Rachel Tew

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My name is Rachel  Tew. I have had ankylosing spondylitis for awhile now. I was diagnosed since March of 2013. I have had it a lot longer now that I know what I have. I had a neurosurgeon that diagnosed mines after I had a tumor removed. I seen people go in a lot for back issues so I ask him. Well he sent me for mri,and ct because my lower spine was swollen very bad. After my test results they called me into the office and referred me to a rheumy doctor. Who started me on sulfasalazine that day. I have special needs child which is now 13 for several years I thought it was part of lifting her so much. I blame fatigue on the tumor  etc. After they said that ankylosing was causing so many problems after years of eating aleve,advil.bc powder I knew which wasn’t healthy but with a kid like my oldest I never took time out for my health problems as much until it got so bad that I couldn’t hold it in no more. The tumor stuff I have had off and on since I was 14. I know it but these symptoms was not like  the tumor cholesteatoma which I have had 5x. This prevents enbrel etc for me. Sulfasalaizine is risky enough  but what can I do. I guess deal with the future when it happens. The problem I have is trying to vent to family and friends. They don’t understand much about this condition. My mama side had a lot of RA family conditions but when my grandma died when I was young I lost contact with them. I remember her having RA and my brother who she raised also but went somewhere else after she died. I am at my boyfriends family house now which he is a caregiver too his folks. I try to help as much as I can there are days when my back says this not happening today. He has help me with my daughter as much as he can when I tell I  need it. I am not the type to ask for help but this stuff is teaching me everyday. My medications are  sulfasalazine,methocarbonal,tramadol,3aleve 3x a day,if it was for my adhd meds the fatigue would be worse.I still get to move better then I did but I have my days. I am 31 parent of 3 kids one special needs. I just want to be able be a mom to my children and watch them grow up. tired pain,people don’t,tired of this being not out so those behind us can get treated early.

My email is butterflybody@yahoo.com

Georgia, United States of America

9 Responses to “Rachel Tew”

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

    • I am so sorry for such not replying so long on here as I talk to you and so many of the other members on fb. i cant thank you enough for the support group you have created it has been such a gift in my life. For the first time in my life i feel I have people i can open up to ,I can trust and have never met anyone on here but can tell that most everyone i have talk to can name a bad apple that I have met. I dont know where i be with out our a.s family support, not only for a.s but my struggles with a special needs child and let me tell you it effects a.s more ways then more then pain of lifting 81lbs can hurt ,the stress of constant in and out of hospitals never know what each day will bring. I always kept so much of my struggles to myself and i think that what made everything jump on me at one time and not taken care me like i should and should have seen a doctor about my pain,fatigue,and not feeling well for so many years just thought i was being a whimp and i needed to suck it up and get deal with it, little did i know eating nsaids,otc pain meds would land me in the hospital ,besides a.s, ra,and tumid lupus attacking my kidneys. Cookie Hopper you are amazing woman, I look up to you so much. I love you as mom.

  2. you can vent to me anytime. I am face #377 and I am on FB. I am a support group leader for the Spondylitis Association of America.
    I would be happy to listen and support you in any way I can.
    Thank you for your kind loving heart in spite of A.S. and the pain.

    • As we have met on Facebook and you have supported me from day one , I am so glad to have u as a someone to listen to me on bad days ,and good days, thanks for being there for me. I am sorry it has taken me so long to reply on here as i talk to most of members on fb but i will start checking here more often.

  3. Cookie thanks for all ur hard work and lettin me cut up with the group .

  4. You’re such a pretty lady. Thank you for sharing your story. I still haven’t done mine yet :\ You don’t look like a mom of three. Despite the hardship at least u got it going on lol.
    I’m sorry for all the things you must endure, especially having 3 kids you must want to play with them and help them sometimes so badly and just can’t. Hopefully they will grow up appreciating those who suffer with chronic pain and be all the better inside their hearts for it.
    Nice meeting you and hearing your story!
    Taylor Johnson Ness

    • Taylor well thank you, nice to meet you. I sorry it has taken me so long to reply to you on here as I talk to most of the members on fb but i will start coming here more often to know others msg me. I stay busy it keeps my mind off what all this condition can depress a person making pain and fatigue worse. I learned hot soaks in epsom salt is a must the lavender one helps me to sleep at night after a soak with medications. I learned to start the day as my doctor informed me its important to take hot showers upon waking up take meds before shower then do breathing exercises to keep them lungs moving , also apply arica gel to all over my body and taken the tablets help so much , besides the other medications i take . i learn to stay busy and take breaks my doctor told me learn to pace my self like every hour after doing stuff cleaning,cooking, and such take a 15min break then begin again if the next day i feel sore ,and hurt more add subtract 15 min from the hour until i find my balance i found this to be very helpful . I always been active, as i also have a child with special needs who is 13yrs old and 81lbs and lifting her over the 13yrs as she grew kept my my back moving ,I have fusions, and ra as well besides a.s ,but it has built up my muscles in my stomach, and back to keep me moving my doctor said it saved me for the most part from a.s and ra destruction but now my back is unstable and he dont want me lifting her, my hubby helps me with that for most part but i still do it .Plus running after two healthy girls 7yrs old and 10yrs old keeps me going. I find if i sit, or sleep past 7hours stiffness is much less as if i give in to it, i learned to keep my vitamin d level at normal range as this makes the disease hurt me much more feel free to email me and add me to facebook Rachel Tew moultrie ,ga. it is nice to meet you again. I have a bunch of tips .

  5. Hi Rachel. I also suffer from AS. I have had it since a motorcycle accident 11 years ago. I’m 46 and work for myself. I’m now finding the condition harder to deal with but am determined not to let it rule my life. I have two young boys that keep me active so I push myself through the pain to keep up with them. Unfortunately this isn’t really a condition you can discuss with anyone as not many people understand the condition or its effects and due to not really being a one to moan I tend to keep it to myself. So really that’s why I thought I’d ask about your experience of the condition and living with it. Thanks for your story. It shows other sufferers it’s ok to talk about it.

  6. Brett Tucker, it is so nice to meet you. I am so sorry about your accident. I do understand the hardship of pushing through the pain. I find proper info to post on facebook for family and friends can read i am not making the pain and how i feel up . Feel free to add me I have a bunch of research to share in proof ankylosing is real look me up and i will add you. i sorry been so long to get back add u , I should visit here more often.

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