Last year I was part of a coalition of people with digestive diseases meeting with Legislators at the Hart Senate Building in Washington, DC. I anticipated and prepared to do the same this year. My presentation included not only showing an Ostomy pouch to the Aides (since rarely do the Senators have the time to meet with us) but comparing the necessity for the pouch to a pipe in one’s kitchen. The salient point being everything works well as long as the pouch (and its concomitant appliance) is there, in essence, like the drain pipe. With the cuts in Medicare constantly at issue, will Ostomates have the continued access to supplies? That is the concern of so many of us.
I am not at the Conference this year, and for that, I feel very badly. The Coronavirus has been playing with my head, and in truth, my compromised immune system has held me back. The two days are exhilarating and exhausting with train travel and all-day meetings. It is not because I fear Washington is a hot bed of the disease, that I have canceled this year, but that I cannot afford to wear myself out, which will make me more vulnerable to all of the Corona, as well as all of the respiratory viruses we fight each and every day. I am washing my hands, eating my fruits and vegetables and resting when necessary. Although I am not a sick woman, I am a woman who can get very sick. In addition to my bowel issues, I have a bronchial disease known as Bronchiectasis, and that has made breathing extremely difficult as a response to less frightening illnesses.
The weather is clear and chilly in New Jersey, and I am assuming Washington is similar, only a few degrees warmer. Getting around Capitol Hill will be exciting; being where our Legislators are hopefully deciding what needs to be done to protect all of us will be empowering; having the voices of those attending the DIGESTIVE DISEASES NATIONAL CONFERENCE speak for all of us and bring the issues we face to those able to help, will be incredibly impactful…and I wish them all of the success possible!
As always you are such an inspiring, amazing lady. With the likes of you trying to get the right people to understand all the barriers you face daily I’m sure a tremendous impact will be felt by those on Capital Hill.