LIVING WITH A CHRONIC ILLNESS

This post is available in English and Romanian

Boala, fie ca e vorba de o afectiune acuta care supara doar pe moment, sau de o suferinta cronica de durata, ajunge inevitabil sa ne fie partenera de viata tuturor. Unii sunt norocosi si ies repede din relatia cu Boala. Altii raman legati pe viata de Boala intr-o relatie toxica si plina de neprevazut. Cine a avut ghinionul sa se imprieteneasca cu Boala in Romania, stie ca are toate sansele ca suferinta sa sa se dubleze din cauza lipsurilor din sistem. Lipsuri care de ani buni sunt ignorate de cei care conduc Romania prin rotatie. Doar chipul si numele sunt diferite. In esenta, ei sunt aproape toti o apa si un pamant. “Animale” politice (de fapt a-i numi asa este o jignire adusa regnului animal) care nu cunosc omenia si empatia.

The Disease, be it an acute affection that manifests itself for the moment, or a long time chronic illness, is inevitably sometimes a life partner for all of us. Some are lucky and leave this relationship quickly. Others, learn to live with the Disease, in a toxic and restless relationship. Whoever had the misfortune to befriend a Disease in Romania, knows their suffering can be doubled by the lack of conditions in the health system. Shortages that for too long now are purposely ignored by those who rule Romania by rotation. Only their faces and names are different. Essentially, they are one and the same. Political “animals” (calling them this is an offense to the animal kingdom) that do not know humanity and empathy.

Photo by Anna Shvets on Pexels.com

Acum aproape 15 ani am fost diagnosticata cu o boala cronica a tiroidei: Hashimoto. In cuvinte mai simple, este o afectiune autoimuna (corpul isi ataca propriile tesuturi) care nu are leac, ci doar alinare: un stil de viata cat mai sanatos si un hormon sintetic numit levotiroxina. Medicamentele care contin aceasta substanta nu sunt multe in Romania, iar in ultima perioada sunt mai rare chiar si decat policienii cinstiti.

Si asa ajungem la criza de Euthyrox.

15 years ago I have been diagnosed with a chronic thyroid illness: Hashimoto. In simpler words, an autoimmune affection (the body destroys its own tissues) that does not have a cure, only remission with a healthy lifestyle and a synthetic hormone called levothyroxine. The medications containing this substance are not many in Romania, and in the last months have been harder to find than an honest politician.

And this leads us to the Euthyrox crisis.

Photo by Anna Shvets on Pexels.com

Mai des decat mi-as dori, incep sa cred in Romania si in posibilitatile noastre, ca tara si ca popor. Asa a fost si la inceputul crizei generate de COVID-19. La inceput de ianuarie aveam reteta pentru urmatoarea doza de Euthyrox. Medicamentul era greu de gasit inca de pe atunci, dar am avut noroc si i-am dat de urma dupa ce am intrebat in vreo 10 farmacii. Cine se trateaza de multi ani stie ca nu e prima data cand nu se gaseste acest medicament EXTREM DE IMPORTANT (as vrea sa scriu cu litere mari cat zidul chinezesc). Pe atunci, Euthyroxul se dadea si fara reteta, deci as fi putut foarte bine ca pe langa doza recomandata sa iau alte 50 de cutii. La vremea aceea incepusera sa apara incet-incet si semnele unei crize provocate de COVID-19. Cu toate acestea, nici nu mi-a trecut prin cap sa cumpar Euthyrox cu sacosa. Pentru ca sunt si alti bolnavi care au nevoie.
Asa am ajuns in plina situatie de urgenta cu folia de Euthyrox din ce in ce mai goala. Goana dupa medicamente era inca la inceput si nu aparusera stirile si strigatele de ajutor ale bolnavilor. Pentru ca o clinica nu era locul in care mi-as fi dorit sa merg in plina pandemie, am mers in prima farmacie. de data asta fara reteta. Si nu am gasit. Si am mers si in a doua. Si nu am gasit. Si asa am colindat toate farmaciile din apropierea casei (si va rog sa ma credeti ca nu sunt putine). Si nu am gasit.

Si asa ajungem la goana dupa Euthyrox.

More often than I would like, I start to believe in Romania and in our possibilities as a country and as a people. This also happened at the beginning of the COVID-19 crisis. At the beginning of the year, I had a prescription for my next Euthyrox dosage. The medicine was hard to come by even back then, but I was lucky and I found it after asking around in about 10 pharmacies. People that take this medicine for some time now, know that shortages are a common thing for this EXTREMELY IMPORTANT MEDICINE (I would like to write with letters as big as the Chinese Wall). Back then, you could buy Euthyrox even without a prescription, so I could have bought another 50 boxes, considering that the signals of a health crisis were already emerging. Even so, I never considered buying it in large quantities. There are others who need it. This is why in the middle of the emergency state, my Euthyrox was slowly but surely disappearing. The race for this medicine was already starting and no one was complaining just yet. Because I wanted to avoid visiting a clinic during a pandemic, I went to the first pharmacy, this time with no prescription. It was not in stock. And another pharmacy. It was not in stock. And all the pharmacies close to my home (and trust me, I have many pharmacies around). It was not in stock.

And this leads us to the Euthyrox race.

Photo by Anna Shvets on Pexels.com

Am intrat pe net imediat sa caut o farmacie cu medicamentul pe stoc, sa nu bat strazile orasului aiurea, mai ales ca acest lucru era si interzis. Si acela a fost momentul in care am vazut nu mai exista stoc in nicio farmacie din preajma mea. In cel mai mare oras al Romaniei puteai sa numeri pe degete farmaciile care il aveau.
Si totusi nu m-am panicat … inca. Am crezut ca se va rezolva, cum s-a rezolvat si la crizele precedente. Si au mai trecut zile si saptamani.
Intr-un final, mi-am facut programare online la medicul meu, care mi-a eliberat o reteta si mi-a spus ca Accu-Thyrox ar fi o alta varianta. Un medicament mai scump si sub forma de picaturi. Si mi-a mai spus si ca ministerul sanatatii da asigurari ca medicamentele vor reveni in stoc. Ministerul dadea aceste asigurari deja de aproape o luna fara rezultate concrete. Cine sa mai creada ce spune ministerul?

I immediately went online to search for a pharmacy with stocks in, to avoid visiting other neighborhoods, especially since this was forbidden. It was the moment when I saw the stocks are empty in my neighborhood. Here I am in the biggest city of Romania, and I could count on my fingers the pharmacies that were selling it. I did not enter panic mode – not yet. I thought it’s gonna go away like in the past few crises. Some more days and weeks went by. In the end, I scheduled an online consult with my doctor, who wrote me a prescription, and recommended me an alternative: Accu-Thyrox. A liquid medicine, that is more expensive. The doctor also told me that the health ministry assured the medicine will come back. They were saying this one month ago with no results. Who can believe what a minister is saying?

Photo by Rafael Barros on Pexels.com

Cu reteta in mana, si sperand sa gasesc macar unul dintre cele doua medicamente, am batut orasul in plina pandemie. Adica exact ce nu ar fi trebuit sa fac, riscandu-mi sanatatea dar si o amenda pentru incalcarea regulilor de deplasare impuse de situatia de urgenta. Si din nou … nu am gasit. Cand am ajuns acasa m-am bucurat doar pentru ca am scapat fara amenda.
O saptamana mai tarziu, am avut noroc si am gasit medicamentul minune la o farmacie.
Ca sa se spele pe maini, cei care ar trebui sa asigure dreptul cetatenilor la Viata si tratament au invocat repede faptul ca pacientii si-au facut stocuri de medicamente pe vreme de pandemie. Poate s-a intamplat si asta in cateva cazuri, insa singurele stocuri pe care le-am vazut sunt cele din anunturile speculantilor, care profita de incompetenta crasa a autoritatilor si vand Viata la suprapret.
Ei ar putea fi cu usurinta depistati si pedpsiti. Asta intr-o tara … ca afara.
Alte stocuri pe care le vedem sunt cele din depozitele cu medicamente din Romania. Ele exista acolo, insa nu merg in Romania, iau acelasi drum pe care il iau si multi romani, care s-au saturat de aceasta mizerie. Merg in Vest, unde esti tratat ca un om. Apropo, acolo Euthyrox are un pret de trei, patru, chiar si 10 ori mai mare decat la noi. Si asa ajungem la “frumusetea” acestei povesti. Romania se lauda cu cel mai mic pret al medicamentelor din Uniunea Europeana. Insa tocmai din cauza acestui pret, oamenii aflati intr-o relatie de lunga durata cu Boala, nu au acces la medicamente. Si va rog sa ma credeti, ca nu am cerut sa cumpar Euthyrox cu doi euro. Vreau sa il cumpar si cu 10. Vreau sa imi cumpar Viata. Orice om care a trecut vreodata printr-o boala stie cat de scumpa e Sanatatea, si la propriu, si la figurat.

I took to the streets with my prescription in my hand to try and find one of the two medicines. This is exactly what I should not do in a pandemic, risking my health and a fine for breaking the emergency state rules. And again … it was not in stock. When I got home, I was only happy because I got away without a fine.

One week later, I got lucky, and I found the miracle cure at a pharmacy.

To take the responsibility off their shoulders, the ones who should watch for the well being of the citizens, for their rights to Health and Life, found a perfect excuse. People stocked medicine during the pandemic. Maybe this happened in a few instances, but the only stocks I saw were on the black market. People that take advantage of the administration’s lack of competence and sell Life at an overprice. They could be easily found and punished, in a normal country.

Other stocks are in the medicine deposits from Romania. The pills are there, but they take the same path many Romanians choose, because of the mess we are living in. The go West, where you are treated as a human being. By the way there, Euthyrox is found at a bigger price, double, or even ten times higher.

And this is how we reach the “beautiful” part of this story. Romania boasts of having the smallest medicine price in the European Union. And it’s just because of this price that people who are living in a toxic relationship with a Disease, are not able to buy medicine. And please believe me when I say that I did not ask to buy Euthyrox with two Euros. I would buy it for 10 Euros. I want to buy Life. Every human that has ever had a date with a Disease knows just how important, expensive, and precious Health is.

Photo by Miguel Á. Padriñán on Pexels.com

Aceasta este doar povestea Euthyrox. In aceeasi situatie se afla un numar enorm de romani. Cel putin 600 de medicamente au fost retrase din Romania din cauza acestei politici a autoritatilor. Inclusiv tratamente oncologice. Si urmeaza si altele.
Si cum se intampla in orice poveste din Romania, in loc ca societatea sa fie alaturi de oamenii care trec printr-o criza care le poate lasa sechele pe viata, s-au facut tabere. Pentru ca solidaritatea si spiritul civic au pornit si ele pe drumul spre Vest.
Mesaje de genul “nu am vazut pe nimeni sa planga atunci cand Romania a scazut pretul la medicamente” sunt peste tot ca raspuns la strigatul de ajutor al bolnavilor. Nu vreau medicament gratis, nu vreau medicament ieftin, pur si simplu vreau ACCES la medicament. Chiar daca asta inseamna sa nu mai fie vandut cu titlu de glorie la cel mai mic pret.
Iar aceasta poveste face parte din constelatia de motive pentru care ii vedeti des pe romani in Vest. Nu doar pe cei care ne fac tara de ras, ci si pe cei muncitori, cinstiti, geniali si discreti.

And this is just the Euthyrox story. A huge number of Romanians are dealing with the same situation. At least 600 medicines were withdrawn from Romania because of the price policy. Including oncological treatments. And many more are coming. And like any normal situation in Romania, instead of the society coming together for the sick people who are facing a crisis that can leave them scarred for life, people are divided into camps. Because solidarity and civic sense also took the road to the West. Messages saying: “I did not see anyone crying when Romania lowered the medicine price” are everywhere, as an answer to the ones that cry for help. I do not want a free medicine, I do not want a cheap medicine, I just want ACCESS to the medicine. Even if this means not selling it with a “glory title” at the smallest price. This is one of the million reasons why you see Romanians choosing to live in the West. Not just the ones that embarrass us, but the ones that are working, and honest, brilliant, and discreet.

Photo by Pixabay on Pexels.com

In incheiere, puteti vedea ce pateste un bolnav de tiroida dupa o perioada in care nu isi ia medicamentele. Rapiditatea cu care apar simptomele difera de la om la om. Desigur, cel mai repede sunt afectati cei care, din diverse motive nu mai au deloc glanda tiroida. In cazul altora, tiroida functioneaza, dar pe avarii, din cauza diverselor afectiuni:

In the end, you can see what happens to the thyroid patients that are not taking the medicine. The rapidity of the symptoms differs from one person to another. Of course, the most affected ones are patients who, for any reason no longer have a thyroid. In some other cases, the thyroid still works, but with a reduced capacity, because of certain health issues:

Photo by Anna Shvets on Pexels.com
  • Probleme cu tensiunea
  • Colesterol marit, care nu scade cu tratament si risc crescut de boala cardiaca
  • Temperatura scazuta si senzatie constanta de frig
  • Oboseala, slabiciune musculara si dureri ale incheieturilor
  • Depresie
  • Probleme de memorie
  • Ingrasare, incapacitate de a slabi cu regim si sport
  • Infertilitate, avort spontan, nasterea unui copil mort, travaliu prematur
  • Neregularitati ale ciclului menstrual
  • Pierderea sau reducerea apetitului sexual
  • Constipatie
  • Pierderea parului
  • Umflarea mainilor, picioarele si a fetei
  • Cresterea sau aparitia nodulilor tiroidieni si a gusei
  • Sistem imunitar scazut
  • In lipsa pe termen lung a tratamentului, instalarea comei mixedematoasa, care poate duce la deces

In cazul celor care au avut cancer tiroidian, afectiunea poate recidiva in lipsa tratamentului.

  • Blood pressure irregularities
  • Elevated cholesterol, including treatment-resistant high cholesterol and increased risk of heart disease
  • Low body temperature; feeling perpetually cold
  • Fatigue, muscle weakness, or joint pain
  • Depression
  • Memory problems
  • Weight gain; inability to lose weight despite diet and exercise
  • Infertility, miscarriage, stillbirth, or premature labor
  • Menstrual irregularities
  • Loss or reduction of sex drive
  • Constipation
  • Hair loss
  • Swollen hands, feet, and face
  • Growth of thyroid nodules, increasing goiter size
  • Increased risk of infection
  • Ultimately, if you are deprived of thyroid hormone for a long period of time, you face the risk of a very dangerous condition—myxedema coma—which can ultimately be fatal.

Of particular importance, if you have had thyroid cancer, you can actually face an increased risk of thyroid cancer recurrence if you don’t take your medication.

5 thoughts on “LIVING WITH A CHRONIC ILLNESS

  1. I was first diagnosed with an underactive thyroid and prescribed Levothyroxine by a Romanian doctor (I then lived in Romania), so I’ve taken it daily ever since (about 22 years). Of course I had to pay for it then but it was cheap. In the rare occasions I could not take it the most obvious consequence was getting tired, weary, lethargic. I never went without it for longer than a couple of weeks.
    Here in the UK I do not pay for it because of my age but younger people could pay about £9 for three months supply but it could be £9/month if the doctor insists on prescribing one month at a time.
    We are of course lucky in having the UK National Health System (NHS) – one of my daily medications costs £1,500-£2,000 a month but I do not pay and if I did it would be maximum £9/month.
    I always found Romanian doctors excellent but the ‘health system’, such as it is, absolute rubbish.
    The most recent time in Romanian, two years ago, it was obvious pharmacies had become big business – there was one on almost every corner!

    Liked by 1 person

    1. Health issues are worse enough, and not being able to find a trivial medicine is awful. Especially since as you mention, in Romania, you can see two or even three pharmacies next to another.
      Another paradox is that yes, the doctors are amazing, but they also struggle with the system, the same as the patients.
      You are lucky to have a national health system that provides for the patients. As for me, these are the “perks” of choosing to stay in a country led by a highly corrupted system. Take care, and stay healthy!

      Liked by 1 person

  2. I do sincerely hope the people responsible for maintaining the health system take a note of this. You can very well send this blog as is to the concerned authorities, to as many people as possible. Hopefully somebody’s conscience would be rattled by this. Till then here’s wishing you and everybody in Romania lots of love and strength.

    Take care 🙂

    Liked by 1 person

    1. Petitions have been made, even the media got involved and … nothing. This is an ongoing situation for years and years. I am afraid there is no solution. To be honest, I don’t even know why I wrote this. Maybe it was therapeutic in a way, or a message for others that are going through this to know they are not alone. Thanks for stopping by and stay safe!

      Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s