Living with Rheumatoid Arthritis is not something someone in their thirties usually thinks about. An old person's disease; something we see in our beloved Grannies with their curled up hands that so diligently still cook our favorite meals.
This all changed for me in 2009 at the age of 38. Just after starting a new job and in the company of clients and my new boss, I suffered a seizure. I was shocked and embarrassed. My new boss accused me of not disclosing that I was epileptic and ended my contract. After being hospitalized and undergoing a series of tests I was put on epileptic drugs and sent home.
The epileptic drugs were my first experience with medicines that make you feel a whole lot worse while you are trying to get well. After two weeks I through the epilepsy medication away as I could not cope with the terrible side effects. I was totally spaced out, had double vision most of the time and spent most of my time sleep. How was I expected to find a new job to support myself and my two kids if I could not even get out of bed?
Then the new symptoms started, terrible pins and needles in my hands and feet, excruciating pain in my feet when walking and an overwhelming sense of tiredness. I was back at the Neurologist and hospitalized for more tests. I was pricked and prodded, had blood work done, x-rays, scans and even an Aids test. Finally, with all other possibilities rule out, the neurologist referred me to a Rheumatologist. After more testing I was finally given a diagnosis, Rheumatoid Arthritis. What a relief, finally something I could work with!
It has now been 6 months since the diagnosis. I am still not working and the pain and tiredness have not abated. I have been hospitalized a total of four times in the last year. I now take a chemotherapy drug once a week over and above the other rheumatoid medication. I have blisters on my hands and in my mouth from the chemotherapy and my weight has sky rocketed from the cortisone.
Rheumatoid is a life-long chronic disease and there is no one drug combination that works for everyone. It is a process of trial and error to find the combination that works for you. This can take up to a year or more to perfect. You can never stop taking the medication and there is no guarantee you will ever be pain-free.
So what do you do after the diagnosis?
You change your life accordingly. You do not dwell on the things you can not do (as there are many) and you accept the fact that you are going to need an afternoon nap more days than not. You find new things to do with your children like board games. You work at home or part-time as having a full-time job is just not possible. When you accept your limitations with no guilt you can start living your life with this disease.