Time to try and climb back on that wagon

[kebsa]

Oh how easy it is to fall back into bad habits when things get a bit tough, even with our wonderful bands- if anyone ever even hints to me that having a band makes losing weight effortless i think i will just swat them from here to next week! now i have vented that little bit of frustrantion its time to own up to my "sins"!

I know i have told you all about my MS and i have posteda few time about having some problems - well since october i have now had multiple relapses (almost one running into the next), I have been admitted to hospital 13 times,i just got out again last Friday, this was a shorter admission, i was in for a week- Basically i have spent more time in hospitial than out since October. When my flares badly they give me super high doses of steroids, like 1000mg a day IV with it comes the carb/sugar cravings and weight gain. I have also found that when i am in hospital, the lack of control over my diet is really tough, a combination of all this and spending weeks in bed has been that i have re gained around 30 pounds since my lowest weight!
Its easy to make excuses and find reasons which is what i have been doing, telling myself i will do better when my MS settles down but i am realising that that kind of logic is likely to see me sooner or later regain every last pound. The truth is that MS is part of my life that i cannot control, i can afford to just sit back and hope things will settle down and that magically i will lose the weight again. THis has shown me that i will always have to becareful not to fall into bad habits and excuses again- its away too easy, If i was really being successful at retraining my habits (both the physical stuff and the head stuff) I would be able to at least maintain my weightloss in the tough times. Hopefully my Ms will settle down again and will make life easier for me, but it may not, sooner or later most MS 'ers go from relapsing remitting disease to a progressive form when there is no clear gap between attacks, its too early to say if that is what is happening to me at the moment but i now realise that i cannot see the 2 issues as seperate entities- if i do, i am guaranteed to fail at losing all my weight

I remember Niel telling us how he had realised that we never reach the finish line that it will always be just that bit ahead - i heard that, i believed it but now i actually really feel it! Its a really scarey thought! I guess thats aknowledging a true addiction- trust us to pick and addiction where we cannot ever fully avoid the problem substance though!

before October i had managed to get more mobile and started walking with a prosthesis after yrs of being totally wheelchair dependant, i lost function in my remaining leg with this round of relapses, so i have not walked for months now- hopefully i will be able to get back to the same level again- i started out patient rehab today so that is a start.

another concern has been how out of control and super anxious i feel when the MS is at its worse! I have always been reasonably confident but this wonderful disease has me in a real tail spin and it is so easy to turn to comfort eating like old times

I don't want to focus on weight loss and i certainy don't want to focus on the MS,but i guess i am realising that for me, part of my headwork is to learn how to incorporate both issues into my life so that attention to them is automatic rather than waiting to see which issue is screaming for attention the loudest.
e
next task is too update my signature to reflect my weight regain-for some reason that is tough- i feel like i have wasted a lot of really productive, hard work-thats tough to admit.

[WildAlaskaG'ma]

Wow Karen ,,, yet again you have been through the mill and come out committed to giving it another go. You definitely are a strong woman. Life is HARD when we focus on what we should have or could have done because those are shaming words. Now seems the time to let go of the shame and get on with getting on. We all know you can do it. You've proven yourself over and over again. I can't even imagine dealing with the challenges you face every day ,,, so you are most definitely my hero ,,, even if you never lose another pound!!! But I know you won't settle for that. You are a scrapper and a fighter, so go ahead and fix up that ticker so we can all celebrate its soon to be downward movement with you.

Hugs & prayers ,,,

Judy

[JDru]

Karen I'm glad to see you're back to posting. I've been wondering how you're doing and I've missed you! It sounds like you've had a rough run these past few months but I have no doubt that you will be able to get back on the wagon. You have such determination and incredible strenght...I know you can do it!! :)

[spiketvl]

[quote=kebsa;121407]

The truth is that MS is part of my life that i cannot control, i can afford to just sit back and hope things will settle down and that magically i will lose the weight again. THis has shown me that i will always have to becareful not to fall into bad habits and excuses again- its away too easy, If i was really being successful at retraining my habits (both the physical stuff and the head stuff) I would be able to at least maintain my weightloss in the tough times.
[quote]


Wow you are a strong woman. I love what you said here, it really hit home for me. I have an injury that really dominates in my life and am going through a setback with it at the moment and have tended to just curl up in a ball and eat chocolate and not exercise cause it just hurts so much. So I do totally understand where you are coming from. I just made an appointment with a hypnotherapist to get some help with the pain management issues - I am not sure if that would help with you too? Sometimes I think anything is worth a try.

But once again your spirit amazes me - you are one very cool woman.

[Patrick]

Karenb your strength and resolve come shining throught your message. The challenges you face are daunting, however, you are doing a great job by focusing on using you band rather than excuses. Yes, the bands main strength is a head game and it is great to see you recognize that. You are not a quitter, that is for sure. You are an inspiration to the rest of us. Please keep posting so we can be here for you and support you.

[ginabobina]

Karen kudos on reaching out, being honest and not giving up. I totally feel where you're coming from. I've had a rough couple of weeks and it has been scary how out of control it has felt. I am shocked at how much my old behaviors returned and the extent to which I gave in - it has really opened my eyes to how important it is for me to ask for help and to be painfully honest with myself and others about how I'm doing. I have been feeling so down and turned to food to soothe myself - especially when my physical pain is flaring up. I find myself wanting to just lay down and give up for a while... then that turns into a few days and then a week... "soothing" myself with sugar which only makes me feel worse because I'm not getting in the nutrition I need and feeding sugar cravings only makes the cravings worse. It's hard to get out of the cycle but I applaud you for getting back on the wagon and re-committing yourself! It's ture that some things are just a part of our life and we can't wait until this or that is resolved to change our habits - life is going to keep on happening every day and we have to re-learn how to cope with whatever life brings without using food in unhealthy ways - wish it was easier done than said!! Best wishes to you Karen - you can do this!!

[kebsa]

Thanks guys, I feel a bit better about things this morning, I am pleased to find that i feel pretty good after my half day at rehab yesterday-its a fine line sometimes with the physical activity beteween feeling good and pushing things ti the point that i feel crook afterwards nad it seems i did not push things too hard this time- iwas exhausted last night but feel ok now

as for being a strong person, thankyou al very mutch, i do not feel strong at times, far from it recently, its just a case of putting one foot in front of the other to get to where i need to be.

I am do glad that you are here to help and encourage me, the other thing that becomes more apparent as time goes on is that although i am the only one who can do the work needed to reach my goals, it is not soething that can be done alone- support and encouragement from others who understand all the headstuff is so important- thanks for being here

[Nick N Ava's Grammy]

Karen, I know at times we all feel helpless, but as you know, posting our thoughts in here gives us a chance to let it all out, and know that people are here that understand because most of us have felt the same helplessness.

I don't know what it's like to live with MS, but I would love to give you as much support as I possibly can. :)


Hugs and prayers coming your way.

[kristina]

Karen- i said a little prayer for you.

[PhotoNut]

Karen, I marvel at your undying determination to keep pressing on toward that elusive finish line. These trials, that would understandably cause most people to lapse into self pity and defeat, seem to challenge you and spark that "I'll not let this beat me!" attitude that we so often see in you. You take away all of my excuses, and inspire me to work harder on myself.

You will, as always, be in my prayers.

Susan

[MoOrLess]

Karen - so good to see you posting again. You have been so missed! HUGS! I would never even begin to compare my health issues to yours - but I certainly can understand where you are coming from. You've come so far - don't let things get you down. You know we are all here for you and that you are in our prayers daily!

Keep on keepin' on girl! And what better place to hop on the band wagon than B2G?!!!

[Greeneyetiger]

Karen,

You are always such a fighter, no matter what life throws at you. You have always been an inspiration to me. I keep falling and getting back up....I don't even count how many times I have fallen and gotten back up. But I know how it feels to struggle with this weight and have health problems thrown in the mix. My health issues are no where near the level you are dealing with and it is hard for me.

Be kind to yourself because what you are dealing with (MS) is a monster and it is a tramendous fight you have. I know you are a strong woman and I believe you can do anything you set your mind to.

My prayers are with you and that the MS eases up and you go into remission for a long time. I feel so bad that you are going through all you are. I am glad to see you back. I think about you more than you will ever know. You were one of the first people to welcome me here on b2g and make me feel positive about my band and this whole process when I first started.

Big Hugs

[kebsa]

thank you all so much once again for all your great support, you will never know just how much it means to me-its trully amazing that thanks to the wonders of modern technology people from half a world away aare able to share such warmth and kindness- what did we do before the internet!

Susan, I'd like to think that i can inspire someone or that at least someone else may see someething of there own situation in what i post and are able to see the chance for positive change because of it, that would be neat! but remembert that it would not be possible if it were not for you and Dawg starting B2G- we really do owe that mob from the "the other place" a great deal in a backhanded kind of way! As for undying determination and alway being positive, i wish that were the case, I do try hard at it and i do better than i used to but i really have to admit to feeling the old negatve thoughts creeping in at times over the past few months since being ill- it is just so easy to fall back into old habits when times get tough.
I guess what i am trying to do is to work on the principle of "like attracts like"- if i think and act in negatve ways, even if it is only small stuff, it will attract more negative actions and thoughts but if i try ro re phrase those negatives in a more positive way it will attract more positive stuff- its a very simplistic way of thinking but it seems to work (i think).

The other thing i have been thinking about and trying to work on is an issue of perception. Since i started my get real weight lose program in '06, I have gradually realised that not much in life is ever really totally negative or positive, its usually somewhere inbetween and we chose (not consciously though) which point of view to see the issue from. In the past i have seen things from the negative point of view more easily, in the short term life is easier that way. Gradually i have been trying to learn to resist that temptation and to take a deep breath as i look again and try to find the more positive aspects of the issue- most of the time i think i do ok but being ill allowed me to fall back into old patterns- the more postive view on this is that it has been a test, a test to see if i really am changing my life time coping skills in a trully permanent fashion rather than the short term diet mode- I found the answer! so now i am going to try to work on make it permanent if not automatic.

The thing that has shaken me so much about my current/recent problems is the degree of anxiety that i have experienced. I have never been one of those super confident kind of folk but i have at least felt in control. Feeling in control of myself and my life is important to me, as a kid i experienced sexual abuse for several years and the helplessness that i felt back then had a huge impact on who i became (including the weight but that is a whole other story). I needed to feel in control, to the point that i would take the easy way out and avoid risks rather than risk that loss of control- it took me ages to realise that was what i was doing. It makes life safe but it is destructive in other ways. I have been trying hard to stretch my limits, to take a few risks etc with the hope that it gives me more of a sense of freedom in life. I really felt like i was getting somewhere too.
I live alone and do most of my own housekeeping etc as well as working part time and studying part time, it has been a bit of a juggling act but i have managed to keep all my balls in the air reasonably well. I had struggled the most with housework, i used to be a bit of a neat freak but have changed as my mobility has decreased. Until now i have a cleaner once a month for 1 1/2 hours to do the floors and the bathroom as well as changing the bed linen, tasks that are just too much of a struggle in a wheelchair. I sometimes had thought that i needed a bit more help, but that would mean a decrease in personal freedom as i conform to the schedules and requirements of the agencies that provide the funding and the carers (i would have to use the government funded disability support services as private carers would be outside my limited budget from the few hours i work)- Back in October when i got sick I had just about reached the decision that i needed to ask for more support (it would take a few months to get approval for funding).
The MS causes severe fatigue, its a degree of fatigue that is hard to explain, things just do not work! It takes all kind of effort just to remain sitting upright, the idea of being able to transfer from bed to wheelchair for a trip to the bathroom and back is just too when things are at their worst- it is when i get like this that the Anxiety gets bad. I feel so out of control and so thoroughly helpless that it almost hurts! I am usually quite ok with the whole idea of living alone but when i get like this, its terrifying! we have emergency care programs to help avoid hospital admission when illness strikes, it will provide a couple of hours care per day for a week - the 2 hours when care is here is Ok but then I am alone again and even the simplst thing is a challenge. I have accepted the fact that between the MS, the amputation and other medical problems, the chances are exceedingly high that i will eventually end up in a nursing home even if it is low level care- it was not a great feeling when i realised that but i accepted it. While i was in hospital for one of the longer stays recntly ( just on 4 weeks) i was so scared about how i would manage at home alone, i started to think how much better it might be if i were a supported care facility!! one of the places where you can be independant but there is staff there as back up if you are having a bad day- It was only fear that made me think like this, i am not really ready for residential care! Last time i got sick, my neurologists secretary rang me to confirm that they had booked me into hospital but that unfortunately the bed would not be available for 24 hours- that was enough to put me into a blind panic, the whole idea of being at home alone for another 24 hours was absolutely terrifying, thankfully the secretary sensed my worry and told my Dr who was able to pull a few strings and get me in that evening but even now i am kind of stunned by how scared/anxious I felt. As for extra help or not, i have spoken to case managers about the idea at the moment but we have not made any definite plans as yet- the case managers will use my progress in the day rehab programs to help assess what my needs may be. From my point of view the 2 issues would be daily meal preparation/cleanup and Laundry. I know there are low cal frozen meals but they do not generally come close to matching the diet guidelines i have using in both nutrition but more importantly, in texture ( swallowing problems) so i have been cooking my own- unfortunately there have been a few too many times recently when i have skipped meals because the effort has been too much and that is not a thing i want to become habit again. Someone to come in every couple of days to help with this would be good - they could help make a couple of days worth of meals at a time that are easy to heat- that would mean there was minimal cleanup that was more possible. The other alternative would be alterations to the kitchen to make it more usable. at present the kitchen benches and stove top are standard height so that when i am working from my wheelchair everything is just above chest height -my arms and back fatigues so quickly! even doing a sink full of washing up becomes a workout ( not to mention the fact i end up getting soaked)- I have asked for an OT to come out to do an in home assessment of the kitchen to see if there are any viable alterations to either the way i work or to the work area rather than applying for a carer.

This has been much longer than i intended, and i am sorry for risking boring you all but its nice to have someone to bounce thoughts off of, plus i know we have a huge variety of people from all kind of backgrounds out there and some of you may have ideas that i could put to use


Thanks again for all you kind thoughts and prayers, it does mean a great deal



I also think the anxiety may be a symptom in its own right to a degree, depression and anxiety are both more common in MS sufferers than the genereal public but i have always thought that is as a reaction to other symtoms- it seems it can be symptom in itself depending on what part od the brain the lesion strike- i have frontal lobe(amongst other) which does include decision making, executuve function etc.

[MoOrLess]

Karen, I for one appreciate the time you take to explain how life is for you. I always learn something new about/from you every single time. I know it is easier said than done - but hang in there. Yes, you are strong - but I know what you are feeling on a limited level - since losing almost 60 lbs my health has improved greatly...that said, when the fibromyalgia or degenerative disk disease strikes with pain it really sets me back even more - because I am used to feeling ok.

HUGS girlfriend -- it sounds like we have gone through some very similar childhood issues and they do indeed take their toll - one way or another we are forced to deal with them.

And I don't blame you one bit for being "anxious" about your living situation. I hate that you don't live in the states -- heck with all of us bandsters we could take turns helping you out in a heartbeat! I hope you are able to work out getting the help you want/need without losing your sense of independence, I think that is the hardest part, especially when the pain is unbearable.

We all love you and miss you when you aren't here -- hold on to that thought and know that we are praying for your health on a daily basis. Knowing what you are dealing with helps us pray specifically too! Keep posting - we always want to know what is happening in your world...HUGS!

[kebsa]

Mo, how true it is that we feel the effects of painful conditions all the more when we have lost weight- that resentment that it impinging on what should be your increased health and fitness. i hadn't thought of it in those terms before but is true. I don't have Fibro but my original health problem that led to the amputation was a condition called Complex Regional Pain syndrome -Chronic pain is the pits

Thank you for understanding my feer about loss of independance- some people seem to struggle with the idea-I have had comments about some who say how nice it would be to have someone to do the housework! No concept of what may have been lsot to achieve this!

[MoOrLess]

Karen - can you tell that on some level I have been there/done that/doing that too?! Sometimes it takes one to know one - and in this case I definitely know what you are going through.

[kebsa]

Thank you for the support Mo, It is good to have people around who do understand, I am only sorry that its because of your own personal experience! I know that you have mention Fibromyalgia and thats a condition that is so poorly understood by the average person- its yet another one of those invisible disabilities. In my case people see the amputation but the MS can't be seen - The fatigue is so profound at times that sitting upright is just about impossible but most people can't comprehend that becaue they can't see it. even thinking straight and decision making gets tough. Its these kind of effects that actually make me quite anxious about living alone sometimes. I'm in my forties now and i struggle at times, How will i cope as i get older let alone as the Ms progresses. I know that my extra weight is a huge threat to my independance, it was that fear after an attack that led to me really getting serious about weight loss a bit over 12 months ago. I want to get to below 200 pounds, that should make day to day physical challenges a bit easier but it is a pity that it takes fear of dependance to make me suceed to any degree with weight loss.

how do you deal with the fear of losing your independance?

[Dustbunny]

Karen:
It's nice to have you out of hospital, i really miss your thoughtful posts. You are a strong woman. i admire you. DB

[kebsa]

Thanks DB, The trouble is i manage to get out of hospital Ok its just staying out that is proving to be tough at the moment! Seriously though, I am gradually feeling better, the last couple of hospital stays have been shorter and the gap between them has been getting longer. I am not sure if i will get back to where i was physically before all this started, it will take a while to see how much permanent neurological damage has been done. I was worried that I had converted to secondary progressive MS at one stage but my Neurologist does not think so at the moment, he has said that i am now classed as highly active relapsing remitting MS but that is still better than progressive. It means i still qualify for the disease modifying medications, interferon shots i give myself every second day, they are supposed to slow down the progression of the disease but once you convert to seconday progressive disease you no longer qualify, its purely symtomatic treatment at the moment for that group.

as for being strong, what strength i do have is because of the wonderful support i get from people like you guys! i have no family to speak of to help me with this- you guys are my extended support system- i would really struggle without you all I think!

[kebsa]

Well today was another tough day, i wole this morning feelomg dizzy anxious and o so very fatgued! my joints hurt too but it s the anxiety and fatigue that got me the most! Obviously the MS ia arill active and still not too fae deom the surface- spent most of the half alseep and i feel a bit better now. I really whish this would go back into remission for a while, i am getting so tired of all this disruption! i had so many plans for todya and did nor achieve any of it. When these feelings tart these days i worry about whether this is going to be another trip to hospitl, as i am feeling a bit better now, i think i will be ok this time. I certainlu did not have enough energy to cook meals etc tofay and I did not feel much like eating so i stuck to optifast - the minimal effort diet

[Dustbunny]

Karen thanks for telling a bit about the MS medications. I didn't know there was much to be done, or different diagnosis to be madw. I have known people with MS that never seemed very affected and some that progressed rapidly. i didn't know the reason for the difference.

What sort of hobbies do you have? Is there some craft like knitting that you enjoy?
I used to knit and do cross stitch, but am usually on the computer now for fun.
Sending a hug and wish for a good day to you. DB

[kebsa]

I used to knit and i did get some wool and a pattern recently but i find my hands go into spasm quite quickly so i can't fo it for long - i will talk to my neurologist because the hand spasm are getting to be a darn nusance! they did talk about botox to reduce them at one stage and i know there are other meds to try.

I have done lots of cross stitch in the past, at one time i used to start a new one every time i went into hospital- i have a trunk full rolled up! I still have all the threads so i might start doing it again- i stopped because it became a way of remembering all the health problems- this was back when i was going through all the surgery on my foot- it eventually ended with amputation, i lost my house and nearly went bankrupt- not a good time! but that was ages ago and i have been thinking of digging out the silks!

I have also done leadlighting in the past, I need to set up a workship before i dig that stuff out again, i didi mainy copperfoil work which is used for things like lampshades and mirror surrounds- i loved doing it, something about cutting glass that i found really relaxing after a tough day- took all those frustrations away!

I also love working on photos in photoshop, renovating old shots and all kinds of stuff, i have not really had much time recently though- i am saving for the new version of photoshop- as i am enrolled at college i can get it for an academic price which is around$490 instead close to #2000!

I spend ages at the computer for one reasong or another, i am thinking of getting a wireless modem for my laptop so i can be trully mobile- if i go in hospital i can take my laptop withme too! access has gotten a lot cheaper now so it is a viable option


I feel better today than i did yesterday so i think it will be a good day. as for types of MS, there are 4 types altogher
benign MS- the person has one attack but does not seem to have another for many years.
Relapsing remitting MS, themost common type, where you have attacks with very active symptoms followed by periods of what seems like normal, you many or maynot have residual effects- i do. eventually most with this type will go on to develop the third kind
secondary progressive- there are no longer relapses and remissions, just a steady accumulation of new symptoms0 it can be rapid or very gradual. the betaferons are thought to be helpful by the neurologists but most insurance companies and our pharmacetical funding scheme will not fund it at the moment- the meds cost $1100 per month without it!

Primary progressive- steady accumulation of deficits from the word go! the most aggressive form, more common in men than in women

at the moment most meds are aimed at symptom control only, betaferon and copaxone are 2 of 5 drugs that are hoped to reduce the number of attacks and the severity of attacks. There is also a new dug called Tysabri that is given as a monthly IV infusion, its like chemo. some people swear by it, it isonly used in the more aggressive.severe cases as it is potentially dangerous- there hve been 3 deaths associated due to progressive leukodystrophy.

When we have attacks, they treat it with very high dose steroids, as in a 1000mg of methyprednisolone per day IV for 5 days- it is hoped to end the relapse a bit quicker and to help the symptos ease of a bit quicker

there is also dietry stuff to help, the swank diet is one. no red meat, very limited fat intake except for Omega 6, no dairy products= it is aimed at reducing the background inflammatory process

the rest is symptom controll and some work better than others, my biggest problem tends to be severe fatigue adn there is not much to help that

[PhotoNut]

i am thinking of getting a wireless modem for my laptop so i can be trully mobile- if i go in hospital i can take my laptop withme too!

Yes! Then we won't have to be away from you and wonder where and how you are! I like this plan! Yes indeed, I like it a lot! :rockon:

[kebsa]

OK, i am getting warmer and warmer on the idea of wireless access, i will just have to do a bit of research on the best deals around at the moment.

Well, today was another day at rehab- I managed to walk a total of 120meters using 2 canes! that was with a brief sit down and rest every 20M and i really worked a sweat though- the Physio had set me a goal of 60m, so i slammed that!

I also did a pretty good workout for the arms and upper body and then i did an hours worth of excercise in the pool too. 3/4 of it was balance work, leg work and core muscles and the last 1/4 hour was using a kick board to do Laps, i should say lap becuase it takes a heck of a lot of kicking with one foot to move in water! One day if i win the lotto i will invest in a swim leg (prosthesis) so that i can be two legged in the water too.

Usually the outpatients rehab program is 2 half days per week but the physiotherapist knows that i am trying to get fit and lose weight as well as recovering from the MS attacks and as she said that as i am putting a serious amount of effort in, she is happy for me to go 3 time per week! thats great! I have been trying to find a gym or fitness centre that as well as being accessible in terms if disabilities, has the experties to provide support/supervision- so this is great, and it is not costing anything as it is though our public health system. It seems that when my rehab program is complete i may still be able to access the facilites 2 days a week for a small cost as they have a long term program for amputees! I am really excited about this because with the amount i weight i need to lose in total, I have always known that diet alone will not get me to the goal weight- i need an excercise program too. Even now, the amount of weight i have already lost has not been as effective at reducing in size as should have been because i have not been able to do the work to tone up, i have been able to do some upper body work and some work with my leg but not the core muscles, eg abdomen etc, Finally i can trully do a full body workout. I have actually set a goal for rehab, not sure if it is achievable but i am sure going to give it a go- it is to be able to drive myslef to the rehab centre, park outside, and instead of using my wheelchair, use my walker ( it has a seat on it) to walk into the centre, that means walking about 150 to175 metres each way as well as doing the program in the gym! If i can do that it means that my walking is a useful amount in terms of community access- at the moment the walking i do is not practical for day to day access simply because of the degree of effort that it takes, I will always be heavily reliant on my wheelchair but there are still many places that are not wheelchiar friendly so it has been a very long standing dream, to be mobile enough to not always need my wheelchair for things like going to friends homes or resteraunts etc. my remaining leg is actually weaker than my amputated side thanks to the MS and some days it just will not do what i want or need it to do but even if it is only occasionally, it would be great.
This may sound strange but along with the usual wish list of plastic surgery that many of us bandster have,i have the possibility of a stump revision on mine. At the moment i have a really odd looking prosthesis as i have a knee joint but no shin bone on that side, the current leg is like an above knee leg but i kneel in the socket so my knee is bent at 90 degrees- it makes the socket an odd shape and llimits the clothes that i can wear etc. If i can get to a normal weight, I will have excess skin on that thigh that willneed to be dealt with ( the socket goes up to my butt) but i woul also like them to remove the lower part of the knee joint- that would leave the entire thigh bone so that i can still weight bear through the end of the leg but cosmetically the prosthetic limb would look far more normal- it may even be possible to have a limb that doe not need a waist harness, a suction socket would be great!

[redgrldj]

[quote=kebsa;122535]OK, i am getting warmer and warmer on the idea of wireless access, i will just have to do a bit of research on the best deals around at the moment.


Kebsa.. Wireless is the only way to go.. I am actually sitting in the garage with my laptop, because everyone else is still sleeping in the house.. If you need help finding a good wireless deal, I can ask my hubby to find a system for you.. I can't really explain his job, but lets say he helped the MgM hotel corporation decide on what networking systems to use throughout their Las Vegas chain.

[kebsa]

Thanks but i am in Australia so i am not sure he could help. the best deal i have found so far is $29 per month including 2GB of downloads and no charge for the modem (USB Modem). Not sure how that compares with the kind of prices you guys have

[redgrldj]

Thanks but i am in Australia so i am not sure he could help. the best deal i have found so far is $29 per month including 2GB of downloads and no charge for the modem (USB Modem). Not sure how that compares with the kind of prices you guys have


Thats not bad...Do they install it for you.. BTW my hubby works with a World wide Company.. If you run into problems let me know and I'll have him talk to his counterparts near you..

[kebsa]

Thanks, Its a simple USB modem and self install software, I self installed my broadband set up at home and that includes a network for my laptop to access broadband at home and i managed that OK, it took me a while to figure out the encryption to keep the network secure but i eventually managed

[Dustbunny]

My sister does Stained glass, what you call leadlighting. She got into it when I bought the tools and took a class. While I love the designing and the beauty of the different glasses, the sounds of scoring the glass and cracking it and people tossing scrap into the trash can set my nerves on end. I gave all my mostly new tools to my sister who has enjoyed it for years. She made a beautiful lamp shade with tulips for me and I treasure it.
I much prefer stone carving, though don't know why the hammering is soothing to me. My shoulders get flareups from the constant impact. I'm hoping to find both the time and money to buy an air hammer that will stop the constant inpact on my shoulders.
I am never happier than I am when creating something. Most of my time is spent on politics, which I feel really helps people, my party is concerned with the human condition, hunger, education good jobs, etc. But I put in so much time I feel depleted.
Thanks for taking the time to explain the different types of MS. I feel a little less ignorant now. :0) Always a good thing!
Let us know if you go wireless. I always worry a bit when you stop posting. DB

[A1ikou]

Karen...short and sweet...YOU ROCK :clapsmiley::yourock:
I admire you, I think you are an inspiration and your ability to keep on going in the face of some of the adversity you have in life is a marvel to me.
Long may you reign!

[kebsa]

Ali, thank you for the kinds words- you are never too far away with encouraging words!

DB- its funny how what sets your nerves on edge seems to be what i find relaxing- i think its a power thing, something about taking something as fragile and brittle as glass and being able to get it to act the way i want! Stone carving sounds neat too! I love working with my hands and love to give new things a go! There is a Woodcarving academy near me that runs courses for beginners and one of these days i want to give that a go but i never seem to have the time at themoment. I really should clear my spare room out and set it up as a workshop- i have not done any leadlighting for quite some time but i saw a lamp design based on one of the old tiffany designs that i would love to have a go at!

As for the rest of life, i am slowly getting back on track. I am excercising a good deal in 3 half day sessions at the rehab centre. i have gotten back to walking around 150 meters in short hops with a brief rest every 20m or so- i am working on decreasing the breaks and walking more each time at the moment- I feel good when i am at rehab but it really takes it out of me! I was at rehab yesterday and today i have felt really wiped out, i barely shifted before noon! and i have not done a lot since then! hopefully as my fitness improves and as the MS settles down that should improve- i think a good deal of it is the MS fatigue, in the US there are a few meds they sue to treat the fatigue but here they say that they don;t really work so will not prescribe them, i jsut get told to modify my activity arounf the fatigue and that is so frustrating- i have said before that it is more than just feel tired, it can be tough to have the energy to sit up let alone do anything! tis one of the aspects of MS that frustrates me the most- still overall i am better than i was a month a go so that is a plus!