Living with MS March.16.09
Well, the 5 day predinose attempt is done (it finished Sunday);
Dr.Crawford wanted me to take 50mg of oral prednisone daily as he though
She wasn't really sleeping, one of her favourite things is to pretend they are when I come home.
t this would improve my symptoms (I am as I write, feeling a little concerned that perhaps he too is falling into the idea of focussing on pain as my worst symptom when in fact fatigue most negatively affects my quality of life). Although this had been tried in the past, and like mentioned, it would not address my fatigue issues, I opted to go ahead and take them. The negative side affects (at least short term) are negligable and refusing to try might be taken the wrong way, like I wasn’t willing to try anything to get better. Of course I did not really do the math that this would bring me to the March Break, with no time left to try the 5 day IV solumedrol that I think might actually have some results (if it’s been long enough since the treatment that failed in the beginning of January something no one has any way of knowing – including me – until we try) before the Doodleebops concert on Friday which I very much wanted to attend with Emeraude (I’m crying now facing the reality that I will not be bringing her…very difficult to accept without feeling completely disheartened, there are many things I can and have learned to accept as my norm or work around live through… The occasional treat for one of my kids to do something together that is really important to them – well – I don’t know how to not wish/hope for those opportunities) and Dr. Crawford had not mentioned either, that he would now be gone, leaving me with no options whatsoever as no other doctor, neither the locum nor Dr.MacTavish, will be willing to try any treatment while he is gone (especially since they will see his absence as short or no big deal for me to wait but meanwhile, this concert will not be there when he comes back, March Break will not wait for me to get better and I am missing opportunitites with my children that I cannot get back).
I got the blood test he asked for today (watching my ESR) still trying my best to go along with his efforts as I believe they are sincerely well meant (something that I could not say about my last doctor). I am still (this would be well into month three) going to the hospital 3-5 times a day (every 4 hours) for Dilaudid injections for the pain that I cannot function through. The fentanyl patch that I began 9 days ago (after trying another type 1st that did nothing) is of course not working and I can finally stop sticking the stupid things on for nothing (Dr.Crawford had asked that I give it a whole 9 days – they should work within hours – to be sure they didn’t help). Of course I had used the patches for pain between steroid treatments in the past (this is a very different sort of pain that seems to be manageable with both the patches and oral meds… It is VERY different from the unbearable indescribable pain I have these days which used to be short lived when I had the IV steroids as an option that kept me ‘well’ for 2-3 weeks out of every month I received them… I have been dealing with this more severe pain for what is going on 3 full months (sorry about any repitition in this post but I wrote it going back in forth in paragraphs) since my steroid treatment was unsucessful Jan 1 -4.
Wishing everyone a great March Break… feeling a little sorry for myself that I am not contributing to my kids’ march break being the most fun and special it can be I will stop that soon, I know I am very blessed and so lucky that my children are so awesome and HEALTHY… Prayers welcome and appreciated.
Who wouldn't love coming home to this... I am lucky!
