i fell through the window and i found out i was still breathing

by kaleidegirl

so i’m taking a sort of ‘sick day’. my breathing has declined since Friday but we think we know the cause but not the cause of the cause. does that make sense? i’m taking a med that is helping and will hopefully continue to help and get me be back where i was and improving even more.
i found the scooter/moped i want so i need to get back down to smaller tanks or preferably the POC (oxygen purse, portable o2 concentrater) laugh if you will, i probs deserve it but i just can’t handle a real bike. i’m going to be sure i can ride my bicycle very well before i actually buy a scooter and i’ve been working towards that since the start of spring, right about when i started to tank the first time.
so its a sick day for me.
i’ve set myself up on the couch with the basic things i might need and i will get my activity in by cleaning something randomly throughout the day. just little cleaning tasks like wiping down a table or dusting a room with the swiffery thing.
i may attempt getting out the ‘slow karate’ (Tai Chi) DVD that Chris got me but i gotta see how i’m breathing. no matter what i do i need to be active in some way or i will really be having a sick day. not being active makes me feel 10X worse. 
oh! despite this setback my chest xray that was done yesterday at the ER showed good news.”lungs are better expanded than previous” and the dr said my lungs sound clear. it is rare that tests show improvement. usually its no change or something is worse so this is very good news.
i’m also working on taking my synth dreads out because my hair needs a rest, its growing out too much and is starting to dread and lock up for real, i need to do a good thorough dye job to take care of new growth and places i’ve missed and i am hoping that by the time i am getting them installed again the right side that i shaved in April will be grown out enough that i can have a full head of dreads. a far better way to handle the awkward stage, for me anyway. i’m having some trouble so if you want to come visit and help a girl out, that would be awesome.
 
oh. the process to get on the transplant list is finally really getting going now. i’ve already gotten quite a few tests out of the way and will soon be meeting with the surgeon. there is a 90 minute education class then i actually talk to the surgeon and i guess they are key to deciding my fate so to speak. i’ll know more today i hope when i finally talk to the coordinator.
 
all apologies to my awesome family that was here visiting. i know i was a bit of a buzzkill and really appreciate everyone being so understanding. not to mention taking me to the ER which, as it turns out, may be what keeps me out of the hospital for this issue i keep having.
 
question.
anyone ever have a sudden issue with certain foods where they are spicy even though they shouldn’t be and never were before? like ketchup and other processed tomato based foods seem to suddenly be too spicy and i’m becoming hesitant to eat certain things. i seem fine with fresh tomatoes except for salsa, that seems to just be spicier than usual for me and i was already a wimp. i feel like it has to be a side effect of one of my meds but we just can’t make sense of it.
 

this started as a FB post but i guess i had too much to ramble about.

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