myhistiostory

It started off with an appointment with my doctor for a check up. He seems to be a bit concerned about my blood work and wants to look at my CT immediately. So I'm guessing he'll get back to me very soon for an update.

Then I had annother doctor appointment to get a CT done. Check :)

Then I had strolled around for a while and got some stuff on the sale. I haven't been shopping in a while and seeing as so much was on sale (half of half price ;) I thought I'd make a couple of purchases. Bought some sweaters that I'd been eyeing for a wile ;)

Then I met up with the Ung Cancer (Young Cancer) Stockholm crew for coffee. It's so nice hanging out with them because they understand everything I'm going through, and I understand them. I don't have to explain why I feel the way I do sometimes, or what I've been through, and neither do they. We just get it!! Of course we talk about stuff, but there's no justification needed nor is there any raised eye brows or concerns that someone might not be able to "take" it. I just feel...at home.

Got back, had a small plate for dinner and now in bed watching the Simpsons :)

Will blog more tomorrow!! Night night xxx

It's easy in times of crisis and confusement to feel like you're out of your element and helpless. In fact, it's extremely frustrating. You don't have a lot of energy, you feel dazed at times, and sometimes you feel like your days just pass you by and nothing good has come out of it.

That's why I've decided to make sure that everyday I do three things that are good, and I will praise these three things. It could be anything from making sure I got up when I intended to, falling asleep a bit earlier than usual, to reading even one page out of a book. Anything basically that will remind me that I did do something positive, productive, and proactively. Yepp, these are my three P's that I really want to live by to the best of my ability. I think by keeping it to a mere three points makes it easier to accomplish and easier to abide by. Also, I think it's healthy for my mental well being, too :)

So here are my three P's for the day!

1. I got up earlier than I have in the past couple of weeks. (Trying to wean off of cortisone is just as difficult as getting use to it. Your body is using ALL of it's energy to turn on it's natural adrenaline glands again.)

2. I went swimming despite being tired. I even managed to do 20 laps ;)

3. I went in the relax section and just had some Hebbah-time. I just shut off my thoughts and enjoyed the jaccuzzi.

Although I must say, I think everyone should do this regardless of how your life looks like. It's a great way to stay positive and remind yourself that you're great!! ;)

Sometimes I wonder, looking back on it all. What did I miss? We go on all our lives planning for everything, planning for school, planning for what degree to take, planning the next coming months, planning children, relationships, careers, planning planning planning ALL THE TIME!! Thinking about it it's similar to writing a scientific report, except this time we're writing about our lives. We start with the "introduction" where we illustrate what we have accomplished so far in our lives, where we're coming from and how we got there. Then we write the "methods and design" section where we list up all the ways we're going to accomplish our future plans, what measures we're going to take to get there, what tools we're using in the process, who we want with us along the way and so on. Then of course the "results" section: what have we have accomplished, what goals we're aiming at and what barriers we've broken and are breaking. Finally the "discussion" where we sit and analyse our accomplishments, look at all our achievements, what we did wrong and what went well. To encourage development we add a section about "future research" where we discuss what we could do better next time and how we should approach things in the future. The reference section is a bitch to write because that's were we have to review who's been with us along the way, who made it to this list and who was cut off from this list. Some will still remain in the next report and others will disappear.

This is our lives for the most part, for some people. Some follow this system rigidly and others follow it more liberally. But for the most part, this could be a general description of how people live.

So what went wrong in my report? I knew where I came from, I knew what I wanted, I knew where I was headed, and I knew which mistakes I had to fix so far in my life. Suddenly, I felt like I had done a major mistake in my analysis. Something went wrong. Maybe it was the program I used, maybe I miscalculated. Either way, something went terribly wrong. I almost feel like going back and frantically looking through all my research because I'm almost certain I missed one detail that would have warned me, that would have given me the answers I needed to know what I know today. All I keep thinking is, what did I miss?

I know, of course I couldn't have predicted all of this. Even if I go through the research a billion and one times over, the answer still won't be there. We can't predict the future as much as we'd like to think that we can. Maybe I'm trying too hard to find an answer when there isn't an answer, it is what it is. Things happen for a reason and I confidently believe in that. I have figured out a lot of things during this time, but sometimes I just feel like I missed something along the way, like I missed a step or a sign or something. Maybe I shouldn't think about it too much because it is driving me crazy...but I can't help but wonder.

/H

I woke up this morning and I was a mess. I could barely get out of bed. I couldn't move my body and I could barely talk, not that anyone was there to talk to, but the pain in my body was just too much. It really bummed me out because I was suppose to have a friend come over today for lunch and fika but I just couldn't move, what kind of company would I be then?

As the day went by, I tried to gather some energy. It had been a couple of days since I'd been swimming and I thought that maybe that could help me gain some energy. Said and done, I went swimming. I did some exercizes then I went and sat in the jaccuzzi to relax my body a bit, release some tension. It felt great.

Now I'm going to sit and write my offical letter to Försäkringskassan with the intent to sue them. Yepp, that's right, I'm going to sue them. Actually, it was recommended by one of the lawyers at Försäkringskassan ironically enough. I told her about my case and she recommended me to sue them if I felt they made a mistake in my case. So, wish me luck, it's going to be a loooooooong letter haha.

Will try to make a video post soon xxxx

Man oh man have I had the hardest time falling asleep lately. I was up until 5.30 last night. Just couldn't sleep. I guess I have a lot of thoughts circulating in addition to being too alert. I kind of feel weird these days, like I'm in shock somehow. I go around thinking about my situation more than usual, maybe I haven't been busy enough, or maybe it's hitting me again. I don't think these things just hit you once and that's it. I think that you have to come to terms with it over and over again until you are over it...if that's even possible. 

Sometimes it feels unreal, sometimes it feels too real, and sometimes it just feels. It's a complex feeling, too many feelings at once, or none at all. 

Maybe it's the thought that I have chemo for an undefinite time that has worried me a bit. I basically don't have an end date yet. What does that even mean? I don't have an end-date?! It makes it hard to plan for the future. But maybe that's a good thing, living in the now, coming to terms with my thoughts now rather than later. Maybe a learning process of thinking in terms of what is "happening" instead of what "will happen." 

OK..now I'm starting to get why I haven't fallen asleep lately. Waaaaay too many thoughts haha.

..I had to stay. When most people chose to close their ears, I had to yell to make my voice heard. When most people sighed in relief, I gasped for air and tried not to suffocate. When most people finished crying, I was still wiping my tears. When most people fell asleep at night, I had to keep my eyes open to make sure I was still breathing. When most people turned the other way, I had to face everything alone.

I keep being told that I'm not alone. Sure, in many ways I'm not alone. But as anyone who's batteling a disease, they'll know what I'm talking about. I am alone in this. No one can win this for me. No one can do chemo for me. No one can take my cortisone meds for me. No one can fall asleep for me. No one can feel my pain for me. No one can or will cry for me. No one will know the feeling of living with this, but me.

Everyday I do everything I can to keep strong. I laugh, I smile, I talk on the phone with friends to ensure them of my wellbeing. When I lose chunks of my hair I laugh it off. When I'm sitting in the chemo room I smile to the nurses, I smile to the other patients. I smile that smile that says, I'm OK, I can do this, and so can you. We'll do this, no matter how hard it gets. A smile can say a lot you know, it can do a lot.

Maybe I make it look easy. Maybe I make the impossible possible. It's the attitude I have, and will always have. But I don't think anyone really knows the whole story, and I don't know if they ever will really. So often, I think people (I say people to not point out who I'm talking about, it could be friends or family), think I do this and it's easy. I think often, people think what I'm going through, is not "that" bad. Sure, in comparison to a million other cases, it's not that bad. But you know what, I am that one in a million. I am that statistic. LCH is a one in a million chance hit.

I do everything I can, everyday to have a "normal" life. You see, the battle I face is not just my disease, it's everything around it too. It's dealing with family, with friends. It's batteling the concept of being sick. It's coming to terms with so many fears. It's being alone day in and day out with no company but myself. It's having to deal with absolutely everything on my OWN. I do chemo on my own. I deal with the doctors on my own. I deal with insurances, problems, doctor appointments, tears, cheering myself up, making my food, fears, all on my own. 

Of course, there are times when I tell friends what's going on. But how much can they really help? This is not to say that those who have stayed haven't been amazing. But I can say right now that no, I haven't had my family's support. Not the kind of support I need. To this day, no one has comforted me when I cry myself to sleep at night. To this day, no one has ever held my hand when I've sat there doing chemo. To this day, no one, and I mean NO ONE knows the entire story. No one knows how bad it REALLY is. Blame it on me, whatever. I don't tell the whole story and that's because I recognize emotional cues. People don't seem to have the energy. They don't seem to want to see me in too much pain (whether it be emotionally or physically.) I can tell when someone has shut off when I'm talking about what I'm going through. I can tell when someone is feeling uncomfortable. I can tell when someone is listening but not hearing what I'm saying. I can sense people's fears towards me. I can tell by people's actions what they're trying to say. In very few cases have I been wrong. Usually I'm right about these things. I don't know why I can sense all of this. I guess it's a talent. Maybe it's to do with my personality. Either way, it's made it all the more difficult for me to let go and just talk to someone, with no inhibitions.

When I talk about how people have chosen not to support me or chosen to distance themselves from me, I always get the question, who are you talking about? I always chose not to point out names out of respect to them, and I still won't point out names. But to me, it's obvious who's walked out, and who stayed with me. Some walked out dramatically, some walked out silently. My support network just got smaller and smaller with every month that passed. 

But I have to ask, what is everyone so bothered about? I get how everyone is scared, I do get that. But to walk away? From WHAT? You're not the one going through this. You're not the one who has to suffer. You're not the one who has to go through the experience. You're not the one facing all these fears. I am. Everyday, I'm the one facing EVERYTHING!!!

What I'm trying to say is that, if anyone thinks it's been hard facing me, facing my reality, dealing with all the shit around what I've been going through...imagine...just imagine for one minute, sixty seconds...what I have been going through. Walk one minute, not an hour, not a day..ONE MINUTE in my shoes and come back and tell me it's too hard for YOU to deal with. Look me in the eyes and tell me YOU think it's too hard, or too much, or too negative or too what not. Whether you be family or friend, I can bet my life on the fact that you don't know.

To everyone who has stayed so far...thank you! You have meant the world to me and given me a reason to keep standing.

It's interesting. Diseases are interesting. Whether it be LCH, cancer, autoimmune diseases, malaria, AIDS, or whatever else there is out there (and there is plenty to go around.) We think we're invincible. We think that if we take all the right measures, we'll be fine. We think if we have money, we'll buy our health. We think if we hang out with the right people, we'll be "safe." We think if we get the right education, we'll get away from it. We think that if we choose the right partner, we'll be genetically immune. We think that if we pray to the "right" God, that we'll be saved. We think that if we wear the right clothes, we'll be able to hide from it. 

The truth is, regardless of your nationality, your social network, your income, your career, the clothes you wear, the education you strived so hard to get, the partner you think is genetically "perfect," or the measures you take to avoid, we're ALL possible targets at the end of the day. Of course, some more than others, but that is a statistic worth discussing. We strive to define ourselves, we work hard to be someone, we think that all the food that the right food will protect us (it can to a certain extent), but at the end of the day, disease can hit anyone, at anytime, and it cannot always be predicted no matter how much we try.

Disease, at the end of the day, doesn't know color, doesn't fancy clothes, doesn't care about your personality, isn't attracted to your looks, doesn't care how intelligent you are, isn't impressed by the money you make, doesn't want a big beautiful house, doesn't focus on which God you pray to, and disease certainly doesn't care where you come from.

Disease comes to ALL. So what are we fighting for in this world? In our everyday lives, we focus on a million other things. We focus on perhaps all the wrong things (not everyone, but a portion of people at least.) We go on deluding ourselves that everything we can buy, everything we can achieve, everything we can show for will protect us from disease. But it can't. It won't. So again, what are we fighting for in this world? What have our lives become? Without health, what is this all worth?

Just some thoughts.

/H x

Sorry for the poor update, not been feeling too well the last couple of days. I don't really know how to describe the feeling I get when I'm lethargic. It's not just lethargia I experience, but pain as well. I feel pain all over my body, to the extent it hurts to shower. I find it hard to wake up and hard not to fall asleep. Such a backward situation haha. 

So, my nieces and my sister went back to Egypt today. I was really sad about that. No longer will I have Jana come into my room in the morning saying she wants to watch Happy Feet or Shrek and cuddle. No longer will I have her come barging into my room every five minutes. It's sad. I'm sad. I miss her and Diana terribly. Wish I could be closer to them all the time, but what can you do...life isn't always fair.

Anyway...I need to get a haircut I've realized. My hair is a mess...in all aspects of the word ;) Will probably go tomorrow and get this shit done haha.

Will write soon xxx

So, I was browsing through my mail and found a list that I wrote to a friend of mine about all the things I wanted to do before I was 30. It made me laugh a bit but it also made me more determined to do it considering the situation I'm in.


I think I can definitly achieve most of these goals, in fact, I'm confident that I will. Perhaps the travelling part I'll have to wait with a little considering I'm not the richest person (financially) right now, but hey..never say never right? I know a couple are missing but I purposefully removed them because some things I genuinely want to keep private. 

I should add that I want to conquer my disease before the age of 30. Totally doable of course ;)

Right...NIGHT NIGHT!!!