Thursday, June 04, 2009

Really hope that on June 10 when Ton, the nurse from the RCA is here with Doctor Stolwijk that they will have some good news for us.

Starting to get very concerned about the strange posture that my body has adopted.

Really hoping that despite this I will be able to go outside as I am getting quite fed up with spending so much time in one room.

It is abit like being locked up, luckily for me I am not in solitary confinement not with my darling Richie here with me and visits from friends.

Nevertheless this would not have happened if Arca ( advisors to Amsterdam City Council)had actually listened to me when I told them time and again that I could not sit properly in the power chair.

This is now in the past and I actually do not want to talk about it, apart from to make a point to the relevant people that their penny pinching has been very expensive for me.

I have lost 9 months of my life that I will never regain.

Additionally being confined to bed has exacerbated my condition and given me some new problems as my body has become even more sensitive because of the prolonged lying in bed.

The muscles in my back are incredibly weak and of course make it more difficult for me to sit well.

My posture can best be described as sitting like a crooked banana, my hips go one way and the top of my body the other.

With abit of a corkscrew effect round the waist, this tips me slightly to the right and my left side tries to keep the balance which results in a strained left shoulder.

All of this has given me a lot of extra pain and discomfort; really hope that this year Richie and I with the support of a good friend will do our best to get a well adjusted power chair so that I can go out.

Really want to go out and enjoy being outside feeling the air and hopefully this can happen before not too long.

Would love to enjoy the summer and see something of this lovely city, shall do my best to remain positive and optimistic.

Not easy to do but will do my best to remain optimistic although at times that is difficult to do.

Shall stay as optimistic as possible first take the baclofen and drink sufficient water and get on with the day.


JC said...

I'm up having my first coffee of the morning

Your post is the first one I've read

I have had my run around with Dr's

I don't go to them unless I really really need to ... like when I went by ambulance to the hospital and was in my coma

Up til then, there was nothing wrong with me ... I was just a silly lady thinking I was sick.

When I was released from the hospital and went to my Dr's they told me ... oh, we heard you were in a coma ... how are you now.

A few months later I went in having trouble and they were back to the ... crazy lady who thinks there's something wrong with her.

I gave up on Dr's ... I hope that I can maintain my goofy health for a long time. I fall, bump into things, have migraines like crazy, you name it ... but, ask my Dr .. there's nothing wrong with me.

I do hope you get to go outside soon. I love to hear the birds sing. I love to smell the air.

When I woke up and could not move. All I wanted was to go home. And home I have been. On my bad days, I remember that ... that's what I wanted.

So, when I can't drive due to my headaches and I fall due to my goofy leg, I remember what I wanted.

It's the small things in life my dear and I hope that for today you can find some joy.

Hugs and know that I'm listening

Kelli said...

I have had my coffee, my first glass of water and I too am going to be as optimistic as possible.

I just saw a hummingbird at my feeder. Snapped one photo.

Your past 9 months have most doubtly been so difficult for you. I am so sorry you have to go through all of this. I wish you the best and hope you are back in a chair that meets your physical needs very soon.


Herrad said...

Hi JC,

Lovely to get your comment, did see it earlier but then my physio was here followed by two friends and a bottle of pink bubbly.

It has been a good day.

Hi Kelli,
Thanks for your comment, how lovely that you can see humming birds on your bird feeder remember them from Trinidad.


Herrad said...

Hi JC,

Know what you mean about wanting to be at home.

Since I have been in bed there were a few moments where it looked like I might have to go to hospital.

Luckily when the plastic surgeon came to look he decided the sore could heal ok at home, he thought staying at home would be best for me.

So did I and I still do.
Home with Richie is where I want to be.

ps thanks for listening

Libby said...

herrad..definitely, home with richie and his total love for you is where you need to be...even if you were outside in paradise, if richie wasn't there, it would be worthless, right? his love is a big part of your health, isnt it? but fresh air & outside is next best! (with richie!)

Herrad said...

Hi Libby,

Thanks for your very sweet comment.
You are right paradise without Richie would not be paradise.


Webster said...

If you need support with ARCA again, don't forget to post their mailing address here. I'm certain your blog-readers will fill their mailbox (Snail mail or E-mail, which ever) to overflowing with support for your concern. It'll be enough to get their attention, of that I'm sure! They'll know not to ignore our Dear Herrad again!

Living Day to Day with Multiple Sclerosis said...

I hope June 10th is your day!!! I will be crossing my fingers and toes for you. I would love to hear that you are able to go out and bask in the sun for a bit.

Cranky said...

Herrad - I'm thinking happily of the time when the photos in your post of the day show you outside ... and the picture is from THAT DAY.

I can't imagine what it has been like for you to be in your home for 9 months. I have a lot of respect for you and Richie to maintain yourselves and your attitude in your situation.

Lille Diane said...

Oh such lovely friends you have, Herrad. I think that was so cool what Webster offered! I would email or write them, too! I will visualize your spine and back getting straighter and stronger when I say my prayers/meditate.

I just wanted to let you know I was (am) here. Sending you lotzzzz of love and hugzzzz, Herrad.

I'm not sure what "pink bubbly" is but it sure sounds good! ;-)

Herrad said...

Hi Webster,
Thank you soooooooo very much for your comment what a great idea.
Should it be needed will for sure post their addresses.
Thanks again great idea.

Hi Tara,
Really hope that next wednesday there is good news for my post.
Look forward to posting about it and letting you all know.

Hi Cranky,
Really appreciate your comment.
Thanks for reminding me again what my goal is, which is to go outside.
Have to start getting organised for that.

Hi Lille Diane,
Lovely to see your comment and great to know you would email ARCA if needed.
Thanks for the support means alot to me.
You are right I do have lovely friends who I love dearly. and that includes all of my blog frfiends.

Pink bubbly is sparkling wine, it was delicious, ate strawberries and sipped bubbly with 2 good friends a pleasant afternoon indeed.

Thanks for all your support really appreciate it very much.