This is helpful, and important!
My PT has been helping me kick ass with slowly building up to exercise, and stretches. I think today, I over did it. I was sweating quite a bit, even during light stretches, and my vision was flashing in and out, with light orbs. (🙄🙄🙄) Symptoms started getting bad on Tuesday, and have been getting steadily worse, and tonight, it’s all about the bathroom. Migraines, throwing up, #2
, insane vertigo and dizziness, pounding heart, air hunger, throat closing up, tanked blood pressure, have to pee a ton, Norepinephrine is up to no good 😡😡😡😡 I freaking H A T E Norepinephrine dumps!!!!! Leaves me trembling for hours, and it makes me really confused, and I can’t tell what my blood sugar is, when I’m brain fogged out/disassociated/not getting enough blood/oxygen to my brain, I can’t tell what my blood sugars are, and upside down, is right side up, and backwards is forwards. I end up going through a good 20-30 test strips during a severe night like this. One instant I will feel very acidic, like my blood sugar is over 600, and the next moment, I am drenched in sweat, thinking I’m under 40. Next moment I’m freezing. I need the A/C on one moment, and the heater on, the next. Chest hurts like a b, and I’m so over it 😩😩😩😩😩😩😩😩 #Repost @slippinonspoons
Repost @potsiespoons #invisibleillness #invisibleillnesswarrior #invisibleillnessawareness #dysautonomia #posturalorthostatictachycardiasyndrome #potsie #chronicpain #chronicillness #chronicpainwarrior #spoonie #spooniestrong
I’ve finally morphed into my true, full-fledged, EDS self. This is me now. *solemn face* Jk jk just found this little fella meandering across my porch the other day and had to observe him for a while. I think we bonded. It was nice.💚🐌
3weeks ago I was diagnosed with Ehlers Danlos Syndrome. I still have to get an echocardiogram and wear a heart monitor for 24hrs as the geneticist suspects I may also have Postural Orthostatic Tachycardia Syndrome, and I have to see a rheumatologist to rule out Fibromyalgia.
Basically it feels like my body is trying to kill me. I can't do even half of what most people my age can do and that sucks. It hurts to sit down, it hurts to lay down, it hurts to pretty much do anything. And not "hurt" like I scraped my knee or stubbed my toe, but "hurt" like someone's taken a baseball bat to my body and even like bones are breaking.
Every. Single. Day.
But I'm good at hiding it. When we had people over the other day they didn't see the agony their volume caused (not their fault, I'm just incredibly sensitive to sound), they didn't see the agony doing the laundry caused, or how just walking and standing was exhausting me. They didn't see how I almost passed out from pain and exhaustion, and I'd barely done anything that day.
I have an invisible illness that has made it impossible for me to do a lot of what others my age can do. And that doesn't make me less of a person, despite what a lot of people think and say.
#ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #firbromyalgia #invisibleillness #invisibledisability #spoonie #spoonielife #imnotlikeyou #exhausteddoesntcoverit #chronicpain #everythinghurts
Right now, he interrupts my scratching with paws up on my leg. But I’m working on adding/changing it to the persistent nudge. He does it naturally sometimes, so I’m just pushing for more strength and insistence.
THIS COULD SAVE YOUR LIFE.
Medical ID bracelets are extremely important in making sure that you are well taken care of in an emergency, but do you know what to put on yours?
For a rare disease patient, the best option is to list what could happen in an emergency, not the name of your unfamiliar illnesses. EMTs are well versed on common problems, not the acronyms of complex diseases! So, leave the name of your illnesses at the bottom or on a wallet card.
What should you put for EDS? My suggestions are “frequently dislocates”, “organ rupture”, “tachycardia”, “spontaneous reactions”, “hypoglycemia”, and “fragile spine”. Your wording will need to be tailored to your particular case, but these are examples of simply phrased alerts.
You may have noticed that I got by Trinket over on my blog and wondered why.
My real name is Kyrsten (pronounces Key-rsten) but no one ever pronounces it correctly. I have been called Kristen, Kristine, Kristy, Kyrsty... the list is never ending.
So I am using a nickname that is easy to pronounce and was given to me by my grandpa!
Whether you’re stuck in bed or running a marathon or going to an appointment or working a double shift or making sure you stay on top of your treatments or going skydiving–no matter what your day looks like on ANY day, you are enough, just as you are.
Still a few days left to register and vote!
This is a glimpse of what I’ve been working on and will be pitching next week at @denverstartupweek
Pitch Competition. As part of the judging, 20% of scoring comes from public voting.
My goal is to someday offer medical grade compression that is specifically designed for people struggling with mobility, fatigue, or other disabling health conditions.
If you suffer from POTS Syndrome or any other type of chronic illness, I’d truly be grateful if you could take a few minutes and cast a vote for my submission by following the link in my bio.
💚🙏🏻🔥 He heals the brokenhearted and binds up their wounds. - Psalm 147:3 🔥🙏🏻💚
Alright homies, Cleavland Clinic is in 3 days!!! I'm going to start of the morning with an EKG, then I get to see the doctor that specializes in POTS, and then I'll have my very first tilt table test! A tilt table test is exactly what it sounds like, they strap you to a table and tilt the table up and down so your body goes from laying down, to standing up. While they tilt the table, they take your orthostatics (your blood pressure and heart rate as you lay and stand). I've only had my orthostatics taken when I'm laying down, sitting up, and then standing on my own. That's how I was diagnosed. But I've never actually been strapped to a table before! I'm not allowed to eat or drink for 4 hours before the test and they said I would be unable to drive for the rest of the day after the test is done. I'm a little nervous for it. And I'll know how many days I have to stay at the cleavland clinic after the first day is over. But I'm hoping to get some answers!
Fall starts TOMORROW!!! 🤗🍂🧡🍁🎃👻
I absolutely LOVE fall in New England!! 🤗❤️ #justsayin
I could NEVER live somewhere without all 4 seasons 😂 I see a lot of cider donuts, apple picking, corn mazing (yes, made that a verb 😏), pumpkin carving, boots and JEANS in my future 🔮🙃🍁🙌🏽✨👖👢
Tbh jeans have always been my nemesis.... how TF does anyone find them comfortable?!?! 🤔
🙄 there’s no denying my legs are my “problem area”... BUT with consistency and MF HARD work, I’m finally seeing them transform before my eyes! 🤪 •
I want you to feel confident AF slipping on those jeans this fall boo!! And still be able to eat all the donuts you want 😍🍩 (moderation is key DUH). •
Jeans Don’t Lie October accountability group starts October 1!! 🙊Just 10 spots girlies ... Link in bio or DM me! 🤗👭❤️📲✨
Dear feeding tube,
I never wanted you. At first, I was convinced you were going to ruin my life. That first week we were together was absolute hell, and I thought I was right. You were a mistake, and I hated you.
Then I started to get to know you. Slowly, you began to change my mind. Maybe this arrangement wasn’t so horrible after all. I learned your quirks, I cared for you every day, and you quickly integrated yourself into my routine and my life.
I realized that you were helping me too. Feeding my body the nutrition it so desperately needed and that my stomach so traitorously rejected. I began to feel better, stronger - and I knew it was because of you.
The day you became a button, my love for you grew. You were no longer uncomfortable, unwieldy, and unfashionable, and you became more a part of me than ever before. You are, dare I say, cute. Advocating for you was worth it.
Today, you’re so normal and natural and part of me that I can hardly imagine my stomach without a tube through it. You've given me my life back and helped me live it. If a feeding tube is the price of life, I’ll gladly pay it. You changed everything I thought I knew about feeding tubes and the people who have them. I know If I could go back, there is little I would change.
I still don’t want you, but I’m so, so thankful for you.
Happy One Year Tubeiversary, little friend.
CBD Cream for bone, joint, and muscle aches ⠀⠀⠀⠀⠀⠀⠀⠀⠀
Cannabinoid oil is extracted from the least processed form of cannabis plants called “hemp” and provide non-psychoactive (meaning you do NOT get that high feeling associated with THC) relief for numerous anxiety disorders, insomnia, chronic pain and inflammation, nausea, migraines, irritable bowl disorders, chronic autoimmune disorders, protection from neurodegenerative diseases, infections, epilepsy, skin irritations, mood, reproductive health, temperature regulation, and more.
CBD Cream is a topical alternative to CBD Oil. You can use it on your bones, joints, and muscles to decrease aches and pains, inflammation, discomfort stemming from arthritis flare ups, and skin conditions such as eczema!
There are many different CBD brands that use varying levels of CBD and other cannabinoids — Full spectrum and CBD isolate! They come in oil, topical cream, capsules, and gummies/food. Talk with your medical provider, test different products, and find what works for you! 🌞🌿
#CBD #CBDOil #CBDCream #CBDAwareness #Cannabinoids #Hemp #RemediPlus #EndocannabinoidSystem #Endocannabinoid #POTsSyndrome #PosturalOrthostaticTachycardiaSyndrome #POTsAwareness #Dysautonomia
I’ve gotten a lot of messages about how Vick (my partner of 3 years) and I keep our relationship strong, manage flares + maintain intimacy. Neither of us will sit here and tell you it’s easy to maintain a healthy, loving relationship, but we will tell you that when you do put in the work it’s worth it. So we’ve complied our top tips for keeping the love strong through the toughest of times:
1️⃣Accept each other weaknesses and celebrate each other strengths. Disabled or not, we all have strengths and weaknesses, and in a relationship, knowing these qualities & knowing when to use them to your benefit is important.
2️⃣Make time for each other, as a couple, at least every week. Life undoubtedly gets busy, with school, work, family, doctor appointments, etc. Set aside time to send focused on each other, even if its just an hour.
3️⃣If something is wrong, talk about it. Express yourself calmly and rationally. And if your partner has something to say, use active listening skills so they feel heard. If you’re heated in an argument, it’s okay to step away, calm down and then come back to talk
& 2 tips for maintaining intimacy
1️⃣Intimacy doesn’t always equal sex. As I’m learning in my sexuality class, intimacy can including kissing, massages, and touching sensitive part’s of your partners body like their neck, elbows, knees, etc
2️⃣Explore and understand your own body. As a person with a disability (mental or physical), your body might feel, look or operate differently than the typical person. This is O K A Y. Learning your own body will help your partner know what to do
There’s no doubt that maintaining a strong, healthy relationship with a chronic illness is more difficult. But my disability doesn’t, and shouldn’t, hold me back from finding love
(Watch out for a post tomorrow written by Victoria on her perspective on dating someone with a chronic illness)
ID: there are five selfies of Victoria and Natalie in various locations (the car, Disneyland, a forest, pride festival, and overlooking a city).
Tucking under the table at Wendy’s
Practicing down at a distance at Ryan’s
Good girly focusing on me while at Ryan’s
For some people having a feeding tube would mean it’s the end of their lives; for me it’s just the beginning
Meeting some friends at Ryan’s Pet Supply to get some things we need, train for a bit, and then go eat some lunch together! Should be lots of fun!
October is Dysautonomia Awareness Month.
Links in bio. Dysautonomia is an umbrella term for a group of conditions that affect the autonomic nervous system. The autonomic nervous system controls most of the body's automatic functions like heart rate, blood pressure, pupil dilation, body temperature, and digestion. People with dysautonomia can't control one or more of these functions.
Postural Orthostatic Tachycardia Syndrome, or POTS, is one of the most common types of dysautonomia. It is estimated that POTS affects between 1 million and 3 million in the United States, plus millions more world wideand that is just one of the many types of dysautonomia! Dysautonomia is NOT rare, just rarely heard of, let's change that! Raise Awareness!