Stayin’ alive

A kidney dialysis/transplant diary

Home for a couple of weeks; hard questions

I’ve been home for two weeks today and things are going fairly well, quite well, according to my visiting nurse. She tells me things are going very well and that I need to be patient with myself.

Tomorrow – 8 in the morning – the physical therapist and the prosthetist (sp?) will be here for the first fitting on the prosthetic. That should help  with balance etc. I’m getting stronger day by day and I really need to because we need to be rid of the commode for one thing.  It takes up too much room, necessary as it is. We also need to be rid of a couple of small tables in the living room and get a TV up on the wall. We need a digital TV anyway.

We’ll also need to have another handicapped bar installed in the bathroom and I need to learn to stand and pivot to use the stool. Thursday, according to my occupational therapist will be a red letter day – a shower and a head wash.

Mom and I have been doing sponge bathes, but it’s difficult to wash your hair with a washrag. Needless to say, I’m looking forward to sudsing my hair, which by the way, seems the worse for wear from all the medicines and probably the shock  to my system. I think I need to get it all cut off and in a buzz just for the ease of care. Not that much shorter than I usually wear it.

Sleep has been somewhat difficult to come by sometimes even with sleeping pills. The night time hours can get fairly long and dark and filled with questions and questioning.

I’m going to try to make it down here to this computer more often. I need to find things to do with my time other than TV, which is so incredibly bad it’s astounding and makes me antsy just to be wasting time watching it. I do have a laptop in a box in the room, but I haven’t found time yet to try to put it together and I may need to call in some help doing so.

I haven’t picked up my knitting yet. It just seems so crowded in the apartment right now and I’m sure a part of it is feeling tied to the apartment. I have to start working on that as well as the physical exercises. Life is more difficult now, there’s no lie to that, but I can only be bound as much as I allow myself to be bound.

I need to repeat that over and over and I need to live it. 

I need to avoid the trap of resentment and start doing gratitudes: I’m alive; life’s not over; there’s still much potential to explore.

Twelve Step programs tell participants to “act as if.” Even if at this time you do not believe in a higher power, act as if you do. I’m gong to try that in my life. I don’t know if I believe in a higher power, but I do have to believe there is some meaning to life and I know I’ll learn much from this journey. What, I may not be sure, but I’m sure there will be much.

I’m facing some hard facts now. I know already that I’ve lost much of my independence and I’m trying to be gracious (boy, that’s certainly not the word I really want) in asking for and accepting help, both physically and emotionally. I am talking with friends about my feelings, not hiding them and I am trying to draw from their strengths.

One friend, when I told her of spending a half hour or more just repeating “thank you” to myself not sure whether I believed in my thank yous to a higher power, said  “they say even a fake smile releases endorphins” so maybe the thank yous carry some sort of “acting as if” weight. Repeat it often enough and make it so. Please.

If you’re out there and you’re struggling, too, please comment. I feel very alone sometimes.

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October 14, 2008 - Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss

5 Comments »

  1. Oh Cathy,

    I am not struggling as you are, but my prayers go out to you.

    I hope that you belong to a church or synagogue. There you will find many helpful hands that expect nothing in return. We do it out of love of God. I don’t know much about lap tops, but if by “putting it together” you mean setting it up with a firewall, anti virus, anti spyware, and getting it ready to to surf the web I’d be more than willing to try to help. I’ve had a desktop computer for over a decade and have learned a lot. Please email me with contact info if that’s what you need.

    Keep your head up and take care,
    John

    Comment by John | October 15, 2008 | Reply

  2. I have been thinking a lot about you and am so sorry that I haven’t stopped by. Things have been so busy at home. Jared’s(my son-in-law)dad has been in the ICU at the University Hospitals for a week now. They amputated his left leg mid-thigh on Monday. He is still unconscious. So I have been going down there alot and sitting with them. I’ll try to call you soon, just know that I haven’t forgotten you! Love you, Chris

    Comment by Chris Doty | October 15, 2008 | Reply

  3. Kathy,

    I am glad to see that you are at least still here. Our bodies sure are something aren’t they? I go to church with Drew Wall (you wrote a bit about him after he lost his leg to cancer). That young man and his family are the most postitive family I have ever met. They act like none of this is a big deal, just another angle. Complete trust in God no matter what. I wish I had that. Too much of a control freak. My 7yr old has a neuro-muscular disease that is slowly progressive. He falls down all the time. He screams and yells and gets mad too. But he always gets up again. He tells me he has too- he can’t get to the cookies first if he is on the floor.
    One good thing- you probably won’t get Alzheimers, since you are having to learn many new things.
    Joke seen recently on the Nesper sign on the way to UIHC:
    Why couldn’t the chicken find her eggs?
    She mislaid them! LOL. Maybe that was funnier in big neon letters on the roadside.
    Keep at it. Make your Mom proud.
    Angela

    Comment by Angela | October 15, 2008 | Reply

  4. John –
    Thank you for the offer of help. I just may call on you. It may have to remain a secondary priority for them time being while I learn the ropes with and begin to cope with my daily life. Things take much more time than they did and though I know each passing day will shave time off these tasks, they consume full days right now.
    Thanks for commenting.

    Christine —
    My god, I don’t know what to say. Your news is shocking and brought tears to my eyes. I wish I could make a difference for you and Jared and your daughter, who was so brimming with hope and expectations just a few short months ago. All of you are in my thoughts. I wish there was more I could do.

    Angela —

    Thanks so much for the smile and inspiration. I hope your little guy keeps pulling himself up to the cookies for years and years.

    Thanks to all of you for the comments. It makes me feel less alone, less like whining and more like keeping up the good fight.

    Comment by iowakitkat | October 16, 2008 | Reply

  5. The steps may not be as big as you’d like, Kathy, and I’m sure you wish they’d come a little faster, but they’re still steps — and forward, not back.

    There are a lot of people here pulling for you. Here’s hoping you can take some comfort from that.

    Stay strong, and keep fightin’ the good fight. As the Kinks sang, “I know tomorrow you’ll find better things.”

    Comment by Richard Pratt | October 17, 2008 | Reply


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