Blogging isn't for me anymore, I don't really like needlessly blogging about my health for whatever reason. There's also the fact that blogging has become somewhat of a club, its now all fashion or lifestyle etc, and if you're not doing monthly competitions from huge companies, or sponsored posts, you've probably got a lot less interest from outside other bloggers. A lot of it has also turned into vlogging which I'm personally not a huge fan of. Obviously because of lack of subtitles (its not hard guys, at least try). Lots of them don't just blog, but do things over social media. Absolutely sick of people chatting away to their instagram stories. I do wonder who has the patience to listen to someone witter away for 10 slides. At least with written pieces you can skim it.
Everyone whose blogs I used to read have stopped too. Some have sadly passed away but a lot of others have simply just moved on from that time of their life, like I have. The confusing thing is a lot of people just randomly stop, so you have no idea what happened to them unless you're following them on social media too. I'm not sure I'll bother continuing in 2019 or onward, but I won't close the blog. I do occasionally go through it to find something, read an old post about something that happened a decade ago (genuinely a decade, I feel old!) and it's nice as my memory is absolutely shocking.
I'm not doing what I used to do with a run down of each month. Partly because, like I said, my memory is awful. And 2018 has been a weird old year. At times it's gone at hyper speed, and other times you realise things that feel they happened a couple of years ago actually just happened this January or Feb. Also, because I don't have a year of blogs to refer to, I absolutely can't remember what happened in which order.
So.
First things first. I got married! On 14th April, we had the most perfect day. I can typically barely remember it, as so much happened from waking up to going to sleep that night. If I could do it all again, I'd just make the day go slower. They aren't kidding when they say it'll be over before you know it! I was quite pleased with myself for being able to hear and repeat the registrar properly (she was a clear slow, speaker though, which helped!) and during the speeches I had copies of them all to read along, as I couldn't turn to lipread properly at the top table. It still feels a little surreal that we're married, we've been together a little over 7 years now and it really doesn't feel that long at all.
My trusty 10 year old port has blocked with what is likely fibrous tissue. I think I've had one whole course of IVs through it all year, because I'm pretty sure the ones before that were dec 2017, and I pushed myself so hard to make sure I could last until March for my IVs to also work as pre wedding IVs. The one course was a nightmare. The 5 minutes syringe was taking 30 minutes. The 30 minute infusion was taking up to 2 hours. I was so exhausted and somehow it made the side effects worse (I'd have thought with it going slower it would be less or the same, but nope!) My migraines were every day, and the tablets weren't helping much (also not helped with the prescription giving me 6 at a time). The IVs didn't even really work, it took a course of pred to feel human and have an appetite for our wedding. We agreed that after putting through a solution that is supposed to dissolve stuff in the line, and also a linogram which showed that there were no bends or breaks to the line causing the block, it's time for it to be replaced. This was around February.
I'm still waiting.
It isn't totally fair to blame the hospital though. Due to the surgeon being unavailable, it was up to them to find a replacement port surgeon who could take on not just me, but the growing list of patients who needed ports too. In the end they found someone but because he initially works out of a different hospital and of course has his full time job (not a clue what he does) its been a long slog. Even slower for me as I've asked for general. Basically every adult I know has had a port done awake, some say it was fine, others say its a horrible experience. I'll hold my hands up and say I'm a massive wuss and can't do it awake. Full on knock out juice for me. This means that there's a few extra people needed and it takes a while to get sorted. I've had one course of IVs since, in a midline. I was full on saying no to this for 2 months, until someone explained what the nurses called a long line, was. As a child, I had long lines (glorified cannulas, with lines about 4 inches long, i think), and they fucking stung. I also refused to bend my arm for the full 2 weeks, so that made things 10x more difficult. When the nurses started saying I could get a long line, i told them to piss off. I absolutely wasn't doing that again. Eventually it was explained that that's a different name for a midline or picc line. Midlines go up to your armpit, picc lines go to the top of your heart. They're all placed in your arm, but a long line is placed in the crook of your arm, whereas the other two are placed a bit higher.
Well, they usually are. Mine was placed about half an inch from the crook of my elbow at the side. Couldn't bend my arm more than half way, so showers were fun, and I couldn't drive or even button my coat myself. It was also the most itchiest thing I've ever had in my entire life. I itched it so much I broke the skin, through the dressing.
We originally planned to go on our honeymoon in May, thinking of going somewhere like Greece, but because of this absolute arsehole of a situation, we knew we wouldn't be able to book anything until there was some news about my port, and especially as I was originally told it would be replaced in April after the wedding. After repeatedly being told 'next couple of months' for several months, I got fed up and whinged a LOT about how they've basically crapped all over what could have been a great honeymoon. In the end we all agreed we should just book something, and they'll work around us and our (belated) honeymoon. Which means we ended up booking Orlando, Florida, going back to Universal Studios where we had our holiday in 2016, where John proposed. It's not till May 2019, but it meant we would have enough time to save up for the higher cost of universal, compared to a holiday to Greece which was more within our budget.
We did originally plan to stay at the same hotel as last time - an on site hotel, which has the added benefit of unlimited express passes meaning we skip the insane, and sometimes impossible queues that can get to over 2 hours long. The travel agent was sold out of those hotel rooms that day, so we booked a different on site hotel, Portofino Bay. I love it so much, its themed on Italy, with the outside looking like part of the Italian Riviera. This is a slightly nicer hotel than the one we originally wanted to book, and wasn't much more in price that day which was such a bonus. It's full of Italian restaurants too, I think there's around 8? I'm going to get so fat, and I'm happy with that.
It probably sounds odd, but I'm even excited for the plane journey there. It's one direct flight, Newcastle to Florida. When we went in 2016, we went with a different company, so took 3 flights and nearly missed our last flight by seconds, which stressed me so much I felt off for the first two days. Also being awake for over 40 hours and not having proper meals the whole time we were travelling really messed me up too. So this time we found the holiday through TUI and I'm so glad we looked around to find that! Even the flight time is perfect, at 12 in the afternoon. Last time it was 6am, meaning we left the house at 3am. Then the flight was delayed till 9am anyway so that was a great start, obviously.
Some new news which may be a surprise, is that I'm being assessed for a cochlear implant. This is something I spent years not wanting. But that opinion was based on knowing one person with an implant, who's hearing was still worse than mine with two hearing aids. I felt it was such a huge thing to go through for very little. After joining a group on facebook and speaking to a lot of people, I realised how much more advanced they've become compared to 7-8 years ago. The surgery is now only 1.5-3 hours, and they only make a small incision around the back of your ear (compared to the minimum of around 6 hours and shaving half your hair off to cut across your head). People have gone from slightly improved hearing to being able to speak on the phone. I have no idea where I'll land on that spectrum, but I know I'll probably never speak on the phone again. But clearer speech is something I need so desperately, even with family and John, I still struggle to understand what they've said the 5th time in a row. It's an interesting and fast paced process. I asked in late august/September to be referred and I've already had 4 appointments with another in early January. They predicted March for surgery if I was successful through the assessment (all things are looking good so far) but I've asked for it to be after May, so I don't mess up the honeymoon. It takes 4 weeks of healing before they even turn it on, then months of adjustment appointments, hearing rehab and relearning how to hear. Plus you can't fly/go on activity rides for months after while it heals, and some hospitals say you can't go on G-force roller coasters ever again in case it shifts the internal components.
I haven't spoken to anyone with CF with a cochlear implant which is the only downside. I only know one person, and they're either not wanting to reply to the message I sent in august, or missed it. But the cause of hearing loss isn't a huge issue. It's all about the resulting damage. I have basically the same nerve damage you'd get from things like meningitis. So there's lot of people out there who can give me a fairly similar idea.
Some other news I've kept under wraps, I did wonder about mentioning it or not. I GOT A JOB! An actual paying job. It feels insane to say that. It's taken 6 years, being somehow under qualified for entry level jobs, bad luck, and quite a large amount of discrimination, but I finally got there. I'll be doing an apprenticeship in customer services for the council, and a fairly impressive £3.70 per hour for the first year, which is normal for any apprenticeship. But it's still so much more than the 0 per hour I'm getting doing fuck all around the house, with some volunteering (I will miss volunteering though, I've met such a lovely group of friendly people!). Even so, anyone who complains to me about their wage for the next 12 months is getting a hard slap.
I don't think anything else has changed the whole year. There is the fact I only had 2 courses of IVs this year, which is impressive for my own track record. even without changing anything. I started regular 3 monthly IVs when I was 6, eventually having them as needed when I moved to adults (which actually ended up bringing them closer together) and the longest I'd gone was 4 months. There was a 6 month gap between my IVs in march and those in October, although there was a few courses of cipro and doxycycline. That combo works for me so much better than cipro ever did on its own, so I'm glad I have options again rather than simply just IVs. I may need to ask for a course soon though. I went nearly the whole year without getting a cold, and then got one for Christmas. I spent all of Christmas eve, Christmas day, boxing day and the day after coughing so much that my throat is still so sore even after the cold has cleared. I suppose I jinxed myself thinking it was a mild cold as it wasn't that bad until the coughing started. It was that dry cough you get with a cold, so I was pretty much drinking either water or tea constantly.
I don't think I start my job until the 3rd week in Jan so there's still some time to try and clear the cough before I immediately get the label of 'that girl who coughs all the time', which is going to happen anyway, but I'd like it not to be my first impression to everyone.
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