Living with Scoliosis. Share the highs and lows of your life and how you cope with Scoliosis. This blog is dedicated to Scoliosis patients worldwide, we have a few authors who will also bring you information from the world of Scoliosis. We will discuss pain relief, surgery, bracing, adolescent and adult scoliosis. I am a patient with a Harrington Rod, I am post surgery 20 years (2009), I like to share my Scoliosis ups and downs with you.
"She was just calling to make sure you're not dead. We told her you weren't. She seemed pretty happy."
As some of you may remember me mentioning, I'm currently a college student in Lethbridge, Alberta (that would be in Canada for those of you not in the 'know.) And I am proud to announce that just a few days ago the town of Sundry, also in Alberta, was named the coldest place in the world. That's right. The single coldest place in the world. Ahead of both poles and Russia. You may be wondering if that has any effect on Lethbridge and I can tell you now, without a shadow of a doubt, that yes, yes it does.
And what do insanely cold temperatures do to a fused/arthritic spine? Make it hurt. The phrase 'tearing my spine out with a rusty hook' is used perhaps a bit too frequently by myself, but I can say without hesitation now that I have officially reached that level. The hook is out, the bathroom prepped, the roommates warned. Don't try to stop me because I've lost my mind and this is the only solution.
Oh, also drugs. Drugs are also a solution.
So, for the last two weeks essentially, I've been under self-imposed house arrest. Not because I was lazy or weak or didn't have the courage to go outside and face the -30 degree weather plus wind chill, but because I had reached a new level of sore that I imagine is only experienced when one has either done something really terrible and is being punished by some higher power (lets say, for example, you somehow managed to get your hands on two adorable puppies, some asbestos, and thirteen hand grenades. That sort of thing that requires punishment), or, alternately, you have an arthritic spine. Fortunately for me it is the latter. Or would that be unfortunately? At this point I'm so doped up I'm not even sure. All I know for certain is that I have a test tomorrow for a class that I haven't been to in two weeks.
Why am I not studying now? Because I felt the need for some therapeutic blogging, and also because something was mentioned on the 'How to Look Good Twisted' facebook page that I absolutely must address before I forget about it. Here is goes...
Acknowledge, for a moment, that the art of letter writing is dead. Very dead. So dead, in fact, it has begun to release a funny smell from the deep freeze in the basement and should probably be dealt with before your folks come visit for the holidays and wonder where Steve, your boyfriend- I mean, before they wonder where the art of letter writing has gone. It is that much dead, and I think we can all agree, that is about as dead as something can become before it is resurrected and then killed again.
We rely on emails or text messages (I have no time for cell phones and don't own one thank you very much. I'm certainly not going to risk getting a tumor in my head just so someone can say "omg, wut a day!!11 totally syked 4 clubs 2nite!!!!111") and with those as our primary forms of communication, we've gotten lazy. It's so easy to call or email a person that the are of communication itself is laying on the bag of frozen peas right underneath the are of writing letters.
However, there is one thing that remains absolutely certain. Hospitals = get well soon cards. I don't know about the rest of you but I have two shoeboxes FILLED to the brim with 'Get Well Soon' cards (or GWS's as I shall refer to them from this point on) plus an epic GWS poster that my grade 8 classmates made for me when I went in for surgery the first time. The fact of the matter is medical adventures seem to be the only reason people both to go out and buy stamps these days, and those that do really aren't aware of the impact these cards can have on those of us who are spending our isolated days in the hospital bed counting ceiling tiles and calculating the square footage of the room in our heads.
We've got a nice little community going here, thanks to Simone, and because of the prevalence of scoliosis, it is constantly growing and there is always someone getting ready for another surgery. Now, not all of us have a grade 8 class willing to make an epic poster with multi-coloured GWS messages splattered all over it, heck, sometimes we don't even have a familial support system to hold our hands during the hard days. The one thing that we all have, without a doubt, is each other and our shared experiences as a group.
So I propose a GWS card program (which may or may not be a lovely excuse for pen-pal letter exchanges!) I don't know about you, but I'm okay spending three or four dollars on a GWS card and sending it across the world, knowing that it might just brighten one of your days (and I choose really funny cards, so they better make you split your stitches!) Because we're such a tight-knit community, we should be able and willing to spend a couple dollars and a few minutes to send out a card to someone we've never met, all in an effort to brighten their day. This act, perhaps unimportant to some of you, can be vital to others, especially those who are experiencing their first surgery, or are particularly younger than the rest of us.
Now I haven't ironed out all the details yet, but I'm willing to take charge of this to see it happen. Those who are going under and hoping for GWS cards supply the rest of us with addresses (home ideally, although I can understand that's a bit unnerving for some of you, in which case emails could be an acceptable replacement), and leave the rest up to us. There's something delightful about receiving such a card and knowing that, at least for a moment, you and concern for you was the sole thought in the sender's mind.
Ideally I'm hoping we'll run this through the Facebook page, simply to ensure security, seeing as how any average joe can read the blog, but one must sign up for FB. The sender may or may not supply a return address if they choose. Like I said before, it would be a good excuse for a pen-pal project. Alternately we could also look at a card chain, where I would buy one big card, write a note in it, send it along to the next person who writes another note and then sends it along to the next person, and so on and so forth, until it reaches its destination! There are many ways to go about it, and I think it's something we as a community ought to consider. I know I value each and every one of the messages I've received over the course of my surgery. Specifically the one from a dear friend in high school (story time!)
It was our graduating year and I had to have a surgery over Christmas, a right thorocoplasty, plus hardware removal. It was fairly average, all things considered. Before I left I got homework from my English teacher, who piled me up with books to read while I was in the hospital; homework from the english lit teacher, who had to approve of said books (and then had to deal with me having a panic attack and break down); said goodbye to my friends and went on my merry way.
Because we were still in BC at the time, and my surgery would be in Calgary, Alberta, my recovery would be in Red Deer, about an hour and a half away from Calgary, where my grandparents live. I wouldn't even be home for the holidays to see my friends, and considering it would be probably the last time we'd all be together, I was a little disheartened.
For those of you that don't know, a thorocoplasty (spelling is probably off. I'm doing it phonetic-style) is where they cut through ribs and press them down to decrease the infamous 'hump' that comes along with scoliosis. The major worry during it is puncturing of the lung. It's fairly common, but needs to be carefully monitored. I went into the surgery knowing that I would be waking up and taken to intensive care, just to ensure my lungs were cooperating. And heck, I was getting driven around in a hospital grade steel carriage; what better way to travel when you're half unconscious and drugged out of your mind?
So the surgery happens, I wake up in post-op, successfully wiggle my toes as I had three times previously, and was taken to intensive care. I wasn't there long before a nurse came in and handed me a piece of paper. I was too doped up to read so she relayed the message to me. This friend, my best friend really, had called, from a different province, during school hours, from a school phone, to find out what had happened and if everything was okay.
"She said she was checking to make sure you were alive. We told her you were, but obviously we couldn't say anything else."
And all the paper said, this little square of paper, was "8:30 am. Kathleen - Cindal says Hi!"
I still have that little square on the wall beside my bed back home. I can't ever express the importance of that to me. That someone would go out of their way to do what must have seemed like so little to them, but so major to me. I will forever treasure that paper because it reminds me no matter how miserable I feel because of the cold, or arthritis, or whatever, it is the little show of love that brightens your whole day.
During my fifth surgery, also in winter, mom and I had finally moved to Alberta. Calgary was pretty much snowed in, and my best friend in Red Deer was going to drive down to visit me. He didn't end up doing it because the roads were so bad, but when I finally saw in back at home he had a giant teddy bear waiting for me (and a very gentle hug). The same with my other best friend (whom I now live with in Lethbridge), she couldn't come to visit because of the roads, so she called and got to listen to me in my drugged up state talking about whatever, I don't know, I imagine it was fairly amusing for her.
The point, my friends, is the simplest example of love changes your whole outlook of your life at that moment. And I think we could all use that once in a while.
PS: I should probably study for that test now, huh?
I was writing on my website yesterday about Flavonoids and I quote "Many flavonoids, as in parsley, have a diuretic action; some as in licorice, are antispasmodic and anti inflammatory; others are antiseptic."
Anyway, my period started 2 days ago and I was feeling good about that because usually I have immense pain from my Scoliosis when my period comes and because it was day 2 and I had, had no pain I was feeling really happy about that and I wondered if that had anything to do with the licorice I had been eating the week leading up to my period?
The happy times didn't last long as last night the pain was soooooo awful and I didn't know what to do with myself, shifting around in my seat, then standing up and walking around with my hands grasping my lower back, then the tears came, but I wasn't crying (if you know what I mean), the pain was so intense that water just started coming from my eyes, I am in too much pain to actually cry - that would jar my back too much…
Clothes shopping for people who have Scoliosis has always been an issue, either you hide away from the public or you let it all hang out, whichever one you are you are reminded that you have Scoliosis when you go to the shops for new clothes, majority of us come home depressed. Clothes shopping with Scoliosis is a constatnt reminder that we are more curvier than most!!!!
We have been discussing clothes and rib humps and scars on the group, and we have some very interesting views to clothes and Scoliosis.
Unfortunately, there are many Scoliosis patients out there who are not quite as aggressive as myself as I tend to run with the attitude of "who cares what others think of me, I have Scoliosis, so what!", I wear up to date fashion and I don't let my Scoliosis dictate what I can and cannot wear to some extents, of course I don't wear what I am uncomfortable in or what does not suit me but I certainly will not shy away from going to the beach because of my lopsided-ness, …
I have been receiving many emails about memory foam and whether it actually works.
I will let you into the secrets of my good night's sleep and what I think about memory foam and why it has helped me so much, for starters I no longer sleep with Valium, I simply don't need it.
The memory foam that I sleep on was invented by a guy in the UK, who, unfortunately does not have the dollars behind him that his competitors like Tempur do, therefore he has not been as recognised as a brand name like he should have been - it's all down to money, and what a shame that is.
I have heard great reports about Tempur mattresses and I have tried one, however, I have to say that their product is not as wonderful as the OroMed Sleep System that I use - you understand that this is MY personal opinion and I am entitled to have one ;)
I started my quest for memory foam 4 years ago, I just couldn't sleep and was getting beyond my tether of walking around the house at night in tears because I was …