Sue has now left, but before she did she helped me with one final thing – picking out the dreaded medical ID bracelet. Let me tell you, the available selection of these “accessories” is woeful. Even when I searched for designer bracelets the most I could find were horrible sport straps or heinous beads and charms. Not to mention that in order to get all of the information I need onto one I was repeatedly having to look at the larger size ID bracelets meant for men. Ick. Honestly it was enough to make me flout medical advice and just not wear one.
But Sue and I persevered and after many, many sites (and my heated cries of “That one’s ugly! That one’s disgusting!”) we finally found a bracelet that didn’t immediately make me run screaming for the hills. It’s a simple, stainless steel bangle from StickyJ.com that I can easily clip on and off by myself.
I’ve decided to go with the “Parisian” font and even checked in with Jen R.N. to make sure that what I was engraving would make sense to medical professionals in the event of an actual emergency. Though I whine a lot, in the end I do try to keep myself safe.
But still, if there are any jewellery designers out there reading this – give me a shout, I’ve got LOTS of ideas on how you can take advantage of this niche market by making pretty, elegant options for those of us stuck having to wear these things.
I woke up feeling crappy today, maybe the crappiest since the surgery. I was down quite a few spoons and had a generally blah attitude. By sheer coincidence I also woke up to a waiting package from the fabulous Ms. Amy. I honestly believe the universe conspired to bring this package to me today because inside was the most remarkable gift of spoons I have yet encountered!
Long time no post, I know. I apologise. But really, if you knew the nitty-gritty of my recovery days I think you’d thank me for keeping you in the dark. Suffice to say time has been marked by milestones such as going potty alone, taking a shower by myself, fastening a bra and even cutting my own food. Actually, the very first milestone was lifting a fork by myself, but that one was reached quickly – thank heavens.
In all seriousness though, we only had two slight complications working against a speedy recovery. The first was when my myasthenia meds weren’t adjusted and started to sicken (if you’re dramatic like me, read “poison”) me. The second was when I started to develop an itch. Then some hives. Then some welts. Turns out I was allergic to my heavy duty pain meds. Which heavy duty meds? That would be the one paracetamol (yes, like Panadol) tablet a day. How did I never know I was allergic to it? Because I’ve never taken paracetamol before! But a quick trip to my GP sorted that out with some anti-histamines and steroid cream. Yay for steroids!
Other than that fun, life could be worse. Sue is here to be my PA, the bruising and swelling is down, I’m pretty much pain free and the scar itself is healing up nicely. So nicely that the GP didn’t believe me when I told her the surgery date, she was certain I was leaving out a week or two. Laurence was there to confirm that I was neither stupid nor a liar though, so that was nice. It’s still too early to have any real idea of how this is all going to help the myasthenia and/or any other autoimmune issues, but for now my eyes are opening a little wider and I certainly don’t have any less strength than normal so I’m pleased with it. I wasn’t singing that tune back when it was hot and I was itchy, but that was just the one time I lost my mind. No worries, I found it again quickly.
And with that, I’m off to watch more terrible daytime TV. Suggestions of books, movies, music, etc. more than welcome at this point!
The very quick update is that surgery went well, there were only a few myasthenia complications and no surgical complications, and while the results aren’t back on the thymus itself there was nothing to be found in the surrounding area. This means that even if there was something cancerous associated with the thymus, it’s all gone now and we won’t be doing anything more about it anyway. So thumbs up there! Unfortunately the thymus was large enough that I had to have a full sternotomy but that’s life. At this point I’m not going to quibble about a 3/4 opening versus a full opening, I’d have had a scar and pain no matter what.
Anyway, I’ve been home since Friday evening and am thoroughly enjoying the gorgeous bank holiday weather from my perch near the balcony door. Pain from the surgery is now minimal but I do have some myasthenia weakness that is just getting around to hitting me. I am also totally grossed out by the appearance of my own chest and want to jump out of my skin when I think about it for too long. Needless to say, I look for any distraction.
Posting here at Shenanigans will be light for the next little while but I will try to use Twitter for some mini updates. Once again, thanks for all of the thoughts, prayers and vibes. I know that each and every one of them helped the last week go smoothly!
The surgeon just called to confirm so it looks like this is it, it’s going to happen! I’m heading in on Sunday and surgery will be on Monday. If you’re the praying/finger crossing/vibe sending sort, please pray/cross your fingers/send vibes that:
- Surgery goes well and there are no complications.
- Thymus comes out cleanly with no thymoma.
- Nothing’s going on anywhere else in the general vicinity either.
- Whoever is stitching me up is a good sewer.
- This actually works and I get some relief from the MG!
Also, thank you to the family, friends and complete strangers who have been following my tale of woe and sending me notes. I really appreciate all of you. I heart you all online (in a totally platonic way, of course):
A friend and I were standing in the children’s section of a local book shop. As we chatted, her daughter raided the dress-up box and was piling on costumes and accessories. Every time the little girl ran over I told her that she looked gorgeous and that one more string of beads or another tiara would be just the thing.
“I bet you were a terror with dressing up when you were younger,” my friend said. “I can see you in your mother’s heels, her dresses trailing behind you, jewellery all over, handbag in hand, lipstick on your mouth and cheeks. What? Why are you looking at me like that?”
“Oh sorry,” I said. ”Sometimes I forget you’ve never met my mother.”
A bunch of people have asked what I’m doing right now and my pat answer is: Waiting.
I’m not writing much, not planning anything, I’m just waiting. Waiting for surgery, waiting to find out if I happen to have a thymoma, waiting to determine if I need further medical treatments, waiting to see if the surgery works, waiting to figure out what I can do next week, next month, next year, the rest of my life.
I rest and read books, take my medicine and take sun naps when I can. I write down how I feel, what I did, and if medicine helped. I watch Oprah and Ellen and drink too much soda. I drop dishes, slip in the shower and somehow fall up steps. I’m not a terribly good wait-er.
Larry is a good wait-er on my behalf.
He gets me books, magazines and DVDs. He figures out cinema times and restaurant plans. He sends me emails and text messages. He comes up with things I absolutely must do: buy a bathrobe, find slippers, get a surgery tote bag. He teases me with things that he’s already done, surprises that can only be unleashed once I’m recovering. He tells me that “after this” we’ll go to Berlin, Paris, Dubai, Phuket. He makes me write away for literature on graduate schools and writing workshops. He asks me to make him CDs from my iTunes. He seems to know exactly when to push me to make dinner and when there’s no way I can stand up long enough to chop and sauté. When I can’t make dinner he distracts me with lengthy discussions of the best type of Thai curry to order instead. And if I seem like I might have a breakdown he pulls out the heavy artillery: plans for the home office I’ll have one day, blueprints for a dream home, picking out children’s names, how I’d spend my money if I won the EuroMillions, if Bruce Jenner looks better with his new face-lift.
Recently I was flipping channels and Gossip Girl came on. Chuck Bass appeared in some sort of plum velour track suit with a popped collared shirt and an ascot tied neatly at his neck – on a basketball court. Unable to help myself I exclaimed “Oooh, Chuck Bass!”
Larry: Who’s Chuck Bass?
Beth: That guy. You know, Chuck Bass. Manly enough at 17 to wear pink and purple and flowers and paisley.
Larry: I wear pink and purple.
Beth: Yeah. Well. You shouldn’t, you’re not Chuck Bass.
