MUA It's been a long time.....

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I'm so sorry to hear your news but sending you lots of healing thoughts.Like Celle my eldest son lost his leg above the knee 16years ago he does really well and just gets on with his life.Thinking of you.
 
Wishing you best of luck with the nerve stimulation.
 
Thanks so much for all your kind replies.
I don't think the amputation will ever be an answer for me as I have a 50% chance of getting CRPS in the stump now as well as a huge risk of phantom pain,
It is something that would give me mobility back,I am in a wheelchair for most of the time now.
The Spinal Cord Stimulator will only remove CRPS pain which is mainly nerve pain so I am really hoping that a huge percentage of my pain will be from the CRPS. I do however have Patellar Subluxation now and I have to wear a brace to keep it in place and this causes a lot of pain and the won't be helped by the SCS.

On a brighter my daughter turned 16 this year and my son 14.
Lucia is now at college and she had her prom in the summer and she looked beautiful and made me very proud.


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Natalie.....your daughter is 16 and already in college? My goodness she must be very advanced! Or do the grades work differently in the UK? Over here in America, kids have 4 years of high school normally and then start college at age 17 or 18. I'm so happy she is doing well, though. You have every right to be a proud momma!
 
It's slightly different here they go to high school from 11 to 16 then college from 16 to 18 and then university after that :)


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Ahhhh.....I see. It sounds like a wording difference then. We have Junior High, High School and then college (university, but we don't call it that). Thanks for the education! Is "college" for you an "away" thing where they live at the school?
 
No that's university but we do have one in our town but she's likely to go one that is about an hours drive away from home but she will stay in the halls of residence I think.
College for you guys is normally a huge distance from home isn't it?
She is doing what we call A Levels for the next two years she's studying sciences in hope to become a doctor and fix me!!
My son is hoping to become a director so he is studying drama at High School.



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Hi Natalie, nice to hear your update on your kids. You have every reason to be a proud Mum! Fingers crossed on the stimulator! Please keep us updated!
 
Thanks Jaycey I will do.

I have had a horrible evening/night the pain was so bad at one point I was in hysterics and I never ever show how bad it's hurting in front of the kids but I couldn't control it at all.
The pain started in my shin and continued through my knee into my groin and into my lower spine and it felt like I needed to push it out of my body it was that bad! It too several hours for it to calm down and when it did its left a horrible pain like I have ran a marathon!! Hence why I'm awake at nearly 4am!!


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I can't imagine what you are going through, my pet. But how proud you must be of your children! Aces!

I also noticed that you have been a member here for 4 years and 3 months! How the time flies!
 
I am very very proud and they are what gets me through every single day as well as my amazing husband :)
I know it was 4 years in August since the TKR Jo!! I cannot believe it's been so long it doesn't seem like that at all!!

Hope you are keeping well xx


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Hi @NatalieMeadows

I'm sorry you are still having such a hard time. I do hope they can find something to ease your pain.

Congratulations on raising children who are doing so well, in spite of all your difficulties! :yes!: They're a real tribute to your care.
 
Natalie, I think you hit the jackpot with your husband---not every man will stick it out through sickness and health!! I am so sorry to read about your pain---I became hysterical the first night after my surgery when the pain ball got disconnected and they did not want to give me oral meds because I had the pain ball!! I ended up screaming my head off---and I had three children with natural childbirth!!

I don't mind the pain of childbirth---but senseless pain is truly debilitating. My husband is in constant pain as well. His back fusion did not fuse and he has hardware in his back that moves. Plus, they wanted to do another fusion but his cardiac doc did not think he could survive the surgery. It is hard for him to get up every day---he takes pain meds and has all the horrible side effects of them too.

Somtimes he feels defeated---how can I continue to live like this? and at other times, he fights a good fight. I know that we will have to leave the party early, if we go at all. Plays we often leave at intermission.

I feel for him---I watch him struggle to ski two runs when he used to lead me around. I carry his skis, and everything else these days---he walks with two Nordic poles. I know how hard it is to live like this and you and your family have my deepest sympathy.
 
Hi Hun I fell his pain it's truly horrific there is so many different emotions every day! Like you say one day is down and you give up the next you are fighting for all its worth!

There isn't a day that goes by when you don't wake up with pain and go to sleep ( if you can!) with pain.

My husband is amazing and it sounds like you are too your husband is very lucky to have you. Every day I feel massive guilt about how much he does for me and how little I can do for him and the children I even have a carer now just to take some pressure off him and I hate that too I just want to be a mum and wife to my family,not this feeble woman who at 34 seems closer to 84,not someone they have to watch be in pain every day of their lives,not someone who can't attend parents evenings or plays they are in because I'm in such a bad way. I am very very lucky that they are all so understanding. That is why I fight because believe without them I would have given up a long time ago.


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Of course--and they are a good reason to fight too. I think that I have learned compassion for others through my life with Bob---I am the first person to open a door or to pick up something for another person. I know that Bob does his best---and really that is all that I can ask of him. We married for better or worse in sickness and health. I am here and am going to stay here. sometimes I wish I could do something to help Bob.

I bet your children are awesome---they are probably a little disappointed that their mum is not there---but, they know why and I am sure they understand a person who is not able to do things. They have learned compassion at a much younger age than I and will be better people because of it.

Really Nat---I think love is everything. It sounds trite, but if you love your children and they know it--that is so much more important than going to a soccer game. A person who is loved faces life with confidence---someone is standing behind them ready to help. They find someone else who can share love with them.

I was abused by my mother---and grew up needing attention and praise which I rarely received. I was a shaky mom---my first impulse was to hit--but I did not want to hit my kids too---so, I would run up and down the stairs when I was angry until I could talk to them. When they saw me running the stairs, they would all scatter to their rooms!!! We have lots of family jokes about my stair running life!

But, it makes me tear up to see what great parents they are to their children. I feel so good because I broke the chain of abuse--I did not continue it. And, I have learned to love both my children and my husband. It is much nicer to face the world with a loving family behind you.

They seem to have some good luck with those spinal stimulators---I hope it works for you. Kelly
 
@NatalieMeadows ,

Kelly is right,

Loving your children is the most important thing to them! They will remember that long after they are grown and on their own! They in turn, will be more loving and kind towards others.:)
 
I agree with both of you its just very hard sometimes when there's something you can't attend or take part in because of my disability. But they know how much I love them and if I could I would do anything for them and with them.

Kelly after everything you've been through I think you are an amazing mum [emoji1]


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