I am afraid to say it, but I think I am…improving. I have actually had 4 good days out of the last 7, and my bad days weren’t that bad. I still have some aches and pains on the good days, but I guess that is to be expected? I have a goal in my head of having 3/10 pain and medicating with NSAIDs and a Vicodin for break through pain, along with my PsA meds. I think I am getting near that goal. I don’t know if I should expect to be pain free? I’m a little bewildered by how fast this change has happened. I’ve felt like the stuff you scrape off of the bottom of a shoe for months now. How is it possible to have such abrupt change?
It’s weird, but I am a little scared. I’m afraid to do too much, thinking that if I overdo it I’ll go right back to the hell I was in. But it’s funny, today I was helping with dinner and I opened a pull top can without using a spoon to get it started for me. My husband just about passed out! “YOU OPENED THAT CAN!” I looked down at it a little bewildered to see that I had, indeed, opened a can. I will just take it slow, until I regain some of my strength and confidence.
I think The 4th Remicade infusion really did it for me. Its slow progress, but, by god, it’s progress! I am adding a touch of MTX to my regimen (injected, of course!). And I am making an appointment with the primary to start tapering off of opioids. I’m also adding massage and warm water PT to help me with pain while I step down from the drugs. I love the new Rheumatologist. He is honest, into reading research, a great educator, straight forward, and doesn’t mince words. My kind of guy.
I just wanted to write this to give everybody that is hurting, struggling, and frustrated a little bit of hope. I was at a point where I had accepted disability as a part of my immediate future. I had the idea that, “This is as good as it gets.”. I guess I was wrong. I think I had lost hope for anything to get better because I had been miserable for so long. Since my last infusion on 2/25, my husband and I have seen marked improvement for the first time. It is very slow, but we are sure that there are changes happening, like opening the can. Yesterday, I couldn’t open soda bottles; today I can.
Please don’t lose hope. I know how awful and frustrating waiting can be. How hard it is to find a doctor who listens. How much we worry about the added emotional and financial strain on our loved ones and mates. How life altering this can be. How lonely it can feel. Please continue to hold on to hope. Maybe it won’t be this drug, maybe it will be the next, but don’t ever lose hope for your life.
So Many Huge (((Hugs))) For All of You!
Claire Elaine Milam