Saturday, April 5, 2008

Living with Myasthenia Gravis

Life, love, and some laughter have been taking precedence here lately (Oscar traveling incognito, for instance). The main purpose of my blog is Myasthenia Gravis awareness. There is the dual purpose of it for recalling life's stories of the past for my children and grandchildren which was the original purpose, but meaning to bring the MG to the forefront with a near-daily accounting of *My Myasthenia* especially as I undergo IVIG treatments regularly. I am a little bit different from the average, or normal (no such thing) myasthenic (this is what they tell me ;) due to all the other diseases with which I have. Addressing *My* Myasthenia does not mean a medical accounting day-by-day necessarily, for MG touches nearly every aspect of my life, and most of that has been a 180 degree turn around for me. So my coping with life''s usual experiences is dealing with MG.

Recapping events involved with trips to the doctors in Memphis, you know those 1-55 *flat as far as the eye can see* trips, is dealing with my MG, but they are comprised of other aspects as well, the difficulty and stress of getting up, dressing to go, getting in/out of the Expedition, the tedious but also fun part of deciding where to eat, and then the fun associated with that, say like Brittany and Jessica or Keith at Abuelo's. When I go into Outback Steakhouse or any other restaurant, it is no different than when you go in (that *I* know of), but there really is.

Every moment I am in there I am dealing with MG. The obvious, my being in the wheel chair does not bother me. It is choosing what to eat, and then the eating and drinking that are my bigger challenges. Chewing my food weakens and wears down the muscles that control my mouth, rendering it useless. With weakened muscles - this happens relatively quickly - aspiration with or without choking becomes a risk. My speech also becomes affected, and that can be very embarrassing. I do not have these things consciously on my mind as I join you in a restaurant, I am just using this as an example of how MG fits into the coping with my daily life. This is why I write about the *normal* things of life here as *living with* and *coping with* MG. Side by side, except for my sitting in Oscar, we look no different (yeah, well, you know what I mean ;). I do not look sick; I am missing no limbs. There just is no outward appearance anything at all is wrong with me. I am not the only one, of course.

Naturally some days are more MG focused than others simply by the nature of the disease than if for no other reason. Good days followed by really bad days where I can hardly do anything but sleep. I really have neglected the specifics of the disease, especially my medications, what they are for, and how they are all a mixture to help me gain control or remission of *My Myasthenia*. The *inside* of me has been having so much fun that I have forgotten to explain the *body* part, and I really do need to do that because it is all going on, too, and other myasthenics are unable to see the two living together side by side. For instance, it is very easy to choose something really fun to talk about today because *inside* I feel so good. The scalawags do not take precedent though. I don't tell that I have had to go all the way to a lolly during the day which I try to avoid because I can have only one lolly per day, and I do not like to start the night without that one being available in the event of a bad scalawag. The way I have been writing, there is no way another myasthenic would know I am still dealing with my IVIG side effect, and that is defeating my purpose. It is hard to find the line on which to walk here. **Laugh*** Okay, let's be honest. Today I have been battling, and still am, a really, really bad scalawag (new readers, these are IVIG side effect headaches that are unlike anything I have ever experienced, and I have been a lont-time migraine sufferer in the past). Usually, after I take something for the pain, first a percocet then if it is still persists, a lollipop, I will nap for a short while - no choice, I'm a goner - then I will be back here. The unchained naps are what put me behind on my writing. I can say this, though, since blogging I am sleeping less and less. I have so much more on my mind propelling me from moment to moment, and the more interaction I have here, the better it is for me. I am slow to respond to comments, yes, but they really do inspire me to keep on going each day, which is hard to do some days when lying in this bed just seems so futile. To those who leave comments, you have no idea how much you help me cope with this disease. :::wrinkled nose::: It's yucky! *smile*

With the events surrounding my last IVIG treatment, I think it is prudent to look at how I approach my healthcare. The primary word today is Proactive. Lying here beside me are the results of my lab work done at my appointment with Dr. Franklin Tuesday. On it are notations where the results are outside normal limits, or sometimes that the abnormal readings are okay considering my medications or illnesses. But I am kept informed nonetheless every time.

I do lots of Internet search and research about all the diseases I have, and their interactions with each other, doing the same with the vast medications I take. Whenever I find something that strikes me as significant to question, I make a note, or I print it out and take it to my appointment with my doctor(s) for their judgment. We discuss it. Many times my doctors are ahead of me, and have already checked out the point I have addressed. Other times it is something for us to talk about, maybe something to consider. This is what the basis of my medical *team* is all about. Team work, and that team includes ME! I have found it promotes trust with each other. The first words Jim and speak coming from an appointment is either, "That was a good appointment," or a comment stating what we felt was missing or wrong with it. The one we had with Dr. Franklin the other day sent me home feeling really good about how he feels about me as a patient. I liked the way he responded to my last treatment. He made me feel like I was *his* patient. Kind of a reassurance, I guess. I don't know. I don't feel like I am expressing just what I am feeling exactly. I guess you would say it got his "dander up" and went on to give Jim some advice. Anyway. *smile* It's just nice to know that you have a doctor who cares so much.

Okay, to close out, more *fun* pictures from *coping with *My Myasthenia* when we got something to eat following my doctor's appointment last Friday.


Jim reading the menu
We both love guacamole!
Striving for a world without Myasthenia Gravis


Garyc said...

I also have MG. I went through 12 IVIG's without much help. Of course I am on Mestinon. Since I have resisted prednisone, my neuro put me on azathiaprine(Imuran) and it has been a great help with my overall strength. Now if I can just get my blog to show up on a google search. garyc

Anonymous said...

If anyone is looking to hear what a 12 year old boy with MG has to say about having MG and Asperger Syndrome, go to and listen to the free podcast put out by Midnight In Chicago entitled "Special Feature Interview with Douglas Giesel and An Update Interview with Lewis Schofield."

tasha said...

I was diagnosed with MG last April. Since then, things have been, let's just say different. I have been hospitalized every 3 to 6 wks since then for Ivig treatments. I'm currently on mestinon, imuran, and prednisone. I'm always weak, depressed, and often have horrible stomach pains. Can anybody offer me any advice, or hope?

Ragdoll Billie said...

Tasha, I get an IVIG for 5 days every 4 weeks, and I get horrendous headaches. They are described here in my blog. This is why I am doing my life with MG and treatments before the world. There just is NOT enough people talking us and our lives. I do not walk, but the why I do not walk is still being determined. I am having back surgery Thursday for a ruptured disc, but I was not walking before the disc problem. So, we will see along the way. I also have ptosis. Do you have eye problems, too?

WEAKNESS? Oh, you betcha!! DEPRESSION: From the Prednisone.
STOMACH PAINS: Mestinon. These are only *possible* reasons. Please talk to your doctor. These are only the first things an MGer will possibly think of, and what they have said to me. I am NOT a doctor. I take prednisone and mestinone, and keep the immodium close at hand. LOL

HOPE Reduction of symptoms is my
HOPE . It is an incurable illness, so it is all semantics as to what call it. I call it my "Road to Remission" and some say there is no *remission*. Whatever. I just want to get better, and I know you do too.

Stay close. It helps me to have someone that feels like I do, and it sure sounds like you do.

Ragdoll Billie on the Road to Remission