I am aware that I am less than some people prefer me to be,
but most people are unaware that I am so much more than what they see.
— Douglas Pagels

Monday, July 15, 2013

Renal Clinic July 2013, and Circumstances

I'm frustrated about my latest appointment. I was doing okay until the nurse discovered that my Inspra script wasn't filled correctly, which means I've been taking much less than I what I was prescribed. I have no idea how it happened, but I'm so mad at myself for not noticing that the dosage was wrong. With a migraine and running on 2 hours sleep, this news derailed me. Dr. F wants me to titrate the Inspra, so the script was rewritten for less than what I would have been on, and Medicaid doesn't pay for it so I have to take it to my local doc office and apply for patient assistance. That will take another several weeks. I'm upset that I'm going to lose another 1/3 year (next appointment is in 4 months) of potential quality of life that I could have gained had the script been correct to begin with.

I am so grateful to friends for getting me to the appointment on such short notice. Finding a way to Jackson is getting harder, and it is extra stress that I don't need. I have an ultrasound on the 24th with no transportation as of today.

Dr. F wants me to start using the Cardy meter regularly again, so I'll have to invest in the calibration solutions soon ($88 plus shipping...ouch). My potassium continues to fluctuate daily.

Although my weakness is profound, everyone said I'm doing better where the paralysis is concerned, so I'm trying to slap on a smile. I met a new doc in training (Dr. H), and he was nice. He agreed that I basically have to choose my own poison. I can follow a muscular dystrophy diet or a kidney disease diet. They contradict each other, so it's a no-win situation. He's not familiar with Primary HKPP and I wouldn't have expected him to be. No big deal. He and Dr. F both seem like sweet people, and I'm thankful they are trying.

I wanted to bring up several things, but I didn't go through my list at all. By the time three doctors were in the room, I just wanted to go home. I came across as obnoxious, I think, although that is never my intention. I'm just tired, agitated, in a lot of pain, and understandably afraid of my future as a single, disabled, chronically ill woman with no income and no relief in sight. I'm a level-headed person, but Grace has never been my name, and it probably never will be.

I'm going to talk to Social Security soon about any possibility under the sun of finishing college online through federal financial aid. I expect them to say no, but I want it in writing. To be stuck here unable to care for myself, watching life waste away, relying on people around me for everything is not living. I don't have a prayer if I don't figure out something.

I'll continue free open courseware regardless. I've downloaded some courses from MIT and I'm diving back into Psychology, Social Studies, and Art Therapy as soon as possible.

I will never accept the way things are at this moment. I will continue to fight for a life worth living.