Hello . . .

I am finally bringing myself back together ... nothing seriously wrong, just too many things not working out and, therefore, I rested/slept more than usual!!! But, now, a freind sent me my favorite design program and that is making me happy. Then, to get rid of the AOL-probably not enough space???- I reinsstalled AOL and that is better now and making me Happy!!! I still have a ways to go to get Mac/AOL all caught up nicely. I am so computer illerate ... it takes a lot of my hands holding my head until things finally come to me.

So, during this time, I have finally started using my new graph. My arm stayed swollen for quite a while and when stuck it would leave a BIG bruise(I’m on Coumadin). So, now, that seems to be on it‘s way to being a usable graph. I think it needs to be used for a month before the catheter in my neck can be taken out.

My teeth!!!! Any body want a picture? I look like an ole hag. oh gggeeeewwiiizzz ........ don’t I hate that!!! I was lead to believe that services could be rendered from a dentist that would give me new teeth. Right now, I’m thinking NOT.......???......seems like dentists want their money!!!1 I really don’t know anything specific yet —> things do go up and down!!!

Otherwise, dialysis has been just fine. Nothing particular.

Getting my drugs via the new Medicare Part D has been ok ...... one of my drugs, Nephrovite (a vitamin designed for dialysis patients) can be bought at Target for less than even the Medicare amount. And then, yesterday, I got a letter about Lexapro -> so, I have to figure that out. Otherwise, the price has been more than just right.

Soon, I am going to write it all down about my drugs and their costs. I‘ll write it in here.

Thanks for coming by here.
Sorry, I haven’t been here much for a while.

Any questions?

I’m frustrated, thought I was moving to a place that I really liked ... but, noooooo ... I DO NOT Like this Process AT ALL; I have to go to Richmond next week to have MCV have a looksee at my teeth, they all have to come out ... DUH ... and I don’t know what after that . . .

I’ve written this twice before and I’ve pretty much forgotten what I’m writing!!!

I got back on here so I would get tired and be able to go back to sleep!!! YEP ... it’s working, don’t know what I’m writing!!

I’ve been trying for 2-3 weeks to get the DSL done ... NOT HAPPIN’ ... eventually

I miss being on here ... eventually!!!

hello to SM and L!!! w/smiles

Nobody wants to know an ill person. One of my doctors at Duke told me when I was leaving Duke that some of my friends, because I had been so ill, would leave the relationship. So, I waited and watched and it became a true statement.

I think the same is true now that I am in a wheelchair. A good “friend,” that I did things with for the last several years and have known for many years came to the hospital a number of times, then her mother-in-law died New Year’s Day and I have barely seen her since ... a year and a half now.

Which, actually, I am REAL lucky. I DO have Three great friends ......................they just live hours away ... WV, MD and Germany!!!! Now, how can I call them to come over for a picnic or to go to the movies?!!

I should have my knuckles tapped with a ruler!!! .... I got together with two friends here in this town!!! LK has been helping me out ever since I had my leg off ... she is from childhood and although does not drop in for coffee and tea, DOES lend her shelf to help me out ... busy as a bee she is. Then there is Isola, 84, and also busy as a bee ... only thing she can’t do is get my wheelchair in and out of her bright green bug (suits her to a tee, the bug does).

So, see, when I’m feeling not so great, there always comes along somebody to perk me up!!!!

written Saturday May 13 early a.m.

Have I mentioned my teeth yet? Well, just about half of them have broken off at the gum line. Four in one recent month. Teeth, to me, are the sign of taking care of yourself. And, here I am with one front tooth. Oh my, oh my. That is not a good thing.

The drugs for the transplant are very hard on the body and take their toll in many ways. I figure that that is partially what is causing these teeth to break off and dialysis itself is another reason ... and, they weren’t in decent shape to begin with.

At first, my social worker said something like we’ll get that fixed. And, she walked away from my chair with determination in her walk. Later on, I told one of the doctors [my doctor’s Nurse Practitioner (NP)] and she said something like we’ll have to get that fixed now won’t we. Well, I thought, in both cases, that they knew the protocol for such events. I’m wrong on that! I’m making calls (a couple) and it’s not sounding as if it’s gonna work out real well. See, I am a chicken shit of the highest order when it comes to dental work ... I can’t know ANYTHING about it when it’s happening ... or, I panic beyond belief.

So, I’m on the wait and see plan.

[[Next NOTE: written Saturday the 20th about 3a
I got the form I need to fill out to see how much money I need to pay ... today, one of the doctors knew how this process was supposed to work ... I fill in this form, go to their clinic to be checked out and xrays ... and then go to Dr. Pinch (!!!) oral surgeon and then we go from there!!!! So, now, that’s good information. And once again we’re on the Wait and See Plan!!]]

•~*•^•*•^•**•^•*?*•^•* ? *•?•* ? *•^•*?*•^•**•^•*•^•*~•

Let’s see, I don’t think I have said anything about my hands ...? They hurt ... tingling/stinging ... small spots of pretty intense pain ... sometimes they hurt right much (did you catch that Southern, ‘rite much’? ..!), other times they seem to back off and be more comfortable. I’ve talked with my doctor about them. He had xrays taken; it’s not arthritis; he doesn’t know what it is. I thought it was neuropathy—common from being a diabetic.

So far as I’m concerned, I get the feeling sometimes that they are just gonna keep disintegrating and I won’t be able to do anything with them. Then, it really will be just me and the TV.

[[Another NOTE: written the 20th ...same doctor said today that there is some arthritis ... ok, DUH, somebody for realy gonna let me know? ]]

•~*•^•*•^•**•^•*?*•^•* ? *•?•* ? *•^•*?*•^•**•^•*•^•*~•

I’ve been talking about my new graph from time to time ... it’s still a problem. It seems like it is still being Hard to stick ... it’s continually swollen ... a bad stick creates a bad bruise that seems to last for a couple of weeks. The new graph needs to be used for a month w/o problems before they can take the catheter out of my neck. Looks like this catheter is in for a long haul!! I’ll be talking with a head nurse whose specialty is graphs on Monday. [[DIDN’T HAPPEN]]

Again, I’m on the wait and we’ll see plan. When you’re an ill person, there is A LOT of that. The better you learn to get along with the Wait and See Plan; the better off you will be.

it is ALL IN THE ATTITUDE.
DON’T FIGHT IT; GO WITH THE FLOW

My apologies for all the things I have repeated ... I’m not going to go back and reread what I’ve written ... this is just like things in life, you don’t think about it just one time ... things like these subjects are constantly on your mind until the next level comes along.

thank you
Mandala

I’m dropping in for a short notation . . .
The nurses have been sticking my new graph recently. It got very bruised a couple of weeks ago and I had to use the catheter while waiting for the bruising to go away. I am on Coumadin, that makes the bruising more prolific and each time I have to wait.

I guess it’s coming a long ok..?? It’s the Coumadin.

Otherwise, I’m writing information about our clinic (it is one of the best clinics in the country) and about Home Hemodialysis (one of my doctors has put in a lot of effort to make this a well known subject amound the renal doctors). Home Hemodialysis is, so far, the best dialysis there is.

Any questions?