Olivia got her annual blood work done today! She had to fast and that alone was stressful! But it’s done for a year! After she had some grinch pancakes at IHOP next door! Hopefully everything comes back normal! #cysticfibrosis
WHY! Why does this happen to me all the time!? I don’t understand what I “sound like”?! I don’t share that I have CF at work because it’s my choice and it’s not my coworkers business. This is not a new conversation for me. I cough, people question me, and then people don’t believe me that I’m fine. It is so freaking frustrating I can’t even explain. *To note, while this is a real conversation that just happened I changed my coworkers name*. #cf#cysticfibrosis#cfirl#letsgetrealaboutcf#frustrated#cfsucks#annoyingcoworkers
I am officially IV free! (Well I have been for the last week but didn’t feel much like writing a post🙃) I finished three weeks out of the total four because 1. I felt like complete shite and 2. I’m due to go away on holiday next week for a week!! Since coming off of the IVs I’ve surprisingly felt more like myself, I’ve been excited to wake up in the morning instead of feeling the constant dread about waking up and still feeling crap! I can’t really remember the last time that, that happened so it’s a victory in itself😂. I’ve really got my fingers crossed that this good streak continues over Christmas and New Year so that I can finally have a Christmas without being on treatment (it would be the first time in 3 years😬). #cysticfibrosis
De är inte bara mina arvingar, de är min motivation också. Jag vill inte ens veta hur jag hade mått om jag inte stod på orkambi. Ska jag dra den långa versionen? Jag kör väl. Efter mina två täta infektioner som bägge två krävde IV antibiotika om sammanlagt 20 dagar på en månad och därefter 2 veckors återhämtning så fick jag ju dessutom därefter mycoplasma. Vilket jag nu blivit behandlad för men som vi inte riktigt vet om behandlingen fungerat då jag avslutade antibiotikan igår och idag börjat känna mej risig igen (för att inte tala om den psykiska press detta är). Så idag vart de vc för att utesluta att det skulle handla om strep-a eller liknande och de gjorde de ju inte. Fått upp blod från lungorna också. Så nu ska läkaren ringa mig imorgon för att diskutera hur vi går vidare.
PS: jag mår riktigt bra på orkambi, märker ju hur mkt bättre lungorna mår nu än förut, de är sån otrolig skillnad att jag inte nog kan tacka forskningen och alla som pumpat in pengar till den för att möjliggöra detta. Utan orkambin som grund hade detta vart riktigt jävla vidrigt. Ds.
Dziś Europejski Dzień Świadomości Mukowiscydozy. Większości choroba ta kojarzy się głównie z zaburzeniami układu oddechowego, jednak jest to choroba ogólnoustrojowa, dotykająca wielu narządów. Jednym z pierwszych objawów, które można zaobserwować już u najmłodszych dotkniętych tą chorobą, jest nieprawidłowa praca układu pokarmowego. Zewnatrzwydzielnicza niewydolność trzustki zaburza wchłanianie, co w konsekwencji prowadzi do utrudnionego przybierania na wadze a także powstawania niedoborów witamin, zwłaszcza tych rozpuszczalnych w tłuszczach. Zachęcamy do zapoznania się z grafiką PTWM.
If you haven't already head on over to @cfnewstoday !!! I'm being featured today as I talk a little about my journey as a woman with #cysticfibrosis ! Also I'm looking into regrowing my own brand apart of @stayingsalty65 and am curious about what things you guys would be interested in me talking about or doing?!
Hiiii it’s your weekly Wednesday health update! The long and short of it is, my lung function is currently pretty plateaued in the mid 50’s (I’m currently at 56%, was at 54% a week ago, and 59% when I left the hospital). However, my lung VOLUME is getting better, meaning my airways are getting cleared out so I can get more air in. At this point it sounds like my function is where it’s at because my lungs got very weak during this sickness and now I need to work on strengthening them back up. I am feeling better in general, but it’s pretty day-to-day. I’ve been struggling with feeling pressure to get better, because I know that my loved ones want that, and obviously I do too, but it’s a process. So if I’m short with anyone, or just don’t respond when you ask if I’m doing better, I apologize. I’m just trying to mentally adjust and figure out what my new “normal” needs to be in regards to taking care of my health. I have to trust the process that my body needs to take right now, and fully focusing on it (especially by taking leave at work, which I hate) is a shitty but necessary battle for me. If I ain’t got my health, I ain’t got nothing, right?
For the past 3 weeks, I’ve been on one IV antibiotic (Ceftaz) and 2 oral antibiotics (Zyvox and Cipro), and for the past week we added a steroid (Prednisone). I concocted a new treatment plan last night and my doctors agreed to it this morning. Going off Ceftaz and trading it for IV Meropenem (the med I’m on for the entirety of my IV antibiotic treatments usually), and going off the Cipro because holy damn I cannot handle the nausea, heartburn, and muscle aches anymore lol. The prednisone isn’t treating me that great either (hello, major insomnia & not falling asleep before 5:30 am, and far too intense emotions), but I’m getting in a routine with it and figuring out how to work around it.
All in all, yesterday felt like a turning point, I am feeling better, it’s just taking its sweet, sweet time. If you read this far, I give you props lol and I hope everyone has a great long weekend ahead of them ❤️
If you guys are looking for a special gift for someone or yourself, take a look at @jwlsofficial watches. JWLS donates a portion of all proceeds to furthering research into curing cystic fibrosis – as well as supporting individuals who are currently struggling, smiling, crying, and loving through the disease. ❤️ #happiness#cysticfibrosisfoundation#cysticfibrosis#watchesofinstagram
Today is Woman Crush Wednesday! Our #WCW is Miranda who’s 24 and currently living in Miami. Here are 3 things @mirandalynn65 wants you to know about her life with CF:
🦄 CF has taught me not only how important it is to advocate for myself, but how important it is that I know myself, my limitations, and my boundaries. I've been forced to know both my body and mind to a depth I don't think I ever would have if my life wasn't dependent on me knowing when something is wrong. Because of this it's helped me build up my own voice: that as a woman with chronic medical conditions, I need to be as loud and as clear as possible, because we are not always taken as seriously or will be taken advantage of more.
🦄 Since high school I have been involved with multiple foundations from the CFF, organ donation, and the Dreams Come True Foundation @dctofla. I want to bring awareness to not only CF, but other illnesses. To me, our voices and stories are incredibly important. Whether its talking on the radio, public speaking, writing, and making videos.
🦄 The older I have gotten the more difficult it is to keep sick life and life outside of clinic appointments and treatments apart. It's been with my recent move to Miami that I've been able to not only improve my health, but I've been reminded that I need to take a moment each day away from that side of my life to make sure I am actually living the life I am working so hard to save. Tell us in the comments below how you advocate for yourself!
And the results are in... Its me!! I'm the carrier of the Cystic Fibrosis Gene! I'm not sure whether to feel sad? Or guilty that I've passed this onto Penny! Not that her being a carrier will effect her health at all! Most of all I am relieved! Relieved knowing that Chris and I can extend our family when we are ready and that we can give this beauty some siblings! #igmama#babygirl#mama#cysticfibrosis#genetics
Diolch i #depotcardiff am roi Gwobr Raffl hael o'r fath i 6 PERSON, rydym yn gwerthfawrogi eich cefnogaeth! Bydd yn ofynnol i'r ENILLYDD siarad â Stephanie-Mayy i DERBYN eu gwobr. 🤗 .
Rhieni a staff: Mae tocynnau Raffl DAL ar werth. Os gwelwch yn dda gael EICH teuluoedd a'ch ffrindiau i gymryd rhan i godi cymaint ag y gallwn i'n cyfaill gwych Kim. 💯😊 •
Thank you to @depotcardiff for donating such a generous Raffle Prize for 6 PEOPLE, we really appreciate your support! The #WINNER will be required to speak with Stephanie-Mayy to REDEEM their prize. 🤗 .
Parents & staff: Raffle tickets are STILL on sale. Please get YOUR families & friends involved to raise as much as we can for our wonderful friend Kim. 💯😊 •
Cystic fibrosis lungs!
This is a sample of lungs affected by cystic fibrosis removed from Kara, a young female that was suffering from an end-stage lung disease of cystic fibrosis and was completely oxygen dependent.
Cystic fibrosis is an inherited disease of the exocrine glands caused by a mutation in the CF transmembrane conductance regulator gene. This defect results in tenacious secretions accumulating in ducts throughout the body, such as lungs, pancreas, and vas deferens.
In simpler terms, characterized by the buildup of thick, sticky mucus that can damage the respiratory and digestive systems.
This abnormal mucus and defective mucociliary clearance of inspissated secretions permits accumulation of debris and bacteria in the airway, resulting in recurrent sinopulmonary infections. These infections cause severe acute pulmonary exacerbation, as evidenced by hypoxia and respiratory distress. Over time, it results in permanent lung damage, including the formation of scar tissue (fibrosis) and cysts in the lungs.
On March 10, 2017, she received a double lung transplant. A lung transplant is not a cure though, she still has CF. This picture shows CF lungs that were extremely diseased. She lived with those lungs for 34 years. She couldn’t breathe, and coughed up blood all the time. Back years ago, kids with CF didn’t live to see their teenage years.The life span with a CF’er is around 50, some people are older than 50 and still fighting.
Credit to @kara.lynette83
🌹Day 19🌹Dear CF, thank you for showing me what is truly important. Having something that most people don’t give a second thought to taken away from me has put a lot into perspective. I never thought my health would be slipping through my fingers this easily, but you’ve proved me wrong. Each organ in my body is struggling to function, leaving me at your mercy. But there are days where I am in less pain and can enjoy my time and those around me!
So many times, people can be caught up in superficial things. But I’ve learned that anything unnecessary to survival that money can buy isn’t important (other than travel because that’s definitely a necessity 😏). Family, faith, love, friends, time...some of the most precious things in my life can not be taken away by you. Of course you can shorten my time, but how it is spent will never be up to you.
It makes me sad seeing people become victim to the things of this world. Always trying to prove their worth by the clothes they wear or the car they drive. Financial success is nothing to be belittled, except when it is blinding out the things unable to be charged to a credit card.
So CF, thank you for teaching me an important life lesson most people don’t have the privilege of learning until it’s too late.
Consistently making good choices for the air we breathe at home will have significant health impact in the long run 🏠
For example, monitoring CO2 emissions will help you avoid fatigue, drowsiness, and dizziness. It can also dramatically improve your productivity.
Always take the right action. Know the air you breathe now at $50 off. Sale ends Nov 23.
Get it now before it runs out!
When you have a warhammer game at 7pm, dinner with the family at 4pm but you also got to work today.
Got about half my army in it,
Should be a nice time all day.
*except that I forgot my dice!
Well, I suppose that I could just buy another cube...
As much as I love comfort food now it’s cold I also definitely crave the green stuff to an extent...anyone else?! missing the fresh tastes of summer maybe?! 🥣 This smashed pea, spinach and chicken risotto is one of my faves, makes me feel healthy and it’s got the added bonus that all the veg is straight outa the freezer so you don’t even have to leave the house! 💚❄️
A perfect Sunday in Montevideo, Uruguay 🇺🇾 A new chapter of our trip began for us today, as we left Montevideo yesterday, where we had stayed for about 2 weeks. In this new chapter we are taking part in our very first „Workaway“ experience! 😍 “Workaway" is a program that enables travelers to take part in local projects in exchange for board and lodging. The cool thing about this is that you can learn a lot, meet great people and just collect unique experiences, while at the same time helping out at the places you travel to. In the next few days I will be telling you all about the project we are currently taking part in. 😊
Before coming here to the region of Maldonado in the South East of Uruguay we had a perfect Sunday with new friends, beautiful weather, a stroll on the Tristán Narvaja market, an afternoon at the very chilled-out Cerveceria Malafama with live music and a great home-cooked vegetable curry to top it all off. 😉 [contains unpaid advertisement due to reference]
Link en nuestra bio
Os guste o no el fútbol…1⚽️⚽️ seguro que os acordáis del gran Mijatovic! ⬆️Aquel jugador yugoslavo que jugó en el Madrid, Valencia…Autor del famoso gol que le dio al Madrid su séptima champions. 🔴Mijatovic tuvo un hijo con discapacidad severa que coincidió con su época TOP como jugador.🔴 Hace poco concedió esta entrevista al Mundo donde expresaba algo que conocemos muy bien➡️no importa el éxito que puedas tener en tu vida, porque lo sacrificarías todo en un abrir y cerrar de ojos si a cambio tu hijx tuviera salud.
Futbola gustatzen bazaizue edo ez ...⚽️⚽️ Mijatovic bikaina gogoratuko duzuela ziur gaude!⬆️ Madrilen, Valentzian, etabar taldeetan jolastu zuen jugoslaviako jokalaria ... Real Madrilen gol ospetsua burutu zuen, zazpigarren champions-a irabaztera lagunduz. 🔴Mijatovicen semea minusbaliotasun larria du eta bera jokalari top momentuarekin bat egin zuen. 🔴Berriki elkarrizketa hau eman dio El Mundon eta oso ongi dakigun zerbait adierazi zuen➡️ ez du axola zein arrakastatsua zaren bizitzan, dena sakrifatuko luke bere semearen osasuna lortzeko.
I do not know if you like or not futbol soccer⚽️⚽️, but for sure you remember Mijatovic!!⬆️ That Yugolavian futbol player who was playing in the Real Madrid and in the Valencia futbol clubs. He scored the goal which gave to Real Madrid the seventh European Champions Cup. 🔴Mijatovic had a son with a severe disability while Mijatovic was at the peak of his carrer🔴. Some time ago Mijatovic was interviewed by El Mundo newspaper and he expressed something we know very well➡️ it does not matter how much successful you are, because you would sacrifice it in a blink of an eye if your son/daughter was healthy.
Cystic fibrosis can be a challenge despite all the smiles and laughs. It can be tiring and make you rearrange your life when you don’t want to, in the past few weeks my school has advise me to take 2/5 days off of school every week. I’m a very stubborn person at times and was very much so NOT on board. I just wanted to go to school everyday with my friends, not like I already was but I at least had more of a “choice” now I have designated days to have breaks and rest. The idea of this was for my best interest and health wise it may end up being great and let me reboot throughout the week. Mentally it took a drain on me, I was freaking out about missing school and not doing work and I just want(ed) to be able to attend school everyday and be the regular miserable teenager who wish they didn’t have to go to school but I’m the opposite, I try my best to go as often as I can. I will continue to try and get my health to the point where I can go every day with maybe 1 or 2 missed days a week. I am ever so grateful for my school and teachers for always being supportive and having my best interest at heart. Despite struggles I have it very good and am very supported within my school.
What accommodations did/do you get from your school for your cystic fibrosis( or other illness)? Be grateful for breathing and for the thing you do have💜#cysticfibrosis#cysticfibrosisawareness#cysticacnetreatment#cysticfibrosisfighter#cysticfibrosislife#cysticfibrosiscanada
Last IVs then we are out of here...😃 apart from loosing weight, lung function has improved 16% within a month, great what physio and medication can do. Time to get him fattened up again. Happy mummy 🤗
21 ноября - Европейский день Муковисцидоза
European Cystic Fibrosis AwarenessDay, ECFAD
Это мои племянники ,это дети,о которых нельзя молчать 🖤
Текст их прекрасной мамы @leylamoroz . Лучше неё ни расскажет никто.
Хотелось бы мне сказать, что жизнь людей с #МВ - это веселое приключение, но это будет ложь.
Это испытание. Это борьба. Это труд.
Это тысячи опасностей. Это изматывающая неизвестность и ожидание. .
Я хочу только одного, чтобы мои дети жили. Не выживали в системе тотального равнодушия чиновников, не задыхались от нехватки кислорода, не стояли в очереди на пересадку. Я мечтаю увидеть их фотографии с выпускных и свадеб, а не в ленте фондов, собирающих деньги на жизненно необходимые антибиотики или энтеральное питание. Я загадываю, какой будет моя старость в окружении внуков. И не хочу верить, что это лишь воздушные замки. .
С муковисцидозом в нашей стране как с семейным положением вконтакте у неопределившейся девушки - все сложно. С ним вообще сложно, а у нас - особенно. Эдакий квест на стойкость и упорство. На умение пробивать лбом стены. .
Я - миротворец. Война - не мое призвание. Но у меня есть враг - враг беспощадный, жестокий, не прощающий ошибок. #муковисцидоз . И я полирую лоб, наращиваю носорожью шкуру и каждый день иду в бой. Мой верный конь - ингалятор, оружие - антибиотики, броня - антисептики. Мое знамя - моя любовь. .
У меня нет задорных лозунгов.
Нет великой миссии.
Я не умею воевать. .
Но мне некуда отступать.
За моей спиной мои дети. .
THANKFUL. Miller’s last culture came back and we successfully got rid of pseudomonas! 🙌🏻 Thank you for praying for him (and us) during his treatments. Here is more proof that he is the happiest baby that ever was. And yes, the polka dots are being used as a makeshift baby gate. 👌🏻 #crawler#missionmiller#cysticfibrosis#goodbyetobi