Jen,
Thanks. This helps a lot.
I had gotten very hopeful, not for a cure, but for some of the super symptom control like I see others having. My “fixed” is having meds that treat the disease that make it so I don’t wake up every day with PsA as the first thought. I like to think I am tough. I am pretty proud of how far I have come (with lots of help) in the last year. But, I had gotten really hopeful that the new rheum had a trick up his sleeve. So, now I am dealing with that grief all over again. Plus, I’m kicking myself because I allowed myself to hope.
I had a great conversation with my wonderful primary this week. It included a reality check. It hurt, but was needed. I have known her for years and she is as much a friend as a doctor. I’m glad that it came from her.
Thank you for writing. It helps too.
Jen said:
Oh grumpy, fixed? We’d all like to be fixed.
But as my amazing husband reminds me when I get brain fog…
Well now you just know how everyone else feels their whole life… (Referring to him suggesting I’m smarter than him). Grumpy, I suspect you would be too!
He suggested that perhaps modifying my expectations might be worthwhile…
My modification of expectations had been to be comfortable enough, and happy enough (in the consideration that both TNF and pain causes depression), that my presence in my family is positive, and I enjoy life.
I’ve been extraordinarily lucky to get more than that, and am grateful every day. I know it may run out any day…
But I haven’t had a day without mild opioids in about 6 weeks. I’ve been trying to put on weight and failing for six months (I’m not underweight - very healthy, just a bit aware how useful it is to have a reserve when you get sick). I watch everything I eat - to try and maximise nutritional value whilst diminishing flares to try to put on weight (I’m sure you know that routine!)
I know you’ve been doing this longer than me, and as an RN know more. But fixing is probably a while away. Perhaps stem cells, maybe generations.
In the meantime, I wish you all the strength that I know you have. If there is anyone that can persist, it is you. And it sounds like you have a great medical team - well deserved
