Thursday, July 30, 2009

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!!!

Sunday, July 19, 2009

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.

Thursday, July 9, 2009

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!!

Wednesday, July 1, 2009

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!

Thursday, June 25, 2009

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.

Wednesday, June 17, 2009

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?

Saturday, June 13, 2009

My Myasthenia Gravis continues to behave -- except for my voice. I just can't talk for more than a few minutes. Normally, this is not a big problem -- I'm no longer working -- and I'm not a big talker, anyway. Last night, however, it WAS aggravating. A huge storm system came through our area -- on the SAME day that the TVs went from analog to digital. We are on cable -- and we have been assured REPEATEDLY that there would be NO problems -- seamless service. Yeah, right! My sister called from the city to say that a main street looked like a Tornado had hit -- trees were down EVERYWHERE. We had been in the backyard in the pool -- had just gotten out due to the distant rumblings of thunder. I wasn't about to turn on the computer, so I turned on the TV -- ARRRRGGGGHHH. All of the local stations said -- "No Signal". At first, I thought that all of the stations must have lost electricity -- how horrible. But, my sister called back later, from a restaurant with a TV, and said that she was watching the local weather -- reception was fine. Oh --- light bulb moment -- digital conversion day. So, I called my cable company. I got a recording -- they were going to "finish" the digital adjustments at midnight. WHAT?!?!?!?!?! Here we are -- SITTING in the middle of a MAJOR storm -- unable to get local reception and SEE what is going on!!!! These folks have had months -- years -- to get ready for digital -- and on the day of arrival, they wait until the very, very LAST minute??? I was AGITATED!! Stress makes my speech even worse -- but, I was bound and determined to try. The lady I talked to was VERY, VERY nice -- in a different state -- FAR away from the storm. She took my information -- of course, there was nothing she could do -- nothing anyone could do -- but, what if this incompetence had led to a storm-related death or injury?? By the time I got off of the phone, I couldn't even understand my own words -- it just sounded like I was making grunts, moans, and groans.

Thursday, June 11, 2009

Have I told you about my gravel? As part of my Summer Myasthenia Gravis Exercise Program, I purchased 10 tons, yes, that is TEN TONS of pea gravel. Actually, when I ordered the gravel, I didn't realize that it would take the ENTIRE summer to get it moved -- LOL!! I have a couple of projects around the house -- some flower beds -- an area around my nephew's pool -- and, of course, the driveway can ALWAYS use some new gravel. (I have two HUGE oak trees -- one on each side of my driveway -- their roots prevent me having a concrete or asphalt driveway.)

We got one of those 16' Intek pools from Wal-mart with a blow-up ring at the top -- we have had the 10' and 12' ones in the past -- each lasted for a couple of years -- well worth the money and the effort. My nephew is nine this year -- and wanted a bigger pool -- OH MY GOODNESS!!!! It took almost EIGHT hours to fill this monstrosity!! And, now, it looks like I have a blue UFO sitting in the back yard!!! We have had a lot of trouble with getting them level in the past -- so, I have been working with pressure-treated 2" x 6" wood and LOTS of dirt for several weeks!! Thanks to my nephew's LOVE of mud -- this year we covered everything with either weed fabric OR the pea gravel. It is BEAUTIMOUS!! When I get it all finished, I will try to figure out how to post a pic.

Now, back to the TEN TONS of gravel. It was $16 a ton delivered -- a very reasonable price -- especially compared to what you pay if you buy it in a bag at a store, so.............having NO idea WHAT a ton even LOOKED like..............TEN sounded like a GOOD number, right?? There are MOUNTAINS sitting in my driveway -- waiting to be loaded into a wheelbarrow. Yes, I will be moving gravel ALL summer long. I am now calling it my "Summer Gym Membership".

We have been talking about back problems in the group. Apparently, a lot of MGers HAVE back problems -- perhaps due to our weakened muscles. I am going to do everything I can to make sure that my muscles get strong -- and stay strong.

Tuesday, June 9, 2009

Did I tell you that I have "babysitters"?? I suspect that MOST people who have Myasthenia Gravis are in the same boat -- *sigh*. Now, don't get me wrong -- I so appreciate that my family loves me -- that they worry about me -- that they don't want to see me come to harm. But, now that I am TRYING to get myself back into "shape" (per my neuro's "orders"), it seems like I am fighting an uphill battle -- the war between me and the "babysitters".

Perhaps I should explain. Every since Thanksgiving a couple of years ago, when I had a "breathing spell" and really, SERIOUSLY thought that I was going to die -- my entire family has been very, very protective. I am seldom left alone. Mom is with me during the days -- if she has to go somewhere, her baby sister comes over to watch me. My sister and BIL live next door to us -- they are part of the team, too. I just go about my "business" when I am being watched -- my hard-headed, "do what I want to" business. When I am IN exacerbation, I am the model "child" -- easy to "control" -- I don't "overdo" or stress my body if at all possible. But, right now, I am doing everything POSSIBLE to get myself back into shape. This is NOT a vanity thing -- I MUST recover as much muscle as possible between exacerbations. So, I am PUSHING myself -- BIG TIME. And, the "babysitters" are FRANTIC!!!! "Oh, don't you need to sit down and rest??" "You are doing WAY too much!!" "Let ME do that FOR you!!" And on, and on, and.....

They mean well -- but, now I feel like I have to fight with my reluctant BODY AND with all my loved ones!!! I keep on saying, "I KNOW when to stop and rest -- I PROMISE!!!"

Sunday, June 7, 2009

I am "hard" on docs. I mean, I expect my docs to know all about Myasthenia Gravis. Maybe I'm not "playing fair". After all, MG WAS the subject of an Episode of "House" on Fox (TV) -- that means it IS obscure and rare. If Dr. Gregory House had to be called in to figure out the case, how can I expect mere "mortal" docs to know all about my strange malady, right?

Actually, I have been BLESSED. Although my first neuro was dismissive of my suggestion of MG, he DID run the blood test anyway. I can't really fault him for being skeptical -- I didn't have a droopy eyelid or double vision -- the most common symptoms.

By and large, I have been treated with dignity and respect by most of the medical professionals that I have encountered. I have good health insurance -- I realize that may have something to do with it -- good coverage = good doctors and good hospitals.

Yesterday, I read Wendy's blog. I wanted to cry -- LITERALLY!! Wendy has settled up North after traveling the country in an aged RV -- and now she is getting some really pathetic medical care from a smart alec who seems to lack any compassion. I mean, having MG is bad enough -- then, throw in a HORRIFIC doc -- ARRRRRGGGHHHHHH!!! Bless your heart, Wendy, you deserve better!!! You are in my prayers!!!

Saturday, June 6, 2009

When to PUSH -- when to BACK-DOWN. That is always the question with Myasthenia Gravis and exercise. If my neuro had NOT just checked my strength and given me the THUMBS UP to start exercising, I would NOT be "pushing" right now. Oh, man, I would SO not be pushing!! My thighs are called me "dirty" names -- and my left knee is making noises when I go up the stairs!! I KNOW that this is just part of the "program" -- that I am just going to have to "grin and bear it" -- but, I swear, if somebody gave me even HALF an excuse, I would be sitting on my bottom instead of walking in the morning and again in the late afternoon. Twice a day?? Am I a glutton for punishment, or what??

Yes, I am griping -- and I'm soooooo sorry that you are having to READ this!! I know that by Tuesday, I WILL be over this soreness -- the endorphins will start to kick in -- and, once again, I will actually ENJOY my exercise routine. But, right now, my body is SCREAMING -- and it "ain't" pretty!!! ARRRRGGHHHHHH!!!!!

The worst part?? I know that I will face this AGAIN at the end of my next exacerbation. Ok, trying to think of some "pithy" saying....................naw, nothing comes to mind. Except, maybe.......yeah, I should be thankful that I at least HAVE this opportunity -- I am not in a wheelchair. Ok, I am chastised. I will SHUT up!!

Friday, June 5, 2009

I continued my Myasthenia Gravis exercise program this morning -- arrrggghhhhhh!! The worst part is the STRETCHING!!! With MG, I have lost my balance -- or maybe I have lost my ability to STAY balanced -- WHATEVER, I weave and stumble like a drunk. One of the stretches I do is pulling one knee at a time up to my chest -- while I am in a standing position. Prior to MG -- NO PROB!! Now, somebody needs to be shooting America's Funniest Video!! Even when I put my back to a wall for support, my efforts are comical!! I fall to the right, to the left -- I look like one of those bobbing-head dolls -- except my WHOLE body is bobbing!

Another stretch is the Achilles tendon -- I stand on the edge of a step or curb and lower my heels. OUCH!!! 3 months of exacerbation can really do a number on a body!!

Finally, I do toe touches. For some reason, if you have MG, your lower back usually gives you problems -- something about the hip flexors (??? remember, I'm not a doc, PT, or anything close). I have to really, really be careful with trying to touch the ground -- I spread my feet far apart at first, and if I don't make it all the way to the ground, OK. I do NOT push -- or I will pay later. These lower back muscles seem to be the most delicate (strange, huh??) -- but, are definitely the MOST important as far as I am concerned. I sorta like having a back that doesn't hurt!!

I'm gonna be sore for about a week -- not thrilled -- but, like exacerbations (3 months long), I have learned the "timetable".

Wednesday, June 3, 2009

I started my Myasthenia Gravis exercise program today. I walked 2/3 of a mile this morning and 2/3 again this afternoon. When I was walking this afternoon, one of my neighbors stopped me and asked WHY I was walking so slowly. I explained that my neuro had just "given me permission" to exercise -- and I was WAY out of shape. This particular neighbor has MS -- a rather bad case -- she is quite forgetful -- can no longer drive a car. But, when she is out and feeling good, I always enjoy talking to her -- we share neuro stories -- LOL. She raves about how handsome hers is (she gets tickled that she can ALWAYS remember this fact) -- I rave about how kind and compassionate mine is. We have a lot in common -- neither of us has much pain from our disorders -- and that is SUCH a blessing!!

I have made a new internet friend who has Rheumatoid Arthritis and Fibromyalgia. She lives in Florida -- can you imagine?? All of the heat and dealing with these TWO very painful disorders?!?! On top of that, she is allergic to many, many medicines, including the ones that are commonly used to treat RA and Fibro -- I do NOT know how she copes -- really.

As my MS neighbor pointed out -- there are WORSE things than MS and MG -- AMEN!!!

Tuesday, June 2, 2009

Myasthenia Gravis IS the most peculiar disorder!! I went to see my neuro yesterday (the MG specialist) -- I see him 3 or 4 times a year. He said that my strength is good -- he thinks that my voice may eventually return to "normal" -- and that I need to EXERCISE. I am all for that -- I have already started!!! Every exacerbation takes away muscle mass -- I have to rebuild as soon as I regain strength. It is a constant battle.

Ok, I got off the topic -- "PECULIAR disorder". After seeing my neuro, we decided to do a little shopping -- being in the big city and all. I used my handicapped tag and was careful to ALWAYS hold on to a shopping cart. Everything was fine for an hour or two -- until.........we were in the checkout line at Target -- I had just paid for my purchase -- all of the sudden, I couldn't catch my breath or stand up straight. My sister, who always accompanies me to doctor visits (she's my patient advocate) looks at me and says, "WHAT is wrong?" I couldn't even tell her -- I just had this LOOK on my face.

Fortunately, we were VERY close to the car. YES, this is one time I should have use one of those motorized carts, but I felt FINE going INTO the store ---- arrrgggghhhhh!!!!

As soon as I sat a while and got something to drink (I always take a cooler of tea/water on these trips), I was ok -- and, we headed for home. As I said, MG is PECULIAR. You can be FINE one minute -- ready to fall on the floor the next.

Monday, June 1, 2009

I'm eating yellow squash and zucchini from my garden!! When you have Myasthenia Gravis, it seems to help to eat fresh foods. I will be eating from my garden all summer -- and feeling better. I love summers!!! I also feel better when I am outside (fresh air??) -- and I have noticed that I "crave" sunshine. There seems to be a lot of speculation among medical professionals that there is a connection between Vitamin D and autoimmunes. My neuro checked my Vitamin D level at the end of last summer -- it was in the low normal range -- and that was after I had spent ALL summer outside -- and, forgive me, I had a TAN. So, I "think" that my Vitamin D levels should have been out the ROOF!!!

Saturday, May 30, 2009

Allergies and Myasthenia Gravis -- is there a connection?? I have had allergies ALL of my life. When you have allergies, your body gets "confused". It thinks that harmless things like pollen, dander, dust, foods, etc. are the ENEMY and must be ATTACKED!!!! Myasthenia Gravis is an Autoimmune disorder. In autoimmunes, your body gets "confused" and thinks that some of its OWN cells are the ENEMY and must be ATTACKED!!!! In MG, the neuromuscular junction is attacked. Antibodies are made that destroy some kind of receptors (hey, I'm not a doc and I'm not even going to TRY to get technical here). But, these antibodies can be detected in some tests -- AChR and MuSK bloodtests. There may even be OTHER antibodies that they have not developed tests for, yet.

My allergies are STILL acting up. We have had a LOT of rain this Spring -- and stuff is blooming everywhere. My regular antihistamines have stopped working. The allergy shots that I took for about 15 years seem to no longer be helping. So, I'm trying a new antihistamine. It seems to be slowing my brain a little -- so, if you see typos.......GET OVER IT (LOL).......but, I didn't "suck" the roof of my mouth as much last night. If you have allergies, you understand this itchy mouth thing -- which can drive you PAST insanity!!!

Thursday, May 28, 2009

This morning I got my Google alerts. I read about a woman in Texas who is suing the police and just about everyone else in the city. Here is the scoop. She has MS and was driving erratically. She was stopped by the police and told them she had MS -- they knew NOTHING about it -- and arrested her. She was charged with DUI. There's a whole lot more to the story -- probably even more than what I read -- but, here's what scared ME. I have Myasthenia Gravis. I OFTEN appear to be drunk -- I sometimes walk AND talk like I a drunk. I even carry a laminated card in my billfold AND in my car that says "I am NOT intoxicated, I have Myasthenia Gravis" -- and it goes on to describe the symptoms. It even has the names and telephone numbers of my two neurologists, my general practitioner, and my pulmonologist -- the four doctors who DO know about my MG. BTW, I do NOT drink alcohol -- AT ALL -- never have!!!

I read about a lady who lived in an apartment somewhere in New York. She was being harassed by her neighbors. She complained to the police. When the police came to investigate, the lady sounded drunk -- yes, she has MG -- so, the police took HER into custody and she collapsed. They called some paramedics -- she told them she had MG -- they had never HEARD of it -- the police thought she was lying. It was a NIGHTMARE. She is now TERRIFIED of the police AND the paramedics. What a way to live!!!

Wednesday, May 27, 2009

One of my bestest online buddies needs to have a "new" treatment -- either IVIG or PEX. IVIG is Intravenous Immunoglobulin. PEX is Plasmapheresis. We use abbreviations a LOT in the MG world -- LOL. I'm not going to go into explanations about what these are -- you can look them up -- there are PAGES and PAGES of info -- arrrrrgghhh. My friend has lots of problems besides MG -- bless her heart. She was diagnosed with PH (pulmonary hypertension) -- a very bad illness. She also has heart problems and is now having kidney problems. All of these problems in one of the sweetest, kindest, most compassionate Christian women that you could ever meet -- and she is only in her 40's. She has such faith -- and although we may never meet on earth, I know that we will see each other in Heaven!!

So, at first her neuro wants to do IVIG -- but, her nephrologist is NOT sure that her kidneys can handle it -- IVIG is very hard on the kidneys. I am not a big fan of IVIG, anyway. I had two days -- my first day was a BREEZE -- about 3 hours after my 2nd treatment, I got the WORST headache in my LIFE (and I suffer from migraines so I KNOW what a bad headache feels like). My migraine meds and even pain pills wouldn't touch this headache -- so, the next morning, I ended up in the ER -- CT scan, Demerol, Phenergan, Morphine (which made me sick as a DOG) -- and I was sent home. The IVIG sent me into an exacerbation that lasted for 3 months -- my neuro said "no more".

So, now my friend's neuro is looking at PEX. I am nervous for her. I have read that PEX is not good for people with heart and kidney problems. And, you guessed it, I had SOOOO much fun with MY one and only PEX treatment. I had a central line surgically implanted in my neck on one day (what fun -- NOT!!!) and went for PEX the next. The nurse tech did NOT think I even looked like I had MG -- this is a common reaction -- but, he was in for a surprise. The hospital where I went for PEX does this 6 days a week -- they have hundreds of patients a year -- they KNOW what they are doing -- they have seen it ALL -- but, they had NEVER seen a reaction like mine. As soon as I was hooked up, the machine was turned on -- slowly -- and my legs began to quiver and shake -- like I had a high fever or was in a tub of ice water. Two other nurse techs and a doctor all came to see what was going on -- they could NOT figure it out. I was given Benadryl and a Calcium Bolus -- they put my head lower than my feet -- nothing seemed to help. The machine was slowed down even more -- this helped a little. I was asked if I wanted to stop. NOPE -- I'm a "big girl" -- I am going to DO this!!! A man with CANCER came in and had PEX in the next bed -- with NO problems. He finished in a couple of hours -- I was there ALL day long!!! When my treatment was finished, I was given extra IV fluids. Then, I was slowly raised to a sitting position -- sat there for a while. Then I slowly put my legs over the edge of the bed -- sat there for a while. Then, with my sister under one arm and the nurse tech under the other, I stood up SLOWLY. OHHHHHHHHHHHHHH -- I said, "I think I'm going to pass out." And I did. My bp went to 44/16 -- the automatic cuff was still attached to my arm. Actually, I "died" -- I even saw heaven. But, that is another story. I came "back" with my feet on the nurse's shoulders and my sister calling my name. Except for MG, asthma, allergies, and migraines, I am pretty healthy -- but, PEX did a number on me. So, I am VERY worried about my precious friend.

Tuesday, May 26, 2009

We need a Michael J. Fox. There, I said it. I am sort of ashamed of even thinking or seeming to "hope" that someone famous gets this horrific disorder called Myasthenia Gravis -- but, then I look at what Michael J. Fox has done for Parkinson's. Is MG as "bad" as Parkinson's?? It can be -- sometimes it is worse. We have several members who are on a first name basis with their wheelchairs/powerscooters. There are MGers who are hooked to ventilators. One of my dear friends lost the use of her voice (not in the normal MG way) -- but, because she was on a ventilator for so long due to respiratory crisis. She almost died several times -- and now, she has a battery-operated talking "thingy" that she holds to her throat.

MG is rare -- there are different statistics -- I could quote them for you -- but, what is the point? Most doctors (general practitioners) may only encounter one or two MGers during their lifetime of practice. Even general neuros do not see it regularly. Since we are rare, it is not "cost effective" for pharmaceutical companies to develop drugs specifically for us. *sigh* There was one that we were all keeping an eye on -- Monarsen. It was being developed in Israel -- and it looked like it would do an even better job than our Mestinon. But, it was bought by another pharmaceutical company -- and apparently, they decided that there weren't enough MGers to make further development of the drug worthwhile. BIG *sigh*

Do ya know anybody famous with a droopy eyelid or double vision??

Monday, May 25, 2009

The MGCTHT group topic "de jour" today seems to be -- "How does Myasthenia Gravis affect your relationships?" Man, this is a DEEP one!!! For those of us who are married -- relationships are either strengthened OR strained. For those of us who are single -- TRUE friends are discovered. Chronic illness is tough -- PERIOD. Cancer, paralysis, stroke, dementia, ALS (Lou Gehrig's) -- those are a few that come to mind where spouses, family members, friends DO often, but NOT always, seem to rally around the patient. MG is somehow different. Family, friends, even those medical professionals who are NOT familiar with our symptoms, doubt the sudden onset and severity -- UNTIL they witness it first-hand. Trust me, it ONLY takes once to make most of them believers. The MAIN problem is that SOMETIMES, we "appear" to be "normal". So, people "assume" that we must be faking/exaggerating our condition.

I cannot speak for everyone -- but I DO know several MGers face-to-face -- and THEY are like me -- we do NOT "crave" attention. In fact, I INTENSELY want to "fade" into the background. I want to view life from the "sidelines", if you will. MG irritates the "snot" out of me in this regard. I do NOT want to be noticed -- NOW, everyone is constantly asking about me -- "How is Jana, today?" "We haven't seen her in awhile, is Jana ok?" "We saw Jana walking and she was dragging her leg, is she ok?" -- and on, and on, and on. Let's not even TALK about the looks on faces when people hear my voice -- my slurry, drunk sounding voice!!! OH, just let me be invisible!!! (Yes, I know that these friends and family members are VERY loving and kind -- and I DO appreciate their prayers and concern -- I have just always been a very private, independent person -- and MG is "getting in my way"!!!)

Ok, enough of my rant. The point is -- because we wax and wane -- our symptoms "come and go" -- SOME people think that we AREN'T as seriously ill as we ARE. Case in point: A wife with MG who has worked all day comes home and collapses on the couch. She cannot do anything else. Her husband thinks that BECAUSE she was able to do her PAYING job, she should be able to do her household work, too. MG doesn't work that way. We have a certain amount of energy for the day -- when we use it up -- it is gone -- until we get rest -- it "ain't" coming back. Even WHEN we rest, it may not ALL come back. But, PUSHING does NOT work with MG -- it only makes us worse -- in fact, pushing when we are tired can land us IN the hospital -- in something called respiratory crisis -- which means we are on a ventilator. EEEEKKKKKK!! Something we do NOT want!!!

*SIGH* I've written a "book". I'll save the rest for another day.

Saturday, May 23, 2009

A continuation of my journey with Myasthenia Gravis: Because I do NOT have a droopy eyelid, some docs are suspicious of my MG diagnosis. After about a year of care, my case became too complicated for my general neuro -- he sent me to a teaching hospital several hours away. I was assigned to a third year resident -- and at each visit, I saw him AND whatever teaching neurologist he was assigned to during that particular rotation. Well, the FIRST thing that THEY did was MORE bloodwork. They did NOT believe my original AChR test results. OK -- I am not afraid of needles -- I used to give donate blood regularly -- and I gave myself allergy shots in my thighs for years. Guess what?? The blood tests were POSITIVE again!!! Frustration. They wanted me to take steroids. I can't -- I have steroid psychosis -- I become suicidal. They wanted me to take Cellcept -- no way -- I have family members with skin cancer and lymphoma. I got tired of arguing and driving so far.
Someone contacted my sister about an MG/MDA specialist who is only about an hour and a half from me. It took a year to get an appointment -- and after taking one look at me, he wanted MORE bloodwork -- LOL. Ok -- again, POSITIVE. But, this is MY FAVORITE doc. He understands me -- and works with me -- and knows SOOOO much about MG -- and he has a sense of HUMOR -- he is a keeper. I still see my general neuro, too -- I like having a "team".

Friday, May 22, 2009

Just a short post today -- my nieces are visiting -- both are still teenagers -- and they LOVE the computer, so.........
I was thinking about how hard it is to get diagnosed with Myasthenia Gravis. For about two years, I couldn't whistle. It drove me crazy -- couldn't call the dogs or horses -- couldn't "talk" like the birds -- couldn't mimic my favorite tune. My dentist and doc thought that I might have TMJ -- my x-rays showed deterioration of my jaw "joints". It finally got so irritating that my dentist sent me to an oral surgeon who felt of my cheeks and said that the muscle fibers had shortened -- he suspected Scleroderma. I KNEW what that was and I FREAKED. I was given an appointment with a general neuro in couple of months -- in the meantime, I did my own research. When I finally saw the neuro, I told him I "thought" that I might have MG -- he looked sceptical -- I did NOT have the tell-tale signs of a droopy eye OR double vision -- but, he ran the AChR blood tests anyway and set up an MRI. I was VERY lucky -- in a couple of weeks, my blood test came back -- POSITIVE -- and I started Mestinon. Many, many MGers wait for years -- seeing doctor after doctor after doctor -- before they get a diagnosis!!

Thursday, May 21, 2009

Cellcept has gone GENERIC!!! WOO-HOO!!!! So many of our group members take this "wonder" drug -- and, even WITH insurance, the REAL drug co-pay could be pretty expensive. So, quite a few people are celebrating -- and thankful that now they will be able to buy other things -- like FOOD, gas, and maybe pay their utilities. Yeppers, times are hard -- and even harder when you are struggling with an autoimmune -- especially one like Myasthenia Gravis. So many of us are now on disability.

Now for a more "personal" note. My allergies are driving me CRAZY!! We have had so much rain (and I am NOT going to complain -- considering the drought conditions in other areas of the country) -- that EVERYTHING is in FULL bloom and GREEN, GREEN, GREEN. It is pretty much "eye candy". But, my nose, eyes and throat beg to differ. I'm taking my daily generic Claritin AND a Clor-tab. Even then, I'm pretty miserable. Mold counts are HIGH -- and pollen covers the cars. I know that this will pass, soon. The BAD PART is that my allergies KICK my MG into "overdrive" -- arrrggghhh. NOT permanent "overdrive" -- like an exacerbation -- just a temporary worsening of symptoms. I am a glutton for punishment -- the sunshine is so beautimous -- I just CAN'T stay inside -- so, carrying my box of Kleenex, I'm out in the yard, puttering around in the garden, soaking up the sun, etc.

Wasting daylight............more later.

Wednesday, May 20, 2009

It's a new day -- and trust me, that really MEANS something when you have Myasthenia Gravis. Every morning, IF I have gotten ENOUGH (usually 10 to 12 hours) "good" sleep, I wake up feeling stronger -- sometimes, almost "normal". After my first Mestinon has a chance to kick in, I am even better. The early part of the day is when I HAVE to "live my life". I'm like one of those flowers -- as the day goes by, I begin to "wilt". By nightfall, I look and act like I should be in a full-care nursing home. My immediate family has gotten used to this -- but, friends who happen to see me later in the day -- oh my, they are in for a shock.

Gotta go, now -- while my energy is at its peak -- the beautiful sunshine is "calling my name" -- I NEED my vitamin D!!

Tuesday, May 19, 2009

A "New" Day

This blog is currently "under construction" -- that is "shorthand" for: I don't know WHAT in this WORLD I am doing -- so, please bear with me!!

If you want to join our Google group, here is the link: