Thursday, June 30, 2011

A Very Difficult Day Today.


The Misunderstood, 1938.
Collection of The Man Ray Estate.
http://en.wikipedia.org/wiki/Man_Ray

I am having a difficult day, it is hot and I can not sit up, keep leaning to the left which makes typing hard to do.

Not good feeling like this, so unable to even sit propped up by heaps of cushions, it’s horrible, feel even more handicapped.

Felt like my whole body had let me down badly today, like the only thing that was working were my brains, sadly they could not help me to sit.

Having a shower helped me feel better; now sitting in the front room life feels more pleasant, than this afternoon.

I got a letter from Agis telling me that I will be able to get cannabis, mediwiet free on prescription.

Apparently the Ministry of Health has decided that for some diseases cannabis is the most effective medication, so should be free on prescription.

That is excellent news; I hope Agis send me the relevant document so that I can request a prescription from my doctor.

Hopefully this will happen next week, the mediwiet via the chemist, is a Haze type of cannabis which is good for relaxing the muscles.

Looking forward to getting that, as well as the support cushion, which were promised tomorrow.





.

Wednesday, June 29, 2011

Enjoying Richie's Company.

 
Doigt, oil on canvas, 2000
Bernard Dumaine
http://en.wikipedia.org/wiki/Bernard_Dumaine
 
Another hot, muggy day no sunshine as yet, I managed to sleep last night which was wonderful and so did Richie.

The airco has arrived, that is good news now Richie needs to work out where to place it and where to put the outlet pipe.

This morning early I was woken by a huge spasm, luckily managed to sleep on but kept being disturbed by spasms.

This did not stop me dozing on; when we were both finally awake it was to a dull looking very muggy warm day.

I am glad we have got a small airco unit; I could not have waited to appeal the no decision about the airco.

Right now I need to find a new laptop, need to research this well, I heard an AMD processor is best, need to know why.

A reliable laptop is very important for me; mine keeps crashing which is frustrating for me, hate having to restart so often.

My right arm has ceased to function now; glad I can still stretch it out but only just, the muggy heat makes everything worse.

I think a shower will make all the difference, look forward to sitting in my wheelchair in the front room and enjoying Richie’s company.






Tuesday, June 28, 2011

No Prospect Of Enjoying Hot Weather Again.


Come To Me
Colin Middelton.
http://en.wikipedia.org/wiki/Colin_Middleton


Today looks totally different to yesterday, the sky is overcast, it’s hot, sticky, it feels and looks like a thunderstorm is brewing.

The heat has not diminished, still very hot, I feel like I have been dipped in hot sticky toffee, the only way I could sleep last night was by taking a sleeping tablet.

Even then it took ages for me to sleep; I drifted off quickly but seemed to wake within minutes.

So dark now that I have put the light on, weird to get such extreme weather, one minute it’s finally summer and the next it is all over.

Would not be at all surprised, if we get a huge thunderstorm very soon, perhaps before the afternoon.

Feels like the heat is steadily getting worse, I am wearing less clothes to cope, boxer shorts instead of leggings, a short sleeved loose t shirt instead of long sleeves.

It all helps me cope with the heat, felt sad last night that being born in Trinidad I can’t handle the heat anymore.

I have always loved hot weather, was happy to come home from work on a hot day and change into my favourite shorts and skimpy t shirt.

Now I am indoors with a fan and still feel dreadful, and sadly no prospect of ever enjoying hot weather again.







Monday, June 27, 2011

Hot Monday.





Carribean Caterpillars with Spade Fish
Mairead McGeown

It is hot summer here today, 30 degrees, blue skies and sunshine; there is no direct sunshine on our building.

Our apartment faces to the east so we only have sunshine briefly in the mornings until 11 then its gone, that’s a shame as sunshine in late afternoon is so enjoyable.

We have curtains closed to keep it cool inside which helps some, but does nothing to diminish the temperature.

Just heard that there maybe thunderstorms tonight, which may bring the temperature down again.

Both windows in the bedroom are open to catch the breeze, the fan is right next to me, so for now I am doing alright.

Richie told me he is buying a small airco unit, which should be delivered here on Wednesday; I think that will do the trick.

Sounds like hot nights will be bearable for me, with the airco by my bed, and the mosquito net to protect me from bites.

Looking forward to wearing my summer t shirts and enjoying the good weather while it is here.

The warmth will be good for our strawberry plants, looking forward to eating more delicious strawberries, so nice to share some with Richie every day, love seeing him pick them.


Sunday, June 26, 2011

My Pain Is Manageable During Daytime.



 
Elle Loge La Folie, oil on canvas, 1970.
Roberto Matta
http://en.wikipedia.org/wiki/Roberto_Matta


The weather is improving, the clouds are slowly moving away and the sun is starting to shine now.

Friday and saturday were cold, grey, rainy, on both days I wore my big fleece top to keep me warm.

I think unless I am very mistaken, that maybe the last time until autumn, hope summer will start to happen.

Be nice if it were to happen slowly, rather than go from 16 to 30 degrees which is like going from cool spring to blazing hot summer.

This morning I was woken abruptly from deep sleep by my painful right arm and lots of leg spasms.

Trying to drift back off to sleep proved difficult to do; it only worked briefly, kept waking up with my right arm folded tightly over my chest.

Every tiny involuntary movement woke me; my arms were dreadful this morning, better now I have done my arm exercises.

Also better now that I am reading newspapers, e-mails and typing my post, during the day my pain is manageable because I have other things to focus on.

It’s nighttimes that can be difficult, waking in pain and trying to sleep without getting caught up in dark thoughts is not always possible.







Saturday, June 25, 2011

Keeping Hopeful.



Zambezia, Zambezia, 1950,

Wilfredo Lam.


Last night we both noticed mosquito’s, for the first time, up until now I have not needed to sleep under my net.

Fully expected to wake up to a hot sunny day, sadly it’s the opposite, a grey, dull, overcast cool day

Guess any day now we will wake to hot, humid weather; I shall enjoy these grey days and take it as it comes.

Yesterday was a trifle upsetting having the support cushions here at last, then noticing that the size was not correct.

This meant I would not be able to sit up and use my table or my laptop, sitting fully supported is the function of the cushions.

It was a strange feeling being totally surrounded by the cushion, instantly felt the support that they provided.

Dennis Klein from Summit has promised that the cushion will be adjusted this Monday; he said they will be back next week Friday.

I hope he is right as I really need the support they offer now, to sit up in bed, keeping hopeful that they will be here when Dennis promised.

Having a cocoon around me is not my idea of fun but sadly I need support now, if the cushions provide that then that is brilliant.





Friday, June 24, 2011

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.

Thursday, June 23, 2011

Feeling Good.



 
The Strange Country, 1940.
Conroy Maddox.
http://en.wikipedia.org/wiki/Conroy_Maddox
 
Richie got me out of bed quickly as I was having stomach cramps, which were painful and caused spasms.

We were both glad the transfer was fast, nothing happened until I was placed in the Carendo shower chair above the toilet.

What a relief, brilliant that we got there at the right time, after a lovely shower I felt good, right now sitting in the front room writing this is pleasant.

The dogs are both waiting for Richie to get home, he has just gone to collect a parcel, these days now the post offices are gone all parcels get left at a shop.

Tuesday we were surprised to get a note in our letterbox informing us that the post had tried to deliver a parcel, shame they did not ring our bell.

The paper stated we could collect it on Wednesday, Richie went there yesterday, but could not get the parcel.

As the woman in the shop decided that as well as his identity pass, he also needed to have a letter addressed to him.

Riche got so wet in the torrential rainstorm that he did not go again yesterday, he went today and anther person dealt with him, who did not need to see any envelopes.

So seems that the person he dealt with previously had got out of bed the wrong way, and was taking it out on the customers.
  

Wednesday, June 22, 2011

A Good Afternoon.


 
Cycle Vanitas.
Eva Svankmajerova
http://en.wikipedia.org/wiki/Eva_%C5%A0vankmajerov%C3%A1

As Richie was about to sit me in the wheelchair, the phone rang, it was Marjolein van den Berg from Agis.

She enquired whether I had received a phone call from Quattron yet, when I said that had not happened, she promised she would ensure I got a call.

Forty minutes later Dennis Klein phoned me, he seemed puzzled why he was calling, I explained.

That it was because of the agreement they made with Agis, that they would phone me and let me know when I would get the support cushions.

He said they always make the appointments with the client’s occupational therapist, I said fine, but it would also be good to inform the client too.

Especially when this was agreed with Agis as it had been, on 9th June, but sadly they decided to ignore this promise as well as me, the client.

I said that I hoped the appointment wouldn’t be cancelled again an hour before the appointment, Dennis assured me that he would be here with the cushions this Friday.

The appointment this afternoon with Annelies, my mobility aids advisor and Welzorg went well, they will do their paperwork and organise an appointment with Ruud.

My case manager Jacqueline came along which was useful, we discussed the arco, she said she would ask questions, before they left I gave Annelies the presents which she loved.

Tuesday, June 21, 2011

Cool, Grey Summer Solstice Today.


Reclamation, oil & gouche on board, 1944


It has been a pleasant, relaxed day, today is the summer solstice not that you can notice that it is.

Sadly the weather is overcast, cool, grey with the strong possibility of rain, not at all hot, summery and the middle of summer.

Even the nights in the last couple of weeks have not been as nice and bright because it has been so overcast.

We did need the rain as this spring has been very dry; it got quite warm middle of April, beginning of May.

 I was really hopeful that we were set for a gorgeous warm summer, we are still waiting, Easter was gorgeous, since then it has got cooler and damper.

Good for farmers, gardeners not so for the rest of us, I am longing to get outside again in a t-shirt like I did on 24th April.

Who knows it could still get warm again, as it did last year when it was also cool in June, then we had a huge temperature swing from 20 to 30 degrees literally overnight.

Tomorrow is the appointment with Annelies and Welzorg to discuss Ruud’s suggestions for further adaptations that are needed to the wheelchair seat.

Annelies is pregnant so it might be that we do not see her again before her pregnancy leave, so we have a wee present for her, some shower gel, shampoo and body lotion.



John Tunnard
http://en.wikipedia.org/wiki/John_Tunnard

Monday, June 20, 2011

A Mere Formality.




 Hammersmith, 1946.
Julian Trevelyan.
http://en.wikipedia.org/wiki/Julian_Trevelyan

I may request another occupational therapist as I am unhappy with my current ones seeming lack of consideration.

Think I will discuss this with Richie see what he thinks and whether he thinks I can go on with Johanneke.

I feel dubious about being able to carry on, really am finding it difficult to deal with someone who seems not to understand that having a progressive disease means swift action.

Johanneke led me to believe at the joint appointment with Quattron, on 26th January, that she and Dennis Klein would do their paperwork quickly.

She told me that getting the o.k. from Agis was a mere formality, and I should get the urgently needed support cushions quickly.

The first shock was getting an e-mail from Johanneke at the end of February to say she had just sent the paperwork to Agis for their approval.

When I queried this I found out that Dennis sent her his paperwork on 28th January, Johanneke got the supporting letter from the doctor the week after.

Johanneke’s part of the paperwork was finally completed at the end of February, at the end of March Agis said yes.

The cushions went into production 2nd April; I will get them finally on 24th June, so much for a mere formality.




Sunday, June 19, 2011

Three Lovely Surprise Awards.

 

What a lovely surprise when I received a message from Ana @ Hella Heaven that she had given me another 6 awards.
http://hellaheaven-ana.blogspot.com/

She received them from Maznah @ Cooking Varieties http://cooking-varieties.blogspot.com/

Who also gave her The Sunshine Award, which I was happy to pass on last Tuesday.

I have taken 3 of the 6 awards, the Blog Star Award, Best Blogger Award, Happy Blogging Award.

Rules:
1. Accept the award, post it in your blog with the link of the person who has given you.
2. Pass it on to 15 bloggers to keep the ball rolling.
3. Let the nominated bloggers know about their award by leaving a comment on their recent post.

Here are the people and their blogs I want to pass these three awards too:

Satheesh Kumar @ A Romantic Touch

Diane @ A Stellarlife

Living a life with Multiple Sclerosis and all the rest. This blog will include my views on current events, disability issues, entertainment and silliness, politics, health issues, and I am sure to offend some; but the celebration of diversity is my main goal.

Kris @ Behold The Metatron Tasteful Living In NYC

Kalva @ Curry In Kadai ~ An Indian Cooking Blog

Cooking Made Easy With Delicious Indian and Andhra Vegetarian Healthy Homemade Recipes


Jammies @ Curmudgeonette
Cleveland Amory once said that only men could be curmudgeons. Fine. I've set out to be a curmudgeonette. I'm middle-aged, single, owned by two dogs and so white bread all my clothes should say "Wonder." If it weren't for the sock sex, I would be absolutely indistinguishable from other Midwestern females. Fortunately, I have a few little quirks that keep me slightly different.


Kelli @ Gumbo
A little bit of this and a little bit of that. Family, friends, daily challenges, living with chronic illness and disability and more....


Chib @ Hadubini - My-o-scope

Zoomdoggies @ Howling at the Moon

Being an account of life with a guy, a recently-ex-teenager, a couple of narrow dogs, retirement from a job as a tech writer, and MS.

Not necessarily in that order.


Joan @ Joan's New Musings Musings Of a Retired Scot.

http://joansnewmusings.blogspot.com/

 

Nancy @ LIFE IN THE SECOND HALF

WHERE AN EMPTY NEST MEANS ENDLESS OPPORTUNITIES!

http://lifeinthesecondhalf.blogspot.com/

 

KOS @ Keep On S’Meyelin!

http://keeponsmyelin.blogspot.com/

 

Aviva @ Sick Momma

http://sickmomma.blogspot.com/

 

Juli @ Tales From the MS Front

assorted rants and maybe some silly things about having MS

http://bigthingsandaduck.blogspot.com/

 

Amelia @ Tales of Life with Multiple Sclerosis

In 2002 I got the earth shattering news that I could possibly have Multiple Sclerosis. In 2003 that news was confirmed. I was 29 years old. I wanted to start this blog to go over the last few years of dealing with this illness and look forward to the future as it happens. If I can give hope to just one person, that life isn't over when you get life changing news, then this will have been worthwhile!

http://talesoflifewithmultiplesclerosis.blogspot.com/

 

Jo @ THE END OF THE RAINBOW: LIFE AFTER BANKRUPTCY

Lessons In My Search For Serenity And Financial Freedom

http://theendoftherainbowlifeafterbankruptcy.blogspot.com/

 

Erin @ The Lemon-Aid Stand

http://thelemonaidstand.blogspot.com/

 

TT’S @ TT's-Paint and Spackle Grape Juice

I'm undiscribable at times,loving,compassionate, blah,bla... I fell in love with my husband within the first week we met and after 36 years I'm still madly in love with him. Even counting the 23 years with him in the USMC. I still get giddy whenever he calls. The parentals have moved in with us and I'm on fabulous meds!! LMAO

http://tt-paintandspackle.blogspot.com/

 

Lucy @ What Life Is About

http://whatlifeisabout-lucy.blogspot.com/

 

Tara @ Living Day to Day with Multiple Sclerosis

Living with Multiple Sclerosis is a daily battle. MS is the invisible disease or at least for most people. We fight many emotional and physical symptoms all the time. We need as much support as we can get. However due to the invisible symptoms we tend to not get a lot of support and that brings on more emotional stress which in return brings on more MS symptoms. A Vicious cycle.

http://livingdaytodaywithmultiplesclerosis.blogspot.com/

 

Kimberly @ My Journey with Multiple Sclerosis

Every journey starts with a single step. My journey started "officially" in March 2006. Now, four years into my journey, I often find myself amazed at how this disease taught me a lot....about me. I find the hot air balloons a perfect representation of my journey, with all it's ups and downs....I still soar.
I hope that everyone who I have passed these awards onto will enjoy passing them on as I have done.

 


Saturday, June 18, 2011

Treat People With Respect




Portrait de Maria Felix
Bridget Bate Tichenor.
http://en.wikipedia.org/wiki/Bridget_Bate_Tichenor

Yesterday evening I received a mail from Johanneke, my occupational therapist, I have been mailing her for weeks, without getting any response.

On the Thursday I sent her an e-mail requesting she phone me the next day, I thought a phone call would be a good way to discuss the situation with Quattron, she did not phone.

The only e-mail I had was last Friday, telling me Quattron had called her and the support cushions would be delivered on 24th June.

That was all, nothing more, I responded and queried why it would take another two weeks and asked if she would be here too.

No response, repeated the question in a few mails during the week again nothing, until yesterday.

Johanneke finally lets me know why it was taking two extra weeks to get the urgently needed support cushions.

The delay was because the 24th June was the only date both her and Dennis Klein could agree on.

Could this not have been communicated in last week Friday’s mail, had I been informed immediately the situation would have been clear.

I was angry and mailed her right away, saying that being fully informed is important especially in my situation, felt she had attempted to patronise me.

Feel very disappointed that my occupational therapist can’t treat me correctly by keeping me informed.

If my therapist can’t treat me like a normal human being and show some respect, how can we have a good working relationship.









Friday, June 17, 2011

Many Appointments To Get Anything.




Monomakh Hat.
Oleg Korolev.  
http://en.wikipedia.org/wiki/Oleg_A._Korolevz
Well I guess as there is no news from Johanneke, my occupational therapist or Dennis Klein, from the support cushion suppliers Quattron, I will have to wait until next Friday.

Shame there is no flexibility, would have been great to have got the support cushions immediately that the ‘conflict’ between Agis and Quattron was resolved last week.

Funny despite being disappointed so often since 2006, things like this still get to me, when I was diagnosed in 2006, I thought naively that I would receive the help I needed.

Since then time and again the lack of consideration, care and often total disinterest to give help has been amazing.

What gets me is how the budgets for supplying aids to the disabled are strictly guarded, and yet so much money is spent on the peripherals, such as appointments.

Before I can get an appointment with a supplier, I have appointments with occupational therapist and then case manager and consultant.

Next week I have an appointment with Annelies, my local council advisor and Welzorg
to discuss what adjustments I need to the seat.

No problem with that, what I find strange is the appointment will, take place without Ruud from Summit, who knows precisely what adjustments are needed for me to sit well.
       
Hopefully the conclusion is an appointment with Ruud, which will result in adjustments which allow me to sit better in my wheelchair.                      .



Thursday, June 16, 2011

Negative Effect Of Mass Tourism.


Landscape with house.
Antonio Guirado.
http://en.wikipedia.org/wiki/Juan_Antonio_Guirado
Another grey, rainy day, we seem to be getting spring weather now, after we had summer in spring.

 I think this is because of global warming, destruction of the planet, purely it seems for short term profit.

We watched a program on BBC TV last Sunday about the negative effects of tourism, the program followed Stacey, a young woman on holiday in Kenya.

Stacey was enjoying an all inclusive holiday, which meant she could eat and drink as much as she wanted, plus go on excursions.

It became clear that the money that people pay for all inclusive holidays often stay in the country where it is paid as many holiday resorts are owned by overseas companies.

The money paid by the tourist does not enter the local economy at all, Stacey discovered that staff at her hotel were working ten hours a day for 3,60 (pounds).

Stacey was taken to see where staff lived; it was shocking to see the shacks they lived in, the dirty water, the sewage and the overall miserable living conditions.

She also was taken to another hotel compound, where workers were sacked when they asked for their wages, after they worked for a year and three months without pay.

Trying to talk to management did not resolve the situation, so Stacey contacted the Minister for Tourism, who got the money paid out.

Stacey also visited a golf resort that had built a wall which stopped village’s access to clean water.

They had built a water pump in the village which did not ever work, so villagers were walking ten miles for dirty water.

This situation was resolved as soon as Stacey spoke to an embarrassed manager; he got the pump fixed immediately.

The next day Stacey was taken to see a Masai village, the tribe were driven off their land by the golf resorts, now they earned their money performing for tourists.

Tourists ere brought there by hotel minibuses, each paid 40 pounds; the drivers gave them the money in front of the visitors.

Before they left the headman would see the drivers who demanded 37 pounds back, leaving the villagers with just 3 pounds.

Stacey went to the resort who were shocked at the news their drivers were doing this, this would be investigated, they also agreed to allow villagers to sell their goods at the resort.

Small victories but important ones for the people involved, what would be even better if people became aware what the effects of tourism are.     

All-inclusive holidays do nothing positive, it has many negative effects; people are driven off their tribal lands, denied clean water and exploited so that tourists can enjoy cheap holidays.   







                

Wednesday, June 15, 2011

A Gray Wednesday In June.



Gerome Kamrowski.
http://en.wikipedia.org/wiki/Gerome_Kamrowski

Yesterday was great fun passing on The Sunshine Award from Ana @ Hella Heaven; it was good to pass the award onto other bloggers.

I hope that the blogs I passed the award to will have as much fun passing it on as I had hopefully with less of a struggle than I had.

It was a lot of work, took me about 4 hours to complete, this is because my hands, arms are getting so much weaker now.

Really needed the distraction yesterday of passing the award on, it took my mind off my painful and weakened arms.

It also took my mind off of wondering how a good friend was doing, who had heart problems on Saturday.

Just heard he is ok, back home to recuperate after an angioplasty procedure at the weekend, its brilliant news that Erik is home again.

Was shocking to get an e-mail telling us that Erik had been rushed to hospital, confirms again for me that living in the moment is important for us all.

None of us know what will happen next, nor should this become a preoccupation at the cost of enjoying the moments.

This is not easy to do, yesterday started with me waking up crying because of the physical pain and mental anguish of my deteriorating situation, it ended with laughter.

 






  

Tuesday, June 14, 2011

The Sunshine Award,.


The Sunshine Award.

I have just been given The Sunshine Award by Ana @ Hella Heaven

" To see what is in front of one's nose requires a constant struggle." George Orwell


Rules of the award:

 1- Thank the person who gave you the award and link back to them.
2- Tell us something about yourself.
3 -Nominate 10 other bloggers.
4 -And let them know you awarded them.

Thanks Ana for this lovely award, I appreciate getting this and passing it on to other blogs.l
I do not like rules.
I could not restrict myself to ten blogs.

Here are the blogs that I want to give this award to:


Donna @ Arranging Shoes: thoughts from a wonky walk girl who had a bean in her brain


Carole @ Carole’s Blog: The MS Roller Coaster. A ride that never ends.

Cathy @ Dare To Think: A haven for dreams, ideas, rest

Mitch @ Enjoying the Ride

I have Primary Progressive Multiple Sclerosis and sit in an iBOT wheelchair all day. So why do I lead such a contented life?

Webster @  halt stop forget relax

Living a life with MS. This is a place where I say what I want; I can criticize, be rude, and fart out loud if I need to. I can and will get pissed at my MS, but prefer to work along with him. Usually I am well-mannered and gracious and behave myself. So do come in and ride along with me.

Andy @ Jughead's Baltimore Blog, Our Life With Multiple Sclerosis

These are the things that make me scratch my head and say "Whaaaaaa"?
Janis @ Just Breath

Cathy John@ Licking the Honey

LIVING life with Multiple Sclerosis

Maryann @ MS and Me

Stacey @ Multiple Sclerosis & Me

MS: Multiple Sclerosis, My Story... I am a Trinidadian; I will use lots of Trini slang/words and will explain as I go but lime=hang out; i will use that a helluva lot!
Nicole @ My New Normals…..looking for normal.

Cubanrick @ mylifeonMarS

I was diagnosed with multiple sclerosis in 2010. I'm currently on disability and I'm housebound. I'm trying to deal with daily life and bringing you along on my journey
Frank @ Quest
Quest is an editorial blog on politics, gay rights, disability rights and life issues. In an effort to lighten things up, Quest is peppered from time-to-time with pop-culture.
Rhapsody @ Rhapsody Phoenix Authentic Expressions

Stephany @ Soulful Sepulcher

I am on a journey. Take a walk with me. Life is short. So stand tall. "Always go too far, because that's where you'll find the truth."~Camus
The Unconventional View

Mike @ This is my life and all that goes with it!

This is for when I have something to say but nobody to say it to. I suffer from MS and Diabetes as well as an insane addiction to coffee. I am who I am and nothing more. I hope you find something here that interests you and if not then let me know what does and I will see what I can do.

Mary @ Travelogue for the Universe

A rambling train of thoughts about the universe and our micro solar system consisting of our dear Sun and other planets in a magnetic dance while we hurtle through space on the face of a rock and stare at flat screens where we attempt to connect while we detach.
Lucy @ What Life Is About

Robin @ Wheelchair Bird aka. Robin Oliverio ~ Cauda Equina Syndrome~ Physical Challenges~

For people who live with Challenges that may or may not involve living with Mobility Issues,Cauda Equina Syndrome,Chronic Pain, MS,& all disabilities. If you or your loved One has physical challenges you can relate to postings here regardless of what the diagnosis may be.

Chekoala @ ... .... Wobbly teetering blogging

... ... ... ... things you don't notice are much better to have working ... ... until the shoe is not on the other foot

Sherry @ Word Salads or the Demyelination of Me

Living single with multiple sclerosis and the loss of a child

Rei @ NecROSEphelia

We're the lost children can you hear us calling? Voices of doom echoing in your head... We're the lost children can you hear us singing, songs of despair we're infecting your soul..

Monday, June 13, 2011

Thanks.


Upward Draft.
Naohisa Inoue.

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


Thanks to letters of complaint, about not getting the urgently needed support cushions, which had an effect, as Agis called me and tried to get Quattron to deliver asap.

Now its up to Quattron, to actually supply the cushions, they want me to wait another two weeks, until 24 June.

I need them now and Agis also want me to get them now, the only one that seems disinterested to supply me quickly is Quattron.

Shame there are so many working and making money out of disabled, handicapped people, by supplying them with aids, who do not seem to understand their needs.

Nor the fact that the aids are urgently as well as desperately needed by people like me who do not have the energy to fight for everything that we need.
Yesterday I got a comment from Stephany, in which she put a link to her blog, http://bipolarsoupkitchen-stephany.blogspot.com/2011/06/quattron-make-support-cushions-herrad.html
Reading Stephanie's post made me cry, then I realised it was about me, that I was crying.
I guess that reading my story as if it were someone else’s story, really got to me and had me howling.
Sobbed for awhile, tried to get calm, refocus on what I have, Richie’s love, care, friendship and support, and the friendship and support of friends.



  

 .


Sunday, June 12, 2011

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 24th 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.