I have had many conversations with many doctors about my prognosis and treatment. There are times these conversations are redundant. Not in a bad way, it’s because there are times when there are no changes in my symptoms or blood work, which in my case has usually been a good thing. Why? Well, it means things are not getting worse at that time.
Because I see my specialists four times a year, it means I have many appointments. How many specialists do I have? Well, there’s rhematology, pulmonology, gastroentorology dermatology, podiatry, occupational therapy and psychology- you now to help me manage dealing with all my specialists. Then, there are appointments for tests that these specailists need, to keep up with what my body is doing; pulmonary functions test, twice a year; echo cardiogram once a year; and my personal favorite, an upper endoscopy. That’s where a doctor sticks a camera down my throat. I say that because I usually wake up feeling very happy. The sedatives they use on that test get me a little silly and if I have to have crazy tests, I might as well enjoy a buzz every now and then. Okay, aside from my chronic illness monitoring, there are my regular yearly visits to a primary care physician for regular check-ups, then my OBGYN for my lady-parts. Long story short, I spend a lot of time with doctors, nurses and healthcare providers.
It’s not all that bad. Once, I had a gaggle of test results from the VA Hospital to share wth my doctor at UCLA. I requested and received a disc with those tests, brought my laptop and some snacks to UCLA and spent an hour reviewing the tests with my Rhuematologists. I learned a lot about what the tests meant to my health and my doctor was able to enjoy a snack. (Seriously, if you can, feed your doctor they do back to back appointments all day. It wouldn’t kill you to throw them a snack every now and then. Sometimes, I just grab a candy bar on my way in. But only for your favorite docs. You don’t have to be slutty about it.)
What were we talking about? Oh yeah talking with our doctors. For me, talking with my doctors is easy. If I don’t understand, I ask questions. I have had some weird appointments, but after 2o years of this, they all kind of run together and I just remember ones I learn from. The tough part for me, is repeating what I have learned to my family.
And now, we can get to my favorite question, “So… What did the doctor say?” It feels like a trick question. When asked, I’m not sure what people mean. Do they want to know my blood work numbers? Do they want to know every word that was said? Which doctor?
Yeah, my attitude can be considered somewhat crabby and I wouldn’t be offended if it was thought of as downright bitchy, but I can never give the right answer. The people who ask me that question, love me very much and they want to hear good news. Often, I have nothing new to say from the last appointment. Sometimes I learn something so exciting, I use latin based words. Once an ex-boyfriend replied, “Stop trying to sound like a doctor. You are not that smart.” (Hence the title, “ex”.) Seriously, dating has given me so much material, not about men, but about ignorance, sheer stupidity and downright douche-baggery (thats ignorance with malice), but I digress.
Back to my point: It used to be disappointing to not be able to relay to loved ones that things were not getting better. They were either stable or going in an unknown direction. So many times, the result of my appointments are, “Okay, we know something, let’s see where this something goes.” If I had to hear that about my kid all the time, I’m not sure how I would take it. I believe that if you truly want to torture a person, hurt their child. That’s what chronic illness does to parents of children with a chronic illness- no matter the age of those children.
Because I plan to live at least another fifty years, I had to find a way to make reports about my doctor visits not so uneventful, less uneventful when reporting to family. Everyone needs encouragement, but I didn’t want to do it by providing false hope either, but I accidentally found a way.
I’m not sure when I had this conversation with my mom. I do know it was before my sarcoidosis diagnosis. It went something like this:
Mom, “So…. What did the doctor say?”
There had been no change in anything, so this just sprang from my mouth, “Mom, the doctor said I have scleroderma.”
There was a pause, then my mom started laughing. I was so relived. I found a way to make my mom laugh. Watching my parents worry and wait is not easy, but I have it easy compared to their worry about my health. Making my mom laugh made me feel good. I used the same response on my dad and he laughed.
It wasn’t just making lemonade, it was taking lemons and squeezing lemon juice back at Life’s eye. (By the way, I totally ripped that off from the cartoon, Gumball)