A Follow Up:
Sometimes life feels like a tidal wave.
When I was younger I used to think to myself, "Someday I will wake up from this dream." It reminds me of the character Jenny Curran from Forrest Gump saying, "Dear God, make me a bird. So I could fly far. Far far away from here." It is a child's fantasy that everything would stop being so difficult.
But my secret is that I never stopped. Even now I secretly hope that SOMEDAY I can just STOP being sick. Secretly I have always believed if I am perfect enough - if I do the "right" things (health wise, ethically, etc) even though I'm in massive pain, I will SOMEDAY wake up and be disease free and have FEWER or no medications to take. And I will have no joint pain and the traveling nerve pain will be GONE GONE GONE. And my face won't feel numb and hurt. And I won't have to WORK SO HARD any more. It will just happen.
I suppose I have always believed I need to EARN the good health that others just seem to HAVE. And I KNOW this is stupid. I realize it WILL NOT HAPPEN. Nothing I do will ever make this go away. NOTHING.
I will never wake up from this dream. I will always just open my eyes and get out of bed and keep on. The funny things is - the lifestyles I have committed to have become habits. I don't drink much, I don't have many "vices." People call me a "goody two shoes." I don't even take paper clips or pens for personal use from my desk at work because I believe if I take from life then life will take from me. I just get them from the store.
I don't want to become rigid or inflexible - I simply want to be an ethical person. (And - wake up from the dream).
FAST FORWARD TO THIS WEEK:
It is 9 a.m. I cannot remember my middle name or my social security number. I have made an appointment with my primary care physician to discuss the Patient Assistant Forms. I have also realized my medication hoarding and fear of running out of medication has backfired and I have taken expired (or generic) antiseizure meds. I've had two seizures back to back. On the phone with her receptionist I'm not able to explain that another doctor billed the insurance incorrectly and they needed to resubmit the $129 from my last visit.
At 4pm I had a migraine from hell. I didn't even recall the 9 am phone call except the receptionist called to say that my doctor is firing me and will not make any more appointments with me until my insurance pays. I cried. I have no primary care doctor.
The tidal wave crashes over me. Who will help me? Who will write prescriptions for me? Who will care that I am having seizures? I have no one to speak on my behalf. I realize that it is my fault that I didn't tell them to resubmit. I also got mixed up from the other specialists. I apologized that I missed them. The receptionist said, "If you were able to tell other doctors to resubmit and you missed her then she clearly isn't an important doctor to you. Maybe you shouldn't have overlooked her." I said I wasn't trying to shirk the bill and offered to pay with cash but explained that my insurance is legally obligated to reimburse the visit.
I also was much nicer than I wanted to be because my parents use this doctor. I am afraid for them because the doctor could also fire them. They are older and if she is firing people they could be next. I have ALWAYS tried to be a "good patient" and not "difficult." I don't want my parents to be without a doctor they trust because their doctor is angry.
So I am looking for a new doctor on the brink of no COBRA. I called and found someone for August. I said to the receptionist, "Does this doctor work well with chronically ill patients? I'm not well all the time. If he doesn't like sick people I truly need to know. He needs to work with my specialists whom I like."
I am terrified not to have a primary care doctor. But I also think I have good specialists. If an emergency happened I think they would come through for me even though they are busy. And, mostly - I realize that *each time* I got sick with strep or something I NEEDED a doctor for this year (5 times) my primary care doctor couldn't work me in. Each time I had to use the walk-in clinic down the road. So in a way- she has become someone who writes prescriptions for me and not someone with whom I have a relationship with or whom I know or knows me or trusts me or whom I trust. (I can't HAVE strep for 9 days. I need to be seen).
I don't know her staff and they don't know me. And it makes it easier. She wasn't even the one who caught my dad's tumor, an emergency clinic was. I don't think she is a good doctor. I think she prefers patients who have diabetes and high blood pressure or cholesterol checks. If I am sick (or truly chronically ill), I cannot count on her. And if I NEED a doctor - she will fire me when I need one the most.
And no amount of me trying to be PERFECT or being a good patient will change that.
There is no point to this blog post. I feel a little hopeless. All I know is that everyone dies. But NO ONE has taken as much care of their health as me. I think I will stop trying as hard and spend more time enjoying my friends and enjoying the small things. And if I cannot afford my medications - I might not worry so much. If I tell my doctor I can't afford something and they don't help me come up with an alternative - I will see what happens if I DON'T take it.
I've tried it the other way and it got me fired from a shitty doctor. I'll never wake up from this dream. Maybe I can just "enjoy" the good parts of the dream and deal with the bad parts of it the best I can. I'm tired of "being a goody two shoes" who does all the work and none of the play.