Health update

[elements]

I keep holding off on making an update cos I keep wanting to have some Actual Information to share, but enough people have been asking, and knowing that it's going to be the first thing people want to know has made me hold off posting about *anything*, and that's just getting ridiculous

Comments

[primroseburrows]

Be ready to fight for what you need when dealing with the medical establishment. You are the expert on your body and its symptoms.

I second and third this. And don't assume you're being dealt with honestly.

When I first go to a doc, for myself or my family, I never tell him or her I know anything about the medical field, because then I can tell if I'm being fed a line. Most docs are okay, but every once in a while I find one who isn't. It's not that they're evil, they just don't want to give up control.

[elements]

Isn't it nuts? I've finally found a PCP who actually likes it that I've researched enough to know what I'm talking about, instead of finding it suspicious and thinking that knowing things means I'm making up symptoms.

[primroseburrows]

I'm changing docs in January when I get my Blue Cross back because I don't like the NP who replaced my NP. This new guy is an MD and a naturopath. My daughter's been seeing him for a while now and says he isn't bad. *crosses fingers*

I think there are still PCPs out there who are the real deal. This is not the case with OB/GYNs, unfortunately. I've met exactly one in my entire life who actually treats birth as a natural process.

[elements]

Wow, I would hate it if my mom came along to my doc appts. She is hypochondriac and all, but she let me go on my own even as a teen, so long as the doc and I promised to loop her in if anything odd was discovered. I got a lot of my medical fighting skill from my mom, but also had to overcome her trust of doctors, too. She'll fight to get something looked at, but she doesn't like questioning doctors, and I had to learn to get past that - it feels rude! :)

My mom just gave me a book, The Thyroid Sourcebook for Women, by M. Sara Rosenthal, that looks like a good handy reference. And there is LOTS to be learned online.

[imaginarycircus]

*squash

[elements]

I have the same issues - it's why I was so happy that Marino has a whole looong intake questionnaire so that they actually encourage you telling your full personal and family history. (It's somewhat frustrating that my former Marino PCP, who moved to Chicago over the summer, never consulted with my current Marino PCP, who is also the Medical Director, and a thyroid expert. But she thought she was doing right by sending me to the endo, so, I don't blame Marino

[imaginarycircus]

Are you with McCaffrey now? And were you with Parekh? Because if so LOL same doctors at Marino! I prefer McCaffrey so so much.

I took an ambien and that ensured I stayed asleep, or when I was woken up I went back to sleep. I think I did lose the oximeter once. And they guy came in and put the damn sleep apnea mask on me, which was uncomfortable. I had NO REM sleep at all because of the apnea. I had one episode a minute for 100 minutes straight and they came in and put the mask on me. EEK! Sadly the bloody CPAP doesn't work for me. I know people who love it and it has changed their lives.

I totally understand about wanting them to just take your thyroid out and hoping that will fix the problem so you can get your life back.

[elements]

I just got back my full results and I never did hit REM in the study. It also looks like I was right that I slept for less than 3 hours, too. They did observe some apnea but without REM they didn't observe anything severe enough for a CPAP, so I will be getting a second study.

Why didn't the CPAP work for you? I found the first 3 ones the tech tried on me (pre-fitting before starting the study) very uncomfortable, and the fourth was pretty decent, so did they maybe try a bad-for-you type of CPAP?

The more I think about things, the more I am suspecting that a CPAP could be helpful - hoping, anyway.

[gwendolyngrace]

Hey, it's good to hear from you!

Sorry you're having so many problems, OMG. As someone about to enter the jobless workforce, I readily sympathize.

Hope they figure out what to do for you soon. Stay proactive!

[elements]

Sorry to hear you're dealing with unemployment too. Fun for the whole family! I had two friends get laid off last week. It's at least nice this time knowing without a doubt that this is so much bigger than any of us, not something we can blame on ourselves.

[bookshop]

I'm frustrated as hell that if my first doctor had listened to me from the start, I could have had this much information a year and a half ago. Of course, since she refused for two months even to test my thyroid hormone levels, and then refused to give me medicine even though my levels were not in the normal range, I know now that I shouldn't have expected much from her. She was also the doctor who told my then-employer that I was malingering, which didn't help me any.

my rage is inexpressible. i'm so glad that it looks like you're finally maybe almost able to see the clearing at the end of the woods, but holy crap, Erica. :( *fierce hugs*

[elements]

My friend Amy wanted me to sue that doctor. I think when I am done with all this and truly know what's up with everything, I will write her a polite note detailing all the ways she was dead wrong and the consequences it had on my life. And I may copy her medical director. I don't want her to be punished, but I do want her to learn from her mistakes with me.