Category: autoimmune diseases

Hope for non-powerhouse singers

by Just Mai 2 Cents, posted in autoimmune diseases

Well the time has come! As a black singer there were a group of us with low confidence and self-esteem when it came to singing. Whitney was the benchmark for singing and if you didn’t have a powerful southern gospel voice you sometimes felt a little inadequate. I did anyway, and so did a number of my friends.

Someone once said to me “you can learn how to do vocal gymnastics for days but your tone, you’re stuck with. Either you were blessed with a nice tone or you weren’t. NAZ you have a very beautiful tone.” I never really appreciated at the time, just kept beating myself up for not having a voice like Whitney or Arerha Franklin.

But not there are artists like H.E.R. who are mainstream and sound more like me! Mellow, Sultry with these beautiful tones. Really different writing styles also. I’m just so happy to hear some more diversity.

Who knows maybe you should look out for N.A.Z. because there seems to be a place where I fit in now.

Enjoy your weekend my lovelies.

N.A.Z.

Reason for Name Change

by Just Mai 2 Cents, posted in autoimmune diseases

Well previously my sign off name was AQ. I changed it to NAZ. where did that come from? I met a Hindi speaking person and they were saying the name Na-soo-ria meant life and sunshine in Hindi. I have yet to find the correct spelling anywhere but I like it. I spelled it with a “z” and go by Naz for short. Later N.A.Z. Became an acronym for “not anybody’s zero”. I’m frequently underestimated and dismissed because of my disabilities and because certain people expect nothing much, I’m then labelled as “high functioning”. I also hate that term but can’t think of a way to articulate what “high/low” functioning means without actually using those words. I’m open to suggestions.

Anyhoo that’s that.

Have a wonderful week my lovelies,

NAZ

Compassion from the Crazies

by Just Mai 2 Cents, posted in autoimmune diseases

First of all assume “crazies” is spelled with quotations. I jokingly said I wanted to reclaim the words “crazy”, “insane” and “nuts” the way some black people have reclaimed the “n” word. Of course it is meant to be understood that those words are in quotations. And can only be spoken by those who fall into the category of having “lived experience” with a mental illness. I hate the terms lived experience and consumer survivor. Call a damn spade a spade I say. I have since found out that my trailblazing mentor, who has since passed, was trying to reclaim those words as well! My grandmother always said “great minds think alike… and fools seldom differ” hahaha. My mentor was definitely a great mind. I use them jokingly among my village of supporters sometimes. It lightens the mood a little sometimes.

Anyway, when I was in the hospital there was a patient who didn’t speak the same language as me very fluently. I had issues with not having an appetite and not eating. They noticed and would often motion me to come closer and give me a piece of food and watch closely until I ate it. It was actually a beautiful exchange. One “crazy” person clear enough to see, in the midst of their own psychosis, that I would benefit from a piece of banana and not to offer me the whole thing because it was just too much at the time.

Sometimes that same person would motion for me to lie down because I was becoming too overstimulated and needed a break. That touched my heart.

We’re more than just our illness.

Take care my lovelies,

Naz

Being Under-medicated is an issue too?!

by Just Mai 2 Cents, posted in autoimmune diseases

Well my friends it’s been a while since I’ve written. It’s been crazy literally and figuratively! I’m going to give an overview of what happened in this blog and then I’ll create other blog posts that are related to experiences that let up to this situation.

I’m not going to reread the previous blog posts at this point because I may find them painful or triggering. There may be some repetition. My grandmother always said “repetition is good for emphasis” so let’s pretend it’s deliberate and I’m emphasizing lol.

So I likely mentioned the fact that I was on a benzodiazepine called clonazepam. It’s fine when prescribed as PRN (take as needed) that how I took it for years. Sometimes only twice in a month sometimes twice in a year. But due to doctor prescribed discontinuation of another medication I ended up going through withdrawal starting June 2019. I’m still experiencing the effects to this day. My doctor left (a whole other blog coming on that later) after putting on 3 x 0.5 mg of clonazepam daily as opposed to 1 x 0.5 mg as needed. The reason for this was the withdrawal from the initial medication created chemically induced insomnia, anger, anxiety on steroids that I’d never experienced before, nightmares and “weird” dreams and my PTSD was in high gear as well.

Eventually, 7 months of taking the 1.5 mg of clonazepam daily (really not supposed to be more than 1-2 months (whole blog coming on that) a got with a psychiatrist that was slowly taking me off.

I ended up going to the hospital voluntarily not because I thought I was delusional but I knew things were off with my sleep and my meds. My pharmacist and the in patient psychiatrist both agreed that the psychiatrist had me on 2 little clonazepam and that was the cause for all of my symptoms. Had this been a bipolar episode I would have been in the hospital for months. Not 5 days. I experienced true psychosis and it scared me to death.

Sooooo much more to say on this and I will. But I’m super tired.

Take care my lovelies,

Naz (I’ll explain the name change later)

Are you sick of your doctors pathologizing symptoms or dismissing everything as side effects once they find out you have a mental illness?

by Just Mai 2 Cents, posted in autoimmune diseases

This has really been pissing me off as of late. (and that’s the understatement of the year). My whole issue is that I was taken off a psychiatric medication 1 year ago.. I called that “the beginning of the end”. I’ve probably mentioned this in previous posts but I have ridiculous memory lapses. It was the beginning of the end of life as I knew it. Still suffering from the effects of that over a year later.

So yes I understand that many psychiatric medications have side effects.. And sometimes even worse withdrawal. But just because it’s on the list of side effects, doesn’t mean it’s not also a disease or physical health issue. And If over 15 years of psych meds I’ve consistently had 5 main side effects and now I have like 97 (probably an exaggeration I haven’t counted).. Sure maybe they’re listed as side effects but maybe there’s also something wrong with my physical health that’s being ignored. My pharmacists, psychiatrist and psychotherapists are all scratching their heads because they can’t figure out why I’m having such rare and severe reactions to medications. Some of which I’ve been on before and had no reaction to. The pharmacist did explain that when I started certain meds 15 years ago my body is completely different today so it’s not as uncommon as I would think for something to have worked before and not to work today.. or for a side effect not to express itself for 14 years. I still feel skeptical about that.. Just the amounts of things that are going wrong.

I’ve also given into the whole “it’s a side effect so lets ignore it” thing. Side effects of 2 of my meds were joint pain. I had this horrible pain in the joints in my foot. Excruciatingly painful to the point where I thought it might have been broken (not sure how I would have broken it because I’m not exactly a speed demon on my cane lol). I put off getting it seen to because joint pain was a side effect. Went to my doctor and he couldn’t see anything in terms of inflammation. I had a feeling in was arthritis. He had it x-rayed.. It was arthritis. I found this strange. I had expected arthritis in my spine because of my condition. I actually already have arthritis in my spine. But in my foot?? That is not a side effect. I got scared because there are actually 360 joints in your body and I was concerned that I could get it in more joints. I do have pain in other joints. I’ve been keeping track of all of my symptoms/side effects/withdrawl symptoms. Many of these overlap with a few actual diseases. Specifically autoimmune diseases. I’ve been convinced this whole time that there is some kind of underlying physical health condition or disease. Once it is diagnosed the health care “professionals” would realize “oh it’s not 97 separate random issues.. they’re all components of this one disease” I’m convinced they will figure this out after I’ve died from the disease. And they’ll be like oops.. it wasn’t only side effects.. and it wasn’t due to the grief of losing her psychiatrist. (he’s not dead he was allegedly on medical leave but I’ve found out that there was a complaint and investigation about him. There are certain things he needs to do before he can be reinstated). If I hear that one more time!!!! I have been through so much crap in my life and you’re trying to tell me the reason my body is having these strange and rare reactions is because I’m “not expressing my emotions about my psychiatrist being on leave so they’re coming out physically”. wtf?!? What do you know about what I have or not expressed?? Did you even ask me? You’ve seen some of his other patients and they’re “taking it really hard” so you’re going to paint us all with the same damn brush. Seen one crazy seen em all?! If anything I have intense anger towards him and I fell I express that extremely well. F*** outta here!. Yes I’m aware of the mind body connection. Yes in other areas of my life that is definitely true. But you are off the mark here. Don’t use big theories you don’t understand. Sorry is my irritation showing? Well at least I’m expressing my emotions right?

So my doctor was going to send me to a chiropodist/podiatrist. I was thinking.. wouldn’t it make more sense to see the specialist that actually deals with and assesses inflammation and arthritis first!? Also a cardiologist because of some of my sypmptoms and test results, I looked it up and it’s a rheumatologist. Why am I, the patient, the person the one to look that up and bring it up to him and now he’s doing the tests? I’m not even mentally stable. Why am I doing your job? Yes I’m anxious but if you mention that as the cause one more time! I’ve had anxiety since I was 8. These things have not happened before. Something different is happening here. I’ve seen the results to the tests he just ordered. He can’t ignore those numbers. It will be an interesting conversation.

Unfortunately sometimes you can’t just sit back and expect the health care professionals to do their best, do their job, go over and above. I’m researching as best I can which is so anxiety inducing but If I hadn’t been researching I wouldn’t have discovered some pretty important things. Frustrating to say the least.

Something to keep in mind. I work at a mental health agency and they ran some statistics and found that I think over 90% of our client deaths were physical health related. Mental health you would assume the higher percentage would be suicide. The reason I know what an internist is because I’ve accompanied clients to their appointments. Internists deal with people who are on multiple conditions and have multiple physical health conditions. That describes so many of our clients. No coincidence that clients on 7+ psych meds also have a lot of physical health conditions. The medications are toxic but I still take them because what’s the alternative? But who’s “crazy” the person who takes a pill that will not cure them, causes many side effects, even worse withdrawal effects if you try to come off, causes obesity, diabetes, heart conditions, kidney conditions, thyroid conditions, lowers your life expectancy….. but yes doctor… I be takin my poison… I mean meds doctor… I sold my guitar and piano because I can’t play them anymore because the hand tremors doctor… my brain is slow but I still be takin my poison… I mean meds doctor.. now I’m obese but can’t lose the weight because the poison… I I mean meds changed my metabolism and I can’t loose it doctor… so now I’m at a greater risk of diabetes doctor. Thanks!! (that was dripping with sarcasm and disdain in case you missed that) And a psychiatrist that was one of my colleagues actually said “there’s no way that client can lose the weight unless they come off all of their meds” That’s how the psychiatrist knew the client was off the meds.. because they were losing so much weight. Wow.

Anyhoo, to people who are on psych meds and for he doctors who treat them. Don’t be so quick to dismiss things to being psychosomatic or side effects because sometime they’re also symptoms of real physical health diseases/conditions.

Anywho that’s the end of my rant for now.

Have a lovely weekend my lovelies. I actually have no idea what day it is today but I’ll go with that.

AQ