Monday, January 31, 2011

8 Back on the table

As if this day hasn't been more that enough for me with the pharmacy.
I also got the date for my next surgery.
Its on Wednesday. First I was a little oh my god its to soon.. But on the other hand, I just want those bad cells to get the hell out of my body, and stay gone. And if they never come back that will be just fine with me :)

The good news was that I am not removing the cyst. The doctor wanted to wait since I haven't had any babies yet. But they are going to check it out in three months. And if it gets over 6 cm big, then they will remove it.
I am glad that they are waiting because it is a real chance that I might loose my left ovary.

2 To be sick.. Part III

Finally, my doctor have written the right prescription. It only took 3 tries.
He had written 4×5 in stead of 1×5 and Reit:3.
Reit in Norway means that you can get the 1×5 4 times when the Reit says 3.
He also wrote no change so that the pharmacy couldn't change to a cheaper patch.
My happiness was complete, finally no more problems.  I was Wrong. When am I right anyway?

I now say that I hate pharmacies and their rules and regulations.
I was going to get my Durogesic Patch, an thought that I would get Lyrica when I was going to the pharmacy anyway.
Here comes the kicker, because the two prescriptions had different dates I had to pay the maximum fee of 520 kr two times.
What the ¤%%¤, I thought that the maximum fee was there for a reason, so that you only had to pay 520 kr when you picked up all of you're medication.

Pharmacies should be categorized as hazard sport, you never know if the trip to the pharmacy will take all of you're money or give you a heart attack??

Sunday, January 30, 2011

2 Yoga

I resived a comment that I should try Yoga, and yesterday my book about yoga and other Tibetan medicine arrived. I am going to try and read the book next week, unfortunatlly this last days has been painfull.
But I still try to get enought proteins in me, and keep myself  hydrated. I also wach a lot of tv. I like to have something in the background when I have pain peaks.
However I wanted you readers to be able to do Yoga too, so I did a little digging on youtube and found a few treasures for all who wants to try out Yoga :





She has many different Yoga videos on Youtube. Everything from Guided meditation through the Chakra's, Yoga for neck pain, Yoga for weight loss,  Yoga for abs and core strenght and  Yoga for killer legs just to name a few. And the lovely instructor is  Esther Ekhart.

Saturday, January 29, 2011

0 Saturday....

First things first, we picked up our new kitchen shelfs, and hopefully will everything be there.
I think that it will be nice getting everything of the floor. Because even thought we have a normal sized kitchen, it has too few cabinets.

Om the other hand is the last 20 hours been painful. Last night has been one of the hardest one in a long time.
I have been thinking real hard if it was something I ate, but I haven't eaten anything unusual.
I just have to try and relax. easier said than done I know.
Again I guess that help will come my way in time. I just have to be patient.

Friday, January 28, 2011

5 My new coffee table

4 My new funiture...

Soo finally after a long search for the perfect coffee table , I finally found it..
I have used a year to find this, because I have this good chair, but it is impossible to sit there, because there is no where to put you're coffee cup, or water glass. But now I have found it.
But I also bought this ladder shelf to have in the kitchen. But I cant buy anything without something being missing or broken.
All the screws where missing and the bottom of one plank was broken. So of course I have to change it tomorrow.

One the other hand I am very tires lately, and esophagus spasms are coming and going. Not very fun. But it has never been fun.
We are having this thought that not enough sleep might make the esophagus spasms appear more often.
I have to lay down now.. Mayor esophagus spasms.....

Wednesday, January 26, 2011

3 After a Good day comes.....

Good days Please come again...
Now I have had a few omelet days. I think that maybe that is heaven. The good days in life, that is what makes us belive in the good.
To belive in something that makes life worth living. What would I miss if live felt like hell? Maybe that is hell?
Or maybe that is heaven? To learn that the good comes with the bad.
You can never enjoy the good, if you haven't had the bad!
And I get that theory, because I would never dance, eat, exercise etc if I had a bad day. But when I have a good day, i would do all of the above + a hole lot more.

If I could have just one day with no pain, esophagus spasms, and a healthy lung I would go hiking, mountain climbing, go cross country skiing in Antarctica. take a dog sled ride, Work as a dermatologist, and take my boy out for a travel around the world.
Okay so I need more than one day to do all that.
I guess that means that I have to fight to find something that will make me better, or a cure. Because I need about one good year to do it all.... I need heaven on my side that year.... one year of omelet days :)

Monday, January 24, 2011

6 When is it going to stop?

I have been to the hospital today, and it seems that they have gotten the cell changes from the colposcopy I did in December. But here comes the kicker:
I have some cell changes in the cervical canal And they want that taken out, so I have to have another surgery.
Its not over people, Do I ever have just one ting happening to me when I am in or at the hospital?
No, No, NO.... I also have a Ovarian Cyst that has grown form 3 cm to almost 5 in 2 months. Or since I did my first biopsy of the cervix.
I didn't think to much about it then, because I have had cysts since I was 17 years old. My doctor wanted to talk to another physician about removing it. They also took some blood work on me to rule out cancer cells.
So in a week I know whether I am just having the cells changes taken out, or I am also having either a laparoscopic surgery, or open surgery. It all comes down to how it looks. My doctor also said that I stand a chance at loosing one of my ovaries. I guess I just have to take it as it comes. Not much I can do with any of this anyway.

But it wasn't cancer.....  I don't have cancer.. and that is good news..

Sunday, January 23, 2011

0 Kicking myself in the back..

Its a saying in Norway that when you do something that you know will have the opposite effect that you are kicking you're self in the back.
I do feel that I do that when I am eating, I know that it will be painful afterwards but I do it any way.
The only time food has gone down without esophagus spasms was yesterday. I guess that will be a mark in history for me. The 22/1-2011 was the day I could eat without problems.

I am happy that there is a glimmer of hope for me, even though most days this will not happen. Isn't that what life is all about, hope that life will be what you dream of.
What do we people dream about: love? money? kids?house? clothes? food? or maybe clean water?
I guess it depends on what you have to begin with.
I have never even given it a thought that there are people around the world without clean water.
I live with water that other people pay for. Yes my tap water is as good as Voss and Evian water. So I don't get that others may walk for miles to get to water. I think its far enough getting to the toilet in the morning.

We have this show in Norway called; "the great journey", where people live with different indigenous people around the world.
I would have loved to do something like that. Living with a tribe for a couple of weeks in Africa or in South America would have been a live changing experience.
Two weeks on a sailboat changed the way I use water. I don't let the water run while I wash up anymore. I cant even imagine what I would learn after two weeks in the jungle.
Hopefully would I learn how not to kick myself in the back !!

Saturday, January 22, 2011

11 Saturday....

Today is one of those day I never thought that I would have, ever again.
I have actually cleaned the hole house. I have been through my jewelery, and thrown out the ones that were broken. I have washed clothes, and the kitchen is looking spotless.
And..... drum roll please.......... I have eaten an omelet!

I have promised my mom that I am not going to lie about how I feel. I have a problem in that area, I am so used to not telling anyone how much pain I have been in with my back.
I always had this feeling that people wouldn't be around me if I told them every time we were together that I was in pain. So I started to hide it, and I became very good at it, a real pokerface.
I also had this idea that if I cried "wolf" to many times that no one would listen to me when I needed help.
And I did feel just that when I told the doctors a year ago that something was wrong with my lung.
This one doctor he said that I only had withdrawal pain. He wasn't to cocky 3 days later when I was put on the respirator.
 There is one thing I have realized over the last year, I know my body better than anyone, and no one is ever going to tell me than nothing is wrong when I can feel it with every bone in my body.

I was going to write after omelet : But it doesn't stop there.............. I have not been lying on the couch after words in great pain!
But that would have been I lie, and I am never going to lie to you or to myself ever again. If I feel sick, then that is what I am going to tell you....

Friday, January 21, 2011

2 Let me tell you...

I have the last couple of days told you about what I think is wrong with being sick in Norway, and I still think that many things need to change.
But and there is a big but. I am lucky that I do live in Norway, because if I lived in many other countries I would be paying of my medical bills until I died, and still I would probably just have pain of half.
And my parents would have sold their house, and everything else that they own, because of hospital bills.

I cant even start to imagine how much it would cost to be admitted for 6 months, 2 surgeries, 3 weeks in the intensive care unit,probably 15 x- rays everything from CT, MRI and barium tests, 6 gastroscopy, 3 manometry, and blood samples.
I would probably faint if I started to put all the numbers together.
So I wont.
I guess that is the problem with humans, we will always want what we don't have.
And when we get it, it wasn't what we hoped.
But I will never stop trying even if I don't get what I want, maybe I will get what I dreamed of.. I hope so

Thursday, January 20, 2011

6 To be sick... continues!

I can just start of where I ended last night.
Now the problem is the pharmacies and there views about paragraphs.
I went to my doctor to get my prescription for Durogesic (pain patch). And my doctor did write it. The only problem is that you have to use the sheets for A-prescriptions and not the ones for blue.( A- prescriptions are for drugs, B for addictive ones and C for the rest. Blue prescriptions are the ones that the government pay for, and they are for medication you have to use for more than three months).
The pharmacist actually thought it was a good idea for me to travel up to my doctor again to get a new one!

Is that what the world has come to? Don't anyone believe that when you say that you are sick, that you are?
I don't use this sort of medication for the fun of it. I am not going to write "most of us anyway".
I know what it is like when people don't belive you.
One of my doctors he belived that I had anxiety, and nothing wrong with my esophagus. Then I had the manometry, and my spasms pressed the manometry catheter out again. My doctors jaw dropped, and that was the end of that discussion.

I do get that sick leaves are increasing and that we in the west today take more pain pills than in other parts of the world. I am not the one to point a finger, I am the last one who should point.
I take pills for headache, menstrual pain, fever, you name it. And when I take it for the smallest pain, I will have to get more when I am in big pain.
And what I should have done was, take a nap, go for a walk and check my temperature, and if it gets to high, call my doctor.
So when, and I do have to say when for my own sanity, I am going to try and listen to my body, and not the pace of the society!
So there I was at the pharmacy, and i started to cry, yes I was frustrated, and tired. One of other pharmacist came over and said that he could give me the medications on the prescription that I had brought.
Why couldn't they have done that to begin with? When they knew that they could???

Wednesday, January 19, 2011

5 To be sick..

You need to be healthy to be sick is a saying in Norway. And it is so true.
You have doctors appointments all the time, usually once a week. You have to see you're family doctor to have one place where all the information get stored. And then there is the specialists.
You also need to talk to Nav to get sick pay. And that its not always easy.
When you have done all that, then you can call Helfo to get the right forms in order so that they will pay for the medication. And you need papers that actually verifies that they will pay for the medication. And take the papers to you're family doctor, because Helfo didn't send a copy to them.
Then you're family doctor will write the prescriptions. You take a doctors certificate along the way to get the leave from school. But of course, the family doctor didn't use the word "too sick", only sick, so then you have to go back to the doctor to get a new certificate.

When all that is finally done, you need to get a physical therapist, a acupuncture, a psychologist and see them at least once or twice a week.
And of course I cant eat the semi-finished food, so everything have to be made from scratch. Cooking is therefor a time consuming affair in our household. And my boyfriends egg, and nut allergies is just the icing on a cake.
And because you're energy level is on 10%, house cleaning obligations is a time consuming affair. And somewhere in the middle of this I need to rest.
But I have a hard time resting, because then comes the thought about the future, and the nightmares when I do get some sleep.
And thats the hardest thing of all, what will my future bring???

Tuesday, January 18, 2011

6 Nissen fundoplication!

I had GERD (gastroesophageal reflux disease).
 And as some of you know, my road started with the hope of living a more normal life, especially with a hope of a more normal diet and less pain.
And as Orison Swett Marden said:“There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something better tomorrow”. This is so true for everyone in the health care system.
I asked the doctor in advance. What could I expect. What was worst case scenario etc. I have always believed that when it comes to surgery, we in society today take it to lightly. And I do know that something can go wrong.
My doctor told me that I had a 1 % chance of something going wrong, and the worst case was that i Couldn't eat for a week.
Based on that I took the chance. And today with the laparoscopic procedure it is even a smaller chance of infection, and a faster recovery time.

And of course everything went wrong. I couldn't eat for 3 months. I was through lung surgery, and I was in the hospital for over 4 months.
When I came home we started to look through the internett. My doctor had never heard of esophagus spasms with nissen fundoplication. I Googled it one time, it took me 5 min to figure out that spasms can occur with nissen fundoplication.
I quote: "Our findings suggest that patients who undergo laparoscopic Nissen fundoplication for gastroesophageal reflux disease are at risk for the development of esophageal motility disorders, including
secondary achalasia and DES (esophageal spasms)."1.I think that says it all..
I quote again: "Other complications in this group included two intra-abdominal abscesses, one pleural effusion, one gastrocutaneous fistula, and one right vagus nerve injury."2.
What is the most disturbing to me. is that my doctors at my local hospital saw a density on my right lung over a month before I was put on a respirator, but they didn't do anything about it.
Even to this day, they try to pin this on the botox, even thought I had the botox twelve days after they saw the density on my right lung. I guess they don't want to own up to giving me a Pleural empyema, and almost killing me.
I think that in a country like Norway they should only do this procedure in one place. This because Nissen fundoplication is a complex procedure, and they requires advanced laparoscopic skills.
Again I quote: "complications are directly related to the surgeon’s experience level."3.  At the hospital where I did it, they only did about ten operations a year. And that is to few!
All and all, I do understand that people out there want to get treated for GERD, and I do know that I am probably a very worst case scenario, and nobody wants to become that!

To read more about Esophageal Motility Disorders After Laparoscopic Nissen Fundoplication:
1.   Secondary Achalasia and Other Esophageal Motility Disorders After Laparoscopic Nissen Fundoplication for Gastroesophageal Reflux Disease.
To read more about Mechanisms of Gastric and Esophageal Perforations:
2. Mechanisms of Gastric and Esophageal Perforations During Laparoscopic Nissen Fundoplication
To read more about the Approach Nissen Fundoplication:
3. A Stepwise Approach to Laparoscopic Nissen Fundoplication

3 Free meditation cd

Free meditation cd.... Maybe you can free you're self from everyday stress.
Morten Eriksen want you to take care of you're self with love and respect. Not a bad vision in our day :)
have fun...

Monday, January 17, 2011

3 Peppermint oil experiment......

I  have said that i would write a little more about different medicines, procedures, etc. I thought that i would try different alternative procedures, and tell you if it worked or didn't. I will have to try some of them over a period, and then tell you how they went.

The first alternative medication: Peppermint oil.

The first: always do as the manufacturer say you should. 2-3 drops of oil in a glass of water.
My boyfriend took 3 drops of oil in a teaspoon with water. It was like hell had come up and taken a vacation in my esophagus. My esophagus was on fire, right there and then i hoped it would burn of my spasms forever,
but it "only" started some really unpleasant spasms to put it nicely.
And my boyfriend and my mother they started laughing because of the expressions in my face, and i felt like i had swallowed a big habanero.
But it didn't stop there, My boyfriend really believes in alternative medicine so he said i had to try it again, because i should try it more than once before i throw the ideas out of the window.
So i tried it again, stupid, stupid me, and once more hell took a long weekend in my esophagus. Maybe they thought that my esophagus was the Eiffel tower?

And once shame on my boyfriend, twice shame on me, so i looked it up on the internett, and there it was, most of the people out there having esophagus spasms, they take peppermint oil in capsules, and not pure oil because it is very strong.
I cant swallow any capsules yet, they are to big, so until i don't have to eat mashed food , this is a lost cause.
I am not giving peppermint oil up, there are a lot of people that get relief from this, so i hope i will to. But until i can swallow peppermint oil capsules, it will have to wait!

Sunday, January 16, 2011

6 Real funny..

Have you ever had a leg cramp before? well try having that in you're esophagus, and not being able to stretch it out or massage it. What would you do? what would you not do?
And the doctors say that weight loss doesn't happen with esophagus spasms? I don't get that. most of the spasms cant be that bad if they don't loss any weight before and after the diagnosis.
My weight have been swinging + and - 10 kg. I am on a eating frenzy when I am in a good period. I am like our ancestors. I am storing fat for the winter, or in my case for the bad periods.
But I would like to have a more normal diet. I know that yo yo dieting is not healthy.
So the next time you wake up with a leg cramp and you are waking everybody up in you're house hold, think of this: What if you had a leg cramp for 18 hours a day. What would you do???

Saturday, January 15, 2011

0 A little break..

This is a little break in my life. Finally, I got the papers that the government will pay for my medication..
That has been such a big burden. That I would have to pay 6000 kr a month for medication.
And after a hard week I got a little, or actually a big great news at the end of the week.

Its not easy trying to bee all that I can be, when I don't have the strength right know. I just have to get to the 24/1. And the doctor telling me that its not cancer, and that they got all of the cell changes.
On Tuesday I got  a medical certificate so I could try to get back to school.
But of course, I needed to get a leave from school spring of 2010 in 2010. They don't take into account that I was in a respirator, and even though my boyfriend handed in a medical certificate that I was very sick at the time. It doesn't count because they had to apply for it, not just hand in the certificate..
Dam bureaucracy...
But I don't care. If they don't contact me on Monday, I will just start in the fall.
Even though it would have been  good for me to start now.. well well thats life for you.. Nothing is ever easy.

Thursday, January 13, 2011

0 Squeezing the pain away..

This week and especially the last couple of day has been one esophagus cramp.
I am not going to say that I am strong, and able to do a lot when I am in this state.
No, I am lying on the couch in a fetal position with a big pillow between my arms.
I guess that is my little trick. that gets me through the worst esophagus cramps. I picked it up the last time I was in the hospital. It was sort of a emergency solution because I had forgotten my teddy bear at home.

Yes, I still go into the hospital with the hope of leaving the same day. I should start to get smarter, but I will never give up hope. That this time things will go my way. In that way, I am still a child.
So there I was, alone, and waiting for the pain to go away, so I grabbed my pillow and squeezed it.
And even today when I am in pain, it still helps to squeeze the crap out of something. The way I used to hold my teddy bear when I was a kid, scared or alone..

Tuesday, January 11, 2011

1 Trying Hard..

I am trying to get out of the house a little more, but because we don't have a car I don't want to travel to far.
In December we went to Karl Johan's street, and into a local mall, and of course the esophagus spasms had to appear.
So after that I am very scared of going to far without the possibility to get home within 10 min.

Yesterday I finally got to go to ikea and change our footstool that has been broken for almost a year.
And thats what great with ikea, they look at the receipt, than give you you're money back so you can get a new one, or just let it be. And even though it is way to big for our living room I still bought it. Where else am I going to have all of my candles?

I find that burning candles are very healing for my soul. I get this tranquility when I am around them. The easiest way to get a room to literally light up, is to put some fuel in the lighter and fire it up.
And I do try to do that on a every week basis. And now that my Christmas candlesticks are gone, It feels even colder and more sterile than normal.
I guess thats what I have been trying to do the last couple of days. To try and make my house into a home again after Christmas.
But by no means believe that everything is a smooth sailing. Because it is not. breaks every 10 min, and the break can last for hours, and sometimes until the next day.
Its not easy taking back you're life that has spun out of control. And put esophagus spasms in the mix, that are so random that you don't know how you will find the pattern, and control it..
How do you cope with stress without getting stressed out???

Sunday, January 9, 2011

0 Health system and medication

Before November 2010 I was more or less green, in other word didn't have much knowledge of the deeper part of health care. During the last year I have learned a lot, especially different medical challenges and how to solve them in a best way (of course from a doctors view).
By challenges I mean in this situation how to kill the pain, and of course by all mean how to try to cure the symptoms itself.
I don't know how many times I have fought for Alexandra to make the hospital believe her pain situation(s). For a doctor that says she shouldn't have pain she got after the last botox, and just to then think about sending her home, like the situation October 2010, it's a unbelievable and a surrealistic situation when I look back on it.
Just to mention all the withdrawal plan they put on her, because they were always was thinking it was just withdrawal symptoms. And of course all the withdrawal plans that never worked the way they thought, and as a result of a all the failed withdrawal plans, there is a countless number of times she has been screaming in severe esophagus spasm pain for many days just because nobody really believed her situation. Can you imagine? Just think about lying in a bed screaming of pain in a hospital?? The only place you are supposed to receive help, not get "tortured". All the different meanings from different doctors and nurses; one day a doctors says OK for painkiller, next day another one says: no way, and so it went. For a patient to experience this turbulence, is a really mental burden. Like you don't have enough problems before, you are sure to get mental issue too. For me me to just be a support for Alexandra in this chaos of decisions was a really challenge, and a huge mental burden for me too. And there is a huge different between the need for being pain free and the need for the medications itself. For Alexandra all it was and is about, is to be pain free, regardless what she need to take or have to do.
The best metaphor I could give to tell the extreme pain situation Alexandra was in, is the eyes of an animal that are being attacked by a predator. This metaphor is the same look Alexandra had right after the botox in October 2010, her eyes contained a look with pure fear that looked right through me. Quite shocking for me, and a image I never will forget.
And with all this situations I have learned the doctors, and of course some nurses how they think:

It is easier to give forgiveness than permission

What I mean with that, is they never give permission at first, but if they try something we all know won't work, it easier to give forgiveness when they realize it didn't work.
I have made two flowcharts that symbolize my point of view how doctors are thinking regarding painkilling medications, and how they should be thinking. ( click on the image to make them larger).This is of course not scientific made.

This first one is how I see/saw them thinking


And this second one is how I would like them to be thinking


I have learned a lot with both the painkiller itself and pain situation. And of course both should be threated seriously and with respect. Painkiller are by all mean nothing that should be used excessively, nor shall be underestimated, thus not be used too little based on the situation. A serious pain it's a living hell, and I could tell if I had the pain Alexandra have went through, I wouldn't worry the other side effects. Seriously when you are in pain you can only think about until next minute, maybe hour or at best to next day, what happens next month or so is unrealistic in a pain situation.

About the painkiller itself I have to my biggest surprise learned and recently read that all the non opioid medications inflicts much greater damage to the body than opioid medications. The greater risk (that we all know) with opioid is addiction, but non opioid has huge risk for liver damage.
Like from the Norwegian newspaper: (I guess there is other places you could find similar information regarding this risk)
Translated - original.

I have also read how a good treatment with stronger medications is a better long term solution for strong pain than use medications that metabolized in the liver.
This is quite ironic for me based on what I been through as a relative to Alexandra.

Saturday, January 8, 2011

0 Another Day......

Today is one of those day when you get to see life from the other side.
I went to visit my cousin who as been in a lot of pain, the last few years. She doesn't complain much, but you know she isn't doing well because she is very skinny, and looks pail. But after a lot of trail and error with medication, they now had to go for surgery.
And even though she has to live with the ileostomy, its so much better than having all that pain.

She was scared that we would go, and that we would mind that she was in a lot of pain.
I don't think its fun to look at someone I love, and see them in pain. But Its harder to be in that bed, because you think you have to look as if you are okay, so that people will stay. Because when you are in pain, its better to just hear people talking in the background, than totally silence.
And then you can concentrate on that background noise, so that the time goes faster until you get better...
So today My candle is burning for her to get better soon:

And now I have to remove all the Christmas decoration...buhu.....I am always going to love Christmas.
And its snowing so much outside, its looking so peaceful, and the way I loved Norwegian winter when I was a little girl. So I am going to get cozy under a blanket, with a cup of hot cocoa, fire up the candle lights and watch television.

Friday, January 7, 2011

0 OOOH what a day..

Today I got a new phone the HTC desire. And I am looking forward to that day when I don't want to trow it in the wall. I don't understand a dam shit, and writing a text is almost impossible.
I was not in the front of the queue when patience was given out, I probably snuck in the line, because I don't have the patience to wait....

But in a year or so I will absolutely like the phone, and in two-three years I will cry when I will have to buy a new one, because the desire stopped working. Phones just don't work that long anymore. And I hate learning a new phone, so I try to get it to last for as long as I can!
Thankfully my nokia 5800 was not a good one, so I will not cry for it. It has been trouble from day one.
But I will always remember my nokia 3210. The way the trash can moved when I deleted a text was revolutionizing. And that was it. So I go with my head held high, and hoping that HTC will give me the fuzzy feeling that nokia 3210 once did for me.
Maybe thats why phones don't work as long as they used to. We only used it for calling and texting. And the one thing I struggle the most with on my new phone, is exactly that.

Thursday, January 6, 2011

0 To be alive!

I feel so lonely sometimes, there are so few in the entire world who knows what I am going through.
I knew the day I came out of the respirator that i would be on the lonely side. All of those who cared for me were on the other side, They had this way of looking at each other, and then noding back. They had this mutual understanding, they had each other. And they knew how one another felt.

But not me. They were all so happy to see me alive, that they didn't see the real me. This lonely, scared girl.
I felt like there was no one who saw me, because nobody was looking, No one that heard me, because no one was listening. they were in this relive mode because I was going to live.
But I knew that when I was alive, somebody else wasn't. In that intensive care unit you had a 50-50 chance of making it. And for a long time, and even some times I still feel guilty. That i have to make the most of my life, because I am still here. But its not easy when I am still sick. Still feel like I am struggling to be the best version of myself. But how do I become that, when my body wont listen to me?

Tuesday, January 4, 2011

2 Why Esophagus Spasms occur and how they feel....

Some people around me wonder how it is to have esophagus spasms.
I know with 100% that it is coming when my voice becomes hoarse, scratchy or i loose it completely. And it is not funny when my voice starts acting up, and I am somewhere that I cant lie down, or take painkillers.
At first I thought that the botox had done it to me, because the first month my voice was hoarse the entire time. But then I started to see a pattern that every time I had a different voice, the esophagus spasms started within 20 min.
Its not always like this, I can get spasms without notice. I can be resting at home or at the mall. But as the textbook says, stress is the worst thing for us with spasms. And that is so true, even though its not easy to calm you're self down in every situation.
I guess that in time I do have to learn some stress reliving exercises.

And having the esophagus spasms is a little different each time. Its like this burning sensation, but also like you have cramps in the leg on top. Have you ever had a cramp in your muscles ? Well the esophagus spasms is pretty much like that, but you have the burning feeling in addition.
But it can also feel like this big lump in the throat,as if something is stuck. And sometimes the food is actually stuck. Then it helps drinking a lot of water. But this happen very rarely to me. Most of the time only because I don't chew the food good enough.

The bigger issue is that a cramp in the leg you patch up in matter of seconds, but esophagus spasms can last for hours. And sometimes it can feel like you have had a spasm for days. Its just one big spasm!
Can you imagine that, having a cramp in the leg for a couple of days? Or even months? Would you need painkillers, or do you think you are strong enough, so that you don't need any?

Monday, January 3, 2011

2 Whatever it takes..

I began to think about the people around me. They are there for me no matter what!
But what about me? Its like I am aloud to not think about anything but myself, but I want to be there.
When my boy is having a ruff day, yes he can have that too. its not easy being with someone as myself. You try being with someone with as many diseases as me!

I cant even try to imagine how it is, seeing the person you love in so much pain. But in the future, I have decided that I am always going to say that it will be okay. When someone comes to me with a problem I am going to sit quiet, sometimes respond, but try to know when i should shut up and just listen.
And when I have the strength I am going to try and help them in any way I can.

So in the future when I know the people around me have been though enough, I will try to be there as much as I can. And sometimes doing nothing, means everything. I just have to get out my feelers, depress mood swings and just be there!

Sunday, January 2, 2011

0 Your own way...

I know from reading others blog out there, that I am not the only one, who are given up by the doctors.
Its not easy trying to find your own way. some try conventional medicine, and others go the alternative way.
I will probably try a way in the middle. I believe in taking the best from both sides. Then you will get the best from both worlds.

Take migraine for example, I would try to go to acupuncture before I would take medication. Because the side effects from acupuncture is far less then the prescription stuff.
On the other side, if I broke my leg, I would go to the hospital. Because I don't think there are anyone who would go to acupuncture to fix their broken leg.

So i believe in Both worlds.I don't want to put one over the other. I do see that those who are given up by conventional medicine don't have any where else to turn then too alternative medicine.
But as long as there is a hope for me, I will keep on fighting for my right to get help from the doctors as well as from the alternative!

Saturday, January 1, 2011

2 school?

I have such big hopes for the new year. I want to go back to school, and to actually take an exam.
The last 2 years, I have read, and been to all the lectures, unless I was in the hospital.
I used to be able to read a week before an exam, and pass, but that was before all the medication that makes it hard to concentrate and to read.
Last time I was in the hospital, I actually wrote a paper, and I passed. And if I am not hospitalized when I have the exams, I know I can do this. I just have to find the fighter in me, and bring her out.

I am a dermatologist, but I had to give that up very early. How many finds their profession when they are 14? I did. But because of my health I couldn't continue. So at the age of 23 I had to give that up and find a new one.
I had to think about a profession where i could walk, stand and sit. I have to change position every hour because of my back. And as a teacher I can do some of my work at home, or in the weekends. So I can still have bad days without affecting my work. I also needed to have a job where I could work with people, So the teaching profession would be perfect for me.

Again I am sitting here. I have a few more diagnoses, and in some way I should probably give up and become disabled. But I don't want that. I wish for a "full" life. And we do spent one third of life on the job, so our work matters a hole lot.
Why Am I in this world, if its not to make a difference?