Feeling positive despite limitations.

 

Roberto Matta

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

Two appointments I was dreading one yesterday and one today went very well which was a tremendous relief for Richie and I.

The appointment yesterday was with my case manager as well as my advisor, they both work for the councils mobility Department.

They are both very good women, who have to work within tight parameters nevertheless they do as much as they can for me who is admirable.

2 other people were also present and they were Percy from Welzorg and Ruud from a company called Summit, they make the custom-built wheelchair backrest.

We were both not looking forward to this meeting however as soon as Jacqueline my case manager arrived the appointment started positively.

She suggested we make a list of all the things we did not like about the wheelchair, and there were many points all of which were noted.

By the time everybody was here the list was completed, at first the four of them turned their attention on the wheelchair examining it thoroughly.

Finally Percy said that there was nothing that his company Welzorg can do to improve the wheelchair finally there were no more prevarications.

Right away Jacqueline decided that the only cause of action now was that I needed a new wheelchair.

This means a new supplier so I do not have to deal with Welzorg anymore about my wheelchair which was fantastic news this cheered me up tremendously.

On the 30^th of January I have an appointment at 1400 with Annelies my advisor and somebody from the new wheelchair supplier Beenhakker to discuss the new chair.

In the meantime Ruud from Summit will temporarily adjust the backrest on the wheelchair, as soon as it known which wheelchair I will get he will make a custom built backrest for the new wheelchair.

Richie and I are very pleased with how things went yesterday this really is progress and this time we will make sure the new wheelchair is a good one.

At 1200 today I have an appointment with the doctor from the rehabilitation clinic as well as Milou the wound nurse.

This was the appointment I was dreading the most as I knew that Janneke the Dr was going to cut some hard skin off around the edges of the wound.

In order to stop myself lying awake all night thinking about it I took a sleeping tablet which worked very well.

The procedure seemed to take forever luckily I don't feel a thing nevertheless I was relieved when it was all over as it's not my favourite activity.

Janneke was very positive about the wound saying it was looking good and nearly healed up which was good news.

Hopefully trimming off the hard edges will help the wound to finally heal; it would be great if that were to happen at the same time as I get my new wheelchair.

Despite my increasing limitations I'm feeling very positive about the future and I'm looking forward to being able to get about again.

More Waiting.

Oscar Dominguez

 http://en.wikipedia.org/wiki/%C3%93scar_Dom%C3%ADnguez

The weather is still miserable, at the moment I can hear thunder, the clouds are dark and the sun came out like a last hurrah before a storm.

This afternoon I had a pleasant visit from Anja, we had arranged it when she was here two weeks ago to assist me with some paperwork.

Today we had intended to brainstorm how to get Amsterdam Council to install the air conditioning.

Yesterday I received an e-mail from my case manager informing me that the council had decided to give me one mobile air-conditioning unit.

When Anja telephoned Mrs Yildiz in order to get more information about this, she was told she did not work on Wednesdays.

Anja will telephone her again tomorrow morning and see if she can obtain more information from Mrs Yildiz then.

I'm curious how they will install it, maybe they think we have ordinary windows under which you can place a mobile air-conditioning unit and hang the extractor tube out of the window.

This is not possible in our apartment as all the windows go from floor to ceiling,

the mobile unit that we have does not work well at all because we can't put it under a window.

The only place Richie could find was next to the toilet door, he cut a round hole in the wall for the extractor hose.

The hot air goes into the toilet where we have the extractor fan running continuously, this makes the toilet unusable because of the hot air.

The other problem is that the extractor tube is not long enough for the unit to be put in the bedroom so it’s near the door.

Which means it is not as effective as it should be if we could install it correctly, it will be very interesting to get more information tomorrow after Anja’s call.

While Anja was here she got a call from Paul Loos from De Alliantie my landlords, who she tried to contact on Monday about the whole air-conditioning saga.

She explained that we've now heard Amsterdam Council was going to give me one mobile air-conditioning unit.

However we have no further information, we don't even know how or even if they will install it, Paul Loos asked to be kept informed.

More waiting hopefully some answers tomorrow and who knows there may even be a resolution in sight.

Welzorg Have No Care For Customers.

Firebird Suite, 1942.
Pavel Tchelitchew.
http://en.wikipedia.org/wiki/Pavel_Tchelitchew

No sooner had the Welzorg engineer Tijl left, when I got a call from Welzorg, about when they will be collecting my wheelchair, so they can install the new steering.

Instead of the promise made by Percy Bouman, that Welzorg would be collecting my wheelchair at lunchtime one day and returning it at the end of the next day.

That is what was agreed on 5^th November, they now want to remove it for a whole week, which is not acceptable, especially as its not a big job

The man from Welzorg tried to persuade me to say yes, so did my case manager, I explained to both, that this is not an option for me.

I won’t be pushed or persuaded that something that causes me so much discomfort would get my agreement.

Well there was no contest, I won’t put up with week in bed, I told them both, they were not happy.

They are trying to work something else out; I hope their new plan will be communicated soon.

Hate the way one is always left wondering what is happening, Welzorg never inform their customers, they like the profit nothing else seems to matter. 

A Pleasant Surprise.

Mountain Night, 1969.

David Hare.
http://en.wikipedia.org/wiki/David_Hare_%28artist%29

This morning we were pleasantly surprised by the support cushion being delivered by DHL as had been promised by Quattron.

Great to get it back today, I was delighted as I am so used to being let down by mobility aids suppliers and sadly by others too like my ex case manager, but not my current one who is excellent.                                              .

So today was a pleasant surprise for us both, good to get the cushion back, it has been adapted and seems to give me more support.

I shall test it out by using it and making a note of anything that needs adjustment, right now the support cushion seems to be good.

Which is brilliant, Richie had me propped up pretty good but could not totally recreate the support cushions.

So it as nice to have the huge cushion back today, it has been expanded at the sides which is good, as before it was modified the cushion kept slipping away which meant I  would keep flopping over to the left.

It not pleasant to find myself slowly collapsing, sometimes I have ended up lying on my left side.

Despite the support cushion Richie still has to adjust me, the cushion helps but can’t hold me rigidly in place, it is good though as it allows me to sit and write.

Use My Time And Energy To Enjoy My Life.

Lesbia Vent Dumois.

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

This morning Jacqueline, my case manager called me to talk about my air condition application.

Seems she had spoken to somebody from the department that gives the permission for such applications.

Apparently last week they already decided on a negative response, this was before I had even sent in my appeal.

I hope that they look at my appeal with an open mind, but they seem fixated on us having blinds as well as awning.

Blinds won’t work here because our windows are floor to ceiling, we have 11 such windows and we do not get much direct sunshine, not after 10 am.

Jacqueline says I should monitor the temperatures and include this information with my application for next year.

Oh well I shall put it out of my mind and not let it dominate my life, I have let that happen too often now,

It’s been good to think things through, to realise that getting worked up and upset is a huge waste of my time, energy.

Getting upset about things that I cannot influence or change is not what I want to use my time and energy on, I want to relax and enjoy everything I can enjoy.

I Will Appeal This Decision.

The Snake Eater, 1987.
Victor Reinganum.
http://en.wikipedia.org/wiki/Victor_Reinganum

 

Yesterday’s post was that communication is important; sadly not everyone thinks the same.

On Friday, I received 2 letters, one from our landlord with a new appointment for them to inspect the apartment.

We had an appointment on 31 May, no one came, no one bothered to call  and even the letter with the new appointment had no apology.

Making a new appointment was not easy; there was no understanding that an appointment between 8 to 12 midday was not ok for us.

Got one between 12 to 16, after I explained my situation, I was told a note would be made to come by at 14.

Strange after receiving 2 appointments for 14.10, I could not make one for the same time.

I mailed MOZAAK asking for their reasons of refusal; they phoned to say I should phone the council for this information.

After hanging on the phone for more than 30 minutes I filled in an online form, then I heard from my case manager what the reasons were for refusing my application.

 Apparently its because we do not have blinds/sun awnings, that’s why I was turned down, how they help me on a hot night, when its too hot for me to sleep, I do not know.

They did not even contact my doctor, although they asked for my permission to approach her for information.

Mozaak seems to have even ignored their own doctor’s advice, who said temperature has a huge effect on people with MS.

I will appeal this decision, hopefully successfully.                            

Sunny Monday.

1952.
Isidore Isou.
http://en.wikipedia.org/wiki/Isidore_Isou 

Today began abit better than yesterday; Richie crawled straight into the bathroom and soaked his feet, then had a shower.

Afterwards he could hobble around reasonably well, which was abit better than yesterday.

I hated seeing the pain Richie has been in recently, it has meant we have not been outside.

Really hoping that my darling Richie’s feet get better soon so we can go out, I have been noticing that I really need to get out.

Quite desperately, especially as the weather is so pleasant right now, nice that it has been so sunny and dry.

I got a letter from MOZAAK, who are dealing with the application for airco that they need another 8 weeks to decide.

Which will take us to the end of June, sounds like if I am lucky I could get it near the end of summer.

Amazing seeing as this was applied for by my case manager and occupational therapist.

I think I shall see if I can find an airco unit for next to my bed, as I can’t wait to hear the decision in July.

Yesterday Was Not The Day That We Were Expecting.

Frida Kahlo (born Magdalena Carmen Frida Kahlo y Calderón;[2] July 6, 1907 – July 13, 1954) was a Mexican painter.[3] She painted using vibrant colors in a style that was influenced by indigenous cultures of Mexico and European influences including Realism, Symbolism, and Surrealism. Many of her works are self-portraits that symbolically articulate her own pain and sexuality. Kahlo was married to Mexican muralist Diego Rivera.



Absolutely shattered today, we were about to go to sleep, Richie folded the duvet over to check whether he needed to move me, if I had shifted over in the bed.

We were both very tired; I was on the verge of falling asleep, when I heard Richie say that I was totally wet.

As soon as the duvet was not on me I felt intensely cold, not surprising since I was drenched in urine, and I was very wet and smelly.

Only smelt and felt it there and then and not before, no wonder I had felt so cold all evening, even after eating

Seems the catheter tube and come out and urine had drained into the bed instead of into the bag.

A rotten surprise at 1.30 in the morning, especially as we had stayed up late to see Dizzi Rascal at the famous Roundhouse on the Electric Proms on BBC 2.

Had enjoyed seeing his performance, it was very good, we were both surprised at how good the performance was.

And then we were really shocked that sleep was not going to happen, certainly not before yet another shower.

Richie had to get me out of bed and take me into the shower, which was starting to warm up when we finally got there.

Then he removed my top and showered me thoroughly, my t-shirt had also become soaked in urine too.

He dried my torso and put on a clean dry and pre-warmed t-shirt and then he carefully showered my bottom and legs.

Then he applied cream and put on a clean, warm pair of thermal leggings and got the hoist around me.

Finally he got me back into bed and after checking that all was still ok and the tube had not come out during being hoisted back into bed.

The really horrible thing was that it was my second shower, twice the work for Richie yesterday.

Just when he was getting me out of bed in the evening, I started to have a very large poo, an upsetting experience.

One that Richie always makes it much easier for me by getting me washed and clean and dry and dressed without any additional stress.

Nevertheless it is a very unpleasant event for us both, and extremely smelly and another reminder that I do not have as much control as I used to.

Especially with such a good diet full of fibre, have been eating alot of mangos recently as well as oats and dates.

Horrible to be reminded once again how handicapped I am these days, glad that I do not cry anymore when these things happen.

I am very glad that Richie does everything he can to take the stress out of the situation, something he is very good at doing.

Today we are both very tired indeed, it was 4 am before the light was turned off and it seemed minutes later when we both had to wake up and face the day.

Despite being exhausted we still had to cope with all the pre arranged appointments like my physiotherapist and the meeting with my new Case Manager Jacqueline Janssen.

Seemed to go well, I think that she will be a good Case Manager, she certainly could not be any worse than the one I have had.

That was the woman who ignored my requests for some action is taken to give me more support in the new electric wheelchair.

And the woman who once asked me to let her know the amount of rent subsidy one was entitled to as a handicapped person.

I had asked her and she said she did not know the answer, but could I let her know when I knew the answer, as she was regularly asked this question.

Always felt like I was my Case Managers, Case Manager, think Jacqueline Janssen will be different, she will I feel be a good one.