Mourning the loss of my former self

I am sick. I know I don’t look sick, but I am.

I’ve hardly been around – anywhere. I was social, very interactive with all the faces of people I love and hold dear. Internally, I’m still the same, but now I’m hindered a great deal from doing what I want and love.

While living in Florida, over a small length of time, I noticed something strange creeping it’s way into the joints of my hands. I visited an orthopedic and mentioned some concern of potential fibromayalgia, a chronic pain disorder. He laughed it off and responded with, “No, no, you’re too young for anything like that.” Phew. Okay, cool. I followed his instructions of treating discomfort with ibuprofen and wearing wrist braces as needed.

Life went on and we moved back to Ohio. My aches and pains came and went and I bottled them up and buried them deep, hidden away. I began dropping things and there were moments when my hands would feel non-existent due to the numbness. I began to cry while shifting positions in bed as I slept at night. I began losing hair, having trouble concentrating, experiencing shortness of breath and difficulty simply going about my day. Something was wrong and I knew it.

When winter came along, I suddenly could no longer walk without help, I could not button my shirts, turn on the water faucet, or open toothpaste. This was the scariest feeling, an overwhelming sense of helplessness.

I went to a new orthopedic who referred me to a rheumatologist. I prayed constantly during my long wait of getting an appointment, and the fear of the unknown was smothering.

In January, I was introduced to an angel. I sat in the office of Dr. Maria Thomas-John. After having blood work done and reviewing the results, Dr. Thomas-John looked at me with tears in her eyes and said, “Your rheumatoid factor has come back positive, and I am so very sorry.” I was also, funnily enough, diagnosed with fibromayalgia. I hold a deep, bitter grudge towards that orthopedic who laughed it off when I asked about that, and I still hold that grudge and I’m still trying to just let that go and move forward with treatment.

There is no cure for rheumatoid arthritis, commonly known as rheumatoid disease, since it is way more than arthritis. It’s a chronic, inflammatory disorder affecting the joints, skin, eyes, lungs, heart and blood vessels. RA is an autoimmune disease; my immune system mistakenly attacks my own body tissues.

Suddenly, I became defined by “suffers from chronic illness” rather than “writes stories, cooks, plays the flute, travels the globe” and all the other things that should define me.

It’s so hard to articulate the frustration of chronic pain. So many conversations with doctors focus on relief and ways to cope. I hate being in pain but even more, I hate that it stops me. It limits me. I have to stop whatever I’m doing while it sends me off to bed, clutching at heating pads and feeling deeply, deeply unfulfilled. The emotional impact of pain can often be worse than the pain itself.

Nobody really talks about what happens when you’re sick and you don’t get better but you don’t die, either. You get to live in the margins. There’s no getting better, no room for the chronically ill. Getting overwhelmed by little things like showering or cleaning is not how I want to spend my life. Sometimes the weight of the things I am no longer able to do hits me in the chest. Illness has taken so much from me. There is no way I could work at Disney and endure all that comes with being a high energy, over the top, enthusiastic cast member while on 9 medications and bones that fail me.

However, I bleed optimism, and being stricken with something as traumatizing as an incurable chronic pain disorder will not cloud my cheerful heart. Life is good. People are good. God gave us animals.

I know there will still be pain even after treatment and lifestyle changes. It can be managed, just not cured. It impacts your ability to follow career dreams, to interact the way you want with people, to do the simplest of tasks. It does not play fair. I need to become stronger and learn my limits. Family and friends won’t always understand the emotional impact fibromayalgia and RA has on my life. I literally mourn the loss of my former self.

I get tired of seeing disappointment in the eyes of others so I often force myself to use all my energy into making people happy. I want to be there. To support and congratulate you. To admire, encourage, catch up and have fun with you. However, my bones tell me otherwise. It’s very heavy balancing work, friend’s expectations, and family responsibilities without triggering a flare.

As I sit here staring down my newly prescribed bottle of methotrexate, a chemotherapy pill, for those who don’t know, I wait for my next appointment. I wait for the next step, I pray for answers. Lately, my favorite form of therapy has been when I catch a glimpse of children hop on their school bus and head off to a land of learning and growing. I can see myself at that age again, as a little girl, and I talk to her. I tell her all about life’s unexpected road blocks, and I let her know it is going to be okay.

Sometimes living with chronic illness means surviving off a steady diet of blind hope and patience.