Stayed in bed. . . .

I thought a day in bed, or at least half of it would be beneficial. I don't know if it was or not. Sure doesn't feel like it, but then I haven't been vertical long enough to actually judge the day. I could blame it on the weather. I could blame it on fibromyalgia. I could blame it on arthritis, bursitis, sinusitis, or old age-itis. I suppose it doesn't really matter. I feel like I've been horse-whipped. I'm really looking forward to this winter. sigh! I will feel better. I will! I WILL!

~da grandma

More Whining!

Made the trip to the dentist today. The girl worked for an hour trying to fix my problem with not much luck. She pretty quickly fixed the place where they were rubbing really bad and I have a big sore there. I have two post that are suppose to "click" onto my lower dentures. Only one of them clicks at a time. I can get them both to click, but not at the same time. Kind of like my mouth is warped. And I tried so much that I think I made my gums sore again in another place. Big Sigh! My head hurts, my gums hurt, and I'm just miserable all over. Time for drugs!

~Later

Home Again

My teeth aren't quite as exciting today. I have sore places on both jaws and it's impossible to chew anything that resists. The dentist told me to call in right away if I had any sore places and not try to just outlast them. So I said okay. That was Thurs. Friday I called and said we're coming through Nashville, is there any way I could come by. Well, sorry but they close early on Fridays so Monday would be the first day I could see him. I have dialysis Monday so they put me down for Tuesday. So much for seeing him right away! Pardon my whining. I'm just very tired, and throbbing gums isn't conducive to peace and tranquility right now. I'll be better soon, I promise. ~Later

Teeth can be exciting!

Just got home from dialysis which went good today. No problems. The only problem as usual is my backside. I didn't take my big pillow for sitting on. Thought different stress might help. I was wrong. We have more traveling today and tomorrow and then church Sunday (lots of sitting), and dialysis again Monday. Hopefully, Tuesday will bring some relief!

Went to the dentist yesterday for the last of the work done on my implants! Yahoo!!!! It's amazing how well they fit. He did some measuring and grinding, etc. and I may just bite somebody for the fun of it. LOL I may have to have some tweaking done, but that's all. I'm really excited about them. They don't move at all. I'll have to build up some strength in my gums as they are not used to that much pressure being given them to chew. Never knew that new teeth could be this exciting. Thank the Lord for modern technology! This guy uses computer technology and everything is done precisely!
~Later

Thursday

Dialysis is really going well these days. I remember to keep still for the 15 min. waiting time after the needles are removed. That fourth hour was the most uncomfortable, so the three hours I'm on now is pretty manageable. The worse problem remains to be my back and hip. I'm walking and exercising more now and that helps. The time just gets away from me too quickly. Weeks where EVERY day is filled with dialysis and appts, etc. get rough, but I also need to push myself a little in order to do something other than just sitting at dialysis 3 days a week. Otherwise, I get depressed. I continue to work at decluttering my house but that appears to be a lifetime job! I am happy with the progress thus far, small as it is. Emily always goes out of her way to keep me occupied and challenged. If not for her I'd be in the looney bin by now. Our story is an unusual one that I know was orchestrated by God. I am still awed by it and still try to figure it out, but I can only shake my head, grin and breathe a Thank You.

My diagnosis

Due to the question asked by Jennifer, I thought it would be better to give the information as a post rather than a quick comment. I am not a person of few words. LOL I got my diagnosis 25 years ago. Two or three years earlier my sister had an episode with her potassium out of balance and got really sick. That promoted tests that discovered her PKD. She was told to alert her siblings as it was hereditary. I was tested and told I didn't have it. They did say signs of PKD usually presents itself by your mid-thirties. So I was tested again at 35 by another doctor. He said that if I didn't have it when first tested, I must have a very fast type. He did, however, say he'd like to see the X-rays if they were available. (IVP was used) I took them to him and he stuck them in his viewer. "Oh yes", he immediately said. "You had it then, see right there." And he proceeded to show me what I was looking at and it was very apparent.

Of course, there was nothing to do but wait and watch. I had no outward symptoms for several years, but high blood pressure finally showed itself. I took medication that worked fine for a number of years. Eventually it did lose its effectiveness and it took over a year before a combination was found that worked for me. During that time I had some problems that were caused by the pkd; gout, shingles (in my left palm!), one cyst bleed, things like that. Then the function started to decrease. I guess it was always decreasing but I wasn't told that. This all happened really slowly. When I got to 15-20% function they began to watch the numbers closely. They said when I reached 10% that I would have to go on dialysis.

People always ask me if I began to feel worse. The answer is no. I never could tell by my feelings that my health was any different. So it was kind of easy to ignore the facts until I had to do something. After continued urging by my nephrologist I had an AV fistula done in Sept. of 2006. I didn't go on dialysis until May of 2007, so the fistula was ready. In Dec. of 2006 I started testing at Vanderbilt Hospital for a transplant evaluation. My overall health was good and they said I'm an excellent candidate for a transplant and I'm now on the list. I have no prospects for a live donor so it may be a long wait, if at all.

Well, that's a little more than just the diagnosis so I'll stop here. I'll gladly answer any questions anyone has. Please feel free to ask anything you want to know. BTW, Jennifer, how did you find my site?

~Later

Yes, I've been amiss in my blogging this week. Three days to dialysis, as you know. One day to the orthopedic dr. That place was covered up! They almost acted like they'd never seen me before. They knew it was my second visit, but had no idea of what they had done or told me last time. Basically, I came away with the thought that it just isn't worth the effort. I know most everyone who knows me is having a fit because you think I am going to bypass medical care that I probably need. Not so. Please give me some credit. I've lived with enough of this stuff that I know my body a little better than someone who doesn't know me at all. I just don't need the stress of filling every day with appts. to doctors that is not really going to add any benefit to my life. I just need to manage the pain, and get some rest. That's a little simplified, but I can do it.

Dad and I are a little frustrated. After all the time we put in trying to plan and work toward retirement so we would be okay, and not dependent on anyone, we find ourselves tossed to and fro by the medical and financial community. Nobody seems to know what they're doing. Every one of the people we speak to tells something different. And they can't give out our confidential information even to us. uuuuuuuh......duh! How stupid is that?

William has been taking care of it because he knows all the ins and outs so far to date. If I ever have to take over, it isn't going to be pretty. Right now, I just rely on the fact that Jesus is Lord, and I know that He is in control of whatever happens. This is all temporary. This is not our home. We are just passing through. But I would like for the journey to be as unchaotic as possible.

Monday

Had a really hectic weekend. I was ready for a nap when I got to dialysis this morning, but, of course, that is never really possible. I did find a good movie, "Glory" to watch and I was able to rest somewhat. No bleeding problems or any other problems except some cramping during the last five minutes. So it was a really good day overall. Can't ask for better than that. ~Later