Category Archives: Journal

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A Diagnosis is Just a Label is Just a Tool

I’ve talked about labels before. Today I was thinking about how a diagnosis is just a medically recognized label.

Like any tool it can be used or not, and used well or poorly.

Another thing a diagnosis or label is, is language. It’s shorthand that allows those who understand it to skip past a lot of repetitive description. And like language it’s usage and meaning can and does change over time.

So, is your diagnosis limiting you? Or are you using it as a tool to liberate you and access support? The U.S. medical insurance system sucks, and working to improve it is definitely worthwhile. At the same time, understanding and figuring out how to work within the existing system might be necessary for many of us until change does happen.

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Link Tracking – Pain Treatment

I’m working on reconnecting with my body so that I can manage my pain appropriately and do my physical therapy exercises.

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Post Covid Update

I haven’t updated in a while, mostly because I’ve been focusing on taking care of myself and accepting help.

I’ve been doing EMDR and it’s been helping me reframe my memories. At first I was doing it to recover from the trauma of being hospitalized for bipolar disorder. We’ve started working on my childhood trauma since then. This morning I was thinking about how Penelope said that the biggest impact for kids was when their moms got more support. This has been true for us because I’m able to be more regulated and present for my child, which I’ve written about before is their primary need.

One of the things that has come out of my bipolar diagnosis is being forced to focus on taking better care of myself and asking for or accepting help. I’ve been learning that ignoring my needs, such as disassociating from my pain, is one of my maladaptive strategies I’ve brought from my childhood.

One of the first stories I reframed with EMDR was about my elementary school worms.

The school I went to had one of those red dirt tracks out in the field. Whenever it rain the track would be covered in worms. During PE if it wasn’t raining, we would be told to run the track. It took me forever because I was avoiding stepping on the worms. Eventually I’d get in trouble for being squeamish. I was the only one reacting that way, so I was the wimpy freak. Re-examining it I realized that I was the only one sensitive and caring enough to want to avoid killing the worms by stepping on them. And instead of my kindness being honored it was dismissed.

I didn’t find out about the trait of high sensitivity until my late 20s or early 30s, so while I was able to do some reframing on my own, I didn’t realize how many formative memories I had with negative interpretations. And it was only recently working with my chiropractor that I realized how disassociated I was from my body and its pain signals.

I wouldn’t say I feel lucky to have bipolar, but I do feel lucky to have such a large caring network of friends and family to support me while I rewire my brain.

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Here’s how stupid I can be

I was on the phone and this is what I wrote:

$1500*

On**

$281****

$proof of medical expenses*****

Lease agreement 958

1410******

-958

-500 something *******

———

The above was what I wrote while on the phone in Google Docs Monday afternoon, adding my notes Tuesday morning.

*I already forgot what this was

** And this

***This is where I said “That’s a negative number. Does he get the full amount with that?” The answer was “Yes” and I started laughing and crying at the same time in relief that I didn’t have to get any proof of medical expenses (raise your hand if you HATE PAPERWORK) and then thanking the person profusely.

****Current maximum monthly benefit for a single adult as of writing this

*****The number I thought I needed to figure out to maximize benefits and minimize paperwork

****** Current SSDI as of writing this

******* Utilities default exemption

Nope, don’t care enough to make this a nice clean click through, this is just a log. If you need CalFresh help – look here or do a web search.

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CalFresh

Info Dump mess – I want to come back and split this out to three different things:

  • CalFresh help since clearly there is a bunch of stuff available I found this time that I didn’t last time
  • Yelling at people who need it (I love Penelope Trunk, she yells at the world with her blog and you can pay her for coaching if you want her to yell at you privately, or take her classes if you want her to yell at others while you quietly think about how you needed to hear that – if you have a trauma background, you either are still avoiding being yelled at (read her blog so you can pretend she’s yelling at other people until you can’t resist commenting or taking a class or coaching session), you need to be yelled at but still hate it, or you recognize how helpful it is an love it.

    Oh, Penelope, that’s why we love you even if you think we hate being yelled at.
  • whatever other journal junk I need to clean out of this for those two

Stub

It took three tries requesting a call back on CalWin.

The most important thing I’ve learned recently is to say this:

I’m autistic and I KNOW my questions seem really stupid. I just need your help please.

I couldn’t say that without crying because it sucks to know how smart I CAN be and how stupid I WAS being because I couldn’t function at the moment they called and I knew I HAD to take the call.

I had to pull out a calculator and a blank document on my computer and do the math before they could answer my questions and then I cried again in relief that the solution was so easy.

The math:

If you are disabled and only get SSDI (see note below about cash help)

Then:

SSDI Amount
– Rent (LEASE amount)
– Utility exception of $500+
= Your income

If your income is 0 or negative, then you qualify for the maximum CalFresh benefit.

I had to ask the person three times and say that I was sending cash monthly and had a document in writing to the rental company promising to send the cash amount monthly before I believed them:

IF YOUR FAMILY IS GIVING YOU MONEY and you don’t live with them – THAT IS NOT UNEARNED INCOME.

Your rent is what your LEASE says the person ON THE LEASE owes, not how much of it you pay AFTER any help you receive. Yes, tell them about the help if you are doing the phone interview – so they can reassure you it doesn’t matter.

NO – DO NOT DO ANY MATH for them.

YOU DON’T KNOW THE EQUATIONS.

Or you got someone that sucked at asking questions. More likely, if you’re autistic, have an autistic relative, or think you’re smarter than the person you’re talking to – either you’re not or you’re a jerk.

Being stupid, admitting it and then thanking the person afterwards is better than being a jerk.

I thanked the person very specifically and heard a laugh of pleased surprise.

I know what that laugh sounds like, because I’ve heard it and I’ve made it enough times.

I said something along the lines that I recognized that the job sucked and didn’t pay enough and that they were doing it anyway to help people and to please keep doing it until they found a better way to help people.

Anxiety will lie to you that you can’t trust anyone. If you grew up with trauma, then you will have anxiety because that’s how you survived the trauma of your childhood.

The way you recover is that you figure out that humans are all trying the best they can to survive, and if they have anything left, then they start to thrive.

The way you thrive is to connect. And to connect you find people you want to listen to, or who want to listen to you.

You only need one mutual friend. You can be a friend to someone who needs you as a friend, and you can have friends that you need that don’t need you back. There are so many kinds of friends.

If you journal privately, you’re managing your anxiety.

If you write publicly, then you are sharing your truth just in case it helps ONE other person. So the things you’ve learned and experienced can help someone else the way you wish you had been helped.

Authors are telling the stories they need to tell. Popular authors are telling stories that many people wanted or needed to hear.

The internet has made it so we can tell our stories so many different ways so that any human can find the story they need.

I found the story of the worst of humanity and that I can see and understand the worst thing a human can do and forgive it – because that is how much they suffered and are suffering.

I understand why Nonviolent Communication is the name that author chose. And I understand why people call it NVC because they want to help people who need to learn to communicate, but are too far from pain and trauma to understand it, or too close to tolerate it.

I’m so glad that people exist that can’t even imagine existence being so painful that you don’t want to exist anymore. I was shocked to learn that my father-in-law is one of those people.

Either you understand suicidal ideation, or you don’t.

I don’t know if my husband does. I know I do and I feel sorrow because I think my child does too. I do know my father in law doesn’t. He was so confused when I asked him if he had ever WANTED to die. Like, couldn’t even imagine understanding why any human would want that level of confused.

These people are working for crap pay dealing with us at our worst because they either want to or are willing to help. If you think you’re smart, then recognize that they are the experts here and you need to trust them

You’re not being honest or helpful by “doing the math” for them, you’re giving them the wrong numbers.

Don’t bother trying to call and wait – they have a 500+ backlog as of today and every time I tried to call and wait I was 40+ in the queue and never got to a human before the call dropped after 2+ hours on hold.

Go on CalWin, request a call back on Monday, if you don’t get one or miss the call, request it again the following Monday.

Right now the state has been sending emergency aid and you might have more on your EBT card than you realize, just go try to use it or:

CalFresh EBT Balance and Login – California Food Stamps Help (icaliforniafoodstamps.com)

If you can’t find your card – report it as lost: EBT Card

People are trying to help. And the more ways we try to help, the more people we will help.

When I was functioning, I didn’t find this site, but I did look all this up on my own, so I knew my family member qualified for the maximum and was getting only 1/10th of that amount.

We got a person at some point, and they pointed us at the form to fill out and upload on CalWin so that I can talk on behalf of my family member without them having to be present to give permission each time. You can give any adult you trust permission to apply for you.

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3 choices

If you haven’t reduced down to three choices, you haven’t understood the question/task well enough to identify the first three choices.

Many of them come down to:

Unwilling

Unable (willing or not, this is more obvious though if willingness is there)

Doing – choosing

So the first step with any problem is to understand it well enough to figure out which of those three applies. And often once you do you can either:

Set a boundary (be assertive): I will not.

Set a boundary and ask for help: I am unable without support, and I am willing to explore options.

Confirm and agree: If I’m understanding, this is what you want me to do, and if that is correct, I am willing and believe I am able to do so.

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Scripts to Self Advocate with Doctors

  • You see WNL or your health care provider says results are “Within Normal Limits”
    • What demographic was used to establish the normal limits? Are you in that demographic? If no, then more information is needed.
    • If yes, what is the bell curve and where are you on it?

For example: I was WNL for thyroid hormone, and my IVF doctor put me one thyroid hormone replacement therapy because they had found an effect on fertility at “sub-clinical” (WNL but the low end of the bell curve) levels. It cleared up the fatigue I had developed in the prior year even though my thyroid had been checked when the fatigue flared up, so that “couldn’t” be the cause. Except it was.

  • “The test result is slightly abnormal, and it could be several things.”
    • Reply: Ok, so best case it’s nothing, what’s the worst case and the most common case – if those are two separate things? And what’s the next step to rule out (find the differential diagnosis) the worst case scenario?
  • You need an ESR test.
    • The ESR (erythrocyte sedimentation rate) test measures inflammation. Just refuse it and probably go find a new doctor. As far as I can tell ALL illness is caused by inflammation and there is no such thing as “all in your head” meaning not in your body. Your brain has incredible control over your body, so it might be causing the problems, but the ESR test won’t really help direct you.
  • You need a full body CAT scan.
    • I would refuse it, it’s just radiation and the doctor having no clue where to focus. Find someone with a clue. Unless you’re doing it for a research study, in which case, awesome, thank you and how do I sign up? 😀
  • When picking a surgeon, ask:
    • how many of that specific surgery they have done total and annually for the past 3-5 years.
    • what their worst outcomes have been. If they don’t have any, I wouldn’t trust them. Either they are hiding inexperience, or they haven’t done enough to come across a hard case.
    • what the worst possible outcome might be, say with a less experienced surgeon – (look up the answer either before or write it down to look up after so you can verify if they actually know and are willing to tell you the risks)

For example, I asked Dr. Zaghi of the Breathe Institute and his worst cases were some excessive bleeding and having to go back and redo the surgery. He also acknowledged that permanent nerve damage and pain was a possibility even though he’d never had that outcome before.

  • “medically unexplained but not dangerous”
    • This means that they don’t know the explanation, not that one doesn’t exist
    • how do they know it’s not dangerous if it’s unexplained?

This is a great one:

What They Say vs. What They Mean: How Doctors and Patients Miscommunicate | National Headache Foundation (headaches.org)

Assume every medical worker is Neurodivergent – bring a list of questions in order of highest to lowest urgency. Urgency should be based on how much/often it impacts your ability to perform activities of daily living.

References:

What Your Doctor Really Means When He Says . . . (menshealth.com)

How do doctors determine that symptoms are medically unexplained? (healthtap.com)

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Guide for online social communication

Post same amount as other people in a thread or post elsewhere (my blog is my default). Otherwise I’m probably over or under sharing and either way it confuses people more than it helps.

For social groups – don’t give information, share my experiences. If someone wants information they can ask or look around on my blog, otherwise they aren’t ready for it anyway.

Don’t post links unless someone asks for the same reasons as above, there is somewhere else for that.

Drive-by is not a method to live by. Do it well or not at all.

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Rage Inducing “Help”

I’ve been home since Jan. 3 and am finally starting to get a handle on the RAGE I felt when I got home after being “helped” – because what happened was not help cleaning up, it was taking away my agency and making decisions for me without asking me what my intentions were. And doing it in such a way that it could not be easily un-done. The road to hell is paved with good intentions, make sure you’re going the right way if you get to a one way door.

Don’t go through a one-way door unless you’re sure you never want to go back that way.

On the plus side hearing that my spouse understood it was wrong and stopped it from being worse than it was helped our relationship and to rebuild a bit of trust there.