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?