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Love this quote 💜 "You never know how strong you are until being strong is the only choice you have." Not ALL people achieve it! You'll find people that are faced with tough times and they wither and give up. Rest if you need to. Cry if you must, but for fucks sake, get back up and show life who's boss 💪
#IBDSuperHeroes share - @chronically_successful:
Having a really bad couple of weeks health wise and some personal problems and therefore in turn struggling mentally and emotionally... 😞
Trying to remind myself that I'm tough and will get through this little blip... But really feeling like I'm currently just existing and not living... 💔
Anyone else who's on immune suppressants, what do you do to help you not catch every single bug and infection?! I need to work and be around people so avoiding socialising is not an option 🤦🏼♀️ #Crohns#Colitis#IBD#CrohnsDisease#UlcerativeColitis#InflammatoryBowelDisease#CureIBD#IBDawareness#IBDproblems#IBDwarrior#IBDfighter
Hi it is I!👋 I don’t post a lot of photo’s of myself on here.. Simply because I like to take photo’s of nature and my pets and my friends and my hospital life more than photo’s of myself😋 But I had a photo shoot for the upcoming National Crohns & Colitis Awareness day campaign last Friday, and took this selfie afterwards. The #butyoudontlooksick selfie haha.. You can have had 34 surgeries the last 6 years, be on very heavy medication, have a hospital life, always be in pain and always feel tired and still don’t look sick. The most of us don’t look sick. The ones that do look sick are the ones in movies, and people who are on certain medication like steroids, or chemo. But a lot of chemo’s don’t always make you bald, they make your hair thinner. And you get skin problems that aren’t always visible for others. The ones who have a cold🤧, the ones that stop eating, and the ones that are visibly disabled, like in a wheelchair. The rest of us don’t show any sign of sickness🤗😜 And yes, we too wear makes-up. Even to the hospital appointments. Because when you already feel sick inside, you want to look good on the outside. And the hospital visits are our day out!🤗 Haha. And all the side-effects.. we just hide them😏 I know this all can be very confusing for the outside world, and it’s even confusing for ourselves sometimes. Because sometimes you do want people to notice how horrible you feel. But you don’t want a pity party. And if you’re not sure and want to know how we are doing? Just ask us about our day😊 Because we live from day to day. And everyday can be totally different. We just don’t know.
In the process of trying to get my shit together so I can go for surgery this year with no stress to come out to!
This has involves getting everything bought and paid for that needed sorting this year and then saving up so I can pay the bills while I'm off work.
Things started well but have gone a little pear shaped from there 😂
Couldn't find a tv stand like I wanted. Lady at work was getting rid of one in the wrong colour, but was solid wood so the plan was to sand and stain it. Accidently bought gloss which we didn't realise until we painted the whole thing and the shine didn't dissapear when dry 😅 that was then scraped off, now it has dents in and looks old a crappy 😑 but it's ready to stained now WITHOUT gloss 🎉 and the shit bit will actually be covered by the TV anyway so... "meh".
Ordered washer dryer. To be delivered 2 Sundays ago. Sold mine the Saturday, then realised I actually ordered it for a whole month away - May. So, that was cancelled because the earliest it could come was 3 wks and 2 days time. Ordered a different one which came last Thursday. Only, this shit heap is fucked and the dryer doesn't work, and my towels came out dripping wet after the drain and spin... So tomorrow an exchange is happening for a completely different one again.
The bed came yesterday. So far, so good! No issues are apparent yet (touch wood). Other than the fact it's really low and will be hard so get out of straight after surgery. I know this because I've had 6 over the last few years and have had a low bed and a high bed during that time.
Hopefully, by the end of the week the TV stand will be finished and a working washer dryer will be in place so the only thing I need to focus on now is saving pennies!
Good friends are like stars, we don’t always see them but we know they are there 🌟
My beautiful, amazing, courageous and most thoughtful friend is going through her own health struggle, and we haven’t seen each other much lately because we’ve both been lacking in energy, but she is my inspiration in dealing with chronic illness and is always there for me. I am ever so grateful for you, thank you @msmummyofone 😘
Isn’t it amazing how a kind gesture like this can really perk up your day! Had my Simponi loading dose this morning then went to GP for smear test, then got stuck between the Simponi nurse and rheumatology nurse in a bit of a row over maintenance dose... I had just started to get a real slump in energy and a bad headache when these flowers were delivered, brightened up my world. Some friends are really more like family - except most of my family just aren’t as kind or thoughtful 😂
Hands up if you wish you could kiss all your food! 🙋🏽♀️💋 This week is #WorldAllergyWeek and I spoke to 4 people about the realities of living with a life threatening allergy for @metro.co.uk and it was extremely enlightening. Whilst the increased awareness in gut health and intolerances is SO important (like seriously, it’s amazing), writing this article made me realise the importance in understanding the difference between allergies and intolerances. The people I spoke to could suffer an anaphylactic shock from food groups like milk and gluten and this is something there is so little awareness about. It can be fatal, which is terrifying. Massive thank you to @julianne.ponan, @freefromfarm & @sophiabfx for speaking to me and the link to the piece is in my bio 🔝Let’s open up the convo about allergies too! #abellyfulloffood#tuesdaythoughts
'The inner workings of an untamed mind' written by Danni Little is a magical handcrafted poetry book filled with a non cliche way about healing. Words for your inner introvert that don't invalidate the way you feel. A book that emphasizes how important emotional intelligence is and gives you time & space to heal in the best way for you. Through the lens of her own traumas in dealing with chronic illness, near death experiences, emotional abuse & neglect. Danni Little hopes to assure people that it's ok to feel.. your feelings are valid.. what you can do to help pull yourself through while you are coping & what you do after you feel are what matter most.. being able to communicate your feelings in an adult manner is very important & if we could just learn to unlearn our learned behaviors & meet less shitty people then the world would be a better place.
For the readers who get inspired when they read, like me, I've included a notes section in the back specifically for you to write your truths. •
7 Days till the first exam and the paper is pilling up 📔 revision lectures today calmed a few of my nerves, but can’t afford to get complacent!
Stress has been a catalyst for flare ups in the past so need to maintain the calm.
THIS was an accidental dessert and I’m so happy about it! I tried to make a chocolate pudding and instead I got some delicious chocolate flan like something or other. I think I’ll need a better name...🧐
Although I don’t have an exact recipe and hope I can recreate it again, the basics are a cup of full fat coconut milk, @greatlakesgelatin gelatin (red can), maple syrup, vanilla, salt and whatever flavoring you want (I put a little @doterra peppermint). Pour into molds, refrigerate for 3 hours, remove from mold (I just used a small ice cream bowl), top with some @co_yo_usa yogurt and drizzle with your favorite melted chocolate!
Yesterday was the first time I was back in harness and out in public working since Kathryn fell three weeks ago. Not too sure I was happy about it. But then Tabitha came to check on Kathryn and play with me. I had forgotten about the perks of my job. Lots of lovin' from lots of cool people! Strangers aren't supposed to pet me when I'm working, but sometimes Kathryn makes an exception for medical personnel while we're waiting. She has a policy of always keeping doctors and nurses happy so they give her good news and don't hurt her during procedures ;) Meanwhile, we're doing a #migrainehangover day today after the doctor appts yesterday. Lights are a trigger for Kathryn, and there were a lot of Bright Lights yesterday. Ankle sprain is healing nicely, but foot's still broken-- boot another 4-6 weeks. Wrist improving faster--splint another 2 weeks full time, and then some PT, and another 2 weeks as needed. More x-rays of both in 4 weeks. There was some concern about a possible blood clot in her leg, so she was sent for a sonogram. Good good news is no blood clot. But I was trying to alert her to that migraine while the technician was doing the test. I couldn't get to her though so I was pretty fidgety.
I go from feeling super sick to being ridiculously hungry... sadly it’s not easy to find snacks that I can eat so I’m experimenting with banana muffins made with oats, oat milk, agave and cacao 🌱🍪 so far they seem to be okay 🙌🏼
help needed: today i was able to avoid inpatient, as, to be frank, my doctor doesnt know what to do with me at the moment.
im struggling, a lot. im vomiting more than i ever have and have been having serious complications with bowel issues. i cannot keep hydrated or stay out of the hospital/ER, so we've made the decision to keep me at home and have home care come to my house every day at least once to check in on me, provide IV fluids/nutrition and pain/nausea control.
hopefully this quick surgery will happen in the next two days and i will begin daily home health care, along with physical therapy at home. ill also be doing at home PT to help me regain so much of the strength ive lost, as much of April has been spent in the hospital.
because of this, ive decided to keep my amazon wishlist open a little while longer, as ive added some things that will help during the next few weeks and after my surgery.
http://a.co/hfscFId - my amazon wishlist link(also available in my bio), if you're able to help at all. thank you SO much to those of you who have contributed. you are truly making my life so much easier and financially more stable.
thank you for your continued support, always.
*Day 2 Intro diet*
Chicken Soup, 3 Eggs
Dinner: Puréed carrots, 3 beef patty’s Chicken Soup
Today I cut out the grape gelatine because yesterday I the high sugar content made me crash and some have told me the grape juice is no longer legal which might explain why I felt so rough after having it!
"Alta Médica" - Domingo 22/04
EM CASA!!! 😉
É amiguinhos, voltei, meio costurado, remendado e vazando um pouco de água do dreno mas, com um instestino novinho em folha.
Neste ultimo domingo dia 22/04 tive minha aguardada alta medica. Não consegui postar nada antes porque cheguei tarde em casa e realmente estava bem cansando e ainda assimilando tudo que havia se passado em minha vida até aquele momento.
Agora, com a cabeça no lugar, já posso aos poucos retornar as minhas rotinas.
Sobre a minha recuperação e internação...
Como disse meu amigo: "Recuperação estilo Wolverine"
Realmente fiquei bastante surpreso com esse prazo e com a evolução da minha recuperação, apenas 4 dias e meio de internação, e só não fui dispensado antes, no sabado, porque "não me esforcei muito para andar e me locomover", estava sentindo desconfortos e dores, mas segundo minha medica era tudo "frescura" e "preguiça" e inclusive fui chamado de "Bebezão" pela minha medica por isso, ela simplesmente pegou meu braço, me fez andar todo o corredor do hospital e foi me dando bronca por mais de 20 minutos dissendo para não ser "preguiçoso" e nem me entregar.Lição aprendida com sucesso.
Agora estou bem e me recuperando lentamente, mas progressivamente.
Confesso que esta sendo "bem chatinho" o pós operatório, mas nada que não se possa superar com dedicação, luta, cuidados, disciplina e coragem.Acima de tudo, estou extremamente feliz por tudo ter ocorrido muito bem.
Impossivel deixar de agradecer ao Hospital Samaritano de SP por todo o auxilio, estrutura e suporte.
A todos os funcionarios e enfermeiras que me auxiliaram nestes dias. A todos os medicos e em especial, a minha medica Dra. Miriam, que realizou minha operação e me acompanha a tantos anos. Obrigado de coração por tudo.
Agradeço demais a todas as pessoas que me enviaram mensagens desejando melhoras em minha recuperação. Obrigado aos meus familiares, amigos, colegas, conhecidos e desconhecidos que me seguem e acompanham, sempre desejando o meu melhor.
A vocês que tem Doença Crohn...
Não desista, não se entregue, respeite tua doença mas...
JAMAIS tenha medo.
Lute por tua felicidade.
Obrigado a todos 😘
Beijos do Magrelo
Who wants to join me on November 3rd for #partyonabike ? 🚴♀️🚴♀️🚴♀️ I am setting up a team now for an event that raises money for the Orange County Crohn’s & Colitis Foundation!
Each team is made up of 4 people, and each person will ride for 30 minutes on a cycling bike. The event has music, food and drink vendors, and is led by #spin4 instructors! 🌮🍹🎸
I am going to get my own bike this year, so I need to find 3 more incredible teammates to help me raise money, energy and awareness!! Each member of the team will work to raise $250 towards the Crohn’s & Colitis Foundation.
I am not only a participant this year, but I am also a member of the committee. If anyone wants to help out in any way, by being a participant, through vendor/raffle donations, or with your love and support, then please reach out to me! 💖
Let’s spin4 a cure!
#savethedate November 3, 2018