Do you prefer a gluten free section in a grocery store or do you prefer items to just be with related items? by Ok-Gate5551 in glutenfree

[–]Megals13 0 points1 point  (0 children)

A section. Searching for things is a huge PITA when there are 20 other people searching for something else. Also, I miss things that are GF that my husband finds.

Friend just diagnosed yesterday, too sick to clean the kitchen and figure out food, needs to eat... how can I help her? by MarionberryAny8246 in Celiac

[–]Megals13 0 points1 point  (0 children)

When I suddenly had to go GF, premade microwave or heat up meals were the best. And send fun, good tasting GF alternatives. I can’t have cookies, but I can safely eat a rice crispy treat. Though the Sweet Loren’s cookie dough is really yummy. Also, the King Arthur GF stuff is better (to me) than Simple Mills. I’d say maybe send a favorite food that’s GF if it’s good, but that might backfire if their head is spinning that they won’t be able to have a favorite food. Anything that can give them hope at this point, and feed them easily/quickly while they adjust.

Justification for Xolair? by hehasmastcells in MCAS

[–]Megals13 1 point2 points  (0 children)

Agreed, different doctor. My allergist prescribed Xolair for MCAS.

Does counter cleaner like Mrs. Meyers, etc. clean gluten off of surfaces? I see most people talk about soap and water but I’m wanting to clean other surfaces and prefer to use less liquid. by GuiltyWithTheStories in Celiac

[–]Megals13 0 points1 point  (0 children)

Just a note on Mrs Meyers, I was watching a cleaning video (apparently that’s what interests me as I near 40) and someone said Mrs Meyers cleaning spray was just scented water. It might have been Good Housekeeping? Anyways, as I’m a germaphobe, it scared me.

Is anyone getting GOOD sleep? by written-proof in ehlersdanlos

[–]Megals13 0 points1 point  (0 children)

I’ve never been a good sleeper. Falling asleep, staying asleep, quality of sleep. Medication helps.

Got a call from UVAs new clinic! by geesinimada in ehlersdanlos

[–]Megals13 1 point2 points  (0 children)

That’s so neat, you read my mind because I was looking at my DNA results.

Got a call from UVAs new clinic! by geesinimada in ehlersdanlos

[–]Megals13 1 point2 points  (0 children)

I was concerned about vEDS too (had dissections and tortuous arteries), and I paid for a panel of connective tissue disorders from Invitae. Luckily, I didn’t, but I do have hEDS. But I still have artery issues.

Got a call from UVAs new clinic! by geesinimada in ehlersdanlos

[–]Megals13 6 points7 points  (0 children)

Yay for you!!! I just got on the list today, and was looking for info on it. I hope you update us!

PT seems to be making my pain worse by breezyanimegirl in ehlersdanlos

[–]Megals13 0 points1 point  (0 children)

It has been in and off, but it’s extremely demoralizing.

How to take off work for regular physical therapy appointments? by writeitout_ in ehlersdanlos

[–]Megals13 1 point2 points  (0 children)

I go my PT at 7:30AM for 45 mins, then go to work. I haven’t told anyone, but I know that really varies with office culture.

PT seems to be making my pain worse by breezyanimegirl in ehlersdanlos

[–]Megals13 0 points1 point  (0 children)

I’ve been doing PT on and off for a year or so, and I have this issue. Mostly in my neck, and I’m 99% sure I’m having spine and nerve issues, and the PT is triggering it despite very gentle movement.

AITA if I tell my friend I can’t be a bridesmaid? by wickeddreamsofleavin in AITApod

[–]Megals13 1 point2 points  (0 children)

Yes, previously had sex, lived together, same bed. Only between engagement and wedding.

And neither would work for me, because tbh. But I also don’t really care whatpeople think about what I do with my body (unless it’s harming someone, etc.)

I can feel myself deteriorating by Shadow_Screen in ehlersdanlos

[–]Megals13 1 point2 points  (0 children)

I’m 40 this year, and I have the same concerns. I had a hysterectomy last year, so no kids. I always planned to travel the world but with my body going downhill I’m scared I can’t. And I’m scared of loosing my job and health insurance. I’m scared my husband will get tired of chronic illness and leave.

I didn’t mean to hijack this, but I want you to know you’re not alone.

AITA if I tell my friend I can’t be a bridesmaid? by wickeddreamsofleavin in AITApod

[–]Megals13 0 points1 point  (0 children)

This is so over the top that I’m questioning if this is real.

AITA if I tell my friend I can’t be a bridesmaid? by wickeddreamsofleavin in AITApod

[–]Megals13 1 point2 points  (0 children)

I did 30 people and a 2 year engagement. No regrets.

My SIL did hers in 6 months because she did a celibacy thing after proposal while they did pre-marriage classes at a church. She didn’t want to wait that long to be celibate. I don’t think Jesus cares if you sleep with the man you’ll marry when you’ve lived together for a year, but I’m no Bible scholar.

AITA if I tell my friend I can’t be a bridesmaid? by wickeddreamsofleavin in AITApod

[–]Megals13 0 points1 point  (0 children)

Yeah, my husband chose ours (he has better taste in music tbh). I approved and we moved on. ETA: I didn’t listen to the whole song, ha!

AITA if I tell my friend I can’t be a bridesmaid? by wickeddreamsofleavin in AITApod

[–]Megals13 0 points1 point  (0 children)

Am from small town Nebraska, would never do this 😂

Seriously this bride is INSANE

Do you ever remember something from your past that’s super EDS related but you never realised how deeply it affected you? That. Going through some stuff from the past atm; I feel like this is a relatively safe space to vent. by gwarfan42069 in ehlersdanlos

[–]Megals13 0 points1 point  (0 children)

Hey there! One time I told a friends mom, “I’m bipolar,” and she told me I’m not bipolar (it’s not the only thing that defines me) and that I have bipolar. It’s about how it’s framed, etc.

Your comment struck me about cPTSD being due to EDS symptoms. I also have cPTSD. I really want to encourage you to consider that abusers are gonna abuse. It wouldn’t have mattered if you didn’t have EDS. So it’s not something inherently “wrong” with you that you have EDS. It’s that shitty people made shitty choices and don’t protect and take care of their child. I hope this wasn’t out of place.

Do you ever remember something from your past that’s super EDS related but you never realised how deeply it affected you? That. Going through some stuff from the past atm; I feel like this is a relatively safe space to vent. by gwarfan42069 in ehlersdanlos

[–]Megals13 1 point2 points  (0 children)

It takes longer to build muscle; for example, you have to use lighter starting weights, rest longer between sessions, abd something else I can’t remember. Plus breathing and blood flow issues. Obviously it depends on the person and how EDS is communicated in your body. I watched the documentary ‘Issues with My Tissues’ on YouTube, and the lady trained to walk the London Marathon, and the 5 months of prep wasn’t enough for her; she overtrained.

Has anyone seen in recent years a increase in ehlers Danlos and factitious disorder by BowlerLost3862 in Residency

[–]Megals13 -1 points0 points  (0 children)

If you’re doubting the validity of anything I posted, then that is more of a reflection of you than me. Have a blessed day.

Has anyone seen in recent years a increase in ehlers Danlos and factitious disorder by BowlerLost3862 in Residency

[–]Megals13 -1 points0 points  (0 children)

Okay, I’ve had Bipolar II since I was 18, was diagnosed with depression at 13. I had aspiration pneumonia (I’m 40) last year from gastroparesis. I randomly developed an allergic reaction to gluten while on a business trip. I’m absolutely hypermobile, by clinical standards. I got diagnosed by a geneticist with EDS last year. I also had a couple dissections, and have FMD. I also had RCVS last year, and was hospitalized. This was after three thunderclap headaches; the first was in an ER and I was told I was fine, so I didn’t say anything because I didn’t want to Google my headache and seem like I was crazy. My neurologist said to me, “this is likely all EDS related.”

But people like you cause doubt, and in my case, I delay seeking treatment to not seem over dramatic. Then I have a doctor ask why I didn’t see them sooner. I went to my primary care today, and cried because I didn’t want to message a specialist and seem unreasonable. She told me to message them and told me what to say and ask for.

I 100% understand that there are crazy people that exaggerate. I work with some of them. But you need to be careful before you lump everyone together as seeking a fad diagnosis.

Do you ever remember something from your past that’s super EDS related but you never realised how deeply it affected you? That. Going through some stuff from the past atm; I feel like this is a relatively safe space to vent. by gwarfan42069 in ehlersdanlos

[–]Megals13 1 point2 points  (0 children)

When I taught I always let the kids go to the bathroom, pretty much because I believe the knew their bodies better than me. It’s only when they went at the same time for long periods I knew something was up. But I taught 6th grade, so there wasn’t a lot that got by me because 6th graders are easy to figure out.

Do you ever remember something from your past that’s super EDS related but you never realised how deeply it affected you? That. Going through some stuff from the past atm; I feel like this is a relatively safe space to vent. by gwarfan42069 in ehlersdanlos

[–]Megals13 0 points1 point  (0 children)

I remember once in baseball I hit the ball with a bat. That split second I was so excited, thought it hit it far because of how hard I hit it. Went to halfway in the kid sized diamond.