What is a sympathectomy and can it reduce the pain of CRPS?

http://ehealthmagz.com/2019/01/08/what-is-a-sympathectomy-and-can-it-reduce-the-pain-of-crps/

If it involves needles, do your homework. If it’s surgical, do your homework. If it’s an implant of any kind, PLEASE DO YOUR HOMEWORK and look at failure rates. They’re ENORMOUS and you deserve better. Surgeons are always happy to make an incision, but you’re the deciding factor. It’s your body. We only get one.

When a Friend Asked How I Can Function While Constantly Dealing With Pain

https://themighty.com/2018/04/functioning-with-chronic-pain-fibromyalgia/

No one asks me at all. They just assume I’m perfectly healthy because they have no idea what is going on internally. After a while, it’s tiresome to hear “You look great!”

I Heard…

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This quote is basically my new norm. I had to make a serious decision this year regarding my health, and ultimately I had to choose to make my health my first priority. There was no one to consult with on that. No one was going to prioritize it if I didn’t do it myself; a basic fact. 

Here I am at the end of November, still focused solely on my health, and a list of goals I’d like to achieve sooner rather than later. I am determined, but I’m also exhausted, sleep-deprived, in serious pain, and trying to be strong through all of it. I am currently on a steroid taper for a skull-flaming migraine. I barely know my own name after the past 48 hours, so bear with me. 

I see my stats and I know I am writing less here. Well, I’m posting less, but please know I am still writing. I’ve got multiple posts in the pipeline (one needs fine-tuning before it goes live). My time has predominantly been spent going to and from the hospital, to testing, to doctor’s appointments, and I’ve had two in-office procedures done this year where my migraines are concerned. The next one is in ten days, except now I know some of what to expect from it. No, I am not taking a CGRP drug and for the foreseeable future, it’s not on the table as something I would personally consider, nor has my doctor mentioned it as something she’d be willing to prescribe.

I’m grateful for the handful or so of good people and their AMAZING office staff, who have been incredible to me this year. From May to present, I have been deeply blessed with the people who’ve been taking care of me, who’ve listened to me, those who are my treating physicians and are proactive about it. We live in a current medical climate where doctors often behave in such a superior manner that you contemplate kicking them, just to see if they’re human. I REALLY lucked out with two of my physicians. I have a lot of respect for down-to-earth doctors who treat me like a peer and/or treat me with the respect I deserve as the sufferer. Not everyone can master this, but two of them have, and it makes me feel like there’s a real team behind me for certain things. When your doctors actually encourage communication and they always make sure their staff is being good to you as well, it’s a nice feeling.

For all of the medical issues I endure, writing has been a constant in my life at all times. I don’t stop thinking, speaking, believing, or writing the truth; not ever. I can step into fictitious worlds I’ve developed when I want to, but for the most part, I’m going to live in the truth and keep that steady.

I will be featuring more medical pieces going forward, but I will still share other views, as well. I’m not changing as a person (I’m growing. There’s a difference.), but I am thinking more about the overall message I want my readers to receive.

In short, I am wishing you all a fabulous, healthy, happy, safe holiday season. I’ll be back with some good talking points ASAP.

li      

Is There A Time Limit On Grieving The Loss Of Your Health?

https://themighty.com/2016/12/grief-timeline-getting-sick/

I think it’s safe to say no on this one. There’s no time limit. It can remain a shock to the system for quite some time.

I tried really hard to have a good day today, but towards the end I couldn’t walk properly and I was struggling with my vision and breathing. I couldn’t think. I came home and looked in the mirror for some visible sign that I was well and truly “done for”, but came away dejected because I see what everyone else sees; someone who visibly looks healthy. It’s really frustrating. 😦

Brain Problems

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I have exactly ONE PERSON in my life who has done the research and offered his help. Out of so many who could use their brains, my cousin chose to use his.

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.

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Some Headaches Are Caused By Neck Problems

Some headaches are caused by neck problems