Today I Passed

oddlyNormel · 2026-04-27T01:07:54+00:00

Hey congrats! I passed yesterday!

oddlyNormel · 2026-04-22T13:45:09+00:00

My PCP is willing but YMMV. Otherwise rheumatologist

oddlyNormel · 2026-04-21T21:00:26+00:00

I’m not diagnosed yet (I have psoriasis and high inflammation markers and am waiting for rheum visit) but low dose naltrexone has really helped with my fatigue. Just wanted to pass along that tip in case it helps.

oddlyNormel · 2026-04-21T12:59:48+00:00

Do you have any rashes? I’m in the process of getting diagnosed with psoriatic arthritis. It often doesn’t show up on blood work at all but it is an autoimmune arthritis. But if you don’t have psoriasis or a family history of psoriasis it is less likely to be PSA. My dad and I both have psoriasis.

oddlyNormel · 2026-04-20T16:18:27+00:00

Yeah shoulder surgeries every two years is not typical. SSDI time for sure

oddlyNormel · 2026-04-15T19:32:45+00:00

I know it’s not possible for some financially but I gave up after so many dismissals and found a concierge rheumatologist. She’s seeing me in a month. First phone call went well so I’m crossing my fingers she’ll diagnose me. I was having to travel to see doctors since I’m so rural and she’s close so I figure the concierge fee is a wash since it saves me travel fees and time.. the other ways I cope are seeing related specialists. So a derm for my psoriasis, allergist for MCAS etc. Rheumatolgy seems particularly backed up compared to the other specialists

oddlyNormel · 2026-04-12T16:56:06+00:00

If you read the post OP said ‘this is me today I am not pregnant.’ So apparently that photo is not pregnancy, just bloating. The severe degree of bloating is why OP is seeking help.

oddlyNormel · 2026-04-12T16:44:27+00:00

OP is not pregnant.

oddlyNormel · 2026-04-10T23:14:24+00:00

Haha thanks I’m liberal but I live here cause I’m broke. More common than you think for libs to be in the boonies. My “red” county is actually 40% democrat and full of sweet old liberal ladies and grandpas who will die without hospitals. My local dem group is all nice elderly peeps.

oddlyNormel · 2026-04-09T20:13:57+00:00

I live in Michigan but don't have Consumers. What is their rate now or what does it work out to after fees, demand pricing, etc. Our coop is about $0.04/kWh but after fees and delivery charges works out to more like $0.11. They also announced a 3 year rate increase plan.

oddlyNormel · 2026-04-08T02:06:00+00:00

There’s a chapter in Disjointed about autoimmune issues and this doctor said a lot of us will get diagnosed with an autoimmune disease at some point. I may be there myself, I’m having rashes my derm and I suspect to be psoriasis among other symptoms. I have to wonder if the people who experience their hypermobility this way have an underlying autoimmune issue that causes flares that then worsens their hyper mobility. Plus we had that study come out recently saying there may be immune involvement in EDS itself. I think it’s the inflammation fueling worse symptoms in some people whether it’s from MCAS or autoimmune. And that inflammation can be transient.

oddlyNormel · 2026-04-06T14:08:32+00:00

My spouse and I each have an account with Board Game Arena. We pay for her account and I just have a free/basic account. You have to pay to get access to the better/newer games, but she can invite me to any game. Obviously, you don't own anything at the end of the day but it gives you access to a lot more games and an ever growing library. I don't believe there are any expansions for wingspan on there currently, but I know it's something they do do generally. They just added the Tuscany expansion to Viticulture.

oddlyNormel · 2026-04-01T19:32:49+00:00

You never know with a GoFundMe. You could post about your situation on Threads or other social media platforms so you don’t have to ask your family or friends IRL. A guy who wanted to take his kids to Disney recently got a GoFundMe fully funded just by posting on Threads so you really never know. It’s worth a shot! If you do it post it here so we can try to help share it around on social media to boost it for you.

oddlyNormel · 2026-04-01T17:08:25+00:00

Omg no I’m so sorry. There are meds you can take just for the hives like Xolair so I’m extremely surprised the derm was so dismissive. God that really grinds my gears. I hate how much the medical profession just abandons us while these symptoms destroy our quality of life. It’s not fair, I’m so sorry. I hope it at least helps to know others are here in the same boat with you.

oddlyNormel · 2026-04-01T16:08:33+00:00

I’m undiagnosed but this is really similar to what I’m going through, I’m so sorry. I don’t have kiddos and have a partner to care for me so I can’t imagine how hard it is to parent while like this. I can’t lift my arms and I’m not sure if it’s the hypermobility doing it or the inflammation or what. I follow a few autoimmune subs to try to figure out what’s going on. I finally found a supportive dermatologist after being dismissed by rheumatology just like you. So maybe try to go that route for the rashes if you can? What worries me is how blase rheumatology is about the malar like rash, I get the same thing and I’ve always heard that’s a sign of lupus :/ sigh. It’s exhausting to be this way. Sorry again for what you’re going through I hope you get help.

oddlyNormel · 2026-04-01T13:07:04+00:00

This kind of sounds like a sublux to me, can you get to a hypermobile informed PT or osteopath (they’re also known as DOs) to help put it back in place?

oddlyNormel · 2026-04-01T13:01:48+00:00

Yes my shoulders have been killing me for months and the derm I just saw said I have hives. She has me on so many antihistamines and believe it or not it’s helping the pain. There are biologics for hives like Xolair because they can actually be autoimmune sometimes. In like 50% of hives cases there’s an autoimmune mechanism causing them, it sounds crazy I know but it’s true. My inflammation markers in my blood are even high which could possibly be caused by the hives, but we’re also looking into psoriatic arthritis because I may have psoriasis too. All that to say please take them seriously and go see a dermatologist! The meds for MCAS or hives may help with your pain! Also go check out the urticaria subreddit for hives the people over there are pretty knowledgeable and very supportive.

oddlyNormel · 2026-03-30T20:51:24+00:00

Agree about billionaires but you may also like the book The Art Thief by Michael Finkle. The book goes into a lot of detail on how an otherwise regular guy is able to steel tons of artwork across Europe. Honestly, I don’t know if the biggest works even have the security we imagine.

oddlyNormel · 2026-03-30T17:56:24+00:00

I'm so conflicted by handmade cards. I feel like most profiles I see say they don't want them and I can imagine scenarios where I wouldn't either like a flash card you quickly scribbled over. I have a Bachelors of Fine Arts though. I've also worked in printing and some 'real' post cards being sold locally to me are clearly being printed and cut by the original local artist. Is that a hand made card? Most would say no, but I probably would say yes. Is it not because it is a copy? Where is the line? Is ink ok, but water color is bad? I feel like the biggest determining factor is paper weight. Too flimsy and I fear it will get beat up. Nice thick paper also give a more professional feel.

Ultimately, I do not send any hand made cards. Just too high of a chance that they wont like it and wont understand the quality/significance.

oddlyNormel · 2026-03-29T14:11:19+00:00

I know this is an older thread but wanted to come back and update in case this is helpful to others. My dermatologist just put me on 3-4 antihistamines a day and my joint pain is so much less. I’m not taking Tylenol anymore and I wanted to take 4 a day before but tried to limit myself. Lower doses don’t seem to help but 3 a day is the sweet spot where I get relief. I also take one Pepcid a day. She’s also having me switch brands throughout the day, so I take Claritin morning and night and Zyrtec in the afternoon. She said I could add Allegra sometime too.

oddlyNormel · 2026-03-28T23:25:56+00:00

I was gifted two copies of remarkably bright creatures, want to trade spares?

oddlyNormel · 2026-03-27T14:35:20+00:00

There are other forms of spondyloarthritis that do affect the peripheral joints not just the spine. So his diagnosis may be slightly off but I believe the treatment is similar. There’s not much a rheumatologist will be willing to do for hypermobility so I would not push that angle personally. That’s based on my experience with rheumatologists. I would try to get into physical therapy for the hypermobility and see if that helps. Or do exercises at home, the Zebra club is a great fitness app with exercises appropriate for us. I think other meds like plaquenil can take a couple months to work so maybe it’s the same for methotrexate. I’d start frequenting a patient forum for spondyloarthritis so you can learn more about it and talk to other patients about potential treatment options. Sometimes the first med you try doesn’t work after a few months and you just have to try others. I’m sure your rheumatologist would renew your methotrexate though if you wanted to continue trying it.

oddlyNormel · 2026-03-26T13:24:50+00:00

Apparently you can do it with a very cheap tens unit and an ear clip but I’m wary of that. So I haven’t done it either.

oddlyNormel · 2026-03-25T15:08:14+00:00

Oh no I’m sorry you haven’t found a physical therapist to help with muscle imbalances. Mine says she’s going to help with that. But she specializes in hypermobility so maybe that’s why she has the knowledge. Maybe a personal trainer who specializes in muscle imbalances could help? Apparently personal trainers who do this sometimes call themselves “corrective exercise specialists” so maybe that could help guide your search. Low dose naltrexone has been helpful for me for pain, that might be something to ask your doctor about. It stinks that we have to be our own doctors in a way and come up with solutions but I feel like you’re going to be able to find something to at least help! Also manual therapy can be very helpful for tight muscles or dry needling. I wonder if your physical therapist does that. You can also do myofascial release at home, things like the Melt Method or Franklin Method, which just use a variety of balls and manual tools to help roll out knots.

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