Is it a question of intellect that I can quote endless movie lines but not one passage from a book? I don't think it is just me. My husband is also a pop culture quoter (is that a word?) and I don't think he has memorized anything from a book, poem or short story in his life,either. Yet we both can shout out lines from Raising Arizona, Sixteen Candles and Blazing Saddles. So is our (my) generation too dumb to memorize, can we only remember spoken word? This really bothers me because I am an avid reader. And why do we always say "avid reader" ? Why not voracious reader?
It is horribly boring to talk about weather and even worse to blog about weather but I will, anyway. It snowed, again. I know that I am not important enough to be singled out with this wrath of weather but it is really hard not to take personally because I hate it ! My joints are screaming in pain and there is not enough pain medicine in the world to cover me.

The commercials that are on during the shows I watch are indicative of one thing, I am really a 64 year old man. I know this because of the AARP life insurance, scooter/wheelchair, diabetic supplies(for free!) and erectial dysfunction ads that are on during all my favorite programs. This is my fault. I am obsessed with true crime like the show "the first 48" and I do love the History channel. I guess I am flattered that the commercials are not constantly telling me to sign up for an online school (since they think I am too old to go back to school) but I am sick of them asking about how much asbestos I have been subjected to and whether I think I have mesothelioma. February is a horrible month so I am going to cut myself some slack for watching so much television but it is reminding me that I might want to have a conversation with an actual human being.
Peripheral neuropathy is one of the shittiest symptoms ever! My left foot has not gotten warm in about 4 months and it is this cold searing pain (not just cold, that would be too simple). I am also loving the fact that I cannot control my own body temperature. I am either freezing or dripping with sweat and sometimes, just for fun, both at the same time! My mantra is : Lupus is fun, fun, fun! Really my mantra is: I ma sooo tired, can one die from being tired? That is a terrible mantra.
We received our six boxes of Girl Scout cookies yesterday and I am proud to say I had one. That is it! Seriously, only one. They are all Tagalongs even though I like the Thin Mints, also but I am not eating them, right? I have probably gained 10 pounds since being on 20 or more mg. of prednisone since October. Aagh! Miserable without end!

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.

I have been home with my sons for 4 days in a row thanks to being pummeled by a winter snowstorm. I love my kids as much as the next gal, really, but this is bordering on real pain. My sons are 15 and 11. Their idea of a morning greeting is by farting in my direction. They spend hours upon hours in the same pajama pants playing Call of Duty with invisible people. This is not conducive to "real and quality" family time. It is time for them to go back to school.
I wanted to mention that I am a vegetarian and that I hate mice. Alone these two statements probably don't sound like they have anything to do with one another. Not so ! At least not in the irony of chronic illnesses! See, there are these really neat super fancy drugs called monoclonal antibodies. They are sort of like designer drugs. The drug that my rheumatologist thinks might help me is made from mice protein(really, I can't make this up) and somehow it attacks my unhealthy cells (I don't really understand it) and well, whatever, is supposed to work better than the last 5 or so drugs I have been on. Normally the rights of animals are a big concern to me but, I think it is a sign from someone or something that I don't care at all about the rights of mice! First off, mice are sneaky. I can remember a certainly vivid prednisone induced psychosis when I was up sewing or talking to myself at 3 in the morning. If you have ever been on a high dose of steroids you know of which I speak. Anyway, there were mice rooting through the pantry, I could hear them just feet away from me. I would go look and they would be gone. I love dogs, cats, turtles, birds are ok but I don't want any for pets, but I hate, hate mice! If the pharmaceutical gods see fit I think I should be put on the mouse protein drug. It sure would be better than chemo and steroids,or maybe not. I would certainly like to get the chance to try it.
I wanted to let anyone know that could be reading this that I do not give advice. I think it has something to do with being diagnosed at 18 and not a very mature 18 year old at all.
Actually, I am not a particularly mature 40 year old, but that being said, I hate advice and try never to give or get it. So, if that is what you might be looking for in my blog, It ain't gonna happen! I will probably bitch about my symptoms, the crisis of America's Healthcare and other things but no advice.
I am saying all this on the illusion that someone might be actually reading this. Oh well, at least I can entertain myself with my ranting !

Introducing my blog.

Hey my name is Eva and I have been battling Lupus (an autoimmune disease) for 20 years and it sucks. I wanted to reach out to other people who have chronic illnesses and might want to vent, too. I am not here to give any any any advice whatsoever! I am hoping that there are other people who find the irony of chronic illnesses as oddly amusing as I do.