Psychosis

It's a devastating and terrifying place to be in where reality becomes so distorted that you aren't sure if you can even trust your own feelings and thoughts. I don't have anyone to talk to, I feel embarrassed or ashamed of my disorders that when I hear my voice saying the words out loud it's as if I'm confirming that I'm crazy.

Well it's been quite a journey on my path to getting help with the crazy stew (my brain). Seems like where ever I seek it it ends up taking much longer than I expected. (Months long wait to even get an appointment) Which is discouraging and I feel like the crazy stew is about to boil over... My husband and I were evicted during the holidays and we've been staying in a shelter for about 4 months now. There's almost 200+ other people here as well so, social anxiety be damned.... Really my anxiety (along with my bipolar disorder) ultimately just damned me instead... Most of them are nice, friendly folks but I just prefer to keep to myself (my husband is the social one). I've always been quiet, reserved, shy. Lately I've been wondering if that is why I'm battling the belief that everyone is against me.... I'm a little all over the place here, but since I'm still trying to get a doctor/therapist, (shaman even, or voodoo master will do at this point) but there isn't 1 in sight just yet, I came here. Thank you for taking the time and being here to listen to (read) about a few of my woes. I greatly appreciate you.#L

#L

I am a person in their seventies who believes that they are on the autistic spectrum but has never had an official diagnosis and can't afford to pay for a private assessment (atrocious work record - thank God for the national pension).

I am a highly sensitive person as Eileen Aaron describes it. I occasionally feel wax falling in my ear canal, like it's a cave in and notice fleas crawling in my hair, if the dogs pick them up. I suffered more than twenty years of migraines, have digestive problems and hay fever but seem to be still alive.

You could describe me as suffering from the little professor syndrome as I have dissected English and turned it into an eight book series, plus have a blog where I analyse human behaviour (https://anemptyhead.quora.com).

I also write short stories, flash fiction and the occasional poem. I also create collage artwork and am into photography as well as recently creating dioramas in display cases (https://www.deviantart.com/paigetheoracle /).

I had four special relationships that included two women diagnosed with schizophrenia, although one insisted she was just depressed. Another girl may have had a schizoid personality and a fourth post partum psychosis, abandoning her new born baby and the rest of her family, travelling halfway round the world to the UK (now in a stable relationship that has lasted thirty years).

Months ago I was at my very worst. My health had gotten so poor that I was fully bed bound and unable to do anything on my own. I also needed constant care with my memory getting so bad I forgot my name, who my family was, all friends a missing blavk hole where they should have been in my memory. I kept getting lost and confused not remembering basic words and my hands were still excruciating with their inability to work getting even more drastic. My pain was a 10+ though doctors only think pain is a 1 to 10 we know it still can rise to the thousands.

Suicidal thoughts were so bad I was actually planning though losing a best friend's to suicide at 15yrs old still kept me and will always keep me from taking a step no one can come back from that haunts family and friends and leaves things so very messy and heartbreaking.

My so-called pain doctor was still doing nothing after 3 years and countless appointments begging for help I'm any form. He kept me on the same teeny tiny dose for years and wouldn't try any other meds or any other options. I had had no episodes ever of overdose or failing any drug tests but still he refused to help at all despite my first appointment with him where he promised to help me get to where I could shower and dress myself daily.

I wanted to ditch him as my doctor soooo many times despite him being my third and last option since we hadn't been able to find any replacement.
I realized the stress and misery he brought me always and especially after every three month appointment. It wasn't worth the useless dose of medicine I was on. Many doctors left me in a lurch to taper off my meds on my own. I knew how to do it so I called and said I was dropping him as my doctor. From that moment on I felt relief like the biggest weight was gone. Yes my pain was excruciating but my mental health was the biggest mess because of so many doctors refusing to help and leaving me since I was 'too complicated for them'. They just didn't want to put in the work at time.

Why be a doctor if you don't want to help anyone?!

Steadily my mental health improved immensely. I had moments where I was happy though still in pain. Naturally I am a very optimistic and happy soul but moving to a new state and having the cruelest doctors unsurprisingly made me so much worse.

I have a home health nurse that actually wants the very best for me and that was priceless and enough.

And then I got a brilliant and lovely rheumatologist who actually asked intelligent questions, explained answers, and was invested in taking as much time as needed to finish solving my health. He UNDERSTOOD!!! And at my second appointment with him he told us the answers we had been searching for for 17yrs! Since I was 13.

On top of my many inherent diagnoses I had psoriatic arthritis spine arthritis, and rheumatoid arthritis!!!!
The thing that we all thought was lupus but just barely didn't fit was the psoriatic arthritis!
It was the last piece of a puzzle we had tried solving many a time.
Interestingly I had finally narrowed my research to these diagnoses and was months away from figuring it out too.
But I was very happy to have the answers early!

My first appointment with the rheumatologist he gave me arthritis medicine and WOW did it work and so much better than any medicine my hundreds of doctors over the years had tried.
My hands improved!!!! I had feeling in them again and was able to do so much more than I had since I was 16 when I had my waist down reconstruction surgeries that would lead to arthritis all over my body especially to where I was completely unable to use my hands by 17. It was so embarrassing and painful that my body seemed so intent on not working eight. Oh how I just wanted you be normal!!!

And my last but of good news is I at LAST got a new pain doctor after being without officially for three months. My mental health anxiety and depression had improved so that my stress and thereby my pain had decreased to #9 on the pain scale!!! After being a 10 for almost 8 years!!!!!

My new pain doctor was COMPLETELY the opposite of my last one.

From a guy who ALWAYS worse fancy suits and thousand dollar shoes to one in jeans and a t-shirt.
From a guy who never smiled and wouldn't put in time and effort to a guy who smiled the whole appointment and was ready and Excited to put in the work to help me live my very best life!
From a guy who was too proper and cold to one who was so friendly and happy about his job.
From one who was terrified of any teeny hit of using medicine to one ready to take any risk if it meant helping his patients be safe but with less pain.

My new doctor was like the twin of actor Vin Diesel and he was so SO SO tall!
Even better since the drive is so hard for patients to do always, he would do telehealth for two appointments, one in person, and then another two telehealth appointments etc. Yay!!!!! Hallelujah!!!
Lol I was and still am so happy! And he wanted a telehealth appointment a week after the first appointment yo make sure my new meds were the best option.

For YEARS I have wanted a doctor who was there to help always and one who helped me with my meds rather than drop me in a black hole and leave all alone to figure out and guess by myself. To actually be a TEAM and work together to help me help my body so I would LIVE like I had begged all my doctor to help me to no avail! I could have a LIFE that I loved and do fun things and spend time with my family!!!! No more sleeping life away in pain and misery and hopelessness!!!!
It only took 17 years! Haha!

So now I am BACK and back to my happy self. I still have aches and pains full body and I have all my health issues and more besides but I am in a better place than I have ever been.

All of your support and love and encouragement to take time for ME was what I needed. I am so thankful for it and for all of your help over these many years.

Now if only it could get easier to post with no problems like before I would dare to call life quite perfect right now ;) 🙏

So consider this a reminder thar life is worth it! If things suck now, just remember that if one day they come up with something that can help you and your conditions, I PROMISE you will want to be around then to live your best life.

Hold onto hope! DON'T GIVE UP!! Please please don't. Through sheer will and the grace of God I am still here and gosh do I look back now and say it was worth the wait I wouldn't want to relive it lol but having a possibility to go to the movies again and do fun things out in the world with my family? It is priceless! Please hold on. Please. You and your best life are worth it! You are Not alone in this.

I am cheering you on and I am on your side. Your happy is out there! You CAN do this!!!!

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