. . . loose control of their lives.

I had been on dialysis for quite a few years, had been through a transplant, and I was in the hospital for something else. I seemed to be quite upset, crying off and on, when one of the doctors from the dialysis clinic came in.

The gentle man that he is, realized that I was bothered far beyond what I usually am [which is never; I’m usually bothered on the “come here, let me talk with you a minute” level ... which is also a way of being able to tease with my doctors (translates as laughter which is hugely important)].

He sat there, talked with me and let me get it out for more than an hour (he had other patients and this was morning rounds). The thing he really had to say to me was about how we (dialysis patients) loose control over our lives. We can no longer sleep well; our diet is no longer our choice; we MUST be at dialysis three days a week for four hours on the machine at a time; chances are that we can no longer work; we, generally, are too tired to do anything of action—real action (exercise); we are often too tired to be social. All these things and maybe more are what we face ... not all at once, but, after a while we realize just what has changed.

On top of that, friends don’t think so. I had friends, that I had had for years, that thought I just wasn’t doing as much as I could do. They didn’t say that, but, that’s what they thought.

The only thing I ever did need to control, was MY life. I never needed to control anyone else's; and I never needed any one else to control mine.

Segue into the future a few years —> TODAY! Today I’m paying attention to those things that I have no control over.

The trash (of all things!!) ... I can’t get the trash out to be picked up ... the curb is too high and the wheelchair won’t go up, over it ... there are too many bags sitting around in the house in unobscured locations ... there are a couple of people who often get here on Thursday afternoons and that is one thing that gets done. That hasn’t happened for a while! Nobody’s fault.

The floors need to be swept ... I can do the sweeping, but, I can’t lean over well with the dust pan to do the sweeping up ... too much pressure on my heart/breathing/etc..

I have been in the process of “getting things out of my house” ... those things that I no longer need and that no longer speak to me. I do have a household, as apposed to a cigar box, I thought that my life was going to be significantly different than it is (I have art things, I have things for two, I have collections of things that I now have given many of them away), and I am keeping those things that do talk to my heart and soul. Situation is that I am an only child, both parents died in 1990 [I was born to older parents; they were 40 when I was born (1949)], and I am trying to get things out so I can make it easier for friends to take care of the household when I’m gone.

I also don’t expect me to go to a medical center of any sort ... I truly don’t need to live on and on (she said with questions in her thinking) ... I think the truth of that matter will show itself as is needed.

AND, I am trying to get the house to look decent while I am still here!!! The kitchen leaves much to be desired ... hasn’t been cleaned in wwaaayyy tooo long. I found it hard, especially on my back, to stand up putting my stump in the chair and trying to wash the dishes. So, I try to wash a dish here and there ... it’s slow, but I can see the difference!!! Even if I am the only one!!!

The studio and the bedroom aren’t bad — just general cleaning is needed! And this room the computer is in — it’s the collect all ... so, it needs a bit of extra elbow grease.

All this won’t take much, just more than I can do in a few days. If someone would come along, hang out and kinda get things done with me, we could get enough done in an afternoon. But, do they ............ nooooooo!!! They all think I’m handling life as I used to ....... DUH.........Oh Well!!!

(No sympathy required. Just the effort to understand.)

I do get my laundry done. I have always liked doing the laundry. It, too, I have to do in three minute segments. But, like I said, I have always liked doing the laundry. And I have no such empathy for the dishes!!!

I have to wait. No matter what I need to get done, I have to wait for somebody to come along. I no longer can drive [too much money to get a vehicle with the appropriate equipment; and the bus is generally just fine ... but, when I am ready to go out and about (say: 11pm), they’re not!!!]

And, of course, the lack of money stands out like a sore thumb. But, such as it is.

People think you are the same as you were, only in a chair. I know this because I didn’t used to understand the differences that being ill, being in a chair, etc., really DO make in a person’s life.

When a person is in a chair, people looking on have NO IDEA what is wrong OR what that person can or can not do. Me: I’m in good shape, I look very well and I think I can do anything (mostly, I can). Just watch me get up and walk. I think I can do that. Then my reality shows up!!! :))) But, that is really ok. I do fine. H, there’s nothing to do in this town but shop anyway!!!

This blog has made a world of difference to me. Actually, THAT’S why my kitchen is still the mess that it’s in. (I recognize an excuse when I see one!!) I roll through it on the way to the frig and juice. Then, I smell this or that on my way back to the computer and say to myself “I gotta get back in there”. .......DUH

In general, I thought there would be more people in and out of this house. I thought that when I began to feel better, people would start being around. You know, some level of partying like it was 1970something. THAT has not happened. And, THAT is something that I miss. I don’t think 50somethings do that any more; maybe a sparce soul here and there.

My life used to be like that, through my twenties and until I went to the hospital with my first illness. Literally, I had gotten ready for a party when that night I called my doctor, I went to the ER and I have been “ill” ever since. Once you are ill, you will always be an ill person in some way or the other.

I’m sorry this is so long . . . it kinda just kept on rolling.

Remember:
IT IS ALL IN THE ATTITUDE
and YOU MUST LAUGH—A LOT

again, Happy Easter
enjoy the day for what it was meant to be
(well, now that the day is almost over!!!)

Any questions?

. . . it’s Easter

Think About Jesus

Last year when I had my R leg taken off I was in the hospital from 10/04-2/05 in one hospital while a friend of mine from dialysis was in another hospital. She had decided to call it over. She had lived in pain for far too long for her.

I wish I had realized then how important it was going to be to me to be there. I could have made arrangements to go there for a visit from one hospital to another if I’d just thought about it. I’ve heard a few stories ... friends around, talking, laughing, drinking martinis.

I wish I had been there ... how long did it take.? ...how did she feel about it.? ...what things happened.? ... things I need to know.

Norma came into Bay C about May 2000. She, suddenly, was having to deal with being on dialysis. (She never could adjust; she stayed in denial.) Before long we were visiting, commenting here and there, she had worked for our school system and I had taught school (strike one for the home team!!).

She and a friend of hers invited me to go to Roanoke for dinner. We had a good time, drove around a bit and came home. We went to their home for a while and talking, laughing, talking, laughing, and all of a sudden I was hearing names I knew. Names that I had heard from my mother’s stories of her teaching days. My mother had taught Norma and Betty. Betty’s comment was, “Was she as strict on you as she was when she was teaching school.?” “Yep, that would be my guess!”

I still miss not having that time with Norma, not being able to learn from her how she died. That is an important lesson usually learned from our parents. But, my circumstance is different. I dealt with both my parents dying ... but, they died a normal death, nothing extraordinary.

Any questions?

At some time I’m going to start talking about death. Those of us who are chronically ill most likely have been thinking about it for quite some time.

Me? For at lease five years; if not more. It is ok ... at least, by me, it is. I have often wondered what somebody in their elderly years thinks about when it comes to that subject.

An elderly woman, say 92, in decent health, looks good ... what does she think of when it comes to death? ... how long has she had her death on her mind? I met a man that was 92 and didn’t look a day over 60. There are so many various ways that a person “of age” can look, appear, think about themselves, think about others of a certain age. Just because one is a hundred and three doesn’t mean they have spent any time concerning themselves about death. Until somebody on the News comes a long, and asks!!! DUH

Well, I’m 57 and the way my body has gone through h*#l in the last twenty years doesn’t necessarily mean that I’m calling it short. BUT, afterall, my body has been going through h#*l now for the last 24 years, my doc answered my question in ‘95 with I probably had about 10 years to live. I figured other than God, he might very well have a better idea than most anybody else.

On top of which, he is not God and does not claim to be. And, I can just as well keep on living. I doubt I’ll remind him of it at ten years and one day ... or eleven years ... I might remind him of it at 20 years —> it would make a good joke, don’t you think.

I have surprised doctors before ... and I am still here. F*^k ’em if they can’t take a joke!!

The thing that is going to help me by writing about death here is that none of my friends want to hear anything about this subject.

OK. I guess I’m writing about it now!!!

I’ve been cleaning out my house for at lease three years. Maybe longer. (Basically, no big deal.) I’m getting things out of the house that don’t speak to me and keeping things that do. I’ve had a number of art items that in the last few years I’ve given them to people I know and like. One friend is NEVER going to be able to forget about me. Her house is filled!!!!

Otherwise, I’m taking photographs and making notes about where things should go ... to whom!! It is a very good idea and quite straight forward. I am an only child and right now I have no idea who would be able to stand up to the job of cleaning out my house. Two of my longest time friends live in MD and WV and they work. They don’t want to cover the subject either!!

I can’t imagine that any friends would have any trouble with any of the other friends. (I don’t have that many!!) They may not have met each other, but, they have heard each other’s name for years and years.

To me, it is important to handle your business. I had my first Will at 25. And, I’m STILL in the throws of having to make another one ASAP. I have had a Living Will since I was first ill. My doctor has a copy as does the hospital. DO NOT BE AFRAID of the things you must do. They will only turn around and bite you in the ass if, indeed, you are not ready. (Well, in this case, you may not know you are being bit!)

Cover your business ahead of time. Don’t wait until you can’t think appropriately. Get it done while you are of sound body and mind. Give the important members of your family a copy of your Will, Living Will, and your wishes about your organs being used, signatured, wittnessed, and dated in ink. You have no idea what might happen tomorrow.

As for me: One Friday I stayed home from work to get my house ready for a party of epic proportions. By 1am I didn’t feel right and I called my doc. He said he’d meet me in the morning. I went to the ER at 3am and passed out an hour or so later. I recognized the truth of the matter several times over the next three days and they sent me to Duke Hospital ... acute hemorrhagic pancreatitis. It not only sounds rough, it was rough. That was the end of September 81 and I came home to stay the end of January 82.

I do believe in God.
I have never been afraid about anything medical.
There isn’t anything I can do about it.
The best thing I can do is go with the flow.
It is ALL IN THE ATTITUDE.

Any questions?

When on dialysis, all patients need to pay attention to how much fluid they drink daily. Why, you ask? Because, patients on dialysis don’t urinate and therefore fluids cause you to gain weight rapidly and that is hard on your heart. Continually having too much fluid can wear out your heart and cause an “early” death.

Early is in quotes because once you are on dialysis, death can come at most any time. You have a chronic illness ... end stage renal disease ... referred to as ESRD.

Fluid is everything that is liquid at room temperature ... ice cream, jello ... I can’t think of anything else at the moment. But, they’re out there!

Any questions?

OK ... drugs! Not the recreational kind of ester year but the kind that slowly, but, surely, wear your body down. Don’t get me wrong ... all these drugs do help keep you handling your illness. But, eventually you realize that some counter each other and cause other problems (this is not new to the doctor ... he just waits until it happens to explain it to you ... no need to tell you before hand!!). GEEZE, if he told you about all this at the beginning, you’d choose NOW, WHY WAIT!!?

Let’s see ... my drugs: Nephrovite, a vitamin designed for dialysis patients and I think all patients take this one. Of course, I am sure all patients don’t take all the same drugs and I only know which drugs I take; Lipator, for cholesterol; Lexapro, for keeping your mind/emotions in better control (it is hard being a patient, there are MANY things you have to deal with nonetheless that now your life is nothing like you thought it would be; Zinc Sulfate, for I don’t know why; Bayer, same reason every adult needs to take one ... helps your heart function better for longer; Neurotin, it helps with the pain; Percocet, also helps with the pain (!); Cumadin, a blood thinner; Lantis, insulin; Keyoxolate, for keeping the Potassium lower; Renagel, helps keep the phosphorus lower. There are several others that are used when particular things happen.

Then, the transplant drugs were heavy and hard on the body/also expensive!!

Any questions?

And then there’s FOOD/DIET ... and you wouldn’t believe. Frankly, I’ve been doing this for so long that I doubt I can actually tell you much information. ??? I am on dialysis and that’s one diet, heart problems and that’s another diet, diabetic and that’s another diet. So, very early on I decided that I’d eat what I really wanted to eat just in MODERATION. As that thought helped me through the years, now, I am fairly good at eating the right things. Except for sweets. And, I love my pastries. tisktisk

Any questions?

All-n-all, all these things ad up and if you don’t pay attention and do things right, you very well pay for it. All these things keep you in better shape for longer.

AND ... IT’S ALL IN THE ATTITUDE

Any questions?