I Call RA a Thief

I call RA a thief. It's stolen a lot from me. Even though I have plenty of evidence -- footprints, fingerprints, confessions -- it's not been possible to prosecute.

How RA impacted my career

As a therapist (I stopped doing that work several years ago), I told my patients that my job was to help them find hope and then maintain it. I was mostly successful at this. While I was working with them, RA was working on me.

It didn't take long before the work was too much, because the pain was so extensive. Blasted RA trying to win.

New symptoms due to medication

One job gone because of the pain and the pain meds. Then the development of insulin-dependent diabetes due to prednisone usage. I've been on prednisone now for 12 years. I got my dose to 5 mg once. It lasted for 3 weeks.

An interesting position showed up...short-term, good-paying, no benefits except for parking. I used the money I earned there to pay for my brother to get a CNA certificate. He would need that to help take care of me over the years.

In that interesting position, my knee caps dislocated, and I began to use a walker. Mostly, I was glad that I could keep doing my work through the assistance of a walker.

While I worked there, along with the dislocated knee caps, the Division of Vocational Rehab--in their efforts to help me continue to work--provided a cement ramp at my home. Moving in and out of the house was much easier. Gratitude. And curiosity about what they could see coming that I wasn't aware of yet.

When the position finished, I found another position within the organization, but it was similar--without stability or benefits. My fear was rising because I didn't know what was next. When nothing appeared to maintain my stability, I learned that I might look good on paper, but I certainly couldn't deliver. It was worse when someone actually said those words to me.

This was so painful to hear, but understandable. Yes, it was understandable. I had worked for years to develop the skills to have an impressive resume. But now, as the disease was looking like it was settling in, that impressive resume meant less than anything. I felt like I was nothing. My career that had been moving along at a comfortable pace was over.

The only opportunity to use some of my social work skills was to find the patient assistance programs for biologic medications. My work on my own behalf prevented the on-staff social worker from spending her time on me. I submitted applications, received authorizations, started medications. So my career was good for something. It didn't feel particularly good.

Grieving for my old life

Through the years from the first biologic, I continue to grieve my life. At 45, before I began seeing a rheumatologist, I had recently lost a lot of weight. I was fit and healthy. At 57, I have regained everything plus some. I use a wheelchair most of the time. I miss my fast car (a Chevy Impala SS) and the fun I had driving it. Now I drive a wheelchair accessible van. I’m am so pleased to have it. But I miss low-slung cars that hug corners.

I miss music as my hands hurt and shake too much to play any instrument, and the rest of my body hurts right along with it. It is similar for most crafts, although I still try to do bead work. I practice calligraphy without improvement. All of these are best done in the morning and while I am well-medicated. By noon, any close work is best not attempted.

I miss swimming because I am susceptible to infections from germs found in the water--swimming pool or lake. I've been hospitalized with cellulitis because of an infection found in a swimming pool.

I miss my life.

Can you relate? Share in the comments or share your own story.