Good Day! Sunshine!

Good Day Sunshine!

sunshineI 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)

Stand Up for Yourself.

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.

Standing up. We all have to do it.

Standing up. We all have to do it.

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

“The North Carolina union organizer who was the inspiration for the movie “Norma Rae” died on Friday of brain cancer after a battle with her insurance company, which delayed her treatment.”
Health Insurance. That is another post for another day. 

3 Days Until the Steroids are Over & Life Can Begin Anew

They'll be back...but hopefully not too soon.

They’ll be back…but hopefully not too soon.

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.