Headaches. BAD headaches! Coming close to *crossing the line* headaches. But before that, we will slow the IVIG down. We put the percocet to work close to 1:00 p.m.; it is now 1:35 p.m., and I am still fighting it (the headache).
Guess the percocet and I did a real job on the head. Roused at 3 something headache free - whee! That and a good nap did wonders. Now, let's keep it that way.
Having some tea I kept from lunch, and some graham crackers right now.
Oh, they are such foolers!! What do they have against a body having a jolly good time?
NOW I remember why I sleep so much during the treatments. Just all of a sudden the headache sneaks around the corner, messing up my merriment, becoming quite a low down scalawag. The thing that gets me the most, is it robs me of my talking game, well, in this case, my writing game, thinking, talking, writing. It snatches my words from me; throws them all about, hiding them hither and yon, confusing me. Not fair! It seems I cannot think. Okay. That's okay for now, but I'll catch up; I usually do. Sometmes too late, though. :(
Seven o'clock shift has come on, Pam came by checking to see if I needed anything. Stocked up on ice and Diet Shastas. My needs are simple. Uh, oh. Last box of grahams. What'll I do? Oh, what'll I do? This is not Jim's buffet here (portion size ;), and there is a real need for in-between meal help. Oh, what I'd give for some of Jim's cream of wheat right now. How many more days of this? How about some pears and cottage cheese. Do I sound hungry to you? I *feel* hungry to me!! The *one* time I didn't bring much extra food with me. I just didn't feel like being bothered by it Sunday when we were packing. Jim asked me, and I waved him off. Wonder if I could have a pizza delivered? Oh, this is not the Holiday Inn? Drats! Wonder what would happed if a patient really did order a pizza? I think I'll ask, and see the next time a nursing staff person walks in - see, the scalaway is stealing my words. Do you think scalawag is a good description for the headache? Low down scalawag at that!
I hope Manic Mom realizes she better enjoy those Dunkin Donuts while she can. They were my most favorite - oh, I need to get out the Thesaurus, and find every word that describes them, yummmm - but now with my diabetes, they are on the no-no list. I *could* have them by covering them with insulin, but that is not the healthy thing to do. Yack! Healthy!! It takes an effort to be healthy, but worth it. Aaaaaahhh.... I want a Dunkin Donut Manic!!! One of your pretty donuts. It's been so many years!
Think I'll let this one go for now. Have taken some pictures, and want to put them up. Also want to check on Manic's blood drive. This was to be her last day for it, I believe.
Toodles
Striving for a world without Myasthenia Gravis
Thursday, February 14, 2008
Wednesday, February 13, 2008
Cyber bird delivery
One bag down, three to go. The pharmacy did it differently this time. Last month we had one big bag that was for the whole time. Now we are back to the daily bags. They tell me there is a new pharmacist. My query. Any improvement? So far, None. Accck! This has been a problem ever since I started getting these. It did not seem like the IVIg was that much a rarety, but last year when my neurologist started me on these, many health professionals were not familiar with them, or at least that did not seem to be the case. I did a lot of searching because I wanted to know what was to be going on with my body, and what to expect. The problem was that the pharmacy changed the way it was administered with each bag they sent up to my third floor domain. It would have my nurses scratching their head in bewilderment sometimes.
Well, here we are again this morning (Wednesday). Dr. Saeed was by and he changed the duration of the IVIg to the five days he told me it would be. My nurse, sweet and thorough Tanya, waited for the instructions from pharmacy before she changed the rate. They told her the rate would not change. Dr. Saeed said if the headaches continue, or worsen, the rate is to be slowed. Guess we'll just have to wait to see how this game plays out.
Dana from Dietary came by to see me this morning. She has always been such a big help to me since my first admission with the swallowing problem. Between her and the speech pathologist, along with the first IVIg treatment, I went home being able to swallow better. I was so happy to tell her my swallowing was *much* improved now, and I do not have to thicken my drinks. It *is* better if my foods are soft for my swallowing, my mouth, gastroparesis, especially the gastroparesis. Cream of wheat, oat meal, and grits are my three main food choices that I can eat at almost any time. Hmmmm wouldn't some of Jim's cream of wheat taste good right about now. My chef-extraordinary can whip up the best pot of cream of wheat at the drop of a hat - maybe just mentioning it to him would be sufficient. How will I ever survive five days here without any of it. I've never heard of cream of wheat withdrawal, but surely there is such a thing. Just the thought of it is making me chew faster on this cracker. What kind of cracker? Surely you jest! Keebler Grahams with cinnamon. They make other kinds?
It is relatively quiet around the hospital right now, so I think what I'm gonna do, find me a good cyber bird to deliver this just in case things might change in the coming hours. I'm not happy that the head and neck aches have begun already. Not what I wanted to see. Doesn't mean they'll continue, nor that they will get worse. I know what I need is something pulling all those positive signals my way, giving me some good antibodies. At least that is what I think they are doing.
The headache. The neck. The shoulders. I forgot about these pains. Worse. They are gone after the IVIg is done, but now. The percocet. The two shall meet. Let the percocet win out over the pain! Three more bags of this? Dr. Saeed told Tanya there will be less medicine - immunoglobulin - in the remaining bags. Maybe that will prevent the pain from worsening. That is how the game will be played.
Going to the land of the percocet. See ya later!
Toodles
Striving for a world without Myasthenia Gravis
Well, here we are again this morning (Wednesday). Dr. Saeed was by and he changed the duration of the IVIg to the five days he told me it would be. My nurse, sweet and thorough Tanya, waited for the instructions from pharmacy before she changed the rate. They told her the rate would not change. Dr. Saeed said if the headaches continue, or worsen, the rate is to be slowed. Guess we'll just have to wait to see how this game plays out.
Dana from Dietary came by to see me this morning. She has always been such a big help to me since my first admission with the swallowing problem. Between her and the speech pathologist, along with the first IVIg treatment, I went home being able to swallow better. I was so happy to tell her my swallowing was *much* improved now, and I do not have to thicken my drinks. It *is* better if my foods are soft for my swallowing, my mouth, gastroparesis, especially the gastroparesis. Cream of wheat, oat meal, and grits are my three main food choices that I can eat at almost any time. Hmmmm wouldn't some of Jim's cream of wheat taste good right about now. My chef-extraordinary can whip up the best pot of cream of wheat at the drop of a hat - maybe just mentioning it to him would be sufficient. How will I ever survive five days here without any of it. I've never heard of cream of wheat withdrawal, but surely there is such a thing. Just the thought of it is making me chew faster on this cracker. What kind of cracker? Surely you jest! Keebler Grahams with cinnamon. They make other kinds?
It is relatively quiet around the hospital right now, so I think what I'm gonna do, find me a good cyber bird to deliver this just in case things might change in the coming hours. I'm not happy that the head and neck aches have begun already. Not what I wanted to see. Doesn't mean they'll continue, nor that they will get worse. I know what I need is something pulling all those positive signals my way, giving me some good antibodies. At least that is what I think they are doing.
The headache. The neck. The shoulders. I forgot about these pains. Worse. They are gone after the IVIg is done, but now. The percocet. The two shall meet. Let the percocet win out over the pain! Three more bags of this? Dr. Saeed told Tanya there will be less medicine - immunoglobulin - in the remaining bags. Maybe that will prevent the pain from worsening. That is how the game will be played.
Going to the land of the percocet. See ya later!
Toodles
Striving for a world without Myasthenia Gravis
Tuesday, February 12, 2008
Room 306
Good morning, good morning. It was a nice night. No, it was a wonderful night, after a busy day of completing my packing, making the trip to the hospital, getting admitted (they couldn’t find my records again - never can), going through the ER (staying in ER bed until 6:00 p.m.), moving to Admin/Holding, then up to my room at 9:30 p.m. YaY! As I was leaving, one of the nurses ask me if I
had been told who my nurse was going to be upstairs; no, they had not. Ernest! Read about him in "I found out one thing," He got my room all set up for me this time, too. I had already unpacked the carpetbags
Evening time. It is hard to believe it. The day has either been a sleepy one or a busy one. Doesn't seem like an in-be-tween one. It has been so good to see everyone. A most welcome sight was Liesl, the nurse practitioner with Dr. Ali. We talked about all that had gone on the past few weeks. Dr. Ali was by here about an hour ago. I told him about Manic Mom's blood drive, and he was all excited about that. He said it was like the souls of more than 1000 people on a journey through my body replacing my immune deficiency helping it to maintain adequate antibodies levels.
IVIg status. The first bag is finished; the second one started about 11:00p.m. It is not going to run the five (5) days that I thought it was going to, rather still the four (4). I have not had an opportunity to talk to Dr. Saeed about that. It is just out of my curiosity as to why he changed his mind. They tell me I have been like that since a little girl. They say that I would ask my paternal grandmother, Nanny, "Why Nanny? Why?" all of the time. "Why" has continued to be a big part of my vocabulary the rest of my life. I've just always been interested in Why and How things worked. Guess that is the reason I keep reading about the IVIg. I keep learning something new each time I have to look up something about it. There should be a Whyfers club.
Vital sign check is over. BP is up due to the IVIg. Headache has started, too. Moderately.
C U later
Tootles
Striving for a world without Myasthenia Gravis

Evening time. It is hard to believe it. The day has either been a sleepy one or a busy one. Doesn't seem like an in-be-tween one. It has been so good to see everyone. A most welcome sight was Liesl, the nurse practitioner with Dr. Ali. We talked about all that had gone on the past few weeks. Dr. Ali was by here about an hour ago. I told him about Manic Mom's blood drive, and he was all excited about that. He said it was like the souls of more than 1000 people on a journey through my body replacing my immune deficiency helping it to maintain adequate antibodies levels.
IVIg status. The first bag is finished; the second one started about 11:00p.m. It is not going to run the five (5) days that I thought it was going to, rather still the four (4). I have not had an opportunity to talk to Dr. Saeed about that. It is just out of my curiosity as to why he changed his mind. They tell me I have been like that since a little girl. They say that I would ask my paternal grandmother, Nanny, "Why Nanny? Why?" all of the time. "Why" has continued to be a big part of my vocabulary the rest of my life. I've just always been interested in Why and How things worked. Guess that is the reason I keep reading about the IVIg. I keep learning something new each time I have to look up something about it. There should be a Whyfers club.
Vital sign check is over. BP is up due to the IVIg. Headache has started, too. Moderately.
C U later
Tootles
Striving for a world without Myasthenia Gravis
Sunday, February 10, 2008
IVIg time is drawing closer
Less than twenty-four (24) hours! I can honestly say I am not nervous this time; I am acctually looking forward to it. ummm... Wonder why the big change all of a sudden when just a few days ago I was having the same *tummy nerves*?
The main thing is finding a blood drive within the blog community. The Blood Drive is hosted by Manic Mommy. ** I Just had to update my post to reflect Manic's Sunday post. Just getting to her site is all you need to do. She takes you by the hand very gracefully.
After my infusion is started I am going to get pictures (will have to get someone on the nursing staff to take the pictures) of my receiving the IVIg product. This is the full circle of the blood donation. Beginning to end of one aspect. It contains the blood of at *least* 1000 blood donors per FDA regulations. I have been receiving these treatments since May. This is the first time I have *met* blood donors to express my appreciation for their part at the very beginning - the donation!
See. Whenever I get in the middle of something like this, I gets "soooooo cited" as one of the kiddos used to say whenever they were little (cannot believe I am beginning to forget who said what ;). And that is me . . . sooooo cited! LOL I just hope I do not have to stay in the ER Admin/Holding area to wait for my room. This is one time it really does matter to me. *vbg* In the past, it has taken pharmacy about eight (8) hours to have the IV prepared and to me. Last month, to last four (4) days, it was in a biiiiig bag, and crept by sooooo slowly! Next week is going to go for five (5) days.
My blood sugar has been difficult to maintain during infusions, so I've been checking out the different IVIg products, and seeing that they are made with and without *sugar* of some kind. A nurse and I checked the IV solution last month, but I did not think to check about the blood product itself. I've been checking the ones at Blood Diagnostics. That would be something if my endo and I have been battling against this each time. Surely, that was checked from the beginning. Dunno. I just found last month's labeling and it was B Braun.
For now . . .
Tootles
Striving for a world without Myasthenia Gravis
The main thing is finding a blood drive within the blog community. The Blood Drive is hosted by Manic Mommy. ** I Just had to update my post to reflect Manic's Sunday post. Just getting to her site is all you need to do. She takes you by the hand very gracefully.
After my infusion is started I am going to get pictures (will have to get someone on the nursing staff to take the pictures) of my receiving the IVIg product. This is the full circle of the blood donation. Beginning to end of one aspect. It contains the blood of at *least* 1000 blood donors per FDA regulations. I have been receiving these treatments since May. This is the first time I have *met* blood donors to express my appreciation for their part at the very beginning - the donation!
See. Whenever I get in the middle of something like this, I gets "soooooo cited" as one of the kiddos used to say whenever they were little (cannot believe I am beginning to forget who said what ;). And that is me . . . sooooo cited! LOL I just hope I do not have to stay in the ER Admin/Holding area to wait for my room. This is one time it really does matter to me. *vbg* In the past, it has taken pharmacy about eight (8) hours to have the IV prepared and to me. Last month, to last four (4) days, it was in a biiiiig bag, and crept by sooooo slowly! Next week is going to go for five (5) days.
My blood sugar has been difficult to maintain during infusions, so I've been checking out the different IVIg products, and seeing that they are made with and without *sugar* of some kind. A nurse and I checked the IV solution last month, but I did not think to check about the blood product itself. I've been checking the ones at Blood Diagnostics. That would be something if my endo and I have been battling against this each time. Surely, that was checked from the beginning. Dunno. I just found last month's labeling and it was B Braun.
For now . . .
Tootles
Striving for a world without Myasthenia Gravis
Thursday, February 7, 2008
Getting ready to grace the doors of St. Francis
Is every month like this? Let's see . . . the last time St. Francis was so lucky to have me was January 14th, then I came home on the 22nd. Now, it is time to go back? Why, just how many *every four weeks* are there each month, anyway? I'm scratching my head . . . NO, not because it itches! I'm thinking. Uh oh, bad sign. It's just that this week out of the month seems to come around so quickly.
Does my Missie Nicole sense I am getting ready to leave again? She has become more attentive the last few days. Right now she is lying on the rug beside my bed. She kept vigilant as long as she could, but now that pretty little head of hers is flat on the floor as she snoozes, resting next to my purse/bag beside my bed. My purses or bags are often her choices of resting places. It amazes me how she knows some things are even mine. Take my carpet bags for example. Guess they have the smell of my clothing that has been in them, but she loves to lie on them. How does she know it is a purse or bag, something that means "go." Jim and I think my going away each month bothers her. She is very attuned to my bad periods, especially the pain that brings the tears, and stays even closer, usually beside me on the bed. The others do not do this. Precious walked by just now. That disturbed her napping. With lowered eyebrows, like "What are you doing over here?" she watched to see what Precious with "What are you up to?" eyes (Precious is twelve; Missie five ;). She is most attentive to anything she thinks pertains to me, anything that might even come near to being close to me - so she thinks! See those tuned-in ears? Jealous? Or what? Once she was satisfied Precious was going to the food and water dishes, she turned her attention back to me. I took pictures then. ;-)
Now let me turn my attention back to my business at hand. . . preparing myself for my trip to the hospital next week. ::sigh:: I get all snuggled in here at home, and before you know it, it is time to go again making it feel like . . . well, I don't know exactly how to explain it, but like maybe there are double the weeks in a month. Can't slow this "Road to Remission" down though, not just yet. That *lump* is in my stomach already. I could name it gastroparesis, but it's with a tightness more associated whenever I think of packing up and leaving Monday morning. I'm sure some of it is the bother of the physical part of it, the packing everything and getting out the front door as with a trip of any kind, minimum of five days. Just that in and of itself is hard enough, but though I can make light of the different aspects of the trip, inside I am really crying "Please, let me stay home." But Medicare doesn't see it that way, and wants to spend the extra money, wants to put me through the extra stress, so what am I to do? Which/what of my inner being am I to choose? What am I to gain from my choice? I have found my countenance to become a reflection that returns multifold; why who wants to be around a grouse?
And, I'm always bringing up songs. How about "Let a Smile be your Umbrella"? It is most worthy, and I don't think Pollyanish as long as you've got both your feet on the ground. No, no. No pun intended here. The soles of my shoes are not even dirty. LOL I believe this is what Dr. Ali wanted to be sure of last month when he asked if I'd mind talking to the hospital psychiatrist, making sure both my feet were firmly planted (I have an area that I have not reconcilled yet :( ) Of course I didn't mind. I've been wanting to see my own psychologist; just haven't made the appointment with all these other ones going on. I passed the test, and I believe I was being as honest with him as I could be. Subconsciously? Who knows? I'm not happy-go-lucky all the time. Dr. Ali has seen me cry, too. Several times. I can have those tears in a moment (they're that close and I'm an easy crier), but I like to be able to hold them until it is a personal moment if possible, but with me, that certainly is not possible, and I've learned to just let them trickle down if they overflow, and keep on going about my business. And dear Liesl, what would I do without you? Knowing all you guys are going to be there makes the *going back* easier to do, going to my home away from home on the third floor. I'd like to identify some of those *tummy feelings* as an excitement feeling at seeing the nursing staff, both in the ER and 3rd floor, for I'm sure I'll be spending Monday night in the Admin/Holding area (no online while there f. That is just about a given anymore. So, see . . . I've got the *nervous* tummy feelings, the *I don't want to go feelings*, the almost gonna cry feelings . . . now how do I behave with all of this? Grumpy grouch grouse? Who benefits from that? Not me. Jim has cancer, and is having robotic prostatectomy surgery March 19th. I'm having a biopsy to rule out pemphigus. What is the paradigm in our home? First of all, we have four cats . . . shh, they think they are people. Maybe Love and Laughter would be the simplest description, and
FUN! I cannot describe the fun we have. It makes me smile while I am typing this, just thinking about some of the silly things we do and say. When a bed is your total environment, you gotta do something. Oh, my. If he were not asleep, I'd be truly laughing out loud at some of my thoughts, so here, this is the most I can give right now . . . LOL
The MG kept me from smiling for so long, and I didn't even know it (grouch did fit as in picture :-( ), and I'm making up for all those frozen faces. It is SO wonderful to feel my face move now,
expressing my inner feelings. This is just one of the results from the IVIg treatments. I do get facial cramps all of a sudden sometimes . . . say like just a few moments ago, that also pull my head backwards at the same time usually. But, they are short lived, and sometimes a bit painful if the cramp is too strong.
I am in charge of my hospital room. It is my comfort zone. Last month some nursing staff barged in, didn't say didly squat, though it was first thing in the morning, about 7:15, woke me with their testing, abrubtly turned knocked things over, walked out of the room. . . still not a word, except from me! She returned after the *partner* she was with who was in the hall said something to her, and picked up whatever it was she knocked over, and righted it, and muttered that the bed covers were on the floor, in the way. I did not complain, but in conversation said something to my nurse. A *we're not going to put up with that kind of attitude on this floor* type of nurse, and left to go take care of the situation. Those two were never in my room again that day. Later in my stay, she came in and was very polite. I think sometimes they forget I am a patient, too. But, there are some basic rules of politeness for anyone, well, everyone really. I had to explain to some of the aides what my disease was all about because "you don't look sick." This is a *real* problem for myasthenics, especially since we can be okay one hour, and way down the next. Jim has been able to get a really good look at it since he has been with me 24/7. He is often a good adviser on what I should and shouldn't do, when I should rest, and sometimes what I should eat, or maybe I should say try to get me to eat - this is a real trial, testy time here. He is learning to pick out my clothes. BIG step for us. Enough for a whole post one day. *s* His understanding of the disease has been making it much more of a team effort now. While I was upright the other day, and able to stand to hug him, I told him "I sure do love us. I really do love our team." And I do. Today I told him I love him more and more each day.
But . . . I have to go.
Tootles
Striving for a world without Myasthena Gravis

Now let me turn my attention back to my business at hand. . . preparing myself for my trip to the hospital next week. ::sigh:: I get all snuggled in here at home, and before you know it, it is time to go again making it feel like . . . well, I don't know exactly how to explain it, but like maybe there are double the weeks in a month. Can't slow this "Road to Remission" down though, not just yet. That *lump* is in my stomach already. I could name it gastroparesis, but it's with a tightness more associated whenever I think of packing up and leaving Monday morning. I'm sure some of it is the bother of the physical part of it, the packing everything and getting out the front door as with a trip of any kind, minimum of five days. Just that in and of itself is hard enough, but though I can make light of the different aspects of the trip, inside I am really crying "Please, let me stay home." But Medicare doesn't see it that way, and wants to spend the extra money, wants to put me through the extra stress, so what am I to do? Which/what of my inner being am I to choose? What am I to gain from my choice? I have found my countenance to become a reflection that returns multifold; why who wants to be around a grouse?
And, I'm always bringing up songs. How about "Let a Smile be your Umbrella"? It is most worthy, and I don't think Pollyanish as long as you've got both your feet on the ground. No, no. No pun intended here. The soles of my shoes are not even dirty. LOL I believe this is what Dr. Ali wanted to be sure of last month when he asked if I'd mind talking to the hospital psychiatrist, making sure both my feet were firmly planted (I have an area that I have not reconcilled yet :( ) Of course I didn't mind. I've been wanting to see my own psychologist; just haven't made the appointment with all these other ones going on. I passed the test, and I believe I was being as honest with him as I could be. Subconsciously? Who knows? I'm not happy-go-lucky all the time. Dr. Ali has seen me cry, too. Several times. I can have those tears in a moment (they're that close and I'm an easy crier), but I like to be able to hold them until it is a personal moment if possible, but with me, that certainly is not possible, and I've learned to just let them trickle down if they overflow, and keep on going about my business. And dear Liesl, what would I do without you? Knowing all you guys are going to be there makes the *going back* easier to do, going to my home away from home on the third floor. I'd like to identify some of those *tummy feelings* as an excitement feeling at seeing the nursing staff, both in the ER and 3rd floor, for I'm sure I'll be spending Monday night in the Admin/Holding area (no online while there f. That is just about a given anymore. So, see . . . I've got the *nervous* tummy feelings, the *I don't want to go feelings*, the almost gonna cry feelings . . . now how do I behave with all of this? Grumpy grouch grouse? Who benefits from that? Not me. Jim has cancer, and is having robotic prostatectomy surgery March 19th. I'm having a biopsy to rule out pemphigus. What is the paradigm in our home? First of all, we have four cats . . . shh, they think they are people. Maybe Love and Laughter would be the simplest description, and

The MG kept me from smiling for so long, and I didn't even know it (grouch did fit as in picture :-( ), and I'm making up for all those frozen faces. It is SO wonderful to feel my face move now,

I am in charge of my hospital room. It is my comfort zone. Last month some nursing staff barged in, didn't say didly squat, though it was first thing in the morning, about 7:15, woke me with their testing, abrubtly turned knocked things over, walked out of the room. . . still not a word, except from me! She returned after the *partner* she was with who was in the hall said something to her, and picked up whatever it was she knocked over, and righted it, and muttered that the bed covers were on the floor, in the way. I did not complain, but in conversation said something to my nurse. A *we're not going to put up with that kind of attitude on this floor* type of nurse, and left to go take care of the situation. Those two were never in my room again that day. Later in my stay, she came in and was very polite. I think sometimes they forget I am a patient, too. But, there are some basic rules of politeness for anyone, well, everyone really. I had to explain to some of the aides what my disease was all about because "you don't look sick." This is a *real* problem for myasthenics, especially since we can be okay one hour, and way down the next. Jim has been able to get a really good look at it since he has been with me 24/7. He is often a good adviser on what I should and shouldn't do, when I should rest, and sometimes what I should eat, or maybe I should say try to get me to eat - this is a real trial, testy time here. He is learning to pick out my clothes. BIG step for us. Enough for a whole post one day. *s* His understanding of the disease has been making it much more of a team effort now. While I was upright the other day, and able to stand to hug him, I told him "I sure do love us. I really do love our team." And I do. Today I told him I love him more and more each day.
But . . . I have to go.
Tootles
Striving for a world without Myasthena Gravis
Wednesday, February 6, 2008
Adventures at the dentist
Like it or not, I had to go to the dentist today. It was for an assessment of what work is going to be needed, so that a biopsy of my mouth would not add pain on top of pain in my mouth. There are five teeth that will need to be pulled, but thank goodness the front ones will be saved. The good news is that this can wait until after the biopsy is done. He was going to be calling Dr. Naidu this afternoon with his report.
That was the general information. Now to what all is going on. One of the autoimmune diseases that I have is Sjogren's (Show-grins) and one of the effects of it is dental decay, and I mean it happens fast. First, I had several root canals one right after another. The dentist that did them asked if i ate a lot of sweets. Nope. No known cause, and then the dry mouth came to light. It was not long before my teeth, one by one, started turning black, and breaking off even with my gum line. Hey! What gives. I've never had perfect teeth, but I've always had *good* teeth.Not pretty, but *good* ones. Now look at the mess in my mouth. My dentist said I needed to go to a diabetic dentist. Okay. Haven't made it there yet, but my teeth have stopped breaking. Wonder if it is the moister mouth due to the side effects of the Mestinon for the MG? Timeline is just about right for it. It's a good probability isn't it. Let's go with it!
Van's secretary called and asked us not to come until about 2:00 because he would have to help Jim get the wheel chair inside. Since we were all ready to go, we figured we could wait in his office as well as right here, so we went on up there. Uh oh. No way could we get into that building, even with our wooden ramps. They would be too short. I just felt like I could walk that distance with my walker, so we went back to the house to get it.
Ahhhh..... Look at me..... Just walking along, singing a song..... nah, I didn't really sing, just feel like singing now. But I did make it out, and up the steps, and barely to the first chair in the waiting room. I could feel my legs beginning to give way just before I sat down. That was the most welcomed chair I have ever seen.
I go back to the exam room. Ease my way down on the comfy looking lounge chair (remember my view of things tend to be distorted since I am in a hospital bed 24/7 ;). Van comes in, Jim explains what is going on, and he takes a look at my mouth, and then does some cleaning. He explains I have five teeth that need extracting, but is not urgent, and we can approach it slowly.
Van was getting ready to smooth down a sharp tooth that was irritating one part of the inside of my jaw. The glasses were to protect my eyes. He told me before he started that it was going to be a little bit loud, and my smart sweetie, said he thought..... but did not say, "She won't hear it, she's hard of hearing." Since he did such a good job of taking pictures, I'll let him slide, and get by with that this time. He's right, though. It wasn't loud at all to me. It was great to get that tooth smoothed; I was raving about it as we left the clinic!

After Van got finished doing what he needed to do with the teeth, he said he wanted to take a couple of x-rays to make sure he wasn't missing anything going on beneath the surface. No pictures. Jim had to step outside the room for that. Well, if I had realized just how extremely important these pictures were going to be, I would have insisted that he put on a lead apron, and get shots of Van putting the little x-ray thingies in my mouth, but as usual, I didn't think. ;-/

After taking two shots of my mouth, Van said he wanted to do an x-ray that goes around my head. Problem. It was about a ten foot walk down to the little room where that machine was located. Could I make it that far? Um. It looked like it ought to be okay as long as there was a place to sit down as soon as I got there. I had made it into the building, albeit just barely, then had the rest on the nice comfy chair, so my legs had had a rest.
Let's go for it! Off we go with me using my walker, Jim on my left side. It was not long before I felt myself beginning to get into trouble, and I told Jim we needed to do our two o'clock waltz, so he put the walker aside, and then took both my hands. I took a few steps, then realized I was losing my legs, so I started giving it everything I had. No good. I told Jim, then, that I was not going to be able to make it, and started going down, with him increasing his hold on me. Van was on my right side. Slowly I crumbled to the floor in a heap, going down like an accordion. We had traveled no more than about half the hallway when that happened - the legs totally giving away.
I cannot remember how I got from the hallway into the little x-ray room, but there I was on the floor. * Jim said he an the dentist literally drug me by the upper arms with me trying to keep standing on my feet to walk - no go!* I have a way of getting up off the floor here at home, and I was so confident it would work. SPLAT! All I ended up doing was hurting myself really good. Again. The same phrase..... I didn't think. I'm not used to wearing shoes here at home, and use my feet, I guess for traction, and whatever. I had on these clunky sports type shoes that yielded to nothing.
Jim went home to get me a lollipop, and I managed to get up against the wall, close my eyes, and just rest, rest, rest. . . . I could feel some muscle restoration, little though it was. My mouth was the first that I noticed.
Strange. We do not live far from the clinic, but Jim had been gone long enough to have been there and back two or three times. Where was he? What could have happened? Then I heard him coming down the hallway, and he was saying, "I got the old wheel chair out of mothballs . . ." and then he comes through the door with the old manual chair. He had a plan. A very good plan. One thing I *had* been thinking of was of needing something in front of me, with him behind me, and I could get up that way with him to push from behind me. We have had to do this at home. There was nothing there in that room though. Aha! There was now! Lock those wheels, and we are set to go! We got me up off the floor so quickly, I think they were still rather amazed when we left, with Van helping Jim getting me down the front steps.
Technology is good (I'm all for it!), but nothing or anyone could get me to give up my powered chair, however, I owe a lot of credit to the simple manual wheel chair tonight. That floor was getting harder the longer I was having to sit there.
Something I learned from that experience today. I absolutely cannot walk. Sometimes I go through a spell of thinking maybe it is all my imagination or something like that, and that I really could walk further than a few steps if I would just do it. Where would I have tried, though? And where could I have tried it with the determination I had. There were onlookers, I surely didn't want to fail before them. Never could I have tried to walk any harder than I did today. With my doubts, and my reluctance to accept the reality of this disease, I needed the validation. Well, I guess I got it good and proper!
Tootles
Striving for a world without Myasthenia Gravis
That was the general information. Now to what all is going on. One of the autoimmune diseases that I have is Sjogren's (Show-grins) and one of the effects of it is dental decay, and I mean it happens fast. First, I had several root canals one right after another. The dentist that did them asked if i ate a lot of sweets. Nope. No known cause, and then the dry mouth came to light. It was not long before my teeth, one by one, started turning black, and breaking off even with my gum line. Hey! What gives. I've never had perfect teeth, but I've always had *good* teeth.Not pretty, but *good* ones. Now look at the mess in my mouth. My dentist said I needed to go to a diabetic dentist. Okay. Haven't made it there yet, but my teeth have stopped breaking. Wonder if it is the moister mouth due to the side effects of the Mestinon for the MG? Timeline is just about right for it. It's a good probability isn't it. Let's go with it!
Van's secretary called and asked us not to come until about 2:00 because he would have to help Jim get the wheel chair inside. Since we were all ready to go, we figured we could wait in his office as well as right here, so we went on up there. Uh oh. No way could we get into that building, even with our wooden ramps. They would be too short. I just felt like I could walk that distance with my walker, so we went back to the house to get it.




After Van got finished doing what he needed to do with the teeth, he said he wanted to take a couple of x-rays to make sure he wasn't missing anything going on beneath the surface. No pictures. Jim had to step outside the room for that. Well, if I had realized just how extremely important these pictures were going to be, I would have insisted that he put on a lead apron, and get shots of Van putting the little x-ray thingies in my mouth, but as usual, I didn't think. ;-/

After taking two shots of my mouth, Van said he wanted to do an x-ray that goes around my head. Problem. It was about a ten foot walk down to the little room where that machine was located. Could I make it that far? Um. It looked like it ought to be okay as long as there was a place to sit down as soon as I got there. I had made it into the building, albeit just barely, then had the rest on the nice comfy chair, so my legs had had a rest.

I cannot remember how I got from the hallway into the little x-ray room, but there I was on the floor. * Jim said he an the dentist literally drug me by the upper arms with me trying to keep standing on my feet to walk - no go!* I have a way of getting up off the floor here at home, and I was so confident it would work. SPLAT! All I ended up doing was hurting myself really good. Again. The same phrase..... I didn't think. I'm not used to wearing shoes here at home, and use my feet, I guess for traction, and whatever. I had on these clunky sports type shoes that yielded to nothing.
Jim went home to get me a lollipop, and I managed to get up against the wall, close my eyes, and just rest, rest, rest. . . . I could feel some muscle restoration, little though it was. My mouth was the first that I noticed.
Strange. We do not live far from the clinic, but Jim had been gone long enough to have been there and back two or three times. Where was he? What could have happened? Then I heard him coming down the hallway, and he was saying, "I got the old wheel chair out of mothballs . . ." and then he comes through the door with the old manual chair. He had a plan. A very good plan. One thing I *had* been thinking of was of needing something in front of me, with him behind me, and I could get up that way with him to push from behind me. We have had to do this at home. There was nothing there in that room though. Aha! There was now! Lock those wheels, and we are set to go! We got me up off the floor so quickly, I think they were still rather amazed when we left, with Van helping Jim getting me down the front steps.
Technology is good (I'm all for it!), but nothing or anyone could get me to give up my powered chair, however, I owe a lot of credit to the simple manual wheel chair tonight. That floor was getting harder the longer I was having to sit there.
Something I learned from that experience today. I absolutely cannot walk. Sometimes I go through a spell of thinking maybe it is all my imagination or something like that, and that I really could walk further than a few steps if I would just do it. Where would I have tried, though? And where could I have tried it with the determination I had. There were onlookers, I surely didn't want to fail before them. Never could I have tried to walk any harder than I did today. With my doubts, and my reluctance to accept the reality of this disease, I needed the validation. Well, I guess I got it good and proper!
Tootles
Striving for a world without Myasthenia Gravis
Monday, February 4, 2008
The Ohio bunch
The Ohio Bunch

Under "About Me" I state that I have three great-grandchildren, yet you have only seen one of them here, and that is Ashton Sears. You have seen two granddaughters, and they are Ashley, and Christen. If you do the math, the numbers do not add. Maybe today we can change some of that. I got some up-to-date pictures this week. First granddaughter Jennifer, daughter of my son Jim, is mother to great-grandson Matthew James, and great-granddaughter Kaitlyn Nicole. They live in Ohio. Matthew will be five this July 3rd. Friday, February 8th, Kaitlyn will be the big 2 year old!
Now, let's get down to a picture or two. Some are lost, temporarily I hope, on another computer that I may be able to retrieve. (click on small pictures to see them larger)
There are not as many of Kaitlyn, especially web-ready. She is our "Princess" and I have made a film debut of "The Little Princess Growing Up" beginning when she was four months old, one year old, and the last one is this week, almost the big TWO year old! I get the report that she loves the camera! Just *MY* kind of girl!,
Matthew getting one of his first kisses from his mommy.
Precious!

New granddaddy, my son, holding his first grandchild.

Jennifer's mother, Matthew's grandmother

Now, coming up this week, new pictures!

..
Now, let's get down to a picture or two. Some are lost, temporarily I hope, on another computer that I may be able to retrieve. (click on small pictures to see them larger)
There are not as many of Kaitlyn, especially web-ready. She is our "Princess" and I have made a film debut of "The Little Princess Growing Up" beginning when she was four months old, one year old, and the last one is this week, almost the big TWO year old! I get the report that she loves the camera! Just *MY* kind of girl!,
Matthew getting one of his first kisses from his mommy.
Precious!


New granddaddy, my son, holding his first grandchild.

Jennifer's mother, Matthew's grandmother

Now, coming up this week, new pictures!

..
The zoo animals with Matthew

Toodles
Striving for a world without Myasthenia Gravis
Sunday, February 3, 2008
It's so nice . . . . .
. . . . . to have a nice day.
What makes a nice day? Can you say pain free? How about the man you love around the house? How about chicken salad? Hmmmm good. It's been a nice day.
Still making it good..... New iPod. Snag in the deal, though. I cannot figure how to get the iPod working. I'm searching the internet for some instructions, and I may be awake here all night, but I want to download some music.
Running from here..... I *want* to get this beauty working. It really is pretty, a sleek, shiny black and silver. I'm beginning to think I am a technology addict. Love the latest!!
Toodles
Striving for a world without Myasthenia Gravis
What makes a nice day? Can you say pain free? How about the man you love around the house? How about chicken salad? Hmmmm good. It's been a nice day.
Still making it good..... New iPod. Snag in the deal, though. I cannot figure how to get the iPod working. I'm searching the internet for some instructions, and I may be awake here all night, but I want to download some music.
Running from here..... I *want* to get this beauty working. It really is pretty, a sleek, shiny black and silver. I'm beginning to think I am a technology addict. Love the latest!!
Toodles
Striving for a world without Myasthenia Gravis
Saturday, February 2, 2008
Naming the twins
NAMING THE TWINS

Satisfied there were no more kittens in the grass nest Sassy had made for her babies, one that had kept her babies dry during the rainy spell most effectively (you could not help but be greatly impressed), Christen and I carried the babies inside. We got plenty of towels to dry them and to warm them. They were so tiny, and just a-mewing!
First things first. A box. Newspaper for lining. Sassy. We had to find Sassy to nurse her babies. In the men-time..... gender? Being this small, with more growing to do, it was hard to tell specifically. The one clinging to Christen did not appear to have any white on her, mainly just tan and black, so that, to me ruled out calico, and the 99% female. Genitalia was inconclusive at that point, so, because of the clinging, Velcro action, we temorarily claimed *it* a *he* with the name of Velcro, which could fit either sex later after further, ahem, development.
First things first. A box. Newspaper for lining. Sassy. We had to find Sassy to nurse her babies. In the men-time..... gender? Being this small, with more growing to do, it was hard to tell specifically. The one clinging to Christen did not appear to have any white on her, mainly just tan and black, so that, to me ruled out calico, and the 99% female. Genitalia was inconclusive at that point, so, because of the clinging, Velcro action, we temorarily claimed *it* a *he* with the name of Velcro, which could fit either sex later after further, ahem, development.

Now, the poor little thing that I stepped on. Will I *ever* get over stepping on a tiny kitten that its mother had been successful in keeping alive throughout that rainy spell, and in all likelihood, these were her only two of the litter knowing of her past pregnancies. This kitten was equally difficult to determine the sex, but there were *some* signs pointing to possibly being a calico. The naming gurus we were, we came up with the all-outstanding name of Callie..... oh, can you guess that under *my* leadership ::::cough:::: I presumed her to be a lady.
It was not difficult to locate Mommy Sassy. She was beautiful.... black and white, very large, but not muscular heavy. If that is not a proper term, I just made it up, because she was large, but not heavy, and just hung from your arms whenever she was held. She had a great big bushy tail. After getting her back into the house (she was used to inside and out..... her preference..... we already had one cat, Precious who was Ashley's cat) we put her over with the kittens, and all the towels, blankets, and whatever was gathered together for the special new family members (did I hear *anyone* say anything about them *not* staying with us?). Oh, the homecoming! The little squirmers couldn't walk, but boy, could they wiggle, waggle to mommy's tummy. Once there, however, Callie kept rooting *Velcro* out of the way, and oh, the pushing and shoving between two little baby kittens, both wanting the same teat. Over the next couple of hours of watching Sassy and her babies, it was clear that it pained her considerably whenever they attempted to nurse, and the babies were not being satisfied with any nourishment from her. Conclusion. She only had one *working* teat, and it appeared to be almost dried.
That called for a trip to Wal-Mart. Emergency baby supplies were needed right away! Infant feeding supplies. Nothing could pump up the adrenaline more in me than caring for a baby, human or animal, though I have to admit, it has been many, many years since I've nurtured a baby animal, the one coming to memory right now was the cat delivery in Altus, Okalahoma, when the mama cat chose beneath our bed for her delivery room! I had to crawl to the middle of the bed to get the kittens out from under there, and into a nice clean bed for them and mama. Oh, life's wonderful experiences..... my first delivery, and with two little boys watching the whole show!

After their feedings, I took them to the sink and bathed them as nearly like their mommy as I could, being a human and all. No licking them, but I would rub their little faces with my cheeks where their mamas would normally lick theirs.
Later that afternoon, Debbie came to see the new family or addition to our family, whichever is appropriate. All of us *girls* in the family cannot say "no" to an animal, dog or cat, we're pushovers. Not sure who *draws the line* and shows a bit of common sense when needed. Jim doesn't even try; he feels a bit outnumbered!

The three of us sat with our legs spread out, feet touching to making an impromptu fence, because though they could not walk, they sure could scoot on their *fall, get up, try another leg, fall get up, over, and over..... LOL). Debbie and I used this time to check them out a bit further, and I am not sure now, if this was the time, but we finally came to the conclusion that they were both females, and we did not like *Velcro* for the one name, changing it to Missie. That was nearly five years ago, and a few of the details have escaped me, as to when we changed her named from Velcro to Missie, but it was done, and that is all that was important.
As the kittens grew, we noticed certain personalities about them. Making them proper Southern ladies, though we still referred to them as our babies, we went about giving them middle names: Missie Nicole, named after Christen; Callie Elizabeth, named after Ashley. These are also the middle names of Christen and Ashley. Ironically, the names have fit each baby.
These two have been near and dear to my heart, after all we went through together, including middle of the night feedings. There was one weekend when Missie Nicole should have died of some kind of kitten disease, but I stayed up with her constantly, helping her with her vomiting, diarrhea, and weakness for those two to three days. I went to the Internet to find out what could be wrong with her, and what to do for her until the vet's office would be open on Monday. I have loved her as I would a little child, especially after all we went through that weekend. I had never bonded with an animal like that before in my life.
I bonded with Callie in a different kind of way. I had some overall shorts that I wore around the house, especially when I was sitting at the computer. My little Callie would get up in my lap, then, with little short, stubbly legs, head straight for the pocket in the bib to my overalls, and tuck herself right in there. I could get up and walk around, and she would stay right there, where she was; we would snuggle, and rub noses together. Callie was good at learning new tricks to do, a good entertainer.
They are not as close to me any longer, and I miss their companionship so much. I've been entertaining thoughts of getting a little kitten just for myself, for up here on my bed with me. Dunno. Just thoughts. Others do not understand my need for a companion that is mine. Just mine.
They are not as close to me any longer, and I miss their companionship so much. I've been entertaining thoughts of getting a little kitten just for myself, for up here on my bed with me. Dunno. Just thoughts. Others do not understand my need for a companion that is mine. Just mine.
There you have it. There are two other cats that I'll cover another time, but these needed to be handled together, separately from the others, since they are the twins, the babies, the special ones. Their antics keep us entertained constantly. It is hard to keep from going into their behaviors, so it is best to end this now.
Toodles
Striving for a world without Myasthenia Gravis
Friday, February 1, 2008
Found One Day
FOUND ONE DAY
Christen, whose middle name is also Nicole, was here one day; we were sitting on the back patio basking in the August heat. We live in a townhouse, and a couple of doors down, our neighbor had several cats that she finally gave up one day because of the difficulty she was having caring for them. I knew that Sassy was pregnant, but I had not seen her in a while. I kept putting food out for her as she made the transition between the two houses. As Christen and I sat there, all of a sudden we heard a mewing sound. Very carefully I walked toward the sound, which was where the grass had grown tall during some recent rains. It was easy to find the source of the meow, and I reached down, and picked up a squirming little mess of four flying legs, with no eyes open yet.
I gave the little mess to Christen to hold while I turned to go and look to see if there were any more. As she took the kitten, it just clung to her clothing, and Christen said, "Look, Mammaw, it's clinging just like Velcro. I don't even have to hold it."
So, off I went to check the grass for any more kittens, walking much slower than the first time. All of a sudden there was some loud mewing, and I quickly jumped from where I was! There was another one, and I had stepped on it! I didn't think I had hurt it, but I was quick to check it out. Its eyes, too, were still closed, and had those flailing legs. They were so cute.
I gave them to Christen to hold while I went to look for any more, but it seemed that these two were all there were. What I noticed while looking was an intricate maze of the overgrown grass where Sassy had made a protective area for her babies. She had provided for them well.
Finally, I determined these were the only ones, and Christen and I took them into the house to check them out thoroughly, the little squirmers.
NEXT: Naming the twins
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