Ibs-qveen - Chronic Illness

and ibs otter, which i made mostly for me lol. i really want her name to start with cy…. cypres…. cyril….. hmm

May is a HUGE spoonie awareness month! 💙🥄

#als #lymedisease #lupus #asthma #mentalhealth #cysticfibrosis #arthritis #celiac #huntingtonsdisease #ehlerdanlossyndrome #multiplesclerosis #fibromyalgia #bechets #bpd #stroke #braintumor #mecfs

what are your thoughts on ibs diagnosis

78% of people reporting to ERs due to IBS have chronic gastritis.

population studies on microscopic colitis are rare, but have found that rates are much much higher on a population level than previously assumed

the symptoms labeled as ibs (diarrhea and constipation with no obvious flags for inflammatory bowel disease) are often treated as an issue of simple dietary intolerances, or as a psychosomatic condition, and people with ibs are told to follow various diets, or to "reduce stress."

these diets tend to be high fiber, which could literally kill someone whose actual issue is gastroparesis, or could severely aggravate microscopic colitis. i know that when i was trying to eat high fiber, my symptoms were completely unmanageable, and switching to a low fiber diet is the only thing that's helped at all. the food intolerance stuff can be really helpful for people who do have rare food intolerances, but for people who actually/also have autoimmune gastritis, it wastes time that could be spent monitoring for gastric atrophy, metaplasias, and precancerous lesions.

the worst part of this is that things like microscopic colitis and h-pylori related chronic gastritis are treatable, either with steroid medication or antibiotics to kill the h-pylori. but if you're dismissed with "dietary changes" or "reduce stress," then you're not getting treated for conditions that can cause really serious tissue damage and increase your cancer risk.

basically ibs is a "fuck you get out of my office" diagnosis

This site comes recommended by a friend of the blog, and oh boy does it look useful! Since it’s meant for use by doctors as well, the information it will give you doesn’t go through the kinds of “for the patient” filters you’d see on sites like WebMD.

The interface is clean and simple, and once you’ve gotten a list of conditions and selected one to investigate, it opens an on-the-page window for you with the Merck Manual’s entry. There’s in-depth data, a quick-view of the highlights of the condition, and there are even links out to other providers like Mayo Clinic, Medline, WebMD, Google, and more.

What’s particularly nice is that when you’re done looking at one condition, you can click “back to results” to get straight back to the list.

This one seems to do a good job of pulling up the common but quote-unquote rare diseases in the list, which certainly makes it feel a little more trustworthy.

Nonbinary folks, do note that it requires you to enter a binary gender.

Ah yes, my favorite chronic illness game: is this normal, is this new, or am I dying?

PSA as we go into spooky season and people start using activated charcoal to make foods look spooky.

It’s IBS Awareness Month, and honestly, I want to talk about the most annoying and frustrating part of IBS. I lose about an hour each day to it. That’s right. An hour. Half an hour in the morning, and half an hour in the evening. Yep, I start and end my day on the toilet, and while I’m nervous sharing this, I want people to think about that. Imagine being sick for an hour each day, every day, and there’s nothing you can do about it, and you lose that time. You have to wake up earlier than average people to get ready for the day, you can’t start your day until you’ve been sick for half an hour, and you can’t end your day until you’ve been sick for half an hour.

I have other symptoms as well, and I know everyone's IBS is a bit different, but wow, it is such a time waster for me.

It's too hot to exist. 🥵

Stay safe, SpoonieStrong fam. 💙🥄

friendly reminder you dont need a diagnosis to be in disability spaces, as an example im in constant pain and fatigue, have migraines every week and my joints hurts to a point I can't write, but since familiar gaslighting/medical trauma and the fact that im an indigenous, brown skin fat man a diagnosis is fucking hard (but im in my way! :)) , but i still deserve a safe space to talk about my experiences and to feel valuable and supported.

never feel like youre interrupting someone's space or that you shouldn't be here cause you dont have a diagnosis, disabilities existed before diagnosis

Medical Binder

You need a three ring binder. And sheet protectors. And tabs. “Why?”

‘Cause you need a medical binder.

What is a medical binder? A place that you store your medical information paperwork. All of it.

Why should I have this? Documentation. Insurance and medical care are all about documentation. If it’s not in writing, it didn’t happen and doesn’t exist. Why can’t you do it electronically? Because the internet can be compromised. No one can hack a piece of paper from a thousand miles away. Having a copy of your medical records means you have easy access to talk to a new doctor and get them up to speed.

For my fellow chronic illness people, this is what keeps you from going batsh*t insane if you see a new doctor or need to go to the hospital.

What should go in it?

Medical Records: This is a copy of whatever records you have from whatever appointments/visits you go to. Have a check-up? Get a printed copy. Have lab work run? Get a printed copy of records. ER visit? Printed copy. Surgery? Printed copy. Vaccine? Printed copy. I recommend having documentation going back at least five years. Include lists of any medications you’ve taken, along with start/stop dates. This is ideally a catch-all of everything you would want to tell a brand new doctor so they can immediately pick up where your last doctor left off. If you have chronic illnesses, this is where you want to include a history of it. Diagnosis, medications and treatments that have worked and not worked, and all symptoms/progressions you’ve noticed.

Medical Bills: Did you pay a bill? Print a copy of the receipt? Did you get a bill? Save it and then add the receipt after you pay it. Collections notice? Financial Hardship paperwork? Payment plan agreements? Print and add here.

Insurance Paperwork A copy of your ID card, a copy of your summary plan document, and any copies of your claims. Print it and save it.

Misc. Anything else related to your healthcare/bills that you could need. If you think in five years there is the remote possibility you could need this specific piece of paper, print it and save it.

These documents are important to have. If you're in an accident and you have everything on hand (or can have someone bring you everything), you're already ten steps ahead. Otherwise, your new doctor has to have you sign a HIPAA form for every single doctor you've ever seen so they can send your records to be reviewed blah blah blah. The main point is that process is time consuming and frustrating. Save everyone (and yourself) the headache.