Day 4 – Health Activist Writers Month Challenge

Please forgive the delayed post! I am picking up from where I left off with the WeGo.com Health Activist Writers Month Challenge after a few weeks of dealing with a family loss and a terrible upper respiratory infection. I am now back to… Day 4!

Day 4 (April 4) – Sharing Resources
 Create a “care page” – a list of your best resources that someone who is newly diagnosed could
go to when starting to advocate for themselves or a loved one.

Stevens-Johnson Syndrome

What is Stevens-Johnson Syndrome?

Stevens-Johnson Syndrome (SJS) is typically an allergic reaction to a prescription medication causing ulceration and conjunctivis of the mucous membranes (eyes, ears, nose, genitals) and epidermal necrosis. Plainly put, ulcers form in your mucous membranes and blisters cover your entire body, causing your skin to start sloughing off. SJS can be minor, affecting less than 10% of your body, or it can be severe, affecting both your skin and your internal organs.

How do I know I have SJS?

SJS occurs withing 1-3 weeks of starting the triggering medication. If you have recently started a new prescription, pay close attention to how you are reacting. Look for red, itchy eyes and/or blisters in the mouth or on the skin. These are some of the first visible symptoms of SJS.

What can I do to limit my susceptibility to SJS?

I cannot stress enough the importance of READING YOUR PRESCRIPTION PAMPHLETS. Know what possible side effects to look for with all of your medications. I learned the hard way that “contact your doctor if you experience a rash” was far more serious than a simple rash. Never be afraid to speak up and ask questions of your doctors and pharmacists. Susceptibility to SJS is genetic, so if a close relative has experienced SJS, be extra careful about what you put into your body.

The Mayo Clinic has put together a good list of Causes of Stevens-Johnson Syndrome. Ibuprofen is often a cause in young children, and other anti-inflammatory medications (like the anti-rheumatic Arava that caused mine) can be the trigger in older individuals.

What steps should I take once I believe I have SJS?

First and foremost, GO TO THE EMERGENCY ROOM! They will need to admit you to the hospital and take biopsies to verify you have SJS.

In my case, the doctors at Miami Valley Hospital tried something new. Instead of simply letting the symptoms take their course, they tried a few things to help ease the pain, to keep infections from taking root, and to stop the SJS from being worse than it could have been.

1. They flushed my system. Twice a day for that first week, I drank this vile cinnamon-flavored drink that helped flush the offending medication out of my body. Because of the blisters and ulcers in my mouth it burned horribly, but was likely a factor in keeping the SJS from taking my life.

2. They treated me like a burn victim. When my skin began to slough off, they used a process of debridement to remove it themselves. For more than a week, they did this daily, peeling the dead epidermis away from the new, growing dermis. They kept the new skin clean, and they covered it in pig skin grafts for support. I still have small, mesh-like scars all over my body from the impressions the grafts left, but they aren’t noticeable to the naked eye. What’s more, they did not have to do any skin grafts, placing skin from one part of my body onto another. My own skin was allowed to heal naturally..

3. They kept my eyes shut. Now that I know more about the effects of SJS, I know that amniotic membrane grafts might have saved my sight entirely. These are HIGHLY recommended. I now visit Dr. Scheffer Tseng, the ocular surface innovator who created the surgery, for my eye condition. These grafts help SJS patients around the world keep their vision. However, this information had not yet made it to the hospital where I was being treated. The hospital brought in an eye specialist, and he kept a steady routine of eye drops and salves, along with keeping my eyes closed for the first two weeks, that saved my corneas. The epithelium (eye skin) was scratched off, but I still have perfect corneas. Keeping the eyes maintained and free from scarring is key to living a full life after SJS!

4. They tried EVERYTHING. As a broke college student, one of my main morphine-assisted concerns in the hospital was that everything would be costly. And let me tell you, it was. Very costly. However, every dime was well spent. I was fortunate to have my family at my side. They insisted on on the doctors ignoring my frets over money and instead ushered in all forms of possible cure. One experimental drug cost $15,000 per IV bag. I got two! At the time, I was mortified to know that a medication could have instead bought me a car (or ten), but afterward I recognized that it probably stopped the SJS from being worse than it was. I highly advocate doing thorough research on what the doctors want to try, but I also suggest being open to things that might not yet be totally proven. Medicine is an ever-growing, ever-innovating field.

5. They kept my toes from growing together! When the epidermis is removed and the dermis is growing back, it can have a tendency to grow together, causing abnormalities like webbed feet and hands or even fused labia. Be aware of the new skin growing in ways it shouldn’t. Checking daily on areas where the skin folds or sits closely to another limb is vital. Only surgery can correct this once it has occurred.

6. They made sure my legs were moving. While this could not always be cone, due to the immense pain friction caused to my open wounds, the nurses kept vibrating pads on my legs to keep the circulation flowing. As soon as I was able to sit up, they sent in a physical therapist to begin working with me, and in a few days I’d mastered climbing stairs again. Unfortunately, my time in the bed did lead to a blood clot, but I have faith the hospital did all they could to avoid it. It hurts to move, but sitting still for too long can have dire consequences. In addition to the clot, I formed bed ulcers on my heels from where they rested on the bed. An orthopedist made me two sets of special shoes: one for lying in bed and one for walking. Again, keeping some movement is vital.

7. They brushed my hair. It might seem silly, but after the first week in the hospital, my beautiful long hair was impossibly knotted. I had very minimal human contact in the first two weeks, but after it was safe to touch me, my grandfather and the nurses took turns trying to untangle my hair. It was terribly sweet and kept me from having to chop it all off!

Below are some websites that might offer some more insight into treatments:

Stevens Johnson Syndrome Foundation – Bringing light to the abyss of ignorance.

Ocular Surface Center – Dr. Scheffer Tseng’s website & research

What can I do to help my recovery?

First and foremost, you must allow your skin to recuperate. I had to stay out of direct sunlight for six month. Between the floppy hats and gloves, I’m sure I looked like the fashion child of Michael Jackson and Elizabeth Taylor. But my skin is beautiful now, especially the skin on my face. The one place I don’t have a scar is my face. This is probably because we kept it thoroughly oiled, medicated, and ointmented for months after my release from the hospital. I had to fight a nasty battle with acne once all that was done, but I won the battle easily and have a gorgeous glow to my cheeks to show for it. I would NOT, however, recommend SJS in the place of a well-time chemical peel.

Second, eye care is essential. Immediately seek out an ocular surface and corneal specialist. Many people are left blind or near blind after a bout of SJS. Seek out the best. Your sight and your future depend on it. In addition to amniotic membrane grafts, I have also already undergone surgeries to resurface one of my eyelids and to replace the epitheleum on my right eye. During my SJS, the stem cells that create clear epitheleum on my right eye were destroyed, so my eye surgeon used membrane from my cheek to replace the lost epitheleum. For a brief time I had sight again in both eyes, but complications from my RA soon caused inflammation and scarring to cover my sight again. Beyond Dr. Tseng’s brilliant surgical solutions, the Boston Foundation has done amazing work for SJS patients. I have personally been considering a consultation for a scleral lens to help with dryness and continued friction from eyelid scarring.

Next, do some research to discover if you can be compensated for your losses. SJS does not appear on many medication labels. And often, doctors will not inform you of this potential side effect. SJS is become less and less rare, meaning that more lawyers are trying to fight the pharmaceutical companies that release their drugs without properly testing them first. Keep your original medication bottle. Keep the original pamphlet that came with the medication. Make sure you have the hospital records that clearly state that medication as the cause of your SJS. Fight!

Possibly the most important thing you can do after returning home from the hospital, though, is finding support. The grief of losing the life you had before SJS can be overwhelming, and I would not be the strong, independent woman I am today without the love and emotional support of my family and friends. I reached out to my community and found willing souls to share my story with, people who would accept me scars and all. One year after SJS I was able to return first to work, and then to school. And five years following the incident, I now lead what I consider to be a normal life. My support system helped me to get here. There will be times when you feel like giving up, and there will be times when you feel like a burden, but your family and friends are the ones who will see you through to the good days again. Keep your chin up! You’ve already lived through one of the worst pains life can offer.

Again, here are some ideas that might help your recovery process:

Boston Foundation for Sight – Restoring sight | Reclaiming lives

Google – Try typing in your city, then “Stevens Johnson Syndrome support group” or “Stevens Johnson lawyers”

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Day 3 – Health Activist Writers Month Challenge

Stevens-Johnson Syndrome: the Beginning

Day 3 (April 3) – Wordless Wednesday
 Post a picture that symbolizes your condition and your experiences.

Stevens-Johnson Syndrome: the Beginning

A reaction to anti-rheumatic medication Arava led to a rather intense form of Stevens-Johnson Syndrome. This photo was taken just a few days into the reaction, in 2008. I chose this photo because it’s about a 5 on my photo scale from 1 to brutally grotesque.

Day 2 – Health Activist Writers Month Challenge

Day 2 (April 2) – Introductions
 Introduce your condition(s) to other Health Activists. What are 5 things you want them to know about your condition/your activism?
 Share links to 3-5 of your old posts (or posts from other Health Activists!) that you think will help
the newly diagnosed.

 

5 Things You Need to Understand About RA

 

1) It’s not just for old people.

After “coming out” about having RA, there have been a rather significant number of young adults in my life who have come out about their own autoimmune disorders. Just a few months ago in the grocery store I heard two women strike up a conversation over organic eggs. As it turned out, they’d both been recently diagnosed with an autoimmune disorder and were changing their diets to help counteract the effects. And when I go in for my Remicade infusions every two months, I see people of all ages in those Laz-E-Boys!

2) It is just for old people.

While autoimmune patients seem to be getting younger and younger (I was diagnosed at age 2), the effects of RA in particular can age you very quickly. I make jokes about being a young person in an old body because RA can make you feel like you’re 80! Rheumatoid arthritis hurts. Your joints can swell up and burn and feel like they’ll never work again. On your bad days, getting out of bed can seem an impossible task–no matter how badly you need to use the bathroom. Lifting a glass of water might even seem a feat for only Superman! This is when you realize how important it is to have young whippersnappers around who love you. 😉

3) It may wizen you, but it also wisens you.

I also joke sometimes that I am an old woman living in a young body. My feet might not have traversed this world for very long, but the experiences I’ve had are significant. I understand better than most how to treasure a walk in the park, how to love my body for exactly what it is, and how to relish in each moment of another day lived to its fullest. Bad days can be frustrating, but good days are so much sweeter in comparison. Because I’ve lived beyond “old age,” I appreciate being young more. And I respect my elders much more.

4) Doctors don’t always know best.

In today’s society, we seem to view doctors as demi-gods. Their opinions are like laws. I, too, used to see them that way. And then a young doctor’s attempt to aggressively treat my RA nearly cost me my life and my sight. When my eyesight began to fail, the wonderful corneal specialist I was seeing actually referred me to a better doctor! This happened not once, but twice. I now see the world’s foremost eye surgeon for patients recovering from Stevens-Johnson Syndrome. Yet even then, he couldn’t figure how to keep my RA from interfering with his surgeries. So when my second rheumatologist wasn’t offering the help I needed (and not seeming to care whether I came in at all), I did some research and found a new one. My current rheumatologist has brought me back to normal! The lesson being: if you aren’t happy or aren’t seeing results, get a 2nd opinion. Get a 3rd, 4th, or 5th! Find someone who has read that obscure article relating perfectly to your case so he, too, can bring you back to normal.

And never, EVER, be afraid to ask questions. While doctors might not be able to prescribe certain things, their knowledge of other patients’ experiences can also prove helpful. For example, when the Remicade didn’t seem to be working all the time, I asked my doctor about dietary changes that could help. Going gluten-free after hearing her stories has been one of the best decisions I’ve ever made.

5) You make your own “normal.”

During my flare-up of RA five years ago, I wondered how long it would be until I was “normal” again. I wanted any quick fix that would erase the pain, the weakness, and the frustration of it all. Instead, I got Stevens-Johnson Syndrome, which took me out of the “normal” world for a year, made life painful and difficult (and EXPENSIVE) for going on five years now, and permanently disfigured my eyes. Through it all, I held onto this subconscious hope that one day it would all be fixed. One day I would wake up, look in the mirror, and be “normal” again. I would have my skin back, my eyes back, my youth back. Then one day I realized that the old me was never going to return. My eyes will always look funny. I will always be on some kind of medication or special diet. I will always have to see doctors of one kind or another. And I will always have the immense strength and wisdom that have brought me to today.

So I will always be different. I will always look different. But I no longer wake up in pain. I can exercise without worrying that I will throw out my knees or cause another flare-up (at least, for now). So instead of being “fixed,” I woke up one morning and embraced this new me, this new “normal.” I highly recommend it for you, too. We might not feel normal, but this is who we are. And we can be this kind of normal together.

 

Check out these links to some past posts that really helped me through the worst days:

Let Them Eat Cake

Connections

Beauty is in the Eye of the Beholder

Finding Normal

Fearing Hope, Needing Hope

 

Day 1 – Health Activist Writers Month Challenge

As mentioned in my previous post, today I am starting the Health Activist Writers Month Challenge, prompted daily by Wego.com. Here is the first prompt:

Day 1 (April 1) – Getting Started!
 Why you write – tell us a little bit about why you write about your health online and what got you started.
 Why HAWMC? This is our third year of the Health Activist Writer’s Month Challenge – why did you get involved this year? Are you a newbie to #HAWMC or a veteran?

 

It might seem easy at first to explain why I write. Writing is an outlet, a form of expression, a means of informing others of my condition and my thoughts surrounding that. When I think about it, though, the reasons behind my writing run much deeper. This blog is informative and an outlet, yes, but it also helps me to feel a connection with others. It feeds my need to feel less alone and to feel important.

When I was acting, I was often asked why I acted. In the end, the reasons behind it were the same as the reasons behind why I volunteer, why got a degree, why I hate so desperately to lose touch with friends, and why I write. In Maslow’s hierarchy of needs, there is a very strong need for human connection and interaction. I believe at the heart of all my doings is that need to connect–not only to connect others to myself but to connect them with each other, as well. When someone reads my words, perhaps she feels just a little less alone. Or perhaps he understands a bit more what someone he knows is going through. Human connection, sympathy, and understanding feeds my writing and my soul.

Similarly, starting this blog and joining this contest are another means of connecting to the world around me. I have needed inspiration to write, and I have needed to feel like my writing is touching those around me. Joining this challenge meets both of those needs (I hope!)