Eva in Wonderland

My husband had back surgery today and is fine. It was incredibly weird being there for him at the hospital doing the reassuring hand holding thing. (sorry babe if you are reading this, not at all implying wimpiness on your part). I realized that having surgery for me is normal. Then I thought to myself,"It really is not normal to consider having surgery as normal!" Yet, as a sickie, that is how I feel . Most hospitalizations feel pretty routine. The idea of someone being "fixable" is also odd to me. When one has a chronic illness there is no fixing. I clearly remember the first time a doctor told me that he was not really trying to make me better, more like just trying to "maintain" me and keep me from getting worse. That really goes against what medicine is supposed to do! I think most people consider their doctors as someone who can make them better. This is what is so messed up about chronic illnesses. I saw one of my orthopedic doctors when I was waiting for my husband to go into surgery. I mentioned to my husband's doctor that I see three of his colleagues in the same practice. He referred to me as a groupie. That is quite alarming yet true. Being a patient often feels like a full time job. It was interesting, for today, to not be about me!
I walked outside this morning and there was more snow, what a surprise (read: sarcasm). I hate winter. Like a little old lady I constantly worry about falling and having to get a third knee replacement. Falling is something I obsess about. I am 40 but feel like I am 92. The outside of me is just a facade. My dogs, on the other hand, love the snow and tunnel through the back yard making paths. They play like eight year old kids and have a blast. I wish I was a dog but only if I had an owner like myself. I am NOT the pack leader. My dogs are cute and therefore rule our house.
Medicare turned me down for the mouse drug. Rituxan is the actual name but it is so much more fun to call it The Mouse Drug. I am now filling out forms to have the drug company take pity on me. I know, the idea of drug companies having a conscience is absurd but desperation is called for. I am a little jaded. Now I have to wait and be patient. I am not good at patience.

I suppose I should explain "Eva In Wonderland". The blog title is mostly in reference to the mass of pharmeceuticals I ingest everyday. I loved Alice in Wonderland and Through the Looking Glass and the "Jabberwocky" poem I had memorized, at one time. Taking all these drugs constantly reminds me of the passage where Alice eats from one side of the mushroom and it makes her tall, the other side made her small. I feel controlled by the drugs and often wonder where I end and they begin. Where am I in the sea of drugs? The "relationship" I have with steroids has to be the strangest. I love and hate prednisone. Steroids are like an abusive boyfriend who beats the shit out of me, yet I just love him so much! No doubt, prednisone masks my pain, takes down swelling and gives me more energy. It also causes me to have 5 different sizes of clothing in my closet, rounds out my face in the form of a pumpkin and is ripping the hell out of my bones. I have avascular necrosis in my knee and both ankles. Sure, this could be partly due to the Lupus but it is the steroids, also. I am tapering off of 20 milligrams over the next 3 weeks. I know that it is the best thing, but I also know how hard it is to reduce the dosage. It is a Catch 22, damned if I do, damned if I don't. There was a time when having access to lots of drugs was a great thing, that time is not now! I guess that would be another irony.