Being home, Zander's here, Happy Easter!

Ive been home since Tuesday and has been nice; ive been able to go to Maundy Thurs and Good Fri
services for Lent which has been especially nice. Using measurement as a gauge of how I feel headache and associated symptom wise I feel mm's better in an inches world so that's something compared to nothing! I havent been sleeping well and so when I do finally fall asleep very early in the morning I end up sleeping till 10-11 or so in the morning and the one day didnt have anything going on and didnt have an alarm set + didnt end up waking till I think it was around 1 in the afternoon (after falling asleep around 6am) which was a little crazy! Ive also been feeling really short of breah (not as in "I just ran a distance or was in a hurry short of breath" but "I cant get enough air and feels a bit like I am suffocating" a quite crappy feeling and much like I felt like before I started the bisoprolol and before we switched to that when I was on the calcium channel blocker-diltiazem and lasix (still on this). Unsure what this is about as it has been really improved since last summer. Yuck!  I also seem to have picked up a bit of a cold the past few days mainly just a stuffy nose which in turns causes a small bit of a sore throat but no fun, no less! Hopefully will be on it's way in a day or two.

Zander is spending the night tonight and sleeping in the other room (I sleep better typically on the couch so he is asleep in my bed), we dyed easter eggs (using kool aid, turned out pretty nice) earlier for at my parents tomorrow and otherwise just where looking up and watching various bridge videos on youtube and the internet + drawing as well as reading after supper and his bath. Zan loves cruising the internet and is actually very good at it so typically he will have my netbook and I have my laptop + we'll be side by side looking up videos together. Kind of fun to see what we find! I also had picked up a few bug/insect and train videos from the library the other day (his true loves) and we had those going in the background. I am actually all for quiet when it is just me so there is definitely not much of that when he is here but thats ok to! :)


This week has been pretty ok, tiring but ok as it's been nice to atleast feel a little better. My guess is to those around me (family for instance) its hard to see any difference as ive had lots of comments how quiet I am when my Mom, sister and I went out for sister w my niece the other night and when we where together for something else today but I do feel like it's a little easier to get up in the morning and though the breathing is definitely making me a little crazy it's nice to have a little break from the severe headaches - hopefully this will last! I am hoping if we where to move the codman (VP shunt) valve down a setting when I fup w Dr.Bragg in 1 1/2 wks that maybe that will improve symptoms even a little more. That would be a AWESOME result especially since I leave for Boston 2 days later!

Ive cont'd to have the Zofran delivered each week by the home health company but dropped from using it typically 4 times a day ((and some oral med!) to typically just 1 or maybe some days 2 times a day and a few days have supplemented w oral zofran to). SO NICE! :)
Zofran

Thanks for stopping by, -

Erica
ps the shirts and stickers I had made for the Genzyme-Boston Marathon (rare disease team) turned out really nice and a bonus the shirts are 100% cotton! The shirts from Genzyme are a silky material so more clingy but also pretty comfy. Nice! :)

pps I am back to teaching sunday school next sun (no class on Easter) and my co-teacher is taking the sun I am in Boston) - I am looking fwd to seeing my kids again as its been 3 weeks now, my how time flies! :)