What can I say? ;-)...
My only sunshine.
You make me happy
When skies are grey.
You'll never know, dear
How much I love you.
Please don't take my sunshine away".
Written by former State Governor Jimmie Davis and Charles Mitchell;copywright 1940 and 1977 by Peer International Corporation.
Since my last post the emphasis has been on mobilisation.
babysteps is the answer to finding a way to walk again. Each morning I wake up with two goals (a realistic one, and one that pushes boundries). It started out with just being able to sit up in bed. Yesterday I walked 6 meters in total to the door and back. Two days ago my stitches were removed. The 27 stitches somehow seem to have constricted me a bit, because my back now seems to be more relaxed, allowing me to move better.
Up to now I 
have managed to reach my secondary goal each day. The great thing is that, the question of will I be able to walk again, has been answered in a time period of less than two weeks. Yes, for sure, I will be able to walk again with walking aids. I will not venture too much beyond that fact as right now the feeling in my legs is not good enough to walk safely without an aid.
From my hospital bed, my life goes on partially virtually and partially IRL.
I have started to have
visitors. Preferably one by one, as I still get tired quickly. It was especially nice to see Aldith back after her trip. She brought me back some sunkist fruit...lovely!
It was quite funny because last night I was telling one of the nurses that I had lost 3 litres of blood during my operation. She told me that that was impossible as women only have 4 to 5 liters of blood. I said that that is what I remembered that the surgeon had told me. She said that it was probably more like 300cc and then suggested to look it up in the operation report. She came back looking rather flabbergasted as it was actually more than 3 litres. I was 3,5 which is 7/10 of what I have. She explained to me that the blood that is given to you is also immediately replaced by the body. This alone is an energy consuming matter. No wonder I felt much better after the second blood transfusion. At least now, my anaemia is under control. .jpg)
I spend quite a lot of time on the computer. I check my mail, do my payments, check things for the new house, help coordinate the changes at my own house. I even signed the contract for my new appartment! I entertain myself on social media like Twitter and Facebook and all this is so great to keep my mind off only being or feeling ill.
The Twitter society has been especially helpful. They are around in the middel of the night when you wake up and feel bored. But they have also sent met loads of cards, visited me and even helped me fix my house. I hope that the Queens communication officers tell her that social media are called social media because they are infact SOCIAL. *I am referring to the Queen's speach in which she said that internet had an isolating effect on people.*
Being in the hospital this long in the neurology department is quite strenuous. You share the room with 3 other cases and usually they are pretty severe cases. Sleep is difficult because there is always something going on in the middel of the night. People crying it out, new people being admitted, you name it... I seem to have landed in the room with a television connection.
I have Aldith as a relative, and my two neighbors are also family to Dutch Celebs Yvette Forster and my favorite upcoming actor Chemsedinne Amar.
So you might wonder how Kiara is doing with all this going on. 
I don't get to see her that much because she is being kept busy. The disappointment of not going to Brazil was something I wanted to compensate. Melvin and my Aunt Tirza suggested to take Kiara and Jermaine to Center Parks. They left on Tuesday and came back on Friday. Melvin went shopping with them for mother's day. On Saturday Kiara suprised me with a visit as she wouldn't be able to see me on Sunday. She had made me a decorated CD at school with a poem and she also bought me a silver charm of a bird that looks like it is about to take off in flight. How appropriate! I miss her dearly. She is now camping with Jesse her schoolfriend and tonight, she is off to Zevenaar to stay with my parents until the end of the week. All in all she has had a lovely holiday. When the holiday is over, I hope to see her more often.
I would at this point also lik
e to mention that my roomy of the last admittion, has also been re-admitted last night. Nicole came in with an unknown neurological complication. After many negative tests, they are opening her skull today for brainsamples. The tragedy is that she is hoping it is cancer...because that is the only way they might be able to treat her. Nicole...I am thinking of you all day. Hang in there girl.
After the operation on my back I had come to a point that my energy level had dropped to an all time low. After having had the blood transfusion I slowly started to regain some strength. The muscles in my legs had no tonus whatsoever and that means that my journey to rehabilitate starts at the absolute beginning. I have to learn to sit, stand, and hopefully walk again.
The first 5 days it was necessary to regain energy. That is hard if you staying in medium care because it's too roudy to sleep properly. They wanted me to stablize before moving me to another room.
When I had been moved we immediately began to mobilize. Simply sitting up in bed is proving to be a problem as, now, my whole back is scaffolded from the top to the bottom. Strangely I am not in too much pain. The first exercise therfore became to practice sitting upright. I use the mechnics of the bed to get me upright. Nurses and physical therapists ask me to teach them how the bed works. LOL! The bed is also instrumental in getting me to sit on the side of the bed and therefore that became exercise #2. By the day before yesterday I tried to stand. It took two people to hold me. I had too little strength and my legs slipped away.
I knew that exercises in bed would make my muscles stronger so I had already started to exercise staticly in the other room. By this time I was doing those exercises every hour.
It payed off, because yesterday, I managed to stand with my own strength for 30 seconds and today I managed to stand up 2x and take one step. I bet that you can see an upward pattern. I have left the beginnings behind me now. I look forward to each new step that I take.
I am in 
a fun room with a man who had a stroke and with Gregory who I know from the reggae concerts. Imagine having this next to you...what a treat!!
In the mean time I have had mostly family visits. This up coming week it should be OK to have more people visit.
As for the next 
period: a new treatment plan is being made.
We have started 
to reduce the Dexamethasone dose. I am so happy about that because I have started to grow a moustache. Thank God for wax strips! Now lets just hope I don't lose too much strength.
Today things are going well. My mobilisation is off to a start. I managed to sit up on the side of my bed and to stand with help from the physical therapist. Fantastic! Task for the day completed.
I have also moved rooms and am now at 2B.28.2 with the less than fabulous view on the left.
My new journey has started.
.
Recapping this week: It all started on Monday, when in the course of the day it gradually became harder to stand. I was frustrated about my progress and reported this to Dr. Lips who in response told me to cancel my trip to Brazil in exchange for a shorter trip. Then there was the mistake at the hospital regarding the embollisation. I was rescheduled for Wednesday morning. By monday night I was walking so bad that we felt it wasn't safe for me to go to the toilet alone. We ordered a toilet chair for the next day and a bed pan just in case. That was a clear sign of deterioration, but I figured that I was going to the hospital anyway. I called the hospital to ask if I could be admitted on Tuesday night rather than wednesday morning regarding my transportation, then in the course of Tuesday I got more and more worried, as I could feel less and less in my legs. Marcus was going to drive me in a wheelchair taxi, but by the evening I was wondering how I could sit in the first place. I called the hospital and told them I needed to see a neurologist. In the end I called an ambulance. I left home warning the family that the embollisation was going to be cancelled and that I expected emergency surgery. By the time I arrived in the hospital it seemed like I was paralysed from the breast (TH6) downward .
Coming into the hospital was a mess as I was told to report to the first aid. The co-assistant was badly informed and kept me in that department for 4 hours. It had been a busy night in the ER due to stabbings in Amsterdam on the Rembrandtplein.
4 hours on a stretcher is killing for me, and the fact that they nw so little about me really frustrated Marcus. At one point I told him to go home, it was so late and he had to work at 6 and to look after Sidney too.
Eventually they brought me to my bed which had already been reserved. The co-assistant made plans to make scans in the morning. At 7:30 The radiologist came in especially early to scan me. By this time my embollisation was scheduled. That schedule was overthrown by the Neuro- and Orthopedic surgeons (Dr. DP Noske and Prof. Dr. BJ van Royen). I was presented the opportunitity to undergo an emergency decompression of the spinal cord. In my case this meant that they wanted to reverse a procedure which was paralysing me.
This was exactly what I had expected. In fact,I had been the one who decided to not eat in the morning just in case. By 10.00 I knew the operation was on. Things went so fast that I ended up asking the pre-op to inform Dr. Lips. I was already in the surgery room when he called and told them to wait for him. He wanted to make sure I was OK with the decission.
The operation took a good 4 hours and I lost 3 liters of blood. I was still in the wake-up room when Melvin and Kiara came to see me. I had an outer body experience from the narcosis and seeing that angel-face just brought right back down-to-Earth. Kiara had made a special effort to look beautiful. She was wearing all the jewelry I had given her.
Before the surgery I had made the hospital promise me a bed in 2b rather than 2c where I never want to go back again (I even bribed them by threatening not to go through with the surgery). They still made me stay there one night though, and in the morning I was moved back to Neuro.
I felt the fatigue of the last week come over me. I also look like I have been assaulted!
I had 3 drips, one drain and a cathether, and NO intravenous anesthetic! And guess what? There is hardly any pain! Tests throughout the day showed that the operation was succesful. The strength and feeling in my legs was starting to come back. 
I am in an observation room with 8 
other patients. This is my view:
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