Friday, March 26, 2010

Never give up hope

I know I started this blog as a way of keeping in touch with my mini friends and fully intended to devote all my topics to miniatures.  Between the squirrels and the surgeons (who are sometimes interchangeable) it hasn't always worked out that way.

At first I thought that I was being a downer if I talked about my medical problems but I quickly discovered that I have some truly wonderful mini friends who have been so very, very supportive of me and don't seem to mind if I sometimes wander off topic and talk about some medical issues.  And that led to another surprising discovery.  I wasn't surprised that my mini friends are supportive because I know how wonderfully kind and caring you guys are.  What surprised me was the discovery that I *need* the support.

Yep, big brave me who has looked down the barrel of a gun, lived with two homicidal people who have tried to kill me in the name of love, and survived the sinking of the ship of fools.  Twice.  Honestly, I didn't think that I needed support.  It just never really crossed my mind that it would be of any help.  I thought that it was sweet and wonderful when people are supportive but because I never had that support in my life I had no way of knowing what it *really* means.  Then you guys came along and I learned---really learned---what it means to have people who care and will listen and try to understand.  People who say, "You're doing the right thing" and "Don't give up!"   I can't tell you how much that means to me and what a difference it's made.

Lately I've been surrounded by some doubt and was deeply hurt when someone I care about told me, "Maybe you need to just accept things as they are and quit pushing so hard to find something else that may not even exist."  Gawd, that just cut me to the quick.   I've spent the past two years being my own medical advocate because no one else would do it for me.  The doctors sure aren't willing to accept that role and I've had to fight my way thru all the bullshit and keep after them at every turn to keep looking for something deeper.  I've never given up and said, "Oh, this is just fibro and there's nothing else that would cause it to stay in a constant state of flare".  Nor have I let go of the fact that there's something seriously wrong with my thyroid even tho the doctors say it's "normal" and that they're okay with the biopsy results.  So I've researched and I've gone into the doctor's offices with my list of questions and requests only to be told that they don't know.  Apparently I'm supposed to just quietly walk away with my head down and accept their diagnosis that this quality of life is all I'll ever have without even exploring the possibility that something else is wrong.  I've never put my head down for anything and I'm too old to start that now.  I refuse to accept that this is all I'll ever have and idly sit by as each day gets a little bit worse.  I didn't live thru two homicidal maniacs just to give up on my own body.  There *is* a better way to live and I'll get back there but I can't do it alone.

So after being devastated by that comment (not to mention what it did to my ability to trust the person in whom I've relied on so much), my next appointment with my rheumatologist was something that I had mixed emotions about since I wanted to talk to her about the possible thyroid surgery.   I explained about how much this thing is obstructing my airway and circulation, and how my oxygen sat level was really low when they did the biopsy which got me to wondering if the lack of oxygen in my blood would perpetuate the fibro flare ups. Dr H sat up and said that yes, that could certainly explain a lot if it was below 80% on a regular basis.  More importantly she feels that it's probably interfering with my sleep.  She's always felt that the biggest problem with getting the fibro under control is my insomnia and the poor quality of sleep when I do sleep. She took a good look at my thyroid for the first time and couldn't believe that it hadn't been removed before now with all the nodules, especially when I told her about the one with the microcalcifications in it.  She agreed that's like a ticking time bomb.  When I told here there is a new nodule on the isthmus, she said, "Good god woman, it's no wonder you have problems!  That's the last place you need a nodule. There's only so much space in there to begin with!"   And then she said that if the surgeon has any reservations about removing my thyroid to let her know and she'll call him and push for it based on it's impact on my fibromyalgia.  I was SO thrilled when she said that!  Finally, finally, finally, there is a doctor on my side and ready to help be an advocate if I need it.  I can't even find words to say how much better I felt.

I told her what the person I trusted had said about just accepting things as they are and she gave me a pep talk and finished with, "Don't you ever give up hope." and then she hugged me on the way out.   I really needed that, especially from a doctor.

With my oncology appointment coming up on the 7th, I'm feeling more and more confident that maybe I'll find a solution here.  I don't think I'll find any answers no matter how much I'd like to hear them say that my Grave's symptoms really do have something to do with that "normal" thyroid.   I really can't believe that the thyroid hormone going thru my body is anything near normal.......if not in quantity than certainly in quality.  Any hormone that comes from a tiny gland that consists of more fibrous and fluid waste-filled nodules than healthy tissue just can't be good for me.  However, I don't expect to hear any doctor agree with that and in the grand scheme of things it won't really matter as long as they take it out of me.  If I feel better after it's removed, I'll have my answers.

It's like a roller coaster ride these days and to be honest, I'm getting more and more tired all the time so it's harder than ever to deal with it.  But maybe, just maybe, the light at the end of the tunnel won't be a train this time and something will be done to get my health back under control.  Therefore I'll stand in the middle of the tracks, holding my pathetic little bundle of hope close to my chest and continue to chant, "Never give up.  Never give up.  Never give up." under my breath.

On the lighter side of things, it's been a busy mini week.  The Dixie Manor custom Pierce was picked up by the shipper on Tuesday and she should be snuggled into her custom box and on her way to her new home tomorrow.  I can't wait for the two of them to meet face to face!  Right now I'm working on a design plan for a kick ass Beaumont that I'll be building at the end of the year.  That's a lot of research and experimenting on paper right now but for me that's almost as much fun as the actual building.  I needed to do some physical moving around this week in the middle of a snowstorm that had my body stiffening up so I did my ritual cleaning of the studio after a big build and it looks fabulous.  I cleaned out the closet and moved the plastic storage bins filled with non-minis to the crawlspace under the stairs so I'd have room for my kits.    The entire closet is filled with kits from floor to ceiling but they fit and now I have more workspace in the studio which is always good.

I've also been working on a couple of furniture orders, going back and forth between one masculine, slightly modern house and one very gothic Victorian.  I've had to wait for furniture to arrive so I'm actually alternating between two orders which is unusual for me but it's been fun to bounce between the two.  I'll show you the latest in the more modern house furniture next week when I do the drapes to match the furniture I just finished for it.  Today I have something else to show you.  This bed is named "Spellbound" and I think it suits it well.  The resident of the gothic Victorian is a very sexy witch dressed in black lace so when I designed her bed I wanted to make sure that it reflected not only her power and seductive nature, but also her romantic side as well.  I think this bed might be just right for her.

It's done in black satin and crinkle silk with one blood red silk ribbon rose embroidered on the pillow.  I had to do the vanity bench and the settee to match so that the whole room pulls together.  

One thing that has me all excited about this furniture is that it's going into a Tracy Topps house!  Not only is Tracy a dear friend/little sister but I admire her work so much that it's a real honor for me to be able to dress a house that she's made.  I can't wait to see it in the house!


  1. Deb, it sounds like you have found a gem of a doctor! Good luck with the other ones. And NEVER GIVE UP!!!

  2. Hugs for you Deb! Hang in there!

  3. Good for you Deb! You stand tough and I'm so glad that you now have a doctor on your side. My husband has Graves and had his thyroid removed over a year ago. He is like a new person. Also, I had neck surgery FINALLY after pushing and pushing and pushing my pain doctor to send me to a surgeon. WOW the relief! Even though I still have neck pain (full recovery is more than a month away), my quality of life is so much better. Even my bi-polar disorder is better under control now that I am not in chronic pain. So, get that thyroid out, make then check your para-thyroid glands while they are at it, and you keep pushing. I'm praying for you and cheering too!