Again so much time has passed without my posting. The truth is that I feel so down I just haven't done it. There, I admitted what we (the chronically ill person) are NEVER supposed to admit, I am down. All of the past few months events have left me not only physically worse for the wear, but also emotionally and spiritually spent. It is really scary for me, I am not someone who gets down and stays there, I'm more of a "okay the pity party is now officially over, let's get up and do something constructive" type. The truth is I have absolutely no idea what to do.
My medication is not being covered again, so I am trying to find $1200 a month to pay for something I have to have to function, while the insurance company and my doctor duke it out. I have absolutely no control over the outcome, which is terrifying. In the meantime, I am also in the wonderful Medicare Part D "donut hole" so NONE of prescriptions are covered at all. This will continue until I pay $5500 out of pocket (oh did I mention I DON'T HAVE IT!). I HAVE to take most of my medications, for instance without my hydrocortisone my adrenals don't function. Not taking my medication isn't an option for me. Again, I have little or no control over this.
Each day seems to bring another health issue (no big shock considering what I am going through) which adds to the already enormous stress level. I am bone tired, dealing with all the physical issues, which range from systemic thrush, to a shoulder in need of surgery, to immune system issues to fevers is enough without the constant money problems, the fights with the insurance company and the never ending trips to the doctors. I want a day off. I want to not worry for 24 hours. I want someone else to slay the dragons for the day. It won't happen, but I can still wish for it, can't I?
So my posts have been few and far between. At least when I have the medication I can actually sit at the computer, without it I cannot for the pain is unbelievable in this position otherwise.
Most of my doctors are pretty good, but we have a health care system were each doctor is so specialized that they only focus on their particular area of expertise. I wish I had a good internist who pulled it all together and saw how one thing is affecting the other, but I don't, and despite many attempts to find one, I simply haven't been able to. I can't even get angry at the doctors, the system itself is so broken that they do all they can. The truth is that chronic illness isn't handled well in our country. We are a deal with it after the fact nation. We don't do prevention well. We don't take the time to study the effects of one issue on another.
Those of you with chronic illness will understand what I mean, and, I hope, those of you without may learn something new from my perspective. In the meantime, I will keep putting one foot in front of the other and praying for better days ahead. It's all I can do in the end, the rest is in God's hands.
