Tuesday, October 19, 2010

Why a blog?

I really don't know! well I know  I want to reach as many people as I can who have a thyroid issue and just don't know where to turn. I'm just one person who went through my own hell(as we all have). But I feel the need to be heard, you never know if my words will help someone else.
I've got to tell you blogging, web pages, just trying to reach as many people as you can, besides the chat rooms for any topic. It's a full time job! The blog is not going great at this time but I hope it will get read. And on a semi daily basis when I post something new, I want you to see the twilight zone that many of us live in. All of us deal with it differently and it affects us all differently, but it still sucks!
The book I've written about my personal experience keeps getting re written(sort of), so the publisher and I go back and forth.It's nothing bad, just want it to go big to reach many people. So the book, the blog, and my web page.
Still so very tired all the time! If your here at the site you know how I feel! but I keep going! I miss my body and how I used to feel. That is now a distant memory and I'll never get over that. Life goes on and it's different now, but it really sucks! what choice do I have?
Suzanne

Saturday, October 16, 2010

What the F***

Today I woke up, and feel like I never went to sleep! it happens quite often. And I'm exhausted without even doing anything. It's Saturday and I ran some errands and I cannot tell you how tired I am. I don't feel like going to see family or friends and say hey! I can't describe how brutal the chronic fatigue is. It's with me all the time! some days are better than others. And today I'm extra numb and tingly on my right side(due to low calcium because of the surgery). And I'm so cold intolerant (part of the disease), the thought of going outside is not fun,(very cold and windy today). I should be out doing my thing on Sat mornings (like I used to). Beat up before I start my day(sort of). No energy ever!

My Brother once said to me don't let this consume you!  It does consume me! My life is not the same anymore! just because I look fine, doesn't mean I am! Every day I get up and fight! jeckle and hyde inside, fatgue, tired, numb, worn, aches in the joints and muscles......It doesn't go away! and there's so much more! I can't have a normal day because I have to always over compensate for how i feel. DON'T LET IT COMSUME ME??????????

Anyone who is at my blog will understand! we live differently than others! how to live through it is the hardest part.
The only tip I have for you is keep fighting!
Suzanne

Friday, October 15, 2010

You never get used to it!

Today I just want to crawl under a rock and stay there. I'm soooooooooo tired! the  fatigue never goes away. It doesn't seem real, but it is! I surround myself with things to do and try to feed off of other people's energy. But it doesn't work! I'm mentally and physically exhausted.
My body is breaking down on me, and it's prety damn defeating!!!! as anyone knows with a life altering health issue. Mine isn't going away, I have this disease for the rest of my life.
I was fine before surgery! had they not damaged my parathyroids, I wouldn't be in this boat. That still blows my mind!

Tip: one day at a time! we have no choice. Just keep plugging away, and never stop looking for answers to feel better. Drs aren't always right!

Tuesday, October 12, 2010

It never stops!!! Here's another tip!!!

They cancelled my insurance and didn't notify me! This was back in July( I only found out because i had a Drs appointment in Boston in August). I Couldn't go, I had to straighten this out. I filled out the application form wrong so I was told. They deemed it incomplete!!!! thus cancelled. Do you want to know what I did? I left the questions blank that didn't apply to me(what the ****). So I had to reapply all over again. This time where I left the questions blank, I put NA! and I over nighted my app so they would have it in their office.
 Well..................28 days later from the day they received my app, still nothing!!! they told me 21 days.....I called, and my insurance is still cancelled! Do you know what I did wrong this time? I wasn't supposed to put NA!!! I kid you not these questions didn't apply to me(why would I answer them?)

TIP!!! If it's a yes or no question, check the NO box, even if it doesn't apply to you.

It's now going on my third month without insurance because of the mix up(but no notification! god forbid!). And I couldn't miss this Dr appt. in Boston again. The billing without insurance was $700.00 (the Dr was $230.00 for 20 minutes.  And it's not from lack of trying on my part! I've called and did what was asked! and look where it got me! Where i stand now? I got the ok to call another office, and they will now be able to look at my app and decide if I get to have my insurance back!!!! So I still don't have insurance!
Welcome to my world! The twilight zone!
God!......... if you have learned anything to help someone else regarding thyroid/medical issues. please leave a tip for them!

Monday, October 11, 2010

My Twilight zone!!!!!!

Welcome to anyone who reads this,

In 2008 I had a total Thyroidectomy(removal of the thyroid gland in your neck, everyone has one). Since the surgery my life has not been the same(and not for the better). They damaged my parathyroid glands(risk or not) and have left me with an uphill battle. It's been two years and seven months since surgery (but who's counting).The aftermath has been horrible! Dr after Dr, test after test, hurry up and wait. The calcium and thyroid levels never being on the same page so you never feel like yourself. What your body goes through after a total thyroidectomy is brutal! I really don't think that the Drs really  prepare you for this. I don't really know what they would say, but I know what they didn't say to me.How much your life changes after is mind blowing! and we have no control over our bodies to make them feel better. And for once it's not about your attitude!
 Funny when this all started I took to my computer and started typing my heart out to try to make sense of this whole thing. Why I wasn't feeling any better ever. two months, four or six months....and beyond. How I never found any sense of normalcy after the surgery, ever! I'll spare you the details at this time. I have written a book about my whole ordeal and it awaits the publishers approval......so I'll keep you posted on the arrival date, I'm hoping by Christmas.
Why a blog???? I'm talking about thyroid issues only(specifically Thyroidectomys). When we live with a thyroid disease(it's an auto immune disease). It's chronic and we live with it, and it affects people in many different ways.This is my way of sharing what I have gone through, and still am, but have just gotten used to it. You never get used to it, but you don't have a choice.I've been forced to find a home in the twilight zone where nothing seems real, oh but it is........as we all know!
This blog is for people to leave a tip! something they learned through experience that might help others! no story just a few sentences. If your at this blog you have a thyroid issue, so you will understand the tips left. if your at this blog and no thyroid issue (because someone said hey check this out), you won't understand the tips left(ask your friends who have the disease, they will explain it).
I'm Hoping this will get bigger as time goes on so it will help others!
So leave a tip!

1.Citracal absorbs better into your system without food.
2.You do pee out most of your calcium if your body doesn't absorb it(took me 5 thyroid Drs to find that out).
3.The Calcium calcifys and makes your stool hard as rocks all the time....use a stool softener, and have some laxatives ready for the constipation that happens too.
4.It's not about an anti depressant! we are depressed because of FRUSTRATION!