Lupus

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!

Pancreas and Spleen Unremarkable: Knowing Yourself Inside and Out

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Ladies and Gents—do you what it feels like when you know something is off?  You can’t put your finger on exactly what is going awry, but you know something (other than your normal lupus symptoms) just isn’t right? I have been feeling like that lately and not to sound like an armchair rheumatologist, but I think it is my thyroid.

I brought this up at a doctor’s appointment in early December and the doctor, who I was seeing while my normal doctor was out on maternity leave, completely dismissed me in favor of the numbers on my chart from the last few months. “Your thyroid function is within normal range” is what she said. “I am going to withhold any treatment on that.”

I pushed once and asked why I was having all of the symptoms of hypothyroidism if I was in normal range. She told me it was because of “the heavy-duty immunosuppressant drugs” I am on. And with that, I shut up. Not because she gave me an answer, but because she was completely wrong. I am not on any immunosuppressant drugs (save Plaquenil), let alone the heavy hitters that so many lupus sufferers rely on. I stopped talking because she revealed that she wasn’t listening–and even worse, she wasn’t informed.

If there is a single thing I have learned In The Lupus, it is that patients need to advocate for themselves. This might sound obvious, but when you are tired and sick and feel like you are getting less well by the minute, it is hard to do. It is hard to find your voice again once it has been dismissed by a physician. It is hard to confidently say: I know how my body reacts. It is hard to keep speaking up and fighting for another blood test, a new or different level of medication, or a bit of understanding. It is hard–but we still have to do it.

The Goal with Lupus is to TREAT-TO-TARGET. That means finding the best possible health we can be in and working towards it. And we can do that by following the overarching principles outlined in a new article in the Annals of the Rheumatic Diseases. The first principle in treating Lupus to target is:

The management of systemic lupus erythematosus (SLE) should be based on shared decisions between the informed patient and her/his physician(s).

It is a team effort. I know my chart goes back far beyond what a doctor has in front of them, and my experience in this body goes back further still. It is a lot of information to digest. It is a lot of information to keep up with. But that is everyone’s job; patient and care provider. We have to work together to manage whatever my best health is. We all need to do the same.

So that is why I spent last night elbow deep in my medical records building a case history on a single symptom to bring to my doctor today, and lobby for some blood work and then related medication so that I can stop feeling so cold and hoarse, and start feeling alert, and warm, and on the upswing again. Somewhere in the stacks I found an ultrasound report that said: Pancreas and spleen unremarkable. That made laugh and think of all of the things I know about my own body. I know the exact size of my kidneys; I know that I have a tiny liver cyst. I have seen my heart waves on paper, my genes rearranged, and the innermost core of my own eyes in 3D. I have all of my records in order, researched the lab results, and made a list of questions. I was ready to talk with my doctor.

My appointment went well in a lot of ways. I was able to get my chart corrected. I was able to talk to my doctor about the symptoms I am experiencing and why they are concerning me. She ordered the blood work that could help unravel my current Lupus mystery (it is thyroid related, mark my words). But then everything went downhill.

When I thanked her and said: “as long as I have your memory here, I am ok, but if you ever leave, I am in a world of hurt.”

She said she was leaving the practice.

Now more than ever, I know that I have to manage my condition and promote my own health. What works for me is a doctor who will listen to me and determine a course of treatment with me–the patient and the soul living in this body–and the numbers on my chart. Because the numbers don’t have a voice and I do.

I hope you will advocate for your own health too. Know your triggers. Know your early symptoms of a flare. Know yourself and speak up. No one else will do that for you.

—-

PS: I am trying something new. Whenever I post about a doctor’s appointment, I am going to post the good, the bad and the ugly of the experience. For this one the good was: a medical student shadowing my doctor. I love getting to talk to med students about patient care and lupus. I also love that this student was shadowing my doctor, who I think of very highly. I also only had one vial of blood taken! The Bad: Waiting in a waiting room full of coughing and sneezing. The ugly: The pink paper robe.

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.

What Does a Lupus Flare Feel Like?

/ dscherff2013 / 3 Comments

Someone just asked what a Lupus Flare feels like and I answered:

 

It Feels Pretty Damn Bad.

 

Here is what the tiny print says:

Imagine having the flu and then falling down a flight of stairs. Now imagine that the medicine you are taking to feel better makes your heart race, head ache and your emotions rage. Now imagine your doctor can’t help you and some people don’t believe you don’t feel well. Now add the responsibilities of life, the frustration of limitations on what you want to do and the guilt of having to have everyone in your life make concessions for you. Lupus is the worst..

 

What does it feel like for you? Post a comment or follow on Facebook and talk to me there!

Keeping an Eye on Plaquenil

/ dscherff2013 / Leave a comment

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.

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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.

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

/ dscherff2013 / 3 Comments

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.