An update on Wheels
A few of your who regularly read my blog will be aware of a post I did a while back on Wheels. I have included the link so you can take a read, should you care to, before getting to the nitty gritty of an update.
Seeing as Orble is my own private space to vent I don`t share it with anyone I know. This is my space. Therefore I am unable to put up a picture of Wheels, which I would love to do to share his handsome face with you all. (And yes I don`t really care what anyone says, I refer to my family in a loving way).
I don`t really want to share too many details here about someone whose permission I do not have to talk about so I will just highlight his situation in the hope that it will get people to act on others behalves who are experiencing the same thing.
At the beginning of the year Wheels developed what is known as 'Suicides Disease'. I am still trying to catch up about this disease, but here are a few basics. It`s medical name is Trigeminal neuralgia or TN and it is believed to be one of the most painful diseases known to humankind. It is not normally found in young people, however because of the nature of CMT, it is something which may occur.
Basically the sufferer feels like they have painful electric shocks jolting along their face, jaw and lips, from what I have been told. A strange and painful clicking sensation is felt in the tongue which often means that the patient is unable to talk. A slight touch, a tiny breeze or movement can bring about agonizing pain.People are regularly known to commit suicide because of the pain, hence the derivation of it`s name. Often the only way to cure this is through surgery involving the brain and time spent in ICU and all other terrifying things that I am still yet to catch up on.
Wheels' lives in an all male environment. Let`s face it boys are just not the most helpful when it comes to things like surgery and looking after the ailing... unless it`s them, then they expect the works! Some rather strong medication was administered, which Wheels, in his VERY determined way, decided not to take. He was going to defeat this. He was not going for brain surgery. He was not going to suffer.
And he did so well. For over a month I could have conversations with him. He had no pain and no clicking in his tongue. He was not drained of energy now did he need to go to the Doctors. I spoke to him about our business. I sent him material to get the website up and running. I poured over Immigration websites and asked everyone I could about how to get him here. He sent me plans for our business. He spoke of his own dreams and goals and was getting excited about all the propsects that lay here, waiting for him in Aus.
And then his clicking started again. The pain returned to his face.
We have decided that it is better that he remain in South Africa for the moment. Realistically I cannot support us both and afford his medical bills here as well as try to fund a brand new business, which would see me away for most of the time anyway. The laws have just changed which mean it is that much more difficult for him to move here and will take that much longer for him to be here before he can apply to be a citizen and get any medical assistance.
I feel gutted to say the least. I realise that he is better off where his medical bills can be looked after by Doctors who know him. His step father has agreed to build on a cottage for him at the house and will help him to establish his own business there. I am excited for him that he has this new venture. I just wish I were closer to give him a hug and stroke his head before he goes in for surgery and be there when his drugged eyes flutter open and hold his hand when he gets the good news that he is fixed and will be ok.
All things happen for a reason. He is a VERY practical boy... or man should I say.... and I believe that he will do well for himself. Who knows, maybe in a few years time I will be dragging him from his wheelchair and onto the powdery sand of a Queensland beach and giggle as we fall into the surf and watch our first Aussie sunset together.
PLEASE if you see anything related to CMT or TN give generously for this cause. Without money no research can be done and no cures can be found. Tell people about these diseases - spread the word, because chances are most have not heard about it and will be skeptical or scared if they hear/see of anyone with it.
Just remember you are perfect the way you are... just as long as you lend a helping hand to someone who needs it every now and again!
Here are some websites for more information:
Really Long Link
Really Long Link
http://cmtfoundation.org/
Seeing as Orble is my own private space to vent I don`t share it with anyone I know. This is my space. Therefore I am unable to put up a picture of Wheels, which I would love to do to share his handsome face with you all. (And yes I don`t really care what anyone says, I refer to my family in a loving way).
I don`t really want to share too many details here about someone whose permission I do not have to talk about so I will just highlight his situation in the hope that it will get people to act on others behalves who are experiencing the same thing.
At the beginning of the year Wheels developed what is known as 'Suicides Disease'. I am still trying to catch up about this disease, but here are a few basics. It`s medical name is Trigeminal neuralgia or TN and it is believed to be one of the most painful diseases known to humankind. It is not normally found in young people, however because of the nature of CMT, it is something which may occur.
Basically the sufferer feels like they have painful electric shocks jolting along their face, jaw and lips, from what I have been told. A strange and painful clicking sensation is felt in the tongue which often means that the patient is unable to talk. A slight touch, a tiny breeze or movement can bring about agonizing pain.People are regularly known to commit suicide because of the pain, hence the derivation of it`s name. Often the only way to cure this is through surgery involving the brain and time spent in ICU and all other terrifying things that I am still yet to catch up on.
Wheels' lives in an all male environment. Let`s face it boys are just not the most helpful when it comes to things like surgery and looking after the ailing... unless it`s them, then they expect the works! Some rather strong medication was administered, which Wheels, in his VERY determined way, decided not to take. He was going to defeat this. He was not going for brain surgery. He was not going to suffer.
And he did so well. For over a month I could have conversations with him. He had no pain and no clicking in his tongue. He was not drained of energy now did he need to go to the Doctors. I spoke to him about our business. I sent him material to get the website up and running. I poured over Immigration websites and asked everyone I could about how to get him here. He sent me plans for our business. He spoke of his own dreams and goals and was getting excited about all the propsects that lay here, waiting for him in Aus.
And then his clicking started again. The pain returned to his face.
We have decided that it is better that he remain in South Africa for the moment. Realistically I cannot support us both and afford his medical bills here as well as try to fund a brand new business, which would see me away for most of the time anyway. The laws have just changed which mean it is that much more difficult for him to move here and will take that much longer for him to be here before he can apply to be a citizen and get any medical assistance.
I feel gutted to say the least. I realise that he is better off where his medical bills can be looked after by Doctors who know him. His step father has agreed to build on a cottage for him at the house and will help him to establish his own business there. I am excited for him that he has this new venture. I just wish I were closer to give him a hug and stroke his head before he goes in for surgery and be there when his drugged eyes flutter open and hold his hand when he gets the good news that he is fixed and will be ok.
All things happen for a reason. He is a VERY practical boy... or man should I say.... and I believe that he will do well for himself. Who knows, maybe in a few years time I will be dragging him from his wheelchair and onto the powdery sand of a Queensland beach and giggle as we fall into the surf and watch our first Aussie sunset together.
PLEASE if you see anything related to CMT or TN give generously for this cause. Without money no research can be done and no cures can be found. Tell people about these diseases - spread the word, because chances are most have not heard about it and will be skeptical or scared if they hear/see of anyone with it.
Just remember you are perfect the way you are... just as long as you lend a helping hand to someone who needs it every now and again!
Here are some websites for more information:
Really Long Link
Really Long Link
http://cmtfoundation.org/
Postmodern Critic
Daily Inspirations
Relativity Watch
Padsoc
Thanks for informing us about TN, I'll keep an eye out for it from now on... Hope you're well too, my dear.
Geeky Blog
Love Speaks
Food Slate
Movies and Life
I’m sorry to hear how hard it has been trying to see if Wheels can move here. The pain that he endures is awful. I really don't know much about TN, but it sounds dreadful.
My thoughts are with you,
Tracy
Killer Beats
Ramble On
Hipnotherapy
My thoughts are with you! I know that this is a difficult situation. My heart goes out to Wheels....
Mis
Kalikapsychosis
You tell this story so touchingly. I can feel what you're going through, honey, Im so sorry. *Hug*
But it IS good news he's going to get this venture at home, and a place to start it.
That is one interesting disease. Now I want to know more about it!
And you know men so well!
Australian Traveller
Flashes of memories
Yes I was so sure he was going to be ok, but then one morning he woke up with the spasms in his mouth again so it looks like he may have to have surgery after all.
He is a superbly strong human being and he will get through it like the trooper that he is. He is really upset about not coming to Aus but at the same time looking forward to his new venture. The option is being left open though, who knows maybe in a few years he will be able to move over.
Thanks for your well wishes. This is a terrible disease. The more people who are aware of these things the better. Hopefully it will encrouage more to get involved and help others who suffer with it.
I hope you are well friend.
Ash
Australian Traveller
Flashes of memories
Shouldn`t we all hey? I hope you do!
Ash
Australian Traveller
Flashes of memories
It does, doesn`t it? I`m very excited for young Wheels. This will enable him to have some financial freedom and build up his confidence. Who knows in a few years time it may be the right time for him to be here.
There must be something big in store for him at home that needs his input.
Ash
Australian Traveller
Flashes of memories
Yeah he had finally made the decision to come over and now is unable to. Fate works in very mysterious ways though so I reckon he has a big and bright future ahead and this is the kick start he needs to get there.
Thanks for your thoughts
Ash
Australian Traveller
Flashes of memories
My stomach felt like it fell through my toes when he told me the news. I know it isn`t practical for him to be here right now, he wouldnt be covered by medical aid for a very long time and I just don`t have the resources to take care of something like that.
It seems that right now he has to be where he is but we are still going to be working together to get our little business up and running. Thank goodness for the internet - even though we are on opposite sides of the world we can still manage to get all of this up and running. And if it wasn`t for him I wouldn`t be able to do it.
He certainly is a super star in my eyes.
Ash
Australian Traveller
Flashes of memories
Yes this is something close to my heart. I remember him when he was running around in nappies and his huge blue eyes and crazy giggles. He`s a beautiful person and I don`t like to see or hear of him in pain. He would be such a great subject for a book because he has an amazing story to tell. Maybe one day we will get our heads together and I can help him to tell it!
Read up on this one, it`s an interesting one for sure. A nasty little critter.
As for men - I`ve been with enough of the 'interesting' ones to know a little about them. The smallest sight of blood and they immediately think they will bleed to death within seconds, a slight sniffle and straight into bed... it`s the eyes that crack me up. I`ve watched a few blokes do this - when they think you aren`t looking they are happy as larry, as soon as they see you looking at them the eyes turn to little slits and the groaning and shivering starts. purleeeeze! I feel sorry for my future hubby LOL
Ash
Movies and Life
That's fantastic that you can still go ahead with your business venture. Congratulations on that,
Tracy
Australian Traveller
Flashes of memories
From The Home Front
Enviro Warrior
Dream Herald
Esoteric Bookshop
I am gutted by this news too ... I am so glad that you realise all things happen for a reason and am thinking about all your recent opportunities again?
My eldest has contracted something similar since her last operation in her thighs. It's not always there, but she gets this awfully painful tingling / shooting pains down her right leg. We are on the hunt to find the reason... and a cure ourselves, this may proove to be an interesting trail for us to follow?
I am so sorry for wheels, but he will make it through okay and his business will prosper too... all in good time. The only thing you can do is fly home to be there when he goes for surgery... for me, that would even be worth a loan.
I hope you find a solution and I will stay alert to TM charities and information.
Be well Ash sweetie, all will work out in the end, have faith and give it time.
*Big hug*
Lilla ...
Movies and Life
I'm happy for you both even if it takes a while.
Sending you best wishes,
Tracy
Australian Traveller
Flashes of memories
I was having a look at all the cool gadgets I could buy for the house to help accommodate Wheels and getting well excited
Yup I believe that things happen for a reason. His spirits are high at the moment and he is getting stuck into this new venture of his with his normal steely determination.
I hope you find something to help daughtie. I cannot stand to hear of people in pain - it just isn`t fair is it? Sending her many Angels and lots of hugs xxx
I only wish I could go there to be with him for his surgery. Unfortunately I am prisoner to this land girt by sea for who knows how many bloody months whilst I sponge up facts on WIlliam Bragg and Sir Donald Bradman. Sigh. There must be a reason why I am continually stuck here too - no matter what my efforts to leave are they get dashed.... still searching!
Much love to you all
Ash
Australian Traveller
Flashes of memories
Gotta keep plodding along hey - who knows what Fate has in store for us - often we are so blinded by what we want that we miss the things that we really need.
I hope you are well.
Hugs
Ash