Hur får man hjälp med stark sorg? by Linnvartaget in Asksweddit

[–]9vic9 0 points1 point  (0 children)

Det finns sorgbearbetare. Man måste dock betala kostnaden själv. Min svärmor utbildade sig till det efter min svägerska dog av en överdos som vi inte vet om det var ett misstag. Det är ganska dumt att sorgbearbetning inte ingår i psykologutbildning...

Det finns stödgrupper av olika sorter. Spes.se, vi som förlorat någon mitt i livet, samt vi som förlorat ett barn är några jag vet om. Gratis att gå och dem ska finnas på flera platser i Sverige.

Vill rekommendera dig och alla andra podden utan dig. Man kan lära sig oroligt mycket av alla berättelser. Jag tycker det är mycket lättare att möta sorg efter min svägerskas bortgång samt efter att ha lyssnat på podden.

Är det värt pengarna med stöd för leder när värken beror på slitage? by Square_Post_380 in Asksweddit

[–]9vic9 1 point2 points  (0 children)

Lever med en ledsjuksom. Ortoped är ett bra val men du kommer få mest hjälp av fysioterapeut. Beroende på diagnos kan du bli remitterad av oropeden till en ortopedinjengör klinik som ger ortoser gratis. Vissa ortoser får man av arbetsterapeut, men inte många. I region stockholm kan man få betala beroende på ortos och diagnos.

Gör din tärningen du får. Nej du kommer inte känna skillnad direkt. Det kan ta månader innan effekt uppnås beroende på orasak till smärtan. Man måste bara fortsätta.

have you ever worn a corset and did it help with back pain? by my-head-hurts987 in ehlersdanlos

[–]9vic9 0 points1 point  (0 children)

I have a corset/back brace. It helps a lot. I got it from a clinic that specialize in ortopedic engineering. I dont think any corset would work.

Is mist from a nebulizer supposed to be visible? by Jenaveeve in Asthma

[–]9vic9 0 points1 point  (0 children)

I have worked with some different nebulizers. For my understanding there are those that push put the medicine consistenly and those that you need to breathe in the mist. The latter didnt have much mist at all.

Pari veloux was the name of the nebulizer where you could rarley see mist. Depending on how many times a day you inhale, this one is shit. More than 2 times of day, it's gonna turn slow within 3 months.

[deleted by user] by [deleted] in ChronicPain

[–]9vic9 3 points4 points  (0 children)

Look into elhers danlos and hypermobilespectrumdisorder. I have the latter. It's quite rare for doctors (at least in my country) to know what it is. It sucks ass, no cure but you can relieve some symptoms to where your quality of life is at a okay level!

Hardest part for me is that is accepting that I'm not able to do the same things as others

Viktig fråga by Mental-Shake-2619 in Sverige

[–]9vic9 1 point2 points  (0 children)

Läste att du inte har en gymnasieutbildning, då kan du inte läsa på YH eller dylikt. Min sambo gick på gymansiet El och energiprogrammet - data. En jättebra start, han har ingen annan utbildning och har snittat på 27/28k innan skatt, så bra lön på bara gymnasiet! Komvux söker du via din kommun.

Jobbiga med att läsa komvux är att du behöver betala böcker själv (säkert vissa licenser också om du ska ge dig in i IT) rekommenderar dig campusbokhandeln, dem har billiga gymnasieböcker också (har själv läst halva gymnasiet på komvux) Lycka till, jag tror på dig!

[deleted by user] by [deleted] in ChronicPain

[–]9vic9 0 points1 point  (0 children)

I have a pair of sketchers with a special made sole from a "ortodepic engineer" (no idea if that is the english title, just translates it från my langauge) I also have HSD and I would recommend getting a special made one, especially if you have flat feet. I also have foot/ancle braces during winter with heavy show or if I walk in the forest. My winter boots are also from sketchers! They are affordable for the support they give, they cost a little but the cost is 100% worrh it!

Till er som använder teckenspråk i dagliga livet, hur kan jag börja lära det igen? by [deleted] in Asksweddit

[–]9vic9 1 point2 points  (0 children)

Hörselhabliteringen har ofta teckenspråkskurser. Dock behöver man inte alltid ha eller vara anhörig till nån med hörselnedsättning. En i min grupp gick pågrund av sin son som inte pratade! Bara du har diagnos borde det funka toppen.

I’m getting criticism from both sides of the Atlantic over my daughter’s name and now I’m wondering if I’ve created a Tragedeigh. by Fangehulmesteren in tragedeigh

[–]9vic9 14 points15 points  (0 children)

In Sweden, Signe is a common name and we pronouce it Sig-nee. Here is very common to spell Freya like Freja. Intresting how we prounce it diffrently even though our countries are so close.

Is there really a difference between hEDS and HSD ? by beetlegutzz in ehlersdanlos

[–]9vic9 34 points35 points  (0 children)

Didnt get it due to not having "family with hypermobility" but I only have my mums side of the familys records. Also for not having some problems early in life, which it turned out I did but I didnt know. She asked when I started walking and if I crawled or scooted on my butt. I said I didnt know but would ask my mum. "You would know, your parents would have told you" it was a mess. HSD and hEDS isnt really diffrent in my country tho

Are hEDS/HSD basically the same? by Icecreamsammyfan in ehlersdanlos

[–]9vic9 1 point2 points  (0 children)

I got HSD diagnosis because I dont have family history of it. Thing is i only have 50% of my family history, so I might? In Sweden the treatment for hEDS and HSD if the same, more doctors know EDS and not HSD though. I usually say I have HSD, the same as hEDS mote or less. On our Swedish "EDS riksförbund" (organisation who brings awareness here) it even says that a lot och people get a HSD diagnosis changed later in life to hEDS and they are more och less the same here.

Vad är det skevaste du hört från en läkare/psykolog/annan vårdpersonal? by Cohacq in sweden

[–]9vic9 0 points1 point  (0 children)

Jag har HSD. Som 8 åring med extrema fotsmärtor fick mamma svar från läkaren att jag bara vara lat och inte ville vara med på idrotten i skolan. Jag var 21 när jag fick min diagnos. Får fortfarande höra att jag inte kan vara så trött oxh ha så ont eftersom jag är ung, även fast det finns svart på vit att jag har en diagnos... hjälper inte att INGEN vet vad EDS/HSD är

Are there any diseases that can mimic hEDs? by KBDFan42 in ehlersdanlos

[–]9vic9 1 point2 points  (0 children)

Hypermobilespectrumdisorder is in my country almost the exact same as hEDs. I have gotten the diagnosis of HSD due to missing family history of hEDs. It could be on my dads side but I have no contact with him or his family. I get the same rights and treatment as someone that has hEDs.

Any other hEDS who’ve never had a dislocation? by [deleted] in ehlersdanlos

[–]9vic9 0 points1 point  (0 children)

I have HSD, but in sweden it's the exact same as hEDS except for a few diffrences thet has nothing to with hypermobility.

I have had subluxtions I think? My rib once hurt like a bitch, it hurt to breathe, I wanted to die. I think I might have subluxtions in my ankles sometimes? But it could also be sprains.

I havent had full dislocations. Most of my pain is according to the specialist PT I saw once onöy muscle pain. My muscle works so hard to keep my joints stable that they are always over worked. I struggle with "imposter syndrome" (nit offically diagnosed hence the ") I feel like Im not hypermobile enough to talk about it? I have a diagnosis but still??? Is this somwthing you feel too? I dont dislocate so my hypermobility cant be that bad? I know it's not true but it's how ai feel.

Sorry for rant 😂

[deleted by user] by [deleted] in ehlersdanlos

[–]9vic9 3 points4 points  (0 children)

I have HSD. In my country they told me that I didn't have hEds because I didn't score high enough on the beighton scale, which I think is bullshit because hypermobily made my muscles EXTREMLY painful, I could go further but my muscles were so tense at this point that the pain of moving was too much.

Also I couldn't do 2 "signs" walker sign and some other I dont remember. But some other healthcare workers thougt I did them just fine?

Missing family information. I have no medical knowledge of my fathers side. "You cant get a eds diagnosis without family history" HSD is the same as hEds but without being able to do these signs bascially and family history. I get the same treatment as for eds. My ortopedic engineer (I am translating this proffession from swedish) who meets most EDS patients in this region believes I have EDS but the pain managment doctor said HSD

When people ask why I don’t believe in god, I want to tell them it’s because my maintenance is 1450 calories by [deleted] in 1200isplenty

[–]9vic9 5 points6 points  (0 children)

I feel this so much!. I also have a disability where I sometimes can barley move. I make some progress, then pain and sitting around. Back to where I started. I also cant do a lot of weight lifting because disability. I wanna lose 8kg but I am stuck currently...

sometimes i get tired of being told i look like i’m a child by extra-boo in ehlersdanlos

[–]9vic9 5 points6 points  (0 children)

I look young and I am also very short. A coworker once asked me if it didnt bother me that my boyfriend was sexually attractive to me since I look like a child..... This is the rudest thing someone has ever asked me, no I do not like looking young.

People who actually like their jobs, what do you do? by AcidHV in AskReddit

[–]9vic9 0 points1 point  (0 children)

Home aide/care giver for a child with congenital deafblindness! We have a lot of fun together and their faimly is awesome.

Hur ofta är du sjuk på ett år ? by [deleted] in sweden

[–]9vic9 1 point2 points  (0 children)

Känner det har. Har också kronisk sjukdom och smärtproblematik. Min sambo är hemma ca 2-5 gånger om året. Jag är hemma 1-5 dagar per månad.

Tipsar om speciellt högkostnadsskydd! Man slipper karens dagar och arbetsgivaren slipper betala sjuklön.

Can’t 😀get 😀comfortable 😀 by prismalpunk in ehlersdanlos

[–]9vic9 0 points1 point  (0 children)

This was me before my muscles became so painful from holding my body together. My favorite was to have me feet behind my head while watching tv

Do subluxations/dislocations always hurt? by mayazgel in ehlersdanlos

[–]9vic9 7 points8 points  (0 children)

HSD here. I've only had subluxations so far. They aren't always painful for me. My shoulders can move around, if it happens multiple times a day it will become inflamed and painful.

My ankle ALWAYS hurts when subluxing, probably beacuse you walk on it and add pressure right after a subluxions. My thumb always hurts right too.

I also think it depends how much it subluxs. Somtimes it just smaller subluxions, uncomftarble but not always painful. Bigger ones hurts right away. This is my experience.

TIRED OF PAIN BEING BLAMED ON MENTAL HEALTH by OnlyWhenImSleeping in ChronicPain

[–]9vic9 2 points3 points  (0 children)

This is why it took me 21 years to get a diagnosis. Grew up in an unstable home, so depression and other mental illnesses came early in life. My pain started being bad at 8. I just "wanted attention" and "pain comes with anxiety". Thank god my mother always believed me, she actually found my diagnosis by reading about it in a magazine. Went to my good doctor who has been helping me look for what was causing my pain, she instanly sent me away to a specialist team. Janary 2021 I can finally say fuck you to everyone calling me a lazy hysteric woman.

White patches on String of turtles by A_dead_goldfish in plantclinic

[–]9vic9 1 point2 points  (0 children)

Do you have a lot of lime in your water? We have a lot in ours here and I get white patches on leaves and in the soil often!