Good morning, dear diary,
the world has once again decided to fuck me. Unfuckingbelievable. As if all the crap from decubitus ulcers to respiratory distress to €7,000 claims from my own nursing service against me weren't enough, let's add to it. Let's not only bleed Patrick's account, but also his gums.
As announced, I am informing one of my family doctors who is looking after me in this matter.
Good morning One night later, which was hardly existent for me despite Tavor and Zolpidem... I've been bleeding from the gums for 24 hours. Even I find the amount alarming. What can we do? Kind regards Patrick Ruppelt
Rounds follow, as if I were in the intensive care unit in hospital and not at home. Stupidly, everything takes time. Draw blood, take a swab, check the results from the lab. Recommendations for action. Come in and check. Depending on the lab results, order medication. And so it goes on and on. While I myself try to lead a halfway "normal" life despite my ALS disease - with friends, girlfriend, sex, drugs and alcohol - the universe tries to save me from all that and instead tells me every day that I am a care case.
After the blood sample has been taken and a smear test has been taken, it's time to wait again. Waiting for better weather, you could say. Because the clouds over Grünwald are getting darker and darker. To stop the bleeding, my doctor would have to put a swab and compresses on the wound. But that's not as easy as it sounds. It is bleeding so constantly, very, very little, but it feels like it is bleeding from all sides that no single wound can be identified.
The swabs and compresses don't work either. I would have to have more strength in my lips. They don't stay closed when you squeeze stuff between your teeth and gums. That's a serious problem with the nasal mask. Then the air no longer flows into the lungs, but through the nose into the mouth and out again. Breathing is impossible.
Then there are some drug therapies. But for that, the laboratory is needed first. That will "Already" expected this afternoon. Or should it be called, it will be "first" expected for the afternoon?
Same day. A little later. The landline rings. Oh yes, I still have one of those. For my younger readers, a landline is one of those things you talk into. Someone else hears what you said on their landline phone at home. And vice versa, of course. Something like a mobile phone. Only four times as big, without internet and without Whatsapp and Instagram. But the battery lasts a whole week and when the warranty expires after two years, guess what happens? Nothing. It continues to work for years. If the battery really isn't that fresh any more, you can buy a new one for €20. Take it with you? No, it's a fixed network. That doesn't just sound like a fixed network. It's actually meant to be. There really is a cable with two thin copper wires in the cellar from outside into the house. That's why it always has a network.
My doctor is on the phone. The lab is not here yet. Unfortunately, the dentist I'm friends with doesn't make house calls. After various conversations, one thing crystallises. No one will do anything at home. For follow-up care and constant dental care, my practice is asking another colleague who makes appointments outside the home, at least in the old people's home one street away. Maybe he can come to see me. Unfortunately, that doesn't help us at the moment. The bleeding goes on and on. A solution is needed. My doctor doesn't want me to lie here untreated any longer. I can hardly stand another night without sleep. I have been awake for about 26 hours now. I'm not even walking on my proverbial gums any more.
To be able to walk on your gums, you have to be able to walk. And have gums.
My carers show different reactions. But I can put up with my condition much longer. The professional carers can't stand it and I can't stand it any longer with the less professional carers.
The crux: the solution is called hospital.
My doctor has already phoned Klinikum rechts der Isar (KRI). We need an intensive care unit and oral surgery. Probably also a local anaesthetic. So we still have to ask for anaesthesia. Great, then we'll have another patient interview. That's a joy. That means two days in hospital. But the statutory health insurance doesn't allow that to be billed without further ado. It should be three days or more. The hospital would be stupid not to keep me an extra day. For observation, as they always say. They haven't done more than observe and bill in hospitals in the past few years anyway. I had a bronchoscopy and a PEG. All the other appointments? As I said, observation. Supposedly for documentation purposes. Unfortunately, not one of the doctors treating me has seen them. They all start from scratch. What an indictment.
Wait, take a step back, please. Local anaesthetic? Either we make the best of it and you shoot me into the land of dreams or I want to see what's being butchered in my mouth. I didn't want any anaesthetic during my spinal cord biopsy, so I'm certainly not going to start with a bit of gum sclerosis. It's good or it's bad.
But it won't come to that. I'm not going to the hospital. Not for that.
