Dear Miss F. -

The very fact that you can write such a pithy post whilst on 100 mgs. of ketamine/day is incredible. RSD pain or no, most folks would be so far down the K-hole as not to be seen for a while, but you my dear not only post but manage to stay at least somewhat focussed on your exams on Thursday!!!

You are a remarkable, amazing woman. Something I'm sure that has not gone un-noticed within your community.

Oh yeah . . . break a leg.

much love,
Mike

Hey Frogga, hope you are feeling better now. I sure enjoyed talking to you in chat this morning (well, this afternoon for you). We'll have to do that more often

Hope all goes well with your exams, keep us informed... I, at least, get to live vicariously through you, ya know. I haven't had much to do with the outside world for quite a while now, so I really enjoy your "college days" stories.

Hey, here's something for ya. Tell Hunky Dunky that one of your friends in the forums wants to give him a kiss for being such a good friend... but I'm in America, so you'll have to kiss him for me.

You are in my prayers! I hope you have a better day!!!

Frogga -I hope a much better time for you today and forever, you are one amazing young lady!

Hey Mate,

You are so brilliant. I believe you will not go up the mountain in your examines you will go right thru the mountain. Love, Roz xxx

Hi Frogga.
I Hope That You Feel Better Soon. We All Know How Those Bad Days Are. Hang In There.

Sue K.

Thanks everyone so much - you are all awesome! It is great being able to share this with people who understand - I mean, it is really hard to try and explain it to my friends - they have been wonderful but at the same time they really don't understand what it's like!!!

Well. I'm pretty scared, they now think it's an RSD deterioation again which is not good - I'm not sure whether I can handle more of this - especially long term!!! I can't feel anything from my chest down (apart from pain) and have no independent movement from my chest down. It's really difficult to cope with because it feels like my life has been limited down even further. I can't even stay in the bathroom on my own and it's stupid - but it feels such a huge deal. And losing all the other stuff, it was only small stuff like being able to change my position on my own in my wheelchair, or being able to reach forward for something or sideways for something instead of being tied flat into the wheelchair.

It does show me how grateful I should be to my friends - they have all pitched in and are learning the new ways of log rolling, head tying, hoist using and harness adjustments. (I don't have a harness on my wheelchair at the moment, but every time I hit a bump - even in tilt and recline - I go flying out of my wheelchair and my head does the whole exorcist thing and my body bounces around and out of it - so my carer and some of the boys have improvised one which is helping. Also found a good use for my bandannas for tying my head to the head rest! ).

I got dropped twice more we wanted to see if my legs were doing better, so Ben picked me up and I went straight on the floor. So more bruises. Just this time he dropped me under the bed and under my wheelchair. Ooops. Ended up with most of the boys in my bedroom trying to log roll me without breaking my neck - but I suppose it did get my bedroom tidied for me (hahaha! it had all my work on the floor and because they had to get the hoist in they had to pick it up).

The exam is slightly stressful. I am not quite sure what is going to happen because I'm not sure that I will be able to sit up for the 2 hours it is going to take. I just keep comforting myself by thinking that even if I fail this completly I still will have a 2:1. Just, I would like to do well in it just to prove I can.

I'm just so frustrated - I have fought so hard this year to be normal - and to finish (I have an exam tomorrow and then term is over!) and suddenly it all goes totally pear shaped.

Thankyou all so much for your support - it means so much to me to know I am not the only person going through this. I guess i'm getting resigned to accepting whatever the RSD throws at me and trying to fight it, live with it and get my quality of life back.

However, a major achievment today was getting in the car! It took 3 rugby guys to lift me in and out but we managed it!!!! WOOHOO!! (just means when I go home at the weekend I will have to have them all come home with me or something!). I nearlly knocked myself out on the handbrake when one of them let go of me. However, it's a 4 1/2 hour drive home and I'm slightly concerned I will go insane doing that journey! oh well. It will get sorted!!

Thanks so much guys for all your love and support.

More properly after the exam.

Love

Frogga xxxxxxxxxxxxxxxxxxxxxxxxxx

I just wanted to say hi and to let you know I am thinking of you.

You know you really need to follow your Drs. orders to go to the hospital to be taken care of. Maybe they will be able to give you some help that the Drs. can't in their office.

I'm sorry that things are getting worse for you and hope you start feeling better really soon.

Ada

Hey Ada,

Thanks babe. How are you? how is the stim working out ? I have been keeping my fingers crossed for you! I hope the immunologist can help you with the CFS. I was worrying about you because you have gone so quiet.

I hate hospitals. I just re read my post and realised how down/ depressed it sounded. I guess I'm just frustrated with going downhill. Things will improve but if I go into hospital they will just make me worse. I am yet to go into hospital and come out better than I went in and I hate being prodded and poked by drs!

Love ya

Frogga xxxxxxxxx

I do know what you mean about hospitals. I can't stay in one as long as they want me to when I go in. I have panic attacks after a few days in them. My PCP springs me from them before my time is up. He tells the Surgeons if he has to come to my house to take care of me he will. I get hysterical in them I have also been overdose with Methadone in the hospital before.

I was just thinking with you being in the shape you are in, I think you need really good care to get better. It does depend on how good the hospital is also. It sounds like you have had your share of bad experiences in them too.

As far as the stimulator, we are going to turn it up tomorrow evening. I am scared. I have put it off now for over a month due to what it's doing to my voice and breathing. I can't yell at anyone because my voice keeps going down. LOL It goes down every time the machine goes off which is 30 seconds out of every minute. I still have to have it turned up 3 more times.

I lost my magnet that turns it off and Susan found it today. I swear I can't keep up with anything. I have wiped out the color on two tv's so far.

As far as the depression, so far it's not helping but the CFS and everything else has made the depression worse.

I got an appt. with the Immuneologist next Wed. I hope they can maybe find what's going on with me that makes my body shut down.

You have reason to be depressed and we all go through it so don't worry about how you sound, believe me I have sounded worse at times.

I hope that hospital bed is more comfortable then the ones in the hospital. That's another thing I can't stand in the hospitals. With the TOS I can't lay in one any length of time.

I'm glad you are out where you can talk to people and not be alone so much too, maybe that will help you with some of the depression.

Hang in there,
Ada