update

God works in mysterious ways that don't make any sense to us. I got a call from home health and they presented me with 3 choices:


1. go to the ER and demand that they hook me up with a doctor that will sign for my infusions--so not a fan of that one and I doubt they would know who to send me to since everybody else didn't


2. call the infusion company and try to get one of their doctors to do it---did that and no go awhile ago


3. They provided me with the name of the doctor who signs off on saline infusion therapy for their other POTS patients.


I jumped at the possibility of #3 settling it all. I called just to be told he wasn't taking new patients but they have residents in the practice that can consult with him when needed. I have an appointment to see one of those on the 22nd so you can be praying that works out.


I then called my home health department and left a voicemail stating I had this appointment scheduled and I never heard back so for now it would appear that they will continue services until that point. I could be totally wrong though so I am not assuming I am in the clear quite yet. I could also encounter a bunch of insurance issues that could be a roadblock as well. Literally, God only knows.


I did finally get into see an immunologist today and this doctor is fantastic. After explaining my skin issues and what led to them he was so confused and said he didn't think he could help me because it's not plausible to test for every part that goes into various adhesives. I explained how my face turn red and he said this is very interesting and because I am only "allergic" on my upper chest but nowhere else he walked over and scratched his pen on my skin and almost instantly a welt began to form. He made me stop talking so he could think and then said he really thinks the cells that compose that are a group of mast cells.


This would make sense then that it's not a contact allergy because that would not be isolated to one spot so the reaction I have is from damage or irritation to the skin itself not an allergen. Everything began to add up because I first developed this issue during a port surgery which is major damage to the skin obviously and every time my port needle is changed I have issues as well. The tegaderm was the suspect because it reacted but what really is going on is it kind of tugs on my skin damaging it and when I take it off it is even more damaging to the skin.


He said he knows nothing about Dysautonomia so he is going to do a lot of research on my situation but he is determined to figure this out because it is a challenge and apparently he likes those. He hooked me up with a dermatologist to get my skin biopsied and tested for mast cell congregation and we will go from there but all of the symptoms add up. I have this appointment on THURSDAY at 3:30 and I ask for your prayers because I am a tad nervous about it.


"Let every heartbreak and every scar be a picture that reminds you who has carried you this far Cause love sees farther than you ever could and In this moment heaven's working everything for your good"-DG