Monday, February 9, 2009

Still peeing in a jug...

Not literally in the jug- I have to pee in a bucket, and then pour it into the jug. Even better! I started this one yesterday morning, and I'm about to finish it. Then I'll be taking the jug to the Mayo Clinic to drop it off, and then get some blood work done. I've been fasting since 8pm, and I'm hungry :(

I said I'd write about some of the "feelings" I'm having with all of this. That's harder than I thought it would be. I'm pissed off really, but I don't know why, or at what. I feel like doctors can't be trusted now, and I want to be able to trust a doctor. My health is in their hands. I have no control over my own health care, and that drives me absolutely nuts. And what's funny about it, is that I've been dealing with this kind of thing for years. This isn't the first time by any means that a doctor has given me bad information, a wrong diagnosis, or completely overlooked what was going on with me. I've believed them before- I've stopped seeing doctors and tried to "suck it up" and be stronger, merely because enough doctors had told me I'm normal, or "everything looks perfectly fine". But this time, I feel crushed. Probably because I was so extremely happy that a doctor had finally listened to me, did some tests, actually FOUND something wrong with me (abnormal test results PLUS a tumor in my brain) and had a plan for what to do for me. He seemed like he even cared that I get better, or was concerned that I'd been shuffled from doctor to doctor never finding anything that would cause my symptoms. He back-pedaled for my previous doctor once; he told me that the Cushing's symptoms are very similar to Hashimoto's symptoms and this is why it was so difficult to find with me, or overlooked completely. They thought they had found the "culprit"...BUT when we found the Hashimoto's, I was told it was sub-clinical still and we could do nothing about it. (It's still that way, and this most recent endocrinologist confirmed that my thyroid gland "feels" Hashimoto-ish, and that it's slightly enlarged, and that the antibodies absolutely point to Hashimoto's...but my gland is still functioning properly. Apparently, I have Hashimoto's but my thyroid is a stubborn old girl, and she's still producing those hormones like a champion. However, with this disease, it's only a matter of time before my body kills that little thyroid and I'll be on medication for the rest of my life). So now, I'm back to square one...and I thought I had an answer, or a doctor who would at least help me. Now, I'm left feeling like that doctor was a complete moron- like I shouldn't believe a word he said because his testing protocol was worthless...and the labwork he felt was abnormal, wasn't abnormal "enough". Who do I believe? Little voices in my head tell me to believe the Mayo Clinic doctors because 1) there's a team of them and they both ganged up on the old doc...or they both just feel that he was incompetent or somehow misguided and 2) everyone builds up the Mayo Clinic like it's full of these doctor geniuses and every single person there should be listened to with sheer amazement at their wonder. "Take notes you little patients, these doctors will change your life"...these little voices are slightly alarming, but realistic if you ask most people.

Then there's Dr. Friedman in California. He's a specialist in "Cyclical Cushing's" and he apparently has a very holistic approach to that disease, or to finding whatever ailment is lurking. I like that, and I especially like that he focuses on a disease that is so incredibly rare, that most doctors actually come right out and say that they won't even be discussing it, or thinking about it, or testing for it. They teach doctors in medical school, before they've actually become the "gods" that a lot of people make them out to be, that they should think horses, not zebras (aka, it is far more likely that the patient has plain old variety Cushing's, so make sure all other avenues are exhausted before testing for an extremely rare disease). I get that, but I also feel that a lot of extremely rare diseases could go extremely undiagnosed in that setting. For instance, say someone has an extremely rare form of....oh, let's say "Cushing's Disease"...and they also have this fairly common disease by the name of Hashimoto's. Well, the symptoms are similar in both, but the shining, beautiful horse in the picture is the Hashimoto's. So, wonderful patient, you're Cured! You have Hashimoto's! (The reason as to why we can't treat it- and why it technically shouldn't cause these symptoms- is unimportant, because we found a horse to diagnose you with. No run along garden variety horse, you're all set). Anyway, Dr. Friedman seems like a good person to go to who would look outside of this horse box, and maybe find me an answer. But he comes with quite a few dilemmas: 1) California, I've done surgery in CA and flown back out to AZ more than once in my lifetime, and it sucks. I actually told myself I wouldn't do it again. But I can work around that hurdle. 2) He doesn't accept insurance. I know, sounds sketchy. But he has a huge following apparently, so he doesn't "need" to accept insurance. So it'd be wicked expensive...haven't decided if I can muster the strength to get over that hurdle. And 3) he doesn't do testing on anyone who's been on birth control in the last three months or so. I would need to go back on Lupron, against three other doctors orders, to go and get tested by him (and pay a lofty sum, and fly to California...). Three rather large dilemmas. I'm still thinking about it.

Now, I really don't want to have Cushing's disease. I don't want to have a brain tumor either...especially not after the one and only neurosurgeon I've seen, who hails from the all mighty Mayo Clinic, told me that basically a monkey could do as good of a job as him because that's the nature of this surgery. A lot of digging around, some scooping of "tumor tissue", and sending it off to the lab to see if he guessed right as to where this little tumor is chilling out. I don't want any of that. I was a horse, that's easy to treat and ready to graze. But I've gotten the horse diagnosis before, and it did sh*t for me then. So why wait for another one? Maybe I'm a zebra. Maybe I'm one of the unlucky ones. But as far as I'm concerned...any answer would be a lucky one at this point.


judycolby said...

Here I go again. Really, I'm not trying to push you into going to Dr. F, although it would be a good choice. But I'll tell you more about it - you pay his fee the night you have your appointment. You can then submit to your insurance and see if they will pay some. All of your testing can be done at home with your insurance. Our insurance paid what testing was done in LA but others have done no testing out there when their ins. wouldn't cover it. As for surgery, Dr. F lets you choose your own, we went to MDA in Houston. If you want to contact me direct you can send me an email from my profile page on the board.
And really I'm not trying to push you to LA, it's just that you can get results there and be on the way to getting this behind you.
Yes, it can be expensive but worth it.
As for Mayo,I've heard of very few Cushies who have had luck at any Mayo clinic, I think they rely heavily on tests that really don't definitely prove anything.

My Endo Journey said...

I work in the healthcare industry, and, it really is a frustrating place. There are so many hoops and jumps and processes. Most there to protect us, but, sometimes you need a little heart in treatment. You need someone to believe in you and fight for you. Unfortunately, most of the time that is ourselves.

I am so sorry that you are going through such a frustrating time. I hope that there will be answers soon...more definitive ones!

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