I haven't been active here at all which is just not good enough according to my own standards and intentions. And I'm hoping that it will soon change. Hopefully I'll be able to clear my mind by updating the blog by writing about what's happened since my last post. And I intend to do that as soon as I'm done with the municipality's work-testing course which is supposed to end at May 19th. Once I'm not to be tested every day to see if I can work, how long and with what I hope that I will get more energy and will be able to get back some sort of a life.
Maybe then I will not be as touchy about people telling me what to do and will be able to ignore stupid remarks, people looking at me like I'm a retard (pardon my lack of wording here but I can't find another word to use) and family memebers trying to dictate to me what I should or should not do.
I feel that my temper has been tested A LOT lately due to incompetent doctors, and words from people who don't think before they speak or people who just meddle into things that just aren't any of their business. The more I have to endure the harder it gets and I can't seem to keep my mouth shut nor can I restrain myself from saying STOP.
Lately I've been thinking a lot about how much the AMC affects my life - and always have (I just never new the name of the cause until two years ago) and why it is that my pointing out that something just wasn't right with my body had been disregarded by so many doctors as "you're just getting old" and how much my life could have been different had my AMC been diagnosed when I first started pointing out that my body wasn't normal. I know that that doesn't help me at all but still I can't stop wondering.
I guess it's because I'm in "no man's land" since it's costumary that AMC is diagnosed at birth and mine wasn't until I was 37 - and yet - despite of the diagnosis - I hardly have any information to go on when it comes to what to expect because it seems that I - and the other members of my family that have the diagnosis - have a type of AMC that the doctors have never seen before.
There's a lot to get out of my system and a lot to write about - which I will do soon - at a more decent time of day (or in this case night). I hope that whom ever reads my posts to come will bear with me if I some times need to let out some steam and if some posts may seem a bit negative but I feel that in order to tell my story I need to be honest and call a spade a spade. If I don't I wouldn't be telling MY story and I wouldn't be giving a truthfull picture of who I am - and for the most times I actually enjoy being me.
mandag den 9. maj 2011
mandag den 8. marts 2010
Personal aids
After having talkes about not being able to wash my back, not to mention reaching my feet and toes to wash and scrub, clean and cut them countless times, I'm surprised that noone has told med that there actually are aids that can help me with those problems - and then some (aids that is).
They've even invented a lotion-rubbing-thing. Funny that you have to find out yourself by slavishly going through the aid-database letter by letter - point by point; or rather it's tragic since the law order the municipalty to inform me about these things.
It annoys the crap out of me (pardon my french) that I have to find out about these things myself. Like it's not difficult enought having to accept ones limitations. And aids aren't the only thing you have to find out about yourself. I wonder why that is in a country like Denmark that's supposed to have such a great health-care system, that's paid for via the taxes.
The aids and the "not having to find out about everything by yourself" is not going to help me with any of the daily pains - at least not right now. But it just might in the long term.
Anyhow, I'll have to get a hold of the health/elder - department in the municipalty so they can send me an application form for a couple of things the will make my day quite a lot easier.
They've even invented a lotion-rubbing-thing. Funny that you have to find out yourself by slavishly going through the aid-database letter by letter - point by point; or rather it's tragic since the law order the municipalty to inform me about these things.
It annoys the crap out of me (pardon my french) that I have to find out about these things myself. Like it's not difficult enought having to accept ones limitations. And aids aren't the only thing you have to find out about yourself. I wonder why that is in a country like Denmark that's supposed to have such a great health-care system, that's paid for via the taxes.
The aids and the "not having to find out about everything by yourself" is not going to help me with any of the daily pains - at least not right now. But it just might in the long term.
Anyhow, I'll have to get a hold of the health/elder - department in the municipalty so they can send me an application form for a couple of things the will make my day quite a lot easier.
mandag den 22. februar 2010
Tired
Today I've had to take pain-killers. Which in it self isn't that bad. Naturally I would like to aviod it but since that's not a possibility in the winter time I'm living with it. I have aches and pains in my right elbow and shoulder. Both my hips hurt like crazy and it feels like someone is jamming an iron pipe into it. I actually get surprised when there's a part of my body that doesn't hurt as it usually does.
It's one of those things that make me stop and become attentive.
But back to the pills... They make me loose my appetite and when I eat I can't eat very much (in comparison to what I usually eat) before getting nauseous and getting these gagging feelings. It's not one of thoses I've eaten too much feeling like on christmas but a regular "I'm gonna lose my lunch if I even smell food"-feelings.
So far it's made me lose 10,5 kilo (which is about 23 lbs/pounds). Not that losing weight is a problem - I actually need it. But it's just not a good way to get rid of the extra pounds. Berween the nausea and my allergies I'm wondering if I get the vitamins, minerals and proteins I need. I guess time will tell.
My problem is that I get so so tired. After a couple of hours I can sleep for 2 - 3 hours if I let myself. After a couple of hours I could sleep again. But that's just not a way to live life so I try not to give in to the fatigue I try to go outside for a walk or something every day so I can build up some energy and can keep awake.
I feel best outdoors because of the fresh, cold and clear air. I keeps me fresh, I feel less nauseous. It's just not very practical feeling best outside when it's winter and the snow drifts are between 23 and 71 inches...
I guess that it's just one of thoses things that AMC brings to your life - side effects.!
It's one of those things that make me stop and become attentive.
But back to the pills... They make me loose my appetite and when I eat I can't eat very much (in comparison to what I usually eat) before getting nauseous and getting these gagging feelings. It's not one of thoses I've eaten too much feeling like on christmas but a regular "I'm gonna lose my lunch if I even smell food"-feelings.
So far it's made me lose 10,5 kilo (which is about 23 lbs/pounds). Not that losing weight is a problem - I actually need it. But it's just not a good way to get rid of the extra pounds. Berween the nausea and my allergies I'm wondering if I get the vitamins, minerals and proteins I need. I guess time will tell.
My problem is that I get so so tired. After a couple of hours I can sleep for 2 - 3 hours if I let myself. After a couple of hours I could sleep again. But that's just not a way to live life so I try not to give in to the fatigue I try to go outside for a walk or something every day so I can build up some energy and can keep awake.
I feel best outdoors because of the fresh, cold and clear air. I keeps me fresh, I feel less nauseous. It's just not very practical feeling best outside when it's winter and the snow drifts are between 23 and 71 inches...
I guess that it's just one of thoses things that AMC brings to your life - side effects.!
fredag den 19. februar 2010
Welcome
This blog will primarily be used to blog about my life with Arthrogryposis Multiplex Congenita.
I've only just been diagnozed recently, at the age of 37, so I'm in a different situation than many others with the diagnosis in the sence that the usual precaution one takes in order to not deteriorate I haven't been able to take. It's put me in an "unknown" situation for both the doctors and I.
I still (after about six month of waiting) haven't been tested genetically to figure out which kind of AMC I have. But my hope is that I will be tested within the next month or so.
Instead of making one very long post about all of my problems I will tell about as I write posts and try to remember that no one - other than me - knows my physical situation.
I'm not exactly the one being worst of but I'm sure not the best either. Mostly due to other handicaps and the fact that I had my diagnosis late in life. It suck but why feel down about somethin you can't do anything about or for that matter change. I maintain a positive outlook on life eventhough my situation has gotten quite a bit worse the last couple of years.
Not many Danes have an AMC diagnosis, which is why my blog is in English.
Some of the things you'll be able to read on the blog might sound strange but I'm sure that will be due to the differences between the Danish health care system and eg. the American.
Feel free to comment on my posts, give advice if you've been in a simular situation or have something else on your mind (naturally spam posts will be deleted) or just want to let me know that you follow my blog.
Helle Karina
I've only just been diagnozed recently, at the age of 37, so I'm in a different situation than many others with the diagnosis in the sence that the usual precaution one takes in order to not deteriorate I haven't been able to take. It's put me in an "unknown" situation for both the doctors and I.
I still (after about six month of waiting) haven't been tested genetically to figure out which kind of AMC I have. But my hope is that I will be tested within the next month or so.
Instead of making one very long post about all of my problems I will tell about as I write posts and try to remember that no one - other than me - knows my physical situation.
I'm not exactly the one being worst of but I'm sure not the best either. Mostly due to other handicaps and the fact that I had my diagnosis late in life. It suck but why feel down about somethin you can't do anything about or for that matter change. I maintain a positive outlook on life eventhough my situation has gotten quite a bit worse the last couple of years.
Not many Danes have an AMC diagnosis, which is why my blog is in English.
Some of the things you'll be able to read on the blog might sound strange but I'm sure that will be due to the differences between the Danish health care system and eg. the American.
Feel free to comment on my posts, give advice if you've been in a simular situation or have something else on your mind (naturally spam posts will be deleted) or just want to let me know that you follow my blog.
Helle Karina
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