cait @caitrol - Tumblr Blog

I’m turning this into a vent/rant/idk account.

Of course I’ll use TW or CW when needed because frankly there’ll be a bunch.

Things I’ll be discussing:

OCD, anxiety, chronic pain, hEDS, glp1 management, weight issues, ARFI, and my thoughts about things.

I am not pro-ana or anything of the sort. Eating disorders are real and dangerous. I literally am diagnosed with one and it’s ruined my life.

I will be talking about me losing weight however I wish to reiterate that I am doing this healthily with doctors watching. I just wish to document my feelings and how it’s worked for me.

#rant #vent #chronic pain #chronic illness #glp1weightloss

cw: talk of weight, glp1 management, ARFID

Day two of the glp1 has begun.

Woke up not nauseous but became nauseous again after taking the pill. I’m determined to do better today. Got water with electrolytes (which I’m supposed to take regardless of the glp1 so I gotta be better with it) and I’m heading out to stock up on my protein drinks.

My bf was worried since I felt no hunger yesterday and basically only ate a handful of crackers so he “bribed” me with some of my favorite foods. Big mistake on my part, greasy food is not the choice.

The main problem is I have something called ARFID (avoidant restrictive food intake disorder) and I already eat a very small amount of food. Most of my safe foods are unhealthy and the glp1 does not like them based on my research. There is healthy safe foods so I’m trying to stick to them especially in the beginning when the nausea is the strongest.

I’m hoping since I have such a strong reaction to the lowest dose I won’t have to continue up to the highest dose as it costs more and I already don’t have much extra cash being a college senior and all.

CW: discussion of weight and glp1

I started the wegovy pill today. I’ve been waiting for this for almost a year.

Already nauseous and not wanting to eat but I’m slowly drinking a protein shake. I’ve been reading about it and trying to make sure I’m doing everything right but I’ll take any advice.

I was supposed to be on zepbound but couldn’t afford it, so wegovy pill it is.

I’m using it for weight loss yes, but I’m also using it off label for inflammation, and after many people with my conditions improving on these types of medications. Im under a doctor’s care and guidance as well.

Starting weight is 266 (6/1/26)

And my goal is under 200 lbs and eventually 150 ish. I’ll try to update the weight monthly but I do have body issues and I don’t like to weigh myself so we’ll see.

#glp1weightloss #glp 1 drugs #glp1support #glp1

squirrelstone

Maybe if people updated more we wouldn't turn to ai

You’re a pathetic, impatient loser. Fanfic writers owe you nothing, and their writing is their own, not yours to do with as you choose, you entitled brat.

ballard96

crip-crap

im sick of people trying to "help" yes ive tried getting more exercise. yes ive tried diets. yes ive tried supplements. yes ive tried physical therapy. yes ive tried praying. yes ive tried fasting. yes ive tried essential oils. yes ive tried "Top 10 Ways to Relieve Chronic Pain. You WON'T Believe Number 7!!!" yes ive tried a chiropractor. yes ive tried anxiety meds. yes ive tried going to every doctor that will take my damn insurance. yes ive tried not thinking about it. yes ive tried anything you can suggest. now am i allowed to do what works for me? no? i still have to try all those things again? and a parasite cleanse now? fuck this

bbcphile

It’s May, which means it’s Ehlers Danlos Syndrome Awareness Month!

Since it’s massively underdiagnosed, I figured this would be a great occasion to share some of my favorite infographics about this condition. (And for any of you who have been wondering why my personal posts here are basically all about medical mishaps and weird injuries: it’s because of hEDS and comorbidities.)

To any of my fellow zebras out there, we will make it through this!

theconcealedweapon

depsidase

talkethtothehandeth

My partner being able to recognize my meds by name and even by *look* is so hot to me I’m not even kidding, like yes you pay attention to my needs let’s make out rn

caitrol

EHLERS DANLOS SYNDROME DIAGNOSIS HELP

Hello! Some background I’m a current college student and have hEDS. I’ve started showing concerning symptoms at 16, and was diagnosed last year at 20.

I did not get genetic testing. Genetic testing is relatively new and many insurances won’t cover it. For the hypermobile type, it’s not as strict since research has not discovered the specific genetic mutation. For the other types, it’s more important to have genetic testing. Please look into payment plans and student/AARP/military discounts. No one should ever go into medical debt for proper testing.

Ask around! I called multiple doctors’ offices to ask if they were knowledgeable on the condition. I actually planned on going back to a pain clinic and simply went to a primary care provider to get a referral and found the best doctor. Don’t only look at specialists, PCP and other family doctors might be able to help you. (Plus depending on insurance, it’s cheaper to go to a PCP than a specialist).

Join facebook groups! (Though I wish I could avoid anything and everything owned by Meta.) I’ve found multiple EDS support groups in my area to ask about doctors, tricks/tips, and questions. Not all of them are great and not all of them are factually correct, but it can be really helpful to find a good provider that is educated on EDS.

Have all your symptoms written out. Maybe it’s just me, but the brain fog is so real. I tend to forget all what I want to say if I don’t make a note of it. I have all of my symptoms on paper along with family history. I think it was helpful to split it into childhood, symptoms started, and current symptoms. Depending on your family history, if you can identify who might have EDS, write out their symptoms too. It’ll only help to prove a family history.

Get a second opinion. I saw two doctors that said I had hEDS but refused to diagnose me without expensive genetic testing until my third doctor ruled everything out again and took months to make sure the diagnosis fit.

In the end, a diagnosis isn’t everything and EDS may not be your diagnosis. Please still advocate for yourself and your health. You’re allowed to celebrate being diagnosed, just like you’re allowed to be upset. Everyone will feel different about it.

awesome-but-sad

While genetic testing isn't necessary for an hEDS diagnosis, you DO need to get it at some point. The subtypes of EDS can present similarly, so you need to rule them out to make sure you don't need additional care. It can wait because you shouldn't feel presured into medical debt for the tests.

caitrol

Genetic testing is new, it only recently began to be used in diagnosing. I do not have symptoms of any other EDS type, hence why it took months of me and my doctor going through every single checklist. I’m not getting genetic testing until the genetic mutation is found. The testing is expensive and for me.. a waste of money

EHLERS DANLOS SYNDROME DIAGNOSIS HELP

Hello! Some background I’m a current college student and have hEDS. I’ve started showing concerning symptoms at 16, and was diagnosed last year at 20.

I did not get genetic testing. Genetic testing is relatively new and many insurances won’t cover it. For the hypermobile type, it’s not as strict since research has not discovered the specific genetic mutation. For the other types, it’s more important to have genetic testing. Please look into payment plans and student/AARP/military discounts. No one should ever go into medical debt for proper testing.

Ask around! I called multiple doctors’ offices to ask if they were knowledgeable on the condition. I actually planned on going back to a pain clinic and simply went to a primary care provider to get a referral and found the best doctor. Don’t only look at specialists, PCP and other family doctors might be able to help you. (Plus depending on insurance, it’s cheaper to go to a PCP than a specialist).

Join facebook groups! (Though I wish I could avoid anything and everything owned by Meta.) I’ve found multiple EDS support groups in my area to ask about doctors, tricks/tips, and questions. Not all of them are great and not all of them are factually correct, but it can be really helpful to find a good provider that is educated on EDS.

Have all your symptoms written out. Maybe it’s just me, but the brain fog is so real. I tend to forget all what I want to say if I don’t make a note of it. I have all of my symptoms on paper along with family history. I think it was helpful to split it into childhood, symptoms started, and current symptoms. Depending on your family history, if you can identify who might have EDS, write out their symptoms too. It’ll only help to prove a family history.

Get a second opinion. I saw two doctors that said I had hEDS but refused to diagnose me without expensive genetic testing until my third doctor ruled everything out again and took months to make sure the diagnosis fit.

In the end, a diagnosis isn’t everything and EDS may not be your diagnosis. Please still advocate for yourself and your health. You’re allowed to celebrate being diagnosed, just like you’re allowed to be upset. Everyone will feel different about it.

#hypermobile ehlers danlos #ehlers danlos syndrome #hypermobile eds #chronic pain #chronic illness #chronically ill

TIPS AND TRICKS FOR hEDS AND POTS

(Hypermobile Ehlers Danlos Syndrome and Postural orthostatic tachycardia syndrome)

First some background, I am a college student living in a dorm. Had my symptoms since 16 and was officially diagnosed at 20. This is what works for me and my symptoms. I’m still learning more and more about POTS as it was kinda shoved under the rug for me.

- for low blood pressure have salty snacks. I personally hate flavored water and unflavored electrolyte water still tastes weird. I have a little snack corner with snacks and salt in case my blood pressure drops

- be a part of the disability program at your school!!! Even if you don’t need a specific accommodations join it. It helps the school and your teachers be aware. Since I’m part of my schools programs, if needed I get get a ride to my classes.

- TENS unit!!! This thing is my lifesaver when I have a dislocation. You can get some on amazon but depending on insurance, you can get one covered as well.

- eat more protein. Diet won’t cure anything but I find having more protein has really helped with my energy levels. I don’t eat much meat myself but chicken is always a good one. I also get Kodiak protein muffins (the double chocolate ones are good, rest are meh), fair life milk (more protein compared to most other brands), and fiber granola bars. I’ve found that fiber bars tend to have protein and vice versa.

- supplements!!! Most patients with EDS will have some vitamin deficiency. For me it’s B12 and D3 (which I find is most common) Talk to your doctor of course but supplements can help keep your body normalize better.

- mobility aids!!! Always talk to a doctor or physical therapist to ensure you are using them correctly but my cane really helps on certain days. Don’t go through insurance because you can easily get a nice cane for cheap online, insurance will only cover so much use it for bigger items like a wheelchair.

- fans. I’m always overheating, I keep my room cold and have a fan going most times. I just cover myself in blankets if I’m cold. Just easier for me personally.

- compression socks! I personally don’t like most compression items as they bother me but my ankles are really unstable. I got two compression sleeves at Walmart and they help me feel more stable walking. Sole inserts as well.

- If you have a high arch get some good hiking/running shoes, I love my Hokas. Sadly they can be expensive but there’s many cheaper options available! (I’m unsure what is best for those with flat feet)

-chronic fatigue, make a schedule that can account for naps if needed. I ended up taking sleep aids and it has really helped. But even just being able to have the luxury to take a nap if needed has really been helpful

THINGS I WISH I DID FOR COLLEGE

- ask about the dorms!!! I was under the assumption everything would have an elevator and my apartment on campus does not.

- if you use a shower seat, always ask which dorm has accessible showers.

- as stated earlier sign up with the disability services right away. It only helps with finding dorm housing.

- get a single room if you can! My medical equipment and pills takes up space and it’s much easier to keep it locked and secured when alone vs with a roommate.

Feel free to share more!! There’s always room to learn and discover new things

#ehlers danlos syndrome #hypermobile ehlers danlos #pots syndrome #potsawareness #chronic illness #chronic pain #chronic fatigue