Saturday, July 31, 2010


Saturday, July 31, 2010

I've noticed that several of the bloggers of SIS have blogged about what's going on in their lives. Well I guess now it's my turn. I'll try to keep it short and to the point, and hopefully after I'm done you will read it all the way to the end, and out of the kindness of your hearts, offer me some advice which I may or may not take.

I was born with a birth defect called Spina Bifida, which is the most commonly occurring birth defect. Most babies born with it will end up permanently in a wheelchair. I was not one of those babies. I took my first steps when I was four and have been walking ever since. More like waddling, I would say, but it got me to where I needed to go. I played youth soccer for a year in my teens, and that was the pinnacle of my body's strength and stamina.

During the years that I went through puberty, I developed scoliosis, which is a side to side curvature of the upper spine, and lordosis, which is a front to back curvature of the lower spine. My right hip, which was malformed when I was born, slowly became arthritic. The curvatures of my spine stopped just short of the point where surgery would have been necessary. The past several years I have been walking with a cane, and for longer distances or when a lot of standing is involved I do have a wheelchair I use. Using the chair for long periods of time causes my shoulders and upper back to ache.

Fast forward to now. Every day is a crap shoot, and I never know what part of my body is going to hurt or how badly. I have very little feeling in my feet, which makes it easy for me to trip and fall on things like doorways or table legs or something of the like. There's nothing like tripping and falling to magnify the pain you already feel.

The way I see it, I have two choices. Try to ignore the pain and get as much accomplished as possible, which might cause more pain. Or take the meds I have for pain and get loopy and not accomplish much.  I've done both and neither is a very good solution. It's getting very depressing for me and frustrating for my wife, because there's very little that she can realistically do to help.

I guess that's pretty much all you need to know. Some of you don't really know me that well, but I'd still appreciate any advice you could give me. Thanks.


Elle J Rossi said...


To say that sucks is the understatement of the year. I hope through all this you hold your head high because you have beat so many odds and continue to do so. You are mighty, strong and proud. I'm going to offer up a few suggestions and questions. You may have already tried these or I maybe some aren't even an option. But for what it's worth, here's my 2 cents:

Is there anything surgically than can be done to help?

Could you take half dose meds to relieve some pain but still allow you to function mentally?


Hypnosis? (I stole that idea from something Bren said to me earlier)

Meditation? (I'm not minimizing, just throwing out ideas)

I know that athletes use hot tub/whirlpool therapy. Would that help?

So those are my possible ideas. I hope today is a good day. And if you haven't already, may I suggest blinging out your cane? Have Wendy do it for you, she's got great style!

SIS Barb aka Elle J Rossi

Mary Stella said...

Krys, sending hugs, which won't do as much as pain meds, unfortunately.

I'm with Barb in asking if you've also looked into other "alternative" therapies. Acupuncture, acupressure, tai chi for balance and flexibility, biofeedback, and other modalities are proven ways to help manage/reduce pain and increase mobility. I don't know what combination will work in your case, but I urge you to at least investigate their possibilities.

SIS BJ said...

Hi Krys,

Sending hugs your way.

Barb took the words right out of my mouth. I will have to do some research on Spina Bifida to see if there are any other suggestoins to give.

Love and Bright Blessings, SIS BJ

Sisters-in-Sync said...


A few weeks ago I said I would not say anything nice about you for the rest of the year. I guess I lied. I just want to say how much I admire you. I've known you for...let's just say a whole lot of years, and I knew most of these things about you, and it all this time I've never really heard you complain. You are courageous and strong and before my skin starts to blister, I'll stop at that.

Now for your remedy...

1 shot tequila
2 shots snake bike
3 bottles of merlot

AAAHHHHHHHHH that should do it. Oh, but you said you wanted to accomplish something...

I'll need to do some research too. But maybe try cutting the pain meds in half, like Barb suggested. Our brother wears a pain patch and then takes pain meds for break through pain. Maybe that would work.

I'm so glad you felt comfortable enough with everyone here at SIS to open up and ask our opinions. I hope we can help!

And if Wendy does "bling out" your cane, I want to help.
SIS Bren

Krys said...

Thanks everyone!!

This is what happens when I get on the computer after taking pain meds. I almost can't believe I wrote that. I'm usually the last person in the world that opens up about themselves. Let's pretend that this never happened, okay? I have a reputation to uphold *wink*

My cane hasn't been blinged out yet, and yes you can help.

As for your wonderful suggestions, let me try to tackle them one at a time. Surgery isn't an option for anything except my hip being replaced, but it would mean having surgery about every 10 years or so to replace the replacement. I've tried hypnosis and meditation, and I do take a lot of hot baths. Good thing I like water. I have to say I like the "tequila-snakebite-merlot" therapy.....

I'm still tinkering around with the meds to see if I can strike some sort of happy medium. I'm planning on using the swimming pool at our apartments a lot more than I have. I've been to physical therapy more times than I can count, and I have a TENS unit, which is basically an electrical stimulation contraption. I also use pain patches and a shiatsu massage cushion.

I think I can keep things manageable if I can manage to go more than a few days without tripping and falling over something. I seem to be my own worst enemy when it comes to that...I just thought of something. I know how to take care of that! Oh man, why didn't I think of this sooner?


Tori Lennox said...

Hugs!!! I have my share of health problems, so I can totally sympathize, though mine aren't as severe as yours. Everything I would have come up with Barb already mentioned.

Beth Citotta said...

Like Tori.. Hugs!!! And repeating others, though wisely I think... Acupuncture, acupressure, tai chi for balance and flexibility?

Everytime I time to comment it stimps me. Arghh!

SIS beth

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