Living with Scoliosis

My body may bend,

but my spirit will not break.

8.10.11 Agent Orange- 50th year Anniversary

In 1961 the US began aerial spraying of Agent Orange during Operation Ranch Hand to denie guerrillas of their rural support base and food. Today there is over 500,000 people that were born with birth defects because of this, Vietnamese and children and grandchildren of US soldiers alike. My grandfather was a soldier affected by this and I am the grandchild that bears the scars. Please help me pay tribute to those of us affected.

6.23.2011 A month later

It’s been exactly a month since surgery and I currently feel better than I have in years. In fact, I have not lived this pain free since my first surgery which was 10 years ago. It’s been a long road though, and although I know that my journey through a life with scoliosis will never be over, I feel like for once the dark cloud I have been living under has lifted. I know that with this surgery I was given the gift of a fresh start and I intend to take full advantage of it.
My new scar is healing up nicely. I still have a couple of stitch ends that have not come out completely but other than that every thing is good. I missed my 2 week check up but being as how I was back to work and keeping up with my normal routine the week after surgery, Dr. A wasn’t to worried about seeing me. I go back on the 13th of July for a 6 week checkup and hopefully I will get to see X-rays on that day. I have yet to see what my remaining hardware looks like but I am very interested in seeing it. I’ll post pictures as soon as I see it.
Thanks to every one that has kept up with me and offered me support through this whole deal. I will never be able to tell you thank you enough.

5.30.2011 Is it suppose to be this easy?

I keep wondering if I am in some kind of dream. I keep thinking back to the last two surgeries and wondering how it is that I am feeling as well as I am. The fact that I am up running around, totally mobile with only a little bit of pain is almost baffling to me. I’m so ecstatic to have a fresh start though. I go back on the 8th for a check up with my doctor. I am really looking forward to showing him that I have continued to be a “rock star”.

5.25.2011 Walk in the Park

Finally it is done and over with and now I begin to wonder why I had so much anxiety about it at all. I learned a new lesson with this surgery though, it is all about your attitude. I made a decision when I went in that I was going to work as hard as I could and I was going to be up and out of there as fast as possible. I was up and walking in the first three hours.  They were going to release me yesterday honestly but I decided I needed one more today to get the rest of my bearings straight before I made the trip home though. This surgery, unlike the last two was a piece of cake. I went in happy and ready to fight and I came out of it happy. Funny, if they would not have changed my surgery date, today would have been the day of surgery. So really, after all of my worrying, changing it was a blessing in disguise. I am in a little pain but for the most part I am doing my best to mentally block it all out. Life is good! So for now, I am going to sit back and relax, wait for the healing to be done so I can work on concurring the next goal.. school!
5.23.2011 Ready…. Set….Go
Ready or not, in 5 & 1/2 hours ill be in my third surgery. Believe it or not this never gets easier but we are really hoping this will be the last time. My nerves are shot and the last thing I feel like doing is sleeping. I did my best to block the majority of my last surgeries memories but I’ve been having flashbacks all evening that scare the heck out of me. I’ve never been all that scared of hospitals or doctors but for some reason I can’t explain I’m having a whole lot of anxiety over tomorrow. Wish me luck on my last surgery. (Or so I hope, last surgery.) Sorry for any typos, blogging isn’t easy on my droid. :(

5.16.2011 O’ Great!, It’s you again…

That nervous anxious feeling is returning. Nine more days until I am on the chopping block and my nerves/stomach are not handling it very well today. Ever have one of those days when you would like nothing more than to crawl into bed and sleep the day away so you don’t have to remember for a little while what is fixing to happen? Yeah, well I am having one of those days today. I had a great weekend and I hardly thought about it but for some reason today is a little different. Maybe because the first conversation I had this morning brought me back down to earth and made me think about it? Yeah, that may have had something to do with it. This whole surgery process has left me feeling like I have been riding an emotional roller coaster for at least the last three months. I am so ready for the ride to stop!

5.11.2011 Next Step- SURGERY

I traveled back to Abq today to finish my pre-ops. That was… fun. (Sarcasm) ! Today went pretty good for the most part though. Other than when I got home tonight and took my shirt off I realized that the little rubber strip they tied on to my arm during blood draws was latex and I now have a little rash on my left arm. I even asked before they did it, “Oh no, I don’t think it is.”, Ha, yeah it was. And yes, I am allergic to latex. Weird, I know. I am just praying these next few weeks go by smoothly though and that I can continue to discipline myself to save up enough moola to last me until I can get back to work. I hope that this time will be the last time I ever have to deal with this. I realize it puts a strain on my family and friends and once again I can not tell you all how much I appreciate your support.

4.27.2011 Finally

We finally have a surgery date, May 25th. I will go in that morning at 6 am and will be in surgery by 7. We still do not know how it will all turn out though. The goal is at this time, to remove only the partial hardware but the doctor said the following could happen, if he goes in and sees any area that is not fused he will put in new hardware with screws or, if my spine is completely fused we will remove all hardware and leave it out IF he sees that the bottom half of my hardware looks like it is agitating any of the tissue or bone around it. He feels confident that my spine is fused from  looking at the CT but he said that when you have metal and do a CT that it sometimes leaves a glare making it harder to see small places that it may not be fused at. So really my surgery will be, “exploratory”and we won’t have answers as to what will be done until after it is done. I am happy to have a doctor that is confident and has my best interest as to no longer having pain but I can’t help but still be anxious not knowing exactly what is going to happen. I am stressed out beyond belief, even more so than I was before I walked in there. I am just praying at this point though that whatever ends up happening will leave me pain free so I can get on with my life. I would also like to take this opportunity to tell all of you that have been keeping up with my post and supporting me, and praying for me, Thank You! When all of this begins to weigh on me you have all been wonderful about giving me the little inspiration I need to get through this.  I love and appreciate all of you beyond words. I will be returning to Albuquerque on the 11th to begin the pre-op process. If all of that turns out ok, it’s a go.

4.26.2011 Like a bad hangover

Tomorrow is my birthday and “D day”, and I am not ready! When I say I’m not ready I mean that I am not ready for bad news. I am praying this can be fixed with just taking out partial hardware. My greatest fear though is starting over. My head is pounding, my heart is racing, and I feel like ralphing… again for the hundredth time. It’s feels like a bad hangover that I didn’t even have to self induce. Why did I say yes to seeing the doctor on my birthday?! (well maybe because they said if I didn’t take it I would have to wait until the end of May.) Seriously though, there are so many other cooler ways I could be spending my birthday. On another note though, I think I am beginning to pinpoint where all this anxiety is coming from, it’s the alone factor. I spend a pretty good chunk of my day alone and other than work I don’t have a whole lot to occupy my mind with. I’ve been doing nothing but worrying about what tomorrow will bring. I come home every night to a dog and two cats who don’t talk back and I worry some more. Then I lay in bed at night some times until 2 or 3 in the morning and worry. I’ve had my fair share of ups and downs, parents divorces, losing family, losing friends and my own divorce but they don’t quite add up to the stress I feel now. Sometimes I wish there was some one else here to talk too but then I wonder if I will ever find some one who is strong enough to stick next to me during times like this. Truth is, right now I feel lost and I don’t feel good about the place I am in. What I am hoping for though is that after this is all said and done with that I will finally begin to feel like a complete person again and begin working towards the things I am longing for. Every thing I want is so close I can almost touch it. I can almost see them handing me a degree at State, I can almost see a successful career, I can almost see an adoring husband and family. It’s a blurred vision right now but after tomorrow, I hope the picture begins to look a little bit clearer.

4.25.2011 And so it begins

My nerves have officially failed me. I woke up this morning at 4 am feeling very sick and the only thing running through my head was, two, two more days until we go and make a decision. Call me crazy, I want this surgery and the day of surgery I will probably be just fine. This whole waiting game that I have been playing is killer though. I just want to curl up into bed and pretend that it’s all over already. I am having hell preparing for Wednesday. Deep Breaths.

4.17.2011 Come on nerves, don’t fail me now!

Ten days from now I will be scheduling my surgery. I can feel dinner rising up just thinking about it. When it comes to making decisions like this I always have mixed feelings about it and the closer it gets to 4/27, the cloudier my thoughts are becoming. I know I have to do this, I know I want to do this because frankly, I do not want to continue to feel this much pain. The very thought of surgery is beginning to scare me though and I think a lot of the problem is that I have blocked out most of my memories from the last surgery. Literally blocked them out! I remember the morning of surgery, having a panic attack as they slid me on to the operating table and put the mask over my face and told me to breath, cussing (kind of) at a nurse because I woke up with the tube still down my throat, seeing my little sister crying when she saw me in ICU, a couple of fuzzy moments at Carrie Tingley and then, two weeks later I was sliding into my own bed at home, incredibly sore and tired with oxygen on and a brace cutting into my side. It is amazing to me how much of a painful memory the brain can actually block out.
With this next surgery I am on a mission to try and remember as much of it as I can. I have decided that I want to, “Document” all of it and by that I mean pictures. I want to see what every one else has to see. I want to remember all of it like I do from the first surgery. Mainly I want to do this because I am hoping that once I see it from a different perspective I can start understanding why it is that my parents, family, and friends worry about me the way they do. Sometimes I catch myself getting so frustrated when I get the, “You need to be more careful” speech. So I think it would be good for me to see what they see, because in all honesty, when it doesn’t hurt I do not even think about it. I do… or was doing dumb things all the time. Things that I realize now could have had a life altering outcome and I have got to get it through my head that maybe I am as fragile as people say I am. Maybe I shouldn’t ride horses, or rearrange my furniture alone, or dive off of stuff into the lake in the summer time. What I should be doing is taking care of myself so I can go back to school, get married again, stay healthy so one of these days my twisted little body can carry a child, and enjoy my life instead of putting my life on hold because of one moment when I wasn’t paying attention.

4.12.2011 Deep Breaths… you got this!

On April 27th I will be heading back to ABQ to begin the official planning process… I hope. CT’s are done and have been delivered to my Doctor. Now we play the waiting game until 4/27. By the way, I am changing my birthday. Last year I was signing divorce papers on my birthday, this year I am planning to be sliced and diced. Great… I guess it’s not that bad though. I guess there are worst ways I could be spending my birthdays. I am nervous though, more nervous than I think I have ever been. The best part of this whole deal though is that I have great friends and family backing me up. For those of you that continue to stick by my side, I thank you from the bottom of my heart. It makes it so much easier for me to get through each day knowing that I have such an awesome support group. It doesn’t matter if you have had 1 or 10 spinal surgeries, every one of them leaves this big weight hanging over you that you can’t help but feel like is going to drop on you at any moment.

3.9.2011 Dr. Visit

We came home from ABQ today and in all honesty, I was not ready to come back. Believe it or not, I could live there.
The doctors appointment went well but we still do not have any answers as to when I will have surgery or what we are going to do. We did rule out removing all hardware and not putting anything back in, which is a plus because I was so worried about it. What we are facing now is to either continue on with the plan to remove the hardware that is bothering me, or to remove all and start over again. If we start over, they will take out the harrington hooks and replace with screws which even my doctor said he is worried about doing because it is very difficult to put them in. We did not get any answers today though because my doctor is worried that my fusion still has not healed, or did not heal properly. So now, in order to determine where my fusion is I am going to have to do a CT scan at LCMC (which I am frustrated with because we should have done that months ago. )and then I will go back to ABQ so he can go over scans. Next appointment should be the decision making appointment and from there I will start all my pre-op stuff.  He also told me that no matter what we do it should not effect my lung capacity. Whoo… big relief.
I must say that I am very impressed with my new doctor and I am so glad I am in his hands finally. I think that we are finally getting some where, even though the process has really just begun at this point.  He did tell me that he agrees the hardware is loose. (Thank goodness, finally a doctor that is taking some time to check into things!)

3.8.2011 The key to change is to let go of fear- Rosanne Cash

Every thing is going to come down to the decision I make tomorrow. I feel like having a panic attack. I can’t breathe, I feel like throwing up and I swear I can hear a clock ticking. It’s beginning to really hit me that I will be making a decision tomorrow that will change my life because, if every thing goes as it should, after it’s all over with, I am going to have to start taking the drastic measures I have been waiting on for the past four years to begin changing my life. Finishing a degree, starting a family, all of the things I have wanted are so close now that I can almost reach out and touch them. I want so much for my life, a good job, a great family, being able to pay every bill on time, nice things. It’s mine for the taking once this is all over with. Am I scared of this surgery? Hell yes I am but, I am hoping that when this is done, real doors will begin to open for me. I wish that it was all over with already but unfortunately I realize that I am going to have to work extra hard at doing things right this time so I can get through this. I thank God for all of those I have supporting me. Without everyone, I do not know how I would get through this.

3.5.2011 Emotions Run High

I keep having these weird dreams about my upcoming surgery here lately. Dreams that wake me up in the middle of the night and make me wonder if I am doing the right thing. I know part of it is because I don’t have enough information on all of my options right now. My anxiety is becoming a little bit harder for me to control and every day I find myself so frustrated. Then I get the whole, “This is good, your getting it fixed!” statement from every one and I find myself thinking, “Yeah, if only it were that easy.” We thought it was going to be fixed the first time and even the second time. With this surgery though, I am afraid that more things are going to go wrong afterward. Usually I think of myself as a glass half full kind of person but right now I am feeling like more of a glass is half empty kind of person.

2.27.11 A whole new level of frustration.

Here lately I have found myself on an emotional roller coaster, unsure of how to feel about this upcoming surgery. For the first time ever, I can honestly say I am scared to death of having surgery. Maybe it’s that I miss my old doctor or that it’s me having to make this decision on my own. Whatever it is, I am having a hard time figuring this whole thing out. My stress level is currently at an all time high and I don’t know whether I feel like crying or laughing at any given moment. The part that has been bothering me the most here lately though is the fact that I feel like my back problems are always holding me back from something. Every time I get ready to leap, there they are again. Not that every time has been because of it, a lot of it has been my own terrible decision making skills. I’m just ready for a time when I can do all of the things I have been putting on hold for so long.

2.23.11 Third Times a Charm…
So… here is the scoop on my doctor’s appointment today. My doctor, Dr. Paterson has passed my case on to UNMH’s new specialist, Dr. Antony. (I think that’s his name anyways) I was told today that this is my decision at this point. I can either decide to live with it and start pain management (drugs etc.) or be sliced and diced and hope it works. So as of today we are going to start planning towards a third surgery. I had a little blood work done today to check the hardware for infection and in two weeks, on the 9th we will go back to start planning surgery. We have to weigh out options to either remove all of the hardware (which I think is a bad idea because after having hardware for almost 10 years I am not sure how my spine will react or if it’s strong enough), or we remove only the top portion of the hardware. We have a lot of questions to ask still though. For example, if we remove the top half and my spine is not completely fused is that going to hurt me, if it’s not fused and shifts will I lose lung capacity. Lung capacity is something that I already have a problem with and if it gets worse than it currently is carrying a baby one day would be difficult. I’m not gonna lie, I’m a little scared at this point. My other two surgeries were easy decisions, this one… not so much. Dr. Sherman, the doctor that did my first two surgeries is a straight to the point, this is what’s gonna happen doctor and he had a way of making this all feel like a cake walk. This time, it’s all riding on me and I’m hoping that I am making the right decision. I am looking at this whole thing thinking, I still have a lot of things to do and my back problems are holding me back but I realize at this point there is not a quick fix and I’m going to have to think really hard about this.

2.15.2011 Scoliosis: a medical condition that brings family and friends closer. Thanks for being my support Peeps!!

So I guess you could say I wasn’t born a normal kid, I was born with a few birth defects. When I was a baby, just a couple of weeks old, my parents realized that I was not able to open my hands all the way. How terrifying that had to have been for teenage parents.
I was born with a condition called camptodactyly. Camptodactyly is a medical conditon involving fixed flexion deformity. After years of wearing splints my right hand stretched out enough that almost all of my fingers on my right hand are straight except for my third finger. My left hand is a different story. I am only able to use my thumb and index finger. Even though my other three fingers still have movement I am not able to flex them out straight. After years of working with them we finally gave up. Although surgery to straighten them was an option we were warned that operating could damage nerves and if that were to happen I could lose all movement. That was obviously something none of us were willing to risk. To other people it’s not something noticeable and it’s pretty rare for someone to actually catch on to it.

I think that God just didnt want me flipping anyone off so he gave me crappy hands.
During one of my last hand appointments is when my hand specialist (Good Ol’ Dr. Omar. I wish I had a picture of him to show you guys. For most of my childhood I was scared to death of this guy. Mainly because he had caterpillar eyebrows and when he would wrinkle his forehead they looked like they were crawling. Don’t get me wrong, he was a nice guy but I always wondered if he noticed how I would end up mesmerized with his eyebrows. This may be the reason I pluck mine down as far as I can. I was always scared of growing Omar eyebrows. Anyways, back to my story…)   noticed that I was not able to stand up straight. My parents had always had an idea that something was wrong with my spine. During my childhood people were always telling me to sit up straight, to which I would reply, “I am!”  That appointment is when we began our journey through the world of congenital scoliosis. Congenital Scoliosis is a form of spine curvature that is caused by vertebral anomalies present at birth. If caught on time the effects can be reduced with braces, however, mine was not caught on time. Today, around 20 million people have scoliosis. Almost makes you wonder why it’s not as publicized as some other things are doesn’t it?
My journey began the year I turned 14. The summer before my freshman year in high school we made the decision to go into surgery. The purpose of the surgery was to stop the progression of my curvature. My spine was fused with a Harrington rod being put in place as. After the surgery I spent six months in a rigid (hard) brace. Being as young as I was, my road to recovery was fairly easy. I spent about a week in the hospital before they sent me home. My stubbornness for once was appreciated. There was no way I was going to stay down for a long period of time.
I spent the next few years living like a normal teenager, (minus sports of course). My specialist Dr. Sherman gave me the O.K. to do whatever I wanted, within reason. This may have been the worst thing he could have done, not that I wouldn’t have done whatever I wanted anyways… Which was how I landed myself in the O.R. for a second time. I started working for the Forest Service on a Y.C.C. crew the summer before my junior year. For the most part I was careful, not as careful as I should have been, but careful. (Ok, that’s a lie, scratch all of that.) Anyways I continued to work with the Forest Service until I went to college. Two weeks into school at NMSU a I began to realize that something was wrong. The pain became unbearable and finally I was forced to have to do something about it. I knew exactly when the event had happened (while working for the F.S.) that had broken the rod but at the time I didn’t say anything about it. I was hoping it was something that I could live through being as how at the time, we thought that my spine was fused all the way. Ha, wrong…
So, November of 2005 I went back into surgery for my second spinal fusion to replace the rods. This time instead of just one rod they put in three rods and twelve hooks. (My x-rays look like something you would see on, “ER” (that was an awesome show) or, “Grey’s Anatomy.”)  This time I was under much more pain then I was after the first surgery. I spent about two weeks in Carrie Tingley and I have pretty much blocked out most of my memories of it because that had to have been the worst two weeks of my life. I ended up with pneumonia and one of my lungs partially collapsed so I was sent home with an oxygen machine to keep my O2 stats up. Getting up was much harder than it was the time before and the pain this time was pretty much excruciating. After a few months I was back on my feet and preparing for another semester in college from afar. (Distance education is pretty cool.)
It has been six years and three months since my last surgery and once again complications with my hardware are showing up again. In April of 09′ I was sitting on the couch one night and when I went to get up I felt this strange little pop and then felt pressure up against my skin on the top left side of my back right next to my shoulder blade. I went to Mom’s to have her check it out and immediately we knew that there was something very wrong. The next morning we went in for x-rays at LCMC when Dr. Wolfal (Not exactly sure how to spell his name) confirmed that there was hardware loose. We then made plans to go back to UNM.
My long time specialist, Dr. Sherman had since retired and being that I had aged out of Carrie Tingley they sent me over to UNM. (This is where I get upset.) While there the Dr. and his “surgeon” told me that they couldn’t see anything and that there was nothing that they could really do other than shoot me up with some steroids. For the record, steroids hurt, they don’t do anything except burn and then numb the heck out of you, and they really aren’t good for you. If you can ever avoid being shot up with them, avoid it. They are useless in my opinion being as how the next day they had all worn off.
Which brings us to where we are now. Last week during our big snow storm I slipped and fell pretty hard. I had up until then, been living with the dislodged  rod pretty well but I can’t ignore the problem anymore. We have a real problem going on at this point. The pain is almost to the point of unbearable. For the last couple of mornings I have been waking up wanting to throw up because it hurts so bad. My left arm has been doing this weird numbing thing, If I raise my left hand over my head I feel nothing, like it’s been cut off. I asked my boyfriend to check out the rod the other day to see if the rod was pressing on my skin more than usual, to which he replied, “you have bruises on your back.”  yeah… that’s not suppose to happen, and my pain killers are making me sick.
I’m not trying to whine but I’m not sure how much more of this I can take! My appointment is on 2.23.11 and I am hoping for a positive outcome this time. What I am hoping for is that the rod that is the problem is truly not needed and we can look at ways to cut it out. That would be ideal because frankly I do not want this to happen again.

6.23.10 Scoliosis… the gift that keeps on giving!

Today was kind of ridiculous. I am pretty sure that even though I asked my list of questions, I left feeling more confused than I was when I walked in. So here is the 411… When I got there they took my x-rays back that were done in Lincoln County and compared them to x-rays that were taken at my last visit to Carrie Tingley in 2007. What they saw was basically nothing. So they send in this “surgeon” who is not my doctor to tell me that he doesn’t know what’s going on. He explained that my problem could possibly be the following, scar tissue has moved and it’s causing friction, the rod could be slightly off and rubbing the bone, or bursas have developed and could be causing friction. So, when he explains that he has no idea what is going on, I begin to throw a fit in my own little way and he goes and gets MY doctor to deal with me, Dr. Paterson. Now first I must tell you about Dr. Paterson, when I was fifteen and had my first spinal fusion to stop my spine from progressing he was an intern working with my then surgeon, Dr. Sherman, whom has since retired. (Or so I thought.) Now once upon a time, I may have proposed marriage to Dr. Paterson. Ok fine, I did propose marriage to Dr. Paterson. I had just gotten out of surgery, was still nakey, and on a whole lotta anesthesia and I said something a long the lines of, “ I love you and want to marry you. Forever.” I had to throw that part in there, but if you saw Dr. Paterson, who looks like a modern day Elvis Presley, you would understand completely. Anyways, Dr. Paterson informed me that he didn’t really know what was going on either and that they were not able to see it on two dimensional x-rays so he loaded me up with steroids which by the way burn/sting like the dickens and sent me on my merry little way. Here is what is going to happen next… in eight weeks when my shots are going to wear off I am suppose to come all the way back up to Albucrazy to make a decision on what I want to do next, if I am still in pain. My new options are, continue the shots for the rest of my life, or be opened back up, remove hardware and pray that my back is strong enough to go on without it. In other words, no one knows how to handle the current situation and I got the feeling today that they were a little scared to deal with it because I do possess so much hardware. Here’s the kicker, are you ready? I was informed today that my past/best damn doctor I have EVER had, Dr. Sherman, has come back out of retirement these last couple of months. To which I am now wondering how I missed this and why I am now dealing with a bunch of clowns that have no idea what the hell they are doing. Talk about a whole new level of frustration.