I have lived my entire life taking being healthy for granted.
I've only been seeing a doctor for the last 3 years, and that's been mostly for well visits and when they ask if I have concerns, I'm always baffled by the question and my answer is no. I'm just there because I think I'm supposed to go get checkups. It's part of adulting right?
But, last August my life got turned upside down and I've been reeling trying to find my new normal.
I haven't said anything to the world at large, and wasn't going to, until I made a new facebook friend recently. She's in my online support group and lives in Denver. She was diagnosed recently and found the support group and facebook friend requested people and I accepted. I normally wouldn't accept a facebook friend like that, I am very choosy because I share so much online, but I did. As her friend I could see that she was sharing her diagnosis with everyone she knew and sharing information to educate people on her disease. It was fascinating and she received very supportive responses. Why wasn't I doing that?
I realized that it was because I was still in a place where I was hoping it wasn't true. Because it's a diagnosis with no test to confirm and because it could also be several other, less forever type, things, I did not accept it. I still have secret hopes that everyone is wrong and it all turns out to be something insanely simple and fixable. (Guess they're not so secret hopes now) Even awful, but fixable would be preferable. I found myself praying that they'd find a tumor or growth or something on any of the hundred blood tests, ct scans, mri's etc... Now that is a weird headspace to find yourself in. It's not healthy. I think owning the diagnosis and moving forward is probably the healthier option. I'm glad I had someone to show me that.
In the process of all this I shut down. I kept bailing on plans. I only saw people on good days so no one knew I had bad days. I stopped exercising for fear it would trigger something. I tried soooo many different meds and diets and treatments to see if they would help and they all had weird side effects that weren't just for me to deal with, my whole family was stuck with the monster I had become. Unreliable, unpredictable, lazy, whiny. Let me tell you, I wasn't anyone's ray of sunshine.
Which brings me to now and to what I have to say. I have been diagnosed with Atypical Trigeminal Neuralgia. Typing that felt like the announcement in AA that each person gives before they speak. Anyways, moving on. This is a chronic facial pain condition, and mine is primarily on my left side. All the tests have come back clear which means I don't have anything scarier than this, but also means that doctors don't know what is causing this. It's a disease usually reserved for older people and there is no cure. There are anti-seizure medication options that all come with significant side effects and that do not work long term. There are several brain surgery options as well, but they are usually reserved for visible nerve compressions, which I do not have. Sooo, lots of great options right? I have come to understand what it's like to want to do something and be physically incapable of it. I am thankful that my moments like that are fleeting. I feel so awful for those that are stuck in that condition permanently and I am in awe of what they accomplish with those kinds of limitations.
This last week I have finally had my first almost pain free days since this started in August 2018. They have been glorious. They have also made me see how much I've lost and given up in the last 6 months. It's left me contemplative, remorseful and reinvigorated to do better and be better. At least as long as the meds work. My current meds make me stupid, dizzy, short tempered and cause rapid weight gain, aren't those some fun side effects? I'm learning how to deal with them so I only feel ridiculous some of the time now. I don't actually know if they're working, if my amazing physical therapist has pushed a magic button, or if I am in remission, which is something this disease can swing you in and out of at will. But whatever is happening, I'll take it.
Not really looking for thoughts and prayers or even for support, just wanted to possibly provide my world with some understanding of whatever this monster is. I can't imagine how worried you've been about my recent scarf fetishes, my sudden need for glasses or the fact that you never see me and I often don't answer texts anymore. I have not been myself. The monster that I will henceforth refer to as Scarfy has been a real bitch to deal with. I apologize for the crassness, but it was the only word that felt right for the situation.
I feel remiss if I don't mention that my family has been pretty great through this. They now cook all the meals. They have figured out how to exist without me on the days where I can't speak or be around people. They proudly stand next to me as I swath myself in scarves and hide my face from the world with never a hint of embarassment. They bring me hot drinks and heating pads and give me space when I act scary. They have all educated themselves on the disease and know it's okay to let me know if I'm behaving weird or something looks off since I am not the best judge of anything anymore. The listen to audiobooks when I can't read aloud. We all work on figuring out solutions together.
As I'm rereading this I realize it sounds like I'm dying, and I'm not. I'm figuring out my new reality and even on bad days this crap is usually only a few hours of the day. I still manage to get out and have fun and function. I'm getting past the ptsd of constantly worrying that everything I do might be a trigger and getting too scared to do anything. I am going to be in charge of Scarfy and stop letting him be in charge of me. When in doubt, I bring an actual scarf everywhere I go, so I'm covered. You see what I did there? Ha. See, I'm still laughing too. Sometimes. And I have a really cute pill case now, so fun new acccessories are always a positive right?
That's it. That's all for now. I have overshared for today. It's a whiny post, I'm clearly still working on that part. I'll leave you with some informational links in case you want to know more about this ridiculous excuse for a disease and also a few ridiculous pics that I take to document when I can't make facial expressions or when even wind hurts me so I have to wear whatever mask I can devise. Question: Do you have to be Muslim to wear a hijab, because I really feel like that could be my perfect solution... I'll file that idea as research for later.
https://www.youtube.com/watch?v=8F8yflGHTTk&feature=youtu.be&fbclid=IwAR10f_QznbG-DzQoyS4tCr951l--4lsUvknaP5Bfd-14p1paqvoOFBXZqpw
https://www.youtube.com/watch?v=MDaMsJz8Rp4
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