My Story

In December 2008, I got really sick

I had an infection in my kidneys, but not for the first time, however, it had never before been so bad.
The doctor would have me hospitalized, but unfortunately I am enormously stubborn, and I refused to 'destroy my son’s Christmas’ he was 8 at the time. I was not aware that I actually almost destroyed his life instead, as I was playing with his mother's life. .. Through all holidays I continued to 'rest for a minute’. As in: I threw myself down on the floor all the time to rest. Or it certainly was what I fancied myself into.
I was so weak that I did not even had the energy to go to the nearest chair or bed, so the floor was easier (and closer)... I just needed to rest a bit ... my stomach cramped and hurt really bad, but if someone asked me, then I was okay, and just needed to rest for a moment. What I did not realize was that I was not resting, not at all. I was going in and out of consciousness.
But somehow I got through December .. I was still sick in January, and even more in February when I finally met my match in a doctor (+ my wonderful husband had had enough and reached his limit with me) So they did not let me say no and I was hospitalized this time ...At the hospital the doctors told me that I survived on pure willpower (since I did not get medicine) ... I should not have survived.. But I did, and it is a gift, it is a chance for me, to make an extra effort, especially by raising awareness, awareness, and awareness.

So here I am ... with Addison's disease. Living in Denmark, where there are only about 250 people who have it. = The Danish doctors do not know a whole lot about it. I do have a really good doctor now; he is originally from Poland...  My first doctor overdosed me, so I went from 50 kg to 98 kg in 8 months (the picture shows a before and now-picture .. especially skin color is due to my illness, see I am quite tanned (yellow) now) .. I do not eat much food because of my facial pain problem, so it is not food that made me so big. It is the medicine.. But it keeps me alive, so it is just a side issue (although it is difficult to accept)
My body is under constant stress, because I always have pain with my face ...
I get morphine, muscle relaxant medicine, I get tranquilizers and so on. And I have gotten all that for many years, most of it all the way back to the tooth extraction as happened in 1996.

Everyday life has been a struggle. I cannot leave the house anymore. I cannot speak and talk very much because of my jaw. I cannot deal with wind, light, sounds, etc. cause of my face. I do not talk on the phone as it bothers my jaw. I am hypersensitive to the sounds. And I've got muscular dystrophy in my arms and legs.
I am very big on my stomach, but I have tiny arms and legs, and I have problems with being able to walk and stand.
I've got all teeth pulled during 2013 in an attempt to minimize my face pain (another story, another time) ... It's like it all falls together..
I have the best husband on this planet, but I can feel that he is tired (he never complains), but physically tired, and we are not getting younger, but he does everything at home, and never complain. It's so hard not being able to do anything to help him. I would give my right arm for just being able to get to cook again ... and I really try.. I try and fight it ... but at the moment I stand completely in Stillwater and await one more surgery in my face / jaw due to the teeth issues, I am nowhere done with that yet. So within a month or two then I have put some screws in my jaw (ouch)
I felt very alone with my Addison. Often I have had a tendency to blame myself for making it all up in my head, sometimes I hoped that it was mentally and just something I thought.

But today I joined a group on Face book, for people with Addison disease, made me cry. It was a great eye opener.. Because today I realized, that I am not different than any of the others with Addison. It's not something my imagination, I cannot help it and it really is happening to my body.

I do not know what else to write. But would like to answer questions if I can ...
I write in both Danish and English.. My English is pretty good, but I'm not good with medical terms in English, so it will have to be spelled out for me to understand it, but I promise to do my best.