nedelja, 28. oktober 2012

Ko se te dotakne košček Sonca za goro

Svojo pripoved bom začela v slogu simpatičnih grafitov, ki so se pred nekaj leti pojavili po ljubljanskih ulicah in me zadeli s svojim odkritim, preprostim, a hkrati močnim sporočilom.  Jokala sem. Jokala sem, ko sem brala knjigo Sonce za goro. Jokala sem tako silovito, da je nisem mogla prebirati nikjer drugje, kot v zavetju doma. Nekoč, ko sem jo vzela s seboj v nek lokal ob Ljubljanici, se mi je zgodilo, da sem jo po eni sami prebrani strani zaprla, ker so mi po licih začele polzeti solze in mi je postalo nerodno pred pogledi.

Ne zgodi se pogosto, da naletiš na knjigo, za katero se zdi, kot da dobesedno popisuje del tvojega življenja in da o tvoji intimni izkušnji pripoveduje nekdo, ki ga še nikoli nisi videl, nekdo, ki ga ne poznaš.  Sonce za goro je taka knjiga zame. V njej sem našla resonanco s svojo bolečino ob borbi s kronično boleznijo, zapisano tako nežno in resnično, da me je ganila do dna srca.

Avtorica Cvetka Belca v njej opisuje izkušnjo matere, ki se sooča z številnimi neprijetnostmi atopijskega dermatitisa. Pripoveduje o boju, ki ga dan za dnem bije skupaj s svojim otrokom, katerega koža je izgubila svojo primarno vlogo varovala in zaščite in se spremenila v vztrajnega, vnetega, srbečega in rosečega se sovražnika.



Tako kot sin gospe Belca, ki je že od najzgodnejših let trpel za zelo hudo obliko atopijskega dermatitisa, se tudi jaz celo življenje borim z isto boleznijo, z enako srbečo kožo, neprespanimi nočmi, neznosnim srbenjem, praskanjem do krvi in občutki sramu in krivde ob tem.  Pa tudi globoke jeze na svojo kožo, ki mi kar ne neha in ne neha jemati energije, svobode  in spreminja moje življenje v nenehen boj za obstanek.  Litri in litri negovalnih krem in desetine receptov za kortikosteroidna mazila so se nabirali skozi dolga leta. Da ne govorim o grozljivih simptomih rebound fenomena po prenehanju uporabe steroidnih mazil, ki so v mojem primeru močno presegli optimalno količino in dolžino uporabe. Na žalost kot otrok nisem imela take sreče kot sin gospe Belca, ki se je že zelo zgodaj začel zdraviti pri eni izmed naših najboljših dermatologinj na področju atopijskega dermatitisa (imena na njeno željo ne bom omenila). Usoda je hotela, da sem tudi jaz končno pred mesecem dni prišla do njenega oddelka in ordinacije. Razumevanje in zdravstvena ter čustvena podpora dermatologa je v procesu zdravljenja atopijskega dermatitisa neprecenljiva. In življenje je postalo lažje tudi zame. Doktorica je ob vsem svojem znanju in izkušnjah pravi angel potrpežljivosti, čutim, da moram izkoristiti priložnost in se ji od srca zahvaliti za prijaznost in pripravljenost pomagati.

Človek, ki  ni nikoli v življenju imel resnejših težav s kožo, si težko predstavlja , kako zelo boleče, utrujajoče in v globine telesa in duše segajoče so lahko bolezni našega največjega organa. Gospa Belca  je doživljala sinovo trpljenje, kot  bi se ji dogajalo na lastni koži. Take naše dobre mame so. Pogosto jih otrokova bolečina prizadane še bolj kot pa otroka samega.

V borbi z dolgotrajnimi težavami in vsakodnevnem soočanju z vsemi neprijetnostmi, ki jih AD prinaša smo pripravljeni poizkusiti prav vse. Hipoalergijska dieta, novo negovalno mazilo, prehranski dodatek, zamenjava okolja, prevleke proti pršicam, alternativne terapije, tehnike sproščanja, meditacije, kopeli z različnimi dodatki, obsevanje z UVB žarki, zdravilni čaji, psihoterapija in še in še in še...Iskanje pomoči se ne neha dokler se ne nehajo težave. In atopijski dermatitis je vsekakor bolezen, ob kateri se človek nauči zaprositi za pomoč, nauči se sodelovanja z drugimi in še bolj kot vsega drugega se nauči potrpežljivosti. In prav to tako lepo začutimo v zgodbi Cvetke Belca.  Nikoli obupati, četudi nas kdaj preplavijo solze in je vsega preveč, vedno je potrebno gledati naprej in se boriti za vse več lepih dni brez poslabšanj, za vsak nov kvadratni centimeter zdrave kože. In če si dovolj potrpežljiv, če se ne vdaš, zmagaš.

Koža predstavlja našo mejo s svetom. Mejo med tem, kar naj bi ostalo zunaj in med tem, kar je naše, česar ne moremo in nočemo dati. Na sebi sem spoznala, da je moja poškodovana meja za sabo potegnila ogromno strahov pred tem, da se ne bom mogla ubraniti zunanjih vplivov. Hkrati s povsem razumnimi strahovi pa so se na plano prikradli tudi tisti iracionalni, iz najzgodnejšega otroštva. Ker je atopijski dermatitis močno povezan s psiho in zmožnostjo obvladovanja stresa, je psihoterapija eden od zelo pomembnih faktorjev zdravljenja. Preko pogovorov o mnogoterih temah, ki so se mi odpirale na vsaki psihoterapevtski uri, sem se začela spoznavati globlje, strahovi so se preko procesa ozaveščanja začeli razblinjati. Kako čudovito bi bilo, če bi tudi na naši dermatološki kliniki vendarle po zgledu tistih malo boljših iz tujine, zaposlili psihoterapevta, ki bi lahko bolnikom pomagal v iskanju vzrokov bolezni tudi na duhovnem in umskem nivoju.

Knjiga Sonce za goro je mehak obliž na veliko rano, ki jo nosimo s seboj bolniki s kožnimi boleznimi. Daje upanje na ozdravitev, daje občutek razumevanja,  pripadanja. Slišala sem, da je protagonist zgodbe danes zdrav mladenič, ki mu bolezen več ne greni življenja. Svobodno sonce se je prikazalo izza gore, ponosno sije na nebu in ''fantu'' iz knjige se ni več potrebno skrivati pred njim. Zgodba o uspehu torej. Upanje na ozdravitev je in bo, tudi za bolnike s kroničnimi boleznimi, treba je vztrajati, verjeti  in delati za izboljšanje.

Upam, da kdorkoli prebere ta članek, nikoli ne bo zamahnil z roko ob dermatološkem pacientu in si brezčutno dejal: ''Ah, saj je samo koža.''  Ta ''samo koža'' je namreč še kako hudičevo pomembna, in če ne deluje normalno, na nek način spominja na visoko temačno goro, ki soncu ne pusti, da bi nam obsijalo in prikazalo ta prelepi svet, v katerem živijo popolnoma svobodno le zdravi ljudje. 



PS.: Hvala Ana Š. in Pia D. za pomoč pri pisanju članka!:)

nedelja, 26. avgust 2012

V Nedelu o atopijskem dermatitisu in odvisnosti od kortikosteroidnih mazil

Z novinarko Jano Zupančič nama je uspelo ustvariti članek, ki je bil objavljen v Nedelu 19. avgusta 2012 in bo informacijo o možni rešitvi ponavljajočega dermatitisa (opustitvi kortikosteroidnih mazil) ponesel še med širšo množico. Resnično si želim, da bi članek komu od trpečih atopikov pomagal pojasniti, kaj se dogaja z njeno/njegovo kožo.

Upam, da je dovolj jasno, da je opustitev kortikosteroidnih krem velika  in ne najlažja odločitev, za katero je treba stati trdno in biti izredno potrpežljiv, z namenom da koža dobi priložnost naravne obnove in resnične ozdravitve. Dober razmislek in priprava na dolge mesece detoksifikacije telesa, ki bo zahtevala najverjetneje tudi vsaj nekaj tednov bolniške, sta nujna. Rezultat, po letu ali dveh, ko se je telo očistilo nesnage in se je energija obnovila in dvignila na popolnoma novo, višjo raven, pa vsekakor vreden še tako hudega trpljenja v procesu. Izkušeno na lastni koži:)

http://www.delo.si/zgodbe/nedeljskobranje/sindrom-rdece-koze-gorenje-pri-zivem-telesu.html


ponedeljek, 06. avgust 2012

Dare to disagree / Pogum za konflikt

''The data was out there, it was open, it was freely available, but nobody wanted to know. A child a week was dying but nothing changed. Openness alone cant drive change.'' Margaret Heffernan

The data about Red skin syndrome is out there in medical journals also for more than 20 years...During this time, what has changed in the ways of treatment of atopic dermatitis? Unfortunately not enough to prevent RSS...

http://www.ted.com/talks/margaret_heffernan_dare_to_disagree.html

Here is something U CAN DO. Please sign the petition to label all topical steroid cremes of potential severe addiction:
http://www.causes.com/actions/1678513?recruiter_id=28451960&utm_campaign=invite&utm_medium=wall&utm_source=fb
Edward Monkton

torek, 01. maj 2012

ITSAN- International Topical Steroid Awareness Network ali Mreža za ozaveščanje o odvisnosti od steroidnih mazil

Danes je štartala nova uradna spletna stran Mreže za ozaveščanje o odvisnosti od steroidnih mazil. Vesela sem, saj to pomeni, da naše sporočilo postaja vse močnejše in bolj enotno. Na strani si lahko preberete (vse v angleščini), kakšni so simptomi in znaki odtegnitvenega sindroma od kortikosteroidnih mazil, kako dolgo ta traja, kako se ga lotiti, kje iskati podporo, skratka veliko informacij za tiste, ki nameravati nehati z uporabo mazil. Poleg tega se na tej strani odpira tudi nov forum za podporo bolnikom med procesom zdravljenja kože/detoksikacije telesa. Dobrodošli so tudi denarni prispevki, ki bodo šli v raziskavo potencialnih načinov zdravljenja oziroma pospeševanja obnavljanja kože/regeneracije celotnega telesa med odtegnitvijo...

Tudi na Facebooku se je odprla nova stran ITSAN, lahko se ji pridružite.

Prav tako se lahko pridružite Zasebni skupini ITSAN na Facebooku, kjer se srečujemo bolniki in svojci bolnikov in izmenjujemo izkušnje, podobno kot na Googlovi skupini za samopomoč.

Če poznate kogarkoli, ki namerava prenehati z uporabo kortikosteroidov ali ste to vi sami, me lahko kontaktirate prek tega bloga (komentarji) in z veseljem sem pripravljena nuditi vso možno podporo in pomoč v obliki informacij in tudi čustvene podpore, ki je nujno potrebna med najhujšo krizo. Ne bojte se prositi za pomoč, zaslužite si jo!:)



četrtek, 19. april 2012

Še ena zgodba odvisnosti od topikalnih steroidov


Objavljam še eno zelo tipično zgodbo steroidne odvisnosti, napisala jo je Jo, članica google support groupa. Če vas zgane, vas prosim, da jo delite prek svojega Facebooka, morda z njo koga rešimo trpljenja...Hvala:)

Im posting this very typical steroid addiction story from Jo, who also went through hell of healing the insanely damaged skin...If u find it moving, please share it on your Facebook, we might save someone from suffering like this...Thank u:)

My Topical Steroid Addiction Story      By J. B.
  My topical steroid addiction started like many others. Typical eczema as a baby and child (links to immunisations cannot be ruled out) which was mainly confined to the elbow and knee creases. I cannot remember when I started using corticosteroid creams on my skin, but I know I was a young child. My teen years were no different it didn’t trouble me all that much, but at 21 years, I had a severe outbreak I now recognise to be my first experience of topical steroid withdrawal.
 For 14 years I then experienced different degrees of withdrawal symptoms, of course not realising this at the time. My face was burning red followed by flaking skin. Skin so tight I could hardly smile at the end of the day and all I longed for was to go home and soak in a bath. My work and social life suffered and I really didn’t like being around anyone when I was so uncomfortable. I visited several GP’s, Dermatologists, Herbalists, Naturopaths and Chinese Doctors trying to find out what was causing these terrible reactions in my skin. I tried eliminating dairy, wheat, alcohol, dust, stress etc and I hate to think how much money I spent over these years. It was psychological torture constantly thinking I was causing this through my own actions in some way.
 All I was ever offered was topical steroid creams. If one didn’t help then another was prescribed, usually stronger. Nothing natural worked. Over this time I had quiet moments, especially around the pregnancies of my three children, but my skin remained an issue and would often break out into patches of what I thought was eczema on my face or various other parts of my body. Somehow I managed to keep it under control without resorting to highly potent creams.
 Just over five years ago I did some research on eczema and found information stating people can become addicted to the steroid creams. I stopped cold turkey, but due to lack of information available, was so totally frightened by the terrible withdrawal symptoms I suffered I decided to wean myself off slowly instead. I ended up on antibiotics and steroid cream to bring it back under control. Until 12 months ago, I thought I’d managed to wean myself off.
 I had used a moderately potent steroid cream, mainly Betnovate .02% cream on and off for 30 plus years. I also used stronger creams like Diprosone and Elecon for short periods and was given one oral dose of Prednisone.
  After several quiet months and using little of the creams at all, I started getting eczema again. I got increasingly frustrated when some spots on my legs and arms were not healing even with the help of the creams. A Doctor I saw who did not know nor ask about my history prescribed me script after script of Betnovate. Not once did he mention the dangers of long term use. I was adamant I was not going to get any stronger creams, so did some more research. This time I found Kelly’s site www.addictedskin.com , emailed Dr. Rapaport and ceased using ALL topical steroid creams on October 25th 2011. Here follows what happened.
 First the red burning skin with severe chills, crying and feeling like giving up. Unable to function or get out of bed for the first three weeks, and unable to leave the house except for dropping off kids at activities for about 6 weeks. No desire to socialise and very tired when attempting to. Unable to wear clothing comfortably except for a sarong. I did offer my Doctor the articles by Dr. Rapaport to read, but she never got back to me. That was very disappointing and I have not seen any Doctors since. The first 4-5 months my mind was totally preoccupied by my skin. At the end of the first 3 months my feet were unbearable with pins and needles and I needed medication so I could concentrate on daily chores.

 
  The above photo was taken three weeks into withdrawal. This was the state of my skin from top to toe at this time. I also had severe chills lots of clear but foul smelling fluid oozing and an incredible itch. Sleep was very difficult and when I finally was able to get some sleep, on several occasions felt like I did not want to wake up. I took paracetamol and antihistamines for a little relief.
The above pictures were taken 19 Jan (left) and 27 Jan (Right). The pictures really don’t convey what the skin is feeling like underneath at this stage. The skin was also more red than the photo shows.
Other symptoms Included ear oozing fluid, loss of about 2/3rds of my hair swelling of ankles and at times depression. Severe pins and needle type sensations in my feet along with stabbing pains in any lesions. Hot showers which were once soothing became a time of torture and the only cream my skin could tolerate was Vaseleine Petroleum jelly. I was incredibly uncomfortable and felt very unattractive!

   

       
The above left photo was taken on 23rd February and the one on the right 2nd  April. The picture below was also taken on 02 April. Obvious improvements, but still a lot more healing to be done.

Well, here I am 6 months later, finally feeling like I have my life back. Finally feeling like I can get through a day without tears and finally able to go to bed without apprehension about what the darkness of night holds. The itch is about 10 percent of what it was and most of my skin feels normal. In fact a lot of my skin feels better than it has for many many years. I still have eczema like rashes on the insides of both my arms and thighs and my feet and ankles still cause me the most distress. I am at least walking properly again thank goodness, but still have pain in my ankles, both skin and muscles. My face has been very good, but just the last few days has become a little spotty again, perhaps another good sign, who knows. I am now doing all my normal daily activities and feel much much better emotionally. I still itch several times a day and I still sweep the floor beside my bed daily because of excessive skin loss.
I have always had a well balanced healthy diet, so I did not make any changes throughout this time, except for increasing water, fruit and vegetable intake. And I have taken vitamin B supplements. I am now eating as I always have and have found alcohol in moderation to have no adverse effects on my skin.
I have not a moment of regret (except for the loss of valuable time with my children) for choosing to go through this even though it has been an absolute living hell at times. Being off steroid creams for the rest of my life and finally feeling free of any guilt I carried due to feeling in some way responsible for my skin issues is a huge reward.  I thank my family and friends so much for seeing me through this and allowing me the time to heal.
Topical Steroid Withdrawal is a very difficult process. Explaining it to people can be tyring and frustrating because the appearance of our skin is only half the story. The level of pain, itching and discomfort which can go on for months at a time, can only really be understood by those who have experienced it or had the unfortunate experience of watching someone close go through it on a daily/nightly basis. For this reason the forum on Kelly’s site is invaluable because this is where you will meet such people and receive the support to keep on going when you would so much love to give up. For this a huge thankyou to Kelly for starting her website and allowing us access to such important information. And of course Dr Rapaport who has gone out on a limb to acknowledge the damage being caused by these drugs.
I hope somehow my story might help someone else in a similar situation and I hope that the medical community will one day stop denying the terrible truth about the over prescribing of topical steroids.