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!!!