Living in pain and trying as hard as I can to not let Psoriatic arthritis eat me alive!
I was an extremely active person hiking, dirt biking, swimming, all the time. In 2000, I began to really struggle with pain in my hip joints terribly. My active life began to crumble and I was not even 30 yet. I went doctor to doctor asking for help. They would pass me on to another doctor.
Starting to experience PsA symptoms
My back began to give me problems at this point also. I started to have to crawl up the stairs at night after working my 2 full-time jobs. I would go to the doctor's specialist after specialist and no answers. I would tell them that I felt like my hips were broken and that I couldn't go without a cane anymore and no one was helping.
Finding a doctor who will listen
I was in 24 hours of pain and agony. I would see chiropractors, orthopedic doctors, pain management doctors, rheumatologist, even psychiatrist. I was ready to completely give up in 2007 going to doctor's after so many horrible experiences. I said to myself open the phone book, yes they were still around.
I found a pain management doctor with an Italian last name and since I'm 100% Italian I figured this would be a great last try. I explained what I was living like, how I felt like my hips were broken, how my fingers would swell up terribly. How I had to crawl up the stairs at night after working my 2 jobs. He asked, "Has anyone ever x-rayed your hips?" I said, "no, never!"
Finally getting a psoriatic arthritis diagnosis
He had it done right in his office. He came in very upset and apologized to me that so many other doctors ignored me. He said he needed to do blood work and see what my Sed levels were. Since no doctor has even done this, I was game. He explained that my hips were so badly eaten away by this disease, which he was fairly confident that it was psoriatic arthritis. He said, "you need both of your hips replaced!"
Starting treatment for PsA
Set up for my blood work and with a hip replacement surgeon. 2007 was the 1st time my voice was heard. My Sed levels came back super high. He had began giving me anti-inflammatory meds to try and help and also injections into my hips and back. I started to suffer so much less.
In 2010, I tried a hip debridement to try and put off replacing my hips before age 30. No success. In 2011, I had my right hip totally replaced. Unfortunately, ended up with a severe infection that almost killed me. But I fought on. Unable to walk without forearm crutches for 2 years and decided I would wait until my left hip couldn't work to have it replaced (due to scare of bad infection with right hip).
Fast forward to 2017, my pain was there, but was being managed. My left hip had to be done now, I was back on forearm crutches after fighting so hard to get off of them. Great success with left hip. No more crutches. I tried infusions of Remicade, but got no help at all and gave up on them. Taking pain meds when desperate only, taking Mobic daily, and going on disability in 2010 had seemed to allow me to partially function again.
But this disease has a way of going at you when it wants. I had a heart transplant in 2022, which was a wonderful success, except I can no longer be on anti-inflammatory medications. 6 months after heart transplant, my knees started going nuts. My body is very upset with me stopping the Mobic.
Determined to stay positive
I'm battling with doctors and insurance to get the help I need and going to physical therapy and pain management and trying big city specialist that have no clue what to do with a heart transplant patient that has psoriatic arthritis. Fun times. I am determined to not allow this to eat away at me and my new life with a new heart. I lean on my faith! I know I will get the help soon.
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