"But you look fine"... Ahh invisible illnesses where all the craps happening on the inside! I assure you it's there and happening. The most intense migraine, brain pain and intense headache going on inside atm! Pain killers won't even touch the side of this either! Worked thru it because there's not point not. Totally keen for my next infusion and meds. From what I understand the last month is tough. Just a little over a month to go, so trying to stay tough Can feel my body saying "yup, time to reup please". Compared to previous treatments, this one has more pluses than not though, so it's a small price to pay I guess. No new legions on my last mri of brain so that's good. Just feeling a bit beaten up at the moment. Need 18 hours sleep and some 🍩 me thinks... 😁 .
Såhär ser man ut i håret efter 3 EEG på rad. Det tog många tvättar innan allt lim var borta. För att dom skulle kunna utföra en EEG undersökning på mig var dom tvungna att nästan söva ner mig, jag drog ut alla sladdar jag hade på min kropp, inkl. kateterslangen. Jag var helt säker på att medicinen jag fick i droppet var gift, alla på intensiven var ute efter att döda mig trodde jag. Jag hade panik och försökte dra ut allt men då gav dom mig bara mer propofol (användas när man sövs). Så jag var jag var sövd under nästan 1 vecka när jag låg på intensiven i Lund. Nu är jag glad att dom gjorde det för nu märker jag att jag blir bara bättre och bättre och det är tack vara all behandling jag fick när jag låg nere i Lund, det jag var säker på var gift som dom skulle döda mig med. #autoimmune#encephalitis#neurologi#sjukhus#epilespi#kramper#portacath#rituximab#stesolid#propofol#narkos#eeg
GOLD COAST MASTERCLASS!!! 👩🍳 I'm so excited that I've been invited to host a ‘Going Gluten Free’ Masterclasses with @georgiabarnesau - and YES, this cake will be yours to taste! 🎉
👉If you are coeliac, gluten intolerant or cooking for someone who is, this class is for you! There will be cooking, eating, product swaps and tips and tricks 👉 SWIPE to see what we’ll be cooking 🎂🍕 There are three classes at @thekitchensrobina on Saturday, 14th September. Head to the link in bio for more details and to sign up. We can't wait to meet you!
🎟 Ticket link in bio 👆
‘Me Time’ 🌿☀️⛰💗 🇨🇭
Yesterday I hiked 22k through the Swiss Alps. Apart from my camera and the map on my phone, I dissociated from technology and others and had some ME time. I admired the stunning views, listened to the sounds of the country side -namely the Swiss Cows with the bells round their neck - and just contemplated.
I am back in Europe at the moment to see family and friends, celebrate birthdays, meet new arrivals, go opera festivals and more! It is AMAZING to see everyone and I am having so much fun exploring new places and just hanging out and reconnecting with people who mean a huge amount.
I have learnt from experience over the last few years that even though I’d love to fill my day to the brim, it’s important to leave some time spare and be with just me. To make sure I am appreciating how great it is to be home, what I want to be doing and more.
Through my initial journey with Ankylosing Spondylitis, I learnt to protect myself from the pain and stiffness, the frustration of having an autoimmune disease which stopped me living my life and more. I did this my disconnecting from myself feeling, pretending everything was ok. A self perpetuating spiral which rippled into all of life. Luckily - I people I have met on my journey have made me realise that this is not the way to be. .
It’s good to feel, and step by step I have learnt to reconnect with me. The happiness in my life and also the pain, sadness and all the other emotions that may arise. It’s still a learning curve and being a type A personality I really have to make an effort to stop and recognise what’s going on. Normally I journal, meditate or just sit and chill which I try and do every day. But I must say hiking is an amazing alternative and I will certainly getting out more to do this over the coming months. .
Here is to more exploring above the clouds ⛅️ 😊
T H A N K Y O U
N H S.................... Today I want to say how eternally grateful I am for our amazing NHS and all the incredible people that work within it. Tuesday was treatment day, it's once every 8 weeks and is a transfusion of a biological drug used to control inflammation in the body. I have 2 autoimmune conditions which have caused me a few battles over the years but battles I've been able to get through thanks to the NHS. There have been years of tests, treatments, referrals, consultants, specialists and drugs and through it all I've had the most amazing care. My consultant fought for me to get this current treatment, it's not cheap but it's so much better than any I've had before. From talking to people with the same condition on various forums around the world, I know just how lucky I am to receive it. In America, if you don't have the top rate of insurance you wouldn't have cover for this treatment, some people have to try and live without it (which is unthinkable) or are forced to sell their house to pay for it. So every time I sit in this unit I actually feel incredibly lucky and incredibly thankful that I do get to sit here and I do get the best possible care I could want. So THANK YOU to everyone that works so hard within the NHS and THANK YOU NHS for existing. I just hope our country takes such good care of you as you do of us!
Extensive research, experience and public knowledge exists to support the essential nature of good bacteria in our gut. Not just one bacteria, but a delicate balance of power play, a symphony of organisms that promote good health. They are recommended by Doctors, Naturopaths, Nutritionists, Nurses, Carers and Teachers. Probiotics, the good or commensal organisms in our gut have a symbiotic (mutually beneficial relationship) effect and disease causing microbes (pathogens) fight an ongoing battle within us, and up to 1000 different species have been identified.
It all goes back to a very clever man, Professor Alfred Nissan. In 1917 while the First World War was waging, poor health and dysentery ran through the assembled armies. One man however came to the medical attention of Professor Nissan, simply because he “in contrast to the large majority of his comrades, had suffered neither from dysentery nor from any other intestinal diseases”. This discovery led directly to the isolation of one particular strain of non-pathogenic bacteria Escherichia coli (note: there are many types of E.coli that DO cause disease, just not this one) which was studied in vitro and it’s therapeutic uses first discovered. It was named Ecoli Nissle 1917 (EcN)“Escherichia coli strain Nissle 1917” or EcN.
The patents after its discovery so many years ago as the prime species for gut health prevent it being readily sold by other companies all over the world. Since 1917 studies have been completed in vivo, in vitro and in human clinical trials to establish the depth of therapeutic benefits and their systemic effects. It is exclusively available in a refrigerated product called Mutaflor.
3 more days 😊
PATIENTS HELPING PATIENTS
Open to anyone, no military required 🤗.
DONATIONS ARE NEEDED OF ALL KINDS 🙏🙏🙏. Our Next 420 Support Group is on August 25th from 1-4pm Located at the @american.legion.397
In Monterey park 💖💖.
This will be open to anyone in need of a little extra help 👌. please remember that all donations are zero in, & zero out 😀,
& anything that you can help with is much appreciated 🙏. Besides our groups, we also do outreach, outpatient support at homes, or in hospitals, and also for the homeless and less fortunate in skid row and beyond 🤗. We usually bring about 15-20 people together in a semi circle and we let each person talk one at a time about anything on your mind, with no judgement of any kind. We also educate each other as we talk about our issues and help resolve them. ( #patientshelpingpatients)
Totally private unless you are ok with being public 👌. This is open to anyone with or without a illness.
My birthday giveaway consists of my favourite brands!💧Enter the competition today and you could win a 1l Kurobo bottle, 2 packets of coins (1 years worth of clean water) and a 100% plastic free bottle brush at the value of R735! 🌍Follow Kurobo charcoal and the brands tagged in this post! Tag 3 people in my birthday post and enter as many times as you want!
Não faça a besteira de pensar que não poderia ser pior. Já tive essa experiência e sinceramente, só não há jeito pra morte.
É horrível o que vivemos? Sim. Muitas vezes dá vontade de arrancar nosso corpo de nós? Com certeza. Alguns já chegaram a pensar que a morte seria melhor? Muitos, eu inclusive.
E, segundo o que eu creio a morte ou a Eternidade será perfeita. Mas normalmente quando esses pensamentos ruins vêm não são de uma morte natural. Não vou entrar muito no assunto, mas não, essa morte que muitas vezes já passou pela cabeça de alguns não é melhor.
Enquanto há vida, há esperança. Milagres acontecem, a ciência avança, reviravoltas incríveis nos fazem refletir sobre essa montanha russa chamada Vida e ainda vou além, vida com doenças autoimunes.
Aí que há loops, e quedas livres de tirar o fôlego.
Mas há a subida, acredite!
Então, de todo coração, comecei pensando em escrever algo e fui por outro caminho. Eu te entendo. Você se sente um peso? Sua vida já não tem mais cor? Você acredita que seus familiares e amigos ficariam melhor sem você? Você só quer que tudo pare?
Não é o caminho! Essas coisas acontecem pois a dor e a exaustão às vezes nos levam a um quadro depressivo. Não é real! Você acha que é, mas não é.
Se precisar estou aqui, aliás estamos.
Você não está só. Mais importante que qualquer palavra que eu possa te dar é você saber que há um Deus que te ama, te abraça, Ele vê sua dor, infelizmente há um propósito pra isso tudo e saiba que é baseado em Amor e não em punição.
Ele viu Seu Filho morrer com o pior sofrimento possível, por você, por mim. Pois o propósito era maior!
Confia no Teu Pai!
É uma fase, outras virão...
"Ah mas já faz tanto tempo que não acredito mais", pois acredite! Provações tem começo, meio e fim.
Seja forte! Acredite! 😍💪🏽
I lost a lot of weight last year, mainly muscle from being in the wheelchair. 15 kilos (33 pounds) in total.
I’m reaching a stage in my healing now where I finally feel that my muscles are working more optimally (I’ve still got work to do, but they respond to physical exercice better) and going up one stair case doesn’t send me straight into paralysis anymore and excruciating pain.
So I’m working on rebuilding strength daily. Doing long stretching sessions in the morning with breathing and working very slowly and carefully on building back my deep muscles. My upper body is regaining strength, and my legs can now carry me up from the floor easily. Sometimes I go overboard and it’s all about finding that fine line where im stimulating my muscles enough to make them grow, but not injuring them and giving my system too much of what it can handle.
That limit changes everyday and it’s by listening to it closely that I know I’ll make the most progress.
I love every bit of my body, even when I get weird looks for looking anorexic and having the legs of a 6 years old. My butt has been sitting on a chair for 4 years so it looks like the one of a 80 years old grandma, all flabby, pale and wrinkled. But I still love it. Because my body never gave up on me. And with 15 kilos less, or more, who cares, what matters is how aligned you feel and how much respect you have for yourself and your body. I feed myself the best nutrition on earth, the best air, the best light, and the best connection to the earth by being in nature all day. I surround myself with positive energies. Avoid toxic people.
The changes I’m seeing on my body and soul are just incredible. It’s a challenging journey, filled of surprises, fears but also wonders. I’ll never stop believing until I’m running than damn marathon. It’s all coming together ❤️
When you have a chronic condition, daily activities can be exhausting and chores around the house, near impossible 😓
Did you know I also offer a comprehensive in home service, assessing your home structure and providing an individualised plan of re-organisation and time / energy saving techniques to minimise energy and time usage around the house? 🏠
Follow the link in my bio to find out more! ⭐️
Today I got some not great news.
That after coming off steroids and all it takes to do so.
I need to go back on them;
I am also most likely having more surgery quicker than I expected.
Some people say they don’t know how I do it.
Some people say they couldn’t live a life so full of pain, surgery and disappointment.
And then I look at this picture.
Look at my two babes two of the seven reasons I won’t give up.
I celebrated Emmy turning three yesterday and my feet swelled up and I was nauseas but I wouldn’t let her know or see.
These Two are just two of the seven reasons ill keep fighting/ /
Is it fair..... maybe not.
Is my family worth fighting for.
I ain’t dead yet .
Can’t keep me down, won’t keep me down.
Bring on the next surgery; I got this.
Sorry I’m quiet guys the pain atm is overwhelming.....
Continuing to fight is becoming a tad overwhelming too.
I’m doing the best I can.
You have a superpower. You probably take it for granted right now, but it’s something you do better than most of the people on this planet.You push through pain that would break the average person.Living with multiple diagnosis, chronic fatigue, and/or unidentified illnesses means we keep on keeping on through levels of pain that would have most people hiding under the covers crying.And sometimes we do that too.I know you’re thinking this is the lamest superpower ever. But it’s not!With that extra strength and tolerance, you’re able to use the good days to take the steps from illness to wellness. To build the walls you need to keep the illness at bay. And create the systems that will kick in when you need them so that the next round of bad days aren’t so bad.To learn how to smile more, celebrate more, and feel better.And step by step, the illness gets smaller and your wellness gets bigger.
DO THIS EVERY MORNING! 🌞
warm water + organic lemon + straw = a bunch of great benefits!
I have added this to my Keto plan every morning on an empty stomach, which is key. The pH balance/Alkalinity and the Liver protection is my 2 main reasons for doing this on the daily. .
Any comments or questions 👇
Well, went to Urgent Care today to make sure I didn’t have the flu or something. I haven’t been feeling good for the past week. These episodes or flares come and go and I have no idea why. Right now, my entire body hurts. It’s like I can feel every rib and everything is throbbing. There’s pain radiating off and on in my arms, hands, wrists, legs, neck, shoulders. My jaw and neck lymph nodes hurt. Sometimes I’m not able to open stuff cuz my hands don’t work. This has been happening off and on for the past 3 months. And simple things like cleaning my bathroom, vacuuming, sweeping, light workouts are setting these flares off. It’s bizarre. I’ve had mild to moderate neck and shoulder pain and overall stiffness for a long time but it seems like now this has turn into something more. I don’t have the flu, a cold or other infection. I’m eating healthier than I ever have and my anxiety and depression are under control. I see my new primary doctor in a week. The urgent care doc asked me if anyone in my family has autoimmune issues because this is sounding a lot like that. And indeed I do. My momma has fibromyalgia. She was diagnosed at 38. I am 35. He also said that seeing a Rheumatologist would be a good idea but to start with my new doctor first and see what she says. I never told him anything about my family history or prompted him about any kind of autoimmune issue before he said that. I’ve been suspecting this might be the case but I guess I will have to take it one day at a time. I need to trust the process and realize I will not get answers overnight. It’s frustrating being in pain. The fatigue and brain fog is annoying. I just want to be able to do what I feel like doing! But my body is making that hard for me. I’m at a confusing part of my health journey. But I won’t stop searching for answers. I want to be healthy and feel better for myself and then for my kids and husband! So I will march forward through the pain, fatigue, frustration and confusion towards each new day with the mindset that I can do this no matter what. Whatever is going on will not define me but make me push that much harder to find answers and then help others on a similar journey.
Instantpot baked pineapple chicken thigh with broccoli.
Place your chicken thigh in your instantpot (you could bake it as well)
2 tbsp of bbq sauce and a few splashes of hot sauce for just a little kick.
Cover and cook for 30 mins. After the 30 minutes is up add the pineapple and broccoli and put them in for another 10 minutes (if fruit and veggies are frozen)
The hot sauce and pineapple make for a sweet and spicy dish.
I like to look back on these moments where I felt proud and strong 💪Today was not one of those days. Not more than an hour after talking to someone about my leg giving me issues a weekend prior, my leg started to give me issues again. Numbness, pins and needles, heaviness and pain. A cane may be in my near future. BUT, I am grateful for the good days like the one in the picture where I can ride my bike like a crazy 10 year old with pure joy on my face! MS may put limits on me, but it will never stop me from trying💪 Stay strong my friends! @mssociety@verywell@healthline#sleepinggiantprovincialpark#canada#msstrong#outdoorwomen#fitness#choosehappiness
Being diagnosed with a chronic condition leaves you with a range of emotions.
In most cases, chronic illnesses (specifically speaking about Lupus because that's what I have experience with lol!) are very difficult to diagnose because they mimic so many other diseases.
So when a diagnosis is finally found we usually feel relieved... At first.
And then the reality of it never going away sinks in and that's when it gets tough to keep on being positive.
Obviously we're justified for feeling down about all the negative ways that chronic conditions influence our lives.
And at the same time, there is still a life to live.