Monday, December 31, 2007

Beginning the end

I guess there will be all kinds of fancy blogs today ending this year, beginning the new one, 2008. In a way, this day didn't really begin until about 12:00 noon. Yes, Jim, got my breakfast, and my medicine. Ate the oatmeal, but the pills are still waiting. It seems to be easier if I get my throat limbered up before starting to swallowing all those pills. The nurses in the hospital are always amazed at so many of them. THEY are amazed? They should try to swallow them with throat muscles that want to pick and choose when then want to work, and not very good even then. There, for a while when we started the IVIg treatments, the throat muscles didn't want to work at all. Just a sip here, a sip there. The speech therapist, and dietitian worked with me during the first hospitalization to get me to swallowing and breathing.

Woke with a bad head and neck ache, plus the feet were bothered more than usual with the neuropathy. They are not usually noticeable Therefore, I've been sitting here in bed, mostly dozing off in-between the phone ringing and waking me, then dropping off again because the head hurt too bad to try to stay away. Ashley and Christen, the granddaughters, called about noon, and wanted to know if we want to treat for lunch (crazy question to ask of grandparents, huh?). Jim said to tell them "Yes," and he would get us something, too. Finally took the Percocet while he was gone, and now, at 3:00 pm, the head seems quieter as long as I do not turn my head in any direction. Much more, and I'll have to go the lollipop route, but I really do try to stay away from them.

Finally made a decision. Took 0.5 mg of xanax before trying anything else. That often helps the muscles to relax. It is just so hard to tell where the pain(s) come from and to treat them appropriately. I need to take enough, yet not too much. It is comfy sitting cross-wise my bed, leaning with my back against the wall. Doesn't really feel like I am in bed that way, yet I really am in bed. LOL Crazy, crazy. That is how I feel today. Wanted the girls to come back here after getting food. Christen's having a New Year's Eve party tonight, and they are cleaning house for it.

It is hard to type and spell today, so anything is up for grabs. Overlook anything you find. No prizes, though. ;-) This is becoming easier to sit down here and just write. Not real comfortable with it yet, but it is coming along.

Well, I'm going to try to put a picture of Ashton, the newest great-grandson in now, so this is the end, one way or the other. I've got to go and figure out more about how to use this blogger.

hehehehe Ashton's coming down!

Saturday, December 29, 2007

Generally speaking again . . . .

. . . . I am right about my dropping off to sleep while typing interfering with my blogging. Less than an hour ago I was proofing the "Generally speaking" post, then I opened my eyes......... I have not words at this moment to describe how I felt inside. On my laptop monitor it so happily displayed "You have posted successfully" ! Nooooooooooooooo!!!!!! I wasn't finished proofing for errors, spelling, grammar, train of thought, etc And *I* am the one who *NEEDS* to proof! Oh, boy, is this blogging ever humbling me. hahahaha Love it, though, and it's going to get better, smoother. I've got to figure out today about the side bar, and other stuff. Got the Dummies book, and that helped me greatly. Going to see what he says about the Side bar today; also, what about signing up for new page.

You say Blog, Blogger, whatever it is called (Blogger, I think, since it is, has all you need right here. Nice. I do not do my Web searching, learning as good as I used to do. It is the equivalent to Real Life shopping, and unless under the best of circumstances, that is rruuuuuuuuff on me, with RL shopping being the lesser of the two. Jim can take Ashley and me over to Turtle Creek Mall in Jonesboro, and I am only fairly affected the next day; just minimal napping to rest up from it. At least this has been our recent experience since *juicing* up with the IVIgs. But put me under the pressure of seriously shopping or researching, or visiting with people (stress I guess), and I am out for at least two days after wards.

I know one of these days I'm going to look back on these and laugh (at least I hope I do get that much better, and you probably to, too ;-). Oh, gosh, I took the words right out of your mouth, you say? Well, one reason I should expect much better from me is that I've been on the computer, programming, and doing my own, and a bit of others tech work since 1985. I've also taught a bit of software. You might could consider me a nerd. No. No *might* to it. I am a nerd. Or, at least I was until drugs and disease messed with my mind. Today was a first though...... my computer took over completely and posted a blog in my absence! Well, maybe that is not such a bad thing nowadays. Maybe it can do a better job! This Prednisone, and at least Myasthenia Gravis in addition to some of the other diseases I mentioned in the runaway blog have changed my mind these past few years. I hate it! Oops! Not supposed to hate are we? Whatever the appropriate word, that is it for despising MG immensely. I has changed me, made me into a different person. It's awful when you look into the mirror, and do not recognize the person you see.

Anger. Do you detect some anger? I do, so it is time to stop here, and channel it into something useful. What might that be? It is 7:40 a.m., and Jim is not up yet, so I have some time to get started checking out the Dummies book, and *maybe* about more stuff on the web, about blogging. Yesterday I woke feeling great. Had no pain med until late in the morning. Today...... opened my eyes to a headache, *but* not a screaming one, and that is something for which to be thankful. Means the side effects are slacking off some. I asked Jim last night when the next hospitalization was due. He told me. I have forgotten already. I need to add some software today, and hope my mind is feeling up to it. The headaches do not like do to that kind of computer work, but I *LOVE* it!! The doctors want me to do a sleep study to see if they can find out what exactly is making me sleep like this. As if I don't have enough going on already! But, maybe if I could stay awake, I could get more quality of life than this of confined to bed, and not accomplishing anything because I fall asleep and my computer takes over. Has anyone else experienced this? Let me know if yous have.

So, now I will go and proof this, and put my name to it. No sig, *I* didn't post this!!! Are you supposed to do that like you in emails? Guess I need to keep searching and reading. Wish I knew where to go for blogging etiquette.

Okay, that's it now.



Striving for a world without Myasthenia Gravis

Friday, December 28, 2007

Generally speaking . . . .

. . . . I was right ~ it is hard!

Yep. This is proving to be as hard to do as I anticipated. In additi on to finding it difficult to do a diary, log, whatever you want to call it, where I am talking about my day, how I feel, what all is happening, and how MG is affecting me, my body just does not cooperate with my mind, ideas, goals, etc. My mind is all organized with thoughts and plans...... excitement! I'll be sitting here just working away, and the next thing I know........ oh, golly gee! Look at that clock!! It has sprouted automation (wings ?), taken off, and whizzed on away by several hours. WHERE did that time go? I was not sleepy. That was not the problem. I'm still sitting up rimrod straight, mouse still in my hand, head drooping...... oooooh, even one of the babies (furry kind) have jumped up on my bed with me; that did not even wake me. This happens so frequently, and it seems so irrational because there *seems* to be no explanation for it. Another MG feature….. explanations not necessarily available. What was that I said the other day about time? Getting used to talking about myself is going to take some time getting used to doing, also, especially when I have to say I feel bad or hurt.

*This* is Myasthenia Gravis

First a very good site I found just a couple of days ago indirectly a result of my blog, and I want to share it with you because she does such an excellent job of explaining Myasthenia Gravis, better than I can do without out and out copying or plagiarizing! It is Connies Corner ~ Myasthenia Gravis So very unpredictable, in soooo many different ways. Fine one moment, MG symptoms the next, in varying degrees ranging as far apart as from the North to South poles, often with no seemingly rhyme or reason. Each of us is different. We’ve been likened to snowflakes. ;-) Just about as fragile as one, too. *s* (Could I but walk, I’d like to see me, delicately fragile, dancing through the air like a falling snowflake…… oh, how dainty this 65 year old woman ;-) LOL Stress, above all things, then infection can, and will bring on an episode that might last for days to months (especially did so for me last February following an upper respiratory infection). How would you like to live with someone who might have a myasthenia crisis, landing them in ICU, dependent on a machine to breathe for them in just a matter of few minutes? THAT is the pressure of an MG caretaker. Mine is my husband Jim. Twenty-four hours a day. I am totally dependent upon him; he is totally responsible for me. He is 68, I am 65. A subject for later. He is special. I am fortunate. We are one.

So, what about me?

I've really not given you too many specifics. *Not* because I haven't wanted to, but because I keep falling asleep, or I have been too exhausted..... not tired..... exhausted. I slept many hours in the hospital with my computer on my lap where I had fallen asleep while trying to be so diligent about this endeavor. As you see, I didn’t get very far. I honestly thought that once I started, that my enthusiasm would override whatever it is that sends me off to that land of a beautiful sleep that, once there, I do not want to leave it as I awaken. Didn’t happen. 

I have Generalized Myasthenia Gravis, meaning my voluntary muscles, those controlled by nerve impulses that arise in the brain are involved..... arms, legs, breathing. In addition to these muscles, there is also ocular involvement or Ptosis. My facial muscles are involved. I think they have been helped with this last IVIg treatment. Can we count this as one step accomplished on the Road to Remission? My eyes and mouth move much better than they have in several years. It's wonderful to smile, grin, laugh, and know it is not only within, but is showing outwardly. I'd been going for years not knowing that I looked like a flat faced grouch! Had a frozen face. I'm driving Jim crazy now acting silly rolling my eyes around, all kinds of ways, and rather quickly I might add. [ Clapping ], and cannot wait to show the doctors next time, as *that* is the one thing they check over and over LOL Doesn't sound like much to you, but until now, not only was the lid movement limited, but the eye movement as well was severely limited.

It is not all Myasthenia Gravis

Everything I am dealing with is not Myasthenia Gravis. I also have lupus, Multiple Connective Tissue Disease, rheumatoid arthritis, Cushing’s syndrome, Sjogren’s syndrome, hypothyroidism, mitral valve prolapse with tachycardia, diabetes (using insulin pump), severe diabetic polyneuropathy (combined with the MG is what keeps me from walking), osteoporosis, and glaucoma. I also have to take a large daily dose of Prednisone, and while it is one of the best drugs for MG, it *does* plays havoc with my body with all of its side effects, and I have been on it for some degree since the early 90s. I don’t know why, but I envision my body as bread dough in a mixing bowl, and the beater constantly kneading it (you know, that hook-like creature slowly turning the dough (I didn’t have a bread machine….. just used my hands and the floured counter-top to knead – that was about 25 to 30 years ago ;-)). Side effects from this drug and others give me almost as much to cope with as the disease itself, but it is necessary for me to have the drugs to live. Live. My Life. Exactly of what does my life consist? I *lounge* in a hospital bed in my living room. Blew my home decorating with my new custom made living room suit to bits! LOL!!

The *eyes* have it!

Oh, yes, they do! A drooping of one or both eyelids, Ptosis, blurred or double vision Diplopia
due to weakness of the muscles that control eye movements. An avid reader, I had to put my reading on the back burner a couple of years ago. But I taped my eyelids open when I just couldn't stand it any longer and had to read a book. Funnieeeeeee!!!! Or….. I'd tape the right eye shut, and just hold the left eye open with my left hand. Read several books that way. I have monovision with the near vision in my left eye, so that worked pretty good, until my left arm became more affected by the MG, and would get tired of holding my eye open. !). hehehe One of my doctors I have during my IVIg treatments thought I was so funny, and mimicked me to his nurse practitioner. I went to my neurologist's appointment one time with my eyes taped open for him to see what I had to do to be able to see even half way good. After a while, the eye lids get a bit sore, though, if you're not careful and use the right kind of tape.

This was most likely from the over, and misuse of the arm (the left arm was also the last of the muscle groups to go, the right one having been affected several years before as I could hardly write more than a few letters, meaning I needed someone to sign checks and receipts for me, playing the piano was out because of my arms and my weak back muscles resulting in an “on a scale from 1 to 10” pain level being upper moderate, and then weakness of the arms for a couple of days. I had to get an electric toothbrush, no combing my hair beyond a few strokes, and I was prone to drop everything.

FOR TRADE: Two legs

The peripheral neuropathy most likely came before the MG, because I had abnormal Nerve conduction study and Electromyography (emg) tests years before knowingly being aware of any sign(s) of MG. I guess the first symptoms were an inability to stand for more than a few minutes, and a sudden change in my ability to climb stairs. I went from being able to take them two at a time, to having to crawl up them on my hands and knees in a short period of time. As time went by, the amount of time I was able to stand became less and less. For instance, getting something from the refrigerator became a very painful chore! Now, when getting your food becomes a chore, you have problems!!! LOL In that case, not only is it the standing, but it is also the use of the arms to reach inside the refrigerator to get the item which puts a strain on the back, whereas with a normally working person, all the nerves, receptors, etc., would work together, and you’d never know of any one of them working separately

I first started out with a cane for balance when I walked, and then a manual wheel chair. As my arms grew weaker and weaker, and I was unable to propel myself, requiring someone to be there to push me at all times, we applied for, and were approved for an automated chair. One word. Freedom! I’m sure it wasn’t, but it seemed like it was the best thing that ever happened to Jim and me. Finally, we could be apart. I didn’t have to have him right there every moment as I shopped, and he didn’t have to push the wheel chair every turn of the wheel. I had no idea I would come to need the chair as much as I do, for I can walk only a few steps now, and can stand no longer than a minute or two before my legs start yelling out, “Enough!” After a few of the IVIg treatments my leg strength has been stronger, but it is temporary.

I do not understand everything, but I do know some have found remission. They have, at one time been on the respirator, and are today, functioning normally, most still taking some form of medication, usually Mestinon, but *that* would be fine with me to just be taking Mestinon and being able to lead a near normal life. At least up, walking around, not needing the wheel chair! THAT is my Road to Remission. How far will I make it down that road? No way to know. I just have to take it one day at a time, one step at a time, and here I am doing just that, with an invitation to anyone who wants to join in the walk.

I get discouraged. Yesterday (the 26th) was a bad day. I was so depressed. This Christmas was so totally unlike any Christmas I have ever had in my 65 years. It was so lonely. Well, phooey, here come the tears again. Thought they were finished. Jim was so sweet yesterday. He was very in tune with my feelings over the past week or more. Even gave me my Christmas present early because he felt it would do me some good. It did. I’d cry a while, then we’d laugh a while. But I do think my anti-depressant needs some changes. What? I do not know, but I know something’s gotta give. I’m due to go back to the doctor on the 7th, and I’ll be sure that is one of the things we discuss. I’ve been telling them how depressed I feel, but they don’t think so.

I brought it up, but did not elaborate, about Jim giving me a Christmas present. He brought a WOW to my mouth, and a smile to my now loosened facial muscles to express how I felt inside. First a diamond necklace that looks like a treble cleft sign (I'm the pianist who can't play anymore). Beautiful. Then a necklace that had been my mother’s, but needed a chain. He got that all restored for me. Heartwarming. And then, a diamond ring, all of his being. Loving. You have to know Jim, and his gift buying, giving. *This* was a big deal for him! Not any monetary value, but his gesture, and ……… well, just everything. It didn’t have anything really to do with Christmas exactly, except the timing. He did it for me. He did it because of his love for me. He saw me hurting over the past few weeks, maybe months, and he did it to try to bring a bit of brightness, bit of sunshine in my life. It did! That is why he gave it to me a day early. And thanks to the IVIg, *s* I had facial muscles that responded to the love and joy and happiness I felt inside for him.

Monday, December 24, 2007

Hippity Hop

Now you are getting a taste of what it is going to be like, trying to do a blog encumbered with, and strolling along with MG.

I'm a very organized, methodical person, and MG with its medications leads the very best laid plans of we mice and (wo)men astray. Having to move every few years with the Air Force had much to do with my development, because I was not this way before then..... noooo, not messy me....ummm...... I've got to think about that some more because that is causing me to recall things about myself that I had forgotten. [Note to self: Take time to think about if I was organized and methodical before I married and left home.] There is a way to do it, though, and I'll find that way eventually. Mercy! If this had been the biggest problem I ever embraced, how wonderfully easy this life would have been!

Anyway.......... I have a LOT of trouble keeping a thought going, staying on tract, even broadly. English was my strong suit and now I cannot even remember words, much less how to spell them, and grammar often slips out the back door nowadays. There is no use denying it. I will have to be right out front and honest about my swings. When I cannot remember, I will have to say so. When my body fails to work, I have to say so. Many a-time we have had to cancel doctor appointments (all are two hours away) as I would be in the process of dressing because just that much activity and/or stress would bring on the MG symptoms, and I'd be weak as a ragdoll, and flat in bed. Trust me. We'll get all this ironed out. Right now we've got the holidays upon us, I am post IVIg with bad side effects. The road is just a bit bumpy right now, just as I warned it would. I have a great partner who is with me for the long haul, remission or not. We've been together for 45 years.

Here we were, keeping tract of the IVIg in the hospital, and the next thing you know I am at home and what? Simplify. It may take me a while to learn that. WOW!!! Wonder if I had learned that a long time ago. Simplify things. Then you think about the things that would not have been learned by being such a stickler for details. Well, we'll see if we cannot combine the two maybe. I'll sure try..... that's for sure!

I got sprung from the hospital a little sooner than expected. That's not so bad. Made us have to make a few changes that day..... hmmmm..... what day was that..... oh, Tuesday. OH, yes, Tuesday! The day we put our son through the wringer! Helped him put 600 miles not only on his truck, but his body as well.

Jim had an out-patient procedure, and son Jim drove from Senatobia, MS, to Blytheville, AR, to get him, take him to Memphis for the procedure, then they came to the hospital where I was........ son Jim left Jim at the hospital with me for us to get me packed while he drove back to Blytheville to get the expedition to bring it back to Memphis to carry the two of us home (we need it to carry the wheel chair), and t - h - e - n drive his own truck home to Senatobia...... f i n a l l y ! ! !

The post IVIg time here at home has been equal to the time I've usually spent in the hospital, especially to include the headaches. The headaches. When they started, I described them to the doctors as a bomb going off on the left side of my head just above my ear, encompassing an area about the size of my hand, grasping my head, and my eyes going as wide as possible. The first one came at 3:00 a.m. out of a sound sleep, and led to requiring IV pain medication. They were bad. All of a sudden one would come from no where, any where. These are side effects of the IVIg.

So, this time I get to go through that experience here at home, only, true to form, they have been different. They feel like missiles exploding out through my head. It is the most excruciating pain I have experienced, and - bless my pain doctor's sweet heart - lollipops are on hand to counter the attack. I have had my blog ideas and plans, but have had a mite hard time staying awake to get my thoughts written and posted. But...... this is this is just the way it is in my world. Those sound like some sleepy-time thoughts for another time.

Right now, it is Christmas Eve. Time to turn thoughts towards Christmas. See you later.


Myasthenia Gravis - where's my vision this morning?

It is 5:30 a.m. I've had my morning 60 mg of pyridostigmine thirty minutes ago. I should be able to see by now. But I can't. Hey, it's Christmas Eve so the green font. I'm a graphic artist so there is no telling what I'm liable to come up with. Won't be much without vision. I have been sitting here working on a photo of Ashton and me, and there is a limit as to what you can do if you cannot see clearly. Is the blur on purpose, or is it because of the Ptosis.

My ophthalmologist says I will not go blind with MG, but what good does 20/20 vision do you if you cannot open your eyes enough to see through them. Usually my vision, read that muscle control, is better following an IVIg treatment, but it has not been so thus far with this one. My neurologist says it takes time. It's always give it time. Time. Time. I've been giving this disease time long enough unknowingly. Now I have to give the IVIg time to do its thing. Time. Time. It is even Time on the Road to Remission. We experiment here, there, whatever. But I have to believe. In the midst of it all is Hope and Belief. Without those there would be no use even trying.

Thursday, December 20, 2007

Moving around in my world

I first started to entitle this “Moving ‘Up’ in the World” but then I realized I wasn’t so sure that is actually what happened. My nurse in the ER when I was admitted was really nice. She only had to stick me once to get my IV started. Not bad since my very good veins of the past had begun rebelling at being punctured recently. I am for certain I’ve even heard them give a yell a time or two. Not bad for someone hard of hearing. Hmmmm maybe we can hear on the inside. You reckon? Can’t you just see it…… there are those tiny little ears with arms and legs running around all inside, listening to the sounds being made by our insides: our organs, muscles, arteries, veins, and yes, even our nerves! Yikes! They’ve heard my veins pleas of mercy, and have given them the advice to just close up and shut down. Then here comes this good nurse in the ER, and she has great success at getting through one and is able to get that IV started against all odds.

Right at 5:00 p.m. on the dot the gamma globulin of thousands of blood donors began flowing through my veins, replacing my bad with their good. They do not know the “why” it works; only that it works. Usually. There is so much about the autoimmune system that is unknown. Much research is still needed. Now that my Ptosis (remember that involves your eyes) has improved, and I can now read ‘better’), I am able to do more reading research papers, and throughout time I will share things I learn, here with you. I told one of my doctors today what I am doing, and she was pleased, saying that someone down the road will be helped because of what I am doing. That would be nice if my *talking* could help some one. I do not mean that to be taken lightly either. When I was a teenager, my pastor used to have to just call me down in church for talking and laughing……. I mean call me out loud me by name! By that time, I would have gotten all the others tickled, and no one could stop laughing. Later, in my young adult-hood, would you believe I worked with teenagers. Personally, I think I identified with them; did I unwittingly still want to be one??? ;) I think maybe today I *still* identify with them. Granddaughter Ashley asked me if anyone ever told me to grow up, and when I told her “no,” she said “don’t let them; I like you just the way you are.” Granddaughter Christen (just turned 13) just raised her eyes, and shook her head, all the while using my laptop to do her Christmas shopping.

It is time for more surprises. About 10:00 p.m. they stick their head through the curtain of my cell, uh, uh, cubicle, and tell me they have a room for me!!! No! I really am not going to have to spend the night down here this time after all! Beautiful! Wonderful! Stupendous! In my wheel chair, all tethered to the IV pole, my feet guiding the wheels, a nurse helping with my “stuff” on the bed… huff, huff, huff…. off I go to the third floor…. *my floor*!

Sure enough, it was good to see those working that I have know from previous visits. They were swamped, so and again I was just plopped down. That’s all right. Later on when I needed something, I just jingled the little bell beside my bed. My nervousness began to subside; comfort eased in with me. That is a good partner to have.

Striving for a World Without Myasthenia Gravis

Sunday, December 16, 2007

Off to the hospital we go

Will I ever stop being the eternal optimist? Why do I always think things will go okay, smoothly regardless of how they have been previously?

The day began so well. Only had minimal packing to do to be ready to go. Surprise! Surprise! We were on the road a little after 9:00..... Earliest blast off time ever, and not a cross word between. Still feeling uptight, and nervous.

Blytheville to Memphis, St. Francis Hospital, Bartlett, with a swing through McDonald’s for an Egg ‘n Cheese McGriddle. I was still hungry after my breakfast of cream of wheat, and knew it would be a while before being able to get something to eat. Nervous hunger?

We got to the hospital about 11:15. Gave my chair its full 6 mph to get in out of the snippity, snappity wind. Ohhhh. The cold hurts so badly. Have to get out the winter protectants (new word?) when I get back home. I always wondered why, in the movies, people in wheel chairs had blankets over their laps. Shoot! Your legs and knees get cold! Very cold! Then I have to wrap up my neck and face as much as I can, especially the nose. Then go Brrrrrrr all the way. LOL

Anyway, we strolled into the ER to check in, and got no surprises. “Oh,, where oh, where have my doctor’s orders’ gone, Oh, where of where can they be? They were faxed over here, the day before, Oh, where, oh, where could they be?” Okay, that’s enough. Again. What do they do with the orders when the office faxes them over. Invariably they are found, however, this time Dr. Saeed’s office had to fax them over here again. After signing all the papers, Jim came back to tell me they were going to admit me to the ER holding room until there was a available for me. Lovely. Again. They want me here, but have no room for me. They are nice in there, it is just a big pain in the neck (pun intended ;) to feel manipulated by them. This means getting started earlier, which is what I wanted anyway.

After getting to my cell, uh, holding cell, in the ER, Jim goes to get my stuff to bring in so I can change into my jimmies. Then giving his approval to my new ones, he takes off to eat at TGI Fridays, then on home to our babies, Callie, Missie, Anna Kay, and Precious whom I will miss immensely. They are our four cats who do not know they are cats.

I’ve been dumped, and am in bed with my laptop so this seems a good place to stop for now. Stick with me one doing this. It is a learning system for me, and I don’t know what to say and what not to say. Much happens quickly, and I *do* fall asleep often while I’m typing, and lag behind my schedule. Helpful suggestions are welcomed. On my “Life Goes On, One Step at a Time…” thought, this is a part of it….. starting this blog is just another new step I am undertaking, and I associate myself with others who are experienced and on the ball.

Striving for a World Withouth Myasthenis Gravis

Thursday, December 13, 2007

Doctors and Hospitals Rule

Finally got that first one posted! How exciting! I think I learned a thing or two so that it will not be that difficult from now on. Now on to this morning's news.

This is the world of the living at the whim of doctors and hospitals and with chronic diseases.

We just received a call from the neurologist's office, telling us that I am to go to the hospital tomorrow morning, Friday, to begin my IVIg treatment. *IF* all goes well, I should be back home by mid-week.

There will be four infusion bags spread over four days. It is the side effects that we wrestle with, and this time we plan to try administering it differently. In addition to the four days (it has been three days previously), we plan to slow the drip to 40 cc/hr whereas the last time I could not take it the least bit higher than 50 cc/hr when my head would begin to feel like a cannon going off inside of it. Once they start, it takes at least a couple of weeks before they subside.

It seems harder for me to get about to finish getting ready to go. It is not a nervous feeling I have, but I am not comfortable either. There for so long I was running back and forth so frequently I didn't have time to get settled in at home. Now I've been here for two months, and I do not want to leave, yet I am so anxious to get the treatment going. I will feel SO much better afterwards I will get all perked up when I get back to my floor at the hospital, too. They are really a swell bunch of nursing staff.

I take my laptop to the hospital with me, and will be writing and posting from there. How much my meds keep me knocked out will determine how much I get to write. I am also working on a page at CaringBridge in conjunction with the Myasthenia Gravis Foundation of America. Hopefully, I'll be able to get on with that since I finally figured things out here.

That's it! I have put it off as long as I can. I am just rambling now to keep myself from having to get started on completing my packing.

'Ragdoll' Billie

Wednesday, December 12, 2007

Welcome to My World

Now what do I do? Just where do I start? Usually the beginning is a very good place to start, but as I search, I’m just not sure where that is.

Got it all done, and now cannot get it published. Oh me, oh my. Simplify. That's what I need to do. Simplify. Let's try that

Myasthenia Gravis. It is for sure we cannot go much further until you, too, know what it is, how it affects me, and what in the world is it doing here? This blog is supposed to be about recalling and telling of events throughout the past sixty-five years of my life that I want to pass along, day one to the current day. Sometimes day one is clearer than today. MG is a rare, incurable, autoimmune, neuromuscular disease. It can affect any voluntary muscle of the body, at any time, to any degree, in all races, both genders, and at any age…… hmmm alive, you are eligible. *s* Common symptoms can include: Drooping eyelid(s) ( Ptosis ), double vision ( Diplopia ) and/or blurred vision, slurred speech, difficulty chewing and swallowing ( Dysphagia ), weakness in the arms and legs, chronic muscle fatigue, difficulty breathing.

One of the treatments for MG is the IVIg. Intravenous gamma globulin coming anywhere from 1,000 (FDA requirement) to 10,000 blood donors. I have been receiving a treatment every four weeks until this upcoming treatment which will have been two months, and I am more than ready to get that drip started this Saturday, December 15th. A treatment consists of an infusion for a period of three days in the hospital. Now, this is my treatment plan; it is different for MG patient. The last time we talked to the neurologist he said he thought he was going to stretch it out to four days, and at a slower drip rate because of the side effects.

This blog is to involve you in my daily journey toward reaching for remission of my Myasthenia Gravis. Friends. It is 1:30 a.m. and as I was reading through this, it dawned on me that is what I am looking for…….. friends to go along with me, talk with me, listen to me, just whatever. This is a crazy disease, changing as frequently as within an hour, especially within a day. Two good days in succession can be reason to rejoice! I found a forum in the UK, but though it feeds me with knowledge, I find I need people to just talk to. I am nervous about “telling it all” to you, but I am determined to try. The good is easy. The bad, no, for I don’t think anyone wants to hear my “complaints”. This will be facts, and my interpretation of things happening with me as they relate to MG. One thing I am afraid of doing, and that is talking too much! This is my world at the moment, and it is different from most other’s world (don’t we each have our own world? :). Myasthenia affects approximately 20/100,000 people, all to varying degrees. I have no one to talk to; my laptop is my contact with the outside world, so when I have an audience I tend to become a blabber mouth. At least you can click on the little red “x” and shut me up if you get tired of hearing me. LOL I *do* hope you will hang around, though, and as I move along day to day, I hope you learn more and more about this hideous disease. We need people to learn about it, and we need a cure! Goodness, we could even use some more medicines developed for MG When I started going to the hospital for the IVIg treatments even the nurses were not familiar with it, and not very familiar with the IVIg treatment itself. I invite you to ask questions. What I do not know, I will go looking for the answers. Next week I will be in the hospital so I can ask my doctors whatever is needed.

I am in a hospital bed at home, and use a wheelchair when I go out. Extreme fatigue and weakness are a major part of MG; sleep is an excellent medicine for it. Therefore, I sleep a lot, much more than I like because I am used to being a very active person, and feel sleeping a lot is a waste of time. I see so much around me that I would love to be doing. It is only recently that I have regained my ability to type.

The use of the affected muscles causes them to weaken, in some cases to non-use. My eyes are most notably affected when I am fatigued, the muscles unable to hold the eyelids open enough to see clearly. I have 20/20 vision, but the lids partially cover my pupil, making what I can see appear very hazy. Sometimes I tape my lids up to be able to read my computer or a book. This is improving with the IVIg treatments, though, and one way I can tell I am definitely ready for my next treatment. THIS is my road to remission! It is what I am going to be sharing here, hopefully every day. Occasionally MG knocks me low and out for a day, but once I get the blog going, I *think* I can add at least a note each day, but one thing I have learned since having this disease is not to make promises. We often have had to cancel doctor appointments just hours before because I would not be able to get out of bed to dress and make the trip.

This disease involves my husband Jim 24 hours a day. He only leaves the house for short errands. I’m not supposed to be up and about without someone here because of my tendency to fall. Sometimes he must actually hold me as I walk; other times I can hold on to things as I walk along, but I cannot walk unassisted by some means. Overall, since my last IVIg I think my ability to walk alone has improved. This also means that Jim must do all the cooking and washing. The cooking has been a real challenge for him since I am also diabetic, and we must count carbohydrates because I use an insulin pump. That means that some of the things we were used to eating – nope, no more. Things that are quick and easy – nope, usually. Labels, labels, labels. He has learned to read labels! I try to give him ideas from my bed, but you know, that can sound like butting in, being bossy sometimes. The kitchen had been my domain for forty years, and it has been a hard thing to give up.

There has been much I have had to give up, making a true 180 degree turn in areas of my life, and it has not been the easiest thing to do. Jim thinks I've been in denial of the disease, and am just now facing reality. Whatever it is, I need to form a friendship, support base because I want to fight this into REMISSION, and I guess what I'm needing is a cheering squad. And, yes, I really *am* going to be telling my stories of the past (present, too). Once established, maybe breaking into separate blogs, but for now, this will have to be the way. I *plan* on posting more than once a day. However, with Myasthenia Gravis, it is difficult to make solid plans. Prior to diagnosis this was a real problem, but now that we know to expect the unexpected, it has helped us relax more. Stress is one of the top reasons to bring on an MG episode! Any kind of stress, especially that of talking to people, sometimes even talking over the internet can stress me out, and I have to take a break, a nap for restoration.

Now you know a little bit about me I am having trouble saving this to post it, so whenever I am successful this first post will appear! Finally!

See you later..... hopefully! ;-)

'Ragdoll' Billie