Busy living

I've so busy living I haven't had time to write about it! That's a nice way to be I feel.

So what has been going on for me? Some really positive things certainly.

- I've had a huge weight loss. I keep checking myself out in shop windows.

   22kgs off. Don't you think it's a big improvement!

- My hip replacement has been a phenomenal success. I have been able to run on it up until an   incident that will discuss later. I don't even remember half the time.

- I've been using a lot of self-talk to beat down my MS -"Shut up, I don't care if you make me walk like Frankenstein's monster, we are going to complete 5k or die trying." Haven't quite convinced it to let me eat normally or remember anything but at least I have regained a small amount of control.

- I've nearly finished my NZIM certificate in management. Just working on a group project. Doing OK for one who does not play well with others. Once it's over I'm through.

So those are the positives and now what about that incident?

Three years ago I was merrily running along when I stepped off a curb and was hit with a searing pain in my right ankle. It did not improve and after many battles I finally got to see an orthopedic surgeon who agreed that the split perineal tendon should be repaired and duly wrote off to ACC to say the same. This was the period of the unfortunate degeneration excuse and the poopoo heads said it was due to degeneration due to age and they would not pay. I had a new job and just didn't have the wherewithal to fight so I decided to just let nature try and do the repair.

Nature appeared to do an OK job until last year when I stepped in a hole while walking Millie

There it was, the same pain! My GP referred me to the orthopedic clinic at Greenlane. I had the usual uncomfortable examination and an x-Ray which was inconclusive. So I was booked for an MRI and then seen once the results were in. Yep, split tendon. So I was fitted for supports and orthotics and sent off for a steroid injection since the MRI also showed some arthritic changes.  The jab did nothing so six weeks later I trudged back to clinic to report. Only to discover that that was a good thing since it meant the pain was more than likely due to split than the arthritis. 

The next step was surgery and there were a couple of options. I could have the ankle fused which would kill the arthritis as well as having the tendon repaired (well one removed and it's remained stitched to the other). The down side was a reduction of movement in the joint. The other option was just to do the repair and see if that solved the problem. After some discussion we chose option number two.

Yesterday I got a call to say they had a cancellation in preop clinic and would I like the space. Certainly, I would.

So today I went along. I met with an anaesthetist but not the one who will be mine, naturally, because this is the public system and there is no real sense to it. I pressed home my desire to have a regional anaesthetic rather than General due to my MS and what issues it could cause. It's in the "we'll see" box. Then I saw the surgeon, who after examining my foot and making me repeatedly stand on my sore foot while I moaned and groaned, came to the conclusion that my high arches put me at risk of ankle instability and I supinate. So in addition to the tendon repair I'm having a calcaneal osteotomy where the heel bone will be cut and moved towards the outside and held there with two big ol screws. 

She felt the osteotomy would be necessary at some point regardless and it may as well be done at the same time so it meant only one period of six weeks non-weight bearing rather that two. I agreed that that sounded much better to me. So hopefully after six weeks non-weight bearing and then four weeks or so partial weight bearing I'll be doing much better and less likely to pop a tendon again.

So in just over three weeks on July 3rd I'm booked in. I've had to cancel a whole lot of courses that I'd enrolled in for July but hopefully enforced inactivity will result in a book or two. You have got to look for the positives.

My service to you is constantly developing medical problems so they can be blogged about for your information and pleasure. Remind me to tell you about my surprise diagnosis today.

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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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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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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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.

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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Congratulations...it's MS

The absolutely wonderful Fiona, MS nurse extraordinaire, came through and I got an appointment with neurology. Even better it was with the neurologist I wanted (is it anal to have a preferred neurologist?).


The appointment was today and after reviewing my history the Doc said yes it was MS. So I am not neurotic despite what a number of physicians have thought in the past! The fact that I have developed at lisp in my 40s is not regression to childhood, when I think food is going down the wrong way - it is, I haven't had to give up marathons because I'm old - my legs are dodgy,I didn't fall down the stairs three times because I'm clumsy. It's all because I have MS!


So now I'm in the system and we're begging Pharmac to let me have interferons - at a cost of $1322.89 for a months supply! Then if they say yes I have to man up and give myself a sub cut jab every second day! I based my choose of interferon on shortest needle (you can have a weekly dose but the needle is a mean long intramuscular beastie), coolest auto injector (it rings like a cash register when you're done!) and lesser number of jabs a week (every second day vs daily). It apparently makes you feel like the after effects of a wine binge so it'll be bedtime jabs for me. Plus I get to mix it! Love chemistry!

I had to do a 500m walk assessment which resulted in a referral to physio and orthopedics for a foot brace! Apparently they are no longer ala Forrest Gump and more discrete - not sure how discrete a foot brace can be! When i googled them they looked anything but!


There is also the issue of stairs - I can't leave the house without ascending stairs. So it may mean a move in the future. The irony of buying a house with stairs because that was what Danae wanted and now she's left home has not been lost on me.  Hopefully Simon reattaching the stair rails may be a short term solution.

So now it's really a waiting game! This is an individualized disease so no one can tell you what will happen. My only proviso is if I have to have a wheelchair I want a really cool one with cool wheels in a cool color! You can get attachments things so you row rather than push the wheels. Apparently there is a huge wheelchair tennis community - now if I could just play tennis it would be great! 


I refuse point blank to ever use a walker. A) they are aesthetically not pleasing, B) they make you hunch over and C) they are not me.


I've been using my crutch and that's been working well - better than the very attractive floral walking stick I also have. It means I can still get around Sylvia Park which is imperative.


So here I am, diagnosed, labelled, disabled. Now can I get a parking permit!

My history

Here is a brief rundown of the past events that are now setting off alarms in my poor head.

In the mid 90's while training as a midwife I had an episode that lasted two weeks or so where I developed very slurred speech and had difficulty moving my tongue. It was investigated by physical exam and I was diagnosed with a post viral syndrome and sent on my way. Since then I frequently felt less mentally adept and sometimes quite foggy.

I started to suffer from an overactive bladder - the key in the door syndrome - when you gotta go you gotta go.  But after 5 children the pelvic floor probably wasn't the best. I recently addressed this through medication. Medication I initially suspected caused the blurred vision - it dries your mouth out so maybe it dries your eyes too.

I started to get quite achy about 7 years ago and worried that I had arthritis. A visit to a specialist left me with the diagnosis of Fibromyalgia which I have basically treated by ignoring it! I was achy, had brain fog and my hands felt tight most of the time and I am always tired.

When I was pregnant I developed Cholestasis of pregnancy and had many blood tests. One thing that showed up was the presence of Epstein Barr Virus antibodies.  I had glandular fever as a pre-teen following on from mumps and the mysterious post-viral syndrome so this is not surprising but many people with MS have higher than normal levels of the EBV antibodies.

Six years ago we moved to a new house with stairs. I slid on the stairs 3 times in quick succession - damaging my tailbone quite significantly. It became a major mission to descend the stairs and I still have to really concentrate.  Not helped by the removal of the stair rails for DIY.

I have often choked on my saliva and taken food down the wrong way. It's a transient thing but worried me enough to get a referral. Of course the day of the investigation it showed little more than a slowing/pouching at the back of my throat but nothing going into my lungs - I could have told them that without the machine! So I continue to choke and sometimes spaghetti dangles into my lungs and I cough madly and sometimes a small amount of food feels like (and I'm convinced it does) gets into the top of my lower respiratory tract and I choke and cough and feel like my lungs are seared.

I have irritable bowel syndrome though it's not been too bad for a few years - could be learned management!

I knew fibromyalgia responded well to exercise so I pushed myself to run.  I was enjoying it and getting quite a bit of zip when one day I managed to slip off the kerb (bit like stairs!). My foot felt like a knife had gone through it. This sent me off on a whole nother tangent - (ACC blaming my split perineal tendon on degeneration rather than accident because I'm so old! No payment for surgery so it's been two years and it is finally coming right due perhaps to the Steroids).

So running was pretty much out the door. But I could still walk my dog......until about 5 weeks ago when I suddenly struggled to make it up the driveway and could only hobble 300m down the road. It was a combination of weakness and pain in my right hip which has been part of my life since I was a teen.

The off-shoot of no exercise was weight gain! So I started a weights program which has helped a little but my lifting weights have dropped significantly. Where I could do 15kg per arm I'm now struggling with 5kg! I'm also too damned tired!

There have been other things which I was really not aware of until I began reading a book today and thought "Holy shit! That's me!". I 'see' sounds - I get bright flashes with loud or sharp noises.  When Simon gesticulates with his fork I feel like it is grabbing my eyes and pulling them. I can get vertigo on very small heights (anything more than 3 steps up a ladder is no go! I splash cups of tea and coffee all over the place.  I love hot baths but my legs get really tired trying to keep me from slipping under the water! After 15 minutes all the fun has gone out of it. It is also pretty hard to keep the book from falling in the bath (Can't have a bath without a book!) as my hands feel swollen and start to ache.

I can't keep my legs and arms still for more than 15 minutes - try 45 minutes in an MRI machine without going insane - I cried and would have screamed but I'm too socially constrained.

So I have a whole hodge podge of symptoms which have been investigated in isolation and never really linked.

Maybe a neurologist will pull it all together but based on my past experience I'm really not holding my breath. If I wasn't such a sceptic I'd really have little faith in medicine! I'll tell you one thing if I find out I have MS and I'd have had a better prognosis if it had been investigated more fully at the 3 crucial presentation points I will be up that postal tower pretty damn quick!

Why I changed the direction of my blog.

On the 10th of July 2011 I woke up and couldn't see properly out of my left eye.  The vision was really blurry and dark.  Within an hour it came right. The next day it happened again and lasted a bit longer.  On the Monday it lasted all day but the blurry area became narrower as the day progressed. On the Tuesday I made an appointment with my optometrist because it just wasn't right.

The optometrist carried out a battery of tests including peripheral vision testing, colour recognition and the usual acuity tests. Based on the results she told me to front up at the Eye clinic at Greenlane Clinical centre the next day.

The clinic opens at 7:30 but I couldn't make it until 8:30 so faced a bit of a wait. That was fine, I had a book. After about 3/4 hour a nurse called my name and took me off for triage. It then transpired that the Optometrist had written the date on her referral as 8/7/11 so they thought I wasn't particularly compliant. After explaining that 'no, I actually saw her at 4:30 yesterday' things changed.  I was placed in the acute waiting room - a dimly lit area. 

After a short wait I was called by a Reg who repeated most of what the Optometrist had done but did mention that optic neuritis which was what I had can be associated with MS!  Normally this wouldn't be a biggie but my past clinical picture made alarms go off in my head (I'll go over this in my next post). 

A HS came in to apparently take my history as I was headed for the Eye Ward for possible steroids.  Near the end of this history taking another Reg came in to explain a bit more. She skirted around MS but I told her the previous Reg had mentioned it (I'd also googled on my iphone in the interim!). She then explained that Steroids can speed up the healing of my eye - it would also heal without them - and may delay onset of MS in people developing it by 2 years. So did I want to proceed with the steroids - that would be a yes.  The next suggestion was an MRI. I wanted as much information as possible  so agreed it would be a good idea.

So I was admitted to the ward on the Wednesday for IV Steroids - only to discover it was 3 days worth! Oh well a change is as good as a holiday so I settled in.  The steroids were foul. I had nausea, a metallic taste in my mouth, insomnia and general malaise.

On the Friday my MRI was booked. This was one of the most horrible experiences in my life. It was not the small space that caused me distress, it was the being totally immobilised and bound across my chest so tight it caused paroxymal coughing which naturally made imaging difficult. I had to keep my eyes closed but my eyes tend to dart about even when closed so again I was not popular. The whole torture took 3/4 hour and if I never have another one it will be too soon.

I returned to the ward for my final dose of steroids and my discharge. I was given an appointment 13 days later to come back.  When I said it seemed along time to wait to find out if I had MS, the nurse said there was no mention of it in my notes - you'd have thought that would have raised a flag but no. I was sent home on 16 days of Prednisone - 60mg for 14 days and 10 mgs for 2 days. 

The oral steroids were only slightly better than the iv. I've been not particularly hungry (a plus), grumpy, barely sleeping, swollen and foggy. It does seem to have helped with muscular pain but my eye stills feels like there is a smear on my glasses - but I'm not wearing any.

So today, 13 days later I returned to the Eye clinic. The wait wasn't too bad as I had an appointment. I was seen by another Reg and took this as perhaps a good sign because surely if there was anything bad on the MRI the boss would be seeing me. She did all the tests and then said she was going to discuss it with the Consultant. There was a long wait and then the consultant came in.

She explained that things seemed to be improving - I see dark orange rather than light orange for red out of my right eye now. My vision had supposedly improved but that is probably only due to the fact I had my contacts in rather than my not-good glasses.

"So, do you have any questions?"

"Ah, yes! What did the MRI show?"

"Well, it showed inflamation of the optic nerve and there were a few plaques.  It means you are likely to present again with optic neuritis"

"By plaques do you mean lesions?"

"Yes but you haven't got any of the other signs of MS"

"You mean like weakness and foot drop and episodes of slurred speech?"

"Ah yes! Do you have those?"

"Yes, I had slurred speech years ago and I had weakness and foot drop prior to the neuritis" (this had all been told to previous Regs and HS)

"Oh! Well we had better refer you to a neurologist. But we won't need to see you again"

And that was it! Out into the cold with no idea when I'd have an appointment or what to do if I was concerned!

The documentation must be terrible! I can see how people slip through the cracks. I could have presumed the MRI showed nothing and gone my merry way.

So I am now blogging to document my journey - be it to the world of MS or status quo.