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

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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

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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

 

 

 

More Than the Sum of our Parts

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Sometimes I like to think of my immune system as a totally souped up race car (with inflammation stripes down the side, of course). It burns out fast, but man it is impressive while it is going. Other times I think of it as complete bodily anarchy with my cells alternately giving up and staging mutiny complete with tiny torches and microscopic pitchforks. Have a vivid imagination. In either case, this stems from the knowledge that as Lupus sufferers, we are carrying around an internal conflict and for every one of us, it is different.

Results of a study about how we think of Lupus and why it matters were released in May. I downloaded the study and it made me want to contact Dr. Joan T. Merrill, the lead researcher, who as described as having  ” actively wrestling with complicated treatment decisions for patients with SLE in Oklahoma.” She is wrestling with it; which means she is really thinking about it and making decisions for each patient. Three cheers for engaged doctors and researchers. They are the ones to make all of the difference. The study comes to this rational, logical conclusion (if scientists come to conclusions, I am never sure on that):

“Not all patients who share a certain organ involvement are going to be optimally treated with the same medicine at the same dose.  Some may need a combination of treatments; others may not need so much.  A better understanding of those variables can be made, in part, by an improved classification of lupus. This would allow better results for more patients and avoid unnecessary toxic combination therapies for others. This is exactly where the field of lupus needs to go. Thinking of lupus as a subset of arthritis isn’t going to get us there. The time has come for a more rational approach to selection of therapy than treating lupus by the organ.

from: Nature Reviews Rheumatology, 11, 385–386, (2015) doi:10.1038/nrrheum.2015.61, Published online, 05 May 2015

We are all different and we all have to be treated that way–even when we have the same symptoms. Rather than treating our skin separately from our kidneys, and looking at our lungs in isolation from our hearts, the study suggests looking a whole patient. The single person in the blue paper robe on the table in front of each doctor. It is inefficient. It will mean research is slower-going, but the right thing to do is to treat the patient not the collection of symptoms. Having been called “the skin lesion in room six,” I am elated to be thought of as a whole person. This recommendation makes me happy from my head to my toes and everything in between.

If you are as interested in Dr. Merrill as I am, the Lupus Foundation has an audio interview with her here. She is their medical director!

Tracking Lupus from Both Sides of the Stethoscope

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I was surfing Facebook this morning and I came upon a posted video from Lupus Foundation of America (LFA) called:

LFA-Real(tm) System is First-of-its-Kind Tool to Monitor Disease Activity

This caught my attention because this is more than a tool for physicians. The system has two parts:

  • A doctor’s assessment of a patient’s lupus disease activity.
  • A patient’s assessment of their lupus disease activity.

The idea is that the assessment on both sides of the stethoscope can be done quickly–and it can track disease over time.

I have had two experiences with tracking and assessment, and to be honest friends, they have kept me from going to the doctor for a couple of months now.

When I discovered a symptom tracker called Symple, which allowed me to track my daily symptoms and also the factors that might cause them (lack of sleep, vitamins, stress, etc.) I was elated. I tracked faithfully every day for more than a month. When I met with my rheumatologist, I showed her my data, explained the app in three sentences or less and offered to email the report Symple created from my tracking. She could not have cared less. She barely glanced at the screen. That was the end of the story. I was crestfallen because I thought this was awesome. In my 20 minute office visit, I can’t convey all of the pain and suffering over a month, three months, six months. And if I could I am CERTAIN it would sound worse than I want it to. The app, however is an honest, accurate assessment over the course of many days. This body of data takes into account the good and the bad days, and what is influencing them.My doctor didn’t see it that way. I don’t feel understood. I feel prescribed to. You can check out Symple by clicking here. And by the way, it is free.

Not too long ago I got really sick in a weird, Lupus sort of way. I had stomach problems, I was achy and miserable. I knew I didn’t have the flu. I suffered for a while and then out of nowhere I got hives. This is my Lupus nemesis. I spent years suffering from hives and sinus infections before I was diagnosed. It was awful. Once I was diagnosed and I started taking Plaquenil, the hives went away completely–for years and years. Until that day. I decided to go to see my primary care physician–in case it was the flu or something. I got a doctor filling in for mine and she was great. She listened. She was informative, she ordered a TON of blood work. A week later, when it all came back normal. I talked with her about it. I was still feeling miserable and my legs were covered in hives and here she was saying: all your blood work is normal.

As a lupus patient, this is something I struggle with. I want an actionable answer at all times. And you know what, there isn’t always an action to take.

Oh I'm sorry. Did it look like I zoned out? I was just picking out a wall to bang my head on.

Oh I’m sorry. Did it look like I zoned out? I was just picking out a wall to bang my head on.

I said thank you to the doctor and said, “I guess there is nothing left to say–I feel miserable, but according to my blood work, I am totally fine.” She stopped me there by saying: “No. You have Lupus. It doesn’t mean you aren’t experiencing symptoms.”  I am sure I sat there staring at her for a moment as I imagined repeatedly banging my head against a wall. That was my last visit. I have no plan to go back to either doctor unless something awful befalls me, because seriously, what is the point?  What is to be gained? Other than massive medical bills and more frustration (which leads to more symptoms).

Maybe LFA-Real will make a difference in this. If they can track what is a flare and what is a chronic symptom from a patient and match that with a physician’s observations and the test data?  I am skeptical, but hopeful.

This is in the beginning stages, like just about everything with Lupus, but the system is free and open to use for everyone (Thanks, LFA).  This System, which includes the development of the tools used to assess, and lots of input from patients and professionals alike, will be unveiled this year and you can watch the video by clicking here.

Letting Life with Lupus Out of the Bag

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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

 

 

The Liebster Award & Eleven Great Blogs I Love

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lieber-award

 

InTheLupus.org has been nominated for the Liebster award. Woo Hoo!

That means someone is reading my blog—and they like it! I am happy (and relieved). Seriously though, it feels great to be acknowledged by others—especially ones who have such great blogs.

The Liebster Award is All About Sharing–facts about me, questions my nominator posed and also, other blogs that I think are great! Visit them, won’t you?

This is an award that is nominated by bloggers for other bloggers to help people build their followers base. I was nominated by Jessie at Nitya Nata. Go visit her site and marvel at her insight!!

11 Facts about Me:

  1. I have Lupus. Phew. Now that that is out of the way….
  2. I consider myself a really private person—and here I am telling anyone who wants to read it J
  3. My home is my sanctuary. There is a calm peacefulness there that I cultivate and that I crave when I am away.
  4. I have an extreme case of wanderlust. I love to travel and adventure be it near or far.
  5. I have two brothers that I think the world of. Both of them have influenced the way I see others and the way I interact with the world. They are also extremely funny J
  6. I have kept a journal since elementary school—which isn’t so unique. About two years ago I decided to part with some of them, which feels like a major accomplishment for a memory collector like me.
  7. I want a puppy. Actually, I want two, but I would settle for one.
  8. I despise blazers. Even the word “blazer” makes me itchy and uncomfortable.
  9. I have completely changed careers twice in my young(ish) life and I plan to do it at least one more time.
  10. I have a soft voice and a big smile. I use both often.
  11. I believe in the power of the pen (or the keystroke). My new year’s resolution this year was to write something to release into the world at least once a month this year. SO far, so good.

11 Questions for Me from Jessie at Nitya Nata

  1.       What do you imagine your spirit totem animal is and why?

Hm. I have been thinking hard about this one. If you would have asked me last week, I would have said a dog because I am fiercely loyal and protective of the ones I love. But l read the Buddhist quote below, and upon deep consideration, elephant fits like a glove. They have long memories, deep connections, they never forget anyone (good or bad), and sometimes they like wandering alone.

“But if you do not find an intelligent companion, a wise and well-behaved person going the same way as yourself, then go on your way alone, like a king abandoning a conquered kingdom, or without cares like a great elephant in the deep forest.” (Dhammapada)  

 

2.      If your life had a theme song what would it be?

Who are the People in your Neighborhood from Sesame Street. It has been my theme song since I could sing. Long before I could express my deep love of civics and communities, I sang along with glee about “the people that you meet when you’re walking down the street each day…”

 

3.      If you could cast someone to play you in a film remake of your life, who would it be?

Lauren Graham (Lorelai from Gilmore Girls). She is a feisty brunette with a whip smart sense of humor and an endless host of pop culture knowledge, like me. Come to think of it, maybe I would try to convince Amy Palladino, the show’s creator and writer, to take the role instead.

 

4.      What is your hidden talent that you would share if you could?

Few people know this, but I know all the words to the Swedish Chef song (from the Muppet Show). My mom taught it to me. I don’t get to sing it enough. Seriously though, I make it a point to share my skills and talents with people. My thought is, if I have something that can help someone else, I need to share it.

 

5.      What is your biggest fear?

Deep ocean water; I always scare the bejesus out of myself thinking about what I can’t see under the water and how gigantic it could be. And more practically, I am always afraid of Lupus looming over my future. I don’t like the idea of not being able to completely take care of myself.

 

6.      Why do you blog?

Started InTheLupus.org because with a disease like Lupus, there are so many clinical unknowns, but the more you talk with people who have Lupus, the more you realize that we have a lot of shared symptoms and shared experiences. It took me a little while to find my voice with Lupus. When I was initially diagnosed, I couldn’t find someone like me to read along with, so I decided to be that person for other people so that we can all be smarter, healthier, and more encouraged together.

 

7.      How do you think others see you? How would you like others to see you?

I think others see me as serious and having my act together in all instances, which of course is patently untrue. I just have an exceedingly calm exterior and a very prim strand of pearls. I would like people to see me as strong, smart, and kind.

 

8.      If you met yourself at a party, do you think you would be instant friends, or it would take time to get to know you? I would like to think so!

 

9.      Who would you most like to meet, alive or dead, from any time?

Margaret Mead. I identify with her as the ever vigilant observer and her belief in the power of people to make change in the world.

 

10.    What is your favourite thing to eat and drink?

My favorite thing is a hot cup of earl grey and a crisp little madeleine. It is instant comfort and so tasty.

  1. What is the next big thing you want to achieve in your life?

I want to make some sort of impact on the Lupus community—I am not sure what that will take the form of yet, but I am working on it. I am also hard at work on a degree; circumstances got in the way when I was college age, so here I am back at it.

 

Eleven Outstanding Blogs I  Want to Nominate:

  1. Triumphant Wings  because of the generosity of knowledge that the author exudes.
  2.  My Experience With Lupus-because the writing is good—and the tags are better (I was so happy to see among them Work Sucks and WahWah). And also because she is brave enough to talk about the hard stuff, like love, and children and the personal aspects of life with Lupus.
  3. Lupie Thoughts- because of the succinct way the cartoons and little quotes talk about life with Lupus.
  4. Waltzing with Whims, because of this line: “I hate being sick, I hate needing help and I hate having to ask for it. Yet I live with lupus, which means I am sick and need help and thus must ask for it.” Amen, sister.
  5. Lupuslifeblog.com/ because she too measures treatment days in vials.
  6. And this tough cookie: alleemaeauthor
  7. Gallivance quenches my wanderlust.
  8. Heartkindling is a renaissance blog. I like that there are hectic head and hectic hands categories 🙂
  9. Sunnysleevez sun protective clothing that looks cool. This makes me so happy
  10. Saramzak – This blog features the artwork of the sublimely talented Sara M. Zak.
  11. thebarefootbaker You can almost smell the goodness baking while you read!

And a bonus mention: unhurriedchristmas This is my other blog, and I love it.

 

Here are the Liebster Award Rules:

The Liebster Award is awarded to bloggers with under 200 followers to try to promote their blog a little and also bring together a community of bloggers. The rules of the competition are as follows:

•The nominated user must provide a link back to the person who nominated them.
•Provide 11 facts about yourself.
•Answer 11 questions sent by the person who nominated you.
•Choose 11 more people and ask them 11 questions.