Archiv der Kategorie: My Story

Everything about my story and my case

The hut 2

Talking to God is sometimes really hard. Once I heard a question if God listens to all prayers people have. The answer was yes, but He says no for some of them… Weiterlesen

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Time

I like the saying which expresses how time can be different: A minute which you spend in front of the toilet door is much longer than the minute which you spent already behind sitting on the toilet :-) Weiterlesen

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The hut

Some time ago I was recommended to read a book called The hut. I like this book very much because it showed a lot to me. I have already read it many times and I tried to find out what my own hut is. I could not have found the answer and there were whiles in which I felt like the God up there was just beating his head while saying that this girl must be for sure the slowest to understand in the world. Suddenly there is an answer and I know what my hut is. And I have to say that it is the hardest thing which I have ever gone through because it is not my illness as I thought. Weiterlesen

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Going up again 2

What really helps me every day is the people around me, especially when they are in a good mood, work routine, exercising and walks which I have been doing as often as I can. Walking calms me down and while walking it seems like nothing changed in my life. I am fully aware of the fact I cannot do things as I used them to do, so everything is different, but I am trying not to concentrate on what I have lost Weiterlesen

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Going up again

When I was down in the dumps, feeling really depressed, I would say the worst thing about it was the fact I was going down as I could not see where it could end. Now, I think I have already been going up finally. It is painful, so much painful that I guess nobody can imagine. I have been struggling with so many problems, trying just to ignore them and go up and up… Weiterlesen

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The sixth week and results

I got fed up of waiting for the results and everything. It seemed to be like a game in which me, as one side, and the doctors as the other side were waiting what the other side would do. I have to admit that I was the one who blew a fuse and I decided to sign a revers and go home. Before I left, one of the doctors, the head one came to me and we had a short talk. I only got to know that my stage is incurable (I had already known that). Weiterlesen

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The fifth week in the hospital

A new week and new check-ups which should show how the pathways between my legs and head are damaged. These check-ups will measure the evoked potentials which are the electrical signals generated by the nervous system in response to sensory stimuli. The first one would be somatosensory evoked potentials or just SEPs. They consist of a series of waves that reflect sequential activation of neural structures along the somatosensory pathways. The stimulation in my case was done at the tibial nerve (it is on the inner part of the calf. The result of this is important because of intraoperative monitoring during the spinal cord operation. The check-up was done by a really great doctor who was very kind to me and explain the whole procedure to me, so I was very calm and without fear. The result of it was not good. The signals coming from my legs are so low that they are not suitable for intraoperative monitoring. Weiterlesen

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The fourth week in hospital

New week started and there is still only little news which says rather nothing to me and it does not solve my situation at all. However, I am not the only one in such a situation. There are many women who are really very similar – just waiting to be said what it going to happen. Most of them suffer of a kind of cancer connected with their heads or neurological systems. The system here is focused on a patient, but I would say in a wrong way as it does not make a doctor to be responsible for a patient´s stage. They mostly let patients to make decision about themselves without explaining in detail to them what their situation is about. I think patients do not have enough knowledge to be able to make the right decision without having information from the doctor. Weiterlesen

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Third week in hospital

I was finally transferred to the other hospital where I should have been operated. As I was leaving, my surgeon told me the operation would be at the end of next week. The new hospital did not look very good – I really did not like the rooms and also the people do not look very friendly, so during the enter check-up I was so nervous that they could hear my heart beating as they were measuring my pressure. Weiterlesen

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The second week in hospital

The second week started and I have still been waiting for some news. I have tried to talk to the doctors here, but they only told me that I must be informed by my surgeon who is not very often here. Weiterlesen

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