This is a place where you can post whatever you have on mind, like a forum. This might not be directly related to any of the post in the blog. So feel free to ask and/or share what you have on mind. This could also be technical question /suggestion related to the blog; if the blog doesn't show correct..
Hello Alexandra
ReplyDeleteI just wanted to say that youre blog is really good. keep strong.
I was just wandering how you cope with beeing so sick?
Is there anything the doctors can do for you?
xoxo natalie
thank you, glad you like my blog.
ReplyDeleteI don't cope with being sick at all, and I am pretty much in denial. I still wake up, hoping that it has all been a nightmare.
I guess the doctors could do something, but they are worried that I will get more infections if they operate on me.
And I do hope that the next botox will work, and that I will get at least 5 months to be normal.
hugs Alex
Hei
ReplyDeleteer dette samme sykdom som deg http://www.nordlys.no/nyheter/article1308328.ece?
håper du blir bedre snart og ikke gi opp
Sterk artikkel, sitter med tårer i øynene.
ReplyDeleteDet er ikke spiserørskramper , men GERD(Gastroesophageal reflux disease).
Var det jeg først ble operert for, og som førte til alle mine problemer. For meg som for Ørjan skulle refluksoperasjonen bli min redning, men førte til spiserørskramper og abscess i høyre lunge.
Er ikke alle som får deres lykkelig i alle sine dager etter operasjoner.
Men hvis sykehusene i Norge er litt mer oppmerksomme på sine pasienter, kan mange slippe unna med store komplikasjoner, og feil diagnostisert/behandlet!
klem Alex
Ja det er en sterk artikkel det som skjedde med deg og ørjan burde ikke skje.
ReplyDeletejeg håper du blir bedere og at noen kan hjelpe deg og bli frisk.
ørjan dro til usa og fikk hjelp du har ikke tenkt noe på det? og reise ditt?
Den artikkelen var sterk, fy søren.
ReplyDeleteJa har tenkt tanken, har snakket med legene og, for du kan søke om å få det dekket, men da må jeg bare få legene til å gi meg opp! det er ikke så lett... Men tror det bare er et tidsspørsmål. Et av målene mine å komme til en spesialklinikk for spiserørssykdommer !
ReplyDeleteklem
Hi Alexandra,
ReplyDeleteI have eosinophilic esophagitis and a narrowing (probably since 1998 and diagnosed in 2010) , low back surgery in 1973, upper back ski injury in 1972, and suffering with back problems since 1969. I only take oxycodone and found that it helps with all of the pain, but that sena or some laxative needs to be taken due to oxycodone. I just started taking pain medication in 2010, and was classified as disabled in 2010 as I could no longer stand the chronic pain. I take no other medication, and there is no euphoria with oxycodone though some people claim so, and what is wrong with euphoria. I started Transcendental Meditation in 1972 when I started college, and that was the best decision of my life. I married, and have two grown kids, one older, and one younger than you. Kristi puts up with the fact that I have not been working to make money for the past 7 years. I still find some bright spots in my day, sleep too much. I am the only meditator in my family. Try TM. We live in a two part universe, the relative world and the inner world of conciousness. Scott E. Wergin, Saint Paul, MN US
Hi Scott
ReplyDeleteI am so sorry that you are disbaled and that you have this illness. It sound like a crippling deaseas after what I have read about it.
I don't have any words that will comfort you right now, but if you want to talk to someone, or someone to just went you're problems to I am here :)
I am definitely going to try this meditation. I have to see if I can find some centers around me that are teaching this meditation :)
hugs Alex
Hei
ReplyDeleteLiker bloggen din godt, har du sett den http://www.dagbladet.no/2011/04/25/nyheter/sykdom/spiseproblemer/innenriks/16300600/
er ikke bare du som sliter med å få hjep,det er trist å lese om hvor mange som sliter med å få hjelp.
Håper det snart er din tur til å få hjelp!
hyggelig at du liker bloggen min, veldig trist historie, og desverre er det sånn at magesmerter altfor ofte blir sett på som psykisk, men da sier jeg: hvorfor utredder de ikke de psykiske problemene da, så man kan bli bedre? For det eneste noen vil er nettopp det.
ReplyDeleteJeg håper min tur snart kommer jeg og.
klem
Hi Alexandra, this is your brother-in-law from the US writing. I have read some of your blogs and have to say that I'm very disappointed in Norway's healthcare system. You have found a major black hole that no one seems to know how to handle. I almost get the impression that the whole chain of healthcare service providers are trying to avoid you. This shouldn't happen in a country that year after year is on the top-five list of "the world’s best healthcare systems". Living in USA for many years, I have to say that if you get treated here (=cash or insurance), you get top-notch treatment until they have tried absolutely everything... and then I mean EVERYTHING. You should fight the Norwegian system and have them finance your treatment here in the U.S., stop wasting your time on people that are counter-productive in your recovery.
ReplyDeleteWhen you feel that you have exhausted all options, you might want to consider putting the 'Go public'-card on the table! It is probably a tough choice to make, but maybe it's worth it -- unfortunately it usually helps. The public should be aware about these cracks in the system that the government and its healthcare workers are trying to "cover up".
Think about it, do some research on 'going public' and see what have worked for others in your situation and what kind of public channels they have used. Maybe get in touch with Oerjan, the person that was mentioned in an earlier posting here.
I'm 110% sure that there is a solution to your problems, you just have to find the right people to help you.
Unfortunately my wife and I can't help much with your situation in Norway, but if the Norwegian government allow you to get treatment here, we will of course be available as a resource to you.
K
Hi Kris
ReplyDeleteThank you so much for you're thoughts and recommendations.
I am a firm believer that the help I need I cant get in Norway.
I hope my settlement will be big enough so that I can finish school, and maybe get a small town house.
I know my treatment options in Norway are slim to nothing.
And in that I hope that this will enable me to get help abroad or the "right"doctor who will fight my cause- a deal breaker for a doctor who wants to help, just because he knows how to do it. cant anyone, who thinks they cam call (Elisabeth, Heidi, Døvre, Elise call me a day so we can discus this hole mess.
You are one of the few that I really trust in all of this.
Hugs A
Hey there
ReplyDeleteI'm just sending you a link to a Center for Esophageal & Gastric Surgery in Washington state:
http://uwmedicine.washington.edu/Patient-Care/Our-Services/Medical-Services/Esophageal-Gastric-Diseases/Pages/ArticleView.aspx?subId=75
Have you seen this before?
Kris
No I havent seen it before. And thanks, I will put it in my folder so that I can show it to thw right people when the time comes :)
ReplyDeletealex
why do not you try to push the doctors to operate you and like your brother-in-law said go to the news paper.
ReplyDeleteyou've been waiting a long time now, time to start pushing the doctors!!
I know. I have contacted The patient Ombudsman (http://www.pasientombudet.no/node/0/0/english) who is in the process of contacting a specialist, to find out my rights. we are trying to push so I can get help in a another country for lets face it. Norway doesn't have the expertise that they claim they have. From What I have read Germany and US is the countries with the largest expertise.
ReplyDeleteBut as anything else in this country fast means next year. And I am tired of fighting, but I cant give up my life, who can??