How'd the bath go?? It is nice to get one after so many bed baths... isn't it?! Woo hoo!

I will email you when I can... nice to talk with you! You are so dear to me... you already knew that, but I wanted to remind you how special you are!! Thanks for taking me under your wing.

You are doing brilliant... you really are! You help me learn to manage to get through all the same things.

Keep on keepin' on! You'll pull through... try not to go nuts with the migraines, pain and dystonia!

Love you tons, Sweetie! xxxxxxxxx

Hi. I'm sorry I'm late to respond. Thanks I'm hanging in there and trying to stay in the moment which is not my strong point. Anyhow as for the mom issue I know it may not change things but still using your voice and saying how you feel. Its not good to keep it bottled. I'm in therapy for myself and have you thought about it? I'm now looking into biofeedback which I did when at the pain program at Cleveland clinic which was so helpful for me. I have such anxiety and found it really helped me calm down. As for friends I can relate. All my friends are running around and I feel left out and behind. They don't understand the mental toll this takes too. I think people forget what even a simple phone call means. Is there something you can do for you to lift your spirtis? I know it doesn't take away from what your going through but any mental lift can make things a little better. Hang in there and if you want an email buddy I'm here.

Hey Carose, you get through it because you have to get through it. There are times when things are really tough and mentally they suck, like at the moment! which is just so frustrating. But I will get through it. I just wish things could be different. I am still so jealous of my normal friends being able to do normal things.

Hope you are doing better

Love ya

froggsy xxxxxxxxxxxxxx

Hey Micheal,

Thanks, you are such a dear!

Come ON!! The NHS won't do an MRI unless I'm in hospital otherwise it's a 2 year wait, even after my grandmother developed lung cancer it was still, STILL a 3 month wait after developing bloody spinal cord compression!! IN HOSPITAL! I have to wait to see this neuro before I can have one... stupid NHS! it drives me nuts...

Are you ok?

Thanks so much. I am just so frustrated and no one will listen to me.

Love

Frogga xxxxx

Thanks Desi, you are great! I do think of this as such a part of my family - one day I hope to meet all or as many of you as possible! It would rock. I just wish things were different. I just want my life to become normal and for things to change. I just want things to go back to how they were - I keep thinking geez I complained when I couldn't walk but had a smll amount of arm movement, but to lose it all... it's just tough! but I suppose life has to go on, I just wish it was different. I especially wish my mum and sisters attitudes would change.

Love ya

Froggsy xxxxxx

Hey Rogue,

How are you keeping? hope you are doing ok? You've been abit quiet?

I think that's what gets me. Mentally I can cope with alot but I can't handle the constant put downs from mum and Charlotte - It infuriates me that if it was the other way round then, being honest, I might resent them a bit but I would understood they need help. I have needed feeding for 2 years now and Char has fed me 3 times, she has stormed off and left me naked if I say anything like that she is hurting me when dressing me, I cried when my did my legs this morning and she stormed off half way through then did them 3 times as hard and is not talking to me because I then spent the rest of the day incandesant with pain and rage. She is also not talking to me over the catheter issue and the wheelchair issue (for another post). AGH! I wish I could make them understand that this is not my choice of life - and they don't live it so they can't understand. I am tempted to move out for the rest of summer. It is so hard living with RSD anyway but they just don't see that there attitude doesn't help. I know mum can't handle me getting worse, but still!!

Love

Frogga xxxxxx

Hey Mary,

How are you doing? If you ever hop over to Germany come and say hi! I think that is one of the biggest problems, mum wants me fixed and blames herself I can't be- she always feels that if she had made me keep walking, keep using crutches, somehow keep feeding myself, worked harder, done more, done more physio, tried more drugs then I would be normal and this would be behind us. But. It's not. Which sucks but is how it is. But she can't accept it. And when she can't the rest of life just... I don't know. I just wish she could understand this. GRRRRR

Love ya

Froggsy

Hey Ada, I don't think I explained very well. Your mum sounds awesome though! Basically my mother is very strict and she does not believe in disability despite everything that has happened. When granny had her spine injury and was bed bound for years mum would carry her downstairs (at the age of 15 or 16), skip school, lay her on a blanket in the garden and then do the gardening under her directions, or build a wall, or repaint the house or do whatever, all with granny lying on a nearby surface somewhere (including at times the kitchen surface, table etc). She doesn't believe in waiting on people and believes if there is anything I can do myself then I should do it. As a quadraplegic there are many things she HAS to do for me but whenever I have been well enough to do stuff she makes me do it, regardless of whether it is faster and less painful for her to do it. We are talking about a woman who doesn't believe in deformities, that will reset my shoulders and knees and hips when they dislocate from the spasms, that nearlly broke my neck trying to break the spasm, that is now planning on strapping me to a spinal board to get me PROPERLY flat. A woman who believed that I could walk even though I was strapped into a frame, held up by her and had someone else kicking my legs forward.

Mum is great and without her I am certain I would be a lot worse, she has done things that drs would never consider doing - like resetting some of my joints, she kept me off an NG tube when everyone said I needed one etc, BUT she is strict as hell about the RSD and NEVER EVER GIVING IN TO ANYTHING.

I am frustrated because all I can move is my eyes.

Worse. When does it calm down? I haven't fed myself in 2 years, I haven't moved my arms in 3 months. I haven't moved my legs in years. When does it calm down so I can get it sorted out?

Love

Frogga xxxxx

Hey LinMarie

How are you? (Love your name by the way). Thanks... I think I am starting to understand that mothers are all built similarly, they all want the best for their kids just they all have different ways of achieving it... Thankyou so much for your love and prayers!!!

Love ya

Froggsy xxxxxx

Hey Ness

I'm so glad your bp etc is up and you are doing better - keep going with the methadone.

I am just so frustrated at the moment and just want my families attitude to change - I am glad it's there, but it is so tough to live in the army 24/7. (Even better both my sister and my mother are partially deaf. Makes life so much easier).

Love ya and will PM you later

Froggsy xxxxxxxx

PS Bath was good..!!!