Are there other disabled mom's out there willing to chat,share support ?

Diane - posted on 11/09/2009 ( 56 moms have responded )

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I am looking for other mom's with disabilities who are willing to talk about their disabilities, their children and basically life in general,,,Mostly I am at the point where some feed back, jokes and whatever else you have may help me and who knows I may have some thing of use for you to use, maybe something as simple as a reminder...

I have three babies and a list of medical diagnosis.

I am just figureing out how to use this site even though I have been a member of it for awhile now,still seem to have a long was to go but live and learn I guess.

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Sarah - posted on 05/08/2011

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im a disabled mam and im looking for friends, i started a charity to help other disabled mothers and spd /pgp and other problems sufferers: www.supportpelvicdysfunction.co.uk is a charity that offers one on one help for mums with SPD or PGP. They have just put an official community up on circle of moms. help@supportpelvicdysfunction.co.uk

Hope this helps x

I have spd and im in a wheelchair for life with it, im the founder of this charity so please feel free to trust in my help. All info is on my homepage or the official COMS page.

I send you all my love as SPD is common but not normal in pregnancy and it is a hard condition to deal with as if affects our mobility. keep your chins up and im here if you need any help from the charity.

Diane - posted on 02/16/2010

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Hi Rhonda thanks for writing! it was nice to hear from someone! It's been awhile since I heard from anyone from here... I miss hearing from everyone and hope everyone is still doing ok...I know for me some days (and nights) are better then others,,at the moment mentally I am doing good, my youngest daughter (of my oldest four) has been here since friday,unfortunately we have to return her to her other mom tomorrow. But her being here has lifted everyones mood, including hers.The last night she is here is always the hardest..Physically I am getting worse as we all know happens with these conditions and seems to be the way of our life.My husband tries to keep my spirits up by reminding me summer is almost here and I always do better in the summer (there was not much improvement last summer but remission would be nice :) )
My little ones are (the one visiting this week is 14,her sister is almost 16, the two boys are 19 and 20- till the end of this year) the ones my husband and I have are 3,2, and 1.
Again I hope this finds everyone as well as can be expected.Keep your chins up..Believe in miricles, they do happen..and anytime you want to chat I am here, or on face book...or yahoo at turtlerose04....
Take care all

Ronda - posted on 02/16/2010

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thank you for the reply Diane, it's funny how you mentioned not being on this site for a while, well then i must let you know that i haven't been back on until today because i saw you replied when i looked in my email cause i rarely look at it anymore, too much junk and jokes too deal with so i use facebook to keep touch with others and play games sometimes to relax. take care of you and yours ok.

Diane - posted on 01/08/2010

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Are there still any moms reading this? I have really enjoyed everyones input and you have all helped me greatly.I want to appoligize for not being on in so long and jope everyone had a great Thanksgiving and Christmas (whatever your version of Christmas may be :) ) and are off to a wonderful new year! Things have been really hectic here...My husband has cut his hours back to part time to help me and the kids more,,,some days I wonder if mentally it was really a help for either him or myself,physically it has been a big help. He has for the most part taken over 90 % of the house work, there are some things like putting the laundry away that he refuses to do (but he will load and unload the dish washer,wash and hang and fold the laundry and do floors...he also does not dust or scrub bathroom showers or sinks,but will clean toliets :) ) and he is great with our kids. He even takes the three of them shopping with him...but as great as most things are and knowing how blessed i am things occasion do get stressful and frustrating....take care all and best of luck to you all

Ronda - posted on 11/25/2009

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Hi my name is Ronda, am 46 and I am in a similar boat with many of you, Fibro, CFS, neuropathy, de-genitive-joint-disorder in my wrists along with several other disabling health issues for about 20 years now. This year i also have 2 pinched nerves 1 in each side of my pelvic area, it's just more thing on or in my boat, LOL. I'm a single mom of 3 boys, (oops!) I mean young men, 24,22, and 19 , 20 next month. I just wanted to say hi right now! and that i just had to reply cause this is the first time i have ever seen or found anything like this, and i know how much this can and will help many people. I don't do well on the computer because of some of my physical disabilities as well as learning disabilities and cognitive problems. i would love to help and/or get some but i don't use the computer everyday sometimes not for weeks. but i know how much this site will benefit many of you, so take care, and all pop in sometime, hopefully more and more cause i know it'll help me a lot. Thanks for being you ladies. Going to bed now! but to sleep??? haha goodnight.

Diane - posted on 11/20/2009

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Angela that is what my hopes were in writing this post!! I knew if I felt this way there had to be at least some one else out there who felt the same way, I honestly did not expect the kind of response that I have gotten but I really appreciate all the letters and hope that everyone is able to get something from all these letters and maybe some new friendships will blosom!!
Veronica welcome, it must be a challenge having such an age diffrence in ur sons! I know alot of people tell us (my husband and i) that we were crazy having ours so close together but it wasnt all our doing,someone else had a say in it too! but it seems to be working out well for us and for the kids this way, they seem to be really close becuase of it and their fights are definately fair as they are so close in size ;)
Lisa anytime u want to chat send a message,,,sounds like u could have really used us over the last ten years,,,u did great hanging in there for your sake and the girls..it obviously wasnt easy.
I hope all the rest are doing as well as can be expected with the cold weather moving in and the stress of the holidays creeping in apon us,,remember to take some time to rest,,and i would love to hear how everyones holidays go,,,,Here is another question for everyone, are you all planning on going to the relitives houses for Thanksgiving, make them to come to your place, or have a relitively quiet celebration at home?...Natuarally I have caused world war three with my plans but that seems to be the norm with my mom and my husbands 'step' mom.....One other question for some of you with fibromyalgia,,I know it attacts ur muscles but does it cause sharp pain in ur shin bones or is it something else causing that?
alright well i am off to try to sleep..take care and i look forward to hearing from everyone!!

Veronica - posted on 11/20/2009

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Hi Diane, my name is Veronica. I have Cerebral Palsy, I was born with it. I am 28 and have a 2 year old son and also a 16 year old step son, that I love as if he is my own. Would love to chat some time.

Angela - posted on 11/20/2009

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Diane, thank you for responding. I love the fact that we can keep in contact with people who understand our problems, because some of theirs are the same. I like the fact that you are reaching out. I hope that we can keep in contact and up-lift one another.
Angela

Lisa - posted on 11/19/2009

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Hello everyone. I'm a 41-year old mother of soon to be 19 year-old twin daughters in college. I'm empty nesting. I have been disabled for over 10 years. I have several conditions; fibromyalgia, chronic fatigue syndrome, depression, mania, genetic spastic neuroplagia (a rare neurological disease, which is progressive and there is no cure for). I spend most of my time in bed due to severe fatigue and pain. I am on several medications for pain and muscle spasms. Raising my girls has been a challenge and I'm sad to say my husband was not very supportive. Even though I am married, I feel like I have been a single parent. My daughters have health issues as well, but have done very well in school and I am very proud of them. My husband had the nerve to tell them that he wasn't going to sign anything to help them out financially for college, even though they graduated in the top of their class. When I took the parent loan out in my name, my husband said, "Now if you die, it will be taken care of". He said this in front of the girls. If I could support myself and the girls, I would not be with my husband, but I only have my disability and medicare. I need his insurance. I am on so many medications and medicare doesn't cover any of them. My husband has been verbally and emotionally abusive during my entire marriage and I tried to leave when the girls were little, before I got sick, but the lawyer said I couldn't afford it. So I went to college and got a good job and started saving up money and then got sick. My friends and family weren't there for me when I got sick. I have one friend, who has a neurological disease as well, and my grandma that is 81 yrs. old.

Diane - posted on 11/18/2009

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Hey everyone sorry it has been so long since I have been on, I didn't forget you, things have been really rough here since last Thursday...I hope to be back on here more tomorrow to catch up with everyone, you are all a big help, just being able to read your letters is a big encouragement every day! I know most of this weeks problems have been my own doing as I got some good news (and some bad) from my dr thurs (the good news is my upper body has improved some, the bad is my lower is going down hill rather quickly right now) and have been over doing it all weekend...But the kids got extra play time with Mama in, the animals all have clean bedding and extra food/water, the house is a little cleaner,,,now just to find a way to fix our freezer, inexpensively and we would be good to go...,The dr did highly recommend two things for this Christmas though a heater of some sort for the bed and a teeter hangup,,,needless to say neither is cheap but he does say they do help with those with back pain...

Any of you that use yahoo and want to add me to your yahoo on ur request please mention that u r from this site,,,my address is turtlerose04@yahoo.com i chat there more often as it is easiest for me...

Atinuke..thanks for the letter but we are talking more about the mom's with disablities then the child and I agree neither us mom's with the disablities nor children with disabilites are all that diffrent from "normal" people however I disagree with you about drugs being the answer...expecially with children I think people are too quick to drug children and it leads to more problems,,,that is my personal opinion, from personal experiences,,,

Alison I would love to read your book,,,maybe I can write one,,if I can stay awake long enough when I am not taken care of the kids and we could swap books,,they should be close enough with the advice that seems you wont take your own advice maybe you would take mine ;) Thanks for all your letters, they are a big help.

Rose sometimes it isnt the pain that is the problem, it is the numbness and lack of control of my legs that is my biggest problem,,,the pain I have come to see as a royal annoyance more then anything, but also have come to see some comfort,at least when the pain is there I know I still have control of that body part, if you know what I mean, I know it sounds kinda stupid but it makes it easier to deal with in the long run...

Angela, I am not always postive but I do try my best to be, I know my body is falling apart but I also know it is a small price to pay for ALL the blessings I have in my life...my husband and three kids (i have 4 others-long story) that make it all worth it...

Linda I wonder where you get your energy!! I couldnt imagine keeping up with all that even before...How old are your children? Have you thought about asking them how they felt, getting them to explain their feelings and fears may help both them and you become closer as it would give you a better chance to understand their point of view and answer any questions they may still have...

Hey Shari use away!! sounds like u could use a friend even more then the rest of us!! glad we can be here for u...I am thankful in some ways that my husband is no longer in the service if i was still "healthy' i think i could deal with it better, but i know there is no way i could raise our children completely on my own as u r anymore, mostly because of the shopping and such,,,maybe if we had drs that did house calls and stores that delivered ;) anyways feel free to write anytime,,,it doesnt normally take me this long to write back...o and pur little guys are just about the same age!!

Hi Michelle, thank you...

well this is acting up so i am going to close for now and try again tomorrow,,thanks for all the letters,please keep writing1 god bless
Sorry

Atinuke Eunice - posted on 11/18/2009

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I do not see a disable child different from other children, there is no big deal about them once drugs are properly administered.

Angela - posted on 11/16/2009

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Diane, I want to thank you for all that you go through everyday. You are so positive. I would love to chat more with you. I can always use a smile or prayer.
Angela Bernard

Rose - posted on 11/16/2009

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Quoting Diane:

Are there other disabled mom's out there willing to chat,share support ?

I am looking for other mom's with disabilities who are willing to talk about their disabilities, their children and basically life in general,,,Mostly I am at the point where some feed back, jokes and whatever else you have may help me and who knows I may have some thing of use for you to use, maybe something as simple as a reminder...
I have three babies and a list of medical diagnosis.
I am just figureing out how to use this site even though I have been a member of it for awhile now,still seem to have a long was to go but live and learn I guess.



Diane, My name is Rose I am also a mom with disabilites. A list of them as you put it. My name on face book is Rose Arrigo Adair if you would like to become friends and chat. I can always use some jokes and support. I am will to give you some to. Get in touch it wouls be nice to know there is someone else out there like me. Thanks and hope to hear from you soon Rose

Angela - posted on 11/15/2009

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Diane, I understand. I've been disabled since before my son was born. I injured my back. had a failed back surgery. It was never easy, but so worth it. My son is now 10 and I forget all the pain I had to endure. So, just hang in there and God will do the rest.
Angela Bernard.

Diane - posted on 11/12/2009

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Hi everyone, just stopping in to catch up, unfortunately that only gives me time now to read everything,,,its been along day then my computer decided to play its own game...
Thanks for all the letters, I hope the encorage all of you and remind each of you how special each one of you are, as I read this letters I can feel the love that each one of you have for your families!
Earlier today I was thinking you know we may have more then our share of challenges but our kids are really going to be that much better people for it, I know that sounds kinda mean but if you think of it, it really isn't..They will always know what unconditional love is, the know the true meaning of love (in any meaning of the word), the have a real understanding of life,feelings,caring,wanting and needing to help others ( to the point where they dont go out of there way to hurt others the way some people do)..The just seem to have a better understanding of life, love,respect,and people over all because we raise them with it and are more aware of all these things then some people are becuase these things are so important to us.
Remember you arevery loved and you have all touched someone elses lives today! Thank you.
Take care!
Hope to catch up with you all soon!

Linda - posted on 11/12/2009

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hi yes I have alot of things going on Ive been on oxygen most of my kids life I only have 1 lung and a few other fun things with this birth defect all my life yet I have 4 great kids and work and teach and run a childrens department at my church and a food pantry but I look different from all the other mommys sometimes I wonder how my kids feel.

Shari - posted on 11/12/2009

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I have an autoimmune disease called Behcet's and a myriad of other issues associated with it and chronic pain. I had my son while I was dealing with chronic back pain, so it was a difficult pregnancy. He is 22 months old now and we are chugging along. I'm also a military wife whose spouse is deployed several times a year so I'm a single parent much of the year. So, yeah, I use friends, community resources, and all the help I can get. LOL

Michelle - posted on 11/12/2009

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You can do it! And you ARE doing it. :0) The first step is acceptance and the next is coping. With amazing people such as our husbands we see that little light at the end of this tunnel. Its important too that you educate yourself and those you choose to surround yourself with. Some may never understand. Its a society thing I believe. If the majority cant see it, touch it etc..then its doesnt exist. At that point really, all you can do is allow for ignorance and move on. All my kids are in (or coming into) their teens. They have all learnt about my illness and are extremley helpful. Kids are great that way. Much more accepting than adults. I have FM and so I can understand your daily stuggle. Keep it up. Dont give up! :0)

Michelle - posted on 11/12/2009

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Quoting Melissa:

Wow, I had no idea there were so many of us out there.

My story all begins with pregnancy 6yrs ago (DD is 5yr)... The first week of my pregnancy my pelvis started spreading, which was not painful in the beginning but it continued to get worse. I was told the pain would get better and the ligaments would tighten up again when the relaxin hormone cleared my body, but it didn't.

I have been misdiagnosed many times and even had a surgery for something I didn't have. According to research out of Sweden, my condition, Pelvic Girdle Pain http://prolotherapy.com/index.htm, and they have helped stabilize the joints in my body though tightening the ligaments and tendons. It has helped me some, but I know women who have been cured by prolo.

I still suffer a great deal of pain and I have good days and bad ones too. If this pelvic pains wasn’t enough, I also developed endometriosis after my pregnancy.

So yes, I am a mess too. I am learning to live with it, accept help and even ask for it at times :+) My husband is a saint. He helps out a lot! I have a house cleaner who comes every 3 weeks to do the major cleaning ($70). My child has always been in some type of full-time care so that I can rest and be a good mom when I pick her up until she goes to bed. I try to see the good in everyday, even when the chips are down. It is hard! But, I know many of you also suffer from pain too and have disabilities… If you can do it, I can too!


 

Alison - posted on 11/12/2009

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Hi Ladies,
I'm on a lunch break and thought I would add a few more comments. Diane I'm sorry you're having a tough couple of days. It must be in the air. It seems just when I think i'm at peace with the world i have another fibro flare-up. But the amazing thing is I realize there is always someone who has it worse and has even greater challenges. I am continually praying for a grateful heart and I too try to focus on the positive. I keep saying this fibro/manic depression will not consume me. But I also realize there are days when the frustration gets the better of me, I feel sorry for myself and ask why? But the one thing fibro has done has been to slow me down I have had to stop and just sit and watch a movie with the boys instead of going for a bike ride. I pray they will remember those cuddle moments and not the ones when I was losing my temper. Try writing your feelings down. This summer I wrote my story and included some helpful tips for moms trying to juggle it all. I guess I'll have to wait to publish it until I recover from my burnout. Ha! Ha! I guess I didn't take enough of my own advice. But the purpose of the book was to explain to my boys why my legs didn't work, why I was tired /grumpy. But most of all I wrote the book to explain to them that despite all my boo-boos, I loved them more than life itself and tried to be the best mom I could be. Writing the book was cathartic and healing and letting it all out has been good. Give it a try if you can.

[deleted account]

Wow, I had no idea there were so many of us out there.

My story all begins with pregnancy 6yrs ago (DD is 5yr)... The first week of my pregnancy my pelvis started spreading, which was not painful in the beginning but it continued to get worse. I was told the pain would get better and the ligaments would tighten up again when the relaxin hormone cleared my body, but it didn't.

I have been misdiagnosed many times and even had a surgery for something I didn't have. According to research out of Sweden, my condition, Pelvic Girdle Pain http://en.wikipedia.org/wiki/Pelvic_gird..., causes a lot of pain with onset from pregnancy. I suffer from pain in my pelvis. However, it is most common for women to have lower back pain and pain throughout the body similar to fibromyalgia (connective muscle tissue pain) with this condition. Mayo clinic said that my condition is something I was born with because I am hyper-mobile (loose joints). Loose joints can cause arthritis and many other joint problems including TMJ (which I have had for years).

There is no cure for this condition, but I have gone though injections called Prolotherapy http://prolotherapy.com/index.htm, and they have helped stabilize the joints in my body though tightening the ligaments and tendons. It has helped me some, but I know women who have been cured by prolo.

I still suffer a great deal of pain and I have good days and bad ones too. If this pelvic pains wasn’t enough, I also developed endometriosis after my pregnancy.

So yes, I am a mess too. I am learning to live with it, accept help and even ask for it at times :+) My husband is a saint. He helps out a lot! I have a house cleaner who comes every 3 weeks to do the major cleaning ($70). My child has always been in some type of full-time care so that I can rest and be a good mom when I pick her up until she goes to bed. I try to see the good in everyday, even when the chips are down. It is hard! But, I know many of you also suffer from pain too and have disabilities… If you can do it, I can too!

Michelle - posted on 11/12/2009

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I'll reply to that one. Nice to meet you Diane, my name is Michelle. My friends call me Chelle. I am a mom with disabilities. I have Fybromyalgia. Its a form of arthritis, but it centres in on the muscles not joints and bones. I have been coping for many years and feel I am in a good place now mentally. Its a process.With the right support its easier to live with day by day..minute by minute. I have 4 kids. 3 boys and a girl.
I have been a member here as well for some time now and also. If you have any questions..or just wanna chat..look me up.
Take care
Chelle

Melanie - posted on 11/12/2009

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I have a disability I need a new shoulder replacement (am only 31 so won't get it till I am bout 60). My son also has a list of medical problems and yes it is hard some days. Other days I just look at my kids and keep going on even if I may not want to. I find looking after a disabled child challenging but I guess that's the fun in parenting only this time round there's no handbook. Every parent is different. I've had about 3 operations so far and am awaiting my 4th. Trying to fit it in around my son (hard work, every time i schedule it he ends up back in hospital). I think you should be proud of any accomplishments not heartbroken. I couldn't pick up my son for a cuddle for nearly 8 months and i felt so bad i was constantly upset over it. Life is like a rollercoaster, full of ups and downs. Life is not meant to be easy. Whatever doesn't kill you always makes you stronger xx

Kristin - posted on 11/12/2009

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Hi! I am a mom with a medical disability. It's sooo hard somedays, especially if you have external annoyances like ex-wives or ex-husbands doing things differently with the children. How old are your kids?

Melissa - posted on 11/12/2009

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I am a 33 yr old mother of 3 teenage girls. I had some minor health issues up until about 2 1/2 yrs ago. in march 07 my car was struck by another car at approximately 90 mph. I spent a few months in a wheelchair and had to have bone grafts and plates in both of my lower legs just above the ankle. In addition, I had a very severe concussion which has left me with empty spots in my memory both before and after the car wreck.
It is truly amazing what children are willing to do to help out around the house and in general when they know you really need their help. If you tell them they need to learn it for their benefit, they HATE the idea. If you tell them they need to do it because you can't its totally different.
Things are still difficult for us on a day to day basis because I am a single mom and I have a memory like a sieve because of my brain injury, but we are getting by and my eldest daughter is getting ready to graduate HS in the spring with an extraordinary GPA.
Be thankful for what you can do. Be thankful for what you have. Most of all, be thankful that your kids will never be as heartbroken that you can't, go out and run in the lawn with them, as you are.

Heathr - posted on 11/12/2009

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Well I don't have disabilities, but I am a mom myself, my son will be 4 in february, I have a brother who has a learning disability, and I am recovering from having anxiety depression for 20 yrs. I finally found something that works and helps and am sharing info with others who don't want to medicate the problem but fix it! Anyhow, my name is Heather and I would love to chat with you as often as I can!!

Lisa - posted on 11/12/2009

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What wonderful, Godly timiing for me to read your post and the replies to it. I have attention deficit disorder (ADD), Rheumatoid Arthritis (RA), Visual Processing Disorder (VPD), Auditory Processing Disorder (APD), Obsessive Compulsive Disorder tendencies (OCD), and Acronyms Overusage Disorder (AOP). I have been separated from my husband for four months now. The RA has been giving me the most trouble lately. During the day, when my kids are off at school, the pain, fatigue and depression have been really kicking in. I get so irritated with myself for taking naps, because I have so many things to accomplish, but my body truly won't give me a choice. I've always had a hard time keeping our house clean (which is the biggest issue for my husband) even though in the past I have spent hours cleaning it. I have too much stuff, and it's impossible to bring order to clutter. I'm trying to get rid of stuff, and I'm succeeding somewhat. But now I've hit a point where the fatigue, arthritis pain, depression, anxiety, anger and guilt have all rolled up into one big ball of yarn, and I can't even catch the ball in order to start unraveling it. Both of my boys, ages 6 and 10, have extreme ADHD, and my oldest has OCD and possible bipolar. For my oldest (I'll name him Zack) the OCD comes in the form of reassurance seeking. He has a fear of death and mortality, and when his OCD is more active it shows up in the form of reassurance seeking. He might ask questions like "Mom, I just touched rusty metal. Am I going to die?" over and over again in one day. My youngest, (I'll name him Charlie) who is very sweet but has a hot temper, will start SCREAMING at Zack to stop repeating himself, and then for awhile it will be a combo. of repeating and screaming. The sound reminds me of a scratchy sounding radio station that isn't tuned in correctly, because two stations are trying to come in at the same time. It's the absolute worst while driving, because I can't separate them. For both boys their hyperactivity combined with my fatigue can make single parenting a real challenge, to say the least. I've been trying for years to teach them organizational skills, but it's so hard to do that when I have such a problem in that area myself (kind of like that old saying of "the blind leading the blind.)
I would love to talk with anyone out there. One thing that i have learned while weeding through all of life's challenges is to do something, whatever makes you truly happy, each day. The past few days, which have been some of the hardest, I started by watching an episode or two of "the Mary Tyler Moore Show" on DVD first thing in the morning. Then I'd start my daily tasks. Once I started feeling stuck again, I scrapbooked one page (something that I never used to let myself do at home because I always had "too much to do.") Doing a scrapbook page gave me tons of more energy, and then i'd be able to move on to more daily tasks. When I was stuck again, I did some writing. I still ended up taking a nap, and I still felt generally depressed, but I know that it was better than if I had not done the things that bring me joy.

Ginny - posted on 11/12/2009

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Hello Diane
I'm a mother of four and I have diabetes, diabetic neuropathy....my father had MS, and my mother had Cancer.....If I can help I will I am a great listner.
Ginny

Joanne - posted on 11/12/2009

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Hi Diane,
There are so many things that try to take us down, it really gets hard to keep a smile on our face! I always try to think of at least two positive things each day. Sometimes even two is hard to accomplish. I have multiple problems, and it seems that rest is the key, even though kids don't always let us get in those naps. Diagnosis can be extremely frustrating. I recently went to the East Coast for testing, without much in the way of results. I am having a surgery next week, and will wait about 3 weeks to have a biopsy. I have two children, age 17 and 19, and two grandchildren, ages 1 and 2. My 17 year old son has MD and is working hard to not lose any more muscle than he already has.

I admire you for keeping up with your children. That alone for a healthy person can be difficult, so you should be proud of yourself.

My name is Joanne and I live in Alaska. Take care everyone.

Lisa - posted on 11/12/2009

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My thoughts and prayers are with you Pauly. i understand where you coming from due to personnal experience. When i was diagnosed i had just had my son so the hormones where already all over the place. I had a long talk with my husband and asked him to leave as i thought that that was the right thing to do, the not knowing what my future held for me, Thankfully he told me to stop being so stupid and that he wouldn't do that. We had only been married 2 years at that point and here we are now 13years married and have 2 great kids. There are still difficult times and i suffer from depression at times, hence i take tablets which help a great deal.
I'm sorry to hear about your car accident too, its hard enough with one being unable to do certain things so it must be so frustrating when you are unable to help at times.
I cannot thank my husband enough for all he does for me and my kids but what i find hard is the independance i feel i have lost.
Something that helped me was a friend of mine's husband as he is in a wheelchair due to a bike accident, so in a way he knows what its like to have been able bodied once. we have had many a chat and cried lots of tears but in some way that helped. Having a close knit framework ie friends and family really does help, and remember we are not alone. Take care

Pauly - posted on 11/12/2009

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My Heart and my prayers go out to all of you! My husband, was diagnosed with MS 4 years ago(Relapsing Remitting). It has been a very challenging road for all of us we have to young children ages 8 & 12 and it has been very hard on them to. What has made things worse is that I was in a car accident a year ago and now have 3 herniations in my L5, L6, & L7 as well as 2 pinched nerves on both sides of my neck. What is so frustrating is that I am his care giver, but now I am limited as to what I can do for him. When he falls my 12 year old son has to help me to get him up because, I don't have enough strength in my arms to pick him! I own my own business as well as go to school full-time, plus take care of both of our children. Sometimes, I don't know if I am coming or going! I being faced with a hard choice right now concerning my husband and I feel as if I am being torn apart! I have been asking God everyday to give me the strength that and the wisdom that I need to make the right choices!
We have all bee to therapy including my husband because, the depression and the anger that come from being disabled is affecting us all. This whole situation has turned him into a totally different person. Sometimes I don't even know who he is, even though I still see glimpses of the man he used to be. Right now I am tying to take thing just one day at a time, because God help me if I don't I feel as if I may break apart!

Lisa - posted on 11/12/2009

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Hi there, i was interested in reading your post as i too have MS i have been a sufferer for 11years now. I have 2 children, A Boy who is 11 and a Girl who is 9 in 2weeks.

It would be good to hear back from you, my E-mail is, safinduxford@hotmail.com
Take care

Diane - posted on 11/11/2009

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Hi Danielle, welcome,,,yes we try to make the most of it but it is no secret to how hard it is...I know how scary it is having seizures with little ones...Sounds like you have your hands full...there are a few of us that come in here and chat hopefully we can be of some help to you,,if nothing else be an extra set of ears for you! take care

Diane - posted on 11/11/2009

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Hi all, it has been a really tough day, not sure why or if there really is a reason other then we just have some days that are worse then others...Tomorrow afternoon I go for manipulations to have my entire body realigned. the scary thing is it is getting to the point where they are no longer helping much from my lower back down...Sorry about the book I wrote earlier,kinda got lost in thought and was having a good time with my little ones in here playing around me while I wrote..They are such a joy to watch! The youngest will be 11 months tomorrow and is starting to walk by herself!
I am thankful that I have such a wonderful and supportive family. I know how lucky I am that my husband is willing to do all the housework that I do not get to, he has his share of health issues also.We did alot of talking when we first got together and knew there would be alot of challenges ahead of us.
According to my Dr we suffer from a visious cycle of pain/guilt/depression/and other things the worst the pain gets the more depressed we get the less we can do, sometimes it is almost impossible to break the circle even a tiny bit,but that depression goes along with most all your chronic ailments...
I understand what you are saying Ali my husband is always after me about over doing it because I dont realize I have done that much till the pain kicks in and I cant more,,or the numbness which is kinda worse...I dont mean to be like that, I see stuff that needs to get done and do it...My younger brother was one of the people who thought I was exagerating about my conditions until he saw me have a seizure two minutes before we were suppose to get into his vehicle to take him to work (I was suppose to drive) needless to say he was late to work, but he has never doubted my compaints since then.
My mom is still around but we have a rather touchy or moody relationship. Kinda hard to explain. I accept her help when she offers but that is about as far as it goes, my kids try to call and we try to keep the kids in touch with her and my step dad but sometimes I really have to wonder if it is worth it. I love her and I know she loves me, but I also know she has her share of issues she needs to finish working through too.
As sad as it sounds it made me feel a little better when I realized that some of my moodiness was from my pain and medical problems and not just that i was a bad mother, it gave me a chance to talk with my husband and my dr and between the three of us have been ableto work out some things that have been helping so that I can enjoy the kids more and still be of some help with the housework, and bills and not feel so useless...its a long road but remember to always keep the line of comunication open!!!
The TMJ,,,I didnt think they had a name for that,,when I complain of that my dr says its all normal..and lets it go at that..

Tina,,sounds like your stepdaughter is really trying to understand everything that is going on and wants to show you how much she loves you just remember to give her an extra hug sometimes throughout the day :) Listening to what you wrote about everything it sounds like the neuropathy. I am surprised they havent checked you for that,,please keep me posted.
Jeannette isnt aneurysm the swollen blood vessels in your brain? did they do anything for yours? I am asking because over the past few years they have found some in me (last test showed 3) but they are refusing to do anything about them. one dr said they could do surgery but where the two were located they were better off being left alone...
Hey everyone, if at anytime you think I am being too noisy just say so please...if you want to answer any of my questions privately feel free to do so, I am also on facebook and yahoo (turtlerose04) or u can message me on here too...
By the way I live up north in Maine
Have a good night everyone....

Jeannette - posted on 11/11/2009

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Oh Danielle. I am sorry. I've learned through my own marriage that a disability will either break or bless a person or their family. For me, it was just one of the things that my (now, ex) husband did not know how to deal with. I think I had it easy compared to him! There are times of frustration, anger, deep sadness and great joy. I am here for you if you need to talk--or scream in frustration.

[deleted account]

Hi my name is Danielle Im 34 and I have 4 kids ( 2 are babies 12months old and 2 months old ) and I have r.s.d and i also have seizures that are out of control. Its kinda putting stress on my family life but you make the best of it right . Well it nice to see that there are others trying to make the best of it too.

Jeannette - posted on 11/11/2009

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Well, what can I say after all that?! I had a brain aneurysm when I was 28. I am 46 now. My ex husband and I have 3 children, ages 22, 19, 14. I would be glad to talk to you anytime. I am on Facebook too.I guess this doesn't automatically put our names, so mine is Jeannette Shields. I live in Vermont. I like trying new things-new as in, I didn't know how before the aneurysm or new as in I don't remember how. I don't know what else to say, but just know-you are never alone. God cares a great deal about you.I am glad you wrote. Thank you!

Doris - posted on 11/11/2009

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Hello Jennifer Carter, I am much older than you but I had left knee orthroscopic surgery but it didn't really help and ended up having the left knee replacemet in 996 from a torn miniscus. That went okay for awhile. Then in 2005 I tore my right knee miniscus and decided to go directly to the knee relacement. That worked much better. The recovery is the toughest part Rehab to get the muscles stronger and he knee joints working stronger also. It has been 4 years now and it is doing great. I got a lot of help from my church family. They brought over meals, did shopping for me . The best thing at first is resting and keeping the injured leg elevated and Ice it Ice it and Ice it. Very important to keep the swelling down. I hope your children are helplfu to you. Even little things like getting you a glass of water or something to eat, ect. I will be praying for you. I hope you MS will be helped by your being able to rest. My name is Doris Dawson-Smith. I live in Oceanside, CA. You can respond to my anytime. I'm on Facebook. God bless you.

Alison - posted on 11/11/2009

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Oops
I forgot to tell you what TMJ stands for (Tembromandibular Joint Dysfunction). In other words terrible face, head and neck pain.

Alison - posted on 11/11/2009

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Dear Diane
I know how you feel since my diagnosis with Manic Depression (confirmed six weeks ago -but I believe I have suffered with it since I was sixteen). I have had no choice but to look to my husband for help-I appreciate it but at the same time I have tremendous guilt. It took a long time for me to come to grips with the fibro diagnosis and I know the pain of feeling misunderstood and the "you're just faking" mentality. I remember those early days when I could barely walk and I had two toddlers running around. Somehow God got me through it.But with this additional diagnosis I feel ill-equipped to be a mom and wife. My mom was very sick from the time I was four and died when I was twenty-two. I know how much it affected me, my siblings and my father. I wanted more for my family. I wanted to be that super mom that would do it all and have a smile on her face while doing it. I couldn't understand how I could love my family and yet be so irritable at the same time. I realize now part of it was the pain, the fatigue and the mania. I too had OCD tendencies and somehow equated the clealiness of my home with my mothering ability. I didn't pace myself, I over did it to the point of physical and emotional exhaustion and now my family is paying the price. I can't seem to keep it together for more than 4 or 5 hours. I used to be able to care for them all the time and now my husband is cleaning the kitchen floor, doing my laundry and nurturing our children. I am grateful for his help but I should have asked for it a long time ago instead of trying to do it all by myself.

Diane - posted on 11/11/2009

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Tina I looked for my papers on the test they did but as it was years ago they are packed away and my husband doesnt want me digging through them.sadly I dont think there really was any of much use in the boxes anyways...Basically I was sent to a neuro specialist who hooked me up to machines, one machine measured the amount of pain, then he measured the amount of feeling in my limbs, tested the temp of my limbs, tested the strength. I think the test took about an hour...The muscle relaxers and the seizure meds help me for the neuropathy and the spasms and twitches, which is why I mentioned it to you.I have to take my muscle relaxers reg. at this point though.
Sometimes I feel like I take enough meds to make a full course meal out of them and that food is over rated ;)
I used to be very picky about things being put where they went and everything had to be spotless...Thankfully my husband has helped me over come some of that. though it is still hard for me to deal with. he doesn't understand why I think our house is a mess or why things need to be in there homes when the kids will just be playing with them again later, I can't explain it to him either because I dont know...

Welcome Jennifer...best of luck on ur up coming surgery! will they have to postpone it if your MS relapses?
I look forward to talking with you all more later but I need to log off for a bit...Hope u all have a great day..try to see the good in it,,remember you're very loved! Take care!

Diane - posted on 11/11/2009

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Good Morning everyone! Thank you Ali that was kinda what I was hoping my question would do, not just for me but for other mom's in our situation. ("To give each other hope and support"). as I mentioned earlier I am really lousy with the abrev so would u please tell me what the TMJ is, I will understand if you dont..... I think if we are honest with each other and tell each other what we find works for us and what doesn't is the best advice we can give each other seems there is no books on how to raise our children or deal with our disabilities....I think the advice you gave so far is helpful and I have been trying to use do that since I realized how bad I had gotten after given birth to my youngest, she was an emergency c section and I have gone down hill rather quickly since, but I do not regret having her but we do our best to keep a happy atmospher at home.I was forced to come to the same realization you did about being a perfect mom, in the past two months I have come to see that the house can be a little dirty all the toys do not need to be in there certain toy box as long as I have time to play with my little ones,,,right now as I am writing this one my oldest is pretending to clean up my face :) while I lay in bed supposedly resting while my husband is in the kitchen making speghetti and sauce (which he has mastered and he and the kids will live on for the next three days!). this morning he has already made a hamburger helper, mashed potatoes,toast and kept up with the kids...and yet he wonders why it is hard for me to stay in here,,while he has done all that I have done little to help with the kids,changed the baby twice put her down for her nap,played with the three of them,listened to their stories, did the check book..I really miss the days when I was out there doing all the 'work" (i never used to think of it as work though) and it really frustrates me when I am told I am faking (becuase face it all of us with fibro, its on the inside and we live in a world of people who need to see to believe) being told I am just lazy....something tells me I should really reread this before I send it and I know i didnt write everything I wanted to,,,as i am realizing i am writing a short book here,,but seems Dezariah needs her hat and is still talking trying to reread this isnt going to make a diffrence right now I am going to risk making a fool out of myself and post it now anyways,,,,will be back soon to write more,,,Tina I didnt forget you, I wanted to take a few mins to see if I could find the papers on some of the test they did...Till later take care everyone :)....silly question,where does everyone live (by state or country works)..

Alison - posted on 11/11/2009

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Hello fellow mommies:
My name is Ali and I too suffer with a number of ailments but reading your stories gives me hope and once again proves that a mother will do anything to care for her children. I have been diagnosed with Fibromyalgia, TMJ, and recently Manic Depression. I have two boys 8 and 7 (13 months) apart and am recently separated (hopefully only temporarily till I get my health stabilized). I am working full-time at a job I love and am sharing chilcare responsibilities with my husband.After eight years of mothering I find myself burnt out. I don't know if I am the best person to give advice but I can tell you what I have learned along the way. Firstly, do things that make you smile. I think when you have fibro, chronic pain or fatigue you use up all your limited energy taking care of your family and/or working outside the home. Don't let the "shoulds" and the to-do list rule your world. Take time to mother and nurture yourself. Find a matriarch. My mom passed away before I had children and I never had a mother figure there to cheer me on and encourage me to keep going. Find a mom!!! Don't try to do everything perfectly-just do the best you can. I spent too much time trying to be the perfect mom and often felt like a failure as a result. I realized I was comparing myself to others who did not have similar challenges. I am so glad to have found a circle of moms who are struggling with the same types of issues I am. The other advice I can give is to have faith in something, some higher power. If I hadn't had my faith and prayed during those difficult moments I don't think I would have made it. I hope you all have a wonderful day and would like to know more about you. Please reply.

Jennifer - posted on 11/11/2009

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Hello, my name is Jennifer Carter and I have Multiple Sclerosis. I also have a torn meniscus in my right knee from a fall two years ago. I am having surgery next Thursday to repair the tear. I would love to have someone to talk to. I have three teenagers. 19,17,13 and we also have another daughter that we say is ours. She is 25 and has two children of her own. She lived with us for a while and we claim her.
I have just left my job because my MS has gotten to the point that I was just to tired and had to many relapses to keep working. Hope to talk to you soon.

Tina - posted on 11/10/2009

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Diane- Obsessive compulsive disorder.....I am very afraid of germs especially when the kids are sick....I also need things picked up and it drives my step daughter crazy. As for my jerking it is my entire body at times, sometimes just legs and other times my arms or hands. It is very frustrating. One dr told me it was restless leg and i did medication for two months didn't do a thing. Now I have depression bad so being treated for that and now they started me on some medication for seizures as that is the next thing one dr thinks i have. She is a movement specialist neurologist. I am not sure what the heck it is. I will look into the neuropathy though as I am better when i take muscle relaxers as there are days I have to take two to three during the day. I also have to wake up at night to take it as my jerking gets bad and wakes my husband and I both up. Sounds like you totally understand. What test did they do for your neuropathy?

Diane - posted on 11/10/2009

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Tina I am drawing a blank, would you please tell me what OCD is, I know I know what it is but it isn't coming to mind at the moment,sorry... I agree with you about snuggling being a BIG help,unfortunatley my husband is not much of a snuggler (he has got a condition where if he sits still he falls asleep! the children try to snuggle with me but Samuel is still a little too hyper to last more then a couple seconds). there are times I feel so useless...
(Tina) Is it your entire body that jerks or just your legs? Have they tested you for Neuropathy? I am sure the last thing you want to know is that there is something else wrong with you but I am pretty sure that was the one (I get them all mixed up now,but I know the neuropathy affects your nerves so I am thinking that is the right one) and naturally there is no cure but the muscle relaxers and sometimes PT does help (the pool therapy did help me for awhile but not something I could afford or get to...
My husband works nights so he can at least be in the house if I need him during the day while the kids are most active. The oldest two love to help with 'chores' around the house and taken care of me. they all go with me when I have a dr's appointment so they watch the dr re-align my body now if my oldest sees that I am in more pain then normal she will try to treat me as the dr does! It is kinda sad,frustrating but shows me what a special young lady I am raising...

Tina - posted on 11/10/2009

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Diane - I have to take a nap everyday and most of the time I have to take a muscle relaxer to do it. This is because my body jerks and the doctors don't know why for the past 3 years. It is very frustrating and it does affect my mood and my sleep. My husband has been able to adjust to most of my moods. My step daughter just comes up and hugs me and sometimes I think that is all I need. I need to know that someone loves me even though I am complaining and have OCD. Also, that I don't feel well and still up doing everything as I am the mom and my husband works like 10 hour days and it is tough as I want to go to bed when he gets home but I need snuggle time with him also. I so feel you girls out there...I am here for you all also :) Diane I hope you are getting rest :*)

Diane - posted on 11/10/2009

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Hu Bec and Tina, thanks for joining us. I just popped on for a quick minute but plan on being on later today and hopefully have a chance to chat with some of you..My husband took our three children out to do errands so that I could try to get some extra sleep...,,,I don't know about the rest of you but I think the hardest part to deal with is the lack of energy and over all tiredness. my biggest problem with the pain is it effects my mood, if I am not careful I get too frustrated/angry because of the pain...But there are times lately that no matter how hard I try I can't get my legs to work...I try to see the good in it, remind myself of what works instead of what doesn't...

And everyone that is answering this, I am here for you too, Tina I know what you are going through with your step daughter, my ex came with four children so if you want to talk you know how to reach me too :)



Francessca how do you keep up with everyone and everything? I would love to have that many,,I am one of those people who feels you can never have too many children.



I hope everyone has a great day and I will look for you all soon :)

Tina - posted on 11/10/2009

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Quoting Diane:

Thank you...To keep this from sounding too much like a medical book I will just mention the four worst diagnosis that I have which are...Degenitive Disk Disease, Degenative Nuropathy with Osteoarthritis, Fibromyalgia with Chonic Fatigue Syndrome and Migranes...and I should probably warn you that I can not spell...


Hi Diane,



I have Osteoarthritis, Fibromyalgia with CFS and Migraines.... I so know how hard it can be.  I am new to the board.  I just thougt if you need to talk send me a note.  It is hard and sometimes you just feel like just laying in bed and not moving and not being disturbed.  I have a daughter 10 and she has lived with me this way all of her life and I have a step daughter that is 12 and doesn't understand how I am feeling or what is wrong.  So send me a message if you need to talk or need to vent or need support.  Take Care

REBECCA - posted on 11/09/2009

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hi my name is bec i am a heart patient born with complex congenital heart defect/disease, my little boy is a miracle and we are both lucky to be alive. like you i have a list of medical diognoses. now have a pacemaker hope to chat to you soon take care from braveheart mum bec

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