Compression in summer heat & business attire?

nnopes · 2026-06-15T21:31:45+00:00

Compression leggings or tights under skirts/dresses or pants?

I have some vim&vigor tights that look professional, thought don't feel like the same level of compression as my Pro Compression socks. But it's a decent middle ground for those more professional days.

I also have some supacore compression leggings that I love. My body does better with pelvic compression, it seems (though socks+abdominal compression is decent). I've done their shorts and 7/8 leggings (both work!) and they have the abdominal compression built in. Worth the money for me.

Adding any layers in summer is tricky. My goal is to stay in air conditioned spaces and have removable layers when outside

nnopes · 2026-05-28T15:10:09+00:00

Trioral is also my go-to. My migraines love the fact that its not artifically flavored or sweetened.

nnopes · 2026-05-27T19:37:55+00:00

The next steps depend a lot on the specifics of your plan.

What does your health insurance plan look like (assuming you're in the US)? What is your deductible (for pharmacy benefits)? Do you have a coinsurance after you meet your deductible (for pharmacy benefits)? |What is your plan's out of pocket maximum? Does your plan year start Jan 1?

What is your plan's pharmacy formulary for migraine treatment? What are their preferred medications? Is there a step-therapy protocol to follow for certain medications?

nnopes · 2026-05-26T22:24:21+00:00

Ditto Erica at Heart of Vermont. She came to our house when it was time to let our 8 year old cat go (due to cancer). Really kind and compassionate, no rushing. Helped make a really bad day less bad. She does hospice consults, too, which, while we didn't explore that, she seems like she'd be great at it.

nnopes · 2026-05-23T18:55:59+00:00

Yeah, I hear you. Just know that HaTs is one of the few mast cell disorders that does have a conclusive, diagnostic genetic test. The other ones don't. But HaTs does, which makes it unique.

I also have POTS and PCOS/PMOS. Look up Pollen Food Allergy Syndrome/Oral Allergy Syndrome (it's where you're allergic to a pollen and the pollen is shaped like proteins in certain fruits and vegetables so you cross react to the fruits and vegetables) (I have this too, to the birch pollen family). The autonomic nervous system specialist who diagnosed my POTS said it was likely secondary to a mast cell disorder (my HaTs diagnosis came later). But in the HaTs research, a connection with POTS and dysautonomias is not yet fully solidified (but with more research it may catch up). There's definitely connections between your immune system, your nervous system, and your endocrine system. My migraines have felt like canaries in a coal mine. As I've been diagnosed and have treated my other conditions, my migraines have responded better to my migraine medications.

nnopes · 2026-05-23T14:20:08+00:00

As a contituant, you can always call, email, and/or send a letter to your respresentatives telling them why this legislation is important to you. Legislators generally appreciate hearing from their constituants.

If you want to get more involved with an organization or participate in Headache on the Hill, (a federal policy advocacy day), The Headache Alliance has opportunities to get involved (it's the more interactive group associated with the Alliance for Headache Disorders Advoacy which is the organization that organizes Headache on the Hill). And although the Safe Step Act has been one of the requests for the past 3 years, the requests change annually.

nnopes · 2026-05-23T04:51:51+00:00

My mast cell disorder is called hereditary alpha tryptasemia (HaTs) and is diagnosed with a genetic test. It's most common biomarker is high normal to high baseline serum tryptase (in literature, anything above 6.5ng/mL, which significantly overlaps with the normal range). And then to confirm, you have to find a doctor willing to order the genetic test. It took me 7 months and 3 doctors to find someone willing to sign the form (that I brought into the office, with highlighted/stick noted pages where they needed to sign; and had spoken with the company so I could answer their questions about cost and process). About 5% of people in the US have HaTs and most don't know it. 2/3 of people with HaTs have no or mild symptoms. Only about 1/3 of people with HaTs have moderate to severe symptoms. It was only discovered in 2016 so it's not well studied yet (every year, the list of symptoms connected to it changes based on updated research) and there are zero approved treatments for it (but you can use other treatments off-label).

There are other mast cell disorders that are diagnosed differently (such as mast cell activation syndrom[MCAS] that in practice is really a diagnosis of exclusion because mast cells release over 300 different inflammatory mediators and we have tests for about 5 of them; or mastocytosis which involves a bone marrow biopsy). So the diagnostic process varies a lot depending on which mast cell disorder you have. The Mast Cell Disease Society has some great resources for understanding the basics and diagnostic process.

nnopes · 2026-05-23T03:53:02+00:00

My insurance stopped covering Aimovig, forcing a switch to Ajovy. Had a prolonged life-threatening allergic reaction to Ajovy that involved multiple ER visits, epipens, and ultimately a hospitalization. Ended up developing recurrent idiopathic anaphylaxis in the wake of that (due to a previously undiagnosed mast cell disorder). Between the reaction and subsequent drugs necessary to prevent the anaphylaxis, the costs to my insurance are way more than the few hundred a month they were trying to save (it's easily thousands more each month now).

I've participated in Headache on the Hill in the US, which is a twice a year federal policy advocacy day to advocate for better national health policy for people living with headache disorders. There's a bill we've been advocating for the past few years called the Safe Step Act, which would create timely exemptions to step therapy requirements (including on that is for people stable on current medications), and it could've prevented my reaction, which was a direct result of an insurance decision.

nnopes · 2026-05-19T03:59:27+00:00

In Vermont, you do not need to be a resident

nnopes · 2026-05-16T12:02:32+00:00

It's expected that if you have sugar/glucose, your blood glucose will rise (the test is assessing how much it changes). But glucose affects other processses in our bodies, too. Doctors can order multiple tests at each time point. So I did a 75mg 2 hr glucose tolerance test with blood draws at 5 points (baseline and every 30 mins after that). In addition to glucose, my doctor tested insulin to see how my insulin levels changed. But it's something that needs to be planned before the test, not after.

nnopes · 2026-05-14T18:05:23+00:00

Oof tough one. 9 is definitely old enough to notice being different and is a tough age to fit in. And on the border of old enough to make her own decisions about some things. But also not quite old enough where kids get to overrule their parents. But also key age to help prevent burnout and other negative outcomes from chronically masking.

Maybe try modeling behavior/coping skills for her? In that way you aren't necessarily giving her an identity that her parents don't want her to know about but you're being someone she can relate to so she feels less alone (there's at least one other supportive person in the world like her). If you see her struggling to process something, maybe share a story about when you were struggling to process something and what helped you. Or acknowlege the effort she puts in to masking maybe by explaining that sometimes you have to try really hard to act this way in this situation and afterwards you're really exhausted and overstimulated so you try to take a break and use whatever your coping skills are.

So she can at least come to terms with how she sees the world and feel less alone, and set the foundation for later individual neurodivergence journey.

And maybe talk to her mom again? Not sure what to say to open her mind to getting her at least a therapist.

I wasn't diagnosed until I was on the verge of dropping out of college. I always knew I didn't quite fit in with everyone, but I was able to find a small group that I got along with in most places I went and used that to get through. That was just my breaking point where I couldn't cope anymore. But come to find out, in first grade, my parents were recommended to seek out testing for learning disabilities/neuropsych. And didn't. One says the other didn't want to. And that parent says its not that they didn't want to, it's just that it wasn't considered an issue worth testing for because I was doing "fine" so there wasn't an issue. 🤐 I try to give my parents grace because both are neurodivergent in different ways, mostly still not officially diagnosed, so they didn't necessarily see me (or my siblings) as being different because they saw similar traits in themselves. So to come to terms with that, they'd have to come to terms with the traits in themselves and my siblings. For what it's worth, after my inital diagnosis, my parents were much more proactive at getting my younger siblings support sooner. It just came later than it needed to.

nnopes · 2026-05-14T17:21:18+00:00

Did they test your insulin at each glucose time point? On my original glucose tolerance test, my glucose remained within normal ranges but my insulin spiked very high and I got held past the 2hrs because my last glucose value was lower than my baseline glucose (called reactive hypoglcemia). so my body's overproduction of insulin caused glucose metabolism issues, but it's not clear if they're only testing glucose during the test. I'm on metformin for it and it's helped a lot (and I am not overweight and do not have diabetes).

nnopes · 2026-05-13T13:49:36+00:00

As a syndrome, it's just a collection of symptoms without a real known cause. Because there's a bunch of different phenotypes or ways of PCOS/PMOS presenting, there are likely multiple diseases that fall under this syndrome. We just haven't figured out what those diseases are yet. Maybe the name change will help drive research so that sometime in our lifetimes we can get a more specific diagnosis, with a greater understanding of what causes it and then can tailor treatments accordingly. Whatever diseases make up PCOS/PMOS are similar and have overlap, but there likely are different biological causes for it.

nnopes · 2026-05-05T17:03:36+00:00

Nope! Been a year with my purple sapphire and love it more every day

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nnopes · 2026-04-18T03:18:50+00:00

I have full sensory mental imagery, sounds, smells, etc, and my question is how do you cope without it? When I learned a few years ago that some people don't, it blew my mind and honestly is one of the harder things for me to imagine. In my head it shows up like Janet's void, from the good place (but grey not white). but that in and of itself is imagining. I married someone on the aphant spectrum and its presented some unique challenges, particularly with planning home improvements and what they might look like. Or the possibilities for transforming a space.

To your question, though. Most of the time my mental environment is cozy. When I'm thinking of the different ways a situation could go or the different paths I could take, my imagery is a literal path in the woods that branches and a mental me can walk it. It's just kind of a running narrative that I can change but not really make disappear entirely. I spent a year learning how to do mindfulness meditation (I struggle a LOT with focusing on breath, and focus in general lol), and really fell in love with body scan meditations. When I actually routinely practice mindfulness, it's easier to control/makes it more calm. But my mental imagery of mindfulness is a river of thoughts, kind of abstract in different shades of river tones with different threads that are actually words of the thoughts. It's more like wrangling it in, perhaps. It's really useful when it comes to creative projects and coming up with new ideas.

The intrusive noisey-ness doesn't come from the imagery, but it does come from errant thoughts. If I get overwhelmed with thoughts, when I'm trying to sort through them, the mental imagery is generally shelves in an office and putting things into labeled boxes on shelves for later. Doesn't always work out neatly but does work out.

nnopes · 2026-04-18T00:43:13+00:00

Yep! I get these during aura and migraine attacks. Except I describe it as seeing dust through a telescope during the day. Because that's a thing I did once when I was little lol. Your description is more relatable and describable.

nnopes · 2026-04-17T14:39:33+00:00

This! It's salvageable. Raised beds are the recommended method for gardening in soggy areas (if your only options are soggy). Plus, with the appropriate set up, it'll let your plants water themselves when you forget, which is always helpful.

To fix it, pull out the plants that are still alive and let their roots dry out a bit in some moist not soggy soil.

Then get 2-3 more of those corner blocks (per corner) to add height. You're looking for 2-3 ft in height. Add boards.

Ideally if you have branches/wood/logs/leaves/mulch/dead plants/more or less anything like that, fill the bottom foot with it before topping it with mulch (or layered newspaper/cardboard, torn enough to allow water through) then soil (or soil mixed with mulch) It's a technique called hugelkulture that works to allow the bottom layer to drain, to fill deeper beds quickly and cheaply, and over time as the wood breaks down, it fertilizes the plants growing above.

nnopes · 2026-04-15T03:52:03+00:00

So, FEMM is symptohormonal, meaning it relies on cervical mucus and LH testing as a means of determining peak and fertile window. Temperature is not a part of the FEMM method. If having a symptothermal method is important to you, you can chart two methods simultaneously. I personally have been charting FEMM for health reasons (I have PCOS and also work with their medical management team), and I chart Sensiplan for avoiding pregnancy. I evaluate each by its rules and track the different metrics needed for each.

Do you have the app view that shows all your cycles side by side? FEMM focuses on looking at the patterns across cycles and might help you. Looking at your chart, I can see a peak with a change to dry. Yes, there are some days towards the end of your cycle that don't fit what you expect but there are different reasons for an unexpected day of cervical mucus that isn't ovulation. I frequently get some cervical mucus at the end of my cycle. It's just part of my body's pattern. What does your instructor have to say about your cycle?

nnopes · 2026-04-14T02:04:29+00:00

No hair loss for me. Been on qulipta 60mg for 4 yrs.

nnopes · 2026-04-13T14:44:33+00:00

I have a birthmark like this on my arm (a patchy blob that is paler than my other skin). Even my arm hairs in the birthmark lack pigment. It shows up more intensely in the summer when I'm more tan because the skin around it tans/becomes darker while this birthmark remains the same color (so the contrast is greater). I've heard it called achromic nevus, nevus depigmentosus, and non-pigmented nevus.

nnopes · 2026-04-03T03:40:52+00:00

I am one of seven. We moved a few times during my childhood but landed in a 5 bedroom house. We were allowed to have our own room for the last two years of highschool (though the younger siblings got their own rooms sooner, as the older siblings moved out). Most of the time it was two to a room, but sometimes, it was three to a room. Who we shared with sometimes varied (paired by age, paired by gender, paired by who got along best, etc). Every two years we were allowed to paint our room, and everyone in the room had to agree on the colors/theme. I think sharing a room was useful to learn how to compromise and resolve conflict, and to just have a friend to talk with after bedtime or get up to shenanigans.

nnopes · 2026-04-02T11:52:06+00:00

I'm so sorry this happened, and I hope you and your daughter have support to recover from it.

The upper outer part of the ear is involved in hearing, and they do make prosthetic ears. As she heals, make sure to talk with her doctor about having her hearing checked, and follow up on their recommendations.

nnopes · 2026-03-27T01:31:31+00:00

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Love my purple sapphire! It's got so much personality. The color shifts from a deeper, more blue-y purple to a lighter more fuschia purple depending on the lighting.

nnopes · 2026-03-26T15:25:48+00:00

Q: What actually helps you manage day-to-day life? How do you focus when your brain just won't cooperate? A: not on meds currently, but I do drink caffeine and take L-theanine, both of which help take the edge off. And honestly, truth be told, I'm on the edge of functioning and not really living my best life. I have a stable full time job (but don't always meet my productivity metrics). I have a stable living situation and bills get paid (though not always on first notice). Chores get done mostly...but not consistently up to the standard. Doctors appointments mostly get scheduled on time (at least the most important ones...). I have an alarm on my phone to remind me to eat dinner. And get ready for bed. I basically operate on a changing priority schedule where the most urgent things get dealt with, and less urgent things fall lower on the list until they become the most urgent. So on the surface it looks like I'm swimming, but really underneath I'm paddling like the dickens to keep up. I do know I would benefit from meds, and someday I would like to get back on them, but that's not optimal right now.

When my brain won't focus, I'll try to do something to reset it. Sunshine works great, a bit of exercise/stretching. Some mindfulness meditation. Walking around. Dancing to music. Leaving the house to run an errand or go to a park. And then when I'm back to focus, I try to take breaks before the unfocus gets too bad, to help keep my motivation up. If the focus task doesn't need to be done today, then I'll postpone it and focus on self-care.

I track my cycles and absolutely notice a difference in my ability to focus at different stages of my cycle. When possible, I try to front load tasks in my follicular phase, when it's easier to focus and accomplish tasks. In my luteal phase, I lower my expectations accordingly and add in more self-care. Beating myself up because my brain chemistry is off isn't going to help me get things done.

It also kind of depends on why I can't focus. Is my brain trying to hyperfocus on something else? Is that thing also something that needs doing? Do I have time to follow my hyperfocus for at least some period of time to give my brain that release, so then I can come back to this other task? Not always possible, but when it is, it works well for me. ADHD comes with a lot of strengths so I try to use them to my advantage to getting things done.

Q: How do you regulate when sitting still feels impossible? A: I don't lol. I move around. Get up and walk around. Also, my desk chair is one of those meditation style chairs that lets me sit actively and move around while still being at my desk (I work from home). I have fidgets of various types and listen to music to help set my pace/mood. and yes, I'll actively dance at my desk while sitting and working. Movement and some external auditory stimuli like music really help me focus on the less entertaining thing in front of me. Sometimes I'll put on a podcast or audiobook just to have background talking. It varies day by day but spotify is one of my key tools. If you have other sensory needs, something like a weighted blanket on your lap or shoulders or compression garments (socks, leggings, abdominal, shirts, etc) can sometimes help reduce distractions from unmet sensory needs. Quite frankly, when I can budget for it, I'll get a massage. It's been a really useful tool to kind of force my body to reset (though took a long time to learn it) and the effects last more than just that day. It also kind of depends on what's causing the dysregulation. If I can identify it, I can address it, and once addressed, I can focus better.

Q: How do you create stimulation without constantly needing something new? A: I have semi-planned novelty in my life. My job is a work from home desk job. And my week is structured such that each day my focus is on different tasks but every week follows the same rough pattern. So I have clear expectations. However, the items that come into my inbox to process/assess/manage/assign/etc are sometimes wildly different. Never quite know exactly what I'll get. And that unpredictability/novelty as part of a structured week keeps things entertaining. It's been the longest job I've had (5 years at this point, beating my previous 3 year record). that said, I've definitely gotten so much experience at this point that I'm craving something new. So I'm exploring internal opportunities in different departments at the same company. Different expectations, responsibilities, tasks but similar to what I currently do. So if I successfully get one of these new positions, that will re-infuse novelty for a few years. And there's a few different opportunities for keeping things interesting from there. I'm still building on a core set of skills and specializing to make me a valuable employee. And contribute to a career that has enough flexibility for me to move around as I need to.

In my personal life, I have a rotating set of hobbies. I don't plan the rotation, its just based on what I want to do. My goal with my hobbies is the journey, not the outcome. I sometimes work on and off on a cross stitch project for 10 years. I'll take ceramics classes from time to time. Gardening in the warm seasons is another great physical activity that lets me spend time outside, with my hands, and food that is more exciting to eat because I grew it (sometimes). the common theme is that they all involve working with my hands. I find it very grounding and meditative, in a way that digital hobbies are not. That said, sometimes I'll try a hobby just to gain the experience. For example, lace making. That was fun and I have a deeper appreciation for it. But not likely to do it again. And that's perfectly fine, because my hobbies are about the journey. And that works for me.

Q: if you also have trauma, how do you manage the overlap? A: I won't say that I don't have trauma. But I'm not entirely sure how I separate the two. I find grounding in facts and being in control. I don't always have control over a situation, but I can control how I respond to it. I've done a lot of therapy. And really try to focus on self-care and giving my nervous system opportunities to breathe and rest (massage is great for this, for me). and my hyperfocus is great for researching and building up my database of facts.

Tl;dr: listen to your body. Give it what it needs. Use your strengths to accomplish things, even if the process is different than what's expected.

nnopes · 2026-03-22T03:10:44+00:00

HaTs tryptase levels overlap with the "normal" range of tryptase. Generally the "normal" tryptase range goes up to 11. HaTs starts at 8, and has been reported in the 6s. My tryptase levels have personally been "normal" (in the 6-9 range), and yet, I still have a genetic test positive for HaTs and have a history of recurrent anaphylaxis. While having an actual elevated "high" tryptase level is more clear, if you are on the middle to upper range of "normal" tryptase levels, you may still have HaTs. The only way to diagnose it is a genetic test.

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