3-3-06 Mar 3, ’06 10:20 AM
for everyone


I didn’t have time to write any thoughts about my entry in yesterday’s blog.  I was pretty happy that Rituximab got approval.  (Thanks to Jill for sending me the link)  It doesn’t really change anything for me, since I was already taking it, but it does change things for all the people who need another option to treat their RA. It didn’t say so in the article, but each course of treatment costs roughly $10,000, this adds a little clarity to why the VA approved my request to try it.  The last med I took was called Humira, Humira cost the VA about $1,200 a shot, and I took one shot a week.  So, for a year, Humira cost the VA $60,000.  I will probably need to treatments of Rituximab this year, so the VA saved about $40,000 by letting me take Rituximab instead of Humira.  It is also a reminder of how fortunate I am to receive medical treatment at the VA.  It would be incredibly difficult for us to pay all the co-pays for my drugs.




Today is a bad day.  I woke up in a lot of pain this morning.  So intense that it made me nauseous.  For the first two hours I was awake this morning I was clenching my teeth.  It was difficult just trying to get up and do simple things like make the bed and load the dishwasher.  Going downstairs to find my pill tray, I felt like a drug addict needy for a fix, needy for the relief that the drugs could hopefully provide.  It is now one thirty in the afternoon and I am still in my pajamas.  I want to take a shower, but I am not looking forward to undressing myself, squeezing the shampoo and having to climb the stairs to my room to find some clothes. 


Yesterday was a long day.  I left the house at about 8:45 am and didn’t get home until about 9 pm.  I had an appointment with Dr. Fast in Wichita, and then did some shopping, came back to Hutch for my hair appointment, then went to my parent’s house to pick up Cody for his hair-cut, then went to an evening basket making class with Kasee.  Might sound like a leisurely day for some people, but it has made me dead to the world today.  I also forgot to take my meds with me when I left the house, so missed taking them yesterday.  Which, for me, is pretty much a crisis.  I should have found time to come back home and get them, but you should all know me by now, I was determined I would just take them late and I would be fine.  Also, a basket weaving class was probably not a good choice for someone with grip issues.  So, my hands are pretty bad today.  Of course, I have to admit that I took my basket apart in class, and then again after I got home, in an attempt to make it look better.  So, it is probably pretty hard to feel sorry for someone who is her own worst enemy, huh?  But, hands aside, the other pain today is probably from over-exertion yesterday and the missed meds.  Isn’t the first time that I have forgot/missed a dose, if I am being completely honest.  It happens occasionally, I am a forgetful person.  But, usually the pain isn’t this excruciating and instantaneous.  So, of course that is troublesome to me and instead of chalking it up to a bad day, I am busy obsessing about what this means. Does it mean the fibro pain meds are masking all of this RA pain, and this is how I would feel everyday without them?  Does this mean the Rituximab isn’t working?  Why am I such an idiot?


Probably crossed your mind why Kasee didn’t kick my ass out of the basket class last night.  In her defense, despite her frequent inquiries, I didn’t tell her how bad it started to hurt last night.  I also didn’t mention I hadn’t taken my medicine.  So, yeah.  Now, she will probably be out here shortly after reading this, to kill me.  I don’t know why I am so stubborn.  My Dad is stubborn too, and he does things like this.  In fact yesterday, the day after getting steroid shots in his back, he was digging a trench in the back yard to put in a sprinkler system.  So, it is hereditary. But, I know how infuriated everyone must get with me, because that is how I feel when my Dad tells me what he is doing.  But, secretly, you have to admire the man’s work ethic and tenacity, don’t you?  


I asked Dr. Fast yesterday if there was an expectation that in order to maintain feeling fine, I would have to pretty much just sit idle and watch the world pass my by.  Of course he told me to choose a different definition.  Instead of making that be a bad thing, I should define it as doing what I need to do to take care of myself.  But, easier said than done.  It would be hard for me to not feel worthless and idle if I can’t do the things I want to do, like trying to make a basket or helping BB with the fence.  What am I supposed to do, sit in a chair for the rest of my life?  What hobby is there for me?  Reading?  TV watching?  People watching?  How grand.  Maybe I should just kick all my hobbies and interests to the curb and join Minnie and Ida down at the rest home and play some cards.  But, oh yeah, that’s right!  I even need a special disk to hold the cards, so I don’t even do THAT like a normal person!  Even that makes me TIRED! 


I want to do REAL things.  Exciting things.  Okay, so maybe making a basket out of pine needles isn’t THAT exciting, but you know what I mean, right????  I want to make things, and go places, and not have to pay for it.  But, it even sounds stupid to me.  I endured this pain and frustration so that I can have a basket made out of pine needles.  It is incredibly stupid.  But that is all I know how to do.  I guess trying to make a basket feels like I am at least trying.  No matter how painful, how frustrating, at least I haven’t given up yet.  It hasn’t beaten me yet. 


Poor Dr. Fast.  He probably needs a raise.



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