Tuesday, December 4, 2012

This year's Christmas Cake

Chef: Mary Browne as heard on This Way Up Saturday 17 December 2011
Tags: Christmas, condensed milk, christmas cake
Adapted from the 'Sweetened Condensed Milk Christmas Cake', contributed by Mary Browne to New Zealand Guild of Food Writers' The Cookbook (2000). This recipe was an updated and metricated version of a popular Christmas cake of the early 1970s. Mary revised it from a hand-written version, found in a coverless cookbook from Oamaru, to satisfy the many requests for the recipe from family and friends who appreciated the 'quick-mix' method and the cake's excellent flavour and moist texture.
Mary's youngest daughter makes at least three before Christmas each year because her husband loves rich fruitcakes and each one disappears before the official celebrations begin. As a result time runs out for icing and decorations.
125 g butter
2 tablespoons golden syrup
1 x 400 g can sweetened condensed milk
4 eggs
1/2 teaspoon vanilla essence
1/2 teaspoon lemon essence
1/2 teaspoon almond essence
1.2 kg mixed dried fruit
1/4 cup rum, sherry or port, plus extra 2 tablespoons to pour over cake when cooked
1/2 teaspoon baking soda
1/4 cup milk
350 g bread flour
Line the base and sides of a 20 cm-square or 22 cm-round cake pan with a layer of brown paper followed by a layer of non-stick baking paper. Preheat the oven to 130˚C with a shelf in the middle or just below.
Choose a large-enough saucepan to hold all the ingredients for the final mixing. In it, melt the butter, golden syrup and sweetened condensed milk over gentle heat, stirring constantly until the butter has melted. Remove from the heat.
Beat the eggs with the essences until light-coloured and thick.
Place the dried fruit in a bowl and add the 1/4 cup of rum, sherry or port. Stir to mix thoroughly. Dissolve the baking soda in the milk. Sift the flour.
Fold the eggs and essences into the mixture in the saucepan. Add half the fruit and half the flour. Mix gently. Add the remaining fruit and flour. Add the milk mixture. Stir gently until thoroughly combined.
Spoon into the prepared cake pan and spread evenly. Bake at 130˚C for 3–3 1/2 hours. (See hint below on how to test when a cake is cooked.)
After baking, sprinkle with the extra measure of rum, sherry or port. Cover loosely with foil and leave to cool completely before turning out. Wrap in greaseproof paper and store in an airtight cake container or wrap in foil.

This is a seriously moist and delicious Christmas cake

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Thursday, November 29, 2012

Shocking news!

Not really shocking news, more like totally out of left field unexpected news that is incredibly great.

I had my check up with the surgeon today (more later) and he said "No running before April" so if I promise not to jolt my hip before then I can run and jump in April and I shall at the very least be jumping with joy. Of course MS is the real decider on the running but if I can do so without pain or spasming all over the place I shall try to work my way up very slowly to 5k.

As for the appointment, well I seem to be doing beautifully. My perceived leg length discrepancy is due to my hip previous being scrouched up at the front and now it has been put back where it belongs it feels too long. Apparently all markers are in the right place I'm just curving my spine all over. So I'm going to get physio and hopefully that will get me back on track.

I can apparently do everything I want at the gym as long as I hold off on running and bouncing until April.

I also had the Gastro appointment. I'm for a gastroscopy in the next fortnight or so. apparently it is high priority, pity my appointment wasn't. Anyway they'll have a look at how everything works and if I have a constriction they'll put down a rod to stretch it. Only a small risk of tearing it!

Now I just need to get my night guard to stop my teeth grinding since the antispasmodic I'm on doesn't seem to cover that and my wisdom tooth removal and I'm done.

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Tuesday, November 27, 2012

Heading for the big 6

Tomorrow is six weeks post op - cue balloons! Cue dancing in the streets! Well maybe not.

I know the aim of having a hip replacement is pain relief and certainly the point at the front of my hip where the arthritis was killing me is improved. BUT my left leg is not happy. It is my perception that my right leg is significantly longer than my left. While I was on two crutches I certainly didn't notice it and on one it was barely perceivable but whenever I try to walk unaided I resemble Quasimodo.

I tiptoe on my left foot and as a consequence I've had plantar fasciitis, a sore back, sore calf muscles and my hip feels like the right one did. My right hip just doesn't feel right. It feels normal as in my type of normal - a hip that pops in and out of the socket if you think of doing anything. I'm obsessing that the Physio making me do weight bearing on my non cemented hip two days post op may have contributed to some slippage.

I've got an X-ray and surgeon's visit on Thursday so I guess all will come clear then.

On the positive side, I set a goal of being able to walk 1.5k before seeing the surgeon and I have a heaved that. It is with a crutch or a stick. But I set no limitations on it so it counts. I have also tried the driving thing and it worked. Being able to drive will save me having to walk up the mountain we call a driveway to go for a walk and also let me get back to the gym once I'm signed off so I can rebuild some leg strength, hopefully. My biceps have never been better after four weeks of double crutches.

And I can always dream of being taller if the left THJR extends that leg as well. Dreams are free!

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Friday, November 16, 2012

Cabin fever

It's been just over 4 weeks and I have severe cabin fever. I had been extending my walks but on the day I was supposed to start weaning off two crutches I ended up in severe pain despite not even venturing up the steep driveway so I haven't been up since apart from a sort walk.

I have possibly left the house 7 times since the op, possibly less. I am certainly developing sympathy for my tropical fish but at least they have company. It's a sad day when someone is complaining about work and you envy them. My sister has been my chauffeur to take me and A to get the groceries three times and we have coffee while he shops so yay for her. I've been out for brunch twice and to Mega Mitre 10 once (coffee was involved) and two dog walks so I was wrong, I've been out 8 whole times.

The evening walks in Cornwall Park haven't eventuated because S has been working late so by the time he's had dinner it's too dark. The dog gets out more than me!

I burst in to tears today because there wasn't enough time to go and collect some plants before S left for a long run in the Coromandel. It's a bit tragic when the proposed highlight of your day is a drive over the harbour bridge. It's even more tragic when missing out on it feels akin to missing a trip to Disneyland.

So my advice to anyone post THJR would be a) don't live down a steep driveway and b) make sure you have plenty of people available to help you get around.

There was nearly a disaster the other day when the fish heater seemed to be not working. Normally it would be a quick trip to the pet store but not when you're becalmed. It means hoping someone will get home in time to get to the store before it closes. In the end the heater was fixed thanks to Dr Google but I've got everything crossed that we don't have a repeat over the next three days, that none of the boys get sick and that the gas doesn't run out on the stove and that no other minor inconvenience occurs that becomes a major when you're not mobile.

Right time for a change of scenery. I'll move from the sofa in the lounge to my bedroom.

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Tuesday, November 6, 2012

I got my jeans on! (Spoiler alert!)

In life you should celebrate the small victories and I'm celebrating one. Today, less than three weeks post op I got my jeans on. Not skinny-lie-on-the-floor-and-shimmy-in jeans but jeans none the less.

You can only spend so long in leisure pants before you start wearing ugg boots with them and start heading down the road to PJs to the supermarket. OK I have to confess! I have done a few walks up the driveway in my pjs (they also look like sweatpants) and a long nightie, which in all fairness was a maxi dress before I decided it was not a sight I wanted to subject anyone to.

So now I look more like a normal respectable person. Now if I could just figure out how to get my Batman converse sneakers on I'd be set. Elastic shoelaces just really bring down the whole adult ensemble.

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Sunday, November 4, 2012

Getting along more than adequately

With the three week mark only 3 days away I'm pleased with progress. I'm still on double crutches, still another 11 days until I can start 'weaning', and I still get becalmed in armless chairs but I'm getting there.

I'm now only taking the occasional panadeine, usually when I wake up as that's when I hurt the most. I have started on Ferrograd so hopefully I'll start looking a little less like a vampire soon. So basically I'm down to 4 tablets in the morning, with aspirin and 5 at night with Baclofen.

On the MS side of things, I have an appointment with Gastro. It's the morning of my Xray and surgeon visit so it's looking like a pretty busy day. I should be able to drive by then so at least I can get myself to the Gastro appointment unaccompanied.

I was thinking today about which is the most useful aid. It is actually a draw between the grabber (everyone needs one!) which is a dressing, grabbing, pointing machine, and the toilet chair! Now stay with me on this. It might seem at first a toilet chair serves only one obvious function but no! It serves the purpose of it's nomenclature true, but it also serves as a seat to sit on when dressing after showering, a place to clamp my grabber while in the bathroom (otherwise you need to carry a second grabber for when your first grabber inevitably falls on the floor) and a pseudo walker to get me from where I put my crutches to the toilet. If allowed, I think it would also serve as an excellent clothes horse. You see it is a thing of many uses.

I'm noticing a bit more flexibility (within hip precaution guidelines) of my operated leg now when I do the exercises. I read a good hint to do them when you clean your teeth so I've extrapolated that to whenever I'm at the basin. Drink enough and you certainly up the number of work outs you do!

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Thursday, November 1, 2012

Dressed down

Two weeks has passed...oo rah! So I have been able to remove the evil diabolical TEDs and my feet can now breathe. I am making an effort to elevate them once a day to prevent swelling and may be showing mild signs of hypochondria with regard to signs of DVTs.

I have also been able to remove the dressing. I celebrated this by nearly passing out. I put it down to low Hb, leaning at a strange angle with my head down to avoid breaking the sacred hip precautions and the dressing sticking just a little. After a sweet cup of tea and a lie down I was nearly back to normal but I celebrated by buying some iron tablets because I'm really not rocking this vampire look.

so here has how it's changed over a period of 10 days. A vast improvement! The kicker is that with hip precautions the only way I can see my badge of honour is if I take a photo of it. Roll on the day when I can once again twist and shout - well currently if I twist I do shout, but you get my meaning.

Monday, October 29, 2012

Watch that cyborg hip!

I'm thinking I have been very lucky with my THJR. I've had no swelling to speak of, no real pain and no bruising apart from a small bullseye around the drain site. I can easily walk with Simon and the dog and could probably even manage our super steep driveway if I had to but I'm not going to push it.

I've worked out how to lie on my left side, I call it my whale dance, so my back gets some respite. I'm still quite tired but that's thanks to the anaemia. I hope one day to be able to sit down and not feel like I have a phone in my pocket.

I did manage to do something stupid today - we'll see if I dodge the bullet. I bent over (a big no no) with straight legs ( even bigger no no) and felt the characteristic sensation of a hip joint about to part company. Being experienced in this happening with my previous original model hip joint I quickly corrected my error and I'm hoping I didn't do any damage to muscles or joint. That's the trouble with things going so well - you push the envelope. I even tried wall walking in the middle of the night and that was stupid and uncomfortable. I now swear to stick to my directions as advised by those wiser than myself and hopefully me and my hip joint replacement will be together for more than 20 years.

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Thursday, October 25, 2012

Happy one week anniversary

My bionic hip and I have been together just over one week and we're still happy. Though the hip is a little demanding. It insists I sleep on my back, don't bend over or kneel.

It's amazing how far I've come in a week. Last week getting in and out of bed was difficult. I hadn't even faced stairs and the thought of getting in a car was frightening. I can now easily get in and out of bed even if it is neither graceful nor elegant. I go up and down stairs easily repeating" Good goes to heaven, bad goes to hell". I can stand without my crutches longer and extend my leg further back and sideways when doing my exercises. I've tackled the steepish path to the letterbox and only needed a brief nap. I can pretty much dress myself apart from the TEDs and it only takes twice as long. I even cooked a meal and an emergency batch of cookies last night.

So things are going well. The Brufen is upsetting my stomach but I found some leftover omeprazole so hopefully that's old news. I have cut back my paracetamol/codeine intake. I haven't had anything close to pain - it is truly strange!

Now I'm counting down the days until I get to remove my manky dressing. Then my Frankenstein leg will be complete.

Based on how brilliantly things have gone I don't intend delaying the left hip. Hopefully this time next year I'll be a double cyborg. W00t!

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Sunday, October 21, 2012

Going to the place the cyborgs belong.

Day 4 post THR found me at Armagghedon - the comic book/geek fest dressed as Oracle in my trusty wheelchair. I only managed a couple of hours but it was nice to be able to make the regular pilgrimage.

This morning I discovered that it is pretty much impossible to put compression tights on by yourself with only the use of a sock aid, shoe horn and grabber without getting seriously close to popping out that joint. I had taken the TEDs off overnight and intended wearing them during the day and having a rest at night but if I don't have a stocking assistant then I can't make sure I have them on before I get up so I think I'll be wearing the 24/7 for at least two weeks.

I seemed to have got the hang of getting into bed easily. I drag myself diagonally up the bed so my leg follows and end up easily positioned. The car is a bit more difficult. The guidelines say to get in from road level not from the curb. This is probably fine when you are getting into a family saloon but I'm trying to get into a Landrover so I end up trying to vault up. So now I try and find a curb and then pop my butt on the seat, lean back towards the driver's side, bend my knees and pivot around to get my feet into the foot well while still maintaining a greater than 90 degree angle. I have a slippy sheet on the seat to help with twisting.

I've been doing my leg exercises like a good little trooper but a little leery about weight bearing on my right leg while swinging the left one around.

I'm amazed how little pain I have. Much less pain than post- caesarean and I'm basically sitting on the wound. It must be magic. The only bruising I have is a small one by the drain site. I also have virtually no swelling. Amazing!

I'm still easily tired and had to have a nap after Armagghedon. The sudden hit of tiredness is amazing. I just suddenly find my eyes shutting and my head lolling right in the middle of doing things.

I do have the toileting and showering pretty much down pat. I had to use a disabled toilet today and it did not come close to my portable seat. I certainly agree a shower chair, a raised toilet chair and a grabber are essential tools. It's amazing how much stuff you drop when you can't bend over.

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Saturday, October 20, 2012

The cyborg has left the building

Yesterday, two days after surgery I went home. There are certain parameters you need to meet to be discharged and I put on my over achiever's hat and did them. Part of the reason I was toileting and showering without assistance was thanks to the good ol MonSter. Basically when I need to PU I need to do it NOW! And can't really wait for someone to answer my bell. I also need to go a few times overnight because hip discomfort wakes me up and i notice that sometime in the near future it might be an idea to go to the loo - in fact why not now and it seems obsessive to call them in too often.

After surgery they want your bowels to work so laxatives are prescribed, particularly if you're on morphine. That would be fine but the medication that is failing to help my swallowing is working doubly well on my lower GI tract so when their powers combined I was impelled to rush to the bathroom quickly and repeatedly and again there is no time to wait for the nurse to be free. So toileting myself was pretty much ticked off day one, I could roll myself from my back to my left to sleep the night directly after surgery, I was hiking the corridors from the afternoon of day one and did stairs on the morning of day 2 - so much easier than I had expected!

The surgeon and anaesthetist came round at 6:45am on day 2 so I had to do something to fill in the time before breakfast so a shower seemed a good idea. When armed with a grabber no clothing item can defeat you.

So I basically negotiated staying until 7pm to get as much pampering as possible before going home to a house devoid of nurses, healthcare assistants and kitchen staff. There was a misunderstanding over drugs and I nearly ended up going home on just aspirin but the most excellent nurse queried this. When you fill in your initial registration form you have to list the drugs you're on and I of course listed the pain relief I had prescribed to take me up TO the operation day. This was interpreted as my having mountains of medication at home and needing nothing. The surgeon came and offered Brufen and Panadol. I saw his Panadol and raised him Panadeine. So I've come home with aspirin, Brufen 800mg and Panadeine. Not quite the cover of the nice morphine drugs but better than nothing.

Now I am trying to adjust my surroundings. It is easier getting into a double bed than a single one so I'm not missing the electric bed too much. I've showered with the crazy spinning shower chair. I've even watched some tv sitting on a chair stacked with cushions. I'm training everyone to not leave things in my path since I'm on the double crutches for another 3 weeks or so. My next progress marker is going for a walk - I have to driven due to our steep driveway. I'm not certain when I'll be able to surmount that but I will at least manage a walk in the park this afternoon.

So my recovery commences but for now I'm going to crash until its walkies time.

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Thursday, October 18, 2012

The cyborg has arrived

Yesterday was a major day. I had a right total hip replacement and it was an experience! Because I have my crazy swallowing issue the anaesthetist was not keen on me having a general. So I had a spinal. Normally they give you a sedative but because of my MS she only wanted to give me a light no effect dose. So while my hip was sawn and reamed and hammered and glued I lay there listening to Queen on an iPod! We will rock you will never be the same.

It was actually really nice arriving in recovery compis mentus. I just hung around being monitored and watching all the other poor souls struggle out of their general fog.

The spinal took two goes because I had sharp pains shooting down my left side on the first attempt. Once it was all set I felt like I could still feel my feet. I asked if it would get stronger and the anaesthetist said it would. Then she announced that they'd started so I could relax because I was a bit worried I would still feel things. It was really strange - like some one was constantly pushing and pulling my feet. The only strange time was at the end when they pulled on my legs to check things were lined up and I moved up and down. The mild sedative was enough that I could hear all the sawing and hammering but feel relaxed. It didn't make me forget anything.

Because I'd been curled up in the fetal position for insertion of the spinal my brain told my body my legs were curled up on my chest. They felt really tired! I also had a spasmy right arm that shook madly and made people keep trying to cook me.

The anaesthetist had advised me so some studies that found a worsening of symptoms with epidural anaesthesia so when I couldn't feel anything in my right leg for 7 hours I was a little concerned. I definitely couldn't do my bed exercises in recovery or for some time on my return to my room.

The left leg started to get some sensation back after 5 hours but nothing major. My right leg finally got sensation back this morning.

I lost quite a bit of blood and my haemoglobin went down around 90. They hmmed and haaed about a transfusion. Finally at 10pm the nurse got really excited. I had a drain in but not just any drain apparently - I had a reinfusion drain and I had reached the magic equivalent of one unit of blood in it that could be put back into me! Freaky! I just made the 6 hour cut off.

My blood pressure was low but I felt fine. After breakfast this morning my drain was removed (hurray) and the Physio came to help me ambulate. I got up fine and went a reasonable distance on two crutches with no problems. Then when I was in sight of my bed a black hole appeared and sucked me in. The Physio yelled for a seat and held me up for what seemed like ages. Suddenly I couldn't hear anything and apparently just sat looking at the Physio. After a while everything seemed back to normal so we decided to finish the trek. The black hole came roaring back and this time I couldn't hear and couldn't speak. I had to be dragged into my room on the chair.

Very weird experience. After a cup of tea and some sweet dunking biscuits life returned to normal. I was escorted to have a shower and since I was a good girl I was allowed my nasty catheter out. So I left the bathroom feeling human again.

I've managed to go to the loo on my own so I think we're doing well. I still have to have oxygen due to the morphine in my spinal so my nose isn't that happy but everything else is. My biggest problem is I have to have a pillow between my legs when I get on and off the bed and my weak MS quads struggle to hold it. The last time I got on the bed I felt a slight clunk so I think the process needs some tweaking.

So now I'm a cyborg with sexy white tights. Such an attractive look. Now I just need to recover and learn to cope with stairs and then I can go home. Maybe Saturday ( today is Thursday). Yay!

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Sunday, October 14, 2012

Cyborgs don't feel pain. I do. Don't do that again

Three sleeps until I become a cyborg. I was going for the bionic woman angle but I just can't pull off the Jaime Summers hair toss.

Yep, on Wednesday my malformed acetabulum and femur head will be relieved of their duties. I will join the score of old age pensioners who haven't looked back since they had theirs done (probably taking those hip protecting precautions a little too far).

Thanks to the gift of MS I already have all the cool toys - toilet frame, shower chair (two because the OT who won't even consider recommending me for assistance towards a stairlift felt I needed a twisting one), sock puller and grab stick. Oh and my sexy crutches. Yep our beautiful new bathroom in no way resembles the communal bathroom at a rehab unit.

Just to make life interesting I've been given no information on preparation but good ol Google has helped there. Hence I now resemble a nervous marathoner days before a race. Woe betide anyone who has a cold who dares enter my air space. I will resemble a Sasquatch because you can't have any cuts or grazes on your legs from shaving. My wisdom teeth have decided now would be a good time to begin their annual pilgrimage along my jaw. Hopefully they will be on the return journey by Wednesday.

I have a bunch of attractive elastic waisted pants to wear. I think the slip on shoes will be such a fashion statement teamed up with them.

I'm hoping to be a really good patient and excel at my lessons so I can be released at the earliest possible point in time but it all depends on the MonSter. It may not like the blood loss, fiddling around with major limbs, bear hug rugs or simply being somewhere else. I don't like hospitals. I'm hoping this being a private facility it won't have the call bells which I always feel the need to answer hence never sleeping properly.

When I come home I'm pretty much confined to barracks for some time since I can't drive and can't walk up the driveway. Pity I can't use the time to do some painting or floor board laying. It'll have to be the Living channel and rewatching Buffy for the fifth time. I love Buffy.

So I'm a sittin and a waitin and trying to be positive. I'm not convinced by the promises of no more pain cos duh I have MS but it should be nicer pain than the bone grating hip popping stuff I've got now.

Now I just have to figure out how I can convince them to let me out in time for me to go to Armaghedan dressed as Oracle cos sometimes must never be missed.

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Saturday, September 15, 2012

Following on on my controversial blathering

It's always interesting throwing around a hot potato. The euthanasia debate, if it can be called such since there seems to be a desire to try and push it back into the cupboard, is such. Once again I will state I support the right for safe legal euthanasia, it's not for me but I believe it should be an option for those requiring it. I do wonder about the funding though - seems getting Pharmac to pay out for any drugs is quite a challenge.

If we were to legalise euthanasia what exactly are we legalising? Usually the debate raises its head when some one "self euthanises". (Euthanasia is medically agreed to be the termination of life by a doctor at the request of a patient). From looking at countries where euthanasia is legalised it seems to me that often this is not the act that has been legalised. Would legalising it actually mean family members and friends would no longer be at risk of being charged with assisted suicide?

It seems to me it's a bit like the whole civil union thing. We'll give you something like what you've asked for but not the actual thing.

In the Netherlands they have a Termination of life on request and Assisted Suicide Act. It states the criteria that must be met and requires a second doctor (see, it is medically driven) to agree. Even when all requirements are met the doctors can still be the subject of investigation.

Under current Dutch law, euthanasia by doctors is only legal in cases of "hopeless and unbearable" suffering. In practice this means that it is limited to those suffering from serious medical conditions and in considerable pain. Helping somebody to commit suicide without meeting the qualifications of the current Dutch euthanasia law is illegal.

Switzerland is a slightly different story. In Switzerland, assisted suicide falls under Article 115 of the Swiss penal code. As such it is ‘a crime if and only if the motive is selfish’. What is important in Switzerland is motive, not intent. All assisted suicides in Switzerland are video-taped. Once a death is reported to the police, the police, an officer from the coroner's department and a doctor all attend the death. At this time family and friends are interviewed. If a selfish motive cannot be established, there is no crime. I'm not sure how that would work with regard to wills in favour of family members (as most are) or insurance payouts to cover the cost of burial etc - death by suicide is currently excluded on many if not all insurance policies

So are what would the New Zealand law look like if it eventuates? I'd be guessing pretty much in line with the Netherlands rather than Switzerland. In my opinion the Dutch system is less stressful for family because they are absolved of any involvement but I really don't know.

Who knows what will happen. we've moved from civil union to looking at legislating equal rights to marriage for single sex couples so maybe we'll see it as a more expedient decision to make the big step and follow Switzerland. I'm sure sensible advocates will certainly be reading any proposals very carefully to look for any tricky phrases which are subjective rather than objective.

I don't think all of the people are going to end up happy all of the time and if it eventuates it may be a smaller proportion than desired of some of the people who will be happy. Clear as mud?

Now I'll stop chasing controversy and go back to sunshine and lollipops.

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Friday, September 14, 2012

Different strokes for different folks

Today's New Zealand Herald's front page article (here) was about the discharge without conviction of the husband of a woman who 'euthanised' herself. I certainly agree that he should in no way be held responsible for her decision.

Euthanasia is defined as " the act of killing someone painlessly, esp to relieve suffering from an incurable illness" (Collins English Dictionary). Multiple Sclerosis is " a chronic progressive disease of the central nervous system characterized by loss of some of the myelin sheath surrounding certain nerve fibres and resulting in speech and visual disorders, tremor, muscular incoordination, partial paralysis, etc." (Collins English Dictionary). It is currently incurable but as such not terminal - tricky.

Rosie has PPMS - the mean type. People with PPMS do often progress quite rapidly to the point where they require mobility aids, often electric wheelchairs or mobility scooters. They may develop all the symptoms of MS. As people will tell you it's not MS that can kill you it's the consequences of the symptoms that can. PPMS does not appear to be slowed by the use of interferons so most treatments are around helping people with PPMS cope with the disease. It is progressive and seems to be a fairly linear degeneration according to the neurologist I saw last month.

I read through the news report and felt there must be more as Rosie's biggest complaint was she was having to drink her yogurt because her tremor made it difficult to get her spoon to her mouth. There was a link to the court document and I hoped that it would provide more information. At this point I was of the opinion that we would certainly be better to have legalised voluntary euthanasia under medical supervision.  Thus families would not be subjected to charges of assisted suicide or, at the very least, be able to be with their loved one as they died rather than having to find their body. This would also prevent the granny-cides, which people are often certain will happen.

The other point for legalising euthanasia is that it could be carried out when the person requesting it had reached their limits rather than requiring them to do it while they still can. Interestingly, at this point in writing my blog I had a tremor which made this entry disappear and created 3 drafts - this one and 2 blank ones!

At the time of her death Rosie's symptoms included "tremors that made it increasingly difficult to feed herself, difficulty walking, incontinence, and pain." She was "in pain, and losing the ability to walk and take care of herself. She hated the indignity of her condition and made the decision to end her life." Her decision was made sometime in 2010 and carried it out just after Christmas 2011. This is the only information provided on Rosie's symptoms so they may have been significantly worse or she may have had more debilitating ones as well.

This makes me think about the people I know with PPMS who self catheterise, use wheelchairs and scooters and have carers. These same people also go to music festivals, concerts and overseas holidays alone. It shows that different people can cope with different things. Certainly refutes the saying we're only given what we can bear.

I have noted that many people who commit suicide say they are doing so because they are a burden. I don't know how having an important person missing from your life and having to explain the loss can be any less of a burden  than caring for someone you love. Again my opinion.

So how has reading this article affected me? Firstly, I had to explain to my son why someone with MS would do this. Then I looked at my current situation. I am unable to eat currently so I've looked at the alternatives. I know that if it doesn't improve there are feeding systems that can bypass the whole problem area. At present I would rather have a PEG than leave my family grieving. That is my opinion. I struggle to walk and constantly push myself (thank you marathon training) and use a crutch and occasionally a wheelchair but I would rather be in a wheelchair than leave my family. I am taking so many tablets I rattle but I hope that they will help me feel at least a little better. I have speech difficulties that mean I struggle to converse sometimes. My memory is shit and this makes writing difficult. It does mean I regularly get to enjoy movies I've already seen and books I've already read with new eyes. I can't see clearly out of my right eye but my left works. I have no feeling in my feet but that has it's advantages.  The biggie for me is I can not work in the job I love because the governing body deems me not worthy of being a midwife as I can't function in all areas. The euthanasia I'm considering in that case is not my own. But I personally cannot see a point at which I'd say pull the plug.

So I support legislation making the decisions some people may wish to make legal but I am not interested in taking up the offer and I would sincerely hope no one suggests it to me. I would hope it would only be legal at a point where quality of life is intolerable rather than inconvenient. And I would hope that the month around Christmas would be a no euthanasia zone because that is supposed to be a time of joy and togetherness and not to be spoilt by intentional death as opposed to accidental but that's just my opinion.

Friday, September 7, 2012

Wobbly hedgehog syndrome

I just found out that domesticated hedgehogs are prone to a disease similar to MS. Now I'm just going to tell people I have wobbly hedgehog syndrome.

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Tuesday, September 4, 2012

When big man speaks others listen.

To date I've had 3 referrals to Gastro. One from a service coordinator, one from an allied health professional and one from a neurologist. Two either didn't get done or were ignored and one was auctioned. Can you guess which one! I've noticed this is also the case with my occupational health referral. What does it say about our health system where referrals can be ignored?

Any way I've received a letter from Gastro saying we've received a referral and we'll see you sometime in the next 6 months, don't hold your breath, if we decide it's important we might see you sooner rather than later but don't ask when. Any problems see your GP. Surely if your GP could deal with the problem you wouldn't need them. Coincidentally the occupational therapy referral receipt received two weeks ago said much the same and so we wait.

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The Days of our lives

As sand through the hour glass so are the days of our lives.

Today was follow up X-ray day for my hip so that meant a drive to South Auckland where my excellent surgeon (one hopes) operates out of. The parking is excellent and the staff are all very nice. Good the films on CD so not such if I can do a comparison. Now I just need to cross everything that he agrees to proceed.

The bane of my life at the moment is the dysphagia. Everything takes a stop-off at the top of my oesophagus - it's the Dhubai of my body. I end up feeling like I have constant carotid pressure on my throat. It usually takes at least 3 hours for something a small as a tablespoon of rice to continue it's journey. When cup-a-soup sticks you know things are awry. Luckily coffee always works so I can always become a caffiened up anorexic. This really is taking stomach stapling to the extreme.

Got lots of social things coming up and it's hard making the call. It all depends on whether I've had my bionic surgery by then. A lady in the park was very impressed with the quality of her replacements and that was 15 years ago so I'm really expecting to be Jamie Summers. The not driving for 6 weeks may be a problem. I certainly won't be strolling up the driveway. Maybe I need to get a cart built and Millie can tow me up.

Haven't had any communication yet from Gastro. I hope it's not another case of lost or not done referrals. Not that I'm really dying to have a tube shoved down my throat to see what's happening. Though I do prefer that tithe other end of the GI tract.

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Tuesday, August 28, 2012

It never rains but it pours

MS has brought out my inner ranter. I may become Disgruntled of Auckland in the letters to the Editor soon. It been an interesting couple of weeks. The bathroom renovations continue on. The upstairs one has finally been finished, sort of. This was the one with the accessible shower. See below!

The lip is nearly 60mm so a bit of a drag. The doors are now on - regular size put in not a wider one. Ai caramba! So now the downstairs one is supposedly going to be lower and wider but I think it'll just be a step down into it. Apparently writing things down is not part of the spec.

Despite the dramas it does look lovely. It's nice to be able to plug the electric toothbrush in and the bath is a thing of beauty. Now we just have to survive the renovation of the bathroom and laundry. If our new neighbours have anything to do with it I may not!

Our tradesmen all come after 9 apart from 2 occasions to reduce inconvenience on a shared driveway. On both occasions the neighbour had a hissy fit about being blocked in. She ignored the tradesmen who had parked there to come and ask me not to park in her driveway because she's always running late delivered very much in the tone of voice a teenage girl would be proud of. I don't park in her driveway so readily agreed. So where do I park? I park up our long driveway ( the one I struggle to get up) so the trades can get in. They try to finish as early as possible but of course if you start late you sometimes finish late. Tonight resulted in another hissy fit with gestures and hysteria as the electrician was blocking the driveway - he was in his van and trying to leave! I'm not certain what more can be done apart from ordering her a nice bulk supply of Valium.

Stress makes symptoms worse so I've ended up wobbly and tearful. Fortunately the neighbour up the driveway has said I can park in her driveway so at least I won't have to scale the driveway every day. At least they are just short term renters so we don't have to face years of animosity.

I have also had a neuro appointment. It was with my usual neuro's fill-in and he was excellent. The main discussion was my swallowing difficulties. He's arranged a referral to Gastro to see if it is another health problem, because MS and hip dysplasia are not sufficient, or MS related. He says it's rare in MS but I read perhaps 30-50% of people with MS have swallowing difficulties! Although I think they are more in the food transfer from mouth to throat. Anyway if it is unrelated that's apparently a yay(why I don't know!) because if it's caused by MS it means a diagnosis of progressive MS and apparently I can expect a degree of symptom worsening at the same current rate. Don't you love this disease!

On the bright side, if I keep progressing like I am my memory will soon be like a goldfish's and I'll get to meet new and exciting people over and over again.

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Monday, August 6, 2012

Becoming even more of a hippy chick

My MS is pretty much on the back burner at the moment, overshadowed by a hip dysplasia. My right hip joint seems to have forgotten it is a ball and socket joint. My extra lip on my acetabulum is preventing me from lifting my leg more than a couple of centimetres and my dodgy femoral head means I can't bend over so dressing appears not dissimilar to Houdini escaping from a strait jacket.

I have some high powered NSAIDs - Brufen - but it no longer touches the pain. The Ortho's plan had been for me to take twice daily doses for two weeks and then cut back to once daily. Had the good of my steroid jab not been counteracted by my joint popping out and causing a new round of inflammation I'm sure it would have been an excellent plan. Instead I was popping Brufen like lollies in the States and now I'm home I'm trying to cope on one tab a day and basically becoming a bear with a sore head (or hip). September follow-up seems so far off.

If I go back in September and he wants to keep putting off surgery so I can get by on one surgery for my lifetime then there may be bloodshed. My quality of life is severely compromised not by my chronic incurable debilitating disease but by a malformation that can be fixed. To deny this would be cruel. It would vastly improve my quality of life - I could walk, bike, climb stairs, do up my shoelaces, get in a regular car comfortably, walk the dog, do the food shopping and who knows what else. Of course once it's fixed I'm sure I will be more aware of my MS!

My major MS problem at the moment is cognitive. I have the memory of a goldfish, I feel slightly confused all the time and sometimes am not certain whether I dreamed something or it actually happened. Not a nice feeling - it's like having dementia but knowing you have it.

The bathroom renovations in our house are on-going. I am starting to think they'll take 3 months all up. I struggle with the stairs and the only functional bathroom is downstairs. Six people are trying to coordinate the use of one very small shower room/WC and it is not a pleasant room at the best of times. I stood beside the shower base in the main bathroom (it and the bath are the only fittings in the room) and tried to lift my leg high enough to get over the lip - not happening easily. I stressed the need for it to be negligible in the consult but I think people don't realise that saying you can't lift your leg means exactly that not that you can't lift the thigh to horizontal with the floor. I keep telling myself it'll be fab in the end but I'm starting to wonder.

I have another neuro appointment this month. My regular Dr is on parental leave so it'll be with Dr X. I'm not certain of what the point is but we'll see. They'll probably try to tempt me with the latest drug where you get a month free and then have to pay. Sounds not dissimilar to what they do with meth, crack etc. I will have to play the unemployed card I think.

So I'm holding out for major surgery and probably have rose tinted glasses about what the outcome will be (a guy around my age had it and then did IronMen - not supported by the medical community). It can't make things worse really though. If I can walk that will be fantastic. Though I'm not certain they realise how far I'd plan to walk. I will certainly try to avoid running but there is no guarantee of anything in this life. Hopefully my left hip will continue to behave and I'll manage to rebuild the muscles on my right side to support my hip

So I'm close to becoming a glass half empty person.

Surgery or bust say I

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Friday, July 27, 2012

The heat is on

Two and a half weeks into my US odyssey I am still alive.
I have survived being stranded by my shuttle company in San Diego - tears were involved. I was rescued by John and John, two Mexican shuttle drivers, who went beyond the call of duty to get me to my flight to Las Vegas.
I survived the heat of Vegas - it is an incredible heat. No wonder no one leaves the casinos.

I spent 5 days exploring San Francisco, which was fun. I think it marked the turning point for my poor hip though.i saw all the sights, toured all the museums, at all the chowder and then was delayed leaving because VP

Biden was in Oakland and my plane couldn't take off to go to SF.
I now have this TSA thing sorted. My favourite point was when a seasoned traveller told me I didn't have to take my watch off. He left his on but we were in the line for the old school detector ( as opposed to the submissive surrender machine) so what do you know - he set it off!

I also did Universal studios and a movie at the Graumann's theatre in LA - Abraham Lincoln - vampire hunter. It was about the experience is all I can say.

The end is in sight. I've had 2.5 days at the Disney theme parks here in

Anaheim and am now enjoying the RWA conference. Lots and lots of American writers - volume levels may be hazardous to your health. I met Karina Bliss at lunch. What are the odds of having a fellow kiwi sit down next to you at lunch when there are over 120 tables and 8 women at each!
I am struggling to walk and sit. Oh and to lie down. I'm ODing on my pain drugs and using lots of heat (I think my gel pack causes distress to the TSA - my bag has been inspected). I am not looking forward to the long flight home in a few days. I got swollen feet in Vegas after 2 flights and they got worse in San Fran so I obsessively moved them the whole flight to LA. Worked!
In a country supposedly constantly looking for tips you would think I would be a target - helpers coming out the wazoo. Wrong! I have had to buy another bag,partly to accommodate shopping, but mainly to balance out my stuff so my arms don't get too tired trekking around airports and as somewhere to put my crutches.

So arriving anywhere means balancing everything just so and hoping nobody gets in my way. I paid the skycap at San Francisco so I wouldn't have to go through the whole print your boarding pass at one location, get your luggage weighed at another and then drag it over to TSA to be checked through. I have been priority lined twice in all my travels apart from Alcatraz where they were brilliant. So I am doing the independent disabled traveller thing whether I like it or not.

So I continue to penguin on but looking more like a zombie penguin at present. Maybe I should change the name to lurching on.

Location:W Katella Ave,Anaheim,United States

Sunday, July 8, 2012

Going on an adventure!

Tomorrow I set off for 3 weeks in the US! I've got a buddy along for 10 days but then I'm on my own. This trip was planned prior to my diagnosis - 18 months ago! Now I will get to see if my plans have worked out.

I have one less worry - not being on injectables anymore means my carry-on is not totally taken up with needles with no room for anything else. There is still a large bag of pills but they are not too cumbersome. I have had to collect my next repeat early so I'll have enough so now I have bottles everywhere! They all have to be in my carry-on to avoid the risk of them going to Norway and me going to the US - don't laugh - a friend is currently in France luggage less.

I have hmmed and hard over taking my wheelchair. It is weighing up the risk of relapsing and totally losing the use of my legs vs having to heft it around for probably only 2 days of use. I think I've made the decision to leave it. It was sort of helped by my travel companion saying "I'm not pushing it." I still struggle with hills and kerbs so I need anyone with me on board with helping. I have checked into hiring over there and it is possible but not that cheap. I would also probably want to store it rather than take it to San Francisco (hills!) and that would be $120! At ComicCon they have loan chairs you can have for 2 hours - probably dread transit chairs! There are scooters available for hire at Universal Studios and disneyland so I figure if necessary I'm covered. Also the state of my bike spokes after flying makes me reluctant to trust anyone with my chair!

I will be taking my crutch and splint. I've also had a moderately successful steroid injection in my right hip to help reduce inflammation from my hip dysplasia which has flared with the MS. So I guess I'm as ready as possible!

Thursday, April 5, 2012

Thanks for nothing

This week is probably not one of my better ones. I am now unemployed since the Midwifery Council is so rigid they must have pokers up their butts. I am really disappointed that the body responsible for overseeing a supposedly caring profession can't have a little wiggle room around practicing certificates. I'm a bit over saying how if I was a nurse I'd only have to maintain my practice around the area I work in rather than the whole spectrum but midwives have to be it all. So now I'm looking for a job that will pay as much and fit in with my MS as well as my previous job did. Good luck to me! I'm also in a bit of a grump today because I foolishly went to anoither physio. I have always been a bit of a sceptic - only one physio has ever earned my trust and he was a true magician. I went to a neuro physio who was supposed to know about MS. She obviously made up her mind I was an unmotivated layabout as soon as I walked in. She thought I didn't walk far by choice and repeatedly said we'd have to work on my core because it'll be weak. I do a seted total body workout because it allows me to do 45 minutes of exercise but she thought it'd be much better if I stood to do some exercises. Since I can only stand for 5 minutes then I feel it would really add no value. After assessing my walk and seeing I was weaker on my right - can you say duh!- we progressed to floor work on my core where I nailed a plank - did you not realise that a total body workout would cover my TOTAL body! Apparently if I take up nordic walking I'll be able to throw away my crutch - it's a miracle! Can you say snake oil! Not to mention telling me to change the dosage of my medication for my spastic legs - not a good look! I have had a meeting with Taikura Trust who do the referrals for community supports and housing modifications. Hopefully something will come out of it - a speech language consultation to sort out my swallowing issues and an OT to recommend something to help me cope with stairs would certainly help. Preferably options that take into account my reduced means. So I guess I'll go back to my usual position on the sofa eating fried food and watching Jeremy Kyle. That's how I felt the physio viewed me. I know what I'd like to do with the nordic poles! I now resolve to reduce my contact with the allied health professions. I am just not a candidate for these faith healers.

Thursday, March 1, 2012

Just sitting and waiting

The result of today's neuro appointment:

  • Off Copazone - it makes me swell up and we don't know why so off the copaxone come I. Not hugely distressed. I may regret it down the track but it is a means to an ends.

  • Not on Tysabri. I did not want to go onto Tysabri anyway since we do not have JC antibody testing yet. But apparently you need active lesions which I don't appear to have. But we did have a discussion that went along the lines of "I don't want it" "You can't have it but if you could you'd want it." 

  • Return visit in 3 months to see what happens - before both the neurologist and MS nurse go on maternity leave!

  • If I have a relapse then I get another MRI - oh joy! And the Tysabri convo! Since DMDs prevent relapses then not being on one means this is more likely to happen. With my luck it will be optic neuritis in my left eye and I'll end up partially sighted!

There is the option of Gilenya - the oral drug - but Pharmac has not come to the party so it would be $800 per month - I only have a job for another month so definitely not an option!

So not much changed! I did have my eyes tested and confirmed what I knew - I can't see out of my right eye. 

Oh well - life trundles on!

Wednesday, February 29, 2012

I've seen inside my head and it's not pretty!

Isn't it such a joy that MS is not the same for any two people! There are so many little symptoms and signs that everyone has a different story to tell. Forums are full of people asking "Does anyone else have.....?" Once you have a diagnosis of MS it becomes a constant process of wondering is this caused by MS or something else. There are the obvious favorites - optic neuritis, spastic legs, slurring speech, insomnia, cog fog, muscular weakness, fatigue that feels like an elephant just sat on you, the MS hug.....but others pop up to - urinary retention, - did you know that their are little mini catheters the size of a lipstick - I didn't until I joined a forum for women with MS - difficulty swallowing, headaches...the list goes on!

So you get a handle on your disease symptoms and you know what's normal for you. It is perfectly normal for me to slump sideways when sitting and when standing or walking too long. I know if it's hot I lose most of the sight in my right eye. I cannot remember much. Simon says I have man brain disease. It is not a pleasant experience. I also lisp and my tongue stops working if I talk too long. So if you're getting the picture of a drunk Castillian you're getting it about right.

I have not had relapse-remission since being diagnosed but based on my history I've obviously had a few relapses and remissions back to pretty close to normal in the past. Now I'm sort of in limbo. Limbo is among other things the borders of Hell - very apt I feel. I have not got worse but I have not got better. Since it's been the same since August I am aware that I may stay the same for some time or I might get worse and then either recover back to my present state, recover but not be as 'well' as I am now or just keep on pitching down hill. What a strange disease!

I am now on Copaxone. Once daily injections that are barely noticeable going in but hurt like hell a few minutes after. Copaxone is Glatiramer acetate -  noninterferon, nonsteroidal agent that is supposed to reduce relapses in people with remitting-relapsing multiple sclerosis. It has a nice list of side effects that I was told about but because I like to be an individual I went for one of the rarer ones - hugely odematous feet! The side I inject on is always the most odematous but I have cankles and my feet, which were quite ugly anyway, look revolting. This is not life-threatening - unless it is caused by my kidneys failing! - but it is not pleasant and it is hard to tolerate it in the hope that it will slow down the progression of a disease which has left me the proud bearer of a mobility park placard already. 

I voiced my concerns at the last visit to see my neurologist and she decided to try me on a 5 day dose of high dose steroids and decided that I should have another MRI. The steroids were oral methylprednisolone so I was able to have them at home and just be a horror witch to all around me. They didn't realize the protection an inpatient stay gave them! I finished them about 8 days ago and have seen no real improvement but apparently these things take time.

The idea of another MRI filled me with dread. I decided to go private - after why have health insurance if you don't use it. I'll tell you why! A 2 hour MRI and all the accompanying bits and bobs cost NZD2800 and our Southern Cross policy covers MRI's to a total of NZD1200 per year! Great if you want your hip or ankle checked but not if it's your brain and spine. Depite the pain of the cost the experience was so much better! I think the radiologist at Auckland must be a sadist because there was no need to strap me down like Hannibal Lecter! I spent my private MRI looking at photos of US national parks and listening to the Edge. I did have a mild sedative because I had thought I was going to be restrained and needed something to help me cope with that! They gave me weird looks when I told them I wasn't claustrophobic - I just don't like being tired down.

Two days later the results came in the mail! Beats the one month and having to ask what it said last time! I have no new lesions which is no surprise - I am the same not worse! I have a possible telangiectasia - that could be why I've started having migraines or it may be nothing! I have to now see the neurologist to see what it means. what she had better not say. She is a good neuro so I'm pretty sure she won't say anything dumb!

Now we come to why I had an MRI. I didn't tolerate betaferon - deranged LFTs, skin marking, itching, swollen sites.  I'm not doing so well on Copaxone - odema, swollen/red sites. So what does that leave? Well it leaves the drug that everyone gets really excited about because you only get it as last resort! A monthly infusion of Tysabri - a selective adhesion molecule which attaches itself to the damaging T-cells, it prevents a majority of them from crossing the blood-brain barrier and entering the CNS. And even if a few do get across the BBB and enter the CNS, Tysabri is able to migrate them away from the myelin, providing double coverage from the damaging T-cells. Sounds dandy, right?

Now for the risk whose name we dare not speak:  According to information released by Biogen Idec, as of September 1, 2011 there have been 159 confirmed cases of progressive multifocal leukoencephalopathy (PML, a viral infection of the brain that usually leads to death or severe disability) among people who have used Tysabri® after it became available for prescription in July 2006. AND 18%  of those who have developed PML have died (29 out of 159). The degree of disability in the survivors is a wide spectrum: at the milder end, some have recovered enough to return to work, and at the other extreme, some are confined to bed, requiring extensive assistance with activities of daily living, and others were in between this range. The overall global PML rate is now at 1.62 per 1,000 patients but it rises the longer you are on the drug – currently about 3.03/1000 for those on the drug for two years or longer. So sounds like small beans - 0.16% chance of developing a disease that could kill you. Well I have two problems with that!
1) MS has pretty much 0% chance of killing me
2) I specialise in developing the rare and unusual side effects.

So I know it's a really amazing drug - people report they feel so good on it. It seems to be a real tiger against optic neuritis BUT it can lead to death - and not a nice calm death, a really really nasty death.
Big promises!

PML is caused by the JC virus. However, many (probably most) people have been infected with the JC virus. It does not cause any disease in people unless conditions are just right. One such situation is in people taking Tysabri. In a small percentage of people who take Tysabri, conditions will be just right for the JC virus to proliferate and cause PML. So technically if you don't have JC antibodies you should be OK on Tysabri. But 
a) is this test carried out routinely in New Zealand?
b) if it's so common what if you catch it while on Tysabri!

So if they grin and say 'yay, you can go on Tysabri' _ I'm going say 'whoa'. I'll need a lot of convincing to go from I feel like shit but it won't kill me to I feel grand but I may die a nasty death.

Of course I may have failed the MRI test and it'll be a moot point and I won't need to worry at all!

Friday, February 10, 2012

Don't get me started!

There are two things that really irk me since coming under the power of the MonSter. Mobility parking vs parents with prams parking and account passwords.

Mobility parking: it's really good to have and it's great when you have struggle with a cane, crutch or wheelchair to be close to amenities. When it's difficult to get around and you're reasonably slow moving it is really helpful having a park close to the store, mall or facility door. But can someone explain to me why parents with prams need to be nearer the door than people who have difficulty walking?  I think parent with pram parks which are wider than normal so a pram fits easily between cars are a great idea - I've never seen any though. If there were a row of parks in the middle or second parking row back in a shopping centre carpark and they were wider than normal and had a painted walking strip leading to a safe crossing point I'd applaud the centre designers. But what I find is illustrated in this video:
Getting to a mobility park

I had just left the mall and was returning my car in a mobility park. Behind me are another 2 parks and across the lane behind my car are another 2 but the occupants must cross in front of vehicles to get to the mall.

Clause D1.3.6 of the building code states :
  • Vehicle spaces for use by people with disabilities, shall, in addition to the requirements of D1.3.5 [which includes appropriate dimensions, crossfall and slope] be:
  • (a) Provided in sufficient numbers
  • (b) Located to avoid conflict between vehicles and people using or moving to or from the space, and
  • (c) Easy to find as required by Clause F8 Signs.
I'm thinking this is not the case with these two!

And my other gripe -passwords!

My brain has lesions and my memory is now shite. I can't remember passwords. I do have them in my iPhone but my fingers are also a bit shite! If I ask for a hint it is often some abstract question which the answer I give never seems to be correct. Asking for the password to be sent to my email account is usually not an option - the option is to reset my password WITH A NEW PASSWORD that I have not used before - I now have to think up a new password and then I have to remember it to add it to my password safe and then I have to change it in 101 different locations. The impact of changing a google account password is so far-reaching it's unbelievable - gmail, youtube, circles and who knows where else! Youtube asks for my user name - ah but it's just tricking - it really means  my Google login - I need a stiff drink!

When I get a password wrong what do you think pops up! A stupid nonsensical word in italics with all the letters crammed so close that someone with great vision would struggle to differentiate between nn and m.  Try it with optic neuritis! All to prove I'm a real person - having failed three times it would appear I am not. Which really sums up how the world often perceives people with disabilities!

Thursday, January 12, 2012

Got me some more drugs!

I'm now trying copaxone which is not an interferon so shouldn't do the flu-like thing but may make me feel like I'm having a heart attack and also melt fat but not in a nice uniform way that would be worth paying money for - more a deep pit of despair sort of way! It just gets better and better! And it's daily injections! And it's injections - so unlike injections!

I was late for my appointment because the neuro clinic is on the 8th floor of the hospital through a warren of corridors and I am struggling more and more with walking. I mentioned this again to the nurse. She told me to arrive early for my annual assessment later in the year so I'm rested so I can walk 500m unaided. Ah, I can't! I feel a little like I'm shouting into a void as no one seems to be hearing me. If I continue to relapse it shows that the medication is not working. I keep saying I'm continually deteriorating but no one really seems to be thinking "Hmmm maybe the medications are not working" - I only escaped from the interferons due to abnormal LFTs and unsightly blemishes. The drugs will not cause any improvement, that's up to my body - stop inflaming and I'll remit or be remiss or something. I get that but the sales pitch is that I won't get WORSE. I am therefore it would seem to me they are not working. Perhaps this one will stop the march, one can but hope.

I'm also trying to figure out the logistics of traveling from LA to San Francisco to Anaheim and back to Auckland if I take a wheelchair. I guess I'm going to have to shell out more money and use shuttles rather than buses. Bit of a pain since come April I'm jobless! Oh life is just a bowl of cherries!

Monday, January 9, 2012

Got myself some new wheels!

Not exactly high-tech carbon fibre rigid frame with body hugging upholstery but still beats lurching and not being able to go anywhere. More a Land Rover Defender than a Porche I guess! I chose a folding chair because I wanted a chair I could chuck in the boot easily and to get a rigid frame that I can do that with would have cost mucho dinero. It's 9.5kg after I pop the wheels off (easy as!) so that's only 1.5-2 kg heavier than a rigid. I can dismantle and load it in less than a minute - haven't tried it blind-folded!

Had a good trial at Auckland airport today. I was able to get easily from the carpark to the terminal and not get run over! We went basically the length of the terminal twice with no problems whereas with my crutch and AFOs I'd have been exhausted. It pivots very nicely and fits easily into cafe table spaces. Tomorrow I'll tackle the marathon that is Sylvia Park!

Since I can still stand and move around with crutch or wall hugging then I saw no point in going through the funding process to get the chair covered. If I end up deteriorating then I can go for the bells and whistles carbon fibre like the Ti-lite ZX or a Melrose chair but for now I'm really pleased.

Sunday, January 8, 2012

Two months!

I have been a bit lax! Nearly two months has zapped by. Of course Christmas came in the middle and when you have MS Christmas can present some unique challenges which sap the old energy stores and leave little left for blogging (at least that's my excuse). 
Trying to get through a throng of people can be a challenge when your balance is not too good and you have an 'outrigger' - but then the crutch is good for 'accidental' ankle taps so it's not all bad.

When you use a single crutch then you're left with one free hand to carry all the shopping, get into handbags and search for wallets, carry cups of coffee and table numbers - sometimes all at the same time. I really don't know how people who use two manage! I tend to drop something regularly - in New World I once dropped everything! People are usually quite helpful. The problem being that the ground is just so far away! I no longer read books from the library that dwell on the bottom shelf for this reason.

My plaquey brain:
The lesions in my brain have turned my memory from most excellent to 'what were we talking about again'. So I might buy a present for someone and forget I've bought it and so buy another one. I forgot to turn the oven off when a cheesecake was in it slowly cooling - luckily it was on a low temp so not too much damage occurred when I discovered it 2 hours later. 

Extreme fatigue:
The whole shebang is just so dang tiring! I've actually subcontracted out the food shopping to my son. I write the list, he shops, I sit and have a coffee - what's not to love!

The one big plus has got to be the mobility parking permit! No more circling hunting for a park! There's usually one to be found and they do reduce the traveling distance incredibly.

Now Christmas and the New Year has passed so it's time to get sorted. I had some resolutions for 2012 but can't remember them. 

Tomorrow is a big day - it's wheelchair looking day. My mobility has significantly reduced and I'd rather save my energy for essential uses. A wheelchair to get around shopping centers etc will go a long way to doing this. It will be no use at home thanks to all the stairs and the "Garibaldi St' driveway. I looked at a motorized adapter for manual wheelchairs that might have got me up the driveway but it would have cost over 10000 New Zealand dollars + 399 to fit it + the cost of a flight to Sydney to get it! Excuse me but I can buy an actual electric wheelchair for a tenth of the price!

I'm starting on a new medication this month. I was taken off Betaferon after having hideous liver function tests, red itchy discolored areas on my legs and stomach and generally feeling terrible. It was hoped coming off it would make me feel better but I'm still not getting that remission! I start Copaxone which has had some pretty good press with the women with MS group I belong to.  It's not an interferon so hopefully I'll do better on it. I do feel like I'm bashing my head against the wall when I try to point out to the health beings that I am deteriorating not stabilizing or improving. It is sooo frustrating!

Today I said Simon could have my cherished Garmin - anyone who knows me knows that that is a sign that I've accepted this is how it's going to be and I'm not likely to be running in the Waitaks or doing any marathons on my own two feet anytime soon.

Well that was long and drawn out! Note to self - keep up the entries so they are short and sharp. Now if only I could remember to make a note of my note to self then maybe I'd actually remember!