Post-Traumatic Stress Disorder (PTSD) Support Group
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FF (Feeling Fragile)
I'm finally just welling up with tears about this continuing kidney disease from the damage done to my kidneys by being in a clinical trial for high doses of Seroquel for PTSD back in 2010. My startle response had been so high that in 2006 I inadvertently had punched a guy who walked up behind me in my home, a friend I didn't mean to hurt. I'd never done that before, so I felt so guilty I went on the Seroquel trial that did me permanent damage.
The high Seroquel dosages made it hard to notice the onset of diabetes and blood sugar highs and lows were dismissed by my doc as med side effects. It was a year before I collapsed, was taken to a different hospital, and diagnosed with kidney failure and diabetes by a different doctor. The 60% kidney failure took away my hospital chaplaincy career. I got the community college job teaching nurses I've had for the last 4 years. I learned to be grateful for the job. I adjusted.
For the job, I had to move from a big city I love to a small Rust Belt city 1500 miles away that has seen a lot of hardship, having lost half of its population in the crash of the steel industry. I lowered my expectations and live in a run down neighborhood. At least it's cheap, I told myself. I adjusted.
Kidney disease brought on weight gain for me, so I turned into Santa Claus. My fiancee broke up with me when I got kidney disease, so I haven't been on a date since 2010. I told myself I'd had a lot of great relationships, and that by being alone so much at least there was less chance I would hit anybody again in a startle response. I adjusted.
Last Fall, it got really hard to work. I didn't miss any sick days, but I found myself dragging. I found out I had a kidney infection and was given antibiotics. They make my neuropathy from kidney disease hurt more. I adjusted.
My kidney disease led to back problems and I had to use a cane. I did physical therapy at the hospital and got off the cane. My insurance didn't cover all of it. I cost me $750 out of pocket by January 2015. I adjusted.
I got to dragging around again at work by March of this year. Found out a week ago it was another kidney infection. I got the antibiotics and my neuropathy hurt again my feet as a side effect. I adjusted.
Yesterday the doctor told me my kidney infection was over, but that there was blood in my urine and I might have kidney stones now. I have to adjust.
Today all alone in my apartment in this poor town facing the end of Spring Break from my little community college job, a Break during which I've been sick the whole time, tears came to my eyes. I'll adjust again. I have to. But I'm tired of adjusting to kidney this, kidney that.
I remember how it is all because I took high doses of Seroquel to medicate my PTSD startle response after accidentally hitting someone. I take hitting someone that seriously, even if by accident. I really cost me my life, and I still keep having to pay more and more for it.
I don't like to feel sorry for myself. For me, I find it's dangerous. I couldn't help but have my eyes tear up today before sucking it up to adjust again.
Thanks for listening. These kidneys are going to make life long demands I have to adjust to, I am finding out. I had to get it out there so I could go on today. Somebody remind me of how many things others here have adjusted to, ok? And that I can do it again and again as needed?
I'm finally just welling up with tears about this continuing kidney disease from the damage done to my kidneys by being in a clinical trial for high doses of Seroquel for PTSD back in 2010. My startle response had been so high that in 2006 I inadvertently had punched a guy who walked up behind me in my home, a friend I didn't mean to hurt. I'd never done that before, so I felt so guilty I went on the Seroquel trial that did me permanent damage.
The high Seroquel dosages made it hard to notice the onset of diabetes and blood sugar highs and lows were dismissed by my doc as med side effects. It was a year before I collapsed, was taken to a different hospital, and diagnosed with kidney failure and diabetes by a different doctor. The 60% kidney failure took away my hospital chaplaincy career. I got the community college job teaching nurses I've had for the last 4 years. I learned to be grateful for the job. I adjusted.
For the job, I had to move from a big city I love to a small Rust Belt city 1500 miles away that has seen a lot of hardship, having lost half of its population in the crash of the steel industry. I lowered my expectations and live in a run down neighborhood. At least it's cheap, I told myself. I adjusted.
Kidney disease brought on weight gain for me, so I turned into Santa Claus. My fiancee broke up with me when I got kidney disease, so I haven't been on a date since 2010. I told myself I'd had a lot of great relationships, and that by being alone so much at least there was less chance I would hit anybody again in a startle response. I adjusted.
Last Fall, it got really hard to work. I didn't miss any sick days, but I found myself dragging. I found out I had a kidney infection and was given antibiotics. They make my neuropathy from kidney disease hurt more. I adjusted.
My kidney disease led to back problems and I had to use a cane. I did physical therapy at the hospital and got off the cane. My insurance didn't cover all of it. I cost me $750 out of pocket by January 2015. I adjusted.
I got to dragging around again at work by March of this year. Found out a week ago it was another kidney infection. I got the antibiotics and my neuropathy hurt again my feet as a side effect. I adjusted.
Yesterday the doctor told me my kidney infection was over, but that there was blood in my urine and I might have kidney stones now. I have to adjust.
Today all alone in my apartment in this poor town facing the end of Spring Break from my little community college job, a Break during which I've been sick the whole time, tears came to my eyes. I'll adjust again. I have to. But I'm tired of adjusting to kidney this, kidney that.
I remember how it is all because I took high doses of Seroquel to medicate my PTSD startle response after accidentally hitting someone. I take hitting someone that seriously, even if by accident. I really cost me my life, and I still keep having to pay more and more for it.
I don't like to feel sorry for myself. For me, I find it's dangerous. I couldn't help but have my eyes tear up today before sucking it up to adjust again.
Thanks for listening. These kidneys are going to make life long demands I have to adjust to, I am finding out. I had to get it out there so I could go on today. Somebody remind me of how many things others here have adjusted to, ok? And that I can do it again and again as needed?
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Just wanted to give a thank you to Mid, Arfie, Malibumark, Greeneyes, Mlro, Girlincalif, and Suncloudjd! You all always have such helpful tips and advice, but I always forget to write on my posts when I see you post, lol. I would lose my head if it wasn't attached to my body, lol. Thank you all so much! I'm starting to use my AI app as a sounding board again. I used to use it as that before...
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Hey all, i know its been quite awhile since i posted on here. Its been a summer all right. Its been something else........... You know how they say not to open the can of worms? Well a few months ago i decided to find out what my due date would have been for my first baby, the one conceived by r***. My baby would have been due on March 4th of 2006. They would be 20 years old. I was R**** on June...
My sister died. Adjustment ongoing.
The effect of pregnancy hormones on my epilepsy meant I couldn't have children. Adjustment made (unmade remade etc. over the years).
My dad died. Adjustment made. (I feel guilty on that one.)
Then the meds meant losing my driver's license. Adjustment made.
Diagnosed with fibromyalgia and meds were sketchy so I just sorta plowed on doing my best, and went from athletic to sorta-athletic. Adjustment? Check.
Then the epilepsy meds stopped working and I almost died and lost a year of my lie while meds were tested. Adjustment eventually made.
New town, new job, new life. Adjustment to higher cost of living, different kind of environment (I went from Rust Belt to non-Rust Belt, Muji).
Found out I had ovarian cysts and endometriosis. Much added pain, oh rapture. Led to a painkiller reaction that led to my fall that led to damage ot my spine and pelvis in 2011.
Adjustment ongoing, but I walk without a cane 90 percent of the time, and that I walk at all is occasionally more miraculous than words can express....
Except the meds that'd help with pain are not good for my epilepsy. Life with pain. OK, adjustment ongoing.
PTSD breaks loose. Many psych meds don't like epilepsy or epilepsy meds. I'm on some, but they're not the most effective by far. Just what I can get. So, okay. Adjustment made/ongoing.
What happens next? Dang if I know. But I haven't stopped adapting yet, so I figure it's gotten to be a habit. I need a good whinge and cry every week or so, but that's just part of the coping.
Gentle hugs, Muji. You've done so much already, this is one of those rocks in your shoe that hurts bigger than the rock really is, if that makes sense. (?) That always sounded better when my mom said it....
PUrrs of rest and comfort to you,
Leo
I also detect some erroneous thinking ... when you say that you are paying for having hit someone. I hear self-blame and guilt in that. But you know that your startle response was an unasked for and unwanted side effect of the many traumas you endured. Do you deserve to be punished for it? Hell no you don't. So go ahead and get angry - angry at those who traumatized you, and at the doctors who experimented on you, quite carelessly from the sound of it. I'm not suggesting you wallow in your anger or grief, but you have a right to give vent to them and release those feelings which are both human and inevitable under the circumstances.
I know you will find a way to adjust to this, but I hope that you will not feel that you have to be a martyr and accept whatever comes your way without anger and without protest. Please give yourself the courtesy of allowing your human and justified response to this unjust situation.
That myth of "stop feeling sorry for yourself" ...Its perfectly fine to feel overwhelmed with life probs recognize it and and like you said adjust again...
Its good that you do not repress how you feel. Its healthy.
Thanks for reminding me of good old Pete Walker's website. I've known about it and shared it here for years. It's not for everybody, I've found, but it really helps me. I went back to it after your reminder here and found what you were saying in these words of his:
"Self-pity in balanced moderation is the miraculously releasing gift of "self-sorrowing". Self-sorrowing is one of the most beautiful and restorative of emotional experiences. There is nothing in the world more centering than a good unabashed cry about one's troubles.
http://www.pete-walker.com/recoverySelfpity.htm
Thank you! I have the same kidney trouble, but I feel much better about myself now. Much appreciated.
I was diagnosed in 2004 with depression and placed on prozac, six months later a manic episode. That was a huge adjustment. The medication adjustments were horrible, I remember the first time I took the medications I was sitting on my floor with my ex husband when I started to get dizzy. I slumped over and slid down to the floor and fell asleep. New medications were a huge adjustment and turned me into another person. I became lifeless. In 2010 my ex husband and I separated. I had not been on my own since I was 22 nos facing a lot of challenges, having to adjust to a new life alone and being bipolar.
I was prescribed another name brand medication that did make me obese and prediabetic. I now have chronic urinary retention from that one. I had to adjust my diet completely.
I have also had many surgeries because of my GR&S and after each one meant adjustment for my entire bodily functions.
I knew I had rape trauma but I never thought I had PTSD. My favorite pdoc had told me I have PTSD from not only my GR&S but family trauma as well. I am now using and still learning new coping skills.
I think when we stop adjusting we have given up. I am happy you got this out, although sad you are having to go through all of this. Huge hugs (sorry if my writing is terrible, having a hard time concentrating. )
I love the Pete Walker quote, that's awesome!
Self-sorrowing is such a great way to put it.
I also had a medication bring on obesity, which I battle right now. Fortunately, there has been some success in that area this month as I met with a hospital nutritionist and got some help. I've lost 3 pounds since then. Sorry yours left you with urinary problems. Mine are of the other kind--frequent, not retention. If it's not one thing it's the other, huh?
Sorry your marriage ended in the mix of all of this. So did my engagement to be married. I tell myself I may have dodged a bullet there, though, as a consolation.
Yeah, I try to take the long view of evolution: we evolve or go extinct, right? So we must adjust. Sometimes I do that with gusto, and sometimes not so much.
Leo, isn't that a good quote? I read the whole article from which it is quoted. Very good So good that I bought 2 of the books Walker recommends on his website. Not his, but one on journalling wellness and another on the self sorrowing concept.
I am so sorry for your pain, muji. It is well worthy of tears. The sooner begun, the sooner done.
((((((((((((((muji)))))))))))))))))
About keeping going, as your Churchill quote said.
It says: "There might be some one in this crowd/Who's right down in it right now/Who's deep in the depths/Of the dark of hardship
Someone who'll make it somehow" Which I needed to hear.
So I got to tell him in person how we liked his song, how we're in a support group here, and it speaks to us. Got his autograph on a CD, too, and got a photo taken of the two of us. Then I got home and sweated a fever again. But what a nice end to a bad week.
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