Honestly I don't even know what I've all not updated on as it's been almost 2mo since I've updated here but I just could never quite get myself to sit down and type out an update.
I'll try to keep this short and just the basics..
I guess the main things are the shunt stuff is still going on, we know now the 1 shunt (LP Shunt) likely isn't working like it should from a shunt tap that was done some wks ago so that likely explains my headaches and every increasing symptoms (which have been kind of aweful). - My Nrsgn doesn't want to fix this though till he gets some device he's been trying to get approved past the FDA or Pharma approval and that's been moonnnttthhhssss + even after he would get approved it then would be 6mo more of it being implanted apparently that he would be collecting intracranial pressures remotely BEFORE he'd consider revising my shunt or doing something else. All I can say is what the frick?!?!? It has been so frustrating. -
I don't remember if I updated about that or not but I saw the UofMn Nrsgn a few months ago and he had given a few suggestions for things he thought might help the situation but those of course where discounted and never considered. I still can't quite figure out why my Nrsgn wanted other drs opinons if he never actually was going to consider what they thought? I wish this where an easier answer and weren't so hard to find a different dr. - It's not even that my Nrsgn is a bad Nrsgn, clearly he's good at what he does but for my case he is adamant against learning about my underlying disorder and actually helping. =/
Otherwise just the day to day - holidays are creeping up or I guess really are in full swing since Halloween is over and thanksgiving in a few wks. I can't quite get in to the swing yet but have been planning for Sunday School for our Christmas activities and that part I really love as well as when Z (my nephew) comes next since he LOVES Christmas trees will let him put mine up and decorate some. I honestly could do without the extra clutter but it is kinda pretty when it's all said and done decorating. =D)
The humira study I was in finished up a few months ago and I have stayed on that drug, every other wk (usual dosing for humira). We have the Lasix heart med at a stable dose now and that seems relatively ok along w/the other heart meds.
I go back for the x3 mo botox injections later this wk which helps muscle over activity (dystonia/spasticity) and although I could do without the actual injections I am looking fwd the help those give! I'll start PT again in the new year and between not doing that and we had tried a lower dose of botox this last time my back muscles have been less than great. I actually look fwd to those injections which is CrAzY!
Will try to update sometime sooner this next time although really it's just been a lot of mundane, same ole same and mostly trying to not lose my mind (kind of kidding but at same time is frustrating) with the shunt stuff.
Thanks for stopping by,
Erica
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