Health in Seattle

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So I met with a doctor at the UW clinic in Northgate and I was super optimistic about being proactive in finding the cause of my chronic pain and fatigue, and then find the right treatment. I was prepared for the multiple specialists visits, the copays, the waiting game. 

I didn't go into the first appointing with hopes of a miracle answer day one. I wanted to just meet the doctor, feel her out, give her some of the complaints and ask her where we should proceed from there. During this time, not only was I having chronic back pain that began to prevent me from doing the best at my job and affecting my sleep, I also began to have heavy and excruciatingly painful periods that were lasting 1-2 months at a time! I went from having 3-4 periods per year since it all started at 13, to being 30 and almost bleeding constantly with maybe a full week of respite between if I was lucky. So, we set up a wellness exam to begin with. 

When I came back for the wellness exam, the periods were still killing me and I really wanted to get my blood tested to check my overall health. I was convinced that I was developing type 2 diabetes due to being so overweight, and I wanted to check everything that I could to get some answers. In hindsight I can see that my demands were a little all over the place and I just don't think that this young doctor had the experience in her belt to guide someone like me. She also wanted to do a pelvic exam at that visit, but I was so uncomfortable that I asked to just get a referral to a gyno. I did get a flu shot and updated my vaccines though!

After a long wait, I finally got an appointment at Rheumatologist to try to get some once and for all answers. Unfortunately I was not aware that it was going to be yet another, even younger, and male student doctor. His bedside manner was atrocious. He was short and thin and I could tell he immediately just focused on my weight. He listened absentmindedly to my history of do I or don't I have Lupus or some similar autoimmune. He asked me the same questions that even a generic google search could have come up with. Do I have light sensitivity? Where does it hurt? Have I ever had a urinalysis with protein spills? blah blah. Then he said that based on what I've said and answered, he doesn't believe that I have Lupus and isn't going to order any tests. He stood up and said he wanted to test something. He said he was going to press on some pressure points and I was to tell him if it hurts or was tender there. Every spot hurt. It both hurt and felt some kind of relief by being pressed, like the good pain of a massage. 

He excused himself from the room, and I was fuming mad. I felt like he just dismissed me completely. I didn't necessarily hope to have Lupus or another AI, what I hoped for was a doctor who listened to me, who explained things without dismissing me, and who was proactive in finding what was the actual cause of the pain. I sat there just allowing myself to get more and more angry, rather than calming myself down in order to speak up. 

He came back with an older male doctor who said he was his supervising doctor. That's when I realized that I was dealing with a n00b and it turned my anger from red to crimson. The older doctor just repeated what the younger one had said and then said that based on the pressure point exam, I have Fibromyalgia and they handed me a one page printout on what that means. Then they sent me home. No explanation of Fibromyalgia, no advice on how to deal with it, nothing at all about where to go from there. The print out basically told me that Fibromyalgia is a disorder that can't be tested for other than being pressed on and is determined by the doctor based on opinion. It also informed me that Fibromyalgia is often diagnosed when there just isn't any other explanation for the pain but that a certain percentage of the pressure points trigger pain when pressed. And the only treatment for Fibromyalgia was antidepressants, the one that I quit taking.

I remember sitting in my car thinking, That's it? That's the answer? I had a hard time accepting that Fibromyalgia explained everything based on how dismissive the doctors were with what I was actually saying, how little information they got from me before just deciding I have Fibromyalgia, and my gut just told me that it was wrong. I still don't know if it was a true diagnosis or not. 

Shortly after that appointment, I had my gyno appointment. I was so thrilled that it was a woman. I told her about my menstrual experience and also mentioned that I was concerned that it could be PCOS. I had been watching My Big Fat Fabulous Life on TLC and I had so much in common with Whitney's body and health issues. I could sense immediately that the gyno had inwardly rolled her eyes. I told her my symptoms that made me think that it was a possibility. She performed a pelvic exam, took a biopsy sample, swabbed for STD testing (because I asked), and talked me into getting a Mirena IUD with the promise that it would stop my heavy and irregular bleeding as well as being a birth control method. I trusted her, even though it wasn't what I was coming in for. But I desperately wanted the bleeding to stop, so I went for it. She told me it was super easy, she could do it right then and it may only cramp for a day or so afterward. I didn't feel anything at all when it was inserted and got up and walked out feeling like a woman in charge of her own body!

I'll continue this series on my health journey next week. 

xoxo Sheri

Healthcare...wah!

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I'm one of those people who avoid going to the doctor, I admit it! But maybe not for the reasons that you think. I don't fear the doctor nor do I have any huge aversions to needles or blood. It's the paperwork, lost documents, long waits in the Petri dish of a waiting room, the strict rules to protect the doctors and the zero tolerance policies for flexibility on the patient's end, all the unanswered questions, and most of all I can't stand all the male doctors who speak down to me in the examination room. It's most these types of doctors that keep me at home trying to find my own remedies. 

I would say more often than not I've experienced those types of doctors. I like to use my 15-20 minutes in the exam room wisely and I don't go into an appointment completely blind. I like to do my own research, I like to record my symptoms over time if relevant. I come to appointments with medical records and whatever information that I think is applicable. My best guess is that I come off as a hypochondriac. I probably look like a lunatic who uses WebMD for every ailment. But my time is precious! I pay for insurance out of my own pocket and every penny counts. I can't take off work all the time and I like to make the most out of a doctor's visit. 

Backing up a bit, I need to say that I don't mean going in for a few sniffles and a sore throat. For over 10 years I've been in and out of doctor's offices and had a few hospital trips here and there. I seem to have some sort of chronic ailment causing widespread pain. Around 20 years old, I was in Phoenix visiting my godmother (before I moved there). I was writing postcards to some friends and felt pain in my right thumb at the base and the surrounding area on my hand. It lasted for more than a week or two so when I went home I went to the doctor. 

I had health insurance back home in California through my mother or her husband, I don't remember. I went to my general practitioner. He was an old white man who didn't really have the answers. He noted my irregular menstruation and said it's probably because I'm overweight. He showed me how to do some stretches against the wall for my hands and wrists. I told him about my family's medical history, or what I knew of it. I was 20 and it was probably the first time I went to the doctor's on my own. I had no idea what I was doing. I mentioned that my maternal grandmother has Lupus, though I didn't really know what it was and what it did to her. He seemed concerned and I vaguely remember thinking of course, of course that's what I would inherit from the Scottish wench, an autoimmune disease. After that appointment he sent me on to a Rheumatologist thinking that there was something terribly wrong with me.

The Rheumatologist was another man. He was in his 30s and Asian. He seemed timid and afraid to talk to me directly. Maybe he was a new doctor? I don't know, but I remember not exactly understanding what he was telling me. He said while it wasn't 100% certain that I had Lupus, my rheumatoid factors were off and it was something to monitor. He also gave me two bottles of pills for treating...something? Again I don't know what I was being treated for, just that I was at some kind of specialist and that he was confirming that something was wrong and he gave me two medications to start treatment. By this time, my hands were hurting so much that I was unable to take notes at school. I have a vague recollection that this doctor wouldn't even look directly at me.

I started taking the meds and they made me so sick. I have no idea what they were, I can't remember. But they made me nauseous and gave me headaches and made it so I couldn't even get out of bed. I don't know how long I took them, but I eventually gave up. The side effects just weren't worth whatever help they were suppose to give me. 

Afterward, I was tricked by my mother to go see Dr. Wallace. I don't have an opinion about him, so this isn't about that. But he was my grandmother's doctor. Skipping the dramatic explanation, I don't have a relationship with her nor do I trust my own mother. But it was a rare occasion in which my mother wanted to try to help me. Hmm...help me? She told me she found out about this Lupus doctor who's in Beverly Hills and he's really great. She wanted me to go see him and she would pay for it! I asked her if he was the same doctor my grandmother saw. (Just trust that I want nothing to do with that woman.) She swore up and down that he was not. Spoiler alert: he was. 

I went to the appointment. He had me lay back and he felt around on my torso. He asked me if I've recently lost a lot of weight because I had so many stretch marks for someone so young. Thanks, Doc! He asked me a bunch of questions (Lupus and autoimmune diseases are largely diagnosed with questions in addition to blood work. For example, Lupus, they ask about light sensitivity and rashes and test for protein spills in the urine. Fibromyalgia doesn't have any lab work for diagnosis and is solely based on questions and pain at certain pressure points.) and concluded at the end that I probably didn't have Lupus, but to come back if other systems come up or worsen. Ok, thanks. 

Then I lost a lot of weight through diet and exercise. I became pretty physically fit and even moved to Arizona. I lost my access to healthcare by moving, but the doctors weren't doing anything for me anyway. The pain continued, even with the weight loss. The pain spread to different places. My knees hurt, and my back was getting increasingly worse. I did lots of yoga, lots of hiking, was an active college student who biked to school, and I was a nanny for 4 young kids. Yet I felt exhausted and pained like an 80 year old lady. 

I spent the next 6 years in AZ with limited access to healthcare. I just sucked it up and thought I was doomed to a life of pain. I was also in a stage of life that I was focusing on my mental health more than anything. I had a lot of doctors telling me that my pain is mental and that if I just get over whatever it is that's causing my mental issues, then my body will feel better. Right, okay. While I can see some logic in that and I do acknowledge and there is a correlation, if I did in fact have some sort of disease, positive vibes wasn't really going to cure me. I just wanted answers so I can put my effort toward treating it. 

Stay tuned for part 2 of my healthcare saga.

xoxoSheri

Do you have your own horror stories from visiting the doctor? Have you been successful at finding your own diagnosis? Do you have a hilarious story? Share in the comments below!