People often laugh at me as I rack up my degrees, from a BS to an MA, and now a JD and a PhD. But now I am starting to think that maybe I need a medical degree too, because I am starting to get fed up with the treatment I am receiving.
(This is a long post, so continue after the jump if you are interested in my complaints about my medical care…)
As you know, if you’ve been reading for a while, I was diagnosed with fibromyalgia over the summer, a not-very-well understood condition characterized by wide-spread physical pain. Fibro often occurs in conjunction with other things, like auto-immune diseases and mental illnesses, including depression. I’ve suffered from depression since I was a child, and was first treated at age 16, which was 12 years ago. Recognizing now this new thing called fibro, I think I’ve had it much longer than my diagnosis would indicate.
I’ve been seeing doctors here using my university-provided health insurance since got here. I started in psychotheraphy, as being in grad school and having kids and a husband is pretty stressful. I’ve also seen a few psychiatrists, as I’ve been on anti-depressents continually for the past three years.
When I first started feeling really bad, I told my therapist about it, who told me to just keep an eye on it and that maybe I just needed to exercise more, espcially as exercise is known as a treatment in depression. I said, okay, whatever. As I started to feel worse, and did some internet diagnosing to see if there was something new I was doing that was causing new pain, I looked up the Mirena IUD, a form of birth control I had inserted after having my daughter. Some of the anecdotes I saw online said they were feeling some of the symptoms I had, and after they had the IUD removed, they felt better. I thought this might be plausible as I’ve had negative reactions and side effects with hormonal birth control too (although the Mirena IUD has much less hormones than, say, the Pill.) So I went to see my GYN too check it out.
The GYN says no, Mirena wouldn’t be causing your symptoms, and I kinda agree with your therapist – your body is adjusting to having two kids in two years and you need to get in better shape. She suggests seeing a physical therapist and chiropractor. I love my GYN, so I decided to follow her advice. But my insurance requires a referral from the primary care doctor.
I make an appointment to see a primary care doctor, and since we have an on-campus health system with many doctors, I make an appointment to see one f the many doctors and NPs that work there. I make a short appointment, because I thought it was as simple as getting a referral. I was a few minutes late.
The NP pooh-poohed the idea that I was that out of shape to be in that much pain. I’m young, thin, and active; at the time I rode my bike everyday, picked up and played with my kids, cleaned my house. I have great blood pressure, cholesterol, etc. She says that there is something else going on, and has me come back for more tests, etc, and referred me to a rheumatolgist. The rheumy says, oh, you have fibromyalgia but I don’t want to place that label on you…but I’m going to refer you to the pain clinic who can help.
A week or so later, I experienced an extreme amount of pain in my left arm, and it felt like my other arm was going to fall off. I’m a yoga teacher/practicioner, and I could not do sun salutations. I went back to the health center, again making a appointment with the first doctor that was available. This time it was a MD, not an NP, and he “took over” my case. Started a course of treatment that involved adding an antidepressant to my already long list of meds, and had me start with a long term therapist off-campus (who costs $70/hour, BTW and is contributing to my money woes, but I love her, so…)
While the rheumy suggested I see the pain clinic, again I must have a referral from my primary care doc. They decide that the pain clinic is NOT the best choice, and I should see the integrative medicine clinic, which does non-pharmalogical interventions. Fine, whatever will work. Saw them for a few months of accupuncture, which I still feel inconclusive about its benefits (in my body, not overall). So I still feel bad, and finally say – hey, give me a referral to the pain clinic. They do, but it takes a few months to get in there. So in the meantime, I wait. I could continue accupuncture, but insurance only pays for 15 sessions a year. The doctors there say you need at least 2 sessions per week for a while, and then one session a week for maintence. I’ve used my 15 sessions, and after insurance it’s $150/session. Money I do not have.
I finally get into the pain clinic, and for all the research they do on fibro, they treat me very much like it’s all in my head. In any case, they suggest that ramp up the dosage of the new anti-depressant my doc put me on, but I would also have to decrease my old anti-depressant because of the possibility of serotonin-syndrome. But they don’t give prescriptions, they make a recommendation and send me back to my primary care. Primary care is not comfortable making a decision about messing with the anti-depressants, esp. since I’ve been on the one for so long, and have done relatively well on it, as compared to others I’ve tried in the past. So he has me meet with an in-house psychiatrist (the last one I saw went on maternity leave) to discuss the matter.
So, I meet with this new psychiatrist, who tells me that he’s going to talk to all these different doctors to figure out what’s going on. I’m relieved, b/c up to this point, no one was talking to each other; a doctor would see me, write up a report, send a letter or post it to my file for the next doctor to read. But no real talking, dialogue going on. So when I meet with him again in two weeks, and he’s like hey, we’re going to do this which is not follow the pain clinic’s recommendation, I’m like, oh, and you talked to the pain clinic, and he’s like um, no but…I’m annoyed and unhappy. He decides that b/c the old antidepressant (AD#1) works so well, that he wants me to stay on it, discontinue the new anti-depressant (AD #2), and start a new anti-depressant that has recently been approved for fibro (AD #3). What do I know? So I say okay.
This was about 4 weeks ago. The first two weeks I had to stop AD #2 to get it out of my system. Then I started AD #3 at a low dose. Last week I talked to him again, and let him know that I was feeling worse, not better. And I was doing all the other things I am supposed to do – exercise every day, teach my yoga class, see my therapist, get good sleep. And now I’m back in pain. He says, well, let’s see how things go – stay the course, and I’ll see you in another two weeks. Maybe I was especially stoic in our appointment, but by the end of the night I was in agony. I told my husband, at 2am, that I needed to go to the emergency room. The pain was like labor. I couldn’t wait until morning to go to the health clinic. The ER gives me 4 shots of morphine and a prescription for vicodin.
The first couple of days, I take the vicodin round the clock, cause that’s how bad I needed it. But on Friday (the ER happened Wed/Thurs) I was back in my routine, exercising even though I was in pain, teaching my yoga class, albeit modified, not drinking wine as I usually like to do at the end of a long week…all of it. Trying not to be a victim. Taking control of my health. Doing what the doctors say is going to make me feel better if I just stick with it long enough.
I sent an email to the psychiatrist, updating him on what’s going on. This is what he sends back:
Thanks for letting me know how you are doing. It is certainly unfortunate that you are having an increase in your pain. We have an appointment on 3/XX/09 at X:XX. In the mean time, it might be helpful to schedule a follow-up appointment at the Pain Clinic. If you need anything before then, please let me know.
Maybe it’s just me, but does anyone else see the absurdity of this? Follow up with the Pain Clinic and tell them what? That they gave me a recommendation but my doctors decided not to follow it? I can’t write myself prescriptions (hence the possibility of needing a medical degree), so what does he expect me to say to them? I didn’t mess this up – I’m not a doctor! Maybe if he would have spoken to them in the first place, we wouldn’t be in the situation. But what it really is is not “we” but “I” – yes, it’s “unfortunate” to him that I have increased pain, but it’s life-changing to me!
You know what I realized today? My therapist believes (and I do too, to a certain extent) is that my pain is my body’s way of sending me a message that something needs to change. Two weeks ago, I met this amazing singer who is putting together a band, and I offered my services as a background singer. If you know me, you know singing was a HUGE part of my life prior to my kids, and I’ve been missing it something terribly. The issue is that rehearsals are a 30 minute drive away. I talked it over with hubby, who agreed that even though the ride was long, I would do it only twice a week, and I would leave only about a 1/2 hour before the kids went to bed. So I’ve been doing that.
But because my pain is not under control, it seems that my body is saying – Yo!! Hold Up! This ain’t gonna work! And I’m so dissapointed because I feel like I have to stop doing something I’m absolutely loving (she’s a great songwriter and the director is so talented and I’m learning so much) because I have doctors that I feel are not taking me seriously and see my pain as simply “unfortunate.” And it doesn’t help that I’m TA’ing a class on racial disparities in health, and seeing that black women get horrendous treatment in health care, and that I need to be kicking and screaming claiming that I’m dying in order for someone to take me seriously. I’m in a few online support groups, where most of the members are white women, and while they are getting not great care too, they are getting opiods like vicodin to help control their pain, and prescribed by their doctor. And they are not the first people with fibro that I’ve talked to that swear by vicodin to get them through the day. But I’m starting to wonder if because I’m black and a woman if my doctors are hesitating to prescribe a narcotic, like the evidence shows they are?
This was such a long post, but I just needed to share my story because I’m so frustrated. Never before have I felt so at the mercy of others for my quality of life, and it’s really pissing me off. Of course anger and stress aren’t good for the pain…whooosaaaaa….