For those of you that are new to IWWB, Pass the Mic is a way to give other spoonie warriors a platform to share their chronic illness journeys with each other. Sharing helps us feel a little less alone in our battles. Wanna be featured? All you have to do click here.
This month’s PTM warrior is Alexis. She has a rare cardiac and pulmonary condition and she’s about to tell us all about her journey.
SO WHAT’S YOUR NAME AND WHERE ARE YOU FROM?
Alexis A from Southern California
HOW OLD WERE YOU WHEN YOU WERE DIAGNOSED? WHAT EVENTS LED UP TO THE DIAGNOSIS?
I was kinda diagnosed around 27ish, didn’t receive an official diagnosis until this year at 30. It’s been 12 years of severe symptoms, ER visits, hospital admissions, doctor appointments- the works.
WHAT HAS YOUR TREATMENT PLAN BEEN? WHICH MEDICATIONS HAVE YOU HAD THE MOST SUCCESS WITH?
Unfortunately, my conditions can’t be managed with medication so I’m on a management plan. Avoiding things that trigger flares and indulging in things that help keep me well.
BESIDES THE SYMPTOMS, WHAT’S THE MOST DIFFICULT PART OF HAVING A CHRONIC ILLNESS FOR YOU?
The diminished mental capacity. My short-term memory has been severely impacted, I’ve lost a lot of memories; my attention span is nearly destroyed, I’ve developed moderate executive dysfunction… it’s just a lot.
WHAT’S THE BIGGEST IMPACT your illness HAS HAD ON YOUR LIFE? HAVE YOU HAD TO MAKE ANY CHANGES TO YOUR EVERYDAY LIFE?
The biggest impact my illness has had on my life has to be the energy loss fatigue and malaise. I literally only have a few hours of working energy before I’m exhausted and can’t do any more for the day. It’s resulted in my extending more grace to myself, utilizing help, and doing whatever it takes it make my life easy overall.
BESIDES PHYSICALLY WHAT OTHER EFFECTS HAS chronic illness HAD ON YOU (MENTALLY, EMOTIONALLY, SPIRITUALLY, FINANCIALLY, ETC)? HOW HAVE YOU WORKED THROUGH THESE ISSUES?
I find that I sometimes struggle with a spirit of envy towards people who are healthy. I look at them and I’m like “I want that”. Which sends me into a vicious cycle of anger and depression. It’s something I’m consciously and intently working on it.
WHO OR WHAT HAS HELPED YOU THE MOST IN COPING WITH YOUR DIAGNOSIS?
Therapy has helped the most with coping. It’s helping me build my toolbox of coping skills that I rely on heavily to keep myself stable.
WHAT GOALS HAVE YOU BEEN ABLE TO ACCOMPLISH IN SPITE OF YOUR chronic illness DIAGNOSIS? WHAT’S NEXT FOR YOU?
I have been able to accomplish all of the goals I set: starting a business, configuring my life so it’s easiest for me, etc. The plot twist is the way I’m able to accomplish them and the length of time it takes.
THINK BACK TO YOUR DIAGNOSIS DAY. WHAT ADVICE WOULD YOU GIVE TO YOURSELF OR SOMEONE NEWLY DIAGNOSED ?
Two things: 1. Give yourself grace. 2. You’re allowed to not know.
Any other comments or words of wisdom you want to share?
Accept and adjust when needed.
If you’d like to connect more with Alexis and support her amazing business, you can find her on IG : @hourxhourbath .