It has been one long hard day (Fri). Up early , and on the road to Bapthist Hospital Memphis.
So I was saying when I fell off to sleep, waking at 8:00 this morning, Saturday. I didn't get very far did I? Thursday had been my appointment in Jonesboro with Dr. Cauli, a one hour trip. Friday, then was this trip to Memphis for the blasting of the and we had to be there at 8:00! That was a one and a half hour to two hour trip sailing down the mighty muddy Mississippi.
Now then, throw in an MG bulbar experience. I got very hot from Cauli's to O'Charlie's, ^too^ hot! You see, it's like this. We went to my family reunion a couple of weeks ago, and when we got ready to leave the camp grounds, our air conditioner would not cool. Uh, oh, Spaghetti O's! Jim took it in, and *all* it needed was some freon. Done. $100 worth beautifully done. Awe, no problem, could be worse, right? Right.
I had so much I wanted to talk to Cauli about (don't forget about the neurosurgeon and the back surgery) with what *I* think is an improvement, at least in some areas, the IVIGs, I just couldn't wait to get there!! Another early morning appointment. Hey! There's another improvement. Being able to make some early, and THAT is early, morning appointments. Also not having to cancel as many appointments recently either. We're just doing better, that's all! Toot! Toot! That's me tooting our horn if I had one to toot! Alright, back on the road, and let's get going. This is my first trip I've made since that Saturday. Jim starts the car. Freon doesn't last very long does it? Not a bit of cool air hits me in the face. Told you so, told you so, it could have been worse. I've waited for and wanted this appointment so badly that I didn't mind riding over in the heat (ummm, Ragdoll Billie forgot one of the triggers of an MG episode (increase in symptoms, not a full crisis), overheating, but it's not that hot right now, is it?). So, we have the air, not air conditioning, on, and it really is not that bad.
My appointment goes very well. Lessee, I get my next prescription for my IVIG, and I will begin the imuron right away, as long as the new rheumatologist does not need to see me before I begin it. Hope, oh, how I hope I can go ahead and begin it. I have heard so much about it. Of course, I cannot do that until next Saturday when we are back home because of our not being near our drug store this week. Dr. Cauli is so funny. He talks to Jim rather than me. Next appointment I am going to ask him to speak to me, and why it is important to me for him to do so. He is a small man. His desk looks like it might swallow him. He's very nice, though, and from our experience so far, my impression is that he seems quite smart. Well, he found my rptured disk, didn't he? Oh, yeah. That's something else. He noticed my leg weakness was not typical MG and that was the reason for sending me for the MRIs, thus finding the ruptured disk. More about the disk and taking care of it later, probably in another post.
It was the perfect time for us to go eat when we finished, and we already had plans to go to O'Charley's. Between Cauli's and O'Charlie's I guess I got really heated, or even my excitement in Cauli's office now that I have thought about some things, they were not apropos. Anyway, by the time we got to our table, I could tell I was having some extra bulbar weakness in addition to the overall extremities I was feeling, I chose my dinner, lunch or whatever you may call it wherever you live. One by one, and not two by two as Noah got the animals into the Ark, I eliminated my favs until I was to one I was keeping in the back of my mind that I was fairly certain would be okie dokie, and I *did* need to use it, too. That would be shrimp. I remembered how much I liked their shrimp up in Dayton the last time we were there to visit the kids. I could easily take any size bit necessary. The outside would give me the most problem being crusty, but that could always be dealt with if necessary. Just remove the crust, even if it is so good.
After sharing my last three shrimp with Jim, we finally departed their wonderful AC, and headed for home. Westill have no AC, and have that trip coming up tomorrow.
You can see with what I went into my lithotripsy Friday because rest is the only thing that could help me with the MG, and that is all that was wrong with me. Jim wanted to know if I wanted to cancel it, especially with the heat of the car. But, no, there are too many things going on, intertwined with each other, and the lithotripsy was one of those things. The disk is large and bad is what I understand it to be, and they said it needed to get done as soon as possible. Cauli and Campbell really seem to think the pain and leg weakness will be helped by it. Boy, not half as much as I do.
TOODLES
Striving for a world without Myasthenia Gravis
So I was saying when I fell off to sleep, waking at 8:00 this morning, Saturday. I didn't get very far did I? Thursday had been my appointment in Jonesboro with Dr. Cauli, a one hour trip. Friday, then was this trip to Memphis for the blasting of the and we had to be there at 8:00! That was a one and a half hour to two hour trip sailing down the mighty muddy Mississippi.
Now then, throw in an MG bulbar experience. I got very hot from Cauli's to O'Charlie's, ^too^ hot! You see, it's like this. We went to my family reunion a couple of weeks ago, and when we got ready to leave the camp grounds, our air conditioner would not cool. Uh, oh, Spaghetti O's! Jim took it in, and *all* it needed was some freon. Done. $100 worth beautifully done. Awe, no problem, could be worse, right? Right.
I had so much I wanted to talk to Cauli about (don't forget about the neurosurgeon and the back surgery) with what *I* think is an improvement, at least in some areas, the IVIGs, I just couldn't wait to get there!! Another early morning appointment. Hey! There's another improvement. Being able to make some early, and THAT is early, morning appointments. Also not having to cancel as many appointments recently either. We're just doing better, that's all! Toot! Toot! That's me tooting our horn if I had one to toot! Alright, back on the road, and let's get going. This is my first trip I've made since that Saturday. Jim starts the car. Freon doesn't last very long does it? Not a bit of cool air hits me in the face. Told you so, told you so, it could have been worse. I've waited for and wanted this appointment so badly that I didn't mind riding over in the heat (ummm, Ragdoll Billie forgot one of the triggers of an MG episode (increase in symptoms, not a full crisis), overheating, but it's not that hot right now, is it?). So, we have the air, not air conditioning, on, and it really is not that bad.
My appointment goes very well. Lessee, I get my next prescription for my IVIG, and I will begin the imuron right away, as long as the new rheumatologist does not need to see me before I begin it. Hope, oh, how I hope I can go ahead and begin it. I have heard so much about it. Of course, I cannot do that until next Saturday when we are back home because of our not being near our drug store this week. Dr. Cauli is so funny. He talks to Jim rather than me. Next appointment I am going to ask him to speak to me, and why it is important to me for him to do so. He is a small man. His desk looks like it might swallow him. He's very nice, though, and from our experience so far, my impression is that he seems quite smart. Well, he found my rptured disk, didn't he? Oh, yeah. That's something else. He noticed my leg weakness was not typical MG and that was the reason for sending me for the MRIs, thus finding the ruptured disk. More about the disk and taking care of it later, probably in another post.
It was the perfect time for us to go eat when we finished, and we already had plans to go to O'Charley's. Between Cauli's and O'Charlie's I guess I got really heated, or even my excitement in Cauli's office now that I have thought about some things, they were not apropos. Anyway, by the time we got to our table, I could tell I was having some extra bulbar weakness in addition to the overall extremities I was feeling, I chose my dinner, lunch or whatever you may call it wherever you live. One by one, and not two by two as Noah got the animals into the Ark, I eliminated my favs until I was to one I was keeping in the back of my mind that I was fairly certain would be okie dokie, and I *did* need to use it, too. That would be shrimp. I remembered how much I liked their shrimp up in Dayton the last time we were there to visit the kids. I could easily take any size bit necessary. The outside would give me the most problem being crusty, but that could always be dealt with if necessary. Just remove the crust, even if it is so good.
After sharing my last three shrimp with Jim, we finally departed their wonderful AC, and headed for home. Westill have no AC, and have that trip coming up tomorrow.
You can see with what I went into my lithotripsy Friday because rest is the only thing that could help me with the MG, and that is all that was wrong with me. Jim wanted to know if I wanted to cancel it, especially with the heat of the car. But, no, there are too many things going on, intertwined with each other, and the lithotripsy was one of those things. The disk is large and bad is what I understand it to be, and they said it needed to get done as soon as possible. Cauli and Campbell really seem to think the pain and leg weakness will be helped by it. Boy, not half as much as I do.
TOODLES
Striving for a world without Myasthenia Gravis
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