Is there a (good) doctor in the house?

When I was a little girl, maybe five or six, I got sick. It was just the flu or chicken pox or something unglamorous, I don’t mean I was like hospitalized or anything exciting. I was just home from school for a day or two. I remember very little about it except that my Dad came home from work and presented me with a little package of colorful, silky hair ribbons. I absolutely loved them. I have no idea what happened to them or if I ever even wore them, but at that moment, I was so enchanted with these beautiful hair ribbons. I adored my father, but he was so busy all the time that him giving me these hair ribbons felt so special, like he had been thinking about me. I don’t know if this particular experience was the reason, but I just sort of have fond, fuzzy memories of being sick. I just have a cozy association with being all snuggled in bed with tomato soup and saltines and Murder She Wrote reruns on the TV. So of course it would not be at all surprising if I just pretended to be sick. A lot. 

            Now let me be clear. I am not a hypochondriac. Not at all. I can read those medical websites and I am very aware that I do not have moderate to severe plaque psoriasis or IBS and my occasional stress headache does not make me think I have a brain tumor. I’ve had irregular mammograms and never have I thought it was anything more than a false alarm (and I’ve always been right thankfully!). Well OK once I thought I had Borderline Personality Disorder because I was so angry at this particular person that I didn’t give a rat’s ass what happened to her and obviously I had no empathy for her at that moment and well that’s one of the symptoms of BPD so of course I had it right? Now I can be a drama queen extraordinaire. I can make mountains (think Everest) out of molehills. But I just do not have any imaginary symptoms or diseases that haunt me in the middle of the night. I hardly even ever get sick. I had a sinus infection back in 2011 and I thought I had a cold this year, but apparently it was just oak allergy season. So I just never get sick. Which is very disappointing because I do love those Murder She Wrote reruns.

            Back in 2012, I started noticing I was tired. And I don’t mean a little sleepy. I felt like my body weight had tripled. Walking up a flight of stairs was exhausting. Rest was not helpful. I also had a pain in my chest when I would breathe in. Like I couldn’t get a full breath of air. At Bill’s urging, I made an appointment with my doctor. I explained that I felt abnormally tired and struggled to breathe. She seemed unconcerned. She said nothing in my lab work looked unusual and asked if I drank enough water. She sent me home with a referral to see a psychiatrist for anxiety. I went home and cried. I saw another doctor a couple of months later and explained the symptoms yet again. She asked if I had seen a psychiatrist. I went home and cried again. Next, I saw my obgyn and explained that I was starting to feel crazy because I was having these physical symptoms and doctors kept saying I had anxiety. She told me I sounded anxious and to see someone about it. Finally, I made an appointment with a doctor that other people had recommended and I went in prepared to say this was not anxiety and I needed someone to address what was wrong. He ran all sorts of tests and he seemed to listen to my concerns. I wondered if I had asthma because of the breathing pain. He said no. He actually said to me “you know, we don’t look for the zebra, we just look for the horse,” meaning he wasn’t going to spend time looking for anything that might be unusual going on. I felt defeated. He gave me an inhaler and told me to see a psychiatrist about my anxiety. And you got it, I went home and cried again.

            In December 2013, my hands were suddenly covered with a rash. A painful, blistery, very ugly rash. I hated to go to a doctor, but it was kind of a crisis. I called and spoke with a nurse. Thankfully, the doctors I had seen before were unavailable, but they had a new doctor who could see me that day. Apparently, a rash of unknown origin constituted an emergency. The doctor looked at my hands and asked me some questions and then he asked if anyone had ever tested me for an autoimmune disorder. I told him no and he ordered some tests. I told him that I had an appointment to see my dermatologist the next day and he said that could still be helpful. The next day, I went to my dermatologist appointment and she biopsied one of the spots on my fingers. My tests came back and I indeed had an autoimmune disorder. The doctor scheduled me to see a rheumatologist so she could determine which kind. While I waited for the rheumatology appointment, I saw my dermatologist again and she asked me if I had herpes. No, I said. She said the rash I had was something that is associated with herpes so again she asked me if I had herpes. Now I don’t lie about my health. Ever. Especially to a doctor. If I had herpes, I would have told her. She prescribed me some medication for my hands and I went home. I looked up the medication and it was for herpes. She didn’t believe me! Needless to say, I went to another dermatologist who explained that she had been completely wrong and what I had on my hands had absolutely nothing to do with herpes.

            In February, I finally saw the rheumatologist and she diagnosed me with something called Sjogren’s disorder. She said it was the best-case scenario for autoimmune disorders. Basically, it causes fatigue, dry eyes and dry mouth and while it can be inconvenient, it’s not lupus or multiple sclerosis. I was relieved to finally have a diagnosis. She prescribed something that was supposed to reduce the impact of the symptoms, but it could take a few months to actually work. Almost five months to the day of starting that medication, I started feeling better. I had more energy and didn’t feel the debilitating fatigue. The dry eyes and dry mouth stuff is annoying, but I don’t think I have it nearly as bad as other people. For the most part, I feel pretty good.

            So I guess what I’ve learned from all of this is that we have got to be our own advocates or if you can’t stand up for yourself, find someone that can stand up for you. I am not angry with the doctors that kept dismissing me with a diagnosis of anxiety. I could have told them to keep checking for the zebra. Maybe they will think you are crazy, maybe they will be mean to you. If so, go to someone else. Don’t accept substandard care from your doctor. You are worth quality care. You know when something is not right, tell your doctor. You don’t have to be intimidated, they are people too. And if they make you feel intimidated, go see someone else. And keep going back if things don’t get better. There are solutions. And you are worth it.

            And maybe I can just snuggle up in my bed every once in a while and just relax, who says you have to be sick anyway to enjoy some tomato soup, saltines and Murder She Wrote?