Keeping an Eye on Plaquenil

I really like my eyes. I don’t mean their shade or their shape, or their outstanding ability to bat eyelashes or convey emotion. I mean my actual eyes and their magnificent way of letting me experience the world. It’s because of this love that I am always a little extra concerned about taking Plaquenil to treat Lupus.

Plaquenil was the first and for a long time the only drug used to manage Lupus. As I understand it, it is what stands in the way of my condition progressing to more serious organ involvement. It is an important tool in the fight against Lupus, but using it does not come without risk. Over the course of time, Plaquenil can become toxic and damage the retina. If it is unmonitored, it can leave vision impaired, or even cause blindness.  I would like to keep my eyes functioning as long as possible. I am not sure what my quality of life would be like if I had, say,  a healthy liver and no eyesight. I would prefer not to find out.

photo

Jeepers Creepers, this is a mighty close look at my peepers.

Right after I was diagnosed, my (super fantastic) dermatologist sent me to the pharmacy to pick up Plaquenil and to an ophthalmologist for a visual field test. I was armed with a note for the ophthalmologist written on a prescription pad. It said: Ask her about her diagnosis story. Its good.

Within five minutes of handing that note over to the ophthalmologist, I learned that she too has Lupus. We did that thing that people with Lupus do when they meet: Do you have…?  Have you ever taken…?  What do you think about…? Right after that, I learned that she doesn’t take any medication to manage her condition. As soon as that left her mouth, she tried to grab it back. She even told me a cautionary tale about a woman she went to medical school with who also didn’t take any management drugs for Lupus and so she died at 30 (sidebar: I have a host of stories people have told me about Lupus over the years that can be summed up with: “it was awful and she died.” People are really thoughtful.). What her concern boiled down to was masking symptoms rather than treating the disease. However, dealing with symptoms is all we can do, at least for now.

Which brings me back to Plaquenil. Have you heard that there are new guidelines for dosing it?  I was surprised to learn that the dosage should be based on ideal weight for a person’s height—not their actual weight. For me, this means I am taking more than I should be taking according to the new dosing.  I am not sure about you, but prednisone, Plaquenil’s Lupus-treating bedfellow, can swing my weight tens of pounds before I can blink, so having dosages not tied to actual current weight is good news. It simplifies things; or at least it should, once I talk to my doctor about it.

You might be thinking: “Look, In The Lupus lady, you should just trust your doctor to dispense appropriate medication.”  If I heard you saying that, I would think that you either don’t have Lupus (or another tricky autoimmune disease), or you have one outstanding medical team.  Either way, good for you!  For the rest of us trudging through this achy maze, the need to share information on experiences and diagnosis and treatment. I offer up what I find to you (and your doctor) because part of having a disease that is a mystery is some responsibility to educate people—even our physicians.

Of course, once we learn something new, the first thing to do is to discuss with your rheumatologist before making any changes so you can make a plan. Part of that plan should be reminding our ophthalmologists that Plaquenil is toxic and should be monitored.

For your consideration, and discussion with your doctor, the new recommended dosage is no more than 6.5 mg/kg/day, using the standard known as “ideal weight,” which factors in height. For women, the ideal weight is 100 lbs for 5 feet, plus five lbs per extra inch of height. For men it is only slightly higher at 110 lbs for 5 feet, plus five lbs per extra inch of height. Currently, the average dose of Plaquenil is 200 mg. twice a day.

You can read the source documents about the new Plaquenil dosing guidelines for yourself by clicking here.

You can also see what other Lupus bloggers are saying about Plaquenil and vision here: One outstanding Lupus blogger tells all about her Electroretinography, or ERG. An advanced test that measures retinal changes and health. This is especially important for people on Plaquenil. In case you are squeamish, I will warn you in advance, there are pictures. Visit, Despite Lupus to read more.

When you’re done reading, get your vision tested by a specialist, talk to your doctor about the new dosing guidelines.

Be well.

In the Lupus

PS—in writing this blog post, I have taught my computer the word “Plaquenil.” Ugh.

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

 

 

The Liebster Award & Eleven Great Blogs I Love

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.

In May, We Wear Purple.. Happy Lupus Awareness Month

How much do I want this tee shirt?

98.5 KLUC Las Vegas

In the month of May, the color purple and butterflies have a special meaning. Those two items are the international symbols for individuals living with Lupus. This disease is really close to my heart and I thought I would share with you why. Do you know what Lupus is about?

Lupus is a chronic lifelong autoimmune disease that causes inflammation and tissue damage to virtually every soft tissue and organ system in the body. It affects the skin, joints, blood cells, blood vessels, heart, lungs, kidneys, brain, eyes, gums and nerves. It’s difficult to get diagnosed with Lupus because it hides behind many other painful symptoms. There is one symptom that is universal in the Lupus world, and that is the “butterfly rash.” A red rash appears on top of the bridge of the nose and spreads under the eye sockets, giving it the shape of a butterfly on…

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Dental Surgery: I just popped a piece of gum in my mouth and weeks later, here I am.

Sorry for the absence, but I just popped a piece of gum in my mouth and weeks later, here I am.

Ten years ago I had a crown put on one of my molars. Three weeks ago, I decided to have a piece of gum rather than have a snack–one chew and out the came the crown. A trip to the dentist ended up in an appointment for surgery to have the tooth beneath the crown completely removed and a bone graft to eventually place an implant.

I should have known not to eat the gum. I am pretty sure it was my childhood love of grape Bubblicious that got me here in the first place.

So, surgery was no fun. In retrospect, there are some things I did well that made the situation better—and there are some things I could have done better. I am sharing them here in case they could help you too.

The Three Things that Made Things Better

I know there is no conclusive research on Lupus affecting dental health, but I suspect it does.

I know there is no conclusive research on Lupus affecting dental health, but I suspect it does 

3. Arnica gel and tablets. It is becoming something of an epidemic—Doctors and phlebotomists can’t find my veins to take blood or put in an IV. This was a particularly bad instance—five tries between both arms before they hit the kind of blood flow they wanted. I am thinking that people are a little too impatient—because a few hours later, I am a mess of redness, aching in pain and then for days after covered in bruises. Nothing makes me less indignant about the bruises or the pokes, but in the aftermath, applying Arnica gel (I get mine at Whole Foods) makes the bruises dissipate quickly—which is good because the more I look at them, the more upset I get about having them.

2. Speaking up. I am pretty proud of myself for this one, even though it had mixed results. I made sure everyone knew I had Lupus. I made sure to tell them that the tourniquet was too tight (that took a plea to two people to fix) and I did not sit in the chair until I had eye contact with the doctor while I explained my track record with amoxicillin. I was also pretty clear that the little disc they used to try to warm me up (so they could take blood) was way too hot. You win some, and you lose some.  However, if you are a medical professional and you find yourself saying, “Let me know if this is too hot. I have gloves on, so I have no idea.” Just know that it is in fact too hot. I had three burn marks—on top of having bruises.

1. My boyfriend. Seriously, I couldn’t have gotten home, let alone gotten through this without him. After surgery, I remember giving the receptionist my credit card (ouch). I remember the car pulling out into traffic, and then I remember waking up at home three hours later. I am really, really bad at asking for help, and he has admitted to not liking the responsibility of being the caretaker. But I asked and he answered. He made sure I drank water, took medicine, and when I finally woke up and rejoined society, had plenty of soup to eat. If you are reading this hun, high-five for us!

Three Things I Should Have Done Differently:

3. Told my doctor. Well, if I felt like I had a doctor. I am currently a woman without care—but more on that later. I am switching insurance—because the two Kaiser rheumatologists on staff in my area aren’t going to cut it. So I didn’t really have a rheumatologist to tell, but once I do, I am going to be better about this. I think it will save me lots of pain in the long run.

2. Planned more down time. I am not sure if I can completely blame this on Lupus, or if it is just getting older—but really, I thought I would have surgery on Friday and be well enough to go into the office on Monday. While I did actually go in to the office, I wasn’t really well enough to do it. In fact, it has been 9 days since surgery and I am still not 100%.

1. And the most important thing I could have done differently, was to have read this article from the Lupus Foundation about preparing for surgery. I didn’t think that this “surgery” was real surgery. Here is the link: http://www.lupus.org/blog/entry/how-to-prepare-for-surgery-when-you-have-lupus

 

If you’re doing something that I could learn from, please post it. Until research catches up, sharing what we are feeling seems like the best way to suffer less at the hands of Lupus.

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)