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.