Summer and MG

Since we are in week two or more of weather in the 80's 90's I thought I would take a moment to address MG and heat. People with autoimmune diseases know all too well what the worst triggers for their illness are. These include stress, illness, infection, and obviously heat. Thankfully I have air conditioning, however it is a catch 22 because I LOVE SUMMER. Unless I am in a pool I cannot tolerate the temperature if it is above 75, I literally melt.

This morning it took 2 hours for my legs to work well enough to get out of bed. It is now 5:20pm and I am still stumbling and using the walker for safety reasons. In addition to my legs giving out the MG has attacked my muscles used for speech so it has been a quiet day in my home. I sound like a drunk when I talk and if I talk too long I have swallowing difficulties.

I know this sounds absolutely mortifying and while it is no walk in the park I am thankful that I have kept the breathing and swallowing difficulty at bay enough to avoid the hospital. Tomorrow is treatment day for me and for those of you who follow my blog you are well aware that as the days draw nearer to treatment I go downhill. The heat has just gotten the best of me this go around. I think two weeks ago it was my legs and eyes. I don't know why my legs have been a constant as I rest them when I am weak, maybe they just haven't had enough time to recover?

Some good things have happened in the past week that I would like to post on as well. Saturday was the Annual Meeting for the Great Lakes Myasthenia Foundation and it was a wonderful event. I met some new people and got to meet a few friends in person for the first time. The speakers did a fantastic job. Lisa Gigliotti was there to tell her encouraging story of living with courage and battling RA and MG. Dr. Glisson, a neuro opthalmologist presented a great presention with video on Ocular MG.

Wednesday, the radio show I taped 2 weeks ago aired locally. You can download it for free on iTunes, just search "The Johnnie Tuitel Show" or you can listen to the podcast here... http://www.publicrealityradio.org/programs/the-johnnie-tuitel-show/episodes/show-5-jen-walsh

I hope my readers are having a strong blessed week!
Jen

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
1-2


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