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

No comments: