Vi går “ALL IN”!

Onsdag kom dagen endelig hvor jeg havde min aftale på Modicklinikken i Odense. Jeg er meget ambivalent når folk spørger hvordan det gik. På den ene side er jeg ved at tude af glæde over de forventninger de har til behandlingens resultat og på den anden side er jeg bange for at tro på deres prognoser – jeg er så bange for at blive skuffet igen. Jeg troede jo også at operationen for min diskusprolaps ville være min redning – men nej!

Hanne Albert som er en af de førende forskere indenfor Modicforandringer har startet klinikken. I mine tidligere indlæg kan du læse meget mere om hvad Modicforandringer er og hvilken behandling jeg nu skal starte gennem Modicklinikken.

Det var en MEGA hård dag med 3 timers kørsel + 3 timers information + 1 times laserbehandling. Så jeg har været hårdt ramt efter vi kom hjem og igår var jeg nødt til at melde fra til en surprice fødselsdagsbrunch for min gode veninde – pisse meget ØV😢😫 Det var en af de dage hvor jeg gik rundt i en tåge og levede af yoghurt og havrefras, fordi jeg ikke engang orkede at smøre en rugbrødsmad. Og jeg havde slet ikke en hjerne der kunne skrive dette indlæg. Heldigvis er der trods alt ikke så mange af de dage. I dag er en af de gode dage uden voldsomme smerter – ved ikke om det skyldes at jeg lå i sengen det meste af dagen igår eller om det måske er den laserbehandling jeg fik på klinikken.

Nå, men da vi ankom til klinikken startede jeg med at udfylde et spørgeskema omkring mine symptomer, smerteniveau og hvordan mit liv er påvirket af smerterne. Derefter skulle det uddybes yderligere ved en samtale. Også blev vi endnu engang mindet om at HELE vores liv drejer sig om mig og min skide ryg. Alt skal planlægges efter mine behov og som jeg skrev i mit tidligere indlæg “Smerterne rammer hele familien” så er det enormt frustrerende. Et af spørgsmålene var også hvad jeg ønsker at kunne men ikke kan i dag pga. smerter. Jeg startede med at sige:

  • Sove mere end 4-5 timer om natten
  • Sidde ned mere end ½ time uden smerter
  • Arbejde min. 20 timer om ugen (undgå flexjob)
  • Lave husligt arbejde (madlavning, rengøring, osv.)
  • Deltage i sociale arrangementer uden at smerterne skal distrahere mig

Så spurgte hun om ikke der var mere??? Hvad mener hun nu med det? Var det ikke nok at forlange? Disse ting ville jo gøre vi kunne få en normal hverdag. Men så kom drømmen om alle de ting jeg for mange år siden havde slået helt ud af mit hovede, og jeg aldrig troede ville blive muligt igen. Tænk hvis jeg kunne:

  • Blive spinning instruktør igen
  • Mountain bike med min mand
  • Klatre, rapelle, lange vandreture og prøve at surfe
  • Stå på ski igen
  • Tag på storbyferier og vandre rundt hele dagen
  • Spille fodbold med ungerne og hoppe på trampolin med dem

Det er alt sammen drømme scenario og jeg var ved at tude af glæde bare ved tanken. Selvom de har meget høje forventninger til behandlingen og tror på jeg kan alt dette om 2 år, så er jeg så ufattelig bange for at drømme disse drømme. Men tænk nu hvis…… det kilder helt i maven som når man er nyforelsket.

Selvom jeg havde mest lyst til at drømme videre, så gik vi videre til en meget grundig lægelig, men fuldt forståelig gennemgang af hvad der helt konkret sker i kroppen når man har Modicforandringer, hvilken forskning der er lavet og hvilken sandsynlighed der er for at blive rask. Mine scanningsbilleder blev også meget grundigt gennemgået hvilket var en positiv oplevelse. Jeg har jo nogle degenereret diskos (slidgigt) og nogle udposninger/arvæv på flere diskos efter operationen for diskusprolaps. Men deres vurdering er at denne del ikke er så slem, at det ikke kan holdes nogenlunde nede med målrettet træning. Det vil jo betyde at hvis de har ret i det og jeg får behandlet Modicforandringerne med succes, så skulle træning i bedste fald kunne afhjælpe resten.

Modicforandringerne ser ikke voldsomme ud på scanningen, men de forklarede at omfanget som kan ses på scanningen ikke nødvendigvis hænger sammen med omfanget af smerter. Så smerterne kan være de samme om det er et stort eller lille område der er angrebet. Har forsøgt at forklare lidt på scanningsbillederne ovenfor.

Medicin og hvil i løbet af dagen

Til sidst fik vi en meget grundig instruktion omkring den 100 dages antibiotika kur jeg nu er startet på i dag. Jeg har fået udleveret et meget præcist skema, som viser hvornår jeg skal tage antibiotika og alt det andet medicin/kosttilskud jeg skal have. Den viser også hvornår og hvor meget jeg skal hvile i løbet af dagen. Det starter hver dag kl. 6.30 og slutter kl. 22.30 og tiderne må max. afviges med 30 min. Jeg har svært nok ved at huske de 4 gange om dagen jeg tager medicin nu, så jeg er simpelthen nødt  at sætte en masse alarmer. Sådan kommer mit liv så til at se ud de næste 100 dage!!

De første 100 dage er der fuld fokus på at antibiotikaen skal ind og bekæmpe den bakterie som æder marven i mine ryghvirvler. Knoglemarven er bygget op som et stillads/gitter, og når bakterien æder af den bliver den skrøbelig og der sker løbende små brud på stilladset. Efterhånden er der områder helt uden stillads og disse områder fyldes istedet med en væske som i vabler. Jeg skal hver dag have 3000 mg antibiotika hvilket er en ret høj dosis, men det skal der åbenbart til for at den kan nå helt ind i mine diskos/ryghvirvler. I denne periode skal jeg holde mig meget i ro, sygemeldes, ingen tunge løft, ingen rengøring eller træning. Dette er for netop at begrænse at der ikke sker flere små brud inde i knoglen. Jeg skal tilmed ligge fladt ned i 30 min. 5 gange om dagen.

Når bakterien forhåbentlig er slået ihjel efter 100 dage skal jeg ligeså stille i gang med genoptræning. Knoglemarven genopbygger sig selv igen over tid, men hjælpes i denne behandling på vej med laserbehandling og kalktilskud. Genopbygningen kan tage op til 2 år og derfor starter genoptræningen meget skånsomt og løbende bygges der på.

Det er meget vigtigt at man følger deres vejledning for at opnå de bedste resultater. Nogle mærker en virkning af behandlingen allerede efter 4-6 uger (andre aldrig!), og det kan være svært at holde sig i ro og ikke lave noget, hvis man pludselig har færre smerter. Men jeg kan mærke på mig selv, at jeg er klar til at gå all in på projekt “kampen mod smerterne”. Jeg vil hellere gøre det 100% nu også måske være i topform igen om 1-2 år, end jeg vil gøre det halvt også ende med kun at få lidt fremgang over mange flere år. Og jeg vil nødig se mig selv i spejlet om ½ år vidende at jeg ikke havde gjort alt det der skulle til, og bebrejde mig selv for at resultatet ikke er tilfredsstillende. Det er som at stå med dårlige karakter som student, og vide at man kunne have gjort det meget bedre, hvis man bare var gået all in – og vi får sgu ikke en chance mere!

46 piller om dagen (heldigvis er en stor del kosttilskud for at begrænse bivirkningerne)

Det sværeste er at min mand virkelig trækker et stort læs, og jeg kan mærke han kæmper hver dag og jeg er bekymret for ham. Han er jo også bare et menneske, og han har altid skulle være min klippe (mit rygmareridt startede ½ år efter vi mødte hinanden – for 14 år siden). Alle inkl. mig selv har altid bare tænkt “det klarer Søren” for det har han jo altid gjort!! Men hvad nu hvis han pludselig ikke kan mere…….? Det er fysisk hårdt for ham at skulle trække det store læs med alt det praktiske, men som han selv siger så fylder bekymringerne for mig og vores fremtid også rigtig meget. Vi snakker meget om hvordan vi må lære at lade stå til. Vi kan begge godt lide når der er rent og ordenligt, så vi arbejder med at være mere ligeglade og bruge tiden på det vigtige.

Jeg glæder mig så meget til vi forhåbentlig kan have overskud til andet end bare at få alt det praktiske til at køre rundt. Tænk hvis vi kunne få overskud til hinanden og til at være kærester igen. Hvis vi kunne opleve noget sammen igen. Forstå mig ret – vi elsker hinanden, men når man i ny og næ får afsat børnene og trækker sig selv afsted på restaurant eller til en koncert, så er det bare ikke det samme når man er så udmattet at man næsten ikke har overskud til at snakke sammen og tager hjem på hovedet i seng så snart koncerten er slut.

Mit yndlingscitat er “What doesn’t kill you makes you stronger” og det omhandler ikke kun mig og mit helbred, men i den grad også vores forhold. Vi har haft utroligt meget modgang (ikke kun mit helbred), og derfor er jeg også stensikker på, at vi er stærkere end mange andre forhold. Selvfølgelig er der perioder, hvor man har lyst til at løbe skrigende væk (det tror jeg alle længere forhold oplever) men her er det man skal have troen på, at man kan klare modgangen sammen. Heldigvis tager min mand det meget bogstaveligt når man i kirken lover “i medgang og modgang til døden os skiller”, og når jeg i mine dårlige perioder har kastet i hovedet af ham, at han ville få et bedre liv med en anden som han ikke skulle tage så meget hensyn til, så bliver han ret sur på mig. Så selvom jeg slås med en skyldfølelse, så skal jeg jo huske på, at jeg ville gøre det samme for ham hvis det var omvendt.

Konklusionen er så at jeg (vi) går all in og investerer nu en længere periode på, at jeg kan få det bedre, og at vi kan få en normal hverdag og et liv med overskud til oplevelser og kærlighed. Mange siger at tro kan flytte bjerge – så JEG VÆLGER AT TRO PÅ DET!

Tak fordi du læste med 😊
Kærligst Zinna

P.S. Det skal lige nævnes at denne behandlingsform endnu ikke er godkendt af Sundhedsstyrelsen og udføres derfor ikke andre steder end på Modicklinikken (så vidt jeg er informeret). Dog har jeg hørt at en enkel læge/forsker i Middelfart også giver denne AB behandling (i det offentlige). Min behandling er derfor egenbetaling. Jeg ved der er andre med Modicforandringer som følger med her og jeg vil inden længe lave et mere detaljeret indlæg omkring priser osv., så det kan tages med i jeres overvejelser om at starte AB behandling. Jeg kan dog ikke komme med en vurdering af om det har været det hele værd før om 1-2 år.

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159 kommentarer

  1. Hejsa.
    Velkommen i klubben, en klub man ville ønske man kunne gå udenom.
    Jeg har selv været gennem den behandling som du nu er gået i gang med. Det kræver en stor portion positivitet, tålmodighed og at være ekstrem lydhør overfor kroppen, som helt sikkert nok skal fortælle dig hvis du ikke gør som du har fået foreskrevet. Og hende Hanne er en bestemt dame , men helt sikkert meget meget dygtig. Jeg blev god til i de 100 dage, at finde ting man kan lave liggende, for tv kommer alt for hurtig til at være kedeligt, man kan strikke, hækle og nærmest få diplom i google . Nu er jeg i gang med genoptræning og har ingen ide om hvor og hvornår jeg kommer i gang med et arbejde igen. Men det er ikke noget der bekymre mig lige nu, lige nu er JEG vigtig og det siger jeg for første gang i mit lange liv. Jeg kan ikke endnu sidde længere end 20 min på en alm stol, men jeg kan gå 1,5 km og holde ud at nusse rundt i meget længere tid end tidligere. Jeg har en enorm forstående mand og børn, som også holder mig i ørene, da jeg har det med at glemme at lytte til kroppen.
    Ønsker dig alt det bedste og håber det er okay at jeg følger med og evt deler din side på min egen blog.

    1. Hej Majbrit
      Tusind tak for din besked. Det er altid dejligt at høre fra andre som er med i den uønskede klub. Jeg har hørt det samme fra andre – altså at det bliver 100 dage der kræver stor tålmodighed. Jeg var i forbindelse med graviditet og fødsel af mine tvillinger indlagt i lige knap 3 mdr. og prøver at sammenligne det lidt med det. Hvis jeg kan klare det – kan jeg også klare det her. Men dengang fik jeg den største gave i livet med derfra og det var dermed det hele værd. Og jeg prøver at huske på at her kan jeg også få en stor gave, nemlig at blive “helbredt”. Så jeg skal nok klare det, selvom der helt sikkert vil komme dage hvor jeg ikke tror på det. Jeg er glad for at have bloggen at bruge tid på og jeg er kommet i kontakt med så mange søde mennesker (som dig) – det er som om man næsten kender hinanden fordi man har en indbyrdes forståelse. Også går tiden jo også bare med at alting foregår i slowmotion. Jeg tror det værste for mig bliver isolationen – altså at jeg ikke ser ret mange mennesker, men det er jeg ved at arbejde med.
      Dejligt at du er igennem kuren og nu kan starte genoptræning – håber det betyder at du er igennem det værste. Og jeg håber virkelig du kommer til at mærke mere fremgang.
      Du er MEGET velkommen til at følge med (også gerne på FB eller Instagram) og dele min side. Men jeg vil også meget gerne høre hvor jeg kan finde din blog
      Kærligst Zinna

  2. Kære Zinna
    Jeg er blevet tilbudt behandlingen, så det er så dejligt at kunne bladre rundt herinde og læse om dig og dit forløb. Tak! Kh Tanja

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