I have a disease that can take up to fifteen years off my life expectancy, and I happen to find this highly inconvenient. I have been setting the age of my demise at 80′-something, so fifteen years less would mean I could say bye-bye with 65, which is just not an option. Don’t you dare cheat me out of my years!
As usual, I am hiding behind humor and sarcasm, it has worked fine so far, so let’s just go on with it! The truth is, hearing about it took my breath away. Everything about this disease has either left me speechless, or it seems to suck the air out of the room I am in. Is there a word for it?
Then there is the other side in me, the one I cannot shut up even if I try hard. “Aren’t you lucky? At least you know what you are dealing with, other people don’t.” Sometimes even I can’t stand my optimism.
I remember when I got diagnosed. July 2014, the doctor called me when the test results were in. We were having lunch at a Chinese buffet restaurant, I had a plate full of fresh-made Sushi in front of me when the phone rang. I saw the number and excused myself, I mumbled BAD RECEPTION and walked outside to the car. I wanted to be alone. I had a feeling what she was going to say and she did not disappoint me. “Rheumatoid Arthritis,” she said and tears started running down my face. I had read up on it for days, ever since the possibility of having it had come up.
RA, an autoimmune disorder, so often mixed up with regular arthritis. One more person telling me, “I have arthritis too,” and my head will split open. But can I blame them? We don’t know anything about diseases we never had until we actually have to deal with it. We don’t know how cancer feels like, we don’t know how a mental disease, or cardiac surgery can affect your life until we have to deal with them. Human nature, or human shortcomings. No matter how hard we try to walk in each other’s shoes, we can’t feel what other people feel. We say we know, but we don’t. We imagine and we don’t even come close.
Arthritis vs Rheumatoid Arthritis: One attacks the bones, and while painful it can be kept in check with medications and in severe cases with surgeries, the other one is an uncurbable disease that attacks your joints and organs. From small joints -fingers and feet- to larger joints. The spine, the neck but it doesn’t stop at your joints, it goes further to your lungs, heart or brain. An ongoing inflammation in your body is caused by something we don’t know. A 24/7 war inside you. Your own body attacking you.
Stiffness, a pulling sensation and pain that cripples us to the point that opening a water bottle can seem like a real task and turning a doorknob bring us to our knees. Walking becomes a task. We feel fatigued, not just tired, but the feeling one has when you have the flu. Taking a shower leaves us winded, cleaning the house seems impossible. Depression and balance problems. They call it the PULLING DISEASE and now I know that it is the perfect description. Every tendon in your body seems too short, and you are pulling against the shortness at all times. Lifting an arm seems like you are running a marathon, walking upstairs almost kills you, and even laying in bed hurts. Physical activities leaves you sore for days. Headaches that you could get a patent for, eye problems, sinus problems. It is a long list, this disease doesn’t leave a stone unturned. It knocks your socks off.
“Rheumatoid Arthritis, the sickness doctors don’t want to have,” I read. “Chickens,” I say.
There are medications, which of course won’t cure us and most of them only help temporarily. The expensive ones, the injections costing thousands of dollars- to make sure the poor and the uninsured in this country will never have excess to it- seem to give us relief but they come with heavy side effects. The cheap solutions: Hydroxychloroquine, a malaria medication that can cause blindness, steroids and heavy pain meds are often more effective. Chemotherapy drugs, taken for a lifetime.
People with RA meet on a website called MYRATEAM. Only there can they find people from all over the world who can understand their misery. I signed up looking for alternative treatment options, but the sad news is most of them don’t even want to try an alternative lifestyle if it requires a little bit of discipline. “Give me a pill and meds, don’t make me give up what I love.”
It shocked me beyond belief. I needed to see how bad it can get, to get myself in gear.
These days I only log in when I am tempted to give up my Hippie Lifestyle.
So the good news is I know what I will die from -if I am not shot somewhere by a moron with a gun who shouldn’t have one. Bad news, I am not willing to accept the verdict! I appeal! “Screw you RA,” I say, “go away!”
I was -still am- on a mission, and speaking a few languages gave me opportunities others don’t have. I went on a quest to find alternative treatments all over the world, and I hoped to get answers to some of my questions.
I met amazing people who shared their wisdom freely with me. I met doctors in other countries who listened, without charging me. I listened and learned.
Far, far away, there was light at the end of the tunnel.
To be continued…
I will write about it for a very long time, not every day but frequently, because now I can and who knows, perhaps it might help someone. I will write different posts, sharing what I learned and sharing the way I live my life now. It all started in the kitchen!
A very humbling journey.