New Hospital Update

Alright, I think now is the time to really explain all of this.

I went to hospital because the lymphnodes on my neck were so swollen that my entire neck was in pain and swollen, my throat was swollen and incredibly painful, so I couldn't eat, drink or take my meds. Which is why I was admitted.

I was sent to Aurora hospital, which is the place where they have a ward for infectious diseases. They suspected three things; herpes, cytomegalo and EBV (mononucleosis). All tests came back negative. Although the symptoms were those of mono, that came back negative as well. This can mean two things, either the tests really were negative and I had something else or then because of my immunosuppression there were false negatives.

In any case a couse of antivirals, antibiotics and cortison has now gotten rid of my symptoms and I am in that sense healthy again. They might let me leave this week!

However, I have a new problem: my entire right hand and wrist is extremely swollen and painful. I have similar pains in my left leg and hand as well, but those are still functional. I cannot do anything at all with my right hand. And I'm right-handed.
They took an ultrasound to see if there are signs of trombosis (bloof clots), deep bruises or inflammationn, but saw nothing at all to suggest those. So now I'm on nervepainkillers, because they think it might be nerve related, and maybe I will have an ENMG later on (not in the next two weeks). It would show if there are changes or problems in my nerve pathways.

Writing this has been horrible, because I've had to use just one hand and I keep making mistakes with my left hand, so sorry for any typos I've missed. My right hand/arm is entirely immobile now, because it hurts even when I do nothing with it.

I'm also still in queue for the psychiatric department, and I might need to start my anti-depressants and anti-anxiety pills again.

Medication:
Lyrica 75 mg x2
Diapam 10 mg x3 (if needed)
Panadol 1 g x3
Zovirax
Some antibiotic that I can't remember the name of
My regular meds
Medrol 8 mg extra
And last night I got some benzo to help me sleep through the pain, which helped and now the nurses are trying to get it to me on a regular basis.

Back from a long holiday

So this has taken me forever.
Sorry about that.
Well not really, I am sorry for being MIA but I'm not really sorry for having enjoyed my summer. So in June I was in Canada for two weeks, mostly in Toronto (just a day or so in Montreal, out of a whim really), and I had the most amazing time. Safe to say it was the best holiday I've ever had. However, more about that later on when I finally get my photos posted here too.

The summer's been unbelievably warm. Hot actually, and I think I've melted a few times, it's dreadful. I'm  really not one for warm weather, I can't do anything other than drink bottle after bottle of mineral water and it's driving my dad insane. I think I drink like seven litres a day (and to anyone who thinks it is dangerously too much - I'm still alive so booyah get over it, at least I can drink).
I can't sleep whatsoever, so basically this summer has just made my insomnia much much worse, and I can't really ask for help because my shrink is on holiday. So I have my old pills for it, but seeing as they never helped, well, tough luck I suppose.

Speaking of shrinks.  Since I went on holiday in June, I haven't taken a single anti-depressant, anti-anxiety or anti-anythingpill and I feel fabulous.
I think it's safe to say I'm no longer depressed. I am a tad worried about the start of my new school year, because if I start stressing out again, I might need to start taking pills too, but let's just wait and see, shall we?

And yes, I was accepted to Haaga-Helia to become a multilingual management assistant. So from the end of this month on, I will be studying business and languages. Hopefully by the end of the next four years (that's about as long as the studies will take), I'll be able to speak over ten languages. That's my goal anyway. I'd like to get to twenty before I die.
On the 19th I will have a Swedish test to maybe get exempt from the course, because if I have to take another Swedish course with people who can't even say their own names in Swedish I will kill someone. I use Swedish every single day, seriously need to get a free pass.
Anyway other than that I'll have to start studying Chinese, German and French, and I hope that I can choose Russian at some point.

I've also been writing quite a bit. I had about 65 pages of a book written, and I think now it's more like a hundred pages. I always write by hand on paper, so I actually don't know how many pages it really is since I've yet to copy it on the PC. But we'll see. Hopefully! Maybe one day I'll get the courage to let someone actually read it. Would anyone actually be interested?

Numb

The Evening of Philosophers

i've noticed
noticed well
that now that i take
those happy pills
the pills that
make me do this
instead of something
worth
doing
my happy pills
they make me
do this
philosophise
over the importance of unimportance
and i wish
that my happy pills
lasted forever
for all i have left
without them
is sadness
pain
agony
crying
death
i never want to leave
the side of my happy pills
the evening of my philosophy
the evening of philosophers

Heart Transplants and Heart Tattoos

So I've probably never told you, or more like, I know I've never told you, that I'm a transplant patient.
When I was 11 years old I was diagnosed with severe dialated cardiomyopathy which basically meant that my heart had grown to almost the size of my ribcage and didn't pump blood very well anymore.
I didn't have any pains, just a lot of arhythmia and I felt sick all the time (wanted to throw up constantly).

For the first few months I was in the children's hospital in Helsinki in the ICU (Intensive Care Unit) and then the heart ward and got heart medication from the start. I was put on the transplant list, but I was taken off of it, when I started to show signs of recovery. I was sent home with a large amount of medicine to take and I felt slowly better again. I wasn't allowed to participate in gym or anything of the sort, I wasn't even allowed to go to school with the bus, I had to take a taxi so I wouldn't strain myself and my heart.

However, in March 2002 my condition crashed. I got such a huge amount of arhythmia that day (maybe the 22nd, can't remember) that I mentioned it to my dad and off we went to the hospital. There they told me that my condition had gone down to where we started at 9 months earlier. So I was put on the transplant list again, as an urgent case. I dont' remember how long I waited, but it wasn't days or months, it was only a few hours and off I went into surgery. My parents were sent home and there they said they just walked around the dining room table waiting for the phone call to tell them I'm alright and have a new working heart now.

Of course, it's never quite that simple. They did get that phone call, I was alright, I was happy, in terrible pains and in a huge opiate cloud, but happy to be alive and happy to know that from now on I can live a normal life again.

Again, not quite that simple. Every day I have to take a large amount of medication to keep me alive. Some of them, only a small portion, is for antirejection (rejection is when my white blood cells attack my heart because it's not a perfect cellular match to my own cells and see it as a foreign object). The rest are for a number of other things: blood thinners so I don't get blood clots, blood pressure medicine, because the antirejection meds cause high blood pressure, and colesterol meds because again, the rejection meds can cause high colesterol levels.

Actually, I've been quite fine using these meds for the past 11½ years now, but hospitals and me don't get along anymore. Now I have anti-depressants for both depression and anxiety problems, anti-anxiety meds and as a backup, sedatives, because I've had such awful experiences in hospitals, and after so long of taking blood samples, my veins are non existent. I have had some wonderful times in hospitals as well - kind people treating me and giving me the feeling that they know what they're doing and really want to help me, so as a rule, I'm not complaining, but even the idea of having to go some strange ward in a strange hospital makes me cry. I am crying as I'm writing this.

I have had a small small tiny little rejection twice. Once right after the operation, which was ordinary, since they had to see what doses of meds to give me, and then after six years from the operation, and then they switched Sandimmun to Prograf. That made me very happy, because I hated Sandimmun with all my heart. It smelled dreadful and tasted even worse, and it caused both hair growth (everywhere) and enlarged gums. So I basically had no visible teeth and a nice big moustache. Never had a unibrow, but my eyebrows still go all the way to my hairline on the sides! Also I still do have a moustache. Jees I'm more hairy than most Finnish men! Thank goodness for razors.

Another medicine that gave me a lot of issues and a lot of self-confidence problems was cortison. I was a real example case of the worst possible visible side effects - I grew to a balloon in about a month without eating almost anything because I still felt sick after the operation. It was all water that was being stored in my body. That's the reason I have so many stretch marks all over my body. I was a huge hairy balloon from sixth grade all through to ninth grade when I sort of levelled to normal and then got a short lasting eating disorder. I was never skinny, I never lasted that long, but I did go from L to S in a short time period.

My transplant has given me a lot to think about over the years, and though I am and will always be so grateful that I am alive today, and that someone out there was kind enough to be donour before they died, and saved my life, I have gotten a lot of trouble from this as well. When I caught mono in winter 2009, I never would have thought that that virus (EBV: Epstein Barr Virus) would cause me a cancer. Last spring, in March actually, I was diagnosed with PTLD - post transplatic lymphoproliferative disease - which meant that I had B-cell lymphoma. Cancer in my lymph nodes.

Thankfully, the treatment I got was less harmfull for me than what chemo would've been, so I was lucky in that sense, but it's not yet sure if the cancer is all gone. Right now I am plagued with pain in my jawline which is caused by an enlarged lymph node (over a centimetre large!) and the results from my previous enteroscopy still showed signs of possible lymphoma so now I got a new enteroscopy and will hear about the results hopefully next week.

Maybe now it is sort of clear what has happened in my life and why I am on anti-depressants, which I should have been on for years already. I just refused to believe I was depressed, though I thought about suicide more than once. More than a hundred times I suppose. I knew I could never do it, because of my dad, I couldn't leave him lonely, with a dead wife and a dead daughter, and two very difficult dogs.

I am a survivor. So is my dad. So was my mother as well after her first cancer. We're all survivors and I will do whatever it takes to stay on this planet. In this world. But it's not always easy, it's not always simple, and most of the time, it's really painful. 

Hopefully this clears up somethings that I'm sure some of you at least have wondered about if you have read my introduction, or know me in real life.

Today's thoughts and some military inspired fashion

I was so excited and hyperactive in the morning, that I really went on full overload of happiness, and it didn't really stop now either, since I spent the entire evening knitting, watching TV and checking a huge box full of old photos almost simultaniously, and found some real diamonds in between!
I'm going to put a big photoset on my wall at some point, because there are things that I really want to remember from my life. And old photos of all our dogs and our two cats (who've both passed away). The pictures are way too cute. Maybe I'll show you one or two when I get them scanned!

And at the same time, the entire day, I've basically worn my dad's old army uniform since it's super super warm. It's like forty or fifty years old but still in perfect condition and since he was in the alpine infrantry they had some pretty darn warm clothes and our house is freezing cold. Well not today, but mostly in the winter it is (today we started heating).

So here's some inspiration pictures I ravaged through after I realised that hey, wearing this dress shirt might actually make a pretty darn fashionable dress with a nice belt!