Whats your disability and how does it affect your daily life??

Pauli - posted on 01/29/2011

hi, my name is Pauli. . I have mental disorders and was wondering if anyone is disabled in that way?? I am expecting a baby boy this february.

Nicole - posted on 03/07/2010

My name is Nicole Colbert and I have Myasthenia Gravis which is a nueromuscular disorder that cause severe weakness of all you involuntary muscle functions so i can relate to your everyday task. I have had a lot of days that I have just wanted to throw in the towel and give up. That is why I am here and hope I can make some really great friends.

Maria Werner - posted on 01/21/2010

Hello there moms out there, I am a disabled mom, who has mobility issues, mainly due to bone defects.. i have two wonderful children, Logan is 8 and amber is 5. My husband is too disabled, he is blind. I have been looking for friends who I can talk with with about daily life's issues and to share great achievements.. I am in Alabama. Hope I will meet great friends here!!

Desirae - posted on 01/20/2010

Hi... I'm sure you all see my name. I am a mother with severe undiagnosed vertigo. Not just a spin here and there but since I was 15 my dizzy spells have gradually gotten worse to the point where I unexpectedly and randomly pass out completely for up to 20 minutes. I also have had chronic back pain from an injury I suffered one moth before I found out I was 7 weeks pregnant. I have overcome much of my physical pain but continue to injure myself passing out. I have seen so many specialists that I feel like I am a professional patient. It has taken away time and things I am able to do with my family big time. That in it self can make a mother feel depressed. I have overcome a lot not being able to walk without assistance for the first three years of her life and just now able to dance again. The vertigo on the other hand has kept me from working since I was 22 years old. Not to mention how scarey it is at any age to wake up and notice that your child has been left unattended for up to a half an hour. She has learned how to turn me on my side and call 911 if I do not respond. Sometimes I feel like my beautiful six year old daughter takes more care of me than I do of her. She has become my guardian angel. I truely believe that... I just wish it was the other way around. I used to work in home care. For the first three years of her life I felt like I needed home care, but was unable to get help. I am currently fighting for SSDI, but I have only unexplained symptoms in their eyes. Doctors think I may have something called Meniers disease... does anyone know mor about that? There is not much I have heard about that.

Ginger - posted on 12/14/2009

Hello everyone, I'm not sure if this is the right comunity for me as my daughter just turned 14 on the 6th. I have severe degenerative disc disease and fybromyagia. I had a hard time with my back towards the end of my prgenancy. When my daughter was 8 I started losing the use of my legs and was temporarily paralyzed following back surgery. It took 6 months for both of my legs to start working again but I went back to work for about 13 months when my dr decided I couldn't do it anymore. That was 10/22/04. My husband then suffered a major stroke on 10/25/04. He has lost his speech and is permenantly disabled. Fortunately what I can't do he can and vice versa.

Christina - posted on 02/04/2009

Hi Nicola

He's good thanks, been a bit of a monkey tho.

Its really not nice is it. I had it in my leg just above my knee. It happened when I was on a plane,. I didn't move around enough and spent half the time sat on my feet. I ended up spending 1 day in holspital and the rest of my holiday in a wheelchair as well as having to go back to the hospital every day so they could check my blood. I was put on bloody thinners for 6 months.

Will is gonin to be 1 in a couple of weeks. Yeah he is a funny little charactor. Spme of the things he dose really crack me up.

Thats ok. sorry i cant tell u more about them. I just know how much it helps my mum and as your condition is simular thought might be worth mentioning.

Yeah it is. I live in the UK, down in devon actually.

I think i'm goin to go back to bed, lol didn't intend on coming on the computer. will talk to you again soon. have a good night

Nicola - posted on 02/04/2009

Hi christina,

How are you and your little boy today?

I know what you went through having those blood thinning injections, I had a blood clot on my lung in 2004 which they believed was down to my pill, so because of the hormones you have when your pregnant I had to inject my tummy throughout my pregnancy & for 6 weeks after which was horrible, especially when i was big. I will have to do it again when I have another child too.

It's quite scary isn't it having a blood clot, if you don't mind me asking where was your clot and do they know what caused it?

I see your little boy is doing really well, that's really great. How old is he now? Don't you find them so entertaining, I love watching Daisy do things, she has a little character now, I bet William has too hasn't he?

Thanks for the tip about the light box, I have never heard of one before so don't know if it will help but definetly will look it.

It's great that you have been married 19 months, do you live in USA too?

Well I am going to bed in a minute so lovely talking to you both, hope to speak to you both soon, take care x

Nicola - posted on 02/04/2009

Hi ya Amber,

How are you & Makena today? Sorry only just replying, have been out all day today and my nan's and doing food shopping! I have not been feeling so good this week, it's really cold over here & apparantly is going to get worse at least up till sunday with more snow forecast! Daisy is ok, I think she has some more teeth coming through bless her though so that's bit painful for her & brought a bad nappy rash with it!

I hope you got a better night's sleep last night? You shouldn't burn yourself out trying to catch up on housework if you haven't been feeling to good, it will all be there another day & you don't want to make yourself worse again!

I am like you though, I am always cleaning and doing household chores, I found it hard to leave it, my husband always says that to me but I have been so bad this week I have listened and rested although it drives me mad, are you like that?

Yeah they are calling it the credit crunch over here, it's really not good but as you say I think a lot of countries are in the same boat, I think it all has a knock on affect!

Yeah I know what you mean about London being modern yet historical, did you go the dungeons, madame tussauds wax works and the tower of London?  Bath is beautiful too, when I was there my husband came and stayed in a B & B for just over a week because we hated being apart so when i wasn't in treatment we went sightseeing and shopping!

Your pain management treatment doesn't sound very nice. In Bath it's supposed to be about helping you to cope with the pain better, when I went for my 2 weeks intensive physioI had 2 crutches to walk, when I came home I had 2 walking sticks so that was a step forward but when I was there I was pregnant but I didn't know that I was!

We got married on 19th July last year so nearly 7 months now. Not far behind you, did you have a lovely wedding? How much did Makena weigh when she was born?

It must of be terrible for all of you having to cope with the flooding and hurricanes, it's very sad to hear about everything that people are having to go through over there. Last summer we had quite a few towns flooding badly over here! They are saying it's to do with climate change though! So do think you will move soon?

I know what you mean about having someone to talk to that understands about being a mum with a disability, it's been great talking to both of you. Being a mum is the best job in the world but it's hard work for anyone never mind with someone who has a disability! Well hope to speak soon, take care x

Christina - posted on 02/04/2009

Hi Amber.

We're both ok thanks.

Aww bless her. The shots aren't nice at all but its good that ur little girl was so good with it.

It's basically a UV light. I'm afriad i dont know tons about them. My mums is quite big and heavy but i think you can get different size ones. If you think it will help you its fefinately worth finding out about coz they are good, well from what i've seen with my mum.

Amber - posted on 02/04/2009

Hi ya Christina. How are you today? How is your little boy?



Im pretty good though my little one isn't to happy. She had to get her 4 month shots this morning. She was pretty good though, she only cried for a minute. Now she is sleeping.



I've never heard of a light box. What is that? Now thankfully I am out of the cold but it would maybe help when I visit my family up in Michigan in the cold weather.



Well I think Im going to get some rest while I can. Take care.

Christina - posted on 02/03/2009

Hiya

I really should come on here more oftern to keep up with you 2, lol.

We are all fine thanks. William has been a little monkey but all kids are really aren't they.

When I was pregnant with Will the drs expected me to have lots of problems as i'm not exactly skinny but the only problem i had really was with my hops as they're not to great. The drs did put me on blood thinning injections for 6 weeks after Will was born but that was because i had a blood clot when i was 18.

All babies develop in their own time. William was sleeping through the night when he was just 6 weeks old and still does now, which is great!

He's been crawling since he was about 7-8 months which is good altho not so good when i dont realise hes gone behind me an i nearly trip over him, thankfully that doesn't happen too many times  He's been able to pull himself to his feet for a couple of months now and can walk round the furnature.

Amber i saw u said that u feel worse in the winter when its all dark an not nice, have u tried a light box? During the winter my mum uses 1 and it helps her quite a bit.I know ur condition isn't exactly the same as M.E but its just a thought. I dont know if  a light box what help you Nicola but might be worth finding out about it.

Glad to see that you husbands help out so much. My husband Phil is a typical bloke most of the time, I have to ask him about 3 times before he'll get off his ass. We've been married 19 months.

Wel i think ii'm goin to go and make another drink and relax before the others get up. I will come on more oftern so i can hellp up. Will talk to you both soon, Hope you both have a good day today.

Amber - posted on 02/03/2009

Hi ya. How are you and Daisy today? MaKena and I are pretty good. Im just tired though because she woke up at 2 in the morning and didn't want to go back to sleep. By the time I got her to sleep and dozed off myself she was back up at 5. She normally sleeps pretty good, so this was a rare occassion. I've been trying to get the house cleaned since I've been behind a couple days since my back had been sore.



People keep telling me that my daughter will probably develop late since she was premie, but I'm not worried. Every child develops in their own time.



I didn't realize that England was in a recession. Sounds like most countries are having similiar situations. I've been lucky to see England twice. Once when I graduated high school, then about 3 years later I went back. The first time I went my sister and I seen all the sights. I love how London is modern yet has all the historic stuff to it still. We also took a tour to stonehedge and Bath. We got to see the roman baths. That town is very beautiful. I don't blame you for not wanting to go to pain management. I know I've had some done and it isn't the pleasant of circumstances. Plus being away from your family when you're in the greatest of pain is very hard. I had a treatment where they injected medicine into my back repeatedly. It would help for about two days, then it would hurt again. So it wasn't worth the pain of getting needles suck in my back for just a short amount of relief.



How long have you been married if you don't mind me asking? My husband and I have been married for about 9 months now. It was a surprise when I found out I was pregnant. I had already had my dress, so I had to keep on taking it in so that I could fit in it. My belly grew so big.



We live about 20 minutes away from New Orleans which was got destroyed. The town we live in also got flooded, they had about 18 feet of water. Both towns are growing. Though it is still sad to see the poorer districts. They are the slowest to grow. Many people are still living in tiny trailers while their houses are getting fixed. It is a slow process. We get a lot of hurricanes, and my husband and I are going to end up moving about a hour up north, so that we are out of the flood zone. The house we are living in now flooded in the last two hurricanes we had back in August. We had to evacuate. It was not fun, since I was extremely pregnant. We ended up driving 6 hours away to my great aunts house. We ended up staying there for 2 weeks till we could get back to our house. The second hurricane wasn't so bad, we had about 4 feet of water but thankfully our house is on 5 feet of stilts so it didn't flood in our house.



It's been nice having someone to talk to who can sympathize on how it is to have a disability and raise a child. It's hard for some people to understand that I may need a day to rest because Im in so much pain. Well I have to go and get some lunch. Take care.

Nicola - posted on 02/03/2009

Hi ya, hope you and your little one are doing ok today?

Yeah I can imagine the radiation would do a lot of damage but as you say at least your alive and you got to meet your wonderful husband and have your beautiful little girl! There is always a bright side I find, don't you? (well we have to try look on the bright side)

No Daisy wasn't the quickest at walking, she learnt to crawl 4 days after her 1st birthday then was walking towards the end of november last year, she is very smart though & picks other things up very quickly, sometimes we are surprised at the things she can do as she is so young, bless her!

We don't follow the US news but it is on british news about your economy but to be honest ours is just as bad if not worse, we are in a recession at the moment and employment is at it's worst for a long time. My brother is kinda in that situation at the moment as one of the worst hit areas for jobs is in the construction industry and he is a carpenter so having to find what ever work he can! We saw about hurricane katrina on the news over here, that was so terrible, I expect it will take a long time to rebuild everything won't it. How's it all going? Do actually live in same place where it all happened?

We don't tend to get many hurricanes or anything else like that over here thank god, they are saying climate change won't help those situations though. That is very warm but i think that's alot better than being in pain in cold weather! We went to corfu couple of years ago & Dominican Republic last year on our honeymoon & I hardly had to take tablets just had my patch & odd tablet!!

London is amazing place so much to do, did you get to see many of the sights? Where did your sister study? Bath is amazing too, did you see the roman baths and spa's? I had to go there to hospital for 2 weeks intensive physio right in the city centre. I am supposed to go back for a pain management course but when they wanted me to go I was heavily pregnant and lost a lot of my mobility again so wasn't the right time, then when I do go, I have to stay there for 3 wks without my little girl or husband, it's about 5 hrs away from where we live and can't bring myself to do it yet!

Your very lucky to go to Ireland too, that's somewhere i would love to go, my husband has a lot of family over there, it's supposed to be very beautiful but as you said it does rain a lot so you were very lucky not to have rain!!!!

We live in a small village called Needingworth in cambridgeshire, we only moved here on the 28th dec, we lived about 4 miles down the road before that but had damp & mould in our bungalow so had to move as it was making me a lot worse and was no good for Daisy either but I have lived in the area where we live most of my life.

My husband lived in place called Luton which is very big town but he much prefers where we live now, it's in the fens so lots of countryside but not too far from the main shopping places & only a mile away from a small town called St I ves.

Well hope you hear from you soon, It's been very nice chatting to you, take care & talk soon x

Amber - posted on 02/02/2009

Hello again. Yea the tumor aound my spine caused my kyphoscoliosis. All the radiation caused my bones to grow in crooked. I also am missing a few teeth because of the radiation, though I have fake teeth in their place. Radiation does a lot of damage to a child but in the long run you're alive so it is worth it. Did Daisy learn to walk pretty quick? No, we ended up moving because of a job. I don't know if you follow the United States news, but our economy is pretty bad. Michigan is one of the states that has a high unemployement rate, so my husband and I had to move to another state to find work. We work in Louisiana where they had that huge hurricane; Katrina, that destroyed a lot of homes and businesses. My husband does construction to help rebuild. It is nice weather though in the summer months it gets to 120 degrees. That is very warm.



I've been to England. It is a very beautiful country. I stayed there for about a month with my sister. She was studying in London for about 3 months, since I had nothing better to do, I ended up crashing on her couch for about a month. I didn't get to see much of England though, just London, and Bath. I took a week tour of Ireland. I got to travel all over there and we were so lucky it didn't rain once. I didn't think it snowed in England. Do you live in a small town?



Well I've got to go and get some food. Talk to you soon.

Nicola - posted on 02/02/2009

Hi ya, that's great news about your little girl starting to hold things & starting to sit unaided, I remember Daisy doing that, it's so wonderful to watch them develop in front of you, sounds like she was a bit of a miracle when you were told there was no chance for so long!

My pregnancy was pretty good, I really enjoyed being pregnant as in the feeling the baby move & know that I was carrying this little life but as I got bigger I started to be in a lot more pain because of the extra weight on my legs & hips. Was in a wheelchair towards the end but it was all worth it. The only other thing I had was mild pre eclampsia in the last 2wks so was induced.

Daisy is great thank you, well apart from a bump to head earlier but she is ok, that's the only problem when they start walking they fall over a fair bit and get bumps and scrapes!!! It's horrible.

I'm sorry you have been through all of that Amber, that must  of been terrible to have had cancer and had to have undergone all that treatment as a child (well anytime in life but hopefully you know what I mean)!

Was it the tumour around your spine that caused the Kyphoscoliosis?                                 hope you don't mind me asking.

Did move because of the weather then?

My husband has said about moving abroad to be in the sun because I am in so much pain when its cold and damp but would mean moving a long way away from our families. We live in england, it's been snowing all day, we don't get much snow though so the english aren't prepared for it, everythings goes into chaos over here!! I don't go out if there is snow or ice unless I really have to because I am frightened of falling over!

Sounds nice temp where you live now though, it's good that your husband helps out lots and does what he can and is supportive.

Well I think I have written enough, don't want to bore you, hope to talk to you both soon, take care x

Amber - posted on 02/02/2009

Hello. My little girl is doing great. She's growing so fast. She's learning to hold objects now, she loves her rattle. She's also starting to sit up on her own unassisted. She was 4 weeks premature. The doctors said I would never be able to have children. I had neuroblastoma when I was one. It is a childhood cancer that affected my spine. A tumor wrapped around it. I had severe radiation and chemo treatments and the doctors thought I was infertile. But I was surprised to find I was pregnant as soon as I went off birth control. The doctors then told me I couldn't carry a child because of my back and how tiny I am. I am 4'6. They said the baby wouldn't have any room to grow, but I had no complications. She came 4 weeks early, but other than that she was perfectly healthy. I am so blessed.



Did you guys have a complicated pregnancy? How are your kids doing?



Kyphoscoliosis is a double curve to the spine. Instead of just curving sideways, it also curves outwards, giving me a hunchback look. I've had previous surgeries to correct the sideways curve, which is somewhat better. Back in November I had a surgery to correct the outwards curve which was much more difficult. They were able to correct some so it doesn't look real noticable now, but the pain it left is pretty bad. Also I'm not as flexible anymore because of all the surgeries I've had.



I know what you mean about the weather and winter. I used to dread the winter months, I lived in MIchigan, US most of my life. We usually get snow from November till the end of March and its been below 0 out. My body just locks up, stiffens up and I cannot move around much. It's really horrible. My husband and I moved to Louisiana about a year ago, its all the way to the south so it doesn't get below 45 year round. So that's nice. It's just hard cause both of our families are still up in Michigan.



My husband helps out a lot. I am very lucky. When he gets home at night he takes the baby for the last two hours that she is up. Im so thankful she sleeps through the night. Then when he is home during the weekends he lets me rest if I need it.



Well hope you guys have a wonderful day. Take care and talk to you guys soon.

Nicola - posted on 02/02/2009

Hi christina

How are you doing today?  My little girl is fine ta, she has had a cold but over the worst now! How's your little boy? It's great that  he is going to be 1 soon, it goes so fast doesn't it?! Daisy will be 2 near the end of April!!! She is a little monkey too bless her.

I'm sorry to hear your mum has ME, it's not very nice at all. I am having one of those bad days today so resting, sod the housework for today, LOL. Mind you I seem to have more bad days than good days at the moment, I hate winter! Oh well we just have to get on with it & make the best of what we got I don't we. I think it's the weather, it's snowing quite a bit where I live & has been all day. Have you got snow where you live too?

I hope you are having a good day today & feeling well, it's nice to chat to you both x

Christina - posted on 02/01/2009

Hi Amber and Nicola

I hope you and ur little ones are all well.How are the littles ones doing? My son is gona b 1 in a few weeks and is a little monkey!

We all have good days and bad days and it is hard when those bad days come rounds but when the good days do and ur at ur best it makes u feel good doesn't it and u dont feel quite as useless (wel i dont)

Amber - I know what its like being stuck in the house all day as i was until i moved into a town. I lived in a village with my in-laws and couldn't go anywhere without relying on other people or expensive taxi's. It great to hear that ur uncle is going to be staying with u to help.  Does ur husband helps lots when he's not working?

Nicola - I have mayb some idea of what ur going thro as my mum suffers from M.E. it horrible when u dont know til u get up if its gona b a bad or a good day and always happens that when u need and want it to me a good day its not.U just have to make the most of the good days without tiering urself out.

Nicola - posted on 02/01/2009

Hi amber,

It must be terrible for you having to cope with your little girl while your husband is at work 12hrs a day  and being so far away from your family & only being able to hold her for limited time!

It's horrible being in pain all the time isn't it, i admire you not taking many pain killers, I have a morphine patch which releases 50 micrograms/hr plus another 5 different tablets, it's not very nice taking it all but i wouldn't be much use to anyone if i didn't! I have been on them for a long time now anyway.

I think the mothering instinct's inside us somehow help us to cope with everything, having someone so tiny that's dependant on us.

Before I had Daisy my life consisted of working 16hrs a week and the resting so that i could keep working, I couldn't have any social life & work! When i had daisy my doc said i wouldn't be able to look after my daughter if I kept working (which i already knew) so i was retired on ill health. since having her though i seemed to cope with everything better, whether it's being so busy looking after her i don't think about the pain so much it's just in the background.

I know what you mean about some days being worse than others too, the weather plays a big part in mine though.

I f you don't mind me asking what is kyphoscoliosis? obviously it's something to do with your back, is it a curve in the spine or is there more to it?

Sorry if i'm being nosey, just that i have never heard of it before.

Amber - posted on 02/01/2009

Nicola, I can sympathize with you. I have severe pain too. Though I try not to take anything because the painkillers usually make me sleepy or jittery and I can't focus. I know since I've had my daughter, I try to block everything else out, but some days are worse than others. Being a mother is an amazing job though and I wouldn't change anything.

Nicola - posted on 02/01/2009

Hi my name is nicola and I am new on here so don't know anyone yet!

I have something called Fibromyalgia Syndrome which is very similar to ME, they say it's like having arthritis in muscles instead of the joints. I have a 21mth little girl called Daisy. 

It affects all the muscles so one day could be worse in my legs others my hips etc etc but it is very painful and I am in pain all the time. I am on very strong painkillers! I have found though that since having my daughter I concentrate on her all the time and what she needs so I don't think of the pain so much it's in the back ground.

I can't get on the floor to play with her as i can't get down or back up by my self so that's quite disheartening. I use a walking stick & her pushchair to walk out & about but hate not being able to do things other people take for granted.

I sympatheise with you & can relate to what your saying as my nan as just lost the majority of her sight and even simple things are very difficult, as you say especially when she gets tired, never mind having an 10mth old as well.

Well hope to hear from you soon

Amber - posted on 01/28/2009

I have severe kyphoscoliosis. I've had 11 back surgeries to try to correct the curve. It's not straight but its the best it will be. I have trouble lifting my baby who is 4 months old. I can carry her around only for a limitted time and it is impossible for me to put her in the car.



It's been really hard for me since my husband and I moved away from our family and he works 12 hour days, leaving me to care for our child. Since I can't put her in the car, we rarely leave the house. So now my uncle is coming to stay with me, so I can do tasks like go to the grocery store, and take her to the doctors and such.