Ehlers-Danlos mama trying not to twist things up *too* much!

Friday, January 21, 2011

Good Bones, Bad Bones and My Beef with Winter

I saw my ortho doc on Tuesday for the monthly shoulder check. In the beginning, I think he was just waiting for something to go wrong, but now 3 months after surgery, my shoulder is starting to feel better and the bones still look good. This time he also wanted to get x-rays of my ankle, which has been causing me a great deal of pain lately.

General verdict was that although the ankle x-rays looked good, bone-wise, the instability and pain aren't just going to go away. Fusion is still my best bet, as the one orthopedic procedure I've been satisfied with throughout all of this is my shoulder fusion. I told him I wanted at least six months to think about it; he offered to get me a better ankle brace while I figure it all out.

If only things could ever go as planned.

Winter is here in New England. On Tuesday, a sudden dip in temperature turned local roads and sidewalks into sheer ice. Unwilling to risk life, limb or child, I was quite hermetic between mid-day Tuesday and Thursday afternoon, when I had to drop my car off at the dealership for some repairs. By that point, most of the ice and snow seemed less hazardous—or so I thought until I slipped on the way out of the auto repair shop. I landed in a heap on my “good” knee, twisting my “bad” ankle beneath me. Despite being a little banged up, I felt less hurt than I was mortified and quickly regained my composure in order to right myself.

Getting up was worse than falling. As soon as I stepped on my ankle, I could tell it was bad, even through my snow boots. I usually have pain, but enough stability to walk in a brace without dislocating. Now it seemed, my ankle was clunking in and out with each step. (Cam was so disgusted by the noise that she all but forbade me to walk.) When I did walk on it, I immediately saw stars.

Back to ortho doc. (2 appts in 4 days: not exactly the sort of record I'm going for.) His words: “I've never seen anything like this.” With EDS, I get that a lot. Nothing fractured or dislocated, but Tuesday's “good looking bones” now had remarkably more joint space. Not surprising that the bones were sliding around much more than usual. Ortho doc's hope is that the fall caused some bleeding and swelling which temporarily worsened things; my fear is that I'm going to be stuck this way until the fusion, which I didn't want to schedule hastily.

For now I'm back in a walking boot with a rocker sole, so at least the audible clunking and associated waves of nausea have subsided. My fear of requiring emergency surgery, at least, was allayed. The boot allows me to walk and keep up with life, a privilege I don't take lightly.

Really hoping that the snow/ice/freezing part of winter is over. Please?

Monday, January 10, 2011

Staying Well When Life Goes Wrong

People who know me in real life would probably laugh at the thought of me writing a feel-good blog post. I'm not a negative person, per se. I'm just, well...intense. Passionate.  A hell raiser. I'd like to think of myself as injustice intolerant.
Recently, it seems many people I know just haven't had a break--whether their troubles are their own health, that of a loved one, financial difficulties, grief and loss issues or some combination. Beyond that, there have been a number of devastating events reported on the local, national and international level. Here in New England, it's bitterly cold, which only seems to magnify the pain.
But while I could probably give a million reasons NOT to be happy, I'd actually like to change focus--not to the million reasons to be happy, but to the importance of taking care of yourself when nothing seems to go right.
I know, I know--you've heard it before. It sounds hokey. And the fact of the matter is, I'm no expert on the subject of self-care, self-soothing, etc. You could Google either of those terms and probably get lots more ideas than I will provide. But here's a reminder to do it! Do something nice for YOU. Do something that makes you feel better and be ok with that.
Want ideas from a twisted sister? Fine. These things help me:
·         curling up on the couch with my Snuggie and watching something completely mindless
·         taking a bath
·         playing around with photos on Picnik
·         drinking coffee, sometimes even flavored
·         looking through/organizing old photos
·         sleeping
·         reading the Onion, finding articles with stumbleupon
·         finding new blogs, feeds to read
·         buying new socks--especially patterned!

Again, find something for YOU. Find something that makes you feel better and schedule it into your day. Make yourself a priority, even if only for 15 minutes. And if you're able to get physical activity, I'd highly recommend it. I was a competitive swimmer for many years and being in the pool improved my mood like nothing else. And even after that, before my body really couldn’t hack it, I felt better after getting out of the house and running. Or walking. Or hobbling.

Also, for those of you with chronic pain or fatigue, I cannot express how important it is to maintain human contact. As hard as it can be, especially on a bad day, to pick up the phone and call a friend or a relative, it can make such a difference. I love spending time with my best friend because it helps me forget about everything else in life for a while and just feel normal. Even if you don't feel like calling anyone you know, make a point to go out in the world. Smile at a stranger. We're all in this mess together.

When people don't seem to understand us or our children or our situation, it hurts. Sometimes it's easier to avoid talking about the difficult topics than it is to confront the people in our lives who mean well but just don't get it. (This sort of gets into that whole, "But you don't look sick..." issue, which I’m also not the authority on.) It takes time. I was diagnosed with EDS 11 years ago and it's still a work in progress. I'd like to believe that people have the best intentions. I know that my own independence (and stubborness, and shame...) is often what forces people to keep their distance. I also know that when people are so upset by a situation (e.g. the death of a child or the illness of a once-strong adult), they react in ways that seem counterintuitive: by shying away rather than embracing, by remaining silent instead of comforting. Humans are odd, imperfect creatures.

So again...if you're struggling right now for any reason, please know that you're not alone. Take care of yourself, allow yourself to be cared for and if the burden is too much ASK FOR HELP. It's ok. It doesn’t make you weak to need someone. It makes you human.

I don’t know why I felt so compelled to write this instead of sleeping, but I really hope that someone reads it at the right time.

Hang in there and keep raising hell!! You’re all in my thoughts.

Cyber-hugs from the non-hugger,

After re-reading, I thought I should also note:
If you [or someone you know] are really at your end and feeling as though you may hurt yourself or someone else, get help NOW. A mental health emergency should be treated like any medical emergency. Call 911, emergency services or get to an ER or mental health emergency service location. Need to talk to someone first? In the US, the National Suicide Prevention Lifeline is 1-800-273-TALK (8255). I'd like to think that life's worth living, despite all the hard stuff, but sometimes it takes a little help to get there.

Thursday, January 6, 2011

Still Twisted

Sometime in November, my laptop decided it hated me. As in, I shut it off one night and it decided it just didn't want to work AT ALL the next morning. I just got it back from Dell with no indication as to what was wrong in the first place, but it's working again, so here I am.

(I wish I could have slept through 8 weeks!)

Actually, the "Holiday Season" was fairly pleasant! There's nothing like Christmas with 4 little kids. I had more than a fair share of painful, rotten days in November and December, but they were improved by cuddling on the couch and watching Christmas movies with my kiddos. On the better days, we did all the things we set out to do this year. Cam and Old Boy decorated the house with Christmas lights, we went to a number of events, made cookies, decorate gingerbread houses, got a real tree...Good stuff. This was the first year without Atiyyah that things didn't feel soul-crushing, the first year in this house and hopefully the first of many more good things! Now that Christmas and New Years are over, we're headed into New England's deep mid-winter of frozen gloom, but I'm glad to have the laptop back and to re-connect with my "friends in the box."

I received a Snuggie and slippers for Christmas, so my couch days are now a bit more comfortable. The Snuggie was sort of a gag gift from Cam, but after I let her borrow it one night, she went out and bought one for herself. I would highly recommend it for anyone who's spending as much time on the couch as I am these days. To be fair, there's not a lot to really is just a "blanket with sleeves". And blanket is a bit of an over-exaggeration. It's a single layer of fleece with sleeves and a pocket or two. If I didn't need to spend so much time being horizontal, I could certainly sew one. "I bet I could improve it too!"--bonus points if you can guess my favorite movie from that line, without Google-- But alas, EDS has got me down these days, and I'm thankful for my pre-fab Snuggie.

Other than the couch and the Snuggie...thinking about a few surgeries. Fun, right?! But, seriously, I need an ankle fusion, as my left ankle is a dislocating disaster. I went through a big made-up surgery for it last year, but it showed early signs of failure that have progressed to constant pain despite non-operative treatment. Cam is starting classes with the hope of changing careers and the Puggle has some invasive procedures/surgery ahead, so we're thinking late August 2011, which will give us some time to prepare, get through the Puggle's struggles and for me to be off crutches by next winter.

But for now, I'm more concerned with the day-to-day than with anything 7 months away--major surgery or not. The Poodle is now a walking maniac, the Puggle is becoming more playful, Monster and Old Boy are enjoying snow days and hot chocolate and wintery things while I seriously consider moving to a more temperate climate.

I hope you're all comfortable in your bodies in your life. And to quote the first line of my favorite Christmas letter this year, "I hope this finds you well and if not, that 2011 is a better year for you!"