It has been quite some time since my last post and I felt a Bottled Time update was in order before moving forward. What have Eleanor Roosevelt and I been doing since July? Living la vida loca of course. ¡La vida loca crónica! What does a crazy chronic life entail? I’m so glad you asked. Read on dear friend, read on!
Living, Loving, & Laughing:
This summer seems like a crazy blur. It feels like I was either dancing the dream (because dancing makes everything better) or supine in the recovery zone. Either way, I didn’t have the necessary energy, beyond the tasks at hand, to stay up with internet details. As my fellow Spoonie Warriors know, that’s the way chronic illness works. Something that would be down-time for a Normie is a dedicated activity for a Spoonie. Thanks for waiting for Eleanor and I to have the spoons to write. Well, she’s actually had the spoons for awhile but she’s hoarding them in the hopes that she can later trade them for treats. I don’t think she gets how this works. Silly Schween.
Here’s some of the things that have been consuming our spoons:
Eleanor, my mom, and I spent a week at Chautauqua. Oh how I love that place. It really is a Spoonie’s dream. I could hear the afternoon lectures from our front porch and everything is on the grounds. Ballet, opera, plays, concerts. It’s a lot to squeeze into a week but the set-up meant I could take my medication and still go to events. No driving necessary and my bed was only a few minutes away. Combine that with my mom’s amazing help and companionship and the week truly was fantastic. Of course Eleanor was a big hit. And it turns out that The First Lady Eleanor Roosevelt actually visited Chautauqua in her living years. So, my Schweenie was the second Eleanor Roosevelt to grace their grounds (also in her living years). You can see some cool photographs and read some interesting facts about the First Lady’s visits to Chautauqua in the book Chautauqua Institution: 1874-1974. In this Google preview, pay close attention to pages 109 & 112.
While at Chautauqua, we got the news that my husband was being promoted to Chief in the NAVY. Yay! As he would have six weeks of induction, I went with my mom to our New York homestead. That was a bit bitter sweet for me. I love visiting my family but knowing that I needed to be there because it would not be wise for me to be on my own was, as always, hard to swallow. However, celebrating my birthday surrounded by their love was just the spoonful of sugar I needed to get that reality down.
Eleanor also got to see many of her cousins in NY- with four legs and two. Both of us loved that time and wish we could’ve had some more. Eleanor expressed this sentiment by trying to lick off enough of each kid that she’d have a cousin-keepsake treasure trove in her tummy to take back to Virginia. Now that we’re in Virginia, I assume she’s regurgitated their bits and hidden them with her bones and other special toys.
On this side of the Mason-Dixon, we had my husband’s induction ceremony and Khaki Ball to attend, which meant preparing for these events while still in Yankee territory. Shopping is often difficult for me and needing to perform such a task while in the New York country side, 30-45 minutes from the closest mall, didn’t make things easier. However, I had ordered two dresses online earlier that summer that luckily met my needs. Which left shoes. If one can’t get to the mall, where should one look for shoes in Cow Country USA? Why The Power and Paddle of course!
Unfortunately, I did not find what I was looking for and decided to try and make it to the mall after all. Sadly, it became very clear in the days leading up to my departure, that not only was I not going to make it to the mall, I wasn’t going to make it out of bed. And so here is where I give a big shout out to my dad. He returned to The Power and Paddle armed with a picture of a black pair of dress sandals that I thought would suffice. I am well aware that not all dads will go shoe shopping for their daughters-especially without their daughters. So, thank you Pops! However, the shoes had already been sold. Bugger! Luckily the internet came to the rescue once more and I had shoes waiting for me in Virginia. Even luckier, they fit my distinctive feet. Both the induction ceremony and Khaki Ball went well and The Dish and I are very excited to be a part of the Chief Family.
As Mike and I were geographically separated for our anniversary (and birthdays), we celebrated last month by jumping into our futures and out of a plane together. In other words, we went sky diving. As neither of us had ever been before, we tandem jumped with instructors – meaning we celebrated our anniversary strapped to other men. It was incredible. Of course the thrill of falling through the air was invigorating, but the canopy ride (once the shoot is opened) was probably my favorite part. Everything was perfectly silent and peaceful. And since we jumped at sunset, the view was especially lovely.
The only hitch came when it was time to get our harnesses on. The instructor started by informing me, “We don’t have any child-sized harnesses,” (or any for grown women with digestive diseases apparently) “so we’re just going to tighten this the best we can.” Add to this that my husband thought it was a good idea to show me a YouTube video of a woman falling out of her harness just before we left the house. Criminy. Now before you think I’m too crazy for jumping anyway, you should know that some sound reasoning went into my decision. The woman in the video survived because her instructor held onto her and my instructor, Scott, looked to be in good-enough shape. Plus I really, really wanted to go. And now I have 14,000 feet and 120 MPH of sheer happy reasons why I want to go again.
And medically speaking how are things? I believe the official term is “Meh.” I’m still struggling with my IBD. In fact, on the day of the sky dive, I was more afraid of pooing on my tandem instructor than I was of jumping out of the plane (a fact I didn’t mention to the instructor or in my video-interview). I’m glad to say I dodged that bullet, or should I say Scott dodged that bullet. It was definitely a close-call. I believe the official flight term would be a “near-miss.”
The fun “extras” of IBD (like arthritis and kidney stones) also continue to keep their presence known. In fact, after the Khaki Ball my hip and I had quite the roe. It seemed to think that the proper response to two turns on the dance floor was feeling like it’d been in a car accident. I reminded it that shaking my groove thing was good for the soul. Knowing we were never going to agree on this topic we called a truce a few days later.
In general, I’m struggling with pain every day and have had many days, despite pain killers, that have left me resorting to old-fashioned pain-management techniques like biting on leather straps. We figure this is from the IBD and a dysfunction in my j-pouch. We have increased the Cimzia to once a week and are continuing to seek answers locally and at John’s Hopkins.
In terms of my Epilepsy, I am off of the Keppra. Insert singing angels here. While on that medicine, it was like I was covered in a thick blanket of suicidal thoughts, depression, and rage that literally held me down. Intellectually I was in a fog and could not read or write (which certainly didn’t help with the depression). The Keppra also flared my interstitial cystitis. So again, let the angel’s rejoice. Hallelujah I am off the Keppra!
I switched to Neurontin and started devouring books. Yum. However, I am still struggling with writing, especially as I up the dose. The medicine also makes my tongue occasionally give up on words. For instance, I’ll try to say “running” and it’ll come out “runnet.” I’m sure I sound drunk 90% of the time. Probably a good thing I’m not runnet for President this year. Hopefully this will all be straightened out in four years so I can initiate my plan to take over the world. As the Neurontin has yet to eliminate the seizures, and because of some additional side effects not listed here, it might soon be ruled out as option for me anyway. If that’s the case I might give trepanning a shot. It seems like the next logical step.
Eleanor and I want to hear from you! What is your favorite summer memory? What are you most looking forward to this fall? And what are you being for Halloween? Comment below or on the Bottled Time Facebook Page, where you can also share your own Spooky Pictures!
Related Articles From This Site:
There are lots of links to other Bottled Time posts sprinkled throughout this update. Click on those eye-catching underlined words to check them out! Or amuse yourself with my suggestions from The Beyond:
Related Articles From Other Sites:
Pain: a word too many of us are familiar with. Pain killers: a term many of us know but are reluctant to discuss. Hurt Blogger is opening up about her experience: Pain Medication: Truth
I’m not the only one who winds up playing catch-up after any sort of trip. RA Girl understands what it means to manage spoons for the big and little things in life. Read her reflections Dishing Out My Spoons and then check out her British to American translations at the bottom of The Power of Words… for a bit of humor.
I just discovered this gem: Sheris Healing Flower Garden. Sheri is a Spoonie and shares some of her loves in pictures and words in her “garden.” It might be a better distraction from the pain than that leather strap I mentioned earlier.