854 Letisha

In December 2015 my Dr suspected that I might have kidney stones, I was admitted to hospital and with after the CT scan, it came out that I have Sacroiliitis. I was in excruciating pain and was unable to walk. This lasted for two weeks and I consulted another Dr as mine was on leave. He then started with strong pain meds. My Christmas was spent in bed as I was not able to walk.
A few months later, the pain returned again with a vengeance, I was admitted and had a Spine surgeon examining and went for an MRI. The results came back and it confirmed that I have Sacroiliitis.
Infiltration was done into the joint and it did not work. My surgeon then did facet blocks and deeper infiltration. By 2017 things were getting worse. My Physiotherapist then started to notice a pattern and discussed it with my GP. He phoned me and requested countless blood tests and X-rays.
At that point, I was in and out of hospital every 3 months. The worse part for me is when I get side-effects from Prednisone.
My spine Surgeon said he suspects Spondylitis. I never took big notice of that, he referred me to a Rheumatologist. What a waste of time. He looked at all my test results done thus far and told me I have Fibromyalgia. I left his surgery without any extra tests or even a script.
That’s when I started searching for the best Rheumatologist in my surrounding area and found one 2 hours drive from home (we live in a rural area). This Dr started going through all my tests. She admitted me and did more tests. I went to theatre two days in a row to get infiltration directly into the affected area. She changed all my meds and I started to feel better. But the back pain kept on appearing.
I go to physio twice a week and have progressed so much that I was able to start rehab.
For rehab, I go for Hydrotherapy where the Dr floats me in the pool and also use “traction” methods. After two and a half years I a managed to keep my muscle tone. So she is increasing the intensity level slowly as per my Rheumatologists’ instructions. Some of my tests came back, showing that I could start with RA flare-ups very soon. So I am 36 and already have an idea how painful it will be for me to grow old. So for now, I am riding this wave and trusting all my Specialist, Doctors and Therapists.
My husband supports me and my boys are the best. They are so gifted and make me proud every day of my life.
I was in hospital two weekends back and contacted my Rheumatologist. She prescribed stronger meds, but I can still feel the spasms. So I am being admitted to the hospital, again, to go to the theatre this coming week.
This pain is real! It’s not made up, it’s not in your head. It’s not that God is punishing me, rather I am protected more.
Sometimes I wish there was a chemo or operation to get rid of my body attacking itself.
After two and a half years of constant pain, I am accepting this decease and are grateful that there is at least treatment. Although its strong meds, it is giving my life back, little by little.
People around me do not understand and my parents went to their GP for explanations.
The only person suffering the most is my husband. He wants to be there all day and every day, but due to his work commitments, he is not always able. I am fine, but he keeps quiet about it.
This is my journey thus far and I am still climbing the mountain. I will and shall get my life back.
For now, I am battling to sleep even though I take sleeping tablets and calming meds etc. The pain still wakes me up.

This is my boring story, but I hope you get some inspiration and can set goals. Mine is to get my core strong and avoid fusing of my spine in a curve. I’d rather be straight than stuck in a bent position.
There is hope for us all. If you are hesitant, get another opinion. I am so lucky that despite the distance, all my Drs and Therapists work together. This is the biggest blessing in my life.

Stay strong and find strength from God our Savior, He has become my rock and salvation, more than what it used to be.

AS Greetings
Letisha Schutte
South Africa

This is me and I have AS!!!!

One Response to “Letisha”

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

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