The American Dream

I've been thinking about a lot of future-related things lately. Having friends who are struggling to find their path along with news about the economy and coming sequester is making me somewhat introspective.

What would happen to me if I were furloughed? Not a pretty picture or a thought I really want to have. It could happen to me, though, depending on how the cuts go. Do I find it likely? No. Is it still on my mind occasionally? Absolutely. We work on many federal contracts and I support them. I believe I would be paid out of our reserve funds before I would be furloughed, but there has been no clear pronouncement of that fact. I just have to trust that they'll do the right thing.

Losing that large a chunk of my income would not completely ruin my finances, but it would leave me less able to pay my bills. I already know I would have to cancel services and cut back majorly... probably eat a lot of rice and beans... and it would not be fun. I feel for those people who haven't been as fortunate as I or those who are just starting their careers and face this issue. It's not fun to live paycheck to paycheck and even less fun to lose even a small bit of a check, or to have it delayed.

My own start in the professional world was rough. I did not make enough money to make ends meet or to pay for my medical stuff. It's hard to be healthy when all you can afford is $1 or less per meal because you're paying for so much that you can't help and you can't control.

I keep hearing people talk about the American Dream and how it is the dream that your children will be better off than you are, able to do the things you weren't. I feel very often that my parents' dreams for us have been stunted by the choices of their contemporaries. I don't have the money or the energy to further my education. I would perhaps have the energy if I was able to quit work and just focus on school. I can't. I will never own a home unless I somehow fall into some financial windfall or someone just gives me a house that is near the medical care I need. It's a catch 22. I can't afford (really) to live in a city, but I must not only live in a city but in particular cities to be able to access the care I need. Not to mention having to live here to get good enough health insurance through my employer.

Is this really what we want for ourselves and our future? I'm trying to be a productive member of society, but I have trouble keeping my head above water because my life moves from crisis to crisis because of illness. I'm finally feeling stabilized now and looking at the havoc my various issues (not just health but things like unemployment) have caused and it's frightening to know that I'm one of the lucky ones that are better off. Yikes.

Sad and Scary

The past week has been extremely busy for me at work and have been eventful in the PIDD community in the most unfortunate way. I found out that a couple of very different patients passed away. It weighs heavy on my heart in many ways.

The first was a man named Mark. He was a CVID patient like me... and he was doing very well. So well, in fact, that there was no issue with him getting an outpatient surgery. He had the procedure and developed meningitis. This was a well-controlled patient on adequate replacement. That's part of what makes it so scary for me. He died because of a "routine" procedure.

The second was a 12 year old boy named JP. JP actually had an immune deficiency that is considered by some to be less severe than mine. JP also had other complications and issues that he was constantly fighting. It's so scary because his pneumonia started out much the same way my first big sickness did. He was fine and then, suddenly, he wasn't. I am just so struck by how much his family must be hurting right now. I can't imagine losing a child, a sibling... It's got to be amazingly difficult.

Situations like this give me a big case of the "What Ifs." What if I hadn't gotten better? What if my family doctor hadn't been on top of things when I was in middle school? What if I had gotten meningitis after one of my many outpatient procedures? What if my family had to make the decision to remove life support? What if? I am both jarred by these stories and thankful that I'm still here.