For a while I sincerely felt like this day would never come - I think this was definetly one of the worst medications but in a subtle way ive been on in a long, looonngg time. 5 weels ago I found out about the CNS infection and started the Zyvox - thankfully I am now finished with it as of last night-my last dose! This med has brought on such incredible fatigue in a way I cant even describe (not unlike that caused by beta blockers but different at the same time). When I had asked the Infectious disease docs about it the NP had said this was surprisingly a very common noted side effect in their patients on it although it isnt listed as a side effect in the literature. Atleast I knew I wasnt crazy!
Yesterday and today have been surprisingly tiring (in a different way I guess if thats at all possibl!) not only do I feel tired but I feel completely exhausted which is odd as the past 3 weeks (or is it 2 weeks only?) since surgery energy wise have been fairly decent other than the zyvox effect. I think the continuing annoying pinching/searing very present but intermitten feeling along the proximal portion of my shunt isnt helping I actually wonder if this isnt draining alot of energy as the past 2 days have definitetly been a little harder and a lot more often and occuring for longer periods of time. Ive also had a few symptoms re-occur but just beginning last night and today so maybe thats just a fluke and will again improve. - it sure would be damned nice if it did!!! Because of the vision issues ive taken to wearing my glasses for reading anything although the glasses annoy the h-e-double hockey sticks out of me because I despise the way they feel. I just cant make myself wear them all the time for this very reason.
Audiology testing yesterday was stable w/the mild hearing loss at sensorineural level (highest frequency equated with difficulty typicaly hearing in loud environments or differentiating conversation when more than 1 person is taliking in a crowded room. For me it just has been sensitivity to a lot of noises (air compressor, elevator doors sliding shut when they are slow closing, etc and being in crowded rooms. Not to big of a deal. The noise thing may even be more of a sensory thing but I guess that could go with hearing, who really knows, or atleast I dont off hand!
We're making slow - really slow progress on our collaborative effort (genzyme and myself) for the identifying un-met needs in adults with MPS I project which has been nice and although I think this is going to take us months still we have some really good ideas and a good group involved in this effort.
This is about all I know - not the most enlightening or entertaining update (are any of them really!?) I know.
Warm wishes for a Merry Christmas and Happy Holidays!
Erica
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