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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Protected: Avonex still sucks, but less

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Update update

This update is going to be a collection of smaller updates. Are you excited?

 The renos

We heard from the builder today, just checking in, I guess to see if we’re still alive since it’s been so long since he heard from us. He had told us a few weeks back that he give us a recommendation on an engineer since we’ll need some additional certification but he hasn’t come through with that yet. That seems to sum up the renovation process. People tell you they will do things, then they simply don’t.

Compacting

I think we’re doing sorta okay. Definitely not being strict adherents but not abject failures, either. We haven’t bought much new stuff this year (though we have bought the occasional new thing) but more importantly we haven’t really bought very much ‘stuff’ full stop. We’re definitely spending less time worshipping the god of materialism.

We actually did buy a big armload of (secondhand) clothes at the markets on the weekend but it was all genuinely needed. Hunter’s winter pants from last year are all at least an inch too short, some of them closer to three inches. Even her dresses from the summer just gone are so short we can no longer let her wear them without leggings underneath because they’re just indecent.

So we bought a stack of leggings that will work under her dresses as Autumn outfits and will also work over tights with long sleeve tops and jackets in winter. We also got her some jeans and a denim jacket.

I am planning a brand new purchase, too. I saw on tv the other night this nifty gadget that turns a single flush toilet system into a dual flush. Our two toilets are both single flush and they waste so much water. This thing just screws in and saves nine litres every time you choose the half flush.

We’re also doing better at not buying so much overpackaged food. We’ve always bought potatoes and rice in 10kg bags. Now we’re also buying 1kg tubs of yogurt to spoon into our own smaller containers for lunch boxes, and we buy 5kg bags of flour. There are other things too, but you get the idea.

Meanwhile, I actually can’t remember the last time I bought something from Myer or DJs. I’d love to say I don’t miss it, but it would be a lie. Leigh is far less materialistic than me and I probably would have fallen off the wagon in spectacular fashion by now if she wasn’t along for the ride.

The veggie patch

It’s done much better than we anticipated. We’re still hauling in truckloads of tomatoes and we’ve been eating lots of silverbeet and rainbow chard. The other things are still growing merrily and in due course we expect cucumbers, eggplant, peas, onions, leeks, rhubarb, zucchinis and a LOT of pumpkins. I think I am forgetting a couple of things but they’re the main ones. We also have a stack of herbs outside the back door.

The kids

Hugo went through a very fussy phase last week where he barely wanted to breastfeed at all. He wasn’t eating much either, but that’s usual. I was starting to get worried by the fourth or fifth day of just-wet nappies, then suddenly yesterday they were full again.

Apart from that, the boy’s mostly his usual obliging self. He is starting to be clingy and it gets frustrating when I can’t go two steps without him crying and lunging at me, but he’s generally still pretty easy going.

He’s saying a good handful of words now (‘that’ just started today) but my favourite is “Hunter” (huh-duh). It is just too cute.

And speaking of Hunter…where do I start. We’re having behaviour issues again the past few days. She has realised that I don’t actually have any real control over her and if she chooses not to do as I ask, there’s not much I can do.

If she is being naughty (you know, like 75,000 times a day) I might ask her to go to the naughty chair/clean up the mess/say sorry etc etc. Lately she says no. If I try to institute some alternate discipline she says no to that too. Today I asked her to stay in her room and have a rest. She said no. Then she said “I am going to cough on you”, which she did. I told her to go to the naughty chair. She refused. I carried her there and she immediately got up and ran off. I told her she was going to go outside and she said “Fine, if you send me outside I will ride my bike and play and won’t care”. Which is exactly what she did.

Anyway, it’s not as bad as it was a month or so ago so I am hoping this is just a blip. she’s being pretty good at preschool and has lots of good days at home, too. She just makes me feel completely inept when she wants to.

The study plans

I’ve done a lot more thinking about what I want to do since I first stumbled on the idea of some more study. The more I have thought about it, the more I have realised that what I really want from my career is enough money to pay the bills and a whole shitload of holidays.

So my current plan is to get out of PR and into teaching. I intend to take my time and hopefully be done with study and ready to get a full time teaching job around about the time Hugo starts school.

The prospect of all four of us being on the same timetable is very appealing. I could make more money doing what I am already doing but there’s just no way I’d be getting 11 weeks off a year.

Leigh’s MS

I could sum up this update by just saying that it still sucks. We think she’ll do the injections on a Thursday night rather than Saturday as originally planned. It seems the side effects are not going to be as bad as they might have been (touch wood) so we kind of like the idea of making the injection part of the drudgery of the week, not a low point in the weekend.

The nurse actually suggested Friday night but leigh really looks forward to Friday night because she has a couple of drinks with her colleagues after work and just gets to take a breath and relax. I really think it would spoil it to know she has to come home and inject herself, especially since it’s probably going to continue to be really difficult for a good while yet.

She thinks this week she wants to go off by herself and do the injection in her own time. I have no issue with giving her the space she needs but I am a little bit worried about coming in to find her passed out. I guess we’ll see what feels right at the time.

Meanwhile, people are coming out of the woodworks with their own stories about their friend’s friend’s friend with MS and the miracle cure that worked for them. Some guy that did prac at leigh’s school gave her some dumb book that purported to have the cure for, well, everything. We didn’t even glance at a single page. We figure if there’s some actual scientific evidence favouring any of these theories then the MS Society will clue us in.

(I just want to add here that I know two people whose partners have MS and while I have been generally unhappy with everyone else sticking their oars in with assvice, I have been very grateful to them for sharing their firsthand experiences)

Right – I’ve been typing for ages and Hunter’s been occupying herself by doing a big poo. She’s just come in with her dress bunched around her waist and an invitation for me to do some wiping. Who could resist?

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Avonex sucks

Leigh had her first Avonex injection yesterday and it was far more upsetting and traumatic than either of us anticipated.

I think a large part of that was the realisation (again – must this hit us so hard and so frequently??) that this is a serious disease and that it’s going to be a big part of our lives from now on. The need to start medication came much sooner than we expected and it’s all scary and overwhelming and just bloody awful.

On top of that is the fact that she has to self-inject. I know lots of people who have had to jab themselves with various fertility drugs but it’s not quite the same. I mean, mechanically, it’s the same, but psychologically it’s not. You don’t take fertility drugs forever, and it’s fairly clear whether or not they’re helping. You’re not afraid that if they don’t work you might end up unable to walk or see or feed yourself.

Having to inject it herself feels like a huge burden of responsibility. I can almost hear the voice in her head – ‘your future health depends on you getting your act together and injecting that drug’.

The other thing that took us by surprise was the extent of leigh’s needle-phobia. We knew she was a bit scared and wasn’t going to enjoy it, but I think we both underestimated how she’d react when it actually came to the crunch.

The nurse went through the process with her with a training kit – injecting water into a block of high density foam. And then it was time for leigh to do the real thing. I feel nervous and nauseous just thinking about it.

She kept preparing herself, almost doing it, then backing out at the last instant. At one stage she put down the syringe and put her head in her hands, saying “I don’t think I can do this”. I felt useless. Leigh is such a bull-by-the-horns person. It was awful to see her so defeated by this.

Hugo was tired and cranky and I was trying to be there for leigh but he was so distracting that I ended up having to leave the room and get him to bed. I was gone for about 10 minutes and when I got back she’d managed to go through with it, but was in bad shape.

She was ashen and slick with sweat and looked like she was about to pass out. The nurse had given her a glass of water and we took her to the couch where she sat, pale, nauseous and shaky, for the next half hour.

She’s already really stressed about the prospect of having to do this again next week – and the week after, and the week after, and the week after…

She has lots of other options (go to the clinic and have a nurse give it, have me give it, switch to one of the other meds which are delivered sub-cutaneously) but she seems to be viewing this as a test of her own fortitude. She feels obliged to stick with this medication and to get better at injecting herself, come hell or high water.

I feel like she should try it for the next couple of weeks and see how she goes. If it’s going to be this difficult and upsetting, I think we should consider the alternatives. I don’t want this hanging constantly over her head, it’s too much stress.

Meanwhile, I think she’ll be changing neurologists. I was very unhappy with hers the one time I met him (diagnosis day). He was blunt and totally without compassion, and also not very interested in giving us information, advice or options. When he started leigh on the medication, he told her with luck it’d all go well and he wouldn’t have to see her again for 10 years. He didn’t even mention the fact that she’d need frequent monitoring because Avonex can affect liver function, among other things.

The MS Society nurse (who was utterly fantastic and a very welcome source of calm guidance) is not allowed to give recommendations or share opinions about neuros, but she couldn’t hide her shock when I told her the neuro said he may not need to see leigh for 10 years.

She said, “All I can say is that we recommend you see your neuro at least every six months, and that you are always entitled to a second opinion”. We’re going to try to get an appointment at the MS clinic in camperdown – the neuros are up to date on the latest developments, involved in research and actually interested in their patients’ welfare. And they bulk bill.

The sliver of good news from yesterday is that the side effects weren’t too bad. Leigh started feeling fatigued and a bit achy after a few hours and then was feverish the rest of the night, and woke still hot and a little headachy this morning, but she was okay to go to school. On the nurse’s instructions she’d taken two panadol before the injection then two long-acting panadol before bed, and they seem to have helped.

She was on a half dose this week and will be next week, too. The following two weeks she’ll take a 3/4 dose before graduating to the full dose. We’re hoping the side effects won’t increase with the dosage.

I really don’t know how next week will go. This week was such an awful shock that I think the psychological barrier might be even tougher to overcome next week.

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