New year, new life?

Hello again! Christmas is over now and so is the New Year :) So HAPPY NEW YEAR to you all. I only wish 2015 will be better then 2014, though it's not looking good at the moment. Today I had another meeting with my stoma nurse and the wound on the side of my stoma has gotten a bit bigger since the last time I saw her. Again she said, I might have a skin disease called Pyoderma Gangrenosum. This is what WIkipedia says about it:

"Pyoderma gangrenosum is a condition that causes tissue to become necrotic, causing deep ulcers that usually occur on the legs. When they occur, they can lead to chronic wounds. Ulcers usually initially look like small bug bites or papules, and they progress to larger ulcers. Though the wounds rarely lead to death, they can cause pain and scarring."

Tomorrow I'm going to see the doctor/surgeon who is going to make a decicion if I should goo to a dermatologist or if I'll just start eating cortisone for it... I've stayed away from cortisone trough out my adult life since it's the worst medication that you can give to a person with BED (binge eating disorder). So I'm really terrified about taking it for just a "small" wound on my stomach but apparently if it is Pyoderma, nothing else will help...  And I need the wound to close since that is the only way for me to get another surgery on my stoma to make it even half way decent.



I so hate my life right now. I was SO SURE that with this stupid ileostomy I wouldn't have to worry about taking medication or running to the toilet all the time... Even thought I would get rid of the pain I've been living for years with. But of course nothing is that easy for me. I still eat all the same meds as before, now I'll need to take medication I swore to my self  I'd never ever take under no circumstances AND I still need to run to the toilet all the time. Yeah, I'm not a very lucky person.

Well at least the weather is great NOT :D We had beautiful snow for Christmas but for New Years eve it was almost all gone...  Right now it's raining. But I'm sure the snow will come soon! And I so wish this wound would heal also, at least with that terrible medication so I could finally get the surgery and maybe have a bit easier time with this stoma.

And for the end, I'll show you the best Christmas present I got this year :D

Christmas is here!

MERRY CHRISTMAS!

Today we celebrate Christmas (Joulu) in Finland. Unfortunately I was unable to go to spend it with my family so I am at home with our dog as my boyfriend is with his family. So I get to celebrate tomorrow with my boyfriend and our dog. But I wish you all happy holidays what ever it is you are celebrating today/tomorrow.

And as I wished, we DID get a white Christmas :D

Christmas Concert

About a week ago I performed at a Christmas rock'n roll concert. I did most of the back up singing and performed two songs with the help of my friend. We performed Winter Wonderland and Walkin in the Air :) The show was great, I was very pleased with myself. The only problme was that I was so tired afterwards that I still haven't regained my energy back... I loved performing but the rehearsals and all the stuff before the actual performance were really hard on me. I think I started this too early after the surgery and all but I'm still happy I did it :)

Here you can also see my new hairstyle and the new color I just had a day before the performance :D And some of my lovely artist colleagues. There were more people performing but it was so hectic so we didn't have much time for photos :D Oh well maybe I'll get to do this all over again next year :)

Christmas is coming

I'm already looking foward to Christmas! I'm a huge Christmas fan. Though in my family Christmas was never celebrated as a religious holiday as it isn't in many Finnish families. We still have most of our pagan traditions included in our Christmas traditions which I think is so cool. Also the  name of Christmas doesn't have anything to do with christianity in my language, it's called joulu here and pronounced pretty much the same way Yule (pagan x-mas) is.  For me Christmas is time of joy, peace, happiness and giving. I do love to get presents (I'm a big child at heart) but the best thing is to give presents especially to those who are most dear to me.


Usually for Christmas we have two parties (me and my boyfriend). In Finland Christmas eve, 24th of December, is the day we celebrate. Tradiotionally we eat rice porridge in the morning but as I go to see my family to my sisters or brothers place, my boyfriend goes to his family home, so we are separated. So my family has rice porridge for lunch before the big Christmas feast. The morning starts usually with children watching TV and mostly hot line for Santa Clause/ Father Christmas. There kids can call and tell Santa what they want as a present and they also show how Santa gets ready to leave to take presents all over the world. I watched this show when I was a child and it still come every Christmas, live from Korvatunturi where Santa Clause lives :)


In the evening the whole family gathers around a big table to eat. Most families have the tradiotional Christmas foods that hey have every year. These foods Finnish people have eaten for hundreds or years during Christmas and other celebrations though nowadays they are only eaten for Christmas. They include: swede casserole, potatoe casserole, carrot casserole, ham, fish in different forms (mostly herring and salmon and yes, we eat raw fish here it's either salted or marinated. But we also enjoy our fish cooked and my favourite part of Christmas food is oven salmon :P), potatoes, sauce for the ham, rosolli (like salad that's made out of preserved vegetable and herring topped with whipped cream made pink with beet root juice), peas and white fish with lye (not my favourite thing and many Finnish families don't have it anymore as it's not very popular). For dessert we have joulutorttu (Chrismat tart) which is a star shaped pastry. We also have a traditional Christmas pudding in our family that has plums, rice, whipped cream and quark (and of course made sweet with sugar). In addition there are all kinds of sweet pastries, gingerbread, pies and cakes that can vary depending on the family.

Besides food we also have a decorated Christmas tree. In Finland the Christmas trees are mostly rather simple compared to the huge glitter bombs that people seem to have in USA :D But this also depends on the family of course. Our Christmas tree has always been in the middle, not too flashy but still has lot of ornaments and stuff on it. When we were kids it was our duty (I have two siblings) to decorate the tree. Now I have my own Christmas tree to decorate.

I also LOVE buying Christmas presents. It's hard as I don't have much money and other people in my family do... So they are acustomed to such different quality stuff then I have. It's hard to find things to get for them. My friends are easier as they are  not as demanding as long as I get something from my  heart (which is easy when you are buying for your best friends).

The pictures are: 1. me and santa last Christmas 2. my niece on Santas lap 3. Didn't find a picture of my familys Christmas table so this is my friends Christmas table 4. My X-mas tree in my little room. We normally have two trees, the real one in the living room and small one in my room :) 5. My favourite tree ornament! 6. This years X-mas gifts for family and friends. Few presents still missing that are for my dog :D

BlAh

Well no good news here... I have been at the stoma nurse now twice within two weeks time and still there is no solution to my problems. There is only one soft convex flange available in my country so that's the only option for me. But the problem is that I've become allergic to it. I have a rash that itches like crazy. Today I got some large cohesive seals that I'm using now and so far it feels pretty comfortable. It's still itchy but not as badly. Also the flange seems to stick better around my navel area so that's always a good thing, I don't feel so vulnerable with it.

Anyways, the wound on the side of the stoma is still hurting a lot and not getting any better. I'm starting to wonder if I'll ever get rid of it. Also the wound on the opening of the stoma isn't getting any better. When I move it feels like someone is ripping the wounds open as the flange presses against them and makes the skin move. So the only comfortable position is on my left side lying on the bed or sofa... Yay. My apartment is starting to look like hoarders apartment as I can't do any cleaning, I'm unable to bend almost at all and the whole thing just feels so uncomfortable all the time. It feels like a big piece of plastic that has been glued to my stomach that's pressing against the wounds and pulling everything down. I know I'll get used to the flange eventually, but now it still feels really bad and it's on my mind 24/7.

I still need to wake up every hour with alarm clock so I can go and empty the bag. It doesn't seem to matter how little I eat, or at what time I eat. But I guess this will be my fate for the rest of my life as it's not like my body hasn't gotten used to having no large bowl as I had J-pouch for years. If I could just get rid of the pain and be able to move around like a normal person. I feel so confined and really like an invalid as I can't even walk properly :(

And one thing I really hate is the smell! Yes it smells, no matter what I do. I change the flange every day and I block the air valve with stickers but still the smell comes out... And I can totally remember my stoma nurse telling me there is never any smelling problems with stomas... Oh really?!?!? I'm guessing she has never really met people with stomas... Though I do have an extra sensitive nose as well as an extra sensitive skin so that might be one of the reasons this is so hard on me. But my boyfriend has also noticed that I do smell in the morning when I come out from under the covers... Not really looking foward to beeing a smelly person for the rest of my life, any ideas? I've used some stoma deodorants but they are really not working at all...

Oh I'm so waiting for the day when I can come here and write something positive about my stoma! But right now I just can't :(

Today is my birthday

Today I'm turning 33 :) I feel so super old! I'm not sure if it's the age or all the stuff Ive gone trough in my life that make me feel like an old hag. I know that sorrow, paind and suffering will make you look older then you really are and I really feel like this, though my friend assure me it's not so :D But I just feel like my life has already gone, all the good days are behind me and now I'm just waiting... For what? I don't even know. I'm waiting for my life to just pass me as it has for the last 5 years. And these were supposed to be the best years of ones life! I'm an adult but still have my whole life ahead of me. But as I'm not really looking foward to the future it surely doesn't feel that way.

But I don't want to only moan about my sorry ass life :D I do try to stay positive it's just that... Well I'm not a very positive person to begin with. I always expect the worst (except in this ileostomy situation as I really did hope for some improvement on my life) so that when something nice happens (rarely) I can really enjoy it. but I'm not so sure if that's the best way to live. I need some happiness coaching or someting :D How to be positive for a day :D

Anyway this is me, with my new short hair turning 33 :D No make-up and no extra special posing, just me the way I am. Not very pretty, rather odd looking gobbling... Or a troll as  my boyfriend affectionately calls me (I'd rather be a fairy XD).So happy Birhday me and lets hope this year will be better the the last one :)

Will I ever be happy again?

Well I'm having some hard days again. I just can't believe that after all that persuasion from my doctors and all that reassurance about how my life with stoma would be so much better, all I'm left with is... Well nothing. I can't say my life is any better due to ileostomy and still I'd rather take back my j-pouch though life with it was truly difficult and painful. But nothing has really changed except that with j-pouch I was able to do sports, go swimming and just be and walk like a normal person (as long as there was a toilet close to me!). Now I am unable to bend to any side, I have only two positions to sleep in, I still need to run to the toilet every hour during night time and I still need to know where the toilets are whenever I go somewhere.  The worst thing is that I'm not able to use my body at all the same way I used to... I can't move, unless I hold on to my stoma. I can't walk too fast unless I hold on to my stoma. I also try not to breathe while I walk so it would be easier which, as we all know, is quite difficult task so I feel like fainting most of the time.

Also I have  noticed that the wounds around my stoma are getting bigger and the big one is also corroding or something, it's becoming more of a hole on the skin and REALLY sore. I just contacted my stoma nurse so lets see what she will say. I'm so afraid this will never end with these wounds, but someone HAS TO figure out someway to help... I do think that it would be a lot easier with the stoma without the wound as it seems to be the one that's hurting all the time even though there hasn't been any leakage on the wound for weeks. The wound on top of the stoma is also pretty painful but not nearly as bad a sthe bigger one. I don't think I'll ever be wound free as the stool comes from under my skin, so that will be a problem for the rest of my life. I'm just worried that things will never get any better until something is done with the stoma itself... But as my stoma nurse said, that would be impossible. That's really not a happy thought as all my doctors were so sure that I'll get rid of all the pain when I get my ileostomy. Oh well... Never trust a doctor :)

Not only bad news all the time. I have noticed that all my cramps are now totally gone! It's funny as it has happened so slowly that I haven't even noticed it until yesterday as I ate a BIG dinner and was a bit scared about the pain. Then I realised that I haven't had any pain (from the cramps) for few days. So now I think I can safely say that the cramps are gone, and I'm SO HAPPY about that. Don't need to be afraid of eating anymore. These small joys sometimes seem to be overshadowed by all the bad stuff, but just wanted to remind myself as well, that things are improving, though slowly, veeeery slowly... :D