I'm still standing

I’m still here. I'm still standing.

Someone told me the other day that they’ve noticed my lack of a blog post since earlier in the Fall and I realized that they were 100% right. I’ve totally been MIA. Well...I can’t really say MIA because I’m here. I’m just working, working, working with a little bit of working on the side. I also usually follow that up with a side of working. Throw in a dash of sleep and there you have it. I’ve also been feeling more like myself than I have in a REALLY long time. Before you even read this next sentence...knock on wood. I’m actually not kidding. Please knock on wood because if I jinx myself by throwing this out there to the world...I’ll be so mad.

Ok, wood knocking aside.

I FEEL GOOD.

SO GOOD.

SO GOOD.

3 months and 17 days as of today with only a few small blips along the way. SO exciting.

What does this mean???

It means I’m in some form of remission right now, which can happen to people with Gastroparesis. Considering I also have a million other diagnoses (ineffective esophageal motility, partial paralysis of my lower digestive tract, a mild form of dysautonomia, irritable bowel syndrome and GERD, just to name a few) it’s shocking that they’ve all decided to press pause for a moment. It does go to show how intertwined the vagal nerve truly is.

Am I symptom free?

NOPE

Not even a little bit

This often shocks people when I tell them that. “But you feel good?”. Yep. I feel great. You see, from January of 2021 to June of 2021 I was a shell of a human being. And that's putting it nicely. I wasn’t eating. I wasn’t drinking. I was throwing up more than I was not throwing up. I was passing out. I was in so much pain, I’ll never be able to describe it to anyone. Ever. I spent hours, sometimes days curled up on my bathroom floor with the toilet and a garbage can (just in case I couldn’t lift my head to toilet height), a blanket and my dog (thank god for nurse Rena). I was exhausted on a level that was so deep, no sleep ever made a difference. I could go on forever. Words don’t do it justice. It was horrific and terrifying. I often compare it to how "normal" people feel when they have the stomach bug, but that doesn't even begin to touch the magnitude of what I was going through. I don’t want to ever go back to that place.

But I will go back to that place. That is just the nature of this disease. I feel good, but I’m also scared. EVERY DAY. And every day I wake up and tell myself “You’ve survived 100% of your bad days, so whatever today brings you, you can do it.” But the truth is, at any moment I could be back there. It’s a weird, eerie way to live life.

I still have a lot of restrictions. I’m feeling good because my body is responding to the way I’m treating it. I eat the same thing everyday for lunch. I eat at the same time every day (I eat at the same time as my lunch break at work because I don’t want to throw anything off), so my only meal of the day is at 11:30 AM. If you get to enjoy a nice, quiet meal at home with your family...thank your lucky stars every day. My one meal of the day is spent working (cuz god forbid teachers take an actual break), it is rushed and almost never enjoyable (mostly because I am still very self-conscious of eating in front of other people). If I veer too much from this time, my symptoms start to rage. This past weekend - I didn't follow my "schedule" because I had a fun event planned with friends and I ended up having to leave early because I thought I was either going to pass out or throw up, neither option sounded very enticing. I have so much anxiety surrounding meals and holidays and unfortunately, as much as people try to accommodate me. It’s hard. No one wants to eat a big meal at 11:30. No one wants to give up the things they love to eat. Everyone wants to go out to dinner. And I honestly don’t blame them.

But here’s what I’m working with, and this is just me being HONEST. Thanksgiving is next week and I've already been stressing about it for weeks now. As much as I don’t want to, I have to. Here is my reality: I spend the holiday with family who live about an hour and a half away. We are arriving at their house at 1:30 and dinner is at 3:00. I definitely can’t eat at 3:00 and 1:30 is two hours past my prime. Therefore...I’ll have to eat in the car, while driving to Thanksgiving dinner. I will literally have to make myself mashed potatoes, heat them up, and eat in a car. I have to do this to honor my body. I love food. I used to be a foodie (I still am, but now I'm a foodie who just dreams about food and can never eat it). I used to love Thanksgiving. Now, to me...it’s just a day that brings a lot of stress and sadness. I’ll eat my re-heated mashed potatoes in a car and then I’ll go sit around a table and watch my family eat all the things I love and can’t eat anymore. And then I’ll watch them eat pies and cakes and I can’t have those either. I love family and they’ll always come first. I love spending time with them. It's just hard for me. And it’s always going to be.

BUT

I’m not being negative. I’m just telling you my truth. This is my life, and this is it for the rest of my life.

I’ve been focusing on being positive, looking for the good in everything, and taking things step by step and day by day. Anxiety and stress play a huge part in my health and I refuse to allow myself to fall into those patterns if it means they will cause me to go into a flare. If I can prolong this “remission” and keep having these good days, then BRING IT ON.

This November, I’m thankful for 3 months and 17 days.