“In the midst of tribulation, Stand by me;
In the midst of tribulation, Stand by me;
When the hosts of hell assail,
And my strength begins to fail,
Thou who never lost a battle, Stand by me.”
—Charles Albert Tindley
Hi Friends!
I’ll start with a little follow up on my last post and then get into the main reason of this update...
I got my covid test done on the 5th and it was negative for the 7th or 8th time now. I got my J tube changed on December 8th. It was an extremely painful procedure seeing as how my J tube doesn’t even like the slightest touch. The tech was quite ticked at the surgeon who saw me while I was in the hospital and messed around with my J tube. He wiggled it like crazy, yanked on it, and took the balloon down. Turns out he only put a tiny bit of fluid back in the balloon, causing the actual balloon to be in the stoma instead of in my intestines where it’s supposed to be.....another very legit physical reason for pain. Anyhow, that night my tube dressing was saturated in the bright green drainage that has been accompanying the infections I’ve been getting at that tube site. Thankfully, that seems to have subsided without having to take yet another round of big time IV antibiotics...hopefully it stays that way!!
I ended up going to the orthopedic about my right shoulder that has been bothering me since my oral surgery. I’m very thankful the doctor doesn’t think it’s anything serious and seemed confident that it’s bursitis from positioning during the procedure. They usually use stretching, anti-inflammatory drugs, ice, and therapeutic patches and, if that doesn’t work, a steroid shot. Thanks to MCAS, stretching and ice are my options. He said normally it’s better within 4-6 weeks but with my limited resources, for me it’ll probably be more like 6-8 weeks.
The procedure pain from the oral surgery is nearly gone. My jaw is still a little angry and the extraction sites of the wisdom teeth are still sore but I would say it is pretty much healed up.
Ezra was a stinker the other day and got into the stack of Christmas presents that hadn’t made it up onto the mantle yet...he managed to steal a present for Bella and proceeded to open it before getting caught! He was very proud of himself to say the least! LOL
Now for the bigger news...
I called my dentist in Chapel Hill to inform her of the continued tooth pain. She decided to schedule me to get my stitches removed and she could take a look to see if she could locate the culprit causing all this pain. I had that appointment at UNC yesterday and the results are fairly devastating and left me with quite the decision to make. She can’t find the reason for the random tooth pain on the top left and she tried every test in the book only to be baffled. She said that pain is a mystery and the only things she can think of that could be causing it would be TMJ/jaw issues (something that comes along with my EDS) or unexplained facial pain. However, it was very clear what is causing the severe sensitivity on the bottom teeth. Whatever is causing my dental issues in the first place (acid reflux, dry mouth, malnutrition, MCAS) has already eaten away and destroyed the work she did a mere week and a half ago. The materials she used on those teeth are gone, the demineralization has worsened, and it is now creating cavities...all within 10 days! It’s unreal yet (unfortunately) very real all at the same time. So the verdict was that those bottom front 6 teeth are going to have to be pulled. She then addressed the fact that the rest of the top teeth are so demineralized, stripped of enamel, and could very possibly need taken out very soon. It’s inevitable I will lose all my teeth due to the source being so chronic with no remedy. She mentioned the possibility of just biting the bullet, pulling them all, and going straight to dentures and that way I don’t have to keep dealing with this. There are a few options for me to choose from...removing the bottom front 6 teeth, removing those plus the other 7 top teeth, or removing all of my 18 teeth. I’m really leaning towards the midway option of removing the 13 worst ones and leaving the 5 back bottom teeth. Those 5 are in fair shape and it’s possible I could have some time before losing those. I just don’t know how I would handle losing all of them at once both physically and emotionally. This is a huge, life altering, irreversible decision that you never expect to be forced to make at 26 years old. It makes it harder that I haven’t been careless with my teeth - I even went through nearly 3 years of braces....all to be destroyed by a heartless disease. I’m grateful that I’ve healed better than I thought I would from an emotional standpoint with losing my top front 6 teeth. It helps that the pain of those teeth left with them. I know my sweet Jesus has a plan for this and, even amidst the devastation I have peace in knowing He’ll stay with me throughout this entire heart wrenching journey and I’ll have His strength to deal with my future. SO, I have a pre procedure covid test scheduled for January 2nd at 11:15am and my OR dental procedure is scheduled for January 5th sometime noon or after depending on the previous case that day. And there’ll be a pre-op appointment squeezed in between those two appointments, but that probably won’t get on the calendar until Monday at the earliest.
I thought I’d share the attached song for a little humor pick me up...I jokingly texted it to my sister and told her I thought I needed to sing it to myself to which she replied “Maybe if you sang it to your teeth, you could convince them to stay.” It provided a much needed laugh for me and I hope y’all enjoy it! ;)
Taking Life One Decision at a Time...
Allison
