How I cope with my rheumatic disease? It was and it is still long way to work on so many stages. When I have heard for the first time I might have rheumatic disease, I was in complete shock. I was only about 33 years old, I was freshly new mum. That was something I would imagine if I am at least 70 years old or so. Sorry for that. But that was my image. When the first shock came over, I felt actually relief. A lot of things started to make sense. And also the knowledge about the general things helped me. However what I didn't realize that I wasn't ready for accepting it. Another problem was amount of the medication and learning what is the correct dosage. I had to learn that having diagnose and medication do not mean I am out of the pain and other problems or complications. When I went to the pharmacy for the second set of my medications I got frustrated by realizing this is supposed to be for the rest of my life unless they will come up with some miracle medication. Which is highly impossible. This is not the type of the disease what would be people interested.
I have still problem with finding the correct and exact diagnose. I am still having more general name, which is developing later into either lupus or scleroderma. I am probably having scleroderma with lupus signatures. This is quite rare and make it quite difficult for doctors. The symptoms are changing from person to person, but when I am not able even to fit in the general symptoms for any of those diagnoses that makes me frustrated even more. I feel that I am not good enough even for being sick. I failed everywhere in my life. When I got Supraventricular tachycardia diagnose I was almost weirdly happy about it. Because that was except my thyroid the only clear diagnose. Of course I was happy to know what is wrong and that it is possible to solve, but I could say what is exactly wrong with me.
Last time I was fighting with incredible back pain, while nothing was working and doctor didn't know how to help me. The worse the attitude. I was left alone. It was not life-threatening so why to worry about. The only thing I wanted to do was to jump from the window. Something I would never do in clear senses. And I hope I will never do it. My left wrist constantly hurts. I am starting to be used to it, but sometimes I cannot bend the wrist and the fingers are sore that I cannot tight my daughter shoes or to make her ponytail. Then I feel really miserable why me, why I cannot solve it.
Right now I am in a stage, that I am overpowered by other things. I am loosing motivation to fight.
People are sometimes talking about how lupus and scleroderma are serious diseases. And they truly are. Many people suffer for serious complications. I am still quite lucky in this sense. Or not. I am not trying to look what could happen, but to be present at the moment. As the tree has many branches, things can develop any direction.
Have a nice day!!
I have still problem with finding the correct and exact diagnose. I am still having more general name, which is developing later into either lupus or scleroderma. I am probably having scleroderma with lupus signatures. This is quite rare and make it quite difficult for doctors. The symptoms are changing from person to person, but when I am not able even to fit in the general symptoms for any of those diagnoses that makes me frustrated even more. I feel that I am not good enough even for being sick. I failed everywhere in my life. When I got Supraventricular tachycardia diagnose I was almost weirdly happy about it. Because that was except my thyroid the only clear diagnose. Of course I was happy to know what is wrong and that it is possible to solve, but I could say what is exactly wrong with me.
Last time I was fighting with incredible back pain, while nothing was working and doctor didn't know how to help me. The worse the attitude. I was left alone. It was not life-threatening so why to worry about. The only thing I wanted to do was to jump from the window. Something I would never do in clear senses. And I hope I will never do it. My left wrist constantly hurts. I am starting to be used to it, but sometimes I cannot bend the wrist and the fingers are sore that I cannot tight my daughter shoes or to make her ponytail. Then I feel really miserable why me, why I cannot solve it.
Right now I am in a stage, that I am overpowered by other things. I am loosing motivation to fight.
People are sometimes talking about how lupus and scleroderma are serious diseases. And they truly are. Many people suffer for serious complications. I am still quite lucky in this sense. Or not. I am not trying to look what could happen, but to be present at the moment. As the tree has many branches, things can develop any direction.
Have a nice day!!
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