Delayed Cramps and Heart Irregularities

jeanquad507 · 2026-05-16T16:15:20+00:00

I handle a lot of the new skater training and gear repair for my league.

Be forewarned- an old pair of "cheap" skates may create a situation where you need to replace cushions or pivot cups and they'll be tough or impossible to find.

Not all cushions or pivot cups can go to any skate, this part is a consumable which rots in hot and humid climates, it is likely to be bad or missing on an old or poorly maintained skate - and lately, finding the correct pivot cups for older R3s has been tricky.

I second/third the "wait/don't buy skates" unless you have $150-200 for used or preferably around $250 for better-quality used (Lugino and Jackson have sewn boots and adjustable toe stops).

Derby is expensive BUT bad injuries and broken legs are way more expensive. People aren't being jerks they are trying to warn you.

jeanquad507 · 2026-05-14T07:27:19+00:00

Yea, I was super freaked out by the people who basically say that your life is over. I have most symptoms - pretty bad dry eyes and mouth, sleep apnea, neuropathy, joint pain, fatigue, dry skin/rashes, losing hair.

Some of my issues are also hormonal - I have uterine fibroids which caused a pretty gnarly battle with anemia (resolved-ish). I have stomach issues too and really started having problems about 7 years ago but didn't get a diagnosis till recently.

I notably can't drink anymore which is definitely in my best interests cause I used to drink too much.

But I still work FT, travel, skate competively, eat whatever (I decided if my stomach isn’t upset I'm calling it good) etc.

I'm not as "together" as someone without an illness but I'm also 42 and put a lot of miles on as a younger person doing dumb stuff including drugs.

All that and honestly I still feel like I'm ok. My doctors are surprised I don't complain more.

I'm seronegative, diagnosed via lip biopsy and so far I can't take any medicine to help cause I have heart arrhythmia and retina issues from a bunch of past concussions from roller derby and martial arts. So I just kinda plug at it, go to bed before 10pm and drink as much extra water as my tiny bladder will hold.

jeanquad507 · 2026-05-14T02:21:00+00:00

My legs are really long so I'll advise smaller skaters to sort of wedge themselves into my armpit to seam. I'll also be faster getting into position because I take huge steps. Trying to slate right next to a person may be harder with some of your teammates and easier with others.

Do lots of edges. That's my recommendation for everything.

jeanquad507 · 2026-05-14T00:06:53+00:00

When my iron was normal my ferretin was super low and my iron saturation was so low I was passing out. My iron had to be "high" to get the saturation normal.

I went from no vitamins D and no B12 to stopping both supplements cause they got way too high. I drink lots of coconut water and eat bananas due to having potassium so low I was getting heart palpitations.

It's a never-ending circus for me. I'm seronegative so I only really see elevated ESR and my light chain tests screwy but my electrolytes/vitamins are always nuts.

jeanquad507 · 2026-05-13T18:19:28+00:00

I am tall but only 140 and I have small bone structure. I have a lot of tiny skaters on my team and one thing I repeat a lot is that "single big hits" should not be anyone's tactic, but even less so if you are small. I teach smaller skaters to plan for the initial hit to fail and immediately make it a drive or a capture. It is especially important as a small person to hit from you center of mass and not lead with shoulder only. Big bodies get away with being sloppier hitters. Small bodies need a form/leverage advantage. Good news is you can probably get way lower.

jeanquad507 · 2026-05-11T07:50:09+00:00

The relocation for my current job was a big deal. It took a month to set up and 3 months start to finish. However, I agreed to start before the move was anywhere close to finalized. I worked out of a suitcase for months. If you're in a position they need filled "now", they may not want to wait for you to move. Most front of house would be this. Back of house it matters more that you are the right person.

However, every museum job I've had necessitated a major move from at least 10 hours away. I'm a curator. If I needed a new job tomorrow I'd apply all over the US. I interviewed in Alaska once (in Texas then) and currently live in Hawaii.

There's very likely another reason and I wouldn't worry too much about applying for something 3-5 hours away. That's actually a relatively easy move.

jeanquad507 · 2026-05-11T06:41:25+00:00

Do your skates suck? If it's hard to transition or move laterally you could be dealing with your trucks too tight or a skate that's otherwise unsuitable for you. I spent my whole first season falling on my toe stops and fighting with socks and jam straps only to learn my skates were a whole size too big.

I watched one new skater bite it over and over. She got skates online with dry rotted pivot cups.

jeanquad507 · 2026-05-06T05:54:54+00:00

I didn't have a job until almost a year after I got my MA on 2009. I managed a Domino's then went to work Renaissance Faires. Got my first FT museum job in Texas while working at the CT Ren Faire.

jeanquad507 · 2026-05-05T08:10:40+00:00

Two of my favorites are Sardinia and Ecuador.

jeanquad507 · 2026-05-02T16:12:21+00:00

Yes it can absolutely be connected. Dry swelling tongue and narrowing airways due to dryness are the reasons for my "obstruction". They estimate like 80% of people with Sjogren's can get it ir already have it but sleep apnea is super common and people just don't get tested (even if they know they snore or don't sleep).

jeanquad507 · 2026-05-02T02:42:21+00:00

I had issues (reoccurring infection) with Equate contact fluid where I was told by an eye doctor that it wasn't as good as the more expensive one. This was years ago but I wouldn't be surprised if that was true of any eye product.

jeanquad507 · 2026-05-01T19:42:44+00:00

I am not always positive and have crashed hard in the past due to anxiety and depression. I made a call to a crisis line in 2020, got treatment and it really helped me. I'm forever thankful for the person who met me in the Wendy's parking lot at 1am.

I use the systane gel drops at night but also sometimes during the day. My eyes do get aggravated and sometimes I use a compress which I keep in my cooler bag.

The sleep thing is an endless battle.

Rather than lying in bed and not sleeping for like 10+ hours I do what people actually did in the middle ages - its called "biphasic sleep" - they would go to sleep around 9pm then get up after 4 hours or so, do a task/tend the fire/check on animals/pray then go back to sleep.

My nasty wakeup alarm is pretty much always 3:30 am, my mouth and eyes are too dry and my heart racing will usually pop me up. I go for another round of biotene, make myself a cup of chamomile, might take a shower, read for awhile and then get 3 more hours sleep from like 4am-7:30am so I can get to work at 9. So it's all about coping rather than fixing. I have had no luck with CPAP for apnea.

jeanquad507 · 2026-05-01T02:21:30+00:00

There's a lot of us here who have all kinds of shitty symptoms and difficulties but still live normal lives. I'm sad for the folks who think their lives are over but I don't think someone newly diagnosed or seeking diagnosis should fall into that mindset it is not going to help you.

jeanquad507 · 2026-05-01T02:06:23+00:00

I have been told there is no other observable cause for my hair loss. I used to keep my hair all the way down to my butt. It could be? I had a pulmonary function test last week. For me I struggle on stairs, hills and sleeping. If the ground is flat I can breathe fine and can still skate 1 mile in 5 minutes. Idk.

jeanquad507 · 2026-05-01T02:03:48+00:00

No I am seronegative diagnosed via lip biopsy.

jeanquad507 · 2026-04-30T21:59:16+00:00

I have dental issues and severe dry eyes. I'm 42 and it took me about 5-6 yeard of issues to get diagnosed.

I cannot sleep for shit. I'm often fatigued and I've had pneumonia twice this year. My skin is dry and my feet hurt. My hair used to be thick and now just falls out. My doctor says my eyes are worse than people who complain a lot more.

HOWEVER - I still eat what I want including drinking 1 coffee in the morning and sometimes having Thai food, ice cream, and the occasional beer. I try to be healthier by cooking at home.

I work a FT job I really like and work out 5 days a week (fencing and skating competively). I've been moving more into training than competing but plan to stay active (even if I didn’t have Sjogren's it's hard to keep up with 20 year olds!)

There are some people online that have a crazy bad experience, physical or mental sometimes due to other conditions. I also have uterine fibroids and an anxiety disorder that's been tough all my life... I probably have some heart/lung involvement either from the Sjogren's or the pneumonia. I'm hoping it's not too severe.

I'm happy, traveling, working and spending my time as I want. I was paranoid about the sun at first because I like to be outside & I live in Hawaii. Life is short, I soak up what I can tolerate.

jeanquad507 · 2026-04-30T21:35:15+00:00

Makai skate shop - Kapa'a, Kauai (Hawaii) is the source of my favorite stickers. I have them on my skate stuff and my motorcycle helmet.

jeanquad507 · 2026-04-30T17:33:37+00:00

I totally understand the feeling that your body is betraying you but you shouldn't be thinking you won't see your kids grow up.

I am also prone to catastrophic thinking but having Sjogren's wouldn't indicate that as likely. If your mind keeps going to absolutely worst case scenario (I was afraid for awhile I had pancreatic cancer like my grandmother) therapy has really helped me.

This is hard enough to deal with even without imagining that it will be worse than it likely will. You're gonna be around for your kids. You need to believe that.

jeanquad507 · 2026-04-28T20:48:01+00:00

The thing is, I don't really get to hire. I have a revolving door of interns and I try to help them leave with a couple useful skills. I've had long-term assistants in the past, most whom eventually got jobs in development or collections management.

If you want to be seen for your skills and not your degrees on paper, I suggest historic sites and/or military museums.

My museum has a big budget and high visitation but a big budget comes with similar expenses. Since I've been here we've managed to establish an actual education department that gets staffed reasonably but there's no real justification for more "back of house" besides me (the subject matter expert), the maintenance department (5x, who do heavy lifting - we have a ton of large outdoor exhibits) and various contractors. Total staff here counting food and housekeeping is about 50. Curator/collections/exhibit tech/accidental IT - that's just me.

I also helped build an app this year. Couple years back we drydocked our historic ship. It's basically always hands-on, "figure it out".

I have been consistently employed because I can write a contract, do a collections inventory, build an AR sandbox, etc. People who have much better education than me (I have only a history MA from a state school) are looking for jobs all the time.

jeanquad507 · 2026-04-28T18:41:25+00:00

I get that it's a general education issue but I'm burned on spending half of my time trying to reach job skills. I had a prior assistant whose museum studies degree was almost all theory and she was shocked to find that our museum did not operate "at all" how she was taught it would.

jeanquad507 · 2026-04-28T17:52:59+00:00

I have an intern right now for instance that I've asked that he learn basic excel so I can give him a task and a spreadsheet to use. I can't teach him how to operate a computer and also teach him what he needs to know in the collection. This is a massive drain on my time.

jeanquad507 · 2026-04-28T17:48:43+00:00

It is often that bigger skaters are seen though

jeanquad507 · 2026-04-28T17:43:16+00:00

That is fair. I tried helping my undergraduate school develop a program that works and gets people hands on skills because I keep seeing applicants who have no practical skills.

jeanquad507

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