I hope everyone enjoyed their holidays! I know I certainly did although I am completely exhausted and probably full of food for the next 6 days.
But alas, the holidays are not over yet because New Years eve is just around the corner! I feel like I should have taken next week off to recuperate from the holiday season.
But I can’t believe a year has already come and gone….. and so much happened in 2017, not just to me personally, but across the world. So many terrible events, huge social movements, huge set backs in our ways of thinking, and terrorism. But also good things, you just tend to forget those good things because all the world seems to focus on is the bad.
But my dear readers, I almost started this little blog a year ago! I started the new year sick and sure enough, ended the year sick. I almost wonder if my body is just trying to tell me the inevitable. As if we are just trying to buy more time, but my body is just really screaming that it wants my colon out. I keep trying to be optimistic, but a part of me feels like maybe it’s just time to start accepting it more seriously, that surgery may be my only option. I know I said my doctor was optimistic, but I’m getting a little worried. I can feel my body change, and not for the better. I wish for it so badly to be just because Entyvio has worn off since my next infusion is this Friday and that the stress of the holidays is also making it a little worse, but I have this pit in my stomach that it’s just a sign that again Prednisone was the only thing keeping me afloat.
It’s an exhausting emotional roller coaster. At what point do we wave our little white flag? At what point do we just sigh and say “Okay body, you put up a really good fight. I give up, you win.”
I just want to be better.
I just want to eat whatever I want and look at that plate of food and laugh at the days when I couldn’t eat it because it would go straight through me. I want to not cry in pain anymore. I want to actually have energy for things. And a sex drive! I want to actually wake up from 7-12 hours of sleep and actually feel like I got sleep. Or to wake up and not feel like an 85 year old woman with joint pain. I want to not worry about where I am in public and have to look for a washroom every time I leave my house. I want to not be teetering on this scale of feeling fine, feeling depressed, feeling anxious, or just feeling plain old crazy. I WANT MY FACE BACK. No more of this puffy chipmunk shit. I already have a baby face, I don’t need help looking younger… But the other weight, I can keep that.
I want, I want, I want.
I sound like a whiney kid. But it’s not just a want, it’s a need. I need to get better. I don’t know how long I can keep at this, while trying to balance everything else. We haven’t even made it to remission yet, so the thought of this being something I deal with to an extent for the rest of my life is daunting. What does forever even look like? I’m 23, I still have a long road (hopefully) ahead of me. I can’t imagine people younger than me impacted by a chronic illness.
That’s a hell of a commitment. And it’s not like a marriage where you can just opt out, you’re stuck with it and my body likes to remind me that we are in this journey together. Especially every time I try to go out. Like today. Fine all day at the house, but the minute I stepped into a store I had to do my quick little walk to a washroom while I toss my purse and tea to my poor boyfriend and we just made it in time.
But despite all this, I know I’m not ready for surgery. I want to exhaust all my options before I cross that bridge. I still have some fight left in me. And surgery isn’t a cure. I have met so many people who have gotten the surgery (whether its partial or complete) and still face so many problems, some worse than what they started with! It’s scary. Again, it’s a disease that we only know less than 50% about, so if you don’t know why your body is attacking itself, how are you supposed to know how to stop it and what happens when you try to remove something? Everyone reacts so differently.
I need to do more research. And get more sleep.
Speaking of sleep, that’s what I shall try to do instead of sitting here stressing. Stress does not help.
3 thoughts on “Late night thoughts”
Yep, yep this is where I was at a few months ago. But since I had my colon out I had amazing holidays–I threw a fabulous Christmas party (and had energy to do the shopping, clean the house, decorate (like pinterest perfect), AND prepare all the food. And I hosted a small dinner party/gingerbread house decorating party, where again I planned/shopped, cooked and cleaned.
I couldn’t have done any of that last year. I went to ALL the Christmas festivities with my husband and toddler–I wasn’t too tired or too in-pain so I enjoyed every bit of it. I have been drinking wine again–I love wine! I have not been able to drink in years, even before this last flare my immune system was perpetually inflamed and any little thing (not enough sleep, stress, a glass of wine) would set it off. Taking the colon out calmed my entire immune system. No, I don’t love the bag, but I love my FREEDOM! So just, take that for what it’s worth. XOXO
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Thank you for this response. I’ve been hearing so many mixed things about it all that it started feeling overwhelming! I’m so happy to hear you had such a wonderful holidays though! You deserved it 🙂
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I’ve read mixed reviews too, but on chat boards and FB groups I’m a part of, I see LOTS of young women having great success with j-pouches and ostomies. I see a lot of good, uncomplicated outcomes. And even the complicated ones say they are still better off after the surgery. This is not to stampede you toward surgery, but just to give you some hope and courage about it. I want 2018 to be better for you! XOXO