I feel lost in every sense of the word since my official diagnosis at the beginning of this week. I feel the worst betrayal of my life...the betrayal of ones body. A body that I can no longer count on for anything other than pain.
Without a diagnosis I could pretend that since I woke up one day like this that I could magically wake up one day and it would be gone. That I would have my life back. It took 8 months to figure out what was wrong. A short time given how many others I have heard about since I started this nightmare journey into auto-immune diseases. I had always believed that I could deal with any diagnosis that it was the fear of the unknown that was getting me down. Knowing that whatever it was would get better once we had a diagnosis. Of course with a diagnosis I would begin treatment and I would magically be better.
Rhuematoid Arthritis is an incurable auto-immune disease and it is life changing. So many people hear the word arthritis and assume that you are making mountains out of mole hills when it comes to your pain and limitations imposed by this dreadful disease. After all it is just arthritis! Whom ever named this disease got it wrong. Not only are people in general misinformed but so are a number of healthcare professionals. Auto-Immune Rheumatoid Disease seems to be a more apt name for the disease and it at the very least takes arthritis out of the equation and has people ask what it is vs. assuming they know what it is since they have a touch of arthritis in their knee.
This "arthtitis" has decreased my life expectancy by 10-15 years. I have rheumatoid nodules on my lung and it can involve other organs as well. I am at greater risk of heart disease, blood cancers as well as having other organ involvement as well. The medications are nasty. They treat this "arthritis" with chemotherapy drugs and anti-malarial drugs, I then take an additional 3 medications to counter act the side effects of these two drugs. The side effects of the medications outweigh the damage that RA will cause my body. That alone makes me shake my head. Leaving this disease untreated would be worse than the damage I am doing by taking chemotherapy and anti-malarial drugs.
I am unlucky enough to have RA in EVERY joint in my body...parts of my body I didn't even know were joints or had never thought of that way before. When my jaw is inflamed it changes what foods I can eat as I cannot chew. When my hands are bad just about everything changes. I can't get up by myself, I can't dress myself: anything with buttons is out of the question, I can't shower myself, brush my own hair, pick things up, do housework, hold items in my hands, write, type, turn door handles, use my cane (which is needed to keep me upright since my knees and ankles give out whenever they desire), drive and most importantly do things with my children. Heck I can't even hold a book to read.
I have learned that my ribs which hurt with every breath are considered a joint of sorts where they are attached to the sternum. We have more joints in our feet than you realize and every single one of them hurts. Some days it is impossible to stand let alone walk. I have given up walking any distance more than 10 minutes. Think about all of the things that that alone impacts.Whenever I venture out of the house which is rarely these days I have to consider if I have what it is going to take. I know that after 10 minutes of walking around I will end up dragging myself feeling more dead than alive. At the end of it all I still have to get myself and possibly my kids if they are with me home safely.
Last year at this time I was up to walking 5-10km daily and swimming 1-3 km daily. I was the healthiest I have been in my life. I was alive and Loving Life!! I can no longer do either of those things. I can't do simple things, things I have done all of my life. Damage is already done and is irreversible. The only hope I have is that the medications will work and slow down the disease. It will take approx 12 weeks to know if these medications are going to work for me.
Coming to terms with my new limitations is going to take some time. I have to resign myself to the fact that each and every day I will be riddled with pain. I have had days where I know that if not for my amazing family and friends I would not choose to be here. It is hard when each and everyday it takes a few hours to work the kinks out, take stock and determine if there are more nodules, more swelling, more damage and if there are more things that I cannot do today. Each time there is something added to the can no longer do list I cry...yet another loss when will it end? Will I be left able to do anything for myself?
Before January I used to be the person who always saw the cup as half full. I could see the bright side of anything and everything. Today I remain lost. Not knowing what to do with myself, where my life is headed and how I am supposed to approach the future with a smile and confidence. I had a wonderful conversation with my brother who reminded me that I am much more than my physical being. That I am loved for who I am and even if this disease takes my body it can only take who I am if I let it. That in itself is food for thought. I will come out the other side of this capable, confident and positive in myself, my abilities and what I have to offer the world. All things take time and I need to give myself permission to go through the process of getting there without being too hard on myself.
© 2011 Rhonda