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

Some corrections, and a work update

Good Morning, I wanted to start off by making some corrections to previous posts. The first was my description of how Mestinon works. It doesn't send more messages, it actually allows the acetylcholine to hang out at the neuromuscular junction longer allowing it to have a better chance of hitting on a healthy muscle receptor. I'm super tired today, which leads to brain fog and since I didn't write them down I will have to post the rest of my corrections at a later time. Oh, I remember one more, I had asked for prayer for my father in law, keep them coming. His surgery was supposed to be this week, it is now going to be at least 3 weeks out, maybe more, pray for a cancellation.

Our family had a wonderful day yesterday. We had a birthday party for John. It was a pool party for him and four of his friends. We timed it between check out and check in so they had the whole pool and a lifeguard to themselves. Five 10 year olds each armed with two squirt guns, goggles, and a large indoor water slide = FUN!


Back to the subject of work. My big meeting went very well. I will be putting in more hours because it has been decided that I may work from home!!!! The difference between waking up, logging on, forwarding my phone, taking a real rest during lunch hour, and hopping back on for a few hours versus waking up, getting dressed and prettied up, driving 25 minutes to work, and then working will give me a MUCH MUCH better chance at returning to work healthy and productive. I will start my new schedule tomorrow. Thank you everyone for your support, even though most of you don't know how to sign up to follow the blog:) At least you email your feedback.

Lots of Love,
Jen