Big Dot Points

Instead of writing in painful, and sometimes irrelevant detail (which I definitely do on a daily basis - sorry colleagues, family and husband) about the past almost 6 months, I think it's best I choose the dot point option. Some things may refer to Mad Sascha, other things will just be things. Things are good to talk about because for those reading this who have their own version of Multiple Sclerosis or who live with other chronic illnesses will also realise that that thing does not define you - we can do things too and we are not just sorry woeful souls. Ya dig?

• I actually got a job interview with the department. This, alone, is an achievement. Particularly since the position is not in my specialisation (Visual Arts), but in Learning and Support. I fucked the interview up. Disappointing, but not at all surprising. Just waiting for more positions to apply for, and since then, there have been nadda.
• My amazing husband graduated! That was tops. It was cold, but great. Proud moment. 
• 4 weeks in Europe was totes amazeballs. I was able to manage my fatigue and the heat REALLY well. I actually lost weight (not a lot) from doing a shitload of walking EVERY SINGLE DAY while still devouring delish meals (oh Italy and your buffalo mozzarella and tasty gelato!) and sipping sumptuous beverages DAILY. And because M and I were so on-the-go all the time, he was also able to crash with me which relieved that fear I had of being the potential party pooper. Some nights we were in bed by 8:30pm (how embarrassment). We did make it out until sunrise in Hamburg. Yes, really. I was just so lucky and grateful that Mad Sascha was in hibernation or just laying low for that 4 weeks. On ya Mad Sascha (*insert thumbs up here*). The whole trip deserves a whole post to itself, or better yet, its own blog (but I won't get that self indulgent). 
• I must say, I like jet lag because you just, sort of, out of the blue, fall asleep and you're totally asleep and it feels great in a really messed up way. A bit dangerous maybe. Don't drive on jet lag.
• I got a great tax refund due to overpaying my tax because my previous job crossed over with my return to teaching. Idiot. However, I paid off my HECS. 5.5 years at uni in total, paid off. 1.5 of those years I was like finding myself or something. Things were adjusted and I am now being taxed correctly.
• Meet up with the sis in Adelaide. Treated myself to a business class (with points) trip and sat behind Bob Hawke. He had a red wine rather than VB with his lunch. Caught up with my mother in law who told me she has been practicing drinking wine which I thought was so cute. Looking forward to having some with her come Christmas time. Ate some great grub and had some wanky 'deconstructed' cocktails. Had a ticket to a gig. HAD. Unfortunately Mad Sascha decided to make herself known…we were out, and boom! Hello fatigue. Like proper. Like not, oh I'll just rest a bit and get back to it. It was like Melbourne all over again. I HAD to bail early and head back to the hotel and sleep. It sucked. But, it's okay. This happens. This is a normal I am getting used to, and a normal I am learning to manage. Spoon theory (google it).
• Next day we drove to Broken Hill! I drove the full 6 hours. The sis was a bit…well she needed a burrito at like 10am. Nuff said. Interesting place, BH. We had dinner at The Palace, ended up paying $5 bucks to head into the only 'club'. It was atrocious. Props to the sis for lasting so long out there, out there in the outback…with the goats and the heat…and the expensive, but a bit shit, 'fresh' produce. Did some touristy things, and then headed on home on a train (13 hours) a few days later. 

Now I move into the last month or so. No dots needed.

The holidays were over and it was back to work and into term 4. It's here where things get a bit poo. I won't discuss all. Just the bits about me. 

I had a lump in my throat that I noticed came on and off over the previous week. I intended to see the doc at some point but I had a really hectic first week back at work where I needed to be on the ball. I mixed up an event at school that I was organising, which was no big deal in the end. However, if I had I got it right in the first place, it would have made things more manageable. 

The doc sent me to get an ultrasound of my neck. To describe to you what I felt is really difficult. It was like a lump inside that you could not see or feel on the outside. I had no other symptoms like sore throat, voice changes or reflux. It was 'weird' to swallow and generally uncomfortable. My GP suspected a possible virus, but did say it was a really difficult area of the body to try and diagnose. And without other symptoms, it just made it more puzzling. Mad Sascha at work? Who knows. It's gone now and the ultrasound came back with nothing. 

Then, the following week (let's call this week 2, term 4)…it's Thursday. I am at my desk, in my staffroom and I start to feel, well weird. Weird - it's the poorest adjective isn't it? Sorry. I felt like when I was reading words, it was very disjointed, like a stop motion…maybe a little less dramatic. The words weren't flowing as normal. I was feeling a bit dizzy as if i needed to hold my skull still. I stood up and opened the door for some fresh air, and drank some water. I sat down again and tried to just shake it off. No connection to Taylor Swift there. I couldn't shake it. I walked myself down to the front office and said, "Something is not right". In retrospect, I believe I started to panic. I felt like I was going to maybe pass out. My resting heart rate was 115 the nurse tells me. I was sweating a little and generally freaking out. I lay down in the sick bay and the lovely office staff called M, and he took me home. 

I made an appointment that day to see my GP. She's a legend. Had an ECG (normal), 4 vials of blood done and had a mole checked. I did have high blood pressure, and not low as suspected by the darling office ladies. 

The next day I returned for the results and yup, nothing. Usual expected stuff like the low white blood cell count (or whatever) which means my MS meds are doing what they should. Iron was fine but lower than last time, no diabetes, thyroid all good…one thing that was a bit odd was high protein but that could have been due to me not drinking enough water (I've made a conscious effort to drink more since this 'incident').

Mad Sascha again? 

I think…(and I am no doctor but I know my own body) that I have reacted to a few things with stress and stress is not good for us MSers, or anyone for that matter. It can, in fact, trigger a relapse. I must admit and I shared this with M, that I did feel like I was on the brink of having a relapse. During this time (about a 3 week period) I noticed more muscle twitches, especially at night, fatigue and the dizzy stuff remained on and off for almost 2 weeks since the above mentioned incident. Things have settled thankfully.

I am feeling a whole lot better now. I am back at the gym after not going for 3 weeks. So things are looking up.

I also had to eliminate 2 huntsman spiders in the last week. 

Are you tired? Yeah, I'm tired too.

So May is like MS awareness month.

A few years ago I set up an account to help raise $ (but most importantly, awareness) for the Kiss Goodbye to MS campaign run by the MS Society. I raised a bit of dosh and was able to convince the teaching staff at my school to wear red (I actually got the day wrong by 24 hours - whoopsy). I wanted to do this again a year later but you had to create an 'event' with no option for individuals. Oh well - they lose!

International MS Awareness Day is actually this coming Wednesday May 28th, so I thought it would be a good excuse to write an update on Mad Sascha. So here it is...

There's not been anything significant happening which is super.

I still have issues with my pulse deciding to be loud in my left ear, so that's been happening for more than 6 months now. Meh.

I think my MS highlight (or lowlight, rather) has been a couple of episodes of serious fatigue that I have never experienced before.

Fatigue is the most common and commonly complained about MS symptom amongst 'MSers'. It's really difficult to explain (I don't even get it sometimes) and I know there are times where I have felt very exhausted and very tired BUT I also acknowledge that people who do not have MS also experience tiredness (nah der!). When this tiredness happens to me, I say to myself, "Yeah hello, EVERYONE gets tired. What makes you so special Ms Mad Sascha?" but then I do realise that it really is probably a sign I am over doing it and it should not be ignored, but considered a bit of an unfriendly warning sign.

So the sis and I had a short and sweet meet up in Melbourne a few months back now. We had a blast. We treated ourselves to Mexican feasts including a chicken jug of margarita which we needed to stand up and pour with 2 hands, window shopping, art looking and picture taking. These are not unusual activities for me. The excitement was doing them in a different city (<3 Melbs!). I thought I was taking it easy. The first night the sis kicked on and crawled in at like 4am, but I was home by midnight!

While my dearest pescatarian sibling had some pampering done, I got back to the hotel and showered and washed my hair and freshened up all in preparation for a new night out to eat good food and tasty beverages. I was excited, but my body was not. I honestly struggled big time. I might even admit that getting dressed was insanely laborious. I got there in the end (dressed that is) and before I slapped on some make-up I just had a little tiny lay down on the bed. "5 minutes" I say to myself. Then I found myself slowly crawling underneath the delicious hotel doona. There I stayed until A walked in the door. I had to admit defeat and explain that I was not going to be able to party on. Luckily, A's big night the night before made her almost on par with me and my fatigue. I eventually chucked on a bit of a face and we dragged our arses to an awesome little Italian joint up the road, passing by some sweet looking bars, that, at the time had zero appeal to me (I will be back you cool little bars, you!).

All good though! I managed to wake up the next day with some improvement. But seriously, it was not a pleasant experience at all. It was a completely new kind of tired.

I've since experienced this feeling again, and it was after I had been sick (AGAIN!), been to a wedding the weekend before, had dad stay 2 nights, going on a school night date, 7:30am meeting, been to the gym, been out the night before (home WAY before midnight this time), worked around the house doing the usual domestic duties, but 'resting' did not seem enough to fend off the fatigue, so I had to sleep.

Boring damn tiredness taking up my precious weekend time!

So…that's that. When someone with MS (or any other illness/disorder/whatever where fatigue is an issue) says they are tired, or they need to leave an event early, try to be understanding and don't hold it against them. They hate it. They are also not lazy.

Wear red on Wednesday, won't you?

Russian Roulette: My response to the 60 Minutes story

Hello dear readers.

There was a story that aired on 60 Minutes just this past Sunday.
I am guessing not many of you watched it, and I am not really a fan of the program myself. But there was a lot of hype about in the 'MSer' community, so I took the time to check it out.

It was about an Australian woman who travelled to Russian to have HSCT (Hematopoietic Stem Cell Transplantation) for treatment of Multiple Sclerosis with, what is claimed to be, successful results.

I haven't emailed it to 60 Minutes yet, and I don't know if I will, but geez it felt good to write it (self-satisfaction!).

Here is my response:

"I was shocked at your portrayal of Multiple Sclerosis this past Sunday night.

Kristy is slowly dying is she?

Aren't we all?

I also have Relapsing Remitting Multiple Sclerosis (Dx 2010), and I am NOT slowly dying any more than the next person. It is NOT a fatal autoimmune disease.

Kristy is NOT confined to a wheelchair as you claim in your online intro to this story - you show footage of her walking around…albeit with obvious difficulty.

You also got the cost of her treatment incorrect. It seems you doubled it!

I am assuming you began the story in the worst possible light so it was to contrast sharply with Kristy Cruise's success with HSCT.

I can assure you that this story has rocked great hope in some MSers, but it has equally or even more so made a number of us a little angry at how negatively our autoimmune disease was presented.

Many of us get on with life and do not let MS overtake us. We manage and function within our limits, even when it is hard or frustrating to explain to others and have them understand. We actually allow other parts of ourselves to represent who we are!

We may forget why we walked into a room, or the name of someone we just met. We even jumble words in our sentences just like a drunk in a pub. Some of us have difficulty with that word on the end of our tongue that refuses to roll off, but the majority of us do not share the same type of memory loss as an individual with, for example, dementia (as implied by Kirsty Cruise’s memory concerns).  We all face some degree of cognitive decline, it’s called old age.

Thankfully, none of my friends or family appear to watch your program because if they did, I reckon I would be inundated with questions about this ‘Russian Roulette’ story, and I also reckon they would have developed a ‘fresh’ fear for my future as a person living with MS (like they need to go through that again).

I wish Kristy Cruise all the best and a very long period of remission. I also hope that any future stories you choose to air about any autoimmune disease are more thoroughly researched so as to not offend those successfully managing their situation.

That is all."

Hair Nightmare

I popped in to see my GP this week after my neurologist's advice to have my thyroxine upped with the purpose of dealing with my hair loss.

Just as expected, I needed a blood test to check my thyroid. So I did that and the doc said she would call me the next day (yesterday) will the results so I could start on a higher dose as soon as possible.

I was hoping to hear from her all day, then it hit 6pm and I thought poop, now I need to wait until next week. However, a little later on she called! Yay!

Unfortunately (and I guess in a way, fortunately too!), my thyroid blood test results come back all fine.

The GP suggested I take a Hair, Nail and Skin supplement for a while to see if that helps and if not…I need to see her to get a referral to a dermatologist.

I did a bit of research on the different brands available and read a few forums on how people rate them. Not many people were after results for their hair, but more nails and skin. Doing this 'research' does help a little, but also opens up a whole new ballgame! People say silica is great and worked for them (one person saying her mum who had Chemo swears by it), others rave about the biotin (though you can get breakouts), others suggest zinc then we have the vitamin D advocates. So now, I am confused.

My plan is to speak to my pharmacist and hopefully they can suggestion one of the many brands that might be best for hair specifically. So far, from what I have read the Blackmores works for a lot of people. PLEASE, if YOU have used any of these hair, skin and nail supplements I would love to hear your recommendations.

The annoying thing about this little 'experiment' if you will, is that it generally takes about 3 months to see any changes. That's a whole fucking quarter of a year!

Wish me luck, aye?

MRI results & changing favourite seasons

Yo, yo, yo!

Thank fuck it's raining. Summer is no longer my favourite season. I'll get to that later.

Today I went for a visit to my neurologist to get the results of the MRI I had last Monday.

That MRI experience was just a little bit more stressful that usual. This is because the MRI was to also check the veins in my brain to see if the noises in my ears were related to any vascular issues, so they had to put a cannula in my arm. Normally when I go for an MRI I make sure I drink plenty of water. The reason is when I had my second MRI ever (first in Sydney in a decent machine) they put contrast dye in me (to highlight any 'active' lesions), and after trying to find a vein in my right, then left then and again right arm, they had to stick the stuff in my through the top of my hand - NOT IDEAL. So ever since, I make sure I drink heaps of the H2O whenever I go to get my blood taken AND get and MRI (just in case I need the dye).

The nurse tried my right, then left then back to right arm…and phew, she got it in! It was a bit gross though, this thing hang in' out your arm. I just tried not to look at it. Despite my efforts in drinking plenty water, it was still a struggle. But we got there in the end. And that was that really. The stuff they pumped in me is meant to go in at a constant rate, hence the need for the cannula. I would have like to be better warned next time thank doc!

The MRI was a week ago, then I had a week to wait. Worst part. Too much time to think of what might be wrong with me. But this thinking was pretty well distracted with a 2 night trip to the Hunter Valley, a wine tour and the purchase of wine and some fudge. Then it was a night out at a Sydney Festival event. Then finally today came along.

M met me at the Neurologist. The Neuro said all my veins are fine and although he couldn't really pinpoint why I was experiencing the ear issues but did not seem overly concerned at all. It has reduced and I just hope that continues and disappears completely.

THEN he starts to go through the MRI images. Scrolling, scrolling. It's so weird seeing inside your own head like that. I don't think I will even get used to it! Especially when you see your eyeballs. So strange. So he's going through them, comparing them frame by frame to my previous MRI from April 2013. Now the good news is, that there were no active lesions and there was some evidence of lesions shrinking and correct me if I am wrong M, but some had 'gone' or were quite faint.

Unfortunately, one lesion had grown and then one more was brand new. Bummer hey? The new one looks biggish too. Sadface. BUT, neither are active. AND the neuro did say that really, I have only been on Gilenya (the oral MS drug) for almost a year, and it can take some time to 'work' - this was reassuring. It was suggested that we meet again in 6 months time. Oh and all my blood tests came back fine (tick!).

Some other stuff I asked about was my freaking hair loss. Fuck, fuckedy, FUCK! Seriously? It did get better between my increase in thyroxine and my stopping of Rebif and Pristiq…but then…come about November, it started again. THIS IS SO CRUSHING. It is a documented side effect of Gilenya, but the neuro thinks I might need to have my GP increase my thyroxine. So off the GP I will go. This will probably mean another blood test. Go back for results. Blah, blah and blah. Increase. Wait a few months for it all to kick in. Well I hope I don't go bald between now and then (maybe being slightly dramatic here).

I was going to bitch about summer in this post, but I think you've had enough so I will save that until the season is over, aye?