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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
#fightingmybodydaily


Check out my eBay store:
www.ebay.com/str/bamboospinegal


 

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!

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 quickly. I photograph and list items on days I'm not hurting. On days I feel the ole AS monster is fighting me, I simply rest. This has turned into a happy way of life for me. I'll delve into a bit more detail about my business in an upcoming post.


Secondly. I want to tell you about how I'm using my Ebay store to 
raise Ankylosing Spondylitis awareness.....
While trying to decide on a name for my Ebay store, I asked my husband for ideas. He told me I should make a list of what is important to me. I began writing a list of what is important to me. Of course, my family tops that list but my health effects every aspect of what we do daily. I never know if I'll be able to drive, fix a family meal, get my son ready for school, etc. Then it dawned on me, my Ebay store had to help raise awareness for ankylosing spondylitis. I mean the whole reason I had to leave my last job was due to AS. I was opening my own e-store because I had to fight AS and help support my family. I began thinking of names for my store that would ring bells for other ankylosing spondylitis warriors. After a few possibilities, I settled on Bamboo Spine Gal. That to me spoke volumes, I have a spine that looks like bamboo. In sharing the name of my store with others it provides an opening to talk about AS. I can share facts, educate others, and maybe that will help our community.


Thirdly, I was so excited about raising awareness for AS....
I was thinking since my items are being shipped all over the world, why not include an awareness token. That's how I came to find light blue awareness key chains, pens, pencils, stickers, etc. I always include one of these tokens in each package I ship. Due to these items not being labeled for ankylosing spondylitis, I include a hand written thank you card, on which I write about AS awareness. I have had some really good feedback about these small gifts. I've also been contacted by other AS sufferers who thank me for spreading awareness.


Lastly, if you've read this far in my ramblings, I leave you with this thought,,,
I am not famous. I am a nobody. I live in a small town. I am a mom and wife.
I have the desire to see advancement in treatment for this unrelenting disease I fight daily. I challenge each of you that read this to do something to help raise awareness. It doesn't have to be big. Wear a AS awareness t-shirt, place a bumper sticker on your vehicle about AS, write a blog, the possibilities are only limited by our imaginations!


#fightingmybodydaily #ankylosingspondylitis
#bamboospinegal