Five places I want to visit:
- NYC (again and again and again until I just live there at least part time)
- Utah to meet a very special baby and see some family again
*BONUS: London, Boston, and New Jersey (while I am in NYC, duh)
Five places I want to visit:
*BONUS: London, Boston, and New Jersey (while I am in NYC, duh)
Hello. This month has been a perfect example of why I cannot be trusted to complete any task that requires me to write something every single day about something specific. That is why the “write every day” advice from authors is bullshit in my realm.
The last week has been insanely crazy and busy, and by the time the girls go to bed, the last thing I want to do is think about anything. So instead I found myself binging the show The Bold Type on Freeform and pretty much giving up hope of being productive. Well, I watched the last episode last night and I have a deadline for a publication I write for, so it looks like productivity has to start later for me today.
Anyway, we’ve skipped a bunch of days, so let’s catch up.
Day Twelve: Movies/TV. I don’t watch a lot of movies, and I don’t watch a lot of TV on the regular, so this category is useless to me. NEXT!
Day Thirteen: Letter to my past self. I am actually going to do this for Day Thirty, so NEXT!
Day Fourteen: Flare essentials. For me, coping with a flare depends solely on where I am when the flare starts, how long it lasts, and what the level is. I typically keep IC friendly snacks on me to help me level out a flare, along with lots of water (La Croix is a big helper for me these days), Clary Sage essential oil, and Advil. I try to sit around if I can, which is so rare, but I try to really focus on the self care when these happen. It isn’t always possible, but I try.
Day Fifteen: Pain levels. Oh, those vary. They go from “Oh, that’s annoying.” to “OMG everything hurts, and I’m dying…” And, usually, it’s one or the other – mine seem to like to be on the extreme ends of the spectrum. Very little middle ground.
Day Sixteen: How long DX took. I kind of went over this before, and I know that my doctors knew I had this about a year and a half before anyone told me…lol. Nice, eh?
Day Seventeen: IC Myths. I am not up on the myths behind it, but I know a lot of people say, “Well you haven’t always had this pain, so you can just do what you did before,” and it’s like, no. I can’t. I have been in pain for a long time and didn’t have a name for it until about a year ago, so I can’t go back to how I was before. Everything is different now. Knowing the reason why I am in pain and how to help myself immediately means that nothing will be the same. I will never feel like I did before, and that’s okay. It’s a hard thing to come to terms with the idea that I won’t ever feel like “normal,” but normal changes for everyone all the time. And for me, living with this and its effects on my body and life is just going to be a part of my truth and journey from here on. I don’t know many myths, but I do know the truths that I have experienced. And I want to focus on what I know to be true, not what I want to try to prove wrong.
Day Eighteen: Quotes. As a writer and voracious reader, I am always writing down quotes and adding them to my inspo boards. I live for a well-placed and well-meaning quote. I think words are beautiful and using them in a beautiful way is art. And I love it.
My favorite quote is “It’s okay not to be okay.” And, it’s so true. It’s exhausting to pretend you’re okay just because someone does not understand your pain level. It’s hard to put on a smile every day when you don’t want to. So, I have to remember that it’s okay not to be okay. And that’s all I need to know.
And as long as I remember this, everything will be just fine.
Okay, so life took me some places last week, so I am going to be combining a few days here to catch up. Days nine through eleven deal with inspiration, distractions, and food.
It’s hard to pinpoint what inspires me as I find inspiration every day. When it comes to advocacy and keeping up a dialogue about IC, I find inspiration in the community of fellow folks who deal with it, and inspiration in being able to help others with their diagnoses, processes, and the like. I live my life as an open book for the most part, and I have not yet had an experience tell me that I ought to not. I enjoy sharing my story to give hope and a good laugh to others who find themselves dealing with this.
I am also going to be major cliche and say that I find inspiration in my daughters. If, heaven forbid, they end up with this disorder, I want them to know that they can come to me for any support and guidance they may need down the road. I want them to see that Mommy is a strong woman who can handle all of the things that are thrown at her, even if that means sometimes Mommy has to cry and breakdown. No one is 100% badass all the time! So, seeing them watching me go through the trials and everyday bullshit with this disorder gives me strength to keep going and doing what I do. After all, if Mommy ain’t happy, no one is happy! Haha.
Distractions are my favorite things to talk about. I find distractions every day as well. From music to books, spending time with my kids to writing, I try to find some sort of escape every day. When I am in a huge flare, headphones come on and I attempt to do what I need to do to minimize its strength. I find that keeping my mind busy (when is it not?) keeps me from being crushed under the weight of the pain. And, anything I can do to keep myself going is a winner in my book.
Food is something I still fight with every day. Like I said before, some days I eat all the right things and feel great. Others? I eat all the right things, and it doesn’t help. So, for me, food is a battle. I know certain things I cannot tolerate no matter what. And that list sometimes changes as time goes on. I can go from not being able to eat tomatoes to being able to eat them by the handful. Strawberries? No more. Blueberries? Pass me the bowl! Milk? No. Ice cream? Yes! It’s all a shell game, really, and every day is different. With something like this, you can’t count on anything being consistent, and that’s really the worst part of it all.
Thanks for sticking it out with me. I can’t wait to finish the month strong on my challenge and hopefully educate and inspire more folks!
I may not be perfection, but I am always a work in progress…
In another effort to stop clogging the feeds with the things, I am going to combine days seven and eight – Treatment and Friendship.
Day Seven – Treatment. I am not in any specific treatment plan for my IC, as I have said before, but I do work on managing my diet as much as possible and also taking my vitamins and Advil. I am going to talk to my doctor next week about potentially starting on a tricyclic antidepressant that I have been researching that helps with chronic pain, but that conversation has yet to happen. I am very wary of medications, but it seems a lot of patients in my studies I have looked at really are helped by this, and it seems worth a try, at the very least. I have also considered pelvic floor therapy – something my doctor and I discussed last month – to try to help me with some of my issues in that area, so we will see. I know options are open and get wider open every time a new discovery is made, so I try to stay on the forefront of all of it…. which can be exhausting for sure.
Day Eight – Friendship. If I am being honest, my friends are the fucking best. My friends keep me afloat on the days I want to toss in the towel and bury myself in my blankets. In fact, many of them offer to come help build the blanket fort and stay with me, lol. I miss my friends, a lot, because life doesn’t allow us to spend the time together we’d like. But thanks to social media, I am in contact with them a lot of the time, and they offer support I have never known. They may not understand what I am going through directly, but they know me well enough to know when I need a kick in the ass or a pick me up. I am so grateful for the little village I have amassed, and I don’t know what I would do without them. And I am able to be knowledgeable and help them with bullshit because I have been through – and am going through – bullshit, so it works for everyone. And really, that’s all I want – to be able to help someone with my own experience and knowledge of things. I mean, it’s the least I could do, really. Build a bigger table, not a wall.
I know you think your friends are the best.
Sorry, you’re wrong … mine are 🙂
Due to unforeseen challenges from yesterday, I am combining days five and six today. So, here it goes.
Day Five: Something Happy. I try to remain upbeat most of the time, so I try to remain happy as much as possible. So, for me, I find something happy every single day. It isn’t always easy – it’s life in the political era of today after all – but I do. I have to! Life is too short to be miserable. Finding something to be happy about every single day is imperative to my well-being. And it keeps me going.
Day Six: Meds. As I talked about briefly the other day, I do take some medicines sort of for IC, but none of them are prescriptions or the like. I take a fistful of vitamins, iron, probiotics, coconut oil, and Advil. I have some samples of Prelief, which is a drug that helps eradicate acid in food, but I have not tried it. I know that other medicines exist that I could get prescriptions for pain killers and the like. But, I have the type of system that cannot tolerate Benadryl let alone prescription drugs. If you’ve seen the videos of the girls after anesthesia, where they talk all crazy and shit, that’s me on, like, hydrocodone. I took one Oxy after my hysterectomy, and I laid in bed and felt my blood running through my body. I took the bottle to the Fire Dept the next day and that was that. No more. So, I am hesitant to try medications. I do a lot of essential oil things for every day life, and I know a lot of them are good for bladder-y things as well.
This is pretty much my motto…