Thursday, December 4, 2014

Hang on a minute!

Nearly three years ago I wrote to the governing body for my profession and said "Hey look, I have this nasty disease that can sometimes make me feel crap and are there any allowances you guys can make to my requirements to make things a bit easier?" The response was a resounding "no and further more, now you've told us about it you can't continue working until you get a letter from a doctor saying you are capable of doing so." Enter to stage right decline in morale.

I was gutted. It probably single handedly resulted in my ending up having to use a crutch consistently and a wheelchair very frequently. I was unable to find a job in another sector partially due to th fact I'd stepped away from my career path looked a bit dodgy. Either I had to reveal my MS at an interview or not discuss why and have them imagine that I had been stuck off. It was a lose-lose situation.

Then I took control of my MS and made great progress with fighting off the symptoms and the effects. I decided this was stupid. I could get back into my chosen path. So I sent off a request for reregistration and a letter from my GP. No go, it had to be from a neurologist. They were provided with my neurologist's name and where she practiced. Life went on, in the form of finally having the foot surgery I needed. I was in no fit state to work so I wasn't concerned. Then time really seemed to be dragging so I followed up. Apparently no letter from neurologist! So I followed that up. Apparently no such letter ever arrived! Back to the ruling body. They sent it but the address was wrong but it should have got to her.well it didn't but somehow that's not their fault.

So I sent an emailed copy and maybe the ruling body sent a copy too. Today I got an appointment for an assessment, eight months after I kicked off the process. The letter they sent to the Neuro made it sound like it was my idea to give up practicing! Oh well, deep breaths. Assessment went well, after all I'm winning the daily battle currently. We will see what happens next. Probably they'll decide I've been out of practice too long because of the delays that were not my fault and make me do return to practice course! Think of the money, think of the money.

One good thing that came out of the appointment was the possibility of going onto Gilenya, the drug that has recently come under Pharmac funding for eligible candidates. It prevents the immune system from attacking the CNS by stopping those overzealous activated lymphocytes from leaving the lymph nodes and heading out into the bloodstream. This is a different action to how the other DMDs work.

To qualify I need to have a diagnosis and have had a recent relapse. I had an episode if double vision in September that might be just that but I'll need an MRI to show new activity before I can have a request for funding put in. I'm not holding my breath as my MRIs seem very stable, hence no new symptoms up until the double vision. Cross fingers that it is the real deal and not an after effect from surgery.

In case the MRI does show new lesions we started the application process. That is, I had a battery of blood tests, but not the JCV test that has to go to Denmark! I had that one already and I was positive so no need to repeat. I also had an ECG. The neurologist filled in the paperwork so if it's Thunderbirds are go it should proceed a bit faster than if I had to have a return appointment to do the form filling. I just need to let the nurses know when I've had my MRI so they can get the results as soon as.

The other thing we discussed is my poor memory. As usual everyone tries to find a non MS related reason for it primarily. I'm convinced it is MS. The MS nurse is supposed to be trying to get me an appointment with the hospital neuropsychologist. I tried private but at $1500 it was too rich for my blood. Apparently he's in high demand so I'll just wait patiently.

My return to super athlete (chortle) is going well. I'm chugging along in the 5k program currently but very soon I'm stepping up to the 10k plan. I've been to two Achilles training sessions so far and they've been excellent. Lots of drills.

That's me rocking my Achilles t shirt and black fast moves Kori Kita running skirt. We did a bit of off road work just to keep the blind runners on their toes!

Training is huge fun but I do pay the price with the frostbite legs and the slurred speech until I cool down. My guide is the most use after training for ordering my coffee!

Tuesday, November 25, 2014

New shoes needed

I have been signed off by the physio and left with a few exercises to be carrying on with. I'm still balancing on a towel and am about to graduate to a pillow. I'm picking up 20 marbles - yawn, and  squishing my ball up the wall just a little.

I need to get another sort of shoe. My NewBalance were great when my feet were wide but now my shoes need to be narrower to stop my obsessive lace tightening. What a lovely predicament.

I have my specialist appointment next month so hopefully that will be permission to do what ever I want (and what I'm already doing!)

Monday, November 17, 2014

I'm the bionic woman

It's over four months since I had my tendon repair and calcaneal osteotomy and I now have a normal looking foot, sort of. I'm now used to looking at it and not being surprised by the straight inner line. I'm back in my running shoes and actually using them!

One of the things that I found most distressing about MS is it took away my leisure activity. I could no longer run events and get those coveted t-shirts or medals. So I decided to take back the power. My fight back against MS has been amazing and I'm at a fantastic point now. I've been given an amazing opportunity and I'm grabbing it and running, literally.

One week before this year's New York marathon a friend who organises the Achilles (disabled athletes) New Zealand team for the marathon was talking to my other half and he mentioned I'd filled out my application for Achilles membership but not sent it off. She told him to tell me to send it off and I could be part of the team for 2015! Done!

It was 53 weeks until the 2015 event so I have lots of time to do it properly. I needed a training program to get me from recovering from foot surgery up to finishing a marathon comfortably. I found an app for my iPhone that fitted the bill perfectly. - 5k-runmeter. I purchased the four in-app training programmes- 5k, 10k, half marathon and marathon. By following one on after the other it exactly fits into my training schedule. I'm now at week 5 of the 5k program and I'm finding it excellent. It runs pretty much in the background. You can play your own music - I listen to Spotify. When it's time to change from a walk to a run and vice versa a very correct Englishman tells me to "run" or "walk". It records the distance, calories etc just like other apps but having the coach as well is a bonus. It pairs with MyFitnessPal so you can check out calories in vs calories out. It also pairs perfectly with my Polar HR7 heart rate monitor so I can check out how hard I'm working. It's simply a band that pairs up with your smartphone via Bluetooth.

I went to my first Achilles training session on Sunday and it was Fun! We did fartlek, starting out at marathon pace and working up to 5k pace

I had an excellent guide who kept pace with me and didn't put any pressure on me. I was thrilled at how good I felt at the end. Then I lost the ability to talk properly as the MS fought back but a cup of coffee and a sit down and everything went back to normal. I have a bright yellowy Achilles t-shirt like the one my guide is wearing now so I'm one of the gang! Now if I could only run fast enough to catch those blind guys! Wow they can move! I'm really looking forward to the next session in two weeks. 

I also have two step up events to train for - a 10k on February 22 in the Cigna Round the Bays  and the half marathon at the Wellington Marathon on July 5th. I'm sure I'll manage to fit in a few more like Arthur's Half at the Legend.

I'm so excited and I just can't hide it!

Wednesday, July 2, 2014

I stop penguining for a while tomorrow.

My calcaneal osteotomy and tendon reconstruction is set for to low afternoon. I am not looking forward to the threatened pain - will not be once of those people that leap off the operation table yelling "I have no further use for these" as he's ripping out his lines."
If medical   can fix my foot and I can run in the future  then I bow down my head to this branch. I'm   planning on spending as much time as possible reclined with my feet up.

I'm hoping to eventually end up with a normal straight facing foot, not like the only I already have as evidenced by this photos.

Sunday, June 22, 2014

You can never have too many blogs!

I have decided that a calcaneal osteotomy is worthy of its own blog. So I'll be posting most of my CO related stuff over at

It's only ten days until surgery unless I'm bumped for some elderly lady's hip op. My foot seems to be clued in and has been protesting mercilessly for days. I guess it can be seen as a reassurance that the surgery is necessary.

Onwards and upwards.

Wednesday, June 11, 2014

Techno disability!

I changed the app I use for blogging on my ipad because I had previously not been able to add new labels and the number I had was limited. So I thought great, I'll up date my previous entries with labels. Duh! Rather than save I chose publish so about six previous entries have been republished today. Not my best day.

Fortunately I was able to resolve the problem and everything is back where it should be.

My thought for today is that I might have a separate blog for my foot. I'd probably just mirror/copy any relevant posts from this one but it could be useful if some poor fool googles calcaneal osteotomy blog and wants to avoid digging through all my other stuff. 

Of course if I do create another blog I will have to name it and that could be a challenge. Watch this space.

Tuesday, June 10, 2014

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.