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Tuesday, June 28, 2011

Bent out of shape!

     Well, this image really tells the story, folks...on a number of levels.  First, physically I truly do feel "bent out of shape" and not very mobile.  My mom used an expression when she did not feel up to par that I always thought was quirky but it soooo works in describing it...A WET DISH RAG.  You know how a wet cloth seems limp, and shapeless..well that is me at the moment.  My shoulders and hips are flaring and not letting up despite pain patches, ointments, rubs, hot tubs, and now an increase in prednisone.  
     Mentally I feel like the gal in the cartoon because I am really worn out from the pain.  I am trying to stay upbeat and on top of the frustration but sometimes it becomes overwhelming...I just ordered some meditation "cards" that I think will be very interesting..I will keep you posted on it.  I really like guided imagery.  I have several CD's and they truly help me to relax and even ease pain for me.  I think it may be because muscles tense up when you have joint pain and so when my shoulders, in particular, are bad the muscles around them and even in my neck are sore and achy.  Doing the meditation of guided imagery works really well to take me "to another place" and relax.  I do not like pain medication as it makes me feel "loopy" and really bothers my stomach so I have needed to find alternatives like gentle massage, guided imagery, etc.  
     The reason for all of this is the need once again to switch medications - this time after only 2 and 1/2 years on Remicade.  It took a week or so (which is thanks to my amazing rheumatoligist and his staff) to get approval from our insurance company after we made the decision that without the pred. the remicade was simply failing.  
     I now have to wait three more weeks till I start on the Simponi because the protocol requires that your current medication has to be out of your system and since my next remicade infusion would have been three weeks from now I have to wait until then (despite the fact the stuff no longer works!) The worst part of this is that three weeks takes me into a very busy time at work, year end reports, etc. and so I am not looking forward to handling that and dealing with what is likely to be an increased pain load.  
     So, until then I may be venting here as this is yet another outlet for me to access while I wait....which brings me to another issue..waiting.  Why is it that so many of us with RA feel like waiting goes on and on and on.  We wait for the flare to start, to end, to get our meds. approved, to take our meds. for the meds. to work..or not...to see our doctors, etc.  Waiting, which I hate if I am totally honest, is really a part of the whole RA picture so we best get used to it and figure out how to manage it....Thus the meditation cards, my ever trusty Kindle reading device, my Ipod, etc. so that the waiting is not so tedious...
     I am worried as well about the efficacy of Simponi.  I have heard from very few people about this medication so I am a bit leery about it.  In addition, this will be my fourth TNF biologic and I have to wonder why we are sticking with this class of biologics?  I cannot find a lot of information out there about the likelihood of this working and how many times patients have success with more than 2 or 3 TNF meds. So that remains to be seen but I will post here my response once I get going. I do like that instead of WAITING for the infusion process (3-4 hours every 7 weeks) I now am back to an injectable now just once a month.  So that is good news too.  I think I will just sit back and count my many blessings and see if that helps to pass the time....till next time....
Nan

3 comments:

deb aka murphthesurf said...

Will hope that this new med will work for you. Apparently our bodies develop antibodies to these tnf meds which over time makes them ineffective. That's not good but just one of the many more things we have to deal with ra. And you rant and rave away! Heck isn't that what blogging and sharing is all about :-)

Jan said...

Being new to this RA diagnosis, it is hard to read that meds will become ineffective--esp. as I am waiting for the methotextrate to work!! Good luck with this new med. I appreciated finding the link to you at RA Guy's blog.

Cathy said...

Good luck with this new medication and please do share your progress as we will all be cheering you on.