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En blogg om mig och mitt liv. Allt runt omkring och allt som innefattar en vardag. Den är inte alltid normal men vad är normalt idag? Den kommer innefatta prat om min SLE, livet med den bästa sambon, jobb, tillvaron kring att ha lämnat storstan för att bygga upp ett gemensamt liv i ett litet samhälle i norr och framför allt en himla massa pyssel av olika slag. Jag är en fighter, har alltid varit och kommer alltid vara, men har många gånger stött på gupp på vägen i livet... Min sjukdom har varit ett sådant... Men jag fortsätter göra det jag älskar, vill, och känner för och det är att få sprida en liten uns av lycka och glädje!! Så följ med på min/vår resa :) Den har precis börjat...

Min SLE-historia...

Publicerad 2012-12-18 13:25:48 i Allmänt,

Allt började vårterminen första året på gymnasiet, det var bara ett par dagar kvar på terminen när jag började känna mig sjuk...
Allt gick väldigt fort, jag blev inlagd och missade skolavslutningen det året... Läkarens prognoser då var bra om jag levde efter vad de sa men det skulle aldrig gå! Inte för en 17-åring som hade hela livet framför sig... Fick inte vistas i solen utan solskyddsfaktor 30+, jag blev avrådd att skaffa barn då de skulle kräva specialistmödravård och de kunde inte försäkra min hälsa, jag stod inför en framtid sida vid sida med sjukhus och undersökningar, ett liv katat med mediciner och tunga biverkningar...
Medicineringar var i full gång, livet fick sig en törn, läkarna ville jag skulle sluta med inriktningen jag hade på gymnastiet (hotell och restaurang) men jag vägrade! Jag hade hittat mitt kall i livet och jag var fast besluten i att det skulle de inte få ta ifrån mig! Sommaren gick, och jag blev sämre... 
Efter att ha fått komma in till en riktigt bra läkare i början på hösten, som jag är så tacksam över idag, upptäcktes det att sjukdomen var längre gången än förstått och mer aggresiv än vi trott... Njurar var påverkade och en dialys kom upp på tal och kanske till och med en transplantation om inte cyklofosfamid skulle hjälpa, cellgifter på drop...
Helvetet började... 
De hittade fläckar på lungor... 
Biverkningar var ett faktum... 
Infektionskänslig som jag blev drog jag på mig all skit som fanns, urinvägsinfektioner gick ut i blodet, 40 graders feber, kräktes av droppet, jag levde mitt i ett helvete... 
Försökte finna lycka och glädje ändå! Mesta dels har jag, nästan alla gånger jag behövt behandling, infunnit mig själv på sjukhuset... Och det av en massa olika anledningar... Så många gånger man önskat sällskap, men ack vad stark man blir i sig själv! 
Dagarna jag kunde stå på benen och behålla maten lyckades jag ta mig till skolan, sätta mig i skolbänken 20 kg tyngre och leva ett normalt liv... klasskompisarna visste att livet spelade mitt ett spratt men det var inget som pratades om... inte högt iaf...
Vårterminen andra året på gymnasiet valde jag att inte vara med på skolfotograferingen... 
Mer undersökningar gjordes...
 
Minns en undersökning som gjordes som just hade med njurarna och göra... 
I ett dygn skulle det samlas urin, mitt urin, i en dunk! Jag tyckte först att det lät sjukt! Men fick ju gå med på detta då rå... jag bar på mitt urin i ett dygn! 
Kul om man hade blivit rånad?! Vem hade reagerat mest? Jag som slapp bära på skiten? Eller rånaren som kom över en dunk med urin??
Skrattar gott åt det idag, det måste jag få göra! Hur ska man annars ta sig igenom livet... Hur ska jag annars ta mig igenom dagarna... 
 
Efter 1,5 år ville jag inte vara med mer, kroppen började reagera på cellgifterna och vi (jag och doktorerna) kom överens om att börja med andra cellgifter istället men på tablettform... 
Det tog ett tag att hitta rätt tabletter, då det stötte på konstiga hinder på vägen även där...
Har ju kommit på att man inte är som alla andra :) Saknar tydligen en viss enzym i magen vilket gör att jag inte heller kan äta vad som helst för tabletter då kroppen inte kan bryta ner dem... 
Men tillslut så hittade vi rätt, de åt jag ett par år tills kroppen började säga ifrån även där... Mådde dåligt flera dagar efter jag tog medicinerna, kunde inte äta... det spelade ingen roll vad jag gjorde... Åt eller inte innan det var dags... 
Och då började medicinslarvet... 
Jag tog upp detta med läkaren i flera omgångar, men ingen ville byta läkemedel! 
Det krävdes en flytt upp till Ljusdal och remiss till reumatologen i Hudiksvall för att läkaren skulle kunna skriva ut nya mediciner... Sprutor! Slipper svälja! Jippie! 
Men biverkningarna blev jag inte kvitt :) Men har även där fått testat mig fram och hittat sätt som gör att illamåendet håller sig borta... 
 
Och så står man här idag, slarv av mediciner har gjort att sjukdomen slår bakut... 
Undra om jag lärt mig något denna gång...
 
Mer om denna historia en annan gång... 
Behöver en liten paus ifrån det förflutna... 
Behöver andas...
 
Massa kärlek och värme till er alla...
Ta vara på er och era nära och kära... 

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One of many key factors in designing a custom solar power system is understanding the different sorts of solar panel systems and their performance characteristics. There's two main forms of solar power panels – monocrystalline and polycrystalline – each having its own advantages and disadvantages. Monocrystalline solar energy panels are made of a single, high-quality crystal, helping to make them more effective and sturdy. However, they are higher priced than polycrystalline panels, which are produced from multiple, lower-quality crystals.

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