2 happy fairy to the Norwegian female Thor!

Yesterday, I was so fortunate that I found a doctor that sees my problem as a physiological, and not emotional.
I have no problem with it being a mental issue, what I resented is that they did so with no examination to back up their theory, with it being a mental one.
But thats not what todays story is all about.
No my story today has to do with my doctor sending me to a regional hospital for treatment of my esophagus spasms, but I am not even in the pool of those who need treatment within a giving date, however I could expect to be treated before June 2012!

How sick is that? If I don't need quick treatment, then who does?? Does it really come down to how good requisition you're doctor writes? Or if you know the right people?This is messed up. We should have a system where all health care professionals could get into our medical journal so they can see who really needs it, and not how much you're doctor exaggerate and makes a few embellishing remarks. Then they could get a clear picture of the medical problem and history!

I am mad, so mad that I think I am starting to grow horns out of my forehead. I am sick of those who shout out the loudest get treated first. I hate myself for beginning to manipulate doctors, because thats the only way too get help. Why cant we trust in the fact that no one wants to be sick, exception MBPS, self harming, etc, but this are also illnesses, and I don't think they want to be sick anymore then the rest.
Either you are sick, or you aren't, thats how easy it should be. and it should never be about doubting the patient, trust me we doubt our-selfs all the time, why do you doctors think that so many of us are on anti-depressants??

2 0-1 for ME

If I have ever said there there are more people in the health care system who cares more about power, money, basically their own career more then the patients..
I have to many times told them that what I really mean of them, and if I don't like you, you would now it. But thats a part of being sick, you're filter is gone, you have become this essence in a shall that is filled with "cancerous" cells..

0 Esophagus spasms speaks Alex language

I have been to my doctor today (pain clinic), and I am confused... The last 4 months have been about me taking morphine based supplements, and nothing about my real problem.
We did write a angry but fair letter last week, were we stated what we think needs to be done. My last gastro doctor has written to things in my medical journal that he did not want to treat me and said that my treatment was completed.. I thought what the f&/%k??? How can they say that? my spasms are just as real now as they were 12 months ago, or 24 for that matter.

0 My Doctor, Old Doctor, New Doctor, Happy Me????

I am so fed up with my family doctor. She wrote me the wrong prescription, and thats not ok when it is medicine that I really need. But it doesn't stop there. I called her up but she is on vacation so I had to call back on Monday, and then they could give her a note. why couldn't they do that when I called so she would get it right away when she got to the office. But the secretary was so rude to me, so I was in shock.
Well then I looked at my new appointment, and don't you think that that she gave me a date in August in stead of June!
So now I have changed my  family doctor. I need a doctor that is healthy enough to fight for me, not the other way around. I need a doctor who is present at her work, and not having so much personal problems so that she isn't in her past, when she needs to be in present.

This is the new Doctor I am getting Friday, and I am exited, because a new doctor is a new pair of eyes that maybe sees this illness in a another light.
I called today. I was on fight mode, as I am used to fight for a appointment a month from now.
Anyways.. I said I had esophagus spasms, and the secretary said that.. Then you need a appointment soon, So can you come on Friday at 9:30 am??
I was in shock.. I usually have to cry,and make a seen in order to get in that day, or I have to wait a month..
This is new for me... And in the future.. I don't have to be scared when I call my doctor. I like it.
Lets see how I feel after Friday ;)

0 Esophagus Spasms

I have now had this disease for a year and a half, and if you look at some diseases this is like in its baby stage.
One the other hand, when you have had some deadly diseases after a year you are so tired.
And now in my second year, I am tired of still not being able to eat normal food, and  lead a normal life.
But someday is better than no day
And I am hoping that soon this will be a fainted memory of a stressful time that has shown me what life is all about: Love, Family and Friends.

1 Esophagus spasms...

Why do life has do be so hard? Why is pain so consuming? Why cant life be the perfect ever after?
I am so tired of having pain, then I am taking Ketogan, then its a little better, so then I eat a little bit, then I am in pain again, and so it goes, round and round. A very time consuming affair, that I Am tired of repeating.
To be sick, and to nor trust the health system is so scaring, because you should be able to rely on them, not be frightened!
What is esophagus spasms?? Its a shitty disease, that takes away you're confidence, it isolates you, drain you're energy and all in all makes you belive is not worth living. But it doesn't kill you, so it keeps throwing you to the lions over and over and over until you cant stand on you're feet. But no cure- So what to do next??

3 Be me tomorrow

Isn't that what all of us sick people want? A better tomorrow, a brighter future, and in my case: A Healthy body.
But instead of being healthy you can dream of a Career, House, Traveling, Pet, Spouse, Children, Fame Or winning a championship. The one thing that we all want:  Our dream.
The one thing everyone can relate to is that we all are fighting for something we dream of.
Or in my case: I day dream about a lot ( Maybe because I can never remember my night dream).
And I wanna be in on the action when I am swept away by a vampire that most have me, he turns me, and I will never be in pain again..

I know its a silly dream, but I think we all sometime in our life's have wanted to be someone else.
Anyway, I don't know how many times I have been on this couch dreaming of a better tomorrow. Where I can travel and see the world again, go on a ski trip and a bicycle trip in the Forrest.
But the one thing I want more than anything is to sit at our kitchen table with my boyfriend and our children, and where I am able to eat with them, without the fear of Esophagus spasms.


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0 Keeping my Psyche

Its nice to have my psychiatric nurse once a week. I get to talk about my problems to one who doesn't have an emotional attachment to me.
There are things that you don't want to talk to family, friends or boyfriend.
Its not easy to get safely through the maze thats Norway's health care system. And Ellen helps me a lot.

She is also there to help me come to terms with what I have been trough, and to help me realize what my future might be.
The one thing that is not so good is that you have to know that this service exists, and sought it out. It should be something that was offered to everyone who will be or has been sick for a long time, and gone trough life changing surgeries, and need help with out their new life!

Of course Ellen asked a lot of questions the first couple of times, because she didn't know anything about esophagus spasms, but she was refreshingly honest about it, and didn't try to seem like she knew more than she did.

3 Alone

When you are sick the hardest part is loneliness.You think that no one understands and that you basically are left alone to die like a sick animal. But then you hear that there is a place you can turn to for help and guidance.

And when you reach out to this organization for help, because their motto is: We are here for you. And all you get is a small e-mail with the basic of esophageal spasms.

Nothing like: we will help you, and we will have a meeting for people in you're situation. Now you don't have to be scared anymore because we are here for you! They do cover digestive disses, but they're main focus in Crohn's  and Ulcerative colitis.What about the rest of us? We need help too!
Now I will have to figure out everything on my own. And thats not easy when you have 6 ½ bad days.

0 Bite me own ass...

After a weekend with walks, coffee date, brunch and birthday, I am now paying for it. big times.
I have been hooked up to the tens for 24 hours now, and several ketogan later, I am still in horrible shape.
I do forget sometimes that I am sick. I don't forget it, I try to deny that this is happening to me.
Nobody things that what we read in the papers can happen to you. You feel with those people, and close the papers. Out of sight, out of mind. And you only starts to think about it when you are into you're knees in problems. And then you don't have the strength to help any one else.
I just have to bow to those people who helps others, just because it is their nature, and heart to help!



«You shall never bother others, You shall be both fair and kind. And whatever else you do, I shall not mind.» The Cardamon law

4 I walked today

I actually managed to take a walk today ☺
And I feel like I am taking this pain school already. I am learning how to deal with esophagus spasms.
I walked for a couple of kilometer, and came to the nearby mall, when my spasms occurred.
I had of course forgotten water at home, but this mall has free cold water from dispensers, so I ran inside and tried the 1 home remedy: Cold water, and a lot of it!
It didn't work, so I ran into a toilet a took ketogan suppository. The only problem is that this pill has a very laxative effect. So I sat there outside the toilets on a bench and tried to keep it in for 20 min until the pills had tenderized my bowel, and entire intestines poured out in 3 seconds.
Know I was ready to walk home, and oh my how it was beautiful:

It can be seen as an extreme sport taking Ketogan, But hey, what can you do? I enjoyed the view, and realized that I am learning more everyday, and maybe my doctor was right that I can be better in a few years. The more I trial by error, the more I learn ways to deal with this disease, and maybe one day I will get a little more dignity into my life!

12 Cant breath..

Today is the day that I have realized that I have to live with esophagus spasms, and probably for the rest of my life.
And I cant breath. I never thought that I would be this scared, and this heartbroken.
I never thought it would last, I thought the doctors would come up with something amazing, like they always do in a Hollywood movie. Its insane, crazy, and the patient is most likely going to die, but the patient never do. In real life they never do come up with anything like that!
My life has been damage, and maybe lost, just because doctors did me wrong.
And when they realized it they tried to blame each other, instead of helping me.
When a person wants to be a doctor, is that to save life's, or to save them selfs?

7 Multi use...

I bought this LUNS writing/magnetic board a month ago. I had done a lot of research, but I couldn't really find anyone that I liked. But the Luns on Ikea was everything I wanted. It was magnetic and write able. And the price $14.99. I did find one that could only be written on, and it retailed for $53.54!

Instead of keys I hang my Shoehorn on the hook for easy access.

But I didn't like the color, so I painted it white. Then I painted the hooks underneath brown. The final thing I wanted was somewhere to hang cards or pictures of the month. I wanted to hang up pictures of those who have birthday so I wont forget. Like I have told before, I forget everything, so this board is going to jog my memory.
After I had painted it I screwed two screws on each side of the frame, then painted the screws and wrapped a steel wire on the screws and then I had a place to hang my pictures.

I am not done. When you have a magnetic board you need magnets. And I didn't want boring ones. So I made them myself. I used silk-flowers,steel wire,quick glue,beads,ribbons, stickers,crochet flower, decoupage stickers,magnetic sheets and borders. Everything can be bought at Panduro Hobby, except the silk flowers witch was bought in a home decoration store. It is suppose to be used to decorate tables!

This blue silk beaded rose magnet

Sticker magnets and crochet flower beaded magnet

Decoupage sticker magnet with borders in the bottom

Decoupage sticker magnet with borders in the bottom

I love Vebjørn Sand and Marianne Aulies paintings. They have made more affordable paintings that the everyday man can buy. But I didn't want to pay 200$. So when the sale brochure from Bohus came in the mail, I cut out the pictures and glued them on a magnetic sheet.

Vebjørn Sand and Marianne Aulie

I like being creative. If I cant use my body I want to use my brain. So besides books, this is my way to keep myself sain. And if I am damned with a life filled with esophagus spasms, then I am going to have something pretty to look at.

0 School and Esophagus Spasms!

I did go to school yesterday, and it felt good to be "back". The only problem is that half way into the lecture I got really bad esophagus spasms. I felt trapped, because there were people all around me, so I couldn't get out.
I tried every remedy I couldn't come up with. I drank half a liter of lemonade. I had a meditation session by myself for the class!!

The good thing is that I have become an adult over the last couple of years. I don't care what my class mates think of me, and I don't care that I am disabled anymore. Before I was so uncomfortable when I sat down on my "special" chair in class. But if I need a bed in class to be able to finish, well that is what I am going to do.
Any way there I was in class, me and my esophagus spasms. I couldn't drop my pants a push up a ketogan suppository in the middle of class. I am not THAT comfortable in class either.

But I will not give up school it means to much to me. Its part of my dream, and I am going to fight for that dream, even if it take me 20 years to get my degree! Until that I am here, on my couch, reading books about yoga, self-help and Dan Brown!

8 My Doctor

Today I was at my family doctor, and I must say I got a reality check, big time. He told me that : You know this is not going away. You are going to live with this. But it is going to get better, but it is going to take a lot of time. And in a few years you are going to look back at this time and see that you are moving forward.
But you shouldn't have to much hope in medication or different procedures out there, because a lot of them won't  help you.

I think he was refreshingly honest with me, most doctor walk around the bush to much. Yes the stone cold truth can hurt, but it can also build you up, and when you know what to fight against, its easier to pull up you're sleeves and go get you're life back.
This is a lot of big words, and right now I am so sad that I feel that the system is giving me up, so I am going to cry this weekend, and call every doctor I can think of, on Monday. I am going to nag my way back to get the help I know I deserve.

2 Couch day

Today my health is not to good. I guess I am paying for doing to much this weekend.
I am damned if I do, and damned if I don't. So what do I do ?
Lock myself in the rest of my life? To do nothing so I will keep the pain at a minimum?
What about the rest of the time when esophagus spasms starts without notice?
I am so scared of not having the life I dreamt of. I have changed carrier twice, and I don't know if I have it in me to change again, or the stamina to get another education!!

2 Did it again...

I have been using my Sunday with improving the esophageal spasms site. And finally, it looked really good. And then poof.. Again. everything was gone. But know everything is going into word before out on the blog.
I have finally learned my lesson... buuuuuhuuuu...

0 Sleeping my day away.

This is what is hard with having esophagus spasms. The evening and nights are much worse then the morning/day. So what do you do when you have been up all night?
You fall a sleep in the morning, and sleep all day. But how do I change that? I cant live without sleep. And some days I haven't slept for 36 hours.

0 OMG....

I have used like 6 hours to try and improve the: this is esophagus spasms, and I was finished.
Poof and then the hole text was gone. I guess that means I have to start over again.
That is me in a nut shell.

3 Lyrica®

I wanted to share a little of my experience with Lyrica, witch is used for treating neuropathic pain and a anticonvulsant drug . The active substance in Lyrica is Pregabalin.
In my place they hope that it will take the esophagus spasms.

The first two weeks I felt like I was sober trapped in a insanely drunk body. When I was talking nice and understandably in my head, but outside, to the rest of the world, I think they though that the hospital was giving me heroin or something. And I couldn't have walked on a strait line to save my life! My mom actually had to pick up my old winter shoes, because I couldn't manage to walk with a little heel. And for those of you that don't know me, I am the queen of heels..

But once I got through those first weeks, It was a little smoother sailing. But it took about 3 weeks before the big side effects wore of. I guess Lyrica is like a lot drugs against depression. The side effects comes first and the effect first after a couple of weeks.
I am not sure how effective they are, but if I didn't take them any more, maybe I would have felt it then.
I had the same thought about Neurontin last year, but when I stopped taking them for 2 weeks, my lung scar and  the inside of my chest started to really hurt.

So of you and you're doctor decides that Lyrica is the drug for you, clear the schedule for 2 weeks, because its gonna feel like a long binge drinking trip!