http://www.weednews.co/arthritis-society-funds-medical-marijuana-research-fibromyalgia/
Fibromyalgia
Personal Year In Review
I wish I had fabulous things to share here as I look back on 2016, the year itself as a complete “body of work”, as opposed to how I genuinely feel about it.
Here’s the unadulterated truth; I’m filled with mixed emotions, anger, pain, and the more I think about it, additional anger on top of the original anger, which is never a good sign. I make no apologies for my honesty. I’m many things in my imperfect human way, but dishonest isn’t on the list.
I take no issue with the company in my life, or lack thereof. I am a firm believer that we all go through hard times and that hard work, love, and prayer will get us through it. I take no issue with surviving (Life should be more than that though, right?) and having a few good days here and there (Though I am determined to not allow people to ruin my days when I’m feeling good and their moods aren’t meant for me. However, this is a process. It will not happen instantaneously.), but I do take issue with things outside my control.
I am a self-admitted control freak when it pertains to a lot of things in my life, and with other things, not so much. Overall, I’m tired of my best not being good enough, and having people remind me of my failures. Never look down upon someone unless you’re helping them up. Asking for help through tough times is not a grave sin. It’s honest, it’s real, and it’s admitting something vulnerable and scary is occurring that you cannot figure out how to face on your own. Why do we diminish that?!
I was raised to believe that as long as I do my best, it is always “good enough”, because it shows effort. And then I moved to another state where I know very few people, where “my best” is NEVER “good enough” because some unattainable level of perfection is expected at all times. It makes me feel like a bad Stepford Wife. 😦 I would not know what happiness was if a radioactive spider bit my ass. I haven’t known happiness in so long, it scares me. I feel emotions, yes, but happiness is almost never among them. How’s that for honest?
My brother has been through a torturous, evil kind of hell this year. I highly suspect that whatever was done to his heart set off a myriad of other health issues because I cannot recall a time when he wasn’t under the age of ten and on antibiotics as often as he’s been this year. He has been in and out of the hospital so many times that I’ve damn near had a multitude of nervous breakdowns every single time. I am currently waiting to hear back from a surgeon as he embarks on surgery number five in just slightly over a year; which is more surgery than he’s ever had in his entire life. It worries me on such a deep level, it’s difficult to convey.
I am immensely disheartened by how uncaring and unkind people are being towards him. At the beginning and end of each day, we only have so many family members in life, and as we’ve established, life is as short as it is long. My brother & I don’t have a lot of family, so we’ve had to rally around each other and be each other’s biggest support system through what has been, in essence, the gates of Hell. I may yell at him and get frustrated, I may say nasty things to him in the heat of the moment because he pushes my buttons, but ultimately, I’m not ignoring him or pretending he doesn’t exist in the hopes he’ll simply go away. I might not respond to a phone call or a text message when I’m sleeping, and sometimes I am guilty of ignoring him for a full twenty-four hours because I can’t handle the stress, but I do speak to my brother. I might not admit this to him, but he’s one of my best friends.
I say a painful goodbye to 2016, a year that has made me suffer in ways I can’t discuss; physically, mentally, and emotionally. I hope and pray that 2017 offers me more opportunities, better work, better pay, the same high-quality friendships I’ve maintained since day one (I’ve gotta say it; my friends are the BEST friends. They’re the first people to ask if I’m okay, to see through answers when I’m 100% NOT okay, and be as supportive as they can through crises. I would not have made it through parts of this year if it weren’t for the relationships in my life, both old and new, that have helped reinforce who I am as a person.), a real directional shift that leads me exactly where I need to be lead, and a year that allows me to achieve goals I have set for myself. The big goals, because at the moment, small goals aren’t cutting it.
I’d like to see some medical breakthroughs to help me better manage my pain and overall health. I was hit in the back with a shopping cart today at a local grocery store. This woman was on her cell phone and obviously thought she had enough room and/or didn’t even see me. I swear I am invisible to 99% of the “human race”. Initially my response was “Excuse YOU!”, but the lunatic just kept on walking, loudly debating stupidity on her phone. I did not feel it was worth pursuing in the moment, but now I am sorry I didn’t. I’m not sure if she did any real damage that wasn’t already there, but the level of pain I’m in is not something I want to take with me into the coming year, or any other year. I truly think CBD oil is in my future, as the “war on opiates” in this state is far too ridiculous to pursue with a doctor. I will, but I, like so many others, need a backup plan to help manage the pain in my life. No one should ever have to live like this.
Blessings to you all, as we say goodbye to 2016 and welcome in what will hopefully a bright New Year!
copyright © 2016 by Lisa Marino & Blackbird Serenity LLC. ALL RIGHTS RESERVED.
High Prevalence of Anti-TSH Receptor Antibody in Fibromyalgia
http://www.endocrinologyadvisor.com/thyroid/thyroid-function-and-fibromyalgia/article/578542/
I’ve noticed many people have a thyroid issue co-morbid with Fibromyalgia. I’ve been tested for this and I’m negative (I’ve always tested this way.), however, if you haven’t been tested it’s a good idea to talk to your doctor about it.
Brain Problems
No, the title isn’t meant to indicate an actual health issue. Not that I’m aware of. However, Fibromyalgia Brain Fog, also commonly referred to as “Fibro Fog”, has really done a number on me this month. It was slowly progressing, but now I feel dumber than a box of rocks with twelve piles of shit on top. It’s scary, freakish, and makes me feel terrible about myself. Only another sufferer can truly understand how much pain this puts me in.
I know these are common daily occurrences for a lot of people who struggle with Fibromyalgia and other auto-immune diseases, but my incidents have been sporadic and easily managed, up until now. This weekend has pretty much brought me to my knees on the memory front. 😦
If you ask me about something from when I was two or three years old, I have complete recall of the entire moment. If you ask me why I tried putting black pepper in the freezer, I’ve got nothing. If I didn’t set the timer on the stove, I’d walk away from preparing meals and never go back (I ALWAYS set the timer, even if it’s just ten minutes, it’s loud enough to bring me back in order to focus.). I have to be 100% in whatever it is I am doing, otherwise I am going to end up cutting myself, burning myself, or forgetting what the hell I’m doing to begin with. There is nothing normal or acceptable about this.
To add insult to injury, I put notes on my phone as reminders for pretty much everything. I take this phone with me wherever I go, and yet, I still forget what the hell I’m reading and end up deleting at least 50% of the note before I’ve left most stores. It’s utterly pathetic. It’s also sad, because I’m tired of searching cabinets and the refrigerator/freezer for things I forgot to buy. I then add the missing items to next week’s list, only so the cycle can continue on in an ugly manner. I have to start each list with cat food and cat litter, otherwise it’s entirely possible I will forget one, the other, or both. This past weekend, I forgot the litter. The plus side, there’s 20 pounds of it sitting near the litter box from the weekend prior, so all I have to do is change the damn thing. The fact that I can even lift 20 pounds these days is miraculous to me. 😦
I think I would be better able to cope with this lack of brain function if I were over 75 and had achieved all of the things I set out to do with my life. I’d be able to say “Hey, I’ve lived longer than my parents. I’ve accomplished all of this. I’m simply getting older and forgetting things. It’s not the end of the world.” However, I’m nowhere near 75, not even close, and yet, my brain is suddenly turning to mush. I tried refrigerating herbs when I was cooking earlier (obviously, that’s not where they belong). As soon as I realized what I was doing, I nearly dropped all of them on the floor and burst into tears.
These incidents are made worse by the criticism of others. “Do you even have a fucking brain?”, I was asked earlier this month. “You really DO live in your own world.”, I was told the other day. These are things I’d never say out loud to someone I know is sick, leave alone healthy.
If you have someone in your life with an autoimmune disease/disorder that affects their brain function, I would like you to walk a hundred thousand miles in their shoes. I want you to spend 365 days in their body before making a single derogatory remark in their direction. Our ears are fine; we can fucking hear your offensive, rude negativity. However, if you don’t understand the illness itself, shut the fuck up. You’re not making the situation better, and how you treat someone is just as important as how you speak to them. Unfortunately, we live in a world where everyone wants respect, simply for existing, but they don’t realize their behavior is what garners respect. Moreover, we all express our feelings differently. I prefer to say a lot of things to people privately, eschewing public professions. Some people seem to have a deep-seated need for the public professions though, and it baffles me. Just because we live in a selfie-filled world doesn’t mean every single thing we want to say ought to be made public.
You can argue that by writing it, I’ve made it public, but here’s the thing; I didn’t name names. I rarely, if ever, do. I talk in code with my friends, we have our own private language, and I write in code a lot of the time, too. You get the gist of it, obviously, you just don’t have faces and names to attach to what I’m saying. It’s like reading a book. You get descriptions of characters, but you are left to your own devices as to what they might truly look like if you met them on the street.
So, even with my “brain problems”, I don’t have “writer problems”. Thank G-d and Goddess for that!
copyright © 2016 by Lisa Marino & Blackbird Serenity LLC. ALL RIGHTS RESERVED.
2016 Fibromyalgia Gift Guide
Every year I say “warm socks”. This year, I said “electric blanket”.
Written by LISA MARINO-Molchanova 