Posted on
Mar 20, 2022

The Friday Five for March 18, 2022

Answers to this week’s questions at https://thefridayfive.livejournal.com/201437.html

1. What does the outside of your house look like?

It’s a four story apartment building, in a circle with 3 row/terraced houses, of the type where the hallways are open and unheated, and the front doors opens directly to outside. It’s red and white and there’s a tower housing the lift and stairs to stories 2-4.

2. Which room do you spend the least time in?

Technically: the sauna (I only go there to vacuum).

3. Which room do you spend the most time in?

But I guess these two questions mean “living space” in which case my answer is I spend roughly 50% in the bedroom and 50% in the kitchen/living room. I have a small apartment with only the bedroom, bathroom and the sauna as their own rooms (they have doors). The kitchen and the living room are one continuous space with the entry to the apartment along with a tiny foyer/hallway with just enough for shoes and outdoor clothes rack and two tall cabinets to the side. My kitchen table is a meter from from my living room couch. So I don’t have choice where to spend time in, especially since I try to dedicate the bedroom only for sleeping (and reading real books).

4. Is your home in a convenient location?

Yes, very.

It’s only 15 minutes (25 minutes during rush hour) to the city center by a bus that goes by every 7 minutes during work days for most of the entire day, and in addition there’s also three other useful-to-me bus lines going past my building every hour – one of which is a service line directed especially to older people and those the sick or have challenges in moving, but everyone is welcome to use it. It’s just slow. It goes to a on hospital on top of a big hill, a couple of different department stores at opposite sites of the city and goes through many smaller streets that normal bus lines don’t, and it also picks up and lets out people between stops unlike the normal busses. It takes an hour to get to the city center using this bus, versus the 15-25 minutes on the normal bus. It’s usually less crowded than normal busses, and drivers drive much more gently and smoothly, and are more quick to help if you need help getting say, a wheelchair inside or off.  And also there’s also a school bus line for those who have young children that goes by my building but not having kids I obviously don’t have experience about that. And the bus stops going both directions are literally in front of my building!

There’s a small shopping center a 5 minute bus ride away (15 minute walking distance for me) with a good shop for everyday groceries and such, as well as a post office and pharmacy which I’m real happy about because I have to get things from the pharmacy several times a month, and my packages arrive to that post office so it’s easy for me to pick them up whenever I’m doing my regular shopping. I mainly use this small shopping center for all my needs.

There’s two big department stores by different chains 5-8 minute car or bus drive away, and the only negative thing is that the big department store I prefer (because it’s cheaper than the other one) isn’t reachable by one bus but needs three and takes half an hour one way even though by car it’s only 8 minutes away. Back when I had a car I shopped there 2-3 times a month  – it was nice to do the big weekly shop there, and then do small additional shops/pharmacy runs in the small shopping center near me. Now that I don’t have a car and depend on the busses I use the other more expensive one, but luckily it’s in a bigger shopping centre with a satellite library, pharmacy, SpecSavers and other eye glass shops, many shoes and clothing shops, and shops like Clas Olsson, and smaller specialty shops like a shoemaker who fixes old shoes and bags and things and cafes and restaurants so usually if I’m shopping for those things, that’s where I go.

The city library has two mobile libraries which drive around all around the city every day. One of them stops 2 minutes away from me on Thursdays. The only down side of the mobile library is that if you have books on-hold waiting to be picked you can only do it on Thursdays for 30 minutes, so at some point I switched mostly using the main library in the city centre where I can pick them up at any day and which is open from 9am to 8pm on work days, and less but still 6 hours on Saturdays and Sundays. But I could get by only by using the mobile library if I wanted to!

It’s also convenient that my GP and laboratory and one of the hospitals (there’s two hospitals I need to go to both of which are easy to get to without needing to go through the city center) are on the route to the city centre, along with my hair dresser and the art supplies store where I buy acrylic paints etc.

My Mom also lives fairly close to me – when I was healthy, I’d always walk to her place and that’d take me about 35 minutes. I’ve always walked rather slow, and when my Mom, whose always walked fast (except those years when her Beagle was still alive when she walked her pace and that was slow because you, Beagle and her nose), walks over to my place, she takes about 20 minutes. So at a normal walking pace it’d probably take somewhere between those times. Maybe someday I can go back to walking to Mom’s again. Now I take the bus, and so have to go through the city center.

So yes, my home is located very conveniently! Everything I need frequently is at most 30 minutes away by bus. It’s such a good location that every time I’ve thought of moving, none of the apartments I’ve looked at have come to even close to being as conveniently located as this. I’m really spoiled as far as access to busses and convenient shopping/pharmacy/post office goes! And I didn’t even plan this when I moved – I only checked that a bus went by three times an hour and that there was a shop close by, and that this was close enough but not too close to my Mom’s. It’s been very pleasing to realize once I got ill and need for all the hospitals and labs and doctors came into the picture, that I could get to them easily and quickly.

All this and I don’t even live in the city center, but in one of the suburbs with greenery around me, and even a couple of working fields.

5. What is the color of your front door?

It’s white.

Posted on
Mar 18, 2022

Friday 5 for March 18: Take me to the old playground

Today’s questions over at f.riday5.com. Image from Pixabay.

1. When did you most recently swing on a swing?

A few years ago, before my Mom and her SO sold their summer place. Before they sold it, they had a three-seater swing and Mom and me would sit in it swinging for hours and talk about anything and everything. But they’re both getting old and don’t want to have as much things that need moving/putting together/big storage space anymore, and that swing was cumbersome to move and store so they sold it with their summer place because it was an easy way to get rid of it. I’ve personally never had a backyard big enough for any kind of swing, and even if I did, there’s nowhere to store it for winter in an apartment building.

2. On what issue have you teeter-tottered?

Whether we (Finland) should join NATO or remain neutral. Especially since Russia’s war on Ukraine but also before the war. (I’m not sure… Did I understand teeter-tottering correctly?)

3. How close is your residence to a park, and when did you last visit?

Parks are not really a thing in our family. So much so that I don’t actually know which park is the closest – there aren’t any that I can think of within walking distance even though I’ve lived here 20+ years. We have smaller and bigger woodsy areas all around with smaller as well as bigger walking/running/skiing paths and glades, just not parks that I can think of. I also can’t think of when I last visited a park – probably when I was a kid? I’ve gone through while walking or cycling, but we’ve never really gone for parks for outdoor activities/to spend time in my family. Our trips have been usually to beach, or to the castle ruins, or back when I was a kid, to our camping area. Some of them might be in a park/adjacent to a park, I guess, or the trip there takes us a through a park, but it never really registers as such for me because the park isn’t the destination. It’s just grass and green and maybe some flowerbeds and benches somewhere.

4. How capable are you with a charcoal grill?

Not at all. I’ve never used a grill – have never owned one, charcoal or otherwise. It’s not allowed in my apartment complex.

5. With what are you playing hide-and-seek?

Hmm, I’m going to say creative energy… some days it’s just gone, while other days I’m happy to play in Photoshop or physical drawing/painting for hours. Really, just energy in general…

Posted on
Mar 16, 2022

Iron Infusion

I was given the iron infusion yesterday 😀 It went well, no allergic reaction or anything! The only problem was the nurse had trouble finding a vein (which has been happening more and more for the last year) and the first vein she did find “broke”. It took her a little over 15 minutes to find a vein that worked, at the back of my right hand. But then it all went well! The infusion itself took 35 minutes, and after I had to stay in for observation for half an hour… the whole thing took 1,5 hours all in all.

Now I’m just waiting to see what effect the iron infusion has one – so far no change in head ache, exhaustion or anything else. But the nurse did say that it might take a couple of days before I’ll feel any change, and I’ve also read many, many accounts of other people’s experiences and know that there might a big change, a little change or no change at all. And that things like fever, even worse exhaustion and headache are all possible in addition to good changes while the body processes the wow, there’s suddenly lots of iron! I also know that many people have also needed more than one infusion because their iron deficency is so deep and has lasted a long time (years/decades). So I’m watching with an open mind and cautious optimism 🙂 

Posted on
Mar 11, 2022

The Friday Five for 11 March 2022

Image from Pixabay. Because I love Beagles and there’s very few things sweeter than a sleeping Beagle.

Answers today’s The Friday Five questions over at Dreamwidth.

1. How many hours a day/night do you usually sleep?

This wildly varies… 0-18 hours. I have waves of insomnia when I don’t sleep at all for up to four days, and then when I can sleep, I’ll sleep for close to 20 hours straight only getting up to take my meds and use the toilet. My sleep quality is bad; a lot of the time I have trouble falling asleep. And in any case, whether I do have trouble or not, I keep waking up at least every few hours, sometimes even twice an hour. I don’t ever wake up refreshed and rested. Sometimes it’s all due to Crohn’s Disease symptoms, other times due to migraine/head pain, and yet other times there doesn’t seem to be any reason that I can tell. I’m always exhausted.

I do know that I need 12 hours of okay sleep to feel somewhat rested and human. If I get less, I feel like a corpse. Also, when I sleep very poorly, I see lots of dreams and feel like I’ve lived another life in my dreams instead of rested. The dreams are always the kind I like to watch as tv shows and movies: action, adventure, scifi so at leas they’re fun to have.

I was tested for sleep apnea and I don’t have it, although the test was done during my worst time of insomnia and I felt like I maybe sort of slept for three hours that night, so I’m not sure how they could tell. But that’s what they told me.

I so miss the years (before I got sick) when I had no trouble sleeping, and always slept well! It’s been bad for more than a decade now. I’ve read that iron deficiency can cause sleeping problems, so I’m cautiously hoping the the infusion next week will help with this!

2. What do you do when you can’t sleep?

Depends – is it my first night? I might read or watch tv, maybe write thought dumps in my journal or paint with watercolors, or color in coloring books. If it’s been going on for a while already, I lay in my bed in the dark and quiet, and just rest. I’ve found if I do this, even if I can’t actually sleep, I’ll feel better the next day.

3. How often do you devote time to just thinking about something?

I suppose this happens naturally at some point every week. I don’t usually have to plan it since I’m just at home and can do whatever I want whenever I want to/need to. If it’s something with external pressure, like filling in a complex application for rehabilitation or something else that requires thinking of all the reasons why I should be approved, and how to word them most effectively, and how to show my motivation… those are the times I devote special times to think about and plan, to make a draft. I always try to do it with time to spare, so I don’t have to rush and because these days, due to the exhaustion, I often can concentrate on intense thinking only for a short time, like 30 min, before I’m wiped out. So I do it over several sittings.

4. If you had to choose one person to never talk to again, who would you choose?

There’s no one I know I’d be okay never talking to again without a reason for a break-up in the relationship. So it’d have to be someone I talk casually to but don’t know personally. Maybe a cashier in the shop?

5. If you had to choose one person, NOT your significant other, who you would speak to every day for the rest of your life, who would you choose?

My Mom!

Posted on
Mar 1, 2022

Health Update – Iron Infusion!

Image from Pixabay.

Had my yearly check-up with my gastroenterologist yesterday, and he finally decided, after personally following my struggle with iron deficiency for about three years, that an an iron infusion is indicated in my case, even though technically I don’t fulfill the requirements of VSSHP (my hospital region) My hemoglobin is ok right now (six months ago I had anemia), but my iron is currently 38  (30 is empty/no iron in cells at all so 38 is really bad) and it took me over a year to get get to that from 9 (normal rate is 5-10 a month with oral supplements, if it worked like it should, it’d be 60 at minimun. And it keeps plummeting immediately if I pause the supplements). I’ve been hoping for an iron infusion for at least five years!

IBD patients are recommended to have at least 100 even in literature, but talking to other Crohn’s patients here, it’s like that ruling doesn’t exist and majority seem to have levels between 2-50 and doctors say it’s okay and normal 😐  It’s also notable that practically every one of these patients I’ve talked to is a woman – there’s been like 2 men, and dozens of women.

I’ve personally been struggling with low iron/hemoglobin levels for 20 years now… and probably long before because I would faint/almost faint during my period despite not having that much pain, and my periods used to be heavy, but I didn’t know anything about anemia or iron deficiency until 20 years ago when I first had to take an oral iron supplement for more than a year because of iron deficiency. Then after, I kept having to take courses of them every year, and still my hemoglobin would plummet. I was even admitted into hospital in 2008 because my hemoglobin was dangerously low (the nurse who called the lab results said that I must to come to the hospital right now at 8pm, because if I got into an accident I might bleed to death just because my hemoglobin was so bad). That hospital trip is the time from which all my health problems started one by one.

Iron deficiency is a very controversial medical issue here, with general consensus among doctors basically being that it doesn’t matter, only anemia matters. Only  a few doctors think good iron levels are important in general, and even fewer think that good iron levels are possible for IBD patients, and if necessary,  to treat IBD patients with infusions regularly if they are not. To tell the truth, I’m not even sure my gastroenterologists would have paid as much attention to my iron levels if I didn’t always bring it up with them in each yearly check-up and complain about the exhaustion, headaches, brain fog etc. So now that I’m going to get an iron infusion “to see what it does” and “if your levels get better/stay up”, I feel like I’ve won a small battle! He said that it’s going to be a small infusion (which I guess is better for in case there’s side effects, but may not be enough if the iron deficiency is serious and/or has continued for years). But small is better than none, so I’m happy! And very curious if it’ll do anything to my daily background headache.

Otherwise, other labs are mostly okay – AFOS is a tiny bit elevated and needs to be followed to see how it develops, but he said there’s no reason for alarm yet.  ALAT and AFOS (both labs are to do with the liver) are checked every three months anyway, and we’ll keep doing that. ALAT has been acting weirdly the last year or so – it used to be elevated (but tolerated because of the meds I’m on) but suddenly the last year it’s been anything from 25 to 72. So it’s been going up and down a lot. He couldn’t really explain it. Just that if AFOS stays elevated, then MRI needs to be done because liver related diseases are relatively common in IBD patients.

But the really big thing yesterday was the iron infusion news 😀 They should send the invitation letter for the infusion inside the month. I’m happy and excited and also a little anxious because anaphylactic shock is always possible… but mostly I’m excited! This has the possibility to improve my quality of life a lot, if it helps with the exhaustion!

Oh, and wanted also to mention – I only had two actual migraine attacks in February! Ajovy does seem to be working!!! 😀