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!

Tuesday, March 9, 2010

A Completed Dollhouse and a Good Surgeon

Not that the two of them go together, but in my world maybe they do.  Both are good news!!  Let the happy dancing begin (if you can't find a partner use a wooden chair).  The Dixie Manor Bed and Breakfast Pierce is all done clear down to teeny hyacinth growing under the lilac bush.  Oh, and she's such a beauty too!  She's as delicate and feminine as can be and the colors are soft as a spring night in the south.

Isn't she gorgeous?  I can say that because the owner of this house has worked with me thru every little step and she's the one who selected the delightful wallpapers.  I think we made a helluva team!

There are LOTS more pictures of Dixie Manor on my website on this page.    I took so many pictures that I had to use thumbnails to get them all in one place!  Please drop in so you can see all the details of this sweetheart.  I mean, we're talking about eye candy that is almost as good as chocolate.   It's pretty any time of year but I think that finishing this one right on the cusp of spring is perfect timing.

I mentioned that there is good news about a surgeon too.  I need to backtrack so you get the full story.  It started with a real asshole of an internist a couple of weeks ago.  Jerk.  He's the one I was referred to because the other internist couldn't figure out what else to do.  Anyway, Dr Jerk copped an attitude right off the bat and acted like he thought I was just a pain in the butt and nothing was wrong with me.  I'm not going to go into all the details but he literally made me feel as if I'd been beaten up.  He wouldn't even consider looking at what's wrong with me because he got stuck on the new medical mantra:   "You're just depressed".

 I sort of lost it coz I've heard this one too many times from doctors and pointed out that I have situational depression, not clinical.  I'm depressed because I'm in chronic pain and exhaustion.  I suggested that we focus on fixing whatever is wrong with me coz if I feel better I won't have any reason to be depressed. 

Gawd, you'd think I'd called his mother a streetwalker or something!  He got all pissy about that and snapped that he isn't ruling out clinical depression.  Whatever.  I told him that's all a moot point since I can't take anti-depressants.  I have some reeeeeeeeeeeeeeeeally adverse reactions to both tricyclics and SNRI's.  It's much worse with the SNRI's.  In fact, I'd even typed up a list of the sleep medications that they've tried me on and the reactions I've had to each one.  (for some reason antidepressants are the new sleep meds, especially for fibromyalgia patients)  Anyway, he looked at it and I quote, "I don't understand some of these reactions to the SNRIs.  Let me give you the name of a neurologist to see about that".  But, even tho he admitted that he didn't understand it and even after our debate of about 15 minutes where I came *very* close to raising my voice about why I will NOT take any more anti-depressants, he suddenly switched tactics and said that there is a new medication for fibromyalgia that I might want to try.  I'd heard about Savella and he said I could take it with my Lyrica and Tramadol so I said I'd give it a try.  He gave me an office sample for two weeks and I stuck it in my purse.

I started taking it that night and almost immediately I was nauseous and having strong stomach pains.  By the second dose both were worse, my mouth tasted like I'd been sucking on a tin can and all the muscles in the back of my neck were rock hard.  On the morning of the third day, my stomach and esophagus felt like they were petrified, I had a raging headache and had been bedridden for two days.  My hands were shaking and my nervous system felt like it was shorting out.  I figured I'd given it my best try (Dr Jerk told me to suck it up and try to get thru the initial side effects because they would get better) but enough was enough and I tossed them in the bucket of used kitty litter.

Out of curiosity, I went to and checked the drug interaction with the meds that I'm already on.  Yep, sure enough, not only is Savella an SNRI but there was a HUGE red exclamation mark saying that  it has serious interactions with Tramadol and can lead to siezures and coma.    When I go back for my follow up with Dr Jerk I'm going to take along a baseball bat and whack him in the kneecaps.  From now on when I say "No anti-depressants", there will be no room for argument.   And I think he's an incompetent twit on top of being a jerk for prescribing something without checking for interactions with my existing meds.

I brought up my thyroid symptoms and he immediately shut me down saying that all my thyroid blood tests are normal, therefore I cannot possibly have any symptoms of Grave's Disease.  Wanna bet???  Ask any Grave's patient and they'll tell you that those numbers don't mean doodlysquat.  The symptoms not only continue but are even more horrible when the numbers are "normal" because we aren't getting any treatment at all.  I had already pointed out that my blood pressure was 165/90 when the nurse took it and that my pulse never drops below 90bpm.  He ignored me twice and was going to continue to ignore me until my husband pushed about it.  (Dr Jerk said my heart monitor test results were all "normal" and couldn't explain how 90+ bpm is normal).   But after hubby pushed, Dr Jerk took my BP again and saw for himself how high it was.  I guess maybe he thought I was bribing the nurse to falsify it on my records before he came into the room or something.  Anyway, he finally acknowledged that there might be a slight problem with my heart rate and BP.   I asked what would be causing it and he said, "That would by your thyroid proble...........Oh wait.    No, your thyroid numbers are normal so it's not that".  Damn, almost caught him on that one.  He cleared his throat and condescendingly said that he would prescribe a med to lower both.  I said, "Beta blockers, right?".  His head snapped around and he asked, "How do you know that?  Have you been on them before?".  I sweetly replied, "No, but my first endocrinologist discussed them with me as a possibility if the Tapazole didn't work after I had my thyroid storm".    He had that one coming.

Then I brought up the nodules in my thyroid and said that I wasn't comfortable with the benign diagnosis from the biopsy since the microcalcifications are almost always found in cancerous thyroid nodules. He said and I quote, "Well, if the biopsy was benign, I'm okay with that."   I think I literally snarled at him.  He might be okay with it, but I'm the one with a time bomb in my throat!  However, he was already getting out his directory and writing down the name and number of a throat surgeon he wanted me to call.

I'm just now getting back to normal after the savella/tramadol interaction so I haven't called the surgeon's office till today.  I got an appointment for April 7th (the earliest they have).  I got a bit of a surprise when I asked the recep for directions to his office.  She said that if we use the valet parking all I have to do is turn to my left and I'll see the sign on the building for "Cancer Care Center".  Um...........okay.  She caught the surprise in my voice and asked if I had been told I was seeing an oncologist.  Not exactly but it's something of a pleasant surprise nonetheless.

And that's where we are now.  It's good news that even tho Dr Jerk is okay with my thyroid, he's still getting me in to see an oncologist specializing in cancers of the throat.  That's where I ultimately need to be. And the beta blockers are working so my blood pressure and pulse are back out of the red and close to normal again.  I'm willing to bet that once they take out my thyroid, I'm going to feel a lot better.  I know it won't help some of the other issues I have but at the very least I'll get rid of the airway obstruction and get more oxygen into my muscles which will help the fibro.  No matter what the doctors say, I also know that it's going to make all those symptoms of Graves go away.  I can live with being euthyroid a lot better than I can with untreated Graves.  Most of all it will get this nasty, toxic mess off my throat chakra and out of my body where I'm certain it has been slowly poisoning me.

I'm making a list.  If the oncologist and pathologist say the nodule is malignant I'm going to go to every single doctor who said that I couldn't possibly have thyroid issues and whack them in the kneecaps with that ball bat.  I thought I'd invite all my friends to go along and we'll make a party out of it.  Casual dress is fine for a knee-whackin' party.  I'll bake the cookies and brownies if y'all will pass the hat to throw my bail.