Friday, January 14, 2011

Uncertainty and reflection

It's been a while since I've posted. I've sat down many times and started to write. It's not as if my mind goes blank when I try to think of what to share. Its more like a thousand thoughts go running through my mind and I'm not sure where to start or how to make sense of it all. The last three months have been so simple and uneventful and yet confusing and full of discontent. And yet I have much to be thankful. I'm sitting here feeling sorry for myself, when despite everything, I've still been blessed with a lot. I may not have a job, or anything looking promising in the future, but I'm not homeless, or destitute. While I'd rather be off on my own, and often feel guilty I'm taking advantage, I have a mother who doesn't mind, and in fact enjoys, that I still live with her.

Three months ago, I faced the loss of my job wondering how it would all work out. Naively thinking I'd only need unemployment for a few weeks at most. That I'd find another job again soon. Sadly that has not been the case. And facing one disappointment after another as jobs I've applied for and hoped at getting disappear, has been unsettling to say the least. The emails from search engines keep coming, but they offer little in the way of hope. The simple fact that there is little out there should help me feel better about not having anything yet, but it doesn't ease the panic of not knowing how I'm going to continue to pay my bills and what I will do should I get sick in the meantime. I couldn't afford the COBRA payment for my insurance, and have no hope it seems of finding a job with benefits very soon. I finally curbed my pride enough to apply for medical assistance only to be denied because my unemployment benefits are too much for me to qualify. I don't have enough to purchase my own, but have too much to get the help I need...go figure...

Faced with another appointment scheduled with my new Rhuematologist, who I still have yet to see, I'm not sure what to do.  I don't want to have to reschedule it again, and yet I'd be hard pressed to come up with the $280 it would cost me to go. I need to get in and get settled with the new dr, so that she's familiar with me and my case before I should happen to get sick, God forbid. And yet I can't even afford to do that. I need to go so that I can get the prescriptions I need to continue on with the health I have now, and yet if I can't do that then I will surely get sick and we all know I can little afford what would come with that. I live with the constant fear of the what ifs of living with chronic illness. What had been a quiet voice in the back of my mind before (when I had a job and insurance) seems like I can't shut them down anymore. What if I get sick? What  will I do if the fevers start again? The pain in my chest, the racing heart and kidney problems of the last time, scare me to death. What will I do if it happens again when I have no way to help me pay for it?

And I've also been fighting anger about the whole situation. Angry that my life is not as simple as just needing a job to pay bills and other things. That my life is far more complicated than I ever could have imagined it getting. That I have to rely on things like my multiple medications (5) and other supplements (7) to help me feel somewhat normal, and have to go to quarterly dr appointments and various lab work to keep up with it all. Upset that I can barely remember what life used to be like, before I got sick. When things were "normal". Angry that swallowing 12+ pills every night, and wondering before each activity or chore if I'll feel alright in the morning, questioning what I can and can't do, that all of that has become my new "normal". Things I now do by habit and necessity. Upset that I'm forced to question whether I can handle doing something, or weighing the enjoyment of the moment against the risks of what may happen. I miss being able to do something because I want to, without having to question how it may make me feel later, or if I can actually do it at all. I miss being able to do things on the spur of the moment, decide to stay somewhere without having planned on it. Instead I have to be prepared if I decide to go somewhere overnight, I can't decide to just stay over at my sisters cause we're hanging out too late, because then I'd be missing my prescriptions and I know I'd feel like crap in the morning. I wish things were different. I wish I didn't have to worry about sickness and medications and doctor appointments. I wish I had perfect health. I wish I didn't have to worry about how people will respond to me and my illnesses, and having to wonder if people will accept me for me, regardless of my health.  (I did warn you I was sitting here feeling sorry for myself right?) sigh...

But I need to remind myself that I am indeed blessed. I have a family who loves me, friends who see me for who I truly am, and often forget I have any health problems. A wonderful Church that lifts me up and encourages me through it all. A PCP that, despite having not seen me yet either, has given me refills on one of my medications because I really needed it and he understands I can't afford to see him right now. A mom who's more than happy to take care of me when I need it. While I'm making far less than before, with loan deferment and such, I'm able to continue paying my bills on unemployment. It could be far worse. I may doubt and question what is going on in my life, but I know that God is there and is taking care of me. I am blessed. I'll try my best to remember that.

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