I always have faith that I will get better! I never could have imagined my whole world would change in this way! Multiple Chemical Sensitivity has devastated the lives of millions of people worldwide. It has impact and effected EVERY single area of my life. My health, my career, my family, my friends, my human rights, my opportunities. I fight every single day...every single minute! I don’t need sympathy, I want my life back in any small or big way possible! Fragrance Free policies worldwide need to be created for employees and visitors! No signature scents in stores, No Air Fresheners, No fragrant products in public spaces. Indoor air quality has become an important health and safety concern. So much work is required. Can you help? Everyone can make a difference. Every letter, phone call, any effort to bring awareness matters. Your help will help others who have tried to plant seeds before, together we will make changes for us and for future generations! #campaign #chemicalsensitivity #multiplechemicalsensitivity #mcs #worldwide #speakup #youmatter #humanrights #activist #pleasehelp #invisibledisability #myrights #workplace #indoorair #ohs #doctors #medical #hospital #beaware #youdontlooksick #chronicillness #believeinyourself #youcan #standup #wordoftheday #fragrancefree #womenempowerment
It's been kind of a rough day for the fuzzy sausage and I. I have been struggling terribly with sleep for the last two months and today my body finally crashed from that and everything else. I feel so incredibly exhausted and I'm having difficulty just moving around and staying awake. I am a bit nervous about surviving at work but I am hoping to be able to sit a good deal. Though I told them from the start I am disabled I still feel guilty and like I am being judged when I ask for even the slightest change to accommodate my health. However, I am still as active as my body allows and I work as hard as I can. I stay engaged and I always look for a way to help others while caring for my own needs. So I really hope that counts for a lot.
In other news, Sparky is struggling because his momma left for two whole days, and also I won't give him any of my lunch. Poor guy.
#chronicillnesswarrior #disability #youdontlooksick #fibro #potsyndrome #chronicpain #sleepy
Chronic illness & doctor appointments go hand in hand. But for me, having to go the doctor rattles my core.
Woke up early this morning, feeling sick. Scratchy throat, coughing and a stuffy head. But got dressed and drank my pre-workout like always for leg day.
I remembered I had an appointment this morning during my workout. And in this moment, it hit me.
This one was going to tell me how I'm progressing and what else is happening. Which I always dread hearing!!
But instead of letting it take me down, I decided to get the workout done. Leave it all there on the floor and crush it. The outcome of what's happening to my illness will always be the same.
So in that moment I choose to let if affect me or push me. I choose the latter. No matter what happens....I'll be fine! I'll get through it as I always do. FIGHTING!!!
I’m gonna get some real talk up in here. I’ve met and followed so many amazing Lupus and Chronic Illness Warriors here on IG and I love seeing everyone’s journeys. A constant theme I see amongst people I follow is how happy they are to have their partner/spouse in their life for support. But how many of us out there don’t have that? 🤷🏼♀️
I’m as single as they come and I can’t say that I love it. Dating is hard enough when you’re a 32 year old girl but it’s even harder when you carry multiple chronic illnesses with you. Dating can be tiring and stressful and what does fatigue and stress cause? Flares. 🤦🏼♀️
I have an amazing group of family and friends that are constantly there for me so I’m not complaining about being alone - in the slightest. But sometimes I wonder what’s wrong with me and why I’m still single. 🤷🏼♀️ I’m not meaning to whine to everyone - I just needed to vent. Also maybe my vent would help reach someone who feels the same sadness and loneliness that I feel. I am here to be completely open after all. 💁🏼♀️
I’ll just smiling I guess. Thanks for listening. 💜
Never give up....always keep striving to be better than yesterday 😊💕✌
The ocean is everything I want to be - beautiful, mysterious, wild, and free. 🌊💜
Today as I stood looking at the beauty in & out of the Getty Center, I was beyond grateful for the opportunity to experience it standing on my own two feet 👣.
3 years ago, this wouldn't have been possible after losing my ability to walk due to my illness.
What most people take for granted...is my blessing that I had to fight to get back every day.
I'm proud of myself for fighting to not allow my illness to take me down. For fighting the pain, the fatigue, and the depression & anxiety. For taking a chance on me when people laughed, saying I couldn't do it. And for all the sweat and tears to get to this moment.
They say...building up a weakness just makes you less disabled. Building strength can take you to the top of the world 🌎.
The past 3 years, I've been doing just that and today I feel as if I'm on top of the world 💕.
Took a field trip today to the Getty Center 🖼🎨
The grounds, the sculptures, architecture, and views are stunning!
I'm having a hard time deciding if I like the outside or the art inside more. The Van Gogh's, Monet's, Degas' in person are breathtaking to see and imagining them as it was crafted by their hands 👨🎨
Little unknown fact....I fell in love with art as a young child, going to museums. The first piece of art I fell in love was Edgar Degas, The Little Fourteen Year Old Dancer as it stood on a pedestal in a white room all by itself on display. I remember it like is was yesterday.
Art has always been a passion of mine. I could've spent all day here and surprising with hours spent, still didn't see everything. That's okay....another trip is in order 🚗
Do you have a passion for something? What?
Since the Walk to End Lupus Now in LA is almost here.... Had to do a #tbt
to STANDING EIGHT... The award winning short film I wrote about a #boxer
who is forced to retire after being diagnosed with #lupus
This joint is one for my all my #lupies
You can even see that 🦋 on my face
Check out the trailer in my IGTV
I'm thankful for opening my eyes this morning, being able to walk and not be in pain.
What are you thankful for?
“Work on being in love with the person in the mirror who has been through so much but is still standing.” 💕
Recently I was thinking about the last 5 years of my life. I spent so much of that time truly hating myself. I was miserable with my weight. I was miserable with my looks. I was miserable with my dating life. I was miserable with my job. On top of all this misery I was introduced to my good friend Lupus. 😣
I was miserable and scared and lonely and lost. I would be lying if I said I’d never considered what this world would be like if I wasn’t in it. I spent a few years dragging myself through my lowest point. I wondered why others didn’t want to be around me. As I said, I hated myself. 😬
Sometime around this past December - not sure exactly when - I woke up and realized how detrimental this was to my overall health. I started my path towards healing. My first step was to stop letting little things I can’t help get to me. After that I started working out again and eating better. Once I had accomplished those, I set out to make plans for this year that would truly make my heart happy. Fun trips and my amazing move have made me feel so full of life. I look in the mirror now and I see a girl who has fought a battle and is still standing. The battle will continue but I’ve armed myself with the tools necessary to fight back. When I look in the mirror I see a person that I love and I’m excited to see where her journey will take her in the future.💁🏼♀️
This picture says it all for me. I was going out in LA which can be an intimidating and superficial city. I threw on a $20 Kohl’s dress and some Target boots and I kept my head up all night. Not once did I care if people were saying anything and I had so much fun. Don’t ever let yourself be your own worst enemy. Love yourself first. 💜
Entyvio day is my colitis reminder. Once a month I come to the day hospital to receive treatment. I have a history of ignoring my health when in remission and feeling good, but that always puts me back in a bad place. It has been a challenge between finding the balance of accepting my disease without being depressed about it. I do have to work a little bit harder than most to be healthy, so it is good to have these small reminders to keep me on track.
Nights before infusing. I’m just like my lola
I am 28 years old and today I got my very first flu shot. I never got them before NOT because I believed in anti-vaccination stuff, but rather because for people with my specific diseases, doctors are pretty much split 50/50 as to whether it is a good idea for people like me to get this particular vaccine. I admit I was and still am a little scared of how my body might react, but after talking with my pharmacist who was very patient, I decided myself that it was worth the risk, especially with how poor my current health Is. Earlier this year I got a bad virus and had a 103 fever. I was in terrible pain and at night despite trying to control it with meds I ended up passing out, which is common for POTS patients. Somehow I fell into the narrow space BETWEEN our two dressers. It could have easily turned out different. I could have smashed my head right on the furniture and would have gotten a gash in my head or worse. The shot doesn't guarantee that I won't get the flu, but I hope it gives my body the very best chance at fighting. And, since I am disabled, I need all the help I can get. I think people with health issues should dig deep into research to see the pros and cons of getting the flu shot; no one knows our bodies better than us! But of course, if you can get it then do, because you aren't only protecting yourself, but everyone around you. 😊 #disability #spoonie #chronicillnesswarrior #youdontlooksick #potsyndrome #fibromyalgia #celiac
I love capturing sunsets because they always remind me that tomorrow is another day and another chance to work towards your goals and dreams. 🌅☀️💜
After a terrible morning....I needed to unplug and get away.
What better place to escape than my happy place...Disneyland.
Got the Mickey ears on, a jungle julep in hand and forgetting all the worries for now.
Just time to enjoy myself 💕
So this week I appear to be making many a stupid mistake. Brain fog, fatigue tired is kicking my ass. Here are a few examples:
1) buying gorgeous sprinkle photo albums for the baby shower pics to discover they only fit instax photos AND it said that in BIG letters on the front which I clearly didn’t read.
2) Buying this diary for my mum to hide away until Christmas, only to get home and realise it’s a 2018/2019 diary which is no good. Again, it quite clearly says this on the diary!
3) forgetting to put sugar in a cake mix and only realising this when I took it out from the oven and it didn’t look right.
Is this week done yet? Because I am!
#brainfog #mecfs #myalgicencephalomyelitis #myalgicE #spoonie #spoonielife #spoonieproblems #youdontlooksick #hiddenillness #invisibleillness
September 19th is the date that we have repeated over the last six years. Writing the date on so many new patient doctor forms for all specialties, having consultations after consultation and repeating September 19th to the doctor over and over. Sitting next to people in ER waiting rooms to pass the time while waiting for hours to get called back. So many ER visits sharing the date with the triage nurse, technicians, nurses and repeating for the ER doctor. Thirty plus hospital admissions sharing her story with the day nurses, night nurses, interns, residents and Attending doctors. Surgeons, anesthesiologists, psychiatrist, therapist....We could go on and on and on about how many times September 19th 2012 has started Aliyah's story. This is not only Aliyah's story but our families story. September 19th, 2012 will always start the story. #ndph #pseudotumorcerebri #iih
# chronicdailymigraine #newdailypersistentheadache #keepswimming #nevergiveup #youdontlooksick
In honor of #ChronicPainAwarenessMonth
, I’ve decided to be a little vulnerable and share a portion of my story.
When I was in undergrad at #AuburnUniverisity
I was diagnosed with a chronic pain illness named Fibromyalgia. Over the years my feeling towards this have been all over the place. I remember being embarrassed and frustrated with people’s inability to be empathetic. I saw people’s frustration when they would ask me why could help and I had no answer. Now, I’m more grateful for what fibromyalgia has shown me about myself and those that I am connected to.
I HAVE to be extremely intentional about where I go, what I wear when I go, how long I’ll be there. and even where I sit when I get there. You’ll often see me with a bag of some sort with a bunch of “pain essentials” so that I can be prepared for best and worst case scenarios.🤷🏽♀️ To everyone who has supported me through an episode, taken me to the hospital, driven me to meet my mom, taken me home, held my hand while I cried, made me laugh, purchased/picked up my medicine (pills, creams, patches), let me borrow their heating pad, prayed for me and even genuinely asked me how I am feeling, I appreciate you and I remember those moments.
If you know someone who suffers from #ChronicPain
, THINK before you make a comment about their condition. We’re in enough physical pain, please don’t add to it by being insensitive by saying “it can’t hurt that bad” OR “you’re too young to know about back pain” .... Feel free to ask me questions!! #ChronicPainAwareness
“We are not given a good or bad life. We are given a life. It’s up to us to make it good or bad.” 💁🏼♀️
I just got back from a trip I’ve dreamed of for years. I had so much fun. But what am I doing today? I’m working from home in my bed because my body can barely move and I have a fever. 🤦🏼♀️
It would be easy for me to sit here and wallow about my illnesses and how I’m stuck sick today after such an amazing trip but instead I want to focus on the amazing trip! ⭐️
My flares will always pop up and more than likely I’ll be sick for the rest of my life but I refuse to let that stop me from living my life. Life experiences are wonderful - even more so to a chronic illness patient! Today I challenge you to try and see the good side in something - even just one little thing. Because despite the crappy hand you may have been dealt in life, you still have a life. Take an little opportunity you can to live. 💜
Got your attention, didn't I?! You're probably thinking WHAT?!
They say that beautiful is what a girl needs to be. But forget that...don't be beautiful!!
Be angry, intelligent, witty, klutzy, interesting, funny, adventurous, crazy, talented and an infinite number of other things!
What is being beautiful anyway....but just a bunch of letters that make a word.
Be your own definition of amazing!
That is so much more important than being beautiful...EVER 💕
Mexico 😘 absolutely beautiful how they honour and appreciate their passed. We should do the same because it lives on and some of these tombstones were very old.. 🤗
I’ve spent my entire life dreaming of the day when I could go to California. I feel so blessed that I was finally healthy and stable enough to make this trip and enjoy it with such amazing women. A dream come true that I’ll remember forever. ⭐️
I seriously couldn't wait to share this one today 😊
There is 3 years between these pics and a lot of changes....
❤ Self confidence
❤ A smile
❤ Weight loss & inches too
❤ Smaller clothes ❤ Less health issues
❤ Stepped out of the shadow
❤ Chronic illness survivor.
This journey has been long with lots of up & downs, successes & failures BUT I wouldn't change a thing about it.
Along the way, it's given me a life lesson in who really Danielle is and is capable of being.
She's a fighter, a warrior, strong, resilient, and regardless of illness never allows excuses to give up on life.
I never was this way 3 years ago! I just went through the motions every day and was absolutely miserable!! It sucked and life was depressing.
Who knew that getting sick with a chronic illness would change that all for me and have me fight harder than before! So when people tell me they're sorry I'm sick, I don't see it that way. I'm blessed because it gave me so much in return.
Every day I work a little harder to be better. To try new things and be the best version of me 😊💕
If I can do this....you can! What a stopping you?
Two months ✌ ago today was my last infusion therapy session 💉. And at the time I thought it was the worst decision I ever made!
Living with a chronic illness already, the risk for the side effects to be greater was a possibility. Well..just my luck, they were.
After my treatments, I would come home and pass out for hours because I couldn't take the nausea, pain and the fatigue was out of this world.
Pain so intense, I would rather die. And in the middle of the night, I would wake up in a quiet house, cry and have thoughts of taking myself out of the pain.
Would get a day off and then right back. I would cry the night before knowing I had to go in. I didn't want to feel the pain 😭.
After it was finally over and a week had passed, I realized that although it was the worst experience, it was the best decision I made.
I had no chronic pain, sleeping through the night, had amazing energy, and no fibro flare ups. Two months later, still NOTHING!! I finally feel alive again 💃.
Although I feel amazing, next Monday I will find out if it was successful 🙏💕
Drinking a beer at 7AM to toast all the amazing West Coast memories. It is 5 o’clock somewhere after all!✌🏻our California! I will most definitely be back one day. ✈️☀️
This is the second time this has happened to me in less than three weeks. I am especially shaky in the morning I guess. Thankfully it's only Zyrtec and not one of my important meds, but that shit is still expensive! What a good way to start a Tuesday. Maybe I should just go crazy and put a pop Socket on everything I own! 🙃😬 #meds #shakyhands #youdontlooksick #chronicillnesswarrior #potsyndrome #frustrated
In case you forgot 😊💕✌
Tag someone who needs the reminder today!