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 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 [Read more]
Appointment with Dr. Crawford today went very well although I did again forget a few important things I had hoped to speak with him about and it does not seem that we have the follow up appointment that we were supposed to start doing a week after any regular appointments for that reason. So that [Read more]
It has become pretty clear that any hope of treatment options before Dr.Crawford’s return is not realistic. I have decided to lower my expectations for what I am capable of doing around the house & with the kids and therefore, reduce the need for pain meds. Yesterday I chose not to go [Read more]
Symptoms are really interfering with my ability to have any quality of life. 8am 50mg oral prednisone 120mg ratio-morphine Lloyd had to be at school early for a basketball game and at 8am was just putting Emeraude next to me in bed to say goodmorning. I struggled to balance on my legs as there [Read more]
day 3 steroid treatment did not go so well… the treatment was okay, the results PLtheRhhh (that’s a raspberry & thumbs down). my face really is as red as it appears on the photo :S (that’s the steroids). Emeraude was sweet enough to come keep me company as I received my [Read more]
"my IV Shunt had been put in without any gloves port-a-cath (which I have under my left side, kind of below my collar bone) being worn and I was a little concerned with the possibility of yet another skin infection (I dealt with many of these before finally having my 'picc line' and then about a [Read more]
I began my treatment this morning… tonight will go smoothly having had the solumedrol early in the day. I ate a few packs of crackers during the treatment (which was over the course of about an hour) and they seemed to settle my stomach. I was thrilled when, near the end of my treatment, I [Read more]
"...not been dealing with a significant amount of fatigue, mostly just pain and so am weary of getting my steroids as of yet (the potential risks of these long term are quite serious and so I have tried to always put them off for as long as possible)..." [Read more]
"Well, treatment night #2... There is a new nurse at the hospital who gave me my injection this afternoon. Really interesting french lady who usually works at Muscle White. She was the one who signed me in tonight and even though she's really nice I was feeling just a little sad having thought that [Read more]
Following are comments posted to the original note in facebook, I feel it is important to include these as the comments/prayers from supportive friends are what gets me through times like these: Brandi Johnson-Hall at 10:56pm May 7 OMG!!! Im so sorry for u .. but then again releaved.. I know [Read more]
