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 top-rated seller performance level. I pride myself on fast shipping and even sell and ship globally. Recently I shipped to France, Germany, & Canada. I'm blessed, my husband and son help me on days I need assistance. They drive my shipments to the post office if I don't feel well enough to leave the house. Also, my dear husband has become quite the treasure finder. As of today, I have over 250 items listed in my store and it is growing all the time. 

   I decided when I opened my store I wanted to use it as a platform to raise awareness for AS. I picked my store name to raise the question, "What is Bamboo Spine?" I always include a handwritten note of thanks with "Ankylosing Spondylitis Awareness" and a light blue awareness sticker in every package. I hope this will help inspire people to research our disease. Maybe it could help someone find their diagnosis. If it helps just one person it would all be worth it. I remember my frustrating years of searching for an answer to what was going on with my body.

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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. It scares me. I think about the pain and stiffness I have at the age of 48 years old, what will 68 look like? Will I be able to walk? Will I be so frozen stiff I won't be able to care for myself? I already have trouble bending to pick things up from the floor. Last night I couldn't bend down far enough to unplug my phone charger. I had to ask my son to do it for me. I know I can make modifications in my home to assist me but there are days I long to be a "normal" person.

   I apologize if this post is too gloomy but I felt the need to let these feelings show. Perhaps you're facing the same future as me if so I hope it comforts you to know there are people in it with you. You are not alone. We all have days like these. There will always be a brighter day, it just hard to see the sunshine through the rain.

  Keep fighting my friend!

Gentle hugs,
Bamboo Spine Gal

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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 growth. People can live with these and never have them removed. The only reason for removal is if the tori is interfering with mouth function or to accommodate dentures. 

Yes, you guessed it, I need dentures. I've always had a severe overbite. My parents couldn't afford orthodontic braces when I was a child. My bite is so bad, my lower teeth are cutting the roots of my upper teeth. I have sores and scar tissue behind my front teeth from 40+ years of my lower teeth cutting into the gums as I chew. My dentist kept telling me to hang onto my natural teeth as long as I could. Great advice from an individual who doesn't live with the fear of eating. If you haven't walked in someone's shoes you don't truly understand their point of view. In a perfect world, I wouldn't have this issue, but here we are, now what. 

My dentist will not extract my teeth or fit me a denture until I have an oral surgeon remove my torus palatinus. After a couple years, that's right YEARS!, of trying to explain myself to my dentist, he very flippantly agreed to refer me to an oral surgeon. He told me the surgeon could do my extractions while I was under anesthesia for the tori removal. It sounds like I'm finally getting somewhere. 

*Appointment set up - check
*Referral printed        - check
*Xrays in hand           - check
*Double check that oral surgeon is in-network with my dental ins - check
*Husband will be able to use paid days off to help with my recovery -check
*Fill out 8 pages of new patient forms - check

I left for my appointment this morning very hopeful. I was filled with relief to finally be moving toward pain-free eating. Even after waiting for almost 2 hours in the waiting room, I was happy as could be. When they finally called me back, they wanted to do more xrays. The ones my dentist sent were just tiny bitewings. I'm thinking, I have no problem paying for more xrays, let's get the surgery scheduled. The very kind dental assistant escorted me to a room after taking the new xray. I sat another 30 or so minutes waiting for the surgeon to come in my room. I'm still cheerful, just sitting, staring at a wall.

Finally, the moment comes, there's a knock and in walks the surgeon. He proceeds to tilt my head back and look in my mouth. He says the surgery to remove a tori is very complicated and serious. There can be bleeding that fills your lungs. He doesn't do that type of extensive work. That type of surgery has to be done in an operating room with anesthesia. He's happy to send a copy of my new xray with me to whomever I can find that will perform my surgery. In parting, he tells me his office will bill my insurance for today's visit.

Wait, what just happened??? Now I'm back to the beginning again. Will I ever find an oral surgeon that can and will perform my surgery? I'm saddened and frustrated. Why won't they extract my teeth and place a denture over my tori? The dentist said the denture wouldn't suction well in the roof of my mouth with the tori. I don't care if it doesn't suction, I'll use denture adhesive. Please, someone, give me a reason this isn't a viable option? 

I was told in an Ankylosing Spondylitis support group, I should insist on having the denture placed without the tori removed. My dentist reportedly had never heard of this being done. The members of the support group said if I have the tori removed, it'll be likened to our spine's fusion. The immune response will make the roof of my mouth replace the bony growth.

I'm so confused about what step to take next. Please, if any of my readers have any experience with torus palatinus, comment, any advice is sincerely appreciated.

Gentle hugs to all my AS warrior friends!