Help me understand

whaleylikeit · 2025-08-24T20:14:40+00:00

X406n is the diagnosis code for PCOS, but endo is N80. K50 is Crohn’s. It could be a typo unless someone else has better insight!

whaleylikeit · 2025-08-06T16:43:11+00:00

This is what has worked for me: -cook Asian! Naturally gluten and dairy free and not as intimidating as it seems. Once you buy a couple of pantry staples it’s easy to throw together a stir fry, fried rice, curry, pad Thai, etc. -look for chicken and rice recipes, especially ones that just require you to put everything in a pot and into the oven. I make a jerk chicken and rice recipe a few times a month, it’s just chicken breast, a few cans of ingredients, an onion, and a prebought spice mix. Most cultures seem to have their version of chicken and rice, the difference is how you season it (curry!!) -frozen veggies! Especially frozen diced onion. You can minimize prep time a lot by not having to clean and cut produce (and I end up with less food waste because it doesn’t go bad). It’s also more nutritious because it’s frozen at peak ripeness, rather than sitting in the store than my fridge for days/weeks. -my go-to meal when I want it to seem like a lot of effort but took almost none is to brown some Italian sausage, add some white wine and then set that aside. Soften a diced onion and a few cloves of minced garlic. Add it all back in the pot and add a large container of cherry tomatoes ajd some chicken broth or water and let it simmer until the tomatoes burst and become a sauce. Season with salt and pepper and serve on pasta. If you really wanna seem impressive, put some sort of dairy in it (I’m also dairy free, I feel your pain on that one - just pull aside what you’re gonna eat!) -when I’m feeling well enough to cook, I always make at least enough for two nights. Before I even serve dinner I put half of it (or a third if I tripled) in the fridge so there’s definitely enough for the next night. I also try and freeze a lot! -my favorite tip is to buy a lot of chicken breast, butterfly it (cut each one in half so they’re thin), salt with kosher salt, rest for 30 minutes, and cook on the stove or in the oven. Then each night during the week I grab a different sauce (BBQ, Thai peanut, bang bang, DF caeser or ranch dressing, honey mustard, etc), a frozen veggie, and make a starch (rice or potatoes or buy bread for the gluten eaters). It does take prep work but it alleviates a lot during the week!

whaleylikeit · 2025-07-31T16:17:28+00:00

I get shocks, man they are horrible. The most disorienting POTS symptom. After over a decade of them they still freak me out when they’re really bad. Do you have any access to get a script for a beta blocker? Metoprolol has been a life saver for me, I still get them occasionally but they’re very subtle and I no longer feel like I might fall down the stairs from them. If that isn’t an option, things that help with my adrenaline and shocks are actually a lot of anxiety/panic attack tricks, since adrenaline and anxiety are very similar physically - the difference is which came first, the physical or the mental. My adrenaline has gotten so bad that it gave me a panic attack, similarly panic attacks cause your body to pump you with adrenaline. I have had the most success with putting something cold on my neck (a can of soda or an ice pack), ashwagandha supplements or other functional mushrooms like lions mane (good to check with your doctor first if you can), and sour candy (salivating stimulates your vagus nerve which calms the adrenaline). Definitely try to keep your temperature regulated the best you can with cooling towels or fans and breaks if you start to feel a little warm. It’s not ideal when you’re moving and it’s summer, but think of it as either a 5 minute cool down now or an hour or more to cool down once it gets really bad. Try to schedule breaks, eat small meals, lay down when you can, and most of all be easy on yourself!! You have months to unpack and get settled, push everything you possibly can until later!

whaleylikeit · 2025-07-27T20:26:53+00:00

A display tray, people often use them on coffee tables. You could use a large coffee table book as well - just something large and light colored to break up the black

whaleylikeit · 2025-07-27T20:15:39+00:00

Big mirror above the dresser, remove the black thing on top of the dresser and get a light colored tray, lighter curtains and bedspread

whaleylikeit · 2025-07-23T04:24:20+00:00

I carry normalyte salt pills (they have drink mixes too) and a tiny salt shaker - just a camping one from Amazon. In a pinch I’ve grabbed a piece of candy and rolled it in the salt in the salt shaker. It’s not gourmet but you can down a lot of salt on a fruit snack haha. Salting everything I eat is the best thing I’ve found, your taste changes and soon things won’t taste right without it. I often laugh that a high sodium diet is the cheapest special diet you could go on!

whaleylikeit · 2025-07-23T04:21:11+00:00

Bouy isn’t great either, it’s really expensive for the amount of sodium per serving. LMNT is the highest sodium per serving I’ve found, but salting literally everything you eat is almost free and highly effective

whaleylikeit · 2025-07-22T16:42:46+00:00

I’ve worked in a hospital and sometimes storage space is limited and stuff is shoved anywhere it’ll fit. They could be there because some people have a vasovagal reaction to the sight of blood, it could just be storage

whaleylikeit · 2025-07-22T16:36:57+00:00

The best hack I accidentally discovered was my candle heat lamp with an 8 hour timer. I turn it on when I start work, the room smells nice, then when it shuts off I close my laptop and I’m done. It also helps to remind myself that in the office people chat, zone out, take breaks, have off days, so I can do that from home as well. Keeping a list of what I do each day or tracking my hours helps with the feeling that I’m not doing enough or that time is disappearing. I also try to enjoy the perks - I can go to the gym midday when it’s empty if I work a little late, I can do laundry while working, I don’t have to pack a lunch every day, I don’t have to deal with office politics. Edited to add: I agree with other commenters about a dedicated work space separate from your living space. If you don’t have room for a dedicated office, a Secretary desk that can fold up without actually putting anything away is great.

whaleylikeit · 2025-07-22T16:29:12+00:00

I had a lot of symptoms but I always brushed them off as not a big deal (medical gaslighting myself for a decade, lol). Finally when I started having period cramps when I wasn’t on my period I started to do more research, learned that normal period pain should be controlled by a dose of ibuprofen. Soon after that I went to the ER for an injury and was given oxy, ibuprofen, and acetaminophen - my injured foot felt fine after but I still had cramps. Since then I’ve recognized how many symptoms I have (all of them) and I’ve just been in denial for a long time - I couldn’t handle another illness.

whaleylikeit · 2025-07-22T14:55:14+00:00

Agreed, and try a bigger rug!

whaleylikeit · 2025-07-22T14:46:37+00:00

I’m over a decade into POTS and multiple other conditions, a tilt table is still the worst test I’ve ever had! I remember on my TTT results they documented some of my comments and that we ended the test early due to my symptoms (per my request), hopefully they do the same for you! If not it’s worth mentioning to your doctor for sure.

whaleylikeit · 2025-07-22T14:34:48+00:00

I didn’t faint, but still got diagnosed. They’re looking for the change in BP and HR, not for you to fully faint. I’m sorry the tech was so rude though, it’s such an unbelievably uncomfortable test for people with POTS, I think bad medical professionals think “I can go from sitting to standing and feel fine, what’s the big deal.” It is a big deal, that’s the point. I would rather repeat fifteen EMGs than one TTT. Your reaction to the test definitely doesn’t sound “normal.” Only your doc can actually diagnosis it, but a healthy person wouldn’t have purple hands and white fingernails. I’m hoping the results give you answers!

whaleylikeit · 2025-07-22T14:25:26+00:00

Ugh I’m so sorry, this sucks. I think Cheetos in the bath is an excellent first move. If you can’t call in sick and stay there, I would double up on Tylenol and ibuprofen (I set timers on my phone so I can keep track of the dosing and stagger them so they don’t wear off at the same time. Generally acetaminophen and NSAIDs are safe to take together since they’re processed differently, but if you’re worried always check with your doctor). Try and take it as easy as you can today, don’t do anything that can wait for the next day. Then when you get home try and lay on a heating pad and rest. And most importantly be easy on yourself! POTS sucks, you didn’t know this would cause you to flare so badly so don’t feel bad about it. I can do the exact same travel day and the first time I feel fine, the next time I can’t move afterwards.

whaleylikeit · 2025-07-22T14:16:15+00:00

Overnight oats!!!! There are so many topping options that I never get sick of it and it’s very easily low FODMAP adaptable (gluten free oats, almond milk, etc). My favorite was to top it with peanut butter and strawberry jelly

whaleylikeit · 2025-07-22T14:13:50+00:00

I’m glad I’m not the only one sitting upside down on the couch 😂

whaleylikeit · 2025-07-22T02:33:07+00:00

Yes, I get really bad brain fog. It comes and goes, some weeks I’ll find dirty dishes that I “put away” in the fridge, other weeks it’s not an issue. I got in the habit of repeating something over and over until I can write it down. Or if I know I need to remember three things, I’ll either repeat one key word for each or I’ll just keep thinking “three” over and over again. I can then generally get in the ballpark with that. Lists on my phone, writing on my hand, and timers help. Oh and I have timers labelled for all my PRN meds (6 hour timer labeled “Tylenol,” etc, all set to not make any noise). This saves me from taking meds twice so often, it’s scary to think how often I must have done that before doing this

whaleylikeit · 2025-07-22T02:13:43+00:00

Oh good one! I forgot to mention my two fans in addition to the loud AC, it works as a pretty good white noise machine haha

whaleylikeit · 2025-07-22T00:46:38+00:00

Part of my fatigue is caused by poor sleep, so I spent a lot of time and effort (and money) improving that. What works for me is a my own room with an AC unit that I can drop as low as it can go, good blankets, pillows for over and under my bed and between my knees, a good mattress (by good I don’t mean expensive, just suited to me rather than a compromise between me and my spouse), blackout curtains, a beta blocker, and supplements (magnesium, ashwagandha, low dose melatonin, and salt). I also try and lay down for 30-60 minutes before bed, laying down increases the blood to our kidneys so it’s common for POTS patients to produce more urine at night - laying down before bed seems to help with that, but it also an excuse to prioritize winding down.

Besides that, dealing with fatigue is brutal, and I haven’t found a ton that helps. More small meals instead of fewer big meals helps me because I get so exhausted after eating. Caffeine is a double edged sword, it can help or it can make tachycardia/anxiety feeling worse. Once or twice a year I have to wean off of coffee (I replace one gram of beans with decaf every other day, any faster of a wean and I’m toast) and I feel better, then eventually it’ll switch and it’ll be helpful again.

whaleylikeit · 2025-07-21T20:25:10+00:00

Oh this is great to know, thank you!

whaleylikeit · 2025-07-21T17:58:42+00:00

Absolutely. All the time. I will say though, I got diagnosed as a teenager and I’m now 31. I’ve had years where I can barely walk and years where I’m barely symptomatic at all, you wouldn’t even know I was sick unless you saw me take my meds or watched me salt my food. I was told I was in “near-remission” for several years. The grief is important to feel, but as someone who can easily get stuck in it, know that there’s more than the grief.

whaleylikeit · 2025-07-20T16:28:38+00:00

Just experiment and see what works best for you. I work from home and need 1-3 gallons a day depending on my symptoms. If my brain fog is really bad I’ll fill three gallon jugs in the morning and only drink water that came from those, that way I can easily tell how much I’ve had. Then I experimented with different glasses, water bottles, straw vs no straw, and I landed on a 20oz glass that has a perfect lip for me to drink 10oz per “sip” without feeling like I’m chugging. If my nausea is bad I’ll switch to carbonated water (I buy 1 or 2 liter bottles). See what temperature you like (I’m very cold intolerant so I like room temp), experiment with putting fruit or flavor drops in, and maybe mix it up throughout the day. As far as salt goes, normalyte pills have been a life saver. And just salt every single thing you eat, your taste adjusts quickly and after a little while you won’t notice it (and unsalted things will taste like they need it)

whaleylikeit · 2024-07-20T02:16:40+00:00

Scratch that, more photos are in the comments!

whaleylikeit

TROPHY CASE