So where were we? A mysterious rash at the end of summer….
That best friend I mentioned, calling out to me from across the parking lot was among a slew of great coworkers that I had at the time. We worked and played together and we looked out for one another. So, when our accountant sent out an email about something called Inflammatory breast cancer, a lot of the women in the office marched to the doctor. I was one of them. It had been months and I still had the red, sometimes, pink, other times purple spot on my arm long after the sunburn and the summer faded. I didn’t know how many stops there would be on the road to a diagnosis, but here is how it went for me:
Stop one: My Primary Doctor. My primary, Dr. B, said the rash would probably go away, but I could see a dermatologist, if I wanted to. I imagine she was a little bit tired of me. For weeks I had been complaining of exhaustion and pain in my shoulders and knees. She told me it was likely stress.
Stop two: The Dermatologist. I should mention here that I wasn’t used to going to the doctor. Growing up I had a dinosaur of a GP. He had an office in his house and four generations of my family had seen him. While this was sure a time saver when it came to filling out the “family history” section of the intake forms, that was where the benefit of his care ended. With that doctor as my only frame of reference, I didn’t really rely on the medical community to cure what ailed me. For colds and such, I used my grandmother’s home remedies. I didn’t even take Tylenol for a headache. Going to a dermatologist in particular seemed kind of extravagant—like a totally unnecessary nicety for people who had the extra cash to spend on clearer skin.
So, the day I pulled into a dermatologist was jarring. I sat there in my car looking at the sign that said “specializing in the diagnosis of skin cancer.” Fortunately, it was freezing outside, so despite my reluctance, I went in. I left an hour later with a band-aid over a punch biopsy of the rash on my arm. A week later the biopsy results came back inconclusive. A week after that, the biopsy site wasn’t healing, so I went back. This time, I got the senior dermatologist at this office. She came in and said, “How would you like a nice thin scar that no one will notice, instead of what you have?” Translation: I am going to do another biopsy. This one required stitches and it didn’t heal either. I would have six scars on my arm by the time all of this biopsying was done. I ruefully call them my constellation of scars.
Dermie sent me for blood work and for a gene rearrangement study. I was convinced this was going to be the answer—I mean what could be more revealing than a look at my genes, right?
The dermatologist was stumped. So, she sent me to another dermatologist. One who was wise, in his eighties, and of whom she was in awe. Dermie talked about him like he was Yoda. “He is a master in his field,” she told me. He was older, didn’t use computers, and he didn’t have much bedside manner, but he has seen everything. “You should see him immediately.” I was scared, but this could be it right? I got my hopes up even higher.
Stop three: Wise Old Dermatologist. I brought my Mom for this one. This was another doctor in his home. He was retired, but took special cases (aw, man. I was a “special case”). Stepping into his office was like stepping back in time. It was like being on the set of a doctor’s office from the 60s. The secretary had an electric typewriter and a rotary phone. She told me that all correspondence happened by mail. When I met the doctor, Dr. S we’ll call him, he asked me endless questions and took detailed notes on index cards. He looked at my arm and sent me for more blood work. Later that week, I would get a call at work. “You need to get to Roswell Park Cancer Institute immediately for tests.” I was devastated.
Somehow I had gone from, “hey if you want to see a dermatologist, go for it, but it’s probably nothing, to a lot of use of the word “immediately,” and I was scared.
I broke down and told one of my coworkers what was going on and as I was pouring my heart out, my boss came over and told me to go home for the afternoon. My secret was out. I took the next day off and headed to the local cancer institute, where my journey really gained momentum.
This story gets better, I promise!
(to be continued)
Good Day Sunshine!
I was so happy not to wake up to dark grey skies and dreary, slushy rain. It was 27 degrees outside today, but the sun was out and I had the whole day off. I woke up singing, Good Day Sunshine! Click below so you can sing along too!
After the regular rigmarole of the morning routine, I headed out to the eye doctor (all clear on the Plaquenil retinal screening—hooray!) and then to the chiropractor (all popped and cracked back in alignment, three cheers!) and then I planned to go shopping for some new work clothes—I couldn’t put off buying black work pants any longer. I was driving and singing along with the radio for a little while when I realized I had a slight headache. Then my hands started to burn. All the sudden I was really, really tired. It always takes me a day or two to remember what happens when the sun shows up on the scene again each spring. Welcome back photo sensitivity.
The sun was the lead player in how I discovered I had Lupus. Of course, I had no idea at the time—nor did a slew of doctors and a pack of specialists or a host of tests.
I haven’t been able to put my hands on the pictures from that day. I took my younger brother to Six Flags with a bunch of friends and we spent the whole day in the beat-down, hot-as-it-gets-in-Western-New York sun.
Before that day I had never known a sunburn. My fair olive skin always gave way to a honey colored tan befitting my Southern Italian roots. From childhood, when I would sun worship my way through summer playing on our block or splashing in the pool, there was never a time when I shied away from a single ray.
Back to Six Flags. That was the first summer since I wore sleeveless tops since I was six or so. I think I am 32 there. My mother and I joked that this was just purely scandalous. She started calling me a Glory Girl (this has stuck). So I got a sun burn this day, which was novel to me. I was like, “Check this out—I think my skin is going to actually peel.” I was fascinated, a bit pink, and tired. Days past and the sun burn on my arms faded, except for that double thumbprint on my arm.
I wore the same shirt from the amusement park to work one day. From across the parking lot, my best friend shouted to me. laughing: “Do I need to rough up that husband of yours? Is he shaking you and leaving marks?” I was shocked for two reasons. One—the mark was still there and it was two weeks later, and two—it was noticeable from a fifty yards away. Still, I didn’t think enough of it to have it looked at. It was a bruise or something, right?
(to be continued)
I love that this is at least a little bit positive.
Take your Plaquenil. Your heart and lungs may thank you.
I don’t know what it is about me, but when I feel like the masses are being slighted, I feel compelled to take up their cause and fight. I call this my inner Norma Rae. Have you seen that movie from the late 70s? The one where Sally Field starts a revolution of the textile industry by standing up holding a big, bold sign that says “UNION” on it?
It was hard. It was unpopular. It causes trouble at home and at work. But it’s the right thing to do, so up she goes. Sign over her head. And that leads to a revolution. Or at least that is how it goes in the movies.
The last few days have been Norma Rae days for me. I am sure I didn’t start a revolution, but I am also sure that the doctor who got me so wound up will at least think of my face and hopefully my words the next time someone shows up swollen, aching, and desperate in the name of Lupus. I have heard of people having amazing relationships with their rheumatologists. The kind of doctors who head up collaborative care among doctors to get patients well and thriving. But hearing about it is where it ends for me. I have a stand out primary care doctor and the kind of dermatologist that you could trust your life to, but I have never had a rheumatologist to write home about. The one I started seeing recently though, simply takes the cake.
I started seeing my new rheumatologist a few months ago when I got a new health insurer. We didn’t totally hit it off, but it wasn’t too bad. She was stand offish and she made a sour face when I showed her the vasculitis on my arm, but I am sensitive about that, so I chalked it up to my thin skin (ha!). When I left her office that first day, she sent me for blood work. Fifteen vials of bloodwork that took four sticks, the last one in my hand (ouch) to get ahold of. I thought I was going to pass out from sheer exhaustion. After that, there was a host of small things (mis-dosed medication, another wasn’t available, I had a reaction to a new generic, and so on) that fell like disease dominos and landed me smack in the middle of a flare–the most painful one I have had to date.
I suffered for a few days before emailing my doctor. She put me on a TON of prednisone and said to keep in touch. I took the ton of prednisone and it was like a beast was unleashed. In addition to a racing heart, I was so dizzy I was losing my balance, I was exhausted but couldn’t sleep. AND I WAS A MEANIE. At the prompting of my poor, suffering boyfriend, I went back into see the doctor face to face.
This is where the UNION sign comes in.You see, I had already had low expectations for this doctor caring for me. But when she met my sick, sad self with a pile of pain pills, and “Well, that’s Lupus. Eventually the flare will be over and you’ll feel fine.” I kind of lost it. I asked her to consider that people are more than the sum of their symptoms and test results. I told her we weren’t working out (like we were dating or something), and I did all of this while hysterically crying. In my experience doctors aren’t huge fans of tears. They are a more tightly laced lot. My rheumatologist looked horrified, but all I could think to myself was, finally I am getting through to her. I eventually pulled myself together enough to finish the visit and head down for more blood work. I wasn’t done though because all of that went badly too.
I just finished my follow up email to her (this is how she prefers to communicate) and it reads like a ranty break up letter. Whether or not she even reads the damn thing, I had to say it all. I had to say it for every person who ever has to sit in a phlebotomy lab and get told, “You are a slow bleeder. I am going to have to stick you again.” I had to say it for every person who has had to sit down to dry their hair because showering took just about all of their energy. I wanted to say it for every person who didn’t have the strength to say it for themselves. I had to say it for everyone who has Lupus.
God save the world when my hands don’t hurt too much to type.
PS: From the “well ain’t that a kick in the head” files, I just found this article from a few years ago: Real ‘Norma Rae’ dies of cancer after insurer delayed treatment
Plans! I had such PLANS! It was going to be great. This blog–in the Lupus.org–isn’t that a great name? I picked a theme and a look (and I was not quick about it) and I decided that it would be two things:
1. Honest about what it is like for me to live with Lupus.
2. In The Lupus.org will be what it sounds like–a place to stay in the loop about what is happening with in the world of Lupus–from research to fundraising and every single thing in between.
Unfortunately, before I could get it all together and– abracadabra–make it a great site, Lupus struck me down. Hard.