Self Advocacy, and Answering Questions

Speaking to an acquaintance about the health issues I've had he suggested I may want to post a more detailed telling of my experience, in hopes of helping another person out. Given the number of personal accounts I read in trying to find my way, I will take his advice. Please be aware this is only my experience, and cannot substitute your own consultation with medical care providers. This is an abridged overview, with some medical visits omitted for brevity. In total I have seen two dermatologists, two rhuematologists, an infectious disease specialist, a pulmonologist, a psychiatrist, a gastroenterologist, a sleep specialists, a weight health center, a nutritionist, a neurologist and an allergist. I am also fairly certain I have not figure my whole situation out, and more information may come.

In the spring of 2010 I was simply miserable. I had a rash over large swaths of my body, (warning: images of skin rash) largely on my joints. The rash wasn't itchy, but painful, particularly when wet. Worse still, I was tired all the time, confused, irritable, easily angered, quickly getting lost in familiar places, and had trouble finding words. I would look at my friend trying to say something, trying to will him to read my mind, but nothing came out. Occasionally I would switch and be able to express myself in Spanish, when English is my first language. As such a verbal person, this was devastating. At first doctors thought I'd been bitten by a bug, or perhaps I was very stressed. Yes, I was stressed, but it was a symptom and not the cause. I was sent to the dermatologist who gave me a prescription antihistamine cream and said to come back if it didn't get better. It got worse, and my symptoms increased. They biopsied the rash on my knee, which came back with the results of "erythema multiforme", or, a nondescript rash with wood like striation. Well, they said, as its on your joints perhaps a rheumatologist. I researched and found a doctor that met my criteria. I was seen by his fellow, and cursorily dismissed, sent to another dermatologist who "has an interest in rheumatology". By this time I had been put on a course of steriod, which may have been one of the worst experiences in my life, and the rash had disappeared. The second dermatologist (and his army of five student doctors) said to call again if the rash came back.

While I no longer presented with the rash I still had all the remaining symptoms. I would fall asleep two hours after waking up, even after drinking copious amounts of caffeine. Further, I didn't feel any caffeine withdrawal symptoms. I had been training for my first 5K when this illness hit in full force, and could no longer walk up a flight of stairs without feeling winded and dizzy. I spoke to my primary care doctor, and we agreed for another rheumatological consult. This rheumatologist was very through, spending ample time with me, asking questions, appreciating my honesty and she was very respectful of me as a person. She found my pulmonary function to be diminished, and check my cardiac health as well. While it was clear something was wrong, she couldn't find anything related to her field.

From this point we consulted with an infectious disease specialist. My symptoms presented as similar to blood disorders or an infection. Given my high SED rate, infection was more likely. This is when my weight began to be treated as a cause. Multiple doctors began to say "If you just lost some weight you would feel better", or "your body is under a lot of stress with your weight". I will freely admit I was very over weight, with a BMI of 43 (morbid obesity), but I had been fighting with my weight for six years and only now did I have this trouble. Further, it wasn't for lack of trying with exercise most days of the week and limited calorie intake. This, perhaps, was the most painful part of this experience. I felt like I was being blamed for my body betraying me, that all my efforts were over looked, and if I were just not another lazy fat person I'd feel better. Being my mother's daughter I wallowed for a short time and then went in to battle mode.

Anything a medical provider wanted to try, I was game. No matter the pain or the humiliation, I would do it. I did a sleep study, and the results did not clearly indicate an apnea (though the private company who ran the sleep lab was convinced I needed a CPAP machine. No, I don't have one, yes, I'm fine. Consult with another sleep doc recently found suspicion if I'd had any troubles to begin with.). I started to see a counselor to prove it wasn't all caused by depression (it wasn't, but my word as a mental health provider wasn't enough). I saw an endocrinologist after providing food journals and exercise logs (using a pedometer) to the infectious disease doctor. The endocrinologist ran some tests and determined nothing was wrong, which I found outrageous. I wanted a second opinion, and this endocrinologist found I did have high levels of cortisol, and should be monitored for symptoms of Cushings. At this point I was out of ideas, and assented to see the staff at the weight clinic and to consider surgery.

As mentioned in the post linked at the top, I consulted a nutritionist and she put me on a 900 calorie diet (imagine living on the equivalent of 9 100 calorie yogurts a day). And yet I couldn't drop any weight. My partner was worried about my nutrition, so we decided to try a juicing diet we had seen in a movie.
I will admit I didn't follow the reboot to the letter. I juiced two meals a day and ate one. Two days in I started to feel great - and none of the warned side effects. Then I had a sandwich and it all fell apart. The bread! It was the bread! I went gluten free, and felt great, but there was still something more. I would still get the rash and have other muscle pain or neurological symptoms. Through further elimination I removed dairy, casein (a milk protein) and soy. I've lost 20 pounds so far, and can see the overweight BMI designation not far away, and hopefully the healthy weight one not far after that. With my health back I am overjoyed to be able to exercise again.

I wouldn't say I'm 100% yet, there are still some days I have symptoms and no idea how. Its a work in progress. The most important message I have for other people suffering in any way is to keep fighting. The irony of the matter is you need to fight the hardest when you are feeling your worst. Despite the litany of medical providers I have seen, my partner and I solved this problem ourselves. It was only though self advocacy, study of medical literature and being assertive that I had the meetings I needed to rule out other issues. If you are worried you can't advocate for yourself, or if you don't have the social support system, consider locating a patient advocate. Present as much evidence as you can. I came to every meeting with a written list of family medical concerns, medical concerns I had from birth to the current day (surgeries, broken bones, infectious disease exposure), and photos of the rash. I also began to refuse treatment of the rash, arguing that it was a symptom. As the body's biggest organ the skin can act as a barometer for the whole system. If your doctors aren't giving you the respect you deserve, the time you need, or the support and answers to improve your health, get a second opinion. Remember: they are the expert in their field of medicine, but you are the expert on your body and how you feel. Both deserve respect, neither can exist without the other.

I hope this post is helpful to someone, and you will all forgive my digression from my typical statements about beauty. In truth, being healthy is one of the most beautiful things around.