I leave most doctor appointments feeling pretty frustrated, as if I’ve gotten nowhere and am starting over — all over again. Having an undiagnosed autoimmune disease means bouncing from doctor to doctor, telling my story over and over, and usually receiving a response something like, “Well, shucks, you’ve got a lot of symptoms, but fucked if I know what’s wrong! Also, all of your blood work is normal. You’re normal. Yay!” I try not to blame the doctors, but really — they’re doctors. They’re supposed to know, dammit!
I’m also always very hesitant to admit when I’m depressed. It’s easier to write about it here than it is to say the words out loud while looking someone directly in the eye.
But today — well, okay, technically it is now past 12am Saturday so this all happened yesterday — I shoved all of those fears aside and went to see Pam, my PA. And you know what? It wasn’t bad. At all.
Pam asked what I was there for, and I right away admitted that I’m having a hard time with my depression, and that things weren’t going too well with my rheumatologist. When I explained to her how I’ve been running through cycles — wanting to kill yourself one night and then being high on life the next two days is so not normal — she immediately agreed that I need to be tested for bipolar disorder and drew up a plan of action.
“I’d rather start you on medication used to treat bipolar disorder right away so that we can see if it works,” she said. We then discussed a few psychologists and a pain management specialist that she really likes, and narrowed it down to psychologist Dr. M and pain therapist Dr. P. We also decided that I would try Seroquel, a medication used to treat bipolar disorder. She explained that she has people start with 50mg for three days, then 100mg for three days, then 150mg for three days, then 200mg for three days, and so on, and that I would start to notice the effects within a couple of days. She also explained that people with bipolar disorder don’t normally respond to regular depression medication — or that it does odd things to them — which would explain why Zoloft basically made me a zombie and why Cymbalta made me hyper as a kangaroo on crack. She gave me samples of the Seroquel so that I wouldn’t have to pay for several different prescriptions, and said that she would see me back in two weeks to check on how the meds are working (and to call her in the meantime if anything comes up). I’m to call Dr. M before I contact Dr. P and am to start seeing Dr. M as soon as I can get in.
Then we moved on to my mystery autoimmune disease.
I told her that my aunt has Crohn’s, which I had apparently forgotten to tell her before. I also told her about the weird thing with my hands (I sometimes get little “spots” that are sensitive to the touch, as if I’ve been burnt or scraped, but there is nothing there). She confirmed my suspicions; this is another classic autoimmune symptom. She said that autoimmune diseases can attack the skin cells, so that is why I have that sensation. I’ve had this since childhood but never thought anything of it; I thought it was normal up until a week or so ago, when my hands were pretty much covered in these little invisible spots and I couldn’t let anything touch them because it fucking hurt.
We discussed me getting a colonoscopy to test for Crohn’s, and she said that she would contact my rheumatologist for his reports to see if he had any thoughts as to which autoimmune disease it could be before sending me to a gastroentologist. The last report he sent her was in September, and I continued to see him once a month through to November. I told her about how he didn’t really seem to remember me from visit to visit, and how each visit his ideas would change; one visit he would suggest that it was my birth control, the next he would send me for more blood work. From her face, I could tell she agreed with me that he is pretty out of it. (He’s a nice guy — don’t get me wrong! — but he’s pretty old. His brother was exactly the same way: nice, but very forgetful and a little cooky.)
Pam is going to get my reports from Dr. G (rheumatologist), and when I see her again in two weeks we’ll go from there.
I may not have gotten any solid answers this time, but I still feel like I got somewhere. I got the ball rolling on taking care of my mental health, which is ironically the easiest thing for me to fix (with counseling and medication, and with a diagnosis that will hopefully confirm my suspicions of bipolar disorder*), but it’s always hard for me to admit that I need to get help and to actually go get the help. I got the ball rolling on my physical health again, as well. I feel like I got a lot accomplished, because I took the steps I needed to take.
*Other people around me have also seriously suggested that I may be bipolar, including a social worker I used to see when in high school. Ms. Amenta, wherever you are, I miss you so much. You were the best.
PS: I should totally just make a “Depression” category.
