Welcome!

Welcome to Psoratic Living!

My name is Tonya. I was diagnosed in 2012 with Psoratic Arthritis after 19 years of unexplained occurrences of joint and ligament issues. It wasn't until I sought out treatment at a teaching hospital, that my various doctors and I began to piece together a my lengthy list of reoccurring episodes of inflammation. The largest stumbling block for me is that I do not have psoriasis. Secondly, as an obese mother of four,  I had brushed off occasions of knee pain, elbow pain, shoulder pain, feet pain, etc as just part of being fat and getting older.

In September of 2011, as we were preparing for my daughters wedding, the reality of something being seriously wrong hit. As I created the floral arrangement for my daughters wedding, my hands were extremely swollen, stiff and painful. Something that should only take me 15 minutes was taking hours. No amount of rest, ice, heat, stretching or over the counter ibuprofen helped. I saw my family doctor and she wasn't sure what was the cause of the excruciating pain. I was unable to even use my hands for several hours in the morning. It was only after hours of heat, stretching and flexation was I even able to hold a glass for water. My PCP refereed me to the Rheumatology department at Oregon Health and Sciences University. Of course, there was about a 6 month wait to be seen. In the mean time I had a joint in my hand that swelled, became red and inflamed and hot to the touch. I was unable to flex or extend that joint.  After a same day appointment with my PCP, she referred me to a local orthopedic hand specialist who could see me within 48 hours. After xrays, strength testing and examination, he diagnosed me with inflammatory arthritis. This was only the 4th time in all of these years, where I actually had visible redness and swelling directly around a joint. He put me on a short round of predisone, a prescription for Celebrex, suggested compression gloves and told me to keep my appointment with my Rhumatologist.

Of course, by the appointment with the Rheumatologist all visible signs of redness and swelling had dissipated. However, the severe pain, morning stiffness, hand weakness and decreased range of motion continued. This appointment was the beginning of a myriad of test (Blood work, xrays, MRIs and multiple trips to the rheumotogist office for any sign of pain, swelling, redness, etc. so the Doctor could visually inspect the symptoms for himself and document my medical conditions in my records.

It still wasn't until September of 2012 were we able to confirm the diagnosis of Psoratic Arthritis. I scored a 4 out of 5 on the CAPSCAR diagnostic criteria. Since I did not have a personal history of psoriasis, my mother had sever plaque psoriasis that presented in her early 30's. The only non-positive finding on the chart, at the time, was Psoratic Nail Dystrophy. In hind sight, I did have nail changed on three of my toe, but it had been misdiagnosed as a nail fungal infection 10 years prior.

The journey to diagnosis was long, tiring, overwhelming and at times felt life ending not just life changing. Auto Immune Inflammatory Arthritis has no cure. Treatments include pills, injections and even chemotherapy infusions. Even though there was a since of relief in having a diagnosis, there also was a overwhelming feeling of loss.  In addition to trying to learn all I could about this life long incurable debilitating disease, I found myself deep in a complicated state of morning. The Grief of loosing the life I once had and the future that I had envisioned with my husband, children and future grandchildren was more powerful than any since of loss I have ever experienced.

I joined multiple support groups, Facebook groups and email lists to help me gain a better understanding of my disease. I wanted detailed of what was going on inside my body. I wanted information on a cellular level of the changes, reactions and activity of my disease. Luckily, my doctor was also and associate professor at OHSU and took the time to answer all of my question. He also provided me with information packets of all of my treatment options and let me also weigh in on which medication I wanted to try first, based of the information he provided and what I had learned on my own.

It has now been four years since diagnosis and I find I am still learning on a daily basis the best ways to live with my disease. I am also realizing that there is no one size fit all program in treating Psoratic Arthritis, much less something as complex as a auto immune disease.

I have felt prompted to start this blog and website in hopes of sharing what I have learned and gathered so far. Medical advancement has come a long way over the last twenty years since the first biologic treatment for Inflammatory Arthritis were introduced, however, information for a Psoratic Arthritis Patient is still hard to locate by an average patient.

I hope you find the information I share helpful and that you are able to feel some encouragement in knowing that you are not alone.

My first suggestion, take a deep breath. Even though you may not feel like it is, life will be okay. YOU WILL BE OKAY.  You now will have some changed in your life but your life is not over. You will have a new reality. A new version of life. But it is not over.

Some of you, like I did, will start to feel a deep since of loss. Grieving is a normal emotion in situations like this. I just wasn't aware that some grief looks a little different. I now know, that what I encountered was considered Complicated Grief.  Complicated grief, unlike normal grief lingers and can get worse. For me it was profound. Debilitating even. I found that this prolonged mourning was preventing me from emotionally healing and working though the Five Stages of Grief.  It wasn't until I actively started working through these stages was I able to find Acceptance.  For me, this stage didn't come easy. Finding a way to be "okay" with my new normal took time, effort and will. It also took Faith. I relied heavily on my religious faith.

We each have to find what will help us to get to the acceptance phase. Your steps to "okay" may include other things and that is okay. We each have to work though this process in our own way and in our own time. I just want to make sure to say, if you are struggling, please reach out to others. Either in a support group, online group, your relatives, your doctors, or your religious leaders. Please do not suffer alone. If you need help and don't know where to turn please reach out the American Foundation for Suicide Prevention, they can help you find someone to walk this path with you.

In the United States, you can call the National Suicide Prevention Lifeline at 1-800-273-TALK or 1-800-273-8255 to reach a trained counselor. Please don't suffer alone.

I will be posting more weekly, as my health allows. Please join me. We all can take this journey together as we learn about...Psoratic Living!

Much Love,
Tonya

The Wedding Flowers- that started this journey....seeking answers!