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[Maison]

I'm sorry for asking a stupid question.
I saw a video of a person walking with crutches about two weeks after the operation, so I thought that there was a little chance that you could walk to work with crutches.

I expect to reduce my work days to twice a week.

Anyway, thank you for telling me that you are using UBER.
I didn't know about Fallen774, so look for his diary.
I wish you a good recovery.

[Lalbadshah]

I'm sorry for asking a stupid question.
I saw a video of a person walking with crutches about two weeks after the operation, so I thought that there was a little chance that you could walk to work with crutches.

I expect to reduce my work days to twice a week.

Anyway, thank you for telling me that you are using UBER.
I didn't know about Fallen774, so look for his diary.
I wish you a good recovery.

Brother, I really don't know how old are you but I wish I can help/guide you because you seem a bit confused/mistaken. if you want I can pm you my number and you can call me and I can guide you. Watching a video of a guy walking has got nothing to do with what you are expecting. I walk for many many minutes in my room (like 20-30 minutes every day), but I am still in lot of pain, reduced sleep, stiffness , pain medicine, very challenging PT routine, irregular bowel movement etc. LL is very tough on your body, soul, mind and it is so tough that being able ti be productive  at work is IMPOSSIBLE, trust me, it is IMPOSSIBLE. you can work but your hours will be so irregular, your output so low, your behavior so unpredictable that your career may end at that job (worst case, fired) or at best case you will be a marked low performer who will be the fall guy in next layoff or promotion cycle. Being fired is most likely.  In other words, when you do LL, LL becomes your full time JOB, and you cannot concentrate on any other full time job, part time? maybe. Let me give you another example: when you are inside a ost home o watching a movie where winter snow is falling in a nice forest in finland, snow all round, things seem so beautiful from in there, then if you are made nked and put out there you feels what it feels like. It is  still beautiful, but now you also feel the pain part of it the other side of the coin.

Note: I will be busy this week, can talk next week if you want to.

[Maison]

I understand that you want to warn me strongly about this surgery.
I have some things I can't write here for personal reasons and sent you a PM.

[Movie]

Lmao Lalbadshah your last couple replies to Maison have made me laugh more than it should have some guys are just not realistic with the process, he probably saw my video of walking in crutches in my 2 week post op vlog update... but I only walked a bit on crutches I wouldn't feel confident walking a lot on them right now let alone go to work if I had a job.. smh

[InFullStryde]

My honest opinion, having gone through CLL, is that the earliest you can imagine going back to work is 1 month....and even that is VERY early and not a guarantee.  You experience so many different types of issues when going through the CLL process and it requires your full attention and resolution effort.

I advise planning 3 months off work, minimum for the most successful and bearable CLL procedure.

The exception to taking off work is to do what I did which is work remotely from home if that is an option.   The remote option allowed me to work 4 days after surgery...from my wheelchair at home.

CLL is the most difficult and challenging process that most of us will ever experience in our lifetime by miles and miles.   There is nothing like it.  Teeeeeeeeeeeeeeeerust me.

[JsElysianEagle]

@lalbadshah and @IFS - if someone is working 100% remotely, would you say it's feasible to take the first 3 weeks completely off work, and then resume working remotely? Also my hours are quite flexible, I usually have to put in about 3-4 hours a day tops most days.

I'm hoping this work schedule makes it easier to deal with CLL!

[InFullStryde]

@lalbadshah and @IFS - if someone is working 100% remotely, would you say it's feasible to take the first 3 weeks completely off work, and then resume working remotely? Also my hours are quite flexible, I usually have to put in about 3-4 hours a day tops most days.

I'm hoping this work schedule makes it easier to deal with CLL!

Hi JsElysianEagle,

That would be an even more ideal schedule. The hardest weeks for CLL are week 1 - 3.  If you are able to focus on CLL for the first 3 weeks and then work remotely after that; then you are providing for yourself, the opportunity to have a much more comfortable CLL experience.

In my case, I started to work at my computer desk with my wheelchair on the first Monday after my Surgery.  I would take frequent breaks of course and my team knew I was during some kind of surgery/procedure ( I did not disclose the CLL specifics).   Working remotely, helped me pass time even only a few days post-surgery.

With that said; IF you are able to take the first 3 weeks off work and then focus on remote work after; you're really doing your mind and body a favor.  I could not imagine working at my office for 1-month post CLL... I felt very much like a patient of CLL, up until the end of my lengthening.  The first Monday, post lengthening, I returned to work with Crutches for the first 2 weeks, then cane during the 3rd week.  Around the 2nd-month post lengthening, I shed the cane but still brought it along for long walks.   I would argue that my recovery in terms of assisted devices took a bit longer than some on here, but I always opted for safety and comfort through the CLL situation vs getting back to walking right away.

Let me know if you have any further questions!

[JsElysianEagle]

Thanks IFS, as always you're a BIG help! I hope you stick around here as I'm goin to be undergoing this very soon myself with Dr M

[Lalbadshah]

@lalbadshah and @IFS - if someone is working 100% remotely, would you say it's feasible to take the first 3 weeks completely off work, and then resume working remotely? Also my hours are quite flexible, I usually have to put in about 3-4 hours a day tops most days.

I'm hoping this work schedule makes it easier to deal with CLL!

working remotely, flexible hours and putting in 3-4 hours a day - YES definitely possible.

[Lalbadshah]

I agree 100% wit tho who say that the worst actually (in a way, not in every sense) comes after you have gained 3 cms or so. It is true that you are able to walk (though funny) and walk long with cane and walker but your thighs are probably the tightest now and the muscles probably at the worst shape, you start to get new kind of pains etc. for me things were smooth until 4 days back when I started having this weird pain in certain muscles that only comes when I am trying to get down from bed, chair or car and in some other similar situations, it was initially confined in like two areas of 1 inch size muscles on left femur's side skin but today I got same thing in (addition) on the muscle on my right side of my right leg's kneecap as well, I not being a native speaker of English do not know how best to describe a very peculiar kind of pain (Ronnie and my PT asked me to describe ad gave hints for me to describe it but I still struggled to describe, then my PT suggested why not I search the forum and ask around/see if it is something already known, the PT doctor also feels that it is just the result of normal muscle weakness because of stretching) but it is like two-three 1 inch small alien muscle type creatures entered your thigh and whenever you move like get down frm car, bed etc or turn they give you burn and electric current shock for a second and twitch for a second as if they are different then rest of your body/muscles, they act only when I am getting down from car, bed, chair etc./b] , while the level is not 10, it is definitely 7, but bearable because it lasts less than a second (which is the good thing). My next consultation with Dr. D is on 8/29 and I will definitely spend most of the time discussing this with him, I am also wondering whether I should try to pull in the visit. I will also pay visit to my las vegas PT Alex (she was awesome) to say hello to her, to get some stretching from her (man her stretching service is awesome, when she stretches your legs you feel so good, you feel like you are in heaven and an angel is stretching you and she is as sweet looking and kind mannered as an angel) and to get her opinion as well on the muscle burn/electric kind of sensation pain thing (of course I will offer her and her agency adequate consultation fee). Also, in view of this I am thinking of stopping PT for 2-3 days because - i) I have been doing PT from 3 wks non stop, 2 wks in vegas 1 wk here ii) I have a doubt that this pain may be a result of some exercise fatigue (?) iii) will get more time to sleep and heal ( had been doing lot of PT and walking lately) which may help the situation. Any input/thought/advice would be appreciated?

[Lalbadshah]

Friends, at last - after spending hours on research and discussion at last apparently (it seems) I have been able to figure out about what is going on about the burning/shock kind pains in specific muscles. It seems what my PT doctor (not PT instructor but the doctor who runs PT facility) had predicted is true and it is just cramps , resulting from weakened (stretched and overused) muscles, since I have been lengthening 1mm a day, doing almost 1.5 hr PT a day and walking some amount each day the total strain might have been too much for some muscles. Anyway from my research it seems this is something all LL'ers go through and I hope/it seems it passes with time in most cases (and does not become serious issue it seems), as of now in my case it is shifting rapidly from one area to another, it started 3 days back on left thigh, now it is almost gone from there (earlier it was happening 15 times a day there, now only 1-2 times today) and is now on the left side muscles of right leg's knee cap (started with 1-2 times a day to now happening 15-16 times a day, almost whenever I try to make moves like getting down, up from car, bed, chair etc). I look forward to 8/29 to get confirmation on this from dr. D during my next consultation and really hope that my finding is true and it is just a normal/no big issue. Keeping fingers crossed. Feel free to chime in/comment, any insight is appreciated.

[JsElysianEagle]

lalbadshah - thanks for the continued updates! i am sure even if people don't immediately respond many are reading and digesting the valuable information you're sharing as you make your way to your goal.

hang in there - i'm sure you will pull through the pain and be past this very soon!

[Lalbadshah]

Thanks elysian eagle, (I) hope so.

The muscle cramp issue on right leg knee cap is becoming the biggest challenge that I have faced so far in my 7 week's journey. I just woke up with immense pain and soreness on the right kneecap. It was so severe pain, that when I woke up I was pretty sure there will be blood all around and I may call 911 or check into emergency, but guess what? there was nothing, not even a swollen knee cap. no discoloration, redness or anything odd at all!! Visibly it is as good as it has always looked but inside there is pain (though normally only like 3.5/4 level if you are not doing any activity, at times even lower like 1.5/2) but when you do any activity that make the muscles move the pain reaches 9/10 (for anything that requires movement of muscles around kneecap, like getting down from bed, putting on shoes, getting down from car, moving leg in some ways that require those muscles to move), the feeling is like those muscles are tearing/breaking apart and dripping blood (I literally feel like blood drops falling inside !!) but from outside you see nothing at all,  looks perfectly normal!!!, god knows what is going on inside actually and why in this specific 2 inch radius  muscles/area (on left side of right knee cap). I still think it is a cramp that all LLers experience but surprisingly it seems not more tan 2 people (besides me) have written about it, maybe for them other issues had become bigger concerns and for me this is biggest one (now at least). I have bought a pain relieving gel patch pack today in case the pain just becomes too unbearable, though my intention is to fight it out for now and wait for my appointment with Dr. D on 8/29, though I will text Ronnie asking him to text the doctor for a quick check/opinion beforehand (by text) if possible. Note: everything else is going fine, PT, eating, walking and btw the kneecap pain does not appear when I am walking maybe because at that time the problematic muscles are not involved(per my PT doctor 's opinion -that is the case).

[Lalbadshah]

one note; I just realized tat in an earlier post by mistake I wrote the problem muscles/veins as right side of right knee cap but let me correct it - the problematic muscles are actually the left side of right knee cap. right side muscles of that kneecap are acting fine without any problem.

[Lalbadshah]

update: Ronnie being as quick and helpful as he is , as soon as I texted him my concern on the high pain cramp on right knee cap, he relayed my message to doctor D and dr D recommended that I reduce lengthening to 1 session (.33 mm) a day until I see him on 8/29. I know some other patients (with diaries here) have benefited from reduced lengthening when they faced huge adversities, so I hope in my case also it will be helpful, keeping fingers crossed.

I have decided not to reduce PT or walking , initially I thought maybe I should but I decided not to, lets see how reduced lengthening affects, if still problem persists I may reduce PT and walking for a couple of days to see the effect. I had increased my sleep to almost 10 hours yesterday (from usual 6) but it did not really help the situation much.

I am at almost 33mm and this is the first time in my journey that I am really being tested by very high pain (which interestingly/unfortunately is nerve pain and that also on kneecap and only occurring in a 2 inch area for only a few seconds a day during only a few/certain type of leg movements, but the sheer brutality/severity of it is what is intolerable, making me cry). Thing were so much smoother until now, feeling so bad and sad....if this thing goes away I may actually stop at 51 mm (2 inch) though my original plan was to do 60 or if possible 65. because I want my journey to be smooth and easy without too many nerve wrecking or brutal experiences/memories (and anyway I will do tibia as well after 1.5 years, ideally 50mm or at least 45mm if things go rough), god please give me at least 18 more good days to gain 18 mm more, plz....

[Ghostfish]

Hi Lalbadshah

I am quite certain that reducing lengthening will help you reduce the pain.  Pretty much all kind of the pains LLers may experience come from the lengthening of muscles and nerves.  Reducing or even stopping lengthening until you feel better is the best way to save you from the pain.  I also experienced some pains or unbearable tightness during lengthening so I reduced lengthening until I felt better and then resumed the lengthening until my goal was achieved.

I also think you may not have enough stretches in your knees.  Although you are lengthening femurs, all muscles and nerves are connected to the lower part of legs through knees.  Walking or hamstring stretches can't efficiently stretch muscles nearby knees. Sit the edge of bed and kick and bend your knees as much as you can.  Lie on your stomach on the bed and bend your knees as much as you can.  If someone can push your knees to bend, that would be more effective.

You will be fine.  So don't worry too much now.  Just reduce the lengthening until you feel better (don't feel too bad about reducing the lengthening rate.  As long as you get what you want, that is all that matters.).  Stretch more on your knees. 

ps: I also think it is better to stretch more often at the relatively tolerable intensity rather than a few times with a high intensity.
 

[Lalbadshah]

Hi Lalbadshah

I am quite certain that reducing lengthening will help you reduce the pain.  Pretty much all kind of the pains LLers may experience come from the lengthening of muscles and nerves.  Reducing or even stopping lengthening until you feel better is the best way to save you from the pain.  I also experienced some pains or unbearable tightness during lengthening so I reduced lengthening until I felt better and then resumed the lengthening until my goal was achieved.

I also think you may not have enough stretches in your knees.  Although you are lengthening femurs, all muscles and nerves are connected to the lower part of legs through knees.  Walking or hamstring stretches can't efficiently stretch muscles nearby knees. Sit the edge of bed and kick and bend your knees as much as you can.  Lie on your stomach on the bed and bend your knees as much as you can.  If someone can push your knees to bend, that would be more effective.

You will be fine.  So don't worry too much now.  Just reduce the lengthening until you feel better (don't feel too bad about reducing the lengthening rate.  As long as you get what you want, that is all that matters.).  Stretch more on your knees. 

ps: I also think it is better to stretch more often at the relatively tolerable intensity rather than a few times with a high intensity.

Thanks ghostfish for your kind help you are a good person, what you wrote made me think and ( being a person with high IQ) I could connect the dots , what u say makes sense - after coming back from las vegas, I have stopped stretching knees, my current PT (I am his first ever ll case) has been more focused on making my tibia/lower part stronger so that no matter how weak (due to stretching) femur  becomes I can walk, but he neglected the lower part stretching , I tried to do it at home one day (because my Las Vegas PT had told me to do so) but failed because with the band (i bought from Amazon) I could not properly get hold of my feet wit it ( and am alone so could not find anybody to help). now, today i have already started doing what you recommended and I will also straightway tell my PT to help me do the knee stretching , in the past I had mildly asked why he is not doing it and he said the PT doctor (head of the PT center) wants to focus on building knee strength first, but today I have decided this time it will not be a request from me, today it will be an order (to stretch knees). Also, though my post-op visit is on 8/29 with dr. D, I have extended my visit to las vegas to 6 days just to get 6 days of PT from my awesome PT who was giving me PT there. Thanks for thinking about a fellow LLer's problems and offering help.

[Ghostfish]

Sounds great!  I can see you become more positive already!  That is very important.  During LL journey, most of ppl will go through some depression, regret,
 unbearable pain, or other difficulties.  Staying positive is very important.  You will feel much better after reducing lengthening and stretching more including knees.  It will take only several days.
Stay strong!

[Lalbadshah]

Thanks Ghostfish, I sent you a pm can you check?

[Lalbadshah]

Update: my PT doctor does not agree that the exercises suggested by ghostfish (btw these same exercises were also part of my previous last vegas PT's recommended exercises) here will help, he says that will make it worse, his opinion is I just have to survive this until it goes away on its own and he thinks stretching is actually counterproductive in initial stages of LL, in his opinion it (stretching) comes into play after you stop lengthening (and he gave some real solid logical explanation). So, now I am in BIG dilemma.

I have worked with 2 PTs and I cannot say any PT is bad because to speak the truth I have been and am doing fine under both PTs. one PT was was heavy on stretching (though also involved some strength building exercises) and my current PT is heavy on strength building on both upper body and knees (though also involves some stretching like touching the nose to table by bending etc.). The only point where both agree is - walking is good which I am doing a lot. what I want to see if which approach makes my LL journey easier. My immediate priority is to find some way  to recover from this hellish pain, it is only momentary , comes for a few seconds every time I make certain moves that involve right knee cap movement, it is so severe and brutal that I, who sometimes stays without pain medication for 20 hours (yes I did it and still could take the pain), never cried during last 35 days, have been crying when this pain hits me. I have already slowed down to 1 lengthening, no improvement yet, lets see if anything hppens in next 2-3 days. My current PT says it will go on its own with reduced lengthening no stretching needed and Ghostfish says stretching has something to do with it. so, good thing is starting from 8/28 to 2/9 I will be in vegas and will work with my earlier PT. Her PT was heavy on stretching - so I will be able to see how the vegas PT approach on my case. Last but not least - I would like to see what input dr D gives (besides reducing clicking). I am ok to survive the hell for 5-6 more days (has been 3-4 days already), but I do not buy the theory that it will eventually go away (eventually = 1 month, 1 year, 1000 years? when), so after 5-6 days from now if the pain does not go away or at least give sign of reducing - I will go to hospital emergency room and admit myself and cry and yell asking them to fix me , because I believe there is cure for everything.

[Renaissance]

Hello.
I was wondering if  you practice bodybuilding before undergoingg this operation. I heard that practice bodybuilding and including leg strength regularly before the operation was a good way to get through the pain during ll.

And did you consider the possibility using this kind of electrostimulation device to deeply relax your muscles.
Or avoid it because you have an electromagnetic device in your legs.
Thanks and stay strong. All the best for your journey.

[Renaissance]

https://www.google.com/search?q=compex&client=ms-android-wiko-rev2&prmd=sivn&source=lnms&tbm=isch&sa=X&ved=2ahUKEwi95IT946LkAhUDQxUIHYn5C0kQ_AUoAnoECA8QAg&biw=360&bih=592#imgrc=cy0gv4p5lE5MpM

[Ghostfish]

Update: my PT doctor does not agree that the exercises suggested by ghostfish (btw these same exercises were also part of my previous last vegas PT's recommended exercises) here will help, he says that will make it worse, his opinion is I just have to survive this until it goes away on its own and he thinks stretching is actually counterproductive in initial stages of LL, in his opinion it (stretching) comes into play after you stop lengthening (and he gave some real solid logical explanation). So, now I am in BIG dilemma.

I have worked with 2 PTs and I cannot say any PT is bad because to speak the truth I have been and am doing fine under both PTs. one PT was was heavy on stretching (though also involved some strength building exercises) and my current PT is heavy on strength building on both upper body and knees (though also involves some stretching like touching the nose to table by bending etc.). The only point where both agree is - walking is good which I am doing a lot. what I want to see if which approach makes my LL journey easier. My immediate priority is to find some way  to recover from this hellish pain, it is only momentary , comes for a few seconds every time I make certain moves that involve right knee cap movement, it is so severe and brutal that I, who sometimes stays without pain medication for 20 hours (yes I did it and still could take the pain), never cried during last 35 days, have been crying when this pain hits me. I have already slowed down to 1 lengthening, no improvement yet, lets see if anything hppens in next 2-3 days. My current PT says it will go on its own with reduced lengthening no stretching needed and Ghostfish says stretching has something to do with it. so, good thing is starting from 8/28 to 2/9 I will be in vegas and will work with my earlier PT. Her PT was heavy on stretching - so I will be able to see how the vegas PT approach on my case. Last but not least - I would like to see what input dr D gives (besides reducing clicking). I am ok to survive the hell for 5-6 more days (has been 3-4 days already), but I do not buy the theory that it will eventually go away (eventually = 1 month, 1 year, 1000 years? when), so after 5-6 days from now if the pain does not go away or at least give sign of reducing - I will go to hospital emergency room and admit myself and cry and yell asking them to fix me , because I believe there is cure for everything.

Hi Lalbadshah

I read your pm.  I think your current PT is wrong at least to some extent, since he has had experienced LL patients before you.  Focusing on building muscles or strength on the upper body is completely irrelevant to CLL, unless you really want to build your upper body muscle, which you can do it later anyway.   Building strength on your knees or legs could be helpful down the road.  I am quite certain your pain comes from the tightness of nerve or muscle.  Reducing the lengthening is the best to relax this tightness and the stretch is the second best way to loosen tightness.  But do not overdo stretching especially when you have pain.  Anyway, it is a dilemma for you due to different opinions between the two PTs.  But you need to know the PT in Las Vegas knows what is CLL and has worked for many LL patients.

No matter what, stay strong and positive.  You will be fine.  Your pain will be better as time goes by, as long as your problem arises from the tightness.

Good luck!

[Lalbadshah]

update: i followed my instinct and did the stretching (the knee stretching recommended by ghostfish and that my old PT used to make me do) and also reduced lengthening to once a day and my situation is getting better, 10/10 pain came only 2 times (unlike 14-15 times on other days) today , but other times I am feeling like a 3.5/10 constant pain on knee cap (which was earlier not there), still this situation is better than earlier, so I will keep stretching and doing only one lengthening - for nxt 4-5 days, and I hope by then it is sorted/resolved.

[Lalbadshah]

Update: in Las Vegas now, interestingly my las vegas PT also agrees with my San Jose PT and she also believes (unlike Ghostfish's opinion) that stretching has got noting to do with this knee cap pain issue (and at this point nobody has any explanation on reason of this pain). Though just like ghostfish's opinion she also feels I need to focus more on stretching for my tightness etc issues and we started new exercises for stretching to reduce thigh tightness and my penguin/duck kind of walk. I am and will wok on stretching but that is not what is stopping me from progressing further, it is the knee cap pain issue, anyway good news is it seems I am not the only one who experienced this issue, there are/were 3 current/past patients she has seen who had/are having experienced it and it seems in most (or maybe all) the right leg is the one giving the trouble (similar to my case), from what I understand they are also under reduced lengthening now and experiencing improvements. Anyway, the reduced clicking seems to be the only opinion all have and it seems to be working as of now, today I had no 10/10 pain at all, though there were many 5/10 burning sensation pains on right knee cap and muscles around especially during the the 1 hour plane journey , but things are improving for sure - my only worry is I hope it does not take too long to get resolved because I would like to go back to normal business (1mm a day) in next 4-5 days at least. Tomorrow I see Dr. D , lets see if he recommends anything else besides waiting out (with reduced lengthening) until this is completely gone. that aside, I started some new kind of PTs with the las vegas PT today, very interesting ones . Btw, I think in next 2 weeks I will be able to walk up stairs, the way my strength is building up (walking down I already can). Note: firs time in my LL journey i used heat therapy (recommended by PT) today and it worked very well, so advice for all - heat therapy/pad may work in pain situations, try it.

[cena]

This is a pretty brave experience. Doing LL by yourself and going to work in 3 weeks. It will be amazing to pull this off.

[Lalbadshah]

Update: had my post op consult today with dr. D and staff. We all agreed that for the knee cap nerve pain I will keep doing one lengthening a day for 3-4 more days and hope issue get resolved completely. If issue gets resolved completely then I will g back to 1 mm  a day else if some issue still remains then I will do 2 sessions (.66 mm) a day. One session a day is not a long term solution because - i) consolidation will happen before reaching target height and ii) I dont want to drag LL things too long in my life , want to move on asap.
Good thing is that by ERC machine I am already 33 mm taller, by Ronnie's assessment based on X-ray around 40mm, so I will say my guess is I should be 35mm taller at least already, so - my plan is - i) if I go back to 1 MM then I will keep pushing for my target 65mm or at least 60mm but ii) if I reduce to 2 sessions (.66mm) I may actually shoot for only 15 mm more (total 2 inches), because before I started my jorney I new I wanted ideally 6.5 cm but will be content with 5.1 cm (2 inch) if things go tough. And anyway my aim was never to go huge on one segment but to do like 2.5 inches on femur and 2 inch on tibia. So. as long as I reach near to that I am ok, I want a few inches but nit make LL a BIG part/journey of my life. like 2 small phases (in life) of a few months each giving me like 2 inches, that is what I want.

yes Cena, it is difficult to do it alone, not impossible , but yes i agree it would be a new feat somebody doing it without any friend/family member/girlfriend support involved at all.

[cena]

Great diary Lalbadshah.

I have some questions can you answer what you are comfortable with?

1 How do you sit and get up from the toilet? Do you use a walker for support?
2 How have colleagues and managers reacted to your disability?
3 How do you get around in airport for walking long distances? Do you opt for wheelchair?
4 How do you carry backpack along with crutches or walker while walking to office from uber? you had asked this question but you did not tell how you resolved it.
5 what is the hardest thing you find to do on daily basis because of LL?

thank you

[Lalbadshah]

Great diary Lalbadshah.

I have some questions can you answer what you are comfortable with?

1 How do you sit and get up from the toilet? Do you use a walker for support?
2 How have colleagues and managers reacted to your disability?
3 How do you get around in airport for walking long distances? Do you opt for wheelchair?
4 How do you carry backpack along with crutches or walker while walking to office from uber? you had asked this question but you did not tell how you resolved it.
5 what is the hardest thing you find to do on daily basis because of LL?

thank you

1. initially walker was must to get down up but now i am strong enough to do so without walker so I have been doing it without walker or cane, BUT - it was a mistake, I have started using cane while sitting down up toilet again because once or twice I got too confident that I did it (sitting down/up on commode) so fast/rapidly that the jerk ended up giving pain to my hip so I use cane and do it nice and easy.

2. I have told only 2 ppl (they have sworn to keep it a secret) abt  it in office(it was a mistake because one guy reacted very negatively like why did you do so to ur leg etc. etc. oter guy was ok, he is cool abt it), others think i have hurt my leg somehow (and I never corrected their guess, neither affirmed I just give vague answer like yeah it is complicated, and nobody asks anything more).

3. for long distance like huge airports, yes i use wheelchair.

4. i keep backpack light. i use cane now, not crutches but even with walker or crutches u can carry backpack, as long as it is not very heavy and as long as ur back is strong enough - mine is.

5. everything is hard but hardest things are - i) the brutal pain i am getting on my right knee cap nerve, that comes at few/some times not always but when it comes it makes me cry/yell, and there is nothing we can do about it, there is no medicine for this nerve pain so u just keep suffering ii) sitting - for me this is the most difficult part of daily life, as soon as yo seat your ass/hip is in pain - the harder the surface the more the pain, the longer u sit the more it gets, in fact on a commode if you seat for like 30 minutes you will literally start crying in pain, even sitting on comfy chair for 30 minutes straight is difficult iii) decreased productivity - ur productivity at work will suffer so u become like weak member of team (in these cases your past achievements can save you, it is like if messi plays bad for 20 games he will still not be fired), so do LL only after u have established reputation for urself, if you re new member and start LL ur low productivity will make u prime target for layoff. for me actually, it seems my manger thought i am slacking bcoz i am looking (for other jobs so he ended up giving me higher bonus, lol but again this is bcoz of what I have done in last 5.5 years iv)carrying on the journey - when u think back hoe easy life was and what u have made of it, it is very easy to want to end it sooner, you may get thoughts to stop early, for example i wanted 2.5 inches but i am pretty sure i will stop at 2 now because I want to get back to normal life sooner even if that means stopping earlier than what u aimed for. These have been my biggest challenges.

[verticalpush]

Hang in there, Lalbadshah! I also had to reduce lengthening during my journey due to pain. Moving down to 2 sessions a day was something I initially resisted - for the same reasons as yourself. I didn't want to drag the process on longer than it had to be. But, it solved all of my pain issues. It took maybe a week for me to start noticing the reduced pain, and it seems from your diary you're starting to notice improvement.

You'll make it. In the grand scheme of things, an extra few weeks of lengthening makes no difference. Suffering the pain you described every day just isn't worth it to save a little bit of time.

[Lalbadshah]

Hang in there, Lalbadshah! I also had to reduce lengthening during my journey due to pain. Moving down to 2 sessions a day was something I initially resisted - for the same reasons as yourself. I didn't want to drag the process on longer than it had to be. But, it solved all of my pain issues. It took maybe a week for me to start noticing the reduced pain, and it seems from your diary you're starting to notice improvement.

You'll make it. In the grand scheme of things, an extra few weeks of lengthening makes no difference. Suffering the pain you described every day just isn't worth it to save a little bit of time.

You are right, I had reduced to 1 click a day for 4 days and now after noticing some improvement I am trying 2 clicks a day (otherwise it will be too mate for me to accomplish my goal), I plan to continue 2 click for another weeks or 10 days and then try to go to 1mm a day, if needed I am even ok doing rest if my journey with 2 sessions a day. The truth is some kind of pain or issue is part and parcel of the journey and nobody is going to have a perfectly smooth ride from beginning to end. I will call you sometime man, it has been sometime we talked on phone, lets talk again sometime.