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[Worzezterlire]

Update on the walker.  I actually have been so sore for 24 hours that I got up and saw a paper Dr D gave me that said “motion is lotion”.  So I decided to get up on my walker and walk around.  I took 100 steps total, a bunch of small laps in my hotel room.  It felt AMAZING.  I can almost take normal steps while offloading enough weight!  So yes, the walker is easy to use ONCE it is correctly set up for your height.  My PTA was 5’7.5 so she set it up so that she was comfortable in it.  It works for me because my arms are insanely long despite the lower setting.  Standing up straight feels super comfortable and I would do it 24/7 if not for how tiring it can be.

So the walker has suddenly become super useful to use.  I may try to avoid my wheelchair for a few days entirely to see how my pain goes away!  The more you move the more the pain goes away.  I’m almost on the verge of tears because I was on max painkiller and then threw some extra Tylenol on top and it wasn’t enough.  Now I feel just slightly sore but it’s a comfy sore.

So I recommend the walker at the one week point.  Don’t just sit in bed all day.

[V21]

Update on the walker.  I actually have been so sore for 24 hours that I got up and saw a paper Dr D gave me that said “motion is lotion”.  So I decided to get up on my walker and walk around.  I took 100 steps total, a bunch of small laps in my hotel room.  It felt AMAZING.  I can almost take normal steps while offloading enough weight!  So yes, the walker is easy to use ONCE it is correctly set up for your height.  My PTA was 5’7.5 so she set it up so that she was comfortable in it.  It works for me because my arms are insanely long despite the lower setting.  Standing up straight feels super comfortable and I would do it 24/7 if not for how tiring it can be.

So the walker has suddenly become super useful to use.  I may try to avoid my wheelchair for a few days entirely to see how my pain goes away!  The more you move the more the pain goes away.  I’m almost on the verge of tears because I was on max painkiller and then threw some extra Tylenol on top and it wasn’t enough.  Now I feel just slightly sore but it’s a comfy sore.

So I recommend the walker at the one week point.  Don’t just sit in bed all day.

Thanks for the advice man. In Greece, you can use a gravity treadmill that allows you to walk a bit everyday. Of course, the more you walk at home with the walker, the better. I'm just reaaally worried about bending the nail because of not using it properly. I even took the one of my grandmother and started practising and weighing myself lol.

[Worzezterlire]

Thanks for the advice man. In Greece, you can use a gravity treadmill that allows you to walk a bit everyday. Of course, the more you walk at home with the walker, the better. I'm just reaaally worried about bending the nail because of not using it properly. I even took the one of my grandmother and started practising and weighing myself lol.

I’m with you with regard to worried about bending the nail.  I’ve been put under the impression it’s hard to do while the nail is barely extended e.g. 6mm like mine is now.  I’ll be in PT next week and I asked them specifically to use some scales to see how well I weight bear correctly.

[V21]

I’m with you with regard to worried about bending the nail.  I’ve been put under the impression it’s hard to do while the nail is barely extended e.g. 6mm like mine is now.  I’ll be in PT next week and I asked them specifically to use some scales to see how well I weight bear correctly.

I have done the test, being right now 74 kg. Standing with the walker I'm at 20 kg, and just doing transfers from chair to bed or WC I'm like 10 kg only. Besides, regarding transfers, I think that the weight is put on the calves if you keep a "seated" position, so it seems all is quite safe.

[Worzezterlire]

I have done the test, being right now 74 kg. Standing with the walker I'm at 20 kg, and just doing transfers from chair to bed or WC I'm like 10 kg only. Besides, regarding transfers, I think that the weight is put on the calves if you keep a "seated" position, so it seems all is quite safe.

Yeah I’ve noticed the “seated” position seems to be the one that PT really wanted me to aim for in transfers, and it feels really safe.  Standing up completely straight with 50+% weight on the walker also feels really safe and natural.  I think as long as I don’t get cky about it I should stay within the safe range the whole time.

[L8GrowthSpurt]

Update on the walker.  I actually have been so sore for 24 hours that I got up and saw a paper Dr D gave me that said “motion is lotion”.  So I decided to get up on my walker and walk around.  I took 100 steps total, a bunch of small laps in my hotel room.  It felt AMAZING.  I can almost take normal steps while offloading enough weight!  So yes, the walker is easy to use ONCE it is correctly set up for your height.  My PTA was 5’7.5 so she set it up so that she was comfortable in it.  It works for me because my arms are insanely long despite the lower setting.  Standing up straight feels super comfortable and I would do it 24/7 if not for how tiring it can be.

So the walker has suddenly become super useful to use.  I may try to avoid my wheelchair for a few days entirely to see how my pain goes away!  The more you move the more the pain goes away.  I’m almost on the verge of tears because I was on max painkiller and then threw some extra Tylenol on top and it wasn’t enough.  Now I feel just slightly sore but it’s a comfy sore.

So I recommend the walker at the one week point.  Don’t just sit in bed all day.

Hey HobbitMan - Great insight.  The extra challenge of Precice vs. Stryde seems daunting to me, but you are certainly hitting that extra challenge head on and crushing it! In talking with the professionals, my impression has been that the major differences between Precice and Stryde are often downplayed.  So, I very much appreciate your diary and all the updates to help me further assess what the reality is most likely going to be like if I take the plunge with Precice rather than wait it out for Stryde’s return. Can’t wait to hear about your journey home and hope your progress continues.  From my vantage point, you’re kicking ass.  Stay strong 💪

[BelowTheMean]

One thing I saw a lot on Precice journals a few years ago was that people had a lot of success walking in the pool, where they could weight bear. Getting in and out the pool isn’t easy though, and of course your incisions need to be healed to the point where they can be soaked in water.

I think you are very brave for going forward with Precice. It’s already hard enough with a weight bearing nail so I can’t imagine how much tougher it is without having full mobility. I suppose people have been lengthening with Precice for many years before Stryde went on the market and many managed to get the full 8cm and recover. Now that you’ve started the process, all you can do is to keep pushing and finish it! Best of luck throughout your distraction phase and beyond.

[TouchTheSkies]

One thing I saw a lot on Precice journals a few years ago was that people had a lot of success walking in the pool, where they could weight bear. Getting in and out the pool isn’t easy though, and of course your incisions need to be healed to the point where they can be soaked in water.

I think you are very brave for going forward with Precice. It’s already hard enough with a weight bearing nail so I can’t imagine how much tougher it is without having full mobility. I suppose people have been lengthening with Precice for many years before Stryde went on the market and many managed to get the full 8cm and recover. Now that you’ve started the process, all you can do is to keep pushing and finish it! Best of luck throughout your distraction phase and beyond.

Hey bro how’s your walking gait now that you’re 6 months post op

[Worzezterlire]

Hey HobbitMan - Great insight.  The extra challenge of Precice vs. Stryde seems daunting to me, but you are certainly hitting that extra challenge head on and crushing it! In talking with the professionals, my impression has been that the major differences between Precice and Stryde are often downplayed.  So, I very much appreciate your diary and all the updates to help me further assess what the reality is most likely going to be like if I take the plunge with Precice rather than wait it out for Stryde’s return. Can’t wait to hear about your journey home and hope your progress continues.  From my vantage point, you’re kicking ass.  Stay strong 💪

Thank you so much!  Honestly I suspect some doctors might start downplaying Precise now that they have no other option.  Even when I visited Paley, right before the recall, he said “well you might have to do precise instead is Stryde.  The only difference is you can’t walk”.  Which I would consider being both honest and downplaying it big time!  Hahaha

The fact that I truly can’t walk for another 3 months cannot he downplayed.  If I were on Stryde I would be walking (limping) now.  I can say one thing — I was told precise CAN be less painful of an experience overall than Stryde, since I’m not weight bearing the whole time.  Also the fact I’m never really walking while lengthening or consolidating probably lowers the chance I fall and create a catastrophic injury or complication.

I can’t admit I prefer this to Stryde.  This was my last chance for a long time to get this done, due to work and how my life has come together lately.  I had a small mental breakdown for a week when Stryde was recalled right when I was pulling cash together for it — I thought that I wouldn’t be able to do this surgery for half a decade.  When I heard precise was back, I jumped at the chance knowing full well how much less fun it would be.  I don’t regret Precise.  I would take Stryde in a heartbeat though.

One thing I saw a lot on Precice journals a few years ago was that people had a lot of success walking in the pool, where they could weight bear. Getting in and out the pool isn’t easy though, and of course your incisions need to be healed to the point where they can be soaked in water.

I think you are very brave for going forward with Precice. It’s already hard enough with a weight bearing nail so I can’t imagine how much tougher it is without having full mobility. I suppose people have been lengthening with Precice for many years before Stryde went on the market and many managed to get the full 8cm and recover. Now that you’ve started the process, all you can do is to keep pushing and finish it! Best of luck throughout your distraction phase and beyond.

Thank you so much, especially from another Dr D patient who went the full 8cm!  I read your journal end to end and I appreciated your insight on the journey.  I think I will go to an indoor pool where people don’t know me this summer and do walking laps sometime in July and August.

[Worzezterlire]

I walk 100 steps a day right now.  They want me to get to 500+ next week when I return home.  This is all on the walker.

Notes:

1. Standing on one foot with no other support for one second will HURT but it doesn’t mean it will bend or break the nail from one incidence.  I have the second largest nails in me, 10.7mm because despite being very tall for this I have small leg bone mass (despite normal arm size and a 7” wrist and above average shoulders… weird genetics).  These support 50lbs per leg.  Yet I weigh 160lbs and they let me for short periods of times stand straight up with no walker.  This means 80lbs per leg.  The nail won’t break from this if the weight is even and it’s not for too long.  especially while the nail is not very extended yet.  The more you extend the nail, the weaker it gets!  Putting exactly 51lbs of weight on a leg won’t suddenly make your leg snap in half.  I would have snapped my leg within moments of getting home otherwise.  Even transfers from bed to walker or wheelchair would be impossible.  You’re fragile but not like a porcelain plate.  This just isn’t Stryde though where you can walk and carry heavy things under your own power without any worries.  You’re on a walker (eventually crutches if wanted) but as long as you’re using the walker and not doing something really stupid or awkward, you are ok at all times.

2. Someone asked me in DMs about using bike pedals attached to a wheelchair for Physical Therapy.  Be careful with this but you’ll end up doing this in PT anyways.  Once you have surgery and done a few weeks of PT ask your own PT about what they recommend personally.  If you use Dr D your PT will be Mike Russell and I won’t be around long enough to get his opinion.  I’ll ask him on Thursday though and if I get a good sense from him, I’ll post it here.  Also, him and his PTAs are all really good!

3. Walk more, not less.  Walking really makes your legs feel better.  Also I’m supposed to spend more waking hours in a chair especially when working.  No working from bed even if it’s comfy

[V21]

I walk 100 steps a day right now.  They want me to get to 500+ next week when I return home.  This is all on the walker.

Notes:

1. Standing on one foot with no other support for one second will HURT but it doesn’t mean it will bend or break the nail from one incidence.  I have the second largest nails in me, 10.7mm because despite being very tall for this I have small leg bone mass (despite normal arm size and a 7” wrist and above average shoulders… weird genetics).  These support 50lbs per leg.  Yet I weigh 160lbs and they let me for short periods of times stand straight up with no walker.  This means 80lbs per leg.  The nail won’t break from this if the weight is even and it’s not for too long.  especially while the nail is not very extended yet.  The more you extend the nail, the weaker it gets!  Putting exactly 51lbs of weight on a leg won’t suddenly make your leg snap in half.  I would have snapped my leg within moments of getting home otherwise.  Even transfers from bed to walker or wheelchair would be impossible.  You’re fragile but not like a porcelain plate.  This just isn’t Stryde though where you can walk and carry heavy things under your own power without any worries.  You’re on a walker (eventually crutches if wanted) but as long as you’re using the walker and not doing something really stupid or awkward, you are ok at all times.

2. Someone asked me in DMs about using bike pedals attached to a wheelchair for Physical Therapy.  Be careful with this but you’ll end up doing this in PT anyways.  Once you have surgery and done a few weeks of PT ask your own PT about what they recommend personally.  If you use Dr D your PT will be Mike Russell and I won’t be around long enough to get his opinion.  I’ll ask him on Thursday though and if I get a good sense from him, I’ll post it here.  Also, him and his PTAs are all really good!

3. Walk more, not less.  Walking really makes your legs feel better.  Also I’m supposed to spend more waking hours in a chair especially when working.  No working from bed even if it’s comfy

Wow, that's interesting. I thought that, with your size, you would be getting the big nail

[Worzezterlire]

Wow, that's interesting. I thought that, with your size, you would be getting the big nail

Me too.  My PT was beyond surprised too.  My surgeon said from one angle it looked like 12.5 fit, from another it looked like it wouldn’t.  He said he would TRY to get 12.5mm in there but I woke up and he said that 12.5mm would have been just a millimeter or two too large and would have been dangerous.

I think frame is part of it, I have a medium frame overall (good shoulders, big torso, normal wrists) but small in others (small leg bones for my height).  So don’t assume just because you’re big that you’ll get the biggest nails.

[chasing_higher_dream]

I wish you all the best towards your lengthening journey, HobbitMan 

[Worzezterlire]

I wish you all the best towards your lengthening journey, HobbitMan 

Thanks, and to you as well!

Also I may probably get more sparse with my journal going forward now that my life is starting to return to a new normal.  Will give major updates.

Edit: I’m also fully productive at work, less than 2 weeks after surgery.  Pain and painkillers are not affecting my productivity.

[dexter1930]

Thanks last night was rough though.  Like 6-7 pain all night.  I just hit 4mm (5mm overall) last night and then slowly my legs got worse and worse.  Even this morning they’re not the best even after morphine and the Percocet.  Ronnie says I can take a tiny bit of acetaminophen with it so let’s see how that goes.  I hope it’s just that I need to ice them more.

Define easy my surgery was one week ago.  For PT in my hotel room I had to show that I could walk around on it with semi-normal steps, ten overall.  In the hospital I had to walk 40 feet down the hallway for them to consider me “fully ready”.  Despite that I don’t use the walker as much right now because I’m truly an expert at the wheelchair.  I plan when I go back home in a week to use the walker 50-100 steps a day.  I can give you a better idea then I think.

remember to stretch like crazy. I forgot to stretch on the first 2 month and half and focused on walking too much, that mistake should never happen to any LL patients.

[Worzezterlire]

Went in for my 13 day follow up.  X rays look perfect so far, no concerns from the doctor.  Bone healing is average is which considered great — unlikely chance of early or late consolidation.  Stadiometer measured me at 176.5cm.  I’ve only lengthened 1cm as of this morning.

remember to stretch like crazy. I forgot to stretch on the first 2 month and half and focused on walking too much, that mistake should never happen to any LL patients.

I’ve been very good with stretching!  The only ones I’m bad at are the ones where I have to be on my stomach — my legs twist a lot and I need help.

[Worzezterlire]

12mm.  I feel slightly taller standing up in familiar settings already.  My legs don’t look any longer yet.  It’s all very subtle though.  I took my first shower today.  It was very hard to do standing up in a walker.  Slowing down on the diary because flying home was very difficult.  Sitting for 8 hours from Uber to airport to plane seat to long flight to Uber home… so much strain on my pelvis.  Not looking forward to flying two more times to see the doctor but it’s survivable, just unpleasant to fly this way.  I have 4 weeks before I have to worry about that though.

I suspect I’ll notice a lot more changes after the 30mm mark.

[L8GrowthSpurt]

Hey HobbitMan - Sounds like the trip home wasn’t horrible, but not fun either. Hopefully, you at least got to board the plane first based on the ole legs there! 😂.  I’m sure it is good to be back in a familiar environment.  When you have time for the next update, I’d be interested in knowing more (if you’re willing to share of course) about your pain levels and how much you’re using wheelchair vs. walker.  Also, how do you manage stairs?  I have stairs to deal with in any post-surgical environment and am paranoid about bending the nails by just navigating the stairs when I have to. Thanks for the update. Stay strong brutha 💪

[Worzezterlire]

Hey HobbitMan - Sounds like the trip home wasn’t horrible, but not fun either. Hopefully, you at least got to board the plane first based on the ole legs there! 😂.  I’m sure it is good to be back in a familiar environment.  When you have time for the next update, I’d be interested in knowing more (if you’re willing to share of course) about your pain levels and how much you’re using wheelchair vs. walker.  Also, how do you manage stairs?  I have stairs to deal with in any post-surgical environment and am paranoid about bending the nails by just navigating the stairs when I have to. Thanks for the update. Stay strong brutha 💪

Thanks!  If you have stairs and own a house (or staying with family) you can rent a chair lift like I did.  3 months was only $1500 total including installation and eventually the removal.  I might extend it to 5-6 months eventually as needed.

Pain levels are never super high.  After lengthening I am tight, the more I walk the better I feel.  I’m still utilizing the painkillers but in a week or two I would hope to be off them mostly.

[TouchTheSkies]

Thanks!  If you have stairs and own a house (or staying with family) you can rent a chair lift like I did.  3 months was only $1500 total including installation and eventually the removal.  I might extend it to 5-6 months eventually as needed.

Pain levels are never super high.  After lengthening I am tight, the more I walk the better I feel.  I’m still utilizing the painkillers but in a week or two I would hope to be off them mostly.

Well done bro, you’re doing well. Hang in there!

[5ft5]

Hi HobbitMan, I hope you're doing well. Since you're still on painkillers I wanted to ask if you think they would be a problem for a person who has GERD or similar stomach problems.

[Worzezterlire]

Well done bro, you’re doing well. Hang in there!

Thanks!

Hi HobbitMan, I hope you're doing well. Since you're still on painkillers I wanted to ask if you think they would be a problem for a person who has GERD or similar stomach problems.

That’s actually an interesting question I wish I could answer better than I’m about to.  It depends — have you ever been on opioids before?  Some patients get really nauseous on the Percocet so it could be at odds with your condition.  You’re also going to be on Valium likely as well as morphine (though this becomes more optional over time).

How do you fare with tylenol?  Percocet is half Tylenol and half Oxy, essentially.  I was given IV Tylenol at the hospital and it seemed to work.  Whenever I don’t feel like a full Percocet, I take a rapid release Tylenol instead, since I’m allowed to take a certain amount in addition to Oxy a day.  If you can handle Tylenol, it’s not as good as morphine+Oxy but it can make things manageable.

[5ft5]

Thanks!

That’s actually an interesting question I wish I could answer better than I’m about to.  It depends — have you ever been on opioids before?  Some patients get really nauseous on the Percocet so it could be at odds with your condition.  You’re also going to be on Valium likely as well as morphine (though this becomes more optional over time).

How do you fare with tylenol?  Percocet is half Tylenol and half Oxy, essentially.  I was given IV Tylenol at the hospital and it seemed to work.  Whenever I don’t feel like a full Percocet, I take a rapid release Tylenol instead, since I’m allowed to take a certain amount in addition to Oxy a day.  If you can handle Tylenol, it’s not as good as morphine+Oxy but it can make things manageable.

I haven't been on opioids before and do fairly badly with any kind of painkillers. The last time I had a tooth extracted, the doctor gave me some painkillers which ended up in me having dysentery lmao. I also consulted with my doctor and he told me if my stomach condition doesn't improve before a CLL surgery I could end up with ulcers or a hole in the stomach. Pretty stressed about it. I have very high pain tolerance but not really sure if I would be able to survive CLL with painkillers.

[156]

I haven't been on opioids before and do fairly badly with any kind of painkillers. The last time I had a tooth extracted, the doctor gave me some painkillers which ended up in me having dysentery lmao. I also consulted with my doctor and he told me if my stomach condition doesn't improve before a CLL surgery I could end up with ulcers or a hole in the stomach. Pretty stressed about it. I have very high pain tolerance but not really sure if I would be able to survive CLL with painkillers.

Idk if there's a correlation, but I used to have GERD issues years ago and this surgery was the first time I took any opioids. I had nausea for a while - first from the anesthesia, later on (about 2-3 weeks after going home) possibly from the Oxy. Dr. D's team was gonna prescribe nausea medications, but I tried ginger tea cuz I don't want to add to the already many medications I'm taking. Idk if it was placebo effect or what, but the nausea eventually went away on its own.

[5ft5]

Idk if there's a correlation, but I used to have GERD issues years ago and this surgery was the first time I took any opioids. I had nausea for a while - first from the anesthesia, later on (about 2-3 weeks after going home) possibly from the Oxy. Dr. D's team was gonna prescribe nausea medications, but I tried ginger tea cuz I don't want to add to the already many medications I'm taking. Idk if it was placebo effect or what, but the nausea eventually went away on its own.

Were your GERD issues resolved before the operation? GERD can be treated mostly and people make 80-90% recovery from what I've heard.

[156]

Were your GERD issues resolved before the operation? GERD can be treated mostly and people make 80-90% recovery from what I've heard.

Yes, haven't had any reflux issues or gastric problems for about 2 years now. Occasionally if I feel like a heartburn might be coming, I would quickly take the gel (idk if it's gel? it's like a thicker consistency) form of an antacid. Where I'm from, I take Gaviscon. I haven't had any reflux since I moved to the US 2 years ago so I never checked if they have something similar here.

[L8GrowthSpurt]

Hey HobbitMan!  Don’t have anything to add about the GERD convo 🥴, but thought I’d ask:  How goes the lengthening?? You crushing it even more now that you’re back home?  Any words of wisdom for wannabes like me and others about the first few weeks?  Starting to get tighter?  Bored with the process?  Other?  Hope you’re well.  Stay strong 💪

[Worzezterlire]

Hey HobbitMan!  Don’t have anything to add about the GERD convo 🥴, but thought I’d ask:  How goes the lengthening?? You crushing it even more now that you’re back home?  Any words of wisdom for wannabes like me and others about the first few weeks?  Starting to get tighter?  Bored with the process?  Other?  Hope you’re well.  Stay strong 💪

Sure!  Yeah I tried to stay clear of the GERD conversation since I know little about it, thanks 156 for giving more information on that!  After all the main reason I’m doing the diary is to help people decide if they want to wait or do precise now

Definitely already getting a bit tired of it all, and I’m less than a quarter through it.  But feeling taller day by day is motivating enough to keep at it.  To emphasize, it’s not pain or tightness that’s making me fatigued, I guess I wasn’t mentally ready for sitting in bed or in a chair all day.  Now that reality has set in, I do feel a bit uneasy.  But I definitely do not regret the surgery so far.

Tightness has not been an issue at all, but it usually isn’t for most people until 2inches (5cm).  Dr D predicted I might experience tightness around 1.5inch or so because of my hamstrings, but I’m only at 17mm as of tonight.  I might start getting tight around 3.5 to 4cm if I’m not on top of stretching.  Dr D usually has patients put on knee immoblizers around the 1.5 to 2 inch mark to sleep — he wants me to start them this week.

Worst case if my hamstrings prevent me from 8cm, I can always heal and rebreak in 6 months.  I’d hate to do that, but the fact I can definitely get to 8cm no matter what is reassuring.  He doesn’t think I’ll likely have to go that route though.

Big thing I can recommend to you is to build some upper body strength and stretch your hamstrings an hour a day NOW.

[Worzezterlire]

25% done with lengthening tonight!  I hit 19mm out of 79mm, reminder that I got 1mm for free from the surgery itself. So I’m officially 177cm at night and over 5’10 in the morning and throughout the day.  I’ll be 5’10 at night in another week.  It’s a big milestone for me.

My bandages from the operation are coming off and my scars are much smaller than I thought they would be.  Even the IT band ones are almost invisible.  I heal from scarring almost famously well, I told my surgeon that but he still warned me that legs don’t heal the same as elsewhere.  Regardless my Wolverine healing factor is clearly in play since the only cuts that are noticeable are the IT band ones.  I showed them to a friend and he said they looked like a minor scrape.  I’m very happy with Dr Debiparshad’s work so far.

I started wearing knee immobilizers at night to keep my legs straight which will help with hamstrings down the line.  It is not super comfortable but it’s manageable.

[Apollo676]

Hello,how is the pain overall ? How do you move in your everyday life,like to get to your physiotherapist or going to work,or even inside your house,as precise is not weightbearing ? Can you have some good quality sleep overall ? And how you better now than after the surgery ? Thx

[Worzezterlire]

Hello,how is the pain overall ? How do you move in your everyday life,like to get to your physiotherapist or going to work,or even inside your house,as precise is not weightbearing ? Can you have some good quality sleep overall ? And how you better now than after the surgery ? Thx

Pain is only present after lengthening and after waking up in the morning.  Right now and most of the time there is 0/10 pain, using the 0 to 10 painscale (0 being no pain, 3 being annoyance of pain, 5+ being distracting in daily life and 8+ being unbearable)

Morning: 2-3/10 max
First lengthening: 1/10
Second lengthening: 3/10
Third lengthening: up to 5/10
Rest of the time: 0/10 (about 22 hours a day is like this)

I work from home, I try to sit in a chair with my laptop as my surgeon wants me to but sometimes I cheat and lay in bed.  I program all day but also have a lot of meetings.  The thing I hate most is when I have to get up to do small things like go to the bathroom.  It’s a short distance but getting up is annoying and so if I get up I mind it less for big things, like going all the way to my car, driving, and getting out and doing something like PT, etc.  I just hate the transfers even if they’re not painful!  My legs itch a bit for the first minute after transferring as I use my legs, this disappears quickly though.  It feels like when you’re running and you get itchy in the legs because blood is flowing to them, but not quite as bad.

Definitely a lot better than after surgery.  One leg is weaker than the other but both are still a lot stronger than during the first week.  Sleep actually has gotten worse.  The week after surgery I was sleeping 16 hours a night but I sleep 8-10 hours now.  Usually I am tired before my final lengthening so I set an alarm for 3 hours and sleep 3 hours, wake up, do the final lengthening, stay up for a while as I wait for the pain to go away, and sleep some more.  I do get 8-10 high quality hours but never consecutively.  Probably need to start lengthening at earlier times of day and it would fix this.