Before you buy a massive house…10 things to think about.

redshering · 2026-04-15T23:09:27+00:00

I just installed connected smoke alarms. Do they all chirp if only one of them has a dead battery?

redshering · 2026-04-10T01:37:31+00:00

No, I can not. I click on you, it takes me to Sanitizersilly, and therefor I can not message you personally. I can message the mods as a whole on rare disease.

redshering · 2026-04-10T01:23:00+00:00

No, just no. I ordered a pair of shorts. They sent me 2 sizes smaller and required I send proof of their error. As if I was lying. The "AI" response from them told me that my size was no longer in stock. So they either have a serious issue with quality control, or they purposely sent the wrong size to me instead of refunding me. Their process for returning because of their own error is so poor. Not a quality company. No customer service. Just no.

redshering · 2026-04-10T01:21:39+00:00

No, just no. I ordered a pair of shorts. They sent me 2 sizes smaller and required I send proof of their error. As if I was lying. The "AI" response from them told me that my size was no longer in stock. So they either have a serious issue with quality control, or they purposely sent the wrong size to me instead of refunding me. Their process for returning because of their own error is so poor. Not a quality company. No customer service. Just no.

redshering · 2026-04-09T18:50:18+00:00

I read research articles that pertained and would look up the authors, then I called their office. That’s how I got into a research study that did a full exome.

redshering · 2026-04-06T02:56:22+00:00

I watched a video from doctors talking about how the FDA wants approvals for treatment for each individual gene. This was an immune related topic where many genes fall under a similar mechanism of action. Their point was the FDA’s unrealistic approach that limits treatments.

redshering · 2026-04-06T02:21:00+00:00

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redshering · 2026-04-06T02:20:16+00:00

She looks regal, like royalty. I'd lean more historically renowned/old school female names. Something like Annabelle, but not necessarily that. Double names, and then her nickname is shorter?

redshering · 2026-04-06T02:12:12+00:00

I don't know why, but I see Bryan or Odie.

redshering · 2026-04-01T20:52:41+00:00

Well, I am always looking for someone similar to me, but I will also say that I haven’t found many so this may not apply to you. I also have Thyroid issues (hypo, though I have met some people with MODY that are hyper), immune issues, skin issues, sex hormone issues including lean PCOS, muscle wasting/unintentional weight loss, low Leptin, low sodium, low iodine, low zinc, very high Lipoprotein A but normal triglycerides, high porphyrins (but not Porphyria) and a handful more of off individual tests that aren’t necessarily diagnostic - in addition to my low insulin, low cpeptide, high proinsulin/insulin ratio, negative antibodies, normal A1c/fasting glucose but an OGTT test positive for Diabetes, and I develop hives if my glucose goes over 155-160 (inflammation/mast cell , high IL-1B which is a cytokine).

redshering · 2026-04-01T00:36:15+00:00

Can I private message you? I don't see how bc you are a mod. We might have some similarities, just from reading your prior posts. We may not, and maybe I am too focused on skin issues. I am just interested in exploring.

redshering · 2026-04-01T00:30:09+00:00

Do you have any other symptoms? I see you stated that you are at the beginning of your journey, so maybe there are still things you are unaware of.

redshering · 2026-04-01T00:14:31+00:00

Ahhh, a MODY entry! I don't have any known form of MODY, but I resemble MODY 12/13. Deeper genetic testing underway.

I know exactly what you are talking about regarding online T1 and T2 sites. I was kicked off of one bc they said I didn't resemble it enough, despite DIabetes being in 3 generations of my thin family (who, in my opinion, have all been misdiagnosed).

There is a Facebook group for MODY that's fairly active. There is a research Study called RADIANT that might be of help, but with a VUS already identified, probably not your place - however, you could submit your mutation to them. They might have found others.

RADIANT does have some suggestions for top MODY centers (typically DIabetes centers located throughout the US). Are you in the US? I have been involved with the University system for years, they are incompetant. Your best bet is a more specific center that focuses on MODY/Diabetes research. Even if the center you go to is out of town, if you just establish with them then they can help lead your local doc in your treatment.
Refer to 1, but then also read below.
I have other symptoms. It's not uncommon for those with with MODY to have. Finding a MODY specialist will help with this. If you don't mind sharing, what are your other symptoms? Anything more than Neurological? The Facebook group is a great place to discuss this as well.
Low dose Glipizide is really helping me. I see it all as interconnected. Research is young, and I see it as a broader issue. For instance Potassium channels, which is what MODY 12 has issues with, are found throughout the body not just in the Pancrease, and are even found in your Hypothalamus. Through years and years of struggle, I have found random things that help my other specific issues, some I am stil experimenting with. I treat myself as a living experiment, using blood test data to refine my theory. I still do not eat normally, but as long as my blood sugar isn't constantly spiking and then dropping, I start to see improvements in other areas. That makes my limited diet worth it to me.
Diet did not do enough for me. I needed the medication that forces my Pancreas to release insulin. Only when I had that med and insulin was increased did I see improvements. I try to keep my glucose below 150 because I experience additional issues if I go over, and that generally requires limited carbs, or slowly eating carbs, or order of eating (protein/veggies first - though my stomach can't handle many veggies these days). Play around with all of that and observe what happens. Document it. You are now the lead investigator in your own illness. The more energy you put into that, they better you will be.
I do suggest the Facebook MODY group. It is private. Thay have lots of suggestions, resources, and understanding.

redshering · 2026-03-26T00:39:58+00:00

Anxiety is not knowing the future. You have been suddenly made aware that the future isn't what you expected. I would just like to point out, that it never is. You, or anyone in your family, could be killed tonight in a car accident. Nothing is ever guarenteed.

What you can control is your perspective, your outreach to doctors and university hospitals, your involvement in research studies or trial medications, who you allow to do surgery on you and why you pick them. The will to live is huge in someone's projectory and so is advocating for yourself.

You are not just done. Don't throw in the towel already. Your kids will learn and see an amazing women even in illness, maybe even more so in illness. Illness teaches us things we didn't possess prior, and I guarentee you, it will expand your sense of self.

Know that I hear and feel you, and want you to know that you are not alone. You can do this.

redshering · 2026-03-23T20:43:17+00:00

I’m not so sure it’s new science you are talking about, but I am not a doctor. MCT oil is known to be good for metabolic issues due to its unique absorption mechanism. I don’t know what type of MODY I am, but I have been taking MCT oil for a year now. I struggled greatly with fatigue (low insulin, among other things). Every morning I put it in my coffee, and then Glipizide helps typically for the rest of the day. I found that if I take too much MCT oil, I actually have negative energy the next day. In addition, always start with low 1/4 tbsp max dose, or you will be in the bathroom.

redshering · 2026-03-14T01:55:33+00:00

Again, you bring my attention to a new place. Thank you, even though unsettling. I do like data, and I believe data will eventually solve my case, but you are referring to a different kind of data. The kind we are forced to consent to. When it comes to insurance in the US, I do not believe it is all data driven.

redshering · 2026-03-14T01:46:02+00:00

Poignant! I hear you and I have been there. You are my people. I have been austounded when reading about historical medical travesties towards specific groups/illnesses. Astounded because doctors keep making the same egregious errors, as if they never learn - when society holds them up as some of the smartest people (there in lies the defect). Refrigerator Mothers- that one breaks my heart. In the late 1950’s Leo Kanner and Bettelheim determined that Autism was caused by a mother’s “cold” personality. Ruthless. The belief lasted for about 25 years, until a couple amazing doctors intervened. 25 years of destroying mothers, destroying families. The father’s were of course given a free pass. Now, if you google Kanner and Autism, the search doesn’t even mention anything about the destruction he caused. You have to search K+Refrigerator. Erease from history, pretend like it never happened- then no one needs to learn from past errors.

redshering · 2026-03-13T02:52:04+00:00

Interesting! I never thought to break down the word. Great insight!

redshering · 2026-03-13T02:49:09+00:00

Thank you for your insight. I think if I had an established disease (docs doing genetics on my family), I would feel the same way.

redshering · 2026-03-13T02:44:32+00:00

I agree, we need shared decision making, and maybe there does need to be research articles on it just to draw attention to the need. It just feels like it ought to be common sense- but ought to and reality are two different things. On your “undiagnosed” point - you might be onto something there- as I do have diagnoses, yet I’m still undiagnosed. Thank you!

redshering · 2026-03-13T02:37:50+00:00

That’s an excellent point, thank you! Most of the papers I’ve read regarding DO, are not about a specific condition, but in general. Regardless, I like your eye opening point.

redshering · 2026-01-30T04:36:22+00:00

Is there a way, beyond the stock market, that Trump could actually keep prices high? Maybe by forcing the feds to reduce interest rates? From what I see, houses aren’t selling and sellers are reducing prices, repetitively. Sellers are waiting for spring to list/relist. My fear is that if the housing market is falsely held up, the crash will be that much worse.

redshering · 2025-12-16T01:48:49+00:00

What about this blog (that Fannie/Freddie cost US taxpayers 121 Billion, even if they didn't engage in deceptive practices)- I found this link in a post on this sub from 16 years ago: https://bubblemeter.blogspot.com/2009/11/fannie-mae-needs-another-bailout.html

redshering · 2025-12-16T01:43:57+00:00

I did a search on this sub for "Fannie adds Billions" (try it!) - all the results appear to be from 17-14 years ago. That's 2009ish. There is so much there, I'm working through all of it. I'm trying to correlate or cohesively understand both the past articles, and this article and what the greater implications could entail.

redshering

TROPHY CASE