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

Where Is My Specialty Pharmacy? *A Small Rant*

  Here we are halfway through February already. As I get older it seems the years pass quicker.

  Unfortunately, this new year has not began well. I experienced a change in my health insurance January 1, 2019. This normally might not be problematic, but if you are on biologic medications it can be a nightmare. With my prior insurance company, I was only allowed to receive 1 prefilled Cosentyx per month. Therefore, when the new year with the new insurance began I had no Cosentyx.

  First thing I did was try calling my new insurance company, epic fail. I was on hold for 48 minutes waiting for my call to be answered. When a customer representative finally answered, she was clueless. I asked her who they used to fill specialty medications for their members. She had never even heard of a "specialty" medication. I explained it was a medication that has to be shipped to me because regular pharmacies do not carry it. She seemed perplexed. Finally after several minutes, she told me I had called the wrong number. She happily gave me a number to call to get the service I needed. I wasn't happy about needing to call again since I had been on hold for so long. I thought perhaps since it was a number to call about a biologic specialty medication it wouldn't be as busy as their main line. I began keying in the phone number the representative had given me. I thought this number seems familiar, I looked at the previous number I had called. I was shocked! I couldn't believe my eyes. She had gave me the exact same number I dialed to reach her. I'm not sure if she simply wanted me to ask one of her coworkers, but didn't want them to know she was clueless or what. Perhaps, she was new and wasn't familiar with the companies departments. You'd think they'd train new employees better or have a mentor they could go to with questions.

  In the end, I hung up the phone because it put me on hold again. I didn't have another 48 minutes to be on hold. I called my doctor's office and asked if her biologic coordinator could get my Cosentyx shipment set up for me. Unfortunately, the coordinator called me the next day and had the same experience I had. She stayed on hold an hour and the rep she spoke with did not know what company filled their specialty pharmacy orders. Needless to say, the coordinator was not pleased. She said all she could figure out was to send in a prescription and hope they forwarded it to the correct location.

  I still have not received my Cosentyx. I haven't had any since December 2018. Six weeks past my last scheduled injection date. My pain and stiffness levels are soaring. Will I ever get this straightened out? Hopefully eventually.

  Does our insurance carriers not care about us patients? It certainly seems they don't. Do they not realize the damage ankylosing spondylitis can cause our bodies? If it was one of their loved ones suffering from this unrelenting disease, would they allow an untrained customer representative to brush off the ordering of their medication? No, they wouldn't! This countries insurance system is unfair, uncaring, and money grubbing.

   I apologize my rant. I hope each of you are receiving the treatment you need and the service you deserve. Stay strong AS warrior.