💍Nous voilà à deux mois du mariage. J'ai ma magnifique robe de chez @maisoncreanne 👰
Puis aujourd'hui j'ai passé une magnifique journée en compagnie de mon amie Chloé qui m'avait tellement manqué. Essai maquillages, essai des accessoires avec la robe etc. Mon futur époux a aussi repassé son magnifique costume @boss. 🤵 Pour mon plus grand plaisir. Et oui nous les coutumes on s'en fou un peu 😂
Le grand jour approche de plus en plus, on a hâte mais du stress aussi il faut l'avouer.
Voilà pour les nouvelles mes 🦐 on vous embrasse 😚
8 weeks between the first and last picture. I’m not gonna lie I haven’t been super dedicated to my diet. I’ve never eaten terrible but I did add more cardio to my routine and it’s paying off! 🙌🏼 I’m going to get back to posting my workouts soon!
Today was my first iron infusion. I’ll do round two in a week. I’m hopeful getting my ferritin up where it should be reduces some Big symptoms. Time will tell but I’m glad to be making some small progress on my health journey. Ehlers Danlos blesses you with juggling a long list of symptoms and the need to see a lot of different doctors. It can feel never ending and gets overwhelming! I’m trying to focus on one step at a time while balancing family and business. And today that means going home to rest while my body works hard. #ehlersdanlos#chronicillness#health#edswarrior#zebra#eatingdisorder#edrecovery#hypermobility#endometriosis
@keithurban & @kelseaballerini are playing tonight at Harvey’s in South Lake Tahoe! Vendors are setup outside the amphitheater 🐾🐾 Stop by and grab some FurTastic 🍺 grain 🐶 treats for your pups! #hardrocktahoe#dogfriendly#beergraindogtreats
Lately, I’ve been dealing with some new things that I’ve never had to deal with before. Adjusting is very hard, especially when you’re adjusting to more pain or a lower functioning level.
For the moment, I’ve been dealing with my left leg (which was the good one) suddenly becoming just as bad as my left. My knee subluxes too much so it makes my walking slower and my legs are now in immense pain almost 24/7. But they will suddenly stop hurting, and then all of the sudden it’ll hit me again. It’s frustrating because one leg like that was bad enough... now I’ve got two? Smh. My right hand is still deteriorating to the point where just typing on my phone is painful >.> idk what to do about it. Oh well. I’m trying my best!
I had another depression weird episode last night but I expressed my feelings to my mom about how I’ve been declining and how I feel angry and sad about it. Technically, I would have received my ASL certificate from College and would have been Interpreting by now. But, now I’m just stuck in a wheelchair when I go out of the house, and I’ve lost my functions to even handwrite really. I’ve had to give up thing after thing after thing and it’s painful and saddening.
BUT! There are things to help! I have braces that are being made, I will go to a neurologist to check I’m okay, I will be going to a neck person too because I know my neck is unstable but I haven’t gotten around to dealing with it. Also, I saw someone getting a custom compression suit 😱 Which would be epic for my sensory problems as well as pots so I’m going to look into that. I also have to call the eye doctor, pick a new pcp and get my wheelchair eval process started. I’m excited to get a better wheelchair (one that fits me like a glove) and a smartdrive so I won’t be damaging my shoulders anymore.
I keep reminding myself that I won’t be magically fixed overnight, but I am here for those like me. I want to write a book from a chronically ill person’s perspective to help normal people understand. So they can read my struggles and come to understand that we need more care, more love, but we are tender hearted and just people under all the medical equipment.
Let me know!!
It’s officially been four days that I’ve been suffering with this horrific GP flare, unable to keep anything down ☹️.
I was meant to be going to a friends dinner party this evening, catching up with lots of friends I haven’t seen in a while. It’s so frustrating having to cancel but I know I’m listening to my body, and let’s face it, I can’t really fight through the sickness at a party anyway! 🤷🏻♀️
You may have seen I went out for dinner last night which didn’t last long at all, I wasn’t doing too badly and suddenly took a horrible turn and had to be carried home... I took a doggy bag of my food and attempted to have it for lunch, but it didn’t stay down 😪.
Just to add more salt to my wounds.. I’ve also been suffering with one of the worst migraines in quite some time, and had to take my sumatriptan injection, which I really try to avoid as the side effects aren’t pleasant!.
So, I shall continue napping (dreaming of sushi) and sipping on my hot water with ginger and lemon and watch some trash tv on the sofa 🛋 📺
Recently I purchased Vital Protein Collagens to help with my collagen disorder. I know homemade bone broth is the best but until I have the time to make it, this will have to do. .
What does my collagen disorder mean? .
🔹I am hyper flexible without even trying. .
🔹My finger joints hyperextend. .
🔹I have scoliosis and disc degeneration. ..
🔹My joints can subluxate and then slip back into place. ..
🔹My skin is velvety soft and thin .
🔹I hardly have any wrinkles on my face (bonus!) but I also have cellulite on my arms and legs. .
🔹I form cigarette-paper keloid scars
🔹My veins are becoming varicose
🔹I exhibit leaky gut and leaky vein symptoms .
🔹Due to leaky veins, my leg and arm tissue has become inflamed and are beginning to form scars in my fat and possibly muscle tissue. .
I’m hoping to stop and possibly reverse the damage from having this issue. 🤞🏼
Pendant environ 4 ans, à cause de ma gastroparésie, j’ai dû éviter de manger des fruits et des légumes, des légumineuses, du steak, des noix... comme c’était pas une allergie, je trichais quelques fois par année (Noël, ma fête...). Je devais aussi me limiter à des petites portions (1 tasse en moyenne). Ironiquement, je n’ai pas perdu 1lbs, même quand j’ai eu des crises sévères et dû passer au régime liquide pendant plusieurs semaines!
Il y a quelques mois, j’ai eu de nouveaux examens (vidange gastrique, gastroscopie) et mon gastroentérologue m’a dit que je pouvais essayer de manger normalement à nouveau, que ma nouvelle médication semblait fonctionner... pour le moment. Nous sommes conscients que c’est évolutif et que ça risque de ne pas durer, mais je vais en profiter!
Et quel plaisir : ça se passe bien!
Deux belles surprises : 1) j’ai perdu près de 10lbs depuis le printemps (mais ça ne paraît pas) 🤷♀️ Quel corps confus qui perds du poids quand on mange plus?! Non mais... 2) Je me sens beaucoup plus forte! J’ai encore mes symptômes du POTS bien sûr (ils étaient apparus bien avant la gastroparésie), j’ai des douleurs atroces (c’est pire depuis la dernière année), mais je me sens bien, j’ai l’énergie pour faire quelques activités, je me sens motivée! J’espère que les médicaments vont contrôler mes symptômes longtemps! #ehlersdanlos#gastroparesis#fruitsandveggies#energy#crazybody#plaisirdemanger
From scared of surgery in pre-op and able to move my neck way more than any normal human...to attempting to go home today despite awful occipital neuralgia still blinding me. I’m fused! But I walked again with the sweet PT ladies and every staff member here is amazing! I can drink easier...didn’t feel the need to choke. I can’t wait to feel better and better and attempt art again! Balloons (thanks @e_belanger2 @e_belanger1 for everything!) And sweet visits (@theistammy) and gifts...I love you all so much. Lots of pain shooting on my right side of head but hanging in there. - -
My trip to Melbourne was exhausting but unbelievably worth it! -
This year was the first time I skippered at nationals and I had the best time. I am not sure if I will continue to sail after I finish high school with my EDS becoming more difficult to manage during physical activity but I try and enjoy every moment I can. I really love it and I am so thankful to my school, family and team for making my final nationals so special. As Mary Frey always says “do what you think you can’t do” ☺️
My first big set of exams are coming up this week and I am unbelievably nervous but also confident in my abilities so that’s good 👍 hope everyone is doing ok xx
Chronic fatigue syndrome is a complicated disorder characterized by extreme fatigue that can't be explained by any underlying medical condition. The fatigue may worsen with physical or mental activity, but doesn't improve with rest.
This condition is also known as systemic exertion intolerance disease or myalgic encephalomyelitis. Sometimes it's abbreviated as ME/CFS.
People who have chronic fatigue syndrome appear to be hypersensitive to even normal amounts of exercise and activity.
Why this occurs in some people and not others is still unknown. Some people may be born with a predisposition for the disorder, which is then triggered by a combination of factors.
For me the term "fatigue" doesn’t represent the situation well. We are not tired like normal people returning from a day's work for example. We are exhausted, sometimes unable to get up or talk. I think that is why many people do not understand when they are told chronic fatigue because they too are maybe tired.
Since childhood I have always been easily tired. I could not play sports at school because then I could not follow the classes of the day. Everyone thought I was lazy so I thought it was that. And then I started working and there I was totally exhausted. I did a very physical job that was horrible in terms of fatigue but also pain.
Since I have oxygen I feel a little less tired but there are always days when I can not get up, I can not do anything so much fatigue trumps me. I do a lot of research on chronic fatigue but there is not really any cure for that.
Do you have something that improves your chronic fatigue? #syndromedehlersdanlos#fatigue#chroniclife#chronicfatigue#chronicallyill#chronicwarrior#invisiblepain#invisibleillness#autoimmunedisease#ehlersdanlos#eds#ehlersdanlossyndrome#spoonie#spoonielife#spooniestrong#zebra#zebrawarrior#spooniewarrior#fatiguechronique#chronicfatiguesyndrome#chronicpain
One of the main types of #hypermobile#EhlersDanlos pain is a feeling of heaviness that brings intense, deep, burning, stabbing pain to the effected area. My neck has been in a bad way since Monday night. Tonight, I can feel it in my right shoulder, right ear, my neck/shoulder intersection, my right scalp, my right temple, myth right cheek and the length of the big tendon that runs up my neck on the right side in the back.
It's maddening. From what I understand, some of this (maybe all of it) is myofascial. I have also learned tonight that this intense pain is remarkably common in #EDS patients. This makes the second time in recent memory that this hasn't gone away in a day or two with rest, cold/heat, muscle relaxers and anti-inflammatories. So, tonight, we went to the late night #Walgreens and picked this gem up. Almost immediately, a sense of some relief!
The pain is still there but it doesn't feel like my head weighs 300 pounds and is going to crush my neck and fall into my body cavity. I actually feel genuinely relaxed (as much as I can be) for the first time this week.
Thank you, #zebras , for suggesting this #cervicalcollar to me. Your stripes are showing and they are beautiful.
Blood & urine tests for today were apparently marked urgent so should be in soon! 😊 I do have petrichae from the band, though 🤷🏼♀️ I’m more than ready for these results!🦋
I do think illness has made me kinder and more empathetic. It’s helped me to see plights I might never have otherwise understood, and to consider what’s really important! 🥄🦓🦋
#nofilter The #surfacepro will legit change my school game so hard. I am SO GLAD that I didnt go with the iPad or Galaxy Tab. The iPad seems to be geared towards artists and the Galaxy tab is geared towards the general public, I think. The SurfacePro was fucking MADE for us medical students and science majors! The amount of things you can do with this baby is incredible! The OneNote along is a game changer for school. You can record audio, take notes, draw. . .switching between pens and sizes and colours is so simple and fast and the highlighters are GREAT and work better than real highlighters and the pen is pressure sensitive and it's so smooth to write with. No more stopping to put down a pen while colour coding and highlight notes. No more taking extra time to go over your words a million times to make them bigger. The onenote app makes it that much easier and saves you time so you can do it while your professors talks. Then there's freehand drawing as well as drawing that can be fit to perfection from your freehand (ie; draw a circle freehand and it will correct it to a perfect circle for you) and it has built in graphs and table and diagrams that you can size and position to your liking on the page and write/draw in/around/on/etc at your leisure. You can do all this right next to your recorded audio while it is recording. And the organization factors of this tablet is incredible! There are main folders and then folders inside of the folders and they are right on the side and they are colour coded and named to your liking so they're easy to be sorted through. As someone who is #premed and has #osteoarthritis and cannot carry heavy things around campus all day, this is very literally a game changer for me. I can leave all my books and notebooks at home and get the ebooks pulled up here and use the dual view to take notes while my book is on the other side of the page. You can turn off having it register any touch sensation while you're writing with the pen, too, so no worries about you laying your hand on the screen while you write like you would on a notepad. And no more obnoxiously time consuming flipping of pages because all you need to do is scroll down!
“Once you’ve accepted your flaws no one can use them against you” I thought of this quote because the last few days have been rough and I'm still in a lot of pain. (seriously, this is my I'm fucking over it face) I used to think I just needed to accept my flaws. They had been used against me a lot and my self image suffered greatly because of it. I had a lot of flaws, according to other people and struggled to accept them. I thought there was something inherently wrong with me. The truth is, there isn’t. Do I have some issues? Hell yeah. Am I sick? Yup. Do I make mistakes? Absolutely.
Why do we look at things as flaws? They are part of us, they make us who we are, how we see the world, how we interact with people. That being said, we should take time to reflect, to see where we can be better humans, and do what we can do make that happen. To suggest someone is flawed is telling them they cannot be "fixed". I'm not talking about abusive or hurtful behaviors or things we know are not okay to do. There are things however that we cannot change about ourselves and those are often looked at as flaws. Flawed suggest you are broken, not enough, not worthy of love….. I was there, I still struggle accepting myself sometimes.
My challenge is to look at those things and see how they have helped me. Being sick has given me more compassion and understanding. It’s teaching me self-care and balance. It taught me there are people who are okay with me being sick, they accept it and see beyond it. My marriage taught me to look at people as they are not who they say they want to or will be. I've learned to stand up for myself and have boundaries. My mistakes each teach me a different lesson if I allow them to. These are not flaws, they are a part of me and my life. Even while I am still sorting things out I am worthy of love, I am a decent human being who tries to be kind, I am not less than because I am sick. I am not flawed. I may be weird and a little bit crazy but that just adds to my charm and I accept that ;) #chronicillness#chronicpain#ehlersdanlos#eds#loveyourself
In the last few days we’ve had excessive heat warnings, and it’s going to continue into next week. The “real feel” today reached 111•F (43•C), plus humidity. 🌡🔥 For those of us that have been hit really hard by the soaring temps, here are just a few things to keep in mind: • People with chronic illness are at a higher risk for heat related issues • Medications can affect how your body responds to heat and how it regulates your body temperature • There *are* things you can do to help keep yourself cool, and lower your risk of heat stroke and heat exhaustion. • Be sure to play close attention to how your body reacts to the heat, and your ability to sweat. Antidepressants, antihistamines, and beta blockers are some of the meds that can hinder your response to heat. Ive found that summer in particular is the worst “season” for my inflammation. I can also expect dizziness, nausea, zero energy & appetite, inability to regulate my body temp, and a good ol fashioned heat headache. ☀️ But I am vigilant in how much liquid I’m taking in. I drink a ton of electrolyte water and coconut water to stay hydrated. I LOVE popsicles, and I have my #Ensure drinks to make sure I get some #vitamins and #protein , and I am a big fan of using cold compresses on my pulse points: neck, temples, throat, wrists, elbows and behind my knees. Limiting outdoor activities to only what’s necessary can play a large role in staying comfortable during the heat wave. Be smart, pay attention, take care of your pets, and stay cool! ❄️⛄️ What sort of things do you do to help survive the summer temps?? ⛄️❄️ #summer#heatwave#louisianasummer#protectyourself#selfcare#chronicillness#medical#medication#spoonie#excessiveheatwarning#staycool#beattheheat#crohns#autoimmune#MALS#EDS#ehlersdanlos#educate#advocate#support#awareness
i got ginger 2 bandanas and they’re reversible!! i love the way they look on her
swipe to see a cute little video of her doing her “dance” trick!! (i did this to make sure she was comfortable in a bandana, as i can’t remember the last time she had one on)
After some four to five years I'm having my first eczema flare up. It makes sense, since stress has a huge impact on every aspect of my health.
It seems like such a tiny thing- such a normal problem- but for me it's maddening. My skin is already incredibly fragile due to my EDS, so having the angry patch of dry and cracking skin right between my fingers makes doing nearly anything painful.
I almost wish it was hives. At least those go away fairly quickly.
Nearly three weeks into this flare up. Longest I've ever had. Let's see how long it stays.
I just realized I have not really introduced my cat to y’all! This is Percy AKA Perseus AKA Pers AKA “God Dammit Cat!” and she is my little baby. I got her after my therapist decided it would be good for me to have a pet to help with my severe anxiety, depression, and panic disorder. My aunt’s cat, Lola, wound up having kittens right after my dad agreed to getting a cat. Percy was the ONLY kitten of the four kitten litter to be colored like she is with the tabby and white markings. The rest of her family were black and white with the most amazing long fur. I picked Percy after a friend pointed out her cinnamon roll markings in the first picture I got of the kittens the day they were born. I didn’t officially pick her out until a month later and we all thought she was a boy (hence the name Perseus). But when I got her on June 11th two years ago, we found out that she’s a she. She had already gotten used to the name and it fit her so I kept it. She is now a spoiled princess and an excellent ESA!