Another week has passed and what a bloody week it’s been.
Tuesday, I had the surprise infusion where they upped my last dose of 5mgs per kg, to the new 10mgd per Kg by giving me a second 5mg per Kg. Hope that makes sense.
I was warned there may be some worse side effects which, as they were doubling the dose made sense. The infusion itself was fine, I got Ed who I really like, he is very meticulous and careful and really nice to chat to.
He wasn’t sure if the cannula was in right at first, as it was flushing well, but didn’t really want to give him blood when he pulled back on the syringe, so he got someone to just check it. They were happy it was in and so they started putting the premeds in. This runs for about 10 minutes.
Ed told me if there was any signs of a bump to give him a shout as he still wasn’t convinced it was in right, but it must have been cause no lump formed.
After the premeds the Infliximab was started and I sat and read my book, occasionally stopping to respond to messages from Dan, Sammy and my mum asking how I was doing. I had the iPad as Dan had taken my mobile as he doesn’t get internet on his old brick of a work phone. So we swap over and I have the brick and the iPad, as I can connect to the hospitals WiFi and he has my phone so he can find things for him and Kye to do while they wait with its 4G.
This time that seemed to mainly involve stomping round shops trying to find me an affordable refurbished laptop (no luck there though) and hiding from sudden down pours, under a bridge lol.
There bridge hidie hole lol
A very wet Kye hiding under the bridge.
A very wet Dan once they had made it back to the car.
Needless to say, I think I was having a better time in the warm, with my book, good conversation and a nice hot cup of coffee lol.
Any who, everything was going well, the Infliximab part was done in two hours and then the flush, which is really just another ten mins of the premed bit, that’s got the steroids and antihistamines and all that jazz in it. And then the cannula needed to come out. Oh my days, let the fun begin!
So Ed starts to remove the cannula and he says to me before he does, ever had any problems when the cannula is taken out blood spurting etc. And I say, no. Because I never have before. Well the answer to that will no longer be no. Out comes the cannula and Ed is ready with a little square plaster, but not as ready as my vein I guess because blood starts squirting everywhere. Ed slaps the plaster on quick but within seconds blood is trickling out the side and then it blows and blood is spraying everywhere once more. I have never seen anything like it, and Ed is trying to get gauze out to cover it but of course it’s all in little packets that he’s got to get open as he is doing that, blood is spraying everywhere. That’s expensive blood too, because it’s full of expensive drugs.
My medication on the new dose works out to be just under 1,500each time. I know, I asked.
Anyway long story short Ed gets the gauze on and sits and waits, but when he goes to check the first time it’s still going so we wait some more. It’s quite awkward sitting there with someone holding gauze on your arm waiting for your rebellious vein to stop having a tantrum.
Any who eventually it stops Ed cleans my arm up. “Hide the evidence” he jokes and then makes it clear that his biggest annoyance is that he managed to get the cannula in without bruising me, but has managed to bruise me taking it out lol.
Once out of the hospital we went for a cheeky KFC, already having had McDonald’s for breakfast lol. Then headed for home.
I was doing well feeling pretty awake, but had a pretty bad headache.
Oh I forgot to tell you about my dad ringing. Well, he works with Dan so he rang Dan’s mobile to ask about one of the jobs they were doing but of course I had Dan’s mobile. So Dad and I chatted for a bit, you know him just asking how the infusion was going, if I was okay, basic stuff and then I told him if he rings my mobile he will get Dan and carry on with my infusion. Well I guess he wasn’t able to ring Dan straight away because he rings back not long after I have got out of the hospital. It was quite funny hearing his shock when it’s me who answers the phone again lol. Any who, Dan pulled over so he could talk to Fan and then we went and got our lunch. The wait for Dan to finish talking to Dad was killing Kye lol. He had KFC on the brain.
When we got home, I was really wobbly on my feet, I thought my walking stick would help, so grabbed that to help me get to the loo but oh my god, my arm was wobbling like crazy and I looked like a little old lady trying to get down the hall with my legs and arms shaking and the walking stick only highlighting the fact.
But everything went well till we were in bed that night, Dan woke me up all worried asking if I was okay. I won’t lie I was baffled I had a headache but felt fine and couldn’t understand why he had waking me but he said I had had a seizure.
It wasn’t the only one either, I had three in the night, small and they only lasted a few minutes each, but by the morning Dan looked like he hadn’t slept a wink, bless him.
The next day mum came over to stay with me just to be safe. Her and Kye painted some Halloween rocks and played on Snapchat. I even got pulled into it. The Snapchat I mean.
And she brought me a cute little keyring/ bag charm.
But everything went fine no more seizures and I was starting to get a bit steadier on my feet.
Then that night all hell broke out. Sammy had rung me earlier in the day to say, she called Dan because there were sparks coming off some of the wires in her shed, where all her turbine and solar battery controls and batteries are installed and Dan had told her to turn it all off. Which had stopped that problem, but as the day went on she was ringing me more and more upset as the wind turbine was going crazy and rocking really bad in the wind.
Then not long after mum left she rang me in a tight panic because one of the poles that holds the stabilising wires in for the turbine had come out the ground.
Now I am not gonna lie, this was really her fault, as Dan had told her repeatedly that she had to cement those in before the wind got bad and I had reminded her of that too and she hadn’t done it. But what was making the situation worse was the wind turbine was making a right racket too.
So when Dan finished work we rushed over there and there were all ready several other people there, friends and family, helping her keep the thing steady. And it was decided the best thing to do was cut it down. Now bare in mind it was really windy, so they ratcheted the pole to the trees and as they cut through the pole slowly pulled it toward the trees so it would come down safely away from the statics.
Now, the fact Sam hadn’t cemented the poles in was totally her fault but it’s like everything you intend to get to it and don’t and to be fair the weather did change very suddenly. The rest of it was not. The box had blown from being overloaded, but Sam hadn’t been running enough to do that. The whole set up came from the same company and it hasn’t worked right from the start. So was obviously a faulty unit.
What was also stupid was once it was all turned off because of the sparking the turbine had no break so the thing was spinning violently out of control. Surely something like that should automatically lock on the breaks if for some reason you have to shut the system down.
Especially as it is not an easy thing to bring down in strong winds.
Anyhow, nightmare over, Sam is now safely rubbing off a generator and will be giving up her attempt at off grid living, for which we are all greatly relieved and will be going back on the grid.
A lot of us did think it was a bad idea to begin with but she wanted to try it and I respect her for that. Cause I do think it was a brave thing to try to do.
I won’t be fully happy though till she’s all connected. Lol.
And she is not the only one with issues this week. It seems our house as well as are car is falling apart. We had a flood a while back in fact several. As a neighbour had had dogs out to try and kill the rat infestation in his barn behind our house and pretty much drove all the rats into all the houses on our street, it was a nightmare and the rats kept chewing through the water pipes on the back of the dishwasher and washing machine in the night, meaning we woke up to the kitchen flooded more than once, while we were trying to get rid of the bloody things. Well the water sitting there for hours didn’t do the floor much good. We could of claimed on insurance but Dan didn’t want the price going up on the insurance so decide it was fine and he would fix it.
Money though has been tight especially with me getting ill, and lockdown and the car needing loads of repairs. But the main floor is still pretty firm it was just over by the back door that wasn’t fairing great. Yes well yesterday, I was heading out the back door and my foot went through the floor. There is a bloody big drop under our kitchen as we have a big crawl space.
Thankfully I had one foot out and firmly on the steps outside. So I didn’t full right through.
But there is a nice foot shaped hole now and no money to fix it and Dan is still loath to use the insurance cause he doesn’t want the premiums going up or something.
And yes we have got insurance, I know cause I set it up. So it isn’t that we haven’t and he has just told me we have. I know how you lots suspicious minds work lol.
Problem with Dan is he can do these things himself if only we had the money and so he is loath to let anyone else do it.
What else, Kye is still in a bad mood and I managed to find a laptop thanks to a lovely local company. But won’t get it till Thursday/Friday if even then now, what with lockdown. Although I am also wondering if I should cancel it anyway given we now need the money for a new floor. Even if Dan says he’s not letting me do that.
It’s crazy because we have gone from being comfortable financially, to broke this year, so quickly too.
I mean don’t get me wrong we’ve never had bags of savings but we were okay. And always had a bit aside. But with so many things going wrong at once and my body failing and all the hospital trips that’s all changed.
We’ll get it figured out though we always do, it just might take a little minute and at least we own our own home out right and no mortgage.
And we don’t do debt, so no credit cards or anything. So at least that something. When we need something we save for it and that’s what will do now too.
So yeah that’s my crazy week. On a plus note I recovered really quickly from the infusion and I seem to recover quicker every time and I also feel like I have bags of energy which I am hoping is a good sign the Infliximab is now working. Only time will tell I guess.
So that’s it from me. I hope you are all well and safe and coping with the approach of another lockdown okay.
Remember to stay safe and healthy cause the alternative sucks.
Love and hugs
Joss xx
