Lindsey’s email

I received an email from Lindsey Grogan,  the University of Georgia student with scleroderma who is swimming in the paralympics this summer (see this blog post).

 Hello!
Sorry it took me so long to reply. Finals are coming up next week so things are pretty busy!vI have focal scleroderma, I think it is similar to or the same thing as localized. I was diagnosed when I was 2. My left leg contracted and
became smaller, and the left side of my face also was affected. As a result, my leg was amputated when I was 7. (I used a walker/crutches to get around before then.) I started swimming that same summer on a recreational team in my hometown, and I got involved with disability swimming my senior year of high school.

It was great to hear from Lindsey and learn a little more about her story.

 

 

Alivia

  

Alivia Watson

 

The March 2008 issue of the Scleroderma Voice (published by the Scleroderma Foundation) features a young lady by the name of Alivia Watson who was diagnosed with scleroderma in 2005.  She underwent painful and costly procedures, including IVIG and methotrexate, and had suffered from digital ulcers, joint pain and tight skin.  She miraculously began to feel much better in February of 2007 and was taken off all medication. To this day, she is still feeling well.  Alivia and her family don’t know why she suddenly started feeling better, but they attribute much of their strength throughout the process to God.  Alivia’s mom said

We may never know why God chose to allow Alivia to have scleroderma, but we do know in our hearts that He made her special.

Alivia’s parents put together a website describing Alivia’s course: www.helpalivia.com

 

Talking to your kids

In the March/April issue of Neurology Now there is an article about how to talk to your kids about your chronic disease. They wrote the disease from the perspective of neurologic disease, but a lot of it applies to any chronic disease, scleroderma included.

The authors suggest that you should always try and explain as much to your kids as they can understand. Some specific suggestions:

• Stay calm: move beyond your own fears
• Don’t overwhelm your child: explain that you may tire easily or not be able to fix their toys, but don’t talk to them about the worst-case scenario
• Use their questions as your guide
• Accentuate the positive
• Trust your child to accept you: parents are often surprised about how accepting their kids are about their condition
• Prepare for emergencies: pick emergency contacts well ahead of time and teach your kids how to prepare for emergencies.
• Know that kids want to help
• Encourage peer support
• Never blame your child for your disorder

That last one seems obvious, I must say, but kids often think they cause bad things that happen to the people that they love.

Poem for today

This is a poster that was part of an art exhibit by children hospitalized at Comer Children’s Hospital in Chicago, where I work. This particular poster really struck me with its honesty.  I think all of us with a chronic disease can relate.

If you can’t read the writing, here is what it says:

 

Suffering has created me

And smiles create fears

My mind once blown with color

Is wiped clean with the tears.

 

My heart won’t forget this

And my strength won’t forgive

My escapes do no justice

I’ve got a new life to live

 

I keep my feelings in the shade

My road ways haven’t reached the sun.

My trust in humans is withering

Alone, I’ll finish what has begun.

-Angel Katz, 17 years old

 

Pretty eloquent for a 17-year old, don’t you think? 

Can I help someone else?

I got an unexpected email last week from a former colleague, now an attending plastic surgeon living in a different state. I hadn’t heard from him in a long time.  He was my senior resident on the Transplant Surgery service in the days before laws restricted work hours for residents. We spent every 3 nights in the hospital and would often work more than 100 hours a week. He was a careful, thorough and fair senior resident, and he was respected by the general surgeons even though he was in training (as I was) to become a plastic surgeon.  When I resigned from my plastic surgery residency program, I never spoke to him personally about my decision or my illness.

This man’s nephew is in his second year of medical school and has wanted to be a plastic surgeon for a long time.  He was diagnosed just two weeks ago with an autoimmune disorder himself, and my former colleague wanted me to talk to him about his future in medicine, to be an example to him that there are other fulfilling options in medicine besides surgery.

Being asked to meet with this young man made me think back to my diagnosis of scleroderma as a surgical intern. My hands were turning blue in the operating room constantly, I was having reflux symptoms, and red blotches started appearing on my face. I knew something was wrong, but I had to convince the first doctor I saw to draw my blood. He told me “you work too hard and look to good to have anythign wrong.”  When I was diagnosed with CREST syndrome, I remember asking the rheumatologic specialists how the disease would progress, and whether I should quit surgical residency.  I remember asking if there was anyone that I could talk to about what my future would be like.  I tried to connect with other people with the disease, but the first few women I talked to were so diabilitated and depressed I couldn’t relate to them.  It seemed no one had gone through what I was going through.

I yearn to help this medical student through this time in his life, but I wonder in my heart what connection, if any, I’ll be able to make with him.  He has been diagnosed so recently that I’m sure he’s still in denial. When I was first diagnosed, I certainly denied a lot of realities. I didn’t want to believe that I would have to change a career that I was so passionate about, that I had worked so hard to get into. I didn’t want to believe that I would be in pain every day for the rest of my life, that having a baby and carrying him to term would be so difficult, that my appearance would change dramatically.  Denial is a defense mechanism that served me well early on– if all these realities had hit me at the same time, I couldn’t have gone on. 

I’m worried with all this baggage that I take to this meeting that I’ll be too intense and serious, that I won’t be capable of telling him what he wants and needs to hear. 

To do or not to do…

To do or not to do, that is the question that has been on my mind today. Just because we CAN doesn’t always mean that we should.  During our morning conference this am, we had a discussion about a case involving a newborn with multiple anomalies, including her liver in her chest, and an abnormal heart structure. She had a very low likelihood of survival at all, but even less a likelihood of “meaningful survival,” of being a normal child.  The hospital team went ahead and put her on ECMO (heart-lung bypass) anyway and then took it away after two weeks of futile efforts, costing ungodly amounts of money for little benefit (to my mind at least).  One of the arguments made at the conference was that advances in medicine are often made when seemingly “futile” procedures are done experimentally. But I can’t help but think that if I was this baby’s mother I would rather he died peacefully in my arms that surrounded by doctors and two 3/4″ cannulas in her neck. 

This week’s Newsweek had an article about a new procedure that surgeons at UCSD have been trying what’s called “Natural Orifice Surgery.” Basically, a camera is inserted through the mouth and snaked all the way to the appendix. Then the appendix is removed from the inside.   For the brave man who first had this procedure done, the operation took three hours, instead of about 30 minutes for a regular procedure.  Who is supporting this research?

Some of natural-orifice surgery’s biggest cheerleaders are device makers: since 2005 at least 10 new companies have sprung up to manufacture technology for the emerging field. Established players, like Covidien and Ethicon, also work closely with doctors.

Not surprising.  I remember when I was a surgical resident, the makers of a robotic surgical device set up a “learning station” on live pigs where the residents could practice the technique.  The equipment was worth more than $1 million dollars, and the set up was tedious– an operation that could be performed safely in minutes was turned into one that could last hours and (to my mind, at least) not as safe. So why bother? It was technology in search of an application. (Interestingly, University of Chicago is touting it’s robotic heart surgery heavily in local and nationwide media.) 

It’s astonishing to think how many children could be vaccinated with the money spent on ECMO run, or how many people with heart disease could get their medications with one robotic heart surgery.  Why are our priorities dictated by what we CAN do in

Swimmer with Scleroderma

I came across this article about a University of Georgia sophomore who is swimming in the Paralympic trials this summer. Lindsey Grogan was diagnosed with scleroderma when she was two years old and had to have surgery to remove part of her left leg several years later.  (Although it doesn’t say in the article, I’m guessing she has the localized type of scleroderma, also known as “morphea” because of the appearance of her face. In addition, systemic scleroderma wouldn’t cause damage to a leg causing t1he need for amputation.)

What an accomplishment: Go Lindsey!

 

Mind Medicine

Last week I started a new rotation, on the Pediatric Neurology team, and I inherited a patient who had been in the hospital for about a month. She had had every service in the hospital see her, and she had ever test that I had ever heard of performed on her. Yet she still wasn’t talking or eating. Despite the medical team’s best efforts, there was no medical diagnosis that could be found.  The child psychiatry team was consulted, and they decided that the best diagnosis for her was catatonia, a condition that rarely affects children and causes unresponsiveness, mutism and abnormal movements. She needed psychiatric care. The family absolutely refused, saying “my daughter isn’t crazy!” and insisting that more and more medical tests be run.  Many of the physicians who were taking care of her ended up bowing to the family’s will: in medicine, of course, you can never say with 100% certainty that someone this diagnosis or that one, and most doctors are reluctant to acknowledge that there really isn’t anything wrong with their child.

 

Yet, all physicians acknowledge that the mind is a powerful force in medicine. The placebo effect of any medication may be as high as 30%; in medical school we are taught that you must always compare a new drug against a sugar pill because just the act of taking a medication that you think will work has a huge affect on how you feel.  There are innumberable diseases that we think have a primary psychological component to them. In pediatrics, many cases of abdominal pain and headaches are ultimately decided classified as “functional”– normal

Handicapped?

Ran across a column that was published in the Indianapolis Star.  Jane Younce explains how she endures the stares of other people as she parks in a handicapped spot. She has had multiple chest surgeries, but her scars are hidden by her clothes. 

But what does handicapped look like? Who gets to park in handicapped parking? Does handicapped mean that you are wheelchair confined? Does it mean you must have a van equipped with a wheelchair lift?  One of my neighbors has the same issue. She has been diagnosed with scleroderma. She doesn’t fit the image of someone who needs a handicapped parking space but this cruel disease is slowly causing her organs and joints to harden.

Many people–like this woman’s neighbor– with scleroderma don’t look very “handicapped” on the outside, but need extra help.

Chronic Disease blogs

I was reading Real Simple magazine and they had a list of blogs that they recommended, including:

Hostess with the Mostess

You Grow Girl

and Working Moms Against Guilt (my favorite title!)

I started exploring other people’s blogs, since I was writing one of my own (such as it is!) I was probably the last person in the blogosphere to have discovered Google Reader but have “subscribed” to a number of blogs using that service. Most of the blogs (except those recommended by Real Simple) have had to do with food; I love to cook and read about cooking.  Some great blogs chronicle their author’s adventures with all types of culinary creations, and they seem to have an avid following, with 20 or 30 comments with each post.

 I don’t generally enjoy reading about other people’s struggles with chronic disease (I have even had a hard time, on occasion, listening to my friends with scleroderma go on and on about their aches and pains.) I suppose that I feel as though I have enough to worry about with my own crazy life.  But this afternoon I tried to find blogs dealing with chronic disease and came up mostly empty-handed.  When I searched google for “chronic disease blog”, the number 1 result was this blog, which seems to be some type of advertisement for something called EFT.

Type A with RA (cute name!) is the free-flowing monolgue by a high-energy woman with rheumatoid arthritis.

Chronic Babe is written by a woman with fibromyalgia and anxiety disorder.

 Let me know if you’ve found other blogs that relate to living with a chronic disease!