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When did *I* become the wimpy patient? (rant)

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  • When did *I* become the wimpy patient? (rant)

    Just back from seeing the doctor and having some x-rays, will be having an ultrasound in a few weeks. What I can't figure is, why am I scared?

    I thought I was the battle hardened patient. Stick anything you want in me, take anything out. I've been through so much I really thought I was used to anything. But maybe it's been too long since I was in the rotation and lost my skills because I was scared today.

    Doctor doesn't like it that I am peeing blood. She says not to worry but she wants to check some things out.

    I've always felt like the one person in the waiting room who couldn't be surprised by anything and had seen it all. Tryand impress me. Puleeze. I remember all the drugs, tried a ton. Even that lovely Bextra that I didn't like and was taken off the market a few months later because it was killing people. Feldene, Flexeril, amyltryptaline, Neurontin just to start the list. Giant enemas, caths, lotions potions and heck there may have been an incantation or two. Naked in front of groups of interns and every specialist. None of this bothered me. Just used to it. Lifew was life. But am I out of practice because today scared me pretty good.

    She says my bloodwork is excellent but .. she doesn't like the blood in my pee. She has kidney questions and a few others. Why do I care? What could I possibly be afraid of? In the past more than half the time I did wish it was something serious, fuck it. But now it's like I lift my head up more, I notice the sky, the clouds. Am I enjoying life now and not buried in depression that so wonderfully insulated me against anything? It does you know. So do I care now?

    20 years using a chair (not SCI) and it was just this last year that I finally accepted it. It just was suddenly fine. I saw the rest of my life with a chair and it didn't even seem worth a thought. Did that change bring with it something else, like I am no longer buried inside myself and now I do want to live and do everything I've forgotten about for so long? Geez, does this mean that from now on I do care what the doctor says and, what the test means? I kind of liked the not caring but then again ..

    I guess this stuff doesn't get easy. You get what you want and it comes with it's own surprises. I was so mad that I stopped caring about anything, myself most of all. Then I felt better about all of it and suddenly I really do care about what's happening. Geez psyche, make up your mind.

  • #2
    Very great post.
    I think you're in a wonderful place.
    Congratulations-may you operate out of abundance and your life be extraordinary!
    69yo male T12 complete since 1995
    NW NJ

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    • #3
      Damn good post! Thanks, for sharing Grom.
      Good luck and remember everyone here is behind you.
      Rollin' since '89. Complete C8

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      • #4
        I'd be scared too and I've been through a long list of nasty stuff. I don't think it gets easy.
        I have had periodic paralysis all my life. I lost my ability to walk in 2011 beginning with a spinal block, which was used for a hip fracture caused by periodic paralysis.

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        • #5
          Peeing blood sounds like UTI or STONES somewhere either in kidney or bladder, i'm no expert though only have had 6 years in the chair! Good luck i feel the same way most of the time. Hope it is nothing serious.
          T6 Incomplete due to a Spinal cord infarction July 2009

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          • #6
            I have been in the chair now for 36 yrs now. I have seen just about everything that can go wrong. I always think of this Matrix Revolutions quote, and personally it's how i feel.
            "If it's our time to die, it's our time. All I ask is, if we have to give these bastards are lives...WE GIVE 'EM HELL BEFORE WE DO"

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            • #7
              Sorry for not being in touch, things have been busy.

              I'm scared. I don't remember the last time I was this scared. I feel like if it wasn't for my partner .. I can't say here what but I think you can imagine. My deal with God, if you want my ass come and take it and if this turns out to be nothing then I get to feel stupid for being scared but I'll be okay and I can live with that. Next test is this Saturday. I've made friends with pain but I don't have as good a relationship with fear. I guess I need to stare that fucker in the face. I wonder if he's just doing his job. Maybe it's nothing person ;-)

              By the way, I'm sober (no pills) while I write this. That's how freaked out I am - I am acting crazy while I'm sober. My sweetie and I just got back from shopping. Got me lots of feel good food. I'm eating junk until I feel better. She seems to agree this is a good idea, she says taking care of yourself isn't only about nutrition. She's smarter than I am and better looking so I am damn lucky.

              Anyway, sorry for the nonsense and thank you for listening. I'm just fuckin' scared and acting like it.

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              • #8
                So sorry to hear that you're having such a tough time. I'm glad you've got someone in your life who is there with you.

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                • #9
                  Yes, It's so good you have your sweetie to endure this with.
                  This too shall pass-and I believe it will get better.
                  You're sober, you're taking care of yourself, and you're in good company.
                  Good luck and keep us posted.
                  69yo male T12 complete since 1995
                  NW NJ

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                  • #10
                    Hey Grommet, you have friends here who care. Talk it out. You might get an idea worth bouncing around with the medicos.
                    I have had periodic paralysis all my life. I lost my ability to walk in 2011 beginning with a spinal block, which was used for a hip fracture caused by periodic paralysis.

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                    • #11
                      Hey guys. Thank you for the support. Here is my update.

                      On Saturday I had an ultrasound. It was very painful. The technician was terrific, very nice, thorough and professional but he pushed so hard on the device I was squirming. Right in the most painful spots too. That makes sense since those are the areas he wanted to describe. I hadn't bled since that Monday but getting home after the test I bled a lot. A real lot. After a few hours I was clear again.

                      I haven't been bleeding since then and my lower abdominal pain is less each day so I have been putting off making my appointment with my doctor to talk about the results of the x-rays and ultra-sound. Actually I am using denial. I am thinking that if what my partner said about sometimes eating food that's good for you means eating food that isn't healthy but makes you feel better might also apply here. I mean, if not thinking about things makes me feel better in the moment maybe it's the right way to go. If my symptoms were worsening I would call the doctor of course. Also, she did say that I was to make an appointment after the test but that if either test showed anything urgent they would contact me immediately. So I am thinking I will put this off a little while. I was scared to death at the test which is confusing to me since I've been trough so many exams and procedures in the last 25 years. I don't know what change has come over me but suddenly exam rooms are freaking me out.

                      Something I did not tell my partner was that there have been a few times in the last weeks when I decided to wait and whatever happened, happened. I made that choice once about 15 years ago when I was bleeding. I couldn't take another hospital visit at the time so I left a simple note at home and went out for the day.

                      Our bodies are our choices. Having loved ones changes a lot and I feel that but in the end it is up to me if I want to get stuck or probed or cut. Sometimes I might make the choice that I want to stay away from doctors for a while and wait it out. A friend of mine frequently reminds his doctor not to tell him about certain test results. It could kill my friend if he doesn't get the info but he made the decision years ago that he would rather not know, just live his life. He has been lucky and nothing has happened yet and maybe never will but I wonder if for anyone living with a disability if at some point you decide there is what you will and won't do. I don't judge anyone for going either way - fighting and doing anything that might help or choosing the opposite and going gently along even if it means, into the night.

                      I think this qualifies as another rant, let me know if anyone gets tired of hearing them. :-)

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                      • #12
                        Originally posted by grommet View Post

                        I think this qualifies as another rant, let me know if anyone gets tired of hearing them. :-)
                        I didn't hear anything remotely resembling a rant. Sounds all very sober and reflective to me. Hope you feel better soon.
                        stephen@bike-on.com

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                        • #13
                          Doesn't sound like a rant to me, either. We have to make decisions based on a number of things that our partners might not fully appreciate. It can be such a tough call.
                          MS with cervical and thoracic cord lesions

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                          • #14
                            Echoing what Stephen and Bonnette said - not a rant, very reflective. Sorry that you are having to go through this.

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                            • #15
                              Update

                              Just off the phone with the doctor. Kidney stone on the left, complicated cyst in the right kidney. My appointment with the nephrologist is in 2 weeks. Doctor says they will probably need to do a CT. She doesn't know why I am having the severe lower abdominal pain and so is referring me to a Urologist, they will let me know when the appointment is made.

                              Yesterday the abdominal pain grew all day until is was horrible by nighttime but after laying in bed for a while it got much better.

                              My doctor is terrible at explaining things. She didn't tell me what a cyst was or why they needed to monitor it. She just kept saying they needed to. I asked why. What does it mean to have this cyst. She only repeated herself. Very frustrating. Also, with the pain, will it be okay for several weeks or am I going to have a middle-of-the-night scream and run to the ER? Answers mean a lot, not having them leaves everything open.

                              I do not know what is going on. And my partner and I are fighting so she doesn't want to hear from me. I think I am having Thanksgiving alone with kidney problems and wondering what this is all going to mean in the end. These could be a rough few months or, something more simple. I don't know. The doctor did say something about a camera being placed inside me and said it was simple. I wonder if she could lay on the table next to me and have the same procedure done while I have mine and she could describe how simple it is for her.

                              I know I don't want to be in pain. I know I miss my girlfriend. Everything else I am not sure about. Silly extreme thought but one that is growing in me, am I a walking time-bomb, I mean past the hyperbole of that, is something awful coming my way? I don't care about fair, that's a rookie thing. I'm no rookie. I just don't know what is really going to happen to me and if I have what it takes to go through it all. Thank god I am not bored. I remember being a kid, hanging out with all my friends and we all thought we might die of boredom on some summer day. Being grown up and sick, it isn't boring. This is going to be an interesting day. I guess for a while, everything is going to feel interesting. I think I need to cover myself in dollar bills and walk around a bad part of town.

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