Wednesday was a hard day for me. Like many people I know, I was disappointed not to see my candidate come out victorious, but I was also worried for my friends and myself and what this new presidency will mean for us. There are a number of things that concern me: LGBTQ-rights and safety, women's reproductive health, immigration standards, environmental protection, and healthcare. After I composed myself, I decided to take a first step and donated to a number of organizations that I know will continue to fight on behalf of these and many other issues. And today, I want to speak out about healthcare. This may seem like a strange issue, but the thing is, I have a chronic illness and insurance is a big fucking deal to me. I am very lucky that I have had coverage since my diagnoses (it was only through a mistake from the Peace Corps that I was covered), but I know that I could easily lose coverage and if that happens and there is no Obamacare - I know I wouldn't be able to afford treatment. So this is the story of this nasty woman's illness and why she is going to continue to fight.
I was in grade school the first time I learned about lupus. My brother had to do a research report for school and having spent the summer with my Aunt, who was living with it, he was happy to put this new knowledge to good use (and I suspect, to be able to gather most of his research through a quick phone call). As I was preoccupied with my own homework assignments, I didn't pay much attention; but my parents did make it a discussion point at family dinner. For those of you who don't know, the Mayo clinic defines Lupus as a chronic inflammatory disease that occurs when your body's immune system attacks your own tissue and organs. It wasn't until college that I became more familiar with lupus.
I got a case of insomnia my sophomore year, which isn't uncommon in college. It got worse over the summer and by the time August rolled around, it was a real issue and I ended up staying home for the semester. My parents had me see our family doctor and after an unsuccessful round of sleeping pills she ran some blood work which came back with an unexpected result. Turns out that I had the markers for lupus, they indicated that I was most likely a carrier and not an active case. I went back to school, learned to live with the insomnia, and having more important things to worry about - dating, college drama, and semesters abroad - I didn't give a terrible amount of thought to the lupus until my case changed.
I went to Kazakhstan with the Peace Corps after graduation and a couple weeks in I got sick. After a couple days of intense testing the doctors were still scratching their heads and I wasn't getting better; so I came home. It would take less than 24 hours for them to determine that I had a blood clot and was bleeding internally, and another 5 months for them to figure out that my markers for Lupus were active and not just a carrier.
It was a long 5 months, but I was lucky; according to the Lupus Research Institute, it often takes years for a person to be diagnosed with Lupus. If anyone is a fan of 'House' this may seem strange, since Dr. House was often quick to jump to it as the culprit for whatever ailed a patient; but in reality it is typically a much slower diagnoses. There are a couple of reasons for this: 1) There is no single laboratory test for lupus. To diagnose Lupus, doctors use the American College of Rheumatology's "Eleven Criteria of Lupus" - if you have 4 or more of the criteria, they conclude it is lupus. 2) Symptoms of lupus are similar to those of other diseases, which mean there are often misdiagnoses along the way. 3) No 2 cases are alike, meaning there is no "classic" symptoms to make it a shoe-in diagnoses. What made my case different was that I had a baseline test and although lupus isn't known as a hereditary disease, it was presenting as one in my family. As such, the doctors zeroed in on the diagnoses in short order.
According to the Lupus Foundation of America, 1.5 million Americans have lupus; however they believe that the number may be higher because there have been no large-scale studies to show the actual number. It is believed that 5 million people throughout the world have a form of lupus. More than 16,000 new cases are reported annually across the country, and it strikes mostly women of childbearing age (15-44). Women of color are 2-3 times more likely to develop lupus than Caucasians. And yet doctors know very little about lupus: they don't know why it happens; how it develops; why more women than men get lupus; why it sometimes flares and sometimes goes into remission; why more women of color develop lupus; or what can be done to speed along clinical trials and testing.
So what do they know? The Lupus Foundation of America gives a good overview, but I like to imagine my immune system as a bunch of 5 year old kids on a sugar high in a ball pit (my body) with foam bats just beating the hell out of those plastic balls (my healthy tissue) - there is no rhyme or reason for what they are doing, but they are going crazy nonetheless.
We also know that lupus is a disease with flares and remissions; which means that there are good days, weeks, months, and if you are lucky, years; but those may not last. Unfortunately, as noted by the National Institute of Heath, we don't know why it does this so we can't always control them. Once again, I am lucky, I have mostly been in remission since 2007, and I know that I can mostly control my symptoms through a good diet, exercise, avoiding the sun, and minimizing stress. However, doing all of these things isn't always possible and a day touring a new city can quickly turn into a flare even if I wear my sun hat. The not knowing when or how bad your next flare will be is something every lupus patient has to learn to live with, but never gets used to.
At this time there is no cure for lupus, however over the last 30 years there have been significant strides in the treatment of lupus. According to the National Institute of Health, patients today have an increased life span and an improved quality of life thanks to the advancement of medications used to treat lupus. Most treatments include immune system suppressants, which range in strength from pills to chemotherapy - a vast improvement over the original treatments which focused on the entire immune system rather than the specific areas that were overreacting. And with increased genetic studies, doctors are hoping to identify those at risk earlier in the disease process and potentially identify the pathways that cause lupus and its symptoms. Although these studies are underway and recent discoveries prove promising, much of lupus is still a mystery and unknown not just to the doctors but to the world. In recent years a number of celebrities have made headlines with their diagnoses and brought a spotlight to this mysterious disease, these include: Selena Gomez, Toni Braxton, Seal, Nick Cannon, and Lady Gaga.
I may not be a celebrity, but I hope that this brings another spotlight and puts a face to lupus. For me lupus will always be a part of my life - some days it is bigger than others, but it is always there. It is the reason I left the Peace Corps; it is the reason I will not have biological children; it is the reason I entered corporate America; it is the reason I can't pick up and move at a moments notice or will ever live abroad permanently; it is the reason I go to the doctor every couple weeks; and it is the reason I fear for Obamacare disappearing. But it is also the reason I got healthy and lost all the weight; it is the reason I got to live in NY when I was 22; it is the reason I took a different path and found a fulfilling career that I excel at; it is the reason I know what is important and what isn't: and it is the reason I will fight for people who weren't so lucky and don't have access to the care I do. I am a nasty woman and I am a fighter, as are my fellow lupies, and we will get through this, just like we get through every day - even when it hurts or we are just too tired to get out of bed - we will take the next step and live our lives and fight to make sure everyone has access to the care they need and deserve.
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