Come wake me up

Mingrisen sover som en liten stock - mumsigt godis som är fri från laktos - soja - nötter m.m. - I am so tired and apparenty I look too - My new speakers to my iphone, thank u daddy. I accidently broke my other one. Oopsies. 

Min kropp har lurat mig. 

Bio-Oil

Hello my best friend. I'm using Bio-oil twice a day on all my scars. 

I have a "few" that I really want to go away. Because of PSC/AIH I have scars all over my legs and arms. So ugly. They actually bother me a lot more than my scar from the transplant. I bought my bio-oil from the UK but I know you can get it here as well from the Pharmacy.

www.bio-oil.com "Bio-Oil is a specific skincare oil formulated to help make scars, stretch marks and uneven skin less prominent. Also recommended for aging and dehydrated skin. Bio-Oil has received 85 awards and is the best selling product of scars and stretch marks in 11 countries since its global launch in 2002". 

It only made me stronger

Jag saknar känslan att vara "ung och normal", odödlig, inte vara rädd för att dö alldeles för tidigt och att min nya lever ska svika mig. Att inte behöva tänka på saker som andra inte behöver oroa sig över. T.ex. slippa oroa mig! 

Jag saknar mitt gamla jag även om jag vet att jag nu har chansen att bli och vara så mycket bättre. Från och med nu. Även om det inte längre bara är upp till mig.

It can only get better from here ...  because you know what? 

It didn't kill me. IT ONLY MADE ME STRONGER. 

Rumour has it

NEW fynd från Din Sko.

You suck the life right out of my heart

Trött tjej? Var till gymmet imorse, efter att jag dumpat mamma på stationen. Självklart glömde jag medicinerna som jag måste ta 08:00 så jag behövde kila hem innan jag kilivippsade vidare till gymmet. Något frustrerande! Väl på gymmet så var det ovanligt mycket folk, bla. nybörjare, irriterande! Kände mig inte nöjd / trött när jag var tvungen att åka därifrån kl 09:15 för att skjutsa bror och hämta LillPix 09:30. Idag ska jag försöka ta mig i kragen och baka bröd. Äter inte köpt bröd, förutom knäckebröd. Mår illa och får ont i stackars magen. Men, hembakat går bra. Sen ska jag traska ut i kylan med minigrisen, som inte tycker om att vara ute i denna kyla, skjutsa far ner på stan och sen hämta båda föräldrarna. Så ja, chaffis idag haha. 

Tror jag måste klämma in en liten nap först. Knoppen är helt slut! Kanske inte återhämtat mig helt ännu från vad jag nu hade för "bug" tidigare i veckan? 

TIPS ! för ni där hemma som inte kommer iväg till gymmet eller kanske inte hinner en dag eller så. www.styrkeprogrammet.se. Själv använder jag det dagligen! Har två hantlar hemma som jag köpte i England, som jag kan ha 8kg / var på. Perfekt. Finns en bunt andra övningar också och tips på övningar man kan göra på gymmet också! Love Johanna

Thanks for keeping me alive

Dags att dela medicer ikväll. Mor ska hoppa in på apoteket och hämta ut bla. mer prograf & cellcept. Det går åt om man säger så! Men hoppas att jag snart ska börja minska dosen Cellcept. :) 

Hiding the words that don't come out

You see the smile that's on my mouth
It's hiding the words that don't come out
And all of my friends who think that I'm blessed
They don't know my head is a mess
No, they don't know who I really am
And they don't know what I've been through like you do

And I was made for you

And if my heart should somehow stop

I am so tired of being tired. This last week has been hazy and I've felt really slow. Wouldn't mind some of that energy back please. The shaking has been better this week though, until today. At the gym today I was shaking really bad so I had to stop. When I got home I fell asleep and now my mind is wide awake even though my body wants to sleep. 

Went shopping with my mum earlier today and then I stopped by the bezties apartment as I am looking after it, watering her plants etc. when she is in Aussie. Lucky thing! Which is my ultimate dream vacation!! I am just hoping that her plants will stay alive until she gets home, fingers crossed. Time to try and sleep, tests tomorrow morning and I am hoping that my blood pressure is better. Love Johanna

Midnight girl

Last night I fell asleep on the couch after a really yummi dinner at my parents house (made by the best). 2hours and I woke up at 8pm by my med alarm. Was supposed to go to my friend Jennys place at 19:30 but I didn't feel good at all. Anyways, after a late snack (fruit & quark) I got some energy back and got myself ready to head out. I am glad I did. Met some really nice people, and I've really missed Jenny! Went to bed at around 01:00 and got up at 08:00 this morning as usual, to take my meds and have some breakfast. Giving my parents a lift down to the train station in a little bit. I just hope the car is going to start in -26C . Vixi is jumping on 2-3 paws, poor thing,  cause of the cold so not going to be any long walks today. Today is probably going to be pretty boring. Cleaning, watching some tellie for once and might head over to the gym. Not sure yet. I am really sore after yesterdays work-out, haha. Shoulders and neck are toast! 

Oh well. Need to get myself ready now. To head out in the cooooold. Burr. Love Johanna

Keep your head up

Yesterday and today I have had a really bad headache. Like really darn painful. Painkillers (aspirin) not helping one bit. It was fine this morning, but by lunch time my head felt like it was going to explode again. I've had these headaches now and then since the transplant. 

This could be because of my high blood pressure, which is probably caused by the steroids (kortisonet) . I've always had really low blood pressure like my grandma and mother. But, since a few weeks after the transplant it's been pretty high. It went down to normal for a bit but then a few weeks ago it's been high again. I've agreed with the doctor though to wait a few weeks to see if it goes down with the steroids. I will ask the nurse to check it on Monday though just so it hasn't gone up anymore. 

(Biverkningar uppträder främst vid långtidsbehandling men beror också på dosstorlek och individuell känslighet. Man ska alltid kontakta läkare om man får besvärande reaktioner. Vanliga biverkningar är vätskeansamling, högt blodtryck, påverkan på binjurebarkens hormonutsöndring, hudförtunning, försämrad sårläkning, rubbning i saltbalansen i form av för hög natriumhalt eller för låg kaliumhalt, för hög sockerhalt i blod och urin, benskörhet och muskelförtvining. Kortisonets förmåga att hämma kroppsvävnadernas reaktioner mot inflammationer och infektioner kan medföra att infektioner blossar upp på nytt och att lokala begränsade infektioner sprids. Sällsynta biverkningar är godartad tryckökning i skallen, benröta och senbristning. Källa: www.1177.se). 

On a more positive note the shaking has been better today. Sure, still shaky but it hasn't been as bad. I had a really good work-out this morning. Probably the best in a while! I can finally see some change in my body as well. I have been feeling really swollen and well "big" cause of the steroids so I am very excited to see what will happen now that it's down to half. My whole body is getting a lot stronger, even getting some strong abs. Nice to see I am not doing all this hard work for nothing. 

From instagram : "All the hard work is finally paying off. I knew that the surgery would change my tummy and body, & since I haven't done any ab work-outs for 10months I have a long way back but I am getting there My goal is for the scar not to show".  Love Johanna

Sleeping like a baby

Trött, jag är sååå trött!  Kan tänka mig att det är för att jag inte har någon kvällsdos av kortison kvar. 10mg om dagen nu. Jippi! Men, kommer nog ta ett litet tag för kroppen att anpassa sig. Har varit som ett duracellbatteri de senaste 3månaderna. Så jag skriver mer imorgon, orkar inte nu. Love Johanna ♥

You only need the light

you only need the light when it's burning low

only miss the sun when it starts to snow

only know you love her when you let her go

only know you've been high when you're feeling low

only hate the road when you're missing home

only know you love her when you let her go

and you let her go ...

Everything I want to do

Good morning! Had a realy fun night last night with Anna & Kristoffer. Started off the night at Kristoffers, met his cute but hairy new cat. Then we drove into town. First time at Å in like forever, over a year. It was great to be out again, around people. So tired today though and my head hurts a bit. Today is dads birthday so we are all going to see Gangster Squad tonight. Can't wait!! Looks like suuch a good movie. I am just hoping that I won't get disappointed. Going back to bed for an hour or two. I am sooo tired. Love Johanna 

Had a really yummi dinner at the parents house. Chicken, bacon, asparagus, peppars & ruccola with fresh spinach pasta. So tasty!

Before heading out. 

Cold walk home from Anna at 01:30. Strange, didn't see or meet a single soul. Weird huh. 

Kortison & benskörhet

En läkare ringde mig igår från Karolinska, bentäthetsmätningen visade på ganska så allvarlig benskörhet så de vill minska kortisonet så fort som möjligt. Så på måndag är jag nere till halva dosen. Dvs. 10mg. Detta kom inte som en chock då jag fått ganska mycket kortison 2012. Käkar calcichew 2tabl om dagen, ska självklart fortsätta med det. 

Kortison

Om du behandlas med kortison i tablettform (t.ex. prednisolon) i en dos på mer än 5 mg/dag i mer än 3 månader fördubblas din risk att utveckla benskörhet. Därför är det en bra idé att göra en bentäthetsmätning. Bentäthetsmätningen bör utföras så snabbt som möjligt, då biverkningarna i benen inträder fort när behandlingen börjar. Det är dessutom viktigt att leva en benhälsosam livsstil.

Hur påverkar kortison skelettet?

Behandling med kortison i höga doser ökar risken för benskörhet.

Kortison minskar speciellt de benbildande cellernas (osteoblasterna) funktion, ökar nedbrytningen av benvävnad och nedsätter samtidigt upptagningen av kalcium och D-vitamin från tarmen. Mängden av könshormon som annars är med till att beskydda benen nedsätts också. Alla dessa effekter medför att benmassan minskar.

2-4 av 10 patienter som i en längre period behandlas med prednisolon får ett benbrott som följd av den benförlust som behandlingen medfört. Källa: http://osteoporosdoktor.se

The worst is far behind us now

if we can make it through the storm
become who where we before
promise me we will never look back
the worst is far behind us now
we make it out of here somehow
meet me in the aftermath



there is so much more to life than all of the hours
moments that just slipped beneath our feet
in a times that we put in all our table
and help is too far beyond our reach.

It's a New Year!

Happy New Year Everyone! ♥ 

I had a pretty good New Years Eve, but I was exausted and I seriously need to get my shit together. Eat, sleep and try to relax. No more stress! Maybe that needs to be one of my New Year resolutions? 

So last night. New Years Eve. Because I am obviously not drinking, I guess I get a bit annoyed with people that everyone else does, that just get too drunk. I also don't see the point in drinking A LOT when it's not that kind of occasion, when it was more like a dinner party. I simply just don't find "we need to drink, drink, do shots shots shots " etc. amusing. Maybe I am just getting old? Oh well. Fun people and a over all fun night. Went to bed at around 3am. Dropped off some food form last night at Annas this morning then I went to pick up my little brother from his friends place. 

The gym opens at 12am today, so I am going to get ready and go work-out. Looking forward to it like always. I need a seriously good work-out. Had the day off yesterday. I am not stupid, so after only 3hours of sleep yest. I knew it wasn't a good idea to head to the gym. As I am not like everyone else, I know that my body probably can't handle it and there is just no point in working out if I can't do it a 100%, it frustrastes the hell out of me when I feel "weak". 

Got to go. Love Johanna ♥

(didn't take any photos during the night, oopsies).