Since this journey started almost 8 years ago, I have been looking for a good rheumatologist. Actually, I did have one. She was originally my mother’s. It upset me that I had started down this path. This was in the early days when I was still looking for a diagnosis. She tested me for everything. I tested positive for everything. Well, Sjogren’s, Lupus, rheumatoid arthritis for starters. I cried. She hugged. She told me I was asymptomatic. Also, it wasn’t unusual. She said that one disease could open the door for others. Not to worry, I wasn’t considered progressive. Three visits in, she retired and moved to North Carolina.
Move forward almost a year. I really thought I needed a rheumatologist. I am known for my smile. Inside my lips started to hurt. I could no longer smile. Lipstick hurt. I am also a makeup kinda woman. My neurologist told me not to take hot baths, my favorite form of relaxation. My ability to walk was fading. I felt everything I loved was disappearing and being diminished for me. At this time my mother also seemed to be deteriorating.
I went to the “replacement” rheumatologist. First, he looked like he was 12. Being a Hopkins (non-premed) graduate, I understand the importance of newly minted doctors. I also understand that after a certain age everyone looks 12. But… he walked in with a laptop and I kid you not, surfed the Net with my symptoms. He gave me 5 possibilities – lupus, menopause, herpes, stress and something I forget. Left in a hurry. The symptoms had been easing anyhow. A couple of days later I found out my mother was dying – flare-up! It was stress.
Next, I contacted a roomie from college. I said I went to Hopkins. I went to school with a sh*load of doctors. I see her every five years or so at homecoming. She became head of rheumatology at a teaching hospital in NC. I call her office and leave a message that I’d just like a referral, just a referral. Still waiting…
Even my neurologist has said for the last few years I need a rheumatologist. I have a friend who is also host to myriad autoimmune eruptions, disruptions and events. In December, she looked at my right hand which unbeknownst to me was purple and beyond cold. She warmed it up and announced you have Raynaud’s.
I am taking my usual happy hot bath one night in winter. My extremities are always cold and always have been. I wear socks to bed most of the year. Over the past few years my feet have been getting worse but they warm right up in the bath. So, I get into the bath and notice my hands are freezing and they are not white, red or purple but sort of dead looking, an awful non-color. I plunge them in the bath and swirl around and nothing. They do not change! It must have been 5 minutes or more before color came back and they stopped hurting.
Fingers started changing color more frequently, especially my middle left hand finger. Then at the end of March I stood up at the table with Tom right next to me and did a bizarre collapse and fall. I really hurt my left pinky. Tom made me a splint with a meat skewer. I went in for research study and MRIs. The doctors were much taken with his work. My middle and ring finger started to go dead several times a day! By the time I went to my neurologist, Tom had perfected the splint with a smartphone stylus replacing the skewer. She says next time I fall like that I need to go to urgent care and uh, you have Raynaud’s.
This brings us to today. I asked my autoimmune friend for her rheumatologist who also practices alternate medicine. He is not covered under my health insurance. No surprise on that one. But I believe there are certain things you don’t skimp on. Last year, my neurologist wasn’t covered under my insurance. This year, she is free! This guy is several hundred dollars. He sends me a thorough and complex questionnaire on line. I literally complete 28 pages of questions! I appreciate this as my handwriting has always been awful and lately my hands don’t work well all the time. We get there today and I have to fill out another sheaf of papers. They explain their systems don’t always cooperate. No waiting and the nurse walks me back. She weighs me and says “You’re tiny!” High point of the visit. The last time anyone said that was my other college roommate after not seeing me for 30 years.
I have on the spectral leg and my cane aka walking stick. Doctor walks in with laptop. Tom flashes back but then sees he is using it to pull up records and take notes. He asks questions and asks about blood work. I don’t have any recent. I say I am here because my neurologist and friend say I have Raynaud’s. He squeezes my hand and says my self-diagnosis is correct. He doesn’t look at my feet. Nothing. I need blood work to see if anything else may be going on. I tell him that one of the reasons I chose him was that I understood he also practiced alternate medicine. He does and goes into an explanation of auricular medicine. Tom practically starts to levitate. We grew up differently. I have to be near death to take an Advil. He is one of 5 children and any drug is a good drug. Herbs are not doing it for him. Doctor says ‘Oh, you don’t like going to doctors?” That is not my issue. I go to the neurologist, gynecologist and eye doctor regularly. I explain about Hopkins and how I saw them in their formative years so, I can be wary. I get the scrip for the bloods, say goodbye and then doctor asks why I am using a cane? Cripes, I had to be helped onto the scale. We had discussed the MS diagnosis earlier in my 10 -15 minute visit.
Back to the drawing board, I need a rheumatologist.