Perpetual Smile

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.

Seriously. I want Crohn’s Disease. Do you know why? Because it would be a diagnosis, finally, and it would make sense; my maternal aunt has Crohn’s Disease with rheumatoid arthritis.

Things are about to get icky. If you’re not down with the icky, I totally understand if you leave right now.

Let’s compare my symptoms to those of Crohn’s (and if Firefox knows what’s good for it, it will stop telling me that I am misspelling Crohn’s).

My Symptoms:
These occur during a flare-up* of whatever the fuck autoimmune disease I have.

• Bubbles inside of mouth
• Dull aching to sharp aching pain in arms, legs, hips, back
• “Patches” on my hands and fingers that feel as if they have been scraped when touched but there is no visible injury. I’ve had these invisible patches since I was a little kid. I always thought it was normal.
• Little “cysts” on my hands and fingers
• Blood in and with my stools, very hard stools
• Little “cysts” on my asshole (told ya it was about to get icky)
• Styes on both eyes

*I say flare-up because the symptoms are not always present. I can go hours, days, weeks, sometimes months without any symptoms, and then BAM! A few of them or all of them pop up at once. Sometimes, they only last a few hours. Sometimes, they last days.

Symptoms of Crohn’s Disease:
Taken from MayoClinic

• Diarrhea, though I have heard of some people with Crohn’s who have the opposite problem — my problem
• Abdominal pain and cramping — When I looked up the symptom’s for Crohn’s last night, I suddenly thought of all of the times I had severe abdominal pain and cramping. I’d always thought it was normal, just my body’s way of saying, “Time to go!” but now I’m thinking it isn’t. Should I add it to the list?
• Blood in your stool — Hi. I’ve filled a whole toilet with blood on several occasions. Talk about being on the verge of passing out. That is so not normal.
• Ulcers — Meaning, ulcers in the intestine and in the mouth, similar to canker sores. My little “bubbles” don’t hurt, but they’re there. I have no way of knowing if I’ve got ulcers in my intestines without going for a colonoscopy. I’m not very keen on doing that.
• Reduced appetite and weight loss
• Fever
• Fatigue — Fuck yes. I’ve had a lot of late nights lately, but sometimes even when I’m getting what I think is enough sleep, I’ll get hit with this “bone tired” feeling that I’ve never, ever felt before.
• Arthritis — Even though all of my arthritis tests keep coming back normally, I’m pretty sure my pain is arthritic. I know I’m not crazy. Then again, crazy people don’t know they’re crazy. Oh fuck, I am screwed.
• Eye inflammation
• Skin disorders — You can file styes and eczema under “Skin Disorders.” I’ve had eczema for years but never attributed it to anything. More and more I am finding out that things I’ve always dealt with are probably related to my Mystery Autoimmune Disease.
• Inflammation of the liver or bile ducts
• Delayed growth or sexual development, in children

So is it Crohn’s? Maybe not. But I need a damn diagnosis, before I go crazy. It would make sense for it to be Crohn’s, since my aunt has Crohn’s.

I go back to see my PA on Friday. I haven’t seen her regarding all of this in a while. I was seeing a rheumatologist for a few months, but he is either very absentminded or crazy, because every time I see him he has a different plan or take on things, and he also seems to forget what I’m there for. I want to update Pam (my PA) with all of my symptoms and pick her brain on the Crohn’s. If I’m going to test the Crohn’s waters, I’m gonna have to get a colonoscopy, which is totally not cool but probably very necessary. Last time I mentioned my potty problems to her, she said if they persisted I would have to go get one. I became very careful not to mention it again because the thought of anything touching me there or going inside there sends me into tears. I have a good, very personal reason for not wanting to get the procedure done, but the symptoms have not gone away. They seem to be in sync with the rest of my symptoms, all popping up around the same time and then relaxing a little.

I think it’s time to take the next, very scary but very logical step and arrange for the colonoscopy so I can either check Crohn’s off the list or adopt it as my official autoimmune disease, and definitely so I can make sure none of my intestines are damaged.

Either way, it’s time to get back to sleuthing. My life is pretty much on hold until I solve my own episode of Mystery Diagnosis. I want my life back, and I’ll take whatever comes with the Mystery Autoimmune Disease if it means that I can have a diagnosis and treatment plan. I don’t care about a cure at this point. I just want to be able to have the future I’ve always wanted: marriage, a family, continuing with my career and other projects, continuing with my writing. I definitely can’t have any kids until I know what is going on.

So, to the doctor I go (again)!

PS (01/28/2010): Just fixed a bunch of typos. Sorry about that.

Here’s an updated version of the symptoms list I posted in June 2009. Same deal: for my reference, hoping someone might say “Ah-ha!” and diagnose me. Warning: some of this is gross. Don’t read it if you think I’m sexy.

• Dull and achy to very sharp, stabbing pain in fingers, hands, arms, legs, hips, knees, feet. Migratory and happens at random. Could last seconds or days.
• Jello, rubbery feeling in arms and legs. Sometimes I can’t walk.
• Weakness in arms and legs. Sometimes I collapse and can’t carry things.
• Occasional swelling (once in right ankle, several times in base of left thumb)
• Itchy, sometimes painful, clear bumps on hands (palms and fingers)
• Multiple styes in both eyes. I can’t get rid of them no matter what I do. I’ve just learned to ignore them and seldom wear eyeliner now so that I don’t aggravate them.
• Bumps on the inside of my mouth, usually on the inside of my cheeks. They’re not painful but they’re annoying and pop up all the time. They go away by themselves, but then end up coming back
• Hemorrhoids. It doesn’t matter what I do or don’t eat. I’ve just learned to suck it up and use a lot of A&D.
• UTI-like symptoms: trouble urinating, frequent urination, pain when urinating. This hasn’t happened in a while, thankfully, but it’s been so bad that I thought about going to the ER. Urinalyses always come up fine.
• Hot flashes. This is new. I get overwhelmingly hot, sweat beads at my hairline, I feel like I can’t breathe, and then it’s over.

Hooray.

Also? I’d like to add that I only add symptoms to my list if they’ve been hanging around for about a week. Sometimes I’m stubborn and wait a month to say, “yep, let’s add it.” I’m far from a hypochondriac and just wanted to make that clear. Just sayin’.