In January I joined the Steering Committee for the Creating Patient Access Task Force and last month we announced our 2 year plan. Our first event is coming up at the end of March. March 31st to be exact. The Awareness Task committee is hosting a chat at 8pm ET. We wll use the hashtags #CPATFchat and #MarchIntoAccess. I hope that you join us!
Barby Ingle rep’ing for Rare Disease Week 2020
Also, at the end of Feb. Ken went on a trip to Germany. (He brought me back a candy bar). He developed strep throat shortly after returning, and I promptly also developed it. He got over it pretty quick. I am still dealing with it. Along with the Valley Fever.
Society is dealing with the Corona Virus with the number 1 tool being social isolation. Which I have done for many years now. Yet, still seem to get sick more often than anyone else I know, mostly because I have a poor immune system. People who are having to socially isolate now who have never done it before can have a tough time with it. I know I did in the beginning. We also are told to wash our hands for 20 seconds. I know that there is a a lot of people who are my friends around the world who are highly susceptible to this virus. I am hoping that we all will stay safe and get through this hard time with no loss.
My best advice 4 those who are NOT immunocompromised is 1) Respect those in your life who are, distancing 2) Take this time to help those who need it while not bringing germs n2 their life (leave packages at their door) 3) Be creative, Learn new ways.
My top advice for fellow #HighRiskCovid19 patients, 1) know the facts, 2) stay isolated (I haven’t been able to kiss Ken since Feb 28th) dont be guilt into being social 3) Drink lots of fluids/water 4) create a routine/goals and work towards them.
I just sent the Spring issue of iPain Living Mag to the press & am working on the Summer edition. (Accepting submissions through the end of April, 2020). I am working on resting and breathing. Once I can breathe proper, I will exercise this (steroid-induced) weight gain off w daily walks.