Thursday, March 17, 2011

Getting My Bearings

I knew this would happen.

I knew I'd get all stuck in "what could I possibly have to say that anyone would need to hear?" and "this is so awful and messy; I don't want to whine publicly about this"...or even "I'll share this when I get it all worked out".

Remember those nasty Heffalumps and Woozles in Winnie the Pooh's nightmare, creeping about and waltzing in Pooh's sticky honey?
That's how I feel right now....Trudging through thick stickiness, unable to get it right, unable to drag my hands up to the keyboard to share.
And by the way, that little scene always scared the dickens out of me!

I forget that there must be others out there in similar situations, those who might need even the tiny amount of encouragement that I can give them.

So folks, here I am, back again to whine some more.
I DO have some wonderfully amazing resources to share, as well as some delicious recipes, and my plan is to design this blog so that all are easily accessed. I've added those pages, but I'm still working on adding links. Please bear with me.

Lately this has not been much of the grand adventure I try to see it as.... having my allergist (after "conferring with his colleagues") suggest that I lay off all bean/legume products (WHAT??!! Whatever will I live on??) He then suggested I use Beano if I insisted on eating beans. Beano contains GLUTEN, which causes serious problems for me. AND he suggested I avoid all gelatin products (well there go all the supplements that keep this body running)!!

I can't help but feel that it was pretty darned irresponsible for him to tell me such a thing with no testing to back it up....Seriously, what am I going to eat?? How am I going to get what my body needs to exist if I give up all of my supplements, since it's obviously not getting enough of what it needs from foods??

Sure, I know that supplements are available in vegi-caps, but they are expensive, and I have a cupboard full of my regular supply. I suppose I could empty the gelatin capsules into vegi-caps, but gee whiz, don't I have enough to do trying to survive?!

I've been off my supplements since Sunday, and man, oh man, do I feel rough!
I'm aching all over, feeling weak, not sleeping well, not able to wake up and get moving in the morning *SIGH*
I did wake up to a gurgling gut this morning after eating lots of peanuts yesterday, and my favorite snack last night--- natural peanut butter and raw local honey with sunflower and pumpkin seeds (YUM).
I'm back on my supplements this morning, but avoiding all manner of peanuts  *tear rolling slowly down my cheek*

And in other news, I discovered that when I went in for my "esophageal biopsy", my gastroenterologist, in his zeal to prove me "wrong" and by not bothering to confer with my allergist, biopsied my duodenum instead!!!
Can you believe that?!
The allergist is asking for the original test he'd requested, but I'm thinking I probably need to find another gastroenterologist! Really....wouldn't YOU?
I'm thinking I don't really want that guy back inside my gut....

The good news--- I do not have celiac disease.
That's great, but guess what? I STILL can't consume gluten.
And I STILL don't know why my esophagus spasms painfully, sometimes when I swallow WATER.

Is it any wonder that I am discouraged?
I feel that none of these doctors are really interested in helping me at all.
Because I'm on disability, I have Medicaid for insurance (pfft...what a joke!). Doctors know they aren't going to get paid diddly-squat from Medicaid for their services, so they don't work too very hard to help.
I almost wish that I could just be checked into a teaching hospital with a team of doctors who want to figure me out in order to help others (my kingdom for a House!)

I'm going to wait patiently here today to hear from a doctor's office who is trying to find another gastroenterologist for me, and from another who should have some very interesting lab results for me.
At that point, I will share some bizarre information (and links) with you.

As always, thanks for listening to me BELLYACHE, and thanks for the love and support I feel from all of you!


  1. Jen, my gosh, to not be respected by those that are supposed to be helping! Frustrating is just not strong enough a word, but you know, I don't want to start sounding like a sailor on your blog. LOL!

    so what flashed in front of me as i was reading this, patch adams, you need a patch adams! he'll care, he'll make sure you are heard. i had to google 'funny doctor played by robin williams' because i couldn't remember his name. he's even better than the movie! seriously, you so deserve some love around all this!

    sending you hugs, love, and a smile!

  2. Oh Tracy!
    You don't know the half of it!
    I cleaned it up quite a bit to be able to post it publicly!

    I've hardly been heard at all by anyone in "healthcare" since I began my quest for a diagnosis in my early 20's. Actually I can only name ONE doctor who listened to all of it, and he's the one who finally got my lupus diagnosis (after 18 years of searching!).

    If Patch Adams is still around and seeing patients, I'm all for finding him! :D

    Thanks for the love!