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cool09
Grand Poohbah
 
Member Since Feb 2012
Location: Eastern MD
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Default Jun 15, 2024 at 05:03 PM
 
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I am out in the sticks of East Tennessee, and I have an online group I volunteer for now when I feel like it got me on the schedule of possibly the most dynamic trauma team in existence. A psychiatrist and a psychologist who collaborate in private practice. The online organization is RAINN. Their website is a goldmine of providers if it is a different kind of trauma. If it is what RAINN deals with, they have extensively trained volunteers to assist you. I am on every Tuesday and Thursday night from 7:00 pm to 10:00 pm. If there is a provider near you, it is a good resource. there are quite a few of us, and RAINN has been around for a minute.
I've been in crisis the last 8 mths since I started prozac and my mood was so tortuous every morning and one morning I felt like I was dying and called my brother and he called 911 (which I didn't want him to do because I will never go back to a hospital or ER after dealing with many, many abusive hospitalizations the last 35 years!).
Anyway, paramedics and police came out and I couldn't calm down because I felt so bad. I told the paramedic I didn't want to go to the hospital and told him my life story and he was very nice and said he understood everything I said. After 45 minutes he said my vitals came down and I was coherent and saw no reason for me to go to the hospital. But he said he wanted me to talk to Crisis.
So I've talked to Crisis 6 times over the last 3 mths and NONE of them listened to a thing I said! And 2 of them hung up on me! I will never call crisis again! Two of them told me I need to give meds a chance and experiment with different doses and I told them that's EXACTLY what I've been doing the last 35 years with 99.9% no relief and they didn't listen! They also said I needed coping skills. I told them coping skills are only good if you enjoy doing things - I've had anhedonia really bad the last 20 years and I don't enjoy anything except music anymore.
Therapists have been a complete joke the last 35 yrs. I was in therapy for 3 yrs a couple yr ago and she had me walking, riding a bike and swimming and I couldn't stand any of it! And none of it helped my mood or energy so I quit! I've exercised extensively my whole life and it never helped my mood or energy at all. I swam every day 10 yrs ago for 8 yrs and felt fantastic for 2 hrs afterwards then went back to feeling horrible the rest of the day! And I had to take a nap every afternoon! (17 ECT treatments in 1992 destroyed my energy and nothing I've tried has helped since. After ECT I spent 2 yrs in bed, went on disability and into a halfway house which was traumatic!) And I've had 4 more ECT trials since then with no relief at all!

And my Dr stopped prozac 6 mths and nothing at all changed! It gave me insomnia and my days and nights are still screwed up. I'm sleeping now but my sleep is absolutely horrible! I get to bed around 5-6AM and wake up several times in a terrible mood and get up after noon totally exhausted and in a horrible mood and it takes me several hrs to get out of bed.
Things have improved a little the last 3 wks since I started 3 new meds - my symptoms are manageable for 4 hrs or so and I can go out now (going out the last 8 mths was horrible and difficult because of my energy, irritability and not feeling like myself). But the rest of the day I have to lay down because my energy and mood are not very good. And I told my Dr last week I can't go on like this. I want the WHOLE day to be good and all he said was "At least part of your day is good". He doesn't get it! And no one else does!
He prescribed caplyta this week and said it would help me and my insurance covers it but it's $700! I called caplyta customer service to see if I can get a discount and they said maybe if I get a voucher from my Dr. I wrote and called my Dr the last 2 days telling him about this and he never responded! I want to take caplyta REALLY bad!

Nobody understands what I went thru when I was younger and dissociated. No health professional the last 10 yrs has wanted to talk about it or my personality disorders or asbergers. I stopped feeling things around my family and friends when I dissociated in my teens/20s/30s and had all 4 stages of dissociation mainly being not being able to identify with myself. I couldn't feel myself and couldn't talk at all because I was so detached. I didn't talk for most of my life. I just learned to talk a few yrs ago and I still feel strange when I talk - I don't feel anything when I talk and I still don't fell anything around people or feel I can connect with anyone. A resident at Johns Hopkins in 2017 said I had asbergers and didn't explain it and didn't tell me how to get help for it. Another resident did send me to Hopkins Autism clinic and it was the WORST healthcare I've ever had! The Dr and therapist didn't want to know a thing about me so I stopped going! I really don't think I have asbergers, I still feel I have residual effects from dissociation because I've had to relearn everything over since that happened - I lost the ability to connect with and enjoy being around people. I told my present psychiatrist all of this and he raised his voice and said "You're trying too hard. You have a loop in your head and you have to stop!". And my present Dr is the best DR I've had in 35 yrs believe it or not - he cares about me and tells me he wants to help. All the psychiatrists I've seen between Philly and Baltimore the last 35 years have been completely incompetent and could have cared less about me!
Thanks for your reply but I'll never call Crisis again.

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Thanks for this!
16PennyNail