“Good time for a change
See, the luck I’ve had
Can make a good man
Turn bad
So please please please
Let me, let me, let me
Let me get what I want
This time
Haven’t had a dream in a long time
See, the life I’ve had
Can make a good man bad
So for once in my life
Let me get what I want
Lord knows, it would be the first time”
(The Smiths, 1984)
I think most of you know me as a pretty optimistic person. (Not coincidentally, at least I hope so.) But there’s one area of my life that turns me into a whiny, Emo little wanker: Crohn’s disease.
Of course, I didn’t feel that way for the many years that I was in remission. Back then I didn’t really even feel like I had a disease. But everything changed around 2014, when my body started metabolizing the latest drugs like they were Chiclets, and I could barely leave the house because of the number of bathroom events I had every day. By 2015, I was no longer a litigator.
These last four years have been challenging, to put it mildly. Shitty, literally. Some pharmaceuticals helped not at all, others intermittently. Most kept me in my current state: Imperfect Improvement.
Traveling with a chronic illness has provided its share of roadblocks too (pardon the pun), from avoiding states during infusion months where nurses could not follow an out-of-state doctor’s order, to flying back to Seattle every two months for therapy.
This time last year I was at the North Rim of the Grand Canyon, barely able to walk because of the chemotherapy I was taking to keep my immune system down. The drugs I take are immunisuppressants, which open me up to all sorts of infections, including the one that sent me to the hospital in Tampa, Florida, and a big, bad case of the flu this Spring in Canada.
Good time for a change.
In Fall 2018 my doctor and I agreed it was time to try Stelara, which I would self-inject in my abdomen every eight weeks. Entyvio, administered via infusion, had not put me in remission as we had hoped, not to mention it was a big old pain in the ass to travel back to Seattle every eight weeks to get it. (My insurance covers treatment only in the state of Washington.)
After an initial hitch when the syringe was mailed to the wrong address, I settled into a nice routine for the next six months, receiving the medication via mail and giving myself the shot, which is painless and simple. But by April 2019, I was sicker than I had been before. Colonoscopy revealed diffuse inflammation throughout the colon.
My doctor suggested we seek preapproval from the insurance company to increase the dosage of Stelara to every four weeks. (Two years ago, they refused his request to increase Entyvio.) Then he told me he was leaving the University of Washington.
Oh, come on! Good time for a change!
That was six months ago, so let me catch you up. (Don’t stop reading now; it’s all rainbows from here!)
The doctor allowed me to stop taking chemo.
The insurance company approved Stelara every four weeks. It only takes only a couple of days to get it in the mail when I need it, so that’s working out swimmingly.
I fretted for months about being able to follow my doctor to Virginia Mason, where he landed after the U of W. I found out yesterday my new policy on the ACA insurance exchange allows me to seek care at Virginia Mason.
I get lab work done every few months to make sure the drugs aren’t killing my liver. (Out of my pocket outside Washington, of course, as the labs are not emergent, but it costs me less than $100.) Here I am in Toledo this month.
(More good news: the Toledo blood work came out great!)
I feel as well now on Stelara as I did on Entyvio. No, it didn’t put me in remission either, and I still have daily symptoms, but at least I’m back to my imperfect baseline.
Should I need to go back to Entyvio at some point, it is coming out next year in a self-injected syringe.
Weren’t you ready for some good news? Lord knows I was.
This Post Has 12 Comments
Fantastic! Glad it is improving your gut health!
Good to hear the good news!!
That song. That band. 🙂 Courage and persistence, you have an abundance of them. You’re an inspiration. Safe travels.
Your tenacity, joy de vie and optimism are so inspiring! Take care
So happy for you Tammy! Sending positive thoughts and energy for your continued good health.
Thank you, Becky! I was looking at some old photos the other day and thinking of you and Gil. Hope you are both well.
Happy to read that things are on the upswing for you with your drugs and although it’s not perfect… the change has helped. BTW I love the serene spot in your photo. A perfect place to relax, listen to nature and dream of where to go next in your adventures. I would love that luxury of serenity in my own bathroom setting. Maybe I’ll knock out a wall so I can gaze at the trees, relax and dream
So will you be coming to the Virginia mason at all for a visit?
I would come over to see you and I know kathy would as well. We could have lunch/dinner or something.
We are seeing izzy/trudy tomorrow after an appt in Gig Harbor… will give them a hug for you…
Enjoying your adventures.. pleased to read your good news and happy trails to you my friend🥰
Great News xoxo
You Are An Inspriration to a lot of people, I hope u realize that. So glad you are In a stable condition .
Happy Trails.
So glad you are doing better! Your outlook on life is you got the world by the shorts! Take care my blogger friend! Come back to Iowa anytime!
Good news! Sorry you are going through so much but happy to hear that your situation is improving.
Glad to hear you have had a bit of improvement. I believe you will find that the support and treatment you receive from Virginia Mason will be positive, and will benefit you because of the way their network will enhance your doctor’s ability to provide you with the resources he needs to improve your health.