myhistiostory

So I haven't updated in for a while. I've been knocked out. Completely. And on top of that I'm losing more and more sensation in my hands. It's such a weird feeling, it's surreal. So here I am, about a week from today I will turn 28.. I'm not going to pretend like I don't think about it. Not many people can say that they've gone through a life altering experience before their 28th birthday. But then I think about it, and I think that's a ridiculous thought. SO MANY PEOPLE have gone through life altering experiences before their 28th birthday. In fact, a LOT of people don't even get to turn 28. Maybe I'm just comparing myself to people in my proximity.

Most people I know, are either married, getting married, have children, getting children, buying apartments/houses, already have bought an apartment/house. Others are travelling the world. Some are falling inlove. Some have been divorced and have even had time to remary. A lot are developing within their careers. But then...

Then there are other people. There's so much we think we know about people's lives, but we have no idea. Some have lost loved one's way too early. Other's have had miscarraiges or simply cannot have children. Some might feel like their lives are crumbling around them for various reasons. Some people still don't know what they want to do with their lives (not that one has to.) Some people don't even get to live to their 28th birthdays. Some people have lived some really crappy lives and turning 28 doesn't make it any brighter. Many people around the world, know nothing else but suffering, misery, and unhappiness.

My point is that it's so easy to forget, even in my own context, that yes it's shit, yes it's not the ideal way to celebrate my 28th birthday, yes, I will always remember that I celebrated my 28th birthday batteling my disease, yes, it is upsetting...but you know what? It is what it is. I'm here now and there's not much else I can do about it. You know why? Because, on my 29th birthday, this will be a memory. On my 35th birthday, this will be a memory. On my 60th birthday...this will be a memory. 

My point is that it's so easy to sit and self-wollow when we're going through things. And sometimes, it's needed. But I think it's also important to remind oneself about all the good and fortunate things one has been given in life. I don't want to look back at this time and remember a dark and horrible time. I know I've gone through a lot..A LOT A LOT...probably more than most people I know...or less...what the fuck DO I KNOW???!!! But what I DO know is that I have the strength, the capacity, the energy, the passion, and the will in me to make sure this ISN'T my LIFE!!! This is just a PART of a my life, a PART of the journey, a PART of my experience, a PART of who I am and will become. I want to look back on this time and realize how much I gained from this experience, how much I grew and developed, how much I matured, how it changed me...in a positive light. Going through this experience, regardless of what age I could have been or would have been...is a life experience. PERIOD! 

This is my life now. 28 or not. I'm proud and happy. And frankly, I refuse to define my life according to where everyone else is in theirs...or at least I'm trying NOT to haha. 

Right, I can't breathe through my nose so perhaps I should do something about that before I suffocate myself.

/H

Recently I've been feeling one of the more uncomfortable side effects. I get a weird tingling sensation, numbing feeling in the tips of my fingers...I can't feel the tip of my fingers sometimes...it's not the nicest feeling. It's called Neuropathy. This side effects need to be monitored closely by my doctor or else it could result in permanent damage. So, being the hero that he is, slightest request and he accomodates to my needs. This was his solution:

I feel so weak. Physically weak. My mind is running but my body is sleeping. What a pickle.

/H

For clarification: I don't like using the approaches that I mentioned below. In fact, these approaches are usually the LAST resorts I turn to when I've tried EVERYTHING else. This is not who I am, nor is it how I like to deal with things. I don't just go crazy on someone, I do it with intelligence. I only do it when I'm 110% sure that I'm in the RIGHT. I also do it strategically because I always have to be one step ahead of them. Remember that I've been dealing with the authorities/hospitals for the past 10 months, it hasn't been easy and my experience with ALL of them have been nothing but bad unfortunately. Very few have actually helped me, and others have helped only when I've taken such drastic measures. But like I said, when I "flip out," I do it with intelligence, evidence, and knowledge, not from a dramatic character. I think it's important to emphasize this in case anyone reading this assumes that I just do so out of uncontrollable outbursts or from a dramatic point of view. No, not at all! I know my rights, I have studied the system, I have done my reading, and if I'm in the right, I do what I have to do to prove it, even if it means going beyond my comfort zone and nature. One thing that I can't stand, is getting screwed over.

So, over the past year I've had a LOT of experience with authorities. I've come to learn a LOT.

A) No one knows anything about anything.

B) Their favorite excuses are "I don't know," "That's not my job," "I can't help you," "You must have misunderstood," and "YOU have to do it!"

C) Often you will find that they DO know, it IS their job, they CAN help you, I HAVEN'T misunderstood, and technically, THEY should be doing it, NOT ME!!!

So the question is, how do you deal with this? 

Let me begin by saying that I have tried everything from heaven to earth, being nice, sweet, polite, accomodating, understanding, inquisitive, scepticism, and even dumbing myself down to observe their reactions. I have come to the conclusion from a lot of trial and errors, that none of these techniques work. There are however, a few very useful and powerful technique that DO work, namely, THREATENING them, patronizing them, disrespecting them, and demanding my right.

Threatening them: This is by far the most effective technique. You basically tell them that if they do not do their job, or get me the right information, or deal with my case immedietely, that I will report them to their boss, go to the media, put their job on the line, or anything that will basically put fire up their ASS. This is a brutal method, one that enrages me. Why do I have to threaten? Well, when ALL ELSE FAILS, when you lose your patience, and when you are ready to expload, trust me, this is the way to go about it!!! 

Patronizing them: this makes them feel insecure. They then feel the inevitble need to prove that they CAN do their job. So, they actually put their coffee mug down and start working. Yes, it's horrible as this is actually one of my pet peeves. But apparently, when patronizing their reaction is to defend themselves. They know that a mistake has been made, so they do all they can to prove otherwise, hence the job gets done. It's like a chain reaction. Chemistry!

Disrespecting them: they leave me no choice unfortunately. This is often a provoced reaction. They tell me I have misunderstood, they tell me that I have to do all the work, they tell me that they can't do anything. This boils my blood. I lose my patience, understanding, compassion, and sympathy...and flip out. Are they not disrespecting ME by not dealing with my case? Are they not disrespecting the fundings that their organization gets to deal with this by not doing their jobs? Are they not disrespecting people who really DO need help? Their passitivity and lack of competence is an indirect disrespect towards the people. Unfortunately, they deserve nothing less. Trust me, respecting them DOES NOT WORK...it just gives them more fuel to fail at their jobs.

Demanding my right: Often you will find that they think the person on the other side of the phone has no clue about anything. Until the wrong person comes along (AKA ME) and DOES know what I'm talking about. I know how to argue, I know my rights, and I know what I'm entitled to. When they start messing about and entice confusion, I stand my ground and start rambling up legal documents stating what my rights are. They then have no means to argue with me because, guess what...THEY CAN'T ARGUE AGAINST THEIR OWN REGULATIONS!!! 

And guess what? Everytime I've used these techniques, everything has resolved itself within a matter of hours, sometimes minutes. Why? Because, the brutal truth is that this is the only way to deal with them. They are so use to the passive citizen, when a non-passive one comes along with shit in her brains and does know what she's talking about, they shit themselves and react. 

I had to demand to talk to one of the heads of Försäkringskassan today on the phone. Let me just say that it was a very nasty and ugly phone call. I was shaking of frustration and anger. At first she resisted but when I then used the "threatening" technique saying that I would call the media in ONE minute and reveal her name...she backed down and told me she would fix EVERYTHING!!! Who would have thought that exactly 30minutes later, the lady from försäkringskassan in Örebro called me and told me that she too would fix all my documents for my Örebro case. They would send all the papers to the right places (they gave me a LOT OF WRONG INFORMATION...A LOT!!!) They would call my job and deal with it. They would fix all my papers, and they would do so by the end of this week. I took all their names, phone numbers and told them that if I didn't have everything sorted by Friday, that what they would definitly hear their names in the news on MONDAY MORNING!!!! It worked. Problem solved. 

It's horrible really that I have to take such drastic measures for people to do their jobs. It's horrible because it makes me realize that there are so many people who do not dare do what I do, who do not dare fight with authorities, who do not want to start a war with them, because they're scared...but it's not necessarily fear that's the problem...it's that people don't know their RIGHTS!!! These processes shouldn't take that long, they shouldn't drag out forever, you should get the right information, you should get all the help you can. When you're on sick leave, or for any other reason need to be in touch with these people, the information should be THERE...you shouldn't have to spend your entire days making phone calls, or searching a bunch of information. I don't like to use these drastic measures, but they seem to be the only techniques that work. At least for ME!

Over and fucking OUT!!!!

So, I've had quite the busy morning. And seeing as my patience runs low when sitting and waiting on the phone for authorities to get off their coffee break, I try to do other things while I'm waiting. For instance, I tend to send e-mails in the meantime, or read the news to update myself about what's going on in the world :)

I even had time to make a nifty little dish, take a shower in the meantime (second one for the day, the dog jumped on me with his dirty paws) and, dress up. All this within the space of 60 minutes. Nothing better than multitasking ;) 

So here's what I cooked, it took 20minutes to make, and 30 minutes in the oven. It's a very simple dish. I'm not suppose to consume too many carbs, preferable as little as possible (medical reasons) so here's a nice dish that's healthy, flexible for vegetarians, and delicious. The dish is off the top of my head. I didn't follow any cook book or recipies.

I had my little P over last night. Very cosy indeed. We made some healthy snacks, a liter of tea and chit chatted the night away. Well needed.

We opened up the discussion about my situation. As time has gone, less and less people have kept in touch. Very few have actually made the effort to call me frequently and check up on me. In fact, we can soundly round that number up to 3 individuals, S, P, and A. Although, I've been texting frequently with 2 people, namely those abroad, G and N. 

I understand, people have their own lives. They have their own busy schedules and of course I'm not the center of attention of people's lives, nor do I necessarily want to be. But, I've from our discussion yesterday, I realized that it IS easier for people to care from a distance. Why? Because that way, you don't have to get too involved, but still involved enough to not feel guilty. Now I'm not asking for people to check up on me every minute of everyday, that would just be annoying. I'm not going to lie, there are a few mails that I still haven't had time or energy to catch up on. But it did lead me to a few questions and speculations.

1. I think that when people in ones surrounding are faced with real-life situations, especially one that concerns sickness, it might cause a sense of discomfort and unease in them. It reminds them too much of their own fears and mortality.

2. Some people honestly have no clue how to handle this. Many people internally panic. They don't always realize how it comes across to others.

3. I've realized that when it comes to crisis situations, I don't deal with it the way many I know do. I tend to go on autopilot and all my energy goes into fixing it and dealing with it. It's almost like a survival instinct I have in me. 

4. I've also realized that I actually have a hard time empathizing with people that don't know how to deal with real life situations. I guess I can't empathize because I genuinely do not understand. I can sympathize, but I just can't emphathize. We live in a world where shit happens all the time. We read the news, we know illness exists, we know the consequences of certain actions, we know there's suffering in the world, and whatnot. Do so many people live in blindness and bubbles that when faced with a real life situation, it affects them that much? Do the slightest bumps on the road feel like a car crash? Does caring about someone only concern certain life issues? Like when a boyfriend/girlfriend breaks up with a friend of yours, is that where the limit goes for how much support you can give? Or do we chose to ignore certain REAL life and focus on the bubbles?

5. Or is this a matter of life experience? I've experienced a lot of shit in my life. I've gone through a lot too. But, as a wise N once said, that is, LIFE!!! But then it makes me wonder, if what I've gone through is LIFE, then what the hell has everyone else gone through? No ones life is perfect. No ones life goes smoothly 100% of the time. We've all had our colorful experiences to a greater or lesser extent. But then it makes me wonder, are my experiences THAT drastic that dealing with other life issues makes it easier to cope with, where I can even see the positive side of it when in it? I can't be that much different from others? Or am I? Or is it a combination of everything?

Now I'm not concluding that people are bad, or evil, or shitty friends. That's not my intention. I guess I'm just trying to understand why I'm having a hard time understanding all of this. Then it clicked to me, I cannot empathize because I do not understand. Logically, I do understand. I understand that some people feel like this. They can't cope, they can't deal with this, and justly so for a million reasons. Reasons that are none of my business. But to what extent is it, OK? How will people deal with life when life when the shit hits the fan. Because let's face it, the shit will hit the fan, for everyone, at some point or another. I'm not being sadistic, I'm being realistic. I don't know, maybe I'm seeing this way too much from my own perspective, but I'm trying to understand...it's just hard.

Why I thought of all of this? Because it astonishes me. Human behavior, the most fascinating behaviors in the world. We are, I think, completely irrational beings. Only some have the ability to be rational, and only in specific contexts. I think I'm going to dig myself into a bit of this research. Because I'm lost. I don't want to read a regular book about this. I want hard core scientific facts. What does the freakin' research say!!!

I always have to do a blood test before chemo.

you.chose.the.wrong.person.to.tick.off.

/H

Just got the post and a letter from my doctor. Wow...he concluded that it can take a year until I go into complete remission. Of course I will start going into remission before then, but just putting it in words...one year. But whatever...I'm not going to define my health according to a rapport. I'm taking it one day at a time, and focusing on healing my body every single day. Just like a to-do list, do it, tick it off, and before you know it, you're done. So, let's just see healing as that...a to-do list haha.

So here's my date: 22nd of September, 2012, I should have already gone into complete remission. That's my date and I'm sticking with it (well, for now at least haha.)

/H

I've always liked Mondays. It's the beginning of a new week, fresh start to everything, and new energy to invest in things. I started my morning with a nice breakfast and a cup of coffee. Made a lot of phone calls (surprise surprise) and congradulated my lovely and dear friend, Nattis on her birthday. HAPPY BIRTHDAY...AGAIN ;)

So, things are going a bit slow with the processing of my admin work that needs to be sorted. Basically, I might be without money for a while because of beauracratic procedures. On top of that I've spent like a great portion on money on expenses that should have been covered by them. So, when I get money I hope it will be a nice retroactive sum, but until then...I'm a bit broke and I don't want to touch my savings (although I've had to take quite the dip into that too.) Ah the joy's of money. But whatever, I've been a poor ass student, it sucks but what the hell? Money isn't everything and I'm living at home at the moment so expenses are not too bad. 

Update: Aaaaaaand I just got a beautiful phonecall from my Social Insurance Welfare Office telling me that I cannot get money back on some of the taxi trips I've been taking because of my hip which I am technically entitled to. So, I asked her to tell her boss to call me back immediely. I also told her that I would be sitting by the phone like a guard dog waiting for this phone call. I'm sick and tired of authorities. They will do anything...ANYTHING to get away from doing work...ANYTHING!!! Fine, if you don't want to do work, let's talk to your boss who is responsible for you and we'll see what they think about that. And if it means taking a tough tone with them so be it. I'm not going to be pushed over for ANYTHING!!!

And let's end this input with a piece of advice. Don't EVER take NO for an answer. That's what THEY want. And don't ever let them confuse you, it's such a sneaky trick that they use to get YOU confused. Follow a red thread and STICK WITH IT!!!

/H

...have you met my friend, Hebbah? She's a bit down tonight because...

...sometimes her heart hurts a bit and it makes her eyes sad.
...sometimes those damn tears fall down her face and they won't stop. Stupid tears!!!

I've come to realize that when I sleep at my parents place that I always sleep so much better. OK fair enough, I wake up a few times throughout the night, but nowhere near as much as I do when I sleep in say, Örebro. I remember having this conversation with a colleague of mine and he said that it could be the energy in my bedroom. Maybe moving my bed just one meter to the right or left could make difference in the energy flow passing through the room. Or maybe, I've just always been use to having my bed up against a wall all my life, but in Örebro, it's the center peice of the room, hence the weird sleeping patterns. My sleeping patterns are also sensitive to day light. When the seasons change...I'm a gonner. I can't sleep properly, I wake up ALL the time and I just don't get the rest I need. I've never been much of a sleeper so you can imagine that the little sleep I do get, is precious. 

Maybe I need to move my bed a bit when I move back? Or maybe I need to just rearrange things in my room. I know that the color blue has always out me at ease, hence why my room is shockingly BLUE haha. Blues, reds, purples, and colors in warmer tones have always brought me more ease, mentally that is. That's why my entire apartment is splashed with these colors. But like I said, maybe the problem is in the position of certain objects rather than the colors they posess. 

Hmmm...thinker...thinking....thinking...still thinking...need to read more about it. I'm convinced that these things have an effect on one's mental well-being. If anyone has any tips I'd be more than willing to read more about it ;)

/H

When I woke up this morning, I WAS IN PAIN! Like we're not talking the pain I had in my hip...no no...this was ALL over my body. At first I thought that I has just slept weirdly...but then I got up and OH MY GOD...I could not believe it. Imagine someone has been beating the crap out of you ALL NIGHT LONG!!! I could barely shower, I could barely put my clothes on, it HURT...everywhere, everything HURT!!! When I asked my nurses about it they just calmly told me that the chemo is now starting to kick in. I knew it would take a while to kick in...but this just felt so SUDDEN. My body was SCREAMING of pain. Solution? More pain killers I guess. But I have to learn to distribute them evenly throughout the day for them to have a better effect...hmmm..pickle...I'm so crap at taking medication...for example..I forgot to take my second dosage of cortison last night..not good..but not too bad in the greater scope of life...and my Dr. was not too bothered by it ;)

So, I've been trying to keep myself busy during and doing what makes me happy. What makes me happy? A LOT!!! I'm like a child in a huge playroom. I cook, I experiment with cooking, I sew, I do some research, I write some stuff down, I read, I play with Hutch, I think, I cry a bit (to get some steam off), I make faces infront of the mirror, I start making stuff out of nothing. It lessens my stress, and it helps me focus on other things...and well..I love it.

We talk so much about detoxing our body's from all the shit that we stuff our faces with. But detoxing our mind and soul is usually left untouched. I've realized so many things over the past few weeks and I've been trying to document it, trying to make sense of everything. I've been reading a book that my professor gave me, "The 22 (Non-Negotiable) Laws of Wellness." Let's just say that the book is blowing my mind away. It's like the author is reincarnating me haha. I'll write more about it in another blog entry...so...much...to....say!!!

Anyway, I'm going to end my day with a light hearted book, more of "Shit my dad says."

Good Night!!!

/H

So, no news...I had my third chemo date today. Yet again, I stretted in there (well, I rolled in there, but you get my drift) and chit chatted away with the nurses and the rest of the patients. Of course, all dressed up (even though I was contemplating not getting dressed at all with the pain I was in), nails painted, hair done, the lot. I walked in there...smiling...unafraid..and determined. It's hard...I'm not going to lie. It's hard succumbing to the idea that I am in the process of getting weaker and that sometimes I won't have control of the side effects that hit me...especially when they come so suddenly. But nevertheless, it's only temporary. I intend to live a long and happy life, if it means getting weaker for just a couple of months, so be it. The hardest part, hands down is the emotional war the cortison is causing me. One minute I'm happy, hyper, content. The next minute, I'm furious, anxious, and crying. And by the end of it I don't even know what hit me or why I felt the way I did...or what triggered it. It's frustrating to be like this. I know it's the medication, or maybe the medication is just bringing out feelings I already had. I don't know...but I'm trying to find out :)

/H

So I spent all of yesterday and most of today at the hospital. Yesterday as mentioned to check the pain in my arm and today to discuss my treatment so far and check my blood levels. I had a nice long chat with the doctor which made me happy. It's just such a contrast to have a doctor that sits down and listens to me and answers ALL my questions as many as they may be. No stress, no frowns, no patronizing, just us...talking...about ME. He's amazing to tell you the truth. Everytime I have the smallest request he attends to it immediately. I was talking to him about my neurotic concern about weight gain and he immediately referred me to a dietition. The same when I asked him before about exercizing, he immediately referred me to a physiotherapist. I'm just not use to this, especially with the bad experience I had in Örebro. It's like heaven and earth...here...I'm in heaven. Who would have thought? I'm doing chemo and I'm in heaven haha.

So far my blood values are A OK! I'm reacting the way I should be to the chemo. Immune system on the decline - check! No diabetes in sight - check (woohoo!!!) And so on and so on...

Tomorrow is my third date with Mr. Chemo. I wonder what he has up his sleeve this time? Maybe a three course meal? A romantic walk by the bridge overlooking the city? Or maybe a surprise shopping spree? HAHA! Yes I have a very wild fantasy...although according to Einstein, creativity is the source of genius...hehe. All jokes aside, I can't believe three weeks have gone since I first started dating Mr. Chemo. Somehow time has gone so slowly...in other ways...time just flew by.

Fantastic NEWS: I finished ALL my admin work for my social insurance and applications for transport assistance. Everything is sent and all I have to do is WAIT!!!! It took....toooooooo...LOOOOONG!!!!

Enough!

/H

I spent my entire day at the hospital today. I was told to come in after complaining about my arm. They suspected that either I had a blood clot or that the area where they inject my chemo hit some nerve that was acting up. So, they did an ultrasound to exclude the blood clot theory. The doctor had a hard time finding my veins and vessles because they're so thin and tiny. But the good news is...NO BLOOD CLOTS!!! Don't ask me why I'd have one but apparently the symptoms could resemle that of a blood clot. But he did put me on some warning list so that if I experience this pain again in the near future, I'd go straight to emergency and be prioritized. 

I have another appointment with me doctor tomorrow for a check-up. We're going to do a full blood count to see how Mr. Chemo is treating me on our weekly rendevouz. Then Thursday I have my third chemo date. 

Right now, I'm in pain. Everwhere. My stomach, my hip, my mind, my arm, my everything. And I feel like the Michelin man. And I'm butched ("bushed" for the regular people out there who chose to use our mainstream English to communicate.)

I'm exhausted.

I feel like my hand and arm are going to explode. I'm feeling an explosive pain in the arm where they injected chemo. It keeps swelling and the pain is unbearable. I think I'm going to have to talk to my doctor tomorrow, I can't keep having this...or can I? It's a side effect I know...but it's not a pleasant one.

To top it all off, my face is now rounder than the moon. And my neck and shoulders have puffed up too. THANKS CORTISON...YOU'RE THE BEST!!!

/H

So, I had some time on my hands today and I decided that I wanted to make a pillow. After all, pillows are the easiest things to make. But, I was lazy and I didn't have the energy to sit and sew. So, I stapled the pillow together. That's right...STAPLED! It sounds freaky but it's not.

The key is leave enough margin between the staple and the fold so that when you fold it out again, you won't feel the staples. Now it's not the perfect pillow, but nevertheless, it took 15 minutes to make and I love it. Why? Because I made it hehe.

How to make a pillow in 15 minutes.

Necessary materials: fabric, pillows, or any other stuffing of your choice. I have seen others stuff old clothes in there, but I don't know how comforable that is.

Making the Pillow:

A part of my treatment is eating 50g of cortison once a day. Taking cortison for a long time can have a lot of side effects on your body. The cortison increases your insuline and therefore increases your appetite. Your body also tends to hoard water. Now, in order to avoid an excessive weight gain during this time is to eat small portions but often. So perhaps 6 small meals a day. Another important thing is to exclude carbohydrates or any foods that contain complex polysaccharides which are often the villains in weight gain, especially in combination with medications such as cortison.

So, basically I have to live on proteins and vegetables. That's fine with me. I would rather live off that than gain a million kg. I have already developed a moon face and I can feel my body being bloated. Even though eating this food will probably not make me lose weight, I will at least maintain my weight, or limit the weight gain to a minimum.

Don't you just love cortinson. BASTARD!!!

/H

...no answers. This is what silence feels like. 

Good night.

/H