Friends, Can You Help Me?

I’ll try to keep this short and sweet so as to not burden anyone.

I need help from you, my faithful readers.

The brain fog caused by one of my medical conditions, POTS, a form of dysautonomia, has made it monumentally difficult for me to think. It’s like…my thoughts won’t connect, or certain parts of my brain won’t talk to each other. I can almost feel this void in the middle of my head, like a bridge is out over a river. I can feel an idea, or a sentence starting somewhere, but then it doesn’t get to where it needs to go, and it never materializes. I feel as though I’m stuck with all of these thoughts bouncing around in my head, but they won’t come out or even come to fruition.

I’m not using this as an excuse for my less than stellar writing as of late or for my general lack of writing altogether. I just can’t come up with anything that I think would be worth anyone’s while to read. So I’ve stopped writing. Or I’ll write something and immediately trash it because it’s not of a high enough standard for me to release to all of you.

So here’s where I need your help.

  1. If you have anything about any of our specific disease states (and this is being cross-posted, so this means endometriosis, adenomyosis, POTS and dysautonomia, that stupid brain tumor, celiac disease, depression, social anxiety, infertility, etc) that you would like to see a blog post written about, please comment and let me know! I can’t guarantee I’ll be able to get a post out of it, but I’ll give it a good college try.
  2. Is there anything regarding myself you’d be more interested in knowing about? I will answer questions about almost anything, while maintaining privacy where appropriate.
  3. My blog does better the more followers I have. So instead of having to scroll through Facebook and hope to stumble across one of my posts, I invite you to go to the About page of my blog, scroll down to where it says “Follow Blog By E-mail,” and sign up! You will receive an e-mail only when I post, and no spam! If you happen to have a WordPress account, you can sign up using that too.
  4. If you have a blog and want to share, feel free to comment and leave a link so we know about each other’s blogs! It’s best to encourage and inspire each other, not to mention providing support to each other because of what we’re going through.

I really just need a spark to light the fuse in my brain somewhere. I’ve been trying and trying and can’t get through this brain fog. It’s made me want to quit blogging, and I’m very close to doing just that because I can’t deliver quality blog posts to you, my dear readers, anymore. For that, I am sorry.

If you can do anything to help me out, don’t hesitate to suggest an idea. You all are what makes this blog possible and meaningful, not me. That’s why I need your help to get me off the floor and get my brain working again.

I don’t want to quit blogging. But if I just stay like this and don’t move forward soon, I’ll have no choice. Please help me to not let that happen.

I love you all.

💛ribbonrx

Fighting Back With Love

Recently, I wrote a post that ended up being quite popular within the dysautonomia community. It’s actually been the most popular post I’ve written this year. I honestly have no idea why; I have read it over and over again and can’t seem to find what is so remarkable about it. When I asked my husband, even he said there was nothing profound about it. (Thanks, honey; I can always count on you to be honest. 😊) But whatever it is, I’m still grateful for the 843 hits, plus the 70 Facebook shares thus far. (That’s a lot for my blog, ok?) To those who found it worthy of reading and/or sharing, thank you so much! I hope the post was helpful to you in your own fight, or friend’s or family member’s fight, with dysautonomia.

It was encouraging to me to write because as I reminisced, I realized that I have made some decent progress since I was diagnosed in January as I’ve teased out what works and what doesn’t regarding symptom management. Things are a bit challenging at the moment because my cardiologist has been on unexpected medical leave since April (starting two days before my appointment where we were going to start Florinef) and I don’t see a POTS neurologist until July (after having waited seven months for the appointment), so right now everything is on hold and nobody is managing my POTS at all. So I likely could have made even more progress by now had things gone differently, but I’m just being patient and trying to do my best in the meantime.

But that particular post unfortunately brought up another issue that coincides all too often with posting things of a medical nature on social media: people who feel they have the right to judge you for how you’re handling your illness. Continue reading “Fighting Back With Love”

In Which People I’ve Never Met Become My Friends

I’ve always been a difficult person to be friends with. And I’m not easy to love.

Although life didn’t start out that way. One day in pre-school, my mom was shocked to see me sitting at a table with all the little boys in the class crowding around me, the only girl at the table. If only I had such admiration ten years later!

In all seriousness, I think a lot of my friend-making difficulty stems from my social anxiety, which started baring its teeth around the age of nine. There were really a lot of people who didn’t like me for reasons explained in that post, and it scarred me for life. I still remember the torment and how it made me feel. I was always the smart one, not the pretty one, and brains didn’t earn you many friends. Middle school and high school were awful for obvious reasons, so I was thrilled to go to college over 400 miles away from home where I didn’t know a soul. Friendships were much easier to maintain there because everyone was starting on a clean slate. Although I can still recall during the last two or three years (of a six-year program) a few examples of downright deliberate cruelty perpetuated by young women I thought were my friends…

IMG_1324

But it’s now been almost seven years since I graduated from pharmacy school. I’m almost seven years into my career. But for the past ten months, I’ve been on medical leave in order to have and recover from three surgeries in a four-month period: hernia repair, brain tumor removal, and aneurysm stenting. However, just as I was about to go back to work, POTS happened, likely as a result of all those surgeries. And having POTS sucks incredibly. It’s not something I would wish on my worst enemy.

But what does this have to do with friendship?

Everything. Continue reading “In Which People I’ve Never Met Become My Friends”

Share Your World: Ribbonrx Edition: April 3, 2017

This will be a weekly post of the most random of random questions to answer- to share my world! Unfortunately, Cee has been ill and wasn’t able to prepare the challenge questions for this week, but fear not! I pulled out some questions from a journal prompt I did last week that fits the bill! So, onward!

What’s something you like to do the old-fashioned way? I guess it depends on how old-fashioned you’re talking about. I love modern technology; the easier it makes my life, the better. But I guess I prefer writing things down on a paper calendar or planner as opposed to using Google calendar or something along those lines. I think it looks better and it’s easier to see the big picture. (Plus my Happy Planner is so pretty!)

IMG_1976
This week’s spread in my Happy Planner!

Continue reading “Share Your World: Ribbonrx Edition: April 3, 2017”

Share Your World- March 20, 2017

This will be a weekly post of the most random of random questions to answer- to share my world! Thanks to Cee’s blog for being the brainchild behind this!

How old would you be if you didn’t know how old you are? This is a very interesting question. Do I not know how old I am because I am ignorant of the concept of time? Or because I am a Time Lord? (Should I open that fob watch…?) If I were ignorant of the concept of time, I would not be any age, because I wouldn’t know that there are numbers associated with the passage of time. It would be like what heaven will be like: eternity, where time doesn’t pass, it just is. Continue reading “Share Your World- March 20, 2017”

Have Yourself a Spoonie Little Christmas

Even though I was diagnosed with endometriosis in 2014, I have to say this Christmas will really be my first as a true spoonie. (Not sure what I mean when I say spoonie? Check it out here to learn about the Spoon Theory.) 2016 added a whole mountain range of problems to my health history, all of which I’ve had to climb to overcome. (And considering the Grand Canyon fiasco from 2013, I don’t have the greatest climbing skills…but that’s another blog post someday.)

Even just preparing for Christmas as a spoonie is a huge challenge. Continue reading “Have Yourself a Spoonie Little Christmas”

Pre-Op Day…Again!

Having three surgeries in four months makes for a lot of pre-op testing. Today was pre-op day for surgery number three in 2016-placement of the Pipeline Embolization Device for my aneurysm.

The day began far too early. I went to bed at midnight because my first appointment was at 8:15 am. Unfortunately, I woke up at 3:30 am and couldn’t fall back asleep. I tried going upstairs at 5 am to snuggle with my black kitty Luna on “her” bed, (anyone else have a queen-sized bed their cat has claimed as their own?) but still I lay there awake. I almost cried when my alarm went off at 6:45 am. And of course, I still managed to be late getting out of bed. I ended up getting up when I wanted to leave. Oops. But I just barely made it in time by speeding and parking in a different parking garage than I was planning to, which cut out a 15-minute walk. Continue reading “Pre-Op Day…Again!”