One of the things we rarely discuss is the actual cost of being sick. Think about getting a head cold, everyone gets one, to varying degrees. Some [very luck] people can power through it with 1-2 days of rest and some vitamin C and niquill. Others are down and out for a week basically dying [me!]. But outside of the physical exhaustion, there is the actual monetary cost. The loss of work, shifts, sales, and everything in between. Add to that the emotional cost.
The emotional cost of being sick, chronically or otherwise, is never really understood. I’m not a very public person when it comes to illness. I have always had to deal with a crap immune system, going down like the titanic over strep throat [every year, at least twice a year], and constantly being out of school due to one problem or another. When I graduated high school i realized I had missed almost a quarter of my high school experience due to all the time out from being sick. Middle school as well.
But one of the most poignant things is the monetary cost of all of this. As a result of this disease, I have not been able to go back to work since being laid off, despite trying my hardest to find a position that would work for me. On a side note, it’s been over a month since filing for unemployment and I still have yet to receive my APPROVED unemployment benefits. When inquiring how much longer due to rent etc, I was told to get a loan… Additionally, add in the thousands and thousands of dollars I have been charged for the recommended blood tests, exams, procedures, and the costs they “forgot” to tell us about, and now I am in the hole. And this is exactly what happens. It’s completely overwhelming. When I was making around 1k a week a $250-$500 procedure isn’t that bad, but when nothing is coming in, it’s a small fortune.
Let’s also add in the fact that I have over charged by 2 places, misinformed about the ACTUAL procedure cost twice, my insurance has vehemently refused to cover LITERALLY ANYTHING [i.e. blood work, medical necessities, medications, diagnostic procedures, physical therapy etc], and threatened with collection. The costs are ridiculous, the insurance charges insane, and if for some god forsaken reason the code is wrong, forget about them covering anything. Try to call to find out? They can’t tell you the cost, only you haven hit your deductible HASN’T BEEN HIT BECAUSE NOTHING IS COVERED. Need an urgent endoscopy because you can’t eat or drink anything? Forget it, it’s 2k plus, and even with insurance and if you need financial aid, be prepared to wait a month to find out and be continually harassed about it.
So where does that leave me? Emotionally distraught, relying on my parents at 25 for help, trying to afford an apartment lease I can’t break without a fortune, spending my grad school fund attempting to deal with this, and conserving costs wherever I can. And I am isolated, lonely, and mostly annoyed. Even on a low budget, I should be able to go out with friends and hang out. Go to the pool or watch a movie and pop some popcorn. Instead I am trapped at home or with someone 24/7 to assist me, bored from not being able to do anything, and tired from even trying to cook a simple meal [which for now I cannot eat]. When someone comes too say hi there isn’t much we can do.
But what is the real cost of all of this. If we take some time to think about how much support we try to show to children in hospital, or teens suffering through horrible cancers etc, it really is quite a lot. And that is essential for them. Actually, support is essential for everyone going through a horrible condition, illness, or anything really. So I have searched out support to help, but unfortunately, people like us tend to all be in the same boat of lonely isolation. Relationships are hard if not impossible, and it truly takes some INCREDIBLE people, no heroes, to stay by our sides and keep giving support. The emotional drainage, the physical exhaustion wears us all thin, caretakers, family members, friends, people who are desperately trying to understand but just can’t. [I like to describe this as getting into a car accident daily (surprise, you never know when its going to happen, so pretend you are driving a car 24 hours a day 7 days a week) while simultaneously having menopause and giving birth [or for the guys out there, falling off a cliff and hitting rocks for days on end] plus you know it’s going to keep happening and you cannot stop it (talk about a real depressing adventure).
So we’ve established a sort of cost, but there is one thing that is the MOST important. Staying strong and knowing that CRPS can hurt you, wear you down, drain you, beat you down, and try to drown you, but it can, and will not kill you unless you let it. And so we move forward. Always. And we never stop trying and we never give up.
Stay strong my friends.
Life On Fire 