Category Archives: disability

Living With A DVT

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April 9th

I thought to myself “I’m definitely going for a walk along the beach tomorrow morning.’

 

April 10th

‘Something is wrong and I think I need to go to hospital.’

 

5.45am

I work up with what felt like a pulled muscle on my left inner thigh. I got up and did some stretches, which made absolutely no difference. I went back to bed and couldn’t even stand having a sheet over my leg.

 

7.00am

I woke up Pete and said ‘Something is wrong with my leg, I think I need to go to a medical clinic.’ When I got up I saw that my leg was swollen to twice the size from my knee up, except I didn’t actually have a knee to speak of. I knew the day was going to be long so I insisted on a 30 second shower even though standing was a killer.

Then I discovered that I couldn’t even dress myself. Another reason husbands are handy.

 

7.45am

We finally got to a health clinic in Whangaparoa. I hobbled into the reception and they got me a wheelchair. I’ve never been so relieved. The doctor there wondered if Elephantiasis was rampant. My thought was ’Dude, that was a waste of your medical studies’. Even I knew what it was.

$98 later we were told to go to the hospital because they would get the blood results back faster.

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Rest of the Day

We got in pretty fast to the Emergency Department of the North Shore Hospital. The first doctor, who was from South Africa agreed it was probably a Deep Vein Thrombosis. Basically the rest of the day was having blood tests, waiting for results, getting injections, and having an ultrasound. Because it came on so suddenly and had been 5 weeks after I had flown they needed to check that the clot hadn’t broken off and gone to my lungs or heart.

The specialists told me I have a DVT that runs from the top of my thigh to my knee. It’s a super big one.

Just as I was to admit me to the hospital they realised my address was in another district, so I had to be transported to Middlemore Hospital. So, after picking up Liz, who had been waiting all day at a friends, we went through peak traffic to the other side of Auckland.

There we were at 7pm eating Subway while waiting for a bed.

Pete was flying out the next day to Canberra to do a painting job which couldn’t be cancelled, so we packed Liz off to Hannah’s and Pete went home to pack.

 

Since Then

Hospitals aren’t the quietest places to recuperate. Injections, more tests, blood pressure checks, bad food, noisy environment. Thankfully I was released the next afternoon once I had mastered injecting myself. All you do is make sure there’s no air bubbles in the needle, grab some fat, shove the needle in and push down until you hear a pop. Sounds easy right? Even after 10 days of this, it never became easy.

I left the hospital with crutches (on those for 2 weeks), lots of painkillers (drugs are awesome) and 6 months worth of blood thinners.

I made sure I wasn’t a martyr and took the painkillers religiously, not that I had a choice. The pain was incredible. I had to go and buy track pants because I couldn’t fit my jeans. I even had to buy bigger undies because mine were cutting into my swollen thigh.

Hannah made up for a leg rub of coconut oil, frankincense and a whole lot of other anti-inflammatory essential oils. Not sure if it helped, but it sure smelt good.

I came off crutches after two weeks, and just used them occasionally for another week. Thankfully I could still drive, but when Pete came back, he did all of the driving.

I have to be super religious about taking high dose blood thinners twice a day. I can’t skip a dose, and I have to have it with food. Even after 2 months I still forget to take them.

When I return to New Zealand in September I’ll go for a review to see when I can wean off the medication.

According to the specialists if I cut myself, I’ll just bleed more, but if I fall and hit my head, I need to go to the hospital immediately. I definitely bruise a lot easier and a wound takes weeks to repair itself.

 

Today:

I was told I need to wear a compression stocking, but what the doctors didn’t tell me is that I will have to wear it for 2 years. It’s quite warm here in Kenya, and dusty. By the afternoon my leg definitely swells up but nowhere near what it used to.

A weird thing is that my ankle, my knee and the inside of my thigh ache and burns. Mr. Google can’t tell me anything and I guess I’ll have to just live with it.

A really noticeable thing is my speed. I can walk for about 30 minutes before I have to rest and now I walk really, really slow. I have to swing my leg because it feels heavy. My goal is that by September I can start running, but I’m not super confident of that right now.

While it’s a major hassle, I’m really grateful the DVT happened in New Zealand. They have top medical care and it didn’t cost me a thing. If I was in Kenya there is a high chance that I might not be here today and if I could’ve got to a hospital, it would’ve cost thousands of dollars (which we don’t have).

People assume that everything is all better, but it’s not, but I am getting there. My leg aches a lot of the time, like 80% of my day and night.

So it will improve, and thankfully I have a patient husband who tries not to hit every pothole on the road (sometimes there’s more potholes than road) because he knows it’s painful for me.

 

Life is good, we need to make every day above the grave a good one – regardless of how we feel.

What a Year

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It’s been an interesting year in Kenya that’s for sure. It’s never dull and boring here anyway but this was a year we were all dreading in a way. Pretty much business went downhill, people weren’t paying their bills and no roadwork got done. Usually in an election year there’s plenty of roadworks going on to convince people that a party is worth voting for.

 

That meant our roads were in the worse state possible for a whole year. Last year we spent $3,000 on repairs and tyres alone. In one day two new tyres burst just coming back from the airport.

 

Earlier in the year I spent a few weeks in New Zealand with our daughter’s little family. Poor Pete had to stay behind and in the end I only spent 3 days without meetings. Not exactly great family time. It would be nice to actually go somewhere for an actual holiday and not have to mix meetings with it.

 

Before we came to Kenya I thought our travel days were over. What a joke, we’ve traveled more than ever before. In fact, sometimes I wonder if people think all we do is travel. But, if we’re not out there fundraising, then pretty much no money comes in for projects. Hence, we took a 6 week trip to the US. It’s an emerging market but will probably be at least a couple of years before we start making any money there.

 

We stayed in country for the 2017 Elections just in case it all went down the toilet. We ended up with another family staying with us who felt unsafe in the Kibera Slum. While it wasn’t as bad as in previous elections, there were still plenty of people rioting and burning buildings. One of our team told us how her neighbor was killed simply because her kids were hungry so she went to the market and was shot in the crossfire. After all that, they reheld the elections which didn’t change anything. Lots of money spent, lives lost and a low economy.

 

Our beautiful grandson was born in October and this time I was smart. I traveled to Australia for 10 days of fundraising and did nothing but be a grandmother in NZ. This time we all went. Pete worked for a good six weeks painting my cousins house but at least he got to see his family too.

 

Our biggest shock of the year was to find out that our daughter Liz was told she had to return to Australia or New Zealand to keep her Disability Pension. We were all so stunned because for the past 5 years we’ve had no problems and had no indication things were about to change. Thankfully my sister who lives in New Zealand was able to take her in but it’s not really the solution. For most people it’s a chance to ‘grow up’ by being thrown in the deep end. However, for someone with a mental disability they cope but don’t have the ability to grow. Thankfully we will see her in March when we go over.

 

So it’s a terribly quiet Christmas for us. We had all these grand plans to drive down to Tanzania as a family and then go on to Zanzibar. Without Liz though we threw that idea out of the window. Pretty much all of Nairobi empties out and it becomes a ghost town for a few days. Boring would be an understatement to describe Nairobi over this time. Thankfully we’ve been rescued by our friend Lucy who is like our daughter, who invited us to her university graduation celebration on Christmas Day.

 

2017 has been a full on year. While most people when they retire want to travel, I dream of staying at home! 2018 doesn’t look like things are going to slow down but at least I can’t complain that I’m bored!

When You Have A Disability

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This week I’m going to share what it’s been like for Liz while living here and also what it’s like for other kids in Kenya with disabilities.

Liz is classified as being mildly mentally disabled, along with speech and language disorders. That means she can’t produce sounds correctly and she has trouble sharing her thoughts, ideas and feelings. There’s no known cause and at this stage, we’re not worried about that as much as where we head to in the future. We tell people that Lizzie has Aspergers, because she strongly exhibits many of the characteristics of the spectrum.

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If you want some examples, she didn’t learn to do her shoe laces until she was about 17 and to this day doesn’t have the finger strength to do them tightly. Liz struggles when it comes to understanding her left and right. When talking with her, you will notice she won’t look you in the eye and sometimes blurts out something that has nothing at all to do with the general conversation.

When people look at Liz today they have no clue of her (or her familys) journey to get her to this point. The endless tests, reports, requests for assistance, occupational therapy, speech therapy, special needs classes – it goes on and on.

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There were two critical times in her life that deeply impacted us. The first one was when we were informed of her ‘condition’. We were distraught, and in those days there wasn’t as much information at hand (think pre-internet). The other time was when she was a teenager and could see her sister doing all the normal things teen do (get a job, have friends and a great social life). Liz was depressed for quite a few months and it was awful to go through. But go we did. With some help of some amazing youth leaders, life came back into Liz.

Then we moved to Kenya.

It’s not easy for a kid like Liz to make friends here. She likes to wear jeans and a tee shirt, and a tee shirt and jeans. If she has to wear a dress you think you were sentencing her to jail. She won’t ever be able to drive. It’s unsafe for her to catch public transport. She can’t get to youth events during the week because it’s a 90 minute drive each way.

And her volunteering options are slim.

For the past 4 years Liz has been helping at a pre-school about a 5 minute drive away. When we returned from travelling they said they wanted her back. One week in they said they didn’t need her any more. Let’s think about that one, you don’t want free labour????

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Now we’re in the very long process of trying to find somewhere else for Liz to volunteer. It’s hard to convince people that her amazing personality is a bonus to their workplace. Give Liz the same role day in, day out and she handles it really well. Okay, she’s not great in a crisis situation, but thankfully that doesn’t happen very often.

Last week we took Liz to Riding for the Disabled. I was hoping it could be something Liz could volunteer at. It was also something she went to when she was small so it was good to give back. The kids who came were from a special needs school run by the government. These were severely disabled kids. When they were carried off the bus, they had to wait their turn by being put in a car seat. To me most looked like they had cerebral palsy. The teachers were amazingly patient with them and everyone worked together to get the kids their turn on the horses.

When I look at them I worried about their future. Unless you have money here then kids like this will end up staying at home by themselves and maybe a neighbor coming by to give them some food while the parents are out looking for work. They will be neglected and end up with more health problems because of a lack of money. Some will end up being abandoned.

There’s no government support for them, nothing at all.

On the side of the road you’ll see the odd person in a wheelchair or placed on the ground to beg. On a couple of the roads blind people and their carers will be there with a cup in their hands asking for some change from drivers. For most families though, disabled children are ignored, not given hope, and alas they don’t have much of a future if you don’t have money.

I’ve had the privilege of meeting some compassionate people who are visionaries here in Kenya to transform the lives of children with disabilities. There’s a long way to go for these kids but at least it’s a start.

For Liz, her future is bright. I just hope the kids we see at places like RDA get the same chance.

liz