more than a feeling

 

Photo by Chris Townsend via Dreamstime.com

The 30-day experiment: part the third! has come to an end, and I think rather a successful one. I did indeed write every day for 30 days and, as I suspected, I have a wealth of ideas for future posts.

 

Including this one. As I said before, I had my highly anticipated visit with my NP. I’ve been on the new treatment—Enbrel, Plaquenil and MTX, plus Omeprazole (Prilosec) and a stronger muscle relaxant to help me sleep—for a few days now, and what a difference it’s made already. I feel more like myself than I have in a long time. The brain fog has receded, my pain levels have dropped—albeit only from a seven to a five or so, but it’s certainly a start—and I’m sleeping better. I can concentrate on writing (necessary, as a journalist) and I just feel human again.

It’s a nice feeling.

nerd i am

I am

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When we first learned the Professor would be teaching at his alma mater for at least an academic year, we were ecstatic. When we learned he would have a writing intensive section, I offered to go over his students’ papers for grammar and style. For their last papers, I got that chance.

Today, I got through all but three of the papers during my down time at work. Reading the work of these university students—most of them upperclassmen—reminded me of two things: how much I love copy editing and how little most of these kids know about the English language. (For the love of God, possessives and plurals are two different things!) Even though most of them were absolutely terrible, I still do love words.

But, with writing articles, editing pages and reading papers, I’m all worded out.

D(r) day

US Navy 050627-N-6495K-036 Physician's Assista...

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Today was my long-awaited trip to see my rheumatologist to find out if we could come up with some kind of plan to get me back on track. The Professor was with me, and he was very good at making sure I didn’t leave anything out—and if I did, he piped up. I definitely felt as though she heard me and understood how unlike myself I’ve been feeling.

The NP seemed shocked by how poorly I was doing when we ran down the list of symptoms: lots of pain, joint pain in new places (like my jaw, which pops all the dang time now), sleeping poorly, muscle pain, fatigue, brain fog, the weird (and likely) pleuritic chest pain…. It felt like the list went on and on. Both she and the student physician’s assistant with her gave me a full exam.

She decided to pull me off the sulfasalazine, but keep me on the methotrexate, the hydroxychloroquine (Plaquenil) and the NSAID. (She was flatly against the idea of Celebrex, which I suspected she would be. We’ll see how Dad takes it, though.) I’m back on the Enbrel, and she gave me a few samples to take home until I can get things straightened out with my insurance and the co-pay assistance program. Since Darvocet was taken off the market (and I wasn’t a huge fan, anyway), I’m going to give Percocet a try. If that doesn’t work, I’ll be on the Tylenol with Codeine, since I’m super sensitive to pain killers. She also suggested a steroid injection before I go up to Canada for the holidays, since it should help me get through the stress of driving up and driving back.

I’m hopeful this will work. I was certainly doing better while on Enbrel, and maybe in conjunction with the Yellow Dart and the Plaquenil, I’ll start feeling like myself again. Maybe I’ll even be able to pull my heels out of the closet again. That seems so far from where I am right now. But after that appointment, one phrase is back in my vocabulary: I hope.

the bare necessities

I love the next Patients for a Moment topic: things that making living with chronic illness that much easier. While the number one thing on the list would be the Professor, he’s not exactly a thing. But I digress.

  1. My laptop. Without my little four-year-old MacBook, I would be a lot less connected to the world. When I’m not feeling well enough to go out, I can still hop on Twitter or Facebook and find out what my friends are up to. I can look up new symptoms or research possible therapies. I can post on this blog and read others’ thoughts. I can watch silly videos on YouTube to raise my spirits or check out Last.fm to find my next favourite musician.
  2. My Keurig coffee maker. Though it has been on hiatus lately—we need to run vinegar or something through it to make our hot beverages taste yummy again—it is perfect to make a quick cup of coffee or tea. It has K-cups with a predetermined amount of coffee/tea/hot chocolate in it. Just pop it in, pick your beverage size and 30 seconds later, it’s ready. It’s so easy, even me in the grip of a terrible brain fog can operate it flawlessly.
  3. Cardigans. The Professor thinks I have a problem; nearly every sweater I buy is a cardigan. I can’t help it; they are absolutely perfect. They’re stylish and professional and fun. I can add one to an outfit, giving me a layer to remove if I get to hot or add if I get cold. Even on a day I’m feeling terrible, I can throw one on, belt it and still look good while being comfortable.
  4. The Body Shop’s Cottonseed Curl Booster. (Disclosure: While I did receive this product for free, it was as one of The Body Shop’s Love Your Body members, not as a result of this blog. I received nothing for the review.) Normally, I straighten my hair. That requires a blow dryer and a flat iron. However, there are days when I can’t easily lift my arms over my head, days when I don’t want to fiddle with heavy styling tools to make my hair look nice. So, I’ve been searching and searching for something to make my wavy hair look good naturally, and I’ve finally found it: the Cottonseed Curl Booster. All I have to do is wash my hair as I normally do, scrunch the product into my hair and go: no brushing, no fiddling around, no blow drying. It makes my hair wash and wear.
  5. The Scotch Pop-Up Tape Dispenser. This is the only way I get through wrapping presents, without having to fiddle with tape and a lot of cursing.

These are, of course, just a few of the things that help me through the day. But, today, they feel like the most important ones.

let’s hear those sleigh bells jingling

 

The Professor tying a jingle bell onto his shoelaces.

So, today was the big day: the Jingle Bell Run/Walk for Arthritis. Since it was held about 30 or so minutes from where we live, the Professor and I got up early to eat breakfast, have some tea, put on a bunch of layers and head out.

After we got there and grabbed our stuff, we tied on some jingle bells to our shoelaces (well, OK: He tied the bells on for both of us.) There were so many people there, all ready to walk or run in support of the Arthritis Foundation—and people like me.

Dogs weren’t allowed, and we were definitely a bit bummed about that; Otis and his adorable sweater would have had a blast. We did see a couple of dogs, so we may just have to sneak him in next year! (Probably not; I think I’m still too Canadian to break the rules that way. It would be rude.)

It was really amazing to see hundreds, thousands of people at the start/finish line. People were wearing all kinds of crazy outfits: reindeer antlers, candy-cane tights and even one guy dressed like Santa. (He was crazy; he ran in that red suit and black boots!)

Start/finish line

But there were tons and tons of people. They shut down a major street in the state capital, and Arthritis Foundation volunteers and police officers stood at the side streets, offering encouragement to those of us passing by.

The course was about a mile and a half in one direction before we did a u-turn and went back the way we came. I’d say maybe a quarter of the way in, I started feeling it. About half-way, my knees had had enough. Still, I managed to finish the whole 5 km, which was my goal. As a bonus, we didn’t come in last place! But heading in, I was OK with finishing last, as long as I finished.

It was lovely, spending part of my Saturday morning walking with the Professor for a cause that means so much to me. It was so important to me that I do this and that he match me step for step. There’s no one I would have rather done this with and very few in my life who would know how much the simple act of going for a walk would mean.

There have been days—and I’m sure there will be again—when simply getting out of bed was an epic struggle, days when buttoning a shirt reduced me to tears—days when it feels like my body has betrayed me. It was so important for me to push through all of that and walk 5 km, 3.1 miles, by just putting one foot in front of the other, over and over, until I was done. It was important to feel, if only for a few steps, how much my body still does for me, how much I can do.

It was a great day.

getting crafty

So, as I’ve written before, I’m doing the Jingle Bell Run/Walk for Arthritis tomorrow. Since the theme is (clearly) jingle bells—we’re to tie them to our shoe laces and everything—I decided to stop at Michael’s and pick up so small jingle bells and beads and make some earrings with some of the leftover chain I had from making a skeleton key necklace. Though the bells weren’t as small as I’d hoped, it still looks very festive and fun, which is the idea.

I only wish there were more people on my team, so I would have a reason to make more than one pair! They were surprisingly easy (and they dress up my DIY earring holder very nicely), even with a hand that still refuses to grasp things or twist.

Regardless, I’m pretty excited about attempting walking 5K tomorrow and being a part of something so much bigger than I am. I’m glad the Professor will be there with me; I wish they would have let dogs go, too! We got Otis an adorable knit sweater, and he would have looked positively festive with his red sweater and green leash.

It’s got my really revved up for the Walk to Cure Psoriasis in April, which I will also be doing for the first time next year. It’s kind of funny; when I posted my first 30 things about my chronic illness during Invisible Illness Week, I never expected it would prompt me to become so much more involved with other spoonies: becoming a National Psoriasis Foundation mentor, blogging more openly about my illness, participating in this 5K and even getting interviewed for articles (which was weird for me, since I’m usually the one asking the questions, but that’s another post entirely). Just one little post brought so much change. I guess it’s really hit home what Gandhi said: We must become the change we want to see.

as big as saucers

So, in my continuing effort to take good better care of myself (see: adding a PCP to my army of doctors), I had an appointment with a new ophthalmologist today. I had my prescription checked (my left eye is now worse than my right) and she checked to make sure the Plaquenil hadn’t caused any damage (it hadn’t).

But, she decided to dilate my pupils several hours ago, and they are still ginormous. That, truth be told, makes writing really difficult.

So, instead, I leave you with a video of a flash mob performance of “Safety Dance.” You’re welcome.

awesome blog by an awesome girl

My friend Beth has started/re-started her blog, but with a new moniker: Sticks, String and Side Effects (which I love, PS!). In her own words, here’s what it’s about:

These are the musings of a twenty-something North Carolina girl transplanted to the ‘burbs of DC. An archivist/transcriber by day and avid knitter/beginning spinner by nights and weekends, and doing it all living with SLE (Systemic Lupus Erythematosus), fibromyalgia, and major depressive disorder.

She’s got an awesome knitting post and one about living with chronic illness (which, for most of us, means taking several pills just to function).

So, what are you waiting for? Check it out!

counting down the days

I am more than ready for my upcoming rheumatologist appointment. So ready, in fact, that I had them move it back three days, from next Thursday to Monday because I wasn’t so sure I could make it the additional 96 hours or so. It’s amazing how quickly things can go from bad to worse; just last week, I was telling the Professor that there’s no point in moving my appointment back, as it wasn’t all that big a difference to push it back by just three days. Oh, how I long to go back to last week, when that was true.

I’m trying to figure out ways I can get across to her just how poorly I’ve been doing and how far I’ve fallen in terms of feeling halfway decent. The Professor is actually coming to this appointment, so I’ve tasked him with making sure I don’t make light of it and pretend everything’s more or less OK. I’m sure that will help. I was doing well for awhile in tracking my symptoms, but lately I’ve been forgetting. (Thanks, brain fog!)

I guess I’ve got a lot riding on this appointment. I’m not really sure where we’re going to go from here. I’ve tried most of the biologics out there, and the ones I haven’t tried are so brand new that I’m not so sure I want to be a guinea pig for them. My pops wants me to try Celebrex, which he’s apparently taking for lower back pain and is convinced it’s a panacea that will make everything better for me. I told him I’d bring it up with my rheumatologist, so I guess that’s one potential new avenue for me.

I just want to feel better. I’m not even shooting for great at the moment; I’d settle for simply not as bad as I’m doing right now. Once we clear this hurdle, though, I’m going to be gunning for awesome all over again.

(brain) fog’s rolling in

I was waiting for it and here it is, right on schedule: the inevitable crash following a long weekend with too much driving, too much working and too many obligations.

I was almost useless today at work. I sat and stared at a blank Word document for most of the day, hoping the blinking cursor would provide inspiration. (It didn’t.) I couldn’t hold a thought it my head for more than a few seconds and I forgot doing something within seconds of doing it—like putting my keys in my purse after taking them out of my car’s ignition. I listened to every song on my iPod twice because I couldn’t remember it the first time. I’m exhausted, cranky and fighting tremendous brain fog. Not even a square (or two) or Godiva milk chocolate and caramel could bring me out of it.

So, I’m settling in my Remy across my arms and Otis at my feet and watching a few episodes of The Big Bang Theory with the Professor and then hitting the hay early—and hoping I’ll feel better tomorrow.