Optimistic Is Better Than Being Pessimistic.

  

Self portrait 
Alice Rahon.

http://en.wikipedia.org/wiki/Alice_Rahon

This morning I had an appointment with Maurits, my occupational therapist, to get his advice, so that Richie can get me sitting up better.

Maurits gave Richie a few tips and he will be back next week to see if they helped, he will also speak to Ruud from Summit, see if he can make torso support for me.

Right now, Richie needs to know, how to provide me with the support that I need in bed, so that I can sit up, and remain sitting up properly.

At the moment I am slumped to the left, sadly I can’t do anything to stop me slowly ending up hanging over the side of the bed.

Luckily Richie and the dogs came back from the park, and he immediately tried to get me sitting up again, rearranging and remoulding the support cushion as well as moving me.

It worked for another 5 minutes, then once again I am twisted, slumped over to the left side of the bed, it’s very upsetting and uncomfortable.

I hate it, instead of being able to sit in a relaxed way I am constantly feeling myself sagging over to the left, even after Richie has spent lots of time trying to get me to sit me up.

Extremely frustrating to have to put up with this amount of pain, discomfort especially as at the moment there is no solution in sight.

Oh well we will have to keep making the best of this uncomfortable situation, I am doing my best to remain optimistic, not easy but better than being pessimistic.

Always Looking To Improve Life.

Gayane Khachturian.
http://en.wikipedia.org/wiki/Gayane_Khachaturian

This morning Richie got me up at 09.30, to go to the toilet, before putting me back in bed with the support cushion moulded around me.

I have a small piece of foam put behind my left shoulder; Richie tried many things to stop me from sagging to the left, before trying this, it seems to work well.

Nice to sit in one place without sagging to the left which has not been very pleasant for me, i have hated the feeling

Also hated having to keep calling Richie to adjust me, sometimes this happened every five minutes, he would adjust me, it would feel good for 5 minutes.

Then within minutes I would be almost lying on my side, before it would became totally unbearable, then Richie would be called for help.

Last night as well this morning I managed to remain pretty much in the same place as where Richie had sat me up in bed, thanks to the foam rubber.

It was good to sit confidently in bed, while Richie was away for two hours having a driving lesson.

I did enjoy sitting up, without any problems, nice not to sag instantly, even nicer did not need to call Richie to help me.

Richie really does make my life much better in every way, everyday; he is always looking to improve life for me.  

It Could Be Just A Rumour.

 A Grave Situation (1946)
Roberto Matta.
 http://en.wikipedia.org/wiki/Roberto_Matta

It is good to finally have the support cushion back after being adapted, Richie will have to do a spot of remoulding under my left elbow but apart from that it’s good

‘

Recently I have been concerned about the news that the Fijnout theatre is leaving due to cuts to their government subsidy and a hotel with disco will take it place.

I sent mails to 4 local newspapers, the Fijnout theatre, the Amsterdam council, a local neighbourhood website.

I have had responses from 3 newspapers that were most likely to have run the story, all 3 claim to have no knowledge of this happening.

The Fijnout does not know anything either, but why would they, they did know the name of the man who owns the building.

The council department that deals with planning applications knows nothing, so right now it seems to be just a rumour.

 It feels great to hear from the newspapers and the council planning department as well as the Fijnout theatre have no knowledge.

As far as the Fijnthout theatre knows is that they have a rent contract until next July, one which they have every confidence they will get a new rental agreement.

I will check out a few more leads next week but right now it looks like it could be just a rumour, which would be great if true.                                                                                                                                                                                                                                                                                                                                                                                           l

It's A Pleasant Day Today.

Le cortège de Vénus 1949
Alberto Martini.

http://en.wikipedia.org/wiki/Alberto_Martini

It’s a pleasant day today; my good friend Anja came by this afternoon, which was very nice, always good to see her.

She helped me with some administration, feels good to do this on time and in the post, nice to get these things done.

Richie has done some alterations to the cushion, it is much better now; he has taken some of the filling out of the cushion that stopped my right arm from moving.

There is abit more remodelling to be done, Richie will take some more filling out of the pillow end and put it under my left elbow, as that needs building up.

Brilliant Richie can remodel the support cushion; already it is so much better to use noticing the difference Richie made yesterday has changed everything positively.

It feels so much better to use the support cushion than it did right away, I am so fortunate to have Richie adjust it for me.                            

I am feeling relaxed now, Anja has gone home, Richie took the dogs to the park for some running and playing.  

While they are gone I can write my post and enjoy the sunshine on the street and the happy relaxed sounds from the street.

In awhile I shall watch some of the Women’s World Cup in Germany with Richie, we watched some last week which was very good.

              

Finally The Cushion Has Arrived..

Marriage.
Jindrich Styrsky.
http://en.wikipedia.org/wiki/Jind%C5%99ich_%C5%A0tyrsk%C3%BD

No e-mail or telephone calls from Johanneke, my occupational therapist or her colleagues despite sending e-mails since Friday.

I have been left flopping over to the left; constantly almost lying on my left side makes my life extremely difficult.

Eating, drinking and typing are difficult hanging to one side; this situation is so difficult without the support cushion.

Without the support of the cushion I can do nothing, not even hold the bag of THC vapour up to my lips.

So sitting in bed writing my blog post will not be possible until I have the cushion, hopefully that will be soon.

I hope the cushion has been reduced in height so that the table will be able to fit over it and can support me during the day when I am sitting.

If not it will be no use to me, I can’t believe that it has take so long, 5 months 7 days since the appointment with Dennis Klein and my OT on 26 January.

They told me I should get it quickly; I was given to believe that in March I would get the cushions.

At 16.00 I got a call from a colleague of  Johanneke’s that she would bring the cushion at 17.45, she did and it’s here, I will try it out when I go to bed.

Put It Out Of My Mind.

 
Ballons, 1970.
Foni Tissens.
http://en.wikipedia.org/wiki/Foni_Tissen
 

Still feel shattered by what should have happened but sadly didn’t happen yesterday, I had been looking forward to 1^st July all week, and finally getting my support cushion.

I could not believe it when I phoned Quattron yesterday to hear that the support cushion had been sent, just not here but to the rehabilitation clinic on the Overtoom on Monday.

This was not the promise made to me by their representative Dennis Klein on 24^th June, he assured me then that the cushion would be adjusted and back with me on 1^st July.

I hope it has been adjusted as otherwise I will have to wait to get it after Dennis is back from his holiday on 25 July.

This process started on 26 January, looks like it maybe 6 months before I get the support cushion.

I hope that I will be pleasantly surprised and my Occupational therapist Johanneke will be back at work next week and will bring me the cushion.

That would be wonderful, almost do not believe that this situation will be successfully completed next week.

Even better if the height of the support cushion has been reduced, I am worried that the adjustment was not communicated just like where the cushion should have been delivered.

For now I will try and put it out of my mind and concentrate on enjoying the weekend by not thinking abut this until next week.

Trying To Stay Positive.

Piet Ouborg.
http://en.wikipedia.org/wiki/Piet_Ouborg

Today at lunchtime I phoned Quattron to find out when the support cushion would be here and was told it had been sent to the Rehabilitation Clinic on Monday.

I said this is not the arrangement made last week Friday, it was agreed that the cushion would be brought here.

The man from Quattron said this was not known to him, it had been sent to my Occupational Therapist.                      

 I can’t believe this has happened, especially as the arrangement made last Friday was that it would be adjusted on Monday and delivered back to me today.

Finding out that it has been sent to the clinic on Monday is upsetting, my Occupational Therapist should have informed me it was there.

I heard nothing, only a mail from her Wednesday late to say she was sick and would not be at work for the rest of the week.

So much for getting the support cushions today, more waiting and I can not be sure that the cushion got adjusted on Monday.

Sounds like it just got sent, hope that it Quattron did take 10 cm’s oiff the height of the cushion, so I can use the cushion for support when sitting up.

If they have not made the adjustment the support cushion is no use to me, I am trying my best to stay positive and optimistic.

Really hope that I will not be disappointed again next week,

Getting There Slowly But Surely.

 
The Past, 2006.
Anastasiya Markovich.
http://en.wikipedia.org/wiki/Anastasiya_Markovich

So far there has been no phone call to cancel the appointment, like a month ago, when Quattron cancelled their visit one hour before.

Abit of a shocker, I am sure they could have let me know before, an hour before the appointment was quite upsetting.

Guess today will be different, looking forward to getting the big support cushion.

I will try to give Johanneke the benefit of the doubt, but feel strongly that I need an OT that supports me, and who communicates with me.

Johanneke got here early so we could talk; I explained that the lack of communication was upsetting.

Made me feel that I was the last person to know what was happening, I said I preferred to be directly informed about things affecting me.

Johanneke has promised to keep me informed so I will carry on with her, it was good to talk it out with her.

Dennis arrived late, the cushion is ok, it gives me the support I need, but was too high, so would not be able to use the table and laptop.  

it needs some adjustments which will be done Monday and I should get the support cushion back next Friday.

Thumbs Up For Welzorg And Down For Quattron.

 
Raoul Santoserpa.
http://en.wikipedia.org/wiki/Raul_Santoserpa

What a week, tumbling out of the wheelchair, that has shaken us both up alot, guess we will have to get over our shock and get back outside.

Then getting calls from Agis, out health insurance Company, because of letters of complaint received, unhappy that I have been waiting for the support cushions since February.

Agis called Quattron, the supplier, who told them they would call me on Thursday to make an appointment to deliver the cushions.

They did not, when I called them on Friday, they denied that they had agreed to call me; they could tell me nothing, nor would they give me an appointment.

 Then I received an e-mail from Johanneke, my occupational therapist, informing me that Quattron had called her and told her they would deliver on 24^th June.

Amazing they could call her, but not me, not even an e –mail, once the support cushions are here I hope that I no longer have to deal with them.

They seem to not care about their customers, at least that is the impression they have given me, this was amplified by the total disinterest of whoever I spoke to on Friday at Quattron.

Welzorg on the other hand were great, they sent someone out on Friday afternoon, who straightened the bent support for the wheelchair, which meant I can use the wheelchair.

Brilliant response from Welzorg, I was very happy to thank them for their help, support, they really impressed me, not so Quattron, I hope they become more customer orientated soon.  

  

The Good News Is I Am Fine.

Trois figures - Les voyeuses - 1949
Alfred Georges Regner.
http://en.wikipedia.org/wiki/Alfred-Georges_Regner

This morning the woman from Agis called and left a voicemail message that she had spoken to Quattron, there had apparently been a ‘ little’ misunderstanding.

This was now sorted; Quattron said they would call me today to make an appointment to deliver the support cushions, sadly they have not phoned.

I can’t believe that this ’ little ’ misunderstanding that has meant discomfort for me, and I am sure many others too.

There was no word of an apology, that I had to wait a month, for the support cushions that I urgently need.

But thanks to Richie and about 15 assorted cushions, pillows that he places around me, I have managed to somehow sit in bed.

I shall call Agis tomorrow and request a fuller explanation, than the brief voicemail message I received.

That I got a call is all thanks to letters of complaints about my not getting the support cushions, complaints are not something Agis would like receiving.

We went to the market this afternoon which was great fun, we stocked up on Greek treats, on the way home crossing the road abit too fast caused me to fall out of my wheelchair.

We have no idea how it happened, one minute I was sitting, the next I was sprawled in the middle of the road.

Ten helpful people helped us, some stopped the traffic, one was a doctor who checked I was ok, then they helped Richie get me back in the wheelchair.

We went home, the wheelchair table hanging next to the chair, the bar supporting the table, was the only casualty and will need fixing before I can go out again.

That is not good as it could take ages, its Whitsun weekend and my Welzorg contact person is on holiday until June 20, the good news is I am fine.

It Is Inspiring Visiting Blogs.

 
Son et lumiere (1976)
Victor Reinganum.
http://en.wikipedia.org/wiki/Victor_Reinganum

I was inspired reading today’s post by Rhapsody in which she says

 ‘’ Life is filled with ups and downs. The trick is learning how to be fluid and move continually between the ebb and flow’’

A visit to Rhapsody Phoenix’s blog @ Rhapsody Phoenix Authentic Expressions is well worth it, I like going there and reading her posts.

http://rappingonamelody.blogspot.com/2011/06/life.html

I recently met a blogger called Ricky @ Cubanrick he has also been diagnosed with MS.

http://cubanrick.blogspot.com/  and Nicole @ My New Normals …Looking For Normal.

http://www.mynewnormals.com/  who also has MS.

Also met Mike @ This is my life and all that goes with it, Mike also has MS

http://franko2366.blogspot.com/

Also met another blogger Chib @ Hadubini - My-o-scope

 http://ebchib.blogspot.com/

It is always good, I think to meet other people, and read their blogs, I find it stimulating.

I am also enjoying visiting blogs I already know like Ana @ Hella Heaven

http://hellaheaven-ana.blogspot.com/ and Mitch @ Enjoying The Ride

http://www.enjoyingtheride.com/ and Muffie’ @ Kaleidoscope Muff

http://kaleidoscopemuff.blogspot.com/

Very good day today visiting other blogs, I have enjoyed visiting and reading their posts.

I hope tomorrow will be a good day and I will get good news from Agis that at last I will get the support cushions, which I urgently need.

That would be the excellent news I need this week.  

Maybe Good News On Thursday

 
Football, 1953.
Victor Reinganum.
http://en.wikipedia.org/wiki/Victor_Reinganum

This morning I got a call from someone from Agis, my health insurers saying she was phoning because they had received some complaints.

The complaints were about me not getting my support cushions; she wanted to know why that was.

So I told her that the reason that I have not got them was the disagreement between Agis and Quattron.

She seemed surprised at this, as if she did not know about any disagreement, she asked me to explain.

So I told her that Quattron were suspending supplying anything to anyone until Agis paid them again, she seemed extremely surprised at this.

She said that could not be as they had agreed to pay for the support cushions and promised she would sort everything out.

I also was promised that this situation would be resolved asap; she said she would call me again on Thursday to let me know.

So finally nearly a month later, after being disappointed at being let down so badly an hour

before I was to get the urgently needed cushions, I may get them after all.

I will not get excited until I know for sure, hopefully Thursday this week, that would be good news.

The Waiting Game.

 Naive Art.
Ricardo Ponce.
Biography: He received his first formal training at the Elementary School of Fine Arts (Escuela Elemental de Artes Plásticas “20 Octubre”) and the Academy of Fine Arts (Academia de Artes Plásticas “San Alejandro”) in Havana.

He was born on September 21, 1968 in Puerto Padre, Las Tunas Province. He is a member of the ACAA, the Cuban Association of Artists and Artisans and the AHS, the Hermano Saíz Association.

A beautiful sunny day today, looking forward to going out, I hope Riche will get the hang of the temporary new joystick.

Still no news about the support cushions that I was supposed to get on Tuesday, an hour before the appointment my occupational therapist rang to cancel the appointment.

Johanneke was angry to have to be the one to tell me the bad news; luckily she had the faxes with agreement from my health insurance that we could order the cushions.

She hopes that she can persuade Agis to pay for the cushions, as per the agreement with them.

That was in March, Johanneke then asked Quattron, on 2^nd April to make the support cushions.

I  was led to believe this would take two weeks, finally some weeks ago I heard they would be  here on 17^th may.

Feeling let down by them all, February we had an appointment with a representative from Quattron.

Dennis told us once Agis gave the go ahead they could be made in two weeks; Johanneke said getting the ok from Ages was a formality.

Now Agis and Quattron have a disagreement and until that is resolved no support cushions for me or anyone else.   

Permanent Damage To My Muscles.

Remedios Varo.
http://en.wikipedia.org/wiki/Remedios_Varo

Today is another beautiful sunny day, so far I have not started to lean to the left yet and have  managed to stay sitting wedged in by a multitude of cushions.

I am not looking forward to the really hot weather when I shall be roasting surrounded by so many cushions.

Looking forward to getting the extra support so that I can sit in a good position in bed, and not be almost lying on my left side.

Horrible feeling, the main problem with being well supported is that moving my arms is much more difficult to do and this makes typing really difficult as I can’t move my elbows.   .

The cushions are pilled up from under my armpits until my ankles, the cushions need to

also keep my knees upright and together, not flopping to either side.

The cushions stop the knees collapsing to both sides, which means that the my feet stay pressed up against the foam block at the end of the bed.

The deterioration in my torso muscles is because I had to stay in bed for so long, in all it was two years.

It took from august 2008 until august 2010 until the huge pressure wound had  completely healed up.

  

For two years I concentrated on the wound healing, I did not realise the extent of the ;permanent damage to my muscles.

Another Good Appointment.

"Ridicule is Nothing to be Scared Of’’ 2006.
James Gobel.
http://www.marxzav.com/artist.php?artistID=26#

Had another very good appointment at 13.00 today with Denis from Quattron and my Occupational Therapist Johanneke.

Denis measured me up for cushions, they will give me a stable position in bed, look forward to that, should get them in March.

It was only an appointment of 1 hour and 30 minutes, but I feel very tired now and so does Richie.

Be good to get these cushions, as I can not maintain a stable position in bed, and have spent ail afternoon collapsed. to the left.

This is very tiring and creates a lot of unnecessary stress which I do not need, not with all the stress of having Progressive MS.

Luckily Richie has found some more pillows and cushions and I am sitting alright now.which is brilliant after the last couple of hours of discomfort.

Off for a shower now and before that, maybe even a haircut, that would be pleasant, as my hair isa getting long on top.

See if Richie is feeling up to doing my hair tonight, as he seems to be getting a cold, hope I do not get it too.

]

Looking forward to a quiet relaxing evening now and a delicious dinner..

Pretty Happy.

Weird Art.

Had en exciting afternoon sitting in the front room with Richie and the dogs, it is another grey cold and very wet day.

Ideal for spending time at home, it was good fun being out there with Richie, the dogs sat one on either side of me which was cute.

This morning they were both up on my bed and it was very amiable which was very sweet of them to be so nice to each other on my bed.

The dogs sitting so sweetly next to each other without a jealous hissy fit was brilliant, especially Spike as he spends most time up on my bed.

Had some exciting news and that is that Ruud from Summit will come here on 17 May and do the final alterations and then he will take it to his workplace and cover it.

Will have to do without my electric wheelchair for 3 days then I get it back covered which Richie reckons will make it easier to get the lifting straps and jackets on me.

In return I should get a smart wheelchair with good arm rests and bright red seating and backrest.

Can hardly wait for this, it will be nicer to be got in and out in the electric wheelchair without too much strain and stress.

That has my preference and once the material is put over the foam it will not be so resistant to getting a jacket on or off.

Despite it being a grey day it has been fun being up out of bed and sitting in the front room.

Jenny from the Rehabilitation Clinic gave cus a pleasant surprise by bringing us the supprt cushions she said she would make last Wednesday round for me so soon.

An excellent surprise, they are installed around me now and seem to work well and give me the support that I need.

So all in all feel pretty happy that I am being so well looked after these days, the people from the RCA are very good at giving us the help we need.

Mutual support is very important for us all that is why it is important we keep giving Steve @ The Wheel of Fortuna support

Especially now after the Memorial for BobRobert on Saturday in Belcher, this is the time when the grieving for BobRobert will really start.

Hope we can keep givng the support we have been giving Steve, please vist


http://spinfortunaswheel.blogspot.com/

and leave a supportive message to let him know he is not alone.

Could you also please spare a thought for another species, the Vietnamese Rhinoceros.

Visit the website


http://www.helpanna.org/

And help save the Vietnamese Rhinoceros