One Facet of MG

One thing about MG:  you take a lot of medication.  A LOT.  So I thought I'd show you all what I have to do once a week.  And every. single. time. I have to do it, I want to throw it all out the window.

  These are all the bottles and boxes I need to fill my gigantic, four-times-a-day pill box.

The full box.  It's something like 42 pills a day at last count.

Trach cleaning supplies.

 Then, morning and night, I have to clean my trach.  I have to use a tiny bit of Hydrogen peroxide (some, but not TOO much or I get like burns around the stoma.  But I have to use SOME, or it gets infected really easily.)  and distilled water, I put that in the little plastic cup, and then use Q-tips to clean around and inside my trach.  I've had the trach just over 12 years, so I've cleaned it nearly 9000 times.  Probably more if you add in extra times for when I had to change it, or after surgery and I do it more often.  Between filling my pills (only once a week) and then cleaning my trach, it takes about 40 minutes.  How fun!

Just one aspect of what it's really like to live with this disease.  It's a lot.

Chronic Illness Upon Chronic Illness Upon....

photo by disboomer.com

Okay.  I'm tired, and horribly, monstrously, hideously a little cranky.  It started when I had to take my morning pills.  All 16 of them.  Which got me to thinking about all the crap that comes along with having Myasthenia Gravis.  Like diabetes.  I have diabetes because of the HUGE amount of steroids I've been on to keep me alive.

Moving on to lunch-ish pills:  Another 8.  Dinner and bedtime:  11 more.  So, for those of you without calculators, that's a grand total of 35 pills a day, and that's not including my insulin.  So that's 245 pills a week to keep me going.  I fill my ginormous pill box once a week, and I dole out 245 pills.

Do you know how sickening that is? No pun intended.  At least once a month I contemplate just throwing the whole damn thing away and letting nature take it's course.  Seriously. I mean, without modern medicine I wouldn't be alive.  So how far do I push it?

Now don't get me wrong, I'm not like, all into Obama-care where you stop getting medication when you're 70 because you're old and useless by then, and have taxed the system enough with your sorry self (can ya tell I'm a fan???), but I'm just asking MYSELF the question:  How much do I do?

Right now, the answer has to be "As much as I can."  I have a child.  I don't want him growing up without a Mommy.  Sometimes, to be frank (and ernest!) it just plain SUCKS.  I take Calcium and large quantities of Vitamin D to prevent further bone loss.  I take anti-depressants and anti-anxiety meds (well, I needed the anti-depressants before MG, that's just a chemical thing)...because I'm so stressed out all the time and have to subject myself to all these treatments and tests and appointments...

I take stomach medication so I don't get ulcers from all the other medication I have to take.  I take a medication that people that have organ transplants take (so they won't reject their new organ) to suppress my immune system.  It could kill me.  But if I didn't take it, along with the plasmapheresis, I would die.  NO I am not kidding, or being facetious or exaggerating.  I. Would. Die.

It all gets so exhausting sometimes.  Honestly.  Sometimes I just want to rest.

Update On Medicine and Stuff

Well, I have slept for FOUR nights in a row, at least 6 hours. Woot! Woot!

This disease is very puzzling however. My arms are weaker than they have been in YEARS. I still don't really have much stamina or energy. My breathing is much better, which is FANTASTIC, and obviously sleeping helps! : ) My emotional state is MUCH improved, so even though I'm not as strong as I want to be, I'm not like borderline suicidal. Which is always a good thing.

It's just crazy...I don't really know if the cyclosporine is helping, and the side effects are crappy... (charley horses being the worst). So what to do?? Another cool thing is that I haven't have pheresis in almost 6 weeks, and I haven't gotten any worse, so that's awesome.

I have to get blood work done tomorrow morning for the cyclosporine levels, so I guess we'll see then if it's measurable in my blood, and it if IS, if it's worth continuing. Although we've spent so much stinkin' money on it....

I've also just started sneezing my fool head off, and blowing my nose every 2 or 3 minutes. I'm PRAYING it's just a ridiculous allergy attack! Well, I guess that's it for now....we'll see what the blood test says and go from there.