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

 

Trained. Finding Help to Get Fit

fall-sneaker-food-Health MagazineWe are deep into that time of year where the whole world heads to the gym and starts seriously consuming green leafy vegetables. If you are me, this is usually accompanied by the purchase of new sneakers, vitamins, possibly a cute pair of leggings. All the things you finally need to get healthy….only wait. None of those things are going to do that for us, are they? I decided to investigate.

I have had success with a gym membership, but all I used were the treadmill, recumbent bike, and during a good stretch, the rowing machine. But I have always felt out of place there. Like people in tiny shirts were looking at me and thinking, “what is the girl in the jacket doing here?” And to be fair, I was thinking it too. The library is my natural element. A café or a bookstore is where I feel completely at home. Put me in a board room or a lecture hall and I am Zen. But not at the gym. I digress.

So I bought those new shoes and a snappy new jacket and off I went to the gym at my local community center. They have a big pool, sport courts, a gym, and personal trainers and as a bonus, they are a lot more affordable than a fitness club. This year I decided to get some one-on-one help and I hired a trainer.

Hiring a trainer felt like extreme extravagance on one hand, and like a vital necessity on the other. It had occurred to me recently that when I don’t know how to do something, I figure it out. I read about it. I ask people. I take a class. I never want to say I can’t do something without having a plan to learn it. And yet in all of this learning, it somehow had never occurred to me to do this for exercise. So I decided to change that.

This time, I decided to have someone teach me how to work out so I could feel at home as I got stronger. I emailed the fitness director and I let her know I had some limitations—and that they were inconsistent ones. I said “Lupus,” and I don’t always do that. I was excited and relived when she matched me with my trainer, Sam (not his real name). When he emailed me, he was quick to tell me that he had a close friend who also has Lupus. I took this as a great sign.

My starter session was like a game of chess as Sam put me through the paces of a regular training session all the while asking if I could lift weights (yes), to burpees (uh, no). We arrived at a plan and then I signed up for more sessions and away we went…

To manage the impact of the increased physical activity, I scheduled my sessions on Tuesdays and Thursdays late in the day. This way I had plenty of time to recover between sessions and I didn’t have to immediately head to work or another appointment afterwards if I didn’t feel up to it. I also limited the sessions to 30 minutes (plus a warm up). If this sounds short, it is. But it was just right!

Pretty quickly, I made some encouraging realizations. I am much stronger than I give myself credit for. I am also far more capable of serious exercise than I think I am. I have a tendency to be cautious. The safe route is not to ask too much of my aching knee. Not to ask my throbbing wrists to support my weight or to curl a hand weight. I assume taxing something that is already hurting is the wrong course of action and asking to really, seriously injure myself. For me, this was too cautious. My aches aren’t because of exercise or use. They are caused by a lack of sleep, a wave a stress, or a burgeoning sinus infection or cold kicking Lupus into action.

I pressed on though the general daily aches and pains, but I was careful not to over exert. It was good. I kept thinking of what I had read: exercise offers incremental gains in health and wellbeing and improves sleep quality. That motivated me.

Somewhere around my fourth session I hit my stride. Then Lupus hit me back. Once I start exercising, I want to keep going and going. That isn’t the right course of action for me. When I keep going, there is a tipping point that I quickly pass. In one minute I am feeling great—powerful, strong—and then in the next, my skin is warm, but I feel cold. I get a sort of pins and needles feeling on my head and face. This is how I know I have entered into lupus purgatory—that I am going to pay dearly for having done too much. I felt that pins and needles feeling during a workout and I knew I was going to pay for it, but I was encouraged by this message from Sam that night:

Wanted to reach out and tell you great job today by pushing thru the high pain day. Days like this will make low pain days easy to manage. Hopefully the foam roller worked, and please try and do those stretches that we went over today every morning. Remember 30 seconds each stretch. Happy Friday!

 A couple of sessions later I called to cancel on a day that I was really tired and Sam convinced me to come in anyway, promising to keep it low-key and for the most part, he did. When he asked me to kneel on one knee and use an elaborate exercise band I did it twice before having to speak up and tell him I was in agony. He pushed back, telling me to just do a few more. I almost did, but quickly grew a spine and declined again. I went home and slept for hours. Not ideal, but no harm done. And there is the satisfaction of having done something good—the goal is to exercise more, right? I emailed Sam and told him again that I would never try to get out of doing something I could do or pushing as hard as I could push, but when I cry uncle, we have to stop.

Then the dominos began to fall.

My eyes got really dry and when I contact tore while I was wearing it; it wasn’t long before I had an eye infection. I went to a session in my glasses, which made me grumpy. But I went.

I was pep talking myself for a full day in advance of my next session. I knew I was aching and tired, but I wanted to keep pushing through. That morning, I cancelled the afternoon session.  I got an email reply from Sam:

Hi, I understand there are last minute situations that arise but normally those are emergency situations. Last minute cancellations must be done 24 hours in advance. Below is the policy explained.

(The) Community Center policy: In accordance with our policy, the 24 hour cancelation (sic)will be strictly enforced and sessions will be forfeited for last minute cancelations (sic) with the exception of a true emergency.

When we first started our workouts I explained I do not like to charge people for canceling and would rather have a reschedule. If you cannot reschedule this would be considered a cancellation within 24 hours. How would you like to proceed?

I was feeling bad inside and out. This is where I have no grace about having Lupus. None. I spend a few minutes feeling faulty and wishing I was invincible like everyone else. Then logic kicks in and I remember that no one is invincible. Then I get mad. Does this trainer think I WANT to have to tell him I can’t do this today? This day I was snarky and took it out on him in an email:

Sam-Before we started I explained my health issue. I don’t always know 24 hours in advance to cancel. When I can’t, I can’t. If policy dictates that you have to charge me, for the session, I understand. Just let me know.  I’ve really come to enjoy our sessions. I don’t want to miss them. I think I may be coming to the end of my package anyway. Sorry for the inconvenience.

Only I wasn’t sorry. I was sullen and sulky. When Sam had the audacity to ask me if I had to reschedule because I wasn’t feeling well, or because of the holidays, I snapped at him. No. I wasn’t ducking out of the gym to eat Christmas cookies and sip champagne. I get short tempered when I am in pain. If I am in a ton of pain, I shut the bedroom door and stay out of everyone’s way. When I am in a little bit of pain, no one would ever know it (except my mom, who is like a clairvoyant in this. She can tell by the sound of my voice over the phone. It amazes me every time). When I am in more than a little pain, but not so much that I need to stop my day, I can be like an exposed wire. I responded to Sam feeling like that. Imagine this email in the tone of a bratty teenager:  

I hate telling people I don’t feel well. That’s why I didn’t. I’ve probably talked to you more about how I’m feeling more than anyone outside of a doctor’s office. It’s not because of the holidays. I’m having a flare. I can barely hobble around today. Coming in would have been futile. I’m not sure how long flares last but if I don’t stop what I’m doing and rest it will get worse and worse. Sorry to be such a pain.

He didn’t charge me for the session and said he hoped I was ready for a good work out the next time we met. I want to tell you here that I kept going, but I didn’t. I cancelled my training sessions by sending Sam this email:

I don’t think I am going to continue with personal training. I can’t reliably know when I am going to get sick and then I can’t tell you for sure when I am going to feel better. I feel terrible when I can’t make it in and then that makes me feel even worse. I don’t want to waste your time. I think you are terrific and I know you can spend it helping someone get fit. Happy New Year.

I was really careful to plan according to what I could plan for, but you can’t plan to accommodate Lupus—at least not all the time.  I underestimated this or at very least hoped that it wasn’t true and as a result, I am feeling down about it. Fortunately, my class starts next week. And I have these new shoes and cute jacket. Plus I am just a little bit stronger than I was before. Fingers crossed. I will keep you posted.

 

Click these links to fitness done right, despite Lupus: 

Lupus Foundation of American offers Q&A on Staying Active 

The Mayo Clinic Talks Exercise and Chronic Conditions

 

 

 

Letting Life with Lupus Out of the Bag

Here I am, the face of people living life (and doing pretty well) with Lupus.

Here I am, the face of people living life (and doing pretty well) with Lupus.

Well folks, I told the whole world that I have Lupus today.

New Republic Magazine just posted an article that tells the story of how I was able to start my own business and live a healthy happy life because of Obama Care gave me the option of buying my own insurance coverage. Here is how it all unfolded…

In January, I wrote a letter to the President. It was mainly to thank him for pursuing the Affordable Care Act (ACA, or “Obama Care”) even though the fight was hard.

So, I sent my letter and a short time later, I was talking to the Deputy Press Secretary at the White House, and then, Jonathan Cohn from New Republic. Over a few weeks I told him about how Lupus impacts my life, and how having “Obama Care” options instead of using COBRA, I was saving hundreds of dollars a month on healthcare. And this is above and beyond the fact that I couldn’t even buy individual coverage before this law as passed because Lupus is a preexisting condition. I had a moment’s hesitation about being a part of this story, but I felt strongly about it, and I believe that we need to speak out when things matter.  So, I spoke.

The article by Jonathan Cohn,  “How Obamacare is Slashing those COBRA Premiums”, was posted to the New Republic website today.

I am feeling a bit vulnerable about this—I am a pretty private person–my friend Laurel always jokes that I feel vulnerable when someone asks me my middle name (note: I did not share my middle name here). I had a knot in my stomach that being a part of this story and sharing my illness with the world would be a career limiting decision, but I am hoping people get the message: there is no impact to my clients now, because they aren’t responsible for my healthcare coverage, and managing my own schedule (more or less) means I am, in fact, healthy.

Either way, I had to wave my flag and tell my story. The Affordable Care act gives me the flexibility to pursue the life I want. What is more American than that?

So, here is the letter I wrote to the President.

January 6, 2014

Dear Mr. President,

In 2008 I was diagnosed with the autoimmune disease, Lupus. It took five years of medical tests to get this diagnosis. It takes a team of doctors, several prescription drugs and constant vigilance on my part to remain healthy enough to get through days and embrace life. Before the Affordable Healthcare Act became law lupus disqualified me from getting healthcare coverage, unless it was through an employer. This letter is not about my illness—it is to say thank you to you for taking on healthcare and for continuing under fire to keep it from slipping away. When I called the HealthCare.gov 800 number the operator let me know my online application had been deleted from the system. She took fifteen minutes to walk me through the process again. It was that simple. When she offered me options for health coverage I chose one. The operator said I was “all set.” I was almost in tears when she clarified that I just needed to pay my premium I was covered. And at a level and premium I could afford.

In July I started my own business, and I was only able to do that because of the Affordable Healthcare Act. To make this happen I had to take a leap of faith; I had to pay for COBRA coverage from my last employer for six months and believe in the promise of “Obama Care.” This month, that leap paid off through the new healthcare plan I was able to find though the exchange and purchase through Kaiser Permanente. Until this point, Lupus disqualified me from getting healthcare coverage, unless it was through an employer. My new plan will provide better coverage and will save me $200 per month. Having it also gives me the peace of mind that my healthcare coverage follows me despite my chronic illness. It has freed me to start my own business that creates the lifestyle that keeps me healthy and working—and not disabled.

I take every opportunity to tell people in my life what the Affordable Health Care Law has done for me and to dispel any misconceptions. I think there needs to be more talk about the option of calling the healthcare.gov 800 number when the website is criticized. If there is a need to share a positive experience with the exchange and the law, please use my story any way that it can be helpful. I hope the depth of my thanks multiplied by the many lives that this law impacted will give you even more inspiration to carry on the work you are doing.

With Deep Respect & Profound Gratitude,

And you can click here to read the article at New Republic magazine.

I hope you are having a healthy, empowered day… and that you will leave a comment and let me know what you think.

Donielle

 

 

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)

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.