There is a great bit of anxiety involved with having Lupus. I for one get incredibly anxious whenever I go get lab work done or see a specialist. The anxiety is due mostly to fear of having a bad time. Granted going to the doctors is generally never classified as having a “good” time but things are tolerable for most. Case and point: my rheumy who I was seeing at the UW left the practice and now I am scheduled to see a new one in a couple months. I have been having nightmares. Not to mention the paperwork that is being waded through for lab stuff… If it isn’t the Lupus that kills me, it will be the paperwork!
Why is seeing a new doctor so scary? Mostly because in my case the old rheum who I saw was really good and actually listened to me about half the time. Finding a specialist who listens is like finding gold in the middle of a desert. The majority of specialists do not give a care in the world to what I am saying; they just go off the test and lab results (plus their own cocky opinions.) Communication is as simple as teaching an elephant to do back flips. It is a little itch haunting in the back of my head with this constant repeating monologue of “You just have fibromyalgia. Go off your meds. You don’t need pain management.” I have had so many bad experiences with different rhuemies and specialists that if I have one more… I think I will simply loose it. No person who only talks to me for five minutes can dictate how I feel or judge exactly what is going on with my body. There have been more than a couple specialists I have seen while not flaring to the enth degree that have just dismissed me. When I have had the misfortune of only being able to see them while flaring… it is hard to accept an apology from a person who obviously didn’t give a shit.
Paperwork is the bane of my sheer existence. I don’t loose paperwork generally but the medical system is amazing at doing so. Called in for some routine lab orders to make sure they were in before I went to sacrifice my arm (and blood) for science. To begin with I was not having a good day… my four legged best friend crossed the rainbow bridge the day before and I was incredibly sad. The operator who I got was nice and polite as she informed me I would have to wade through the UW maze to get my orders. Okay, fine. I’ve run into this before at various times. Most of the time the orders just get lost in a file or never get ordered by the UW because someone forgets. Sigh. My normal generally calm demeanor just lost it when I got off the phone. This lab work is yes, crucial to monitoring some of the sub-activities of what is going on with my SLE… however having to wade through mazes to get poked, I’m done with it. Stuff like this makes it so easy to want to give up with Lupus. Not only do I have the pleasure of fighting this disorder but also fighting for the necessary stuff to help keep my quality of life up. I heard from the UW on Friday (the call was placed on Monday) and they are working on it. This may be a couple weeks… at this point I’m really in no rush to get poked. However I do need to get this lab work done before I go to the rheum again because I will get a “without the latest results we can’t do anything here, but if you would have gotten you lab work done we might be able to do something” speech. *insert Katyann pulling out all her hair here ____. It’s not like I haven’t been trying not to get things done.
The fall weather transition has started and the rain. I am kissing my summer spoons goodbye and spending a lot more time too exhausted to move on the couch. Slowing down is in some ways a very good thing for me, I spend a lot more time thinking and a lot less time doing. As crabby as I may have sounded with this blog post, there actually is a smile on my face because I know better days will come. Winter is permanently set in the calendar year, but it passes.