The first few years I did relatively okay. "I" think. Sometimes the pain would get me. Going to the doctor didn't 'do' anything. Xrays to show the rods were still there. (Have I mentioned I hate that statement?) Physical Therapy and a few pain killers. Not alot of help. Ice and heat. Ice and heat. I couldn't lay in bed for more than a day because I swear my back gets weaker and its harder to get up. But I kept going. No one likes a whiner right?
Enter stage left--- Numbness in the center of my back. Just above the shoulders. Maybe a 2" square. Can't feel a thing. But boy do I feel the prickles and needles racing down my arms and into my palms. Or down my legs and into my feet. Pain days creeping up a little more often than I would have liked. But I kept busy living life. You gotta keep doing. No pain, no gain, and all that jazz. I loathe that statement as well. No pain, no gain. YOU try it buddy. Thats what I wanted to shout. I went thru alot of pain and the only thing I gained was frustration at the doctors and more pain for me.
I eventually stopped going to the specialist. His work was done. Nothing more he really wanted to do to help me. Found a couple good physical therapists to do what they could. And just went with whatever came with the day. But now I'm older. And its all becoming known. The future that no one told me about is here. I am finding that the area above and below my rods are breaking down. Call me a idiot but I never realised that would occur. I had the fix all surgery remember?
I went to my primary as long as I could. But as she was very nice their wasn't much she could do. Prescribe some anti inflammatories. Recommend ice and heat. The usual. So finally I went to a pain specialist. I went to their physical therapists and was shown different treatments to help. Like Laser Light Therapy. THAT my friends is a true wonder. If asked I would have scoffed and laughed at a 'light' making me feel better. But I am not laughing any longer because it worked! Muscles finally unbunched enough to let me breathe. Made me feel like melted butter for an hour. Such a nice respite. I just don't realize how tight I get. Even with muscle relaxers and anti inflamatories... I walk like a eighty year old grandma. I don't meet peoples eys in restaurants anymore. I don't need or want their pity.
Its frustrating to me. To hurt all the time. Not always my back either. My knees hurt so badly now that it almost over rides all my other aches. Almost. Neck, tailbone... Those are couple more areas. Crud even some days my elbows woud ache for no reason! Whats THAT about? But seriously, touch me and I'll flip out. The thought of people touching me is unfathomable. I keep everyone at a distance now. I have come to loathe hugs. Of course I do hug as necessary but I really try to be the initiator now instead of having them pull me down for one. I like to hug on my own terms and when I am braced for it. LOL! Sorry. But I am honest. Leave me alone in the bubble and I won't have to hurt you.
Turns out that not only do I have scoliosis with the herrington rods I've somehow wound up with Fibromyalgia. And chronic fatigue. The list goes on. I am sure if you follow this blog you'll hear all about it. LOL! Being diagnosed with Fibromyalgia was a shock. I'd never heard of it. Now I hear it all the time. I wish I understood the syndrome better. I can attest that it is real. And it affects everything. Its the most random illness I've ever heard of. No wonder its laughed at and not believable to those that don't have it. I'd have scoffed too. But the joke is on me ladies and gentlemen. And I am determined to have the last laugh. It might sidetrack me, but no way will I let it keep me down. Not for long anyway! I've got a family. A son that is my world. The pain will just have to keep pace. I say that. But in real life it does control me more than I'd like it too. So not fair to my kid and husband. Some days I manage it better than others. Thats all I can hope for. Keep the dragon lady to little puffs of smoke. So thats it for today. Just a bit more rambling. Pain today is at a 3 and heading to a 4 in a hurry. So I must go stretch and try to hamper it. Good night ya'll.
Friday, January 31, 2014
Thursday, January 30, 2014
Fusion
Fast forward to August 31st 1997. I am carefully painting my toes for the last time. In a 'normal' way at least. This sounds ridiculous to those that haven't been limited by bracing or fusion, I know. But bear with me here for a second. I wore that brace for 23 hours a day for 4 years and then transitioned out of it. Had what 2-3 years of freedom only to be told it didn't work? Talk about crushing! Anger. Sadness. I ran a whole heap of emotions that day when I was told my spine kept moving. Seemed like it was all for nothing. Then the doctor tells mom and I that my torso is twisting. It was going to hamper my breathing further. Cut into my lungs. What did we know? The doctor knows best right? I had no internet to refer to. I didn't have other cases to follow up on or ask questions. We did what he said must be done.
So back to painting my toes. I do this (1) to steady my nerves. I am scared of tomorrows surgery. And (2) the act of being able to bend and still paint them was huge. I can't really explain it. But knowing I would no longer be able to do it that way was significant to me. But after a few minutes the radio announces that Princess Di has been killed in a car accident. What does this have to do with anything? I don't really know. But it made everything a bit easier. I still had life. It was just a surgery. Kind of put things in perspective I guess. And it was her funeral and every other story about her that I watched from my hospital bed that week. So if you ask me when I had my surgery my answer is always "when did Princess Dianna die?"
I begged, begged, and begged my doctor not to staple me. I was so scared of staples. So he stitched me up and taped me. Dear lord! I still cringe and want to cry remembering my grandma having to peel that tape off a week or so later. She was the only one that had the patience and did it gently. Everyone else was trying the 'bandaid' method. If ever you are in the same position, do NOT tear them off. It is NOT the better way. Trust me.
They had me up and walking the very next morning. I will not lie to you. It wasn't the easist thing to do. But I did it. Pushing myself to walk farther than they said so I could get out of there and go home. The nurses were horrid. One night the damn lady pushed the wrong button and I literally slid out of bed. I cry at that memory. That was alot to endure. But you do. You endure. You have no choice not to. They will pull the drainage tubes out. It feels like you are being stabbed and then a hot rush of fluid. I think I had two tubes. If there were more, I blocked it out. The only good thing I can tell you about that is that its over quickly.
My surgeon was good. The herrington rods he installed are still 'in there.' Thats what I'm always told anyways. But the thing about this guy is that he has no bedside manner. No after care at all. Its in there and you are on your merry way. Which is bullshit. Its like if you have issues, he doesn't want to hear about it because he takes it that his operation was sub par or something. Over the years it has driven me to really not like this man. Yes he's talented. Yes I'd go thru back surgery with him again because he is good. But now I know I cannot count on him for after care. And I won't get the whole truth from him either. The thing I find the most horrifying and unforgivable is there was no warning of the future. Nothing about the future good or bad. I just 'assumed' that the surgery would be a good thing. Breathing is a good thing right? Its not like I had a choice. With my curvature it would have had to have been done. But could I have stalled by a year or two? I will never know. And thats why I am starting this blog now. To tell my tale. So you don't travel necessarily down the same road I did. Or if you are, you have a friend to help guide you, grab your hand, pull you along.
Why now? Because I'm ready. Like I said before, the internet wasn't available to me then. And where I had issues over the years, it hasn't been like it is now. NOW is the time that you need to hear my story. To follow my path. You might not have the same journey ahead of you. But you might pick up some tools that are useful to you along the way. This is the future he never told me about. Maybe it was just too new of a procedure and he didn't know. But I'll be honest with you. I am living it. And I can tell you this-- Be kind to your body after surgery. Not that I did anything super horrible. But I also didn't have it pointed out to me that whats above and below the rods works twice as hard and takes the brunt of it all now that you are fused. Maybe I should have known that. But I didn't. I thought I had the miracle fix and was good to go, relatively speaking.
So I will leave you with that today. If you have a fusion surgery, take extra special care of your body. Know that the othe parts of your body are taking on the work of what was fused. Now is not the time to try bungee jumping :) If you are going to do that, do that before your fused. Just sayin'.
So back to painting my toes. I do this (1) to steady my nerves. I am scared of tomorrows surgery. And (2) the act of being able to bend and still paint them was huge. I can't really explain it. But knowing I would no longer be able to do it that way was significant to me. But after a few minutes the radio announces that Princess Di has been killed in a car accident. What does this have to do with anything? I don't really know. But it made everything a bit easier. I still had life. It was just a surgery. Kind of put things in perspective I guess. And it was her funeral and every other story about her that I watched from my hospital bed that week. So if you ask me when I had my surgery my answer is always "when did Princess Dianna die?"
I begged, begged, and begged my doctor not to staple me. I was so scared of staples. So he stitched me up and taped me. Dear lord! I still cringe and want to cry remembering my grandma having to peel that tape off a week or so later. She was the only one that had the patience and did it gently. Everyone else was trying the 'bandaid' method. If ever you are in the same position, do NOT tear them off. It is NOT the better way. Trust me.
They had me up and walking the very next morning. I will not lie to you. It wasn't the easist thing to do. But I did it. Pushing myself to walk farther than they said so I could get out of there and go home. The nurses were horrid. One night the damn lady pushed the wrong button and I literally slid out of bed. I cry at that memory. That was alot to endure. But you do. You endure. You have no choice not to. They will pull the drainage tubes out. It feels like you are being stabbed and then a hot rush of fluid. I think I had two tubes. If there were more, I blocked it out. The only good thing I can tell you about that is that its over quickly.
My surgeon was good. The herrington rods he installed are still 'in there.' Thats what I'm always told anyways. But the thing about this guy is that he has no bedside manner. No after care at all. Its in there and you are on your merry way. Which is bullshit. Its like if you have issues, he doesn't want to hear about it because he takes it that his operation was sub par or something. Over the years it has driven me to really not like this man. Yes he's talented. Yes I'd go thru back surgery with him again because he is good. But now I know I cannot count on him for after care. And I won't get the whole truth from him either. The thing I find the most horrifying and unforgivable is there was no warning of the future. Nothing about the future good or bad. I just 'assumed' that the surgery would be a good thing. Breathing is a good thing right? Its not like I had a choice. With my curvature it would have had to have been done. But could I have stalled by a year or two? I will never know. And thats why I am starting this blog now. To tell my tale. So you don't travel necessarily down the same road I did. Or if you are, you have a friend to help guide you, grab your hand, pull you along.
Why now? Because I'm ready. Like I said before, the internet wasn't available to me then. And where I had issues over the years, it hasn't been like it is now. NOW is the time that you need to hear my story. To follow my path. You might not have the same journey ahead of you. But you might pick up some tools that are useful to you along the way. This is the future he never told me about. Maybe it was just too new of a procedure and he didn't know. But I'll be honest with you. I am living it. And I can tell you this-- Be kind to your body after surgery. Not that I did anything super horrible. But I also didn't have it pointed out to me that whats above and below the rods works twice as hard and takes the brunt of it all now that you are fused. Maybe I should have known that. But I didn't. I thought I had the miracle fix and was good to go, relatively speaking.
So I will leave you with that today. If you have a fusion surgery, take extra special care of your body. Know that the othe parts of your body are taking on the work of what was fused. Now is not the time to try bungee jumping :) If you are going to do that, do that before your fused. Just sayin'.
Wednesday, January 29, 2014
Getting Braced
As with most adolescents the scoli story starts with that test they do at school. Bend over and touch your toes. Move on to the next. Only I didn't get to move on. It was more bending over and touching my toes as more and more people came to look at my spine. Little tingles in my belly began but I soon was better when I got to 'move on' to the next health station. But by the end of the day I had a note for my mom to come in to the health office the next day. That was just the start of it. From then on it was doctor appointments, xrays, etc. If your here, you most likely have gone thru it and know exactly what I am talking about.
Then the day you finally get that damn brace you were fitted for. Say goodbye to the life you had. Its over. Everything is different. In that one moment, it all changed for me. This tight yet bulky hunk of plastic took so much. Unless you've been in one, don't judge. And yes, I know people have it worse. But when you are going thru it, it IS the worst. Petty thoughts but they are honest. Hadn't even exited the office when my mom points out the lady that has the brace where it goes up in a ring and they have screws in her head. It could be worse I am reminded. I know. I know. But it was plenty bad as it was. Go out to the car and try hard to hold back the tears. Mom not saying anything either because she's trying to keep it together. BAM! Fudge! Just smacked the crap out of my head getting in the car. Yeah dumbass, you can't bend remember? Augh. That took some getting used to. And to be honest, I still smack my head from time to time.
Got home and my mom left immediately. Little did I know how hard it was for HER to hold it together. Absorbed in my own nightmare I completely lost it. Took off the brace and literally threw it across the room and into the tv. So unlike the timid, shy, quiet, good girl that I was. Cry, scream, lashing out. I was lost, mad, and confused. How could this be? Why me? And all that jazz. Shit. Mom was coming home. How in the heck was I suppose to get that damn thing back on? Oops. Didn't think about that one. :)
Like I said. Everything changed. Clothes no longer fit. A whole wardrobe needed to be purchased to fit over the brace. We didn't have a lot of money and so I got off brand whatevers that fit. Which added to the horror of having a brace. At that horrible age where appearance matters, I was the ugly ill dressed kid. I expected to be laughed at and made fun of. And I did. A bit. But I lived through it. I had some good friends. Thank you God for that.
Other changes that were obvious right away were change in diet. I couldn't even eat an apple without being stuffed and sore. The brace binding me so tight. Even my breathing was different. And sleeping on my stomach? Over! I can't even tell you how clumsy I became. My balance completely thrown off. Thankfully the brace covered my hips because I constantly ran into corners or edges of things. Graceful I was not. PE was killer. I had the teacher from hell itself. Situps, running the mile, the burns and bruises I got was pure torture. I do not remember that teacher fondly. If you have someone in your life wearing a brace, give them a break. The road they are traveling is not an easy one.
That's a good intro to how getting a brace for the first time goes, right? Next post will be about surgery. Just a few quick stories to bring you to the here and now.
Then the day you finally get that damn brace you were fitted for. Say goodbye to the life you had. Its over. Everything is different. In that one moment, it all changed for me. This tight yet bulky hunk of plastic took so much. Unless you've been in one, don't judge. And yes, I know people have it worse. But when you are going thru it, it IS the worst. Petty thoughts but they are honest. Hadn't even exited the office when my mom points out the lady that has the brace where it goes up in a ring and they have screws in her head. It could be worse I am reminded. I know. I know. But it was plenty bad as it was. Go out to the car and try hard to hold back the tears. Mom not saying anything either because she's trying to keep it together. BAM! Fudge! Just smacked the crap out of my head getting in the car. Yeah dumbass, you can't bend remember? Augh. That took some getting used to. And to be honest, I still smack my head from time to time.
Got home and my mom left immediately. Little did I know how hard it was for HER to hold it together. Absorbed in my own nightmare I completely lost it. Took off the brace and literally threw it across the room and into the tv. So unlike the timid, shy, quiet, good girl that I was. Cry, scream, lashing out. I was lost, mad, and confused. How could this be? Why me? And all that jazz. Shit. Mom was coming home. How in the heck was I suppose to get that damn thing back on? Oops. Didn't think about that one. :)
Like I said. Everything changed. Clothes no longer fit. A whole wardrobe needed to be purchased to fit over the brace. We didn't have a lot of money and so I got off brand whatevers that fit. Which added to the horror of having a brace. At that horrible age where appearance matters, I was the ugly ill dressed kid. I expected to be laughed at and made fun of. And I did. A bit. But I lived through it. I had some good friends. Thank you God for that.
Other changes that were obvious right away were change in diet. I couldn't even eat an apple without being stuffed and sore. The brace binding me so tight. Even my breathing was different. And sleeping on my stomach? Over! I can't even tell you how clumsy I became. My balance completely thrown off. Thankfully the brace covered my hips because I constantly ran into corners or edges of things. Graceful I was not. PE was killer. I had the teacher from hell itself. Situps, running the mile, the burns and bruises I got was pure torture. I do not remember that teacher fondly. If you have someone in your life wearing a brace, give them a break. The road they are traveling is not an easy one.
That's a good intro to how getting a brace for the first time goes, right? Next post will be about surgery. Just a few quick stories to bring you to the here and now.
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