9 Years Post-Op

November 04, 2018

Disclaimer: If this is your first time viewing my blog, welcome! I started this blog prior to my double jaw surgery to give information, support, and a sort of therapy for myself. If you're on the road to surgery and recovery I encourage you to take a look at this post - just as no two humans are alike, and no two jaw surgeries will be the same.

"Life is not easy for any of us. But what of that? We must have perseverance and above all confidence in ourselves. We must believe that we are gifted for something and that this thing must be attained." - Marie Curie

In the last year, I have learned so much more about my body and I am learning more about how to take care of it; self-care never being a forte of mine. Since being diagnosed with my auto-immune diseases (Ankylosing Spodolydis, Rheumatoid Arthritis, and Ulcerative Colitis), discovering more about my Marfan Syndrom, and starting treatment with TNF inhibitors I have been on a non-stop journey of trying to figure out what will work in my body. My previous post discussed starting a drug called "Simponi". This was an at home injection. And like the previous TNF inhibitors, did not stop my Ulcerative Colitis (UC) from being active (gut bleeding, pain, etc.). So, in February I started another infusion, Simponi Aria. For this infusion, I go to the infusion center every 8 weeks.

Infusion Arm- the only vein they can ever get a good "stick"

This drug worked really well until summer time. Then my UC started being active again only a few weeks post-infusion. I'm in the process of sorting out my treatment after having also been diagnosed with IBS, which until recently, I never gave much stock in hearing that diagnosis, thinking IBS must just be one of those annoying diagnosis and not one that impacted the quality of life. Well, I'm here to tell you that the cramping, spasms, bloating, etc. that comes with my IBS is real.

You may be thinking, "Okay, Mary what does this have to do with your jaw!". Well, it happens that my gut and joins have a symbiotic relationship. When my gut acts up, my joints are soon to follow. For me, this looks like painful knees, hips, scoliosis pain is more severe, hands cramp & swell, and my jaw is more tired, and can have swelling. When talking about my treatment with my doctors, we talk about it in a "whole body" way- and all of my doctors are in communication with each other about...everything.

Aside from taking big-time infusion drug(s) I've also started a medication to help me think more clearly. It's amazing what having all these issues with your body (chronic pain, doctors appointments, treatments, etc.) can do to someone. I also take a pill box full of vitamins and supplements. In the past, I've tried diets that claim to heal the gut and I've practiced cutting out foods that are supposed to cut down on swelling, etc. I haven't ever found relief from these diets. I'm sure they work for many people, I think that perhaps there's just too much going on in my body to really make it work.

I have a friend who's gifted me bath bombs with CBD oil- which I've discovered is an absolute dream (thanks Kriz!), I'm also committed to doing more yoga and meditation.

I think of myself as a pretty resilient person who isn't going to give up. Marie Curie's quote I chose at the start of my blog post best represents where I'm at in all of this. We all have something in life that is hard we need to have perseverance and confidence.

Through all of this, I am not alone. I have my family & friends to support me. I need to give an epic shout out to my rock, my best friend, the one, and only Sam:

Me & My Rock

Just a couple of goofballs.

Not only is here there for all the appointments he can be, but he is there to listen, to remind me to take my supplements, and to do my yoga, and take an extra long shower, to massage my shoulders when they are so stiff it's hard to turn my head, to do the cleaning I said I'd do, but couldn't because my hands were too stiff and painful or my mind was too foggy to think, to grab the frying pan from the lowest cupboard when it's hard to bend/squat down, to make me laugh even on my toughest days. He is there.

Chronic pain sufferers and those with "invisible diseases" like mine can all agree that having a support system is crucial to the maintaining, the healing, the surviving. Sam's been there since day one. Love you, bestie!

I also find so much joy in our daughter who's just turned 4!! She is the best snuggler on my tough days, and always makes me laugh with her jokes. We have a mutual love of art - and can spend hours painting together. Spending time with her in her imagination takes me away to a place with no pain...but there may be some lava or a monster we need to run from!