The drugs do work!

Sometimes the anticipation of waiting for the results of an MRI make me completely numb.

Just tell me straight up...are the drugs working as intended, or is it not a case of 'third time lucky'?

YES! No new lesions.

What a hectic few months.

Here I am getting my 6th infusion, only a few days before our house is being packed up and we make our way to Radelaide.

To be honest, I was not too surprised about my results. I haven't had a relapse for a long time - although the last MRI showed progression (damn you Mad Sascha!) but I had zero physical real life here and now, there and present symptoms. That was infuriating.

I was, however, sick for a good 2 weeks. First with laryngitis which is far from ideal when you're a teacher who likes to be heard between the classroom walls. Then too closely followed by a bout of parapertussis. Say what? It's a less severe and shorter lived strain of whooping cough. That was a lonely 2 weeks in the spare room!

The most stressful thing that has been going on is my agonising over having no work next year, after all the preparation needed from the administrative side of becoming a newly registered teacher in SA. (Plus leaving an amazing workplace!). Mad Sascha made it worse. I mentioned her in the process because...because I am too fucking honest. The registration board called me and asked me questions in a seriously awkward manner. The woman was trying her best to be PC. "So, ahhh, Sascha, you have mentioned ahh that you can't do yard duty outside when it's very hot due to a medical condition?". All the details were in the enveloped labelled confidential addressed to the registrar, as per the the instructions, FFS. "I've got Multiple Sclerosis"

Oh god, then it just was the worst drawn out line of questioning.

"So, okay. Um, errr, Sascha do you need, any sort of, um, like ...."

"I look completely normal, and you wouldn't know I had MS"

Then her laugh suggested I had broken the ice. I'm not precious love, just spit it out.

She basically wanted to know if I needed any extra aides and stuff - again, all covered in that confidential letter to the registrar.

Oh and I am basically a 'new teacher' in their eyes as NSW is the ONLY state SA do not have a 'mutual agreement' with. Yup. Back to square one. I'll need to be observed and all that jazz. Painful.

So that was that. But hold up, there is more...

Next in line was the SA Department for Education and Child Development.

After filling out all the boxes and scanning all the certified documents ensuring they were all under 2MB then attaching them on their ancient looking clunky online application, I sent an email asking to  provide and estimate of when my the application will be processed.....oh it's been blocked. Okay thanks, why? And when were you going to let me know of this? Um, errrr, we need you to get a medical clearance from your neurologist. Again, FFS. EVEN THOUGH I HAVE BEEN TEACHING FOR ALMOST A DECADE WITH HALF THAT TIME SPENT WITH MAD SASCHA BY MY SIDE!? And the question about when I was going to be notified of this new road block? That question was avoided.

Just breathe.

So I emailed the 6 pages to my neurologist and received a letter in the mail two days later.

Your neurologist's letter is not very specific in how your MS affects your teaching.

It doesn't. My not doing duty in the direct heat is a minor, preventative modification. Again people, these details were outlined by myself in the original application.

So now, I am all good. I've paid my monies and ready to throw myself at any suitable teaching position. Come at me now. Please. Seriously.

Next drama has been the housing.

Luckily, my psychologist is a caring, amazing, intelligent and compassionate woman who was able to write me a letter outlining the need for me to live close by to my new treating specialist in Adelaide, and my in laws, and my husband's place of work, due to my anxiety (which is often thanks for Mad Sascha). An important letter that my neurologist basically refused to write. Let's not even go there right now. Let's just say my last appointment with him today was short and sharp in tone.

So at the end of it all...I'm super excited to move, but I want to be there already. And I really want a teaching gig. Like real bad.

I'm stoked I can stay on this drug Tysabri. And as long as I can stay JC Virus negative, I can stay on it for years, and avoid the rare brain infection that I freak out about.

Cheers. And thanks for taking an interest and reading.

That one day each month was today

Lindemans Kriek Lambic beer. It's bloody delicious. And I am drinking one right now. It's my treat. I worked emotionally hard today and deserve it. I've also got the smell of a flavoursome prawn curry being cooked by the husband making my nose dance and jiggle.

Today was my SECOND Tysabri infusion.

Where was my post after the first? Well, to be honest it wasn't the greatest experience. I was so anxious and the 2mg valium I took beforehand didn't even touch the sides. M was there by my side and his hand got a little squished as the cannula was inserted. It hurt. It stung. It was uncomfortable the entire time. Then I was on constant edge throughout the whole infusion...all 2 hours of it, plus the extra observation times either side. Lots of freaking out was happening in my head.

I have the second infusion today which went a lot smoother than the first time. I knew to give myself time to get my prescription, though it took me no time this time, but lots of time last time. I took a 5mg valium half an hour before my appointment (last time I took it too late - not that it did anything!). And I asked for a heat pack as soon as I got there.

The cannula insertion was a lot less horrid. M and I chatted away and I only noticed the start of the infusion itself after the fact. A lot less drama.

The PML thoughts were short lived this time. The valium sure did help.

I tell you what...nurses are fucking legends. Love them.

All in all, I am glad it's over for another month.

Excuse me, dinner's ready.

Third time lucky?

Today I had an appointment with my neurologist to get my MRI results. Now before I go there, I must rewind to just under 2 months ago...

Now because I need an MRI of my cervical spine AND brain (with contrast dye), I was required to attend each MRI on separate days (something to do with Medicare). This was fine, as I had my cervical spine done in the holidays of an evening, then the brain was booked in about a week later during the day.

Brain MRI
Round 1 - It was a Tuesday. It was that Tuesday in early May where we had that storm cell whip up craziness all over Sydney. I had organised a half day at work, and needed to be at the hospital at 9:45am for a 10am MRI. So I allow myself an hour and a quarter to drive there. It took me over 30 minutes to reach halfway at which point my GPS arrival time was starting to dramatically increase. I began to feel anxious (those more than nervous type anxious feelings). So I made the decision to post-pone my appointment, turn around and head home before heading to work. A bit of a waste of a sick day, but probably the safer, less stressful option!

Round 2 - I re-booked for a Monday, but then changed it soon after to a Saturday so I could avoid taking a day off at my new teaching job (which is going great guns btw). So I rock up on the Saturday. I drink a shit ton of water, to help with the vein finding. This plan fails. I got a jab in my HAND, then in my inner elbow with zero success and maximum uncomfortable-ness. We even had heat packs going. Three in fact! And no love. They insisted that I must come during the week (what I wanted to avoid), when they can find a vein via an ultrasound. They called Monday, and there I was again on Tuesday.

Round 3 - First thing's first - I bought myself a salted caramel macaron from Zumbo's at the QVB before bussing it up Oxford St. It was divine. I arrive at St Vincents and am taken into the semi-dark room and into a gown ready for a vein to be found! Again, stabbed twice. With the second having success. I need to have a whinge...there were 3 people in there with me and I had made it clear that I had anxiety but they were all so silent! Why? Talk to me people! This is not fun! As the dude was about to try the second time, I couldn't hold back..."Can someone please talk so I am distracted and I can stop experiencing these disturbing visuals of what's happening in my arm?" They talk and distract me successfully while the cannula enters without going straight through my tiny, crappy veins.

So 'next time' I need contrast dye, I must book on a weekday and have the assistance of an ultrasound!

This is fine. Though, after today's news...I will be very nervous about getting the next cannula in my arm which is likely to be in just over a month because my MRI results show about 10 new lesions, and disease activity including on my cervical spine. I need to change medications (again) which requires a monthly infusion for an hour, then observation for an hour.

Tysabri is my next challenge. My neurologist is confident this medication will stabilise me. However, there is the risk of developing PML (rare brain infection resulting in severe disability and death). I am currently JC Virus Negative and this is a good thing, but I will need to be tested every 6 months as this virus, which most of us have (70%-90%), increases my risk of contracting PML.

What is completely fucked up is that I feel fine, and as you all know, I 'look' fine and I have not had a relapse in over 2 years. But the truth is, as I sit here...my body is attacking itself and it fucking sucks and it's fucking scary and I fucking hate the unpredictability of this stupid thing called MS.

Meeting a new monster.

In late March, I went to see my neurologist after receiving a letter in the mail from him about an isolated case of PML (the horrible, rare brain infection where you become severely disabled and basically die) in an MS patient taking Gilenya - this is the medication I take for slowing my MS progression. Before going along to the appointment, I listed all the 'issues' I had been experiencing over the past few months, some of which I spoke about in my last post from November.

My neurologist read over my list (love lists!) and made the observation that my biggest issue has been anxiety.

The lump in the throat, the dizziness all followed by some physical symptoms of anxiety. It's all true.

One Sunday night in late November, I did not sleep. I was restless in bed. M had to move to the spare room because I was tossing and turning like a sizzling stir fry! I kept feeling weird sensations in my chest and was quietly convincing myself that something was very wrong and I may need medical attention, or else I might die. I thought my heart was getting hot, then I was trying to force myself not to think  about it - this failed and just made me think about it more. I spent the whole night wide awake without any sign of feeling or getting sleepy. Lights when on, then off, back on again etc. I tried reading articles online on ANYTHING that would take away the attention I was giving my body. I was looking through old photos, trying so hard to get my mind into some kind of positive space. It was such a struggle. I cried. I cried hoping I would cry myself to sleep - that failed too.

As the daylight crept in, I went online and made a doctor's appointment (after calling in sick for work). My usual doctor was not on, but I didn't care. I just needed to do something so I booked the earliest appointment I could with a doctor I had seen a few times before.

I waited in the waiting room and felt a little bit as ease, feeling close to a resolution for this insanity that crawled into my head. I thought, if anything happens to me here (medically), there are heaps of doctor's here and they will look after me.

Once I saw the doctor, I explained my night. I was desperate for some respite. I was prescribed antidepressants and valium. She told me to go home, take the valium immediately, sit on the couch and let the valium do its work. So that's exactly what I did. Once it kicked in, finally, I felt a sense of normalcy. It was amazing. And in retrospect, it confirmed that the feelings were indeed...anxiety. Why else would I feel normal after taking a muscle relaxant!? Der! C'mon Sascha! It took a fair while for me to accept this and not immediately assume that something was actually medically wrong with me. It took a lot of convincing and talking and thinking rationally.

Since then, things got better. I started to see an amazing psychologist. She was great. I came to a point where I went off the antidepressants and was ready to finish up with the psychologist and just get on with it.

Unfortunately, not long after, 'it' came back.

I was unimpressed to say the least!

I may have experienced a panic attack in Melbourne where I was there in the school holidays (The Melbourne Comedy Festival was GREAT - interestingly, a lot of comedians spoke about anxiety/depression/mental health). I thought, "Fuck this!"...oh and I massively stacked it with my suitcase walking to the station - it would have looked so awkward, too awkward to be funny.

So I went back to the doctor, went on different medication, and saw the psychologist again (albeit for much fewer sessions this time around).

That was about a month and a half ago, and right now I feel SO SO SO much better. It's great. I feel close to being free from this new monster that entered my life. And I will tell you this, that until you experience that level, or that type of physical anxiety, you really just can't relate. It's just so different from any other anxiety I have ever experienced (exams, medical stuff, interviews, planes - still really hate planes). It has taken me 10 sessions with my psychologist and two different medications over the last 6 to 7 months to get to this point.

I am so incredibly grateful to all the people who have let me moan, bitch, complain, or simply have let me talk about my anxiety. And it has been so comforting knowing that I am not the only one! A few of you out there were able to instantly relate to what I was experiencing, simply from experiencing it yourselves. Thank you, it helped me a lot.

More MS news next time...