Thursday, January 31, 2008

Hearing is on its way!

Hip! Hip! Hooray!

First, the appointment was with the ENT doctor about my mouth, mentioned back in the entry I found out one thing where I mentioned Pemphigus disease. Dr Naidu came to see me in the hospital, examined my throat, and said he wanted to see me in his office after my discharge. This was that visit. I did not know what he was going to do.

When we checked in, Jim asked if they were able to refer us to an audiologist, ways to purchase hearing aids, etc., and he was instructed in who to see when we were in the back. He had already said we were going to look into them sometime this year, but it surprised me this quickly. ;-) And still..... I just thought we were just gathering literature. That was just about the first thing Jim said after a quick "How do you do, my name is Jim." Nah, not really like that, I'm exaggerating, he let me speak to her first. LOL But then he really did ask about hearing devices. She said she would speak to the audiologist, stepped from the room, and just moments later, another young lady stepped in the room. This was the audiologist. She was going to do a hearing test right then; she and I zipped in and out and around a maze of corridors until we ended up in this room literally at the end. There she put something on my head, and it seems like she zapped me..... not really, but it did remind me of some of these movies I've seen the kids (13 to 40 year old kids) watching, plus there I sat in my Super Duper Power Chair - was power going to flow from my head, right on through me, to my chair, and what were we going to do next??? - oooohhh, back to earth and reality; it seems to slip away from me now and then. She, then, directed me to go into a room that held two chairs, some shelving on one wall with various unidentified objects on them (I've got start checking things like this out more closely if I'm going to report back to my superiors with more correct material ;) I could lose my job for not being vigilant, and THAT would never do! There was also a window behind which the audiologist could sit, and we could stare at each other, oh, even a Care Bear Stare-------->>>>>>>>>!!!!!!!! After placing some contraption on my head, covering my ears, she went to sit at the table on the other side of the table. The first time through her speaking some simple words was no problem. I've picked up the habit of reading people's lips as they talked. Then she said her voice was going to be softer. Okay. Then she picked up a manila folder and placed it over her mouth. NO FAIR!!! Impossible for me to do! LOL

After all this torture *s* we went back into the examination room where Jim was still waiting on us. The audiologist showed us the different types of devices available for me. The three of us came to an agreement as to what would be the best for me, and that was that! She made an impression of both ears, and in approximately two weeks I will have new ears! I had them once before in 1991, and loved them. It will be interesting to see if throughout this passage of time, technology will have improved them to the point that they will have improved significantly. I do know that they are self-adjusting. I am excited! Looks like they might come in while I am next in the hospital toward the middle of February.

Now, the primary reason for the appointment. Dr. Naidu came in the room; he asked many questions, and did a thorough examination of my mouth and tongue. There are four teeth he wants my dentist to check out, and he wants a report of what is going to be done with them. Then he will proceed to do a biopsy of the the inside of my mouth, and tongue. All I want is for a negative reading for the path report. I am very anxious for that to be done.

Striving for a world without Myasthenia Gravis

Tuesday, January 29, 2008


Tuesday was the day I was supposed to go see the new ENT doctor, Dr. Naidu about the possibility of Pemphigus, another disease, which is often associated with Myasthenia Gravis. Biopsy is the only way it can be diagnosed or ruled out. It was a really beautiful day we woke to today. I was all ready to travel; the ills of the weekend were past. There were no reports of cats and dogs, thunder, lightening, and rain were seen and heard in abundance. Even storm spotters couldn't miss all of that. We cannot park the van close enough to the house for me to drive my vehicle to it to get me in, and then for Jim load the chair in the back. One good way for me to get a shower, I guess. Any other good uses? Jim called the doctor's office to let them know what was going on, and they rescheduled me..... I was expecting to have to wait a while, but we were fortunate..... someone canceled for Wednesday at 10:45, so everything worked out fine after all. Having slept in my granny gown, I was sorta glad when I could just stay put here and have a leisurely morning doing what I had already started doing, and now I could lie here and listen to however much rain I could barely hear, and some of the thunder. Though it scares the babies, I do like to hear the thunder. The sound machine needs to be hooked up. It's cool. *s*

We hung our Wages psychology shingle out before we sat down to our coffee time together; the babies were getting worried it concerned them, because Papa called them around as he was coming over to *my* rocking chair. All he was doing was acknowledging it was meeting time, and for them to come and join us. Most of them came, but Missie surprised us by getting up here in my bed with me. Normally, she strikes a guard pose between my bed, and the rocker, then when all is set, she lies down, tucks those front paws beneath her, and prepares herself for her duty - protecting mama and papa. We get the impression sometimes that she understand the English language by her body language in response to what we are saying, and it's not necessarily about her. This morning she surprised us by jumping up here on my bed beside me and the edge.

Jim and I were talking about my down-time over the weekend, and after a while came to the conclusion it was a good chance nervousness over seeing Dr. Naidu for the first time, even though I had seen him while in the hospital, was at play here. Not only have we seen him outside my hospital room, but I know nothing of his office procedures. That *does* make a difference! Aslo, and this is where I was thinking..... the probability of a biopsy of my tongue At any rate, this appointment has me more nervous than any I can remember in a very long while

Striving for a world without Myasthenia Gravis

Sunday, January 27, 2008

How old is the RED flour scoop?

A nice quiet day. Christen is on a cooking streak (Christen cook? Does it use a softball?), but Debbie (mom) was down first to get her (Christen) some flour for her chocolate gravy. She lifted the lid to the yellow flour container, reached in and pulled out the old RED flour scoop. She declared then and there that she wanted the old RED flour scoop willed to her! Not sure, but it has to be forty to close to fifty years old.
.............. I was using it back when I had my stainless steel set of containers, which I had been using since we got married March 31, 1962, back before I got the yellow Tupperware set I bought in Dayton, when we lived at 5493 Mithell Drive. It is important to recognize that address because we lived at three different places in Dayton, four if you count temporary quarters (Wright-Patterson Air Fore Base), where we stayed while looking for a house. It is also where we hid our little puppy, Mitsy, from the outside sweltering RED hot heat, to the inside sweltering RED hot heat, cooled by a small oscillating fan........... out of the heat because it was so hot, RED hot, right in the midst of a heat wave that we brought with us from Memphis, on up through Nashville, Louisville, Cincinnati, and right on in to Dayton. It was hot! RED hot! ...........

It was a period of time when I went to so many Tupperware and Home Interior Decorating parties in the mid-70s. I even thought about selling Home Interior there at one time...... went to work for East Dayton Baptist Church instead. I'd never taken typing in shool or college. After I was home from the interview, they wanted me to come back down to the church and do a little short typing *test* for them. It was just to make sure I really knew how to type was the reason I was later to learn...... But I didn't know that when I got out Brenda's portable *hard to punch the keys* typewriter, and practiced before going back down to the church. Nervous? Ooooooo. You bet. I could get up before any number of people and play the piano or organ, but this? Could I type? I did a darn good job as teacher, very strict, teahing myself to type on the church's typewriter at the West Helena Baptist Church, using Lynda Kay's typing book on Sunday afternoons.

That is when I would have been a Sophomore with dreams of what? For sure never dreaming then of living in Dayton, Ohio, twenty years later, married, and with three children.... having lived halfway around the world two different times, two different places...... pianist in just about all of the places we lived (Jamie Dale, you'd be pleased with your student ; ), and organist in some. Me? This flighty, silly, giggly teenager? I was also teaching myself to play the organ on the churh's organ on Sunday afternoons, and some Wednesday evenings between GAs and Wednesday night prayer services, after which we usually went to Nick's Cafe with Lynda Kay's mom and dad. They didn't have a car, but he got to bring the company car home on Wednesday nights beause of their needing transportation to church. Wondering..... Trying to remember..... Did he bring it home on Saturday nights, too, for church on Sunday? Sunday nights were busier, fuller, than Wednesday nights, so the time with the Baileys stands out more clearly than remembering if Mr. Bailey had the car then. Sunday nights........... Ahhhhhhh, no way could we go straight home from church.

I can even remember one time we made it outside after church still with no plans of something to do, no place to go, and one mom, probably mine or Mrs. Bailey, asked if it would hurt anything if we didn't go any place and went home. Oh, my! NO!! I do not know the result of that evening, but I feel, I sense a pouty memory of walking away from the church, shoes shuffling the ground, stirring gravel when it was found..... not a very *lady-like* thing to do. Who thought about being *lady-like* then? Sure, we had to dress right, like a lady, but it didn't mean all our thoughts had to be corralled to be *lady-like* and that overflowed to affect our actions ...... just a teeny, tiny bit..... just a tiny, tiny bit..... tiny bit.....

Like the night I was playing the piano for church; Carole and I had been to the lake to go swimming, and we had just barely made it back in time for Training Union, finally catching a really good breath by the time church started. ::sigh:: *Lady-like* Worried about how I looked? Mama was sitting on the last pew on the piano side. I noticed her looking at me during church. Why? I was a good girl.,
especially when I was on the piano bench. where everyone could see! LOL No talking for me. No chance. No body else wanted to sit down there. So what was the problem? Oh, boy, did I ever find out after church was over! LIPSTICK! I had forgotten to put any lipstick on, and no self-respecting girl would be caught outside the front door without a nice shiny coat of RED lipstick Just look at any advertisement in the mid fifties. Do you see anything less than BRIGHT RED? Yes, we started out light with Tangee, but as with all the maturation growin-up rituals, it was not long before we grew from that to a pale pink, and on, and on, and on..... until..........RED......... and 3 and 3/4 inch heels, RED in them, too, if they matched what you were wearing, but they *had* to match..... and don't forget the RED hat with the little short veil, probably with a few flowers on it.

I'm lost. All I did was try to remember how old the RED flour scoop was..... honest, that is all I did. I had no idea that old RED flour scoop held all those memories. Looking again, I think I see some more memories there in the old RED flour scooop.

Striving for a world without Myasthenia Gravis

Saturday, January 26, 2008

So how is Saturday coming along?

Having had to close out in a hurry, leaving the whole world dangling in suspense with a question mark, it would be nice of me to follow through with my emotional week. You know..... I just realized, well, not just now, but just now to stop and address the issue.... I have a tendency to use the word "we" rather than "I" and "I" think it is time "I" really started to pay attention to that, and do something about it because this is "my" ('nother form of "I" ;) blog, not "our" ('nother form of "we" ;) blog,

It is "my" ('nother form of "I") opinion that this comes from all those years of connecting myself with someone else, be it my husband (especially pre-1st baby days (did "I" feel this kind of connection before marriage.... "I" wonder ) ), or one-by-one, the additional child till there were three of "us"('nother form of "we" (where did darling husband go, and where does he fit in this picture.... shoved right out of it? ;)). Did "I" lose "I" in 1964, and am just now reclaiming "me" ('nother form of "I"). That means that "I" have been lost for all those (or is it these?) years, and am just now finding "myself" once again (or did "I" ever actually have "myself" to begin with? Let "me" think on it a bit, and get back to you (neither "I" nor "we" but plain "you" of which "I" am no part).

Sleep, blessed sleep seems to have done its restorative duty. Zonked, Konked. Snoozed. Sight and strength easing their way back into my life. Nice. Hard to see out of one blurry eye. Woke to considerable pain, but it did get better as the day went along. I'm ready to run out doors and play now. How I wish! LOL Not a bad day for just one week post IVIg! I'm satisfied and hopeful.

Now then. Picking up where "I" (hehe, thought you'd catch me, didn't you.... you, almost did!) left off about Ashley moving to C.C., and the high, emotionally packed week I have just had with completing my stay in the hospital for ;) my IVIg treatment, discovering Ashley had moved out of her mother's, and in with Billy, then the abrupt news that they were moving to C.C. to live with his mother.

It is important to remember that I am talking about my feelings here, and not about right or wrong. A difference of opinion might be the best way to describe the whole kit and kabootle. It is the ingredients of the mixture that determines the depth of the decisions made, and the reactions to those decisions, all of which :::sigh::: I do not think it wise to disclose fully in my blog ("my" blog, "my" choice ;) Now where I draw the line just might be a tad more difficult than I'd care to guess, but guess a grandmother's gotta do what a grandmother's gotta do, huh?

Jim was asked recently if Ashley and I were close. His answer was, "Like two peas in a pod." Indeed.

Where would I have been so much of the time in the past three years or so, had it not been for Ashley. In his absence, she is the only person that I feel could step in, and fully meet my needs (financial needs aside). I would trust her completely with my life (well, we might eat a bit more take-out, but that's no biggie ;).

How many sixteen year olds can, or are willing to help out their sixty-plus year old grandmother with her personal needs brought on by her disability?

How many make sure their grandmother is taken care of whenever we are out, when other young girls might be embarrassed by a grandmother with her grandmother's disabilities?

How many times has she soothed this grandmother whenever we were out, and my clothing became soiled.... she could make things okay with her teenage logic of "really, what difference does it make?" and she was right, it really didn't make any difference, and I could go on and have a nice time.

She taught me a lot about how to enjoy life, how to get the most out of life, after life short-changed me of being able to live it to its fullest, thanks to Myasthenia Gravis, neuropathy, and other medical issues.

She made me laugh when I had wanted to cry, smile when I wanted to frown, be happy when I was sad..... in other words, she could make my place a better place to live

How many give a personal drawing to their grandmother on her 65th birthday? *sweet*

I have felt her tenderness when taking care of my needs. I have felt her love by her gentleness.

I have seen her tenderness when taking care of baby's needs. I have sensed her love for the baby by her gentleness.

She asked, "Do all mothers feel this way," as she drew the baby even closer into her bosom, all the while kissing the baby's head, pursing tiny wisps of hair between her lips.

Why then? Why must I not trust her now? Yes, I know the arguments against.

This much I also know. I know that I do not know what is best for Ashley; only what I *think* I know. Only God knows. I also know that He loves her more than I do, a Truth that has gotten me through many bumpy roads with her in the past, as I had to take it one step at a time. That is how I am having to take it now.... One step at a time, trusting God, that He loves her more than I do, and is watching over her and the baby. My heart swells.

Sleep tight you, two. I love you.

Ashton Sears Moore 9/25/07

Friday, January 25, 2008

Come on, it's time to go home

Just thinking about getting it altogether to leave the hospital, tenses me, and I'm back to the land of pain assessment, and prevention. I repeat, stress just messes with my MG more than anything else. This is always a hard time for Jim and me. Give it some thought. Think. Think. Him do my clothes; me do my bedside stand which is mostly just stuff thrown into the drawer. My, oh, my, hasn't that changed since last May! Everything is whittled down to my laptop, a *what we used to call composition books*, cell phone & charger, Puffs, and most important of all..... that deep, shiny, maroon baby Kensington mouse that got away from me while in Admin/Holding. Whew! Get this baby back home! All packed up and ready to go, balloons for sure, and an hour earlier than anticipated.

We made it over to Schnapp's office early. Would things work out our way? Would we get in early? We were going to eat when we left his office, so growling tummies were anxious to know. Billie Wages. Hey! That's me. We had only been there a few minutes when called. Whoopee! Different nurse this time. *He* asks some questions never put to me before. Nothing wrong with them; just that since I have been seeing Schnapp for more than fifteen years he already knew these things. I dunno...... I think I just felt like he was intruding where he oughtnota. After he left the room, I turned to look at Jim. We just shrugged our shoulders, raised our eyebrows, and shook our heads like "we didn't know." Maybe he was new.

Good appointment with Schnapp, but it was what I expected. *s* We went over my pain med needs, current prescriptions, with him only changing one of them in quantity that should be just right until the next treatment. This is the best I have felt about things since the very first treatment last May 4th. It will be interesting to watch the next three weeks. Schnapp's last words to me were to get a hearing aid! We were through with everything Memphis except for eating. Abuelo's had our name on it, and was calling us, so that is where we headed. After more than a week of hospital food, it was just what any doctor would order, for sure. Well, we might have to prod - does the word coerce sound feasible? - one or two here or there. *s*

Our trip home began one of the hardest times I have had in a long, long time. I'm not even really sure what to say about it, but since I've said this much, I guess I have to keep going. Jim had already told me that Ashley was moving in with Billy. That was not too bad. Talking about my feelings here. Not whether her decision was good, bad, or whatever..... just talking about my feelings, in my blog. We were headed up I-55 when Jim got a text message. He handed me his phone where it read that she and Billy were moving to C. C. to move in with Billy's mother. Of course, that means baby, too. Say, maybe this one......

I text with Ashley on the way up to Blytheville, concluding with plans for her to come over the next day for us to talk. She was sick Wednesday, and didn't make it over here until late Thursday afternoon. I didn't even remember that we had so many tears within us. I was doing *fair* until she and baby walked in. There is no description to tell of how that baby felt as I, at first held him so tightly..... words totally escape me right now. Then he and I had some good play time together, and ended up *singing* together. He was so precious, trying to move his mouth like mine, and trying to make the sounds I was making, just the same sound over and over.

Then we had to make kisses. He was all into doing that! Slurppy kisses. LOL It was hard to play with him because I got so tickled. It brings a smile to my face as I am remembering now. Oh, Ashton, you beautiful, funny, baby boy! How I do love you.
This is the sloppy, slurppy tongue that likes wet kisses.

Just an all-around beautiful baby boy with great big eyes.

Now this is a baby that is ready to go to sleep.
Sleep, baby, sleep.

Nah, no time for sleep. Man's got things he's gotta do.
Like give his Mammaw slurppy kisses for one thing..

When Ash got ready to go home, she gave Ashton back to me for me to have for a bit. I took him, but it just hurt too much, and I had to give him back to her. It was not good nor right to subject the baby to the war of our emotions, because there was no doubt she was full of them also, though it was the hardest thing in the world to do.

So, how has Friday been? Physically, better post IVIg than any previously, I think, to the best of my recollection. Emotionally. I thank God for computers, and my skills to be able to at least be able to be productive as my mind is off on the obvious. Why? What would it be obvious? Too much for now.

Gotta call it quits for now, quickly. MG has struck big time, and I'm having trouble closing this up, and publishing it. I have very little use of my hands and fingers, plus I nearly fell during a trek to the ladies room just moments ago. Tremors of the arms, with strong tremors of the hands, especially the right one. Breathing is labored. The weakness feels as if I don't care if I never raise up from the bed. It feels soooo good to lie back, the head is elevated approximately 45 degrees, so I do not have to worry too much about choking should I fall asleep, and my neck is getting good support. Means I can relax. Means I can just go and read in a.s.d. The sudden drop was most likely caused by the stress of the related incidences. Good or bad. Stress is stress is stress, and It does not take much at all to set me off. seem to be stuck in "Go" and do not know how to change gears! Let me go and see if I can find them somewhere. *s*

Striving for a world free of Myasthenia Gravis

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 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.


Striving for a world without Myasthenia Gravis

Where oh where have you been Billie girl, Billie girl

Where oh where has this girl been? Not hiding under a bushel, nor under the sheets (except for modesty:). Flying high with my balloons (from Bankie). Beneath the tip of the needle in a syringe (wheeeeee), maybe, could be, maybe, good chance, maybe, maybe. That's where I am right now, but I am determined to post something to you at least.

Sleep, sleep, sleep, sleep....... that is where I have been, and I am afraid that is where I am headed all over again. I really did think I could fight off the sleep this time because I felt so good when I checked in one week ago today. Wow! One week ago! It doesn't seem that long, on the other hand it does feel that long, and maybe even longer. Hopefully, I am homeward bound today. I am ready to go. Ready to see my babies, my kitty kat babies. There was a rumor going around that at least one of them had taken to curling up on my bed some. Maybe she'll be found waiting for me there.

Hey! This feels good, being back at the computer. Just posting this for now, and back with details in a bit. I don't like being away from here! So, let me so get *organized* and bring my thoughts together. Have something I saw that I might want to try on my blog, but not sure if if I'll ever find it again! HaHa That's me!!

Striving for a world without Myasthenia Gravis

Tuesday, January 15, 2008

Holding time

Bang, clink, clatter…… Ummmmm,..…..ahhhhhh……. ducking my head in shame, and mortification, after all I am surrounded by sick people in rooms all around me.. Now why didn’t I think to take a picture of the Admin/Holding area! There I was, phone right there in my hand…. Tsk, Tsk…. Falling down on the job, Billie, these days! Joyce turned my way, shocked, startled, at the damage I clearly must have done, to the relatively new building (I believe four years), or *most importantly* what had come to pass to my Kensington mouse – the babe, only a couple months old, and love of my life! After assessing the situation from all angles, preparing for rescue, then with show of strength, she pulled my bed out from the wall, and recovered the infant mouse for continued use. Rescuing computer mice certainly was not something Joyce learned in nurses training, unless they had added to the curriculum since my days there in 1960, but I am sure that meeting the patient’s needs was, and I would say that Joyce met my needs when she rescued my mouse for me. No one can ever imagine the need I have for the relationship for my mouse and me. Even whenever I am not utilizing it, the need to *feel* its smooth, slick, shiny exterior resting in my right hand is there. I’ve mentioned earlier about the Kensington SlimBlade. It is a beautiful deep maroon, glossy finish, sleek, cell phone shaped mouse that I have come to really appreciate. It’s not loaded with a lot of extra bells and whistles, that could go wrong with it, just a nice flat, sleek design, like I say, reminds me of my cell phone./span>

We turned out the lights, and I felt safe in an *if I do, if I don’t fall asleep* is okay mood as I continued on with searching my brain for more words of wisdom and entertainment – both are dubious - until…………….. clamor in the dimness stirring the peace and quiet. Staff heads popped up around the nurses’ station, as I exclaimed, coming from a nice deep sleep, “It’s okay. It was just my mouse.” Ha! Even in my sleep, the first thing on my mind upon awakening was keeping up with my baby Kensington! What is it, last thing in, first thing out? LOL One of the nurses came and picked it up from the floor for me. Were it possible, I’d have tied it to me somewhere. The bed was just so very narrow, though, and hard to keep things from falling off the sides. I tried, I really did try. ;-)

Tuesday, 6:30 a.m. January 15, 2008. The month is half gone already. What do I have to show for it? What do you have to show for it? Think on it. Time just passes so fast, and thinking of one day at a time, day by day, sometimes we let those days pass without accomplishing anything at all….. not necessarily a good thing, huh? With my MG, I try to set goals, knowing that an MG day with an episode might knock a hole in those goals, but I do strive for more than just lying around. But, back to the reality of this day……..

What kind of day is this? Playing the waiting game. Waiting for someone from the third floor to go home so I can go and take their place. knowing there is likely not going to be a chance of my going anywhere today. I settle in to make myself comfy for another day in the Admin/Holding area. Not at all a bad place to be. Nice, one on one service here.

It got noisy, noisy, noisy here early in the evening. People moving all about. I found out they had gotten rooms! Whoopee, good for them, because you know what that means! I am high, now, on the list of hopefuls, but since I’d already been told there was not much of a chance of my going anywhere that night, doubt crept in like sneaky snake. Therefore, when Joyce stuck her head in through the curtain, BIG smile on her face, and said, “You’ve got a room! 322!” “Really?” Now, Billie. Why would Joyce tell you that if it were not true? How many times do we say things like that?

[OLD STORY] I grew up with one sister, and knew nothing at all about raising boys, so I had a lot to learn when my first baby was a boy, and we were in Izmir, Turkey. Then I had a second boy. I loved my boys, but I still wanted a girl to end up the picture. Third pregnancy. I *did not* consciously express a desire of one gender over the other by this time because it truly did not matter. I had learned about little boys, and loved my two immensely. So it was that I went into labor. No one little girl thing on the premise.

I have short, easy labors, and the doctor and I were cutting up, telling jokes as I lie there having contractions, pushing, doing whatever they told me to do, and then with the final Big Push, and Dr. Bondi, saying, “You’ve got a girl!” Know what I said to this doctor, a real doctor (he didn’t play one on TV), a professional (he wouldn’t lie to me), “Are you SURE? You’re not joking with me are you?” We had been cutting up to the point that part of reality has slipped away in the process! And, no, I was not speaking through any drugs, because I had not had any of any kind. I’m just crazy as a betsy bug as they used to say back in the 40s and 50s in my neck of the woods. Anyone know what a betsy bug is? [/OLD STORY]

Joyce had talked to Ernest; they were getting three new patients, and it was past 10:00 p.m. when my train left for the third floor, 322!

See you there!


Striving for a world without Myasthenia Gravis

The anticipated day . . . .

. . . has arrived, Monday. God has shown His splendor all around us as the sun shown brightly through the trees from the cloudless, brilliant sky. It has truly been a superb weekend for us; it was all I could have imagined or hoped for it to be. Little more could I have asked of it, except for it to have not come to an end. It was cold, down in the twenties, but since *I* didn’t have to get out in it, that did not affect me one little bit.

We had our *druthers* plans to leave fairly early, but poor Jim, alas, he was being pinned down by three of the babies, Anna Kay, Callie, and Missie…… all stretched out crosswise his legs, one right after the other. Now, there is no one who could disturb peace and comfort such as that. At least they better not in this household!

My case of nerves had hit me again, as before, and I was not putting it in high gear by any stretch of the imagination, actually being a bit laggardly. It still baffles me as to why I get this *nervous* feeling before leaving each time, for it *is* something I do look forward to, and am comfortable in doing.

We hit I-55 South by 10:30, after stopping for a couple of things, the latter being a Sprite for me at Mark’s. Had it not been for Jim’s Herculean might and speed, well, let’s just say about our Time of Departure - we did well again this time. Two months in a row!, and the Estimated Time of Arrival at St.
Francis Hospital – Bartlett, Memphis, was noonish…. That is *my* estimation which gives +/- leeway for me to be right regardless. Sneaky old woman.... LOL

BINGO! Just a few minutes before twelve noon, we make the exit, and cross back over I-40 on the Adrian Rodgers’ Memorial bridge, down to Stage, on to Kate Bond, and TA-DA! My home for the next four to five days. My next step on my Road to Remission. What awaits beyond? How much of past experiences will be replayed, or is that borrowing trouble when trouble does not exists? Let’s go see……

The parking lot is full, handicap places nearest the ER entrance are full, and as we drive along the front, we see plenty of empty, reserved doctor spaces…. For quick getaways from patients like me? Ha! As we come back around on the row behind, though, there are plenty of handicap spaces, and a van accessible
sized one at that, which makes getting into and out of my chair easier. The spot we snag faces the front door. I ask you…. how much better could that be? Though such a gloriously beautiful day, it *is* quite cold so the short ride to the inside is potentially welcomed. I get my heavy jacket on while Jim gets the chair out….. we meet up (sound passionate? Awwww so sweet).

Whenever I step out to get into my chair, there is a gentle breeze, just enough to go with the cloudless sky, and an urge to walk like I cannot remember having had in a long, long, time. I have the neatest pair of walking shoes, diabetic, none like I have ever had before – funny, huh? Why?– they are just so ever lovin’ comfortable, and feel just right for walking, OR for what I remember walking more than just a few yards to feel like. I wanna walk! I wanna run! I wanna skip! Honestly, it has been a really long time since I have had even a smidgen of that yearning as powerfully as this one today. I stood a moment in front of my chair before sitting down, seriously expressing this desire to walk to Jim, and he said, “Yes, and I’d be right behind you to pick you up!” Why does he always have to be so realistic, so right, so spot on? So funny - sometimes? At least he broke my unrealistic thought process I had drifted into.

Everything is not just from the beauty of the day. The wonderful *feel good* feeling of the weekend still prevails, even after topping off the packing, getting dressed, out the door, and on the way, which most often can be exhausting for me by now…… part of *MY* Myasthenia, and has been for lots of years. So. Put it altogether, and what do you have………. The commencing of a week of indescribable blessings – my Belief, all mine, my Hope, all mine; both of these I need as I *walk* down this Road to Remission.

We make our way to the ER for Direct Admit. Come along. This is part of the journey, too, you know.

What do you think? Do they have my doctor’s orders or not? Those who have been with me from the beginning know they have not had them more times than they have had them (not a scientific count ;). Jim stands closer to the desk as I roll up, and see the ER clerk thumbing through a thick sheaf of papers without apparent success of whatever it is she is seeking, putting 2 + 2 and coming up with my doctor’s orders. The hospital had made two telephone calls to us with my orders before them so at one time they *did* have them in this hospital. I know….. this must be some new game they have created, and they are trying it out on me to check. The big question is where are they now? Will they have to call and have them faxed over again as they did last month? I tug on Jim’s coat sleeve for his attention, and then give him the signal for him to keep his cool, and not get too upset – yet. After talking with a couple of ladies, and making a few phone calls, voila! There they are! Now, not so fast…. that is after them telling me I was coming and going at different times and places last week, I think maybe, the records simply being misplaced Is actually remarkable. It could have been worse.

As we were sitting waiting, a sudden realization came over me when I knew exactly where and why the *nerves* were coming from..... having to be separated from Jim. It was not until I was actually to be packing my bags that it would hit me, the reality of going off. That is why the same-day surgeries do not bother me, he is on the other side of the door, but these simple lying in the bed a few days with no trauma involved do. It was not a thing of not wanting him to have some free time, nor my being afraid of anything, and surely in the past 46 years, we have had plenty of times apart, but this seems so different now. We have grown into one, and as Dr. Liesl said tonight, he will be my greatest strength in the days to come, and the reverse be true of him, because that is all we have ever know is to depend on, and draw or strength from each other, and both of us draw our strength from the Lord. I remember one day while I was down here during a treatment, I do not recall exactly what we were talking about, but saying to Jim, that it was just "you and me," like always. We are never surprised at it being just him and me to work things out, and one way or another we've always gotten through the ordeals to the best of our knowledge whether it suited everyone or not. I love him.

They have here, before them, a patient *they* have told to come for direct admission. The St. Francis Hospital - Bartlett has had to create the Admin/Holding area where patients are taken to be in a more comfortable waiting environment, while waiting for their room to become available upstairs. This prevents we wittle patients from having to sit hour after hour in the ER waiting room – been there, done that at the beginning, ohhh, murderous, and a story worth digging from the Google archives of Alt Support Diabetes, and telling - allowing them to go on, and get into bed, and whatever treatment they need, to begin to be administered. All in all, a much more comfortable arrangement in a stressful situation for hospital and patient alike. I was the first patient they opened the extended area up for back in the summer. It has now become a full-functioning nursing unit, seemingly in use each time I have been admitted to the hospital, a new hospital already in need of expanding!

Now what I am being told is that I will be going to Hall bed #7. Yep. I’m sure you are understanding it completely! No misunderstanding on your part. You are just as intelligent as you have thought you were. I’m gong to hang out in the hallway, here to wait for a bed just to get into the ER area…… not even to the Admit/Holding area! Ohhhh…. Owwww…. Ewwww! Now what could this be compared to? One thing for sure, I stay in my jeans and sweatshirt (*I shiver, as this feels strange*), and stay in my chair for now (security). Though I’ve gotten *un-used* to it for just sitting in for long periods of time, it still is better right now than getting up on Hall bed #7. Besides, I need a table to eat my lunch that Sweetie Jim has gone to the cafeteria to get me, and the height of the bed is just perfect for my chair height.

Gobble, gobble, gobble….. food, food, food! I am so hungry. Billie, just how hungry are you? Hungry enough that it felt like I was inhaling my food directly into my blood stream, by-passing the digestive process...…. could that help me with my blood glucose control if it went straight to my blood stream, bypassing my digestive system – I think so…. no, just joking.... they were such good vegetables; he made good choices, but not *nearly* as good as those my sweetie chef makes at home, especially the squash!

Jennifer, my cute little nurse, who is our granddaughter Jennifer’s age, came to get my IV line started so that whenever the pharmacy gets my bag of immunoglobulin buddies ready, I’d be ready for go with it, and invite them into my veins. We also thought it was a good idea to go on and get into my jammies at the same time, saving me effort on my body later.

I finally had just about all of sitting in my chair that I could take, plus I was beginning to have computer withdrawal – no Internet until in my room - because I kept seeing things I wanted to write down, or look up, or this to make note of, or, golly gee, just whatever, the feel of the laptop on my legs, and the mouse in my hand. I see me now, “Hello, my name is Billie, and I am a computer moue addict. I go into convulsions whenever I have to go without a mouse within my hand for more than two hours, or if it is apparent one is not readily available.” Jim noted an outlet behind my Hall bed 7, and we decided for me to go on and get up on my bed, hook up my computer, and get down right comfy. We had packed an overnight bag for the ER that contained computer, mouse, and jammies. It was getting late in the afternoon, and this would also make it easier for Jim to gather his little self (he’s lost a bunch of weight) up, and get on his way home….. via Senatobia to see Jimbo’s new office, then chugalugging it on up Blytheville way before it got too late. It would have been a long day for him by that time, neither of us take the long days as well as we used to do.

Meanwhile, back at the *hospital ranch* on Kate Bond……. I finally got moved from the hallway into a room *of sorts* still in the ER area, and hey! get this…… There is a real live wooden door to it, a bathroom, a sink….. not bad for an ER cubicle. One thing was missing, though…. one very vital thing for someone in the hospital – a nurse’s call button, and I needed a nurse in the worst kinda way! I had fallen asleep, waking only at 12:30 a.m., when Amy was hanging my IVIg bag. Once tethered, to the IV pole, it is hard to maneuver around since I need to hold on to something or someone for my own stability during a short walk such as that would be.

That private bath was doing me no good if I couldn’t get to it. Know what I mean? The pressure was mounting minute by minute. Each time someone passed my open door, I tried to get their attention, but have you ever tried to yell, “Hey, you!” at 2:00 a.m. and there was a sick person (well, I guess they were sick, they were in a Hall bed in front of my door ;). F-I-n-a-l-l-y Amy walked into my room, and was I ever so happy to see her. I could have hugged her neck! Instead, we got me out of bed, walked me to the private room, then she led me to my chair once again. “Mrs. Wages, you’re moving once again. This time over into our Holding area.” Ahhhh yes, I’m very familiar with that!

Over in the Holding area, I meet a new nurse, Joyce. When she checks me in, about the first thing she finds is an infiltrated site, looking mean and red, really ugly. No doubt it has to come out. But it was so hard to find, so hard to hit in the first place. How much is it going to take for that guy Arron to find oil because Joyce didn’t even make a first attempt at my poor little arms. They look so beat and roughed, no longer the smooth arms of days gone by, now with wrinkles and crinkles all up and down. Here comes Arron to the rescue, though. A look here, a look there, ahhhh… we go, slide right in…..BINGO, we’re in! Hold that canula in place….we’re set to go whenever those little globulins are prepared and brought from the pharmacy.

Three o’clock has brought a wealth of treatment – a new IV site, ouch-a growing headache, a percocet – settle down now. It’s been a very long day.

Striving for a world without Myasthenia Gravis

Sunday, January 13, 2008

My most treasured gift, My eyes can speak!

I started this a few weeks ago but did one of my famous falling-asleep-while-in-the-middle-of-doing-something-routines, and then while asleep my post published itself! I woke to the "You've successfully published...." message. Totally empty. The way I think about things, trying to put it into perspective, I just figured that was not the right time for me to write that. Why? Couldn't tell ya. Still don't know. Could throw out some guesses, but what good would that do. Best to just accept that there must be a better time. Hopefully, this is that time. Gonna give it my best shot any way.

I just keep learning more and more about MG, and how it had already been affecting me before they put a name to it. One thing I did not know about was how it was affecting my face. Since I am the one going around with the camera stuck in everyone's face, I rarely have my own picture made. In 2005, though, my graduating class was having its 45th reunion, and I began to see pictures made of myself. "But I was smiling!" I would say, and make another attempt,
trying harder and harder to get a break in the ole stone face that stared back at me in the digital camera. If anyone else was putting that much into a grin, they surely would look crazy, and inside of me, I thought I would, too. It felt like my mouth and eyes were stretched all over my face, ear to ear, eyes closed, squinting from smiling so hard. Nope. Okay, I just knew that it was okay for me to over-smile at the reunion. It sure felt crazy; unnatural.

This was before diagnosis, so I had no idea why my facial muscles did not respond, but just like all the other things that have popped up throughout the years, I just figured out how to live with it, and went on my way, not knowing what I actually looked like. Ole stone face. That was it! No expression on a face that has exuded joy and happiness for..... well, as long as I know, I guess. A lover of life, and people, and you could not tell it. Blah. Were it "The Christmas Carol" you might have looked at me and said, "Bah, humbug!" My family didn't know why I looked like a grouch all the time. How could they? None of us knew. This picture is more recent, a year after diagnosis, just after my first IVIg, and a year on Mestinon, but still with the inability to smile when I was trying so hard to do so. Not only was my mouth for my smile affected, but my eyes were affected as well. Jim calls this my serious look, and unfortunately it's the way I looked all the time.

The ptosis (droopy eyelids - covers the pupil, obstructing the view) - was really bad, and when I went into the hospital, I could see very little. Subsequent IVIg treatments have helped but the problem still exists today. This picture was made after several treatments. I have monovision, with near, reading vision in my left eye, so I *can* hold my left eye open and read fairly well. Currently, though, my vision *has* improved, and the lids are not as low as they were, and I can read my laptop monitor, the newspaper, and books (if I can tear myself away from here ;), even though my eye lashes are somewhat drooped into my line of vision. As is typical with Myasthenia in general, the more fatigued you are, the more the symptoms arise, and this is certainly true of the eyes...... at least for me and *MY* Myasthenia. In the photo, if I were to let go of the eye, it would drop down to the level with the other eye. We were at O'Charley's, and I was doing that to read the menu. Then we were acting silly, and I don't think I ought to put those photos up here. What is growing old, becoming a Senior Citizen, living in the Golden Years for if you cannot have some fun along the way? Right? Right. *s*

Droopy eyelids is not the only involvement. Eye movement itself is involved, and I have had trouble moving my eyes back and forth, up and down, and any other movements you might think of. The year, 2007, was a rough year for me, and it seemed to be ending the same way. Christmas was turning out to be deafening quiet. Christmas Eve, Jim came to my bed with a Radio Shack bag in his hand, saying, "I know you like to wait for Christmas Day, but I thought you might like to open your Christmas present now." I had been feeling really, really depressed, in addition to the physical problems brought on by the IVIg still hanging on. He handed me a jewelry box, a small, black velvet square one. I gingerly opened it, and inside was the most beautiful diamond ring! My eyes lit up widely, and I exclaimed a big, "WOW!" It was then I realized my feelings on the inside were being portrayed by my eyes on the outside! Oh, how long had it been? How long since I had been able to move my face around so that it would express what my mouth, and most importantly, my heart was saying? I do not know because I do not know how long my facial muscles had been being affected by Myasthenia Gravis! I'm so HAPPY. I make the craziest faces now for no reason at all. See, is this not reason to keep trying with the IVIg treatments? Is this not reason to put myself out here and let everyone know about Myasthenia Gravis so more can know, and more research can be done for the future? This is reason for me to keep going. For me to keep trying. It is why I refer to these treatments as the Road to Remission. Small increments have already been made. Well, babies learn to walk one step at a time, and I am reaching remission one step at a time. And now my eyes can say to you how I feel on the inside. Maybe not as great and grand as they once did, but surely better than the ole stone face, frozen face I was before we began! My eyes now speak. They no longer must sit idly by, looking all serious, mad, grouchy and so forth.

I can look here.
I can look there.
I can look over yonder.
I can look down.
I can look up.
I can look happy.
I can look glad.
I can look joyful
I can look cheerful
Oh, how I love to look everywhere!

Striving for a world without Myasthenia Gravis

Saturday, January 12, 2008

Singing in the rain

After all the rain and cloudy skies that felt so cozy to me, today brought rays of sunlight into the living room, and were just as welcomed as the rain. Easy for me to say, huh, since I'm not one who must get out in the rain. But sometimes, it is fun to walk in the rain. I remember one time I had been to an organ lesson. My teacher lived just down the street from me, so it was a nice walk, and I always felt good, felt lighter after a lesson. This one particular day, it started to rain while I was inside learning to heel and toe, and more, and when I opened the door to leave for home, my teacher and I were surprised to see it raining. No umbrella was at hand. Not sure how I protected my music, but I headed on home in the gentle rain, skipping, glad there was no choice but to get wet, not a really soaking wet, though.

I have often wondered why I remembered that little walk in the rain. Maybe it was the *Little Girl* still within me, the *big* high school girl. ;-) I had initially taught myself to play on an old pipe organ that had been used in the local theater during the silent movies. Now, *that* would have been something to play for. LOL I would have liked that; I just liked playing no matter what. Oh, if I could just have lived on the piano bench, how happy I would have been. Many hours were spent there, but deep within me has always been a desire to be more of a performer than I ever came close to being.

The thrill, the rush when called to center stage at the end of a performance cannot be explained, especially when you were not expecting it in the first place. Ankara, Turkey. 1972 .The Chapel Choir Spring Concert. I was the organist. It was not even for certain we would be able to perform because there had been anti-American bombings the night before upon the building, but it was deemed safe for the concert to continue as planned. That many years ago, I cannot remember all the songs they sung, but I do remember one that I have loved throughout the years, and it is "This Land is Your Land" I found a video at YouTube, but could not figure out how to get it in here. More Blogger stuff to learn. I could get it into the sidebar, where it was too wide, but not into here. Anyone got any idea, instructions, I'm all ears. LOL

It has been a nice day today. Only had to take the pain med for the usual pains, those mainly in my legs, and then for my back because of sitting up here most of the day using my arms. I remember telling the pain doc yeeeaaaars ago that using my arms, outstretched before me would bring on the girdle pain in my lower back. Then, sitting down, relieving all weight and pressure, the pain would lessen. Always the same, never deviating. Bit by bit we are learning more and more about how much the past has been involved in the MG. More recently, some unanswered problems with my mouth and skin looks like it *might* be a condition cal Pemphigus . Pemphigus is associated with other autoimmune diseases. It has been reported in association with myasthenia gravis.

Ahhhhhh....... it feels like a fresh, gentle rain has swept this way....... I freshened up the bod a bit, using Donna Karan Cashmere Mist. From soap, to lotion, to perfume........ Ever tried it? No, not you guys. it smells the nicest in here now. Feels good, too. How does smelling good make you feel better, I wonder. Oh, the power of the mind. After a rest, I will have a bowl of soup to top off the day.

Time to go.


Striving for a world without Myasthenia Gravis

Friday, January 11, 2008

Doctors and Hospital Rule again and yet again!

I have this crazy ringer on my cell phone. Don't know how I got it from what I did have to this one, but it is crazy! Have yet to be able to understand it! At least it makes a noise, and I know which phone is ringing. I do not talk on the phone real well, so am not accustomed to answering it. Most calls are from daughter and granddaughters, and from doctors' offices sometimes confirming upcoming appointments, but most of those go to Jim's phone since he manages my appointments.

This morning began with this crazy, glaring *noise* which I knew in a moment must be St. Nick.... no, no.... I mean my cell phone. It was a rare voice call of unknown origin which I am reluctant to answer, and not one of our usual text messages our family depends upon..... or is that addicted to? LOL Say what you will, but using text messaging has been, and I am using the term as a cliche, a life saver for us, with my sister in North Carolina going through breast cancer last year, and now with Non-Hodgkin's Lymphoma, our granddaughter and her two children with another on the way in Ohio, our son in Mississippi, and us with daughter and granddaughters and Ashton here in Blytheville. It is so easy to just send a quiet message that we are thinking of one another, plus we send pictures of the babies around. My phone is loaded with them!! *s* I've learned to take one-handed camera phone pictures of Ashton while I am holding him. Gotta catch it while my arm is strong, before it is weak and trembling, and even then I'm learning to find places to rest it so I can get a clear picture. Now, I've just got to get update pictures of Matthew (4) and Kaitlyn (2 in Feb).

Okay. Tangent aside. This lady says, "Mrs. Wages." Well, that means she has the right number, and she knows it is I to whom she is talking. Ohhhh no. She then begins to tell me that she told my husband that we were to report to Outpatient, but the hospital called .......STOP! He needed to hear all she said, because with my hearing impairment, although I knew what she had just said, he needed to hear her clearly and all the details. Can you guess? I bet some who have been along for this ride from the beginning can. Not Outpatient and Admissions after all. Back through the ER again. A moment of silence. Think this over a bit. Think about the previous post on why I was happy to be going through Admissions and not the ER. Actually, well, I really do not know in the event they did not have a bed for me whenever we checked in, and I would not have the option of going on and being admitted so we could get the treatment started. Going through the ER is a sure-bed in Holding without much wait, albeit temporary for a few hours, whereas going directly through Admissions just *might* not be, leaving me stranded for hours in the waiting room....... or something...... who knows?

Now that I know what is facing me, my mind is already figuring how to make that possible side-track easier than the past ones, while hoping with all I've got that it will be a straight admit from the ER. It *has* happened before. I do not always have to hold over in the ER, it just depends on the patient census at the time. That has been a very full hospital this fall and winter.

Running through my mind now are ways I might make a possible Holdover easier, less stressful for me, since I will - as it looks right now, but we know that could change - be rested, and relatively pain-free when starting out. As Jim stated earlier, when I was wishing to *do something* this weekend since I felt so good, everything could be turned around in the other direction by tonight. Yep, that is *MY* myasthenia!

The hospital cannot change because of me, so I have to fit myself around their methods, and I *do* have a good idea of what that is now! Eight months worth of learning under my belt! I must do what benefits me most. I am determined this is going to be a good, and profitable treatment this time! It takes a team to fight Myasthenia Gravis, to get it under control. When I started out last May, the nurses knew close to nothing about MG. Amazing what they know now! Maybe it is good they are learning from an atypical patient, so they can be prepared for almost anything in the future unless a cure is found for the disease. This is one of my purposes in being here, to draw attention to the disease, with hopes of people learning about it, and how it affects peoples lives, people to include more than just the patients themselves. Nother subject, nother time.

This is the day the Lord hath made. Let us Rejoice and be glad in it.


Striving for a world without Myasthenia Gravis