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!

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