Saturday, July 26, 2008

Mumble Jumble

I am getting ready to go to Jonesboro and there are interruptions galore, and this is the way things have panned out since I started this yesterday. I am going to stop now. . . you do not know where I am. hahaha

I am choosing a point, but I want to get this published. All I will say is that in addition to this, Debbie and Christen are down here now. She ate breakfast, has given me a manicure, and is now gone to get the fixings for lunch. So, here goes. And, I'm not even going to take time for a picture or two . . . I don't think so anyway.

Saturday morning (it was at one point). Well, the clock in the corner of my monitor tells me it is afternoon now. Yaaawn. No, I have not been sleeping all this time. I have played countless games of Mahjong, while I have unremittingly tried to figure out AllMediocre. Wow, there is so much there! It may be while I am being infused next week that I can take the amount of dedicated time to figure it all out. Unless............... some sweet soul from there will make an attempt to contact me. I notice how much AllMediocre has increased my traffic load, so someone is understanding it better than I am. My eyesight is bad today, so a lot of constant reading, has been a no-no, hampering my reading. Doing my best, though.

I am getting ready for a first. Tomorrow Jim and I will drive over to Jonesboro. We will check


Isn't that what they say and do whenever something big and newsworthy comes over the news wires ( I see "Miracle on 34th Street," and Santa coming into the court room?")? Anyway, I consulted with Jim, and he did not understand what I was talking about, so my feelings are not hurt if you do not know one iota of what I'm talking about, either . . . but, my aunt just called me.

It has been ?.?? years since we have spoken to each other! Do not misunderstand. I love her - doesn't sound like it, does it? - and I read about my uncle's death in the newspaper), and was very excited when I realized who Jim was talking to on the incoming call that indicated to me it was someone from my childhood/premarital days when he said "Billie F_." okay, you'll guess it anyway, "Frances, Billie Frances." Why, after all of these years am I'm trying to stay away from that name? Sometimes I'm okay with it; some times not. I guess that was a meaningful time for me in growing up, something like a snake shedding its skin, becoming an adult. One of these days, I'm going to have a television in here and I can watch Animal Planet, one of my favorite places. Okay, are you thoroughly confused here? My eyesight is bad, and I cannot find my way here, but let me try............
............. well I couldn't do it. This is where I was, and I have a feeling I erased part of what I had written, because the following doesn't make sense to me either. Oh , but, I do I know what I was referring to, and that no one has has called me that since we married, and Jim drove me out of West Helena, Arkansas, in 1962, and took me with him to Montgomery, Alabama, and a whirl wind life to the United States Air Force, where he was serving on his second enlistment. Well, thanks to technology, email and cell phones have made it easier for us to get back in touch with each other again. Not that we've been a zilliion miles away beyond the moon, but it has just taken a long time for me to get 2 + 2 to = 4 so that my Aunt Alice could call me.

Now, I am the niece. I am the younger. It is *I* that should have been the one to do the contacting, not her. Right? It is people like me that I talk about neglecting the older generation. *I* am a *next generation*, too. And, furthermore, it is my son (and his wife Donnie, too) of the *next, next generation*, that probably has had the most to do with us being in touch, second only to Aunt Alice picking up her phone, and making that sweet call. That *is* sweet isn't it Aunt Alice. and sweetly confusing. I just wish we could get Aunt Margaret computerized, and on here, too. Wonder if there is any way possible. We'll talk.

I told Jim afterwards that I know where I get some of my *me* personality traits, and something I didn't tell him is that I no longer am going to make excuses for the way *me* am any more. I know now it's in the genes! Yep! I'm anxious for us to get together, too, and as close as you are to Jimbo in location, Senatobia and Tupelo, I doubt it will be a problem. We'll just use email from here on out, and if need be, with cell phone covering the virtual no cost of long distance, I do believe we can manage a phone call if necessary. We do tend to engage in lots conversation when involved in phone conversation, though, don't we? I'm just looking forward to emailing with you, and catching up to date.

Readers, I promise to do my best to keep it out of your view, to keep from boring you, but I am not guaranteeing a boring read at best if I can help it, but you'd never know it was a sixty-mumbuled and an eighty-something or other just talking for almost two hours. We just had a lot of fun didn't we Aunt Alice? I'm looking forward to some more like of it! Time. Awake. Two valuable comodities of mine, even just lieing in this bed 24/7. When one doesn't get me, the other one does. But sleep does more often than the other one.

Oh, TIME, it is time to get out of here and get things ready to hit the road to St. Bernard's hospital and get ready for tomorrow, and on top of everything I am N E R V O U S . Will they be able to access my port? Will thy be able to get a blood return? How many this? How many that? I have a zillion question or two.


Striving for a world without Myasthenia Gravis

Thursday, July 24, 2008

I make mistakes, then have to make corrections

I said this yesterday morning ,"We are off to see Dr. Latiff, the endocrinologist for my diabetes this morning, and Dr. Frankiln, my internist, this afternoon." Not so. It was Latiff in the morning, and Dr. Gubin, the urologist this in the afternoon. The urologist is the same one who did the robotic surgery (see robotic arm in picture) on Jim, and had done the multiple lithotripsies for kidney stones on me previously. I was seeing him for urinary incontinence and infection with blood in my urine. I will be having further testing and CT scans later to determine the source of the incontinence, and whether he can do anything to help me or not. I certainly hope so. And to whether there are more kidney stones.

This has been a rough week. Well, more like a busy week, and I am really, really tired, plus I have a terrific headache. Normally, in the past, I would have been sleeping this day away, but look at me . . . I am here! But, I'm not staying here. This is going to be it for today. As dedicated as I am to publishing a blog entry as near to daily as is possible, I just have to give in today. There just is not enough of me here to do it. Thank you MG!

I do not know enough about my herniated disc to write about it, except that my neurologist has referred me to a neurosurgeon. Now, remember what I said the other day, it is possible Jim has told me something that I failed to "hear" so maybe I do have more information other than it will be in September. When I am not feeling so bad, and my head does not hurt, I may remember better. That's me!! Plus, I'm not really interested in something else right now, are you? It's easy to put it aside for a month.

So, until after further rest . . .

Striving for a world without Myasthenia Gravis

Wednesday, July 23, 2008

The MRI tells the story

Yesterday was the MRI and blood work day at St. Bernard Hospital in Jonesboro, after which we ate at O'Charlie's, then went to Wal-Mart. Simple enough, huh? Well, let's see. Up and out of here by 7:15 a.m.! Will life ever be the same after that? What a shocker to my body. You know, I still do not remember it being that early. Jim must have given me some of that

We got to the hospital for the MRI with time to spare. Jim dropped me off at the Admissions Entrance. I waited just inside while he went to park . . . in the rain! It was beginning a light rain when I got out. He must have been a good boy, because he said it stopped raining just as he parked and was getting out

Thursday morning, and I've let so much time slip away needlessly. After that trip to Jonesboro I slept all of yesterday morning, and laid here and played Mahjong a lot of the rest of the day, feeling okay, just weak is all. This is progress. I used to need to sleep for two days after a trip like Tuesday.

I don't really have a lot to tell right now except that the doctor called yesterday morning, and said the MRI showed that I have a herniated lumbar disc. That's all. I have an appointment in September. Aghhhh. That seems so far away! Guess if I have lived with it this long a few more months won't matter. ????

We are off to see Dr. Latiff, the endocrinologist for my diabetes this morning, and Dr. Frankiln, my internist, this afternoon. Both in Memphis. A LONG day, so I day, and no telling when I get back here, But I'm up from here in a moment to get my traveling clothes on, and ready for a too-busy of a day.

See you later!

Striving for a world without Myasthenia Gravis

Monday, July 21, 2008

Big changes comig up!

It's coming down the line. My first infusion at the for now nameless infusion center in Jonesboro except the name of the hospital, St. Bernard. A week from today, Monday, the 28th. Call it big time nervous time. There is not one thing to know to expect other than that they begin it at 8 a.m. Do they do the paper work after I get there, after, or is it already done with information from Cauli's office? Ahaaa... maybe we could find out more while we are over there tomorrow. That is when I am having my two spinal MRIs, and my blood work.

Jim just mentioned checking how much he might be able he could do before hand while there tomorrow. He wanted to see how much of the paperwork registration he could get done for the infusion center. That would be nice. I'd love to see it. To actually see *and* talk to one of the nurses would be even better, but . . . I think I'll feel much better after just going to get the MRIs and lab work done. Soon it will feel as comfortable as it became at St. Francis - Bartlett. I'll take my little red camera, wear my sharp red sunglasses, and take down all I can. It's movin' on time for now, though, but I'll be back as soon as I can be, and hopefully with more, and good news of comfort.

Striving for a world without Myasthenia Gravis

I accidently copied this twice in some places, so if you read doubled, sorry. That is just one, or two, or however many places I missed cleaning it up.

Friday, July 18, 2008

Keeping up with doctors and blogging

My computer has been so rebellious that it just totally rebooted, wiping out everything I had backed up, too, so I have decided not to take it personal, and look at it that my body needed to rest because every time I've tried to update on our new neurologist's appointment the other day, my mind, body, and everything would just shut down, and I would indulge in a game or two of mahjong for relaxation. It continues to amaze me after these years that it is NOT the day of activity, but the day/s following that hit me the hardest. I'm still a bit weak and fatigued today, depending on my stamina, and how many mahjong games I have to plan to relax. Let's pray this is going to be a good day for posting. I've collected much to write about, if not here, at least in two or more entries to begin back at Wednesday with our new doctor's appointment. He is Dr. Cauli (just think of cauli-flower), neurologist, Jonesboro, Arkansas. He is my doctor associating me with the infusion center where I will now receive my IVIG treatments at the St. Bernard's Hospital.

First of all, a new doctor. It all boils down to our receiving word one day that St. Francis - Barlett said that they could not treat me for the IVIG any longer. Old news: Jim got busy, and soon found there was an out-patient facility in Jonesboro, and through contacts made during his career of 26 years in this area, was in touch with one the very next day. Follow-up calls was next in the making. [ Contact information skipped at this time for brevity ] I needed a local, Jonesboro, doctor overseeing me there for the center, and Dr. Cauli's name was given. That is who we went to see last Wednesday, though we had been told the neurologists' were full, not seeing new patients. He agreed to see me. Probably because I was a transfer patient, and did not need to be worked up from ground up.

During the appointment, we got the impression he was not satisfied with the records of treatment he received from my Memphis neurologist, and ordered some tests, and probable medication additions, one of which I've been curious about, Imuran. Cellcept has also been a wonder of mine, but I believe, without looking it up just this moment, there seems to be a problem associated with it. Forget it, let's look at Imuran, and run with it! Not here and now, but in the insuing days, because I have never delved into it other than anecdotal stories. I want to know more than that.

WHEW! Now come all the changes. A year of inpatient, now switches to outpatient. What's it gonna be like? Like on CNN, here's what we know:
  1. Infusion begins at 8:00 a.m. each morning
  2. Begins where we left off at 12.5 ml/hr
  3. Lasts for five days a week - yep, 8:00 a.m. every morning Monday through Friday - that's at least an hour trip every morning, and to be ready for the infusion at 8:00 a.m. oh....... my!
  4. Dr. Cauli told us to ask about some annex rooms the hospital has for continued treatment care patients to help on their stress and expenses.
  5. Jim called Eric (I won't give his full name because he might be embarrassed to give his full name since he knows Jim, heh heh) to find out what he knows. Eric gave Jim the number to call, after Eric gave us liberty to stay with him and his family that week. Ohhhh... he just doesn't know, does he? Potty chair, et al? hahaha Getting me up and out to arrive by 8:00 a.m.? No easy feat here, much lest someone else's house.
  6. Okay, so Eric relented with info about the annex rooms. $45 / night. Not bad considering the cost of gas (have you seen those pictures of Dubai? Out of sight, but they aren't really because they can be seen from outer space!). What would the cost of driving back and forth for 50 miles five days be? That's 100 miles per day. That $45 is sounding cheaper and cheaper. These emails that circulate that slam SUVs do not take in consideration people like us that need that a van to transport a wheel chair. Don't believe a small car would beging to suffice.
  7. Jim called the number Eric gave to him, and in no time he had reservations for us with an annex room for Monday night through Thursday nighe t. We still will have to be there at the infusion center to begin by 8;00 Monday, so that will mean leaving here by 6:30, or maybe earlier. We will probably hear from them next week concerning the paperwork to get filled out, especially if they are going to begin at 8;00. I'm wishing they would get records from St. Francis with details of my other treatments, especially the one when I became unconscious, and was headed to Intensive Care Unit because they could not waken me. I just remembered that we forgot to to tell Dr. Cauli about that, but maybe that was in the notes from Dr. Saeed. Maybe so.
  8. Okay, Dr. Cauli(flower) wants to go with Imura provided it is okay with my rheumatologist, Dr. Jane Alansadrodus in Memphis, TN (remember I am in Arkansas) . Just one slight problem. Upon making an attempt for an appointment to see her first (Dr. Cauli(flower's request)), we find out that she has retired. I told Jim that must have been why she gave me "freedom unless I needed her" because she must have known then she was retiring. Now, we have to let Dr. Cauli(flower) know. Maybe he will have a suggestion of one in Jonesboro, or go ahead and start the Imuran. We will just have to sit back with our feet proped up, and wait see next week after we've had a chance to talk with him or Sandy.
  9. The MRis are for my back, thoracic and lumbar. Why? Later on. Jim to just got me straight on the when. You can see how bad my attention and my memory are. Wonder which comes first? Do I hear (you have my attention), and then not remember? Or do I not hear (could be several reasons), so there is no way for me to have known in the first place. My guess in this scenario is that *I* heard, but without my full attention, therefore when talking to Jim, and he told me when the appointments for them and the blood work - I didn't mention this before now? Are you sure? Look carefully above, and make sure there is no mention of the lab work. Now, if you insist, I'll let it go - this time. Besides, I'm gettin tired of discussing this with you, I've lost my train of thought, and have decided, it just isn't worth knowing how it all went down. So, dear reader of mine, chalk that up to one win for you. I'm so proud for you. I know Jim is thinking to himself, "See what I have to put up with you all?"

So, where are we on what we know? Doesn't sound like much does it? Doesn't sound like much to me either. However, I could tell by the way he accepted the answers to his questions that he was moving along on the same pages with me medically in a way tha made me feel comfortable with him. I especially thought so whenever I found out Dr. Saeed had not sent all of my records, only those from 2007, when I actually started seeing him in 2006. Interesting fact to ponder. My idea? I don't think Dr. Saeed thought I had MG when I went to him from Dr. Constance Smith's diagnosis, when it was very obvious from the tests that she had done. When I told Dr. Saeed what tests she wanted done, he gave a reason for not doing it. She had tests done by a neuro-ophthalmologist which also confirmed the diagnosis. He also did a Visual Field peculiar to his field. Dr. Neuro-Ophtho. Well, wouldn't you know it. Some of my text got wiped out. Wonder if this is a mouse problem or what? Anyway, his tests were positive for ptosis, and other findings which I cannot remember which at this moment, and not relative to this post. But, Connie told them, "I have known Billie Wages a long time, and this is not the way she looks."

Readers, I have pictures of me when my vision was drastically impaired. Now this is with ptosis, not sight. My sight is 20/20 because I have implanted lens post cataract surgery. I am using a different computer, and do not have everything at my disposal today, and if I have time, I will try to find the pictures I need on the other computer. But, to draw it to a close, Connie did all she should have done when faced with the symptoms of Myasthenia Gravis. In fact, she had asked me some MG relative questions at my appointment prior to that one, but since none of the big-town doctors had not sought that out, she thought maybe she was jumping to conclusions too soon due to our friendship. She even said to me that she would leave it to *them*, and I know she sent letters to some of *them*. Nothing was ever mentioned of it to me. I saw her letter in my chart there. My next appointment? There was no denying it, and she took steps on her own for the neuro-opthal testing, and examination of my eyes. Hahaha.... there was not much muscle use of my eyelids by that time. Not much vision, either, but just to show you one side of my friend Connie, she said, "I will send all of my findings to your doctors in Memphis for them to have to use in your treatment. She was not looking for vain-glory. She didn't get it, either, just the opposite, especially on, but she helped get me started on the right tract for treatment for myasthenia gravis, and better days ahead, though not the best ones. There is going to be getter ones though, as we gain some control. Control? Remission? No matter to me, just let me get better, and not have to lie in this bed all of the time. I have things to do, places to go. During his examination, Wednesday. Bummer. I could not lift my left leg at all, and I tried and tried until he said, "That's okay." Then, when trying to do the things with my right hand/arm, it set off the tremoring with that arm/hand, and Dr. Cauli(flower) had to stop it himself.

I referred to some blood work to be done. It is just routine blood work normally done with patients with my autoimmune diseases, and also taking the same or similar medications that I do. No biggy; just making sure things are on the right track.

Well, that is just about all for my appointment with my new neurologist, Dr. Cauli(flower), in Jonesboro, Arkansas, and I am looking for the changes that are about to take place, even though changes, and new things do make me nervous. It was a nice amicable doctor and office. Sandy, his nurse, encouraged us to let them know if we have a problem because if they do not know about it, there is nothing they can do to fix it. It is that philosophy that encourages me to contact them Monday about Dr. Jane's retirement. Julie worked the front desk, and enough good cannot be said of her while she worked around our canceling and rescheduling due to different causes.

Following my appointment with Dr. Cauli(flower) we drove over to Turtlecreek Mall, and on the way decided (I think that is when it was) to snack at the Food Court, and then if we'd stayed long enough to get a good meal after our sojourn there. Ummm... just how long is a sojourn? At least for us, it was long enough that we did not ate beyond the Food Court, and I do not tell what I ate from Scape Escape, but I did not eat it all. There. Conscious appeased.

From there I went to Francesca's, and Jim first went to the benches out front, but they got too hard, and Jim came in to tell me he was going to those oh-so-comfortable-chairs at Barnes & Noble. He said he was afraid of dozing off to sleep, so he got a book and pretended to be reading it in case he did so he *might* not embarrass himself. Himself? What about me whenever *I* should walk up? Do I know this gentleman. Gentle, that is for sure in his state of repose. I strolled around a bit, and in doing so found Emily Griffin's latest book, "Love the One You're With," that Manic Mom featured on her blog recently, and whom I signed up to be on her mailing list. Had it not been for Manic featuring her, I never would have noticed it, not because Emily is not a good writer (I've never read one of her books, only a partial on Manic's blog), but I love her jacket covers, and their continuity. Aww... I really love the pastels.

I've put the wagon before the horse, though. I didn't go into B&N until I had spent a little an exorbitance amount of time in MY litle shop - little only on the outside. Full of all that could please a lady on the inside. I got my red purse there a while back. I try to keep my purchases around a certain so that I won't start having to pass it up one day because of spending too much in there. It is hard because all the things in there are so cute. I dread their Christmas stock being put out!-

RED! I had to get something RED. I was needing to get sunglasses the next time I was out because of my photosensitivity. After strolling through the out-of-this-world-jewelry, and was going by the sunglasses, I stopped to look at them again as I usually do, and WHAT do I see up at the top, just barely in my reach? Three - 3 - pair of RED sunglasses after a pair of black ones had been too small, I stretched for a pair, and behold -- the first pair I managed to get down . . . . YaY it fit! My RED camera, and I missed my picture! But I left the store wearing them. I also left with a cute little glass frame perfect for Alexander's picture, a little metal case just right for my ID/insurance cards, and my eye implant cards when I find them, too. There was something else, but I forgot, or maybe it was what I put back to stay within my limit.

And I am leaving you now with them on the table nearby. If I find things differently after posting this, I'll post corrections. This was a lot of information.

Striving for a world without Myasthenia Gravis

Wednesday, July 16, 2008

Overwhelmed with blogging

That really should read "Overwhelmed with doctors' appointments." We went to my appointment with the new neurologist in Jonesboro yesterday. It was a good one, and my plans were to write about it last night. I was not tired, or at least I didn't think I was. Jim and I had a nice time at the mall (count me one for that), but before starting to write about that, I had to check out some blogs. Ummm what do you think? Evidently my body thought otherwise about the day. We had to leave here at 8:00 a.m., and then afterwards we spent some time at Turtlecreek Mall, first at the food court, then I at Francesca's, and he at Barnes & Noble. Starbucks, then home.

I finally got me some sunglasses, seeing that I am photosensitive, and this beautiful sunlight has been quite bright lately. Wonder if it would work toward my southern exposure living room window? Think I will try it later. Oh, they are a nice red. Matches just about everything else I have. All the red stuff, I mean. I just tried them, and I think they may work with my laptop monitor. WooHoo, how nice would that be?

Anyway, I got started here, and the next thing I know it is morning, today. I have fought with a headache all day, and have now canceled a hair appointment since unable to get rid of it. A nap sounds good, or just plain relaxing with some mail or blogging. Ah, no, I think maybe some graphic work, now THAT does sound good; I'll move some photos from the other computer.

I'll be back later.

Striving for a world without Myasthenia Gravis

Tuesday, July 15, 2008

Ode to George

Ode to George

by Debbie Simmons
Guest writer and Mom to George

What can you possibly say about George that hasn't already been said about the great leaders, voyagers, soldiers and the all-around greatness from the past and present?? He has the heart of a lion, the stubbornness of a mule, the mind set of a gladiator, the humor of a clown and the loyalty that surpasses anything known to man; he is uniquely GEORGE!! Quoted as the "only man I will ever need" and never fails to hold up to that title. He is fearless, relentless, gentle, compassionate and always forgiving. He is my GEORGE and I will never get over him!!

Monday, July 14, 2008

Looking over the last six months of treatment and of blogging

I stated at the very beginning when I set up my blog that there would be bumps in the road, and there have been. There has also been joy! It is late, but I want to take a look at this. When I started blogging, I had been doing the IVIG since May 4th; the date of my first blog was December 12th. I started over, and over, it taking me forever to get it published that first time. First, I had to come up with a name for it. I involved Jim and Ashley in that while we were coming home from Jonesboro one night. Ashley was the one to come up with the first part of the name, and I came up up with the ending. It was to be about my life before I got married, and the early years before the kids could remember all that went on, especially in Turkey, Oklahoma, and Utah. Family stories was to be the main focus.

So, how did MG get into the mix? Honestly? I do not know. Gradually, I think. At least by the time I went through the creating stage, and filled out the About Me, and the top bar, I had added the MG and drummed up the Road to Remission, and added the Ragdoll, and . . .
well here we are today. Primarily MG, and family stories secondary. Well, MG on a daily basis actually, detailing it along with the IVIG and its side effects, unless prevented by sleep or something of the sorts as has been the case this past week as I have needed extra sleep for the MG. So, here we are fairly perky, much less pain, though I do tire quickly if I get out of my realm too much.

Did I say sleep? That is exactly what happened to me last night, and why this did not get finished. Then when I tried to get started this morning, I could not figure out what was wrong, and why I had no pictures in my Windows Photo Gallery, that was the first I remembered they are all on the other computer, and I need to move them via my external hard drive. Sounds like a busy day on the computer.

Plus, I have an appointment with the new neurologist in Jonesboro tomorrow, and all systems seem to be go for that, though I do dread going to a new doctor. That always stresses me out. You have to give them all this past information, and then the neuro exam. Look up, over here, there, follow my pen, ugh, this, that. I hope it's not too much. Just need him to be able to have a doctor there in town to be able to go to the treatment center. At least I hope it is all that is needed. All these years, I am soooo tired of doctors' appointments. After this one, I'm still needing one with Gubin, and I am*really* needing that one, and he is not new. He did all of my lithotripsies, and Jim's cancer surgery. He also addresses my incontinence, and urinary tract infections. He is a good urologist. We are going to try for one appointment at the same name for only one trip.

One of the biggest advances in the past six months is my digital graphics. Couldn't do all of this six months ago, and it feels good to be back at it. There is still quite a ways to go, but at least I am producing some.

It is noon time, and I have much to do, so it is best to close this, and get this day a-rollin'-along, moving files, and reading blogs.

Striving for a world without Myasthenia Gravis

Saturday, July 12, 2008

From softball to cheerleading

Click on this picture for the full newspaper article picture.
Ahem, and a better look at Christen.

Her mama ended up with bum knees from cheer leading in junior high, 9th grade. This summer Christen got hit in the face during softball.
What next?
Tumbling over bushes?

Striving for a world without Myasthenia Gravis

Thursday, July 10, 2008

The fate of the carpetbags is at stake today.

Will they be set up for repacking, or will they be emptied, folded, and put away to be used only as needed?

The first sign that it was time to be going away for a week to St. Francis - Bartlett Hospital for an IVIG treatment, and any Myasthenia Gravis escalation problems was when I would pull out the carpetbags. Missie noted the bags just as soon as I got them out and began packing them. This picture was made just shortly after I started packing one month. The rug was beside my bed, and when I looked down, there she was, never leaving me until time to leave for Memphis. This became a regular happenstance each month. Missie suffers from attachment disorder, and all of this is very troubling for her. If it goes much further once we are settled in a new routine, I think it will be time for her to see the vet about something for anxiety. I'm about ready to start her on some xanax as it is already. Poor baby is so miserable. And she is my baby even if she is almost six years old. I raised her and Callie from weeks old, and on a bottle. Jim and I have our Feline Clinical Psychologist shingle hanging out our front door, along with other feline specialties. With our four, we have at least four personalities, and maybe more, depending on the weather, or any other changing malady.

Now that we are looking at the probability of using the infusion center at St. Benard Hospital, Jonesboro, on an outpatient basis, I will not be repacking the carpetbags every four weeks. Maybe this will help my little Missie. Poor baby. Callie? Just give her the spot in my rocker with the sun shining in, and she is quite happy. It won't be long before she is down for a Callie-sized nap. . . say like all day long.

I guess that pretty well determines the fate of the carpetbags. Special occasions, as needed, which pleases me since they are special, handmade bags.

Striving for a world without Myasthenia Gravis

Wednesday, July 9, 2008

Changes taking place

I've been talking about making some changes to my layout for several months now, but with all that has been going on, I haven't been able to turn loose and spend the amount of time needed for trial and error testing. All of a sudden I have found myself with all I needed to get started on that today . . . no, that is yesterday now.

Nothing has gone according to our plans today and tomorrow.

First of all, we've had to upgrade our printer to go with everything. I understand a patch is due out for our printer soon, but we just went wireless and networked with the printer now. It had been networked before, but not wireless. This will mean I can use it straight from my bed here! It fits nicely on my over-bed table. So, yesterday they deliver the printer, set it up, and make sure everything is in A-1 shape to go! I have repeated since 1986 when we learned that stress is stress is stress - good or bad. So, what did the excitement of the new printer do to or for nerdy ole me yesterday? Now this is excitement that would have the monkeys swinging from the chandeliers. Did I say "nerdy?" That was one toy for me, and one, the box, for Callie. My excitement sent me into a tailspin of a crisis last night. I would sleep, wake, sleep, wake myself with moaning, my legs hurting more and more by the hour, and really, really weak.

Poor Darling Jim. On top of his post-operative state, he picked up a virus. He started feeling bad yesterday, but oh, bless his heart, he really looked bad this morning. There was no doubt he could not make the trip to Jonesboro for the appointment with the new neurologist. He called Mark to take me, but I was in no shape to go, either. We just decided to take our chances that the doctor would not give up on us, and canceled my appointment with him yet again. It seems everything went well, and we will reschedule.

So, he with his virus, and I with my MG, we settled in for a long winter's nap while.

But what about Gubin's appointment for tomorrow? Again, we will have to reschedule. They called to remind me of my appointment before Jim could call them, so that got taken care of. The infection, and all accompanying it is better, so it is more tolerable, and favorable for extending the wait while we each get better. Plus, I am still taking the sulfa antibiotic that seems to be helping.

I think this is a good time to be off and play a little Mahjong for a while, and to look about for working on my layout. Callie will just nap.

Striving for a world without Myasthenia Gravis

Tuesday, July 8, 2008


  • a gloomy state of mind
  • sober thoughtfulness; pensiveness
  • despondency
  • depression, despair, desperation, gloom, misery, sadness
  • hopelessness
Which of the above suits me? I hate to think that any of them do, but at least one must, for everything seems to be so wrong, and it's dragging me along, and I feel myself becoming mired in a bog of these miserable feelings. Feelings that I do not want nor welcome. Thinking about it, I think hopelessness might be at the root of things right now. I was looking around, and ended up with heavy-heartedness, and I think that really seems to fit me best with "a feeling or spell of dismally low spirits." I know that "this too shall pass," but I want it gone NOW!

I just feel too *heavy* to do anything of my own volition to help myself up and out of this mire. Sure, several things are out of kilter right now, but so what? It's definitely not the first time, and nothing is so bad for me to be like this. Okay, I've judged, and analyzed myself, gotten the technical stuff out of the way, now what? Something has calmed my feelings since I decided to just write as I cried, or is that cry as I wrote, or does it really matter? I think not.

I'll tell you something I am realizing, and that is I can feel all the internet people I know in a cyber kind of way, and it feels like a huge, humongous fellowship, or support group, or whatever you'd like to call it. Not a single one of them knows of my feelings right now, so it's not that anyone has given me any feedback on my feelings. Is it the power of friendship? Or blogship? Or support group-ship? There are all my friends in the diabetic support newsgroup which have developed over several years, and now all of the ones I have met through "the world of blog,"one of the neatest places I have ever been. There has been a plethora of different kinds of people I have come in contact with through "the world of blog." It is mostly *safe* to become a cyber friend. Do we form these friendships because most - or some - everyone drops the veil, and exposes things about themselves because they can safely remain anonymous, allowing us to get to know who we really are. Well, with exceptions of course, and does it really matter whether those with whom we make contact are actually 100% truthful or not, they at least have created a person whom we like, with whom we connect. Maybe we, ourselves, throw in a bit of idealism to our own identities. I do not consciously do it, but who knows, maybe sometimes there is a bit of fictional character of whom I wish I was or wasn't, but I really do strive to be honest.

Back from my side trip, where I have meandered. Typical. What is behind my feelings of drudgery? Has it only been like this since Friday night? I am so childish. They definitely should put on my tombstone, "She never grew up." Am I letting my material things take the place of the *body* I have lost? There they roll. Both eyes, right down my cheeks. I'd like to think something is amiss to make accepting *the loss* easier, more mature, adult-like. We use the strangest things to replace, or to cope with our losses. I've got to stop the crying, though.

I really think part of my problem is readjusting to getting back home. We are not where we were before we left here June 11th, in more ways than one. I was just thinking of how we were then. What do we have to do? How long will it take? Uh, oh. I think I touched on my problem. I am feeling like I have lost more than the Casio.

The sun is coming up. A new day is dawning. I'm looking forward to seeing what it will bring to me, and I to it.

Striving for a world without Myasthenia Gravis

Monday, July 7, 2008

One week after the IVIG

I notice that according to my recent keyword activity log that what has brought people to my site the most has been IVIG, IVIG side effects, and living with myasthenia gravis. Looking at "living with myasthenia gravis" this morning, it is nearing noon, and I have had breakfast, and Jim has given me my bath. Lying here reading blogs, and other internet activity has also been a part of my morning. I took 16 mg of mestinon early, then took the rest of my meds, including the marinol, later. Meds are not done for the day. Marinol will be due at lunch, and then there will be nighttime meds. I am having some choking today, so I will need to pay close attention to that, and taking the mestinon. Focusing on my eyesight is not the only thing to consider. I must keep the chewing, swallowing, etc., in check, too.

Exactly one week past the completion of the IVIG, I think I can say things are still moving along at a better than before pace with it. My legs are still a no-go, actually worse, and there is reason to believe they are affected, not only by the MG, but also by neuropathy, medication, or questionable mini strokes. It could be one or all of the above, but we cannot go to finding out until we get the MG under control. I have had to start using the bedside potty chair because I cannot make it to the bathroom about ten feet away.

Not only do I not walk at all now, but I also do not stand. I am in about a two-step area from my bed. Bed to bedside potty. Steps to my chair. Two steps to my rocking chair. Someone needs to right there, though, usually holding on, or me holding on to something at hand, but I have read this is not good. For two steps, and knowing what I am using to brace myself, I don't think it is a problem here. To put it in perspective, I tend to be a risk taker, and in the past would have had no trouble risking a few steps because I felt I knew "I can do it," and would not push myself too far. I knew the warning feelings. Well, that is where I am now. My legs scare me, and I will not take a chance with them, and if they scare me, then it is time for me to pay attention to them, listen to them. It is important to understand that I can get better, go into remission, and still not walk. Actually, that is when Dr. Saeed said we would begin to work on the legs.

When it was evident last week that my legs are kaput, future unknown, I cried. I cried hard. Several times. Getting into bed is the biggest challenge. We get excited whenever I get my booty to the middle of the bed, and Jim puts my legs up on the bed, giving them a bottle top twist, twisting them until my body lines up in the bed. Actually, my horizontal action is fairly okay. It depends a lot on my arms, and how much support they can give to allow the lower body to move. I've got to get to back to laughing about it more.

I just felt like shouting this week as it seemed we had a better hold on the IVIG side effects. We kept the drip going at 12.5 cc/hr for five days. Slow, yes. Less neck pain and headache, yes! There was still lower leg, ankle, and foot swelling which is still evident today, but much better. It should be back to normal soon. Ha! Just in time maybe for the next infusion at the infusion center.

This has been a good day for me. I hope it has been for you, too.

Baby Ashton's eyes

Striving for a world without Myasthenia Gravis

Saturday, July 5, 2008

Next in store at St. Francis

While I was still down in Admit/Holding, they went ahead to access my portacath. The first thing I did was to tell them what I had been told to tell them, "It takes a 1.5 " needle." Okay, I had done my part. Here comes the first one. First one? I thought the purpose of the port was to eliminate all those sticks, and keep it down to this one stick. My mistake. Uh, my misunderstanding? Aha, now I see why. The first one was a no-go, and then someone else came over to try their hand. It was a repeat, and since the the IVIG would not be ready until Thursday, they decided to just leave it alone until morning.

I was lying up there resting from the day, and these words, "You've got a room," wafted through the hazy mist until it actually became a reality. (For some reason I picture Casper) Huh? What? Me? Really? Me? I've got a room already? Four hours. Excellent. Chris went about piling things on top of me for transport to *My* room. He would drive Oscar up later. He threw a sheet up on the bed as we left for our journey to 3-West, and off we went. I didn't get to see Linnie this time. Missed you Linnie.

It was fun getting upstairs. Room 317. Chris, and whomever it was that came with him (sorry, but too much has happened since then and I cannot remember her name) were light-hearted, Chris with a spring to his step, and a mischievous grin on his face. They were working with the corridor floors so we had to detour through ICU. *That* was when he was acting like he was going to throw that sheet up over me. When we got around to my room, they got my bed unloaded, and Chris got my computer plugged in. I just had them pile everything over on the couch and recliner. That is where my bags stayed for the remainder of the time.

Thursday morning started it all. All being getting my port accessed with a blood return. That is all that got done until shortly before 4:00 p.m., attempting to access my port and get the requisite blood return. "A little stick now," was what I heard so much. Finally, I was just too tired from it all, for in addition to the needle sticks was all the twisting and probing after they got in the port, with them applying pressure on the it after they were in. I told them that since a blood test would be the only use of my veins, that I was okay with going ahead and infusing in a vein, and maybe trying later for the port, but for now, forget it. It seems my port is in fairly deeply Yes, we could try the port later, but I was ready to stop. So, the one last person (to my knowledge) went about to make the attempt. All of a sudden she said, "Don't move!" She was beginning to get a little blood seeping her way down the tubing. This has happened before, so just because we can see it, that doesn't mean it's a sure thing, a done deal, all wrapped up and ready to go, but . . . there it comes! We're in! The IVIG has been ready and just waiting on us. She said, "Let me go get the bag," and left, but quickly, and excitedly she was back to hang it. Time? Exactly 4:00 p.m. Thursday. Off we go! Five days tethered to the pole.

The most notable point of this whole hospitalization was less pain, and less headaches until the last day or two on the IVIG when they did pick up in intensity but the percs and lollies sufficed quite well. No screaming scalawags!
The treatment plan is to keep on with this reduced mestinon that Dr. Saeed and I talked about, and started in the hospital. For how long, I am really not sure. We will be seeing the new neurologist connected with the infusion center in Jonesboro soon, and he may have ideas of his own to throw into the pot. For how long we stay at this level, I have no idea. I guess with each IVIG the effectiveness will be assessed until the doctor feels it is safe to make a reduction in the prednisone. So, I guess it is sit back, relax, and let the IVIG treatments do their thing. I want to get all better tomorrow. That is not reality. It is always the same, though, isn't it. I get to feeling better, have these ideas of what I want to do, what I want to be, who I want to be, then WHAM! down I go again, though I don't think I was down as far I normally am just before treatment, and I'm not all washed out afterwards for a few days after coming home.

It was wonderful the way I got to see so many and say a "good-bye." The 3rd floor, East and West, of St. Francis - Bartlett rocks! I just want to start listing each one, but know I would forget someone . . . without fail, but I am sitting here picturing each individual one, and how great each one was, and of course is, day in and day out without fail. This gives me a really warm feeling, and brings a smile to my face. Now you know they must be pretty remarkable if I can still say this after the way they pierced my port so many times Thursday. I still loved them all, even after that. Ha! Ha! Jokes from that day. In a funny sort of way, it *did* almost get comical.

I hate to close this post. It feels like I am closing a chapter in my life. Guess I am, huh? I have been with these people for over a year, and it just isn't easy at all letting go. Maybe it is best to just say, "I'll see you later."

My room with the bed turned against the wall to accommodate Oscar
Emergency entrance leading to Admissions to check-inER entrance

In Admissions, Evelyn, a great representative for the hospital

Striving for a world without Myasthenia Gravis

Friday, July 4, 2008

The Fourth of July - what's in store for us?

Jim has fixed us a nice breakfast for us - eggs and grits. Doesn't sound too good for you to shout about? We sure like it. Then he gave me a nice bath, clipped nails, lotion, and oh, did it leave me with a better feeling - one in many ways! For one thing, I smell a lot better, Donna Koran style. Hmmmm. When finished, he stopped here to rest with me, and we talked about plans for today. The top of the platter is driving over to Jonesboro to Circuit City. Our printer is not compatible with our computers ~ thanks Vista ~ so we are going printer shopping that will accomidate both of us, without a problem. hahaha

We will see, won't we, but I believe they are out there. . . . Fell asleep before going shopping last night. We have used a 4 - 1 HP printer for three years and have loved it, so we are going after the same thing again. Jim likes to copy, I like to scan, etc. This takes care of both of us!

So, if you live in Jonesboro, Arkansas, we may just see you at Indian Mall Turtlecreekle Mall this afternoon. I'll be the fat woman in my powered chair (this is only if this *Born to Shop* Woman has wandered away from Jim, gotten loose, and am in Heaven's Bliss out in the mall!).

Then what is my cardinal rule? The red camera! I *must* be armoured with my red camera! It is all charged up, too, and has a brand new 2G card in it. Who knows when a blogger moment may come along


Jim just went and looked out. It. Is. Raining.

"So, what," you say? Unless extremely important, it is next to impossible for us to get out - talking about for leisure here, you know, but we *have* had to cancel doctor's appointments due to the rain.

Here's the scoop. Our home is set way back from the street. You see in the picture how far I have to go to get from the care to the building. There is that part. Then there is Jim. You know how sugar is. I'm just so afraid that he will melt should he ever get wet, sugar melts - smacky, smacky, Baby Cakes. Naw, I'm just fooling with you here, but seriously, now. While he is getting the ramps in and out of the Expedition, he gets more than just a little damp - he get soaked. Therefore - you know why they use the word "therefore" don't you? It's to warn you that what is coming up was put *there* *for* something important, so perk up the senses, and be prepared to pay close attention to it - I repeat, therefore, with the sprinkle, sprinkle of droplets from the sky, we do not get me out and about.

See how quickly our plans can change (hasn't happened yet)? We were going. Jim had picked my clothes out. YaY! We found some; some we both loved. He was resting. We were doing all the right things to keep everything calm, cool, and collected. Rest, rest, rest when needed for either of us. I have not found the stone, yet, where it is written that we have to go over there this afternoon. We've just been waiting for me to get out of the hospital to go printer shopping. *Anytime* there is shopping to be done in *this* neighborhood, I'm for pulling out the plugs only, my *spark plugs* are not working as well as they used to.


Jim thinks that it is a GO for Jonesboro. Will it be Office Max or Circuit?

We'll see.

Till Later

Striving for a world without Myasthenia Gravis

Wednesday, July 2, 2008

It's time to go home, so how did it go?

I've been here a week now, so how did it go. Surely I cannot tell all about it in one post. I'll just tell about how anxious I am to be going home today. NOT because of anything bad, but just because I am tired of being away from home. It has been GREAT being around the people that I have grown to love so much on the 3rd floor of St. Francis Hospital - Bartlett. I wish I could put every picture I have up here I would, but it would take up so much space, and there are some I did not get a picture of, so some would be left out, and that would not be fair, and, and, and, well you see how it would go. Fair is only fair. Each one up here is just supurb, and that is no exaggeration. I could give out Torch of Excellence Award cards for everyone up here; they are all so awsome.

It started in Admit/Holding - No, it began shortly after coming in the door. There was Evelyn from Admissions who gave me a warm greeting, and then several others that Jim and I both knew who stopped to speak to us. Time passed, though, and unfortunately, they informed us they could not find my orders, so we waited while the doctor's office faxed over yet another time, copies of my orders. As Jim, Jimbo, and I continued to wait, : : : groan : : : who should appear but none other than Jane Garret. We chit-chatted for a while. I was truly exhausted, Jane made sure I had a hospital bed in my room in Holding. Aaaah, to get out of Oscar, and to lay my body down. Thank you Jane.

They were all so -is the word nice?- in trying to access my port. Getting in and being able to flush it seemed to be no problem. It was being able to draw blood that gave them the problem. I mean a BIG problem. They stuck and restuck, and oh, restuck me! And guess who had their camera at ready!! Yep! I got the picture of BLOOD RETURN!! One handed!

Treatment. You know I was experimenting with the mestinon before I came in, and was going to broach Dr. Saeed about reducing it, or cutting it, or *something* or other with it by the time I was coming out of here. I started talking to each person who came in, and each would say "You have to see Dr. Saeed about that," and okay, that was fine, but Dr. Saeed never came by until after the weekend, so I had to wait and wait for him. Grrr.

I guess the wait was good, though, because he got to see what going totally without it was like for me for almost a week, and he had a good solid look at what it would be like to cut way back on it. Good news! Not only did he see what I *thought* I saw, but he also mapped out a plan for the road ahead in cutting back toward remission. Contained within was the word - shhhh now, very carefully say prednisone! Yep, he said starting to cut back on the prednisone after all this time. Oh, could anything ever be so wonderful! I know it's not right away, but it at least is being considered now.

Jim's cancer is gone. The chart to my remission or control or whatever name you want to put to it is in sharper focus. Sounds great for us!

If things go as we think they are going to, the next treatment will not be here, but in Jonesboro at the infusion center. I've told Jim and Dr. Saeed that I do not want to change. No choice. But sometimes change is good.

We'll see.

More on this past week later. I hope I can get it posted before I forget it all. It really has been a good week. I think I even found some new! future in the blog world, too.

We'll see.

I'm getting this posted before the sun goes down. Hey! I'm getting it posted before lunch time. Two entries are getting posted before lunch time. If I try I might get better than squeezing my posting in late at night in the middle of the night.

Striving for a world without Myasthenia Gravis