Lately I have kept a lot that is going on (medically) with myself... To myself.
I am not quite sure why... I guess I don't want to burden anyone else with the bull-**** I am going thru.
As you all should know this past July I had a decompression surgery/ craniotomy for something called Arnold Chiari Malformation... But that isn't the only major news that I have...
I am honestly annoyed with not having anything positive to post on my facebook. But hey it's the truth and it's real it's what's going on in my life there is no other status I could update my friends on and that is the kind of person that I love myself for being::: TRUE!
But then again...
Maybe it feels safer to keep it all inside.
Or maybe I am sick and tied of talking about ME (I think it has a lot to do with this one)
Well I guess there is no other way to put it but say my life is in shambles. (What is the definition for that word anyways... Shambles =A scene or condition of complete disorder or ruin
OR Great clutter or jumble; a total mess)
OK I AGREE ON THAT! WELL AT LEAST THE TOTAL MESS PART.
I constantly ASK MYSELF why me or why do I have to suffer with all this crap.
I think I am still searching for the answer to that...
I just hope I find the answer soon... Or at least the me that feels content being "ME"
I am learning so much about myself lately and WHY I have, do and will continue to feel "not normal".
Because to put it into Perspective I am not normal. Or the typical per say "normal person". I am also not deathly sick... But I am sick.
So here is the DL. On what's going on.
I have been seeing a million doctors this past year of my life and even more now then before the surgery. The surgery left me with a lot of new pain a lot of weird symptoms and most importantly shoulder blade and scapula problem.
Physical therapy has helped a bit but I think the pain has just become "normal" to me. I just deal with it. I just have to. RIGHT?
Kind of like my headaches. They suck pretty stinkin' bad but I just deal with them. Heck yeah when I think about how I hurt I can burst into tears because I FREAKING have these dang headaches EVERY day of my LIFE!
It makes me sad most definitely and it makes me depressed and get down on myself and life A LOT.
I need that happy median like I stated before.
I just hope I find the answer soon... Or at least the me that feels content being "ME"
Lately I had been thinking about second opinions so I have taken it upon myself to go out read and search for new doctors to get a jist of what they all think is going on...
So far.
I have been told by a orthopedic surgeon the only way to take away the pain in my shoulder area scapula, rhomboids and lower trapezius is to FUSE my shoulder blade to my first rib... But I would have no range of motion in that are.
HECK NO.
Then I went and saw a new neurosurgeon that I read about being one of the best in Chicago and he took a look at my old MRI's and new MRI's and told me that my chiari malformation was the WORST he had ever seen and he understands why I had the surgery and why they removed so much of my skull and whatnot but basically told me that the only way to solve the HEADACHE issues is to yet again... FUSE my neck to my spine. Which would lead me to no movement in my head.
HECK NO!
So deciding that I had better stick to the doctors whom I know and have NEVER told me they were going to make me a robot...
So I had two doctors appointment with my original neurosurgeon this past thursday and my original neurologist.
I feel like GOD was leading me to go back to the source. Back to the people that HAVE seen inside my head (literally) and I had trusted with my life before.
So I met with Chandler first (neurosurgeon) talked about A LOT I mean A LOT of stuff and problems and wondering what the heck is going on with me...
He decided after talking that something was going on with my nerves. Something was being OVER worked, sleep was an issue and not resting and he put me on a anti-seizure medication (very low dose for now but wants my body to get used to it and then go up and up from there)
He also requested that four weeks after taking this WILD PILL (oh yeah it makes me a bit trippy at night after I take it) that I get a sleep test done. Yay I just love staying at the hospital guhhhh...
After him I met with Dr. Shepard to go over a neuro-test. He seemed very confused and worried about my shoulder blades... BOTH now. He said they are winging pretty bad. Which means they dip out even when my arms are to my sides. He was also concerned about my left side and all of it's problems.
After talking about my family history of muscular disorders he left me with saying he thinks the medication Dr. C put me on will help a lot but it may take time and wants me to see a rheumatologist (they deal with neuromuscular disorders).
After leaving there I was like why does NOBODY know what is going on with me?
What the hell is going on!?
So the next morning I woke up after taking this pill the night before and was in some crazy trance and led to a horrible 10 minute streaming out of my nose nosebleed.
It was so bad and scary I called Dr. Sheperd...
As we were talking I asked him a lot of new questions that came up after I left his office (typical).
One of the questions was why don't you test me or didn't you test me for fibromyalgia? (By the way the nose bleed supposably meant my apartment was dry... hmmmm...)
He said OH I AM ALMOST 100% SURE YOU HAVE IT. But there is not bloodwork to show it. You just have to have all the symptoms.
Your mom has it. You have all the symptoms. You are tender in all the places fibro patients are and that is why I am sending you to a Dr. (rheumatologist) that deals specifically with those kind of problems...
I THOUGHT... WHAT THE HECK MAN.
He could have let me know this in his office.
So I guess is how this works is the RT will take tons of blood samples to rule out that I don't have anything else going on like
- Amyotrophic lateral sclerosis
- Multiple sclerosis
- Muscular dystrophy
- Myasthenia gravis
- Spinal muscular atrophy
So lets hope not!
So how am I feeling dealing with this?
For now I feel annoyed by this process.
I ask myself what NEXT... And I am left feeling a bit
Blank.
::Giving way to that familiar ill::
