Still having fatigue issues (living with 7 hour days at best) and needing too many trips to the ER for pain meds to be able to use what little time I do have living. I was so happy to make it out sliding with Emeraude yesterday (thanks to supper @ Mom’s that I didn’t need [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]
I’ve fallen ridiculously behind on my blogging. My days seem to blend in to each other as it has been necessary for at least a month now that I go to the hospital every day (sometimes even two or three times in a day) for injections for pain meds. I am incredibly fatigued and feel [Read more]
Monday the Family Place’s Gross Motor Skills Program started at the Rec Centre. I have to say that Emeraude did enjoy herself,very much. I was so impressed with her when at the beginning of the class she suggested follow the leader and then asked to be the leader and did a great job [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]
I was in pretty bad shape this morning but really wanted Emeraude to have some fun in spite of this… I went to the hospital as early as I could stand on my wobbly legs for an injection of pain meds and then the cab was picking us up to go to the family place [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]
"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]
"...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]
"...Mom & Dad arrived after we had been skating for only about 5 minutes and Emeraude was quick to start showing her skills. As we skated she would lift one leg (knee bent, foot out behind her) gliding with it in the air. She is not yet confident enough to try ..." [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]
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]
