#vimizim

[littleroma]

I fell asleep during the infusion today for an hour. I think in my defence I had just finished watching the end of Bodyguard and I was 😱😱. If you get a chance to watch the show, you most definitely should. It’s so good. I’m probably going to dream of the show tonight! That or the documentary I was watching about the buried secrets of Istanbul.

Strange dreams tonight!

[littleroma]

Vimizim Week #46

My mood has been a bit down lately, some of it stems from last week (all the stuff from the last few weeks if I'm being honest has just solidified into a massive ball of crap) but life goes on. Whether or not we won't it to, life goes on. Anyway, on Friday we were contacted about moving up the infusions to a Monday on a more permanent sort of basis, so excluding weeks when I have have hospital appointments on Mondays, the infusion will be on a Monday. For some reason, a number of the clinics I currently attend, are held on a Monday, so there you go. It will be on a Tuesday the week of the 16th October, because I have a hearing or throats clinic, I'm not sure. My wee brother left for uni on Saturday morning. I really miss him and I didn't think I'd miss him as much. Does that make me a bad sister? I'll see him again in six weeks, he is home for his birthday and a concert, it will be the longest I've gone without seeing him since he was born. It will my first birthday without him (I'm six years older than him) in two Sundays, so that will be odd without him. I've been exiting him, I think he's struggling as well, the wee guys he's rooming with doesn't understand his accent. People always seem to struggle with the Northern Irish accent, we just talk fast. I could make some comment that I haven't cried yet, up I'm tearing up now just thinking about him. He isn't dead Roma, just gone to do a Law degree at Durham! Have to keep reminding myself of that. Then I got a weird comment on one of my fics on Sunday, that I wasn't sure how to take. Because for one thing was this person simply yanking my tail or whatever? I posted about it yesterday, so if you saw it you'll know what I'm on about. It's probably made me lose a bit of confidence in my writing, but I was probably always heading to that point. Oh well, I'll maybe take a few weeks break from posting anything, until I feel I can breathe again. Sorry about that. But I feel like I need the extra time to settle my anxiety before I start to put myself out there a bit more. As much as you can put yourself out when writing behind a screen! Has anyone seen the new Star Trek series? Brilliant. And the new Designated Survivor? Netflix just got interesting to me again! I'm going to the Lady Antebellum concert in Dublin on Thursday night yay!

I'm thinking of making these updates a brief overview of the week I just had versus the week coming up, it's gonna be busy! Let me know what you think about this

[littleroma]

Vimizim Week #18

Wow, this was the eighteenth Week of Vimizim. It started a bit later today because we mentioned to the nurses that I was starting to get itchy sore bit or hive marks on my legs. So the nurse gave me an antihistamine and we had to wait half an hour for that to go down before we could get hooked up to the Vimizim. Once we did though, the antihistamine kicked in within about an hour and I fell asleep. I was so sleepy and right now I can barely keep my eyes open. So afterwards I watched The Princess Bride because I've never seen it before, read the book sure but not seen the movie. And an episode of Quantico (the second in the first series) and then an episode of Iron Fist (the fifth I think). And any writing I did today was really hard because I couldn't process the sleepy quality of the antihistamine quick, still feeling sleepy at the dinner table. It was like trying to walk up a hill in molasses! I'll link the new bit here in a minute. We googled the drug today and worked out that in the United States Biomarin charge $1,068 per vial. So I take ten at a time, so that's $10,680. But it's making me feel better, so it's worth it. The pricing probably differs a bit in the U.K. But the company is a US based one... My younger brother was painting a flag, his school has got through to some boys rugby final so he was painting the name of the school onto the Irish Tricolour. My bedroom is on the ground floor in the same space as the utility, back door and garage door so my bedroom is probably fumey tonight. I feel sick, I've turned the lights on so I can sit up if I need to but hopefully the sickness will pass soon. Eugh I feel like I could be sick. Here's hoping if I am that I can get Dad to come down, I usually crack up if I start vomiting. Sad to hear about Martin McGuinness today, yes he was a leader in the Free Derry part of the IRA for years but he was later a treat politician. He was the SF's negotiator for the 1998 Good Friday Agreement which bought the peace we enjoy here. He was the first Education Minister, showing he was able to fight for anyone regardless of their political or religious background. He was later the Deputy First Minister here for many years. It was interesting because you had so many being completely bitter about his death, which I mean I can understand. But bitter to the point where they were denying his statesman role as a peaceman. Armalite to ballot box indeed. It's interesting thinking about it.

[littleroma]

I don’t know if anyone remembers but about two to three years ago I was posting a lot about Vimizim and what it was doing for me. I’m still on the drug, I got my last dose yesterday. I’m still loving the drug, even though my veins are playing up a bit.

But today, I made the decision with the nurses to cancel the treatments for another three months. It’s in case a nurse comes in who is carrying coronavirus but not showing any symptoms and I get sick. We heard today on the news that at the hospitals they’re only accepting people on a frailty scale if they get sick. I don’t completely understand this scale, but I do know that I don’t meet it, being young. If I should pick up COVID-19 they won’t accept me into hospital and I could die if it gets bad enough.

I didn’t want to have to make this choice, but I don’t want to run the risk of getting sick because I want to live. I haven’t been outside in just five weeks and so far I’m alright. I haven’t started to get cabin fever but I do feel lonely.

Hopefully, in twelve weeks (that’s how long it will stop for) this COVID-19 won’t be as big, bad and scary. I’m trying not to cry here because it’s scary, but please guys for me and the people like me who are socially vulnerable please do what your health authority is telling you to do. This virus will not stop at the elderly but guys take precautions. I don’t always trust politicians, because hello Johnson you’re a dick, but please listen to the relevant health authorities in your area.

We can beat this, I have to believe that we can. It always seems darkest before we hit the dawn and I don’t think we’ve hit the darkest part yet.

Stay safe guys, wash your hands, try not to panic buy

Roma

[littleroma]

3 years ago I started Vimizim!

I don't know if you guys remember but three years ago today I started on a drug called Vimizim. I have a rare genetic condition and I was waiting a long time to go on the drug. I was thinking today about what I have managed to achieve since and thought I would list a few;

Six weddings, I have read more and more books, I have fallen in love with another wee doggy called Luna, I have started writing a book, I have started listening to podcasts, I went to a charity gala dinner this summer, and so much that I’m probably not thinking about

[littleroma]

Bullet Journal Goals

I’ve finally got my diary for 2019, I know it’s a bit late, but I’ve been setting it up and trying to work out which pages I want to bring forward and which I am happy to leave in the past.  I think I need to start doing future logs at the start, rather than waiting until say September comes that I note I have an appointment.  I want to do another resolution page, but maybe call it goals?

 I do want to be a bit more driven next year; I’d like to you know to start writing more and learn a few languages.  Thank you DuoLingo!  There are some other things I’ve got floating around in my brain, and until I start, I don't know which to bring in.  In any case, it’s a mystery!

 Anyway, I feel like I’m falling asleep at my desk and just past quarter past eight.  There’s no way I’ll make it until midnight; I normally can’t stand NYE, so no skin off my nose!

 If I’m happy with how these bullet journal pages turned out, I might post a few pictures of them here over the next few days.

[littleroma]

The Great Sickening

This week has been a bit of a busy one.  Last week I had a sore tooth, the same one I had a few weeks ago in my upper right jaw, and Dad is away at the moment on business.  Mum can’t get me into the dentists; there’s a big step up in the office and steep stairs up.  So I could hold on, but I was almost crying brushing my teeth on Wednesday, it genuinely hurt that much.

 On Monday of last week, I ordered a new armchair for my bedroom, feels a bit odd to order seats for the bedroom of a wheelchair user!  Argos promised next day delivery, but the armchair didn’t arrive until Saturday morning.  Companies based in the UK look down on those of who live in the North of Ireland, you’d think we lived surrounded by thousands of miles of insurmountable oceans.  Fecks sake, if the Vikings and later the English managed to conquer these lands, you’d think a few shops could get their GODAMN DELIVERIES IN ORDER!!!!

 I also booked tickets for Dad and me to go to London, it worked out as cheaper to book two separate flights, so from Belfast to London then London to Belfast rather than a roundtrip.  BA left it almost five days later to take the money out of my account.  So I knew I didn’t have a lot of money left, but I couldn’t see how bad I was until the money had been taken out of my account.  BAH HUMBUG indeed.

 So, Dad ended up booking me an emergency appointment at the dentist if one of my uncles could take me.  Thankfully my uncle was able to, and it turned out that I had a small cavity and my front veneer was chipped.  Owwie, I ended up getting a filling done, with at least five tools sticking out of my mouth at one time.

 I had to run to the ENT afterwards; I was almost falling asleep in the testing booth, I was completely shattered.  Mum had to pick up dog food afterwards and again I almost fell asleep in the back of the car this time.

 On Friday, Mum and I had to run out to Boots to get a few Christmas presents, and I wanted to try an electric toothbrush. Before we went out, I took a bit of ibuprofen because my wrist was sore. Ibuprofen seems like a strong medicine compared to my usual Paracetamol.  In Boots and Marks and Sparks, I felt sick.  You can see where this is going right?  I was told to try Gaviscon for my cough and had been assured that it wasn’t going to interact badly with my painkillers.

 We were really hungry by the time we left, so we decided that it made sense for us to pick up some dinner going home.  Namely a chippy.  About an hour after eating I started to throw up.

 Bit of an eventful weekend right?  Hopefully this week will be a bit quieter,

 Roma

[littleroma]

The Great Tidy Up

This week has been a bit of a quiet one.  I should probably preface this by saying that last Saturday (not the Saturday just past but the one before) I had the flu jab.  Then on Monday, I had the infusion like normal (2 years, WOOHOO) and then on Tuesday, I had blood taken.  I feel like a bit of a pincushion!

 Yesterday, I took it into my head to clean my room, with the help of Mum I pulled everything out of my desk drawers and found plugs that were still wrapped up.  I had to be ruthless and think to myself that if I haven’t used something in six months, it’s going.  Tomorrow, we’re probably going to tackle my shelves, which I’m dreading.  I love reading so I have plenty of books, only I haven’t been able to hold onto proper books in about ten years, so I’m going to have to donate them all to the charity shops.  This is going to be hard. You can’t tell, but I’m crying on the inside.

 Because of me doing this, I’m starting to look at other things, like the TV shows I have recorded on my Sky Box.  I haven’t found much enjoyment in watching programs like ‘The Flash’, ‘Arrow, ‘Supergirl’ or ‘Legends of Tomorrow’ in a long while.  So I think I might delete them all from the recording feature.  There’s no point in taking up disk space by recording something that I don’t enjoy, right?  I used to love ‘Arrow’ but not so much anymore; I feel like Olicity might have trashed the show.  Hear me out but I feel like Felicity Smoak’s character could have been doing so much more than being paired with the broody one.  ‘Legends of Tomorrow’ was good but a bit far-fetched.

 I think I might delete it; there’s no point in keeping something that I don’t watch anymore, right?  Same with Chicago PD and Chicago Fire, I can probably get away for a while without watching them.  The only program that I liked out of that stable of programmes was Chicago Med, and I think I only like it to shout about what they’re doing wrong.  I may not be a medical practitioner, but I have had enough health problems to be able to see when something doesn’t look right.  For example, tie up your hair and wash your damn hands!

 Now, that I’m just thinking about deleting them, I feel good about myself.  I don’t feel as overwhelmed anymore.  Hmm, I think I’ll do it.

 Anyone who knows me, knows I’ve got far too much crap, so next year I’m going on a No-Buy (except for replacements) with regards to makeup. That means that unless I can seriously justify that makeup palette, I won’t buy it.  At the moment it looks like I will only have to replace mascara, eyeliner and foundation. Everything else I think I’ve got enough. But I’ll maybe keep you posted if I remember that is!

 P.S. I don’t want to keep writing about Niamh, because she will going in for treatment, but I don’t want to make myself cry again.