Dear Joan.

Thanks!!! The problem is that people just don't understand. They listen but they don't hear me because they don't WANT to hear me because they might hear something that they don't want to hear from me. They are scared I'll say something bad or that I might upset their sensibilities or that they will have to admit that things change and that people get worse.

My friends at uni are good and some of my carers are brilliant. It's just that when my mum was 3 her dad developed TB of the spine and was unable to move for 3 years, then a couple of years later her mother broke her spine and was bed bound for nearlly ten and then in a wheelchair before finally managing crutches. My mum cared for granny for years before marrying and having me and my sister. In December my grandmother died of lung cancer and mum had nursed her through the last 10 years, and especially the last year of her life. Now she is doing it with me - I'm not dying, but she is nursing me. At Christmas she had two hoist dependent wheelchair users in the living room in the house and was trying to dress, feed, turn and sort us both out every day. (was funny though with her feeding me and then turning to granny and feeding her.. in an odd way!).

Well.. it's 10. 40pm and my sister works at the local nursing home - and as a special treat I am going to steal their hoist and have a bath... aren't I lucky??! so see you all when I get back!!!

Love ya tons and thankyou all!!

Froggsy xxxxxxxxxxx

Hi Frogga,


I have been watching your story with so much empathy since I joined this site.:hug: I do have many of your symptoms which have been assumed are my CRPS but I am concerned that there has not been a resolution to the problems that have arisen after your fall.:(
As pono said your symptoms are indicative of a brain or spinal cord injury and the nurse in me makes me wonder whether the assumption on behalf of the doctors that this is your CRPS gone crazy has overshadowed the fact that there maybe something else happening that could be rectified.
Of course I don't know what tests and investigations they have done on you and I maybe talking way out of line so please forgive me but to read about all the symptoms you are having now and not say something just doesn't sit well with my profession.
I so hope that something can be found that can be treated and give you your life back to some degree because the way that you are expected to be living at the moment seems so unfair.
Thinking of you
Tayla:hug:

Hey Tayla

The RSD sucks doesn't it!? It is so infuriating! I was worried about SCI's as well - but my "amazing" mother - who specialised in orthopaedics in the army, just got an army nurse to check I was ok (HAHAHA - can you move you feet? no I haven't been able to move them in 5 years, Oh. Ok. You're fine then).

Because of the dystonia everyone just imagines it's that. I know I should go and get it sorted but I'm frustrated with it. I don't know if it's some form of SCI or whether it's just RSD as the symptoms are similar to RSD - just worse!!!

Agh!!! Well, I see my neuro in September so I will probaly go and see him if nothing better comes up.... fingers crossed I will improve because this is driving me nuts and the migraines are pretty horrendous as well! oh well!!!

Much love and jump in any time! thanks so much

Love

Frogga xxxxxxx

Dear Frogga
 

Your fed up--OMG---I don't think fed up is strong enough, but all day I have tried to think how I would feel and there are not words:eek: So I lit a candle for you and prayers are being sent to your whole family, may peace and healing surround you all!!!:grouphug: Carose

Dear Frogga -

Just cannot believe how you keep up your humor and all around wits with everything you've been through of late. You continue to amaze.

I don't suppse it's too much to ask whether anyone at the NHS has been able to order an MRI of your cervical spine, or will that have to wait until you seen the neurologist in September?

You're in all our thoughts, but you knew that already.

much love,
Mike

Frogga,

AWWWW hon, I wish there was something I could do. If I was still in Germany I would hop a flight and pester you some. You should see your doc about it, if you haven't yet. You know...sometimes, as a mom, you get angry because you can't fix your kids. I'm sure she is also feeling guilty. (It's what moms do best lol). It's hard for us to discover that we can't cure all the ills with just a kiss and an ice cream. Just remember, we are your family, friends, and we have the best and biggest ears made just for listening.
Hugs and love
Mary

Hi Frogga,
 

If my Mom were living today she would be like yours. Mom would be waiting on me hand and foot and it would drive her nuts that I wasn't getting well.

When I stayed with her in 94 when she passed away, I had tumors all in me and at the time we didn't know what was going on. I was so sick, I was trying to take care of her and she would laugh and say,"you're worse off then I am." She would try to cook for me at times and it was like the blind leading the blind. We didn't eat much. Bill was busy building our place so he couldn't take care of us in the day time. Mom always referred to the 10 of us as her babies, even after we were grown. We would go to town with them on Saturdays and she would introduce us as her babies. Well us being in our teens that just didn't sat well. Mom came up here to see me when I was to sick to go see her. It was 1200 miles between us. They never stop worrying about us. Being a Mom now, I know what she went through.

She's really a strong woman to take care of you and your Grandparents like she has. You must be very proud of her.

When you say you're frustrated, I know what you mean there when it comes to sorting out what is going on. I have been there so many times. Now I'm going through it again. I get better for awhile then I start dealing with symptoms and trying to figure out what goes to what. Now with the vomiting, I see my Dr. this evening and talk to him about what's next. I'm sure there will be some test to go through. It is very frustrating to know you have several things going on at once. But I know that when you start feeling better you will be able to get it done. You are very strong willed an that will get you through this rough patch.

I hope you start feeling better soon.

Ada

Oh Sweetie,
I wish I could do something for you. I'm a mom. We moms always want everything to turn out right for our children. We just never seem to give up hope on them.
I sooo much want you to get better! Please keep up your good spirits (which I love).
You are in my thoughts and prayers,
Linmarie
:hug: