult time

Friday, April 16, 2010

Feeling pretty good

I've just finished my IVIG and I am doing pretty well. I'm tired from the benedryl but once that wears off I should feel like the energizer bunny. The session flew by today because I slept through most of it. It amazes me how far we have come with medical advancements. 50 years ago Mestinon was around but beyond that I would be in pretty bad shape. Fast forward to the present and not only are there three prescriptions to manage this uncurable disease but the IVIG would have been unimaginable. I am blessed to be able to receive treatment in my PJ's in the comfort of my own home. If I get hungry (which I do quite a bit with the steriods they use at the beginning of my treatment) I can cruise on over to my own fridge. If I have to go to the bathroom I use my own. I have full control of the remote if I am alert enough to follow the plot of a movie or TV show and the absolute best part of receiving treatment at home is opening all of the doors and windows and letting the fresh air flow through the house. I can't do that tomorrow as we will have quite frigid temperatures.

The temperature fluctuations in the midwest are as drastic as my condition. Yesterday it was sunny and 80 degrees outside, today it is in the 60s, tomorrow we will be lucky to hit 50. I'm going to try to be my own physical metorologist and really hone in on what kicks off my symptom flare ups. So, starting today I am going to jot down the amount of sleep I got the night before, any stress that was unexpected, and how I am feeling in general. My hope is to be more in tune with my body and reduce the triggers that are in my control.

Sleep - 9 hours
Condition in the AM - Quite weak, difficulty with speech and walking
Condition in the afternoon - Speech back to normal, still some intermittent weakness but not severe.
Stressors - Concerned about being ready for treatment on account of waking up late, everything worked fine and I was ready on time. Super stressed that I couldn't work today on account of the volcano from Iceland that is impacting many of my international travelers. Thank the Lord for Rosie running back up in my absence. I owe her flowers and lunch:)
Stress level (1-10) - 8AM - 7, 12N - 4, 3P - 4
Feeling in General - Pretty Good:)

Happy Weekend everyone! And thank you Kerri for your kind note.

Wednesday, April 14, 2010

Anxiously awaiting Friday...

My body is telling me it is time for my next treatment. It took 2 hours to get out of bed this morning. Do you have any idea how insanely irritating it is to start your day off not being able to lift your arm to turn off the alarm, knowing you have to get up to work, no one is in the house, and you have to pee? I wish I could say today was the only day but sadly, no this has become at least a once a week occurance.

I did get on the computer by 8:30 and kept my sheets dry so that was a major feat in and of itself - Ha! You gotta laugh at yourself right?

So update on the exercise bike...I got a hesitant, tentative okay. I had to promise to only do the lightest setting for 5 minutes every other day the first week, then bump it up by 5 minutes and follow the same routine the next week etc... If I felt, weak, dizzy, or anything else I am to stop and start back at a lower setting/shorter duration or just not do it that day.

On Monday I did my 5 minutes, I cheated and did it again in the evening and think I kicked major toxins that were locked in my muscles into the blood stream because the headache I experienced was of monumental proportions. Thank you Lord for making the maker of Imitrex!

In fun news, Pat is working on a video game project for his digital design class and had John and Cindy help him. I put a couple pics up for your viewing enjoyment...

Monday, April 12, 2010

Turning a new leaf

Things are looking up around here. I am still feeling pretty darn good. Well enough in fact that I have made a call to the neurologist to get the "okay" to start riding the exercise bike. My grandparents are downsizing right now and called last week to see if I would be interested in a "like new" Schwinn exercise bike. It is just like the one I used at the gym so I am super stoked. I don't want to kick off another exacerbation though so I will patiently wait for the call. See, with MG if my antibodies are on the rampage and I start working a muscle they feel called to action to strike and the last thing I want to do is send those nasty buggers to my legs again. It is killing me to look at the bike and not be able to use it but I'm being a good girl.

Spring Break has ended and the kids are back in school. Pat has a major project for his Software Engineering class so he is up to his ears in work and it is pretty quiet around here. I have the windows open, there is nothing like fresh air and sunshine to cheer one up. I just steeped some jasmine tea and I am enjoying the silence. I think this is going to be a good week.

Saturday, April 10, 2010

Had a good, "normalish" day - whoo hoo!

I am happy, and relieved, and content to post that I had a good day. A boring, run of the mill, livin' life on a Saturday kind of day that I hoped for for so looong. There isn't much to report but that but it is ALOT and I am so happy. I think this weather thing has alot to do with it. It was a nice sunny, not too hot, not too cold day. I had the windows open and the kids and hubby were in good moods and the whole day was just nice. I hope tomorrow will be the same. I am going to get some rest because that is important too. I hope all my friends and family out there are having a nice weekend as well.
Here's to normal -

Thursday, April 8, 2010

In need of direction, an answer, patience, or at least hope..

Okay, enough is enough, I am at my wits end. I cannot tolerate this lack of energy anymore. I am sore, weak, tired, and brain fuzzy. This is progressing into just being down in general. My blood test results were not startling enough to warrant anything other than some extra iron supplements and spacing my Imuran into one pill three times a day versus three pills once a day. It is getting rediculous the amount of pills I have to pop to survive. If I didn't know how I felt without them I may suspect them of being the culprit of my problems but I have had times when I have forgotten a dose and believe you me, I am in much more dire straights without the meds. To give my nearest and dearest an idea of how much work goes into just taking my pills I will layout for you how often I have to take my medicine.
6:00am - 3 pills - 2 types for MG (Myasthenia)
8:00am - 4 vitamins, 1 pill for OH (orthostatic hypotension) and sometimes 1/2 pill for MG
10:00am - 1 pill for mg, 1 pill for orthostatic hypotension
12:00pm - 2 vitamins, 1 pill for OH and sometimes 1/2 pill for MG
2:00pm - 1 pill for mg,
5:00pm - 2 vitamins
6:00pm - 1 pill for mg
8:00pm - 1 pill for thyroid
10:00pm - 4 pills for mg (three of these I will now divide and take with meals at 8, 12, and 5)
2X week change my estrogen patch
Albuterol if I have an upper Respiratory infection - usually needed once every couple of months
Pain medication as needed - try not to take and if I do it is only in the evening
IVIG - Treatment every 2 weeks for 6 hours straight
IV Prednisone - with my treatment
8 Benedryl day of treatment and tylenol day of treatment

So in any given day I have to take at least 22 pills including vitamins and in any given month I have to take 688 pills...crazy huh? I eat healthy, drink tons and tons of water, and I'm trying to exercise but that carries it's own risks.

Here are my blood test results, I finally got them in the mail. Next to the actual numbers are my baseline results from a little over a month ago. From the way that I feel it is significant but I guess it is too close to normal range for the doctors to do anything yet...yawn...
WBC - 3.6 was 5.19 at Baseline
Hgb - 11.3 was 13 at baseline
Hct - 32.8 was 38.7 at baseline
A/G ratio - .9 no baseline for reference but it says normal range is

In positive news, Pat is almost done with his first full year back in college and I am so proud of all the hard work he has put in. I am blessed to have an amazingly supportive group of family and friends that continue to come clean and babysit myself and the kids on my really bad days when Pat is at school. Work continues to go well, I am so blessed to be able to work from home, we would be begging on the street corners and I would not have access to medical treatment if I didn't have my job. The kids are filled with joy and I can't help but be happy when I am around them. For this I am most thankful. Your continued words of support and prayer are always appreciated. I will try to keep my body strong and my head positive. I know things have been dire on my blog but as important as it is for me to stay as calm and relaxed as possible, it is very therapeutic and diagnostically helpful to have an accurate representation of my journey so no fluff and puff here, just the nitty gritty, though I will continue to focus on the positives in my closing so as not to fall into a deep dark abyss.

Blessings of spring, sunshine, and strength to you and yours

Tuesday, April 6, 2010

Oh so sleepy...yawn...

Imagine having the flu for over a month. That is how I feel every day. I wake up with achy joints, sore muscles, and fatigue that is unexplainable in words. I don't know how much more of this I can take. I am waiting for a call back from my neuro in regards to my blood test results one month post starting Imuran. It turns out my white blood cell count, hemeglobin, hematocrit, and a/g ratio are all low and it is making me feel like absolute crap. If you google it, you come up with the boy in the bubble or other scary stuff. Basically I have no immune system and zero energy right now. I want to go back to feeling crappy the way I got used to, at least I could function then. Sorry so down, I am just sooo tired.

In more positive news, the kids had a blast for Easter. Cindy calls the Easter Bunny "Bunny Easter." John is getting a little too old, but never too old for candy and money:) I woke up Easter morning unable to walk, about 2 hours later I was mobile and then during brunch I couldn't use my hands any more, kinda hard to eat when you can't hold a fork...that passed as well, don't worry I'm not starving:)