A.S. Face 0429: Rachel Baker

I am a 36yr single parent with 2 fab kiddies 13 and 9. I have recently been diagnosed with AS then it questioned and now rediagnosed ! i have had lots of problems getting diagnosed as in i have been suffering for 8+ years with all the symptoms for AS and a strong family history my father and sister are both sufferers also. Despite telling Drs and specialists on numerous occasion of the strong family link and the fact that my age etc was the prime time for AS to show up i was ignored, sent to pain clinics for painful steroidal injections which worked for 6-8 months initiall but now last 4 weeks if i am lucky, and was told that i have mechanical back pain but no cause was found etc etc. I am now on regular medication but the flare ups are becoming more and more often and it is those that i struggle with more than anything. My daughter who is 13 is a great help when i need her but trying to keep down a job and run a home and look after my children is a struggle at times, and i think that if i was not working i would get more money through benefits from the government but i couldn’t do that, i need to stay active to keep my sanity. Although saying that the fatigue i suffer from makes everything so much harder to do. I am hoping to be started on a new treatment soon as i have an appointment to see if i am eligible for it soon. Until then i have resigned myself to the fact my lovely high heels are not going to be worn ever again and that the near on continual pain is something i just have to live with. I am so pleased i found the fb page i am chatting to a lovely man who is giving me lots of advice.
many thanks for reading this
Rachel baker
Essex United Kingdom

4 Responses to “A.S. Face 0429: Rachel Baker”

  1. Thanks for saying a bit about yourself. I’m now 48 and was first diagnosed at 33. I understand a lot of what you’re saying here x

  2. I understand the need to work but when I found myself in the position that I had to quit working I discovered a whole new life. Without the constant pressure of pulling out the last bit of strength to get up and to work or just trying to make it through the day, I discovered that I was able to be even more productive then I ever had been before. Sometimes your body just needs a rest. You can’t give up I understand but don’t forget that it’s okay to be good to yourself. I also understand the frustration about a diagnoses. The doctors all thought that I just wanted narcotics. Hang in there someone will listen and then it’s like the sunshine came out from behind the clouds.

  3. Hi, I also have A/S & have just started on Humira & it seems too be working {Touch Wood} I really hope the new treatment you may go on works for you. I also understand completely what your going through. I miss my heels too 😦

  4. Dear Rachel,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

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