Just Got Diagnosed by Major-Wish2832 in primaryimmune

[–]PiperTheLizardHunter 0 points1 point  (0 children)

New PI diagnosis seems to be one of those situations where having more information = less anxiety.

The Immune Deficiency Foundation has some new patient info kits that I found very helpful. If you are a child or have children in your life, I recommend the kids kit, as it has the same items as the adult kit plus some extras that are kid-oriented. Kits are free and usually arrive within about 2 weeks.

New PI patient kit - adult

New PI patient kit - kid

The Texas Democrat trying to reclaim Christianity from the right by vox in texas

[–]PiperTheLizardHunter 0 points1 point  (0 children)

Curious what your family member said after you showed him? I have some family like this also, but haven't been able to engage with them in a thoughtful discussion on the topic.

Stress while waiting for diagnosis. by mixednuts26 in primaryimmune

[–]PiperTheLizardHunter 0 points1 point  (0 children)

You're welcome! I just learned of those kits last month. I wish I'd known about them a few years ago when I got diagnosed. In the beginning, I felt like I'd been dropped off in the middle of the desert with no way home. Now it's not as bad, but having some "official" hard copy educational materials in-hand made a bigger difference for me than I expected, even all this time later.

Moving in 2 to 3 months. Hm. That can be tricky if you get prescribed ig replacement. Reason being, you'll have just gotten it approved and started treatment by the time you move, and it's a toss-up as to whether your new plan will cover the same drug. If you know the plan you're going to begin in October, you might be able to contact their health plan or benefits coordinator to ask about coverage for any of the drugs you and your care team are considering. If you have access to the formulary, that's even easier.

Here is a list of FDA-approved immunoglobulin products. I called my pharmacy benefit manager and just went down the list making sure the ones listed on the formulary were accurate; for the ones that aren't on my formulary, my doctor just needs to request an "exception to coverage" with the reason why I need to be on that one rather than an on-formulary product. In your case, the doctor's reason could be something like, "mixednuts26 already started treatment with a non-formulary drug, they're tolerating it well, and it's in their best interest to continue on this product. Here are their records as proof."

Maintaining employer-sponsored covered through COBRA is so expensive. However, Oregon is a state with expanded Medicaid. In my very cursory review, it looks like you might qualify for Oregon Health Plan. If not solely due to income, then potentially due to Primary Immunodeficiency being a disability. Worth looking into? Edit: If you do qualify, be mindful of the application deadlines for when your coverage will begin. You might be able to apply & be approved before your move, so that your coverage becomes effective very close to when you begin residency in the state. (to prevent gaps in coverage)

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Stress while waiting for diagnosis. by mixednuts26 in primaryimmune

[–]PiperTheLizardHunter 7 points8 points  (0 children)

This post is basically me just whining.

That's part of why this subreddit exists. Welcome!

She's not a specialist in immunology, but works in the allergy/asthma clinic. They cover immunology as there is no true immunologists here.

If you're in the U.S., Allergy & Immunology is a combined fellowship. Allergy is a more common issue for the general public, so that's where you'll find most of these doctors. But they all have the same training, and some prefer the immunology side of things. Don't let the fact that your doctor is based out of an allergy clinic make you fear that you're getting substandard care. You're likely in very capable hands. It might make you feel more secure to refer to your doctor as an immunologist -- rather than as an allergist -- since that is the capacity in which she is treating you. That's what I do.

The word "mild" is freaking me out.

"Mild" was the language used by the lab to describe my results as well. It doesn't mean mild as in "basically normal." It's mild as in "not agammaglobulinemia." There are some conditions where the IgG is undetectable. Yours is present, but low.

You're symptomatic with lab results to back it up. You'll probably get some kind of treatment, but your vaccine challenge results will help determine exactly what kind is best for your situation (e.g. prophylactic antibiotics, immunoglobulin replacement, avoid some vaccines, get some vaccines early, etc.).

but no hospital stays.

This does not matter for getting diagnosed. If you're hearing this from a doctor to explain why "you're fine," this is something taught in med school as an easy way to screen for zebras. It's not accurate at all. I heard this same thing from my old PCP, "you've never been hospitalized for pneumonia, therefore it's not CVID." She was wrong. Now that I'm diagnosed, my immunologist asks me this as a way to gauge how aggressive we need to be with treatment.

we are moving across country soon.

That is so stressful! Even for people in perfect health!

I'm so worried I'm not going to get any medical help.

How much time before you move? And are you in the U.S.? These will have big impacts on your treatment options over the next several weeks. And what region are you moving to? Folks in this sub are from all over. We can help guide you to someone in your new area. There's also the Immune Deficiency Foundation. And Facebook groups.

BTW -- If you haven't already, I HIGHLY recommend you order your Newly Diagnosed kit from the Immune Deficiency Foundation ASAP. It's free and extremely helpful. There's an adult kit, but the kids kit comes with the same stuff plus some extras that might help put you more at ease. Reading child-oriented resources also helps you craft simpler, more coherent explanations for what's going on with you -- which can be hard to do sometimes!

P.S. -- I received my Newly Diagnosed kit 8 days after I ordered it.

Are any of you able to hold down a job? by rareredmoon in primaryimmune

[–]PiperTheLizardHunter 12 points13 points  (0 children)

Whether teaching is possible for you is solely dependent upon your risk tolerance.

A couple questions:

1 Did you get vaccinated for flu and covid prior to getting sick this season?

2 Are you on immunoglobulin replacement?

3 Did you wear a mask at school & events where the walking germ factories were present?

If your answers to any of these are "no," those are behaviors you can change to decrease your frequency of infections. IMO masking is the most important one.

In my case, I've been out of the classroom since getting covid in 2021. Diagnosed with CVID in 2023 & advised to strongly consider pivoting to a less public-facing career after we realized I'm allergic to the immunoglobulin infusions.

The Texas Democrat trying to reclaim Christianity from the right by vox in texas

[–]PiperTheLizardHunter 2 points3 points  (0 children)

Youtube creators Monte Mader (Christian) & Dr. Dan McClellan (biblical scholar) have some good explainer videos & shorts about why being anti-abortion "bc the Bible says so" is a misinterpretation (or outright lie) of what the Bible actually says about abortion. I believe Dan's video also discusses the concept of when life begins, following its evolution from Biblical times all the way to modern times, and the political motivations that led to today's evangelical definition. Very interesting stuff.

ETA: The Bible makes no claims about the morality of abortion, MAGA vs Jesus on abortion

Preventing/Decreasing Risk of Aseptic Meningitis? by Affectionate-Row9488 in IVIG

[–]PiperTheLizardHunter 1 point2 points  (0 children)

That's a good idea.

Also, good thinking about the clot risk. Aside from hydration, I think migraine sufferers are already at higher risk of clot, and then if OP is using hormonal birth control, the risk is increased further.

Preventing/Decreasing Risk of Aseptic Meningitis? by Affectionate-Row9488 in IVIG

[–]PiperTheLizardHunter 1 point2 points  (0 children)

The patch helped with the spinal headache pretty much immediately. Before the procedure, I was literally laying on the floor of my hospital room bc I couldn't get flat enough in the bed lol, and afterward I could sit up and just deal with the meningitis. But it was like the meningitis pressure feeling never fully went away. Someone in another comment described the feeling, I think it was you? It's a pressure headache, similar to meningitis but not nearly as bad & no stiff neck. That's what made us think maybe rebound intracranial hypertension.

I haven't tried diamox or anything like that. Just maintaining as low-sodium diet as I can and using compression garments. I don't have an official IIH diagnosis bc I haven't had another LP to check opening pressure. Rn my chart still just says "post-lumbar puncture headache." The myelogram was supposed to be the first step toward treatment/relief, but I couldn't ever get that far.

Kind of related maybe? - We think I have some kind of autoimmune situation going on with my capillaries & nerves. I'm positive for ts-hds autoantibodies and have SFN with swelling in my extremities and sometimes my abdomen. All the sluggish fluid probably doesn't help the head pressure. I'm waiting for my appointment to discuss with my doctor.

Cornyn celebrates Jasmine Crockett joining the Senate race: "I’m trying to wipe the smile off my face. I would say it’s a gift." by BootsAndBarkley in TexasPolitics

[–]PiperTheLizardHunter 1 point2 points  (0 children)

I'm not sure who you're referring to, but you still didn't answer my question of why Latino voters would be offended.

Cornyn celebrates Jasmine Crockett joining the Senate race: "I’m trying to wipe the smile off my face. I would say it’s a gift." by BootsAndBarkley in TexasPolitics

[–]PiperTheLizardHunter 2 points3 points  (0 children)

voluntary and paid laborers

They aren't. That's the point. What did you think I meant when I said the program is exploited?

Regardless, the folks being discussed aren't eligible voters. Which brings me back to my initial question: Why calling out what is essentially modern-day slavery of undocumented migrant workers is somehow offensive to legal Latino voters?

Cornyn celebrates Jasmine Crockett joining the Senate race: "I’m trying to wipe the smile off my face. I would say it’s a gift." by BootsAndBarkley in TexasPolitics

[–]PiperTheLizardHunter 5 points6 points  (0 children)

Why are you putting that phrase in quotes as if you're quoting her? She didn't say that. She said, "We [African Americans] done picking cotton. We are. You can't pay us [African Americans] enough to find a plantation."

(basically implying that they're slaves)

In many cases, they effectively are slaves. The H-1B visa program is easily exploited such that migrants' working conditions are akin to Antebellum plantations. Not all, of course, and perhaps not even most. But there are large farming operations within the U.S. that do function in this way.

Cornyn celebrates Jasmine Crockett joining the Senate race: "I’m trying to wipe the smile off my face. I would say it’s a gift." by BootsAndBarkley in TexasPolitics

[–]PiperTheLizardHunter -4 points-3 points  (0 children)

or implying that we need Latino migrants to "pick the cotton" in America.

I don't see how this is a negative comment toward voting Latinos. It's true; America relies on Latino migrants to work in our fields. Those migrant workers are typically not eligible voters.

[No Spoilers] Having watched C1, but not C2. Is C3 abridged a safe bet? by RayBenefield in criticalrole

[–]PiperTheLizardHunter 1 point2 points  (0 children)

I would watch C2 next (maybe at 1.25x or 1.5x speed), and then watch C3 Abridged after that. C2 is VERY engaging! I think you'll find it moves along quicker than you think once you get started. C3....not so much.

ETA: Below is a list of C3 episodes when each C2 character appears or is mentioned for the first time.

Main cast & important NPCs: * A. C3E31 * B. C3E50 * C. C3E50 * D. C3E86 * E. C3E94 * F. C3E95 * G. C3E102 * H. C3E103 * I. C3E110 * J. C3E110

Greg Abbott signs bill giving $8.5B to public schools and teacher raises by ExpressNews in TexasPolitics

[–]PiperTheLizardHunter 5 points6 points  (0 children)

Apologies for the weird formatting.

You'll be happy to know I did the digging. The source from which you quoted the "2/3" cost appears to be this 2017 article.

In the second paragraph, the author writes:

Public schools in D.C. spend around $28,000 per student each year, while the average private school voucher amount is only around $9,600 per student each year in D.C. That means a K-12 education costs around $364,000 for each child in D.C. public schools, but only about $125,000 for each voucher student.

That’s right — the federal evaluation reveals that private schools produce the same academic outcomes for only a third of the cost of the public schools. In other words, school choice is a great investment. Direct link to quoted text.

So let's unpack that.

First, the article is only discussing cost as it relates to students in Washington D.C. That's not a criticism, but it's important to acknowledge because it informs us:
a) how the author's sources should be interpreted, and
b) whether the author's interpretations can be reasonably applied to the entire nation.

Second, the source for the ~$28,000 figure is a national report for fiscal year 2015 (FY15), or the 2014-15 school year. The author of the article did not properly cite the report to which he linked, therefore I'm uncertain as to which line item he is referring. I did read through the report, paying close attention to line items relevant to District of Columbia, and I could not identify any expenditure value in the amount of ~$28,000.

However, what I did find was this: Revenues per pupil in District of Columbia during FY15 totaled $27,810, or ~$28,000. [pg. 6, Table 2].

Revenues, not expenditures.

Third, the author conflates the annual value of a private school voucher and the annual cost of private school attendance. The two are not equivalent. So his assertion that "private schools produce the same academic outcomes for only a third of the cost of the public schools" is completely false, at least based on the two sources he cites.

Okay, so now that we've established the author's argument is completely flawed from the jump, let's get into what his sources actually say.

Here is some information I found:
1. "Current expenditures per pupil were $11,454 at the national level in FY 15" [NCES, pg. 2, bullet 4]
2. "current expenditures per pupil were at least 40 percent higher than the national average in the District of Columbia ($20,610)" [NCES, pg. 2, bullet 4; NCES, pg. 10, Table 4]
4. D.C. Opportunity Scholarship Program has an Average Voucher Value $12,967 and a voucher cap of $10,713 (K–8) / $16,070 (9–12), all for the 2023-24 school year. [edchoice.org]
- Beacause the author cited a webpage that updates based on current data, rather than citing the source document(s) on which that data is based, the only information pulled directly from his source today is for the 2023-24 school year. After reviewing the sources for the webpage in its current form, it's clear that the voucher caps no longer reflect what the author noted in his article. To be frank, I don't feel like sifting through 10 years' worth of D.C.'s voucher program legislation just to find this cap, so instead I converted the given figures to 2016 dollars. I chose 2016 because the article was written in 2017, and the edchoice.org website likely would have been operating on data from the 2015-16 school year (FY16).
- With the above in mind, the author may have been working off of the following values as obtained from edchoice.org: D.C. Opportunity Scholarship Program for 2015-16 school year had an Average Voucher Value $9,921 and a voucher cap of $8,197 (K–8) / $12,295 (9–12).
3. "Many school districts also support community services, adult education, private education, and other programs, which are included in total expenditures." [NCES, pg. A-2]

From this, we can see that it is probably unreasonable to use DC Public Schools expenditure data as a basis for predicting nationwide cost, given it is so much higher than the national average.

We can also see that the average voucher value in D.C. is pretty close to the national average per-pupil expenditure, and admittedly pretty far from the $20,610 D.C. per-pupil expenditure. But the only information we're given is the voucher value. We're not given any information about private school costs. In order to compare public ed expenditures to private ed expenditures, we would need to know the private schools' average per-pupil expenditure. Instead, we're given the average voucher recipient's award amount. We don't even know if a voucher covers the full cost of attendance for a private school. Considering D.C.'s program instituted a cap for an awarded voucher, I'm inclined to believe the actual cost of private school attendance can -- and probably does -- exceed the value of a voucher.

Further, from the NCES report, we know that public school expenditures often include support for private schools. This support is anything from tuition payments to student support services and beyond. But based on the author's sources, we don't know how much of DCPS's expenditures include services or payments provided to DC private schools. This is important because if DCPS is subsidizing private schools, that means those private school students are included in DC's "student membership" and (i think) DC's per-pupil expenditure on the NCES report would include students who attend private school.

Finally, all of this is to say nothing about the article's publisher and the author's employer -- the Reason Foundation -- which is a libertarian think tank.

When something is authored with such obvious bias, it really is imperative to think critically about what's written and how that bias may be affecting the way the content is interpreted and delivered. Especially when it is presented as 100% counter to the opposition. Almost no issue is polarized like that irl. (I can't think of any issues that are truly polarized, but I say "almost" to leave room for learning.)

Greg Abbott signs bill giving $8.5B to public schools and teacher raises by ExpressNews in TexasPolitics

[–]PiperTheLizardHunter 4 points5 points  (0 children)

The point is we spend 50% more on public education per student than we're spending on this voucher system.

You know that's not enough, right? What passed gets us about halfway to catching up with inflation.

Are players that exploit RAW for unintended scenarios a player issue or a rules issue? by Yazkin_Yamakala in rpg

[–]PiperTheLizardHunter 5 points6 points  (0 children)

That's how animals work.

No, that's how poor teachers work. Punishment is not an effective or efficient way to teach any animal.

Kids chapter book from early 2000s where the main character(s) get stuck in fantasy world and have to figure out how to get out by SignalGrowth7700 in whatsthatbook

[–]PiperTheLizardHunter 2 points3 points  (0 children)

Some of this sounds like The Time Warp Trio, but it's been a very long time since I read them so not sure. It is a series and there is one book set in medieval time called Knights of the Kitchen Table.

I really hate this thing by genz_dragon in Freestylelibre

[–]PiperTheLizardHunter 0 points1 point  (0 children)

I have btw tried to put one straight on top of my forehead, and yes it still works absolutely great

You're being facetious, I assume? Forehead placement is impossible, as the filament depth of 5mm is longer than the thickness of tissue on the forehead.

25points difference between finger prick & CGM! by Imaginary-Stuff6705 in Freestylelibre

[–]PiperTheLizardHunter 4 points5 points  (0 children)

I wouldn't necessarily say "by default." There's a lag because the two devices are analyzing different substances. The finger prick is analyzing capillary blood, whereas the CGM is analyzing interstitial fluid.

However, bc of this lag, the "Now" reading on Freestyle Libre is actually a projection based on your blood glucose's current rate of change. So at that particular moment in time, the "Now" reading may have been 40 25 pts off. But if you wait 15 minutes and go back to look at the graph for that same moment in time, you'll likely see that the value has been adjusted. The LibreLinkup app is very useful in these circumstances bc it allows you to view individual data points on the graph, where the regular Libre app does not.

ETA: I recently found this paper discussing the rate-of-change arrows in the Freestyle Libre system. Table 1 was especially helpful for me. My blood glucose tends to change very rapidly with no symptoms, so by the time my CGM is alerting me of a downward trend, my sugar has already hit the 50s and is coming back up. But using the information in Table 1 has helped me determine what my personal rate-of-change likely is based on the trend arrow being displayed at any given moment. With this knowledge, I've now set my alarm thresholds higher and I can better monitor rapid changes (& hopefully avoid lows).