One of the things that ill people do have to deal with is drugs. They can get changed often; but, the more time you spend in your illness the more stable the drugs become. I thought I’d list mine here just to give you an idea:

Epoetin is given via the machine, it has to do with my physical strength and how I feel as is
Iron
Coumadin is to keep my blood thinner so that graphs don’t clot
Aspirin is given to “all“ patients; same reason everyone should take a Bayer a day, helps regulate the heart/blood
Lexapro is the new Prozac, same reason
Lipitor to lower cholesterol
Renagel with most all food, balances the phosophorus and calcium
Reglan, I take this sometime because I have a “diabetic” stomach
Nephrovite is a vitamin designed for all dialysis patients
Zinc . . . ? don’t know what that is for
Kaexelate is a brown, grainey liquid that is taken to reduce the amount of potassium in the body
Valium on hand “if”
and two pain medications

As much as I hate being broke
being broke allows me to get my drugs for little
The medication world is far beyond me
The money .?.?.?.?
Thank God for things that HELP
I haven’t yet experienced the change that Medicare part D will be
that comes in the next week or so
we’ll see . . . .

I have taken many drugs through this process.
When I had the kidney transplant (TX) there were MANY drugs that I came home with: expensive and hard on the body. With the TX drugs my eyes immediately grew cataracts (doctor removed), my gums grew up over my teeth (my dentist took off the grown gums with laser), and I had bouts with deafness plus other things that I’m not remembering at the moment.

Any questions?

Not the way one would think about dying ... It sorta sneaks it’s way into the mind when something else entirely is hanging around. ... I can’t ever get settled with the subject. I think that it is strange to think about how you are going to die. By now, it should be an easy subject. That’s what old age does, or those of us who are chronically ill. I’ll think it all through plenty, then, I’ll let it go and whatever happens happens (can’t change it anyway).

I’ve been through it once (doctor telling me I had minutes to live) and at that time it was just a matter of course. But, now, there is more time between now and then.

I don’t want Leonard to be there before I’m gone (that would be waayyy tooo many tears); nor do I want “friends” that have done little more than leave me alone (I don’t want my last hours to be pissed off ones!!).

I still can not believe it: I have my leg taken off and Sally (who lives here), who had been around with me for the last several years, whom I’ve known for many, many years, and I have barely seen her since I came home from the hospital; I haven’t seen Leonard (from WV) at all; Jeff came before the surgery, came several times while I was in the hospital and then, again, at Thanksgiving; and Linda Kaye, we did dance together as children, hadn’t seen her much through the years while she was having four great girls, and she comes a long and takes me out and about ... which is great/necessary, but, doesn’t feel like a real friendship either ... you know, the kind that you just have loads of whatevers to talk about. And Billy lives in Florida, we can almost always talk all night long.

I miss people dropping in ... like it was in my twenties (please, don’t tell me the difference; I DO get it, I just don’t like it much ... I don’t mind being this age ... I just don’t like not having interesting folks around). AND, I know full well, that if I did drugs (of the recreational type) and alcohol I would STILL be having people drop in and out. I miss that sociability so much, I have OFTEN thought about going back to those recreational habits.

What do people think I’m made of? They think I can do it all ... whatever I need for myself because I always have. Only now, I’m a gazillion times slower, if I get it done at all, it puts EVERYTHING on hold.

The doctor at Duke told me friends most likely wouldn’t be around (81-82). They tend to think that illness will rub off on them. .......DUH ......... They did; and it didn’t!!!

I don’t know why I should expect these years to be so very different ... I’ve always pretty much been on my own ... everybody else is married, parents, grandparents and I didn’t go that route ... never dawned on me that I would still be here in this town where they don’t grow interesting people. Not for me, they haven’t.

Bottom line: I’m an only child, not married, no children of my own, I thought I’d be teaching in college by this age (But, nooooo!!), just on and on a life that I have been on my own. Leonard’s been in my heart for 30 years; but, nobody’s come breaking my door down, either.

I’m way too independent ... but, if that is what I am .....

Where friends are concerned, there are several, good, upclose and personal ones that I have lost ... they have just left me, no comments, no complaints, no discussion, just no longer in my life. Several; like a pattern. It’s another thing that I don’t get. That’s two BIG things that I don’t get about my life and who I am!!!



A nurse friend one time told me I didn’t need to be so strong. Especially as long as I’m on my own, I don’t have any idea how to be anything else. When I am with the right man, then I don’t have to be so strong. But, by my self, I(I) have to get it done. It’s not like I have someone to lean on either litterally or emotionally.

PLEASE ••• STOP ME NOW ••• BEFORE I KEEP ON AND ON ••• GOOD NIGHT

Everything I tried to do was a battle/struggle/didn’t work out. I never have understood that about me in this life ..?
 
Maybe it was the fact that I gave up the battle. I didn’t like the battle or the struggle (professionally). Who does? Unless you are at the top and providing hassle for others, you are lower on the totem pole and are receiving battle and struggle from those ahead of you. ..........DUH

ALL I ever wanted to do was to do my work and learn how to do it better. I function very well as the second to the top. That person is hardly ever worthy of being at the top and would rather go out and about doing something of lesser value to the business he is running. ................DUH I have known of very few who have been in top positions, were truly good at it, really liked what they were doing and who they were doing it for. Some have instinctively known how to play the game and went home at the end of the day and had a good time leaving work at work.

I was serious (there’s that word again —> way too serious for my own good). Responsible ... I would stay at the office for HOURS beyond necessary because I was into working out the design of things. My partner would do it now, while I wanted another five minutes to do it better. It was that way at the TV station, too. The director didn’t care if it needed more work, he wanted it now.

I had studied, had gotten degrees, and everything I tried to do was a battle/struggle/didn’t work out. I kept on dealing with what I could do with my career, the next job, when jobs have been so very thin-pickin’s. When you hear about how to go about getting a job, one of the statements is to treat your job search as if you were working at it eight hours a day. Well, in this town, at that rate, the job search is over within a week (seriously) ... maybe, two weeks if you go and visit all those you already know within your area of search.

Like, if I wanted to work in graphics/design, I already knew the majority of designers. Maybe there would be some new positions in the new companies ..? I was, however, looking for marketing/communications that could easily include my knowledge of graphics/photography/writing and then I’m talking about maybe five to ten positions in this town. There wasn’t anything that I REALLY wanted to do. I was interested in a position or two at Centra Health (our umbrella for the majority of health business in this town).

My doctor was on the board and he said that they asked if I had enough energy ... YES! (and then some) ... BUT, nobody wanted to hire me ... didn’t want me on their insurance ... some people that worked for CH also had had transplants, etc., but they had already been working for the company before the surgery became something they had to face.

All of those examples, and a few more, left me out to dry ... (so to speak) ... and very sad that the things I know how to do well had no place in this town to show themselves. I know very well someone should have hired me. Even ill I do better than the majority.

Nothing came my way to do free lance, either. I did the SCENE Magazine for six years. I got almost nothing wage-wise. I thought I was doing myself a huge justice by doing the magazine while being on dialysis and having had a transplant. The magazine was very professional and we are both still very proud of our work. But, it lead to nothing more for either of us.

I’m thinking about the battle, .... the struggle and that I might have very well not done much of anything to move forward inspite of being an ill person. And I subsequently gave it “up for lent.”

I’m always too tired to really do a good job. I couldn’t work if anyone wanted me to cause when I’m too tired now, I have to go do something else, go lay down, and I also can’t think as well cause my brain is like mush.

E .. enjoy
A .. and
R .. respect
T .. this
H .. home

Get out and enjoy the Earth

. . . 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?