5 – I need a hobby
April 7, 2012
Yesterday they took me to the CF-Hospital by helicopter. Ich look out of the window a little. If I had felt better it would have been a great experience.
In the hospital I was taken to the same unit as usual, so I already knew the nurses and doctors. I was high because of all the strong meds and I was lying in bed all noon, not sure if I was awake or sleeping. Maybe something between.
Later they did a MRI of the whole spine, from the neck down to the tail bone. They put you in a narrow tube. In there it’s very loud. With the help of magnets they can see your bones without using dangerous x-rays.
After the test my favorite doctor visited me and we thought, that I would feel better soon. I even hoped that I could go home soon. I was listening to an audio book till 4am, optimistic that everything will be fine soon but sleepless because of the pain. In the evening I had refused to take my painkillers because I didn’t Want to be high anymore.
Today in the morning the doctor showed up and told me, that they saw an infection in the spine, that the infection will make the bones very weak and porously and they could already see on the picture, that the bone changed a lot. I was frightened first. She explained, that they will do a bone punction with a very long needle that they will sting right into my spine to take out a biopsy so they can test, what bacteria causes the infection and which antibiotics would help. This and some other tests will take place on Tuesday, because now it’s Easter which is a public holiday. Almost nobody works on Friday, Saturday, Sunday and Monday. A second doctor showed up. They told me that I’m not allowed to move anymore. Most of my 1000 questions havent been answered but they told me, that the worst thing, that could happen was, that i might need a wheelchair for the rest of my life. What scared me even more. Also the thought of more long weeks in bed frustrated me.
It also was, that we all knew that I can’t get new lungs, as long as the spine is not ok. They also told me, that the pain will be there for a long time.
I still remember when it started. It was January, 11th. Two days before my birthday. Luis was in Germany. I wish, the pain would not have shown up at that time. I wanted to enjoy the time with him. Very often I think about what we would have done, what trips we would have made if I had not been in hospital all the time.
When they told me, that I have new spine- fractures i was more mad than surprised. I have had more than 10 broken vertebras. The cortisone causes osteoporosis and so Te spine broke without an accident etc. Mostly I didn’t even notice it at first. The pain became worse and after a while I knew, it wasn’t a usual back-pain. When the pain was still there after 3 months, I had a feeling that maybe this was not “just” a broken vertebra. But as always I ignored that feeling and tried to get back on my feet. And now I am here.
Today I did some Internet- frustration- shopping and ordered audio books and movies to prepare myself for some more days and weeks in bed without any moving. Again I couldn’t eat. It’s very hard for me to eat when I’m in pain, and the new diagnosis didn’t really help.
More and more I realize what the doctors told me- even if the bone heals does not mean that the spine is stable enough for a lung transplant. The chance to get the lungs isnt very good right now. In the evening I dealed with all that and i was optimistic again. I knew, that i will make it. My will to fight is back, and it is even stronger than before. I want to enjoy my life, every little moment. So I asked the nurse to move my bed next to the window and enjoyed the evening sun on my face. I chatted with my friends. They are all so awesome. I have such a great team fighting with me and i am proud of that. I appreciate, how many beautiful aspects my life has. My health is just a part of me. Even when this part is not good- my life is still beautiful. You have to count your blessings. I know that my life is worth to be fought for.
I still miss Luis a lot but he helped me so much and supported me a lot so I felt so much better. He is still walking by my side, after all that. Most Probably most men would have left already. And when we talked, I knew I would go through hell, just to make our future- dreams come true. I want new lungs. And then I wanna go to Miami with Luis. And to get this, even suffering and standing pain for some months is okay.
I wish he could be here now and spend this hard, rough time with me, but unfortunately it’s not possible. But at the moment I’m not feeling lonely anyways.
On Sunday my sister is going to visit me and my mum will be here on Monday. I’m looking forward to that too 🙂
I want to thank everybody for the great support! I recieved so many nice twitter messages and comments here in the blog. I was very happy about that 🙂 !!
At the moment I’m looking for a hobby that I could do here in bed. To watch DVDs always sucks too.
riesig gefreut! I used to love silk painting but I can’t sit with this spine.
Haven’t had a good idea yet. But if I have one I will tell you about it here 🙂 Today in the morning I cried when I knew, that I have to stay in bed for some more weeks. I feel so locked up. Usually I’m always with my friends and always busy. It is not only that I feel bored. I really feel like in jail.
I really hope I will have an idea soon what I could do so time goes by faster.