10 years with endometriosis

Here I have an English version on top, and a Swedish one at the bottom.

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When he said ”You may have endometriosis. I’d like to check up on that. It’s not normal to experience pain every day” he was the first one in four years to take me seriously. The average time from when the symptoms appear until diagnosis is settled, is around eight years. My four years was the fast lane.

After being dismissed by midwives, chief physicians, OB-GYN’s, gynecologists and doctors, I finally got the answer I had been searching for. I wasn’t just making shit up or exaggerating the normal standard of “feeling the different phases of your menstrual cycle”. Bah. And somehow, it was also extra annoying that the first person to take me seriously was a man, when all the earlier dismissals had been done by women.

But with the laparoscopy surgery that was suddenly done a couple of weeks late came the surgeon’s opinion; “I really understand that you’ve been in pain”, but with the recognition and the diagnosis followed desperation. When I lay there on my couch, super sore from the surgery and googled endometriosis, I found forums, support groups, groups for family of endometriosis sufferers. No solutions. And then it kind of hit me. I’m never getting rid of this.

Fast forward to six years later, and I’m at the stage where I and my doctor have tried getting me menstruation free for a year, without succeeding. The summer before the last the pains started changing character and I didn’t really keep up. First we tried putting me into the classic chemical menopause but it didn’t work, I still bled but just six weeks apart and lots of it. So I quit that.

The following months were the worst I’ve had so far. It just started off as regular annoying cramps and sort of morphed into the worst pains I’ve experienced. Every 30 seconds pains seared through my stomach and ended up sitting completely still on my couch for two days before I could move around a little. I actually took the following days officially off of work and went home to a friend and sat on his couch instead until Wednesday, when I could move more freely again. It seems my endometriosis has spread into tissues and reacts to bowel moments, ever so little ones.

When it repeated itself the month after I called the hospital crying, and I couldn’t take anymore. I didn’t want to call because the only solution is birth control pills, and I can’t with birth control. Under hormones, I lose everything that is me, the depression comes with all its ugly symptoms of not wanting to see anyone, lose the motivation for anything. The sex life fades and I stop getting in touch with people. The last time I ate birth control pills I felt completely blank inside for three months before I stopped taking and suddenly, life returned to me.

But that isn’t an option now. It’s too bad. I have to treat it with hormones. And the consequences are here. I’ve kept a close eye on it in fear that the hormonal depression would appear again, and even then I somehow managed to miss it. It wasn’t until I realized I sleep 13 hours a day that I got it. It’s here.

My only option is to try another type of hormones but I’m terrified. Right now, it comes and goes. Some days are fine and some days are clad in darkness. Sometimes I look at my new infatuation and feel that something’s missing, and just go to bed because I can’t bother being awake. Other days I’m in love, horny, happy, motivated and hopeful. If I change the type of birth control pills, maybe the good days I have now disappear. Like earlier, maybe only apathy will remain. I don’t know.

And what happens after six more months of hormonal depression?

Sometimes it feels like a cruel punishment, being happy and normal under the weight of the hormones. I fantasize about a little cottage in the countryside with a plum tree, I know that under all this I’m in love like a teenager. The feeling that I won’t get to experience the joy of all this and things to come weighs on me. The hope that I will find a type of birth control that I can handle is small because all the types I’ve tried so far has done the same thing; depleted my happiness.

To live with this asshole disease, I have to snuff out the flame of a life in happiness.

It’s cruelly ironic.  


10 år med endometrios

När han sa till mig; “Det kan vara så att du har endometrios. Jag skulle vilja se närmare på det. Det är inte normalt att ha ont varje dag”, så var han den första som tagit mig på allvar på fyra år. Den genomsnittliga tiden från det första obehaget till diagnos är åtta år, så för mig gick det fort, skrattretande nog. 

Efter att ha blivit avfärdad av barnmorskor, överläkare, gynekologer och vårdcentralspersonal så fick jag äntligen på papper att jag inte bara hittade på. Det var inte bara en inneboende hysteri och hypokondri som jag upplevde. Det var också ett extra litet hugg att alla som avfärdat mig med en handviftning var kvinnor, och att den första som tog mig på allvar var en man.

Men med titthålsoperation, en kirurg som stod framför mig och sa “Jag förstår verkligen att du haft ont”, och den efterföljande diagnosen kom också desperationen. När jag sökte på det, googlade lite på kvällen hemma, så kom stödgrupper upp. Forum. Tillochmed anhörigstödjande organisationer. Det var någonstans där som insikten slog mig.

Jag kommer aldrig bli bra. Aldrig fly detta.

I ett år nu så har jag tillsammans med en läkare aktivt försökt att få mig mensfri, eftersom smärtorna runt mens under kort tid förr-förra hösten eskalerade så pass att jag inte hann med att förstå vad det var som hände. Först försökte vi med nässpray och misslyckades, och sen med p-piller. Uppehållet däremellan är det värsta jag har varit med om. Förra sommaren, när min syster var i stan, så åkte vi till en nöjespark på lördagen. När vi var där fick jag mensvärk, hanterbar. Jag gick hem för att vila på eftermiddagen och sen var det kört. Jag har aldrig haft så ont någonsin, var 30 sekund så skar smärtan genom kroppen. I två dagar satt jag helt blick stilla i min soffa bara för att inte göra det värre. Inte förrän på onsdagen kunde jag vara ute och röra på mig. Min endometrios har spritt sig inuti vävnad, är teorin. 

Gråtandes fick jag ringa gyn och säga att jag inte orkade mer. Jag ville inte göra det, för behandlingen är med hormonella preventivmedel. Jag tål inte hormonella preventivmedel. Jag tappar allt, förstår inte vad som är poängen med att leva, varför jag ska gå i skolan, varför jag ska umgås med vänner. Sexlust försvinner, livslusten ersätts av apati. I mitt förra förhållande spenderade jag tre månader med att inte känna någonting, tills jag slutade med tabletterna och fick livet åter. 

Men det är inget alternativ nu. Det är för illa. Jag måste behandla mig med hormoner. Och konsekvenserna har kommit. Jag har hållit noga utkik efter symtom på depressionen som alltid följt hormonbehandlingar, och trots det så lyckades jag missa dom. Det var inte förrän jag insåg att jag sover 13 timmar om dagen som det faktiskt klarnade: Depressionen är här. 

Mitt enda alternativ är att byta hormonsort och testa något nytt. Men jag är livrädd. Just nu kommer det och går, dagarna är olika. Ibland förstår jag ingenting, tittar på min nya kärlek och känner att något saknas, går och lägger mig för att jag inte orkar vara vaken. Men andra dagar så är jag glad, kär, kåt, förhoppningsfull och motiverad. Byter jag sort kanske allt det försvinner, rakt av. Det kanske bara blir apati kvar. Och vem vet vad som händer efter sex månaders test av tabletter om de tar bort allt jag håller kärt och som gör livet värt att leva? 

Ibland känns det som ett grymt straff, för jag vet att under tabletterna så är jag lycklig. Hoppfull. Fantiserar om ett torp på landet och är kär som en tonåring. Men det är inget jag kommer få uppleva ostört i fortsättningen som det ser ut nu. Förhoppningen om att jag ska hitta en hormonsort som inte påverkar mig på det här viset är liten, eftersom alla har gjort det.

För att kunna leva med min sjukdom, så måste jag lägga en filt över livslusten.

Det känns grymt ironiskt.

Should I break up with Instagram?

One of my favorite medias on the internet, second after the blog, has been Instagram. It’s been something that’s just nice with Instagram. Pictures posted by people on the fly, or pimped out ones taken with DSLR’s, which ever. I could find anything, follow interesting accounts and put up my own material there. I can still do this, but it’s heading south as fast.

I have bitched about this before but it’s time for it again, sorry. When I found out that Facebook were buying Instagram, I was genuinely disappointed. I know what happens when Facebook get their hands on things; It turns to shit. Because even though I do understand the whole idea with the social media method of capturing people and getting them to spend even more time on there to get as much commercial exposure as possible, I think that Facebook has refined the annoying elements of this business plan to the point of uselessness.

Facebook in itself I use only because of groups and events. The rest is unusable because of all the spammy crap that’s added to my feed. Now, a couple of years into Facebook owning Instagram, it’s started there too.

I got angry yesterday when I finally realized that my beloved Instagram is ruined. I once again got a push notification about a user answering a comment on a post that I had commented on. The problem with that notification, and all the other ones I get at least once a day, is that the poster isn’t answering MY comments, just other people’s comments. Why do I get a notification about that? I’ve looked through the settings, there’s no option to shut that shit down without shutting the notifications on when people actually answer –me- too.

The Facebookification in its most useless form.

Of course, the whole thing started when they introduced the algorithms that are supposed to sort my feed for me, which makes me miss out on things I actually want to see but it’d had to fly because I had no other options.
But yesterday, in the fit on annoyance, I went through my feed and did a count. Every seven post is an ad. If you then add the algorithm that sorts FOR ME (hah), the “Recommended”-posts, “Suggestions”-posts, “Look, here’s the stories that you willingly skipped out on a few seconds ago!”-post, the things that I actually WANT TO SEE is totally drowned out – my friends’ posts!

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Oh...

I have complained before, but I do think it’s done now. I can’t handle it, it’s too much stuff clogging up my feed. For God’s sake, there’s an ENTIRE TAB just for posts from people I don’t follow, why don’t put that shit there instead of people cutting into sand or mixing glitter into slime? I would GLADLY go into there often to check and see if I could find something new and exciting to follow, but now that shit is forced down my through in my feed instead, when I just want to look at my friend’s pictures.

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But why?

It’s just too difficult for me to get what I want out from the media. This may sound like a trivial problem but Instagram has been my most prominent space on internet since 2010. I’ve had a blog in different forms since 2005 but the mobile medias are obviously much more popular among people in general.

But if I lose Instagram, what do to then? Will I make it with just my blog? Will I be lonely?

Oh, Facebook, you assholes. Why did you have to do this to us?

Changes to the Elletist household

Yes. The excitement is total. Within a short period of time, chaos will ensue in this little apartment. Because if I’m lucky, I will get a shelf system from Ikea delivered to my home this Friday! It’s the classic Ivar that’s gonna make an entrance in my life since the 80’s, and I’m ex. Cite. Ted.

Because it’s not only three shelves, no! It’s a creativityinspirational, administrative, personalizational (yes, making up words so excited!) all around solution for my home life. It’s gonna be tinted in a antique brown shade and get adapted to my needs, and only mine! Computer and books are moving in, a work surface where I don’t need to clear things away in the middle of the process because I need the surface for something else will be installed, and will encourage me to get a little planlessly creative. Maybe even some space for dinner parties will fit?? And of course, it’s has to meet the needs for this advanced household of 28 square meters. Ahem.

Life changing of course. Or am I putting too much into this?

We’ll see.

I have done an idea draft anyways.

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The New Years Revue

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Yeah, here come a thorough walk-through of the year 2017!

I got my own apartment. That is all. Thank you, thank you.

No okay, but it’s almost true. It’s been a calm year, and it’s been in my taste. I’ve gotten to know new wonderful people, been moved to tears by loved ones, made a fool of myself, celebrated life, gotten my own apartment and worked. And gotten a little drunk now and then. Perfect! Now we throw ourselves out into the unwritten void that is the new year and see what it has to offer.

The Christmas sacrifice

You’re supposed to show your best sides around Christmas it’s said, and give of yourself. People give money and presents and to charity. But I would like to direct your attention to my sacrifice.

I got a huge blister cutting the rocky road candy for the Christmas celebrations with my family.

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I'm not gonna lie. I feel a little closer to Jesus now.

A tattoo

We kept on building on what’s going to become a full sleeve filled with old stuff this Thursday, and I do believe it was the worst tattoo session so far for me. I DO HAVE a chest piece that took 11 hours split in three to finish that I bit through, but this little measly 1.5 hour session was TORTURE. I don’t know if it’s my age, if I’m going ill or if it’s just that bad around the inside of the elbow, but it was worse than being carved on my breast bone. Gosh.

I screamed when it was like a minute to go and told the tattooer that WE’LL FINISIH THIS LATER ON I NEED TO END THIS NOW. A year ago, I tattooed an owl in the exact same place on the other arm, completely in color. It took almost four hours to make, and I sat through it and surfed my phone. It sucked, but it wasn’t THAT bad.

I guess I’ll have to sacrifice a garlic laden potato croquette to the gods before next session, I have so much more I want to get done!  

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Stencil setting.

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No. Do over!

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The stencil stuff is potent.

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There! 

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Terror!

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Ugh.

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The only piece that isn’t done are the little triangles at the bottom of the picture. That’s all that got left. My poor tattooer stared at me like “COME ON ELLET GET YOURSELF TOGETHER” but I had already made up my mine, haha.

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Having plastic on the first night is soo good. 

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Tada!

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The motif is straight up taken from an iron age picture stone from Vallstena on Gotland. The couple is in the real form of a little Viking age “gold man” from Ekerö, a tiny little 9 mm golden sheet with the pattern imprinted on it. Love it!

We’re putting on some space fillers and then continuing up the arm later on, when I dare do it… I need to grow a vagina and just do it.

The mighty Christmas Wreath

The creation of this wreath started when my ex-husband and I bought a house with a HUGE 1970's style fireplace in it, and when we neared the Christmas season we naturally needed a wreath that matched it's bricky hugeness. 

I measured and we needed a wreath that was one meter wide! 

One day a little later, my then husband came home and surprised me with a decoration free wreath that my mother in law had put together, so nice! But.. with me being picky, and with it being just a tad too big, I disassembled it, tightened it a little and then put it back together. 

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When it came to decorating it, I rummaged through my collection of stuff and decided on a colour palette of gold, copper and brown! I did test-lay everything on before I fastened it because I do have some sense of self preservation.

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First of all, the lights went on, 80 or 120, I can't remember.

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Then I test-placed all the things. 

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Fastened them with pipe cleaners (sticks so good to the branches) or linen string. 

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Tweet! 

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Then I put it up and it looked like a mini on the huge fireplace, but this was the best fit anyways. The 70's fireplace makers knew what they were doing, that's for sure.

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Oh hooly night, the stars are brightly shiiiiiining..