A Relapsing Polychondritis interview .

Vana74's interview


How did all start?

I thought I was having a PsA flare up but it, felt different. My ears and nose were screaming as well as every bit of cartilage in my body. It was even in my pelvic region, and I couldn't sit or lie down with any comfort. Then the breathing issues started.

Do you already have a diagnosis? How long did it take you to get it?

Yes, it was confirmed on the 16th of Nov 2022. 8 months after the initial flare. It would have been sooner but unfortunately, I was seen during the flare by my Rheumatologist's P.A. and when I suggested it to her, I got, "could be, maybe, I don't know. So, she put me on Prednisone and because she wasn't understanding that the pain was different, tried to change my biologic. I had a bladder infection and had been off the Taltz for a month. I refused the change in biologic because I wanted to see if the Taltz made any difference, it took the headache away that the pain in my nose and ears was causing. I no longer see any P. A's. Just my rheumy every 4 months and my ENT every 3 months. It sucked that I had to diagnose myself but feel I am getting the care I need, for now.

For what medical specialties have you been treated? What has been the most useful specialty for your?

Taltz and Prednisone are the only two that I have noticed any relief from.

What has been the most useful thing for you so far?

Having it acknowledged was a major relief and quite scary at the same time. I have wonderful husband that is kind, patient and very loving. Even though he does not understand the disease.

What have been your biggest difficulties?

Sleep, it is so much worse at night. Pain is a constant reminder and trying to explain this to my family.

How has your social and family environment reacted? Have your social or family relationships changed?

Covid changed all our relationships. Because we asked them to wear masks due to all of my illnesses and my husbands, he has industrial COPD/Emphysema from his 38 yr military career, they refused and now don't speak to us. This is also some of our children doing this. I've no energy for bullshit or drama so my circle has gotten very small and sometimes excruciatingly lonely.

What things have you stopped doing?

I no longer rush to get things done. I was a person, that when started a task, had to finish it, regardless of what it was doing to my body. I love to garden. A year ago, last spring I had to have my second neck surgery and oh boy was it a doozey. But I had to plant flowers, so I did, with my neck brace on. The song by Alabama, "I'm in a hurry to get things done", was my motto song because I was always rushing around, quite like the "Mad Hatter". I have several unfinished projects that we are now hiring out as I cannot finish them.

What do you think about the future?

I don't at the moment. I'm just getting by a day at a time. There are several things I need to get done in preparation for what might come, and I am working on them, one at a time, as to keep the anxiety down.

So far, which years have been the best years in your life? What have you done during them?

The last 8 yrs. We started traveling a bit. My husband retired so no more stress and dealing with the military. We moved out to the woods where we are both meant to be. I love to commune with nature and see all of the wonders of it. We are truly blessed, and I am very thankful for all of it.

What would you like to do if you didn’t have your condition?

I would utilize my craft room more. It takes energy to go in there and be creative. I've lost a lot of that.

If you had to describe your life in a sentence, what would it be?

Peace, love, gratitude, thankfulness and acceptance are the lovely things that surround me.

Finally, what advice would you give to a person in a similar situation?

Be your own advocate. Don't let Dr's and such dictate to you what you want or need. Remember, they work for you, utilize that. Give yourself a break every now and then. Being sick, with any disease is draining and hard on the psyche, allow yourself some rest, comfort and self-love. Remove any drama or stress from your life, even if it's family members. You can love them from afar, it's difficult but doable.


Nov 20, 2022

By: Vana74

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