The Magic Potion‏

It wasn't an easy process getting to the point where I am now.

"We've been doing this for two years"

Two long, long years....and still it feels like I wasn't given enough time to really come to terms with what had happened. Especially at the beginning of this journey things were changing so fast I didn't have the slightest chance to float with the current - instead I was just barely holding my head above the water, trying not to drown.

There have been moments where I've been so frustrated that all I could do was sit in front of you with tears streaming down my face and was ready to throw the towel in.

Moments where I felt no one and nothing could stop me - but then realized it wasn't that easy and a positive attitude wouldn't make everything better.

Actually a lot of things we were trying weren't really showing the results we were hoping for. In fact we were reaching the point where we couldn't carry on ignoring that the amount of medication I was needing to keep my lungs semi happy was absolutely ridiculous - and slowly but surely destroying my body.

In my case medicine really doesn't provide this magic pill - but in a way something magical did happen after getting this email from my consultant.

I was able to receive Mepolizumab or how I like calling it, the “magic potion” through a Named Patient Programme - which means I don't have to wait until this particular medication gets approved and available here in Austria.

This only was possible because I had a doctor standing behind me, pushing and really fighting to find a treatment for me. Thank you! 

Unfortunately this medication didn't magically make everything better, neither will it. My lungs still enjoy misbehaving, I sleep with an oxygen tube wrapped around my face and probably need more rest than a baby...

6th admistration of Mepo

But I'm managing to go to University and was able to reduce my steroid dose without my lungs having a complete tantrum.

In other words: Yes I'm still far away of a good age appropriate general health, but I don't feel like I'm stuck in a constant down spiral anymore.

So maybe Mepolizumab has been this "magic pill" after all...

Who knows where I'd be without it right now.

Time-out

I'm feeling better - Not better, as in all better and back to my old normal self, but I'm definitely not feeling as poorly as I did. 

After 2 weeks of not being able to move without going into a coughing fit, wheezing like wheezy from toy story https://www.youtube.com/watch?v=Mh6KGSPB2ZU and constantly tripping over my O2 line, I'm finally able to turn off my concentrator, unplug it and hide it in my wardrobe behind my clothes. (Insert happy dance here)

I've wanted to become a doctor ever since being a little girl. My dolls and sister constantly were wrapped up in bandages and plasters.

We had this book about typical childhood illnesses at home...

A thick book with a white cover and black lettering - Nothing special really. But I remember pulling it out of the shelf and starting flipping through the pages...That was probably the moment my fascination for the human body was born.

Years later the human body still fascinates me, I still want to become a doctor but instead of my sister and dolls it's me, who is now covered in plasters from blood tests and hooked up to plastic tubing when my lungs decide they have worked too much and need some extra help....The hardest part is that it's not a game, there’s no time-out and I can't just get up and walk away when I had enough.

When I yank the plaster off my skin there's still the bruise.

When I don't need my supplemental oxygen that doesn't mean my Asthma is gone and I'm cured.

I'm frustrated and annoyed that not everyone's body works like it should. 

Why can some people stuff their faces with fast food, smoke two packets of cigarettes a day, get drunk every weekend and still seem to be healthy? 

Why are a lot of those who don't take care of their bodies able to work towards achieving their dreams and goals?

Why do people get sick anyway? And why don't all of them get better again, despite following their treatment plans, eating healthy, sleeping enough and making sure they listen to their bodies?

One step forward, two steps back...

I danced around in a banana onsie, celebrated the birthday of a good friend, went for a coffee at Starbucks and just generally had a good time, trying to live a "normal" life the last couple of days.

I was feeling like I was finally getting a bit of energy back - not having to sleep as much throughout the day to cope.

But today these silly little questions came creeping up behind my back again and gave me a proper scare. 

"What if things never get better? What if I never improve to the extent that I'm able to function like I should do?"

I overdid it - woke up with grumpy lungs. Sats down, heart rate up and extremely short of breath.

Brilliant!

This probably is down to the tiny cold I caught while not isolating myself at home...

But will every little bug attack my lungs and nibble away at them? There's not much left to munch on.

Every cold seems to set me back, leaving me in a worse condition than I was before. It's a vicious circle and right now I don't feel like there's an escape! 
I'm not saying there isn't one...but I'm fed up with not being able to find the right key to the locked door.

It's like I'm living in a bubble - and this bubble does keep me safe a lot of the time. But unfortunately it isn't particularly strong and doesn't carry me far. It pops so easily - then when I least expect it to.

Dear Doctors,

We've had a really difficult time and I'm more than aware of the fact that treating me hasn't been and still isn't easy! 

I know you are trying your best - but believe me, so am I...not just trying ever so hard to be a good patient, but also trying to believe you really don't have a magic wand, secretly hiding somewhere. 

Sometimes I wonder if you are satisfied with my current health situation, or if you forget that it's a 19-year-old who is sitting in front of you, not a fragile 90-year-old. 

Right now I'm lying in my bed with three pillows piled up behind me to make my breathing a tiny bit easier. Got my oxygen concentrator turned right up but still can't get my O2 levels above 90%...hence the splitting headache I have at the moment. 

Even reaching over to my cup of tea which is standing right next to me is making me feel like I just ran a marathon. 

So what do I do now? I guess the aswer is: Wait. Wait for things to improve again…

Actually I have so many questions I’d like to ask you – But I don’t, because I’m scared you won’t be able to give me the answer I’d like to hear.

Best wishes, 

Emily