but you don't look sick to me...

A sweet friend sent me this article a few days ago, written by a young woman with Lupus. After years of living with her invisible disability, she found a great way to explain to others what it's like to live with something that affects every decision you make each day. To read the wonderful and helpful analogy, click here. I can really relate to her analogy and her website which is aptly titled "But You Don't Look Sick To Me." I can't even begin to count the amount of times I've heard a phrase just like that when people discover what I've been through.

I remember when I met with my first surgeon four years ago, and he explained something to me that really helped me understand people's reaction, or rather, lack of sympathy, towards people with an invisible disability. He said, when someone has a broken leg, or is using crutches, or is confined to a wheelchair, people can clearly see that that person has trouble doing everyday things, and may need extra time and attention. He noted also, that a broken arm will heal, and the cast removed, and that person who received so much sympathy, will go on with their lives and probably never think too much about their broken limb once it's healed. "But," he said to me, "You will have scoliosis for your entire life. No one knows you have it by looking at you. You can walk, and you are young, and no one would ever know you have an incurable, genetic disease that left unchecked could crush your heart and lungs. So when you try to explain to someone you have constant pain, or that by the end of the day you just need to lay on the couch and not move, well, it just doesn't compute the same way a broken arm or a wheelchair does to them."

And it's true. I realize how I used to look at others has completely changed going through the last four years. I'm not so quick to judge by appearances, and I certainly have more sympathy for people with any sort of chronic condition, pain or disability. Sometimes it doesn't seem fair that people with chronic pain can be treated like hypochondriacs, or as I've personally been told, that they "just need to find a way to deal with it..."

I feel sometimes that I have to defend myself and my inability to do certain things. I remember when I worked as a nanny, I had done some shopping for the family I worked for, and among the things I purchased one day were huge boxes of canned dog food. At the grocery store an employee had loaded the heavy boxes into the car for me, but I realized once I got home, I shouldn't lift them myself to carry them into the house. My employer, who knew I had scoliosis, was not very understanding when I told her I couldn't bring them in. I remember the way she spoke to me, with an air of "well, this is silly...they're not that heavy!" And they weren't that heavy...but they were definitely over the weight limit of what someone with my spine should have lifted and carried. It's an awkward thing sometimes to say, I know....I look fine....but I can't do that normal activity because of this invisible thing inside me that you'll never understand, or care to know about.

Thankfully, I'm less sensitive about it now, as I've lived with it longer, and realized that it's okay to ask for help, or excuse myself from an activity if it's not right for my spine. I was shopping recently and I dropped that little plastic number card they give you in the dressing room, and I was hurting and too tired, and just couldn't get it off the floor...and instead of feeling embarrassed or weird about it, I just walked up to the clerk and said, "I dropped the number card and I have a bad back and can't get it. Sorry to bother you, but would you mind getting it for me?" And she did, and I don't really care whether she thinks I'm lying, weird, or crazy.

All I know is that suffering comes in many shapes and sizes, and to compare one to another isn't very helpful. To say that one person's struggle is worse than another is to assume that you know everything about that person's life, and how they feel pain and deal with difficulty. What is helpful is treat everyone with kindness and concern, and not to judge by appearances alone.

"Pain insists upon being attended to. God whispers to us in our pleasures, speaks in our consciences, but shouts in our pains. It is his megaphone to rouse a deaf world."
— C.S. Lewis

then they came for me...

"Unworthy of Life"
I read a disturbing study recently that 90% of unborn babies whose prenatal tests reveal they have or are likely to have some level of Down syndrome, are aborted. New York Times columnist Ross Douthat commented on this staggering percentage "Today a Down syndrome child has a better chance than at any time in history of living a rich and rewarding life–yet less of a chance of being born." As a person with an incurable, genetic disease, I am horrified that we as a society are choosing to eradicate these unborn children, simply because they have (or may have) that syndrome.

Where do we draw the line? Does a child with Down syndrome deserve to die because their life may look different than ours? What if my mother had been able to "test" me while I was still in the womb and found that I would not only have Scoliosis, but need to wear a brace, and endure 4 painful surgeries? Is my life not worth living because I have a disease that is incurable, causes deformity, and can be painful?

We are not far away from such a test for Scoliosis. There is a new test, called the ScoliScore that geneticists say can predict the severity of the progression of an individual's Scoliosis. Supposedly it will predict whether a young adolescent will need to have surgery in the future, or if they will stop progressing at a certain degree. Personally, I am somewhat leery of any test that tries to predict something like that. As someone who was told that I would never progress, and then did, I feel it is better to be prepared for the chance that you may need surgery at some point, rather than be told that you will "certainly" never need surgery. It was hard for me to accept the progression of my curves because of that misinformation I was given. However, if this test turns out to be accurate, it could be a wonderful tool for helping parents be prepared for a surgery, or relieve them of unnecessary worry.

But, with a test that looks at our genes that cause Scoliosis, I am sure it is not going to be far down the road when they will be able to test an unborn baby for that same gene or genes. I wonder how many parents will choose to end the life of their unborn child because a doctor tells them that he or she may have Scoliosis. If the reasoning behind aborting children with Down syndrome is because they will be a "burden" financially, and their health issues can be vast, and their lives may be drastically different than most people....could you not say the same thing about Scoliosis? I have already had 4 surgeries that have cost almost 8 hundred thousand dollars, I wore a very expensive back brace for years as a teenager, not to mention the hundreds and hundreds of x-rays and doctors visits, treatments, pills, injections, and physical therapies. I've had pain, suffering, deformity, setbacks, fears, and trials. It has affected relationships, jobs, when and how we have children, what kind of house we want to live in, and every other area of my life.

But I would never say that my disease has ruined my life, or that my life is not worth living because of it. In fact, I would say that my life has been better because of what I've been through. I would say that I am stronger, wiser, and have a greater sense of appreciation for life and the blessings I have.

But maybe an outsider who has never met me and just looks at the "stats" of my life, would decide that it would be "unfair" for anyone to have to go through what I've gone through...and therefore, it would be more "humane" to end my life before I was even born....

All I know is that if people are ending their unborn children's lives because they think it is the more "humane" thing to do, we are on the precipice of a very steep and ugly slope. There is no end to this line of thinking. Perhaps in the not-so-distant future, some may say that people with a low chance of ever needing Scoliosis surgery have more to live for, and therefore deserve a chance at life, and therefore a chance to be born. It seems logical that it would follow that those of us with the potential for large curves would be deemed "too damaged" to enjoy our lives, and therefore eliminated before we got a chance to live outside the womb. And what about all the other genetic diseases? Will there be a sliding scale, determining whether each unborn child meets the requirements prescribed by the all-knowing "humane" society of the powers that be, and if the unborn don't meet them...well....the world is better off without the cripples, the lame, the blind, and the weak. Right?

I am constantly amazed at what science can and has done to make our lives better. The fact that I had my entire back sliced open, my vertebra drilled into with screws, and my entire body rearranged 6 months ago, and today I am active, working, and living with less pain shows how far science and research has brought Scoliosis surgery. I am also constantly sickened that that same science is also used to eliminate helpless and defenseless unborn children...simply because a test revealed they may have Down syndrome. Nowhere is this irony more fresh than the preemie ward at any hospital. In that room, doctors and nurses work around the clock to make sure those tiny, precious lives survive and live another day. On another floor, unborn children, often the exact same gestation as those in the preemie ward, are removed from their mother's wombs and deposited in the medical waste can. Science can be used to save, and destroy, lives.

If you have a minute, please watch this video:
                                                        If you have some time, take a look around this educational website Abort73.com to learn more about how abortion is affecting our society and our world.

Finally, I'll close with these famous words by the German Christian pastor Martin Niemoller, who was imprisoned during Hitler's reign of terror for speaking out against the evil atrocities:

"In Germany they came first for the Communists, and I didn’t speak up because I wasn’t a Communist. They came for the Jews, and I didn’t speak up because I wasn’t a Jew. Then they came for the trade unionists, and I didn’t speak up because I wasn’t a trade unionist. Then they came for the Catholics, and I didn’t speak up because I was a Protestant. Then they came for me, and by that time no one was left to speak up."

if the shoe fits....

“I cried because I had no shoes, then I met a man who had no feet.”

I finally did it. Today I went through my closet with great sadness and gathered the last of my former 6 inch-heeled glory, placed them lovingly in a garbage bag, and hauled them down to Good Will. 

I used to be convinced that if I wasn't wearing heels, I wasn't properly dressed. And, I still feel that way sometimes, when I am out and see women in their impeccable outfits with their perfectly paired heels. I miss the way heels could take a simple outfit of jeans and a top into a "date night" outfit. 

heels look a lot more comfy than this...
However, I do wonder sometimes how our culture came to appreciate this sometimes perilous fashion trend. What will it be 100 years from now? There were sky high wigs in the 1700's, and teenie tiny feet were prized in China up until the early 20th century, and women in the African tribe Ndebele consider long necks to be attractive. Will my future great-great-great grandaughters look at pictures of me in my high-heeled-heyday and laugh at the notion that we tried to convince everyone that "they aren't really that uncomfortable"?

The sad thing is, even though I know that heels cause a lot of problems for the lower back, by putting added pressure on the lowest vertebrae, I still miss wearing them, and secretly hope one day I will wear them again. I even asked on the forum a while ago if anyone wore heels post-op, and shockingly, many women do! My nerve pain is still too strong for me to withstand wearing them for anymore than a minute at a time, so I am not going to plan on wearing them anytime in the near future.

My Former Favorite Pair. 
And again, I find myself wondering why in world I would want to wear something that so obviously causes discomfort, not only to my feet, but my to my back? Oh vanity....thy name is Rebecca.  

I am pleased that there are lots and lots of cute flat shoes to wear as of late. When my pain began almost 5 years ago now, I had to go to the pre-teen section to find anything besides flip-flops. And while flats may not have the dressy appeal as a pair of pumps, they do not cause me any pain...and that has become much more important than looking dressy.

My New Favorites 
It has taken me a long time, but I finally have a wide-ish assortment of flats, some for dates, some for church, and even some for Gator games. For the first year or two, I wore flip-flops and my two pairs of flats exclusively. It's nice to have some variety back in my shoe life! Someday I may once again give in to the high-heel temptation. But for now, my heels will be worn by women with no back pain, and my flats will be worn by me.

nothing helps a bad mood like spreading it around...

I was reading a great blog the other day, and the author had listed out things that made her happy. I think this is a good thing to do from time to time, and can be helpful for lifting yourself out of a bad mood. However, I was inspired to do the opposite of this, and list out things that are bugging the proverbial bleep out of me right now. If you want to read an encouraging, hopeful, happy post, just scroll to my previous entry and you will have all the sunshine and moonbeams you can stand. Sometimes I think when I post so many positive entries, it might give off the impression that being fused is easy as pie, and that it's an easy transition. And for the most part for me personally (thankfully), it has been an easy transition, and as I've said before, the things I've given up were well worth the things I've gained from the surgery. BUT there are things that are annoying, frustrating, and just plain irritating.

SO here is my Anti-Happy List:

1. Shaving my legs since this surgery has become quite the chore. Not that shaving has ever been an 'enjoyable' experience, but now that I am taller and therefore further away from my ankles than ever before, reaching said ankles takes quite a bit of gymnastics and core body strength. It can be done, but let's just say it is not easy trying to balance on one leg and not bend and not fall. I feel I am doomed to fuzzy ankles. Please do not look too closely at my ankles. Thanks.

Log Rolling to Get Out of Bed
2. Getting into bed, and then realizing the sheets are way down at my shins. Doesn't seem like such a big thing right? Well next time this happens to you, try to reach them without bending your body down to get them. I have to log roll over, sit up, and then pull them up, then lay back down. It must be the-nearness-and-yet-so-far-ness of the situation that grates on me. I can't remember ever thinking about this before I had surgery, but I seem to think about my sheets on a regular basis now.

3. Losing bobby pins. (I know this has nothing to do with scoliosis or fusion, but this really annoys me.) For the life of me, I do not know where they go. Somehow I always only have 4 or 5, rusty, strangely shaped pins. I don't understand this, as to my knowledge, I never chew on, wash, or put them in a trash compactor. When I buy a new pack, I might as well throw 95% straight into the trash can, and then step on the last 5 so that they become unusable, bizarre shapes. This also happens with hair ties and hair clips. Somewhere out there in the world is a large pile of hardly used hair-related products that belong to me.

4. Shoes with buckles. So I'm glad that there seems to be a trend of cute, strappy sandles that don't hurt my back to wear. But the genius that places the buckle on the outside of the foot has obviously never had scoliosis surgery. It can take me anywhere from 5 to 15 minutes of sweaty frustration before I can thread the strap through the buckle, and then another to get it actually securely buckled.

5. The Mostly-Old (and few random young) People who give me dirty looks when they see me get out of my car parked in a handicap spot. I used to feel self-conscious about parking there. But now I feel like, hey, when you have 26 screws and two rods in your spine, then come talk to me. But I still don't like the dirty looks.

Which brings me to number 6: Getting in and out of the car. It's not as bad as the first 2-3 months post-op, but sometimes I get really annoyed with backing up into the seat, and hitting my head. And forget about not being able to find a handicap spot and having to squeeze out of the half opened door without twisting....

7. I really, really, really miss sleeping on my stomach. I was a devoted stomach sleeper pre-op. Now I can lay on either side, or on my back, but no stomach. It's not good for anyone with a fusion as high as mine to lay on their stomach because of the extra pressure it puts on your neck and cervical vertebra. sigh....I miss it.

And that's it for now. Thankfully, it's a short list.

leaving on a jet plane....

I am so excited I'm about to jump out of my skin. Today I booked my first plane tickets in over 5 years! I can not believe that at only 6 months post-op, I am feeling so great that the idea of getting on a plane and flying somewhere is not only appealing to me, it's exciting to me!

I used to travel quite a bit before my leg pain started. One of my favorite places to visit was Vermont. My brother used to live there and I would fly up there to visit him and his family, and go snowboarding. Unfortunately, I don't think snowboarding is in my future, just because I'm terrified of a fall that could send me back to the hospital. See, here's what happened last time I went snowboarding:

luckily, it was just a broken arm. However, when I fell, I did fall hard, and I can't imagine falling that hard with my new back. It does tempt me, especially since it doesn't seem like I can surf either (again, getting sucked into a wave and being pummeled against the sand doesn't seem appealing to me at this point) but for now they are both going into the "we'll see about that in a year or two category". I do know of two people from the forum who ski and snowboard, and they have had no problems, so it is physically possible even after having your entire spine fused. But like I said, I'm going to give it a few years before I seriously consider getting back on either board. So while I am playing it safe when it comes to sports,  I can travel to do other things!

I've wanted to go to New York ever since I was a little girl when I watched On the Town and Guys and Dolls. I think most Americans want to go there at least once in their lives, and I've dreamed about it for a long time. I love musicals, and shopping, and of course, pizza. So when one of my best friends suggested a few of us girls go there together, I didn't even hesitate! She happens to be from New York, so I'm going to have the best, most fun, personal tour guide ever, and I don't even have to pay her! We're going to go in the fall, so I have some more time to recover before I get on the plane, but I'm feeling so great right now I would have no problems traveling tomorrow.

Gene+Kelly+Frank+Sinatra+-+_New+York,+New+York_ by LadyOrin

I cannot believe it. If you had told me I would want to get on an airplane and fly anywhere 6 or 7 months ago, I would have called you a liar. (Okay, so maybe I wouldn't because that's kind of mean, but I wouldn't have believed you). Having this surgery has completely changed my life. I've wanted to do so many things, and go so many places, but I've missed out on most of it because of the pain I was living with. I can't even number the amount of concerts, dinners with friends, movies, and family trips I've missed out on these last 4 years because of my pain. I had stopped thinking about going places like New York. It was so unappealing to me because I knew just riding in the car to the airport would hurt, not to mention flying, sleeping on a hotel bed, or walking around the city. Travelling was just something I wasn't going to be able to do....or so I thought.

Here I am, 6 months later, booking plane tickets. Having the ability and desire to go and do things lifts my spirits. I feel like I've been given a new life, and I am so thankful. (and excited!)

take a deep breath...

Sometimes when you have something major wrong with your body, like scoliosis or some other disease, you start to get something I've decided to call everything's-related-itis. You have something so huge and effects so much of your life, you start to think absolutely everything that goes on in your body is related to that problem. This can in fact be true, and it is unwise to dismiss things as unrelated simply because they don't seem related on the surface. For example, when I started having pain in my leg, I didn't think something was wrong with my leg, I thought something was probably wrong with my back, and more specifically with my scoliosis. It only took me 6 orthopedic, neurosurgeons, and spine specialists to find one who proved me right. However, this way of thinking can also cause a sort of pigeon hole view of your body, and lead us to misdiagnose simple problems as much larger (and usually scarier) problems.

The Rushing Ranch--All 6 Glorious Acres and No Mule  
Take for example the last 4 or 5 weeks for me. I have asthma. I've had it since my late teens, which I blame (sorry Mom and Dad) entirely on the fact that I grew up on 6 acres that I spent entire summers for years of my life mowing. I'm not exaggerating. Florida has about 8 to 9 months of grass growing, sun-shiney months. That means the grass always had to be mowed. Mowing 6 acres with a riding mower (as opposed to a real tractor) not only takes hours and hours, it floods your lungs with allergens for hours and hours. (It also makes you deaf and tan, but that is neither here nor there.) I didn't grow up as a child with asthma, but as I got older I started to have problems with chronic bronchitis and was diagnosed with asthma at around 18 or 19 years old. Do I have any hard proof it is related to the mowing? No. But it seems pretty likely to me...

Anyway, so I have asthma, but it hasn't been that bad for the last 5 or 6 years. I haven't even had an up-to-date inhaler on hand, because I haven't needed it. That was until about 2 months ago, when I started to notice a strange, deep cough after my physical therapy and a feeling of tightness in my chest. I didn't immediately think asthma though. This is where that "everything's-related-itis" comes into play. Instead of thinking asthma, which would have been a pretty smart guess, I instead immediately thought, "ohhh noooo...I must have fluid in my lungs from my surgery for my scoliosis..." In lieu of a panic attack, I went on my trusty forum and asked if anyone else had had this happen after exercising post-op. Yes, some people said, and some people of course had horror stories of fluid in the lungs or collapsed lungs. But then others replied that the surgery had simply irritated their already existing asthma, and I should check on that...

 some questionably smoky sparklers
Oh yeah. Asthma. Called my primary care doctor and we've been trying to get a handle on it ever since. I can remember in the first 3 or 4 weeks post-op, every time I sat up, I would cough because it felt like someone had punched me in the lungs. But then it would go away a minute later. The surgeon said that was because when they moved my lungs around a little (gasp, yes I know, MOVED...my LUNGS) during the surgery, it can tend to irritate them. Yeah, I would think it would irritate them to be touched, nudged or moved.  It does seem that the surgery also irritated my asthma. Since my lungs were already more sensitive than normal, that "nudging" made it harder for my lungs to handle the massive amounts of pollen we've been having here in Central Florida. Once I started using a fast acting inhaler and a preventative inhaler, I started feeling a lot better. But then I went to the beach, and on my last day there, smoke from some fires burning up in Georgia came wafting down the shoreline. It was like someone had failed to let me know that Smoky (of Lost  fame) had retired to Florida to be closer to his grandchildren. And, just like that, I was hacking my lungs up all the way home to O-town. So my doctor prescribed another a oral steroid to add to the 2 I was already inhaling, and I was feeling better over the weekend. But then this past Tuesday morning I woke up feeling like a large gnome had parked its rear on my chest and decided not to move. Did it have anything to do with some sparklers we may or may not have lit to celebrate my beloved Country's birth? Possibly...but we can not say definitively.

But today is Thursday you say? Yes. It is Thursday. For two days I read everything on the internet I could find about fluid in the lungs after scoliosis surgery. Also collapsed lungs. And anything else having to do with scoliosis ruining everything in my body. Last night I lay awake until close to 2 a.m. running all the different scenarios over in my head of how I might possibly drown in my own lungs. Very dramatic....that dang "everything's-related-itis" got the better of me once again. Instead of calling my doctor right away when my fast acting inhaler didn't seem to be helping me, I let it get really bad until today I couldn't take a breath or talk without coughing so hard it made my titanium frame shake.

So, I went to my doctor again today. Here is the break down. I have asthma. That's it. It's as simple as that! Yes, this prolonged asthma attack is probably related to the surgery, in that it initially irritated the lungs. But that's it. I could have had this happen without the surgery, and it could have gotten just as bad if I kept letting it get further and further out of control. Now I am taking a slew of steroids etc to get my lungs to relax and all those little bronchioles to open up and let the air through. I've got a precautionary x-ray tomorrow, just to make sure that nothing else is going on, but after using my brand new handy dandy nebulizer treatment this evening, I'm already breathing better than I have in days. Funny.

using my "hookah"/nebulizer 
I try not to let my scoliosis cloud my thinking. But it does get hard after getting years and years of conflicting, constantly changing information about my disease. It becomes harder to trust professionals when they've given you bad information, or misdiagnosed a problem, or told you something you know is absolutely not true (for example I could name at least 4 scoliosis "specialists" who told me that as a matter of fact, scoliosis does not cause pain, or progress after a person stops growing.) When there is a feeling of doubt, it starts to spread to things like this, and can be very detrimental to my actually getting the care I need. I do absolutely believe we have to be our own advocates, and learn as much as we possibly can about our own bodies, regardless of whether we have a disease or not. But we also have to be careful not to fall into the pit that those "specialists" fell into, that is, deciding we know it all and refusing to look for another cause or solution to a problem.

So, tonight I'm doing some breathing therapy, eating cold cereal and potato chips for dinner, and watching Bill Cosby's Himself on DVD with my hubby and my puppy on the couch. It's actually not a bad way to spend a rainy evening.

what's next?

Do not be afraid, for I am with you; I will bring your children from the east and gather you from the west. Isaiah 43:5

When I was at the beach a few weeks ago with my extended family, one of my wonderful Aunts asked me what I was going to do now that I wasn't so consumed with my back and recovering from surgery. I shared this with her then, and I'm excited to share with you all what is hopefully going to 'consume' us next. Our 'next' step is beginning the adoption process. Or really, re-beginning the process, as we already began it LAST summer before my new pain started in my other leg.

For my husband and I, adoption has been something we hoped would be a part of our family story, at some point. Before we were married, we realized we both had in our hearts the hope to one day adopt, and it was one of the things we felt was a special bond between us. Of course, we had no idea that I would end up undergoing 4 surgeries in the first 4 years of our marriage, or that adoption would become a sooner rather than later option as my body would go through the ringer. We envisioned our family beginning with a few biological children, and then a few adopted, when we were a little older, and had a little more money in the bank. It seemed so picturesque in my mind, so neat and tidy. Well, we all know what happens to plans and how quickly life can change those visions.

I do want to be clear, I do not know of any reason why I wouldn't be able to get pregnant. At a year post-op my surgeon will give me the okay to try. He even said he thought it would be better for me to have the surgery before we tried to get pregnant, as having the added stability for my spine when you have to carry around all that extra weight would be a big help. Also, with the amount of pain I was living with, he was very concerned about what that extra weight would do to further compress my already irritated nerves. So when I decided to have the surgery, one of my incentives was that I would be able to get pregnant later, without the added worry of whether or not my curves would increase due to the hormones, or that my pain would increase and cause me to need the surgery along with take care of a baby or young child.

But to be completely honest, the idea of getting pregnant, even if it's another year from now, does not sound appealing. I have had such a difficult 4 years, with constantly being at the doctor, constantly taking pain meds, or being injected with this and that, having a million x-rays, not being able to travel or have a glass of wine, oh yeah, and having FOUR major surgeries in a row...well....let's just say I need a BREAK. Or rather, my body needs a break. I want to let it heal and get stronger for at least a year or two, maybe more before I can start to even think about taking on pregnancy.

Since we already knew we wanted to adopt at some point, it was easy for us to switch gears and start trying to adopt. We are hoping to get home-study approved in the next month or two and from there we'll see what happens. Having gone through these last 4 years, I have such a different attitude about how to approach this overwhelming and sometimes scary process. I think 4 years ago I would have 'planned' it all out, gotten my hopes up and tried to control everything to 'ensure' we got our child as soon as possible. Now I can see how God has provided for us over and over, in ways that we had nothing to do with, and am better able to hand this over to Him and know that He really does work for our good. I know it won't always be easy to do that, but I feel such peace that God has our child for us, and He will bring him or her to us at the right time. As a friend of mine (who is also going through the adoption process),said to me the other day "God knows both of our babies due dates" and I really do believe that.

So now you know what's next for me! As I continue to heal and get stronger, I have a wonderful hope in my heart and a joy to look forward to. I'll keep you posted as we begin this new part of our journey, and would love any prayers for us, our future baby, and for peace and patience through it all.