- Have been on long sick leave again since beginning of July, due to migraine and Crohn’s Disease issues
- I had a colonoscopy today. My Crohn’s Disease symptoms remain restless for the 9th month now despite increases in medication and a course of a new one, so we wanted to see what’s going on with the bowel. It looked good, the Doctor said, but need to wait for the results of biopsies for final word. Currently, barring something surprising in the biopsies, there’s no cause to start biologics or change main medication. I might benefit from a IBD speciliased dietician’s help, so I’ll see one as soon as they can make it happen. Also should try taking a supporting medication at a different time of day, at a different dosage. And lastly to talk to my doctor who oversees my Diabetes treatment about finding something other than Metforem – apparently that’s a bad one to use on IBD patients (and I’ve noticed that it can have some stomach issues in the mornings) and that there are newer tablet format medications to try. Used laughing gas for the first time during the colonoscopy as sedation, and it went well 😀 I’m much feeling much better than with the previous sedation used, have much more energy and pretty much feel like normal. Good thing also is when laughing gas is used, is that one doesn’t have to stay for observation for a couple of hours after, or have somebody come pick me up and stay the rest of the day and night with them. So thumbs up all the way! 😀
- Having a third day of unstopping migraine attack. Went to the ER because of it on Sunday evening, worried and scared because of the need to do the awful bowel prep on Monday, and wouldn’t have been able to do it as I was – physically feeling ill and weak, and also strong likelyhood of throwing up the required prep drinks (2 litres of Moviprep + 3-5 litres of additional clear liquids of my choice) which would make for a failed colonoscopy. The ER staff were all very understanding about the issue and managed to get me down to where I could do the prep alright. It went pretty easy actually this time, except for the constant pressure in my had. Although in the last 3 hours or so of the prep the migraine changed from awful pressure in my head to a typical hard headache on temples/forehead. Managed to then get that down early this morning when I finished the prep, and now just waiting to see what it will do. It’s just on the cusp of going bad again or subsiding. Hopefully it subsides! *fingers and toes crossed*
- Have been so terribly tired the last week and then the three day migraine – I really hope things are looking up now! I could use a change of pace.
- Haven’t been much looking at my sites because of all that in the last week updates wise, but I did change to a new host, last week I think it was. Everything seems to be okay on that front 😀
Saw my doctor yesterday, and she wrote me sick leave for three months 😀 Whether KELA will approve it or not, that’s a whole another thing but at last I don’t have to worry about for three months that the unemployment office will try to force me to do something I can’t do without making my health worse. And I also got answers to my other questions and a few minor worries, and first step onwards about getting my eyes examined as required by having Type 2 Diabetes and the occasional weirdness that been going on with my eyes. That’s all good! 😄
I’ve been loving the weather the past four days ☺️ It’s been all lovely cool, cloudy and rainy! Feels marvelous 🥰 (I’m serious, btw – this is not sarcasm).
Fountain Pen Stuff
I’m getting impatient, waiting for my Tomoe River paper order to arrive from Japan – estimated arrival time was June 26, but no sign of it and Amazon says sorry for delay. It’s been a little over a month on the way, and I know COVID-19 slows things down… but I wanna make booklets, lots of booklets! I promised to make one for my Mom so she can use the Pilot Metropolitan fountain pen I gave her, but I can’t until I get the paper 🤦
I got my order from https://www.penstore.fi today ✨ I ordered three Pilot Iroshizuku 15ml ink bottles – Tsutsuji, Momiji and Kon-Peki. I love the little glass bottles 😍 Kon-Peki is the first blue fountain pen ink that I enjoy – all the others I’ve tries have been so boring! Only problem is… now I have to wait until I’ve used up one of my four currently inked fountain pens… and then the problem will be… which one of the three new inks shall I choose next??
It’s the third heat wave week here, and I’ve been dealing with it better than ever before (even than when I was healthy!) this year – last night was the first night I felt like the heat didn’t dissipate inside after sundown. And so it was too hot to sleep – I was able to lay down only for about 4 hours, and I do think I dozed off but none of it was proper sleep. So now I’m feeling like a zombie. Good news is that Sunday should be the last truly hot day, Monday should be warm and then onwards as far as the prediction goes, 20 degrees Celcius or below, which these days to me is cool. I can’t wait! 😀 *dances happily*
First off, I’m so done with migraines! My everyday non-migraine attack headache has been at 5 (out of 10 where 10 is the worst pain I can imagine) for the last 1,5 weeks, and the last two weeks, I’ve had a migraine attack every two or three days in addition :/ My sleep schedule is all out of whack because either the migraine won’t let me sleep either because it hurts too much to stay in sleep so that I wake up about once an hour. Or I can’t even try to sleep because the hurt worsens when I lie down 🙁 I’m running out of patience with this bullshit.
I started using fountain pens two years ago. My first one was Pilot Metropolitan Retro, with an F nib, and turned out I hate it. I thought it was the nib, but I’m not sure. Think it’s the barrel actually. Feels too small in my hand and cold and smooth. I like all my other fountains pens just fine. Second fountain pen I got was Lamy All-Star and I like it a lot, I now have two of them, Vibrant Pink and the new Turmaline. I’m currently using M nib on both All-Stars, but I also got a 1.5mm stub and I’m going to get an F and maybe even an EF to see if I like them. I also have PenBBs 267 and 323, and I like them, especially after I switched an M nib to the 323. Also got two TWSBI Ecos – Pink and Mint. The Pink is M nib and the Mint is a Broad nib. Oh, and also Parker IM Premium which I think I would love, but it dries up in seconds when I try to use it. I find myself reaching for the two TWSBIs Ecos the most lately – I used tothink all the TWSBIs are sooo ugly, but I’ve come to enjoy their look and I love how smoothly they write. The Mint is Eco-T and I like the different grip more than I think in Eco.
I’ve also looked at the TWSBI Diamond 580 series, especially the Purple and Emerald Green, but I can’t justify the price and quality compared to Ecos. Seems to me the quality upgrade isn’t significant enough. Until TWSBI announced the new TWSBI Diamond 580 Smoke RoseGold II. It’s even more expensive than the regular series Diamond 580s, but I’m drooling! I may have to use some of my tax return in August to buy, if it’s still around at the time. It’s just so gorgeous!
My country Finland has declared a state of emergency because of COVID-19 starting today (March 18, 2020) until April 13th. I’m okay so far but I belong in the high risk group because of three of my chronic illnesses or their medications, and in addition I’ve been having a Crohn’s Disease flare since early January so I have been mindful already the last few weeks, and will continue to take as many precautions as I can going forward to avoid getting COVID-19.
Right now, I’ll continue to update sites and making wallpapers etc. as normal, but should I disappear for a bit, it’ll probably have to do with COVID-19 and/or Crohn’s Disease.
The nationwide shutdown of services is going to be weird – due to my illnesses, I don’t go out much because I don’t have the energy and my migraine is ofteen too bad or it would make it worse, but still! I’m used to going to the rehabilitation activity and talking to people, as well as to library every week and always having at least a few new books to read! Now I’ll have to resort of e-books, which is a huge relief that they exist! I think it’s also think it’s going to take a toll, staying home because I have to, not because I want to and not having face-to-face social contact. (I live alone).
My Mom is 75 and her SO is 80, so they’re both also in the risk group and they have some illnesses. I’ve been trying to talk them into either taking advantage of their neighbor’s offers to grocery shop for them, or to do grocery shopping via the internet and have them delivered home. So far, nope. They think they’re ok going to the shop in the off-peak hours ;/ I might be able to talk my Mom over to online shopping, but she said even if she did, her SO wouldn’t. He’s stubborn.
Also it’s kind of scary, being in a national state of emergency, when I think about it! The last time that was declared was WW2. So it’s a whole new thing. Although I did consider during the swine flu, remembering the bird flu and liking The Walking Dead and movies about epidemics, that it was only a matter of time until outbreak big enough to cause societal interruption would come along. So it’s not a total surprise, and I feel like I’m at least a little prepared, mentally.
Health update after a long while.
I’ve been flaring since early January, with my Crohn’s Disease symptoms somewhat worse in general but getting out of hand particularly when I’m on my period. I had my yearly Crohn’s Disease control labs and doctor’s appointment in the university hospital on February 3rd. There’s inflammation in the bowel and I’m not surprised because of said increase in symptoms, but at least for once it happened right when I had to have the labs done anyway, so didn’t need to do anything extra! The doctor upped azathioprine back to the original dosage and added in cortisteroids for three months because azathioprine takes that long to start to have an effect. Labs every three months and in August I’ll hear if the inflammation has improved. If not, the doctor said we’ll have to consider starting a biologic.
I don’t know yet whether cortisteroids has helped the inflammation any, but I’m certain it’s made both my chronic migraine worse as well as my sleeping problems. Because headache and sleep problems are among the many side affects listed, and both have gotten very much worse in the two weeks since I’ve been taking it. My basic, daily migraine headache pain has gone from 3-4 to 5-6, and I’ve averaged obly 3-4 hours of sleep a night for 1,5 weeks now, not all of it even continuous sleep. I’m having trouble both getting to sleep, and staying asleep, and I’m having a lot of dreams again. These two things are currently really making my life hard. I’m not sure whether I should be in contact with the IBD nurses – the last time I was on cortisteroids, I was in bad enough shape with the migraine and sleep that I didn’t feel any additional effects regards headache or sleep from cortisteroids, or just didn’t have them. But now that both my daily migraine has been somewhat better and especially sleep has been a lot betterer, although not good like it was when I was healthy…. this now feels very hard to endure, and I’m not sure whether I’m supposed to or not? I’m also a little worried that the side effects won’t go away after ending cortisteroids. It was a long road to decent sleep, and I despair thinking it’s gone away again 🙁
So far, I have missed one rehabilitation day (with a doctor’s note) out of three because of the flaring, and would have missed more if there hadn’t been a break in rehabilitation for most of January. I have a rehabilitation day tomorrow (Wednesday), I’ll see how it goes and the rest of the week and then maybe contact the IBD nurses if I still feel as bad? Maybe I actually should be on sick leave?
If I go silent for a while, and don’t make any updates, my health is why. I’m so tired I made an incredible number of spelling and wrong word mistakes while writing this, hope I caught most of them!
Other thoughts... it feels really strange to be finished with capping Star Treks DS9, VOY, TNG and TOS! (Never have had plans to cap ENT or early seasons of VOY, so I’m in effect finished except for new eps of PIC and DSC) Feels like there’s this huge hole now because the need to cap them has been in the background for like 20 years. Good thing there’s Picard, and Discovery. Also, this is the first time in my life when I have ready and easy access to currently airing Star Trek. That feels so weird too!
I’m enjoying Picard a lot, I love the slow, considered space that gives the characters time to breathe! I’ve always loved Romulans, so I’m happy to have much focus on them. And I love that we’ve been getting glimpses of life on Earth, and civilian life too. I don’t think any other Trek ever showed more than brief glimpses of that and it was always with guest-stars, too. And I squeed when 7of9 beamed in in the last few seconds of episode 4 – she’s been missed!
I just got back from the ER where I had to go early this morning because of the migraine. They managed to knock it down back a lot – not completely to get rid of it, that never happpens at anytime – and I’m currently feeling better. But it kinda feels like it might flare up again in hours/days because the sunny, hot weather will continue at least for the weekend and so there’s just too many triggers. So in an effort to avoid it going bad enough for another ER visit to become necessary, I’m going on hiatus.
I might do some Tubmlr edits or wallpaper stuff if I feel like it, but no fansites will get updates until I’m feeling I’m out of the immediate danger of it flaring badly.
Today’s been awful, had a terrible migraine that didn’t want to go away and I’m still worried that it might come back during the night or tomorrow. I’m worried because I’m going to have a routine colonoscopy again on Wednesday (first time in 4 years!), and I need to do the fun fun fun! “empty the bowels” prep tomorrow. Which means drinking about 4,5-6 litres of liquids which I think I won’t be able to do, or at least, won’t be able to keep down if the stupid migraine is on :/
This colonoscopy is just to see what’s going on because my symptoms have been stable the past several years and I haven’t needed to have one done because bloodwork also looked good. Bloodwork still looks good, but due to increased chance of colon cancer with Crohn’s Disease patients, colonoscopies need to be done at regular intervals even when symptoms or bloodwork don’t necessarily warrant it.
The prep and the colonoscopy itself usually wipes me out, so I won’t be online much (or at all) tomorrow and Wednesday. If there are any problems with the sites, I’ll get on it ASAP but propably not before Thursday.
I getting up on 300 days of sickeness allowance at the end of this month (300 days is the maximum; after that one has be fit for work for at least a year to re-qualify again for the same illness) because of my migraines.
So now I’m applying for disability pension/temporary disability pension now. I never thought until a couple of years ago I’d ever have to do that this young (I’m 43). Disability pension has become notoriously hard to be approved for the last decade or so, propably tens of thousands of people are kept on unemployment despite them, their doctors and the unemployment agency knowing full well that they are not able to work. But insurance doctors think otherwise, without ever seeing the patient. So I’m not at all sure I’ll be approved. If not, I’ll join the ranks of people on wrong damn benefit.
It’ll take them about 2-3 months to process my application, keeping fingers crossed!
I’m not even sure I truly want to be on disability pension but that’s really the right place for me untill and unless the migraine gets a lot better (and doesn’t get worse again when trying out working or whatever). And it would be mentally much better than being on unemployment and feel like I’m not hanging in a loose noose. As long as I’m on unemployment but not able to work in reality, it’ll be stressing because you never know what the TE-toimisto will think up like unpaid work. And things have been going really badly for the unemployed (and just generally the poor) the last several years while the right wing politicians are in power, and they have still more bad changes in the pipeline for the unemployed.
But yeah, I never thought I’d be here when I was younger!
It’s been a miserable summer since May. It’s been hot nearly all the time – both “hot-for-me” and legitimately hot, and it just seems to be getting worse and worse. Yesterday was 32 (Celcius), today it’s promised to be 33 with no cloud. I just barely made it through yesterday, today stretches long and torturous in front of me. It’ll feel like dying.
I can’t even think of tomorrow yet.
It’s promised to stay well above 25 for the next 10 days, but hopefully that gets adjusted downwards to something more normal as the days go by.
My migraine is bad and getting worse, and also I’m feeling just bad overall due the bright sun and the constant heat. I’ve reached the limit of my ability to stand the heat for this year, and now it’s taking all I have to just exist. I don’t know that I’m able to work much on my sites or anything online until the heat is over. So this is your Hiatus warning. It things go well, I’ll be back to normal later this month but it may just as well be end of August or early September before I have energy for anything beyond surviving. Totally depends on the weather now.
I’m writing this at 5.30AM and it feels weird. I’m not a morning person (at all!) but these days mornings are the only time of day I can breathe and feel normal for a couple of hours. That’s when I have to do all the household work and grocery shopping and such right now.
Hey Finnish Summer, I’m ready for you to go back to normal! Cold and gray, rain and all!