Biography

hi there everyone, this is my first post, I love this group!

Diagnosed with IPF in Oct 2018, I’m coming up on my 5 year anniversary of diagnosis. It’s been tough. The doctor did discover I have several autoimmune diseases, Sjögrens being the one causing the IPF to gain traction.

I’m the first in family to have it and there is no ecological(?) reason for me to have it. I’m not sure if that’s the right word I want use… what I mean is, I’ve never smoked, or been around someone who smoked long term, or inhaled fumes from paints, blah blah blah…

My point is, this is just another diagnosis in a long line of other diagnoses I’ve received since 2010. And the crazy thing is, many of them, seemingly, have nothing to do with each other.

Upon diagnosis, I was placed on Plaquenel. One of the best meds for Sjögrens with IPF, I’m told. Last year, my doctor told me lungs needed some assistance and there was this good line of meds called immunosuppressants. The good thing about them is they slow the progression of the Sjögrens.

“Well that sounds good,” I said.

“Yes, that is the good part. The challenging part of it is that your immune system is even more susceptible to getting any cold, flu, coronavirus, etc.”

This was in the middle of the coronavirus crisis. My Rheumatologist gave me the websites and information pertaining to immunosuppressants in general and also the immunosuppressant in particular she and my pulmonologist thought was right. She asked me to go home and read, talk to my family and friends and think about what I would like to do.

My questions for her were things like 1) I already feel like I’m home bound all the time. How do people live on meds like this? She replied some people invest in better protective masks and live their lives as they always do. Some choose to just be more conscientious of staying 6 feet away of others and wear the masks they’ve been wearing all along. Then there are others who choose to live in a bubble and don’t leave the house at all.

Then I asked 2) What do I do about family get togethers when my sibling and kids come over? How do other people manage that? Am I supposed to ask them to mask up when they come in?  My Rheumatologist replied that’s up to you. Again, some people will ask their family to wear a mask, then there are those who will chose to stop family get togethers all together… but then there are those people who will just say “you know what, this is my family, we’re getting together and there’ll be no masks!”

I started realizing that these choices were widely varied and I was going to have to make it myself…

Janie