Tag: personal

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!!! 😀 

Posted on
Feb 24, 2022

J. Herbin Fountain Pen Inks

I’m so in love with several of the J. Herbin inks that I’ve been inking my two JInhao X750 pens with only them the last three or four months 😀 I didn’t expect to love them as much as I do – they’re my favorites along with Pilot Iroshizuku inks.

Image by J. Herbin

I bought six colors in international standard cartridges (they come in cute little tin cans! colors in the regular line shown in above image) instead of bottles just so I could give some of each color to my Mom – who relies on me to give her inks because she goes through ink a lot slower than I do, and doesn’t speak English so can’t order them online herself – and also, just so I would have some cartridges I could just snap in, especially if I’m out and about, instead of having to deal with filling from a bottle. I’ve also found I love using up cartridges – I seem to finish them faster than converters, and feel accomplished every time I do!

I’m totally in love with Violette Pensée and Rouge Caroubier, so much that I used two cartridges of both in row which is unusual for me, I usually want to switch inks when a pen runs out. Also love Corail des Tropiques and Rouge Grenat just may be my favorite dark red. Admittedly, I’ve only used them in the two Jinhao X750s so I don’t know how they behave in other pens, but in these, the these inks flow perfectly 😀 Especially Violette Pensée is delightful – so cheerful yet calm and a pleasure to write with, I always feel happy when I’m writing with it 😀

I’ve been trying to get Rouge Opéra and Orange Indien cartridges along with a few of the other J. Herbin colors while doing my last few online orders, but they seem to be out-of-stock every time 🙁

I don’t like majority of blue inks because they remind me of those cheap pens you can buy anywhere/work gives you which would dry up on after a couple of weeks of use. So blues even by makers such as Pilot Iroshizuku though they write excellently and might even sheen or shade, I still find boring. The association is just too strong. I seem to be favoring reds, pinks and violet inks along along with some teal ones. I have many reds/pinks and a few violets I love, but only three blues I even like: Pilot Iroshizuku Kon-peki, Organics Studio Copper Turquoise and my newest find Robert Oster Fire & Ice – at the moment I’m very much into this last one. I only have a sample of it, but definitely want a full bottle at some point down the line. Fire & Ice is a pleasure to write with and look at 🙂

Posted on
Feb 21, 2022

Notebooks

So, wickedlittletown over at Dreamwidth had the idea to take photos of favorite notebooks… here’s mine!

My favorite size is A5, I love A4s as well but I don’t need large ones like that very much anymore.

EDIT: added Notebooks 5 because I forgot two important ones!

Notebooks 1

My functional, every day type of notebooks. The top row are all by Nikki Strange; the two A5 ones I use for making quick notes while at doctors, or at the unemployment office etc. The A4 one I use when I need to write a lot – usually assignments given at a rehabilitation program or some such. These do okay with fountain pens (at least the inks I’ve used on them so far) but don’t show sheen/shading, and very wet inks/wet pens might feather on this paper. But I’ve found it acceptable so far.

The bottom row are my most used notebooks. The first one I made myself, inspired by Lotus Blu Book Art‘s watercolor notebooks. I printed an image bought off on Etsy on cotton rag paper, used that as cover and 52gsm Tomoe River paper for the paper. It’s a simple pamphlet stitch, which I learned by following Lotus Blu Book Art‘s video tutorial on how to do it. It takes about 15 minutes so it’s really quick! This one is my inked fountain pens log – whenever I ink a pen, I use that pen to note what pen it is, what nib and which ink. This way I have examples on how the pen/nib/ink combo looks on 52gsm Tomoe River, and can easily reference back if I love or hate some combo.

The green one is a hard cover Rhodia Goalbook, which is for various record keeping and tracking – books read, new books I’ll want to read in the future, online orders I’ve made and am waiting to arrive, ink bottles I have, ink samples I have, vacuuming dates… all sorts of stuff that I can’t rely on my memory for. It’s an okay paper for fountain pens, but doesn’t show sheen/shading as well as Tomoe River or Oxford paper (below).

The last one is my most used notebook – my illness log. I log and track my symptoms here every day. It’s a hard cover Oxford Black n’ Red, it’s thin but surprisingly heavy notebook. It came in a pack of three, and I’ve almost filled the first of them up and I’m very glad I have two more waiting to go. It takes fountain pens beautifully, shows sheen and shading well; it’s my favorite paper right after 52gsm Tomoe River. It is rather boring (just white, lined pages) and because the content which I write is always neutral or bad it started to make me feel bad, which led me to pretty it up with stickers (MU print on stickers) and washi tape. So now it’s looks very nice, with pretty ink, stickers and washi tape. And now I’m happy keeping this particular log.

More behind the cut!

Continue reading Notebooks

Posted on
Feb 19, 2022

The Friday Five for February 18, 2022

Answers to yesterday’s questions at https://thefridayfive.livejournal.com/200499.html

1. Do you have Spring or Fall allergies?

I have some sort of food allergies and an atopic skin condition but nothing that is only seasonal. It’s always been year around thing.

2. Do you have something in particular that you are allergic to or is it just general?

My allergies used to triggered/worsened by certain foods (citrus fruit, chocolate etc.) but even when I avoided them, I always had rashes on my arms and legs year round. The rash would get better during summer as long as I got to swim in the ocean a lot. Then since I reached my 20s, it’s been just general allergy instead of specific foods and very mild and mostly only on my fingers. I still have to treat my skin with hydrocortisone creams fairly regularly when it flares up (only a few times a year instead of daily like when I was under 20), but still daily with emollient cream to keep my skin moisturized.

3. What do you take, if anything, to help?

I don’t need oral supplements for my allergies, luckily. Looking back, as a kid, I could have used something that reduced itching but I was never given anything orally – I don’t if such meds existed then in the 70s/80s? In any case, I’ve never been treated orally for my allergies. Only various creams, and this blue tincture which was used to “paint” the rash bits and which I loved because it eased the itching and made my rash skin feel cool (it always felt hot) 😀

4. Do you seem to be saying, “It’s just allergies” a lot more than usual these days (i.e. because of Covid)?

Nope.

5. What do you hope to get out and do this spring, allergies and pandemic willing?

Not so much “to get out and do something”, but I’d love to not have to wear a mask while grocery shopping/in the library. I hope it’s possible this spring/summer again like last year, and I’m looking forward to it so much! I hate wearing a mask – it fogs up my eye glasses and that messes up my depth vision (a problem going up and down stairs/getting on and out of the bus), makes my face sweat like crazy and my nose run. And if I’m having a bad headache day, it’ll start a migraine attack or makes it worse if I already have one on. So not having to mask up in the spring/summer is one my wish for the near future.