quick update.

things are looking up since my last post. my stomach and body still are acting up, but my attitude has gotten a lot better about it. even though i feel miserable, i try to not let it show and as much as i mocked the theory of "just pretend you're feeling good and not hurting" sometimes it lets me forget about not feeling so good/hurting. there are some good days, and some less-than-good days, but i'm getting through them.

now, i'm just waiting for the endocrinologist appt on the wednesday (!)

Discouraged.

An update with some gory details.


Pretty much since Friday night I've been going downhill. I long for the days where I just didn't go to the bathroom at all. Starting Saturday I've been in and out of the bathroom with stomach cramps and the whole deal. Last night was the worst, every two hours the stomach cramps would wake me up. Finally around 4 or 5am I was able to just solidly sleep. I knew I must have been tired, because I didn't even hear or wake up for Colin going to work. My body hurts, just like all my muscles are so sore. Luckily, no body aches (like the flu) just soreness. I still have some appetite, but knowing what happens after I eat has prevented me from eating much at all.

It's put a pretty big damper on my attitude. I had to cancel plans today. For this last two weeks the main thing that's kept me going is knowing I get to see my family in California for Christmas. I was so excited and counting down the days until we left. And now with everything flarring up it's totally made me dread having to drive down there. Being in the car for ten hours is so hard on my body.

I'm tired of having days ruined. I don't want to sit (rather lay) on the couch another day. I want to be outside, interacting with other people and leading my life like a normal person, rather than planning everything around this.

So today, is not such a good day. In case it didn't come across already to you, I'm feeling pretty depressed and discouraged.

Referral

Well, I called the Portland Diabetes & Endocrinology Center and made an appointment. There's nothing on their website that says anything about Cushing's (Unlike on the OHSU page) but, at least it's a start. Maybe they'll at least have better access to information than my GP.

Referral

I called Dr. S and told her I'd feel more comfortable if an endocrinologist took it from here. Dr. S' assistant called me back today and told me I should call, "portland diabetes and endocrinology center" and gave me the number.

They have a website here, http://www.pdec.org/index.html

Nothing on their website about Cushing's. But, I'll call tomorrow after Colin's surgery (wisdom teeth) to try to make an appointment.

Update.

I got a call back from Dr. S' Medical Assistant, who (not surprisingly) doesn't know what's going on. I know that if I want anything from Dr. S it means making an appointment, and paying another co-pay. I called and left a message for an endocrinologist that is covered under my insurance. No call back yet, but I know they can get sort of swamped. I'll wait till next week and call again. Plus, Colin got the news he needs all 4 wisdom teeth pulled. Our insurance is covering around 80% of it. But it still leaves a big chunk to come out of our empty looking bank account. I hate that most of the time I feel like a giant draining resource to everyone around me. I am grateful to everyone who helps me out, but I hate having to be the person that others have to help out.

Today I thought about how if it's this hard to get answers for someone who has decent insurance, if I stopped having insurance, then what? I guess you just slip through the cracks of America's healthcare system.

There are times like today that I wished my doctor just hadn't said anything. Yes, I am grateful that someone pointed out to me my symptoms align (a little too closely) with a serious disease. But, it's like being blindfolded and handed a puzzle. How are you supposed to put it together if you don't have the right medical knowledge to see what you are looking at?