Sunday, May 27, 2012

A Letter

Dear Mitt Romney,

In your quest to obtain the presidential election bid this year you have said some things that have made people feel you are out of touch with the everyday struggles of all but a small number of upper class citizens. I have largely agreed with these criticisms, but it wasn't until I thought about one specific thing you said that I really stood up and took offense.

You said something to the effect of 'if you need money you should go ask your parents for help'

Now, I'm sure you can spin this however you want, and that you intended it to mean money to help start a business, but when I applied the basic principle of asking my parents for money for help to my own situation I realized you have pretty much told me that my life is not valuable enough for my government to help keep me from dying.

You see, while I was busy working to pay my way though college, or at least to pay for what wasn't covered by a near full ride scholarship and student loans, working away to better myself and open avenues for a good future where I could be a success I was dying. I don't mean in the spiritual. starving my soul kind of dying because I was working towards a goal where I would be helping others for a living and that's where I feel success lies. No, I was fighting a war against myself, my own immune system was and still is waging an attack on every blood vessel in my body, from the large arteries to the small capillaries.

This is something you should be able to sympathize with as I understand your wife also suffers from an autoimmune disorder.

Completely unaware of what was going on inside me, I graduated college and began work teaching under privileged kids at a Title I public school.

Within a few months of working I was near dead.

I had attributed my symptoms first, to being at college, and environment where many people are not able to go to the doctors and germs are spread readily. Then I convinced myself that I was sick because I was teaching young children. By December my lungs were hemorrhaging, I could hardly walk, and the only reason my kidneys were not considered to be in failure was because the waste being dumped into my system had not yet appeared in my blood work, which came as a shock to my doctors.

This is how, at the age of 24, I was diagnosed with the rare disease Granulomatosis with Polyangiits formerly know as Wegener's Granulomatosis. A relative of Lupus, MS, asthma, Chrones Disease, and a mirade of other autoimmune disorders.

I managed to finish out the school year taking highly toxic medications everyday, but was, regrettably, not healthy enough to return after summer break. I was lucky in that I had been living with my parents while I saved money to find my own place and they continued to allow me to live under their roof while I spent all of my savings on monthly doctors visits, prescriptions, ER visits, and surgeries.

This was all while I was still on my parents' insurance.

Here is where I get to my reasoning that you have told me I should resign myself to die.

I will run out of insurance in the next few months. I was very lucky that President Obama's health care reform at least was able to let me stay insured until I was 26 years old. You know, the health care reform that was based on the model you created for Massachusetts; the one that would have given me a low cost government insurance option that I could afford had you not helped to block it?

At 26, in November, actually, the same month I will not be voting for you, I will become uninsured on top of being unemployed. I have tried Social Security but, funny thing, they say I am too young and too highly educated to be disabled so I have to wait another 12-16 months so that I may plead my case in front of a judge.

Until then, I get to figure out how to come up with $11,000 a year to pay for my life. This figure is only an estimate and does not include any surgeries, ER visits, antibiotics, hospital stays, x-rays, scans, and labwork that often tag every year for someone who is immunocompromised, is taking highly toxic medications daily, and has a mirade of other complications stemming from such.

My parents are currently helping me, they cannot afford to help me cover this sum, either. Unless you are willing to chip in and help Mr. Romney by coming up with better programs or become willing to put your money where your mouth is, I am stuck between a rock and a wall of knives. Left untreated, my disease has a life expectancy of five months or less once symptoms start showing. In this case, death is a painful process of going through multiple organ failures at the same time.

This is a reality that many, many citizens of the United States are facing right now.

Your thoughtless words lead me to believe that you are not just ignorant of the struggles faced by most Americans, you are dangerously out of touch. I need a leader who realizes very few people have the luxury of turning to a vast family fortune when money is needed. I need a leader who knows that, for most of us, one paycheck is standing between having a home and being put out on the street. One missed paycheck is all it would take to destroy a family and send people to their graves.

You are not that leader.

My life is not a privilege, it is a right and who are you to determine my worthiness based upon my family fortunes?

Monday, May 21, 2012

Saying so Long to Dr. House

Alright, I know I've been a little dismissive of House in the past. Very often when they have included vasculitis in the episode there are many things that are wrong or are inaccurate. While this aspect is harmful to those of us with vasculitis because normal doctors do not exist in a vacuum and many of them, whether they want to admit it or not, watch medical dramas and are as likely as the rest of us to believe what they see on the tv.

On the other hand, House has done some good for vasculitis. They are the only show I am aware of that has consistently mentioned it and in their own way have brought the term to the outside. They have shown that, much like Lupus, vasculitis can mimic any disease and is something serious and should be taken seriously. I know of one person who realized how serious their condition was because they heard it mentioned on House. I have a friend who has noted how many times vasculitis is mentioned on the show. It's in his consciousness.

After many years, House is now coming to an end. The final episode is tonight so stay tuned and keep an eye out for billboards that mention the Vasculitis Foundation. Yes, the crew of House has contacted the vasculitis foundation so that in their last episode they can do one more thing to help spread the word about this group of rare diseases. Fitting that it should happen during awareness month!

Monday, May 14, 2012

Life and Such

I don't think I'd wish for anyone to ever have to go through the social security process. It's super stressful.

I have to go to a hearing in front of a judge to decide. I really need it for the medicare, in a few months I won't have any insurance and I really can't afford my doctors without insurance.

I thought about trying to go back to work with the kiddos, maybe I could get enough money to buy my own insurance, but that idea was vetoed. Instead, I think I am going to start up a photography business. I like taking pictures after all. I would mostly do candid photos of kids and pets, but wouldn't be opposed to doing event pictures too. This would at least help me get some income.

Think positive and outside the box. Usually you will come up with good ideas that way!

In more awareness news, I am trying to think of a t-shirt logo for the families and friends of people with vascultitis. There are shirts for the patients themselves to wear, but they don't necessarily work for the caretakers and supporters that don't have the disease but are effected by it anyway.

I've got to wrack my brains on this, any suggestions?

Wednesday, May 2, 2012

Vasculitis Awareness Month!

It's that month of the year again! Vasculitis Awareness Month, or May as normal people call it.

Look guys, I'm internet famous for vasculitis. Not exactly what I was planning on, but hey. Someone even asked me if they could put my video in a documentary about vasculitis. I said sure even though I think I look and sound like a complete goob in it.

Sorry if I didn't look like what you thought I did. When I made this video I didn't have plans on it being posted anywhere, but since the VF put it on youtube I figured, "What the hey- People are gonna see it now."