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]
"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]
"...a dilaudid injection (I had had a standing order that included toredol but when it was brought to my doctor's attention that I had been receiving it for more than 5 days he..." [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, I’ve finally taken the leap. I’ve been meaning to get a blog up and running for some time now and feel genuine relief and finally having it underway. I hope to share with you some of the challenges our family faces as we go travel through life together. I believe that in [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]
"...Tried to get some info regarding my possible chemo treatments that I had discussed with my neurologist in February but not having much luck, mostly just being given the run around and left messages regarding mri's, emg's and muscle biopsies ..." [Read more]
Ok, so it’s Sunday (our day to start the trip) Mar.25th… It was a really rough night last night, Emeraude was up with that darned croup for about 2.5 hours!! I’m EXHAUSTED!!! It is now 11:06am and I’m still working on getting the laundry done, here in my pj’s [Read more]
well, well, well… going on day 4 or 5 of feeling pretty darned good! (not normal mind you but still, encouraging!) The volunteer conference was great, very interesting, the Rendez Vous did a great job with supper and Saturday night was pretty fun (even got to stay out late! called Daniel from [Read more]
these are notes I'm transefering from my facebook files to give some history... the following are comments that were posted to this note at the time (I feel these are important to transfer along with my original notes as the comments and well wishes form friends have often been what takes me [Read more]
Well, for those of you whom I should be in touch with please bear with me… I’m REALLY REALLY not doing well the last couple days. Dealing with fatigue like I haven’t experienced since i ws in the hospital last summer. Not sure what I’m going to do. Lloyd & Emeraude [Read more]
