Friday, July 12, 2013

Intro by Melinda

Hi! I’m Melinda. I can say a lot of things define me, but being sick is not one of them.  It greatly affects my life and how I live it, but I wouldn’t change this journey for anything in the world. I am recently engaged to an amazing man.  I am the mother of 4 beautiful boys and an incredible (soon to be) step-daughter and I am living with Sarcoidosis. A little over 5 years ago I was diagnosed with not only Sarcoidosis, but Neurosarcoidosis as well. At the time I was an incredibly active mother of overly energetic boys, I worked as a cardio instructor and had fairly recently started a career as a personal trainer.  I was in the best shape of my life…and very, very sick. I ignored it for months until one day it just flat out kicked my ass. On New Year’s Day of 2008 I ended up in the Emergency Room and on Valentine’s Day I had my first surgery.  Happy Holidays!!!  From there I started a myriad of anti-fungals, steroids, and then on to chemo and Biologic infusions.  I will never say it has been easy.  In fact at times it’s been a living hell, but after 5 ½ years of saturating my body with pure poison, I’m doing it my way.  Like Aubrianna said, we’re not doctors, but we know what has worked and is working for us and hopefully it will give you some ideas and some relief to know you’re not the only one out there.   As I said before, Sarcoid doesn’t define me.  What it has done is given me a sense of caring and compassion that I would never have otherwise.  I’ve been through a lot over that past decade and I can honestly say it has made me a better person.  Call it cliché, but I appreciate every day that I am given and I truly appreciate the life that I have.

How did the doctors find out?? ~Bree~

So, I have been debating where to start. After much thought, I came to the conclusion that I should simply begin at the beginning. When people find out I have MS, one of the first questions asked is usually, how did they find out? So... here is a 'quick' synopsis. I will go into details of each particular event, how I felt, how I coped, etc. but this is a summary.
There were clues, mostly ones that I overlooked, ignored, or dismissed as my imagination. Like many people, my first real wake-up call was brought on by a physical trauma. Mine was a planned trauma... I had a hysterectomy. I'd had female problems my entire life, and as they progressed, the logical choice was a hysterectomy. I never really healed from that surgery. It took weeks longer than it should have, and I was completely and totally exhausted. All. The. Damn. Time. It was only a few months later that the massive head pain kicked in.
In a way, I was lucky. Since my pain started in my head, I ended up with an MRI rather quickly in the diagnostic process. It only took approximately four months before they did an MRI. By medical standards, that was actually fairly fast. Now, mind you, I had already been through a slew of tests, put onto prednisone, and seen about ten different doctors, but that is pretty much par for the course. So... MRI. I had lesions on my brain. Five to be precise. Then it became a waiting game. More tests, a spinal tap, lots of blood, removal from prednisone, more tests, more doctors... No answers. Everything came back clean except the MRI. I was diagnosed with a one time auto immune attack.
A year later I had another MRI. Now I had eight lesions and the start of a ninth. I had Multiple Sclerosis. Again, I will discuss my actual diagnosis day, and how I felt soon. For now, I was actually grateful for the delays that come with our medical system. By the time I had results, got the diagnosis, and got another appointment with my neurologist, five months had passed. As a result, I managed to talk my doctor into waiting to start the medicine she wanted me on, Copaxone, until the results of the newest MRI were back. You see, if there is a side effect to be had on any particular drug, I will have it. I had already become a vegan, so I really wanted to make sure I NEEDED this medicine before I agreed to take it. After a little persuading, she finally saw it my way! :-)
The next MRI showed only eight lesions. The ninth had disappeared. NO DRUGS! And now, here I am... I get an MRI every six months, and at this point I have gone from nine lesions to six, and three of those are smaller.
So, that's my story! There is more to it... there always is. Anyone who is dealing with an auto-immune will testify to the emotional roller coaster that is sometimes a daily event. And I will discuss that. Or at least I will try. I am really, really, really horrible with discussing my feelings. But for now... At least you are caught up on the 'how' part!

Have a beautiful day!