Modifications and Coping

Modifications and Coping

Finally, a post that’s not about dry medical procedures and appointments! I’m not expecting this post to be much of anything, though. I just need an outlet to get my thoughts together.

Since my appointment with Dr. J the first week of January, I’ve made the specified modifications he asked me to do to help me feel better. But it’s not all physical things I’m dealing with. My emotions are all over the place right now, going from angry to sad to…nothing, I guess. So how am I doing, really?


As previously mentioned, I’ve had to make some modifications to my lifestyle in order to alleviate my symptoms as much as possible and bring myself back to as normal a level of functioning as possible. These include:

  • Drinking two liters of Gatorade a day (although I think I’m actually doing more than that.) I’ve been a good water drinker since my brain surgery, so I’m making sure to get in two liters of water, too. (Keep in mind a person of my weight only needs about 1.6 liters of fluid a day, and I’m probably realistically pushing 5 liters. All to keep me feeling only kinda sorta better.)img_0874
  • Increasing the amount of salt in my diet to total 5 grams daily. That is actually a horrific amount of salt for someone who eats like a bird like I do. So although I’ve been eating gluten free pretzels like they’re going out of style and eating pickles until I feel like I’m going to puke, I bought salt tablets online to make up the difference. I think that’s most of what makes me feel better, to be honest. Although I’ve begun to suspect they’re the culprit for my bouts of nausea that come around several times a day, even though I’m taking the buffered Thermotabs. Right now I’m taking two tablets (just shy of 1 g of salt) three to four times a day, or whenever I start to feel particularly funky.
  • Wearing compression socks during the day. This helps to keep blood from pooling in my legs since my heart is misbehaving and not pumping it where it belongs (like, my brain…) I bought cute compression socks online, because if I have to wear them every day for who knows how long, who wants to wear those ugly ones?fullsizerender
  • Elevating the head of the bed. We put paving stones under the legs at the head of the bed. I’m not sure when I’m supposed to notice a difference, but I haven’t so far, so we’re going to try going up to two paving stones under each leg (so about 4″of elevation, or as close to 5 degrees as we can get.)


This is where things aren’t going so well.

Last year, during the worst times (which was in actuality all year), I would write and write and write in my journals. I still want to do that to release those emotions and write about things I sometimes don’t feel belong on here. But it’s impossible to write when I can’t sit upright at 90 degrees for long periods of time. When I do write, I have to recline and rest every couple sentences sometimes. This depresses me greatly, because writing has always been my outlet. So when I can’t write, I just sit and stare at the wall with all these bottled up emotions and thoughts raging inside me like a forest fire.

The one thing I am able to do in a reclined position (aside from blogging) is reading. I got a huge haul of books for Christmas and I still have stashes of books from previous Christmases that I have yet to read. I signed up on Goodreads to challenge myself to read this year. So far I’ve read two books, The Humans by Matt Haig (5 stars) and A Thousand Naked Strangers by Kevin Hazzard (4 stars).

Both were on the shorter side, but now I’m about to start Lilac Girls by Martha Hall Kelly (476 pages.) I’m also reading When God Doesn’t Fix It by Laura Story on the side, because right now it doesn’t seem like God is “fixing” anything in my life and because Laura’s husband Martin had a pituitary tumor. Kindred spirits, I suppose.

I’ve been trying to listen to music to get my mind off things. Doesn’t really work because I just end up zoning out and not paying attention to the music at all.

Sherlock and I are getting along all right. I can’t even feel it much anymore and dealing with its intricacies is second nature now. Seven days to go; I get to take it off on Friday!

I am extremely lonely. David’s at work all the time and then he’ll be gone most of this week in California. The only people I talk to anymore are David and my family. And the people in the support groups because they’re the only ones who actually understand what all this is like. Other than that, no one has made an effort to talk to me anymore. I guess they’re just done with me and don’t care anymore. If they feel that way about me, how do they think I feel about myself as the one going through all this junk? I guess I’m just not worth thinking about anymore.

I’m also depressed about our ongoing fertility struggles. My periods have been completely irregular since the tumor was removed, making timing of things incredibly difficult. But now that I have radioactive material inside of me, it’s not safe to conceive before the middle of April. So the year has barely started and I already know that we will not have a 2017 baby either. Everyone was saying “2017 will be your year!” (as they said in 2014…and 2015…and 2016…) I was never convinced and I guess my intuition was right. I haven’t had enough time to process my emotions about that yet.

Maybe I’ll pull out my yellow mail list and send some encouragement cards to some of my endo sisters. It always makes me feel good to make other people happy. It helps to be reminded you’re not alone and that someone else can relate to your situation (even though there isn’t a soul on this planet who can relate to the disaster that is my life.) I just hope I can sit up long enough to write out the cards.

I had two sobbing breakdowns last week while I was home alone. Then I just felt like crap afterwards and my heart wasn’t happy about it either.

So no, the coping is not going well. But I may have an official diagnosis by the end of the week, which will be a huge relief.


7 thoughts on “Modifications and Coping

  1. ((((Hugs))))). Remember, God gives us what we can bear. You and your hubby are very, very strong. I chuckle when you write, “2014 will be our year! 2015 will be our year! 2016 will be our year!” Because Hubby & I definitely uttered those words. When you write, “I guess I’m just not worth thinking about anymore.” I can relate. It feels like the whole world has moved on and people are too busy with their kids to care about other people. I know it hurts. To be honest, at this point in time, I just want to talk to people who can relate to our struggles and not people who are clueless and insensitive about it. And those people are very few. To paraphrase a verse in Psalm 118, when people reject me, I am accepted by God. And God thinks nothing but good thing about you…all the time. I want to take up reading, too. How does one get a yellow list mail list of endo sisters? It’s OK to cry it out and it’s OK to have feelings about this very difficult sojourn. I write sojourn because it’s temporary. Be encouraged, Sister in Christ. I’m praying for you.

  2. Love those compression socks!

    Perhaps you could write on a private blog instead of physical diaries for the time being? Just throwing that out there because I have a private blog. And I can really relate to those feelings of loneliness too. But I’ve learned to draw close to God so I don’t feel too lonely anymore.

    1. Agreed about drawing close to God. However, I actually really like reading about her recovery. I also find her experiences very educational. I wouldn’t change a thing. Her experiences and testimony (we’re claiming it IJN) are helping women in a similar situation. I’ve learned a lot about pituitary gland and prolactin from reading her blog. Don’t change a thing, Ribbonrx!

  3. Love the fun socks! Sorry to hear you’ve been feeling lonely on top of everything. Maybe you could have skype chats with some of your friends from the support groups? I can’t imagine trying to eat that much salt each day! I love salty popcorn though, guess you could have loads of that?

Don't Be Shy! Leave a Reply!

%d bloggers like this: