Sometimes I am proud of us

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After a diagnosis of an incurable disease, it takes a while until we understand what it actually means. I remember it so well. I knew my lab results would come in that day or the next and when I saw my doctor’s number coming up on my cellphone, I excused myself, grabbed my husband’s car keys, and walked out.

I needed to be alone. I had researched my symptoms for a while and had dealt with the pain in my joints for quite some time before I made an appointment to get medical advice and attention. I had a feeling the news wouldn’t be good.

“Your Inflammation markers are through the roof and you need to see a Rheumatologist. It’s not Lupus, I am absolutely certain you have Rheumatoid Arthritis (RA) and I can’t help you any further, but will manage your pain until you have an appointment with a specialist.”

At the end of the conversation, tears were running down my face, and a wave of helpless anger washed over me in slow motion. Once again I felt the unfairness of life firsthand. The helplessness I felt at that moment was too much to handle.

Incurable! It means it’s not going to go away on its own. It means I will have to deal with it for the rest of my life. One could be tempted to say UNTIL DEATH DO US APART.

What did I do? I went back to the restaurant, told my husband the news, and went to the Sushi Bar and for the next two months, nicely drugged up with steroids and other pain meds I ignored my disease. I pretended it was non-existing until I had my appointment with the Rheumatologist.

It helped that neighbors and friends had all kinds of good advice. “You need to order these Veggie and Fruit pills they do wonders for me,” a customer told me, and somehow she forgot to tell me that she was a wholesaler in that pyramid scam she fell for herself not so long ago. Of course, I ordered the overpriced capsules, of course, they didn’t help.

My neighbor insisted I needed to talk to her pastor’s wife. “You need to talk to SO-And-SO she has it too and she is doing fabulous.”

I got so many recommendations on what to do and what to take, and it was all meant to help me, but sadly nothing worked. People mean well and I knew to take everything with a grain of salt, but somehow, against better knowledge, I always got my hopes up each and every time and when another miracle advice didn’t work, it crushed me -again.

Lewis Capaldi, a singer and songwriter from Scottland who happens to be a very frequent visitor on my playlist, and whose YouTube clips from the Graham Norton Show are my go-to when I need a good laugh, recently got diagnosed with Tourette Syndrome (TS). A neurological disorder, also incurable, and most certainly a hard pill to swallow when you are a singer.

I watched him in a YouTube clip after his diagnosis and he reacted a lot like I did in 2014 after I got diagnosed with my autoimmune disorder. Optimistic and positive, even making fun of the situation, still somehow believing that life would go on and not much would change.

Of course, life does go on, but modifications have to be made, and as so often it requires a village. Doctors as well as medications, and the patient’s discipline and willingness to adjust are tested more than once. Friends and family who love and support you.

Being restrained by disease and feeling and accepting our limitations for the first time is a moment we won’t forget. The first time I thought, “I can’t do this anymore,” felt almost like a relief. It was then that I finally realized I had to do all I could do continue to to live the way I want to live.

In my case, it’s ‘only’ a weekly low dose of a chemotherapy drug, combined with a very strict diet and (hold your horses) some supplements that actually work and I live a happy life, almost without restrictions (other than the ones I find in my head).

Lewis Capaldi gave a concert in Glastonbury, England when he struggled on stage during a song, and the way the audience reacted when he was pushed to his limits and couldn’t perform the way he wanted to, shows how wonderful we human beings can be. I too would have sung with him -and for him- if I would have been in the crowd.

His face shows all his emotions. Feeling the limits as well as the love from so many must have been overwhelming. He canceled now all his concerts for the time being. I know, he, like me, will find a way to continue doing what he loves.

This clip means a lot to me. I too have people on my side who show me love and support in many ways.

Sometimes I am proud of US humans. Be supportive if you know someone is struggling, please!

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