[The Black Sheep]

Welcome to the forum Pink Cloud! I'm also a Thoracic incomplete, T2-T7... I'm not really sure. Actually, no one is really sure. I had a blood infection when I was 13 and had fallen off a trampoline. I walked away from it for 5 more days before the infection in my blood entered my spinal cord when I had hit it, probably from a small bruise or break. The swelling did me in, though, and squeezed the nerves. In my MRIs, there is no break, and just an iddy biddy amount of swelling at T7. About a year afterwards I saw an acupuncturist who thought there was some damage at T2 in my MRI pictures, so I guess that was a gray area about what my level was. Just 2 years ago I had another MRI with a much better picture, and there's a small gap in the nerves at T5... So I think I'm actually a T5. It's been a total of 12 years now, mostly paralyzed. =)

Anyhow, long story short - I have most of my sensation, but little movement. I can wiggle my toes a little, bend my ankles a little, straighten my knees and pull my hips up just a little. My abs are weak, but I can breathe normally and use my arms completely, so, for that I'm very, very happy.

In the forums you'll see a wide range of injuries, and some of the least expected have made so much progress. An incomplete injury is definitely a hopeful one, and I wish you the best in any recovery you get. This place has been such a helpful, encouraging place to vent and learn for me. I hope it's the same for you.

[pinkcloud]

jscott92064, on 12 August 2010 - 11:03 PM, said:

My husband gets autonomic dysreflexia when he is either constipated or has some bowels that are ready to come out. It sounds like he gets some similar feelings to yours. Since we're getting personal..(ha ha) there are some days when he's in alot of pain and I have done his bowel program for him in bed. I can feel stool just inside his rectum ready for me to pull out. So I do that and then stim him more to get what I can out and he feels better and the dysreflexia goes away. (When I spoke about pain in the previous sentence, that is the excruciating nerve pain that he has just started to get and not the dysreflexia that comes when he is late at cathing or he has to poop. Initially, he would get a headache in his right eye and so he would know when he had to cath. He no longer gets headaches.

I imagine cathing must be harder being female.

As for the bowels, he hasn't been able to figure out a regular time that will work for him and I think he needs to do that. He passed out on the toilet once when he was trying to poop on his own. Dr. says there's some nerve he was sitting on that will do that --a beagle nerve???

Hi jscott

This is sooooooo strange - your husbands problem is same as mine although i dont have anyone here to help me. I have had this trouble for about a year or so before they found the sci. I also get pins and needles type tingling in my buttocks area too. I am too scared to go toilet for bowels when I am in home alone and luckily I take lactose so my self-made programme means I go in the mornings whe my son is around the home, incase I pass out and he could call for help. The fear is so awful and you are so brilliant to help him - I cant stress to you how kind,caring and secure feelings you must help provide for him. It wasnt til after the operation I had the 'earthquake headache' symptoms though.

I thought I was alone with this problem. I could cry with relief at your description.

I also get a sciatica type pain start in my left groin region that shoots down my left leg when I need to go toilet.

Does your husband ever get a pain in his feet - like someone is stabbing him from underneath the foot?

I will look into getting that cd you mention if you find its any good. I listen to a artist called moby. He also does charity work for 'music has power' which recogises music helps healing for neurological problems, so am very interested. I too listen to sea sounds too. You are right - It sure does help. And for me to hear the the 'stuck in a cardboard tube' feeling went away gives me so much hope.

Thanking you kindly

[pinkcloud]

The Black Sheep, on 13 August 2010 - 01:30 AM, said:

Welcome to the forum Pink Cloud! I'm also a Thoracic incomplete, T2-T7... I'm not really sure. Actually, no one is really sure. I had a blood infection when I was 13 and had fallen off a trampoline. I walked away from it for 5 more days before the infection in my blood entered my spinal cord when I had hit it, probably from a small bruise or break. The swelling did me in, though, and squeezed the nerves. In my MRIs, there is no break, and just an iddy biddy amount of swelling at T7. About a year afterwards I saw an acupuncturist who thought there was some damage at T2 in my MRI pictures, so I guess that was a gray area about what my level was. Just 2 years ago I had another MRI with a much better picture, and there's a small gap in the nerves at T5... So I think I'm actually a T5. It's been a total of 12 years now, mostly paralyzed. =)

Anyhow, long story short - I have most of my sensation, but little movement. I can wiggle my toes a little, bend my ankles a little, straighten my knees and pull my hips up just a little. My abs are weak, but I can breathe normally and use my arms completely, so, for that I'm very, very happy.

In the forums you'll see a wide range of injuries, and some of the least expected have made so much progress. An incomplete injury is definitely a hopeful one, and I wish you the best in any recovery you get. This place has been such a helpful, encouraging place to vent and learn for me. I hope it's the same for you.

Hi black sheep

Thanks for replying and the encouraging message. I notice how you concentrate on what you have got and not what you have not got. And this is what I am trying hard to learn what to do - I have always done it in other areas of my life, I have never had much money but I save up and buy the best things I can. And I am happy for this.

Its just that I always had my physical health and the ability to take my sons out and about and visit friends but now thats gone, I am greiving for what I have lost. Its not that I am comparing myself to an olympic athetletic winnner and want that kind of physical body - but one where I didnt have to rely on my son and others would do.

But then I see people like you on the forum and all of the people whom have replyed to my thread. I remember that I really am lucky. Because like you I work hard and am happy with what I have worked my body to do.

You pointed out a few things which I had forgotton about myself, like you - i can breathe properly which I had danger of not doing (I came out of the operation not able to breathe fully at all and felt I was suffocating)I still find it hard to take deep breathes but work hard at it. I am sorry to say that I dont help myself here. After 3 years of non-smoking I started again as I found it helped with me the stress.I can feed myself (even though I do drop food down me as I cant bend forward properly) and I can walk and sit up. And even though I have awful pain 24 hours a day at least I can do these things. Therefore I look at myself and think And I remember too I had 30 odd years with full bodied life. I cried when I read your story that you had your problems start at 13, out of empathy for you and admiration.

I also see the flip side and think I would rather be like me and others on here, than some of the abled bodied people I have met as strangers,whom smirk at me when I am walking along with my stick or walking trolley (I cant carry things so use a mobility trolley). Inside I think, 'I was once like you - and I know that life as an abled bodied person isnt all perfect. But if smirking at another person whom is different to you, is what it takes to make you feel superior in life, than I would have my disability with all its pain anyday, with the insights and strengths it has given me'.

And them insights grow more each time I look at this forum. Thanks for the encouragement

[Angela250153]

hi pinkcloud I feel the same as you in that I am very lucky to be able to do so many things for myself, but also that I had 52 years of being ablebodied and doing sports, travelling to see friends and taking long hikes in beautiful countryside. I also am very lucky to have a guardian angel living around the corner to me who pestered me to go to hospital. I was told that less than a month later and I would never have walked again.

I am originally fom Germany but have lived and worked here for the last 34 years. My family all live in Germany and I guess due to the distance we are not very close. I also never had the fortune to meet the right person and have a family of my own so I am very glad that I can still do so much for myself and the only help I have is someone coming in once a month to clean my flat properly and the occasional grocery delivery.

GP's in this country have a lot to answer for. I have never been Miss twiggy but when I went to my then GP about my increasing balance problems and pain in my hips and legs I was just tersly told that it was 'all to do with my weight'. When a patient is just a little overweight all too often they put everything down to that even when it turns out later that there was a condition that had nothing to do with it.

As for the bowel and bladder issues. I can feel when I need to go but then I have to be quick so the tube thing you use it not an option for me. I have a bottle at night but in the daytime I can make it to the loo. Yes the catheder is not that pleasant but I find it more convenient when I am at friends and it is better when I am on a long car journey as I don't have to worry about finding a place to stop. It is also very discreet. A few of my friends know that I have it but anyone who doesn't isn't any the wiser

Apparelyzed was one of the first forums I found after I came out of rehab and was able to get on the internet and it has been the best and most informative place for me to learn. Much more than I could ever learn from the medical profession.

[jscott92064]

Hi jscott

This is sooooooo strange - your husbands problem is same as mine although i dont have anyone here to help me. I have had this trouble for about a year or so before they found the sci. I also get pins and needles type tingling in my buttocks area too. I am too scared to go toilet for bowels when I am in home alone and luckily I take lactose so my self-made programme means I go in the mornings whe my son is around the home, incase I pass out and he could call for help. The fear is so awful and you are so brilliant to help him - I cant stress to you how kind,caring and secure feelings you must help provide for him. It wasnt til after the operation I had the 'earthquake headache' symptoms though.

I thought I was alone with this problem. I could cry with relief at your description.

I also get a sciatica type pain start in my left groin region that shoots down my left leg when I need to go toilet.

Does your husband ever get a pain in his feet - like someone is stabbing him from underneath the foot?

I will look into getting that cd you mention if you find its any good. I listen to a artist called moby. He also does charity work for 'music has power' which recogises music helps healing for neurological problems, so am very interested. I too listen to sea sounds too. You are right - It sure does help. And for me to hear the the 'stuck in a cardboard tube' feeling went away gives me so much hope.

Thanking you kindly
[/quote]
[/quote]

I asked my husband about the cardboard tube feeling and he says he still has it, but not as badly as before. He is about 9 months post injury so maybe the farther he gets into his healing, the better it is?

Yes, he gets pain in his feet and knees too. What I do is take an icepack and put it on his feet (or around his knees) for two minutes. Then I put a heat pack on for two minutes and then I alternate back to the ice. I do this for 10-15 minutes and that usually takes the pain away or lessens it. (I learned that when I had some nerve irritation in my arm years ago.)

He has not gone to the Pain Clinic yet because he is in PT and they were thinking it might be too much for him at this time. (He was on bedrest a good part of this year and is not very strong yet.) It is hard for him to have too many appointments. As I write this, he did his bowel program this morning, but he feels nauseated and I'm not feeling comfortable leaving him until his attendant gets here.

The website for the subliminal cds is http://southwestsubliminal.com/ I have used these for years (especially the Stopping Procrastination" one when I couldn't get myself motivated to get all my work done. I only caution you to not listen to a single one too much as it can be overload. For example, you will stop procrastinating and start to get things done --which is great until you realize you are up three nights in a row because you absolutely MUST get whatever it is done now. You'll know when you've listened too much.

Let me know if you try the ice/heat therapy I use and if it works for you.

All the best!!!! You know - every time you reply to me, it makes me feel good to like hey, I'm starting to become knowledgeable as I cruise on this crazy ride with my husband. So ask away, vent to me, whatever. Thanks!

Jocelyn

[pinkcloud]

Thanks so much Joceyln,

I am going to try the hot/cold compression for definate. I feel you give real good knowledge, being a carer to your husband provides you with much insight too and is most appreciated by me and I am sure others here too.

I laughed when you said that about the cd's I never thought of it that way before . I go check out the site for that healing one you metioned. And some other cds to keep the balance right I'll keep you posted.

Best wishes to you both

[pinkcloud]

HI Angela

Them catheters dont sound too bad then. My nurse frightened me when she bought a size 14 round but I needed a size 10 she said. Ouch !!!!! Put me off for life I'm glad you manage well with them.

Germany hey - cool - the country of michael and ralph shumacher (formula one). They are yummy.

I never met the right 'one' either to have children with - in fact he was wrong in the worst way. I am single and have been for some time now (by choice, I love having men as platonic friends - but in a relationship way, its just not for me) so I understand about being independant - just in a different way.

I too am not close to my family and although its not as far away as yours, its still tough. I never felt lonley in the world til I had SCI. Then the world became a big place and i was trapped in a very small part of it. On top of that i didnt feel safe anymore as my faith in the nhs dropped to 10 from 100%.

I too have a good few close guardian angels like you - and its true our soul mates are the friends we choose to have as our families. Who needs blood ties when there are halos hey Its great you get a good clean to your home - its good for the self-esteem and feels fresh again.

And a good grocery shops fantastic. I dont have a credit/debit card so cant book on line. So up the local shops I go which is ok but limiting.

I hope that you can get out to the countryside. I am lucky that I live 5 minutes walk away from the country side. I love the peak district and cornwall best for walks. Its a dream away but I will get there again - even if its just the flat walks. Just need the ability to drive again first then I be off with me muddy boots again. Good for the soul. And the mind

[jscott92064]

pinkcloud, on 15 August 2010 - 08:13 AM, said:

Thanks so much Joceyln,

I am going to try the hot/cold compression for definate. I feel you give real good knowledge, being a carer to your husband provides you with much insight too and is most appreciated by me and I am sure others here too.

I laughed when you said that about the cd's I never thought of it that way before . I go check out the site for that healing one you metioned. And some other cds to keep the balance right I'll keep you posted.

Best wishes to you both

I would like to hear how you are doing and if any of these ideas work for you.

It's funny but I never thought I'd become such an expert on peeing and pooping. I'm examining his peebags to check for color, quantity, etc. And his pooping, well, here's a funny one for you. He went through some tough times with constipation and I had all my girlfriends dedicating their morning "constitutions" to my husband. I asked them all to say "S..t happens for Steve"......(not to him, but FOR him.) Let it flow, let it flow, let it flow. Talk about the power of frigging prayer/meditation/etc., and just darn humor!!! And you know what --s..t did start to flow for him!!!!

Oh, and before each meal, we would say "Together through all with love in our hearts".....and then this SCI happened and we needed the humor so now we say "Together through all with love in our hearts, through the poops and through the farts and if by chance your farts begin, may I not be standing downwind!!!"

[pinkcloud]

jscott92064, on 16 August 2010 - 12:33 AM, said:

pinkcloud, on 15 August 2010 - 08:13 AM, said:

Thanks so much Joceyln,

I am going to try the hot/cold compression for definate. I feel you give real good knowledge, being a carer to your husband provides you with much insight too and is most appreciated by me and I am sure others here too.

I laughed when you said that about the cd's I never thought of it that way before . I go check out the site for that healing one you metioned. And some other cds to keep the balance right I'll keep you posted.

Best wishes to you both

I would like to hear how you are doing and if any of these ideas work for you.

It's funny but I never thought I'd become such an expert on peeing and pooping. I'm examining his peebags to check for color, quantity, etc. And his pooping, well, here's a funny one for you. He went through some tough times with constipation and I had all my girlfriends dedicating their morning "constitutions" to my husband. I asked them all to say "S..t happens for Steve"......(not to him, but FOR him.) Let it flow, let it flow, let it flow. Talk about the power of frigging prayer/meditation/etc., and just darn humor!!! And you know what --s..t did start to flow for him!!!!

Oh, and before each meal, we would say "Together through all with love in our hearts".....and then this SCI happened and we needed the humor so now we say "Together through all with love in our hearts, through the poops and through the farts and if by chance your farts begin, may I not be standing downwind!!!"

ooooo this is brilliant. You real understand how it must feel to know when we finally have gone thorough it all and we manage to go toilet and it feels like such a proud moment .

I mentioned you on a thread to loving sis - how you have helped me see things from the other side of SCI. I show your posts to my son and it helps him so much too - he is only 14 bless his heart and it helps me understand what him and my friends may feel.

As time goes the lyrica 300mgs a day real feels as though its working on my 'tight band of pain'. I dont know if your husbands on it - the only down side is that it does add weight - but maybe it wont on everybody.

Thanks for bringing some good humour into life - there can never be enough

[Angela250153]

hey pinkcloud I might just make you a tad jealous. Whenever I go to Germany I pass the Michael Schumacher go-kart centre just west of Cologne and it is a marker for me to turn south shortly.

I have to say I like the freedom catheders have given me. Even my friends have commented that I am much more relaxed when visiting them. I can stay longer than just an hour and I don't have to worry about how much coffee or water I drink.
Being on my own also has the advantage that I HAVE to do things for myself. My little bit of washing up takes me along time but it is also a good way to do some balancing and other little exercises to avoid standing still for too long.

[Angela250153]

jscott92064, on 16 August 2010 - 12:33 AM, said:

I would like to hear how you are doing and if any of these ideas work for you.

It's funny but I never thought I'd become such an expert on peeing and pooping. I'm examining his peebags to check for color, quantity, etc. And his pooping, well, here's a funny one for you. He went through some tough times with constipation and I had all my girlfriends dedicating their morning "constitutions" to my husband. I asked them all to say "S..t happens for Steve"......(not to him, but FOR him.) Let it flow, let it flow, let it flow. Talk about the power of frigging prayer/meditation/etc., and just darn humor!!! And you know what --s..t did start to flow for him!!!!

Oh, and before each meal, we would say "Together through all with love in our hearts".....and then this SCI happened and we needed the humor so now we say "Together through all with love in our hearts, through the poops and through the farts and if by chance your farts begin, may I not be standing downwind!!!"

Your post really made me laugh out loud. I remember in the beginning I had a lot of trouble with my bowels as well. Mainly it being very hard and I had to help it along a bit.

I've found that a teaspoon of flax/lin-seed in some yoghurt or a couple of sticks of licorice a day can help things along very nicely.

This post has been edited by Angela250153: 16 August 2010 - 02:46 PM

[pinkcloud]

Angela250153, on 16 August 2010 - 02:39 PM, said:

hey pinkcloud I might just make you a tad jealous. Whenever I go to Germany I pass the Michael Schumacher go-kart centre just west of Cologne and it is a marker for me to turn south shortly.

I have to say I like the freedom catheders have given me. Even my friends have commented that I am much more relaxed when visiting them. I can stay longer than just an hour and I don't have to worry about how much coffee or water I drink.
Being on my own also has the advantage that I HAVE to do things for myself. My little bit of washing up takes me along time but it is also a good way to do some balancing and other little exercises to avoid standing still for too long.

ooooo Angela how exciting is that? hey, next time to could email me a picture of the sign. I would travel to Germany just to see him, you must be soooooo proud to have him as your birth-lands hero. I think he is just so lovely looking. Maybe I could shut my eyes and think of him when I try and use a catheter and it wont be so bad ? It would put my mind of it (oh I forgot I need to open my eyes and use the mirror the nurse gave me) Seriously though I ought to use a catheter as its not good as I do have residual as I dont know when I have emptied fully. I try and be brave. It would be lovely to drink what I want. And when I can drive and work again I know that its a must. Any ideas how to get around it in my head would be great. You have gave me two good ideas already. Its mind over matter I know

And you sure are right about washing up - I have to do that by myself. Me boy does emotional support and pushing me chair/stops me falling/goes to the shop etc. And my deal with him is that I would do all the other stuff. Because I cant twist and bend, I too can balance ok-ish and I feel like a ballarina (a 'britains got talent' reject kind of ballarina to on-lookers) beats standing still though hey (oh its so great that someone else understands me on that one) . Changing the bed sheets is another matter - moving a quilt feels like trying to move 5 packets of potatoes. Phew I am yet to have the strength to tackle that one

Its lovely and sunny here is Warkwickshire, hope you are getting some too.

Best wishes

[Angela250153]

haha here is a link to the website in English http://www.ms-kartcenter.de/com/ It is right next to the motorway I travel on. It is only abt a 5 hour drive from Calais. I like she Schumachers but I am not really a Formula 1 fan. As for watching sport I am more into tennis and horse events.

I found using a mirror for inserting a catheder pretty useless. After some trials and errors I found that laying on my bed and inserting it by feel worked much better. Off course you have to remember to attach the bag to the cath first I have to say my urology nurse was awesome in guiding me through the process.

Gosh people would have a heart attack if they watched my doing some hoovering holding on to the frame with one hand and shoving the hoover back and forth with the other or sweeping the kitchen floor leaning against the base units

My accupunture is going well and I hope to reduce my Gabapentin to 600mg a day soon. The new crop of GP's at my surgery are really good and very much on the ball. The one who does the accupunture said that she had never met someone with an incomplete SCI who walked and she has actually been reading up on things to learn more.

[jscott92064]

Your post really made me laugh out loud. I remember in the beginning I had a lot of trouble with my bowels as well. Mainly it being very hard and I had to help it along a bit.

I've found that a teaspoon of flax/lin-seed in some yoghurt or a couple of sticks of licorice a day can help things along very nicely.
[/quote]


Hadn't thought about the flax/lin-seed in yoghurt. He was on bedrest for some time (pressure sore from the hospital) and then now when he takes a percocet, he tends to get constipated. He eats those metamucil fiber cookies every day and he also drinks miralax every once in a while.

I read what you wrote about Formula 1 --my husband LOVES F1. One day I want to surprise him by taking him to a race. Of course, he dreams much bigger than that - he dreams of going to each F1 race during a season, just following them from country to country.

[jscott92064]

As time goes the lyrica 300mgs a day real feels as though its working on my 'tight band of pain'. I dont know if your husbands on it - the only down side is that it does add weight - but maybe it wont on everybody.

[/quote]


Pinkcloud - how is your 14 year old doing around all this? It's not easy on kids to see their parents go through this.

Also, why does lyrica cause the weight gain? I recall hearing that and was not sure why. You are on twice the amount of lyrica my husband is on. Did you start out with that high of dosage?

[pinkcloud]

Angela250153, on 17 August 2010 - 10:53 AM, said:

haha here is a link to the website in English http://www.ms-kartcenter.de/com/ It is right next to the motorway I travel on. It is only abt a 5 hour drive from Calais. I like she Schumachers but I am not really a Formula 1 fan. As for watching sport I am more into tennis and horse events.

I found using a mirror for inserting a catheder pretty useless. After some trials and errors I found that laying on my bed and inserting it by feel worked much better. Off course you have to remember to attach the bag to the cath first I have to say my urology nurse was awesome in guiding me through the process.

Gosh people would have a heart attack if they watched my doing some hoovering holding on to the frame with one hand and shoving the hoover back and forth with the other or sweeping the kitchen floor leaning against the base units

My accupunture is going well and I hope to reduce my Gabapentin to 600mg a day soon. The new crop of GP's at my surgery are really good and very much on the ball. The one who does the accupunture said that she had never met someone with an incomplete SCI who walked and she has actually been reading up on things to learn more.

Hey this is great news Anglea. My surgeons and doctors were in shock I could walk too. We sure are heros. I say make sure you let her know how hard it is and that mental attitude is the key. Its lovely your gp is reading up on your case, thats a real boost to hear. Plus its great to see they take alternative rehabilitation like accupuncture seriously. I say them people whom carry bags up the mount everist must have disc problems and they dont have the health care we have. I hope she will write a paper on it and use you as her subject. How cool would that be hey

Have they spoke to you about taking pregabalin like me? I heard its real hard to get off. I remember coming off Gabapentin in hospital was hard but that may have been the morphine withdrawls too. I bet accupuncture will help you.

I spoke to my physio about accupuncture and she agrees its great for many people. Sad for me she dont do it no more. I am off to the gym with her friday for the first time. And will go to my GP shortly about accupuncture. Maybe it could stop me smoking too.

Wish me mental strength for the gym - I remember you are doing your hard work and it will spur me on.

I think your great doing the hoovering and sweeping, that in itself if great physio. Just keep your mobile phone in your pocket when you do it i say. Then if you tumble then at least you are not left alone. Thats a great acheivement. I proud of you. It does sound scary though.

I be checking out that website. Forumla ones ok and I'll watch it if a friend is round. Otherwise I used to just watch the end of the race to see him on the podium.

I'll have an experiement with the catheter doing it your way. I'll just breathe deeply. Thanks for the help

[pinkcloud]

Pinkcloud - how is your 14 year old doing around all this? It's not easy on kids to see their parents go through this.

Also, why does lyrica cause the weight gain? I recall hearing that and was not sure why. You are on twice the amount of lyrica my husband is on. Did you start out with that high of dosage?
[/quote]

Hi Jscott

Luckily I am very open with my son and we work thorough the tears, the hard times and the great acheivements times well together. I think it hit my boys harder as I was very much a tomboy and would go walking by the sea climbing rocks, bike riding etc together. We are learning how to do different hobbies now and keep working to keep the dream alive, that I can manage to travel to the seaside again. We are working on it. I cant even imagine how hard it is for them and dont think about it too much or I could cry all day.
To manage to take him out for the day with his friend, see the sunlight shine on his hair and him laughing and being care free pushed me to stay out even though I was in a lot of pain. It was worth every second. And the reason for me to push on and on.

As for lyrica I started on 75 mg twice a day - it made me not care about the pain as much. Then I went onto 3 times a day and now I am on 300mg. I dont know why lyrica puts the weight on. Its a difficult one for me to get my head around and then I just remember, that other people whom are this weight are attractive, so why do I give myself a hard time. As long as I am fit and strong and active as I can be I am ok. Plus I remember I am not dead and I can walk so I need to think of me body with love, not give it a hard time because it looks different to before.

I must say about lyrica though it does dampen the reaction to eye candy. If you know what I mean. I do appreciate looking at Michael Schumacher and rock star men with tattoos still, but in the way its nice to look at a new dress, if you know what I am. The 'interest' is dead somewhat (although it wont stop me looking at michael schmachers website that Angela kindly directed me too . If you and your husband do get to live the dream and go and see the races try and get a picture for us Good job I havnt got a husband who is like Michael Douglas is all I will say (I am shy on writing about such things)

Would you please ask your husband if he has a kind of throbbing horrid pain in the abdomen sometimes. Its that bad that before I had the diagnosis one doctor thought I may have had an aeortic problem. It does go away after a while but it is scary. Even though I know nothing bad has happened on the many times its happened before.

p.s. I put an answer onto your thread about the sad weekend that you had

[jscott92064]

Would you please ask your husband if he has a kind of throbbing horrid pain in the abdomen sometimes. Its that bad that before I had the diagnosis one doctor thought I may have had an aeortic problem. It does go away after a while but it is scary. Even though I know nothing bad has happened on the many times its happened before.

p.s. I put an answer onto your thread about the sad weekend that you had
[/quote]


Pinkcloud --all your kind words are giving me a big head! Seriously - thanks. You're helping me too because now I am starting to ask you questions...... And your post to my other "worst weekend thread" was spot on.

With our daughter, we are starting to engage in community events. Here in San Diego, there's alot of free events for disabled--like a free "day on the bay" where there's adaptive equipment for him to take our daughter kayaking. I think it helps her alot to be around other kids with parents going through the same thing. Also, to hear her father laughing again with her is wonderful!!!

I did ask my husband whether he had any pain in his abdomen and he said he gets "pressure", but not pain. His doctor thinks it may be due to gas, but he doesn't want him taking gas-x and I'm not sure why.

I do notice his legs seem swollen by the end of each day and I think he needs to keep his legs up more when he can.

However, he was feeling really good yesterday --exercise seems to do wonders for him. He showed up at my office and "kidnapped me" for lunch.

So, he does take lyrica, but that doesn't slow him down in the romance department. In fact, more women seem to be flirting with him these days.

We honestly don't know what went wrong during his surgery to render him paralyzed. We are currently exploring our options for a lawsuit. The only problem there is that doctors protect their own and it's a search to find a doctor who will do right by us. We are now looking for an expert out of state. For now, we just make the best of it. And we are fortunate to live in San Diego because it is so gorgeous here!

[pinkcloud]

You are most welcome. If I find a kind person I will tell them, I am not shy in telling people how I feel. Equally if people are mean I also tell them thatthey are acting mean too - so over the years, people tend to respect my opinion on things . I often find in the country anyway that rather a few, find it difficult to accept a compliment and many go shy . My rule of life is if someone shows kindness, it best to let them know. I am all for encouraging people to keep blossoming. Its like that film 'pay it forward' in a way

I just heard on the news that michael doulgas is unwell - not sure of the details so I apologise for my past post - I was referring to him being 'rather a lot into the ladies' before he married catherine zeta jones.

Asssssss for the tummy, thats it - pain and pressure like something is going to burst out - I bet it is gas then. Either that or some kind of strange muscle spasm I reckon. Or maybe a mixture of both. I dont feel so scared now.

This is great that your daughter and husband are out doing these activities. It was my sons birthday just gone and he said it was the best day of his life when he knew I had come out of the operation and that was the best present he could ever have had. Now he sees me getting out and about, smiling and being able to leave me on my own whilst he goes out to see his mates is magical for him he says. Seeing your husband getting exercise must really be a boost for your daughter too I bet. And these moments we have makes up for all of the pain

I am really happy that romance is still going strong with your husband and it bought a smile to my face when he took you to lunch. This is soooo cute.

I still get rather a lot of attention from men and I ignore them as I'm old-fashioned and am just interested in being a mum to my children. A few of them think I would be grateful to them paying attention to me, because I have a disability and ask me out-right questions like 'can you still do it then?' I say to them 'well if i could before, you sure just made sure that I wouldnt be able to do it now thanks to your chat up line '. I wouldnt mind but I dont go out to pubs etc, thats just me walking down the street, sitting on a train etc etc. I also tell them that I think they must have been reading too much porn, if they reall think that ladies are swooned by that kind of chit chat

Taking doctors to a law case: As a medical secretary I came accross a lot of people whom took others to court - and because it takes so long, the fact you have to be cross examined, and have to travel out to see lots of doctors for different opinions (as the defense does its hardest to get answers that will support them), I decided not to take my case to court (what with the bullying from nurses in hospital, mis-diagnosis by 3 hospitals etc etc) I had much to back me up for a good case.

Thing is, my surgeon who did the operation and a good handful of doctors did a great job in not giving up on me to find what was going on, during the past few months before my operation. Because of this, I decided not to take the case to court. Having to re-live everything over and over again, would drive me down.

Maybe you could ask others whom have been in the same situation and gone to law for the same problem, what it is like, how long it takes,the costs to you involved and what was the outcome was before taking it up? I can only speak as an on-looker from my past administration role and speaking to lots of people to make up my mind. Maybe you could too? Its a huge step and hopefully one that you have great success in. It can take a while so maybe writing notes about the experience whilst its still quite fresh to the mind could help should you choose to go ahead?

It sure sounds lovely where you live. Its very nice here in england too in many ways. I have not always lived in the countryside but where it is, is very green and lovely. Mostly thanks to much of the rain we get here which isnt always lovely. By the sounds of it though I would rather live where you do I reckon

[Angela250153]

hi pinkcloud you really have a way with words to make anyone feel great. Thank you, but you are also doing awesome. It can't be easy having to cope with 2 little ones when you suddenly find yourself disabled. How old is your other son and how did he accept things? When I was in Germany I must admit found it very hard when my great-niece and my great-nephews (2 live right next door to my mother) were playing in the garden and I could not join in the running around and playing games with them.

I used to take the Pregabalin, but when the pain stayed pretty much the same despite being on the highest dose I asked my GP to try Gabapentin. I am on a medium dose with those but the thing I discovered which made quite a difference was that my balance improved. I went back on the Pregabalin for 2 weeks too test this and low and behold my balance got worse again. It might be there is something in there that makes me feel more giddy.

As for the pain and pressure you and Jocelyn's husband experience in the abdomen, I find I get that an hour or so before I have to go to the loo. I do get a lot of gas then and unfortunately just about everytime I move I It ok when I am at home but very embarrassing when I am out.

It's great that your physio is taking you to a gym. I wish I could go, but with my current pain issues I don't think it would be a good idea as I don't think they would let on to the equipment I really need like the treadmill.

Have fun when you get there.

[pinkcloud]

Hi Anglea

I went to the gym and it was awful - I sobbed and sobbed like a baby. I went on the exercise for 5 minutes and thought I was doing great but then when I got off I couldnt feel my legs anymore.

Then I got on a ball and I did this twist thing. Again I sobbed and sobbed.

I get soooooo dis-heartened because I go into denial, think that I am doing great and then do a movement - just a normal one to other people and I am back to feeling like I did the first day I got off the hospital bed. In too much pain and useless.

I get so dis-heartened and it makes me want to stop and I think, I am ok I can walk ok-ish. Why do I need to do anything else?

Then I carry on. I am going to hypnotherapy, as black sheep here is a beleiver in it too and it helped me to see I need more help here. Just to keep me brain beleiving I can do it. Two years of injury pain is getting me down and then 5 months of post op pain is just as horrid and they told me I would be more comfortable in 6 months time. So thats another disappointment. I'm strong but not strong enough to keep dealing with these let downs of reminders what I cant do. I am only strong in dealing with things that I can do.

I just need a top of of moral boost to help me along this next path

[jscott92064]

pinkcloud, on 23 August 2010 - 03:32 PM, said:

Hi Anglea

I went to the gym and it was awful - I sobbed and sobbed like a baby. I went on the exercise for 5 minutes and thought I was doing great but then when I got off I couldnt feel my legs anymore.

Then I got on a ball and I did this twist thing. Again I sobbed and sobbed.

I get soooooo dis-heartened because I go into denial, think that I am doing great and then do a movement - just a normal one to other people and I am back to feeling like I did the first day I got off the hospital bed. In too much pain and useless.

I get so dis-heartened and it makes me want to stop and I think, I am ok I can walk ok-ish. Why do I need to do anything else?

Then I carry on. I am going to hypnotherapy, as black sheep here is a beleiver in it too and it helped me to see I need more help here. Just to keep me brain beleiving I can do it. Two years of injury pain is getting me down and then 5 months of post op pain is just as horrid and they told me I would be more comfortable in 6 months time. So thats another disappointment. I'm strong but not strong enough to keep dealing with these let downs of reminders what I cant do. I am only strong in dealing with things that I can do.

I just need a top of of moral boost to help me along this next path

Pinkcloud.....I hear your pain and sadness and grief and frustration and fear. I hope it helps to know that I hear you and I honor your journey.

Strength is recognizing when one feels weak and disheartened and acknowledges it.

Hynotherapy is good and also please think about those subliminal cds. I use those all the time when I need a boost. We all need it. I use them all - positive thinking, overcoming fear and worry (about worn that one out!!!), memory, relaxation, and you know my old standby for work - stopping procrastination!

It's too bad we don't live closer to each other. I would love to have a cup of tea with you. I will give the British this --your tea is wonderful.

So tomorrow, I am going out into my rose garden and I will drink a cup of tea in your honor.

Tell me what color is your favorite rose --I have about 80 rose bushes in my yard so I must have your color.

So then the day after tomorrow, I will go out into my rose garden and this time will drink a cup of tea in your honor and to your color!!

One day at a time, beautiful lady, you just have to get through one day at a time. Your son's smile makes it all worth it --but you know that.

Lots of love and light!

Jocelyn

[Angela250153]

Awww pinkcloud I am so sorry that your first trip to the gym was so hard, but i am sure that it will get easier.

You have to remember that your body has taken quite a blow and it takes time to get used to having to do some things differently. When I first recovered from the op and found I could not even stand I got very frustrated and that first weeks in rehab were just like that. I wanted to run but it suddenly felt like my legs were not my own anymore. In time I learned to lower my expectation some and despite the pain just carry on and appreciate any little progress I made. They had a gym there that I was allowed to use in the evenings after some work outs with my physio. I was shocked the first time I used a motomed bike. My feet had to be strapped in and even on the lowest setting I had trouble turning the pedals by myself. I kept at it and in time I was able to cycle more and more. Then I went on a recumbent bike and my feet had to be strapped in cause they would keep falling off. Again I stuck with it and in time I was able to drop the straps. The same with equipment to strengthen my legs. At first I could hardly lift them in a t-bar and it was very painful but in time it got easier. Even now the day after I have been to hyro I am in more pain than usual but at the same time I can move around much better.

What I am trying to say is don't be disheartened and don't give up on it. You were doing something your body isn't used to and yes it was painful but the more you do it the less the pain will get. Even ABs who go to a gym for the first time get aches and pains in places the din't know exsisted.

You say you walk okish but I guess like me you sit down a lot more than before and that means in time your muscles will weaken making walking even harder. The most important thing for us walkers is to keep up our muscle strenght and you can only do that with exercise and using whatever gym equipment we can use.

I am sure your physio has done them with you, but I do a lot of core stability exercises and the ones that help a lot with leg strength and you can do anytime at home are knee squats and heel raises.

Please don't give up after that first time.

This post has been edited by Angela250153: 24 August 2010 - 09:56 AM

[pinkcloud]

Hi Jocelyn

Thank you so much for your kind thoughts and feelings, my favourite colour is sea blue, it helps me feel calm and that everything is good in life. I wonder if your garden fills you with much happiness and feelings of being contented? To be able to escape from everything into what sounds such a beautiful setting, full of nature and the wonder of the secrets lives of birds and birds that live amoungst the flowers, grass and in the air? To be sharing in that world where there are no doctors to heal - just natural ways to heal must give you comfort that we as humans are amazing and can get better in time, in many ways that could never be expected.

I was happy to pass many an hour sitting in the outdoors, be it on top of a mountain, in a horse field or a friends garden. I live a in small market town that has the old fashioned cobbles on it. Its lovely in parts - not up to the cotswolds standards by any means, but its a nice place to live. The buildings in the high street are 400 years old plus I belive. So I have never had a garden here as I have always lived in the converted apartments. If I did I would love it full of roses too. Your message took me to the image of what it must be like in your garden and I felt calm again, thank you.

I am listening to the cds of sea sounds and my hypnosis cd and it helps me relax. I shall be buying the others that you mentioned on here,I will order them from my local little bookstore soon

Tea sure is lovely and you are right its what a lot of us english drink. Its lovely.

I realise that I was beginning to give into the pain,due to my disappointments and dashed hopes. And also the reoccurance of the pain levels I had before, which I didnt think would ever come back. And I need the good feelings and relaxation to get thorough this. I guess that my 'hopes' just need to be changed a little.

Wishing you a lovely evening

With kind wishes to you and your family,

[pinkcloud]

Hi Angela

Thanks for the encouraging message, I understand exactly what you mean about the bike machine. I dont know the name for it but it was a sit down one with straps. I was disappointmented as my left leg wouldnt reach into it - a new thing I found my leg couldnt do..... I was ok pushing the pedals and enjoyed it, it was when it was time to get off I had trouble.

I hear that you hurt after every session,and I know that even ABs hurt but its not like when I was AB, I had aches and sporting pains then- but this pain can only be described as an evil pain. And I am real sure that this pain is the level of what you have too by what you describe. Maybe because I have worked so hard everyday, my mind may feel that it needs a bit of a holiday from the mental stress of it. By yours and Jocelyns encouraging messages and also my 'outside apparalyzed' friends support, I can tell my mind that it can have a holiday, which comes in the form of meditating and switching off.

I am unable to face going to the gym or swimming again for a while, and am just going to let whatever has irritated my back settle down.

As soon as this pain eases (it feels like screw drivers are stabbing me in the operation area, as well as feeling like two people are sitting on each shoulder blade - and are having a tug of war with my spine, with each one trying to stretch my spine out towards my shoulder blades) I will go back out there. I'll just have a read thorough the forums here and remember I am not the only one with this and others have been where I have, before many times and are still going strong. I just have to learn to be a bit more realistic about what my body can do, like you suggested to me.

Thanks for your support,

kindest wishes,

[jscott92064]

pinkcloud, on 24 August 2010 - 03:28 PM, said:

Hi Jocelyn

Thank you so much for your kind thoughts and feelings, my favourite colour is sea blue, it helps me feel calm and that everything is good in life. I wonder if your garden fills you with much happiness and feelings of being contented? To be able to escape from everything into what sounds such a beautiful setting, full of nature and the wonder of the secrets lives of birds and birds that live amoungst the flowers, grass and in the air? To be sharing in that world where there are no doctors to heal - just natural ways to heal must give you comfort that we as humans are amazing and can get better in time, in many ways that could never be expected.

I was happy to pass many an hour sitting in the outdoors, be it on top of a mountain, in a horse field or a friends garden. I live a in small market town that has the old fashioned cobbles on it. Its lovely in parts - not up to the cotswolds standards by any means, but its a nice place to live. The buildings in the high street are 400 years old plus I belive. So I have never had a garden here as I have always lived in the converted apartments. If I did I would love it full of roses too. Your message took me to the image of what it must be like in your garden and I felt calm again, thank you.

I am listening to the cds of sea sounds and my hypnosis cd and it helps me relax. I shall be buying the others that you mentioned on here,I will order them from my local little bookstore soon

Tea sure is lovely and you are right its what a lot of us english drink. Its lovely.

I realise that I was beginning to give into the pain,due to my disappointments and dashed hopes. And also the reoccurance of the pain levels I had before, which I didnt think would ever come back. And I need the good feelings and relaxation to get thorough this. I guess that my 'hopes' just need to be changed a little.

Wishing you a lovely evening

With kind wishes to you and your family,

I have blue primroses that come out from time to time. Too bad there are no truly blue roses. However, here's a bright colored rose for your computer desktop. I'll look for some other garden pictures to send you. If you cannot download this, let me know and I'll send it another way to you, if you would like it.

My garden is where I pray and meditate. Sometimes I look inside a flower, really look inside, and tell it my secrets. It calms me so much (albeit the neighbors probably laugh at the lady talking to her flowers - but who cares!) My flower just looks back at me and smiles and smells sooooo good. Sometimes one just wants to be heard, not so much offered advice that may not work anyway, but just heard.

I'm not a religious sort of person - more spiritual in that I find this wonderful connection with nature and find magic in it. You would love my garden --hummingbirds and butterflies come close to your face.

I hear you and hope your days get better and as I drink my tea each morning, I'll think of you. I was hoping to get back to the UK this year and I cannot travel yet until my husband is stronger. I lived there for a short time years ago, right across from Kew Gardens. If you have never been there, it's wonderful --with many, many roses ready to "hear" you, plus other beautiful flowers that may want to "listen" in too!

Lots of love and light!
Jocelyn

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This post has been edited by jscott92064: 24 August 2010 - 04:54 PM

[pinkcloud]

Hi Jocelyn

Heres my disc bulge and the amount it was pushing on my spinal cord. I have put it on here for my friend to see too. If you didnt see your husbands MRI, this is kind of what it looks like for the cord to be pressed on. I too am spiritual and its something that I have as a personal help to me. It was the doctors telling me that 'someone was looking after me, to have been able to walk with such a huge compression', that gives me comfort.

Thank you so much for the beautiful picure, I love the yellow colours that are on it too, (pink is a favorite colour of mine too) like sunshine has left some of its rays on it for you I am putting this as my screen saver and also print it as a picture so that I can have a little bit of a magic garden in my home. I would enjoy to see more flowers when you have time to put them on the computer.

I love the way that the petals have little frills on them, like a ballarinas dress. All of that talking to them has paid off I say.

Price Charles talks to his flowers too I have read. Kew Gardens? Is that the posh part of London? If so I bet the Prince would have been one of your neighbours in kew Gardens and I bet he would have come and spoke with the flowers with you too I have never been there, I went to London to watch a music concert and to go in Buckingham Palace and the London Dungeons. When I get fitter I will seek out Kew Gardens at your recommendation. Another good reason to push myself back to the gym then

This post has been edited by pinkcloud: 24 August 2010 - 06:21 PM

[Angela250153]

awww Jocelyn the area around Kew Gardens sure is lovely. Did you have a view of the river?
I live abt 30 min drive from there and have been to visit in the past, but the entrance fee sadly has now become too expensive. I also like to visit nearby Syon House with it's beautiful butterfly house.

Has your husband tried the flax/linseed yet to see if it helps with his bowels? I have found that using that and having more wholegrain in my diet has helped a lot to make bowel movement easier.

Love your flower with the water drops on them and would also love to see pics of all the flowers in your garden.

[Angela250153]

pinkcloud I also got this pain, but much less now than it used to be. I was told that it had a lot to do with the muscles around the operating area knotting. I get it mostly around the one on my lower back. What has helped me a lot is to do stretches from the head and neck down the whole body. I do the first one after getting up and sitting on the side of the bed. Because of the walking with crutches and putting a lot of pressure on them when standing up I also get a lot of pain in my shoulders. I have a massager with a long handle and massage my back and shoulders which also helps a lot.

I must admit that I have always been very good at ignoring pain and I also have a very high pain threshhold which in this case is a good thing. I also prepare myself mentally to exercise look forward to going out to the pool. Once the school holidays are over I will join up at the local council gym and even though I know it will be more painful to begin with I am already psyching myself up and and looking foward to exercising there.

Btw I also have trouble getting my legs into the pedals and need help with that and I just ask someone but the most important for me is that having with practise gone from having to have my feet strapped I can now pedal without the straps and learned to prevent my feet from falling off.

This post has been edited by Angela250153: 26 August 2010 - 12:55 PM

[jscott92064]

Angela250153, on 26 August 2010 - 11:32 AM, said:

awww Jocelyn the area around Kew Gardens sure is lovely. Did you have a view of the river?
I live abt 30 min drive from there and have been to visit in the past, but the entrance fee sadly has now become too expensive. I also like to visit nearby Syon House with it's beautiful butterfly house.

Has your husband tried the flax/linseed yet to see if it helps with his bowels? I have found that using that and having more wholegrain in my diet has helped a lot to make bowel movement easier.

Love your flower with the water drops on them and would also love to see pics of all the flowers in your garden.

Oh, I wish I had gone to the butterfly house.

Let's make a pledge that the next time I go to England, I round you both up and we head over there!

Years ago, my company paid for me to be in the UK and leased a flat for me, which was directly across from Kew Gardens so my view was the garden gates. What a great place!

Okay, now you ladies have gone and done it with asking about my gardenn --you've touched my heart because this is a joy in my life that I love to share. It seems I cannot load certain pictures, but here's another one that might make a good desktop for you.

Today my husband has unbearable nerve pain and nothing is working. Totally stinks!