Saturday, December 27, 2008

WHEW! IVIG and Lithotripsy are a pair but done!

The IVIG started late on December 15th, and turned out to be a pretty rough week of it. The lithotrypsy was a real doosey that set me back, waaaaay back, and I am still coming back, even when I thought I was coming back. I was about to text my sister this morning that I was doing better, and then, ohhhhhhhhhh untangle yourself and understand how badly I feel. Awwwww. Now. That feels better. I have been trying so hard to compose this blog, but there is no way I can get it done, so I am posting it just with the "girls" pictures, and no explanations of the week I had. Went and got my hair done before I left on Sunday, and that probably helped somewhat.

However, I am not doing well at all. It is talking me days to compose and post this.I know nothig about the back surgery coming up. I will keep you updated as best as I can. I still have my humor!! Jim and I cannot do without that!

After the nurses' Christmas party, they came tripsying into my room bouncing and singing, these caps on their heads, laughing. We took some pictures. I was Rudolph. Aren't we silly?

For now, good-bye for a while so I can can take care of myself. When I feel able to post again, I will do so.

Monday, December 22, 2008

Lithotripsy - Nothing to eat or drink!

The day is finally here. Putt, putt out to the trailer in 11 degree weather outside the warmth of the hospital.

Brrrrr...... I'll have to wrap up warmly this time for the few feet I'll be outside. I'll bet I'll be one of the few patients who has made that trek the most times, and I STILL will not be done blasting those stones away, just hitting the largest one, the one a size of a dime today in hopes that will be sufficient for the go-ahead for the back surgery.

Who in their right mind would be anxious for back surgery? Anyone who might be looking at less pain, better walking and stability, and a myriad of similar things. Please just bare with me as I recover from my IVIG last week, and this today, Christmas, and then I hope to be back on track once again!

Just in case I do not get another post in here before Christmas, here is my Christmas wish for you, and I do hope you have a good one with LOVE flowing all around with those whom you love.

Friday, December 19, 2008

IVIG finishes in about an hour, then HOME!

WOW!! What a week! I am ready to get through with this drip, and get headed home toward Blytheville! Just as quickly as I can, I will be updating here.

See you real soon.

Tuesday, December 9, 2008

I quit!

Well, I would quit if I could, but with a diagnosis of Myasthenia Gravis, severe neuropathy, and a ruptured disc, I don't guess I have much say-so over very much. Tomorrow is my appointmet with Latif, my diabetic doctor. All I want to do is go the other direction to Jonesboro, to St. Bernard's Hospital and start my IVIG treatment NOW.

I guess this is the way it is going to be until we leave Sunday. There are a few things I can try, and will use them for the trip tomorrow. Alas. As before, I WILL endure. I WILL make it. Like it? Not in the least. It just will not be the most pleasant time, but for how long have I been coping with these diseases? My feet, especially the left one hurt so bad it had me back to the tears again this afteroon. A little med helped, and then while eating, I remembered I forgot to replace my patch the other day when I took it off. THAT will make a big difference right there, and I will get it on just as soon as I finish here. In fact, I stopped and put it on right now. Done. See you later.

Sunday, December 7, 2008

Are the IVIG side effects worth the treatments?

A resounding YES!

The fact that I am doing this is evidence within itself.

The fact that I have the energy to become involved with outside interests such as Coleman Larson and Childhood Cancer is another.

The fact that I have the energy to email some again is reason enough.

There again, fact that I have the energy to join up with Twitter and Facebook is reason enough, though it does tire me to *talk* to people in their respective groups. :::sigh::: The fact that I am doing this increasingly is another BIG reason!

See what I mean? None of these are all of the time, and actually doing them weakens me.

Yes, there have been ups and down within the past year, with mostly many ups these past six months since we have been pushing the IVIG infusion rate to eight hours, and now to six hours last month. I'd really like for them to analyze that as to why I started to do MUCH better whenever I started taking it at a faster rate. The headaches were worse, duration was shorter but more severe. Let's see, the last one started three weeks ago Monday, and the side effects are definitely waning, and I can see the improvement in the way I am feeling.

IF I could walk, I *think* I could live somewhat normally, AND they are feeling that my impaired walking is possibly due to the ruptured disk, and NOT the myasthenia. None of this is going to get definite answers until after the back surgery, and I am very hopeful for some improvement following that, as I think Dr. Cauli is, too. As Dr. Campbell said, they normally would not recommend surgery on someone my age, with my multiple physical problems, and with the danger of the MG added to the pot unless they felt it would make a significant difference.

So exactly what are they looking at improving? Bladder and bowel functions, neck and spinal pain, arm pain and weakness, and to me, the best of all..... leg pain and weakness with the hope of at least walking somewhat better once again. Wow! If I were able to be up and about within the house, it would be a dream come true.

It would mean reaching down that road to remission!! Remission meaning to me reaching toward a life of normalcy, normalcy being able to function in the world as most people do..... walking and doing most things for themselves. Ha! Getting up and getting a drink for themselves rather than needing to have someone else to do it for them. Maybe even preparing a simple meal for themselves. Oh, wowie! Would that not be grand. I might could even clean my house!! Listen to me! I go bananas thinking of the possibilities. At one time I thought I never wanted to have a surgery of any kind ever again, but now I am thinking of it differently. At one time - yesterday - I even thought I'd never walk again. What? Maybe. The possibility is in the air now. Am I prepared to be disappoined since the surgery is not a 100% guaranteed. Well, Jim's cancer surgery was not guaranteed either. No surgery is guaranteed. And surely Brenda's two surgeries were not guaranteed, and now her CTs say she is Cancer Free! Both of them. Everything points to HOPE.

My best Christmas present probably after Christmas, I guess, would be the successful back surgery. I'd like to have it just after my IVIG coming up this month. That's just me without considering others. Ummm maybe I should put a poll up here. I'll think about it. Just to see what others think.

I've got to run along now and get Coleman's update posted. Make-A-Wish came to visit him last week! Wait until you see!!!

Coleman in front

Michelle & Lori of Make-A-Wish Foundation
(I don't know which is which ;-)

Friday, December 5, 2008

No lithotripsy afterall

What a mess. We *did* make it to Jonesboro for my appointment with Cauli yesterday, but we might as well have stayed home. It was strictly a check-up to see how I was coming along, and no changes were made at all; we're keeping the status quo until after the back surgery.

Yes, the back surgery. What about it? After the lithotripsy right? Well, I had to cancel it for today. I am a horrible mess. When I told Cauli about the episode with my feet and legs from night before last, he said "Get that surgery soon!" So, he is thinking a LOT of my pain and problems is coming from my back. Campbell, my back neurosurgeon, wanted me to get the stones taken care of prior to his surgery, but I am having an MG episode (not a full crisis) and have had to cancel today's procedure to blast the dime size stone in the left kidney. Things would have been more hopeful if I had not had to make the trip to Jonesboro yesterday. I slept all the way over there, felt too bad to stop at the mall for some socks for my new black shoes (Sandra, Cauli's nurse got on to me for being sockless) and a couple of other things seriously needed. Now, for ME to say I do not feel like stopping by the mall, or just going into Dillard's, that is a VERY good reason to suspect I am not feeling well at all. My throat hurt so we went by Sonic to get an ice cream of some sort. They didn't show the new banana shake we have here, but then I remembered their coffee drinks. Their latte is actually pretty good, and they have an iced latte, but I was not sure if I would like it or not. So, this is what I did, I got my usual hot one, but got the smaller iced one to try it out. It was good, but just not enough of it for the cost. There is another one that I cannot remember the name of it that I want to try the next time.

Okay, this is as much as I can do. I've been asleep, and just now woke. No way could I have tolerated the lith today. I'll sure let you know what all is going on whenever I know what's going one.

Wednesday, December 3, 2008

Back out again

I don't what the deal is, but I am back down again. Very easily could be the stress of having an appointment with Cauli in Jonesboro tomorrow, and then the lithotripsy Friday in Memphis. Whatever it is, I'm just a-feeling poorly today with it hurting to sit up straight, but..... that is the way I am suppossed to stay all the time. Bummer!! I've got to go looking for something to cheer this up, and maybe at the same time, it will cheer me, too.

It very well could be that I might be suffering from the same thing that happened to this poor fellow right here. Final diagnosis has not been rendered yet, but I have a suspicious feeling he and I suffer from a similar disease, and I don't bellieve it is MG.

Sunday, November 30, 2008

Come meet my ragdoll

You have seen me using "Ragdoll Billie" and might have wondered why in the world I have chosen that particular nick to use. It comes with the Myasthenia Gravis as a descriptive example.

Without proper treatment that is how we can be, and there have been a few times that I have been that limber, you know, flopping arms/legs, loose neck/head, especially on
the day at the dentist. "Oh, Mom, no legs have I!" At that very moment in time I fully understood the *ragdoll* example. In fact, right now I am having trouble typing because my arms/hands are so weak and trembling when trying to use them. Those muscles hurt then afterwards. That is the MG. It does not cause pain per se, but from overextended muscle use. It is just SO hard to obey the STOP sign. I have gone and come back to this point, with a light snooze in there, and my arms/hands do feel better, but the strength will not last long. My legs are similarly affected, but I am not up on them very often. :(

Ya know what that means, don't ya? Means more rest, especially with an appointment with Cauli in Jonesboro Thursday, and then - are you ready for this? Another lithotripsy Friday in Memphis at Baptist Hospital! We just spread the joy and $$ all around.

She enjoys company so I will leave her here with you to play while I go ahead to tend to other things. Come back to visit another time, won't you?

Now I just need to find some music for her (and me, too). I did a little special *dressing* to her to make her my own, and I just love her to pieces.

She is liable to show up any ol' place, at any ol' time, so keep your eye out for her!

Oh! She looks much better in full size as all of the photos do, so, as always, click on her so you can see her true beauty.

Um, I have also found a friend for her, too, so look for the friend one day, too.

Well, ladies and gentlemen, here she is after looking high and low, *My* Ragdoll!

Saturday, November 29, 2008

In the interim

This rest has been good for me. I definitely am doing better with the headache all but gone, except for a little here and there, and none working into the severe status. While *down* resting, sleeping, or just whatever, I have worked on the great-grandchildren's photos doing decorative work with them. I will start with the granddaughters next, but I still am not going to push myself. Rest is the first thing a myasthenic does for him/herself. It is amazing how restorative it is if your problem is MG based. Cannot say this is a 100% situation, but it is the first thing I should do for *MY* Myasthenia, and the hardest for me to accept! My eyesight is also very bad, with no clear vision at all, and I have had to increase the Mestinon. Means more rest, and being careful not to overdo it. With Christmas, I will be adding bits and pieces to my posts. I love Christmas. You will see that Kaitlyn has already begun decorating for Christmas in her picture as you view them. It thrills me that my digital abilities are returning.

For this cause, I am going to still take it slow and easy for the next few days now. We had just had so many doctors' appointments, the IVIG and other things, and with one on top of the other, Humpty Dumpty just came toppling down when the IVIG hit, I believe. All of this is still handling the IVIG much better than I used to do when I would have to sleep for two to three days after I came home. Interacting on the web is also very stressful for me, too, and I have to watch that, and remind myself I am not what I used to be, nor can I do what I used to do back when ................. oh, my goodness it's been back seven or eight years ago in Ring World days for me.

I guess you can call this *check-in* time for me. There has been a bit of excitement for me as I have found several CDs of PSP tubes from back around 2000-2001. So far upwards of 4,000, and it has been so much fun getting to use them again. Stay tuned, as I believe I will be able to post at least a little bit now, but do not feel it is time, yet, to place too many expectations upon myself.

Here are my four great-grandchildren, each in a photo that I have *played* with beginning with the oldest Matthew. I hope you enjoy. I had fun just playing around with them. Matthew, Kaitlyn, and Alexander are all from cell phone pictures. Please, be sure and click on the pictures here and view these in full view to be able to see all the entracacies I have done. Yes, I have used PSP frames, but have taken them on a bit further to make them *my own*. Before MG knocked on my door and pushed me down, I was making my own frames, so I still have a ways to go yet before returning to *beore* land. Enjoy.

Tuesday, November 25, 2008


UPDATE: I was able to finally get some sleep last night, but the headache came aboard very shortly thereafter. Until the pain has slackened I am not going to be posting unless it is photos, and thinking of doing that sounds good and maybe even refreshing right now. That way, I can sleep as long as I need to ward off these ole scalawags, the most horrible things I have encountered!! It is somewhat relaxing to fiddle with my computer graphics, so I may find myself doodling with that, or just plain reading.


Here is a video I *played* with, doing different things. I took the pictures holding the camera above Ashton with my right hand, with him lying in the crook of my left arm. As you can tell, no focusing. At first I had a story line to go with the pictures, but that made it even MUCH longer than it already is, and I still may go in and shorten it now that I know some things to do. FUN!!! Too long? Just stop it. ;-) Shocked me whenever I got the music and the pictures to end at the same time.

Till later . . .

Monday, November 24, 2008

IVIG in six hours now

In July when I transferred from inpatient to outpatient status, I was infusing 1000 at 12.5 ml/hr which took forever and a day, literally just as it sounds . . . forever, and then a day! Being inpatient, to whom did it matter, I guess. Anyway. I then found myself in a situation of needing to get that IVIG pooled blood infused by 8:00 p.m. each evening! THAT is MUCH faster than 12/5 ml/hr! MUCH, MUCH faster. It was either I push it faster or I had to stop the treatment. Don't tell me Dr. Cauli didn't know what he was doing. There are also some people you do not give an either/or situation. You either do it, or . . . ! I did it! Now, this was all in one day's time. The pharmacy did not know I was coming so no pre-planning, or expecting me, or anything like that. The IVIG had to be prepared AFTER I checked in each morning in a formula something akin to ?grams/kg body weight, the doctor filling in the "?", and the scales, ahem, filling in the "kg" for the body weight. You should SEE the size of the scales used to weigh me!!! It is a scale used to also weigh a patient while still sitting in their wheel chair if they are unable to stand, so you can imagine - oops! maybe you can't, so I'll take a picture next month . . . you remind me, okay? - anyway, for now, you try to imagine the size of this scale that is large enough to hold a wheel chair. You will, won't ya?

"?" grams/kg body weight

I am so sorry. I got this far but the headache has just become unbearable. I am just shaking and sobbing with shooting, stabbing pain. All was fine, and all it took to fire it off was getting up to use the potty chair here beside my bed. WHAMO! Scalawag! Deadly, ole mean scalawag!!!!! Yep. Exclamation marks for sure. Not over emphasizing one lousy bit. I had already cancelled tomorrow's appointment with Cauli because I was feeling so bad. It was only for a follow-up. ONLY? That's it. I can't stand it any longer. So, till later tonight or tomorrow morning or whenever, this is it for now.

Till later...........

Saturday, November 15, 2008

Perioperative Nurse of the Year

I received a text from my son yesterday afternoon. He was forwarding a text he had received from my favorite daughter-in-law. It read: "All my coworkers voted me the perioperative nurse of the year. I got I50.00 gift card and a framed plaque!!"

Now, haven't I been telling you I have the best daughter-in-law in the world? She says it is because she is the ONLY one I have and I keep telling her that is not true. She could be the only one, and still not be the best. Read on. You will see.
This picture was made back in February'08, when we met as a family to discuss how we were going to handle things when Jim had his prostate surgery, what with me being confined to bed and needing continual care. We had never drawn a congregation like this before, and I will tell you that Jim and I were more than a little bit nervous. We were already nervous over his cancer, and the upcoming surgery. We had always done things, just the two of us (no choice), and there had already been intimations of them (the kids) having some ideas of "doing this," "doing that," and I'll tell you it did not feel good to us. And who was right there in the middle of things, speaking her opinion? Yeah ::nodding head:: you got it. Not butting in, but blending in as a family member, loving and being loved, ready to do her part in this family drama...... taking care of Pops (that was hard to write, Donnie, because I've never been able to migrate to that name - it belongs to you and Jim)

Each morning everyone in the family, friends and co-workers receive a Good Morning text message from Donnie. We can usually tell whether she is working that day or not depending on what time that text come through. Believe me, they do not come real early on the days she is not working. She is catching up on that much needed sleep.

Donnie worked in manufacturing plants and steel mills from age 16 until she and Jim moved to Mississippi in 1998. They had only been in Senatobia a few weeks when she decided to go to college instead of finding a job. After three years of full time schooling, she graduated with honors from Northwest Community College, Senatobia, MS, in 2002 at the age of 37, whereupon she went to work at St. Francis Hospital, Memphis, Tennessee. There is no doubt about it, Donnie loves nursing, and Jim says he believes she was born to be a nurse. Her heart and character gives her a natural instinct to take care of others.

There seemed to be something missing, or maybe not quite befitting of Donnie with the use of the word "instinct" so I looked it up to find all the definitions, and here is what I found.
an inborn pattern of activity or tendency
a natural or innate impulse, inclination, or tendency
a natural aptitude or gift
Of those, I think of Donnie as having a natural gift. There is something Special, something Spiritual about that portrayal, because when God made her, he made her something special right from the very start.

Donnie, I could not find very many pictures of you with which to create this video, my very FIRST video, because you are always the one behind the camera catching memories of your family. Ummmm, sounds like someone else of whom I am vaguely familiar.

As you have stated that you are glad to be a part of this family, let me say that WE are glad to share our lives YOU. Please accept this video as a token, a tribute of that union which is just a branch of that one you and Jim share together.

We love you, Donnie, and are more proud of you than words can tell.

Saturday - a day of action as I clean house!

Today is a day to clean house around here, plus getting ready to go Jonesboro for a week of infusion. Oh, how I hope I can stay awake, but if I cannot, you will be seeing myasthenia in all of its glory...... blah!!!! I do NOT feel bad at all. Maybe a nice very, very cold coke will perk me up, plus reading some twitters will do the job! Let's GO!

Thursday, November 13, 2008

Taking a look at Dr. Moacir Schnapp -my pain specialist

My apologies. I have had a myasthenia sleep session. Very necessary, and very helpful. If *I* do not take care and get the needed rest, my body will take over and do it for me, which is what happened today (Friday). Sleep, eat, work until I'm out again, over and over. NOT the way I like it, but just the way myasthenia is, and if you have been with me throughout the months, then you know this is just the way it is, and I'm probably good for the get go for a pretty good while now. I am leaving the date the same as when I began this. If I need to, I will explain the days for explanation. This is supposed to be for myasthenia, and this is myasthenia alive within my body, so I feel it is relevant to show how it works. I've truly been a ragdoll today (Friday). Wish they had used "weak as a kitten" back whenever it was that they came up with the nick (long before my time, that's for sure). I'd much rather be a kitten, than a ragdoll, though, but I'm just prejudiced towards kittens. I did see a ragdoll at Cracker Barrel yesterday. Jim bought me several sweaters and warm tops there. I'd like to stop and shop once more like when we get to Jonesboro Sunday. I'll have to check my bank balance before leaving Sunday. Jonesboro has a Cracker Barrel, Blytheville, NOT! That's a Bah Humbug! Having the clothes makes me want to get out of this bed and house!!!!! Especially this house!

I had some good articles prepared, but during one of those sleeping periods, I just lost it all. Couldn't remember what it was, so I have to do with this.

On the road to Dr. Schnapp's office:
That is me at the top of the map,
traveling on down I-55, first to West Memphis, AR

then crossing the Mighty Missisip
(I grew up on it's banks at Helena, AR,
and crossed it's ferries there)

Today (Thursday) we went to Memphis for my appointment with Dr. Schnapp, my pain specialist of many years, beginning back when I had my first ruptured disk, L5-S1. I have dealt with chronic pain on the left side, from my hip (lower back) to foot since 1991 or 1992, getting nerve blocks periodically as needed when the pain became unbearable. Oral Darvocet n 100 was my acute pain medication I used leading up to each block.

I do not recall a block not being a success. In addition to treating my physical problems, he was also kind and compassionate. That is something hard for chronic patients to receive. Once "something for pain" is mentioned, doctors tend to freeze right there on the spot, don the cloak of almighty judge, and usher you quickly on your way with no treatment for whatever is or might be causing the pain, nor trying to help to relieve the pain which feels like it is dragging you down the miry path of destruction, physical, emotional, and all else. All of it together works to destroy all life that surrounds you. Where will it, where will you end? I had one doctor in Blytheville who actually handed my records back to me, and did not charge me for my so-called visit. He judged me without laying the first finger of examination upon me. Just his summation that I was a junkie looking for drugs, though I had been referred to him by one of his peers. What to do? Unknowingly, I had Myasthenia, Neuropathy, and some other things wrong at the time. Writhing in pain, a young child pulling on my coattail.

Okay, so that is the beginning from yesterday that has ended up today, and I fell asleep and had a GOOD night's sleep.

Schnapp, my buddy, glanced over the latest updates in my chart, and let out a big sigh, "Billie, Billie, Billie. Thousands of dollars in drugs, and shaking his head as he said it. I think he says this at every visit. We immediately went over what could be helped vs what could not. Such as, and here is the picture: the pain and weakness. I have three contributing factors: neuropathy, myasthenia, and the ruptured disc. He said, "I cannot fix the neuropathy, I cannot fix the myasthenia. The ruptured disc is the only thing left I can fix, and that can only be fixed with surgery, and that is not a guarantee." So. My long trusted doctor/friend whom I trust, had just repeated exactly what the other doctors had said. He even drew me a picture of it all. Had I not known better, I'd have thought they were all reading from the same book.

On my pain management, Jim made it clear to him that I wanted him to know I was using the lollies for more than just the headaches, because my legs, back, and neck hurt so excruciatingly bad, especially during the night. One night earlier in the week, it felt like my legs were being soaked in ice water, and nothing I did could or would help them, and no matter how hard I tried, I could not wake up. Kind of reminds me of that day in St. Francis when I had that thrombotic event, and was unconscious for a while. Ohhhh, rather scary thought, especially right now when it is nice and comfy in here, and though I have socks on my feet, they and my legs are quite icy cold. I can tell the pain med is covering a pain all the way up my legs. Callie is lying down there now between them giving me a little extra warmth.
(That is Schnapp on the left)
Jim gave him the marinol prescriptions that we had not used, nor planned to use, plus the Loratab that Gubin had given me after the Lithotripsies. We try to keep him well informed about the drugs. I try to act responsibly in their use, and sometimes I feel I do not use them as often as I should, under the doctor's mantra of keeping their patient comfortable and free of pain. It can be difficult to decide just when is the best time to take them, and I am prone to wait too long. But with the ruptured disk now, I am listening to my body whenever it hurts, and not making it go through hours of excruciating pain with hours of tears. I'm treating the pain. If I run out of medicine using it responsibly, then I will contact Schnapp because I have built my reputation of being responsible with them. I do not like taking the drugs, but if my body is in a state of needing relief, then I am going to do whatever is necessary. I sound like I am defending my use of my meds, but I am not. Rather I am showing how I have established myself as responsible with them. I don't think I will ever feel comfortable taking these, no matter what, and it is *me* I am trying to convince I am doing it right every single time I put one in my mouth, stick a patch to my body, cut open a lollie. I know I am looking for reassurance that I am doing it right. Yesterday he gave me that reassurance once again. It was just quarterly visit time for him and for him. All was done. Over. Something he and I have to do. Thank you Federal Government.

We got to his office early, with time to spare, and were seen very quickly. Then we were retracing our tracks back north in no time at all, stopping at Cracker Barrel in West Memphis for lunch. They had the cutest kids clothes, Razorback stuff, all kinds of women's sweaters/tops..... Christmas galore. That's just about it! I'm sure to be missing . No one could remember all they had. It was on the road to Home Sweet Home!

We're off to see the wizzard . . .

. . . and it's not the Wizzard of Oz. That is where Oz Girl lives, and I wish I were going to see her. I'll just wave to her. I'm sure she is watching.

But, no, it is Schnapp, my pain specialist, and it is for my required quarterly visit. We should, that is s.h.o.u.l.d. be back fairly early this afternoon. That would be nice. Last month's IVIG is just beginning to wear off, and I have things I *need* to do to get ready to leave before we go.

See you when I get back. Here is my transportation for the day. I see my pilot is ready to go.

Daddy tries on glasses while mommy takes pictures to check them all out later.
He's prepared for the bright sunlight.
"How do I look in these," he asks. "Too girlish?"
He wanted to wear this cap, but they just were not sure of it.
The company might not approve of a Mountain Dew cap.
He likes it, though. You can tell.

Wednesday, November 12, 2008

"Get up and go day" is near

This coming Sunday is "get up and go day" again. Having been there for the port surgery, it seems like IVIG infusion is coming around much too quickly. I am going to do my very best to be ready to go in the afternoon. I want to stop by Circuit City and see if i can find what I need to download my Sony photo card. I really like what I have for every other camera, but you know how it is. Blegh! There's always got to be one. I'm anxious to see the pictures we took on the 31st of the bales of cotton. It is funny that those on the way to Jonesboro caught our attention for picture taking more than those at the gins here close to home. Reminds me of the kids always acting so good when away from home, but let them walk into the house, and within minutes, they were at it. Doing this blog has brought up so many memories. Not necessarily spectacular ones, just everyday living ones. Except for having trouble keeping up with things, life was pretty good. I could go off on a tangent right here very, very easily. And one day I might.

Ashton is doing great this morning according to his momma.

Let's see if I can't find some pictures to share on rainy, lazy days like we are having today. I have enough from over the past five years since Matthew (great-grandson & not shown here today) was born to fill in on any hard to *think* days, and that is without scanning those many, many years before then with my SLR and one-shot cameras. All I need to is to hook up my 35mm scanner and get my slides down here, and oh, my at the history that would burst! Oh, but I've been talking about getting my *stuff* from upstairs for so long, and nagging, nagging about it, they think I'm what? I know what to do, but just need a few arms and legs to help me make it workable. Do all *impaired* individuals go through this? I know there is more I could do that is just mind and matter (computer related). For instance, I could make me a graph to chart my blood glucose. like I had before. That does not require any body involvement, just my arms and hands, but like today, plus about a week prior, I have had to compensate using my fingers due to worse weakening of the outer fingers and arms. Cannot feel much with 4th and 5th fingers of right and left, and for sure have very little use of them. Of course I don't realize it until I go to use them as I normally do and they do not produce any results. Bummer!!! When typing (and I was an 80-90 wpm typist doing transcription) I have to take my right hand and hold down the left shift key when needing to use it. Just look at all the *I*s used just in the past few sentences. Then other times using that key. Sure slows me down, frustrates me, and makes me lose my yen for doing it. By the time I get along, I've sometimes forgotten what I was even writing from the beginning of the sentence. There are other things involved that affects my computer work that I used to do, too, and I am working really hard at restoring them (remembering how to operate specific software), but they just are not here yet. I need to recognize this, as well as everyone else. I had the tremors so bad a while ago that I could not control my hands at all, and I had to take a muscle relaxer. It is just now beginning to take effect. Jim just came in with supper. Taco salad. Let's take another BG and see if things are any better, before eating. My pattern is showing up exactly as always, and I had to take an injection about 30 minutes ago. Rise in the afternoon, drop at night.

Well, I fell asleep, and just been awake for about 30 minutes or so. Here goes. Ready to close up shop.

Ashley and Ashton, what a pair. He loves his momma!
Aren't those some pretty blue eyes?

Then, there is just Ashton by himself.
I cannot find the words to describe this one.

I guess this one sums it all up.
So there!
What a mess!!

Tuesday, November 11, 2008

Happy Birthday and Veteran's Day

Yes, I know it is not called Veteran's Day any more. It is my daddy's birthday, and I'll still call it Veteran's Day for myself. but I think I saw it being called Veteran's Day on TV. Maybe I've got it backwards, huh? He is no longer alive. When I was a girl growing up, he used to joke and say they created a holiday just for him. I wish they had. He deserved it. For many reasons. Though wounded in WWII, getting hit by shrapnel, going to France to the hospital, then home with a huge hole in his back, life dealt him more blows than the war ever did,and they lasted until he died.

He called me the night he died. Why did I know that conversation was different? Special? The Dorrises and Cunninghams were over after Wednesday night prayer meeting, and I gone into the hallway to talk to him. For some unknown reason, talking to him made my heart beat faster, maybe even a bit irratic, or something. I don't know, but there was something to my demeanor that made Jim ask me if something was wrong. He wanted to know if I wanted him to talk to Daddy because sometimes his calls could be difficult to handle. Depending on what he had had to eat and/or drink. But, no. It was okay. He was talking about his life. He had already talked about Brenda, and there was a definite lilt to his voice when talking about her. That's okay. He had told it all to me before. Now, he was telling me that I had given him the most important things in his life. His three grandchildren. Jimbo, Robert, and Debbie. He did not know he had a great-granddaughter Jennifer. We were taking her, Jennifer, to see him the upcoming Saturday. He never got to see her nor the three grands, because he died that Wednesday night sometime after talking to me. We never knew what it was of, except that we knew it could have been the emphysema. That begins a story that is MUCH too long to begin here, tonight. I'm just so very exhausted. Good night to all.


Robert - forever 16
Debbie - First babyFirst great-granddaughter
First great-great-grandson

Sunday, November 9, 2008

Catching up and moving on

An update on *My* Myasthenia Gravis: I was really pleased with my ability to walk from the bed to the bathroom while we were in Jonesboro Thursday night. I told Jim I wanted to try walking to the bathroom rather than riding the chair in there. He looked dubious, but let me try it. I've been telling him that if I do not try things with him there, then he will never believe me whenever I say I can do it. He stands nervously by as I attempt what he considers the impossible.

Here is a picture of my side of the room to show just how far it is from the bed to the potty. My chair fits just exactly between the bed and stand, with the sink and bathroom almost exactly at a 90° turn from where I am taking this picture. That is as close approximation that I can give for the distance I walked...... about five steps.

Comfortably I get out of my chair and take off running easily toward the bathroom door, my legs feeling substantial beneath me. Back into my chair, dressed for and into bed. WHEW! Tiring but exhilarated. Inserting here, when I checked in to One Day Surgery Friday, I weighed, and was able to walk upon the scales more easily more easily than ever before. Now, I'm not blowing this out of porportion, nor have my expectations so high that they will not last nor are unattainable, but it does give me reason on which to base *some* hope.

I *have* had some considerable depression, and do not know what to do about it. I am not happy with my current status, but what can I do, for I think a lot of my depression is environmental.I *have* had to take a few mg of mestinon for about the past month or so, maybe six weeks actually. We talked to Dr. Cauli about that and he said to continue doing it as I considered needed. Stress is a factor. My eyesight has been pretty bad lately, and that is one thing I judge the MG status, and about how much and how often to take it.

My speech is clearing, too. Whereas my mouth muscles had been terribly hard to maneuver, *I* think I am speaking more clearly lately. I had not thought about it until writing this, so that is a good sign that I have not been stumbling when I talk. I can almost say "differentiate" later in this blog. Hip hip hurray!!!! In fact, everything seems to be a *bit* better tonight, and was when we were at the hospital Friday. I was able to carry on a very decent conversation with Dr. Phillips (Phillips County)

So, what is coming up this week? Tomorrow we head for Memphis for a CT at my urologist, Gubin, to check the "loaded with stones" status. There has been a lot of pain on the right side, and downward, with significant bleeding. This makes me think it is all caused by the urethral caruncle, and hopefully not the stones. Elimination of the caruncle and previous stones occurred about the same time before, so it was hard to differentiate tell from where the elimination of pain came. The bleeding also stopped at the same time, too, as well as recently when I have restarted the medication for the caruncle.

Then, tomorrow afteroon I see Latif, my endocrinologist for my diabetes, and hypothyroidism. That I am looking forward to. He has always been one to help me, and get the things I needed, and given me the information I needed. For instance my chair. Two and a half years ago he was the one who got me my chair. Back, earlier this year, he is the one who told me what my infection was all about that I picked up in the hospital with steaks going up my leg, and they gave me an IV antibiotic. Staph. My hero. Wish he would let me take his picture for my records.

Thursday! My man Schnapp! My pain specialist. He was in a bad mood the last time, plus I didn't feel very well then, either. We didn't gel at all. Bless his pea picking little heart. With all I am dealing with, I guess we do get along with my doctors pretty well after all, especially from what I read from other people. But then, maybe other people don't try hard enough to get along with their doctors. None of us is perfect, no matter how much education or whatever is or is not behind our name. There. That's some liberal sleeking out. Actually......... well never mind.

So much for now. Can't think of anything else. Except, oh, yes...... I am still losing weight, and the reduction in Prednisone is not bothering me at all.