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tetsubinatu

June 2017

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tetsubinatu: (IAW Bernhardt)
I bought another armchair on ebay! And then I took the trailer across to pick it up. I like to feel competent. :)

tetsubinatu: (redblack name)
Today I had dumpling soup. I looooove dumpling soup but it is so hard to find a glutenfree version!

8d House: I love your dumplings and your mochi... and your staff. You make me happy!

http://www.8dhouse.com.au/
tetsubinatu: (redblack name)
Lots of things went well today, so I'm giving the day a 'B+', despite the fact it involved a trip to the dentist and a bad drug reaction at the hospital. The kids made it onto the train in time despite oversleeping, I did gentle aquarobics at the pool, I had enough energy to walk to the train station, the new dentist is nice and I made it to both his appointment and the hospital appointment in good time despite tight timing, eldest child was able to pick me up from hospital after the drug reaction and it was his turn to cook dinner so I could nap when I got home. Lots of good things today...
tetsubinatu: (redblack name)
Today my eldest and I moved another bookcase and I cleared most of the back door. All progress makes me happy! :)
tetsubinatu: (redblack name)
Monday - It was about lunchtime when I arrived and then I was passed through the triage nurse and first ER doctor to the second ER doctor. It was he who first said MS to me.

As it turned out, I was very lucky to have chosen Box Hill Hospital to walk into. They have a top-notch MS clinic on site and all the diagnostic tools right there, as well as a high level of awareness of the condition. I was sent down the corridor for my first MRI and had blood taken for the relevant testing that afternoon. When I read other people's tales of diagnosis on the web I can see how lucky I really was!

My eldest came over to pick up the car and my SoonToBe-ex came by with flowers and chocolate, which was sweet but disconcerting. I gave him my credit card to go and buy the school books I'd been planning to pick up that morning, which were needed for the start of the new school year on Thursday. One hard thing this week has been relying on other people. I'm an independent person and it does not come naturally to ask for help.

After the MRI, very late, Felix, a young doctor from Neurology, came past to give me the bad news that there were lesions on my spine highly indicative (when combined with my patient history) of MS. He said that I would be started on a treatment consisting of 3 doses of intravenous steroids which should assist with my current symptoms, however later he came back to say that his supervisor wanted to do more tests before starting treatment. I found this distressing, but the nurse later clarified that the delay was so that the treatment would not muck up the signs they were looking for, which made sense.

Tuesday-: In the wee hours of Tuesday morning I was moved upstairs to a single room in the Renal ward, as there was no space in Neurology. I woke up with a horrible feeling as if both legs had been coated in thick mud knee-high boots which had semi-dried in position, with more mud spattered liberally up my legs. I was scheduled for a lumbar puncture, I was told, but as it was a public holiday (Australia Day) that didn't happen. I was terrified of it, but desperate to get to the steroid treatment.

It was a frustrating day.

A senior doctor, Dr Loh, came past with Felix and co. to ask more questions. Waiting, waiting.

Wednesday: My lumbar puncture was eventually cancelled when a different senior doctor came to visit with his entourage. He told Felix that the results of my scan were conclusive enough that putting me through the ordeal of a lumbar puncture was not justified, as it would not alter the treatment plan. Thank you, doctor!

After that a cannula was placed in my arm for the much-anticipated treatment and I was moved up to Neurology, where I was when my friends Dave, Lee and Adam came to visit. They're relatively new friends and I was very much touched and cheered by their effort. I have a lot of friends and family who are not local, so real faces in the room was a treat. My children and STB-ex were also popping in and out every day with necessities and keeping me up to date.

A physio came by with a walking frame for me. Huh. That's a different vision of my future.

They did start the treatment eventually. The nurses were running hard all afternoon and it kept getting pushed back, but an hour into the 3-hour drip, I was taken downstairs for a second MRI with dye contrast. Neither the nurses nor I knew that this was going to happen. They had to interrupt the drip to insert the dye into my cannula. Still, they were able to finish it later.

Unfortunately, having it that late in the day meant that I was hopped up on drugs for most of the night! I half-woke up about an hour after falling asleep when a nurse came by to check my reflexes. My feet felt like they were booted in stingers! In my half-awake state I fretted that the treatment wasn't working and had awful semi-dreams.

Thursday - I finally lurched properly awake in the wee hours to find that my feet now felt about the same as yesterday morning.

I cried. For the first time since Thursday last week, I hadn't woken up feeling worse. The treatment had started to work.

When I phoned the children bright and early to wish them well for the start of their 2016 school year, I had a sense of optimism, rather than fretting at missing the day.

That afternoon I had a visit from another friend, Matt. I had reached out to him the day before with questions about MS, as he is quite high-profile in his concern about this scourge, which runs in his family. As it happened, he was coming into the hospital today for his own MRI. It was just lovely to chat freely with someone optimistic and yet realistic, warmly supportive and informed.

The second treatment happened. During it, Felix came by to ask more questions and say that the second MRI showed fewer lesions in the brain than had been anticipated. From my pov this was a good thing - meaning that most of my marbles were in good order! But it obviously worried the docs if they sent Felix to interrogate me about ancient history again. I began to fret about what it meant. At shift changeover the nurse said that a lumbar puncture was on my chart as a current test. Accidentally overlooked? Reordered? Were they going to keep me in hospital for more tests? It was a nagging worry. They'd seemed sure it was MS, but... what could it be, if it wasn't?

After 6pm the second senior doctor came around again to give me the official word: a firm diagnosis of MS. It was a relief, at that point. I told everyone on FB and phoned my parents. Onwards and upwards!

Friday - Felix had said that they could start the final treatment as early as about 10am and I would be out of hospital as soon as it finished. I didn't believe him, luckily. There was paperwork, and the final treatment was late again, but by 6.30pm I was heading out the door for home.

Throughout this time I was so grateful for modern technology! With my mobile phone and the hotspot it generated I could do my banking, distract myself with duolingo french lessons, chat with family and friends, do research into MS, watch TV and download podcasts... Just marvellous! The support of my twitter sisters and my old parenting board friends (from the 90s!) kept me from wigging out at times. Love you lot!
tetsubinatu: (gold coin)
Of course, the first thing the doctors wanted to know was past symptoms that might have been been ignored or misinterpreted. Here's a few of the things that came up:

Apparently there's often a virus or precipitating illness in your 20s. Most people are diagnosed with MS in their 20s or soon after.

In 1988 I was working and living in the central square mile of Adelaide, literally 5-10mins walk apart. One day I became exhausted at work and it took me over an hour to get home, moving a few metres from resting on a bus seat to a guard rail or tree guard at a time. I ended up at home for a couple of weeks. I actually made a complicated furniture cover while I was home, sewing in 5min increments, then lying down for 20mins. It was frustrating, but then it was over and my life went back to normal. Could that have started this off? I guess we'll never know.

I've never dealt well with heat. On hot days, I'm down for the count. This may be related, but I'm very fairskinned and when I heat up during exercise or in a hot shower I turn bright red, so maybe not. Right now I'm menopausal, so I've been living in cami tops with trousers and sandals for a couple of years now, adding a shawl or light cardigan if I do actually get cold at any point.

I fatigue easily. I've been saying I'm a 'low energy' person for years. Going off gluten really helped, but I still don't have the energy that most healthy people seem to have. I suspect that being a SAHM with the ability to regulate my own activities and take downtime at whim has really contributed to enabling me to avoid this diagnosis more than anything else.

I lost nerve sensation down one arm a good few years ago which was attributed to a pinched nerve. There were no scans although they did check my heart thoroughly, since it was the left arm, and I had physio which did not seem to help. The nerve damage from that seems to be permanent, but it's just a slight clumsiness and loss of sensation in a few fingers. Threading needles is trickier than it used to be. This was almost certainly an undiagnosed episode.

I had a week of double vision a few years later, followed by the odd day here and there where it came back. I just thought I was tired and/or had a virus. Luckly, that was a quiet week when the kids were old enough to walk to school. If I'd been needing to drive around and trying to work I'd have to have seen a doctor. This was unequivocally a previous undiagnosed episode.

About two years ago, my libido died. I've always had a strong libido so this was somewhat shocking, but I thought it was connected to menopause. It contributed to my marital separation, which was unfortunate, but it was definitely not the only cause, just another nail in the coffin. It could be another symptom - it's hard to tell.

Apparently I'm very unusual to have made it to 51 without a previous episode serious enough to get me to a doctor and diagnosis. But I also have what seems to be a mild,'indolent' MS rather than a more aggressive version. I can only be grateful.
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tetsubinatu: (gold coin)
It's lucky that there's practically no-one around here anymore to be bored by this stuff because I think I'm going to use it for a bit of an MS vent and record.

So, to sum up:

Wed 20/1/16: Came home from the dentist and noticed when wiping after using loo that there was a bit of pins&needles-type numbness that made it difficult to feel what I was doing. Thought maybe my panties got bunched wrong in the dentist chair. Ignored.

Thu 21/1/16: Daughter's 13th birthday. Busy all day but did notice on awakening that I had a streak of numbness/tingling down my left thigh. At bedtime loo visit, wiping conditions had not improved.

Fri 22/1/16: Beginning to feel concerned about continuing issues. Numbness/tingling on awaking was down to left toes. Decided it might be a pinched nerve and resolved to rest flat and see physio if not resolved by next week.

Sat 23/1/16: Realised I really should have seen doctor on Friday. Now feeling tingling/numbness on right toes and calf, and left leg is almost all like that.

Sun 24/1/16: Beginning to get scared. Tingling/numbness is moving up right leg, intensifying on left. Going to the toilet is becoming more difficult, with lack of sensation and difficulty in controlling pace and flow of evacuation. Flatulence is becoming a problem, although no 'accidents' have occurred.

I fell over while putting the bin out. I thought it was just a trip, but landed hard and flat.

Mon 25/1/16: Decided to complete urgent chores before going to drop-in doctor. Numbness/tingling intensifying in both legs. As I started driving, however, I realised that my control over my legs was not ideal, and decided my first stop should probably be Box Hill Hospital Emergency. (Good call).

As I crossed the road I stumbled, caught myself and wished I were not wearing slides which for some reason today were feeling sloppy and loose, rather than comfy. Walked carefully to Emergency, but stumbled again as I got up and moved towards the triage nurse after being called. A few minutes later, walking along a wide, flat, well-lit linoleum corridor, I went over flat and hard again. Felt like a complete idiot - but they were taking it very seriously. Not half an hour later, MS was mentioned to me for the first time.
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tetsubinatu: (bones)
I read a lot and today I found a previously unknown Stargate Atlantis series that was loooong! It's mainly Sheppard/McKay and there is some harsh stuff in there - mainly as flashbacks - of torture, non-con and dubcon. That's probably what put me off reading it if I came across it before. But the characterisation  is interesting (if sometimes a bit inconsistent) and the overall feeling is pretty optimistic, I feel. The darkness is pretty central to Sheppard's characterisation and it didn't strike me as torture-porn, despite what I've said. I am not a whump fan, honestly!

Anyway, this series has given me a rare and lovely day's immersion into SGA and while it may not be to everyone's taste, I recommend it.

Two-Body Problem series by bomberqueen17
http://archiveofourown.org/series/60759

Oh - I should mention that the series is not finished, however it has been recently updated and in any case the completed stories stand quite well without further addition. 
tetsubinatu: (bones)
Sometimes it can be a guilty pleasure to be able to spend some time alone, and today was one of those days.
tetsubinatu: (bones)
My daughter made cake today from a recipe in my NMAA cookbook (adapted to be glutenfree/dairyfree). I lifted it in and out of the oven for her, but otherwise all I did was advise. Good work, kiddo!
tetsubinatu: (bones)
Driving home from town this morning I was feeling a little blue, when suddenly a large, lazily spinning soap bubble was there in front of me, hovering above the road. A quick glance around showed no obvious source or companion bubbles.

I swished under it, hoping that the rush of my passing didn't cause it to come to harm, but I didn't get a chance to check the rear view mirror before the bend of the road and the pine trees hid it from view.

A delightful mystery!
tetsubinatu: (bones)
I went to the mall today, but on the way I thought I would drop in and use my petrol giftcard, since I'd given the last of my cash to the kid whose buscard was out of money.

Yeah, I forgot that place changed hands, so there I was, $20 worth of petrol in the petrol tank and no way to pay for it. Embarrassing! I had to leave my tablet with them as security, which made me hyperventilate a little. I'm not saying this tablet is my security blanket, but my daughter did ask later if I was sure I was recovered from the separation!

So then I got to the bank, and beautiful cash was handed across the counter so that I was able to redeem my beloved. Which made me happy!
tetsubinatu: (bones)
There's been a sort of knocking noise in the car recently. It was a little worrying, then a lot worrying. I told hubby I needed to take it to a mechanic and sure enough he grumped that his car never got any money. Which is true. But at this point I just wasn't prepared to drive any further than the mechanic's (less than a mile) without getting it checked, whatever he said.

No way we could afford to pay for anything more expensive than a missing screw for the next 2 weeks but I was determined to get it seen.

The mechanic hypothesised a drive shaft problem, drove it around the car park a bit then peered under the rear. He was just telling me he couldn't see the problem when he blanched and asked if I knew I was driving around with only 2 wheel nuts on my rear right wheel.

Um. No.

So he tightened the remaining nuts, which were very loose (eep), and moved a couple of nuts from the other wheels onto the problem wheel, telling me to stop by a wrecker and replace them when I could.

He accepted a case of coke for his trouble.

So, you know, the situation was a lot more dangerous than I had realised, but on the other hand, it was fixable pretty much instantly, and for free. I am very grateful to him!
tetsubinatu: (bones)
My daughter thanked me today for the cheese and vegemite sandwich I sent to her when she unexpectedly spent all day helping out at a local music festival yesterday.

"Does she like cheese and vegemite?" hubby asked as I hurriedly made it to go with him into town.

"She's always refused to try it, but she will," I assured him.

"Ummm, but..." he pressed me further.

There wasn't a lot of choice in the cupboards as I've been sick. "Trust me: she'll like it."

She did. :)
tetsubinatu: (bones)
My friend, whom I shall call Gothgirl, told me that she is moving back to live in this city very soon. Maybe even, next year, we might live close to each other once again!

Gothgirl and I have moved in and out of each other's lives since 1990, when she gave me shelter after I locked myself out and then I rescued her cat. I'd love to live near her again!
tetsubinatu: (bones)
I bought myself a hot chocolate today. A ridiculous indulgence at $4, but it was cold and I had hauled myself off my sickbed and poured myself through the shower in order to go and pick up my daughter and her musical instruments at school. Due to building works the supply of parking near the school is severely stressed at the moment, so I knew I'd have to get there early and wait. I can't wait until the building works are finished and I get my half-empty parking lot back again.

It was a good hot chocolate, though! 
tetsubinatu: (bones)
It's been black humour and schadenfreude today, as the politicians snarked and snarled their way through the estimates committees; Clive Palmer seized another opportunity to get up the Government's nose with a demand for more staff; and a senior state Liberal defected to Labor in exchange for either a clean conscience or a ministerial position, depending on whom you believe...

Meanwhile the LNP would like you to know that most voters appreciate that this budget is good for Australia. Polls, what polls? Oh look - a flying pig!
tetsubinatu: (bones)
It's the little moments that sometimes mean the most! Today the school was selling gluten-free dairy-free poffertjes as part of a fundraiser. My daughter was so excited that I cleaned out my purse of change so that we could share some. She's never had any before, and the last time I had some was 20 years ago before my dietary troubles were diagnosed.
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