Road Trip! or Exhausting Yourself Getting Somewhere so you Don’t Have the Energy to BE There.

Roosevelt Site

Standing at the visitor center of the Roosevelt Historical Site in cute, lightweight shoes

I just celebrated a milestone birthday and I embraced it like a child. I had three birthday cakes, a birthday pie, and a birthday helmet full of ice cream with rainbow sprinkles. I ran into the sunshine and the baseball games, and road trips, and hosting guests with reckless abandon–emphasis on the running and the reckless. It was wonderful.

There were only two days in the month of July that we did not have house guests to celebrate with.  It is so nice to wake up to friendly faces around your breakfast table. But those faces want to eat breakfast, which does not make itself, and they want to get out and make the most of their stay and getting out often means expending lots of energy, climbing flights of stairs, and facing the sun. All of this combined made it so that at the mid-point of the month I was flaring. My legs were swelling up (first time I have experienced this). It took me a little while to figure out how to enjoy a busy summer without my health suffering. I made some good decisions and some really bad ones in July. Here is what I came up with.

With summer comes sunshine. Getting out into the world in the summer time means coming face to face with my nemesis—the sun. If you look online, you can find me at a baseball game in the middle of the summer wearing jeans and a black shirt. This is insane right?  I can hear you saying: Why would you wear black?! The answer is simple: vanity. My brother and I planned to go to a  baseball game. My normal Lupus hack for baseball games is to simply go to them at night. A 7:05 p.m. start guarantees a cooler, UV-free experience. Unfortunately, the game time on the only day we could go was 4:05 p.m. I tried on four outfits to deal with this situation. A skirt went on and then off because I was afraid my legs would get too much sun. Jeans, I thought, would fix that. I needed a really light shirt to go with them so I didn’t over heat. I tried on one and then another. The lightest one was black, so on it went. And then I noticed that shirt didn’t quite cover the scars on my arm and I couldn’t have that. So I put on a light cardigan and cute necklace and hunted down my sandals. By that point, it was past time to leave. There was no time to consider that I was dressed for a brisk fall day, not five hours in the beat-down sun. Mid way through the game I went to the ladies room to assess the damage. My legs were bright red even under my jeans. I knew I had gone too far and it wasn’t the first time that week. Even under coats and coats of sunscreen, I spent more time in the sun the first week of July than I had the rest of the year up to that point.

Damage was done, but did I stop there? Nope. I also spent an hour or two paddle boating the next day.

By week two, I was sleeping in until 10:30 every day and falling dead asleep for the night by 9:00 p.m. I didn’t do anything active because I couldn’t. The stairs between my bedroom and kitchen were a trial. I was secretly relieved when our guest left a day early. I slept the entire day and in the evening, I changed sheets in the guest room and got ready for my mom’s arrival.

Stairway to Exhaustion. Week three was full of activity. My mom came to visit and to pet sit my puppy while I hit the road bright and early on a trip my sweet boyfriend planned. Every stop was a surprise. We stopped at a snack factory in PA, and then continued on to Greenwich, Connecticut, where we boarded a train for Yankee Stadium night game!

I was so excited…until I reached the first of many stony obstacles. The train station is flight after flight after flight of steep concrete stairs. I wanted to cry. This was probably more because my energy level was already low, but I knew I would be useless if I had to climb all of those stairs and then climb them again on the way home. I am not tall. Even if I didn’t have lupus, I would still have to walk faster than the people I am with to keep up, now add Lupus. In the moment I was too tired to deconstruct why this was so overwhelming. My knees hurt. Stairs and knees are not friends–at least not my knees. I couldn’t walk and dread and be rushed to meet the train and formulate words to say why I was…sad? tired? Lupus-y? I couldn’t even think. It’s so frustrating when you exhaust yourself getting somewhere, and then you don’t have the energy to BE there.  Mid way through I stomped my feet and made T stop and consider my plight. I can’t rush and climb the stairs and still participate in the destination. I can do one of those. We took ten minutes and found the elevators and we still made the trains. The game was a lot of fun. The weather was cool and breezy as we watched my favorite team win and my personalized “happy birthday” on the jumbo tron.

We had one more stop on this road trip; Hyde Park and the Franklin Roosevelt Presidential Library. This is a historical site that I always wanted to visit. It was an enlightening, empowering stop – and it completely had to do with moving through the world with different abilities. I will be sharing more about this in another post. For now, here is what helped me really enjoy my trip.

Here is a list of the things I needed to enjoy a summer trip:

SunscreenSunscreen. I am tired of reading about the value of sunscreen for managing Lupus and I bet you are too. So I will leave it at this: Use it. Reapply often. I use this solid sunscreen from Neutrogena to make absolutely sure I cover the rash on my face and the scars on my arm.

Hats. Oh the hats. There was a baseball hat at Yankee stadium, a straw hat with a bow (a la Anne of Green Gables), a cream hat with red and blue stripes for Independence Day, and a pretty red number that makes me feel like a sexy spy on vacation. There was also a garish leopard print hat with wide brim that I bought for $2 at a craft store on the way to a winery after I forgot and left all of these hats behind. For this reason I have now added a hat to my emergency car stuff (you know the stuff–jumper cables, windshield washer fluid, flares, sunscreen and now a permanent hat).

Long Dresses, Sleeves, and Pants. Not jeans and a black sweater, but long sleeve linen shirts and pants. Cool cotton dresses that sweep the floor. It helps.

Closer Parking Spaces and Fewer Staircases. File this under obvious tips and tricks for living like you don’t have an autoimmune disease. When you are driving, you can choose to park close to where you need to go and take the elevator rather than the stairs. With that you can reserve more energy to do what you intended to do, rather than spending all of your energy getting where you are going. When you are not the driver or the decider, stand strong and be vocal. Even when the crowd is taking the stairs, even when it takes a few extra minutes to find a closer parking spot.  It is a pain sometimes, but it benefits the whole group—do these things and you can enjoy the outing like everyone else.

Vitamin D. It makes a difference. My brilliant dermatologist has explained how vitamin D makes a difference for those with Lupus. For everyone, cells die and turn over all constantly (even more die when we do silly things like getting sunburned). As a rule, Lupus makes it so our bodies don’t efficiently get rid of dead cells. Vitamin D helps us more efficiently clean out the dead cells. When taken in appropriately high doses, it makes a major difference in how I feel—it is worth discussing with your doctor.

The Right Shoes. Finding the right shoes is critical—they have to be light and offer the right support for the activity, but they also have to be cute. I am not ready to give up the cuteness. That would be admitting defeat to Lupus. I am never going to be that sick, unless I am actively dying.

Madden Girl Kissesss Flat Sandal

Madden Girl Kissesss Sandal. Yes, that is really the name. 

The shoes that fit the bill this trip were pink Steve Madden flat sandals and super lightweight black leather ankle strap sandals from a company called Spring Step. Both pairs weigh nothing, they stay on even when you are moving fast and they are adorable. The black ones make my heart sing. The inside is a pale gold and the perforated leather keeps you cool even when it is 100 degrees outside. Note: they run a tiny bit big. Here is a link to where I got mine: Spring Step Lada Wedge. Both companies reliably make lightweight comfortable, cute shoes.

Spring Step Lada Sandal

The perfect shoe for the trip: Spring Step’s Lada Sandal

It helps to have the right places to visit.  Add these to the totally Lupus-Friendly Places to Visit on the East Coast of the U.S (click the name of the site for more information):

Herr’s Snack Factory. The tour is free, but you need to make a reservation. The best part was seeing thousands of perfect pretzels roll by. It looked like snack food wallpaper. Take the tour, taste chips right off the line, see little kids mystified by the hoppers and conveyors and workers. King of Prussia, Pennsylvania. 

 Hershey Park Chocolate World. The noise level will deafen you. I also recommend avoiding the whole retail area; it was pure chaos on a sugar high. But it is one level and there are lots of activities that anyone can easily take part in—from history tours on buses with UV shielded glass to making a chocolate bar in air-conditioned comfort. PLUS you get to see your friends and family in hair and beard nets. Hershey World is separate from the amusement park. It has its own easy to access, free parking. Hershey, PA 

The Home of Franklin D. Roosevelt.  Appreciate how a man who was paralyzed in adulthood moved through the world and commanded a country during its darkest days. Park at the visitors center. Walk the short distance to the Presidential Library (it is so big you can take a whole day there). Take the tram to Springwood, the president’s family estate, or Val-Kil, his wife’s retreat.  Plan to spend some time reflecting at Top Cottage–a small space FDR designed so he could be completely self-sufficient from his wheelchair. Before ADA, he made doors open in both directions, eliminated floor seams in doorways, and had a toaster in the living room so he could serve tea and toast to guests on the porch (when it was too early to serve martinis). Hyde Park, NY

 

A Constellation of Scars

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.

I have a constellation of scars on my arm. I am one scar short of the big dipper.

I have a constellation of scars on my arm. I am one scar short of the big dipper.

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?

Wrong.

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!

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)