I say we're unicorns because we're the case that doctors learn about in school, but are never supposed to see in their practice. I finally have talked to another person who has my disease!! She's a lovely woman from Kentucky with that slight southern drawl that puts you immediately at ease. We talked for a few hours comparing notes and symptoms, sharing horror stories and difficulties. And above all, we shared our fighting spirit. Neither of us wants to settle for a marginal quality of life. We want to know about our disease in order to conquer it. We don't need to be what we once were, but we know we can be better than this.
Our pattern of disease is very similar, as is our current list of complaints. We've both run into the same sort of stigma in the health community, and similar apathy from health professionals towards our disease. It was like I suddenly had a sister who I was able to turn to and validate, "yup, our parents are off their rocker on this one...". I learned that my experience was not unique, and therefore not my fault.
Now that I know this, I have a whole new crop of questions. Why aren't doctors more interested in our case? Why go into medicine if not to delve into these mysteries? I feel left out in the wilderness because of what seems to be a reluctance to leave the well-lit safety of "what we know." Our symptoms get managed at the absolute bare minimum, but we're never actually given a quality of life. Why is that? Our doctors, wonderful though they may be, shy away from acknowledging the chronic pain and resulting fatigue. (I suspect the War on Drugs has a lot to do with that.) I was absolutely shocked when I finally got a diagnosis of small fiber neuropathy, because that meant an acknowledgement of my pain. And I was able to pass along the name of that diagnosis to my new friend. We're going to keep in touch to see what sort of progress we can make: her in Kentucky, me in Colorado.
One good thing I learned was that going to a specialty clinic like The Cleveland Clinic wouldn't help me. She'd already been and they really had nothing new for her. They were more interested in her doctor, who was able to diagnose her, than they were in her. It was as I suspected: a lot of great marketing, but really the same health care opportunities (or lack thereof) beneath. I dodged a bullet, thanks to her exploration.
I think the most important thing I learned though was that she was just as frustrated as I. She too was driven to find her own answers. She has the same level of dissatisfaction that I do. We both believe there's a more aggressive way to treat us that would give us a better quality of life. We hate that we can't make plans on Monday for Friday, and know we're going to be okay once Friday arrives. We know that pain management exists. We just don't understand why we're being denied access to it. We have a disease that can be verified with blood tests. It's not like there's nothing else wrong with us. Why is it so difficult to believe we have chronic pain as well? Why is it so difficult to understand that some days are worse than others, and flares are unpredictable? Why is it so hard to believe that we really are trying to be more active in life, and aren't just looking for some fix?
There are two conclusions I come to: either they can't/don't care, or they can/do care but it doesn't matter---there are outside forces at work. This is what upsets me most about our health care system. It seems like there is so much that goes on behind the scenes that we don't get to know about but has an affect on our care anyway. The doctors are making their decisions based on what they see, but they rarely explain what it is they're concerned about. I know I would only need a baby dose, 2.5mg, of oxycontin twice a day to handle my regular level of pain. I know that for my flares, I could need as much as 20mg, at worst. That's less than I was on for my chronic migraines. At that time I was on 60mg, three times a day, with a free pass to the ER for as much dilaudid as I wanted. My pain isn't that bad now. I don't need that high a dose or a note for the ER, like before. But still there's this absolute reluctance.
There's also a reluctance by our doctors to prescribe additional medications, even though we are still suffering symptoms. I know I did better when I was taking additional T3 supplements for my thyroid. I had to move, so I lost that doctor. Since then, I keep getting this song and dance that, "because it's not proven..." they don't want to try it. Well, I've been on it before and I felt better. I performed better throughout my day. I was healthier. Isn't that proof enough? But getting a doctor to reach that conclusion is like pulling teeth. This reluctance makes much less sense to me, since we're not even talking about abusive substances. So what's going on there? I don't know that we'll ever get to know.
Even though it's not all good news, it's still a huge relief to know I'm not alone anymore. These problems that I've encountered are not unique. My symptoms are not unique (we both turn ash grey with a bad migraine!). I have validation. I have confirmation. I have a sister-in-arms in this battle against our disease. I feel recharged and ready to give my all again. I'm not just fighting for me. I'm fighting for her too, and she's fighting for me. Together, we can make better progress than we could have alone.
Christmas came early this year ^_^
(Published with permission)