Diagnosed!

So, after 7 long years, I was finally given a name to all my "issues". And really it was only by chance. I stayed away from the doctors office all year until September 2nd because, truthfully, I was sick of hearing that I was normal, just overly sensitive. All the specialists wanted to do was put me on anti-depressants. I KNEW that was not going to help me. But this summer, my hair started falling out in large amounts. I put up with it for 2 months, but when my volume was decreased by a third, I decided it was time to see if there was some sort of malabsorption or deficiency. I can only handle 4 food items at the moment so I figured that was the case. My doctors answer was it may be hereditary or it may be a side effect of my low dose birth control(which I use for hormonal balance). I really, really hated hearing that. But in passing, I mentioned a full back rash that doesn't respond to cortisone creams(or anything else for that matter). I normally wouldn't mention rashes because I literally have them all the time. It's just me....the itching queen! ;)

But I had noticed that the rash gets worse when i would cheat & eat some fruit blended up in my smoothie. I just had a feeling I should mention it. My doctor asked how long it's been there. Well, FULL back...for 7 months. He typed away at his computer & asked if I'd be willing to get a punch biopsy. Well, sure, as long as I'm not made to get another colonoscopy or a giant tube down my nose into my throat(AWAKE!) then I'm game. I had to wait a week....then got a chunk taken out from behind my armpit(which with novocaine was painless even with stitches). 

Waiting is the hardest but honestly I've gotten so many tests done that come back normal...I had no hopes for any kind of answer. 

I got one though........

Systemic Mastocytosis!

I was teary leaving the office...I didn't really know how to feel, finally having a name after 7 years, but not really liking the name I heard. It's rare, which means scientists & pharmaceutical companies aren't doing the kinds of research they are for other more well known conditions. Which means not alot of options in treatment & no competitive pricing. My pharmacy called & said they weren't ordering it unless I'm okay with the $700 price tag for a 24 day supply. 

Yeah...NOPE!

So back to the drawing board....but this time with a clear direction.

Crazy thing is....I've prayed for answers each time I had tests done, but this time, literally, cried out to God, wanting to know if I was WORTH an answer. It was a feeling of helplessness, wondering if my journey was even meant to end while im still here on earth. I feel thankful & blessed it was THIS time that I got His answer. I AM worth an answer! I know nothing is easy, and I have benefited spiritually from my trials.

I'm blessed & happy I can keep my smile on my face, knowing there is someone watching over me & my struggles.

What being an Introvert means to me....

Most people see me as antisocial. I have been called snobby, judgemental, old fashioned,etc. I do not hate being around people. Yes....I'm guilty of being a coffee SNOB(Starbucks , please....Dunkin can suck it!). And I probably am a tad judgemental, but I think we all are to some extent. Old fashioned is a term used for me because of my Christian values....So I'm okay with that one. 

What I really am is introverted. 

Personally....there's way too much drama when it comes to "hanging out" with people. I prefer as little drama as possible from outside sources, cuz I have alot handed to me from within my own family. I also think that introversion(is that even a word?! if not....you get what I'm saying, right?) can change in intensity when our lives around us change. I always kept to myself & was most comfortable, as a kid, when I was alone or with my dogs. Then when I had kids, I was able to be a bit more social, for their sakes. Then about 7 years ago, when I got sick, I NEEDED to stay close to home most of the time. 

Let's get this straight....I don't LOVE being introverted. It's lonely most of the time. I've lost most of my friends BECAUSE of it & the lack of understanding people have for someone like me. Don't get me wrong....I KNOW I'm not a bad friend. I'll give all of myself & help whenever I'm needed. I won't however ASK for help in return, so I think that is a turn off to some people.
My hubby is an extrovert...he thrives on being around other people. This fact leads us to live separate lives. I see the girls that he sometimes hangs out with and it makes me sad & a little self conscious that maybe he would prefer I were like them & not like me.
I don't want to turn people off, but because I'm a bit misunderstood, that's what happens. If I could, I would choose to be less of an Introvert.
But for the time being I will retreat into my world of books and sewing machines.
Come join me, if you're brave!  ;)