Sick (8 page)

Today I started a month long US tour with my band. We've been together for over four years and have been a large part of what I do and what I'm known for by most of my friends. Recently, I turned 25, quit the job I hated and now make a living doing graphic design and illustration, mostly for bands and record labels. I went to college right out of high school so I could get a “good job” that gave me health insurance and I've worked hard to get to a point where I can live in Brooklyn, go on tour, and not be totally broke. For a lot of people, that isn't all that difficult, but I NEED health insurance, which can be a hard thing to come by. I need health insurance because when I was a kid I was diagnosed with Marfan Syndrome, a connective tissue disorder, which has since affected almost every aspect of my life.

Marfan Syndrome is something that requires regular doctor's visits, but doesn't currently impact my day-to-day life beyond getting out of breath a bit easily and not being able to do heavy lifting. During my adult life, it hasn't been anything I can really complain about, and for that I'm very grateful. My childhood, however, was spent in a back brace, battling severe scoliosis (curvature of the spine) which I had surgically corrected when I was 11.

For most of my life I've also been followed by a cardiologist for a heart condition where my aorta, one of the main valves in your heart, is progressively not doing its job very well. I go see a cardiologist twice a year to make sure I'm not getting worse and am not at a greater risk for an aortic aneurysm than usual. If I were not followed for this, and a developing aneurysm was not caught in time, there is a very good chance I would die. Usually my cardiologist says my condition is just about the same as last time, tells me to call him if I start getting dizzy, and sends me home. But not this time.

Three days ago my cardiologist told me that my heart condition may have gotten a bit worse and I'll need to go back to see him sooner rather than later. My next appointment, in four months, will confirm whether or not I'll need further treatment. And by further treatment I mean have my aorta replaced. I'm not supposed to do anything differently until then, as this may be nothing to worry about, but what a way to start tour.

How do I deal with the fact that I really might have to have heart surgery and have
it soon? How did I deal with the fact that I probably can't have children because of this? How did I handle having spinal surgery as a pre-teen? How do I deal with the possibility of a hip replacement or the slight chance I'll lose my eyesight? I'm not totally sure myself. I wish I had an answer for how I get through it, or think about it, if only for my own benefit, let alone that of others.

I do think that one thing that has helped me cope with the uncertainties of my illness is being a part of punk and a radical community. Maybe it's because a lot of us have been through hard times growing up and there's that common bond and understanding. Maybe it's because there's a more open dialogue about support and illness than in other groups. Maybe it's because I can get free therapy out of writing, singing, and playing songs. But whatever it is, having a support system of friends telling me it's okay to be myself and not hide my differences, has given me a better ability to roll with the punches. Being a little “weird” isn't judged harshly, whether it's having blue hair, dressing a little strange or having some pretty cool surgical scars. Needless to say I could've used more of that mentality when I was 5'8” and lanky at age 13.

Dealing with illness and being okay with being “different” has also shaped a lot of who I am as a person. It's why I care more about my friends, working hard at the things I enjoy, and playing music than I do about most material items and monetary wealth. I just have bigger things to worry about. Life is too short to spend it worrying about the latest trend or what other people think of me or the choices I make. So long as I have a roof over my head, I enjoy what I'm doing, and I have health insurance, I'm all set. I'm doing okay right now, but as I have recently found out, that can change in a heartbeat. No pun intended.

Today I get to tour the United States in a van with my friends. Until I go back to see my cardiologist, all I can do is sit back, make sure I take my medication, and enjoy the ride.

Crohn's disease is the shits, literally. Dealing with drastic weight loss, complete lack of energy, months on end of bloody diarrhea, constant pain in the gut, malnutrition, hair loss, not to mention the plethora of side effects that come with all of the medications is never fun. It can be especially damaging to your psyche when you get sick in your teenage years like I did. Right when I was trying to gain independence, I lost control of my own body as well as any control I may have had over how to live my life. Every day and every decision became dictated by my disease and by the rigid regiment of treatments.

However, for some reason, I came to terms with my disease quickly. My condition was diagnosed relatively fast as Crohn's colitis (an autoimmune disease of the large intestine), and I was able to start treatment, so I didn't get far behind in school. I had a supportive network of family and friends, a great doctor, and health insurance through my parents. Crohn's is a chronic disease so it never goes away, although you can treat the symptoms. Sometimes the symptoms will disappear for no good reason at all, and then they will return again, also without warning. As I began college, I had a period of three relatively quiet years. With my disease in relative remission, it seemed like just another routine part of my life. I had to go to the GI doctor occasionally, be comfortable constantly talking about my bowel movements, always know how to get to the nearest bathroom, and get my white blood count tested from time to time.

What I didn't realize in those first few years with the disease was that I had become marked. Despite the fact that I felt like a capable, active, independent person, on paper I was something totally different: uninsurable. Leaving the security of student life (and simultaneously my parent's insurance plan), I have slowly discovered that I am in for a long, hard road.

My first year out of school, I was tipped off that I should not try to get my own health insurance independently. If I tried, I would either get denied or be forced to pay an exorbitant monthly premium. To make matters worse, I was warned that if my coverage was rejected, I would forevermore have to check the box on insurance forms indicating that I had been denied health insurance for medical reasons. Basically, I would be shooting myself in the foot for the rest of my life. So instead, I signed up for a short-term insurance policy, which gave me a year with minimal coverage. It was a crappy plan, but the symptoms of my disease had lessened. I figured I was fine.

Unfortunately, I wasn't fine. Within a few months, my disease returned in full force. With bad insurance, no energy (thus, no job), and no transportation, there was little I could do. I stayed at home, continually getting sicker and sicker. I didn't have the money to pay for the doctors visits, the blood tests, colonoscopies, and Barium drink x-ray procedures needed to investigate the state of my colon. I looked into clinical trials for Crohn's disease since they pay for all of your treatment, but I didn't necessarily trust new drugs. I don't even like to take Tylenol, so an untested treatment was not going to be for me. Instead, I lay in my bed all day, getting up only to go to the bathroom every twenty minutes, most of the time lacking the energy even to sit up. Through all this, I continued to hide the seriousness of the situation from my family and friends. I didn't want them to worry and I wanted to be able to take care of myself.

I finally made a decision that my health was more important than money. I went to the doctor who put me through all the tests and started on a new combination of drugs to get me healthy. This time, however, my flare-ups didn't subside with the drugs, making the next three years a struggle. Juggling medicines, their side effects, Crohn's symptoms, thousands of dollars in medical bills, hours on the phone with the insurance company about EOBs (Explanation of Benefits), not to mention the full-time job I started in order to get insurance (my short-term insurance had run out at this point), I began to realize that this was going to be a lifelong battle. Not just a battle with my disease or a battle to live a relatively “normal” life, but a battle for the ability to pay for treatments and to keep my health insurance coverage.

I don't think there is any person in the United States that hasn't been affected by our country's health insurance policies, either by not having insurance or by having to break her or his back trying to deal with the incomprehensible benefit manuals and customer service representatives. Not to mention that since it is common practice for insurance companies to negotiate a lower bill with doctors' offices, those without insurance are forced to pay higher costs than those who are covered.

With insurance tied to employment, the healthcare industry discriminates against the unemployed, the disabled, undocumented immigrants, the self-employed such as artists and musicians, athletes, part-time workers, and anyone trying not to feed into the system. With preexisting condition clauses, our health insurance system discriminates against anyone with a diagnosis of a severe or chronic illness. With so many procedures needing prior approval, and so many ifs, buts, and ors, the insurance companies are forcing many people to make medical decisions against their better judgment.

Hopefully this system will soon change. However, any system-wide change will take tons of time and compromises, so in the meantime, it is important for those
of us with major illnesses to be one step ahead of our insurance companies. I have learned that my health is worth the struggle of dealing with these systems, so that I can lead a full and productive life. However, to the insurance companies, I am still nothing more than my diagnosis, 555.1: Crohn's colitis.

THINGS I AM GRATEFUL I HAD, OTHERWISE I WOULDN'T STILL BE HERE:

• Friends and family that could loan me money to pay medical bills
  
• Family willing to help keep me up to date about new treatments and clinical trials
  
• Family and friends that could help me with transportation to the doctor
  
• No shame about speaking of bloody diarrhea at the dinner table
  
• Family that provided me a free place to stay when I was too sick to work
  
• Access to a landline telephone so I could make lengthy calls to the insurance companies in the middle of the day
  

IMPORTANT THINGS TO KNOW ABOUT HEALTH INSURANCE IF YOU HAVE/HAD A CHRONIC OR SEVERE ILLNESS:

• Be careful applying for your own independent health insurance plan. You may be denied, which can cause greater problems down the line.
  
• Don't go without insurance for more than 63 days. (You probably shouldn't go without insurance at all, if you can manage it.) 63 is the magic number. If you keep yourself insured with no gaps of more than 63 days, the preexisting condition clause is waived. You will have to get a certificate of credible insurance from your old insurance company though, which usually just takes a phone-in request—or two, or three.
  
• Your new company might not ask for the certificate of credible insurance, but if you don't send it, they won't cover it, so send it in anyway. Also, keep a copy for yourself so you can send it in again when they claim that they “did not receive it.”
  
• If you are an artist of any sort, consider joining Fractured Atlas, an organization that's sole purpose is providing a group medical insurance plan to artists. It's through Aetna and similar to most other group plans available. Membership to Fractured Atlas does cost something, but it's still much more reasonable than independent insurance. It's not available in all states, so check out their website,
  www.fracturedatlas.org
  , to see if it is available where you live. There are also similar programs for other groups/
  states, so ask around to see what's out there.
  
• If you want to check out clinical trials, they usually pay for all your procedures, etc. Check out the NIH's site to search what's being tested. (
  http://clinicaltrials.gov
  ) HOWEVER, ONLY DO TRIALS THAT ARE IN PHASE 3 OR 4. In those phases they know the side effects and are usually honing in on the proper dosages, i.e., they are fairly sure it won't accidentally kill you.
  
• Get in touch with a foundation focusing on your illness. The people there may be able to help find you money to pay for expensive treatments.
  
• Talk with the social worker at your hospital. They can help connect you with resources.