16 Years Ago Today

Sixteen years ago today I went under the knife for my first leg lengthening procedure. I was just 11 years old.

(Here I’m getting hoisted by mechanical chair into a therapy pool. This is a pretty good view of the apparatus used to lengthen my leg back then.)

They say pictures are worth a thousand words so just take a look at some of these. There’s a big difference in the methods used now and close to 20 years ago. In 1996, the best technology available was an external fixator (or ilizarov) which used halos and pins. Although that way of lengthening is still around and used frequently, there is another option. The method I’m using this time is called the PRECISE nail. Although it’s pretty much the same idea – the key is it’s completely internal which makes it so much more comfortable and less painful.

(I’m not sure, but this may be the first time I got into my wheelchair and was taken out of my room. I don’t look too happy.)

(This is me and my brother before school one day.)

I had to attend most of 6th grade in a wheelchair. When I went out into public, we covered up my leg. An ilizarov is not an easy thing to look at especially if you’re squeemish or not prepared! The picture above would have probably been taken somewhere around 4 months after my surgery. To give you an idea of the difference, check out the next picture taken recently, less than 2 months after THIS surgery.

(This picture was taken at my friend Kacey’s bridal shower.)

How wonderful not to have a giant metal cage hanging from my leg! Not only for me, but for others who don’t have to look at it! I’m so thankful for advances in medical science. Of course I don’t regret having the first surgery and I wouldn’t tell someone who had to have an external fixator not to do it. But I’m excited for people like me who can have an easier time lengthening with this new device. What will they think of next?

My Adult Stroller

I can’t begin to think I know what it would be like to be permanently handicapped, but becoming wheelchair/crutch-bound for an extended period of time has given me a look into what that feels like. There’s so much extra planning before heading out into the world, just to make sure a place can accommodate you and you won’t inconvenience other people. Although, even when you think you have all the information you need, many times you don’t!

My friend Kacey and I wanted to go to the Pittsburgh Zoo one day, but my dad had taken my wheelchair to work with him accidentally in the back of his car. So I made the necessary phone calls to the zoo, making sure they had what I needed. I was given plenty of information: they had wheelchairs, but only a limited number. I could reserve one if I’d like. If I wanted a motorized chair I could order one through an outside company for a fee and they’d deliver it. The girl on the phone was very nice. I felt prepared.

So Kacey and I get to the zoo and I crutch my way to the second gift shop where they distribute the wheelchairs. With all the details the girl on the phone gave me, the one thing she left out was that their “wheelchairs” weren’t that at all – they were giant strollers.

“This is all you have?” I said to the teen working his summer away selling fluffy stuffed otters and penguin lollipops.

“Yea. That’s it,” he  replied.

“This is a stroller,” I stated. “You don’t have wheelchairs?”

“Naw. That’s all we got.”

In case you can’t tell from the picture, it was literally a giant stroller. There was no way I could help wheel myself, which is what I had been planning to do.

“But I did my part!” I wanted to scream. I did my due diligence. Called and got the information. My friend brought me all the way out here. It’s 85 degrees. Now we either leave or she pushes me around the zoo like a giant baby.

“It’s okay! I don’t care. It’ll be good exercise,” Kacey said. She’s not kidding. Pittsburgh is a very “hilly” city and the zoo is no different. There are many ups and downs and very few flat stretches.

“I feel so bad,” I whimpered. “I swear they told me they had wheelchairs. I can’t help you. You’re going to have to push the whole time.” While I’m a very small adult, I’m still a grown human. It’s basically like pushing 10 babies at once.

“It’s cool. Hop in!” she said.

Apparently I’m not too proud to be pushed around the zoo like a toddler on steroids, because we stayed and actually had a pretty good time. I just had to sit Kacey’s purse in my lap and buy her an extra water! Although some children looked at me like I was one of the exhibits, it was a great zoo day! The tigers growled and bit each other as they played in the water. A baby gorilla was apparently annoying its mother. First the mom held the baby in one arm while she climbed up a huge rock wall with her three other limbs. Then when the baby wouldn’t walk, the mom literally swung the baby in the air by its hand and plopped it right on her head! It was super cute. We watched them for like 25 minutes.

It all worked out for me in the end, but what if I had wanted to come by myself? Or what if a different handicapped woman wanted to come with her little girl? Those situations would not have ended in a great zoo day.

I’d bet my left crutch the girl on the phone is not handicapped, never has been and has never gone anywhere with anyone who is. If that was the case, she would have realized anyone calling about wheelchairs would need to know the very important detail that the wheelchairs aren’t really wheelchairs.

I called the zoo and asked for a manager the next day. I spoke to a woman who was very kind and listened to all of my concerns. She informed me that the zoo does have actual wheelchairs, but only two or three. They usually get taken out within the first few hours of the day. The rest are “industrial wheelchairs” AKA adult strollers. She said most of the wheelchairs they get are donated and usually fall apart after two or three trips around the property because of the rugged terrain. The industrial ones hold up better. She admitted I should’ve been informed about the giant strollers and she would talk with the people who handle the phones about being more sensitive and giving all of the pertinent information. I hope I did a service to anyone calling to inquire about wheelchairs in the future!

It’s not an easy world when you don’t have an able body. I don’t like feeling like a burden to my friends and family, even though I know they totally understand and I also know this situation is temporary. Trips out into society take extra planning and extra energy. But I am very thankful for the Americans with Disabilities Act and legislation that has made the world better for people with physical challenges. I need to use ramps, curb cuts, courtesy wheelchairs and automatic door openers. But when I don’t need them anymore, I’ll fully support funding for them and would gladly give more tax money so that we can make life a little easier for people who face serious hardships. Who knows? I could need those accommodations again and so could you.

A Life Lesson

Life is apparently better off of narcotics. This is something I thought to be true for a long time, but didn’t know from experience until recently. I had been taking oxycodone during the weeks following my surgery. I was taking much less than was prescribed to me, but I was still taking it for pain everyday. For the five weeks I was on it, I was cripplingly nauseous just about every other day, much more emotional than usual and had almost no appetite. Some days were okay, but overall it was doing more harm than good. About a week and a half ago I decided to stop taking it. It took six days and toughing it out during actual withdrawal symptoms, but I feel like a completely new and normal person! I have an appetite and am eating three meals a day plus snacks – something I haven’t done since before surgery! I’ve felt great going on six days in a row.

(I sent these before and after pictures as texts to my friend Kacey. I never really planned to share them with everyone, but they fit this post nicely! The one on the left was taken on a Wednesday when I was in the pit of dispair and at the height of withdrawal. I took the one on the right just 4 days later on Mother’s Day, exemplifying how wonderful I was doing! Quite the before and after!)

“All I needed was to get off of drugs and now life is great!” I joked to my physical therapist.

“Isn’t that a life lesson,” she said back.

We are still lengthening my leg everyday. That phase is not over. I have gained about 1.33 inches and am working my way up to 2 inches. The “pain” is totally manageable with Tylenol, but I wouldn’t really even call it pain. My leg is stiff, tight and tender in certain spots. I may get a jolt of pain if I roll onto it the wrong way or if I try to get up too fast, but mostly it’s just uncomfortable – which all things considered is not bad at all! It’s great because (if you’ve been keeping up with the blog you’ll know…) there is no equipment on the outside of my leg. It’s not swollen or anything either. It looks like my normal leg, with all the lengthening stuff hidden on the inside. So if I want to get dressed up and go out, I can wear normal clothes. I’m wearing a lot of stretch pants!

I’m now realizing I didn’t need as much to do when I was on oxycodone. Half of the time I felt nauseous, so I was just basically in my bed laying down watching movies or shows on Netflix. Now that I’m feeling pretty good, I’m going to need more to do.

As far as I can tell, I believe I’ll have about four more weeks here at home before I return to Chattanooga and back to work! That’s unless the doctor surprises me or something changes.

I know I’m getting better because I actually opened up my iTunes while getting ready for physical therapy, this morning! I hadn’t turned on music since my surgery. I sang and wiggled as I hopped around the room for a hairbrush and a pair of socks! Then I couldn’t stop singing. I jammed to the radio while at therapy!

With all of that being said, it’s still hard not to be your completely normal and independent self. It’s also hard to realize you still aren’t going to walk for 3 or 4 more months. But I feel like myself again! I can think clearly – and can eat food! That is a real gift!

Happy Mother’s Day

I’m so blessed to have the mother God gave me.

I certainly have been thankful for her for a long time, but going through this ordeal has reminded me what a remarkable and loving woman she is. There’s nothing like knowing your mom will support you before, during and after a tough decision.

Thank you for the big things… and the little things, mom.

Will and I love you very much!

Giving thanks for her today, as well as my grandmothers – who helped shape both of my parents into the people they are.

Happy Mother’s Day!

 This is my mother’s mother Grandma Vivi. (I’m not sure what we’re doing here, but it seems pretty silly!) She died of breast cancer when I was in 2nd grade. She was a wonderful grandmother and a great mom to my mom! I remember her today.

Below is my dad’s mother Grandma Arlene. This picture was taken when she and my Papa were visiting my family in Toledo, Ohio, where we lived at the time. She had a stroke in the car on the trip home. I don’t think I was quite two yet when she died. I don’t remember her and that saddens me. She’s the only grandparent I can’t remember, but I know she and my dad were close. He’s the best and has told me stories about her. I’m thankful she was a good mother to my dad and I’m thinking of her today.

A Quick Update

Just a quick update since we went to Baltimore for a checkup with the surgeon on Monday.

The good news is Dr. H is happy with the flexibility of my knee. It can still bend more than 90 and sometimes 100 degrees. I’m also able to make it go completely straight. As I’ve said before, those are two really important things so that is great. Monday we also hit 3 centimeters of length. That’s about 1.1 inches. (It’s fun to measure using the metric system and the English system, because you can count more milestones!)

(Most recent x-ray taken Monday.)

The bad news is my bone still isn’t regenerating fast enough in the gap. So Dr. H told us to slow lengthening again. Two weeks ago, he slowed us from lengthening 1 mm a day to alternating .5 and .75 mm every other day. Now we’re down to .5 mm everyday which is half as fast as we were going several weeks ago. Five centimeters is 2 inches and that’s what I need total (if not a little more). So at this pace that would be 40 more days of lengthening. What can you do?

The news I should be more excited about is that Dr. H basically wants me to eat everything in sight. Medicine takes a toll on me. I tried to get off of oxycodone once before, but had to start taking it again. Although it helped with the pain, it made me horribly nauseous quite frequently and lowered my appetite to almost nothing. I lost some weight. But the Doc says (which I didn’t realize until Monday) that your body needs calories to heal. Healing is an activity and to regenerate bone it takes calories. Also, if I don’t eat enough then my body will start to eat my muscles (I think that’s how he explained it), and I need my muscles to be strong and stretch along with me. So I got off the oxy on Sunday and have been very successful on Tylenol and while my appetite is not up to snuff quite yet, I haven’t been nauseous so I figure we’re on the right track!

(After physical therapy today I ordered this from the pizza place next door. Huge Italian hoagie and bacon cheese fries. Granted – I only ate about five bites of each, but it’s a start!)

Also to help my bone regenerate, I have to use this ultrasound machine. I put it over where the gap is in my leg for an hour in the morning and an hour at night time.

(This is the ultrasound machine. If you’re wondering, the X on my leg marks where we have to set the magnet for lengthening. I have to keep redrawing it. It’s been there for five weeks now. My mom said, “Why don’t you get a tattoo of that so you can remember the experience?” I said, “Then I’d have two stupid tattoos.”)

I just received it on Saturday, so we’ll see if it does any good when I go back to the doctors in another two weeks.

This whole thing is not easy, but I’m hanging in there the best that I can. Now I just gotta try to stuff my face with food. Not the worst order you could get from your doctor!

(While my dad and I were driving to and from Baltimore in one day, my sweet mom went to the store and bought four pairs of tennis shoes for me to pick from, since she knew I needed them. These are the ones I chose to keep!)

Oh yeah, we are past the point where a 1 inch lift still works on my shoes. All of the shoes I own have a 1 inch lift and that’s now definitely too much. SO I HAVE TO BUY ALL NEW SHOES! I was pretty sure we’d make it to this point, but now it has really come! I already bought about four pairs of shoes… but of course I need more. Soooo many more! If you see a crazy lady in a wheelchair at Macy’s who’s foaming at the mouth in a shoe-induced Carrie Bradshaw-like stiletto coma… that’s just me.

Also, if you know a woman who wears a size 6 1/2 and happens to have a short right leg – I can hook her up! If she’s out there, she’s got about 30 pairs of shoes coming her way (gently used)!

You Gotta Have Friends

I sat on the stool – heart pounding, palms sweating – waiting for a break in conversation. What would she say when I told her? I took another huge gulp of ice water and shoveled some scrambled eggs into my mouth. We talked about silly memories from college, my job and her upcoming wedding. The wedding I felt I was about to complicate.

“So… I have to tell you something,” I finally got out.

“Okay?” Kacey said.

Fighting back tears, then eventually just letting them pour out, I told my best friend I was contemplating another leg lengthening surgery. This was the beginning of December on one of my trips home to Pittsburgh. She and I were eating at a popular breakfast joint – sitting at the bar. I had recently scheduled a consultation with the surgeon for that upcoming February. I had only discussed my thoughts with my mom, dad and boss. I was so emotional about possibly taking on this endeavor and it became more real as I discussed it with more people.

My nervousness about this particular conversation was rooted in becoming a burden during a time that is so special – a wedding. Kacey’s would be held in September with me as a bridesmaid. Of course the planning, showers and the bachelorette party would happen during the months beforehand. But my leg lengthening was a now or never situation in the timing of my life. I felt horrible that my possible upcoming surgery would cripple me – likely through many rights of passage for my friend. I thought Kacey might be disappointed or angry with me for putting all of this on her during a time when she should be the focus.

“I just feel so bad that this could possibly interfere with stuff leading up to the wedding,” I pushed out through a terrible ugly cry. “I want to help and be able to do everything, but I’m not even sure when I’ll be able to walk. I don’t want you to think I don’t care about you, but if I’m going to do this I have to do it now.”

“SHUT-UP!” she said. “Don’t even talk like that. Out of anyone I know you would do anything to be there on my wedding day, even if you had to wheel down the aisle!”

We talked more and cried more, looking pretty silly in this casual diner! During that brunch, Kacey never once hinted that I had complicated things for her or expressed any disappointment in my timing. All she did was give me love and support – that day and ever since. She listened to me and knew what was in my heart. She understood that I had to have the surgery, but would move mountains to make sure I was involved in all I could be for one of the most important days in her life. That’s one of the perks of having a best friend – you get each other.

(Kacey and Nate came to visit me in Chattanooga back in April of 2011.)

After that consultation with the surgeon, I of course decided to have the surgery. Now I know that all of my anxiety about Kacey’s wedding went to waste, because I’ve been able to help plan her bridal shower and bachelorette party and I will get to attend both. It seems by September, I will be able to walk and maybe even dance at her wedding!

(Here we are at a recent shopping trip to Target!)

Through this experience Kacey has done more kind and caring things for me than I could list, but the most impactful to me – was listening and giving me her support at the moment I needed it most. I hope to return the favor anytime she or another friend needs it.

****To my other amazing friends who’ve made me feel so loved through this whole thing… I love you and appreciate you, too! I plan to write about all of you at some point!****