Posts tagged MS

The sting in the tail

A little bit of extra crappiness from yesterday – the MRI place slugged leigh over $500! The first place we went to charged something like $150 so this was a nasty shock. The receptionist claimed to have told leigh the price over the phone but I know she didn’t, because she didn’t speak to leigh, she spoke to me (pretending to be leigh) and there’s no way “That’ll be five hundred bucks” would not have grabbed my attention.

Some days you can’t catch a break.

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Protected: When there’s no prospect of good news

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Doctor’s appointments galore

Today we all traipsed off to the GP so leigh and hunter could see her. Hunter’s been complaining of her ears hurting from time to time, and leigh needs six-monthly blood tests to check her liver function (which can be impaired thanks to our friend Avonex).

I would have added myself to the appointments list if I could have, because I seem to be getting conjunctivitis (nice) and my eye was getting redder and redder, but by the time I realised how bad it looked there were another 10 or so people waiting and frankly, conjunctivitis sounds more inviting than an additional hour or two at the clinic. We were there over two hours as it was.

It turns out that both of Hunter’s ear drums are red and inflamed. I’m a little concerned, because in addition the bit of pain, Hunter’s hearing has definitely been affected. Leigh and I have both noticed lately that she either asks us to repeat things time and again, or just doesn’t hear us at all.

The doctor sent us home with antibiotics (which she thought was justified since both ears were affected) and we’re also to give hunter Demazin nightly for five nights to see if that helps – the GP thinks the problem is possibly at the nasal end of the eustachian tube and the Demazin could help clear things out.

We go back next Tuesday and if it hasn’t cleared up, we’re off to an ENT specialist, but I really hope the antibiotics do the trick. The prospect of there being a longer term hearing issue is just not that appealing.

Leigh will get her results next week too but we’re not expecting anything to worry about since she feels fine.

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Walking for MS Awareness

MS Awareness Week is coming up, and this morning Leigh and the kids and I signed up to participate in the MS Walk and Fun Run fundraiser in Sydney on 1 June (I think it goes without saying we picked the walk, right? “Fun run” has always sounded like an oxymoron to me.)

We paid an entry fee but we’re hoping to raise a bit of money through sponsorship, too.

We only registered this morning so I haven’t done anything exciting to our entry page yet (and probably won’t actually do much to it at all) but if you want to see it, it’s at http://sydney.mswalk.org.au/?KLHH

 Some MS facts

18,000 Australians have MS

Three times as many women as men have MS

The average age of diagnosis is 30 (Leigh was diagnosed at 33)

Five Australians are diagnosed every working day

If you’re a family member or friend we know IRL, stay tuned. We’ll be hitting you up for sponsorship some time soon! 

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A note on password protected posts

My posts about Leigh’s MS are mostly password protected, mainly because while they are my thoughts, it is her disease and I want her to have control over what she shares with people she knows. So, really, the password is there to ensure people we know in real life are not reading information leigh doesn’t want to share, unless she actively chooses to share it. I’m actually fairly comfortable knowing the posts are being read by people we don’t encounter in our daily lives.

A lot of people who come here are looking for information on MS. I remember when Leigh was first diagnosed how desperately I wanted to read about real life experiences. I didn’t want the statistics or the testimonials or the drug companies’ own spiels on what their medications did. I wanted to know how actual people dealt with this thing, from symptoms to side effects to dealing with the grief of it all.

I wanted to know HOW people decided what to do next and WHY they chose one direction over another. And I wanted to see that they got on with life and managed and coped.

I didn’t just want that stuff. I needed it.

So if you’re reading this and you need it too, please email me for the password. red_@hotmail.com

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Protected: The new neuro

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This time last year

It is 1.20pm on April 30.

This time last year I was screaming in pain, calling for an epidural, just three and a half hours away from giving birth to my son.

Right now, I am gathering scans and referrals, just three hours away from accompanying leigh to the MS Clinic.

Count your blessings, people. You have no idea where you’ll be this time next year.

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