Update: It hurts my heart and soul so much that I am not worth the help, trouble or time to my 'doctors'.
My Rheumatologist told me he couldn't help me. He suggested i find a new doctor. This after I spent a year trying to hold out like my parents wanted in hope that he was a good doctor in the long run-but my base instinct was correct in that he would only bring me harm.
He put me on this medicine that he didn't know would help but it did for two ish weeks and then it stopped working. I told him I could see the bad effects it brought, more pain like holes drilled all in me, significant hair loss-I now have half of the hair I use to( a whole new traumatic experience that I had never wanted to go through, and yes I am on vitamins to lessen those effects. I imagine I would be hairless without them), swelling even more than I already am, painfully in my hands and face. I have lost a Lot of my muscle strength and not just because I am bed-bound, even more exhausted beyond belief. If I walk around my room once I am exhausted and starting to blackout, a few other problems and the worst side effect of them all: SEVERE SCARY Hallucination!!
Needless to say I have not been helped and only added to by my MANY doctor visits here. The real concern is that they think I am just a bad patient when I just don't have doctors who want to stick it out and help me and that is the worst thing in the whole world that I can't really explain. It is like a vital part of life that everyone else gets lovely access and help with, you start off with the worst ones that add trouble and debt with their crazy costs and if they don't help you, they still get to keep your money while you are left with the severe hurt and pain.
I told this doctor a month and 2wks ago that I wanted OFF this medicine and I needed an appointment to get that but he refused and instead told me to increase the medicine 35%!
I decided that forget him I was going to try to go off it on my own. The only one who has gotten me off medicine safely with no side effects was me. I know best how to do it after all these years, how nuts is that to realize??
So I tried going off it and the pain was UNBELIEVABLE! My hands were without any use whatsoever. I couldn't move and my body wouldn't work at all.
My appointment with the Rheumatologist on Tuesday said he couldn't help anymore when the fact of the matter was a fellow doctor asked about my full body psoriasis and despite him telling me last time he didn't care to look at my full body rashes at their worst, he now cared when we finally had gotten things slightly calmed. He scoffed at our explanations and thanks to my severe horrible memory issues that no doctor will help me with, I had left my phone with pictures of my rashes at its worst, at home! So we couldn't prove the troubles not that he was in the mood to listen of course. *sigh* It hurts my heart and soul so much that I am not worth the help. They don't see me as worth the trouble and time.
The reality was that this doctor just didn't care enough to work hard to help me. And I wasted a whole year on him to prove to my parents that he was a bad doctor like I warned them after a first meeting with him. Now I am on this medication that he put me on. That is a weekly medicine so it will take me at LEAST a month and a half to safely go off this medicine and by then who knows what I will have had to go through. I am so scared and in pain too of course.
When he told me he wasn't going to be my doctor anymore he told me I could just go off this medicine cold turkey that caused me to lose half my hair, break out in full body painful itchy red rashes for the past few months, swelling body, SEVERE awful hallucinations 24/7 extra pain, blurry vision, so much more exhaustion that I can barely change clothes with help every three days and that is it. He has never listened to my side effects before and I of course knew he was wrong as he hasn't understood my meds even up til now(The pharmacist I talked to verified I was right in tapering off so score for me! ;) ), 🤦♀️
The beginning of going off these horrific meds starts today. I am SO SO SO not ready for more scary hallucinations. I am sure my parents aren't ready either.
oh my gosh I am just so tired and angry at all doctors here. none of them are helping me and just causing more issues I have to deal with on my own. I comfort myself that I called him out on his nonsense the last 3 appointments. lol that was so very satisfying. I may look young but I have been around the medical block all my life. I like to think I would make a semi decent doctor too! 😁😁😉 Heaven knows I would NEVER abandon my patients or make them take a drug that gave them horrible side effects. Effects that made them seek out a therapist and made others think they were crazy! I would actually listen to them and take note of each change they mentioned as I would recognize that they know their body better than I do.
Oh my heart. Dear friends I am so very lost and hurt and hurting. It has been such a horrific 6 months. But onward we must go because the more awful things get, the better they can become. Please let the good finally find me soon. I am SOOO Beyond ready!!!
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