Monday, December 30, 2019

Oct 7 2019

So apparently in NC home health agencies that are usually run by a specialty pharmacy, do not carry the supplies needed for someone like me, I guess because I'm special & rare 😉 as of now & the foreseeable future, I'm not expecting to be doing any more of my infusions. Every place has said what I require is not in their formulary. Some have been polite; others not so much & have been reported 🙄. I will have to go at least once more to get a heparin flush so I don't develop a clot. In my mind the only option left is finding a way to do this on my own & find a supplier or multiple suppliers to send what I need. But that is thinking ahead. I'm just going to ride it out & take it one day @ a time. 
These infusion were significantly helpful. I wasn't having as many dizzy spells & my torturous colon & mast cell were not causing my stomach as much of a problem.  
I haven't received fluids since last mon; so the reality is that it just might not happen. 
I will update if my advocate finally gets somewhere

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March 11 2020

So update  I'm still trying to be careful about what I say; because things could easily change at any moment. About a week or 2 ago, I c...