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.
I Never Said This Was Okay
Friday, July 12, 2013
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!
Wednesday, June 26, 2013
Hello and Welcome!
Hello and Welcome!
First, I feel I must put a few disclaimers out there... We
are NOT doctors, nor in any way medical professionals. Everything we discuss is
simply what has worked, or not worked, for us personally. ALWAYS work with and
listen to your medical professionals.
That being said, what we intend to discuss is simply our
individual journey through two different auto immune diseases. So... let us
start with the introduction.
My name is Aubrianna Hunter. I am a wife, a mother, an
author... and I have Multiple Sclerosis. I hesitated to write this blog, in
fact, if I'm being honest, I'm still hesitant even as I make this first entry.
You see, I don't think MS defines me. I didn't want people to ever look at me
and think, "Oh, that's that author that has MS." (Feel free to
substitute wife and mother for author.) Also, I pretty much suck at talking
about feelings. I know, go ahead and feel free to laugh at the romance writer
that doesn't like emotion...
Okay, not that you've gotten that out of your system... I'm
actually quite serious. I have no problem understanding emotion, writing about
it, I even enjoy delving deeply into the feelings of my fictional people.
However, when it comes to me... well, I'm a bit more closed off.
Which is part of why I have asked my best friend in the world
to help me with this blog. Melinda is much better with emotion than I am. She
has also had a totally different journey with her illness than I have. In fact,
she led the way and I was more than willing to learn from her experiences and
they have indelibly shaped the decisions that I have made regarding my own
illness.
Therefore... please join me in welcoming my best friend in
the world... Melinda Krug!
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