Well I went for the visit with my rheumy today for last visit before I start Remicade. For those of you who don't know me I am on methotrexate and coming off Humira. She did an ultrasound on my hands, wrists (which is a new one for me), my left foot and another new one my left knee. This was the first time I actually got to see the damage to my joints and tendons. It was shocking. She was actually the one doing the test and kept pointing out to the technician how I was a classic case and all of my problems. I have to admit I just started to cry, it was so overwhelming. I thought Humira was working for me but apparently not so I am starting Remicade on Monday. I am so thankful that my insurance will look at my treatments and will pay for all of them, no matter what they are!
I so thought I was getting better with Humira, but not, I guess I am a little down tonight, do we really get better?
We don't really get better MAT, unfortunately PsA is still incurable. I know today was tough on you and I am very sorry for that. I find I frequently have gone into a bit of denial each time I have had a remission, no matter how short! And today you are mourning an end of the denial. Feels a bit like a slap in the face doesn't it? I am here to tell you while we do not have a cure yet we do have remissions and we can have a wonderful and meaningful life with PsA. We do not have to let PsA define us unless we choose to. I am no longer able to work but I do volunteer work, visit museums, garden centers and Botanical gardens, all kinds of interesting things I had less time for before. And meet wonderful people, here as well out in the real world. I even had the extreme honor and fun of officiating at a wedding this winter for a dear friend who is also a member here. Life doesn't close down, it opens in new directions as long as we let it.
I am very sorry you had such a hard day. You have come face to face with the fact that this disease marches on whither we are symptomatic or not. It is a fight we are called to but you are not alone. We are here to fight right along side of you. I will keep you in my thoughts and prayers while you grieve for your old life and body and later when you rise again to greet your new day and life. <3
MAT, I’m so very sorry, and echo Michael’s thoughts. You, though, are the same person you were yesterday, the same caring Mother and Grandmother, the same loving partner. And you are incredibly lucky to have a smart rheumatologist who was concerned enough to get her ultrasound wand out, and who decided to switch to meds that your insurance will cover for you.
The sun will shine again, as disappointed as you were today.
Hoping it goes well on Monday!
Hugs, MAT!!! What an emotional thing to go through. One of the hard parts of dealing with PsA mentally and emotionally is coming to terms with the fact that the damage that has been done is irreversible and the disease incurable. However, that doesn't mean that we can't FEEL better once we get on meds that work for us.
For me, the difference between treatment with Enbrel (that I thought I was doing well on) and Remicade was like night and day. I didn't know I could feel as good as I do on Remicade. Enbrel got me out of my wheelchair, but I still used a cane a good deal of the time. Remicade got me not just walking on my own two feet, but hiking and kayaking and doing things I hadn't dreamed of being able to do again. I hope you experience that same sort of difference.
Thank you ladies for your love and support. It does really mean a lot. You guys know that I have fought this disease every step of the way and have been in denial, thinking this could not be me. Sigh, OK so it is. Reading your stories and posts really makes me feel better and think that there is really hope for me. Thank you for supporting me and I promise to be a better person, try to understand this disease and will try to help others. You guys rock for your support and insight to this disease. Keep on doing what you are, make all of us feel better! The best support system ever
But wait, MAT! You make ME feel better too. I know that I can count on you for a kind word or a kick in the pants when I need it.
I do believe there is hope for all of us to carry on with, and despite, this disease. But it takes a village … and the village is here.
I am sorry you had such a difficult appointment. I have had a couple of those appointment where the reality overwhelmed me, even when I thought I was coping with it all.
It occurs to me, if you have not had this type of imaging before and have no baseline then it isn't clear that all this damage happened while on Humira. Without multiple images to track it over time it is difficult to say. It may be more damage occurred prior to Humira the during. More importantly, you now have a baseline, a detailed assessment. This means your doctor should be able to assess how well the new medication works.