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Featured Post - My Intro To AS

Is Ankylosing Spondylitis Even Real Words

    Finally after years of joint aches, inflammation, fatigue, and chronic pain I had an answer. But what the heck did they say I have? I sit silently taking it all in, trying to focus on what I'm being told. To be honest, I don't think I heard a fourth of what the NP told me after that strange sounding name of the disease. Here I am with an answer, THE answer. Is it wrong to feel relief? Happiness? How can I be happy, I just learned I have some weird sounding disease. Yet the flood of relief is overwhelming.      I think I may be taking this news oddly compared to other sufferers. Sitting in that little exam room all by myself, I have learned the pain is legitimate. I have suffered this so long without answers at some point I began to wonder is it all in my head. Is what I'm feeling real? I certainly know I hurt but could my mind be controlling all of this pain. I have told the long list of doctors what I experience. Some of them seem to listen and have a genuine concer
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Life Has Changed

 My life completely changed in June. I became a grandmother. Wow, that sounds so old! I’ve decided I will be called “Mimi”. My grandson is the light of my life. I never realized how precious grandchildren would feel. My only concern is my body and ankylosing spondylitis. I have the joyous privilege of babysitting three days a week while my daughter and son-in-law work. As my grandson has grown, he’s now 6 months old and 16.4lbs, my pain has increased. By the time my daughter arrives to pick him up, I’m hurting. This hurts my soul because I want to be that grandma (Mimi) that can do everything with my grandchild. I have never felt so old and broken down as when I have to ask my husband to pick up my grandson because my back and shoulders won’t let me do it. I keep thinking I’ll build up and it won’t hurt. I will not give up! Ankylosing Spondylitis, the thief of my joy 😣
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A Mother Feels Her Children's Pain

    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 didn't und
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Christmas Without Her 2021

  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
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Using My Ebay Store To Raise AS Awareness

   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
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My Fear of The Future

  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 improvements.
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Dental Surgery Disappointment

Today has been a disappointing day. I had an appointment with an oral surgeon this morning. It didn't go as expected. I guess I should start at the beginning. Several years ago, the roof of my mouth would wake me up itching. I know that sounds weird, but what about our bodies isn't weird? Anyway, I would have to rub the roof of my mouth with my tongue to relieve the itching. I assumed it was an allergy issue. I tried monitoring what I ate to see if there was a correlation, but it had no rhyme or reason. This intense itching in the roof of my mouth continued off and on for a year or two.  One day, while my family doctor was checking my tonsils because of a sore throat, he discovered a bony growth. My physician said he had seen these bony growths before, but he couldn't recall what they were called. Of course, I was curious as to what was growing in the roof of my mouth. Finally, thanks to Google, I discovered it's called torus  palatinus. Apparently, it is a benign g
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Exciting News.... Long Overdo Update

WOW! So much has happened since I last posted. I apologize for disappearing for such a long time. Life happens and I guess we all let things fall by the wayside, but I promise to try to update more regularly. First, I want to let everyone know my most exciting news..... I talked about opening an Ebay store in some of my last posts. I'm happy to tell you I've been selling on Ebay since March 2019. I'm not at a point where I can say it's helping our finances, but that's because I've been reinvesting my earnings into the business itself. It takes a lot of time and effort, much more than I realized. However, I'm enjoying the journey. I'm constantly learning about brands and what sells best on the Ebay platform. Yes, I have made many mistakes and bought things I should've left behind. I'm still a newbie and expect it'll always be a challenge to keep up with the latest trends and sell thru rates. I'm not pushing myself to expand too
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