Coping with Psoriasis and Psoriatic Arthritis: My husband Jeff was 39 when it happened. His bio meds started to fail after 3 years of good results. We were Disney World in Florida the 1st time we went as a family, it was December 2008. My husbands arthritis came back with vengeance. He was on Remicade at the time $3200 per bag of the Biologic Drug to keep the Psoriasis and Psoriatic Arthritis away- Thank god for insurance. My husband limped through Disney as his joints and muscles ached from the arthritis.
When we got home Jeff went to the Doctor they decided to up his Remicade and put the treatments closer together. So every 4 weeks Jeff would go for 8 viles of the Drug $5600. The remicade stops his over active immune system to hopefully slow down the affects of the arthritis.
At first the drug infusions would last 2 weeks.. then Jeff would suffer for 2 weeks, until he could get another infusion of the drug. During this period we would schedule our family plans during the 2 weeks knowing that Jeff would be mobile enough to participate in our family’s lives.
Then the drug only lasted 7 days..
7 good days to be a family not affect by arthritis.
7 good days.. he could spend time going to his kids events.
7 days of living..
….then the other 21 of pain.
Then April came drug failed and my husband had a reaction and could no longer get a remicade. He went in to severe allergic reaction while getting his infusion , oxygen was required.
The 7 good days were lost
Jeff was at the end of the arthritis drug list. He taken everything the doctors had available and built up immunities to all the current drugs.
He was 39.
The true darkness set in. My husband went in full arthritis mode. The “dark days” or months as I like to call them. Jeff’s arthritis got so bad he could barely walk. His feet became huge, he wore slippers 2 sizes to big, he could not close his hands,and Jeff could not climb stairs. His inflammation levels were off the charts.
Jeff dragged himself to work everyday.. which is why I think, people believed he was ok. The reason Jeff worked, he was paranoid about loosing health insurance. At no point during “the dark days” were things ok.. he would parking Handicap (he had a tag at this point) drag his body to the door with a cane, ride the elevator up and sit at his desk all day. His co-workers assisting and picking everything up from him at his desk. They watched him suffer too, his smiling personality gone.
Another reason he worked besides the insurance? Jeff thought he was too young to stop working and go on disability. He wanted to contribute somehow, he needed a reason to continue, and providing for us was it … he wanted to live somehow.
Jeff no longer slept in our bed or tuck in his kids since he could not do stairs.
Jeff asked that he no longer drive or watch the kids. The reason was he could not help or react if something went wrong, he could not save his own children.
He lost 50 pounds because it he could not cut his food and hurt to eat, the arthritis was every where.
The cane was in full use to assist him so he did not fall and the walker was ready to go when he needed it..
He was 39
Arthritis Affects on our Family:
During that time I was trying to keep everything “normal”. I went to hockey practice, dance, worked, and more. I made dinner every night, cleaned, did everything. Including taking care of Jeff. He need help dressing, showering, and in the bathroom. I did it all like it was ok, Me ..I normally speak up if I am unhappy, during this time I existed never saying a word about how terrible it really was, feeling as people never really got it. I was dieing inside watching him suffer.
During this period as Jeff’s arthritic caregiver I questioned everything: My marriage, my family, my friends, our home, and beliefs.
While Jeff was at work ..I would cry and cry, not want him to see the tears. I hated the feeling I was having 38 years old destine to be a caregiver for this arthritic man with no end in site. I gained weight 298lb, stopped taking care of myself, and existed as a mother. I was also diagnosed with diabetes.. the doctor told me with the stress it could have made me flip the switch from borderline to full Diabetes. It also explained the depression. Then the guilt of I am not suffering like him.. so it was not ok to feel sad.
My son age 8 at the time .. who was always close to his father felt pushed away he wanted thing to go back to normal. He wondered if he would get this .. what Daddy had. He acted up in school and was good at home to not upset is fragile dad and crumbling mother. He grew up so fast during this time, he became more responsible. That is not the way you want your child to be come responsible because he has to. His only wish to go camping and fish with his father..
Jeff saying “Buddy I cant do it.. I cant walk through the woods”
My heart died a little at the little boys request.
My daughter 3 at the time, begged to sit on her dads lap , but she could not. Jeff’s arthritis set into his rib cage, where the tendons meets the bones, which also made it hard to breath. His arthritis was in all his tendons making it difficult to be touched. I watch as Jeff was crushed telling his little girl she could not sit on his lap.
Hope:
One Sunday in June after 6 months, I cracked emotional at church someone asked me how was Jeff, I lost it, Crying in the hall in front of everyone. I told the truth.. he was not having anymore 7 good days. We were existing.. I was worried about him, our kids, and I was sad. The people at church stepped up .. they brought meals to us for 2 months.. hope and happiness returned to our lives.
We started seeing many of the best doctors in the area, finally a doctor gave him a newly approved drug. It took 6 months to work but Jeff got back in to remission. He has a better diet, reducing stress, and tries to work out. All which help.
Here is the thing it will be back, I am realistic. it scares me terrible to go back to those days.. Arthritis always comes back. It is a good chance my children will get it also. We need the Arthritis foundation and researchers to continue to discover relief and cures. We need more research and more drugs .. because he is only 42 and He has to walk his daughter down the aisle in 20 years..
World Arthritis Day is Tomorrow October 12, 2012. Please help if you can and raise awareness.