Monday, January 21, 2008

I found out one thing......

I like being right here at *least* once a day, and free to be here at *any time* I please.

Another thing that pleases me (as much sarcasm as you can muster) is the way computers can just take over, and make you say - or better yet, NOT say - whatever it is that its beautiful, shiny, black heart wants you to say! Who knows when it happened? No way of knowing. You wrote, and were satisfied.

You've now gone on your merry way with a totally new idea already forming in your mind, feeling good about the work you've just completed. Gee, you're feeling almost as good as walking along, and singing "Walking in the Rain." Then you have to go back to the beginning for some reason (yep, been saving all along), and that is when you see it! Someone has stolen your work, your words..... NO! This is your heart here. Nothing less measures to a blog, than your heart! And no one is here besides you and you and you and..... the beautiful, shiny, black computer evidently with no heart! At least none for me.

So what was stolen? I'm not really sure. Okay, I missed coming here each day, and I was thinking and talking about those who touch me through having a blog, my having a blog..... I think I meant.....best I can do. Such is the following list. I know my train of thought at the time ---- to a point. The list itself was not stolen from me. It was just leading into it that was, following the first sentence.


I think I was thinking about those I meet through blogging, but cannot recall my train of thought leading up to this. Why not just drop it, you say? I don't know. I don't know why It is important to me. Maybe because a part of it is important for me to acknowledge to myself. I don't know. Take it or leave it. I'm sure it must be for me anyway. That's probably why the computer stole it from me. It knew it wasn't worth sending in the first place, second place, or any place. LOL Here is my list for whatever it is worth to anyone. It means something to me, and right now, an hour after a shot, that is all that matters. ;-)

There are
  • those of whom I know in Real Life......
  • those of whom I know throughout cyberspace world......
  • some whom I just know by their contact in the blog world .......
  • others, whose blogs I just like to read......
  • then those just from generally surfing through and around from blog to blog.....
Did that include just about everyone? Seems like it did to me. Ha! Maybe no one knows me, but this gives me a great chance to pretend that all the world knows me. Gives me a great audience, grand or small, rich or poor, you or me, which are you, which are you? hahaha

Anyway, having left off as I was leaving the Admin/Holding area coming to the third floor, "..........
and it was past 10:00 p.m. when my train left for the third floor, 322! Third floor. My second home. My home away from home. Just what is it? While I am waiting downstairs in the Admin/Holding area I know that this feels like a home to me; I can hardly wait to get up here. Maybe because *I know the drill* when I get up here. I thought it was so sweet when I got up here this time, Ernest, my male African-American nurse took my bags from the wheel chair (the hospital's, not mine:), and began to unload them, all the while my saying, "That's okay Ernest, you don't have to do that." (Remember, I'm here all alone, in a wheel chair, Jim's gone back to Blytheville), but he just keeps right on unpacking my bags (undies and all :), my not saying anything unless, "That *could* go such and such place," and him not seemingly to hear me at all. *s* 'S Okay. Ernest is one of the sweetest, best nurses I have here. It was funny because he knew exactly where my computer went - my bed! Not only that, he plugged it in for me, power and telephone. Makes me smile now, a week later that I'm getting to write about it, picturing his doing all of that, now walking down the corridor looking and being a nurse. "I might be asleep later Ernest, good night. I appreciate you. Thanks for the wave just now as you passed by."

I have slept so much, I hope I haven't slept too many memories away. My next days simply consisted of my lying here and letting this drug drip into my arm at 16 drops / min. My life for the next three days (one of the four has already passed) was pretty much a mixture of *monster* headaches, seesaw blood glucose (bg), sleeping from the pain shots, and making bg corrections. I was just looking over the notes I kept for the nurses and me, and about all I saw were basically those things. Is there more to life? Ha! I tried and tried to fight the pain meds, but they just got the best of me.

Every time I tried to write......... zzzzzzzzzzzz.......... that is what happened every single time. I would wake with a blank monitor before me. Nothing. Did that mean there was a blank head attempting to write to the computer each of those times? Is that what drugs do to you? They give you a blank head? Is there a blank head every time we try to do something? Oh, mercy me, am I in trouble then!

My show is not big enough. Other doctors were called in. An ENT doctor for my mouth. Some who know me in RL will say, "Finally, it's about time!" Haha.... NOT funny, y'all! Ya hear? There's nothing wrong with my mouth...... that whittling it down to size might not hurt (isn't that what they have blogs for). Anyway, back to being serious about my mouth..... the inside of my mouth has been painful for about two years, with blisters and/or soars all throughout it, including my tongue. It is currently inflamed on a low, or whatever you would call it, scale, now. Dr. Naida is the new ENT doctor brought onto the scene, all forces at ready, set, go! Of course, he wanted to look into my mouth "to see what he could see, and all that he could see was the great big sea, sea, sea." (Do my sign-a-longs-bore you ...haha ?) After examination, he said, verbatim, "If that is not the worse your mouth gets to be, then you have just about the worst mouth I have ever seen (for this particular problem I am sure). Dr. Naida, I assure you, this is far from the worse that it gets. Sometimes, I can barely talk because it is so inflamed, I have to change the foods I eat. My goodness, I'd never really thought about how much I go to accommodate my mouth with what I eat. Interesting. Cream of Wheat and Keebler Cinnamon Grahams.

Well, It looks like we may *possibly* - possibly means that it is the only one they have actually talked about with me - be looking at a new autoimmune disease to add to the pot..... Pemphigus who?
"Pemphigus is a group of rare autoimmune blistering diseases of the skin and/or mucous membranes." Taken from International Pemphigus & Pemphigoid Foundation . I will be going to see Dr.Naida at his office, and will be having a biopsy of my mouth done to determine the exact diagnosis. So how would blisters and irritations in my mouth, and on my tongue lead one to consider this disease for me.
The thing that drew me/us to this disease was this from all sources, but here it is from the Mayo Clinic: 1) "
You have another autoimmune condition, particularly myasthenia gravis," and then simply because of the occurance of Non-Hodgkin's lymphoma in another family member: 2) " Paraneoplastic pemphigus generally occurs in people who have cancer, most commonly non-Hodgkin's lymphoma and chronic lymphocytic leukemia."

So, there. What next?

Well, two hospitalizations ago I complained of something that could have signaled them to a urinary tract infection. They said the UA was negative, and sent me home. The next time the same symptom showed, the infectious disease doctor was here, and he ordered a culture, and it showed an infection. About four days into this stay, same symptom. Culture ordered. Result: many different bacteria. Started me on an antibiotic until they found everything that worked on all the little bacti guys swimming up, down, and around my urinary tract(ha, whew, it was getting too stuffy in here, and the air needed to lighten up a bit! lol)

Do you think I should tell you about my visit with the psychiatrist? It was a very, most delightful time. Dr. Ali, my internist and I were talking one day about some things I'd dealt with in the past. He was interested, plus I was telling him about my psychologist I have had since the mid 1980s; he asked if maybe I'd like to talk to their (the hospital) psychiatrist, and I said, "Sure, man, no problem, I'd love to." No, I didn't really say it that way, I said it nice and politely, Dr. Ali is okay; we joke and cut-up all the time. He thinks I have a sense of humor. ummmm have I got one or two to tell on him one day. hahaha

So, the psych guy pops in the door the next day or so. Very nice looking. Where in the world are they finding all these nice looking doctors that I keep having? And, so far, they all are seeming to be pretty efficient in their fields. Well, back to the psych doc. I honestly cannot remember much of what we talked about, but it was a fun conversation, and you know what he said to me, you won't believe it, but I have to tell you anyway. He said, "I'd like to bottle you up and take you with me. You are like the after, what I would strive for a patient to be." He went on to say he didn't see anything he would change me at all. The thing they were concerned about is my acceptance and coping of the Myasthenia Gravis, which I have told them that I *do* have a problem with that. A BIG problem! All joking aside on that one. I think Dr. Ali was concerned if I was coping with the MG okay or not. Maybe if Liesl is reading she can tell me, and if not, I'll try to remember her the next time. But, hey! That felt pretty good to have a doctor tell you he'd like to bottle you up and take you with him, and it's NOT to get you away from society, but because he thinks you have your head on straight! WOW Any 65 year old woman wouldn't mind hearing that!

Well, maybe I didn't sleep all week after all, once I get to thinking about it. I was worn out from talking to all these doctors and people..... had my blood drawn, too. But, I've sat up all night to write this for my atonement. I did not want to do what I have done in the past, and left this week totally out of my life, when just the opposite was true.

This week was a very big part of my life, or I would not be doing this. These monster cannon, missile-like headaches are coming with the package, but the package (IVIg) is doing me some good, and I have to stick with the program my doctor, Dr. Saeed, and I have worked out for me. The way my body reacts to the IVIg is not typical, no one reading this should look upon it as such and use it for themself. We have worked the administration of this IVIg drug to go along with how it works with me. That is what this is all about......... *MY* Myasthenia Gravis! The only changes we made from this treatment to the next is that the next one will be 1 gm/ kg weight for 5 days. I will be seeing the pain specialist later today (hehe... once I'm discharged! hooray! :), and will get the medication to see me through until we grace these doors once more.

Toodles

Striving for a world without Myasthenia Gravis

3 comments:

Cindy Breninger said...

Hey girlie-girl, hang in there! You have a Cyber-friend in CA who is thinking about you! :)

P.S. Now, about those good looking doctors...just send them my way!
Cindy
www.adayinthelifeofcindy.blogspot.com

Manic Mom said...

I'm thinking of you as well!!! Sending good thoughts!

ragdoll said...

Ooooh, thank you Manic Mom. I'm "so cited" about your blood drive, and so is Dr. Ali who was in here earlier. He said I have the souls of more than a 1000 people alive in my body now helping me.

Thanks for coming and cu later. Need to check on your site!

Ragdoll Billie