I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: gkcoley on December 30, 2012, 04:37:17 PM
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I've been on dialysis since i was 8 and now at age 25 i am having a really hard tiem with it. My job pays so little i still have to live at home. I'm in a wheelchair from prolonged high phosphorus when i was little etc. Living on my own and being for the most part 'normal' seems pretty much impossible. All my old friends are getting married and starting lives and im still just like this so i have no 'peers' to relate to. I dont know, it's made me angry and cynical. I was thinking maybe therapy would help, but i think that is very expensive.
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I think u being on dialysis for so long just saids what kind of person u are. Someone with strong character .
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Angry and cynical sounds like a familiar tune to me. It's on repeat in my head some days.
My grumpy thought for the holidays....studies on the difference between professionals and amateurs at various things like music, painting, dancing, etc., all come down to time to spent practicing. If you want to be an expert at something, the dividing line is at about 10,000 hours of practice. That's about a year and a half of 24/7 practice if you do the math. Huh, so let's think - what am I an expert on....
Being chronically ill - going on 30 years of that.
Projectile vomiting - gotta be getting close to 10,000 hours of that, too. It was pretty much a daily occurrance for about 3 years before I figured out it was gastroparesis and demanded some treatment for it.
Being chronically broke. See the first reason for an easy explanation.
Chronic fatigue - a decade of severe anemia gives expert-level lessons on how to get things done in 10 minute increments between breaks to gasp for air.
Being constantly in pain. Yup, got that covered several times over. Between the nerve damage and the scar tissue from multiple surgeries, that's been a constant companion for much longer than that.
And the worst one?
Being alone. My ex split right before I had to start D in 2006. We may not have divorced or even been able to stop living in the same house then, but being present and being company are two very different things.
I'm guessing you've got a list of things you now qualify as an expert at, too.
The cost of therapy depends on your insurance coverage mostly. How about the social worker at your center? (Some of them are useless, so take that suggestion for what yours is worth.) There might be local support groups that you could join, too. Maybe not strictly D patients, but any place that helps people with disabilities and chronic illnesses might be a help. Church groups are an option if you are a believer.
Mostly, I rely on IHD and the friends I've made volunteering with a local cancer support group. (I teach craft classes and bake a lot of fattening goodies for the group meals.) I haven't had cancer, but it really is helpful to be around people who don't gasp "Oh you poor thing!" when I talk about my health issues and my transplant complications. We compare horror stories about the worst doctors we've ever had, and debate which pain meds give us the worst hallucinations. It's lovely to get jokes and sarcasm back instead of pity.
Being an expert at gallows humor and sarcasm is the only thing that gets me through.
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Angry and cynical sounds like a familiar tune to me. It's on repeat in my head some days.
My grumpy thought for the holidays....studies on the difference between professionals and amateurs at various things like music, painting, dancing, etc., all come down to time to spent practicing. If you want to be an expert at something, the dividing line is at about 10,000 hours of practice. That's about a year and a half of 24/7 practice if you do the math. Huh, so let's think - what am I an expert on....
Being chronically ill - going on 30 years of that.
Projectile vomiting - gotta be getting close to 10,000 hours of that, too. It was pretty much a daily occurrance for about 3 years before I figured out it was gastroparesis and demanded some treatment for it.
Being chronically broke. See the first reason for an easy explanation.
Chronic fatigue - a decade of severe anemia gives expert-level lessons on how to get things done in 10 minute increments between breaks to gasp for air.
Being constantly in pain. Yup, got that covered several times over. Between the nerve damage and the scar tissue from multiple surgeries, that's been a constant companion for much longer than that.
And the worst one?
Being alone. My ex split right before I had to start D in 2006. We may not have divorced or even been able to stop living in the same house then, but being present and being company are two very different things.
I'm guessing you've got a list of things you now qualify as an expert at, too.
The cost of therapy depends on your insurance coverage mostly. How about the social worker at your center? (Some of them are useless, so take that suggestion for what yours is worth.) There might be local support groups that you could join, too. Maybe not strictly D patients, but any place that helps people with disabilities and chronic illnesses might be a help. Church groups are an option if you are a believer.
Mostly, I rely on IHD and the friends I've made volunteering with a local cancer support group. (I teach craft classes and bake a lot of fattening goodies for the group meals.) I haven't had cancer, but it really is helpful to be around people who don't gasp "Oh you poor thing!" when I talk about my health issues and my transplant complications. We compare horror stories about the worst doctors we've ever had, and debate which pain meds give us the worst hallucinations. It's lovely to get jokes and sarcasm back instead of pity.
Being an expert at gallows humor and sarcasm is the only thing that gets me through.
Yeah, i work from home and that isng consistent. i way have so much work i cant keep up one week and then oen week have no work. I only leave the house for dialysis and doc appointments. I get little to no social interaction except with my parents. So i think it would be fun to do social groups or somehthing but i lvie in a small po dunk Texas town so those dont much exist
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There are some therapists who charge on a sliding scale based on your income. You could make some phone calls. Unfortunately, even if there are groups meeting the only way to find out about them is through a therapist.
Don't be too hard on yourself for feeling down. This disease sucks big time.
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I live in a little podunk town (actually a Village! Let the jokes begin! :rofl; ) in IL! When I first started D, I was desperate to find somekind of support group. I was told there was nothing because no one wanted one?! I am so thankful to have found IHD. Hopefully, your SW can help you. Mine is so-so. Sometimes she knows what she's talking about but more often than not, she's clueless!
Best of luck to you! :cuddle; :grouphug;
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I live in a little podunk town (actually a Village! Let the jokes begin! :rofl; ) in IL!
Nope, no joking allowed. I grew up in a village, too. It wanted to be a city but it was too small, so the town council changed its name - so it was officially "The Village of Mackinaw City." How pathetic is that?
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Nope, no joking allowed. I grew up in a village, too. It wanted to be a city but it was too small, so the town council changed its name - so it was officially "The Village of Mackinaw City." How pathetic is that?
:rofl; :rofl; :rofl;
That's a good one! The little village that could...! :clap;
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I, too, live in a little village! :D :grouphug; to all my village people!! Wait... Uhm.. :rofl;
Anyway, I don't know if you'd feel up to it, but why don't you try volunteering at your local hospital, if possible? Before I worked as a Phlebotomist, I volunteered in the Radiology department at the hospital and I can tell you it can be a breath of fresh air. You can see and talk to people who you can relate to, who may even be worse off than you and it can really put things into perspective. In my daily work, I have to go to the ER and cancer units a lot, and I'm always talking with the patients. In the time it takes me to draw their blood, put it in the tubes, etc. we can have a brief conversation about our lives. Compare and contrast, if you will. I think it gives them hope for themselves, and it gives me a look into what else people can live through amd accomplish living with a chronic illness.
That's just my two cents. :) I hope you find what you need gkcoley. And in the meantime, we are always to try and help lift your spirits. Take care!
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I, too, live in a little village! :D :grouphug; to all my village people!! Wait... Uhm.. :rofl;
Anyway, I don't know if you'd feel up to it, but why don't you try volunteering at your local hospital, if possible? Before I worked as a Phlebotomist, I volunteered in the Radiology department at the hospital and I can tell you it can be a breath of fresh air. You can see and talk to people who you can relate to, who may even be worse off than you and it can really put things into perspective. In my daily work, I have to go to the ER and cancer units a lot, and I'm always talking with the patients. In the time it takes me to draw their blood, put it in the tubes, etc. we can have a brief conversation about our lives. Compare and contrast, if you will. I think it gives them hope for themselves, and it gives me a look into what else people can live through amd accomplish living with a chronic illness.
That's just my two cents. :) I hope you find what you need gkcoley. And in the meantime, we are always to try and help lift your spirits. Take care!
Yeah, making others feel better always makes me feel good. I think my main issue is feeling 'trapped' at home at 25 and it frustrates me. Like everybody i have good days and bad. Ive actually had 2-3 good days in a row as of today! lol
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Hey, that's great! :cheer: Celebrate the good days instead of dwelling on the bad days, right? I have found that a lot of how I feel has to do with my attitude that day. I know it's hard to be upbeat and cheery when you've just come off dialysis and you feel like complete crap and just want to sleep all day. But life is too short (especially for us!) to be grumpy all the time! lol I'm really glad I joined this site; it's nice to be able to talk with people who know exactly what you're going through, not just imagining or have pity for you. And people are so informative here! Knowledge is key in any disease.
Anyway, excuse my rambling.... :rofl; I can get on a roll sometimes. haha
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I keep track of my good days and bad days (just a mark against the day when I record my weight) because I thought I was feeling crappy a lot of the time. It turned out I WAS feeling revolting about three days a month, but there were also 12+ days of absolutely fantastic, 7+ days of really good, and about 7 days of ho-hum.