You are currently browsing the category archive for the 'Uncategorized' category.
One of the amazing people that I met this weekend at the Highland Park Scleroderma Foundation walk was Lisa Helfand, who found me through this blog. She told me that she was diagnosed with scleroderma 23 years ago and is married with two kids. She wrote with some tips for concealing her telangectasias.
The concealer that I use is by MAC- it is called “full coverage foundation“-this is the first layer I put on. Next, I use Studio Fix by MAC (second layer) and to finish it off, I use crushed powder by CLINIQUE. You can only get the full coverage foundation at MAC stores (not MAC counters).
You can also get the cosmetics that Lisa recommends on the internet. Despite her long-standing illness, Lisa seemed full of energy. She was very open about her struggles with scleroderma. I can vouch for her cosmetic suggestions– I thought she looked great and I couldn’t see her telangectasias at all.
Rep Tierney (D-MA) introduced H. Res 1232 on May 22, 2008 supporting the idea of a National Scleroderma Month. The Scleroderma Foundation’s advocacy committee has been working to secure more co-sponsors for this legislation, and you can help this effort. With 50 co-sponsors, the bill does not need to go to committee and can be passed more quickly, and there are currently 20 co-sponsors.
You can figure out who your congressperson is, and how to contact them, by clicking here and entering your state and zip code. You will be given a contact phone number. All you have to do then is call that number and ask to speak to the Health Affairs Legislative Aide and tell them you would like to request your congressperson become a co-sponsor of H. Res 1232. Leave a message with contact information if you can’t get through.
Become an Scleroderma Foundation advocate today by clicking here and filling out the online form. You will receive “action alerts” periodically prompting you to contact your legislators about specific issues of importance to the scleroderma community.
The bill currently has 20 co-sponsors, and I’m proud to say both of the legislators that I contacted (Bobby Rush and Danny Davis, from Illinois) signed on. Here is the complete list so far:
Rep. Tammy Baldwin [D-WI]
Del. Madeleine Bordallo [D-GU]
Rep. Lois Capps [D-CA]
Rep. Michael Capuano [D-MA]
Rep. Steve Cohen [D-TN]
Rep. Danny Davis [D-IL]
Rep. Maurice Hinchey [D-NY]
Rep. William Jefferson [D-LA]
Rep. Patrick Kennedy [D-RI]
Rep. Dennis Kucinich [D-OH]
Rep. John Lewis [D-GA]
Rep. Edward Markey [D-MA]
Rep. James McGovern [D-MA]
Rep. Gregory Meeks [D-NY]
Rep. Bobby Rush [D-IL]
Rep. Linda Sánchez [D-CA]
Rep. Janice Schakowsky [D-IL]
Rep. Robert Scott [D-VA]
Rep. Christopher Shays [R-CT]
Rep. Christopher Smith [R-NJ]
If your representative is not on the list, please make a phone call today! You’ll be surprised how easy it is to make a difference.
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.
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.
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
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.
I was reading Real Simple magazine and they had a list of blogs that they recommended, including:
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!
My son loves the Noggin program Jack’s Big Music Show. His favorite show features Andrew Bird, who was quirky and cool, playing his violin like a guitar. Subseqently we learned that he was a violinist in the band The Squirrel Nut Zippers and now has several solo albums. We bought his album and got on his mailing list. Today I received an email about Andrew’s blog for the New York Times: http://measureformeasure.blogs.nytimes.com/ He talks about his songwriting process and how he always has melodies in his head but that the words come more slowly. It’s a fascinating look into the mind of a highly creative person.
Andrew says that his creative process is aided by riding his bike, which he takes with him in the bus when he’s on tour. He rides around unfamiliar towns and his mind is free to brainstorm.
The past two days I have been home from work with my sick son. He’s 18 months old and has had vomiting and diarrhea… a messy prospect, since he likes to be held while throwing up. He’s also been sleepier than usual, so in between laundry loads I had time to make dinner.
I had bought a delicious looking Amish chicken from my local produce market and decided to roast it on Wednesday, instead of saving it for Sunday dinner. But how to prepare it? My usual cooking style is a bit over the top and scattered– I’m attracted to the recipes with long lists of spices, yet I usually need to pull together dinner in less than 30 minutes. The usual result is a flurry of activity, sticky kitchen counters, and dinner thrown onto the table, adding to the crescendo of stress that has built up during the day. But I decided I wanted to try, for once, just a plain roast chicken.
When we were in Northern California over Christmas this year, we picked up The Art of Simple Food by Alice Waters. I was drawn to the simple ingredient lists and long recipe introductions and had thought it would be nice to cook from it with my husband. But I hadn’t opened the book since we bought it. I opened to the section about roast chicken– 3 pages (!) describing in detail Alice’s philosophy on the best way to cook the bird. The ingredient list: salt, pepper, oil, chicken. That’s it! For once I followed a recipe to the letter, even salting the chicken the day before I cooked it. I resisted adding butter or garlic. I also made a simple potato gratin and I found cutting the potatoes into thin slices very meditative. My son slept through the whole process.
The chicken was delicious– the best I’ve ever made. And I enjoyed the process. My life, and my cooking, could use some simplifying and streamlining. My life is complicated enough without my help.
It seems as though I am in constant motion. Being a doctor is a very active profession. Obviously, you have to see each patient, lay hands on them, evaluate their complaints. Examining kids is challenging, too; often you have to hold them down to look in their ears or the backs of their throats. You have to bend over to press on their bellies, and sometimes chase them around the room if they get away from you and their mom. Then, I have an 18-month old at home, who still wants “up” often. And we live in a third-floor condo. All this activity add up–for me– to chronic aches and pains. I end up taking several pills a day of aleve or motrin and I worry about taking too much anti-inflammatory medication. The issue with scleroderma, too, is that most of us suffer with reflux as well which is often worsened by anti-inflammatory medicines. So I often end up taking more of my acid-reducing medicine, like Nexium.
COX-2 inhibitors (like vioxx, celebrex) are more selective for the inflammatory substances that cause pain in the body and have less stomach upsetting side-effects. These were a boon for arthritis patients who often have gastritis and even bleeding with conventional inflammatory medication. Unfortunately all these medicines were taken off the market in 2006 because of reports that they had increased the risk of heart attacks. The data actually showed that if you had no heart disease to start with, these medications were completely safe. These medications are still on the market, but they have a “black box” warning, which means that you have to have a special dispensation from your doctor to be able to buy them.
I had a hoard of free vioxx samples that I would take in special pain occasions– when the pain was really bad. Now my hoard is gone. So I’m stuck with doing a balancing act: should I help my pain and hurt my stomach, or vice versa?
My yearly PFTs were done recently and showed a 20% drop in my diffusion capacity and my total lung volumes. Although I usually am more worried about my yearly cardiac echo, PFTs are also nerve-wracking. As you sit in a cylindrical glass box and your nose is pinched with a plastic plug, you follow the technician’s instructions and blow in and out. We learned in medical school that this test is very “effort dependent” which is why we can’t use in children who are younger than about 7; younger children are not able to follow directions well enough to do well on the test. The technicians know that you have to follow directions and put in enough effort to the test in order for the results to be accurate, so they are generally very loud and scream “blow, blow, blow!!” Most will repeat the results if they didn’t think you tried hard enough. This most recent PFT, though, went a little TOO smoothly– no yelling or repeating of tests involved. I was worried even before the results came back that they might not be accurate. So I wasn’t overly concerned when I emailed my pulmonologist about the test results. He emailed me back right away (thanks, Dr. Naurekas!) and said he looked at the “flow loops” (the patterns that your respiratory cycle makes as they are recorded) looked normal to him and it didn’t look to him, based on what he could see, that my effort was poor. Therefore, he recommended a CT scan of the lungs.
That was quite a blow– for 6 years now, my PFTs had been completely normal. I had had a CT scan once before and that was normal too. Because I was scared I pushed Dr. Naurekas to order the chest CT asap; luckily I was able to do it in two days.
I’ve had a lot of medical testing done but somehow it never seems to get easier. I was nervously sitting in the waiting room for my name to be called and this woman plops down across from me. She looked like she was about 40, but very hard-living, and the right side of her face was swollen, the eye bulging from her head. She immediately starts screaming into her cell phone: “how am I supposed to get home? I got no money! You bastard!” on and on, seeming not to care who was listening. She hung up on one call and then dials another: “that dick, he punched me, I called the police, he’s going to jail, that’s the last time. They gotta check my eye now, I been waiting all day!” Several times I think she was trying to catch my eye but I was embarrassed for her and looked away.
My name was called and I was led into the CT scanner. I laid on a thin plastic bed and was moved in and out of a plastic-covered doughnut. It was a long scan. They were doing an “interstitial lung disease” protocol to see if I had developed any fibrosis, which required scans during breathing in and out, on my stomach and back. It took almost an hour to finish.
Just around the circular opening to the scanner is a thin window into the CT scan machinery which whirs around while the machine is running. I watched this whirring while I thought about the woman outside and how different her life was from mine. I wished I had said something to her. By the time I was done, she was gone. I had been myopically and completely focusing on what the CT scan would show and that lady’s conversations had snapped me out of that.
After all that, my CT scan was completely normal. Life goes on. Phew!
I went to my rheumatologist appointment yesterday. I only go every year or so, and I’ve become– over the years– much less apprehensive about the experience; I already have a firm diagnosis that upended my life– what else can they discover? But I still get nervous. When I was little, I thought that doctors had magical ability to figure out what was wrong with you just by examining you, as if the stethescope and blood pressure cuff had magical abilities. In fact, I was nervous that somehow the doctor would discover my secrets. But becoming a doctor myself– and even more importantly, becoming a patient– I have discovered how little doctors are able to tell just by looking. The first major milestone on the way to becoming a doctor is to be able to complete an “H &P” or History and Physical Exam. And history is often much more important than the physical. But it’s difficult as a patient to relay a good history to your doctor. First, your doctor usually has a particular agenda, a set of questions that he or she wants to have you answer. Secondly, the whole experience of being weighed, blood pressure taken, questioned by several people, tends to be distracting enough that you forget all the questions that you came to have answered. Being a good patient is much more challenging to me than being a good doctor. There is a balance that I am trying to learn how to strike between melodramatic about every little ache and pain and being too stoic and not having my questions answered. Monday I go for my yearly ultrasound of the heart and lung function tests; I’ll be crossing my fingers that I won’t have to see more doctors and be more of a patient in the near future.
Recent Comments