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 the strong and vivacious Whitney. Let’s see how her chronic illness journey with Fibrosing Mediastinitis has been.
So what’s your name, age and where are you from?
Whitney W., 34, New Orleans, LA
How old were you when you were diagnosed with Fibrosing Mediastinitis? What events led up to the diagnosis?
I was 28 years old when I was diagnosed. I had been working out and losing weight but I suddenly was having issues breathing when I was walking up the stairs. And I also started coughing blood.
So I went to a pulmonologist who dismissed me because of my weight but I pushed back because I had lost a lot. He would not, however, get around to schedule my followup after my test showed issues. During that time, I ended up in the hospital and had to have my gallstone out.
After that surgery I went hypoxic and had to be intubated for a week plus. That started the 6 months of testing and doctors from around the country were weighing in on what my issue was. It was determined I had Fibrosing
What has your treatment plan been? Which medications have you had the most success with?
The immediate treatment plan for me was high dose steroids. I’m on oxygen because I have circulation that is cut off that would need to be surgically corrected but it’s currently not worth the after affect/impossible.
Are you in remission? If so how long?
I’m currently off the steroids and “stable” whatever that is. There are only a few hundred people with my diagnosis so there’s no treatment plan.
Besides the symptoms, what’s the most difficult part of having a chronic illness for you?
The most difficult part of having Fibrosing Mediastinitis is not knowing what’s coming. There’s not plan or expectation. It affects the few people who have it differently.
Nothing to expect. It’s also annoying that steroids is the only thing that helps because I have all the bad reactions to them.
What’s the biggest impact Fibrosing Mediastinitis has had on your life? Have you had to make any changes to your everyday life?
The biggest change for me has been the use of oxygen and adjusting to not being able to do things the same because of that or because I’m tired.
Who or what has helped you the most in coping with your diagnosis?
My friends and my niece. My friends are so supportive and caring. Even when they don’t understand, they’re there. And I even know who to go to with what.
My niece makes me feel like I have to and will do anything in my power to be here and be well for her. She’s my life.
Besides physically what other effects has Fibrosing Mediastinitis had on you (mentally, emotionally, spiritually, financially, etc)? How have your worked through these issues?
Mentally and emotionally, things were rough at first. I’ve worked through those by reassessing my goals in life and reworking them for the life that I will have moving forward.
I mourned the life I thought I was going to have and am preparing in celebration of the life I have and will have. I’m also in therapy but I don’t really talk much about my illness.
Overall, emotional wellbeing that I get from therapy helps me deal with the emotions that come up from being ill. I think this is a space that I’ve done a pretty good job navigating and I want to help others navigate it as well.
What goals have you been able to accomplish in spite of your Fibrosing Mediastinitis? What’s next for you?
I’ve gotten a grad certificate, changed jobs, moved across the country, started a business, and gotten into a doctoral program. Fibrosing Mediastinitis ain’t got nothing on me.
Think back to your diagnosis day. What advice would you give to yourself or someone newly diagnosed ?
Take your time. Ask questions. Be sure about the course you are taking. Try to have someone with you if you can.
Any other comments or words of wisdom you want to share?
Acceptance is the first step to living your best life despite your illness. When we except something, it doesn’t mean that we want it or like it but we acknowledge it’s a thing.
When we make that acknowledgement we can be free to move around it, with it, or thru it.
Whitney and I went live and dug a little deeper into her story and journey with. Did you miss Whitney’s Live Interview? No worries! Check out the replay.