Happy Anniversary...

I almost forgot that a year ago today, I was in the midst of a 7 hour surgery. I almost forgot that the night before I couldn't sleep because of the fear and terror that kept my heart racing. I almost forgot that the entire month of December leading up to the 27th, thoughts of the surgery and what it could fix or destroy consumed my every waking moment.

But when I remembered...I felt like it is almost like I was looking at memories of a funeral. A very painful funeral, where I had to let go of any hope of ever having a "normal" back. A funeral where I had to sit there and experience the pain of that loss in order to fully mark it as a signpost in my life. To pretend that the loss was not there, or that it was not painful, would be a lie. But in the aftermath of that funeral, that death, and that loss, I am living a whole new life that is full of joy, hope and so wonderful that I almost forgot about the death that enabled me to live this way in the first place.
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Where can I go from Your Spirit? 
Or where can I flee from Your presence?
If I ascend to heaven, You are there;
If I make my bed in Hell, behold, You are there....
And Your right hand will lay hold of me.
If I say, “Surely the darkness will overwhelm me,
And the light around me will be night,”
Even the darkness is not dark to You,
And the night is as bright as the day.
Darkness and light are alike to You.
(Psalm 139)
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When I woke up this morning, spent some time in the Word, fed my dog and went for a walk, my surgery was not the first thing that popped into my head. How quickly I have moved on into this new life! I am so busy with work and friends, family and our new home, my husband and our adoption journey, that I only think about my surgery in a passing sort of way. When I get a lightning bolt sensation of a nerve roaring back to life, or when I can't quite reach the remote under the couch, I remember. Or when I have driven 6 hours in 2 days and realize I couldn't do that for the last 4 years...I remember. Or when I place my hand on my back where my hump used to be....I smile, and remember.

What A Difference A Year Makes!
The memories of the surgery itself are so horrible and painful, and fresh in my mind I can't pretend even a year has dulled their sharp teeth. It is the most painful, most awful, most depressing, most dreary thing I have ever endured. The "death" of my life before the surgery was not quick nor remotely painless. But, it was necessary and it has allowed me to come to life in a way that I couldn't have imagined before I took that leap into darkness.
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I am so thankful for all of you who have joined me in this journey over the last year. Thank you for your prayers and continued support. I probably won't blog as often anymore. But I will keep updating from time to time, because this journey doesn't end at one year post-op. It is a journey that will last my entire life, and I want to be here to support others on this same road, and let you all know how my God has healed me and continues to heal me each and every day.

make your bed!

I mentioned a while ago that I am high maintenance, and therefore was considering purchasing a new bed. Well, I got it! My sweet husband decided it was time I had a bed I could actually make...although I'm not sure if his motive was entirely pure. Since I had the surgery, sheet changing has pretty much fallen into his already very full jurisdiction. So when he suggested that we go ahead and sell our old low-profile Asian style platform bed, I was excited and also realized I would have to start changing sheets again (no excuses now!).

I am now able to change the sheets like a normal person, and after doing that for the first time yesterday, I can't tell you what a strange feeling of satisfaction I got from doing such a mundane, every-day activity. I didn't have to ask for help, and it was freeing. I can do a lot of things without asking for help these days, but there are a fair number of things that I will probably need help with the rest of my life because of my fusion. But it was nice to put changing the sheets back into the category of things I can do without assistance.

Asking for, or needing help is nothing to be ashamed of, of course. But when something that seemingly insignificant becomes too hard for you to do suddenly, it can really get under your skin. My husband never complained, and didn't mind taking on another chore for the last year. But that didn't change the fact that every week when they needed to be washed, I was reminded that I couldn't do it...because of my back.

I am finding ways to get around my fusion, and don't really notice it too often. But sheets need changing on a regular basis, and it just didn't make sense to hold onto a bed that I couldn't reach! So while some things I've given up doing (at least for now), and there are some things I've found new ways to do (like putting on shoes and socks), sometimes I just have to let go and accept that I need things a certain way in order to do them!

I really appreciate things now that are high up, and don't require any bending, even though I can bend a lot further now than I could a year ago. We recently moved into a new home and the oven is up off the floor. I am now able to cook things that I couldn't since my surgery, since I was too afraid (and not strong enough) to lift heavy things in and out of the traditional oven we had at our old place. I probably would have gotten used to the old one eventually, and figured out ways to safely cook with it, but I really love that our new one requires zero bending and therefore is much safer and easier on my spine.

We also recently bought baby furniture for the baby we hope to adopt in the near future. I purposely bought a changing table with a hutch over it where I can store all the wipes and diapers so that I don't have to reach below while trying to hold onto a squirming baby. I think about all those things now a lot more, and it really pays off.

I don't feel like the fusion holds me back, and it doesn't nearly as much as my debilitating pain used to. But it is definitely easier on me when I consider my limitations and find ways to work around them.

It's amazing how different my life looks now, at almost a year post-op. Yes, sometimes I get frustrated at my fusion, or at how simple tasks can sometimes require extra thought or consideration. But, overall, I am thankful that I can do any of these simple tasks at all! Making your bed may not seem like a luxury to you, but to me it is just one more thing that I can add to my list of "can do"...and I'm thankful for every little thing on it.


it's the most wonderful time of the year...

Well, my posts have become a bit scarce. But that is a symptom of happily living life, and so you will have to forgive me.

Things couldn't be going better for me. And with the change of seasons and the closer we get to the holidays that I love so much, I am reminded over and over again to STOP and APPRECIATE this. I am getting to simply enjoy the holidays this year. I don't have a searing pain that constantly interrupts my work, my fun, or my sleep. I am not recovering from a painful back surgery, nor am I preparing myself to undergo one. I am not taking heavy pain killers that make me sick, and I am not dreading long car rides to visit precious family. In short, I am very, very blessed.

My friends and I went on my long anticipated trip to New York a few weekends ago to celebrate my 29th birthday (which happens to be my first birthday with my fused spine). The trip went exceedingly well, greatly surpassing my low expectations for how well my energy would hold up and how long my leg would withstand the vigorous walking we would be doing.

The plane rides to and from New York were not bad at all, I had no discomfort at all on the trip up, and only minimal discomfort on the trip back. I didn't need any extra pain medications or any extra muscle relaxers (which I packed a few just in case). I did take a couple more gabapentin than I normally do, but that is a small price to pay for 3 days of roaming New York. All in all, I was just like any other tourist. I got to see Central Park and all its beauty. I got to sit through all 2 and a half hours of Phantom of the Opera with no leg pain. I got to see the Statue of Liberty and walk down to 30 Rock. It was a busy, busy few days. But even when I felt the tiredness creeping on, or a pain when the bike cabby went over a pothole, I just kept reminding myself, I couldn't have done this a year ago. I couldn't have done this or enjoyed this for the last 5 years. How wonderful it was to get to see this city I've been dreaming of for years, with two of my best friends who have supported me so much through this last surgery.

I already want to go back and get to explore the museums and visit a few other tourist traps we didn't have time for. And that to me is the biggest sign of my recovery...I am not completely wiped out by excursions any more, not even one of this magnitude. My trips or family visits are are no longer overshadowed by how much pain I was in the whole time. I enjoy life, and perhaps enjoy it more now that I know what it's like to live through constant pain.

So this Thanksgiving, I am thankful for many things. But most of all I am thankful for my husband, my family, my friends, and my healing. I thank God who I believe is responsible for giving me all of the things I'm thankful for. I believe He was with me when things were hard, because He always provided for me and gave me strength to endure the pain. And I believe He is with me now, showering me with blessings and rest. He has reminded me time after time to "Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go." (Joshua 1:9) And He has proven faithful to that promise to be with me wherever I go, whether it be into surgery or to New York...



10 Months Post-Op

I saw my surgeon last Thursday for what was supposed to be my 9 month post-op visit, but last month at this time I was in the middle of the 9th circle of hell that is otherwise known as moving, and I had to reschedule. I remember thinking at the time that rescheduling my follow up visit was surely going to cause one of my rods to break, or a lung to burst or some other life threatening condition because I chose not to go in. But thankfully putting my visit off by one month did not in fact cause my remaining discs to rupture or any of my screws to come loose. I did have an intensely realistic nightmare the night before I went for the appointment. In that nightmare I was sitting on the examination table when my surgeon, casually looking at my x-rays, says with a creepy tone of voice out of a horror movie, "Well, it's that time of year! It looks like we're going to need to schedule another surgery, and quickly too!" I of course spent the rest of the dream running around trying to get my life in order before I had yet another surgery, and I was so sad because I was going to have to put off adopting yet again. I awoke feeling literally sick to my stomach from the fear and stress of thinking I had to have another surgery so soon.

The funny thing was, I hadn't really thought about the possibility of my needing another surgery at all, probably because I've been so preoccupied with the move. But that fear, while put on the back burner, was very real, and caused a very intense feeling of anxiety and nausea. It also made me realize how having 4 surgeries in 4 years can make you really, really afraid of follow up visits! But seriously, that dream, and the very real stress it caused, made me think about how much those 4 surgeries have affected my life. At around my 8 or 9 month post-op visits every year for the last 4 years, I've had something come up that either required surgery immediately, or made me consider surgery within a month or two. So these post-op visits in the fall don't have a great track record, or usually contain good news. This October is the first one in four years where I haven't been recovering from a surgery or contemplating the need for one. And I almost got away with taking it for granted.

Thankfully, my nightmare was not prophetic. My surgeon had no bad news for me at all. In fact, he and his entire office staff, (which have become like my extended family), were elated with my progress. He asked if I would be willing to speak with future pre-op patients around my age to help them in the decision making process, and I of course said I would love to. He took x-rays and they looked great! I was out of there in less than 30 minutes. It is such a  big change. My visits used to take hours and hours, and usually involved me breaking into tears at some point. Now I'm in and out and everyone, especially me, is all smiles.

I may continue to have those nightmares before my follow up visits, but I don't think that's surprising considering what I've been through. But the exciting thing is...in three months I'll have my last surgery related follow up visit. I'll be over a year post-op at that point, and who knows...maybe the reality of how well I'm doing will really sink in.

i've dropped off the face of the earth..er..blog

I am too pooped to party. I have been going non-stop for the last week and a half, and don't have time to be writing this blog right now. Even if I had the time, I don't have the energy.

So this will be brief. I am very, very, very happy. I am in a beautiful, single story home, with a POOL. Be jealous my friends...because I will be floating with a fruity drink in my hand just as soon as I finish doing the 90,000 things that go along with moving your home and your business at the SAME TIME.

I have a great sense of relief as I walk around our new home, because I am no longer trying to figure out how I would carry a growing child up and down the stairs. I am thankful to have a pool to exercise in and enjoy the relief it gives from the constant pressure of a fused spine.

Most of all, I am thrilled to be able to do so much activity with so little pain in my leg that I often forget that a year ago I couldn't have done or enjoyed any of this. But when I do remember, I stop and thank God that I am, at only 9 months post-op, so blessed to have a new home...and a new life.
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If you can't find me...check the pool.



high maintenance...

I have been feeling a little frustrated lately with all the things I'm having to do to keep my lungs working properly, on top of all the other day-to-day things I have to do to get my back stronger and healthier. It is just another thing in a long list of daily tasks that albeit not life threatening, disabling, or all-consuming, they add up to a lot of annoying maintenance calls. It's something like being nibbled to death by a duck...not too painful, just annoying.

Bye bye 2 stories!
I was talking with my husband about this other day, laughing about how "high maintenance" I am, and how much I hate being that way. I'm not the fun high maintenance, getting my hair and nails done every day. No. I am the "on-a-first-name-basis-with-the-CVS Pharmacy-staff"-high maintenance. I am the "need special sheets, pillows and blankets" for my asthma high maintenance. Or the "I need to buy a new bed because I can't put said special sheets on my low platform bed because I had scoliosis surgery" high maintenance. And while I can laugh about it, and see that compared to many, my daily struggles are not as bad as a lot of people, I honestly still get annoyed. And if I'm doing something to get one area under control, like my asthma, something else is bound to go wrong. For instance. I'm taking 4, count 'em 4 corticosteroids right now to try and get my asthma under control. But guess what happens when you're taking that many steroids orally for an extended period of time? Thrush. Yep. Got it. So now I have to take a medicine to combat thrush 4 times a day...on top of the 6-8 doses of steroids every day...awesome. And that's just the first example off the top of my head.


Hello one story!
The other fun thing about being medically high-maintenance is the COST. I get to spend all kinds of money on fun things like inhalers, nebulizers, back braces, bone growth stimulators, and x-rays. We might as well have a insta-deposit directly into the CVS Pharmacy. And don't forget about the brand new special sheets, pillows, and blankets I bought last week. And I am seriously considering buying a whole new bed after we move this weekend. What's that? Oh, yes, I forgot to mention...we are moving. Why? Because we currently live in a beautiful 2 story home. And my high-maintenance back needs a ONE story home. So we're moving. I'd say that's as expensive as my high-maintenance needs get!

When I add up how my 4 surgeries cost almost $750,000 or how I have to plan my meals around my pill or medication doses...I just sigh. But then I remember that even in spite of all the annoying things I have to remember to do, or not do, I'm blessed. I know that it's amazing that we've been able to afford all the things that I need to breathe and stand up straight. I'm blessed to have family and friends who understand that I need to stop in the middle of the meal and pop a few pills, or lay down when my leg is bothering me. And I can laugh about the fact that I have a walker and a raised toilet seat in my garage...but I'd still take a week or two of that other high maintenance lifestyle!


pillow talk...

It turns out, there are some upsides to having large acreage of numb skin on my back. I discovered this yesterday, when I had to have testing done to see what exactly I am allergic to, and they proceeded to scratch my entire back up with all kinds of nasty little allergens. I didn't actually feel any of the scratches, though I did feel some itching later after they let it sit a while. Of course, the back skin test didn't show ANY allergy reactions...which I'm not surprised about at all. If there is a test to see if I have something to verify why I am ill, in pain, etc, that test will come back either completely normal or inconclusive. And per usual, that is what happened yesterday. So then they pulled out the big guns and tried injecting the allergens a little deeper into my skin, this time using my entire arm. Astoundingly the test showed what I was allergic too!

I am allergic to oak dust something or other, and THIS:

Disgusting little dust mite-arachnid types that love to live in your mattresses and pillows, and live off our discarded skin. YUCK. The funny thing is, we have a memory foam mattress which is a lot less appealing to dust mites than the regular kind. And up until I had my surgery, I slept on a memory foam pillow.

But guess what? After the surgery, I couldn't use my memory foam pillow any more because it was too thick for my neck, and put too much pressure on my cervical vertebra. So I grabbed a super old, flat pillow out of the closet (or somewhere, I'm not entirely sure...) and have been sleeping on that for the last 8 and a half months. 

Another fun fact, dust mites also love comforters, blankets and sheets. Guess what I have been doing a whole heck of a lot less of since I had the surgery? Changing my sheets and washing my blankets! I used to do it every week, but after the surgery it has become very hard for me to do as I have one of those Asian style platform beds that is very low to the ground, and therefore also very far away from me. Our house cleaners change the sheets for me when they come every other week or so, but they never wash the comforter and I never thought about how I needed to be doing that. 

So, the conclusion my asthma doctor has come to is this: I had the surgery, and when they moved my lungs it caused them to constrict, and become a lot more sensitive to allergies than I ever was before. At the same time, I stopped sleeping on my memory foam pillow and started using an old, probably dusty pillow. The sheets haven't been washed as often, and the blanket hasn't been washed until yesterday (after I had my freak out about how disgusting dust mites are). So all the while, my poor lungs have been trying to fight off the allergies and has caused my asthma to kick into high gear, while sleeping every night on the very thing that I am allergic to.
I will probably have to get dust mite resistant blankets and pillow cases, and change my sheets every week. But first thing is to find a pillow that is memory foam without being too thick. 

Ah the joys of scoliosis. The funny thing is, if I hadn't had the surgery, I would probably have at some point lost a lot of lung function as the spine continued to invade the space in my chest that is meant strictly for breathing. But because I had the surgery, I am having trouble breathing. And round and round it goes...

I am happy to have an answer as to why I've had such a hard time since the surgery. And, as far as allergies go, this one is very easy to manage. I was worried I would be allergic to this little guy, and I knew there was no way I could "lessen my contact" with him! 

take a deep breath, part 2 or "how I WAS right after all"

I posted a few months ago how my asthma symptoms seemed to have been kicked into high gear by the surgery. (Click Here to read that post.) Well, I've been doing all the things my doctor told me to do, ie. 2 oral asthma medicines plus 4-6 albuterol treatments via the nebulizer every day for the last few months, and they don't seem to be working.

map of pollen rates around the country
They were working, at least they seemed to help a lot when I first started taking them. The tightness in my chest seemed to lessen, and my hacking cough went away. But over the last few weeks, all my symptoms have come roaring back, to the point where I am coughing all day and the nebulizer doesn't make me feel any better.

So my general practitioner said I needed to go see an asthma specialist. I went for my first appointment today, and guess what? I WAS right about the asthma being related to my surgery . At least, that's what the asthma dr. seems to think. (I wanted to jump up and say "I am genius diagnoser after all!" when he gave me his opionion, but I knew any jumping or shouting would result in a hacking cough so I kept the proclamation to myself.)




This is what he thinks. First of all, he believes that when my lungs were gently "nudged" during surgery, they became irritated, and probably started to constrict. Then when the spring came, just as I was out walking and becoming a little more active, the air was full of sticky pollen that just loooves asthmatic lungs. The pollen further irritated my already restricted airways, and caused the asthma symptoms of coughing and the tight feeling in my chest.

He also thinks that another result of my surgery, tight back muscles, has further irritated or exacerbated my asthma. Because my back as a whole is tight, he thinks it has been harder for my body to relax, and take the deep breaths we need to expand our lungs fully.

So...first of all, I wasn't crazy. Second of all, what does this mean? Well, for starters, I'm now part of the lucky group of asthma sufferers that has to stay on top of their asthma every day, all year round. You could say I've graduated. I will probably have to do a lot of stuff to get the asthma under control, and that is why I'm going back in a few days for further tests. We'll have to figure out what I'm allergic to specifically and see if I can do anything to limit my exposure to those things. Before the surgery, I just took an allergy medicine with a decongestant, and that did the trick. Now, I'll probably need a lot more than that allergy pill to help my lungs fight off the things that irritate them.

my nerdy self in the 90's
Super. One more thing to take care of. On the bright side, I'm not in as much pain as I was pre-op. So, I have to look at it like, although my asthma getting worse because of the surgery is frustrating, it is well worth it to be in less pain, and be able to function like a semi-normal person again.

I have achieved the trifecta of nerdom: extreme near-nearsightedness, scoliosis, and asthma! All I need now is a pocket protector and a degree in physics.






the mother of invention...

I shared with you all a while back that my husband and I are in the process of trying to adopt. We have finished all our paperwork, and are currently waiting on the approval of our home study. (To read more about why we are choosing to adopt, click here.)

I have really been enjoying the process of preparing for a baby. Just thinking about one and being able to say realistically (and Lord willing) we should have one by the end of next year makes my heart skip a beat with joy. But while I've been excited about the process, I've also had my share of worries about the sheer physicality of taking care of a child. I was a full time nanny for many years, for babies as young as 3 months old to teenagers. I've had so much practice, I can't delude myself for a moment to think that it will be easy. And with my new spine, I am sure there will be many challenges added to an already challenging situation.

One of the things that has concerned me the most has actually been how in the world I will get a baby in and out of a crib, before they can stand on their own. I have talked with mothers on the forum who have mentioned that it is very difficult. I wasn't sure what to do about it, and I was worried about the strain it would put on my L5 and S1, to bend over that far and pull someone weighing 20 lbs or more up and out over that bar. I had been looking at the few cribs that still have a movable front panel, but I really didn't like the reviews or the way they didn't seem sturdy. But a crib that doesn't have a movable front panel means I would have a very difficult time getting a larger baby in and out, once we start lowering the mattress.

So I have been worrying, up until this past Monday. That was the day my husband and I went to a furniture store recommended to me by one of my best friends here in Orlando. I had been looking for a mid-priced furniture set (somewhere between the cheap pressed-particle board sold at Wal-Mart and the overpriced particle board sold in most furniture stores), when I noticed how nice her set was. She told me where she bought it and after seeing how well it had held up after 2 children, I knew I had to go check out the store. When we got there we met the owner of the store and he proceeded to sell us on the reason he's managed to stay in business since 1990. He sells good quality furniture, at a reasonable price...with his secret weapon...the gate.

What is the gate you ask? Well, for someone with a spinal fusion, it is a dream invention. Without compromising the safety of the baby inside, the patented gate quietly folds down and snaps back into place, allowing the parent to reach down into the bed without straining their backs. It even has a safety feature that prevents little fingers from being pinched!

I had to restrain myself from hugging the man. I didn't even know this existed until Monday, and now I know I can't live without it! I may have a lot of other challenges ahead of me when I am blessed to be a mom. But finding something like this, that I can afford, here in my own city, well... it gives me hope and encouragement. I tested out the product, bending to reach the baby doll they had with the mattress at its lowest setting. I could do it! It will probably still be harder for me than most people, but I can do it, and I don't have to worry about that part of it anymore.

When I'm a mom, I think I will have to find some creative ways to do a lot of things...and I will probably have to be more careful than a lot of moms about a lot of things they probably never even think about. Like getting a baby in and out of a car seat or washing them in the tub. I will definitely need to adapt.

But as far as the crib situation is concerned...I can be just like everyone else. Now...if I can just find the baby to go IN the crib...I'll be all set.

P.S. If you live in or near Orlando or Tampa Florida, and you're in the market for baby furniture...check out their 2 locations. You won't be disappointed! http://www.crib4life.com/

Happy Update!
We found out late yesterday afternoon that we are officially Home Study approved in the state of Florida! That means we are ready to adopt...if you want more information, you can visit our online adoption profile here. It would be a great help if you could pass that little profile along to as many people you think would be interested to know about and pray for us. The more people who know we hope to adopt, the better. Please keep us in your prayers! Thanks!

full circle...

Last week my husband and I did one of our favorite things we do together...that is, going to a concert. We both love music and we try to go to at least one concert a year, sometimes more depending on who is coming to our area.

The special thing about this concert in particular was that 4 years ago we had planned to see the same group. We had bought the tickets, and were eagerly waiting the date we would get to see them play live. But at that same time my leg pain was continuing to get worse, and my search for a scoliosis specialist who could help me was intensifying.

The show was in October...and I ended up having to have my first surgery 2 weeks before. It was just one of the many things I missed out on thanks to my scoliosis and my herniated disc. Little did we know that I would miss out on vacations, trips, work, jobs, church, relationships, and many other things for the next 4 years.

So when we saw that they were coming back to our area, we both were ecstatic! Not only was I feeling the best I have felt in 4 years and feeling up to standing or sitting through a long, live show, I was able to drive us the 1 and a half trip to the show. As I drove down the road, we both felt the massive and positive change that has happened not only to me, but to US. When I missed out on something fun or important, he either had to go by himself and miss having me there, or he would stay home and miss out on it too. It was a wonderful sign post in our journey. We have come through so much together, we appreciate being able to do something as simple as enjoy a live music show for a few hours, together.

I do have to mention, that while it was a "full circle moment", I have arrived at this point of the circle with a large change. I don't really notice my fusion much, unless I'm having a sore day, or I forget that I can't actually reach that far behind me before it's too late....but I have to say I did notice it there at the show. Not because of any pain or discomfort, but because I don't move the same way I did the prior 28 years of my life. I have loved music ever since I was a little girl, and grew up doing ballet and playing musical instruments, and singing in bands. I don't think I've ever noticed how much music encourages me to sway back and forth or dance. When that music plays loud and fast over the large speakers, my body seems to have a natural impulse to dance! And I do still dance...it's just not how I used to. I have been relegated to the whitest of white-people dancing...moving my arms and tapping my feet. Gone is the ability to sway my back or wiggle my hips. It is a very strange thing to feel the impulse to dance and move to a melody, only to realize you can't, and your body doesn't move that way anymore.

To be honest, it did make me a little sad. It's moments like that where I am reminded of the permanence of my situation. I know that I will never be able to move those ways again. At first I chastised myself for being sad about losing the ability to do something so "trivial" and unnecessary. But then I thought about it a little more and realized, it's okay to be sad about something you lose, no matter how small it is. I have gained so much from having had the surgery that sometimes I don't let myself admit the things that I'm sad I lost because of it. But it's OK to acknowledge those losses. To pretend that I don't miss being able to lie on my stomach at night, or getting into a car without backing up into the seat, or simply swaying gracefully to a song I love....well, it would be pretending. And pretending is great when you're a child and can create whole new worlds to play in. But when you pretend as an adult to get away from the real feelings and situations you find yourself in...well, that's denial.

Do I like having to give up those abilities? No. Do I love being able to be at the show in the first place, that I couldn't have been at because of the pain I was in before the surgery? Yes. It's a trade-off. A very positively lopsided trade-off  The benefits of the surgery have far outweighed the downsides. But as I discover these small downsides along the road of recovery, I think it's a good idea to acknowledge them, just as I acknowledge and bask in the glow of the benefits and full circle moments.

As we drove home, tired and happy, we talked about the other bands we'd like to see live. It was so nice to do so without that constant caveat of "well, we'll have to see how bad your pain is." I'm so glad he's been here with me to see me come full circle and help me through the ups and downs, sorrows and joys. I'm so glad we can look forward to a life of music and white-people-dancing, together.
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"Grief can take care if itself, but to get the full value of a joy you must have somebody to divide it with."  Mark Twain


waking up is hard to do...

Sleepy time with Charlie
Today is my 8 month anniversary. I really thought this year would go by a lot more slowly. The last few years have often felt so long and slow, I thought this one would be the slowest of all. But I think that because I've been able to work so much more, and have so many things to look forward to, I am hardly aware of the time rushing by. While my pain at the beginning of this year was the worst pain I've ever experienced in my life, my recovery as a whole has been astoundingly smooth and encouraging.

However, at 8 months post-op, I am aware of new kinds of pain, and the feeling that my nerves are finally starting to "wake up." Did you know nerves are one of the slowest healing parts of our bodies? That is in part because they consist of one long cell that stretches from the low back to the bottom of your feet, or your neck to your hands. That is a lot of territory to cover when healing, and they recover from damage at the rate of about a millimeter per day, for a total of one inch per month. According to the Columbia University Medical Center, this is what happens when nerves are damaged, or in my case, severed from my T4 Vertebra to my L4 Vertebra:

"When a peripheral nerve is cut, the axon segments distal to the injury (furthest away from the spinal cord) die off in a process called “Wallerian degeneration.” When the nerve is repaired, the axons in the proximal segment (closest to the spinal cord) regrow into the distal, denervated segment. This growth occurs at a rate of about 1 mm per day. This translates roughly to 1 inch per month, or 1 foot per year. Once the axons regrow back into the denervated muscles, the muscles will begin to function again. During the time it takes for the axons to regrow into the muscles, a process that can take many months, or even years..."

So it is no wonder that at 8 months post-op, I am just now starting to get feeling in my back again. Don't get me wrong, I have had pain, achiness, and electrical shock-feeling nerve pain throughout the recovery. But my skin covering my spinal chord and the vast majority of my back, and muscles closest to my spine have been completely numb since the surgery. When I first came home from the hospital, it felt almost like I had a heavy, dull backpack on. It moved when I moved, but I couldn't feel it move. It is hard to describe how you can be both numb and in pain. Try to imagine what it would feel like if your leg feel asleep, and apply that feeling to your back muscles...then imagine the first pins and needles pain you get when your leg, or in this case your back, starts to wake up. Those first sharp pains are deep within the limb, and similarly I have had those deep pings and pains, but the middle and top layers have been completely "asleep" for the last 8 months.

I am feeling my shoulder muscles ache for the first time in 8 months. I can tell when I've had a work out, or carried something the wrong way now because I can feel my back should muscles ache and "pull" against the rods. The muscles don't actually pull against the rods, it's just a sensation of very, very tight and weak muscles. But, I am glad to feel that pain, because it means my shoulder and low back muscles are starting to heal, or "wake up." I may never get full feeling in all of my skin or all the muscles around the spine. It can take years for nerves to heal, and sometimes they never heal completely. The skin that covers the top of my left thigh is completely numb, and has been that way since my first surgery back in 2007. The nerves that run to that portion of my leg were too damaged by my herniated disc to handle the surgery that was meant to help them. The result was when the nerves were manipulated during that operation, they were damaged too much to be able to heal.

Thankfully, most of the nerves that were severed and manipulated during this major fusion were healthy and have been healing well. It just takes time. I get more burning and phantom itching now than I did immediately following the surgery. The itching is deep within the muscles and skin, and doesn't actually have anything to do with my skin. It has to do with the regenerating nerves sending signals to each other, in an attempt to heal. They are a good sign, even though it is incredibly irrritating to be attacked without warning at any time during the day or night with what feels like a million little ants inside my skin, all biting at the same time. I also get more shooting pains now, a feeling of lighting shooting through my muscles. It strikes suddenly with great intensity, and then it's gone. I've startled my husband more than a few times when I've gasped loudly when I get "struck" with that pain.

I just try to remind myself when that happens, or whenever I can feel that itching or my nerves waking up, that they are signals of healing. I want to feel those pains because it means my body is still fighting to heal itself, and I want to heal! I am thankful for those reminders too, because sometimes I forget that I need to take it easy still, even at 8 months post-op. I need to help my body to win the war, and build my muscles and strength back up slowly and carefully.

8 months of healing down, 4 more to go before I get to a full year of recovery. And from what I've heard from other post-op scoliosis patients, it could be 2 years before I see the full extent of my recovery. But if those 4 months and 1 year go by like these last 8 months, I won't mind that at all.

stern and splendid...

"Try to exclude the possibility of suffering which the order of nature and the existence of free-wills involve, and you find that you have excluded life itself." 
C.S. Lewis---The Problem of Pain

Recently I have heard some stories through the forum that have put my own experience in perspective. The first is a young man in his early 20's who had the surgery over a year and a half ago, and has just found out he will most likely have to have all of his hardware removed, and the whole surgery done over again. I can't imagine what he is going through emotionally right now. It was hard to have 4 surgeries in four years, but to have to have what I had done to me last December done all over again in less than 2 years, is horrifying. It goes to show that even if you're young, strong, and healthy, there are no guarantees with this surgery. It is not a ironclad fix, and it is certainly not an overnight one.

The second story is of a lovely lady in her 40's who has curves much more advanced than mine were, and is in a lot of pain and discomfort. She had finally made the hard decision to go ahead and have the surgery and even set a date...only to find out that her bones may be too soft to have the surgery and had the surgeon cancel the date.

I look at their situations and my heart goes out to them. I feel so blessed, so rich in my current success. Yes, I have had my own struggles, but I am not so naive to think that I am the only one who suffers or that I have suffered the most by any stretch of the imagination. And in many ways it is foolish to compare my pain with theirs, as everyone has a different strength and a different struggle. I could look jealously at the women my age having babies and doing power yoga, and assume that their lives are so perfect and easy because they don't have the genetic disease that I do. Just because you can't see someone's pain or struggle on the outside, or even in their circumstances, doesn't mean it's not there.

But what happens when things go wrong...and horribly wrong? How do you move forward with your life? How do you deal with the crushing blow of a failure of that magnitude? Do you give in, and just wallow in your misery? Do you fight your circumstance, never giving up the hope that it could somehow be better, or different? Or do you accept the disappointment and pain as something you have to live with, and try to adjust your life to "make the best of it"?

Of course the obvious answer to rule out would be the "wallowing in your own misery" option. But I do think there is a time and a place to mourn over what you could have had, or what you hoped you could have been without the hardship that you face. I had to mourn over the fact that I would never have a normal spine. I had to take days and moments, where I could confess the truth that was in my heart. And that truth was I was sad that my disease was so insidious, so all consuming. I was sad that I couldn't move or exercise without pain. I hated that it made me have to think about every single choice I made each day, from how much house work I could do, to how long I could sit in a chair at a friend's house or in the car, or walk in the grocery store. It affected my desire for children, and it has affected my husband, and some friendships too. But once I had mourned that life, a life that never really existed anyway, I was able to move out of that sadness into a plan of action. I think it would be very unwise to take on a challenge such as this surgery before one has dealt with these feelings...whatever one is sad over loosing, or sad over having to have changed. It can be tempting to think that this surgery (or whatever equivalent in your life it may be) could "fix" the problem, and restore to you what you have lost or are scared to lose. The surgery does not fix or restore a past life. It brings about a new life, filled with new options and new blessings, as well as many challenges. But it cannot give you a life without scoliosis. 


I believe in fighting for a better world. Not just in big picture things, like feeding the poor or preserving our Earth. I believe in not accepting things that are ruining our lives as a matter of fact. I believe it is vital for our physical and emotional health to keep pushing, keep searching until we find some way to improve our lot. I'm not talking about a "fix", but anything that will help us live our daily lives to the fullest. When I had seen over 6 surgeons, and each of them had turned me away with such helpful comments like "Well, you're going to have to find a way to live with the pain," I was incredibly discouraged. But instead of giving up, and accepting their prognosis, I kept fighting. I kept going until I found someone to help me. If I hadn't kept fighting, I would have eventually lost the use of my left leg, probably before I was 30. Here I am today, healthy and getting stronger every day. I am not "fixed", my pain is still there, but my condition is vastly improved because I never gave up.

Sometimes, fighting with everything that you have, may not be enough. Sometimes, after every possible option and treatment and procedure and test known to man has been done...it may be time to find a way to live with what you have. It takes a lot of strength and a lot of grace to endure the loss of physical ability, and a lot more to endure something like the loss of a friend or family member. Some things can't be put back, some things can't be undone. I don't pretend to understand why we have to suffer the way many of us do, or why there is so much pain and heartache in the world. I do believe there is a reason, even in the ugliest and most painful circumstance...I believe evil can be transformed and redeemed into something beautiful because I've seen it happen in my own life...but I can't pretend I understand the hows and whys of it all. When we are forced to "live with it" how do you live a life that is beautiful despite the ugliness of the pain that permeates your circumstances? Again, I'd say it takes strength and grace. And for myself, I have to have Someone Who can transform it for me.


"Love is something more stern and splendid than mere kindness."
C.S. Lewis--The Problem of Pain

forget and not slow down...

In life, many times it's a good thing (and forgive me as I quote a Relient K song) to forget and not slow down. It's good not to dwell too long on things that you can't change now anyway, and move forward and live your life as fully as you can, with what you have, where you are.

But, I think there are some things in life that are good to remember, especially if they changed your life for the better. If you have been tested, and you have been challenged to the very core, but you manage to come out stronger and wiser and with greater appreciation for the blessings you enjoy every day...well...those things should be remembered.

I feel that way about my surgery. As much as thinking about those initial months of recovery make my entire body involuntarily cringe, or how the thought of eating bananas makes my stomach sick, or the sound of monotonous electronic beeping makes me feel queasy, I do try to remind myself of what I went through.

I marvel at the amazing work that was done to my spine. The technology and the skill that it takes to manipulate an entire spine that has been misshaped and rotated are vastly under-appreciated and under-noted. Here is a great animation I just found that shows a greater amount of the fusion than the video I posted months ago:


If you are very brave, and want to see the gory details, here is a very short clip of a scoliosis surgery I found on YouTube. It isn't me, but to see in action exactly how they manipulate the spine leaves me both sick and astounded. I couldn't watch this pre-op, but now that I've had 7 months to adjust to the idea that they really did do that to me, and I survived, well, I can look at it with the interest of a "behind the scenes" clip on a DVD of a scary movie. Just pretend it's an episode of House, and it's all fake, and you'll be able to get through at least 20 to 30 of the 50 seconds:




YIKES! It is amazing and like a bloody horror movie at the same time. All you need are 7 hours, 26 screws, and 2 rods, and you too can have an "adamantium" spine to make Wolverine jealous.

I am not going to be forgetting this anytime soon...



my mind is on the blink...

Surgery Brain: The technical term for what happens to your brain after your body has undergone an intense trauma; ie. the complete rearranging of your torso, muscles, bones, and insides. Not to be confused with the similar and more well-known condition, "Mommy Brain." While similar to Mommy Brain, which some feel to be a permanent mental state after giving birth to a child, Surgery Brain will hopefully only last a year or two post scoliosis surgery. Surgery Brain occurs when the body uses all of its energy and resources to promote healing to said body parts that have undergone "interior redecorating", and forgets about the brain. The brain is now functioning on what little sleep it manages to get after said achy body finally finds a comfortable enough position to sleep in for 5 to 6 hours at a time. Brain may or may not be able to retain information at the speed it once did; ie. brain will never be entirely sure whether or not hands did in fact wash hair or not, and to be on the safe side, will tell hands, to wash again...and perhaps again.*

While the term may be made up, I really am wrestling with a brain that can't always seem to process information or hold short term memory the way I used to. I am doing so well over all, I often become engrossed in my work and forget about my back and the surgery for hours on end. It's only after I've had to recount the inventory boxes for the 3rd time because I can't keep the number in my head long enough to impute it into the computer that I remember....oh yeah....my body is still focused on healing, give yourself a break! While I've gone on to thinking about work and adoption, trips and groceries, my body is still working overtime to heal. I do get overwhelmed a little more easily, and deadlines give me a lot more stress than I care to admit. By 3 or 4 in the afternoon, I can't seem to recall what work I did that morning, and the idea of another project coming in last minute can make me feel like I was just asked to whip together a Ferrari in 30 minutes or less.

I also still struggle with feeling like I can't get enough sleep, and I know not getting enough sleep affects my thinking and attitude, too. I do sleep a lot better at 7 months post-op than I did at say 4 or 5, but there are still many nights where my body is sore or tense. I still get up occasionally at 2 or 3 a.m. to take a hot shower to loosen my muscles enough so I can relax and sleep. So I'm sure some of my foggy brain syndrome comes from the inconsistent amount of sleep I get, and then heap in a large dose of a body working to grow bone...well, let's just say I woke up this morning with John Lennon's voice singing "I'm so tired, I haven't slept a wink...." in my head.

It's amazing to be able to forget about the surgery, and that I'm doing well enough at this point to be able to do that for any amount of time. But my body sure doesn't forget about it, even if it can't remember whether I've put deodorant on or not (when in doubt, reapply!). And the fact that I'm able to become engrossed in my work, without horrible pain in my legs is a miracle. I just need to be more careful about taking breaks, and eating at the correct meal times and generally resting when I'm tired. I tend to push myself on, even when my body is putting on the brakes. Rather than listening to those screeching tires, I usually push past achy muscles and trouble focusing. I only realize it at the end of the day when I finally step away from my office, and realize I feel like I've been hit by a truck and can't fix dinner or fold laundry because all I can manage to do is lay on the couch and try to stay awake until a reasonable bedtime.

I've had people say things like "So, you're all good now right?" or (my personal favorite) "Your back is all fixed now, it must be great!" Yes, to some degree, I'm "all good" and my back and body are doing amazing considering the permanent metal art installation I had done 7 months ago. But sometimes I want to say to those well meaning people, "um, no. I'm not 'all better' now. I know I look normal on the outside, but inside I have 13 vertebra that are working around the clock to grow bone and fuse around the 26 screws that were drilled into them. Oh, and my lungs are still freaking out after they were gently "moved" around when they untwisted my severely rotated spine. And my muscles....oh my muscles!....have you ever had a muscle cramp that started in your lower abdomen and then ran all the way around to your back and up over those 26 screws and 2 rods into your left shoulder and clamp down so your entire back is cramped so tight you swore the rods were gonna pop out through your skin? But aside from that, I'm "all good now."

But... I am doing well, and I do appreciate how smoothly my recovery has gone. I'm thankful that I can work for hours on end before I'm reminded of what I've been through. I couldn't work for more than 30 minutes prior to this surgery, before I was distracted by burning pain. So I'll take the Surgery Brain, the exhaustion, the muscle cramps and the frustration of not being able to reach down quickly and grab my pen off the floor. I may not be "all good" now, and I may never be "fixed" this side of heaven, but I certainly am better off than I was 7 months ago, and that's something I won't forget....even with surgery brain..


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*Disclaimer: any definitions found in this blog post are in no way meant to be a true medical definition. I never went to medical school, and I certainly never became a doctor. If you were under that impression, thanks for thinking I'm that smart.

the ugly truth...

Okay, so this post is strictly for all my scoliosis readers. The rest of you non-scoli's, please ignore.
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Update: I have added some helpful PDF documents to my "Preparing For Scoliosis Surgery and Why I Did It Now" section of my blog. You can click on them and print them out for your reference.
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One of the things I was least prepared for before my first and second surgery were how awful the side effects are from the massive amounts of drugs that will be pumped into your body. Every single one of the pain killers (along with the 7 hours of anesthesia you will have) cause constipation. There is no way around it. You will be constipated, and probably bloated to the point of pain. But there is hope my friends...and if you are prepared for this battle, it is much easier to win.

Here are my suggestions after recovering from 4 spinal surgeries for getting your bowels moving.

Please note, everyone is different, and it is extremely important that you do not strip your stomach/digestive system by over dosing on these “motivators.” Be careful, and try a little at a time of the medications (eat as much natural fiber as possible, you can’t “overdose” on applesauce, prune juice, or Fiber One cereal). None of these methods are that pleasant, but the more fiber you eat, the better. You will most likely be bloated, and that bloating can be as painful as the pain from your surgery. The sooner you get your bowels moving, and the bloating under control, the better.

****The NUMBER ONE WAY to fight constipation is WALKING. Walk as much as you can, I know it’s hard those first few weeks, but it is ESSENTIAL to helping your bowels start moving.****

Start out with the high fiber diet (especially the prune juice), and the Dulcolax (laxative). Go to the stronger over the counter “helpers” from there if that is not enough.

After trying all of the below, and you are STILL unable to go to the bathroom for more than a day, CALL YOUR DR. It is dangerous and can cause serious health issues if you are completely blocked for too long. You need to go, at least a little, EVERY DAY.
Things to Try:
LOTS OF WATER and GatorAide
PRUNE JUICE (drink as much as you can, 3 large glasses a day at least)
Dulcolax
Fiber One Cereal (the higher the percentage the better) Try to eat it 3 times a day.
Applesauce
Enemas
Suppositories
Miralax
Colace
Milk of Magnesia


TIPS:

1. When taking the heavy pain killers like Oxycodone or Hydrocodone, take a Colace (stool softener) with every dose. It helps fight the massive amount of constipating side effects of the drug you are taking. You may even need the dulcolax (laxative) in the beginning.

2. Try to avoid eating Fiber foods that cause gas and bloating, such as BeneFiber, broccoli, cauliflower, and beans.  Although those examples are rich in fiber, there are some types of fiber that cause more gas than others, and can make your bloating worse.
-Some examples of foods that don’t cause as much gas or bloating are FiberOne Cereals, Applesauce, and Prunes.

3. Even after you’ve gotten your bowels moving, continue to take either the colace or dulcolax (depending on how you’re doing) every day. Keep drinking at least a glass or two of prune juice every day. The key to not getting “blocked” again is staying on top of the problem, by continuing to eat lots and lots of fiber. As long as you’re on the heavy pain killers, keep eating that high fiber diet and you should be able to keep yourself “moving along” with a lot less discomfort.

4. Remember, the NUMBER ONE side effect of ALL the drugs you were on in the hospital, and are taking at home is CONSTIPATION. Just because you're going to the bathroom, doesn't mean you're not constipated. Until you have painless and "regular" bowel movements, you are constipated. 

5. And finally, KEEP WALKING. Even if it’s just 5 minutes at a time. Walking is essential to a healthy, and less bloated, recovery.

P.S. You can click here to view this blog entry as a PDF file that you can print.

7 Months Post-Op!

Another month, another anniversary...and more progress! Here is where I am at 7 months post-op:

-I am only taking gabapentin for my residual nerve pain, 2 times a day

-I am no longer taking any muscle relaxer, (which was my goal last month!)

-The massage therapy I've been getting every other week has really reduced the tightness in my shoulders, and I am having less and less discomfort and pain in my left "problem" shoulder.

-I am able to roll completely over (I know, I'm a big baby now!) which I'm excited to try out in a pool, to try swimming. I didn't want to try swimming until I could easily roll over, and roll back up. It also allows my massage therapist to reach my back for the first time in 7 months, and she has been doing very, very gently massage that has really relaxed my back muscles and eased their tension.

-I am working longer hours, which means I'm sitting in my office chair for hours and hours each day. While my nerve pain is still most irritated when I do this, the moment I stop sitting there the pain goes away. Before surgery, if I sat in any chair, I would have bad pain, that would last for hours, or sometimes the rest of the entire day, well after I got up from that chair. So while it's still there, I know it's getting better because of the length of time I'm able to tolerate now, and the fact that it doesn't linger on and on. I almost never have pain sitting in any other chair now. Restaurants, coffee shops, movie theaters, or cars, it doesn't matter.

Charlie fresh out of the "tub" and none too pleased 
-Because all that physical therapy is paying off, I'm a lot more flexible at this point ! I can reach the floor by carefully squatting. It doesn't hurt and I'm strong enough now to balance that way if I need to. A few months ago, it was too hard to do this, and I didn't have the muscle strength to balance. It's funny how I almost never notice my fusion except when I do something like that. I now realize how much having a flexible spine goes into balancing, when I feel myself leaning dangerously to the side or to the back, and it takes all my might not to topple over like a pine tree. Building up my core body strength has really helped with movements like that. The only other time I really notice my fusion is when I give my dog a bath. The sink is just a little too low for me to reach down into it. I caught myself on Saturday trying to bend over to shampoo Charlie, and realized I had to bend at the knees when my back refused to budge. It must be the way a scarecrow feels! Like a scarecrow, I'm attached to these rods that keep me completely straight. But, like I said, I don't notice that feeling very often, and when I do, I just find a new way to do what I did the old bendy way.

-I do get worn out still, pretty easily. But I definitely have more stamina than a month ago. When I have a bad, or even just a very tired day, I just make sure to baby myself and not "push" myself. My body is still healing, and if it needs a day here and there to just rest, well, that's okay.

Overall, I'm doing wonderfully. I look back at December 27th and can't believe how far I've come since that scary day. It is so freeing not to have that surgery hanging over me, and to be able to go out and live my life again. Before I know it, it'll be a year behind me and I'll be even stronger than I am now.

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.

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"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.”
                                                                                        -Anonymous


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.