Amen!
Melody said:
I agree with tk; if you can make it through the day without feeling consumed by pain, overwhelmed with fear, and worried about your future, then you're doing well!
When I finally received the diagnosis I was so grateful to understand what was happening to me. Then I read all the treatments! I have been on MTX, my fingernails finally healed but I was so sick! I have been on Humira for about 6 months. I feel great, have my energy back, I am not asleep on the couch, but my fingernails are falling off again. I am to scared not to take the medicine, I never want to feel that way again! I have decided to take the shot every 10 days, i can notice when I am ready for a new shot. Hope this helps someone!
Wow, that's identical to my situation, minus the MTX. I feel great on Humira as well; no mid-day (4 hour) naps and I feel like I have my life back, but my fingernails have gotten real soft and gross. It's ok, I'll take that over the miserable existence I lived before Humira! Thanks for sharing!
libby said:
When I finally received the diagnosis I was so grateful to understand what was happening to me. Then I read all the treatments! I have been on MTX, my fingernails finally healed but I was so sick! I have been on Humira for about 6 months. I feel great, have my energy back, I am not asleep on the couch, but my fingernails are falling off again. I am to scared not to take the medicine, I never want to feel that way again! I have decided to take the shot every 10 days, i can notice when I am ready for a new shot. Hope this helps someone!
I wonder this every day and glad to see someone else questions what is "good enough". The impact of this disease has been dramatic on my life. The chronic ups and downs with my physical, emotional and mental health are extremely hard for me to accept or understand. I question if I am just a big baby or do I have legitimate reasons to complain? If I can't understand what is going on with my health, how can I explain it to others? When do I stop searching for "good enough"?
I wondered the same thing. I started seeing a therapist and it has made a big difference. If for nothing else than to adjust to the changes PsA has brought and to come up with ideas for the new me. I discovered I was not a big baby but was dealing with a big disease and had to figure out how to pace myself to enjoy life to the fullest. Good luck on your quest with the new you.
Lamb, I'd given up holding my breath waiting for your response! I'm glad you finally weighed in, though. It is interesting to see how people judge the "good enough" issue. Like you (and many others who have responded) I consider what I'm able to do on a daily basis and I try not to dwell on the things I cannot. Like you (and many others who've responded) I try to not blame every itch, pimple or ache on the disease, and (unless I feel so bad that I'm prevented from doing something I _really_ want to do) most days I think I'm doing OK.
The underlying rationale for my question is about the wax and wane of the disease and about the diminishing impact of some medications over time. Where is the tipping point on the balance between "good enough" and "no longer good enough"? That particular decision is one that certainly can be helped by tracking the medical realities, as you point out, but the decision to make a medication switch is probably less about science and more about quality of life. It is this particular tipping point and the combination of science and quality of life factors that go into the decision-making process that I'm most interested in exploring.
tntlamb said:
Sorry for the Monday morning rant. I was avoiding this thread. as Rather than answering the questions you asked, it started to become, as way too many have of late, another opportunity for folks to rant about their symptoms. I was afraid I might say something to the effect of get off the pity pot and do something about the disease but I didn't.
The less pain and swelling the better....more function of the body, able to do tasks you maybe couldn't before. That's the way I think of it. I think you have to look at all aspects of the effects over all.
I'm on Plaquenil and found improvement in swelling but the pain was still pretty bad. I noticed a different once Leflunomide was added. It's only been about 6 weeks on L but there is significant improvement. I can get up and clean the house...I could not have done that even 2 months ago. I don't have to have a nap all the time anymore. I still have some swelling...good days and bad and not as severe warm red areas of pain but I need to give L at least 3 months. So I'm keeping my fingers crossed. The last 6 weeks I've felt more normal than I had the last 6 months.
I'm thinking so far so good.