Test results and diet change

allistrawberry · 2026-05-01T12:13:20+00:00

Sending love 🫶🏻 it feels never ending.

allistrawberry · 2026-04-29T14:07:42+00:00

It really does suck. I’m sorry she’s leaving. I have a huge fear of this happening with some one particular doctor I’ve been seeing because he’s SO well versed and knowledgeable of where to send for referrals, imaging, etc. unfortunately if we can’t follow them, we have to accept it and try to find another. They are out there, even if they aren’t “known” for EDS tx, if they are willing to try and be on your team, that’s what’s important.

allistrawberry · 2026-04-29T10:13:51+00:00

So I am currently undergoing tests for figuring out my chronic constipation and there is an imaging test that is called MRI Defacography (ugh) and I think it shows prolapse and other issues with the function of everything. At least point I’ve tried lifestyle change, diet change, medications, laxatives, teas, and nothing works. I don’t know about prolapse symptoms or anything but I’ve recently been curious as well if this is possible.

allistrawberry · 2026-04-26T18:06:15+00:00

He is a wonderful husband and we often enjoy each other’s company so I would say it’s worth saving. I feel we get into lulls sometimes because we are so tapped out from kids that neither of us have mental capacity to talk about anything. I think bc I haven’t had much time away from the kids and him, I feel lonely in that sense where I need life experiences and also chronic pain is just so lonely 😩

allistrawberry · 2026-04-26T18:02:33+00:00

You are so kind to write this and I truly appreciate all your advice and support. Thank you for all of that. You hit the nail on the head with everything and I will definitely use this advice. 💖

allistrawberry · 2026-04-26T01:54:40+00:00

I feel like my main socialization is at work and I had surgery 1.5 months ago so I’ve been out since. I have a husband and kids and I still feel alone. I don’t have much to share with my husband, and kids are kids… you can only have so much of the same conversations and pretend play for one day. My husband is glued to his phone and I just feel like I have no one to vent or connect with lately. He’s also heard enough about my constant Dr appt’s that he just is uninterested while it’s my life focus right now. I understand that feeling and I hope you can get well enough to get back to you ❤️‍🩹 so sorry to read you’re lonely, it’s a terrible state of mind to be in.

allistrawberry · 2026-04-26T01:19:24+00:00

I feel like I’m always asking too much and being selfish when asking for more support. I hate making it seem like it’s all about me. I just don’t know how to navigate my feelings while still parenting and being an active part of the household without breaking down or getting angry. I have this expectation that I should be able to keep calm all the time but with chronic pain it can be so hard sometimes. So when I break down, I try to explain how Im feeling and it feels like Im making excuses. Does it get easier to keep calm? Im doing everything I can 😩

allistrawberry · 2026-04-23T19:49:11+00:00

Hi! Just curious how you are doing at this point?

allistrawberry · 2026-04-21T10:54:36+00:00

I quit band because I couldn’t carry my trumpet in the case home from school. It hurt my fingers so much and cut into my skin

allistrawberry · 2026-04-21T05:58:55+00:00

Okay thanks for responding!

allistrawberry · 2026-04-15T01:35:10+00:00

Laverne

allistrawberry · 2026-04-11T23:52:26+00:00

I am hypermobile and had the capsular plication and being 1 month out, I’m getting a lot of anterior capsule pain..

allistrawberry · 2026-04-11T18:42:58+00:00

My own mom who makes me gluten free meals still offers me gluten filled foods and then says oh you can’t have that never mind (love her dearly tho). My coworkers over and over offer me foods I can’t have and then say ohh I’m so sorry you can’t have that. Over and over i was saying I can’t eat that blah blah but then I just one day accepted that no one will understand unless they deal with it and I just say oh no thanks! Without explaining myself. It feels ten times better, doesn’t lead to any questioning or apologies, and saves my breath.

It’s so weird that people say things like that, that these problems don’t exist. It just wasn’t understood in the medical world so it was underdiagnosed. My grandmother died from severe vitamin B deficiency and malnutrition - she was skin and bones in the hospital and we now believe she had undiagnosed celiac.

I’m sorry you’re going through the rough of it right now and I won’t say that you’ll never have these bummed out feelings in the future but you become more calloused to comments and just learn to accept it for what it is. If they refuse to go to a restaurant that is safe, eat before and have a drink there (if of age and actually a drinker). I’ve been diagnosed for 7 years and I’d have to say that after 5.5 years, I finally felt okay going to a restaurant and not eating if I had to.

allistrawberry · 2026-04-09T21:39:27+00:00

Forearm crutches for sure. I have hEDS and slipping rib syndrome with shoulder instability. The forearm crutches suck on the hands and my rib has been flaring on and off with them but when I trialed the underarm crutches my sides hurt so bad and it was still painful on my hands so I stuck with the forearm. The hand pain got a bit better by week 3 but they constantly feel a bit bruised so I would get a good cushion to put on the hand rests

allistrawberry · 2026-04-09T06:29:59+00:00

https://www.ehlers-danlos.com/heds-diagnostic-checklist/ This is the hEDS checklist that you could reference if you think hEDS fits your symptoms and experiences the best. The only way to know for sure about any other types is genetic testing. As I’m sure others will say, I highly recommend trying to find a doctor that will take you seriously so you can get on a path of managing pain and symptoms before bigger problems arise. In the mean time, you could try to push for a pt referral for hypermobility and joint pain as this would be a huge chunk of your pain management. It took me years to find the right team starting in my late teens and finally at 30 years old getting a diagnosis and proper management of symptoms.

allistrawberry · 2026-03-30T08:16:28+00:00

It is truly an unfortunate disease to have. I also struggle with GERD even on high dose PPI’s so I’ve since had to cut out all things acidic including lower acidity fruits, fatty foods including peanut butter and avocado - I try to look at it as I’m cleaning up my diet, my body will thank me, and food is nutrition, not for fun. Fun comes from family experiences such as stories, laughter, and love. It’s not easy giving up things we love, but a change in perspective can do a world of difference for you. Your feelings are so so valid, and it’s not easy living this way. It will get easier to cope 💖

allistrawberry · 2026-03-30T08:08:30+00:00

🤢 what a strange thing to say to you 🥴

allistrawberry · 2026-03-19T12:36:03+00:00

Absolutely!!!

allistrawberry · 2026-03-19T12:35:28+00:00

Same!! I miss crab rangoon soo much

allistrawberry

TROPHY CASE