So You Think You Can Dance . . .

Haven't posted since just before Thanksgiving - the holidays kind of snuck up on me and it's been all I can do to keep up with all the goings on. Hope everyone is enjoying the season and making merry as best you can!

I've continued with my walking practice - twice a day, a half mile each outing, three times a week. It's been tricky since winter is finally upon us, and we have snow on the ground and ice everywhere... I have to walk slower and more cautiously - but it's been wonderful to get out in the fresh air.

Wish I could say my progress is moving foward in leaps and bounds, but truth is - it's more like doing the Cha-Cha : Three steps forward, three steps back with a little side step every few beats.

My limb is definitely healing. My body is getting accustomed to the prosthetic. My brain is figuring out how to get things done in ways that test my imagination and my patience :)

First the Three Steps Forward:

1) Remember the 45 minutes dressing ritual of a month ago? I got it down to less than 15 minutes!!

2) And the Salt issues I worried might plague me forever???? Now I can eat a whole Papa Ginos cheese pizza without having to do the "Ugly Stepsister trying on the glass slipper" routine to get my prosthetic on the next morning! Bring on the Chinese Chicken Wings and Crab Rangoons!!!

3) Every day something new (and wonderful) happens - and I discover that I can do something I couldn't do just the week, or day, before. Like sit cross legged like a lady, or take a step up onto the sidewalk with my fake foot leading.... or manage to get to the phone before it stops ringing! It's amazing.

Now the Three Steps Back:

1) My prosthetic just doesn't fit right, and it's too soon to get a better fitting one made. That makes for less stability which means I am more wobbly than I should be and my limp is outrageous. Think Marty Feldman in Young Frankenstein.

2) While I can do more things, I've learned that many things are better done without the prosthetic - the NFB is cumbersome, tiring and inflexible - I've learned that I can pop it off and scramble around more quickly and safely when doing things like housecleaning, wrapping gifts, making the bed, ect., but it's difficult for other people to watch. They don't want to be reminded that I am limbless. So I find that I am sneaking around doing my thing when no one is around to feel sorry for me. While I'm reveling in my ability to do things for myself, no matter which way I do it - I am subversive about it. It's more than living a double life - it's more like a triple life. Susan on Crutches, Susan with a Prosthetic, and Susan the Side Show Freak. ; )

3) Being able to get around better means people (including myself) forget what a struggle it is and expect that I can do things I simply can't. I can walk up an incline, but I can't walk up stairs or downstairs, but one at a time like a toddler. I can walk around a large store if I hold on to a cart, but I'm slow as molasses and elderly shoppers and harried moms just smash their carts into me if I hold them up more than a few seconds. I can wear my prosthetic for hours at a time, but at some point I have to take it off and rest the limb - but it's frowned upon in a movie theater or a restaurant. So I don't get out much more than a few minutes at a time and I can't stay anywhere for very long.

Now the Side Step :

I've recently been diagnosed with depression. Yep, me - Ms. Positive Outlook - Ms. Pull Yourself Up By Your Boot Straps - Ms. Ain't Nothing Gonna Knock Me Down. I wasn't looking for a diagnosis, and I fought it as strenuously as I could. Drugs and therapy are recommended. I am still not convinced and will have to talk to my primary care about it in January. That's all I wanna say about that. Sidesteps are the trickiest part of the dance to learn . . .

And so, who knew you could dance the Cha-Cha just four months after losing your leg???? :)

I've asked myself why the Endurance Team Event is so important to me right now when I have so much going on just figuring out how to be me . . .

And I have several very important reasons:

So many children, and adults - and their families - are living with NF1 - too many - doing the best they can to have happy productive lives in spite of this condition. My friends here with pseudorthrosis of the tibia are closest to my heart . . .

Jade - who is beautiful, 21, and has psuedorthrosis of the tibia as well as a shunt to relieve fluid in her skull. She'll be having yet another tibia procedure in Jan. She writes me that she knows she is traveling the same road I have and is facing the ultimate question about keeping her leg.... this young woman who like all young women is wondering about her place in the world - getting married perhaps, having children, a career, an independent future - and unlike most other young women, her NF1 makes her future seem very distant and precarious.

And there's Emma who is 7 years old, and is heroically battling a brain tumor as well as psuedorthrosis of the tibia.

There's also 4-year-old Kieran whose little tibia is bowing to the extreme, and whose Supermom works so hard to take care of him and his brother William (both have NF1) - while worrying constantly about what lies ahead for her little boys.

Shaylyn - the brave 6 year-old, whose family has struggled and worked so hard to find a doctor and facility who can treat Shaylyn's pseudorthrosis in a way that is best for her. For them quality of life quite literally means doing the most difficult thing imaginable.

And 2-year-old Ayden who is going on 12 ; ) She is amazingly spirited and doesn't let her pseudorthrosis stop her from exploring her world even though her leg is braced and hurts terribly at times.

Darcy is 14 and having an Ilizarod Frame procedure very soon - his family's faith keeps them strong and his positive attitude and resiliance is inspirational - he has a future full of promise.

Sweet Melissa - whose memory I will walk in. A beautiful, amazing little girl who was taken from her family and friends too soon because of complications due to NF.

The 5k is important to me because I was once one of these kids, growing up with pseudorthrosis, surgeries, facing amputation and an uncertain future. My journey with pseudorthrosis is almost at an end. Walking the 5K event for the NF Endurance Team on my year anniversary will be my closure and a new beginning. But these kids, and so many others, are just starting out on the path - and so I want to do it for them because they deserve better options and a future with more certainty and hope.

I hope my family and friends will support the Children's Tumor Foundation - when I come A'knockin on your door asking for a donation. Money is tighter than tight - but put your change aside for a bit - in a jar or a can - and maybe by the time October rolls around you'll find you have $10, $20, maybe even $50 dollars or more, that can help fund research and education and all the good things that the Children's Tumor Foundation does.

Thanks for coming along on this journey and Happy Holidays!!!!

12 Weeks After . . .

Well, it's been an interesting week . . .

Just 12 weeks after the amputation, when I was feeling like I was moving forward, physically and mentally, I hit a wall. Hard.

The good news is that it was a tremendous learning opportunity, of which I hope I got the most out of. It would be dreadful to think I keep getting on this rollercoaster for nothing!

It all started when I had an adjustment made to the NBF. My limb is healing wonderfully, and I am feeling stronger every day, which meant I was able to wear my prosthetic for long stretches during the day - but I was running into a problem with the NBF becoming loose after a few hours. My limp would become more pronounced, my back would start to hurt, the limb would become painful. By the end of the day I was exhausted from the effort of trying to do my thing with a prosthetic that didn't fit right.

When I went to Next Step for a follow up, they made several small adjustments, including putting some padding inside the socket to try to give me a better fit for longer stretches. The limb is shrinking quicker than expected. Making a new socket isn't an option at this point because I've only had it a short time. They are incredibly expensive. So, I had padding put inside the socket and was able to achieve a snugger fit.

What I wasn't counting on was that my limb was going to object so strenuously to the adjustments! It took a week for it to become accustomed to the new shape and fit of the socket, which aggravated the nerves and brought back much of pain I thought was finally starting to receed.

I became depressed, and frustrated with this setback - and while I could wear the NBF longer during the day without it becoming as loose, and while my back got some relief and my limp became less of an issue, every night when I took the NBF off my leg would scream with pain for hours - which meant I got very little sleep, if any. That in turn meant I was less able to handle the pain the next day, and I started to feel angry. About everything. Especially about not being able to walk my half-mile every day.

Then after a few days I noticed that the NBF needed yet another adjustment. It had become too short. I needed to go back to Next Step to ask them to adjust the length this time. Jason at Next Step was able to take care of that fairly easily, but more than that, he and Matt both took the time to sit with me and talk about what was going on, and how I was handling these setbacks.

Turns out I wasn't handling it very well. So, an attitude adjustment was also in order. They made it pretty clear that despite a positive attitude and a "get up and go" outlook, my body and my limb need to do whatever it is they need to do to get through the healing process and I best just go with the flow. While I may be months ahead of schedule in lots of things, my limb still needs to do it's thing and it can't be rushed. Basically they said I was doing great, but I was pushing myself too hard. On the one hand, physically I am months ahead of the recovery curve - but on the other hand, my mind still has a lot of processing to do about what has happened and what it all means.

So, I came home and put together a new game plan. I still walk, but not every day - every other day will have to do for now. I still clean and cook and shop and cart the kids around, but I don't do it non-stop all day every day. I still have goals and dreams and will still work towards them, but I will do it in small steps, instead of trying to rush headlong into it.

Part of the problem was that I just want my life (and John's life, and the kids lives) to go back to the way it was before the surgery, to be normal again..... and then I had to face the fact that no matter how fast I do it, or how hard I try, our lives can't ever go back to the way it used to be. Things have changed, and the sooner I face it and learn to live with it, the better this will go for all of us.

I was equating a full, rich, happy life with having two legs. I wasn't allowing that I might have a full rich happy life as a one-legged person. After of years pretending I didn't have pseudorthrosis, I was now pretending I didn't have just the one leg, or at least trying my damnedest to make others think I was two-legged. Dumb, dumb, dumb.

I have one leg - I have a wonderful prosthetic that can support me in my new life - I will be well, and adjusted and my handicap will become less the focus of my life in the future. But for now I need to let things happen in their own time. Being strong doesn't mean being able to do it all - having a positive attitude doesn't mean having to deny what has happened.

So, I am walking a half-mile every other day for now . . . I am also paying better attention to my eating habits and making sure I get enough rest. I have decided that I will not burn in hell for eternity if I take a short nap every afternoon. I am going to bed earlier and resting my limb more.

I will get where I want to be - just not today. :)

And that's fine.

It's The Other Ten Percent . . .

12:05 a.m.

Not blogging tonight - I've got the blues. Didn't walk today either. Took a day of rest after two days of walking . . . I did pick my event though, I will be walking a 5k in Hartford, CT on October 9th, 2010 (exactly one year from the day I got my "real" fake leg). More info soon.

Some days it hits me hard. I think I manage to keep my chin up 90 percent of the time. The other 10 percent of the time it's all I can do to face facts. Fact is - I miss my leg.

A Half-Mile in 15 . . . .

12:12 a.m.

Woke up Sunday morning to more rain . . . but got the NBF on without any problems so I put on my gear and headed out the door. John (the fiance) came with me and we set out to walk a mile. After the first 1/4 mile I was feeling tired already, and couldn't figure out why . . . then John reminded me that I was keeping up with his steady pace, which was more like a stroll. He claimed he wasn't slowing down for me. Yahoo! I was limping, but I was keeping up!!!

After doing a half-mile in 15 minutes, I decided to take a rest. Last week when I walked a half-mile it took me 30 minutes. Most of that was spent figuring out how to negotiate inclines - both downhill and up. Today was easier than last time, especially the uphill portion, and I was really starting to feel like I found a groove . . .

With the first half-mile done, I decided that there was nothing wrong with me breaking up my one mile walk into two half-mile walks taken at separate times of the day. After 15 minutes of strenuous activity, I need to take off the NBF and check the limb for skin irritations - if I end up with blisters or sores on the limb, that means I can't wear the prosthetic at all until they heal; so not only would I lose a day or two of walking/training, but I would not be able to do the usual day to day things that I need to do without crutches, like errands, laundry, cleaning, etc. A small setback like a blister really interferes with life in general. Splitting the mile into halves is a good way to ease into it without stressing the limb out too much.

I am really happy with the way the walking went today - I still am walking head-down because I am so cautious of where I step. The thought of tearing my eyes away from the sidewalk, and the fear of stumbling over an acorn or a crack in the sidewalk, is almost paralyzing. But, every now and then I would take a few steps, head up, just to see if I can practice trusting my prosthetic, and myself, to get me where I want to go without falling down.

Every step I take I am amazed at the mechanics of walking. Of all the little things your body does, your eyes, your ears, your trunk muscles and arms.... everything is engaged, and you don't even realize it. Seems like years ago since I just got up and walked without having to think about it. I wonder if it will ever become second nature again, or if it will always feel like so much work.

Tomorrow morning I will be up and out the door as soon as possible. I felt so good after my walk - my body is craving the exercise. I think I am doing pretty well considering that I have had no physical therapy since the surgery, other than the exercises I looked up on the internet. I really should be in PT, especially to work on going up and down stairs - which I still can't do - but at $75 bucks a week, I simply can't afford it. I'm hoping that doing stretches before and after walking, and the walking itself, will help make up for the fact that I am not in PT, and get me back into the shape I was in before my surgery.

I did realize today that there is a little downside to the walking . When I get done, I have to take the prosthetic off and rest the limb for at least an hour or two. It can be so frustrating to do all that work and then have to sit on the couch doing nothing for an hour. To be able to walk a half-mile, uphill, is a great accomplishment at this point, but it's a bitter sweet victory when afterwards you're back to being totally dependent on crutches or a wheelchair. The prosthetic truly is my New Best Friend, and like all friends, it should not be taken for granted!

Again, it's the one-legged, two-legged, brain adjustment. All day, every day.... switching gears and trying to figure it out. Who knows, maybe all this walking will give my brain a chance to sort it out on it's own . . .

Salt is the ENEMY!!!

12:27 p.m.

UGHHHH!

So today is day one of committed walking. Woke up to pouring, and I mean POURING rain - but I'm thinking no big deal because I have the awesome golfing rain gear that John bought me last year. I can still walk in the rain, as long as I be careful not to slip and fall. Rain is tricky as heck cuz I can't feel my footing with the NBF and when I start to slip, or hit some slick spot, I don't know it until I'm taking a header towards the pavement. So, yes it's raining, but I'm rearing to go, so I'm up and out of bed at 8:12 a.m.

Now getting dressed is like manuevering an obstacle course at this point in my rehab.... can't sleep with the NBF on, and training my brain to switch gears from being a one-legged person to a two-legged person can be difficult without coffee first....

1. Grab my crutches and gather the clothing I want to wear
2. Undress
3. Unwrap the leg from the ace bandage I need to wear to shrink the limb
4. Put the gel liner on the limb
5. Put on my socks - prosthetic sock for the limb, matching socks for my right foot and then the left foot sock goes over the fake foot on the prosthetic.
6. Put a shoe on the prosthetic using the gigantic shoe horn before putting the leg on
7. Dress upper half of the body
8. Fit pantleg on over NBF before putting pants on
9. Put limb in NBF (which includes another gel liner up to the thigh) and stand there for three minutes to see if it fits comfortably. If not, take leg off and change prosthetic sock to thicker or thinner, accordingly.
10. Put limb back into prosthetic and wait another three minutes for it to settle.
11. Stand there like a goofball, happy that it fits, and freezing my butt off since I still only have my undies on and one leg in my pants.
12. Put good leg in other pant leg and pull up my britches.
13. Put right foot in shoe that matches the shoe on the NBF.
14. Hobble around the room for a few minutes to wake up the limb and hope the pain goes away..... if it doesn't, then just be happy I'm upright and gear up for the decent downstairs to the kitchen.

And VOILA, in a mere half-hour to 45 minutes, I'm dressed! Of course I am not showered (that is another story altogether) my hair is a mess - and who has time for make-up after all that????

Except for this morning...... I ate too much pizza last night and my limb swelled about a 1/2 inch too big for the NBF and I could not get the NBF on to save my life!

Now it's 12:47 p.m. and the NBF still doesn't fit. Drank gallons of water and had to re-wrap the limb in the ace bandage, elevating my limb, hoping the swelling will go down so I can try getting the NBF on this afternoon.

I guess pizza is now on my list of foods to avoid if I want to be sure my leg will fit every morning.... along with Chinese Food, Cheese, KFC, Mexican, French Fries, and just about any other kind of take-out food known to man.

So, first morning of training didn't go so well . . . and I have so much to learn about this limb of mine. But I did manage 45 minutes of physical therapy exercises before my low-salt lunch. . I will get that damn NBF on before nightfall, or my name isn't Keegan :)

Putting It All Together . . .

Friday the 13th seems as good a time as any to do something a little risky, so here goes nothin'.

Just created this blog as a way to keep track of my progress as I get ready to sign up for a 5k walk for the NF Endurance Team. The immediate goal is to choose an upcoming event that I can participate in sometime within the next year.

I am only three weeks into learning how to get around with my prosthetic leg (which, going forward, shall be referred to as my "New Best Friend" or NBF for short...) and it is not going as quickly as I'd like. Meanwhile, short term goals are: 1) to create the blog and 2) begin walking every day, logging in my time and distance as I go along.

I am scared to death that I am biting off more than I can chew . . .

BUT, I've made up my mind to do this, and when I decide to do a thing - I do it.

Now that I've put it down in writing, it's real. Scary part #1 , over with!