You will see her blogs here on my side, as much and many as she wants.
I will no longer call them Guest Blogs, but instead they will be called Lines Blogs.
Of course anyone with Addison disease is very welcome to write a guest blog / their story to my side. The more we are to tell, the more information we can share, the better the people around us, can help us to tackle this disease. The more we are, the more information we can share.
Currently, I am not active in blogging myself. I have unfortunately become ill (as we can get very ill from stress, with this disease)
I have run into some problems that includes lack of understanding of the disease and especially understanding the seriousness of it, but I promise that I will come back blogging as soon as possible.
So welcome to Lines second blog. I took the honor of calling it Line’s update.
It’s been two months since I got the message, that I have Addison's disease and I still have a really hard time accepting, that I have to live with this disease, for the rest of my life. I have been in contact, with other patients in both Denmark and Sweden and they feel the same way, it is not an easy thing to accept, that you have a life threatening disease, especially when the disease is as invisible, as this one is. Our friends and family members can’t see that we are sick, that is why there are moments, where they do not understand, that we can’t participate in something that has to be done or be a part of an engagement, because of the lack of energy and that makes it even harder for ourselves to accept it.
I myself feel, that a lot has happened in the last two months, I’ve gained weight, my joy of food has returned and I look a lot better than before, but I am still very easily tired and drained of energy and I still get sick a lot and struck by infections, so I very often have to increase my number of pills, I have to take pr. day so that I can function somewhat normal and that off course makes me a little sad. I know it’s going to take me a long time, before I can live a ”Normal” life, because I was so sick and tapped from energy, that it will take a long time to recuperate, but it is just not fun, living your life on the sidelines, while you have small children, you wish you could spend more time with.
On Saturday February 28 I am going to the hospital for an MRI scan of my brain, to find out why it does not send the signal that my adrenal glands need to produce Hydrocortison. I have been told, that the problem is in both my brain and my adrenal glands, so I am both secondary and primary Addison and that is apparently extremely rare, but that is just typical of me, leave it to me to get something rare.
It is good to know, that there are starting to be some kind of an idea of what is wrong with me, but I am though a little afraid of the possibility of other autoimmune diseases, because I have been told, that others may follow or already be, but I hope, that they can be treated the same as Addison, because then I can deal with it. At the moment I have problems with poor immune system, a low salt balance and vitamin deficiency, but that can be fixed.
At home everything is going as it did before, I was diagnosed, I try to participate as much as I can, in taking care of the children and some of the housework now and again, but I must admit, that there is still a long ways to go, before I’m up to full speed again and the prospect of a somewhat normal life and that feeling, gives my days, where I am very depressed over the fact that I can’t join in, as much as I which I could, it helps a little when my family tells me, that they understand the reasons why.
On a little more important note, I’ve experienced, how important it is, to have a doctor, that knows as much as possible about the disease as he/she can, or it can lead to problems when you seek treatment. I was going in for a checkup at the hospital in Sweden and in came a doctor, that said to me, that they couldn’t say for sure, that it was Addison Disease, because of the lack of hyper pigmentation in my face, so I them had to explain to her, that it is not all patients, that has that symptom, that on fact very few do and it made me somewhat angry, that a doctor could come in and try to re-diagnose me, without knowing anything about the disease beforehand.
So my advice for this time will be. Make sure, to find a doctor who knows as much about Addison disease as possible and that he or she makes you feel safe, and that whatever you say are taking seriously, because that makes all the difference.
Till next time, take care of yourselves and each other and I hope you all avoid any Addison crisis
Cyberhugs to Y’all by Line
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