A.S. Face 0887: Beth Bevers Low
So here’s how my story goes… once upon a time there was a fun loving, independent, wife, mother and grandmother that was at work FAR MORE than she was with her family. She had been a nurse (ER Supervisor for 15 years) – left that career due to having to work wierd hours, always being on call and mostly because she didn’t play well in the political games of treating people of influence rather than treating according to acuity/severity of disorder. In other words, I wouldn’t move an acute heart attack victim out of the room to put in the editor of our little newspaper who had food poisioning. – from that point on, I was on the “hit list” and finially just left. So then after a 2 year break in which my husband and I were building our house, I took a little cashier job with a “home building” store, thinking I would work 3 days a week, get the employee discount and finish our house. Well I fell in love with the business and quickly made my way up to Operations Manager. This job required a LOT of walking, climbing, loading etc. My ankles were KILLING me, transferring pain up to my knees and my upper back started giving me fits. Saw a Dr a couple of times, who reminded me of my age and that I was overweight and gave me some antiinflammatory meds. When it got to the point where I could not walk, I saw them again. NURSES are the WORST patients!!!! We either have EVERYTHING or we dismiss every symptom. I was the latter. My doc diagnosed me as Fibromyalgia and made an appointment for a Rheumatologist. – in 7 months. When I saw her, she said I had been given all the correct meds and moved up the medication line correctly – definitely had Fibro but thought it was something more. She called me later and told me I had tested positive for AS. I SWORE I had never heard of it but in looking back through my textbooks, I had indeed covered the disease (listed under rare disorders) and apparently learned it for the test and the knowledge seeped out my ear when I slept. In researching my files, my Rheumy said I had been showing signs/symptoms for 10 years (little dr visits) before my diagnosis! We continued down the medication road and after failing Enbrel, she wanted me to start Rhemicade. On my FIRST infusion – it was decided we needed a med port. So that was 2 years ago.
I left my job 😦 last July – They had been SO GOOD to me, allowing me to use my cane as long as I could and then letting me use my scooter – I just got to the point where I could not last the 12-14 hour days and uphold the requirements of the job. I felt I was not pulling my weight – they said I was – but you know..
.In Januany I had bilateral carpal tunnel done – so that has helped me to be able to type again.
My mother passed away in May – we are STILL sorting that out!
So … now I am a professional at home woman – going to the doctors and infusions. I never watched much TV but I can now tell you about most shows – I quote commercials and I have turned quite boring to talk to. lol
Mornings are my worst! I use a walker in the mornings – a cane most other times, and a scooter once a month when we go shopping..
So all in all – I’m doing okay. Get lots of help from my husband and my grandkids. I am making it and still in the search for the right meds. Like we ALL are, I’m sure!
That’s my story. How about you?