myhistiostory

Well hello there. So I went on a date with chemo again yesterday. I came on time like a lady should, and I got all dressed up for the second date. This time I thought I'd be a bit more funky with a tie and suit jacket. He was impressed..in fact so impressed he stayed with me for 30 minutes...a WHOLE 30 MINUTES. I can tell you this, he's getting better. It's fun. I will never fall inlove with him even though he will save me from the villain himself, LCH. I just don't want a long term relationship with chemo, just a fling ;) Nevertheless, he's charming, entertaining...and just a bit mystical. Ah chemo...what have you done to me? Got me talking JIBBERISH!!!

In all seriousness though, I've just been taking it easy today. I've been making so many phone calls over the past two weeks and I just wanted a break to chillax, and chillax I did...it was after all quite the date ;)

I'm going to make a video later today so for now..here's a bomb of pictures from my first and second chemo DATES. Let's not call them sessions, it's so booooooriiiiing!!!

So, I've started to feel some of the side effects of the treatment. Last night I didn't sleep until 4am because my veins were pulsating and hurting me in the arm they injected the treatment (don't have a port.) I've also been feeling a bit of nausea and sickness, but nothing too bad. I get dizzy at least twice a day. But nothing dramatic, nothing drastic, and nothing I can't handle so far. 

Tomorrow, I have my next chemo session. One step closer towards the end. I'm happy!!!

/H

...with one daughter doing chemotherapy and the other daughter in Lybia in the middle of a warzone. Sorry!!! But don't worry, we'll make it through, and we'll make it up to you ;)

and this is how I feel!!

I have no problems making phone calls to authorities, in fact, I quite enjoy pointing out their mistakes, inconsistences, and bullshit that makes no logical sense whatsoever. But what I cannot STAND is the endless waiting on the phone..."You are number 3 in line..." number 3 in line basically means they're on a coffee break and cannot be asked to answer the phone right now. Well...that's the story I've construced in my head anyway. But the best part is...the glory of the story is waiting in line for about 30 minutes only to find out I should have been waiting in another phone cew half an hour ago before their office closed. Alternative scenario: you get to them but the person in question has NO idea how to handle anything...and ends up having ME do all the work. Makes you want to break out in song don't you think?

I'm not pissed off though...just tempted...very very...tempted!!!

/H

For the past 2 hours I've been drowning in papers, trying to figure out what's what. Receipts, forms to fill in, letters to write, days to figure out, papers to be signed, sealed and delivered tomorrow. Man oh man, I can't believe though that I managed to fix it all in two hours. I'll tell you now, it's not easy being on long-term sick leave. There's so much administrative work involved you wouldn't believe. But I did it, FINALLY!! After what seems to have been a billion phone calls and a sea of information to take in, I think I'm ready to print some papers and send everything off to everyone. Hopefully this will be the last of it. Fingers crossed though that everything's right!!!

Tonight was a pleasant evening though. My oldest and best friend and her fiance came over and we sat for a couple of hours talking about their wedding. We had a LOT of laughs which was a nice break of the day. Then I skyped with G in London, a few more hilarious laughs there. It's always nice to end the day with laughing...at anything and everything. Don't end the day with admin work, or you might end up looking like this:

It's taken me a while to land to say the least. So much...soooooooo much keeps happening. A rollercoaster ride is a swing in the park in comparison. So many authorities to contact, so much paperwork, so many things to deal with, and all at once for that matter. On top of that my medication has got me speeded up and I keep forgetting things because for every thought I have, a hundered more expload in my head. I know I know, anyone reading this and knows me might raise an eyebrow or two and think there's no difference between pre-treatment Hebs, and during-treatment Hebs. But I know ME, and I can feel the intensity of my thoughts, they're bouncing off the linings of my brain. I'm pretty sure my neurostransmitters are travelling at the speed of light at the moment...at least that's how I feel.

So, to solve this problem. I've developed a routine that I only began implementing today.

• I get up at around 7.30-8.00 (this is quite late for me, but then again, I'm suppose to be healing my body, not depriving it of well-needed sleep.)
• Take a shower and get dressed.
• Cup of coffee/tea, breakfast, take my medications, read the news.
• I wrote a "To-Do" list the night before of what I want to do today (or what I think I want to do ;)
• The list is divided in two parts: Morning (9-12), and Afternoon (13-17).
• Mornings are high-priority things that need to get done, and afternoons are for the rest of the things I want to do.
• Evenings are open for anything that I feel like doing. Cook, read, paint, watch movies, friends come over, or even work if I feel up for it.
• Thursdays are treatment days so the schedule will look different.
• I will also have meetings with the physiotherapist that will help me work out my body to the best of my ability during treatment. I need to prevent physical weakness and more health problems. So when that happens, I will be incorporating workouts into my schedule.

So I haven't updated properly for a couple of days. Just been trying to spend as much time as I can with Nattis. It was amazing having her here, in fact it was the best. It was just what I needed. We spoke about everything from heaven to earth. She took care of me, she let me vent, she even watched me get super hyper from the medications and took it like a champ haha (I think it was harder for me to deal with than for her haha.) She even watched me butcher a spider...well...tried to anyway (it's DEAD, I don't care how :)

After she left I decided that I was going to try to exercize for the first time with my wheelchair. It was afterall a beautiful day and I'd be a fool not to take advantage of it. So I did. It was hard, much harder than I thought. Rule nr. 1: never try to roll your wheelchair with normal cotton gloves, you won't be rolling that's for sure. Your fingers will just be slipping. Anyway...I also realized that it was much harder rolling fast on an uneven ground. It took so much effort and I've obviously become weaker from the lack of activity over the past two months. Add that to not being use to the wheelchair, and well, it's hard. Now, I'm not going to give up just because it was hard. I will train myself to learn. Simple as that. It was the first time and I have to give myself a break. 

BUT...today was the day I realized that I was sick. By the time I reached my destination my upper body was exhausted and my arms were shaking. I knew that I wouldn't have the energy to roll myself all the way. And it's not like I could just walk back, I didn't have my crutches with me. So I went to the nearest busstation and took the bus. To get home I'd have to walk up a flight of stairs. I couldn't do that with the wheelchair and my non-existing hip. So I had to call my mom to help me. But my dad comes running down after her and well....he was not very happy to say the least. He refused to let me walk up the stairs. He yelled at me for even going out alone like that, and he just didn't think I really understood how serious my condition is right now. He went and got the car, drove around and picked me up to our doorstep. It's not that he doesn't want me to exercize, quite the contrary, he does. But I guess all he meant was that I should be rational about it.

That's when it clicked to me. I'm sick. I do not have the same capacity or independence to do what I want. I depend on others to do things, to get me places, to take care of me, and to help me. For me, that's a very, very difficult thing to have to accept, or understand for that matter. Yes, this is a temporary situation I'm in. Nevertheless, it is the situation I'm in RIGHT NOW!! This is my reality right now. When my mom comes into my room every morning to serve me coffee, it's like a foreign concept to me. I've never had anyone serve me ANYTHING...and when they do..I feel weird. I value my independence, A LOT!!! Of course, if someone WANTS to serve me, that's fine. If they want to do things for me, that's fine too. But, when I'm in a situation where I HAVE to be helped or I HAVE to depend on others, that's when I start to freak out. It clicked to me that right now, I'm sick, and I need help to get better, whether it be from my parents, my brother, friends, or chemo, I need help. Now I'm not saying I'm going to feel like this forever. Slowly, I will develop my independence again. And yes, I am extremely gratful that I DO have people around me TO HELP! It would be worse if I needed all this help but had no one around. I'm lucky, and I appreciate that. I guess that today, I just faced a reality that does not coinside with who I am and what I'm use to, and that was hard. I had to come to terms that I have a weakness, not just a physical one. So, I cried. It helped.

I feel better after talking to a dear and wonderful friend of mine. I'm a very stubborn person and sometimes I will bark like a little dog refusing to listen to good advice believing that I can do everything, anything the way I want to becaue I can always, and will always take care of ME. But sometimes, when I think I'm taking care of ME, I'm actually working against ME. She's very good helping me help myself. With one REAL bark, I feel much better, and I know what to do. Sometimes I need a real proper bark to stop my annoying and stubborn barking. Only very few people I know can really BARK at me loud enough to help me stop. She's one of them!

So, now I'm going to relax, stop thinking, stop analyzing, stop with everything, and fall asleep. My brain needs it. I need it. The world needs it.

...can you feel the change in your life? I feel like a kid anticipating the first day of school all over agian. But I don't think it's going to be dramatic at all though. It's probably going to be completely...normal. I think I'm going to come home and be my normal self. Sometimes I feel like I've made such a big deal out of this, and for what? But then I remember that NO...I'm not going to undermine my situation. I've had to face a reality that not many people face (and I hope no one should ever have to face.) After all, this is the result of months and months of one LONG roller coaster ride...for me...this is soon the end of one ride and the beginning of a new ride. But at least I know where this ride ends...in remission.

I don't really know what to say. How do I look back on this day in months to come? FYI future Hebs, I've painted my nails. I've done my hair. I've picked out my outfit. I've done it all. If I'm going to do chemo, I'm going to do it right. I'm going to go ALL IN. I'm going to look good doing it. I'm going to walk (roll) in there with my head up high (even though it will be quite low when sitting in the wheelchair haha.) I'm going to smile at the nurses. I'm going to joke around like I always do. I'm going DO THIS!!! I'm ready.

I love how things just tend to mess up sometimes. It's like life is trying to mock me. It's OK life, you can try to mock me all you want. I'm not going to give up that easily, after all, you did raise me, you did teach me, and I did learn. So you can try to turn the tides in the opposite direction, you can try to strike me down with thunder, and you can try to drown me. I'm still standing. I will keep walking, no matter what direction the wind blows.

/H

...and the countdown continues. Was at the dentists today to check out my teeth. My teeth are fine averall. I just a tooth that needs a root canal which was expected from a while back so that was no shock. The question is if I can do it with chemo. Need to talk to my doctor about that.

"Chemotherapy acts by killing cells that divide rapidly, one of the main properties of most cancer cells..." I wonder if chemo can act by killing some of my thoughts that seem to divide rapidly, one of the main properties of my neuroticism (haha...chemo joke...thought of it myself...just now...FAIL.)

No...let's be serious for a minute here. I can do this. I know I can. It's not that bad. I'm so going to do this. I'll never give up. I will pull through. I will be fine. I will go into remission. I'm going to roll in there with a smile on my face. I will take it like a trooper. I will embrace it. I am happy. I am strong. I will make jokes. I will make fun of my situation. I am laughing. I am after all, a soldier (no literally, my last name means soldier in Arabic ;)

Tootles

/H

...and counting. Not feeling nervous at all anymore. Just want to get it out of the way. I thought about it today, but not in a bad way. I spoke to the doctor and he said that it has infiltrated my small intestine, but not severely. It doesn't matter anyway. I'm starting chemo on Thursday so what the hell. I'm not worried. I didn't really react. 

He also discussed with the orthepedists about the possibility of doing an operation. They said that they would gladly do one. Whatever that means?! But that the final word was up to me. My doctor recommended not to do it unless I snap in half (HAHA...LAUGH...it's funny...for now!!) He said that having this operation (a rather big procedure to stablize my hip) would also mean a high risk for infection because I won't have much of an immune system. I'll have to think about that one, but for now I'm leaning towards not having one. I just want to wait and see how well I respond to treatment.

in about 24 hours I have something fabulous to look forward to. N is coming to town to stay with me. I want to break out in song. But I can't sing haha. 

/H

It's funny how the day works. We're so consumed by everything that's going on that we forget that the day is composed of hours, that is filled with minutes, and those minutes are passed by seconds. It's funny how one second, one minute, one hour, or simply one day can change your life. August 6th, 1945, the lives of hundereds of thousands would change in one day. Nagasaki fell victim to the first nuclear bomb, "Little Boy." Three days later, "Fat Man" changed people's lives again, this time in Hiroshima. Generations to come would still see and feel the detrimental effects caused by these bombings. It took minutes.

Everday, a person's life changes. It could be for the better, it could be for the worse. All this happens in a matter of seconds, minutes, or hours. We often take for granted that our days are filled with time when nothing of great significance happens. In fact, sometimes we wish time would go faster in anticipation that something WOULD happen. Why don't we just enjoy the fact that we HAVE time? Time that spares us from that moment, when something DOES happen. Because let's face it, at some point or another, one second, one minute, or one hour will change our lives in some way. We always hope it's for the best. But if only we were all so lucky. 

My life changed in a minute. It changed again in another minute a few months later. Metaphorically, I was struck by lightning twice. That doesn't happen very often. But I'm not going to say it changed for the worse. On the contrary. Looking back on it now, even though I still haven't started treatment, even though I still don't know how much these two minutes will change my life in the long run. I do know what these two minutes taught me a lot about myself so far. And to be honest, I look forward to seeing what effect these two minutes will have on my life in the next couple of months. 

So in fifty-seven hours, in 3,420 minutes, or in two and a half days to make things simple, my life will change for a third time around. But it's OK, I'll take that change. It's for the better. In this context, it's definitly for the better. I look forward to seeing how my minutes, my hours, and my days will develop. How I will develop. How my life will develop. In time, I'll see.

A couple of friends asked me on FB how to make comments in the blog (for those who don't understand Swedish). At the end of each section, there's a row with the date, the category, and "Kommentarer". Click on this, it means "comments." Voila...you can comment.

...and counting until C-Day. I'm afraid to go to sleep. Everytime I fall asleep it's one day closer to THE day. It sounds so dramatic. I think it's just hitting me. I'm not distraught. I'm not crying my eyes out...YET! But I am counting. I tried hard not to burst out in tears all day. I woke up reminded that today is the end of this week. Tomorrow is the beginning of a new week. I don't want to cry. I don't want to be sad. So I do everything I can to keep myself from being sad...or from crying for that matter. I read a bit of a book. I played with Hutch. I watched a few episodes of a series. I feel like I'm going around waiting for WWIII to begin. There's a knot in my stomach.

I keep trying to focus on the positive things happening. I look out my window and admire how Fall colored our garden. Fall is always the most handsome of the seasons. A splash of brown, a dash of red, and hints of yellow. The wind slowly breezing through putting the leaves in motion, swinging, almost singing the sweetest lullaby.

Where are you going, Fall? Take me with you, please!!! I'll go wherever you want to go, don't leave me here.

But he will. He will leave me here. I will stay put, watching Fall fade away. He never stays forever. Winter will come early this year. I can feel her presence in the air. She's become impatient. She's jealous of Fall. I can feel chills running through my skin, deep in my skin. She wants my attention. But you're always my favorite, Fall. You're always the beginning of new fun things. Why not this time? Why did you give me something different to look forward to? Come back, let's be friends again. 

Today wasn't the best day. But today is still a good day. It could have been much worse! I did good. I pulled through. I'm still smiling. I'm still standing (literally.)

I'm OUT!!

/H

Not only is LCH a very unusual disease and that I'm 1 in a million adults who get it. Not only is it hard to define what it is (autoimmune or cancer). They treat it as both. 

The chemotherapy is for the cancer part of the disease. The steroid injections are for the autoimmune part of the disease. The side effects of both...JOY!!!

Most Common side effects of the particular chemotherapy drug I will be taking (medium-high dosage):

I can feel how weak my body is. My whole pelvis is screaming of pain at the moment. I can feel how lose my hip is, it's so fragile. It doesn't help that I've got a cold. My kidney's are hurting too. AAAAAH...everything is hurting me...I'm in pain...everywhere...

Codeine my love, come to mama. Let's get high shall we??

/H

My cold continues. But not for very long hopefully. My personal remedy is: lemon, vinegar, and garlic. Why?

Lemon: Vitamin C has been shown to boost the immune system. When more white blood cells are present to fight infection, the life of the offending virus is cut short. Lemon juice also decreases the toxicity of the virus in the body. Your entire body won’t be wracked with pain and suffering like it is when the cold is untreated. In effect, lemon juice shortens the duration of the cold. (copied and pasted)

Vinegar: If you have a congested chest (which I have) the vinegar helps clear this. You can either inhale it in steamed water or mix it together with the ingredients I take. Your body also becomes more alkanalized (if that's a word) when you're sick. Vinegar helps revert this process.

Garlic: In general antibiotics are ineffective against viral infections of the sort that cause most colds and flu. Fortunately garlic isn't "just" an antibiotic. As well as the powerful antibacterial allicin, garlic produces a number of other potentially beneficial compounds. Scientific research has also shown that people taking garlic can suffer less from colds than a control group. There is also plentiful anecdotal evidence that taking large amounts of garlic at the onset of a cold can reduce the time taken to recover. (copied and pasted)

So...I'm in a wheelchair, right? Which means I can't really exercise, right? Which means I'm going to get weaker, right? Which means I should sit and feel sorry for myself, right?

WRONG!!!

Did you know that you burn a lot of calories after 30 minutes of wheelchair-ing? I mean they have the paraolympics...so OBVIOUSLY people don't let the wheelchair in their way...quite the contrary..they use it to their advantage. As will I!!!

So, when I have the energy (and get over this cold), I will get my gear on and wheel off in my wheelchair. It also builds up upper body strength. I looked at some research and the most used muscles are the biceps, triceps, and shoulders. There was one muscle that wasn't really activiated (despite previous belief that it was), but who cares. And if you tighten your stomach muscles when pushing, you will strengthen them, too.

I still have a healthy upper body, right? (Fine, except my fractured ribs, but they're not too bad). I'm not permenantly broken am I, right? So, I'm not going to let a wheelchair stop me from being healthy, especially not NOW!!!

To be honest, I was inspired by a person I met recently. He's a lovely guy and he was diagnosed with a very, very rare autoimmune disease that impaired his hearing. The disease also temporarily impaired his balance and he was told that he wouldn't regain it again. He proved the doctors wrong and even teased them about it by dancing on the sidewalk I think it was. How cool is he? Now he's an ambitious student with a lot of intellect and wisdom. Thank you for inspiring me. 

Tootles,
/H

P.S. Chemo starts on Thursday. They had no available times on Wednesday. Better for me, I can't start chemo with a cold.

If anyone wants to look at older posts. Look at the right hand side. Scroll down a bit. Under Arkiv you can click on posts published each month. There are only 2 now...but remember that there are 6 months to go ;)

OR...you can go to Kategorier and chose what you want to read about instead.

/H

I have a cold. I'm caughing my pretty little lungs out. I can't breathe through my snout. Luckily, I don't have a fever. I think my body is just trying to get rid of the virus.

It's so weird. I haven't had a cold in over a year and a half now. I've had migranes, stomach aches, and very mild things. But I haven't been "sick" in ages. Last BAD thing that happened to me was food poisoning last summer. That was HORRIBLE!!

I rarely get sick actually. OH WAIT!!! I don't get sick. I GET LCH!!!! MUUUUUAHAHAHAHAHAH!!!! C'mon, if I'm going to be sick I might as well go all out. I don't just accept a cold or some bullshit virus, that's too weak for me...I need a challenge. I need something to FIGHT!!! Something unusual. Something not even the doctors have heard of. That's so typical me hahaha. (It's OK...we can joke about it...I do..ALL THE TIME!!!!)

My mom came into my room before she went to work with a huge thermos of coffee and a small packet of milk. How adorable is that? She doesn't want me walking up and down the stairs between the kitchen and my room so she brought the coffee to me. I'm not use to being spoilt, nor am I use to being taken care of (you know, the whole someone does everything for you when you're sick - usually I just get on with it). 

Yesterday, in the waiting room, my mom and I could hear a child screaming for her life in one of the rooms. I kid you not, this kid was crying to the top of her lungs, begging them to let go of her. They were screams of torture. She was terrified. My heart stopped. I closed my eyes in hope that the screams would take away the chills I got running through my spine. It hurts me to hear a child scream in pain. It made me feel ashamed of myself. What the fuck am I complaining about, or worried about? I can handle this. Can a child? They're the true heros. They're the one's that deserve the praise and the admiration.

I dreamt about her screams. I was in a maze and I could hear the same scream. It was pitch dark and only small candles were lit to help me see if I was at a dead end or not. I was running fast, trying to find my way through to find the kid, to help her, and take her pain away. I kept getting lost. Her screams got louder and my heart pounded harder and harder. It was freezing and I could see the fog of my breath. At the same time, I was sweating and shaking. I had to find her. But I couldn't. I felt distraught and helpless, teased by the sound of her pain. We were both being tortured. If I can't help her, who will? I woke up, and I'll never find out.

Was the kid in the dream, me? I don't know. I don't know much these days. But I do know that children who are in pain, make my heart cry.

My brain is fried. Information overload after my meeting with the Hematologist. I'm starting chemo next Wednesday. YAY! FINALLY!!! Who on earth gets excited about starting chemo? SCHMUCK!!!

We haven't gotten it confirmed. But the Dr. said it wouldn't be surprising if my muscles and instestines are inflammed. It's a part of the disease. Let's party shall we?

Conversation with the Dr.

My dad calls me after getting the rest of the pictures from the scan. My small intestine is highly inflammed and we need to know why? Is there internal bleeding that we cannot detect? Has the histiocytosis infiltrated my intestine? What's going on? Abover that, my muscles in my back and my chest are very very inflammed. Of course, this could be because of tension or walking with crutches. But why? The suspected lesions he found from the CT were also highly contrasted. Additional lesions or something else. The bone marrow in my spine was also highly contrasted. Something to do with my anemia? I DON'T FUCKING KNOW!!! 

Let's find out in a couple of hours. I'm dressed. Had my coffee. Nails painted and pretty. Just going to fix my hair and head off to the hospital. I'm starting to hate hospitals.

/H

OK...so yet again, I started my morning with shitty news. But first, let's turn back time to about mid-August. A radiologist put me through a CT-scan that isn't as advanced as the one's used today. Basically, technology has advanced. That was the first mistake. Mistake number two: she sliced up the pictures really thick. When examining oncology-related scans, you have to slice the pictures up really thin to capture all dimensions and aspects of the tumors/lesions under examination. Mistake number THREE: her conclusion was that the lesion hasn't developed, that it's smaller than what the dr's evaluated in Egypt, and that I have no risk for fracture, AT ALL!!!!

OK...so far so good.

My gut instinct was that something didn't make sense. So, I demanded to do a CT-PET before I started my treatment. They made me wait for 2 and a half weeks.

My dad calls me this morning and tells me not to move, not to go anywhere, and not to do anything. The lesion in my hip has spread so much, there's 9mm left of it. There's nothing left. One wrong movement and I will snap in half. We thought it was bad before, but this is worse. My disease is acting quite aggressively...more than we imagined.

I've been laughing all day. It's either that or crying. I chose to laugh. It's the easier way out of the chaos I'm in.

I came to Örebro walking. I'm going back to Stockholm in a wheelchair.

SMILE...you'll live longer and you'll look prettier in whatever state you're in :)

/H

Second migrane in a week. Had it all day. It wears me out, I'm so tired and I have no energy to do anything, not today anyway. It seems to be a common verse since I started this blog, "I'm exhausted," "I'm so tired," "I'm sleepy..."

I got a phone call today that just made me burst into tears at work. It was nothing about my health, just about how to get the financial benefits for all the cab rides I've taken to go back and forth to the hospital. The woman who called me from the hospital is a complete idiot. I actually had to tell her halfway through the conversation to call me back because I could feel the tears press towards my eyes fighting with all they have to come out. As soon as I hung up I burst out crying and ran into my colleagues office. She was just saying the most ridiculous things and I just couldn't take another battle. But I've cried it out..my bestest colleague and friend gave me a fantastic peptalk and now I'm fit for fight again. I'm going to pulverise her over the phone. Honestly, I don't care....don't fucking mess with me right now...I've had it up to HERE!!!! (If you saw me in person you'd get what I mean....my eyes are on fire from rage).

Unfortunately the journey towards recovery doesn't only concern my health, it's everything around it. It seems though that this is the biggest battle I have to fight, the health care system. But as GOD IS MY WITNESS...I'M NOT GOING TO LET THEM WIN.....BASTARDS!!!!!!!!!!!!!!

Over and fucking OUT!!!!

/H

So overall, today's been a good day. Well the second half of it was a good day...and I'm going to hang on to that second half because that's what counts. Because of that, I'm sharing my happy thoughts and mood with anyone who's interested :)

For everyone who does not understand Swedish...here's the English equivalent of the video posted earlier.

Uploaded another video.

Bad headache today...little sleep, lot of work..the usual menu.

My colleagues got back from Croatia on Monday. It was a bit hard for me to look at them. So many of them were complaining and questioning why they had to go to Croatia and then came back all fabulously happy. It kind of annoyed me a bit. Here I was, over the moon that I was going to go to Croatia and work, and I was forbidden to go because of my stupid hip. Of course I'm happy for them, but YES, it BITES!!!!

A colleague put up some pictures of facebook from their trip. I looked at one picture and couldn't look anymore. I don't know what's with me? I just can't seem to look at any pictures, somehow they just all remind me of my disease.

Sometimes it clicks to me...in the midst of all my chaos, that I have a disease. It's weird. But maybe that's a good thing. I never want the disease to define who I am or what I am. It's only a part of my development, one stop on the road. I refuse to make it my entire life, and I refuse to let it cripple me into something I'm not and will never be. But it's hard to keep on that trail of thought, sometimes it feels like all I'm dealing with all day long is my disease (phone calls to doctors, researching, reading, pain).