Ankylosing spondylitis

Another week….. but it’s getting better!

Well last week I talked about finding a book on autoimmune diseases (AD) in relation to work. Well I got the book and read it in 2 days. The book “Women, Work, and Autoimmune Disease Keep Working, Girlfriend!” by Roslind Joffe and Joan Friendlander was a nice enjoyable read. They talked about women having to work and the obstacles they face when an AD is present. They gave a lot of facts about AD and many stories are shared about women, work and AD. If you have AS which is an AD and you are a woman, you might find this book interesting.
As I mentioned in the last post my boss was pushing me to fill out paperwork that pretty much states I have a chronic disease, and I was trying oh so hard to stay away from that. I guess I really didn’t want to admit it, but the Family Medical Leave Act (FMLA) does protect me on those days when flareups occur and I can’t make it to work. So after reading the book I made up my mind to get the paperwork in. I hope I can keep working for another 10-15 years but at the rate this disease is progressing I’m not sure anymore. I have to focus on other things and not what might be right now.
This last week has not been my best. I have been to the chiropractor 3x and taking more of the oxycodone than I like. My chiro said maybe I should be thinking about taking the steroids more frequently than 3x a year and move it to 1x a quarter. The pain is still in my right hip and knee and favoring those is making my lower back hurt. Yesterday I did well taking oxy in the am and at lunch but recently I have discovered I am premenopausal and this is making my nights miserable with night sweats. Now I have to find something to take care of this, if life wasn’t hard enough now I have to worry about getting up early enough to take a shower before work! UGH
My stomach is acting normally again and I have increased my vitamin B intake and will have to admit the oxy gives me great energy, that is why I can’t take it at night. But back to the work thing. Admitting I have a chronic illness is disconcerting. Now with the paperwork in I have announced to the world that I may not be the person this company thought they were hiring, but…. because the paperwork is in they cannot get rid of me either! If your company has the FMLA and you have chronic disease consider yourself very fortunate, because some places (if employees less than 50) don’t have it. So reading the book I realized I am so fortunate that my disease was not so prevalent in my early life so I could finish college, get my kids out of the house and build my career. I may now have to look towards the future in a different way but my path is not nearly as hard as those who were stricken with this disease and any other AD in an earlier stage of their lives. My wish is that they find some cure soon and if they even begin to look for one will be a blessing!

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