Here we go again........ the day before! I know. They think I am a rubber, bouncing ball! However, whatever, I am glad of the change made this time. Have you ever had rainy days that felt so good and cozy, while sitting inside reading, sewing, watching TV, just idling on the computer or reading and answering emails, things that are hard to accomplish if the day is too sunshine beautiful to sit, and waste time (so it seems)? That is what this day rose to be like..... no sun was shining, we had our morning coffee time together, then it was time to start drawing things to a close. Though unable to jump up and down and get all around as you might do, I still can pack bags from my bed. Amazing all the things you learn to do whenever you have no other choices. ;-) There wasn't much more to do, so I just kinda dwiddle dwaddled along throughout the morning; Jim was to call Dr. Saeed's nurse after noon to make sure she remembered to get him to sign my orders, and she then to fax them to the hospital.
This is a new nurse. Rose, the nurse we have had, who was so sweet, and thorough is no longer there because of having a baby, a little boy. The new nurse, I do not know her name yet, was soooo excited whenever she talked to Jim because she had remembered, and already had my orders signed!! She only had faxing them to the hospital left, and she would call us back once she had done that.
Ahhhhh...... all is going well. Does this sound far too familiar to those who have been here these past so many months? Let's see..... we began these treatments May 4th, and though we've been doing them every four weeks, I don't think it actually comes down to that many because of scheduling, but this is about my seventh or eight IVIg. If I get bored, I'll count them out, but whenever I'm feeling this good, I do not get bored! Too much to do. Too much fun to be had. Too much living to do.
Ooops.... I could have run off the main road here, and followed that tangent of all else that I've been doing that this MG has knocked me out of for the past few years, but now has been coming back. Woopie! Helps the ole self-esteem!! Lifts the spirits. Just you wait. Chuggalug, chuggalug, here we go, down the road, Road to Remission! Oh, the doubts. Oh, the dreams. Back and forth, back and forth. Good days, great days, wonderful...........ooooooh noooooo....bummer days all of a sudden, out of the blue, what to do? Reach for the Perspective. Try. Try. Subject for another time.
Back to the main Road where Sheila, Dr. Saeed's new nurse - I found out what her name is - is busy getting me set up with the hospital. It is not very long before she returns Jim's call. Hearing this one-sided conversation, his side sounds okay, just a little difference in there I cannot quite make out what it is (remember I'm hard of hearing, and only hear parts), and I hear a *totally unexpected* word - Monday. Monday? Monday. Aarrrrgh! Hurry, Jim, Hurry, Jim. Get off the phone. What is all of this about Monday? My senses are all perked up. I can get very impatient sometimes. hehehe Think it aggravates Jim. Poor Jim, my sweetie. Can't say as I blame him, though. I'm such a nosy thing, a *right now* person! I *think* I may have a son somewhat like this, but I wouldn't say so, and I don't think you should either. hehehe I mean, as fast as anyone decides to move his business from his house down to main street Senatobia, Mississippi, and then has the fete completed as quickly as he did, is certainly not static! But, it *is* okay to tell anyone that I'm proud of him *s*, and really do love him. *s* Gush.... Oh, now I'm blushing, and he's probably going to fuss because I mentioned him in public. I'll just tell him it was good pr for his business. He'll tell me I could have done it without the mushy, mama stuff.
Yep, I was hearing right, even with the little hearing I *do* have. "We're not going until Monday," Jim tells me, but the apparent good part for us is that we will be going straight through admissions this time, and not through the ER. I hope with all that is within me this will come to pass. Those working in Holdover in the ER are just as nice as they can be, but it is very stressful to have to go there, settle in, get my first bag of little globulins running through my veins - oops, catch that bunch over there, they're getting out of line, bet they didn't pay attention - then later, they pull the thin little curtain back - peek-a-boo - and tell me I'm traveling. Going to my floor. Third floor at St. Francis - Bartlett.
It doesn't seem like much, but with Myasthenia Gravis, even that much stress can have an effect on me physically; can bring on the MG symptoms. There is nothing I can do about it. I try with all my might; use all my techniques I've learned over the years. But waiting, being jerked around from place to place like that.... that naturally stirs up my system, my system that we are trying to flood my with all those little gamma globulins, and give it some protection from the antibodies so that it might work fairly normally for a little while - at least more than a couple of weeks - eh, docs???? Wikipedia has good explanations http://en.wikipedia.org/wiki/Intravenous_immunoglobulin.
So, there it is. Wheeee...... the weekend at home while feeling so good! That sounds like a good time to have some fun! What will it be? More time on the computer doing digital graphics? Jim's got another batch of old photos to be scanned. Now would be a good time. Plenty of digital photography to do. Digital art. Because of the blog, all the new babies, my mind keeps coming back to the photography work. I just love that, and really, I've been doing more of that for the last fifteen years, than anything else. I just cannot look at a picture, and not have my mind start seeing possibilities in it. Now that I am feeling better, and now can see better once again, maybe, just maybe, I can get back to getting pictures printed as well. Is this not proof the IVIg is working. Small steps like this? I think it is, but I'm so impatient. I want it all *right now*!!!
Maybe I should settle for a good night's sleep *right now* to help maintain the status quo. ;-) I tend to get stuck in GO, and have a hard time slowing down or stopping for those good rests that are the best medicines for Myasthenia Gravis. Oh, and it looks like a great time to clean off my computer, temp files, etc. Maybe a reboot. I have so many open windows, and programs. Tsk Tsk Maybe upload some pictures to Flickr. Maybe.... ahhhhh.....see what I mean. My mind never stops...... See you later
Toodles
Striving for a world without Myasthenia Gravis
Thursday, January 10, 2008
Wednesday, January 9, 2008
Day of anticipation
This has been a long-awaited day for us...... Isn't waiting just the worst thing in the world? This is the day for Jim's return visit to the urologist to find out about his prostate cancer, it's aggressiveness, and treatment options.
OUTCOME: First the bad news, he has cancer. Second the good news, It is early, and self-contained. His treatment of choice at this time is robotic prostatectomy.
His appointment was for early this morning, and we decided for me to stay home. It was early and cold. We have certainly learned, or are learning the importance of prioritizing, and to not knock a good boat when you have one, and that is what we had at 6:30 this morning.
You know, I do not feel as uptight, scared, and whatever else about his cancer stuff as I did back whenever I talked to my doctor about it. At that time, it was just a fear of mine. A B-I-G fear! But now, I've had to face my fear more closely. Does that mean I do not care any less? No. Does letting the big "C" stress me out mean that I am *more* concerned than if it didn't? No. It just means I have placed it in its rightful place. This goes for anyone. Being overly distraught doesn't mean you care more than someone who takes it with more composure.
I still have not reached that plateau with my sister yet, though it is just this personal thing of mine that I'm dealing with, which *I* think I've come a ways since her initial breast cancer news last year. I think I am more burdened with all she has facing her now, rather than the cancer itself. You know. That helpless feeling of not being able to do anything.
Well, sleep crept in and stole its bit. 4:30 a.m. now. Calling it quits.
Toodles
Striving for a world without Myasthenia Gravis
OUTCOME: First the bad news, he has cancer. Second the good news, It is early, and self-contained. His treatment of choice at this time is robotic prostatectomy.
His appointment was for early this morning, and we decided for me to stay home. It was early and cold. We have certainly learned, or are learning the importance of prioritizing, and to not knock a good boat when you have one, and that is what we had at 6:30 this morning.
You know, I do not feel as uptight, scared, and whatever else about his cancer stuff as I did back whenever I talked to my doctor about it. At that time, it was just a fear of mine. A B-I-G fear! But now, I've had to face my fear more closely. Does that mean I do not care any less? No. Does letting the big "C" stress me out mean that I am *more* concerned than if it didn't? No. It just means I have placed it in its rightful place. This goes for anyone. Being overly distraught doesn't mean you care more than someone who takes it with more composure.
I still have not reached that plateau with my sister yet, though it is just this personal thing of mine that I'm dealing with, which *I* think I've come a ways since her initial breast cancer news last year. I think I am more burdened with all she has facing her now, rather than the cancer itself. You know. That helpless feeling of not being able to do anything.
Well, sleep crept in and stole its bit. 4:30 a.m. now. Calling it quits.
Toodles
Striving for a world without Myasthenia Gravis
Tuesday, January 8, 2008
Countdown to Intraveneous Immunoglubulin or IVIg
The Carpetbagger bags are out. Bobby, I never dreamed that when I got them that they would be needed for such as this. I"m so Proud when I enter *my* floor with my beautiful bags in tow.
Gowns and jammies are washed and ironed. Need enough for four days with a couple of changes each. I've been doing this since May 4, 2007, and you would think I had this all down by now, but no two hospitalizations have not been the same.
A note here. I never asked Jim to iron them. True, the white cotton ones really do need something, and you would be surprised at the great job he does. Why, he's the best ironer any cleaner in town could even think of having! LOL I've just about convinced him now, though, that they do not need all those details in the ruffles ironed. He sure got the nurses attention when they saw them. They said he could come and iron for them any ole day. Don't tell him, but he has a few of them wrapped around his little finger. I order a cold drink, they bring two. Hmmm my. They'd spoil him in a minute. 'S Okay. He's my sweetie, and he's worth it. hehehe We've gotten so silly in our golden years.
Jim tried to call Dr. Saeed's nurse today for her to get the orders written to be called into the hospital. It is supposed to be for four days, with the drip set for 40 cc per hour, and I think the ratio based on 1 kg weight rather than two. I need to go look that up after I post this. We are trying to do everything we can to reduce the side effects.
Good news. Strength is definitely improved tonight. I had fallen asleep (just a little cat nap you know ;), and woke when Jim was tightening down the hatches for the night. A good sign is that the ptosis has been better all day, and I can see!
Wednesday afternoon: Lots of sleep, and rest since I wrote that above. Now Blogger is telling me "securityToken...." and won't let me save nor Publish this, so I've got to figure it out. Blah! I need to do more studying and organization of this Blogger stuff. It just tells me ERROR, but not what it is.
Toodles
Striving for a world without Myasthenia Gravis
Gowns and jammies are washed and ironed. Need enough for four days with a couple of changes each. I've been doing this since May 4, 2007, and you would think I had this all down by now, but no two hospitalizations have not been the same.
A note here. I never asked Jim to iron them. True, the white cotton ones really do need something, and you would be surprised at the great job he does. Why, he's the best ironer any cleaner in town could even think of having! LOL I've just about convinced him now, though, that they do not need all those details in the ruffles ironed. He sure got the nurses attention when they saw them. They said he could come and iron for them any ole day. Don't tell him, but he has a few of them wrapped around his little finger. I order a cold drink, they bring two. Hmmm my. They'd spoil him in a minute. 'S Okay. He's my sweetie, and he's worth it. hehehe We've gotten so silly in our golden years.Jim tried to call Dr. Saeed's nurse today for her to get the orders written to be called into the hospital. It is supposed to be for four days, with the drip set for 40 cc per hour, and I think the ratio based on 1 kg weight rather than two. I need to go look that up after I post this. We are trying to do everything we can to reduce the side effects.
Good news. Strength is definitely improved tonight. I had fallen asleep (just a little cat nap you know ;), and woke when Jim was tightening down the hatches for the night. A good sign is that the ptosis has been better all day, and I can see!
Wednesday afternoon: Lots of sleep, and rest since I wrote that above. Now Blogger is telling me "securityToken...." and won't let me save nor Publish this, so I've got to figure it out. Blah! I need to do more studying and organization of this Blogger stuff. It just tells me ERROR, but not what it is.
Toodles
Striving for a world without Myasthenia Gravis
Monday, January 7, 2008
A full day's worth
We had to call and reschedule the two appointments for today. Yes, I could have pushed myself and made it. Neither appointment was critical, though. The most important thing with Myasthenia is Rest. That is the hardest thing for me to do. I have done real good lately getting my good rest as I am supposed to do. So, it did not make sense to me to push myself to make that trip, and possibly set myself backwards. It was also raining. The decision was made to stay home and reschedule. I ended up sleeping the entire morning. Good rest. As I slept I could smell the vegetables Jim was cooking for lunch; after lunch I relaxed in the rocking chair until I got up to start this. I *do* feel better than last night or this morning. Only my arms feel like the calves of my legs.
No tremors thank goodness. Hmmmm..... let's see..... I *think* I might can say that the tremors *do* get better with rest. Does that mean they are Myasthenia related? Something to keep up with. They also get better with 0.5 mg of Xanax, and are not associated with any kind of emotional distress. They seem to be located more in my right arm, hand, and fingers, with my hand taking flight of it own volition sometimes.
No headache of any kind! Hooray! Now it is about time to go for the next IVIg, and get the headaches started all over again. Arggg!
This is *MY* Myasthenia! How often......how quickly it changes on me.
Ashley and Ashton are here.
I held the sweet baby for a while, but had to give him back to his mommy. Phooey on these weak arms. It was close to his nap time though, and he went to sleep on a pallet beside my bed. While on the pallet he started going for his toy, and pushed himself with his knees. His first time at an all out crawling effort, going for that toy. Ashley and I were cheering him on!
The day has been a good one, with some strength restored. Jim and I noted my walking steadier tonight. MG is a very strange disease. Oh, I just tried to explain how the nerves cannot get their message to the muscle receptors, and it got so mumble jumbled, I erased it. But, that is it in a nutshell. The muscles simply do not get their message from the nerves, (the antibodies are at play in there) and thus when I try to use them, they........... well, they're just plain dumb, and stay as they are.
The basic principle of the broken message is there, it is just the whys and wherefores that are missing. Research, research, research.......... so much is needed. The Muscular Dystrophy Association does research on Myasthenia Gravis. There are some foundations, Myasthenia Gravis Foundation of America is one. But MG is a *small* disease, not garnering the large ........ well, my mind has just, left me, a common occurrence when I get tired, which I am right now. ;-). What I mean is on the tip of my tongue, and will come to me. Later, but I'll leave that much there because you will probably know what I was trying to say.
Coming public with my IVIg treatment and my life with MG is my way of making this rare disease more noted. Nothing here is scientific; it's just my life with the disease, and trial treatments, trying to find what works for me. I was just looking at some different web sites on MG, and they said with the right treatment you can lead a normal life. That is what I read just after my diagnosis, and I thought, "Hey, no problem, we'll just treat this, and go our merry way." Not so! So far, we have not been able to find a treatment that works for me. Many doctors never see a case in their lifetime of practice. We myasthenics learn from each other in email groups, and forums.
Of interest to me:
Myasthenia Gravis Foundation of America
Non-Hodgkin Lymphoma
Prostate Cancer
Breast Cancer
In the news tonight from our home town of Helena-West Helena, Arkansas, the Obituary of Mrs. Harold Chorley, Jim and my ninth grade English teacher back in the 50s. A most outstanding lady, loved by so many. I'm so glad I got to see her a few years ago for my 45th class reunion.
Goodnight
No tremors thank goodness. Hmmmm..... let's see..... I *think* I might can say that the tremors *do* get better with rest. Does that mean they are Myasthenia related? Something to keep up with. They also get better with 0.5 mg of Xanax, and are not associated with any kind of emotional distress. They seem to be located more in my right arm, hand, and fingers, with my hand taking flight of it own volition sometimes.
No headache of any kind! Hooray! Now it is about time to go for the next IVIg, and get the headaches started all over again. Arggg!
This is *MY* Myasthenia! How often......how quickly it changes on me.
Ashley and Ashton are here.
I held the sweet baby for a while, but had to give him back to his mommy. Phooey on these weak arms. It was close to his nap time though, and he went to sleep on a pallet beside my bed. While on the pallet he started going for his toy, and pushed himself with his knees. His first time at an all out crawling effort, going for that toy. Ashley and I were cheering him on!
The day has been a good one, with some strength restored. Jim and I noted my walking steadier tonight. MG is a very strange disease. Oh, I just tried to explain how the nerves cannot get their message to the muscle receptors, and it got so mumble jumbled, I erased it. But, that is it in a nutshell. The muscles simply do not get their message from the nerves, (the antibodies are at play in there) and thus when I try to use them, they........... well, they're just plain dumb, and stay as they are.
The basic principle of the broken message is there, it is just the whys and wherefores that are missing. Research, research, research.......... so much is needed. The Muscular Dystrophy Association does research on Myasthenia Gravis. There are some foundations, Myasthenia Gravis Foundation of America is one. But MG is a *small* disease, not garnering the large ........ well, my mind has just, left me, a common occurrence when I get tired, which I am right now. ;-). What I mean is on the tip of my tongue, and will come to me. Later, but I'll leave that much there because you will probably know what I was trying to say.
Coming public with my IVIg treatment and my life with MG is my way of making this rare disease more noted. Nothing here is scientific; it's just my life with the disease, and trial treatments, trying to find what works for me. I was just looking at some different web sites on MG, and they said with the right treatment you can lead a normal life. That is what I read just after my diagnosis, and I thought, "Hey, no problem, we'll just treat this, and go our merry way." Not so! So far, we have not been able to find a treatment that works for me. Many doctors never see a case in their lifetime of practice. We myasthenics learn from each other in email groups, and forums.
Of interest to me:
Myasthenia Gravis Foundation of America
Non-Hodgkin Lymphoma
Prostate Cancer
Breast Cancer
In the news tonight from our home town of Helena-West Helena, Arkansas, the Obituary of Mrs. Harold Chorley, Jim and my ninth grade English teacher back in the 50s. A most outstanding lady, loved by so many. I'm so glad I got to see her a few years ago for my 45th class reunion.
Goodnight
Sunday, January 6, 2008
A nice Sunday
Woke to a pretty good morning, after a couple of waltzes with Jim during the night.
Thank goodness there is not much pain, especially with the head and neck, just the calves of my legs which are still weaker than usual. Eyes with ptosis are a little better today, for which I am *very* thankful. I hang with those at ASD - Alt Support Diabetes, and with the ptosis, it is hard to read very much. They have been a really good support base for me, not only with diabetes, but with whatever my MG has dealt, and the hospitalizations with the after effects and all. They even let me go [OT] and let me vent or whatever it is that's personal. They are like family to me. Thanks guys and gals! Love ya!
Frank, new papa of Emily, said Ragdolls were for hugging. I think that's a good idea, don't you? That's what I like about my treks to the little girl's room. Jim and I hold hands, giggle, hug..... oh, that is on the way back when there is no urgency.
Tomorrow I have two doctors' appointments.
Just discussed my cancer fear with my doctor a couple of months ago, and now I face two immediate family members with it. Look forward to my appointment with him tomorrow to discuss my emotional feelings. That very well could be, probably is the base of my MG episode right now. I sent an email to the internal medicine group that sees me while in the hospital, and told them I surely needed them to work with me on my stress management.
[Few moments later]
Just was up, and oh, am I weak. So much to the point that I am considering canceling appointments for tomorrow. I see Latif in the hospital anyway, but did want to see him at the office to discuss my lowering my blood glucose levels during the infusion to see how it would affect my pain management. And, in addition to the other things I've talked about, I am do get follow-up lab work for rheumatologist because of taking methotrexate. Jim said to just wait and see how I am doing in the morning. Mornings are always best for myasthenics anyway, so we might could get down there and back before I would crash tomorrow.
My arm muscles have joined my claves in hurting tonight. They tremor, as do my hands and fingers. Time for Mestinon. Maybe that will help something.
Funnieeeeeee Blogger thinks my blog is a spam blog, and I don't even know how to finish putting mine altogether, getting some of this off this front page.
I think this is it for today. Crawling in for the night.
Goodnight all my children. Goodnight Mom. Goodnight Mammaw.
We're not the Waltons, but we are a good family.
Toodles
Striving for a world without Myasthenia Gravis
Thank goodness there is not much pain, especially with the head and neck, just the calves of my legs which are still weaker than usual. Eyes with ptosis are a little better today, for which I am *very* thankful. I hang with those at ASD - Alt Support Diabetes, and with the ptosis, it is hard to read very much. They have been a really good support base for me, not only with diabetes, but with whatever my MG has dealt, and the hospitalizations with the after effects and all. They even let me go [OT] and let me vent or whatever it is that's personal. They are like family to me. Thanks guys and gals! Love ya!
Frank, new papa of Emily, said Ragdolls were for hugging. I think that's a good idea, don't you? That's what I like about my treks to the little girl's room. Jim and I hold hands, giggle, hug..... oh, that is on the way back when there is no urgency.
Tomorrow I have two doctors' appointments.
Just discussed my cancer fear with my doctor a couple of months ago, and now I face two immediate family members with it. Look forward to my appointment with him tomorrow to discuss my emotional feelings. That very well could be, probably is the base of my MG episode right now. I sent an email to the internal medicine group that sees me while in the hospital, and told them I surely needed them to work with me on my stress management.
[Few moments later]
Just was up, and oh, am I weak. So much to the point that I am considering canceling appointments for tomorrow. I see Latif in the hospital anyway, but did want to see him at the office to discuss my lowering my blood glucose levels during the infusion to see how it would affect my pain management. And, in addition to the other things I've talked about, I am do get follow-up lab work for rheumatologist because of taking methotrexate. Jim said to just wait and see how I am doing in the morning. Mornings are always best for myasthenics anyway, so we might could get down there and back before I would crash tomorrow.
My arm muscles have joined my claves in hurting tonight. They tremor, as do my hands and fingers. Time for Mestinon. Maybe that will help something.
Funnieeeeeee Blogger thinks my blog is a spam blog, and I don't even know how to finish putting mine altogether, getting some of this off this front page.
I think this is it for today. Crawling in for the night.
Goodnight all my children. Goodnight Mom. Goodnight Mammaw.
We're not the Waltons, but we are a good family.
Toodles
Striving for a world without Myasthenia Gravis
Little Boy Lost
Long, long ago, and far, far away, there lived in the land..... no, no, no...... that's not right. I'm wanting to tell you a story of some time ago, true, but not *that* long ago. It was when we lived in Ankara, Turkey in the 70s. Our apartment was located on the third floor at the top of Nenehatun. From our balcony you could see all over Ankara. It made sitting out in the warm weather very enjoyable. It was also the main place for our two younger ones to play outside. The oldest one could go outside to play. It was also a place for Jim and me to relax in the evenings after the children were down, and the kitchen was done. No radio. No TV. There was no Air Force Base so we all lived *on the economy* with the Turkish people. This was our second time to live in Turkey, the first being in Izmir, in the mid 60s.
One evening before sundown one of us called for Bobby, the three year old, and received no answer. The children's beds, twin beds for the boys, and Debbie's crib, were all in one room so they could have a room just for playthings. We checked those rooms first. In their bedroom was Bobby's horse, and he often fell asleep while riding it. No. He was not on his horse, nor was he on his bed. From there to the play room. Easy to see he wasn't there, and thank goodness he had not worked his way out onto the balcony from that room even though it was locked with a large key. Scary thought!
Just off from the play room, then, we checked our bedroom. Nope. Easy to see no sign of him there. We continued on, calling his name as we went, tensions building within each of us because there just were no other places other than the kitchen, living area, extra room...... and the balcony. Surely he had not gone out on to the balcony without us. He was tall enough to climb on it; climb on it and fall! Holding our breath, we looked. No sign of Bobby! Whew!
Now what? Good friends lived just a street over, and maybe, just maybe he had gotten out and walked over to their house. Didn't sound likely to us, but in this situation, you go for every little bit. Jim walked over to their house, only to return moments later with Sue and Bill accompanying him.
As we stood around talking about what to do next (*this* mother almost frantic but not yet), some of our Turkish neighbors were inquisitive, and looked around the nearby area of our apartment building. Jimbo, our oldest, had had to stay inside the apartment to watch his baby sister Debbie, but here he was out on the balcony trying to get his dad's attention, being told to go back inside. Finally, I guess the young six year old voice was loud and strong enough to really sink into his dad's hearing, and he told him "Bobby's in here!"
That was probably the fastest I ever took those stairs.Iinside, we found a sleepy-eyed little boy, having no idea what all the fuss was about, only complaining with raspy voice that his legs hurt. His legs hurt because he had been sitting on the potty chair all of that time, and however long before we began the hunt. In fact, it was his legs going to sleep that had awakened him. So, I guess you could say he found himself.
So. Why did we miss him when we checked the house when that room had only their beds and Bobby's horse in it?
The training chair was not in use at the time. Debbie was coming of the age to begin training, and I had placed it there out of the way until that time..That's why no one had pulled the door open to look back there.
The End
Toodles
In memory of Robert Sears "Bobby" Wages
October 31, 1967 - October 5, 1984
Killed at 16 in an automobile accident
One evening before sundown one of us called for Bobby, the three year old, and received no answer. The children's beds, twin beds for the boys, and Debbie's crib, were all in one room so they could have a room just for playthings. We checked those rooms first. In their bedroom was Bobby's horse, and he often fell asleep while riding it. No. He was not on his horse, nor was he on his bed. From there to the play room. Easy to see he wasn't there, and thank goodness he had not worked his way out onto the balcony from that room even though it was locked with a large key. Scary thought!
Just off from the play room, then, we checked our bedroom. Nope. Easy to see no sign of him there. We continued on, calling his name as we went, tensions building within each of us because there just were no other places other than the kitchen, living area, extra room...... and the balcony. Surely he had not gone out on to the balcony without us. He was tall enough to climb on it; climb on it and fall! Holding our breath, we looked. No sign of Bobby! Whew!
Now what? Good friends lived just a street over, and maybe, just maybe he had gotten out and walked over to their house. Didn't sound likely to us, but in this situation, you go for every little bit. Jim walked over to their house, only to return moments later with Sue and Bill accompanying him.
As we stood around talking about what to do next (*this* mother almost frantic but not yet), some of our Turkish neighbors were inquisitive, and looked around the nearby area of our apartment building. Jimbo, our oldest, had had to stay inside the apartment to watch his baby sister Debbie, but here he was out on the balcony trying to get his dad's attention, being told to go back inside. Finally, I guess the young six year old voice was loud and strong enough to really sink into his dad's hearing, and he told him "Bobby's in here!"
That was probably the fastest I ever took those stairs.Iinside, we found a sleepy-eyed little boy, having no idea what all the fuss was about, only complaining with raspy voice that his legs hurt. His legs hurt because he had been sitting on the potty chair all of that time, and however long before we began the hunt. In fact, it was his legs going to sleep that had awakened him. So, I guess you could say he found himself.
So. Why did we miss him when we checked the house when that room had only their beds and Bobby's horse in it?
The training chair was not in use at the time. Debbie was coming of the age to begin training, and I had placed it there out of the way until that time..That's why no one had pulled the door open to look back there.
The End
Toodles
In memory of Robert Sears "Bobby" Wages
October 31, 1967 - October 5, 1984
Killed at 16 in an automobile accident
Saturday, January 5, 2008
Peace
Ashely and Ashton were here tonight for a while after she got back from getting us a Starbucks. Ashton stayed here on my bed with me, even after she got back, and stayed to visit a while. He got fussy, and I held him close, rocked back and forth, and sang (of sorts ;) to him as he fell asleep. I found myself wandering into the old chorus we sang so often...... "Peace Like a River" and though I started it just to soothe a baby, it soon was soothing me. Then I thought of another verse we usually sang with it.... Joy. For me, today, in the situation I find myself with my family I love, Peace and Joy seem to go hand in hand to facing whatever tomorrow brings.
If you know this chorus, sing along, wherever you are....... aloud, or within......... whatever. Find peace and joy for your life, too.
I've got peace like a river,
I've got peace like a river,
I've got peace like a river,
I've got peace like a river in my soul.
I've got joy like a fountain,
I've got joy like a fountain,
I've got joy like a fountain,
I've got joy like a fountain in my soul.
If you know this chorus, sing along, wherever you are....... aloud, or within......... whatever. Find peace and joy for your life, too.
I've got peace like a river,
I've got peace like a river,
I've got peace like a river,
I've got peace like a river in my soul.
I've got joy like a fountain,
I've got joy like a fountain,
I've got joy like a fountain,
I've got joy like a fountain in my soul.
Bumps in the road
Okay, over in the "About Me" I said to expect the rocky road sometimes. I'm not going to call this rocky right now, just bumpy. And, Yep. This is LIFE! I didn't keep getting that better day for today after all. Such is LIFE. Such is LIFE with MG. Such is LIFE with MG with STRESS.
I did keep getting weaker last night. Didn't feel bad at all. Just losing legs and vision (this one really makes me mad because it affects my web reading/work). The legs? Eh? Didn't think much of it until making the trek to the little girl's room at the other end of my room here. Ooops! Too close a call on a fall while holding on. I went on and sought sleep then last night, knowing what is best for me.
Woke about 2:00 with the need to make the trek again. Had wobbled a short distance, and this voice out of semidarkness says, "What you doing??" Yikes! It was Jim! He was lying on the couch. I've never seen that before. LOL That was enough to make me not even have to complete my trek to the girl's room. He said, big manly voice, "Wait right there." If I'd had a stronger voice, I'd have said, "Yes, sir," but I just stood there holding on till he got to me and we waltzed the rest of the way.together. Sweet, huh? Guess we could call it "The Two O'Clock Waltz." I had to sit and rest in my rocker on the way back. It is right beside my bed, and Callie, one of our babies was curled up in it asleep. I was only going to use the outer edge of it, but Callie didn't know, and she got down. Once I was back into my bed, though, it was not long until she had reclaimed her spot.
Miss Callie Elizabeth named after Ashley
I did keep getting weaker last night. Didn't feel bad at all. Just losing legs and vision (this one really makes me mad because it affects my web reading/work). The legs? Eh? Didn't think much of it until making the trek to the little girl's room at the other end of my room here. Ooops! Too close a call on a fall while holding on. I went on and sought sleep then last night, knowing what is best for me.
Woke about 2:00 with the need to make the trek again. Had wobbled a short distance, and this voice out of semidarkness says, "What you doing??" Yikes! It was Jim! He was lying on the couch. I've never seen that before. LOL That was enough to make me not even have to complete my trek to the girl's room. He said, big manly voice, "Wait right there." If I'd had a stronger voice, I'd have said, "Yes, sir," but I just stood there holding on till he got to me and we waltzed the rest of the way.together. Sweet, huh? Guess we could call it "The Two O'Clock Waltz." I had to sit and rest in my rocker on the way back. It is right beside my bed, and Callie, one of our babies was curled up in it asleep. I was only going to use the outer edge of it, but Callie didn't know, and she got down. Once I was back into my bed, though, it was not long until she had reclaimed her spot.
Miss Callie Elizabeth named after AshleyThe ptosis is back today with a vengeance. Drooped lids, blurred, and a touch of double vision
So. what is going on all of a sudden? I mentioned stress earlier, so that must be a clue, huh? Yeah, I think it just might be.
Things seemed so simple when I started this blog. I was continuing my life as it had been, only openly to be able to let people learn about Myasthenia Gravis, a rare, incurable, neuromuscular disease, as I undergo treatments that we "medical team, Jim, and me" hope will lead to remission. I've referred to it as my Road to Remission. Success has been slow, and they've talked of sending me to the Mayo Clinic, but I felt I noticed some improvement recently, and wanted to give it a little more time (think I stated this earlier in the blog). There are more autoimmune diseases, and diabetes as well, making me an atypical MG patient, not responding to treatments as others might do.
The last couple of weeks have brought some drastic changes in my family, and no matter how much you try, there is going to be some stress involved. The procedure Jim had done the day I was discharged from the last IVIg was a prostate biopsy - positive - cancer. He has an appointment this coming Wednesday to find out more about it, and the choice of treatment plans.
At the same time, another immediate family member has received a cancer diagnosis. A close friend is having to be retested for prostate cancer, which he had a few years ago.
For Jim and me, it has been our experience during traumatic times to have our little pity parties, then buck up, and head forward facing the situations. That is what we will do now, only I've got to get the stress under control before I begin my treatment next week. At least that is the way I see it. Wouldn't stress hamper the working of all those little gamma globulins coursing through my veins?
I have two doctors' appointments Monday, and you bet these will be topics of discussions. Interestingly, a couple of appointments ago, my PCP and I, Jim in there with me, talked about my fear of cancer, and now here are two in my family with it. He said with all I had wrong with me, been through, and all so hard to control, I should fear cancer the most which (not meant simply) could be cut out usually, and you go on you way? ( Do not anyone misunderstand him, please.) He was just surprised at my fear, and glad we had the talk. Boy, is he going to be surprised Monday. I've already told Jim I won't be surprised if I break down in tears as we talk. I will if I still feel then as I do right now. Haven't cried, but know I could without much trouble. That's okay.
One moment at a time. This moment is for refilling my insulin pump which I forgot all about. ;-)
Toodles
Striving for a world without Myasthenia Gravis
So. what is going on all of a sudden? I mentioned stress earlier, so that must be a clue, huh? Yeah, I think it just might be.
Things seemed so simple when I started this blog. I was continuing my life as it had been, only openly to be able to let people learn about Myasthenia Gravis, a rare, incurable, neuromuscular disease, as I undergo treatments that we "medical team, Jim, and me" hope will lead to remission. I've referred to it as my Road to Remission. Success has been slow, and they've talked of sending me to the Mayo Clinic, but I felt I noticed some improvement recently, and wanted to give it a little more time (think I stated this earlier in the blog). There are more autoimmune diseases, and diabetes as well, making me an atypical MG patient, not responding to treatments as others might do.
The last couple of weeks have brought some drastic changes in my family, and no matter how much you try, there is going to be some stress involved. The procedure Jim had done the day I was discharged from the last IVIg was a prostate biopsy - positive - cancer. He has an appointment this coming Wednesday to find out more about it, and the choice of treatment plans.
At the same time, another immediate family member has received a cancer diagnosis. A close friend is having to be retested for prostate cancer, which he had a few years ago.
For Jim and me, it has been our experience during traumatic times to have our little pity parties, then buck up, and head forward facing the situations. That is what we will do now, only I've got to get the stress under control before I begin my treatment next week. At least that is the way I see it. Wouldn't stress hamper the working of all those little gamma globulins coursing through my veins?
I have two doctors' appointments Monday, and you bet these will be topics of discussions. Interestingly, a couple of appointments ago, my PCP and I, Jim in there with me, talked about my fear of cancer, and now here are two in my family with it. He said with all I had wrong with me, been through, and all so hard to control, I should fear cancer the most which (not meant simply) could be cut out usually, and you go on you way? ( Do not anyone misunderstand him, please.) He was just surprised at my fear, and glad we had the talk. Boy, is he going to be surprised Monday. I've already told Jim I won't be surprised if I break down in tears as we talk. I will if I still feel then as I do right now. Haven't cried, but know I could without much trouble. That's okay.
One moment at a time. This moment is for refilling my insulin pump which I forgot all about. ;-)
Toodles
Striving for a world without Myasthenia Gravis
Friday, January 4, 2008
The uninvited visitor
That’s what you get when you try to do the normal life with the the *not-normal* body. It plays out on you, leaving you stranded.
I am so very, very tired and weak today and tonight. Totally exhausted. Sitting up requires the head of the bed raised. Laying back on the pillows. No sitting crosswise the bed. :( Jim had to help me a little bit to move my legs as I was getting in/out the bed. My neck and throat feels very tight, so supper will be cream of wheat. It is easy to eat, and swallow. Not diabetic friendly, but fits the other two diet needs, the swallowing and gastroparesis. My neck muscles are too weak to support my head anymore....... why the neck pain....... why I need neck support.
This episode affected my facial muscles, making speech difficult.
I am on the downhill run now, and will be feeling better tomorrow (hopefully).
Toodles.
Knock, knock. Ms. Patient went to open her door. “Well, hello, Mr. *MG Symptoms*. Come right in,” she said, with a lilt to her voice. “Thank you, Ms. Patient. You have made me feel so welcome, and you have made it so easy for me to get inside. But it will be hard for me to stay now, if you take it easy tonight and get some real rest.
I am so very, very tired and weak today and tonight. Totally exhausted. Sitting up requires the head of the bed raised. Laying back on the pillows. No sitting crosswise the bed. :( Jim had to help me a little bit to move my legs as I was getting in/out the bed. My neck and throat feels very tight, so supper will be cream of wheat. It is easy to eat, and swallow. Not diabetic friendly, but fits the other two diet needs, the swallowing and gastroparesis. My neck muscles are too weak to support my head anymore....... why the neck pain....... why I need neck support.
This episode affected my facial muscles, making speech difficult.
I am on the downhill run now, and will be feeling better tomorrow (hopefully).
Toodles.
Tuesday, January 1, 2008
New Year's Day
Bringing Myasthenia into the new year. By 4:00 p.m. I have established that the aches, pains of the arms and legs, exhausted and weak, choking, arm/hand weakness, shortness of breath, not able to lift legs from bed, have to hand lift..... to name a few..... are MG in origin, not another autoimmune, or other disease (I have a storehouse from which to choose ;-), beginning yesterday, and culminating today. It seems to still be building. For the sake of the blog and for memory, it began with the bad headache, and unusually painful feet yesterday. I have fought to make this an *up* day, but have not gained as much as I would have liked.
What?
Well, pain free for one. LOL !! Hunting around Blogger to learn more of how to do things here that I have an interest in doing, hunting blogs to find things others do that I might like to also do (That takes so much time because I get side tracked into reading.). I have some things in a basket at the end of my bed that I need and want to go through. My get-up-and-go, is in short supply...... what little I can find, that is...... checking here in this corner, that corner..... waaaay up there! Nope! It just got-up-and-got away! My legs have hurt without gaining relief today, too. Actually, rather unusual, without something specific I can relate to possibly bringing it on. This is another reason for this blog; to possibly pinpoint what is what, and where it is coming from (I know, not correct grammar, but.... ;-)
Unrelenting. That is the one word I find for this afternoon. The pain is unrelenting, even increasing, and it has gone and brought the neck into playing its silly games. The fingers. When the fingers get like this, I can still type, just not real good. They scream "Lollipop! Lollipop!" I say, "NO!" And all the bodies' cells say, "What is the ONE thing you can do to stay away from the Lollipops?" The sixty-five (65) year-old woman lying up in the bed looking all well and chipper (at this moment), "Put everything away and go to bed."
"Yes, yet you resist rest, total rest needed for the Myasthenia Gravis. That is the nature of the beast, rest is a curative. Just being in, or on the bed is not necessarily rest. Why do you resist rest? Think about it."
This is *part* of the hard part of this blog. Things I do not want to talk about with others, and if I do not do it now, it will soon get lost in my memory. Again, again, again........ this is one of the WHYs I am doing this blog. My daily walk with MG. How does it affect me. Aaarrrgh! It is more like how does it NOT affect me. I went over to the MG forum last night for a while. This is the Myasthenia Gravis Association Forum in case you'd like to check it out. I found it very helpful in understanding many things about the disease, and how people outside the United States cope with the disease. I found Pros and Cons on both sides. Seeing the differences and the whys for them, I can say I am confident to stay where I am, not even taking the choice to go to the Mayo Clinic at this time. Today, I feel assurance in my medical team. I am an atypical patient, and they have no problem being open about this, and I feel confident they will tell me if they reach a brick wall with me, and feel they can do nothing more, and that the Mayo is the best choice for me. But this is now........... Let the Mayo wait until it is needed, or only IF it is needed. I'd rather use that money on my grandchildren, or to go shopping at Cracker Barrel!!!
Speaking of grandchildren. There is one asleep in the living room right now. I think she had a sleepless night at the church Lock-In last night, and though her mama made her take a nap, I doubt she got all rested.
Good night, Christen
Ragdoll Billie
Striving for a world without Myasthenia Gravis
What?
Well, pain free for one. LOL !! Hunting around Blogger to learn more of how to do things here that I have an interest in doing, hunting blogs to find things others do that I might like to also do (That takes so much time because I get side tracked into reading.). I have some things in a basket at the end of my bed that I need and want to go through. My get-up-and-go, is in short supply...... what little I can find, that is...... checking here in this corner, that corner..... waaaay up there! Nope! It just got-up-and-got away! My legs have hurt without gaining relief today, too. Actually, rather unusual, without something specific I can relate to possibly bringing it on. This is another reason for this blog; to possibly pinpoint what is what, and where it is coming from (I know, not correct grammar, but.... ;-)
Unrelenting. That is the one word I find for this afternoon. The pain is unrelenting, even increasing, and it has gone and brought the neck into playing its silly games. The fingers. When the fingers get like this, I can still type, just not real good. They scream "Lollipop! Lollipop!" I say, "NO!" And all the bodies' cells say, "What is the ONE thing you can do to stay away from the Lollipops?" The sixty-five (65) year-old woman lying up in the bed looking all well and chipper (at this moment), "Put everything away and go to bed."
"Yes, yet you resist rest, total rest needed for the Myasthenia Gravis. That is the nature of the beast, rest is a curative. Just being in, or on the bed is not necessarily rest. Why do you resist rest? Think about it."
This is *part* of the hard part of this blog. Things I do not want to talk about with others, and if I do not do it now, it will soon get lost in my memory. Again, again, again........ this is one of the WHYs I am doing this blog. My daily walk with MG. How does it affect me. Aaarrrgh! It is more like how does it NOT affect me. I went over to the MG forum last night for a while. This is the Myasthenia Gravis Association Forum in case you'd like to check it out. I found it very helpful in understanding many things about the disease, and how people outside the United States cope with the disease. I found Pros and Cons on both sides. Seeing the differences and the whys for them, I can say I am confident to stay where I am, not even taking the choice to go to the Mayo Clinic at this time. Today, I feel assurance in my medical team. I am an atypical patient, and they have no problem being open about this, and I feel confident they will tell me if they reach a brick wall with me, and feel they can do nothing more, and that the Mayo is the best choice for me. But this is now........... Let the Mayo wait until it is needed, or only IF it is needed. I'd rather use that money on my grandchildren, or to go shopping at Cracker Barrel!!!
Speaking of grandchildren. There is one asleep in the living room right now. I think she had a sleepless night at the church Lock-In last night, and though her mama made her take a nap, I doubt she got all rested.
Good night, ChristenRagdoll Billie
Striving for a world without Myasthenia Gravis
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