Welcome To My New Life Fighting A Disease I've Never Heard Of Before....... Ankylosing Spondylitis

    How does a mother face the fact that she has unknowingly passed a chronic condition on to her child? I've been asking myself that for some time now. I have guilt because my children are my heart. I would do anything to protect my children. Yet I have no doubt that at least two of my children have spine problems just like me. It weighs on me daily. Let me share a bit about my sons.    My oldest son is 26 years old. He started complaining of back pain at a young age, approximately 7 or 8 years old. I wasn't diagnosed with Ankylosing Spondylitis at that time. I believed my spine issues were all scoliosis related. We went through years of taking him from one specialist to another. He would cry from the back pain. I remembered when I was young crying with my back pain also. It was heartbreaking. I feared he would need a back brace like I wore through my teenage years for scoliosis. However, he only had a slight curvature in his spine, not enough to need bracing. I did...

  I hope your Christmas this year was spent with those you love most. It certainly has been different from past Christmas for us. I'm sure many are experiencing "first" kinds of holidays this year.  Christmas 2020 was spent quarantining from extended family members. Due to my immune system being weakened from my Ankylosing Spondylitis medications, we felt safer by only celebrating with immediate family members. Looking back I wish we could've found a way to do a social distant celebration. Since December is very chilly in our area we didn't have the option of an outdoor event, but maybe we should've made a bigger effort.   As bad as 2020 covid cases were in our area, we hadn't seen the surge that the rest of our country was dealing with until 2021. Sadly, as 2021 proceeded we saw friends losing multiple family members. Our hospitals were over capacity and started turning people away. Friends and family members who work in the medical field were exhausted a...

   I've been neglecting to update everyone on my eBay journey. It has become one of the greatest joys of my life. That probably sounds crazy, but I receive so much pleasure running my own store.    If you've followed my blog you know I had to leave my prior job due to my Ankylosing Spondylitis. I was unable to work on a set schedule. With AS you can't make solid plans because some days you are in pain, experience overwhelming fatigue, or have unrelenting stiffness. Unfortunately, I didn't have enough work credits to qualify for Social Security Disability.     I decided to try opening an eBay store in early 2019. This seemed like the perfect job for me, I can work when I'm feeling well enough. I'm thrilled to say it's been over a year since my store, Bamboo Spine Gal, opened and it is going great. I love providing quality new & pre-owned items to consumers. I've had such great interactions with my customers. I'm very proud to say I've earned t...

  As I sit here at 4:35 a.m., I'm thinking of what my future will look like.   My back was hurting so much I couldn't stay in the bed any longer. Sometimes it feels like my spine is about to burst. I don't know if other Ankylosing Spondylitis warriors feel this same sensation. As sleepy as I was, I had to get up and move.    I have noticed my symptoms have been steadily increasing. I attribute some of this to the lack of my biologic medication. My insurance company denied the prior authorization of my injections; until my rheumatologist submits lab work showing proof that the medication is helping. Although I know the medicine was helping to a degree, the lab work shows high inflammatory markers. My last sedimentation rate was in the 70s and my CRP was also elevated.    What do I do now? It's unclear at this point. I've tried and failed on other medications. Is this how the rest of my life will be? Trying medicine after medicine with only slight impro...