Pet the monkey and go straight to the organ grinder

 Not dead yet- came close, though. In the beginning of September I had breathing problems, was told to go to the A&E (emergency room)-which I thought would kill me off faster than whatever was wrong with me-and turned out to have blood clots in both lungs. I resisted going-but was told that I would be dead by the next day if I didn't go. So off I went. Talk about being incredibly lucky.

I was on anticoagulants for six months-SIX months-before someone decided to do a CT scan to see if the clots were still there. I self injected every day-and every day I felt like I just couldn't function. It wasn't just a side effect of the blood thinners. It turned out to be a side effect of the blood clots. I know that because I pushed and pushed hard-and pushed some more-for some answers.

I once told you that the best piece of advice I was given as a teenager came from my grandfather. He said that I should always remember-especially when I was old enough to start working-to ignore the monkey and go straight to the organ grinder. So many times I ignored that advice and so many times I ended up shooting myself in the foot. Now I know better. But-you only persevere if you don't mind making enemies. I've got loads of those now.

I started to insist that I have a scan in December. That would have shown progress-or regress. But I wanted to know, because I felt that bad. The NHS being what it is (crap), had nurses taking the clinics. The doctors were obviously far too important to take the time to talk to a patient. I was told by a haematology nurse that I wouldn't have a scan until April. Why not? Remember that I was fed up with being fobbed off and started to push. Her answer was that if I didn't see results I would be upset. Seriously!

Now I last wrote in January, and I finally saw a doctor who ordered the scan. But-this is after the first haematologist forgot to order it! And I still had to self inject, so I was losing a lot of weight and I was pretty incapacitated. I wasn't sure which was worse: the condition or the cure. The CT scan-which was supposed to be reported the following week-wasn't reported for over a month. The bottom line? No blood clots. However, I will have to take tablets, probably for life. Nobody knows what caused the clots, how long they were there before I showed any symptoms, and-nobody has a clue,

But the best part of the story is about the antibiotics that I have been nebulizing for the past fifteen years. The family doctor suddenly decided that she wasn't going to prescribe them any more. Apparently they're too expensive. That's because they work.

No matter how sick I felt I knew that I had to start yet another fight. Organ grinder. The process of getting what I both need and want started in the beginning of January, and is far from over. But-threatening to go public, making a formal complaint against the hospital (I can tell you another time about that one), and, of course, the possibility of a lawsuit made the hospital capitulate. I've got enough of the antibiotics for the next three months. They're all probably hoping I'll be dead by then so they'll save money.

That brings you more or less up to date on the big stuff. I'm determined to have a life-finally-because I've spent the last six months (now nearly eight months) both fighting for my life and fighting for something that resembles justice. I can tell you that if you have the patience and the perseverance-you will win. Even if you don't win, you will never lose. It takes a fight. It also takes the refusal to listen to the monkey.

Now it's time for a very strong coffee...

Missed the holidays, contracted Covid for the third time, and still alive-but a few lives down...

I'm lucky that I'm not a cat. I would have two lives left-if I'm lucky. It's been that kind of six weeks or so since I last wrote. I missed Thanksgiving, Hanukkah, Christmas and New Year's-and any others that I missed, well-apologies. 

It's now been eighteen weeks since I started to self inject the anticoagulants; I'm still feeling like crap-only this time, like Covid crap. I was too unwell to actually sit and write in December. The blood clots, chest pain and breathlessness-and severe tiredness-meant that I really couldn't go out anywhere. I'd suddenly have to stop and grab my chest-not that doing so would make any difference. I was totally miserable and I was feeling very sorry for myself. Add to all this that everyone around me seemed to come down with a super virus that left the victims sick as can be for at least two weeks. Hmmm...

But-like the seasons (not that we have any over here), everything changes. The very severe and arctic cold weather, the torrential rains, the violent windstorms- they all kept going on and on and on-along with my symptoms. I  knew that it couldn't last forever. Either I would die or I would get better. Obviously, I didn't die. So I consider myself lucky. 

I'm not in nearly as much pain as I was eighteen weeks ago-or even eight weeks ago. I still get breathless, sometimes too often-but the anticoagulants are most definitely working. Now I have to fight to get a CT chest scan to see if I can get off sticking needles in my abdomen. That stuff hurts!

And there's more. I flunked a PCR test two weeks ago-so there I was, still walking at the crack of 6am, in the dark, complete with mask (and crutch), determined that nothing was going to stop me from getting outside and getting what passes for air. I am very fortunate (once again) that I had the variant, and it wasn't nearly as life threatening as the Covid-19 of four years ago. Four years! I didn't think that I would be affected by Covid four years ago, but I certainly was-and so were you, probably.

While things were beginning to go quiet-or, at least, quieter- now I have an update that will make you roll your eyes in disbelief. I still shake my head, thinking that there are some absolutely insane people out there. We know this, since you've read about a few of them. But this one is a corker.

Sharps bins are not to be left with the pharmacy, or the doctor's surgery, or even the hospital. Since the pandemic, the NHS has contracted a company to send their drivers to collect full ones and deliver empty, brand new ones. So-six weeks ago I shut and locked the full sharps bin (30 needles and syringes), bagged it, and left a large note on the bag, which I had to place outside the building. The collection could be anytime between 7am and 4pm, and someone has to let the driver into the building. I leave well before seven to go to the hospital for infusions-so I left instructions with the company to collect it outside. Okay? Fine. I know that you got this. But the neighbor downstairs-who has always been a bit of a total nutter-decided that the bin was outside her window, and maybe it was a bomb. That's what I said: a bomb. So she rang the landlord, who rang me, and I 

couldn't stop laughing. I then had to tell everyone else on the ward what was so funny-since everyone was listening anyway. There was really nothing else to do, and I wasn't exactly quiet about it.

Now-two weeks ago I had another full bin, arranged for the collection, and asked the landlord's rep-called Sharon-to ring Florence (we all call her Big Flo: about the size of the late Cyril Smith but without a functioning brain) to tell her that another sharps bin would be out the next day-and please don't touch it, because it isn't a bomb. What do you think happened?

She didn't touch it. She and her carer stole it. This moron and her hired moron stole a full and locked sharps bin. They took it, it took two days for me to get it back-and that is because I blew a fuse, started emailing everyone who had the authority to actually do something to get it back, and finally called the police. Ringing the police did the trick. Sarah Green Fried, the coordinator (lazy bastard that she has always been) must have been told by her boss to handle it. She finally emailed me to say that they found the bin, and that it was all an honest misunderstanding. Seriously. Not only is Sarah a lazy idiot (another one who is the size of Cyril Smith because all she does is sit in her office and eat), but she really believed that I'm stupid enough to fall for "misunderstanding", rather than the truth: this was a deliberate and malicious act that could have caused-who knows what would have happened if children had found the bin, smashed it open, and discovered thirty used syringes and needles? Or a drug user, who would most likely think it was Christmas?

The outcome? Big Flo was told off by the council's antisocial behaviour team, and was informed that if it happened a second time, there would be repercussions that she would not like. There's a difference between some total asshole who enjoys causing trouble for the neighbors-and someone whose actions could endanger the lives of the public. Actions have consequences.

I'll know soon enough if history is going to repeat itself. The stolen sharps bin and a second full bin are out for delivery-today. That will be interesting, to say the least. Fingers crossed. But I spent two weeks trying to stop myself from thinking the worst case scenario. Whatever happens, none of this can be my fault. According to the police, the blame (or responsibility) lies with the thieves. Even though Big Flo is clearly missing her marbles (perhaps born without them. Who knows?), the parties who stole the bin will be the ones who get busted.

Maybe the next time I see her I should ask her if she likes prison food?

I'll keep you posted. Now it's time for a very strong coffee!!

Montezuma's Revenge

Eleven weeks and counting. Seriously. Counting. At least I'm not down to counting days, hours, minutes. Not yet, anyway. Eleven weeks ago today I was incarcerated into the Dementia Central ward for crazies. You know how badly that affected me (and my hearing, too). But-that did have a somewhat interesting conclusion.

The injections of  anticoagulants have had really nasty side effects; I'm told that I will have to live with those until the end of March, which will be six months from the first jab. By side effects I don't just mean nasty bruises to the injection sites, or headaches, or occasional nausea, or the terrible dizziness that's part of the process-or even severe weakness. It's been very hard to even get out of bed in the morning-and that just isn't like me at all. I mean what happens when we eat something that disagrees with us-or food poisoning-or stomach flu. I mean that what goes in one way has to eventually come out the other way. Sometimes this happens much faster than we ever imagined (usually when we're in public). It's the runs, people. My grandfather used to call it Montezuma's Revenge. No-I don't know why either. But it sounds more delicate than saying that someone's got a bad case of diarrhea. And that's another side effect of the blood thinners. But I was told last week (by an immunology registrar, not by hematology Nurse Ratched) that I will have to somehow find a way to live with all this until the end of March-and that it's better than dying, isn't it? Well-when he put it like that...

So that's why you haven't heard from me. I feel like all I do is complain. And, let's face it. Nobody likes a moaner. 

I've got good news, though. All of a sudden I'm feeling a bit better about living with anything. In June I went to see the neurologist (yet another team. I've got loads of them). I said that I'm forgetting things: names, places, appointments, etc. I was worried. So he ordered a brain scan. I can truthfully say that it won't be cancer, or gentamicin, or heart trouble, or blood clots that will carry me off. It'll be the radiation poisoning from all the scans that'll kill me.

So- I had the brain scan, and then I went along for nearly seven hours of memory tests. Two hours one day, five the next. One ten minute bathroom break. Nothing else. Good thing that I have good kidneys. I got back completely exhaused (and thirsty). But I never had any results and I wondered why. I had an appointment with the neurologist yesterday afternoon. 

Now, talk about depression and anxiety! I had an acquaintance who was diagnosed with dementia in May. She doesn't remember me now. And after the five day torture in what I call Dementia Central, I was becoming afraid that I would end up like them some day-even if they were all thirty years older than me, it still bothered me. I needn't have worried.

The consultant sat me down and told me that brain cells start dying off around the age of 30, so the brain does shrink. I said that nobody  wants a shrunken head-but he said that all of us start to show signs of aging, and it's better than the alternative (don't you love that expression). Then he told me that I do not have any signs of dementia, and probably won't develop any, either. He said that the doctor who tested me has many years of experience, and that I surprised him and the rest of his team by being very high functioning. He said that the testing team would like to do some tests to see just how highly functioning I am. Goody. More testing. I said that I want to get past the blood clots first. Apparently I impressed everyone. Now- I have never been really good at accepting compliments, but I was so very shocked that I just said thank you. He will be seeing me again after the anticoagulants are finished. 

What a shocker! I nearly skipped out of his office. So many things have gone so badly that I had very low expectations that anything was ever going to go right. I keep looking around to see what is going to go wrong next. Maybe that should be a new year's resolution: try to be much more positive and optimistic. Hmmm...would I be so much fun then? Doubt it.

That is my update for now. Christmas is only two weeks away, and if it stops raining I'll be able to go outside and view all the decorations. Some have always been terrific. Others have been so dire that the people who put them up should run and hide...

Keep your heads down, people are now shooting each other in London, too. Stay safe and I will write again soon. Maybe I'll get lucky and the blood clots will disappear. Meanwhile, it is most definitely coffee time. 

Dementia Central is in the rearview mirror

 And finally-it's been exactly six weeks since I was released from my enforced incarceration into the hospital-and on Dementia Central, no less. I'm so very lucky that I got out with my hearing, not to mention my sanity.

I've had a seriously nasty time since I got a reprieve from the three screaming women. I'm quite certain that they forgot all about me in less than an hour after I left. I didn't forget about them, though. They stayed with me for awhile. I've never had to deal with anyone with dementia before, and I think that any carers or family are incredibly heroic. I couldn't do it. Within a few hours of listening to the rants, the screaming, the swearing (some of that came from me, truthfully), and the woman across from me taking her poo and smearing it all over her face (someone should have told her that it isn't a face mask), I was ready to throttle all of them. I can only take kindness and empathy so far...

I was so thrilled to get out of there that the first thing I did when I got in the door was make a very strong coffee. Bliss. Then a shower, as if I could wash off the preceding five days of extreme torture. I contacted everyone just to say that I was still alive.

I did arrange for tests for dementia. All I saw for days before my "prison sentence" were ads for dementia, dementia was everywhere. It wasn't until I saw my GP that I discovered that it wasn't some insidious plot to tell me something I didn't want to know; it was Dementia Awareness Month, so there was advertising everywhere. Thank goodness.

I took some tests and made the momentous discovery that I don't have any form of dementia and that I've still got all my marbles-in the right place and functioning perfectly. Forgetting things is normal-unless you forget everything, in which case - go to the doctor. And my 45 year old friend complained that she suffers from senior moments. I had to correct her: they aren't senior moments, they're pre-senior moments. She's only 45, Her brain isn't going anywhere.

But-it all gets worse, and everything went to Hell. I've been self-injecting the blood thinners for six weeks, and I was told by someone over the phone-over the phone, would you believe! = that I need to continue on the anticoagulants for a minimum of three months-possibly six months. Apparently it takes at least three months for the blood clots in my lungs to dissolve and disappear. That is what is written-and, of course, what is written must be true. Except when it isn't. And their protocols are BS anyway. Who lets a patient self-inject anticoagulants without checking to see if the medicine is working, and how well it is working, and the possibility that I might be absolutely fine in three months, not six? But the nurse told me-very rudely, in fact-that nobody will do anything because they're adhering to the guidelines. I questioned that-and her rudeness-and called her Nurse Ratched. Lucky for me that she wasn't a fan of the film, wasn't it?

So I got to work. I started emailing. And if you've been with me for awhile, you know what happens when I start emailing.  I don't stop until I get a satisfactory answer. So I emailed the immunologist and told her that there is absolutely no cooperation from the haematology team, and that some very nasty nurse I call Nurse Ratched refused to let me speak to the haematologist. I said that thirteen and a half years ago some absolutely incompetent doctors told me that gentamicin was safe and that they would be "watching me". I reminded her that they did such a sterling job that they nearly killed me; instead of killing me, they crippled me. And I said that I wasn't going to allow that to happen again. She emailed back, and told me not to worry, that she was going to email the haematology consultant.

The short version (or, short-ish version) is that my immunologist will be watching and I will have a phone call from the haematologist in December (before Christmas). And, if necessary, the immunology team will order a CT scan to see exactly what's going on in my lungs. I did point out that if anyone finds gold or diamonds when they scan me-they can't have them. But they're more than welcome to the blood clots. Amen to that.

The biggest problem now is the challenge to walk and stay upright. Anticoagulants have side effects: headaches, severe weakness and exhaustion, and profound dizziness. As you know, I'm dizzy enough already. So that's been a challenge. Then, of course, and saving the worst for last, is the tendency to bruise. I gave myself two big bruises after injections, but I've been doing this for six weeks, and I did a better job than the nurses did in five days. They gave me some massive bruises. They must have been in a hurry. 

My legs are so bruised that I look like I've been kicked by a horse (I've never been kicked by a horse, but if I had, it would probably look like my legs look now). I also bump into things-especially with the added dizziness, so every once in awhile I'll turn around and bump into something that would normally not bother me-but it would bruise (and hurt).

I have to admit that I'm so lucky that I got to the doctor in time to be diagnosed with blood clots. Apparently, if I'd waited much longer it would have been too late. So I'm sitting here and wondering that if I was a cat, I'd have gone through at least seven of my nine lives. Perhaps even eight. 

One of my very close friends said that I'm just always so unlucky. Actually, that isn't true. I'm extremely lucky. Every time I've had a very close call-and there have been way to many of those to think about-I somehow managed to survive. How much longer is anyone's guess. When I can stop bumping into things long enough to just sit and think, I'll have to decide what I want to do when all the injections are over and I'm fighting fit again. Or should I say when I'm fit again? 

I'm gearing up for Thanksgiving. I certainly have a lot to be thankful for. Plus-close your eyes if you're vegetarian- there will be turkey. And stuffing. Sweet potatoes. Cranberry sauce (homemade, too). I even might splash out on a bit of wine. I've got loads at home, but it's so old it can probably be used as very expensive vinegar. But I'll write as soon as anything is happening. 

Why is it that when a man asserts himself and stands up and fights for himself, he is looked on as a hero, someone who is admired for his forcefulness-but when a woman stands up for herself, asserts herself, won't back down until she gets results, she's called a bitch? Huh. There's something for you to think about.

 

Groundhog Day in Purgatory - and a week in Dementia Central

 It's either Groundhog Day or I'm secretly like a hamster on a wheel. It's been that sort of month since I last wrote. I was thinking of what to say since last time-perhaps something different, rather than the same old thing-and then the fertilizer hit the fan.

It started with severe chest pain- and I started to worry that the ablation had failed, and that I would have to undergo a third one. Needless to say, I just kept my mouth shut and hoped that everything would start to ease. But I had severe chest pain on my right side-and unless my heart decided to take a stroll into another part of my body, it looked as if I was having a lung problem. I became very breathless; I could hardly walk ten steps before I had to stop and do some breathing. Stairs were a problem. Everything was a problem.

I had a consultation with the immunology consultant coming up, so I decided to wait and tell her what was going on. So much for Groundhog Day...and for the wheel...

I was told to go to have a chest X-ray. I did that, and I waited. And waited. And waited. I finally had the X-ray and was thrilled to get out of the hospital after a four hour wait. The next day I had my infusions. I was told just before they started that I had to return to the imaging department for a CT scan. Why? I asked. I was told that the scan had been ordered. So I went. Grudgingly. Again, a lengthy wait. And another cannula. And more bruising up my arm because my veins are difficult to cannulate. So I went through that-and another three hours later I was on my way back.

Friday arrived, and I was feeling very rough-so I struggled to do my prescribed walk, and had to rest. Talk about feeling old and frail! Then I received a phone call that changed everything. It was from one of the immunology doctors. The X-ray and the scan showed blood clots in my lungs. I was gobsmacked. Clots? Plural? I asked. Yes, he said. Lungs? Plural? Yes-again. He told me to get over to A&E as soon as I could and ask for the medical team. Apparently the medical team expected me. So I made sure that nothing was cooking, all the lights were off, and I was on my way back to the hospital.

The short version: once again I  had a cannula inserted in my arm. I've got so many huge bruises up my arm that you would think I was on drugs. I sat, and sat-I was told that the bloods had to come back before they decided what to do. From 6pm to 10pm, I sat like a lemon, watching people come in and out, watching while patients who were waiting (it was an emergency room, after all) started shouting. And then I was told that I was being admitted. You could have knocked me over, I was that shocked.

Off I went-by wheelchair (now I really felt decrepit) to the 10th floor. I was taken to a room with three other patients. I wasn't told  that all three had dementia. Did I ever find out quickly!!

The woman next to me had been there for weeks; they were unable to find a care home for her. No surprises there, she was screaming from the time I arrived to the time I left. Where she got the lung capacity-and how she didn't lose her voice-are still a mystery. She screame so loud they could probably hear her in Liverpool. And she spat. And kicked. and scratched, and swore. At top volume, all night and all day for the five days I was there. And the other two-well, across from the screamer was Jill, who shouted, cursed, swore at the nurses-and at me-and showed herself to be a racist by the things she said to-well, everyone. And the woman across from me shouted every time anyone came near her-which was often, because she was incontinent and had a habit of taking her feces and playing with them, rubbing her face with her poo. Delightful, don't you think?

All three were incontinent. All three screamed, shouted, swore, and needed constant changing. And I was stuck there for four days and nights. I had no sleep, and I was, truthfully, ready to throttle all of them. I kept complaining and asking to be moved, but I was told that there were no beds (I seriously doubt that), and that I should ignore all of them. 

That is why I started calling the room Dementia Central. I complained to my consultant when I left, but she couldn't do anything either. What moron takes a person who has no sign of dementia (a normal person), and isn't incontinent, and puts her in a room with a bunch of screaming, abusive crazies? 

At least I've still got my hearing-and my sanity. And blood clots in both lungs. I'm now injecting myself daily with anticoagulants to try to get rid of the blood clots-which are very dangerous. I get to have so many scans that it won't be cancer or blood clots that'll kill me. It'll be the radiation.

I was so shocked by the horrific experience that I told my GP that if I ever develop any form of dementia-Alzheimer's or any other, because there are several-I will fly over to Switzerland (assisted suicide is legal there) and go to Dignitas and that will be the end. I really, honestly, never want to end up like any of the three "roommates". I felt terribly sorry for all of them-but only for the first sleepless night. It got very wearing, very quickly.

If anyone is caring for someone with any form of dementia, you should get a medal.

Now I'm going to do what I started to do on Friday: laundry! Boring, but consider the alternative...

Mickey, Minnie, and the whole bloody extended family

And here I was, congratulating myself on refusing to be grumpy. Grumpy: no, pants, yes. We all need our pants. 

This positive change of heart nearly worked, too-until I nearly had a seizure when I saw a mouse run across the kitchen floor. I think that I shouted "shit!". And I figured that if there was one, there must be an entire family. So I started spraying clove oil everywhere. Clove oil, or so my neighbor (a mouse veteran) tells me, will put off mice. They don't like the smell of clove oil, or peppermint oil...

I tried to put down clove oil everywhere; all I succeeded in doing was nearly asphyxiate myself in the process. The smell of clove oil permeated the flat. To be less PC, the whole place stank of clove oil. I even smelled of cloves. Some people moved aside as I was coming up the road. Perhaps that's the secret of getting people to avoid crashing into me as they're tapping away on their phones-or are simply completely unconscious. Clove oil. Come Christmas, I will be in hiding.

Well. This is what preoccupied me since I last wrote. The weather wasn't great: rain and more rain, cooler then hotter, and we're supposed to expect very hot weather all next week. My attempts to stay upright were very so-so. When the barometric pressure changes, when it rains, when it starts to get dark-all these weather changes seriously affect my attempts at something resembling balance. But-I didn't fall over. I call that progress.

I finally had to give up trying to be kind and get the mice to go plague someone else. I used clove oil. I then used peppermint oil: nicer, but then I smelled like a candy cane. So did the flat. I felt sick from all the smells, and the mice-the last time I looked, they were line dancing. So I called in the big guns: mouse poison pellets. Will they work? I bloody hope so. Otherwise I'll have to sleep in the park.

As for Mickey and Minnie-and the rest of their family-I said this morning as I put down more poison (the little gannets scoffed everything I put down last night), they have a choice: leave or die. If necessary, I'll have to call the mouse patrol (exterminators). 

I'm not grumpy, though. I'm too busy to avoid asphyxiation from clove oil... 

Grumpy Pants: A new and timely lifestyle

 I don't usually call myself names-unless they're things like wonderful, and fabulous, of course. During lockdown I decided that everyone would benefit from being as kind to themselves as possible, given that we might all be dead tomorrow anyway. Let's all give ourselves compliments - if we don't, who else will?

But-this morning I looked in the mirror and saw Grumpy Pants looking back at me. And I went into Marks and Spencer for some food, and spent some time looking (carefully, obviously, because who wants to have the crap beaten out of them because some moron says they're staring) at other shoppers. It was an eye-opener, that is for sure.

If I'm Grumpy, then I didn't have to look far for the other six dwarfs. They were coming past me two by two. 

During the pandemic, people were uncharacteristically polite. Some were even helpful. And now, three and a half (approximately) years later, they're all back to their nasty, rude, obnoxious, stupid selves. They don't look where they're going, they expect someone on crutches to sprint out of their way, and most of them are just generally a huge pain in the ass.

So Grumpy is justifiable in my view. That should be the number one baby's name this year. Or any year. I admit to sometimes wondering what would happen if some nitwit on a bike rode up onto the pavement (which they do regularly), no helmets, no lights on their bikes, no license plates (handy so that someone could identify the body) and some elderly bloke on one of those four wheelers rode into him and tossed him in front of a moving bus... I'm waiting for that to happen, just so I could have a good laugh. 

Grumpy is good. Irascible might be better...