It's almost time...

...to leave this hot hell of D-Town.

Apologies for beginning so negatively...well, it's actually a positive.

The past 4 days or so have been stinking hot. Yes, yes, what else would I expect in D-town during the build up? "Here is a cup of concrete, precious Sascha"

I have many apps on my iPhone. One of these apps is a weather app and the info comes from the B.O.M. It gives you a bunch of info about the weather, including the 'feels like' temperature. Today it said 'feels like' 45.1 degrees!!! 4th day where 'feels like' has crossed the 40 degree point. I know it is not wise to believe all you read, but I will vouch for this one. It was bloody hot and steamy. I would exit air con to venture to meetings and assemblies around work today and my glasses would fog up upon entering the furnace of outside-land.

Finally, after days of no rain, D-town got a good drenching at about 4pm. Yippee! Rain! I have never been so into weather before. I saw this awesome lightning strike across the water from our balcony that hit Charles Darwin National Park!  First time I have witnessed this. There was like this flame at the end of the strike. I was very surprised that it did not start a fire! Anyways, sure, it got cool (-ish) for a while. I was still unable to enjoy a cold shower. I get a cold shower if I am prepared to stand under the thing for the first 30 seconds of turning the tap on. After this time, it becomes lukewarm and in no way is it refreshing. To combat this, I need to prepare the bedroom with cooling air con air beforehand so I can let the cold air cool the water that sits on my skin.

Try the pool you might suggest? Ha. It's like getting into a warm bath. Then I start to think about bacteria. You know, heat and water. Gross.

So basically, what I am getting at, is that it has been fucking hot man. Seriously suffocating stuff. And with people I know who have lived in the NT for more than a decade start bitching about the heat, I feel I am allowed to moan and groan about it also. I have been sweating like crazy. Need some salt? Just lick my skin.

What does this all mean for Mad Sascha? Well she hasn't exactly reared her hideously ugly head in an intrusive manner, but she has made me quite tired and well, perhaps a little grumpy bums. Poor M. He has had to put up with my moodiness and want of getting the fuck outta here.

We leave in about a week and a half. It is quite emotional. I want to drop the bundle. But I won't because I am strong or whatever. I just want it to be then, now. Ya know what I mean? How did I last this long?

My left leg is still weirdo. Altered sensations and all. And my knee, well it's still weirdo too. No worse, no better, just there. Annoyance plus!

I have plenty of other non-Mad Sascha related things that have been goin' on. My oldest friend's wedding, the fire alarm in the building going off last Saturday morning due to some douchebag letting off crackers in the fire stairwell then obstructing the entrance to the fire stairwells with shopping trolleys (wtf?), M surprising me with tickets to M.I.A in January at the Enmore, getting a visit from the sis (love you A), finally finishing a book (with words and no pictures) called Tamil Tigress, perfecting a pumpkin risotto and being rejected for a few teaching/education jobs.

I cannot believe that I have managed to get through 3 years of living in D-town. With M away for 9 months, getting diagnosed with Mad Sascha, dealing with my thyroid issues, having 3 stone chips on my windscreen, oh gosh, it's been tough AND we are going to miss seeing Paul Kalkbrenner on December 15th (devo) in Sydney-town.

M is looking forward to seeing the old Sascha again in Sydney. As am I.

Thank you so much for reading my blog. I cannot express how much it means to me that you take an interest.

I must now prance and sing around the room to this Pixie's tune while I pour and continue to sip on another NZ sav blanc.

Untitled Post

So I have been to see the exercise physiologist. It went okay. Although the disappointing news was that she is unable to diagnose me as having spasticity. Instead, she can help me gain and maintain my strength and mobility.

As it was the initial consultation, she went through all those kinds of health questions...have I had a stroke, how much do I exercise, the pain I get in my knee and when I get it, how long I can exercise before the awkwardness of my leg occupies my mind, am I stressed (what teacher isn't?!), do I have diabetes etc. I think you get the picture.

She pointed out that the MS and heat are not a good combo, and I was like, "Yeah I know that! Plus I have 'issues' with my thyroid too" Argh!

Then I had to do a few things like walk briskly for 6 minutes on the treadmill whilst wearing a heart monitor thingy. This was a struggle only in that my balance goes a bit weirdo with my left leg and keeping up the pace once I got started was difficult to maintain, so she had to lower the speed...then it was generally okay.

I had to do some flexibility stuff, which I didn't do too badly at, but there is a notable difference between my left and right legs. But my glutes are awesome - yay! My butt is great!

So her suggestions are to start slow with low intensity - some stretching and mild cardio stuff. Hamis and quads for stretches and 10-15 mins on the stationary bike, every second day.

But some questions remain unanswered...why is my knee stiff? Is it a direct result of Mad Sascha?

I highlighted the fatigue and heat as being things that have affected my motivation to do exercise, on top of my knee stiffness. Most of her suggestions I have tried in the past. One was that I should do exercise at certain times of the day i.e. morning and after 6pm, when the weather is 'cooler'. I wanted to laugh out loud. After all, she did just see me sweat like a mofo after like 2 minutes on the treadmill (in air con!). Do I need to again remind you that Sascha and heat do not go? They do not go so much so that it affects my socialising. Yes, we must get a table inside and enjoy the expensive air conditioning, rather than the balmy breeze outside. Is that venue air conditioned? Because if it's not, I can't go. Oh yes I would love to go to that outdoor music festival, but do they have some kind of outdoor air conditioning (uncomfortable laugh)? And there have been moments where I will do these things and do my best to believe that I will be okay and it won't bother me. Only moments later do I regret it. It's really fucking sad.

Do you understand me? Can you understand this? Do I understand it? Should I just toughen the fuck up and deal with it? No pain, no gain?

I wish I could be funnier in this post. But not today. Today I feel like a useless lump of existence.

Now excuse me while I make my dinner.

A heap

Hello dear readers. How are we all?

It is closing in on the end of September and I guess it is time for an update again.

The left leg is still annoying me. Numbness/altered sensation yadda yadda yadda.

Today I saw my GP. I needed a prescription filled and I wanted to ask about the tightness I have been feeling in my left knee (How long for? Months I think :-/).

I really had to push to get any kind of attention. It was most difficult explaining that the altered sensations were a separate issue to the stiffness in my knee. It has been affecting how I walk and is worse at night and in the morning. Surely there is something for this??? I have no doubt that it is MS related and I also had to emphasise that I experience this tightness ALL THE BLOODY TIME. As I have explained before, it is not painful as such, but I certainly cannot handle kneeling (don't go to the gutter please). When M does my needle at the top of my butt butt I lay on my stomach and getting into that position and coming out of it can be troublesome. Troublesome in that I feel like a wounded walrus attempting to get back into my usual vertical human existence. Why? The knee! I cannot place any pressure on it, and it's not a joint thing. It's not a muscle thing. It's an altered sensation stiffness thing - this sounds like I am going back on what I just explained with the altered sensation and stiffness being separate I know...oh geez, so are they separate issues? Shit. Now I am confused.

So the end result was organising a health plan thingy to see an exercise physiologist. This comes under the Team Care Arrangement plan for those with 'Complex Chronic Medical Condition' (Oh yeah that's me!). This means I can receive up to 5 sessions with an exercise physiologist at a heavily rebated rate. I am a little skeptical. I am not sure what they can offer me. I would like to be able to be more active, but it's been a real bitch lately with this knee business. And I know M would like me to get out of the air con more. We will see how it goes. The appointment is next week. I am hoping that they might be able to diagnose me more accurately than the GP. I did question her and asked if it could be spasticity, but no direct answer was given...possibly because she just doesn't know?

Now to touch on the Hashimoto's aspect of my health. I still get hot. Sweaty. Gross. I am due for another blood test for my thyroid and I am hoping that my thyroxine dose will be increased a little more. The heat thing is really not pleasant, particularly with the current weather conditions here in D-Town. No rain (yet), just sizzling heat. Oh yeah, and the air conditioning at work was broken for about 2 hours this morning - JOY.

I did manage to get a few days off work too. Yes I have a good reason! Don't go assuming that I am using my MS as an excuse. I am using it as a REASON. Thank you Naomi for pointing this out a few weeks back - in a different context but under the chronic illness umbrella.

I have been coordinating an art exhibition at work. Not a little one. Not a school only one. A community art exhibition - encompassing the schools in the area AND artists (trained or not). It has been eating away at me for the past 3 weeks (it all ceases tomorrow, phew!). It has been eating at my teaching (my actual job). Eating at my emotions. Eating at my time (oh my time!). Eating at my patience with people (educators included) who either cannot (oh man I hope that isn't the case) or DO NOT READ! Do not get me started. All I will say is, read the instructions people.

I also had a prac teacher to supervise, which was really a blessing in disguise (not like a religious one). Lucky she was a good one! And then there were reports to do.

I have been pushing myself the past few weeks. Sweating my ass off. Organising. Emailing. Back and forth and all around from the staffroom, the admin office, the finance office, the gym, the storage room twenty million times a day. Buying booze for the opening. Moving stuff. Oh Em Gee! My body is just like, "What the hell?" I just want to sleep and do nothing and then feel better for it.

So, I was given tomorrow and Monday off with a medical certificate. But I am not taking tomorrow off. I can't. I have stuff to do. Is this wrong of me? Some might say yes. But I just can't. I think it has to do with some high work ethic I have. I dunno.

On some lighter notes, M had flowers sent to work for me. Not for any reason. Just because. And you must all try the Macro Organic Tomato and Chilli Pasta Sauce from woolies served with homemade pasta. It is fucking delish!

Long time, no speak!

Well, well, well! Hello!

Long time, no speak.

It has been the longest time between posts. "Why?" you might ask. Is Mad Sascha okay? Has she dropped off the face off the planet? Not quite. I've just been busy with life and stuff.

I have been to Sydney and the Nation's capital for the generous (and well deserved, I might add) 4 week holiday us teachers experience here in the Top End, oh and down to the snowy areas (close to Jindabyne). Don't worry NSW Teachers, we get just little 1 week breaks over Easter and October. ANYWAYS...so I went to Sydney and M and I have moved apartments. Busy times.
Sydney was great. Canberra was cold and the snowy region was cold (der) and peaceful.
I got tonsillitis in the last week of the holidays, and boy did I get it good! I can't remember the last time my nose was so blocked, accompanied by the inability of being able to get that snot out with nose blowing. And the fatigue...oh my. All I wanted to do was rest and stay in bed. And my wonderful mother organised 2 nights in a hotel for the end of my trip but I was such useless company. Boo. I got over it eventually - after several coughing attacks in my first week back at work.

Right at this very moment in time, I am sipping on a 'Sex on the Beach' premixed cocktail. M is having a mix. And a long weekend is ahead. What public holiday? 'Picnic day'. Hold back that jealousy people. Just wait until the 'build up' comes and that jealousy will be reversed. Trust me.

So...Mad Sascha. Yeah, unfortunately she is still about. And the leg? Oh yeah, it's still numb, sensations altered and the rest.

The weirdo numbness in my left leg has not become worse, but it has also not improved. And I think now I am just dealing with it as a 'normal' feeling, as much as that sounds like it would suck, it's okay. I am okay.

I have stopped injecting the Rebif into my left thigh, due to the weirdo sensations. I did it a few times after my leg turned numb, but each time was quite painful. I can just be grateful that I have other fleshy bits to inject. High five to flesh bits!

To join the weirdo sensations club, I do think that I have another layer on my left leg around the lower thigh, knee and upper calf area. Right, now explaining this feeling is difficult. It is like a tight feeling, a bit 'stiff' if you will. It is this particular sensation that has me holding onto hand rails when faced with stairs. It is not painful, just awkward.

I had a bit of a 'slip up' up some stairs when I was making my way to my car at the Northern Territory's largest shopping centre, 'Cas' as us locals refer to it. It was a tad embarrassing, but I made a solid recovery and managed to break my fall with my hand (on the gross dirty step - ewwwie!). To set the scene, there are no handrails. There was a woman waiting at the top of the stairs for me to come up and because I was shifting my weight evenly while making the journey up, I was taking up the width of the stair well. I still had a while to go and stupidly shifted myself to the left to make room for another's body to pass me. And it was in doing this 'move to the left' manoeuvre where I lost some balance and slipped up. The woman's partner asked me if I was okay once I successfully reached the top. I just laughed and was like, "Haha, yeah". Humour. It's good stuff.

I do lose my balance a few times a week, to give you an idea. Not badly. Just the odd drunken looking 'wooo' as I spin on one foot to regain myself. I have lost balance in the classroom at times. It has gone unnoticed with my students, as far as I know. I am pretty 'honest' when it comes to doing minor embarrassing things in front of my students. Like what? Well, stuttering or getting words muddled like a mojito. Spitting whilst talking. C'mon, we have all been there! "Oh geez, sorry I just spat on your book!" Not huge chucks of saliva. Just little bits. The students just laugh and I move on without issue. I can be a bit loopy in the classroom anyway, so it all fits in okay when those moments happen.

I might leave it there dear readers.

All in all, things are fine with Mad Sascha. She is being consistent at the moment, that's for sure. I am just dealing with it, without getting my 'woe is me' hat on. Hats have never suited me anyway...

Start - middle - end. Where am I?

Again, it has been a little while since my previous post.

So what's been going on?

MS Awareness Month and Day has passed. I raised $170 via the Kiss Goodbye to MS campaign online. Thanks to anyone who donated. The money does not go directly to me, but to stuff for research and all that. Good stuff. And welcome, any new readers who clicked on the link I posted on my Kiss Goodbye to MS profile.

Thyroid news: Well, I am continuing to take the thyroxine, same dose, each morning. Got my 'bloods' done (this seems to be what people say, so I thought I'd give it a crack) and yes some of the results came back normal, but I had another thyroid antibody test done. I have Hashimoto's Disease. Google it. Basically my thyroid is getting attacked by my own body, so it is another auto-immune disorder to add onto the list! It means I may go through periods of experiencing hypER and hypO thyroid symptoms, before the disease settles into hypothyroidism. Joy.

Anyways, let me go back to Mad Sascha.

In my last post I mentioned the numbing weirdo sensations I was experiencing on my left upper front thigh. I guess this can be classified as a relapse due to these stupido weirdo feelings lasting more than 24 hours. Is it over? No. Boo. I can't really say that I am in the middle of a relapse. In fact, I can't give you any indication of where along the space of time I am with this relapse because it's still going on. Unfortunately it has slowly become worse over time. I am still walking which is super, but it crawled down my leg. That bastard.

If I were more of a maths geek I could probably give you a rate of speed as to how fast/slow these sensations moved along. But I have better things to do with my time.

It is V annoying (that's 'very' annoying for you baby boomers and above). It's painful, yet numb. Hey? That sounds ridiculous doesn't it? How can I explain further...If I touch my own thigh (as I try to do sometimes wishfully thinking by massaging it, all feeling will return) it is not painful. But if M touches it (mind out of that gutter please) or I lean on something unconsciously or I smash into the school desks (which I did, which left a massive ever changing coloured bruise), I feel pain. Enough pain to give out a little 'yelp', groan or "fuck!". It makes me angry.

Now I would like to address the 'numb' part. Clothing, most of us like wearing it. Some of us like it tight. Some like it loose. Some like a variation. I put clothes on my bottom half (skirts/shorts yadda yadda). It can be 'painful' doing this because...um I don't know why...because the material rubs quickly along my skin? (Yeah, righto Sascha). Anyways, once the items are on, I can't feel them on my left thigh. I almost get panic attacks thinking that maybe my clothes keep breaking in the same spot and exposing my naked thigh! I look down and no, I am still covered. Basically, when clothed, I feel naked on my left thigh. And when I sleep! If I am on my stomach, it feels like I am missing my left upper thigh. I can see it in my head. There's just this mysterious gap between my torso and the top of my left knee. WEIRD! Sorry, 'weird' is being way overused in this post.

My mobility has been fine, generally speaking. However, I have temporarily gone back to my granny days of holding onto the handrail when climbing up or going down stairs. More so going down stairs actually. There is a little party that goes on when my feet realise they have reached the ground. It makes me a little bit sad. I used to be ace at running down stairs. It was definitely one physical skill I mastered, especially living in a 3 story home for most of my teen life.

I have a lot of things and stuff that I want to write, but some is really boring.

I have a school production happening next week, which is really going to test me. Perhaps I will write a post once it is over. I hope this week flies by

Update...or updown?

So it has been a while since my last post. That's really because the MS part of my life has been travelling smoothly...well, until sometime last week. I will get back to this point in a few minutes.

In unrelated news, my thyroid saga seems to be dominating lately. I have been taking thyroxine for just over 4 weeks now. No noticeable changes in 'likely' thyroid related issues (hair falling out, twitching eye, tiredness, feeling blue, insomnia, muscle twitches, weight control). The most mysterious issue being the heat sensitivity (as it was suggested, or rather decided, by the neuro that my heat tolerance is NOT MS heat intolerance). And with the heat thing, it sets off other things that make stuff difficult. Sweat. Self-esteem. Melting make-up. Tiredness. Inability to sit outside in a warm environment comfortably. Inability to sit INSIDE even - unless the air con pumps away. Sweaty head = itchy head. Itching madness is not ideal.

The weather here in D-Town is beginning to feel a lot like (no, not Christmas) the 'dry'. So that has been a good thing - though Mother Nature seems to be messing with our heads on this one over the last week or so. I went to the 'Taste' food and wine festival last Saturday night and sweated like...like...not like a pig, more like a mad boxer training like a mofo before a match.

BUT it does take a good 6 weeks for the meds to kick in. So the plan is, is my mind, that I will have a blood test in 2 weeks time. See the GP (who I saw last week, who was 'shocked' that Dr B put me on thyroxine, who annoyed me with her doubting of my symptoms being thyroid related, who wanted to 'blame' it on my other meds, who basically irritated me, who I thought in my unofficial medical opinion should be referring me to an endocrinologist...anyway...am I still talking in brackets? Shit, yes. Sorry) for the results...and will hopefully send me to an endocrinologist for a more informed opinion about my heat intolerance and a better plan than just "let's do blood tests use the results in a textbook like manner disregarding how I am actually feeling as an individual case."

Moving on now kids...the MS. The damned MS. Oh BTW it's like MS Awareness Month during May. And there's a day too...MS Awareness Day - let me check the date. Uno momento...Ahh yes...here we go. For goodness sake...the website tells me the countdown in weeks, days and hours. DUDE! It's Friday. Not maths thanks! Okay Tuesday May 29th. A Tuesday? Why? Click here for more. Donate if you want. Or get a badge or whatever. I ordered one today. Personally, it's more about awareness. And if you are reading my blog, then that is enough for me. Thanks.

Yup, so that part is out of the way. Now back to ME! Mad Sascha is about...

I've got a numb thigh. The left one. Not the entire thigh. Just the top front part. No tingles. Just numb. No disability. Just annoyingness. Just a little reminder. I do wish it would just piss off. And it will. Well, it's likely it will. How long? Who knows? Your guess is as good as mine.

It has been just over a week since it started. I can’t actually pinpoint the exact day and time. MS symptoms are like that I suppose. They just kinda creep up on you without a loud and obnoxious entrance. I guess a loud and obnoxious entrance would suck even more.

I have also just noticed today that I have a slight numbness on my right arm. The forearm. The inner forearm. Not all of it. It's like from the bottom of my thumb, up past my wrist and stops somewhere near the inside of my elbow. I guess it could've crept on in today? Or even yesterday? I don’t know. Why does Mad Sascha have to fuck with me like this?

Anyway, there's the update (or updown).

Good stuff and things - yay!

Well, you might be wondering what my previous post was all about. What does it mean? No. New. Lesions.

I am back in D-Town from my Sydney visit which consisted of a bit of fun, but the main purpose was to get my MRI, see the neuro and the dermo. But the dermo was cancelled, because I was diagnosed with an underactive thyroid - the symptoms I am experiencing have been attributed to the thyroid issue which resulted in the dermo cancellation. And I probably didn't need to explain that to you. Anyway...

I have already gone through the whole "Let's find Sascha's veins" which occurred twice in one day, but I am yet to share what went down during my neuro appointment.

It was on Monday this week, and I went along with my mum. I was all calm until a few days before. It began to really consume all my thoughts...those 'what ifs' reared their ugly head again (again, damnit!). M was unable to come along, as he had to come back here to D-Town for work (geez I love work - Butterfinger reference there). My appointment was originally the Thursday before, but this was postponed. Specialists need time off too ya know! I had copies of my MRI. I had a peek at them, but then remembered that I was a school teacher and not a neurologist who specialised in Multiple Sclerosis.

So we were on time for the appointment. Dr S was running a tad late, but not enough to whinge about.

It got to my turn. Mum and I walked in, greeted by the neuro. All good.

We sat down, and he looked over my previous notes. I hadn't seen him since July-ish last year.

I informed him about the new meds I was on...the Pristiq and thyroxine. Blah blah blah. Boring! What does that stupid MRI say!?

Silence.

Dr S was looking at the computer at my MRI. I couldn't see the screen. Not that I would know what to look for anyway. I was getting anxious. I was attempted to read his face. Let's just say I have no future career in reading body language or facial expressions. C'mon man! Say something.

During this time, he asked me about any new symptoms. I explained my twitching thumb and my eye wide open. He multitasks very well.

I, of course, began to think, 'Okay so he has seen some new lesions or active ones and wants to know if these 'symptoms' I am reporting correlate with the lesion's positions on my brain and spine.'

Sascha! FFS (that stands for 'for fuck's sake' for anyone unsure)! You need to stop these trains of negative thought! Agreed?

Once I finished my reporting of these 'symptoms' he did not seem too concerned at all. Just as I had read, symptoms need to be fairly consistent for more than 24hours.

Then...he says, "You have no new lesions, and the ones you have, have shrunk/decreased in size".

OHHHhhhh yeahhhhHHhhhhh! High fives! Success dance! Yesssss!

The drugs are working. You hear that 'The Verve'!? They are working!

Okay, so this is sweet news. I am totally stoked. Mum is rejoicing.

I ask about a few things...mainly my heat intolerance.

Basically, I get hot. I break a sweat washing the dishes. Getting ready for work. Doing simple everyday tasks. Brushing my teeth. And so on. All this heat stuff REALLY got up my goat during the 'build up' last year. It was evident prior to this that my heat sensitivity/intolerance/whatevs was something that I was experiencing on a daily basis, but during the build up, it was bloody awful.

Anyways, I bought myself a thermometer. I would measure my temperature when I got hot. My internal temp was normal. Now this puzzled me because from what I have read, when you get hot with MS, your internal temp rises and your symptoms were exacerbated. This wasn't necessarily representative of my heat intolerance experiences. BUT, with MS having such individual affects on sufferers, I just figured I had a weirdo version of heat intolerance that was not identified in typical MS descriptions.

So I questioned the neuro about this. "No, that heat intolerance is not MS heat intolerance. It is likely to be related to your thyroid".

But...but...but no. I want answers and I want to know what things are what and what is MS and what isn't and I don't want anything else to be wrong with me. I am 30 (now I am actually 31 - yeah, had a birthday) FFS.

Initially, this really upset me. Sounds so ridiculous considering the great news I had just received about having No. New. Lesions. But this news overtook that. Then I came back down to Earth and jumped off of the 'woe is me' planet.

So...I have been lying all this time. My heat intolerance is NOT MS related. I am sorry. I know that it might sound dumb of me to apologise, but I did (and still maybe a little bit do) feel stupid about making such a fuss over being so hot all the time. However, it's not all in my head. It's not normal. And really what I am hoping is that the thyroxine is going to help with my heat sensitivity/intolerance/whatevs. I just need to wait about 5 weeks for it to really kick in.

If it DOES improve, I will be a new person. Seriously. This heat thing is a massive stressor for me. Just ask M.

I think that's enough for today, don't you?

No. New. Lesions.

That is all.

Would you like Hypothyroidism with your Multiple Sclerosis?

This week I have been in Sydney.
My trip has primarily been for the purpose of getting a delightful MRI followed by a thrilling neuro appointment and initially concluded by a visit to a dermatologist.
With these things and stuff in mind, it has been somewhat difficult to entirely enjoy my time here in my beloved Sydney town. I was explaining how I feel to M. He put it exactly how I couldn't. It's like I am not allowed to enjoy my time here. It's a business trip. It's not for fun. Don't get me wrong! I have had a lovely time. It was fortunate that M finished up a thingy for work here just as I entered the state. So, selfishly, I have been enjoying my time with M, enjoying Sydney town together.
So the MRI was fine. It's not great fun. I mean, they (those people) put this plastic kinda cage type thing over my head when I'm laying on the tube bed (all the correct metalanguage used in this blog!). It's not a cage but it's like I'm going into battle or others are being protected from me. Yes, much like a dog - don't worry, I thought that also.
But the best bit this time for me, was the injecting of the dye which highlights active lesions. I have to mention here that in the morning on this day, I waited for an hour (irrelevant detail there but an opportunity to whinge) to get a blood test to see if I really needed to see a dermatologist. The blood taking person struggled to find a vein. It took about 5 mins and a few different strategies to get it and when she put the needle in my arm, she had to wiggle it (just a little bit - sorry another song reference) to finally reach the vein, and drain. Back to the dye injecting story...you can imagine how excited I was when the MRI man said it was time to inject the dye. Please veins, show yourselves! But no such luck. I even drank so much fucking water alllll morning. So he tried the usual injecting spot (what is that bit called? The bum of your elbow or something?). Then he moved to my hand. Um, ouch! Tried one vein twice, then finally, painful success. The cage was on my head throughout this vein finding ordeal. Yukkiness.
I know I make it sound like some crazy horrific experience. It wasn't. I'm now quite brave with stuff. I know many people go through truly horrific medical experiences. I don't consider myself to be one of those people, at all.
Let us revisit the blood test. That was Tuesday morning, then comes Wednesday evening pre dinner time. I got a call from the wonderful Dr B. He had news from my results. I have an underactive thyroid (aka hypothyroidism). Whhhhhhhyyyy!!!!????? For fuck's sake. Really? Okay, so it means more medication. Low dose to start. At least my hair might stop falling out. At least I might stop looking pasty in the face. At least I might even get some energy back!
What do you think I did when I heard the news? Yup. You guessed it...hello google! When will I learn?
I'm just annoyed. Y'know?
So I cancelled my dermatologist appointment. Instead I'm eating 50micrograms of thyroxine each day, on an empty stomach. The damn stuff also needs to be refrigerated. Luckily I have experience with refrigerating medication already, so it's annoyance will not create a huge impact. Then will come a blood test in 6 weeks to see if my levels are where they should be. Have you googled it yet? It's really not what I need. It's not ideal.
Meanwhile, I am concerned about my poor liver. Again.
Further to all this...I see the neurologist tomorrow. It's definitely been on my mind. But even more so as it gets closer.
I began by being all cool, calm and collected. Yeah like I'll go along, touch base, tell him about my weird one eye open and my thumb thing, he'll check over my latest MRI, tell me I'm going well and my Rebif is doing what it should and to conclude he can tell me my liver is all good.
In a perfect world, I would like him to tell me that I'm going to be fine and that my MS is magically disappearing and that I'm so totally healthy.
That won't happen.
I'm nervous.
I'm scared.
I want to be brave.
I want it to be okay.
Do I think positive, only to be disappointed with negative news?
Or do I set myself up for disappointment to then be comforted by being told things are not that bad?
P.S This post was typed entirely on my iPhone. I surprise myself at the patience I possess typing with just my right forefinger.

One year on and...

It was one year ago today that I was (officially) diagnosed with Multiple Sclerosis (aka Mad Sascha).

What does this mean? I can do some math? I have a pretty top notch memory (Oh hell yeah I do, just ask M)? I have an excuse to write a post? I can reminisce on what a year it has been and try not to sing those words to the melody of an Alex Lloyd tune? Is it an opportunity for Hallmark to suck you in to buying a new card especially created for these moments where someone special you know has managed to make it that extra year with a chronic illness after being diagnosed, just so they (Hallmark and others) can make some more mulla for making us feel like we HAVE to remember yet another 'anniversary' or celebration or mile stone of time? No.

People...it really doesn't mean much. Sure I can use it as an excuse to write this. But I really just feel a little jolly due to tomorrow being the last day of a term that I have to experience in D-Town, ever! High fives man.

Now, a 'relapse', as they are referred to, generally means (to my understanding my fellow Australians - Fanta Pants reference there) a *new* symptom that has been experienced for more than 24 hours. Something along those lines anyway. I also understand a relapse to be the coming back (and they scream, "I am here! Do not forget me!") of old symptoms, but coming back with a bit more vengeance. Worse than before. More poo poo than the last time. Hence the slow debilitating nature of the stupid illness (ya bastard!).

If we take these 'definitions' and have a looksie at the past year...I technically have no had a relapse in a year. Bring out the party poppers!

Sure, I've had the thumb moving thing, but it was over a two day period where it was on and off...not constant.

I also had the weird one eye wide open caper going on. But again...it happened twice. One minute each time and has not occurred since.

However, let's not be overly positive here...I still have MS and I will confirm with my neurologist come Monday week, whether or not these two 'episodes' would be considered a 'relapse'. I'll get back to you about that.

So yay me?

Untitled #1

No news is good news.

This is why I haven't posted for such a while. Yay!

I have been busy with a few things recently.

I met up with a bunch of other women who also have MS, who live in D-Town and surrounds. That was nice. The croissant and smoothie I had were tremendously over priced for what they were and the wait was ridiculous, but that's D-Town for you.

I conquered a fear. The dentist. Had a wisdom tooth yanked. It was a tad traumatic. She lied to me. The dentist. She said I would be okay to go back to work. I was not. It's been 3 full days since, and I am still looking like a puffer fish - though the puffiness has subsided somewhat, and the pain no longer requires heavy killers of it. I have a feeling that it was part of her strategy to get me in for the removal by lying. I have already forgiven her though. So we won't dwell.

I have painted a few paintings.

I have written my reports.

Attended an atrociously bad, poor, not useful at all, professional development day.

I also tried to organise to see a dermatologist to ask about a few things. I had a referral from my GP. BUT a 6 month wait is what it will take to see the one and only dermatologist in Darwin. Ha! In your face Sascha! Is that not out of this world ridiculous? So I currently have my mum on the case with Mr B 'down south', to try and get something sorted when I am there.

A few weeks back I received a parcel in the mail from an old high school friend. She has been reading my blog and when she read about my one eye wide open, contacted me for my address to post me samples of eye drops she highly recommended. And she did deliver. Thank you Katie! What a generous and kind thing to do - especially considering we haven't seen one another in probably...15 years! What a gem.

Oh yes, I am going to Sydney for 10 days. And it couldn't come soon enough. I leave in less than a week. CANNOT WAIT to get away from this feral heat and sleep under a doona.

I also have an MRI of the brain and cervical spine and then an appointment with my neurologist almost a week later. So in a few weeks time, I will have plenty of things to tell you all about. Think positive for me won't you now? Think: "No new lesions". Cheers.

Until then...be good kids!

The Sciencey Psych

Earlier this week I saw a new psychologist, a clinical psychologist. It was good.

As expected, it was full of sciencey stuff, which (I can't believe I am about to admit this) was really interesting and made things (and thoughts) make sense. It was logical.

My short 50 minute session was sped up a little to the usual 3 hour initial session the psychologist does in his private practice. I think I kept up well.

He drew pictures and used different coloured whiteboard markers on a whiteboard (der) to compliment his explanations of how we think. I became a student, a well behaved one who listened intently to every word. Of course, I was only getting the basics, but I walked away with a lot of new knowledge about how we think.

I am not going to relay the conversation had, but there was one thing that I wanted to share. And that is about a dirty word. This dirty word was one of 2 dirty words that the psych spoke about. Dirty word. What makes a word dirty? It's meaning? Context in which it is used? Most people would probably think of something sexual as being dirty. Let's say the word 'cunt'. Apologies if you're offended. It's not a pretty word. I have never been called one of these, nor have I referred to my private bits as one either. But I have certainly heard it used by students, strangers in public and yes, some of my friends. And it's NEVER used in a positive manner. But could it be? Oh hang on, perhaps someone has been called a 'funny' one of these. Meh. Who knows. ANYWAY. Let's move on...so what's the dirty word the psych was referring to?

Criticism.

Yup. That's the one. Bloody fifthly, apparently.

I don't want to mess with your minds, but quietly answer these questions in your head:

1. Have you been criticised before?
2. Did you like it?
3. Have you criticised someone else before?
4. Do you criticise yourself?

Answering the last question made me teary.

I'll this post at that.

P.S. It's really hot! (*wipes perspiration from forehead*)

Eye wide open

The title of this post is not to be confused with Gotye's tune, 'Eyes wide open'.

This is the first time I am writing a post that is a result of things that have happened in the present time. And I think I need to be careful not to take this road each day/week/month where I basically tell you about my everyday life goings on. I think that would bore the pants off of you, and I would definitely come across as being a full time whinger, as opposed to the part time whinger, which is a title I will gladly accept. Whinging can be a good release though, right?

Today is a school day, and I am not at school. Don't fret! I am not doing a dodgy, nor am I taking the day off because of a severe Mad Sascha episode, just a small one...fatigue, exhaustion, burning out.

Yesterday at work I had a little moment of panic which did prompt me to see the doc later in the day.

I was sitting in a session with students, listening to some stories of people who work for various NT Government departments. The purpose of the talk was to inform students about career paths offered, and to dispel the myth that working for a government does not mean you sit at a desk and work from a computer all day long. It was very informative I thought, even though I had to do a lot of 'shushing' to the students I saw myself near - though they decided to shut the hell up when the sporty people spoke (Typical - this is when I would have started chatting away as a student, loving sport as much as I do).

Anyways...my eye. My left eye. My left eye went weirdo on me. It was wide open. Not both eyes, just one, the left one. Got that? It was like it had some massive caffeine hit, and was suddenly wanting to take in its surroundings. I could still close my eye, which I eventually did because I knew I would look quite strange if anyone saw.

It wasn't painful, and it only lasted maybe a minute...even less. But I did not likey. Some of you may be a bit suspicious, wanting to ask if it was actually open more than the other and seeing as though I just sat there and close my eye without actually getting up and looking in a mirror. This is a good question. The thing is, this happened last week at home where I did look in the mirror and saw it for myself.

It was about a week ago and I was brushing my teeth before bed. My eyes were very tired and red, and as I mentioned in my previous post, I feel as though I am at a point where things are a bit on the low side. Mid-term blues perhaps? So already being tired, my eyes were a bit smaller. Sounds strange, but you get me.

So I am brushing my teeth and all of a sudden, my left eye is wide open. I can feel the air on my eyeball. I look up at the bathroom mirror to see my reflection and whoa! Hang the hell on! My left eye is like, 'Hello!' Hmm yes, this is strange. I opened and closed my eyes, which was easy to do. I felt no pain. I squeezed my eyes closed again to see if it would stop, then opened them again. But no, still the same one eye wide open. I closed them again, and rubbed my eyes. Eventually it went back to normal after about a minute or less. Weird!

Humour note: To try and find the funny side of this, I imagined that if it would only happen to both eyes at the same time, it would be like an instant eye lift without surgery, taking years off my face! No? Yes? Maybe?

I told M and he told me to get him next time. I agreed.

So now, at work this happens! Same feelings of the air on my eyeball and all.

I decided that I should see the GP after speaking to another staff member, an ex-nurse. If anything, I wanted it documented.

So I popped off to see the doc.

I have to mentioned that the day before was the school swimming carnival, and I was given a light duty, in the shade. I was asked if I'd be okay, and I said yes because I really thought it would be alright. I did it last year! But I do think my tolerance to heat has become worse.

After the carnival I was so tired, and this tiredness on top of already shitty sleep, and the watery red eyes I had been experiencing over the past week seemed to have made sense to the doc, in that I was suffering from exhaustion and MS related fatigue. She ordered me to take the remainder of the week off, and rest.

So here I am.

Pristine and unique? Pristiq!

More medication. Something else my liver needs to deal with. This was a concern, but of course, I was being a little paranoid. I'm good at that.

So I got a 2 week sample of Pristiq and at first I didn't think it was working. Apparently this particular anti-depressant is quick to work - quick, as in days, not weeks. Of course the full effects are not 'felt' until 4-6 weeks after starting, but Dr B said I would notice a change within a short time.

I was really doubtful. I didn't feel a difference. Plus, when you're on holidays you would expect to feel some sense of relaxation anyway. No work to worry about. Being able to see friends and family. Away from the draining heat of D-Town.

I went back to see Dr B after 2 weeks. I have to again applaud him for his total awesomeness. Dr B said he would fit in to see me at any time within the 2 weeks of trying Pristiq - all I would have to do is call, leave a message and he would call me back and see me whenever. Again...what a legend. So back to the story...I walked into his office and we had some small chit chat before I said, "I don't think it's working." He was quick to disagree. Hmmm, okay. In the words of Pauline Pantsdown, please explain? He commented on my demeanour, my face, body language, the way I was engaging in conversation (albeit small talk). He compared all these things to when I walked in the 2 weeks prior. He commented that when I came in two weeks before, I looked tired, drained, didn't smile and when I did it was awkward and fake. I was not logical in my thinking (the 'what if' mother fuckers were plaguing my trains of thought). I was negative etc.

I began to think about these comments, and yes, he was right. I was thinking better! My outlook on things and stuff was improved and my smiles became genuine. My thoughts of my MS were being dealt with in a logical manner. The things I would say, instead of people responding with, "Don't be silly", "Don't think like that" etc had turned to people agreeing with what I was saying. Does that make sense?

So I have continued on with the Pristiq.

I have never been on any kind of anti-depressant in my life. And although it is not the answer to all my anxiety issues etc, I have to say that I feel so much better. Not physically (though I don't feel too shabby), but in my thoughts and my inner voice. This is why it was hard to write my previous blog, because it has been so long since I felt that low - how great!

I do need to acknowledge that being on holidays away from stresses of D-Town did contribute to me feeling better, and now, with week 5 of term 1 over, I have been struggling a bit with my sleeping again. And Dr B did warn me that I may encounter a slump once I came back up here and began work again. And he was right. I feel I am at that point at the moment. But I have the positive outlook, deep down (hard to find at times), that I will cope. Because it's just what you do. No matter what comes your way, you deal with it as best you can, and you do cope. It sounds very Hallmark-ish. And I apologise for that. But really truly ruley, people cope. Some do not. And that is sad. But I am coping.

I have now joined the MS Society of NT and SA. And my next move to look after my mental health (besides getting out of D-Town at the end of the year), is to find a head doc (Psychologist) through the MS Society, who I can discuss my MS with. No friendly chat, just get down to business. Attack my fears surrounding MS.

Wish me luck! It might take a while...

My year of falling.

It is really difficult to think back to how unhappy and sad I became when I found out that I had (and still have!) Multiple Sclerosis.

BTW, this is a long one. Make sure you go do a wee before you sit and read it.

All of those 'what ifs' constantly entered my train of thought. It felt never ending. And it did not matter what people said to me, no matter how much they cared and loved me, my thoughts felt so concrete. They weren't going anywhere.

I would have these horrible thoughts in my head. Scenarios of the worst case. Where did these thoughts come from? Where they there before? How did I think them up all alone? It would have been a great time to try my luck at writing a horror script for Hollywood.

I think I am unsure to say, confidently, that I was a happy person before MS. And I am not sure where I am going with this, but I think a lot of my close friends would agree, that I am a very pessimistic person. It takes a lot to make me see positives. My philosophy was to prepare for the worst, and you'll never be disappointed. Makes sense, no? Before I saw the Neuro in D-Town after my first MRI, I thought the C word. It wasn't the C word, so it wasn't so disappointing to hear M and S. SEE! It makes sense to think this way. You must agree? No? Yes? You see my logic though?

What I am saying is, me being sad wasn't really something that would be considered out of the ordinary.

So when I was around people over the Christmas when M was not in the country, I had plenty of reasons to be sad. But half a year later, when M did arrive home safe, I was still sad.

I was submerged in a thick pool of 'what ifs' that kept pouring in from somewhere, and I was slowly sinking. I was full of fear. Seriously man. Everyday. Thoughts of 'what ifs'. Yuk. It was horrid. And I couldn't express how I was feeling. I just wanted to cry in a dark, cold room. I could feel my family getting frustrated for my unhappy faces and attitude. But it was how it was, my life was doomed. I didn't care that other people were upset with me. I'll just do my own fucking thing, right? And if you don't like it then meh, followed by a teenage shrug of the shoulders.

I didn't want to become a burden when I eventually find my way into a wheelchair. I didn't want to even think about having a child. I never even wanted children until I met M, then I changed my mind, but now I wanted to go back to how I felt before M, no kids. But I couldn't do that to M. We had already discussed the kid thing and we were so keen. Now I was not keen. What if I get too sick and can't care for my own child? What if I have to rely on M to do everything, and my family and his family, and there I am witnessing it all, not being able to help, because I am too unwell. What a useless mother I would make.

What if I can't work one day? Will M resent me for that? I just stay at home. Looking perfectly fine, but I can't walk, or I am too tired to even make a cup of tea.

What if I have to stop driving?

What if I can't have sex anymore?

What if everyone is just being nice to me just because I am sick? No I am not sick, sorry. Sick implies getting better! What if people are only nice to me because they pity me? Oh poor Sascha. She was such a great teacher. She painted some fantastic artworks in her time and she used to dance on the dance floor like a crazy kid. She once loved the hot weather and the beach. Sascha really enjoyed stayed out until 5am partying away.

What if I start to get spasms in my legs and I look like a freak? What if that happens at the same time I get Optic Neuritis in my right eye? A half-blind spastic. Nice.

What if I stop M from doing the things he wants to do in life? No sorry love, I can't do a hiking tour of the Himalayas - where will I put my medication? What if i get tired?

Why would M want to stay with me if all of this stuff is going to happen? And my family would only feel obliged, because they are my family. It's an unwritten law. What if they need to sell their house to help pay for something for me like some motorised mobility device?

If all this stuff is going to happen to me, then what's the point in hanging around? Why drag everyone around me into this horrible life I was going to have? Let me pull you into this deep chasm, and be sure to smash your body on every sharp, unbeautiful surface as we fall. I know 'unbeautiful' is not a word.

During 2011, I saw two female psychologists.

The first was a real doozie. My age, blondie/red hair, glasses, preggas. The first session is all about getting to know me I suppose. My background, things that have happened and are happening in my life. Okay, yeah cool. But next session can we use the time a little better so I am not paying you hundreds of dollars just so I can talk about myself? Yeah, cheers thanks.

The following sessions were based around meditation and shit. Yes. Sorry. It was shit. I understand that meditation is beneficial, but sorry, not enough to get me out of this rut lady. So I ended up cancelling my other sessions.

The second one was much better. A bit of CBT. Cognitive behavioural therapy. Sounds so serious huh? Well it was. In a way. I got some homework that didn't involve 'breathing'. Reading stuff and what not. Anyway, it was good. And some of it was useful. But in the later sessions (I think I had about 7 or so all up) we kept going over the same things and it was then that she suggested I speak to my GP about some medication for my anxiety. She said that I was obsessively worrying. I thought that was pretty accurate.

That was the last session with her. She said we had one more in January if I wanted it. But I might be okay after the holidays. HANG ON. You have just told me something that we could probably work on, but now you don't want to pencil me in for one more session? Wtf?

No worries. I am not ashamed. But man, it was difficult getting some sleeping pills for my Sad Sundays a few months prior, so I am not sure how I am going to go with some anti-anxiety meds.

I saw the GP. She put me on Beta-Blockers. What a waste of time. I felt more anxious about what they were doing to me, and that was just another thing to add to my worry list. "Do not stop them suddenly". Okay doc, thanks for giving me visions of having a heart attack or some other related heart emergency. She was also hesitant on the dosage. "One pill per day...no, no, start with half". Jesus fucking christ. She is a nice doc though. She will put her hand on my shoulder or arm for a bit of comfort. Maybe all my reactions were related to my anxiety.

For a few weeks, I took these stupid red coated things. My heart rate slowed down. Just as long as it doesn't stop, I will be okay. Add that to the list!

I got sick of them. They were not helping. So before leaving D-Town for Sydney, I booked in with the lovely Dr B. Legend.

I saw Dr B. I spoke to him about the GP in D-Town and the psych.

He suggested I start on an anti-depressant called Pristiq. He explained to me, with illustrations and all, about anxiety and depression. He clearly explained to me what this drug does. He explained how I might feel when I first take them, and how I might feel if I miss a dose. He explained that I should join the MS Society in NT to try and seek out a psychologist who I can talk to about my diagnosis - not just have a nice chat about life and stuff and things. I explained that the MS Society is NT and SA combined, and that it is utter rubbish.

Okay, so time for a new drug...

MS is a blessing? Double you, tea, eff! (a small rant)

So I just finished this great book by Marlo Donato Parmelee, called 'Awkward Bitch:My life with MS'. If you have a kindle, buy it! It's a few bucks. It is a true story about the author's journey to discovering that she had MS and how she dealt with it. There were definitely parts of the book that I could relate to, and I would LOL at times. Her MS is different to mine and from what I read, I am extremely lucky (so far - knock on wood x 3). It was very funny and is probably the best book I have read in a long time.

Okay, let's be honest here. I hate reading. I like books with pictures. BUT I have read a few in my time, and I really struggled to put this one down. I bought it and started it last year, and kind of forgot about it over Christmas and all that crap. Then once I started my blog, I picked it back up, well I picked up my kindle and turned it on.

ANYWAY, this is not First Tuesday Book Club!

I wanted to try and find similar books. MS stories that weren't all doom and gloom, woe is me, the end is nigh, blah. I really enjoyed the humour of 'Awkward Bitch'. Surely there are other reads like it! Even stories of individuals with other chronic illnesses! I found comfort in knowing that others in a similar situation shared the same thoughts and frustrations. Anyway...as I was saying, surely there are other reads like this one...

Think again.

I sat in bed, so very disappointed that I had finished the book. So I searched for others on my kindle.

There was all the usual crap about diet and all about being healthy, books for medical professionals, all sciencey and shit etc.

I then began noticing some book titles that really troubled me. I found one titled, 'Blessed With MS: How God Used Multiple Sclerosis to Save My Life' and another, 'Our Blessing...Multiple Sclerosis'.

It really fucked me off. Am I being completely judgemental about other people's stories of MS? Perhaps. But c'mon! (Sorry if you are offended by my reaction, but I just wonder how many vulnerable people these books have sucked in. It really doesn't wash well with me, obviously)

Having MS is NOT a blessing.

The end.

A few points about MS, from my perspective

The following is purely a reflection of MY understanding of stuff and things about Multiple Sclerosis that I have found interesting and important or that may affect me personally.


A few things about Multiple Sclerosis that you may or may not know or realise:


- There is no cure for MS.


- The disease course of MS is different for everyone who has it, and it is therefore unpredictable. One thing is certain, someone with MS with not get better from it. But in saying this, most individuals with MS can lead a 'normal' life.


- Although the physical aspect of the disease is evident on the brain (and the spinal cord) in the way of scars (aka sclerosis), people with MS do not 'lose their mind', so to speak. The cognitive symptoms of MS can cause people with MS to become forgetful ("Um why did I open the fridge for again?") or to be slow in their thinking processes. We do not become dumber or lose our 'smarts'.


- Women with MS can have children. In fact, it is less likely that a woman will relapse while she is pregnant. There is a heightened risk in the first trimester, and towards the very end, but all in all women with MS when pregnant find they get no relapses, or they are very very mild. So women with MS can keep popping out the kiddies to avoid relapses (although I do not believe this is a recommended form of MS management).
- Yay, get preggas! Okay, but, there is a heightened risk AFTER the birth, of a relapse. If you find any of this info online that has an accompanying graph (Love a good graph!), you will notice a dramatic spike upwards in the likelihood of relapse (within the first 3 months post-baby pop out). BUT, this is followed by a drop, back to the 'likely' course of continued, slow progression of the disease/illness/whatevers.


- MS tends to be an 'invisible' disease. This means that people will have the perception that I am totally healthy, when in fact I may be suffering from MS related symptoms. For me, they might be fatigue, heat sensitivity, twitching of muscles (or the thumb dance), tingling in the legs and that damn left pinky and up to the elbow and a weakened left knee.


- Exercise and heat can bring back some symptoms temporarily, and recently I have read that getting a cold/flu can also wake Mad Sascha. This latter is not well documented, and there is a bit of debate about things like the flu vaccine being recommended to those with MS, but then some people with MS have their own story saying that the vaccine bought on their MS...debate debate!


- Individuals are typically diagnosed with MS between the ages of 20 and 40 years of age - when individuals are in the 'prime' of their lives. Going to uni, establishing a career, starting a family, planning a life etc. This 'news' can result in depression and/or anxiety. Individuals diagnosed grieve. They grieve the loss of their 'old' self, and they need to adjust to the 'new' self. For example, the idea of travel began to appeal for me, but now I need to rethink this because of stupid things like travel insurance, travelling with medication that requires refrigeration, negating activities that may exacerbate symptoms etc. I will not be covered by travel insurance for any medical issues that are a result of my MS. The likelihood of having a relapse might be low however, Mad Sascha is unpredictable, so it cannot be ruled out. And this can elevate anxiety. Plus, holidays are meant to be fun and relaxing, but how can you be that way when you feel anxious about what might happen?

- Depression and anxiety can also be a direct result of the lesions on the brain - depending where those lesions are. Some people can suffer from uncontrollable laughing or crying which are not prompted by a scenario where crying or laughing would be expected. The lesions can also affect moodiness. I used to be a real moody bitch - though I think I am better than I used to be! (Hopefully some of you who have known me since school would agree!)

- Now for something more positive. MS is manageable. And I am managing :-)


- There is a large percentage of individuals with MS who require the possession of a walking device by age 40. If I ever need a walking stick or device, I hope there are some cool ones out there! Something hip. Colourful perhaps with an interesting shape? Oh geez. If not, maybe it can be my one and only business venture!


- It is estimated that 21 000 Australians have MS (according to the MS Society).


- MS can affect balance. So when you see me stumble a little, or bump into something, it is not because I am a closet alcoholic. If you see bruises over my shins and legs, it's probably because I got my clumsy Mad Sascha on and bumped into shit. It doesn't cause much drama for me but it's just a small annoyance.


- MS does not make you lose weight. I say this, because when I was on my lose weight idea, people would say, "Oh you look great", followed by a moment of panic and a whisper asking me if it was a result of the MS. NO! I worked my ass off to lose the weight. Geez. If anything, people with MS find it difficult to control weight if they have symptoms involving their movement and/or coordination, therefore making it difficult to exercise.

- That is all I can think of for now! I will keep adding others when they come to mind.

Thumb up. Thumb down. Thumb dancing around.

You may have come to this post expecting to hear about my fun trip to the Haematologist. But before I post about her (Haema, let's call her), there are many other bits and pieces to be covered.

I guess my blog now is coming closer to the present time.

So before Haema, Alexia leaves and M returns.

And as much as M is a big part of my life, my best friend and my concrete support/rock/anchor, I do not want to focus on him (Sorry M) in this blog. Simply know, that he has returned somewhere mid 2011. From then on he is on bot bot (injecting the Rebif in the top of my bottom) duty every few weeks. And what a stellar job he does. It's very nice to have a break from injecting myself. There was a period of time in the latter part of 2011 where I was just really sick of doing it and I would put it off because it felt like such a chore.

I also have to say here that I am very grateful for my dear sis to have stayed with me for a while when M was away. Although there were arguments and she was annoying (Love you Alexia), it was great to be annoyed. It really was. Oh and there were some goods times of course. I was probably a bitch sometimes. Yes. True. I know. Can you imagine? But, in my defence, I was not in a good way most of the time.

So things are back to usual in the home space. Neighbours is on. M makes comments about the poor acting and unrealistic events, yet I know he secretly loves watching it. It's my time to escape and not think. You know? Yes. You know. You probably do it with Big Bang Theory or something similar.

Anyways, M and I are relaxing after a hard day's work. I think it was a Wednesday. Wednesday's must be cursed. Wednesday's are good though, as it's hump day and the weekend is closer now than it was.

For me, Wednesday's were massive. All classes on, followed by a staff meeting (and gym if I was up for it - BTW, I reached my goal of losing 15kgs). You get what I am saying right? So we are taking it easy lying on the couch and then I feel that my left thumb is weird. I look down. It's moving. It's fucking moving by itself. Twitching.

I feel a panic come over me. It's not constant, but it was sometimes. Like for a few good seconds, maybe 5. Then a 2 second break, then 4 seconds of twitching, then maybe 10 seconds of a break. Unpredictable. Again. Why? I do not like! I do not likey like at all!

I show M. I am unsure as to how much M has taken in the whole MS thing and the possible symptoms that could occur. I don't think he realised straight away that this is Mad Sascha coming out to play. "It's the MS" I said. I wanted to cry. There was my thumb, just moving alone. I watched it. I told it to stop. It did not stop. Freaking. I was a spastic. Literally. It was a small bout of spasticity.

After a few minutes it 'calmed down'. But I was on high alert to see if it happened again. It kinda did, but not as intensely.

The next morning, I drove to work and it was doing it again. I had a little tear sesh in the car. No sobbing, just a few tears. I had mascara on anyways so that stopped me from flooding Palmerston. Again, the twitching was intermittent.

The rest of the day and part of the next morning saw some more thumb twitching. A new symptom that I had not had at all. I sometimes had felt muscle parts twitch in my leg, bum and arms, but not like this. This was constant, even if only in small doses.

The thumb twitching was late September 2011. I haven't had the same symptom since, but I was very paranoid at the time about it being the start of a relapse or the start of a whole new chapter of Mad Sascha. I got confused though. Would just that few days of thumb twitching be considered a relapse? Or is a relapse when my old faithful symptoms find their way back? Am I ever going to get my head around this stupid, annoying illness?!

Rebif - enemy or not?

When beginning Rebif there is a titration period. Ladies and gentlemen, this has nothing to do with tits. It means that you begin on a lower dose and gradually make your way up to the full dosage over several weeks. The machine takes care of the injection amounts during this titration period.

So Monday afternoon arrives and it's time for me to stab myself in one of the suggested sites. Tops of the thighs, stomach (upper and lower), back of the arm (awkward and haven't been there yet) or on top of the bot bot (bottom - too difficult to do alone).

I prepare myself with all the bits and pieces I need. The Rebismart machine, needle, needle disposal thing, cotton wipe, Witch Hazel and the cool pack. I gather all these and take a seat on the couch. I place the cool pack on my right thigh and lay down for a while. It's all good. I am calm. Diabetics do this stuff all the time!

I nervously follow the prompts on the machine and do everything slowly, calmly and carefully........I inject. Pft! That didn't even hurt! Awesome. Great! No pain really, just the feeling of the needle going in and coming out but it was so quick and easy. I can do this forever! No worries.

I took some panadol as suggested, to avoid the cold and flu like symptoms.

And there you have it.

As I go through the titration period, I get brave and stop taking panadol. After all, I need to make sure I don't give my liver too much work, and taking panadol (paracetamol) 3 times a week isn't really a habit I want to give in to. I got no cold and flu symptoms and reported this back to Karen. She was really pleased.

I get up to the full dose of Rebif and it does take a bit longer now to inject, and it can sting a little when it is going in, but really I feel so confident about this drug. I have had none of the side effects related to cold and flu, just some redness and itchiness around the injection sites. Nothing I can't handle! Or so it seemed...

I take my medication every Monday, Tuesday and Wednesday evenings. One Wednesday evening, I went about my Rebif routine.

Come 9pm, I start feeling feverish. Oh great, I am getting sick. This sucks. I haven't been sick for ages! Mid-week too. And Thursdays at work are hectic, two doubles of year 9s. It's okay. I will drink lots of water and OJ (do your stuff Vit C) and get to bed early so my body can fight it off before it really begins.

I get to bed. I get worse. Sweating. Shivers. Cold. Hot. Sheet on. Sheet off. Air con on. Air con off. I'm getting worse. Weird dreams too. Tossing and turning. Cannot get comfy. I convinced myself that I was getting bronchitis or something because I also had a sore throat.

I got up at some dark hour, and I SMSed work to say that I was getting sick and running a fever blah blah blah so I won't be in. I sat up and emailed some work through while I waited for the paracetamol to kick in.

I eventually got to sleep after my fever fizzled out.

I woke up.

I felt fine.

Yes, I did sleep in, this is true. But the sore throat was gone. No fever. Nothing. Just normal. I went to the doctor anyway, to at least get a medical certificate.

The doc confirmed, I had had my first cold and flu like symptom side effects from Rebif.

NOOOOOO! But I had come so far without ANY side effects. Why now? My relationship with Rebif was going great guns. This is stupid. Is it going to be that bad every time now? Well no Sascha, it's not. It is common for this to happen when on Rebif, particularly in the first 6 months of treatment, so relax would you? And think about all the stuff you have been told, and the things you have read, and don't freak out. Ok? Ok.

From then on, I did take paracetamol after my injection. It did ward off the cold and flu like side effects that I had experienced and I didn't have to take another day off work because of those symptoms. This was okay, expect I worried about my liver. My regular blood tests (every 4-6 weeks) for liver function and blood cell count had been a bit up here and there. The blood counts were fine, but the liver function was not great, but nothing to panic about as it is expected that they rise while my body gets used to the drug, Rebif.

I was a bit angry with my body for not accepting Rebif. I did not want to have to try some other drug. This played on my mind a lot. And every time I got each of my blood tests back, I got nervous. I googled stuff (Yup, still haven't learnt to stop that). But I was also having my results faxed to Dr S, and I thought, well, if he was concerned, he would call. He had called once before after my first blood test since starting Rebif. I didn't get a chance to talk to him, but he left a message to say that I should keep going and that he was not concerned. This gave me some relief, but not enough. Probably because the GP I was seeing was freaking out. "I am concerned" she said. Well alright. You know Dr S is getting my results too and he hasn't called, so I am sure it's fine. Hang on. Shouldn't she be the one saying this to me? Oh fuck I don't know.

Sorry, I am realising what a long post this is. Oh well. Thanks for stickin' around!

I got to a point where I really wanted to stop taking paracetamol after every injection. So I stopped. And to my surprise, some nights I got no reaction, but unfortunately others I would feel like 2 day old dog poo stuck in the crevices of a smelly wet boot. Not only do I have this unpredictable illness, but the medication I am on for it is also unpredictable. Help me universe!

I did suffer through some awful nights of fever and sweats and chills etc, but others, I felt normal.

I also cut down on my drinking of alcohol a lot. Actually, being in D-Town with the weather how it is (hot - ALL the time), drinking was not really something that I wanted to do, unless I was guaranteed the best air conditioning conditions. But it was also because, again, I did not want my liver to become a workaholic and crash.

My results from the blood tests were still coming back elevated.

The doc referred me to a Haematologist.

Meeting my injector

It was the Friday directly following the Monday of the official diagnosis. This Friday I was going to grab the train up to Sydney, check into a hotel I had booked for Alexia and myself, then head to a great little pub in Glebe for my (pre) 30th Birthday celebrations.

But before all that exciting stuff, I needed to wait for the Rebif nurse to arrive at mum's to show me how I will be injecting myself with the disease modifying drug for, potentially, the rest of my time on this Earth. A very different kind of excitement.

Karen rocked up with a bag full of stuff. Rebif stuff. Tea was made, as was small talk. Then it was down to business.

I met Rebismart. The machine that would do lots of things for me. Now, when I say 'machine', it's no larger than the size of my hand. Here is a pic taken from the www.

Now, to explain. The large thing is Rebismart's home. The home also has pictured the needles on the left. The thing in the middle is the machine. And finally on the right is a month's worth of the drug itself, Rebif.

Karen said the needles used are very small and are barely detectable at airport xray thingy machines. Phew! But I was more concerned about the pain of the thing going into my body.

Karen took out a bit of fake skin. It felt weird, but very realistic. She then showed me how to put the Rebif cartridges into the machine. Easy peasy so far. The Rebismart machine basically prompts you along the entire time. It would be very hard to screw it up.

She then showed me the skin senors on the bottom of the machine. The machine will not inject unless on skin, and it will stop injecting if contact with the skin is lost. Okay cool.

Then it was time to inject the fake skin! Oh geez. Here we go.

I pressed the inject button, located at the top of the machine which lights up green when it comes into contact with the skin signalling to go go go! I pressed it. Some noises happen - nothing offensive though. And yeah, that's it. A few more boring parts where the needle comes out and I out it into my very own needle disposal container - one piece of equipment that really made me feel right at druggie home.

So after my training, it was my turn. BUT I mentioned that I would be heading up to Sydney for an organised birthday do. Because of the possible side effects of Rebif, Karen recommended that I wait until the following week. It was all a bit of an anti-climax. It meant that I would have to do my first injection alone. Hmmm. I can do it!

Karen gave me some pointers to avoid possible side effects:

- Cool the area where you plan to inject.
- Let the Rebif come to room temp before injecting (it otherwise must be kept cool and away from light).
- Gently massage the area after injecting, then place a cool pack on the injection site.
- Wipe over the site with Witch Hazel after injecting.
- Inject in the evening.
- Take panadol after an injection.

All of these tips were to avoid injection site reactions and avoid cold and flu symptoms. So many new things to remember. I was glad I had mum there to also hear everything, in case I forgot. But looking back, I think I did a pretty good job of absorbing all this new information. Go me.

I made my way up to Sydney and met up at the hotel with Alexia. I was exhausted, so I attempted to have a nap while Alexia went for a little shop.

My nap was quite unsuccessful. Too much going on in my head. An overload of information mixed with waves of horrendous negative emotions. And on top of that, I knew I had to go back to D-Town in a few days time and I did not want to. I wanted to stay in the safe surrounds of Sydney with my friends and family.

With the unsuccessful nap, I still managed to try and look like I was ready to celebrate.

It was a great night and although I deeply missed M. But it was almost mid April now, and he was due home soon.

After all the fun, and a few more other social activities, it was time to fly back to D-Town and face term 2, and to use my Rebismart for the first time, proper.

Monday, April 4th, 2011 - My official diagnosis

I was in no way rejoicing after leaving Dr S's, but I did feel a bit better. Mum and I walked down to the MRI section of the public hospital and I booked in my second MRI for April. How excitement. Then mum and I went to have lunch at the Fringe Bar. I had a salad with haloumi in it. It was yum. We also met up for a short time with my mate Dan. He told me about N's illness and suggested I contact her. Apparently what she has can sometimes be misdiagnosed as MS. N has Mixed Connective Tissue Disorder. Why do these things happen to such beautiful souls like N?

At this point, I only really had the weirdo feelings going on in my left pinky, up the side to my elbow. And even that was beginning to dull. Thank goodness.

I did my best to enjoy my time in Sydney. But there were plentiful amounts of moments of sad and water pouring from the corners of my eyes. Some of these tears were shared, but they were mostly in private with...yours truly.

January, February and March passed by. There was a visit to Europe to meet up with M in that time. That was great! But travel is exhausting. I was very tired on a daily basis.

I was also planning a bit of a 30th for myself come April when in Sydney. There was no way I was going to organise something in D-Town. I'd have about 3 people rock up!

On top of that, I had a friend's wedding to get excited about too!

These kept me occupied in D-Town. As did work, and my losing weight thing.

The wedding was in the Hunter Valley a few days before my second MRI. It was beautiful! I had such a nice time, but again, getting exhausted very quickly.

I wasn't sleeping all that well, still. I blame the worrier in me. Not the warrior.

The 4th of April arrived. Mum and I got a train up to Sydney from the Gong fairly early.

Once we arrived in the MRI waiting area, I proceeded to take out all my piercings (they really need a room for this, I think I was grossing out other people) and popped a Valium. I was such a pro this time.

The MRI was as expected but the machine, unlike D-Town's, was much newer, and apparently more powerful. But it was weird, because the dude said I could keep my jeans and bra on - I had visions of my fly and bra wires lifting me up off the bed thing and attaching to the inside of the machine! This did not occur. I had to have this cage type thing placed over my head for my brain scan - ummmm, not cool. I also had dye injected into me to help expose the active lesions. The MRI crew were really nice though. I had to hit the 'panic' button once because I needed to cough. If anyone has had an MRI, you'd understand how important it is to stay as still as possible while the machine does its stuff.

MRI all done! Now to waste a few hours until my appointment with Dr S.

Wasting, wasting, wasting.

Mum and I were again warmly greeted by Dr S.

Now all the in between bits are a bit of a blur, but basically I was told, for sure, that I had Multiple Sclerosis. It was made official.

It wasn't a shock at all. It was a bit of a relief. I now realise that some people who have MS have gone years months and years before being diagnosed. I was 'lucky'.

Now time to talk drugs! Dr S recommended to go on Rebif.

It was time now, to get my head around the idea of injecting myself 3 times a week. I was going to turn into a proper, real life, drug lover.

Upon leaving Dr S, I called the Rebif nurse, and it was organised that she drop by mum's place to show me how to use Rebif and the machine that would help me inject. Just what I wanted to do before heading to Sydney for my 30th birthday celebration. NOT!

I've had MS for how long?!

I got through the next few weeks alone in D-Town. How did I do this? Well, I was kept busy at work, I got to the gym most days and on weekends and I was writing snail mail letters plus email to M when I had the chance. I was also kept occupied by keeping in contact with K - no more than usual. Our phone convos and SMS were very regular.

I had my flight booked to Sydney for the day after the school year finished. I couldn't wait to get out of the lonely tropics. But before leaving D-Town mum contacted me about organising an appointment with a Neurologist via her awesome, lovely, kind, empathetic GP, Dr B. Legend. Mum booked me in to see Dr B a few days after my Sydney arrival.

When we saw Dr B he said he had organised an appointment for me to see Dr S, the Neurologist in Sydney. The greatest thing about this was that Dr S was not only a Neurologist but he was a Neurologist who specialised in MS. Nice one.

I felt a bit anxious about seeing Dr S, because he knew so much about MS I was scared I was going to receive more info about my individual MS situation. This is a good thing right? Yeah sure, if the info is positive...but what if it was negative? 'What ifs' are real motherfuckers.

Prior to seeing Dr S, I organised with a bit of pain to have my CD of brain and cervical spine images to be posted to Dr S's office. $30 later, it arrives safely. Phew. I wasn't keen on having to get another MRI done, and I just wanted to focus on enjoying my holiday time and enjoying my Sydney.

So mum and I went to see Dr S. His PA, receptionist or whatever is a funny woman. She is nice but is a bit scary. We sat waiting in the nice waiting area, reading nice magazine, enjoying the nice air conditioning and then we were called upon.

Basically we went through the same kind of procedures as I had done with the GP, ER doc and other D-Town Neuro. A few pokes and prods, describing all the weirdo sensations, trying to match up the times as to when I had them, what parts of my body were affected yadda yadda. Writing, writing, busy writing. Then we got down to checking out the pictures of my brain (still feels yukky to look at!). This was the first time mum had seen them. She was cool and calm. The ones of my spine did not show up, so he could only speak of the brain.

He relayed a lot of info that I had already been told by the other neuro in D-Town. Stuff like, what MS is, a bit about medication and the different types of MS etc.

Dr S said I had a lot of lesions on my brain. I thought that myself, but I didn't really understand how much 'a lot' is. I told him about how some things now make sense to me. For example, I have always felt like I am tired a lot. And as most people do, you think it's work, or poor sleep or something else. You accept those excuses and get on with it. I thought maybe I was just lazy. I had lost a bit of weight since my weight loss plan. But I didn't 'feel' any 'lighter'. I do have poor sleep, often struggling to get to sleep and stay asleep. I get hot. I get hot very easily. This was definitely one symptom of MS that I strongly believe I have been suffering from for quite a while.

I remember once in Cammeray, everyone was outside, enjoying the sun, and the warm summer weather. I was very hot though, and I stayed inside. I would pop out occasionally to socialise,  but I really couldn't stand it. People were asking me what was wrong. I just made up some excuse that I was tired and feeling hot but I wouldn't go into exactly how hot. M asked me too. He was so puzzled as to why I was inside. I think he thought that something was wrong. As if I was cranky or upset. I was just plain hot. I was embarrassed about how hot I was and the sweat that seeped from my forehead and face in general. There had been many times where I felt this way. And now, it made sense. As I have mentioned before, I would often be so puzzled and curious as to why no one else looked as hot as I did.

Anyways, back to Dr S. He said something interesting, which was a bit confronting but it had its positives. He believed that I have had MS for years. 5 to 10. Hey? What? 5 to 10 years?! Shit. And this is positive how??? Well, I had many lesions on my brain, but my more serious MS symptoms had not reared their ugly head until now. Sure the fatigue and heat thing, but nothing that made me really worry enough to go to ER and then have an MRI. So the progression of my MS must be slow. Therefore I was not considered to suffer from Progressive MS types. If you have read up on MS at all, you may have come across these types. They are faster. It is extremely sad and my heart goes out to anyone who has or knows someone with this type of MS. It is so unfair.

Due to Dr S's idea/theory that I have had MS for many years, I was able to get the drugs on the 'compassionate usage schemes' instead of waiting for an official diagnosis after a second MRI 3-6 months later. But the question was posed by Dr S, "Do you want to start to inject yourself every other day?". He said that waiting a few months before starting any medication would not affect the stage of MS that I was at. So mum and I declined the drugs.

We picked up a booklet from Dr S, including an article vitamin D. Sun is good, pity I get so bloody hot! I booked another appointment for April, which would be the next time I'd be in Sydney.

Then we left.

The start of the sinking in

When I told mum over the phone, I still was fine, calm even. I retold her everything I could remember from what the neuro told me. How MS is manageable, the medications, the whole thing about having another MRI after 3-6 months time blah blah blah. Mum seemed calm too. Shock maybe?


So after I got to my car, I started to drive to the gym. I got an SMS. It was from mum. She said she doesn't think she is okay with it. Well why would you be okay with it? It's not okay. It's shit.


I pulled over and called her up. There were tears on both ends. The realisation of this news was beginning to now sink in for me. I assured mum that things would be fine and we will cope and she reciprocated these thoughts. What other options did I have? There are no high cliffs in D-Town to jump off.


I emailed M, and asked him to call when he had an opportunity. I wasn't going to break the news in an email. So I waited patiently for his call.


Meanwhile, I got onto google. Why didn't google tell me my weirdo feelings could have been MS? NONE of my self diagnosis attempts even mentioned MS. Lesson learnt. But I wasn't trying to seek a second self-opinion. I wanted to know more about what MS was.


So I googled MS. Loads of info. Lists of possible symptoms. Combining the info I was reading and what I had been told by the neuro, I understood what was happening and why I had all these asymmetrical weirdo symptoms. So there was a bit of a relief I suppose. With anything medical, when you find out what is wrong, then you can make attempts to understand and as a result, things aren't as scary. Or are they? I guess it depends on what illness you have. I wasn't scared yet.


One of the most frustrating things about MS is that it is unpredictable. The only thing certain, is that I was not going to get better. It is very slow (in most cases). In my case, it is slow. The medications out there assist in slowing the progression of the disease too (yay!). But at this stage, I was still considered undiagnosed. I just had to put up with symptoms I currently had and get on with life.


One thing that made sense to me when I was reading up on MS, was the sensitivity to heat. I thought I was just a freak all this time. A sweaty hot person. But now, I can understand. And all those times I thought to myself, "Shit it's hot. I am so hot. Why does no one else look as hot? Am I the only one?" Yes Sascha. Others may be hot, but you are a different hot. More about this hot topic in upcoming posts as it is a significant symptom for me.


I called dad. I told him. He was upset. I could hear it in his voice. "Oh Sascha". Tears again.


I called K. My bestie. She handled it well. She was upset, but dealt with it very well. We made jokes. We talked about Susan from Neighbours. K is THE BEST at bringing in humour to conquer sadness. We referred to my MS as Mad Sascha. So that is what I would call my MS with K from then on. "Oh Mad Sascha is being a bitch today" or "Mad Sascha is alright, I think she might be leaving soon". Perfect title for my blog too!


M rang. I told him. I cried. He was awesome. It was SO hard with him being so far away. And I knew it would be months until I saw him again. I needed a hug. Fucking hell. I really needed that hug from M.


I had to do a bit of explaining when I told M, K and the fam. MS 101 basics. I was confident that they would all do their own research to see how they could help, and to try and understand.


M probably could have come home. But it was not necessary. I was hardcore. Concrete was now a staple in my life and I would need to drink it every day for a while.


They ALL offered to fly up to see me. Mum, dad and K. But I was due to fly to Sydney in only a few weeks. So I declined all of their offers. But now, I kinda wish that I said yes to K. Mum and dad would have made it way too emotional for me. I probably needed some doses of K. All this is easily said after the fact.


One thing M did say to me over the phone, that still brings tears to my eyes today, is that he would push me around in a wheelchair if he had to. This meant SO much to me.


Now I had to somehow pass the time until I got to Sydney. Alone. CRAP. Will my head get any rest from mad thoughts?