I'm here to agree RA is the meanest disease (other than cancer). Dave, I will have to read your story, and I'm so glad you have found a way to come to terms with it. I have not, and I'm going on 20 years. I'm ashamed to say I took good health for granted. I see that now. There was a time I was so active, my husband and I did a lot of things, white water rafting, swimming, being the ones to volunteer at school with our children, I worked full time, as he did. We also have always been active church goers and volunteers. I guess I've gone through times of acceptance and tried to manage better. But my heart goes out to Saved by Grace. One reason is that you have had to deal with this disease as a young mother. I'm so glad you have a supportive husband, because that always makes a difference. My husband of 44 years has really been strong through all I've been through. I don't know how it would've been if he had not. It's funny how RA just crept into my life, after I had worked 16 years at a dental office, then went back to school for my teaching degree when my children were older. I had always thought I'd teach school, but when I finally did make it, in my 4th year of teaching I found out I had RA. I didn't know much about it, so I researched and learned as much as possible. I was able to teach 10 years, but the last 3 years were so difficult.
I first started on MTX and Remicaid infusions. It helped at first, but after a bit of time my liver enzymes went too high, so I had to come off the MTX. I knew something was wrong because I started having a hard time giving myself injections, when at first I didn't. Then I started having bladder infections and sinus infections, chronically. But I pushed on with my job and with life until I found out I had bladder retention. The urologist said he wanted me to catheterize myself every day, or I could be on medicine. I chose the medicine and it helped. Sinus surgery helped my sinus problem to a point. But I still kept getting sick. I didn't want to miss work because I had a class of students waiting on me to come everyday, and I didn't want to let them down. So I kept on. Then my back began hurting chronically. I found out I had degenerative disc disease, but couldn't find time while teaching to have surgery, so I tried to manage. My husband saw it was too much for me and made financial arrangements for me to stop teaching. We didn't know our state offered disability for teachers, and I was able to continue being paid through the state until I received federal disability. In less than 2 years I will start receiving regular social security. I've hated the stigma that comes with disability, although I cannot work.
After I left teaching, the back surgeries began, and there were several. I have fusion in my lower back and in my neck. It helped the pain at first until more damage would happen. Now I have a neuro stimulater that has helped a lot. I've had other necessary surgeries to correct damage from RA, and something has happened to me emotionally. I find myself getting more and more bitter. Now I have COPD (nonsmokers), high blood pressure, and high cholesterol. I give myself Orencia injections, but have been off awhile so my pneumonia could clear up. I still take Arava, and Plaquinil. I know I have to get a handle on everything, but so much is happening, I feel I'm drowning. I live with bitterness and fear of more health problems, more surgeries, more sickness. And I have a fear of becoming crippled. The list goes on and on.
I want to be happier, to feel better. I love my husband, 2 children and 4 grandchildren (and my mom who is in a nursing home). I can pretend pretty well, but I don't want to go through life pretending and not telling my family how sick I am, and I'm smart enough to know if I don't come to grips with this, the bitterness will only grow and I will lose myself. (For those wondering, I do see a counselor and psychiatrist, but I don't open up fully to them.) I'm ashamed of my hidden bitterness, my being tired all the time, the pain, the fear. I'm so tired. Just to emphasize this, suicide is NOT an option I've ever considered, but sometimes I feel like I could just lie down and give up. Just tired. I've tried many different things to help, PT, swimming, but I always end up with a joint injury.
Someone can maybe help me get my mind back on track, help me do something differently, because I love life and I want so much to embrace it. There must be a way, some way that won't backfire on me.