Wednesday, 12 August 2015

I slept in the couch all night

I just wanted to sleep here. It felt better for some reason
Today my Mother and my brother is coming over to visit. And I just feel it is so much work having people here. And I don't really feel like it. But I  hope that I will change my mind later. I don't meet him often. And now we have all these fun boardgames to play.

My Neato vacuum cleaner keeps bugging me and bugging me. I just can't get it out of my mind. It stopped today also. Just abruptly stops in the midst of cleaning with the message "house cleaning - paused" .. But why?

It also gets stuck on my doorsteps. My old one never got stuck on the doorsteps.
I have been thinking about getting their newest version. The BotVac D85 instead and my money back for my current Neato. Because it is obviously also faulty.
It buggers me so much when electronics starts out working perfectly. And then all of a sudden it just stops working as good as it used to. And there is no explanation. Maybe I can contact Neato Robotics and ask them what I can do.
I have been feeling so sad the last days. Power supply broken, vacuum cleaner not working... :( I don't know what to do.

But what is making me depressed is time. I've got so little time left until things surrounding my tumour will get worse. And limit things I can do. Speak properly and eat normally.

I have lost all motivation and happiness in me now. Before I could get these happy kicks. Maybe I have not used my medication properly? I don't know.
I know now when people are coming over. I must share my  candy with them. But I don't want to. I want to have it the last few weeks I am still able to eat anything. They have a long life infront of them to eat all junk food they can. :/ what do I have now. 1 week?

Time really really really worries me. There are so many things that I want to do. Not traveling, I wrote about that before, I am so happy that I did all those things i dreamt of doing. But things at home, playing those RPG's, programming this game idea I have had for many years. Tinker with my electronics, I bought some expensive equipment. I want to learn things in electronics. I love learning.
OxyNorm doesn't work very well anymore. There is no medecine that I can take to increase my happiness.

I need to clean my table from Battlestar Galactica. I never really found what was supposed to be so good about it. But ofclurse playing all 4 players alone is kind of boring. I've also forgotten how many jumps I"ve made. Meh, no.
I want to leave in my Neato today. Because next week I might be forced to be in the hospital fot some time. And I HATE being at the hospital.

Makes me angry on some incompetent nurses. Well, they are not only incompetent,  they are stubborn. Especially when nurses are taking for granted I need to be given medecine through the feeding tube, sometimes they ask if I can swallow pills sometimes they don't even ask, they just take my feeding tube and starts pushing in medecine, no questions. And I tell them I can do it myself, -"Really? Can you"... how the hell do you think I've been able to be at home for several months. They always take for granted I just got the feeding tube today or something. I have had it for almost a year now. How can someone think in such a way, that everytime I need to get something throigh my feeding tube, I need help with it. Do they think I have been in a hospital constantly for a whole year?
And they can't even use the feeding tube correctlt, they're doing it wrong. Some medecine dont dissolve in water, but they keep beliving that it will dissolve. So I tell them, no it doesn't solve but I can show you how to get it in. When they do it, 100% of the medecine is still stuck in the syringe. And when I tell them this, they just ignore it and say "no it has been dissolved".. but whats then all that white goo left in the syringe?

Another nurse kept pushing in air and air and more air into the feeding tube to remove something stuck on the inside of the tube wall. I started getting angry and said stop doing that! It is for f*ck sake MY body! But for some reason you're not a human when you're at the hospital. You're objects that needs medicine.
It is so strange that someone who has job to take care of sick people. Doesn't understand so simple things as giving medecine through a feeding tube.
And when you want to tell them "You're doing it wrong, I want to do it myself. And I can show you", I don't really remember the reaction. Either they just leave to take care of another patient or they just tell me that it is impossible. NO! It is not impossible, I do this every single day!

The omeprazol that I need does NOT dissolve in water. OBVIOUSLY those little white balls in there needs to get into my stomach. And it is possible to get them in trough the feeding tube if you use gravity as a helping tool. Suck the little white dots up mixed in some water. Then hold the tube straight up and let the little balls fall down slowly.  Not all of it at once, it will get stuck. But you can always suck a little with the syringe to get it flowing again. It took me the first time trying this to figure this it out.

Also this feeding tube has a little balloon on the inside filled with water to keep it in place, so that it doesn't fall out. You need to change water in it every 2 weeks or so. So there are three different connections, one in red that says 7-10ml on it and the other normal one that sayd "Feed" on it, and one that is directly connected to the feed tube but is a little bit smaller and says "Meds" on it.

So three nurses have been here trying to replace the water inside this balloon. What do they do, they start sucking out from the tube that says "meds", and I stop them and say, "I think that is wrong", "Really? no".. And then alot of food and stuff squirted out, and she was confused and didn't know what happened. I said, look here, is a red marked entry that says 7-10ml on it, you can also clearly see it has a separate isolated tube next to the feeding tube where food stuff goes. And it was so confusing for them. So, no, not even three nurses got it right. The first fucking time I looked at the damn thing I understood perfectly well how it was supposed to work.

But some people, they never ever learn.

Maybe when I tell them to do things they kind of get the same reaction I get when some amateur explains something around electronics to me, in a very lecturing way.

I hate being lectured in things I already understand very well.
I just *sigh* and say "yes I know this". Worst of all is when they say something that is completly wrong with a very high confidence, in those cases I've learnt to just shut up. I wish I had that ability to answer calmly in a way so that they understand they're wrong.

Anyway,, I have had this feeding  tube now almost a year. I know what medecine can dissolve in water and what can't. Among rhe medecine that I take anyway. In the hospital they straight out told me that omeprazol cannot be given through the feeding tube, just like that, not even trying first. And I told them "yes it can", but just get a clear and confident NO back. "But how do you think I have been taking omeprazol up until now then?".. no answer.
So instead they gave me a chewing gum that would have the same effect. At that point I wanted to hit someone straight in the face... I need my omeprazol, otherwise I am going to suffer from pain and stomach acid. So they give me a chewing gum... I have removed half my cheekbone and I have problems chewing on things like that.

What do they think?

And then they try to dissolve the chewing gum in water and give it through the feeding tube *sigh* *facepalm*... I say yet again, give me my damn omeprazol, I have eating that since 2009. And never had any problems giving it through feeding tube 2010 and not now either.
It took me a long time for me to get back my omeprazol when being at the hospital. It wasn't until my mother called them and explainwd that I got back my omeprazol.

But because they were so incompetent and stupid and stubborn for a while when being at the hospital, I never got my omeprazol, or I got something else that didn't work. I started getting painful stomach acid problems in the night. When I finally said, now give me the fucking omeprazol, they gave it to me. But now 2 times per day, one in the morning and one before going to bed. They just strictly spoke directly to me that I "needed" that because I have had problems in the night. NOOO! It was because YOU did somwthing wrong, you experimented with alternatives that didn't work. I only need ONE omeprazol per day, like I always had for 5 years. But no "We, belive that you need this", they take control and decide what I need. That is the complete opposite of how it should be.
There is a little sign in every room that says "the patient knows his/her body the  best". Dont remember excatly what it says but the point is. I KNOW how much omeprazol I need. I have beeb taking it for 5 years. And I decide, they can not force me to do anything really.

Ending up at the hospital, which I will do some day. Is going to be the saddest day of my life. If I am so sick that I cant take care of myself I guess that it would feel safe to be in the hospital. But as long as my mind is clear and I am able to taking care of myself etc etc. Being in the hospital would be like going to jail.

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