Post-Traumatic Stress Disorder (PTSD) Support Group
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Today I began a week of doctor's visits, and it triggered me right off the bat. I have chronic kidney disease (CKD) because of years of taking lithium and Seroquel for my PTSD on the orders of my psychiatrist. Now I have twice as many PTSD doctor appointments--I still have to see my psychiatrist, and then I have to see my kidney doctor to help me survive my psychiatrist. Ironic, huh? For PTSD and CKD hand in hand.
I can't quit my psychiatrist, though, because even though psychiatrist-ordered drugs hurt me forever, my PTSD is still with me forever in my nightmares from stuff like surviving a fiery car bombing and being tortured by a military patrol abroad. I can only sleep if I get some kind of PTSD med. Fortunately, there is one and only one that isn't processed by kidneys, so I can take it: Prazosin. I got my prescription for that re-filled again today.
For my CKD, though, I had to have blood drawn to test my level of kidney function. I'm right on the edge of needing dialysis 3 times a week just to stay alive. Fending off dialysis allows me an active life. Once I begin it I don't die, but I don't have much of a life other than dialysis appointments 3 times a week. That will mean being hooked up to a machine to clean my blood for 4 hours a day after that.
To make things more depressing, today I had a rookie trainee phlebotomist in charge of drawing my blood for my CKD tests today. She stuck the needle in my arm and couldn't find the vein, so she rooted around for it with the needle in my arm. The pain wasn't just momentary, like when you get a shot. Now I have a huge painful bruise under the skin and on the skin across the middle of my right arm.
This is no way to live, and it's just the beginning. I have more doctor's appointments like this from now through January 26th. Oh, joy.
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Hey All...I hope that you have a lovely, peaceful beginning of your weekI have a bunch of chores that need doing but may put them off til tomorrow and just hang out with my landlord/roomie todayWhat about you?...Anything special going on?Have a great day and take good care of you!!..Xo
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Once again I've had a fever today. I'm not going to the hospital because that's a huge waste of time but I did schedule a dr appointment for Wednesday afternoon.
Support and prayers as you face these appointments.
Drug side effects are worry some for sure... Thus far I've been okay but the concern is there
Another hug my friend.... I hope that today will be a little easier for you.... xo
I lived with chronic kidney disease for years-basically since I was 3. My kidney slowly declined throughout my life until the function dropped to 40% when I was 23. They continued to decline and, I was eventually added to the transplant list in 2012. I had a transplant in 2017 and it changed my life. But I can sympathize with what you are going for.
Ckd is an exhausting and depressing disease. It is very isolating, and the constant blood tests can be discouraging. And because you don't "look sick" people often assume you are healthy which can be doubly depressing.
Just a thought, but have you talked to your Nephrologist about Peritoneal Dialysis, and if it might be an option for you? It is dialysis you do at home, usually every night when you are sleeping. Being hooked up to a machine at night takes some getting used to, but it allowed me to have a much more active life. I was even able to keep working part time(looking back i have no idea how I did it when I was feeling so bad).
I just want to encourage you any way I can. Ive been there--i understand getting suckie phlebotomists who dig around in your arm and cause brusing.
I understand the fear, trepidation and discouragement of starting dialysis. I would encourage you to research Peritoneal dialysis and see if it is something that you feel you could do. Please feel free to pm me anytime. Im more than willing to talk about this, answer any questions and just listen if you need to vent.
Hang in there. I know this is terribly overwhelming. Please let me know if I can help.
Big hug <3
Were you on dialysis before?
I don't understand why that doc would prescribe 2 highly likely to cause kd rx's....with long term use?
Sorry, i don't want to make it worse for you to bring it up. I've had those days when confined in a hospital or another surgery or doc appointment that you just cannot take going to. I get full on panic attacks sometimes.
But you go. You're braver than I, x 10!
I feel for you. I will pray you do not have to go on dialysis.
Tomorrow is another day.....a brighter day around the corner. From 1 broken body to another...here's hoping you can manage the doc appts and your kd and PTSD. You amaze me with your strength.
Xoxo. Jp
P.S. sometimes I setup a reward for myself by going somewhere close by the doc office for a treat like a yogurt or even hamburger after. My last horrendous hospital visit....for first time i ordered a triple cheeseburger because I hadn't eaten in couple days...and damn it...pain makes you hungry.....Ate half and gave dog half over 3 days, lol :-0
<3
I had to witness the paperwork on my hospital's behalf, then, when patients signed "Against Medical Advice" forms refusing to continue dialysis even though they knew it would mean they would die. They did, too. Fortunately, I got to see that kidney disease death at the very end was not as hard as cancer deaths and other deaths I saw in the hospital. But I took away the idea that if you start with dialysis, that's where you're headed.
When my local kidney doc ordered dialysis for me years ago, I got a second opinion at a larger medical center an hour away from my town. They've been willing to work with me. I already signed the "Against Medical Advice" paperwork with them passing on dialysis even though I only have 40% kidney function left. They understand where I'm coming from like you do, and work with me to make the most of that 40% of my kidney function without dialysis.
So far so good, though every time I come up on another kidney doc appointment, like I am Jan. 26th, it's a big deal. I can't gain more kidney function, there is no cure for kidney disease, but the blood tests tell if I've kept it from advancing again or not. Fingers crossed.
I'm going to reward myself like you say. I think for me it'll be ice cream after my appointment. Thanks for that idea, and thanks for getting what I'm going through.
I understand and I am sorry you are going through all that with the kidney disease. Will you be able to get the help you need when you retire?
Take care, do something nice for yourself this weekend.