Categories Blog Health Memes & Asks Personal

Feeling Weird Now… the friday five for August 27 2021

I’m having one of those weird days. Alternately being cold and sweating with certain of my Crohn’s symptoms acting up somewhat so can’t go far from the bathroom and my head still feeling a little left over worseness from the migraine yesterday but also feeling weirdly energetic anyway. All my household chores are done, don’t have any vacuuming or washing to do… It’s so weird feeling like this. Can’t seem to concentrate on anything (even reading which is something I can usually do no matter what) and am sort of feeling like I’ve been gently wrung out and then left hanging the wrong side out… lying down feels weird, sitting feels weird, walking outside feels good but I’ve already done that twice today and it’s only 10am… So have answers to old The Friday Five questions.

1. If you could design your life exactly how you’d like, how famous would you be?

Not famous at all! I wouldn’t mind people recognizing my name in certain circumstances such as a patron of something that people associated with the organization in question would know me, but I don’t want to be famous or a celebrity or anything like that.

2. How often would you travel?

Do I still have Crohn’s Disease and chronic migraine? If yes, propably not a all. Except maybe for travelling abroad to try out treatments for migraine not available here.

If not and money’s not an issue (because I’d have all the money I could want – because if I could desig my life as I like because then I’d be rich…) I’d like to make one long trip (like 6-8 weeks or more) a year to some place I’ve always wanted to see – like visit the US/Canada and travel across the country cost to cost, seeing places like Niagara Falls, Yellowstone and Grand Canyon, New York, Miami, Los Angeles, Boston, Rocky Mountains, and many many more places. These trips would have loose plans and I’d take my time seeing all the places I want. Or alternately I’d make 1-2 shorter trips a year for maybe a week at a time, such as to Cairo or London or Paris, or even just a few days in London whenever I liked. London’s one of my favorite places in the world, and I’d love to be able to go there whenever.

3. How many people would live with you?

I’d live alone, but I’d buy a big house and have staff come in to clean and maintain etc. I’d also have a cook so I could eat proper meals every day (I prefer home cooked food, but I don’t have energy to cook regularly) and because I feel quilty if I don’t eat the food others have made for me (I have problems with appetite, made worse by being chronically tired and too often after I’ve cooked, I’m too tired to eat and/or am not hungry anymore), especially the greens and vegetables. I’d propably get a dog, maybe. I’d have to think about seriously though whether I could be a good dog mom with my illnesses and tiredness.

4. How often would you eat out at restaurants?

About once a month or every other month. I like eating out (fast food doesn’t count here) but more as a treat every now and then.

I’d be likely to do a lot more, is cafes! I don’t do cafes now at all really. Like once a year, at the most (and none during COVID-19). They’re either much too expensive, or what you get for your money isn’t that great. But I’d love to spend money in the few cafes I like, just watching life around me and meeting a friend or my Mom.

5. What new hobby would you get into?

I’d probably want to try many things because I’d have the big house where there’s a craft room or two so now I’d actually have the space to do a lot of things I don’t have the space for now, or the money to buy materials to just make them for fun, or to just try out without knowing whether I’ll stick with it. But it’s the lack of space that’s the big thing. I’d like to try jewellery making, and making acrylic rings, acrylics coasters and clocks. I can’t now because I don’t have to space to store the needed tools and materials, or have space to leave my work out to dry etc. I’d also do large versions of the things I can do now: watercolor and acrylic painting. I got to do some woodwork when I was a kid in school (woodwork was for boys, while knitting and sewing was for girls, but boy and girls had to switch around for a few weeks one year to get some experience from the other side), and liked it, so I’d like to try that again. It’d also be fun to learn to make clothes, so I’d pay someone to teach me or take classes or something. I don’t own a sewing machine, and when I looked into prices of fabrics some years ago, buying fabric to make a sheet, or a t-shirt or whatever, cost just as much or more as buying one ready-made so it doesn’t make sense now to spend money on a sewing machine.

I’d definitely want to own my own (computer) server! So I’d be able to have as much space I want/need for my sites, and still be able to make sure the server is powerful enough to serve the sites fast. So it could be pricier than what I can do now.

Health Update + Hot Weather + Jeri Ryan Site
Categories Blog Health Personal Rant

Health Update + Hot Weather + Jeri Ryan Site

God I miss winter! Hence the picture. It’s from Pixabay.

Heat wave

Heat wave is not much of a  wave anymore – something that comes and goes like in summers of the past. More and more they just come and stay ๐Ÿ˜• Summer’s barely started and we’ve already had 21 heat wave days this year ๐Ÿ˜  Today’s going to be the hottest day so far in my city, 31 Celcius. It’s not yet 10am, I’ve already had the fan on for hour and I’m already so done with today, it’s already much too  hot… how the hell am I going to make it through the day? I’m on the very edge of a migraine attack and my head feels nasty, and there’s noise outside in the distance and sometimes closer that sounds like maybe the grass cutters will come around. Hopefully not today, those drivable machines make a horrible noise and my head really, really can’t take it today, and I’d have to close my back door and windows to make the noise bearable which would make my apartment feel like that there is no air because it’s so hot inside.

Health

In the Finnish Crohn’s Disease Facebook group there are people there whose symptoms worsen a lot during hot weather. I haven’t noticed this myself before, but the last few weeks it’s been a tiny bit worse. But my symptoms vary enough, come and go, that I can’t be sure. Just that this latest while of a little bit more active symptoms happened simultanously with the hot weather.

I haven’t slept in about three weeks now. Part of is the hot weather no doubt, but mostly I think it’s my iron levels… namely the lack of them. All I get is about 30 mins of sort of maybe kind of lousy sleep, that doesn’t feel like I slept at all, totalling about 2-3 hours. Mostly I think it’s because my ferritin is still much too low, close to zero, and the last time I slept this badly, the ferritin was about the same as it is now. I slept much better when it got over 30, but when it was 43 the doctor said I can stop taking iron  every day and to only take it during my period. I’ve read that IBD patients should have ferritin the minimum of 100, but the doctors here don’t seem to know/believe that. 43 is the highest mine’s ever been, and that lasted only about year – as soon as I stopped taking it every day, it came down to 9 (and CRP was 14 so it propably was/is closer to zero actually) within the year.

Now I’ve taking iron again since November, but it’s got up only to 21 which is what it was for a decade at least and that’s when I had so many bad sleeping problems. Not to mention terrible tiredness. Tiredness has never gone away, but sleeping was so much better for a while when the ferritin was around 40. I hate that the doctors ignore ferritin so much here, they don’t really know about it or believe that ferritin actually does anything, and that ferriting being 15 for women of childbearing age is totally okay! (Their own Doctor’s Handbook states that ferritin under 30 is empty and needs to be fixed but somehow that doesn’t count) But that it’s bad if men have it so low because their ferritin is apparently supposed to be like 150 or more ๐Ÿ˜ฏ  Iron infusions are almost impossible to get unless you go to like one of the about five doctors in the entire country (who have private practices) that understand about ferritin and do infusions if oral iron supplements don’t help, or you can’t take them. If you pay out of pocket for everything, of course. Even IBD patients who aren’t supposed to take iron orally by the Doctor’s Handbook are told to take it orally and if they can’t, well too bad! Never mind your quality of life, and never mind if literally the only things you can do is go to work and sleep, because you’re so tired all the fucking time. Only extreme cases iron infusions are used in treating IBD patients. I bet if men had systemic problem with low ferritin it’d be taken seriously in the public health service and by doctors in general  ๐Ÿ˜ 

Jeri Ryan Site

This past week Claudia, the owner of I Heart Jeri Ryan donated her content to my Jeri site, because she closed I Heart Jeri Ryan down due a personal loss. She has some things that I don’t and it’d have been such a shame to lose them. So I’ve been uploading her things (and will continue to do so in the coming days, as I go through Claudia’s things), and I’m happy to see my Jeri gallery now even more complete ๐Ÿ˜€ 

Categories Blog Health Personal

New Dishwasher + Health Update

Image from Pixabay

New Dishwasher

I’m getting a new dishwasher!!! My 23 year old dishwasher finally gave up the ghost yesterday! We bought a new one today, and it’ll be delivered tomorrow :mrgreen:  I can’t wait!! My old one has been a faithful one but I’ve wanted to buy a new model for the last 8 years or so because they have cool new features the old one didn’t, but couldn’t justify the cost when the old one was still working normally. (I come from a family that doesn’t buy new costly things until they break.) Had to replace my washing machine last July which was 30+ years old in last July, and still crazy in love with my now no longer new washing machine ๐Ÿ˜€ I feel silly being so excited about a new household appliance but there you are!

We decided that instead of waiting for the fridge to break, we’ll aim to replace later on this summer. It’s also 23 years old, makes too loud noises sometimes… probably normal for an old fridge, but they sound too loud to me because I’m sensitive to sounds due to my migraine. It’s the one I’ve wanted to replace for more than a decade now but money’s always the issue and haven’t been able to do it because it still works. But hopefully now this time we can stick to the plan!

Health update

Continued to sort of have an migraine attack yesterday, and still today though less so. It’s been a long run this time, going on five days ๐Ÿ˜ก I’d like to be able to point to a particular thing and say “this is the reason” but I can’t. There’s been nothing out of ordinary going on, not really. I did have some stress from mid-May onwards due to having to prepare and leave in formal applications for KELA to handle and all that stress resolved on last week’s Monday. So too early to count for this longer than my normal run of bad migraine attack days.

KELA made a negative decision on my disability retirement application yesterday. Which, expected. Still, disappointed. And a little suspicious – the stated time it’ll take to make a decision is up to three months. And that’s how long they took in 2018 with my last disability retirement application. But this time they handled it in a week and a bit! Doesn’t seem enough time to me to do their due diligence. KEVA hasn’t made their decision yet. I wonder what happens if they say yes? Apparently it’s rare, but it’s happened. The retirement pay KEVA would pay me isn’t anywhere near enough to live on, so it’d be complicated and probably more of a bureautic headache than a save!

And I can never spell propaply probably, no matter how many times I mistype it!

 

Categories Blog Health

COVID-19 Vaccine Update

Picture from Pixabay.

Thought I’d post my experience with the COVID-19 vaccines now that I have gotten both doses.

I belong to the first medical risk group, and got my first vaccine (Astra Zeneca) in February, and the second last Wednesday (Moderna). Today is Tuesday the next week. I’m in Finland.

  • The Astra Zeneca only gave me a very slight sore arm for about 1,5 days. Nothing else as far as I could tell – I have chronic migraine/headache every day so I can’t say for sure if it gave me a headache or not, but I don’t think so because there was no headache that differed from my usual in the following days.
  • I had the following reactions to the Moderna vaccine starting last Wednesday (the vaccination day) through yesterday:
    • Chills and hot flashes on Thursday
    • Slight fever Thursday through Saturday
    • Very sore arm Wednesday through Sunday (bad enough that sleeping was uncomfortable for three nights)
    • Small slightly swollen, red circle on the injection site Friday through Sunday
    • Headache through Thursday to Saturday. I know this because the headaches responded a lot better to medication than my headaches normally do.
    • All in all: I felt sick for 2 days (Thursday and Friday), kind of sick for 1 day (Saturday), and then only had a slightly sore arm on Sunday and Monday anymore
    • Today I’m back to normal

I can’t remember whether I had any bad reactions when I was a kid but this was the worst reaction I’ve had to a vaccine as an adult! I usually just have a somewhat sore arm for 2-3 days, so this was a new experience for me!

Categories Blog Health Personal

Health Update

  • Got my second COVID-19 vaccine today! First one was Astra Zeneca in three months ago in February, this second one was the Moderna one. Didn’t get side effects apart from the usual sore muscle in February, soon I’ll see what happens with this one!
  • Saw a neurologist last week because my migraine symptoms have changed – they’re often in a new place now, and in February, I had the very first aura I’ve ever had. So far it’s the only time. We’re gonna try to bump up Propral (depends on whether I can handle without fainting because if affects blood pressure) to see if it helps. If not/not enough, we have a plan in place to try Aimovig, the biologic, starting in January. I have to keep a detailed migraine diary the rest of the year to make sure I qualify for Aimovig.
  • So I’m cautiously optimistic because Aimovig, but it’s also it’s my last hope as it stands now – if a biologic doesn’t work, there’s nothing left to try and only maybe menopause can improve my migraines then.
  • Having problems with Ferritin since last summer. Started taking iron in November by January the ferritin had got a little better, just about as much as could be expected for 2,5 months. But in April’s labs, no change from January  ๐Ÿ™ I’m so damn tired all the time, I’m starting to run out of patience with the shitty ferritin!
  • Applying for disability retirement again, my doctor already sent it the doctor’s thingy (can’t remember the word…) needed and now KELA just needs an application from me. I filled it in online, but need to write up a txt file too because all my illnesses and their various effects were too much for the allocated number of characters allowed in their online forms. Gonna do that tomorrow or day after. I do love that this can all be done online – the last time I applied I had to download a pdf, fill it in and then either upload it via the message center along with an extra txt for the same reason or print them and send via snailmail. Now the application itself is fillable online too ๐Ÿ˜€ 
  • Both my doctor and I think that I probably won’t get the disability retirement now either (they are too strict about it if you are unemployed when you become disabled; it’s an acknowledged problem due to prejudices about unemployed people) but that it helps to build a history about doctors -thingies- showing you are unable to work and applications even if they are rejected. Black on white, medical history and history showing you’ve haven’t improved even with rehabilitation etc. so at some point it’ll get accepted, even if it takes years and years.
  • The 300 days of long term sick leaves will run out at the end of June; if I don’t get disability I’ll have to return to unemployment benefits which is really stupid because in reality I’m not able to work, and that means only extra work for the unemployment agency and more stress for me :_( But there’s no other place for people who run out of long term sick leave and don’t get disability ๐Ÿ™