Hi Godsgal ,
I use a wheelchair in public as well , indoors on bad days as well . It is my enabler . Enabling me to use my energy and do anything on rough days .
I am a wobbly legged anaphylactic ;-( but I use what I need to .
I found it very hard in the beginning , now I am just me , with a different mode of transport .
Its one part of my management of my condition to allow me some life . That includes medicines and trigger management
I can completely see and feel your frustration . I can see triggers in your writing .
Regards your cardiologist , there is info on the mastocyctosis society web page regards suitable drugs and alternatives , which Ramona has mentioned .
How does the beta blocker help you ? If its heart rate , it going fast , then a good antihistamine regiemn will help that . The drugs ramona mentioned will also help . If its anxiety because of the fast rythym , I completely understand . many of us here use a relaxer , to help that . Anxiety and stress , physical and emotional are triggers for many of us .if its purely the cardio doesn't listen we can get some info together for you to give them
I don't think you are regressing
I think you are having stress and other triggers without the antihistamines . i find having so many meds hard at times . I want to be back how I was . Then occasionally I run out due to my ordering system being slow . When this happens even missing one dose has my symptoms shouting again , leading to me being strapped to the loo with a bucket .Sorry , not a pretty picture . All i am saying is I quickly know I need everything for their own reasons .
I now have a handbag and a pill / potions bag . I am happy I am doing better , but have moments where I would love to just go out and have an adventure without having to plan it like a miliatry procedure . Wheelchair , pills , epi pens , hand bag , hospital bag ( if going more than a mile ) safe food and drinks . OH and me
I have spent nights in hospital with nothing to change into , nothing to wash in and gone home commando too many times to leave anything behind . I was never high maintence , boy , i am now
Just to say , I know . I wanted to share my experience . I am not saying you are thinking this way . I just wanted to tell you how I ahve found things
If you can try ranitidine , it may help as pepcid is like baby food to us ( a saying stolen from Deb our forum lead
many hugs
Josie