I know, I know........................I haven't posted in AGES!!! *sigh* Things WERE going so well. I mean I DO have MG -- but, I was "at peace" with "the beast". REALLY, I was. My voice was NEVER good -- but, my other symptoms would wax and wane. I was able to get by -- doing things that I "needed" to do -- on days that I was "able" to do them. And able to find things that I enjoyed doing WITHIN the parameters of my "new", limited MG abilities.









BUT, this summer, something happened. I still don't know WHAT!!! Summers have ALWAYS been good for me. It is like I have THREE months of almost "normal" -- and those three months let me endure the other nine months of "abnormal". But, this summer I never "kicked in" to "normal". I never got my strength or endurance "up". Usually, when the weather starts warming up here in the Mid-South, I start walking outside. I gradually increase until I am walking one mile in the morning and one mile in the late afternoon. This thrills my MG guy to NO end. It makes me pretty happy, too! Good for my body AND my psyche! Anyway, this past summer, I just couldn't get into the "groove". My body didn't want to respond. Then, in July, the HEADACHES started.








I took IVIG soon after seeing my current MG guy -- he was trying to get me ready for the thymectomy which I SOOOOO wanted. The first day of IVIG was fine. The infusion nurse said I drank more than any other patient she had ever seen (which was GOOD). The second day of IVIG I continued to hydrate. About 7 PM that night, I got the WORST headache -- none of my migraine meds would even touch it. Took the maximum amount of meds and lay in pain until the next morning. Called the MG guy asking for something stronger -- he said "get thyself to the ER, NOW!!" Turns out I had what was aspeptic meningitis (or something like it). I had been a migraine sufferer until menopause MERCIFULLY swept the vicious headaches away. But, apparently, whatever happened with IVIG "fried" or re-wired my brain. I now have migraines again -- different, and often more painful.









Anyway, since July of this year, I've been having headaches about 20 days each month. A couple of days each month, the headaches are KILLERS -- the kind that make you want to die -- seriously. I recently read a post by a woman who said that natural childbirth was a "breeze" compared to her migraines. I have no experience in this area. But, I can tell you this -- I broke my foot and walked on it for a couple of hours. It wasn't "nice" -- but, it was "easy" compared to a KILLER migraine. I've donated blood with straw-like needles -- easy-cheesy. I had a venous catheter inserted in my neck with a local anesthetic -- NOTHING compared to a migraine. With KILLER migraines I TOTALLY understand why people commit suicide. I'm NOT "there", yet -- but, I "understand".









So, I'm on Topamax (which makes my stomach hurt and gives me diarrhea, makes my hair fall out at the dose my headache guy wants me to take, and makes me STOOPID). I also take Fioricet (up to 6 per day -- which I've taken WAY too often lately). And, I'm taking Maxalt -- which makes me feel like..........................well, it is hard to explain how Maxalt makes me feel. Let me just say that I feel paralyzed and insane and like I can't take a good breath. And when the Maxalt starts working, I SWEAR I feel like I am growing "horns". But, so far, all THREE of these drugs are not getting the job done. I've resorted to adding 1/2 of a Percocet a couple of times. My head stops pounding -- but, at what cost? I'm incapable of a reasonable thought or sentence or even walking a straight line. I'm a mess. What quality of life? Yep, a BIG ole pity party going on here. Do I KNOW that people are worse off that I am -- people with cancer, ALS, strokes, in wheelchairs, etc. -- OF COURSE!! And, I feel guilty for being a whiny-butt. But, my head is HURTING -- and it seems like it is ALL THE TIME. It is just so hard to be focused on others when I am in extreme pain. :(









Anywho, my MG is worse, too. I've had exacerbations -- haven't we all?? Most of my exacerbations were due to illnesses -- the flu, colds, a stomach virus, etc. So, this worsening has not "seemed" like an exacerbation. I'm not SICK. But, I'm having wicked DOUBLE VISION -- so bad that I'm not driving much. I can't close my eyes properly -- washing my hair is sooooo much fun, now (NOT!). I'm choking -- especially when trying to swallow my meds. I found out at a dr. appt. a couple of weeks ago that I cannot lift my legs off of the examining table. I already knew that I was having MUCHO trouble climbing into the back of my truck. ARRRGGGHHH!!!









So, my MG guy says that my migraines are exacerbating my MG AND my MG is exacerbating my migraines. Huh? I'm in some kind of vicious circle -- a dog chasing his tail kind of thing. I'm SOOOOO afraid that I'm gonna have another migraine that I'm stressing myself and THIS is exacerbation my MG. And, apparently, my MG is affecting the muscles in my neck and shoulders (if I understood this correctly) and this is making me have more migraines. Are we having fun, yet?









So, I've got another med to try -- I'm gonna have to be "watched" -- it could potentially cause problems. But, heck, the meds that are SUPPOSED to be problematic are usually FINE with me -- and the ones that are supposed to be SAFE usually put me UNDER the floor. So, I'm not really worried.









Well, I've written a book.....................and am not sure when I'll write again. But, I'm hoping that "letting it all hang out" will be cathartic. Hey, I remembered a word!!! Maybe the Topamax isn't doing as much damage as I thought.









Later.

I had to UP my Topamax to 75 mg on Friday -- I had a headache everyday for about a week, then it finally dawned on me -- it is TIME to increase the dose!!! On Saturday, I was mowing the yard (riding mower) and a wayward hornet got irritated -- OUCH!!! My leg didn't swell (thank you, Zyrtec), but it BURNED for several days and I now have a BRUISE. The BAD part -- this sting kicked my Myasthenia Gravis into gear -- arrrrrggghhhhhh!!! Double vision started back by Sunday -- and I am sleeping about 10 hours every night. I haven't noticed any significant leg weakness -- that is a plus. My allergy doc used to say that it took 30 days for sting venom to clear the system, so...........the clock is counting!!!

Yes, I am still here. I really thought that I would add to my tale of Myasthenia Gravis every day or two -- but, I guess I didn't realize how busy I would be this Summer. How WONDERFUL to be busy!!

I've had a minor problem -- arrrgghhh!! I was weed-eating the other day -- around the lake in front of my house. The lake doesn't belong to me -- but, I get to enjoy the view, so I like to contribute to its upkeep. I got about 1/3 of the way around -- felt a little tired/winded -- so, I rested for a few minutes. Started back and kept on going. About 2/3 of the way around, I got tired again. (Note to self: IF you ever again get tired TWICE, STOP and go inside!!!!) After resting, I started again. Mom, my baby-sitter for the day, drove by to check on me -- I asked for something to drink. When she brought my weak tea, I made a mistake -- I drank tooooo much, tooooo fast. I was ok for an hour or two -- l finished the weed-eating, got a bath, and ate lunch. Then, WHAM -- my stomach -- OH, my STOMACH!!!!

If you know much about horses, you do NOT want to give a hot horse very much to drink -- especially not something cool -- because it can cause COLIC -- VERY serious in a horse -- even deadly. NOT so serious in me, but it made me pretty miserable. It has been several days -- I am just now feeling better -- my stomach is STILL sore.

When my stomach misbehaves, so does my MG. So my voice has been even WORSE than usual and my right eye is all droopy. And, so it goes.

Myasthenia Gravis is WACKO!! Let me explain. I've been working like a "hoss" out in my yard for more than a month -- sweating, mowing, hauling gravel, etc. -- no problems -- feeling good -- getting stronger day by day. On Tuesday, mom, mom's baby sister, and I all went to the "big city" to visit relatives and take them veggies from the garden. We didn't leave early or rush ourselves. We even got home at a decent hour. I was BEAT!!! EXHAUSTED from sitting in a car, sitting on a porch swing, and talking to loved ones. Then, yesterday, I went to the "little city" with my sister (she had a doctor's appointment). We didn't rush -- did a little shopping afterwards -- and got home by middle of the afternoon. Again -- ME, beat like a STICK!! I fell INTO the bed last night -- not even sure I turned over while I slept. I think I must have slept about 9 hours. I am still tired today. I walked this morning -- my regular mile -- but, it was EXCRUCIATING.

So, let's recap -- working HARD at manual labor -- doesn't seem to be a problem as long as I am at home and OUTDOORS -- keeping a HIGH fluid intake and taking breaks when I need them. LEAVING my home and being exposed to ??????chemicals/stress/toxins?????? takes EVERYTHING out of me. See what I mean?? MG is WACKO!!

Yesterday was not so good. I didn't sleep well Monday night -- stayed out too late working in the yard -- ate supper late, etc., etc., etc. So, all day Tuesday, I felt like I HAD Myasthenia Gravis. Yeah, I know -- you are all saying that I DO have MG -- but, this summer, I have felt pretty good -- like the "beast" was FAR, FAR AWAY.

In 2005, right before I was diagnosed, we went to Disneyworld. Mom rented a huge house for 10 days (great deal -- MUCH cheaper than hotel rooms) -- 5 bedrooms, 4 bathrooms, a pool -- so, each child, spouse, and grandchild had a bed and privacy. I got PLENTY of quality sleep on that trip -- but, in the middle of our stay, caught a cold. I had been walking a couple of miles a day -- suddenly, walking even 50 ft wore me out. This is how I felt yesterday. SOOOOOOOOOOOOO, having LEARNED my lessons (LOL), I came INSIDE and took a NAP!!!

My point?? MGers NEED quality sleep!!! I sleep UNTIL my body says that it has had enough!!! NO alarm clocks EXCEPT on Sundays (church). I make doctor appointments in the afternoons so that I don't have to worry about waking up early.

I had a good night's sleep LAST night -- so, hand-mowing and weed-eating are on the schedule for today!

I HAD been feeling GREAT -- even went to a wedding this past weekend (my dad's sister's grandson) -- 3 hours there -- 3 hours back. My sister said that each and every family member cornered her wanting to know exactly WHAT Myasthenia Gravis is -- and how I am doing. I just love this family!!!!

Anyway, on Tuesday of this week, I was outside -- WITH the gravel -- and I kept on hearing a small plane. There are a lot of trees in our area, so I didn't see it at first. When I finally figured out WHAT was going on -- a CROP DUSTER!!! Haven't seen one of those nearby in years!! TOOOOOOO late to go inside -- wouldn't help anyway. Whatever he/she was spraying would get into my air conditioning system. Don't know if it was an herbicide or a pesticide -- a pesticide would be worse for my MG. By Tuesday night, I had a mild headache. By yesterday, my MG was acting up again -- ARRRRGGHHHHHH!!! Today, I'm still not feeling well.

So, here is the deal -- I am fine IN my own house -- where I can control the air quality -- no perfumes, chemicals, pesticides, etc. I am USUALLY ok outside -- we are in a mostly rural area -- the air quality is good -- UNLESS there are CROP DUSTERS! I have BIG problems in buildings. Older buildings -- with mold/mildew are BAD. Stores that sell chemicals -- Wal-Mart, Home Depot, Lowes, etc. are bad during certain seasons. Department stores -- lots of new clothing (formaldehyde) and perfumes -- AWFUL!! Schools -- the wax they use on floors and the bleaches and other strong chemicals they use to keep bathrooms clean -- YIKES!!!! So, in short, I am NOT a "prisoner in my own home" -- but, I need to be pretty careful about where I visit.

Yesterday, I was outside most of the day using the Weed-eater. I'm sure that I didn't look like I had Myasthenia Gravis. To be honest, I didn't feel very different than BEFORE my diagnosis. It was HOT, HUMID and MUGGY -- like only the South can be -- especially after weeks of rain. I LOVE it!! (I can hear you asking, "What is WRONG with that girl?!?!?") My neuro still scratches his head -- he warns me at the beginning of every summer to AVOID the heat -- and I stubbornly remind him that I am "weird" -- I do NOT get worse in the heat like most MGers.

This week I am contemplating cancer. A dear email buddy sits at home today recovering from breast cancer surgery. She has done EVERYTHING right -- she eats all the right foods -- never takes medicines -- lives a healthy life in every way possible -- so why did SHE get cancer?

I wonder about autoimmunes -- our bodies get confused and attack our OWN cells. In cases of cancer, bodies do NOT recognize that cancer cells are DIFFERENT and SHOULD be attacked. So, maybe autoimmunes disorders are good? Are people with autoimmune disorders less likely to get cancer? I know that immune suppressants make you MORE susceptible to cancer -- but, what about a person with an autoimmune disorder who does NOT take an immune suppressant?