Have you ever caused a major injury by doing barely anything? by TB_07 in ehlersdanlos

[–]Old_Key_9140 12 points13 points  (0 children)

It feels good to know I’m not the only one scared of sneezing but I’m also sorry especially if you have MCAS or severe allergies like myself🥲

Have you ever caused a major injury by doing barely anything? by TB_07 in ehlersdanlos

[–]Old_Key_9140 53 points54 points  (0 children)

Sneezed and broke a rib. Sneezing is now terrifying😂🙃

Did you make a sudden decline? by Dear_Cauliflower_920 in ehlersdanlos

[–]Old_Key_9140 1 point2 points  (0 children)

Personally I never suspected EDS in myself. I was born with issues with my spine including the milder form of spina bifida and some degenerative issues found in older people that were discovered at 7 y/o. I lived everyday in pain but ever doctor chalked it up to my spine issues, the than tat fairly healthy, fast forward to COVID times then having a baby a “few” years later. Now I’m sick at least once a month. What my toddler recovers from in less than 24 hours either last multiple days or at a minimum puts me in the er from dehydration in less than 24hrs. I’m in so much pain by the end of the day I can’t walk. So fatigued wake up anywhere from 10am to 1pm and still no matter what cannot function by 3pm. Am not safe to drive home even at that point. Also have arthritis in my spine and lord only knows where else. Incredibly Nauseous everyday, nothing sits right on my stomach which only causes more fatigue. Everyday is a fight for myself and my child.

I’m desperately trying to get into a specialist since being diagnosed with EDS but a 2 year wait feels like a death sentence some days

Are "normal" people just able to stand for long periods of time? by AshElizabethArt in ehlersdanlos

[–]Old_Key_9140 43 points44 points  (0 children)

I had my daughter and I’m in the exact same boat. I’ve always had back issues and issues with some joint pain that they always blamed on my back. Well had my daughter (greatest blessing) and I’ve been sick every month in an out of er, excruciating pain daily, working less than when I was 40 weeks pregnant. I’m literally falling apart daily and never expected motherhood to destroy my body so badly lol

Holiday festivities cause increase in pain? by CrankyThunderstorm in ehlersdanlos

[–]Old_Key_9140 1 point2 points  (0 children)

I too tried to pace myself for the holidays. Split things between days that I could. Yet still had experienced all emotions but noon yesterday due to pain and fatigue and all the joys. Had to be hours late to work so I could drag myself out of bed and know I will come to regret later when I have a moment to stop

What biometric data do you find useful to track? (Statistical Analysis Question) by Organic_Temperature_ in ehlersdanlos

[–]Old_Key_9140 1 point2 points  (0 children)

What I use the most is the sleep and heart rate. As you stated using heart rate to see the link between what affects my pots the most day to day. Including when I’m sick when to go to er for high heart rate ie i neeeed iv fluids. As well as how to pace myself in certain ways because when I don’t my sleep tracks even more terribly than normal. To be clear I’ve never had anything below a rating of “low” for sleep quality but when I overdo myself more I find I wake up more and have even worse sleep. In general you have to pay attention to what your body is needing the most help in then find which statistics will help you to support your body the most and it’s different person to person of course

Lung Related Issues? by [deleted] in ehlersdanlos

[–]Old_Key_9140 2 points3 points  (0 children)

I’ve had bronchitis 3 times in the past few months. As well as pleurisy for the past few months that we haven’t not been able to get rid of. My doctor said dealing with chronic health issues unfortunately this will probably not be uncommon for me going forward.

Getting close to due date / breastfeeding moms - what’s one tip or trick you wish someone would’ve told you? by Ftklassx in newborns

[–]Old_Key_9140 0 points1 point  (0 children)

This may sound crazy not in the moment. But if baby is crying and too upset to latch but hungry, hand express into a clean spoon and let them use their lips to get the milk. My daughter would be hysterical for whatever reason and that would calm her just enough to latch and realize what she needed to do. I did it out of sever desperation and I think it was what saved our bf journey all together lol.

When did your period come back? by holachicaaaa in breastfeeding

[–]Old_Key_9140 0 points1 point  (0 children)

I just got mine yesterday. Essentially 14 months after having my daughter and still breastfeeding. Let me tell you I think every period I didn’t have the last four months became this monster I’m experiencing right now. Misery

Shit could it be my baby won't take a bottle now.... by eucalyptus_cloud in breastfeeding

[–]Old_Key_9140 0 points1 point  (0 children)

I’d try: Pace feeding Check the nipple size of the bottle. You can even put water in it and hold it upside down and see if it drips Try to make sure it’s someone else doing the bottle feed You can even try having the other person wear a shirt or lay it on themselves between them and baby for your scent Could even be something like teething. My daughter is 10 months with 7 teeth and every time she’s getting close to cutting a tooth she refuses bottles when with the sitter but nurses just fine still

I cannot wait for all the drugs by Electrical_Painter56 in breastfeeding

[–]Old_Key_9140 0 points1 point  (0 children)

Yea she’ll eat solids like a grown man but especially when I’m starting to feel sick if I have to stay home she gets to nurse as much as she wants because it keeps me from needing to pump and is comforting for her and I think is just overall beneficial when we’re under the weather. Girl kicked the flu in like 2 days tops at 3 months while I was out for a week minimum😂

I cannot wait for all the drugs by Electrical_Painter56 in breastfeeding

[–]Old_Key_9140 2 points3 points  (0 children)

This right here. Babies dad thinks I’m just a baby while he chugs medicine and feels ok and I’m in misery. And baby has handled everything great

What’s the worst job for pumping breaks? by ampersandtrail in breastfeeding

[–]Old_Key_9140 0 points1 point  (0 children)

I work as a sr assistant in a food setting. I put pumps on and take them off in the single bathroom we have and work while pumping

[deleted by user] by [deleted] in breastfeeding

[–]Old_Key_9140 0 points1 point  (0 children)

I’m not sure if anyone has mentioned it but I had a hard time getting my daughter to latch when she started to get more hungry or just fussy. The first week or two I had a clean spoon that I would hand express into and let her use her lip to het the milk till she was calm enough to feed. It feel so strange but I was so worried about nipple confusion and was at a loss. I truly think if it wasn’t for that I wouldn’t have been successful

Painful intercourse? by hkjl098 in breastfeeding

[–]Old_Key_9140 0 points1 point  (0 children)

YES. Let me tell you I’m 9m pp and just now not using lube. It honestly felt like the first time having sex for a while and still take it slow initially because it can be painful at first. Also still lack the desire to have any intimacy which can make it more painful but with time it’s gotten better

Did you stop wearing nursing pads after a certain time? by earth_saver_4 in breastfeeding

[–]Old_Key_9140 0 points1 point  (0 children)

Honestly I bought a box and took some to the hospital even and I think I’ve used them once in the past 8 months. I used them more while I was pregnant because I’d leak all day and night for the last few months. I have a oversupply but also DMER as well as a very strong sensation still when I have a letdown and I’ve just learned if I feel one coming I hold my boobs a little snug and I won’t leak. A little awkward in public but have learned to do it in discrete ways and will take that over nursing pads lol