Haven’t Written in a While

First, I’d like to admit; The family get-together for “Thanksgiving” was actually really nice. It wasn’t nearly as awkward as my first Christmas with the family two years ago (post amnesia.) We had a great time. I’m proud to announce that the entire day beforehand, I baked six dozen cookies (3 doz of two different kinds,) and made meatballs with our new family tradition cranberry BBQ sauce. Everyone enjoyed those! 🙂 Lastly, I made two snack trays. One with meat and cheeses, and crackers – and one with veggies and dip. I attempted to make them look like turkey tails, but they came out looking more like delicious hand-fans. LOL

Secondly, I’d like to admit some personal medical journey stuff – which hasn’t been easy.
The medical system in mid-Missouri is old-school and is rather difficult to navigate if you have any serious health issues or diseases. Having stated that, I do know they’re doing the best they can with what training and knowledge they have. I do know that all medical care professionals have to get mandated updates to their practicing licenses, but that doesn’t mean they’re up to date with all of the medical research breakthroughs and updated medical science practices. For me, that means that my Dr and LPN are unaware of the breakthroughs of brain sciences and treatment options. Matter of fact, they’re about 20+ years behind.

For me, that means neglect of epic proportions. As a medical care recipient and “customer” of their services (or lack there of,) I am responsible for how I present my medical problems, and they’re responsible for what to do after they’re made aware of my problems. The issue is, they don’t know there’s new treatment options and ways of dealing with the medical issues I currently have. This peeves me off something fierce. I attempt to let them know that through my own personal research of options, there is more they can do. Obviously, as professionals, I’d expect them to look into this newly updated science and get back to me about their best-practice and treatment plan options, but instead, they think I’m judging them or how well they can perform their jobs…. which absolutely isn’t the case — until they’ve made it clear that my input isn’t valid. THAT’S when I judge them based on what they’re NOT willing to do.

It is EVERY medical care practitioner’s job to do the best they can to prevent and treat medical issues. They’re supposed to disregard their egos and do what’s best, and most current, for their patients. This hasn’t been the case for me about my brain injury. Matter of fact, they’ve done the least possible to treat my cognitive, emotional, and executive function issues post-TBI. My physician actually told me to go see a therapist – which isn’t a bad idea, since I’m scarred emotionally based on the fact that my medical-caregivers are lacking enthusiasm or dowithall, to do anything at all to treat my brain injury side effects. I’ve been made aware that my memory loss may never return to normal, which I have accepted – but to tell me there’s nothing I can do but go to a therapist for brain-function issues, is absurd and downright belittling. If I had cancer, would they tell me the same thing? I DOUBT IT!!!

So anyhow, on the plus-side, my LPN referred me to a rheumatologist for my bone, muscle, and all over body pain and stiffness, and the fact that I have psoriasis (since birth.) She diagnosed me with Fibromyalgia, and has ordered numerous X-rays to see what’s going on with my bones. The truth is, I’ve been physically abused for almost my entire life until recently when I took back control and decided being alone (not in a romantic relationship) was better than being abused. Seems like common sense to most people, but until my brain injury, I must not have known I was in-fact being abused – because it went on for many years without my getting away from it to heal and get emotionally healthy again. Not only was I abused by my biological father (which I don’t call, “Dad” – I call my stepfather “Dad” because he’s been a real Dad to me since I was 15,) but I also put myself into situations where my job positions and choices in life were damaging to my body. Now, I’m anti-abuse, anti-damage, and anti-hurting.

I have to go to the hospital in the network of that rheumatologist soon and get those x-rays done, and then I have more blood work tests to be done because I’m deficient in Vit-D3, really badly. I’ve been ordered to take 10,000 iu’s daily of for a month, on top of my fish oil, B-complex, and folic acid. (Which is a bummer – but I’d rather take vitamins than pharmaceuticals any day.) So, that’s what I’m doing – and we’ll see those results likely next month.

The rheumatologist also referred me to their network’s neurologist! How about that?! It took an arthritis doctor to refer me to a neurologist… hmm…. so for that, I’m VERY grateful. I’m not going to allow this visit (in January next year) to go to waste. I’m going to tell her (the neurologist) all about my issues, and make SURE I’m heard and that she does something for me. My physician dropped the ball, bigtime, on that one. He referred me to someone who was retiring two weeks from my appointment date. The guy (neurologist I was referred to first) literally told me that he was retiring, he “made his career off of paxil” and then proceeded to prescribe me paxil instead of doing the neurological tests I was sent to him for. Seriously! That happened!!! Suffice to say, I NEVER took a single pill of paxil, and later found out that fresh brain injured people are not supposed to take medication of that nature, or ANY SSRI’s of any kind! Huh!? Ya! What a freaky trip… this retiring neurologist never once told me he was referring me for treatment at the brain rehab, and I was never informed that I was to start treatment there a year ago.

I only accidentally found that out after grilling my Dr’s office personnel about why nothing had been done as far as treatment goes for me, the appointment I had the day before my birthday this year. The office lady told me I was a “no show” at rehab, and perplexed and appalled, I told her I’d never known I was to start treatment there, and was never notified – not through mail, or phone calls, or even from THEIR office who had the information in the FIRST PLACE!!! I asked this office lady if I should contact the rehab center to let them know I’d never been notified, and she told me not to. She said they wouldn’t even consider treating me after being a no-show. I about lost it!! I haven’t contacted them yet, but I’m going to.

Okay – now that I’ve completely upset the heck out of myself by finally writing about this mess, I’m going to go take care of myself – be extra kind and gentle with myself – and probably watch a cool movie to calm down. I should also eat something – since I only ate once yesterday and am feeling that emptiness in my gut from “hunger.” I put that in parenthasis because I don’t actually feel “hunger,” but rather I feel that I should eat something. Weird? Ya…. brain injury side-effects are indeed weird! See y’all later.

Thanks for reading. 🙂

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