What is going on in my body now is a first for my. I feel like I'm wearing a metal girdle around my back and swing two poles of concrete when I move my legs. I can stand for 10-15 minutes, then have to sit to stop the back pain. After a short rest I get up and do it again. Looking one foot ahead seems like a mile.
My appointment with physio yesterday was the first opportunity I've had to get involved in a positive action. I'll have two appointments per week for at least five weeks to learn how to 'manage' the lymphoedma. When I saw the cardiologist last week he was concerned about the lack of ciruculation, the blood and oxygen is not getting back up to my heart and pooling with some veins rupturing through the skin. I don't have those surface varicose veins that you can see, but the vein will come to the surface and with my skin so thin, just rupture. He is talking stints but will not proceed with anything while I'm on 20 mg of pred. He is going to do a vein mapping procedure, ultrasound, on the 16th. Right now...I don't see me adding anything else to this mix until I get a bit lower on the prednisone.
I listen to the pioneers and veterans on this blessed site...and see what they have endured which is so empowering. Tough!!! Strength is in the knowledge and knowing there is light at the end of the tunnel. Maybe not a 'light' we would have selected for ourselves, but management and acceptance....and forward.
I was looking at pmrgca.org.uk/about-us/what... and read under the ABOUT US tab!! What a mission statement...educating professionals and giving all of us a 'home'! I cannot imagine day to day living without this site. My heartfelt thanks💖💖💖
(Grammarly is not working?, hope there aren't too many misspellings.)
Symptoms of Vasculitis?
Got down to 3.5mgs Prednisolone after 3.5years
Biopsy coming up
Tiny Purple Veins in Feet and Legs - Swelling
