Women and Weight - the Catch-22 of GLP-1's and Women's Healthcare

 We all know the dialog.  We could write it ourselves.

a woman, any age at all, goes to the doctor, with a compaint of __________ (fill in the blank).

• fatigue
• foot pain
• distrupted sleep
• painful periods
• back pain
• breast pain
• feeling bloated
• constipation
• muscle pain
• constant thirst
• toe fungus
• brittle nails
• irregular periods
• skin changes
• difficulty breathing
• confusion
• forgetfulness
• eyesight changes

What EVER it is, chances are, that doctor will say...

You need to lose weight.

every. single. time.  

If you insist, and push for actual tests, for a suggested direction for further information, you may be given a nutrition guide to teach you how to eat more healthily, be told to drink more water, and get more exercise. You'll be told to get more sleep, and try to find ways to destress.

Repeat this process hundreds of time over the course of a normal lifetime.  

You will try exercise routines.  You will cut out soda.  You will learn to track calories.  You will learn about pros and cons of protein, carbs, fiber, cholesterol.  You will pray to the Greek God of Yogurt, with high water content, protein, and probiotics!  

By the time you hit 40, you could probably qualify as a nutritionist at most hospitals.

Then, you hit 45 or so, and perimenopause.  You go to the doctor, repeat your complaints, are told, that's menopause.  This is all normal. Get used to it.  You'd feel better if you lost weight.

After years of this, you reach a point where someone, some doctor or physician's assistant, or nurse practitioner (ok let's be real, it's a nurse practitioner almost every time, cuz docs mostly don't care) says, have you ever considered a GLP-1 or other weight loss drug?

So, you try it out. They give you a free sample, and within DAYS of starting it, in combination with all of the other ways you have learned to control your calorie intake, and increase your water intake, and increase your activity....suddenly you lose weight.  all those things you've been told to do for years, that only served to slow the constant weight gain, are finally WORKING.  if you eat responsibly, drink enough water, and move regularly, the weight starts to come off!  for the first time in sometimes YEARS, doing the right things actually works to lower your weight, instead of just to slow the gain!

It's...life-altering!  There's hope!  You might finally feel like a human being again!  It might be possible to sit on the floor to play a boardgame!  Maybe you could go hiking!  Oh my god, you could <gasp> go DANCING!  You might be able to look at photos of yourself again!  to want to dress up, or wear make-up! You might, maybe, be able to feel desirable again!

and you call insurance to see what it will cost.

Denied.  Not covered.  $1200 a month.  but, hey! you can get a manufacturer's coupon, and only pay $500 a month!

So you call, and ask, can I get a prior authorization?  

No. It's categorized as a weight loss drug, and those are not covered by your policy.  

Wait. So, let me get this straight.  My whole, entire life I have been told over and over again, that whatever is wrong with me, if I lost weight, it would be better.  That the key to health and happiness was being slender.  That every 5 extra pounds I carry increases my risk of serious chronic illnesses and heart problems, of high blood pressure, and sleep apnea.  Of heart attack, and death.  I've even heard it claimed that being 30 or more lbs overweight in your 50s increases your chances of developing dementia.

My. Entire. Life. The healthcare industry has preached weightloss as the panacea of all illness.  

And now, there is a medicine that will help me acheive that weight loss, but...you won't COVER IT???

If you ever doubted that the American healthcare industry is controlled by bloated, self-absorbed, greedy, soulless bastards, please doubt no more.

FREE LUIGI!

<disclaimer - there is a good deal of whinging my my blog posts lately.  I'm very...very...aware, that i am incredibly fortunate in my health.  I don't have any chronic illnesses, or dysfunctions, or disabilties.  I'm overall a healthy, capable woman.  I do not now nor have I ever taken that for granted.  I know many many people who would be thrilled to trade places with me.  However, to paraphrase my sister who has been disabled for 40 years, it's not a competition: pain is pain.  Yours is just as valid as anyone's.  You don't have to apologize to me for hating yours, just because I have felt it longer or harder. I just wanted to address the fact that I'm fortunate in many ways, and recognize my privilege>

PART 2: Sick of hearing about PeriMenopause?

This is a continuation of a post on PeriMenopause and the failure of the medical establishment to handle women's health concerns effectively. You can find Part 1 here.

A few months ago I went to a new menopause doctor at University Hospitals in Cleveland - an hour drive away from home, but the whole department came very well recommended.  She was great, but I was fully expecting to have to fight for decent treatment.  I was now bleeding constantly - the kind of bleeding and debilitating cramping I hadn't had in 20 years.  She ordered tests, increased my progesterone.  During my initial visit, i had a million questions - half truths and hints shared in social media posts - what is truth? what do the studies say? what do each of the hormones do?  How does testosterone tie in?  Once she understood that I was overducated and had a solid understanding of medical terminology (thank you classics education and a child with multiple chronic illnesses) she skipped explaining everything at a 5th grade level and started answering my questions directly.

I was >>definitely<< seeing benefits from HRT.  I was sleeping better, my hair wasn't falling out anymore (oh yeah, another symptom no one told me about), my nails were no longer brittle  (yeah another one), and....i could actually move.  really move.  it no longer hurt to stand up.  it no longer hurt just to get out of bed in the morning.  i didn't feel like i needed a nap every afternoon.  

then one week my husband and i went out of town, and i broke my routine.  I forgot to bring my hormone patches with me, and didn't even think about it.  i missed 3 days.  

and the pain returned.  it was like having your lifeline snatched away.  it HURT.   

I was shocked.  I'd LIVED like this, for years.  every day, struggling to accomplish the basics because just getting out of bed was a struggle.  and not a single person could tell me why i hurt so much.  

But...drawback...on HRT i was bleeding. a lot.  from December 9 until early March, i was bleeding every day except for about 12 days in the middle, sometimes soaking through multiple pads in a single day.  i had to go buy some, because I didn't even keep them around anymore, and had been stealing my 19 year old daughter's.  

So, new doctor.  a great conversation where she answered question, and OOPS we stumbled across another diagnosis.  Turns out I've had something called HSDD, or Hypoactive Sexual Desire Disorder.  She said it in passing while answering my questions, and explaining the purpose of testosterone treatment, and i said "oh, i've had that for 20 years."  

She stopped, looked at me, and said, "excuse me, what?"  .

I said, "My libido decamped at least 15 years ago, and just never came back.  I've given up on ever seeing it again."  

After a pause of several seconds, where she just looked at me, she rapid fire asked me a series of very specific and direct questions, which i answered, and she sat and looked at me, dumbfounded.  "Did you talk to your doctors at the time?" she asked.  

"Well, yes, of course.  There was some super expensive supplement that might help, but it wasn't covered by insurance, studies were inconclusive, and it cost like $800 a month.  never gonna happen.  <shrug>. It never came up again." 

That same medicine is STILL the only approved treatment, and it is not approved for treatment of post-menopausal women. Only pre-menopausal women.  And it's not, in fact a supplement as my OB/Gyn had told me all those years ago.  Instead, it's similar to an SSRI, but functions differently.   In 15 or so years, that's the only accepted treatment.  Well, you can also microdose testosterone cream, but it isn't indicated for HSDD, and up until recently it had a block box warning for use in women, and there are no dosing options for women so you have to purchase the male dose, and guess....  More than a decade later, and there is still just this same medicine...and it is still not covered by most insurances.  

Because, why would women need to >want< to have sex?  There's no real reason to study, or treat loss of libido for women.  Amiright, ladies? <wink>

She wrote me a scrip for this medicine, and I started the Insurance Dance.  Of course, it was denied - not covered. $800ish a month.  Tried the manufactuer's coupons - $400ish a month.  tried a discount program through phil.rx - $147/90 days.  ok...that i can probably do.  It took about 3 weeks to get, and they said it can take 4 to 6 weeks of daily doses to show effectiveness. 

I've been on it for about 3 months now.  It definitely works, but it's subtle.  But..the most surprising thing i've noticed?  I'm a voracious reader - I love a good story, with great character development.  However...spicy content just irritates me. I skip it.  books that are heavy on the spice, i give up on.  i want the STORY...not sex!

For the first time in many many years, the spicy scene in a book I read wasn't an irritation. it was...fun.  startling.  enjoyable. 

huh.  didn't know i was broken until i was fixed.

but I digress.  Menopause.  

I swear, I used to be a straightforward but exceedingly polite patient.  I really was.  I'm not anymore.  not at all.  I can't afford to be.  None of us can.  

The tests my new doctor ordered came back with abnormal thickening of the endometrium.  My doctor ordered an endometrial biopsy.

I said no.  

Via the incredibly non-user-friendly patient portal (you all know exactly what i mean) the nurse replied that i needed it.  I said, I will only do another EB if you knock me out, otherwise i'm not doing it.  My one and only previous EB is the reason I understand the phrase "disassocating due to severe pain".  I will never willingly go through that again, when there is absolutely no reason to.  Knock me out.  

After a full day long delay, the nurse replied that my doctor wanted to talk to me, and wanted to set up a virtual visit with me in order to do so. I replied that that was fine.  that appointment?  3 weeks later.  So...my transvaginal ultrasound showed abnormal thickening of my endometrium, i was having pretty severe bleeding and pain, and the radiology report indicated a need for further clinical testing, my doctor said i needed an endometrial biopsy, but I get to wait 3 weeks to find out why, and to explian that I would not under any circumstances be doing an endometrial biopsy without a general anesthetic. 

awesome.

3 weeks later, I had that appointment.  Thankfully my newfound faith in my new doctor was restored (I was really starting to wonder if i was going to have to fire yet another doctor).  It took us a while to get through all of this but....here's an outline:

Doc: how's the bleeding? has increasing progesterone helped?

Me: yes, it eventually stopped for about 10 days, but started back up.  I still have severe cramping and pain at random times, and bleed very heavily sometimes.  it appears to have no real schedule.

Doc:  hm.  OK, i want to do an endometrial biopsy. That's when...

Me, interrupting: I know what it is. i've had one before.  As I already told the nurse, I will do one only if you knock me out.  

Doc:  we can offer you an antianxiety medication in order to....

Me, interrupting: i don't need anxiety meds. i'm not ANXIOUS about it.  it FUCKING HURTS.  I won't do it, so don't ask me, unless you are prepared to do it with a general anesthetic.  this is not negotiable.

Doc, after a pause.:  we don't do a general outside of the hospital, and we don't do endometrial biopsies in a hospital.

Me:  that's not accurate.  you can get a light general (aka twilight sleep) in an outpatient facility for an IUD insertion.  Why can't you do the same for this?

Doc: we don't have that ability.

Me: Ok.  well that's unfortunate. I won't be doing an EB then.

she then went on to explain that the alternative was a hysteroscopy (which she started to explain, and i interrupted her again and said, i know what it means.  it's  a fairly simple greek combo word.)   I asked a lot of questions about risk factors, procedure, prep, and told her I'd discuss it with my husband and let her know.  

I'll be honest...i wasn't really thrilled with this idea either, but It meant i would be at a surgery center, they would put me under a light general (twilight sleep), and could knock me completely out if something got complicated.  The idea was, an endometrial biopsy took random samples of tissue from your uterine lining, so that it can be examined under a microscope.  If you have uterine cancer, or some other form of abnormal endometrial growth, it would (probably) show up.  If the pathology report came back normal, but bleeding and pain continued, you'd have to do something else, and the least invasive follow-up is a hysteroscopy, where they insert a scope through the cervix into the uterus, and look at the structures.  If there are polyps, they can remove them. if there are other tissue changes, they can document, sample, etc.  And, you are not awake for it.  

Sold.

I had the procedure about 5 weeks later.  To be perfectly honest, I was scared.  Reading the preop instructions, i was truly scared.  I knew this was not going to be fun, and recovery was likely to be very unpleasant, even if they didn't cut anything. Anyone who has had a LEEPing, or a colposcopy, or an IUD insertion, knows that whenever you muck about with the cervix and the uterus, it's Not Fun. Based on my past experience with an EB, i knew it was likely to be exceedingly painful.  But....i'm a growed up. I can handle it.  They took great care of me (I love University Hospitals. They're amazing), and everything went smoothly.  Recovering sucked donkey balls.  I came around, and almost immediately became aware that i was in a LOT of pain.  it felt like the worst cramping you've ever had.  i hugged my lower abdomen, and refused to answer anyone talking to me.  are you in pain <nod>.  what number <shakes head>. do you want something for the pain <nod, crying, panting> do you want a heating pad <nod, panting harder>.

it was...very unpleasant.  after a wait that felt interminable to me, but was probably about 15 minutes, they gave me IV meds.  it was an NSAID, so no opiates, and it took a few minutes to work, but finally the pain eased off.  I have vague memories of the anesthesiologist stopping to check on me - he was a flirty young dude who was sweet to me during pre-op.  I had nothing to give him.  All my attention was concetrated on not crying out from the pain.  My husband was waiting in the car, because he had a bad cold and couldn't come in.   I was fine with that.  I didn't really want comfort. I wanted to be left alone.  Once the meds kicked in, they went over my post op instruction, and the very nice recovery nurse basically ordered me to stop and buy tylenol on the way home and take 1000mg immediately. then take 800mg ibuprofen, 1000mg tylenol, every 3 hours on rotation.  do not wait until you get home.  start immediately.  keep it up for the first 24 hours.

But, it was all worth it.  The doctor found multiple uterine polyps, which biopsied as benign.  Now, some 7 weeks later, I no longer bleed.  at all.  It was a rough week or so right after, with lots of pain and some minimal bleeding, but now that I'm healed, I don't hurt anymore.  

Once again, you don't know you're broken until you're fixed. 

If I hadn't advocated for myself, found someone to proscribe HRT, if i hadn't insisted on finding another doc who listened, if I hadn't refused the endometrial biopsy without a general....I would still be suffering.  I would probably still be bleeding.  I would have gone through a useless procedure, under excrutiating pain, and then been faced with another procedure to figure out what was wrong and fix it, with more excrutating pain.  If i had kept that first doc, or the second, or....

We, women, cannot trust all doctors to have our best interested at heart.  The medical community does not treat women's health with the same urgency or seriousness that they do men's.  Clinical studies are overwhelmingly concentrated on male anatomy and physiology.  Pharmaceutical research and development concentrates on male medical issues, not women's.   When a medication or treatment is developed that can in fact benefit women, our very own FDA often fails to approve it for women, meaning insurance carriers do not cover it.  Women are left with the choice between onerous costs, or continued suffering.  

How many of us know that estrogen is involved in the growth and repair of muscle tissue?  That loss of estrogen can cause to debilitating pain, as muscles can no longer repair thesmelves.  No. we're told that menopausal women get lazy and fat.

How may of us know that progesterone assists with a healthy sleep cycle?  That loss of progesterone can lead to debilitating insomnia.  No. We are told that menopausal women are cranky and unpredictable.

How many of us know that cartilege, nail, and hair growth are all affected by estrogen?   No, we're told that menopausal women "let themselves go".

How many of us know that brain function is protected by estrogen, because it functions as a neuroprotectant?  That loss of estrogen can lead to brain fog, unstable emotions, and loss of memory.

No.  we are told that menopause makes women bitchy and crazy.

What we are told about menopause is all based on the male perspective.  Male doctors, spouses, friends, observe our behavior and center their own inconvenience at the changes they perceive in us.  It baffles me, truly baffles me, that not once did anyone ASK women what we were experiencing.  Not once did any of the informaiton routinely shared about menopause suggest that there were biological forces at play, and that we can study how they happen, and what can be done to prevent them.  

No. We are told this is "normal".  It's all just part of getting older.  that you just have to learn to live with it.

I refuse to ever again accept that anything is just something I have to live with.  Pain is not normal.  These are all things we need to examine, and study. My health is something we need to understand the causes of, the mechanisms behind it.  We need to see if these problems can be prevented, or mitigated. 

Because our health matters.  Our pain is real.  And it's time someone listened.

Sick of hearing about PeriMenopause? Buckle-Up. It's my turn. AKA, women's healthcare sucks. PART 1

A while back, I listened to a program by Rachel Russ of Ideastream Public Media about Menopause, and specifically about the failure of the medical community to study, treat, and even discuss the condition.  I ended up writing into the show to share my experience.  This is a revision of that email.

I don’t think you can underestimate the failure of GPs and OB/Gyn's to take menopause symptoms seriously, and their inabiity to treat it in ways other than throwing drugs at it.

I started perimenopause at age 42.  My primary symptom was severe insomnia - I'd fall asleep fine, but wake up 3 to 5 hours later, and just lay there all night.  After 3 months of this, i had aged visably, I was exhausted all the time, I couldn't think straight.  I begged my doctor for help, with no idea it was related to perimenopause, just that I couldn’t think, couldn’t concentrate, because I wasn’t sleeping. She put me on antidepressants, which did NOTHING, doubled the dose, which caused me to sleep all the time, decided to take me off of them, did it too fast, resulting in withdrawal symptoms: wild, violent mood swings, brain zaps, sudden rages.  I was also given Ambien to help me sleep.  That was the extent of their help for me.  I went on suffering.

At no point did anyone talk to me about perimenopause. At no point did anyone discuss hormone replacement therapy. If they had, I would have told them, oh, my mom had hormone receptor positive breast cancer, so I can’t do HRT.  

Because that’s what I had been told.

At no time did anyone say, actually, that’s not really true.  You probably can, we will just need to do a medical evaluation and medial history to see what is best for you.

I suffered for a decade.  Think about that for a minute.  a DECADE.  20% of my life up to that point.  Unpredictable periods.  Disrupted sleep patterns that came and went.  No hot flashes or night sweats, but my ability to regulate my body temp was completely haywire - if I got hot, it took hours to cool down, and i'd have to use cold compresses.  If I got cold, it was impossible to warm up, and required hot drinks, heating pads, and multiple blankets.  Eventually, my periods stopped, and I started losing body strength.  I hurt. All. Over. 

I went to my docs during all of this.  I complained. The body pain was out of this world.  Just standing up from a seated position was oh my god painful.  I gained weight, because moving hurts.  I had no energy to do anything. I had no libido at all.  If I managed to get motivated to do something, tendons and muscles would sing with pain, get enflamed. I had IT band tendonitis, hand/wrist pain from repetitive motion (hammering motion while laying pavers by my pool, for a couple of hours 2 or 3 days a week), tennis elbow, and golfer elbow.  All of this in a single summer:  within one 3 month period, and I had all of those ailments.  

I went from an extremely physically capable woman, used to doing heavy work by myself, a former landscape foreman, former loader operator, avid gardener, farmgirl....to a woman who struggled to carry a basket of wet laundry up from the basement to hang outside.  Gardening was impossible - no energy, and I'd get so HOT.  My property that used to be filled with flowers, was overgrown with weeds.  People would ask me why had i let everything go? 

It was demoralizing.  My marriage suffered.  I hated myself. I hated my body. I felt old and useless.  I was actively working on accepting that I was ugly, and no one would ever find me attractive again.  That this was what happens when you get old.

I was 54.

Then, it wasn’t a doctor who initially helped me, but an online community of Gen X women.  They kept talking about HRT, and how life-changing it was. Then I happened across a video by some doctor I don’t remember, saying that the risk factors of HRT for women, are LOWER than for testosterone replacement therapy for men, and THAT gets prescribed constantly.  

I thought, huh.  

And I looked around for a menopause expert in my area.  

I found one.  After my first apointment, I sat in my car and cried like a baby. i SOBBED.  Someone was LISTENING.  Someone was explaining how menopause affects the body, how loss of hormones impact things like muscle strength and energy levels.  Someone said there was a way to feel better.  

I started HRT.  Within 3 months, I fired that doctor. She never once even EXAMINED me. She never did blood work.  Asked me a few questions.  Prescribed meds. Told me to go away. When I returned and explained that HRT was causing an ongoing herpes outbreak, she told me I was wrong, that herpes had nothing to do with hormone levels…I politely said, uh..yes it did.  I’ve lived with herpes for 26 years. Anytime I’ve had a significant hormone shift in my body (pregnancy, a miscarriage, birth, stopping breastfeeding, menopause) I suffered herpes outbreaks.  I know my body and how it reacts to the virus.  She refused to increase my dose despite no other changes to my problem symptoms, and told me to come back in 2 months. You had to be there, but she made it clear she was doing so to punish me for disagreeing with her.  I hadn’t ASKED her to increase it. She said, well, since you’re having PROBLEMS I don’t think we should increase your dose yet.  She stood up and walked to the door.  She paused with her hand on the doorknob, door half open, and said, “you know, correlation is not causation,” and shut the door.  

now, don't get me wrong.  That phrase is 100% accurate.  Correlation is not, in fact, causation, and believing it is results in many of the crackpot fake medical treatments and wellness trends that waste billions of dollars a year and harm millions of people.  

This is not that.  I had 26 years of first person observations to base my statement on. I had read medical articles studying the phenomenon.  I had had to stop birth control pills in my 30's because of constant outbreaks that nothing helped. The only thing that stopped them was stopping BC.  She disregarded me and my observations, and denigrated me for daring to think i could voice such an observation.  

I looked around for another menopause doc.  All the others in the area weren’t accepting new patients.

Went to my old OB/Gyn, the one who delivered my daughter.  Hadn't seen her in a few years;  I had been going to my GP for annuals.  She agreed to take over the prescription, and increased my dose. Then she said she hoped that RFK Jr could straighten out the whole Autism thing with vaccines.

<mental version of running into a brick wall>. I had just gone from someone using "correlation is not causation" to dismiss my concerns, to someone actively treating correlation as causation.  I swear you can't make this shit up.

I haven’t been back.  I have no idea what to do now.  I’m on a relatively low dose, and it is definitely helping. But I’ve started bleeding unpredictably, and cramping on and off all the time.  It’s a trade off. 

So.  Yeah. My point is, doctors are given little to no training on how to treat menopause. Let’s be honest - there has been little to no RESEARCH on menopause and it’s affects on physical and mental health of women, or how to treat it.  They throw drugs at it (NOT hormones….anti-depressants. Oh my god, does that make me angry. I am NOT depressed!  My body is betraying me!  Help me fix the problem, don’t medicate me into stupefaction!

I had already been robbed of a decade of my life.  I was robbed of vitality and stamina.  And I seriously resented it.

I eventually tried another doc.  I will continue this sad story in a separate blog post.  You can find it here. 

Life after Hands Off - The Problem about FEAR MONGERING

Let's have a little talk, shall we?  All of you out there just discovering the power of organizing, the power of a protest, the power of finding your people.  The sheer JOY of realizing you aren't alone!  There really are millions of us who are shocked and dismayed by what is happening to our country!

Do I have your attention now? Are you listening? cuz Aunty has some things to say.

Ok everyone - there is this rumor running around that April 20th is when Dump will declare martial law by invoking the Insurrection Act.

Stop.

Yes, it's possible. But...let's take a step back and think about the big picture.

Right now Dump and his regime's policies are WILDLY unpopular, except on the southern border. His tariffs are crashing the world economy.

His admin is trying to say they can do away with due process, and incarcerate, detain, and expel anyone they want from the United States, without engaging with our constitutional rights - they can put anyone they want on a plane and send them to a Gulag in another country. and, OOPS can't fix it now! no take-backs!

Senator Cory Booker spent 25 hours on the senate floor calling out dump's policies, setting a new historical record and capturing the attention of the world.

A few days after that, there was the biggest single-day protest on American soil in history, with up to 5 million people showing up to say how angry and scared and frustrated they are with this regime.

in the past week, there have been 3 incidents where members of Congress succeeded in blocking Dump-backed policies. finally.

They are losing power. Slowly. but it is happening.

Now, there are 2 rumors flying - BIG NEW PROTEST APRIL 19! and....DUMP WILL INVOKE THE INSURRECTION ACT ON APRIL 20!

Stop it. Look at the timeline.

First thing to know - no one knows who the organizers of 50501 are, the people who seem to be pushing for a 4/19 event. there are indications they may be backed by far left groups that WANT the destruction of the US Constitution.

think about that.

we suspect....they don't want to protect our constitution. they want to destroy it, and through that, usher in a new utopia, but....their version.

None of the other groups that were involved in the 4/5 protests are pushing this event. It is too soon to safely organize. it's a day of religious importance in 2 faiths.

We worry that the 4/5 event is the last one we will see that stays that peaceful. The size of the 4/5 turn-out was unexpected by EVERYONE, including organizers, the press. Everyone. A bunch of different things all came together to create the pefect storm.

Now people are aware they can do it...that we can make headlines by showing up. And they WILL do it again; all they need is the right motivation, and we will have an even BIGGER showing!

And the crazies will be ready too. They will be out in force, instigating, seeding the crowd with those bent on violence, to trigger a shift from peaceful demonstration, to violence.

we KNOW THIS. it's what they did with Black Lives Matter. Our white privilege allowed 5 milllion people to gather on the same day and NOT see a massive police response, because...we are white people and harmless. If that had been 5 million black and latino people....the police response would have been overwhelming.

They won't make that mistake again. they won't miss another opportunity to demonstrate how violent the crazy leftists are. they WILL work to turn the next protest violent.

THEN they can invoke the insurrection act, declare martial law, and deploy US military to our cities.

so...STOP IT.

listen to your community leaders. The ones you _know_. Not some mysterious hidden organization that refuses to admit who they are (trust me, people have tired to figure out who they are... people who are just as at risk of legal attention if there is a crack down have tried to find out. something isn't right here)

if we push a 4/19 demonstration, while people are scared of a 4/20 declaration of martial law...that is a recipe for chaos, and an EXCUSE TO DECLARE MARTIAL LAW!!

Step back. Take a deep breath.

You want to help? Find your local organizers. If you can't find them, go to your local food bank, or immigrant services, your public library. look for an area democratic club - you don't have to be a democrat to use them as a resource to find others in your area trying to organize. Ask them. Who is trying to organize locally? Say, "Hey! I want to help."

We will need far more Peace Marshalls for the next demonstration. We got LUCKY on 4/5. At the protest I helped organize, we would have been quickly overwhelmed if things had turned violent. We did not have the bodies to control things.

We need people to help manage lists of resources, and organize outreach to our communities. Who needs help with food, legal services, who has lost their job and needs help finding baby formula? Who can start a community garden to help feed those who have lost incomes? Who has the land? Who sews and can help make things?

and perhaps most importantly, GET OFF OF SOCIAL MEDIA AND MEET IN PERSON! It is only a matter of time, if what you fear comes to pass, that social media will simply be a means for the admin to find out whom to target. If we do not have the infrastructure in place before that happens, it will be much much harder to organize.

Above all else, stop reacting, and start acting. Right now, harnessing the power of 4/5 is far more about building safety systems to support one another than it is showing up for another protest.

Let's use this power constructively, and not give them an excuse to strip us of our rights.

 

I'm concerned about human society.  I mean, let's be honest....you can't be alive in 2023 and not wonder about our longevity.  I don't even know where to start on the list of Holy Shit events in the last few years.  Covid, anti-vaxxers, refusal to mask, an ex president indicted in 2 different jurisdictions (SO FAR) for a variety of serious crimes, including violations of the Espionage Act.  Governments are ignoring the will of the people (Florida, allowing felons to vote.  Ohio, refusing to draw fair districts despite a constitutional amendment.  The US Supreme Court stacked with hyper conservative offspring of oligarchs, and deciding in favor of the scary christian right)

You can't be alive in 2023 US, and not see it...the consistent erosion of empathy.  No one cares anymore.  We hear religious nuts screaming about god's love, in the same breath that they say ti's fine to force a 10 year old to carry and give birth to her rapist's baby.  We have so-called conservatives representing the accomplishments of a wildly successful administration as irresponsible and squandering, despite ALL FACTS clearly showing the opposite.  We see a republican party that is hell bent on stripping the few social safety nets left to us, in what i can only assume is an attempt to control the electorate by keeping us poor, uneducated and exhausted.  

In the last week I have had a half dozen incidents where a service i had paid for failed to provide me with the promised service.  In each case...every single one....i was told there was no recourse.  I was stuck.  So, I paid $270 to get a fedex package there by 10:30am the next day? oops.  we didn't make it. oh well.  I paid $600 for 3 UPS packages to be shipped Overnight Red...and only  2 made it?  oh.  <shrug>  it'll get there eventually.  The fact that I had a crew sitting on site, burning money, waiting on that last package...oh.  sorry.  

Bought an airline ticket.  Need to be there by Sunday afternoon to get the job started.  Flight delayed.  multiple times.  Got there too late to start the job.  Airline's response?  oh well. these things happen.

Bought an airline ticket home.  Flight delays, again.  Realized there was no way my husband would make his connection, so I rescheduled the connection....but that meant he would get on the ground after midnight, a 90 minute drive away from home.  So. we got him a hotel near the airport.  He's had an amazingly long week and is completely exhausted.  

More flight delays.  flight finally pushes back from the gate 90 minutes late...then sits on the tarmac for Two. More. Hours.  in Florida.  in July.  In case anyone was unaware, airplane a/c just cannot keep up with several hundred people in an enclosed tube, sitting in the blistering sun, on black tarmac.  they roasted.  And, did i mention that my husband has a blood clot, and is required to get up and move every 1 to 2 hours, to prevent further clots from forming.  to move "vigorously"?  he was stuck on that plane for almost 4 hours, between sitting on the tarmac, flight time, then another delay getting to the gate when they landed.  

And remember that connection i changed?  cancelled. he was put on a 0630 flight the next morning.  it is now after 11:00 pm, he has no luggage, he hasn't had dinner, he has to find a hotel, the line to get a voucher for a hotel is, no lie, all the way past 3 gates.  hundreds of people.  He knows, if he waits, not only will he be exhausted, but it's unlikely there will be any rooms left nearby.  So he calls me, i help him find a hotel, and he gets the shuttle there.

I call customer service at the airline, try to get him on a later flight.  0630 when he doesn't even get to a hotel until almost midnight, and still needs to find something to eat?  no.  he needs to sleep.  he'd have to be up at 5am, on the shuttle back to the airport by 0530. he has no clean clothes, or his c-pap.  

Customer service is backed up.  no surprise.  Wait time for a call back is 1 to 2 hours.  it's currently 11:20pm.  i'm also exhausted, because we've been dealing with this garbage for days.  But...i stay up and wait for the call.  How bad can it be?  the latest should be around 1:30am, and hopefully will be sooner.  

I went to bed at 2:00am.  just could not keep my eyes open any longer.  told my husband to go to sleep, set an alarm for 0500, and i'd leave him a message on whether he can go back to sleep.  

Remember my internet was out? yeah. still out.  it's been 10 hours by now.  no explanation. no estimate of repair,  no idea of cause.  nothing.  I call again, asking for an update.  i can't even get a yes or no that they have an issue, or it's on my site. nothing.  someone will call you when they get to it.  can i talk to tech support? no.  they will call you.  Can i talk to your supervisor? no. Can I talk to SOMEONE?  no.  

Phone rings at 2:09am.  It's the airline, finally.  dude asks for my husband's record locator number. I don't have it.  ok, how about his ticket number.  don't have that either.  What is his flight number?  I have no idea.  he says, "well, you're welcome to call back when you have the information necessary..."  i say WAIT DON'T YOU DARE HANG UP ON ME!!!" 

The next 20 minutes are excrutiatingly unpleasant.  no, he cannot look up my husband by his name and birthday.  No, he cannot find the ticket without  this info.  I said, i've been waiting for 3 hours for a call that was supposed to take 1 to 2 hours...an already stupidly long time for a so-called "customer service" line.  I'm in bed, because it's 2 in the goddamn morning.  I said, if i pay for a service, i expect to be able to receive that service, and not have repeated delays resulting in horrendous inconvenience and costing me thousands of dollars in work delays.  he said, "well, when i call in to a business i know to have my information available."

omg.

I know he was doing his job.  i know being a CSR sucks.  but jesus.....if i felt, even for one minute, like these companies actually cared about supplying decent customer support, i would be kinder, i swear. But it's just call after call, long hold times, then a CSR who does not give 2 shits about anything.  they have scripts they have to repeat. 

His snark is astonishing.  

The ONLY flight available leaves at 4:44pm.  My husband will get in at 6:15pm to 6:30pn.  ugh.  another wasted day...but his day will be wasted either way - if he flies at 0630, he'll be so exhausted he'll sleep all day.  

next day....it's a Sunday.  In the middle of the airline saga, our home and office internet went out.  Tried troubleshooting.  called our ISP.  submitted a ticket.  they can't tell me if there's a problem with the circuit.  nope. just have to submit a ticket. someone will get back with me.  

We pay $460 a  MONTH for unlimited data, high speed LOS internet, guaranteed 100% uptime. 

My husband, waiting on the flight, washing his only clothes in the bathroom sink, using a hair dryer to try to dry it.... he starts getting calls from one of our customers.  They're down.  It's the unit we just finished a massive shut-down job on.  it might be our fault.  he's stuck in a hotel, in Charlotte, NC.  

It's approximately 10:00am.

Try to reach our employee who managed that job. he's out of state.  Because my husband was supposed to be back, he decided to leave for vacation a day early.  Normally no harm in that, hut he should have informed us....but he left his work phone at home.  i had to track him down on his personal cell.  so he can't go to site.  and is clearly hesitant to take calls for work where he is (i did not ask).  But..it's a 24=7 emergency service company. that's why we provide a company phone.  it's in the paperwork when he was hired that he MUST have it on him, and charged, at ALL times.  we don't expect him to drop everything and run to site if he's out of town, but he MUST be reachable if there is a question.  

My husband asks me to head to site.  be his eyes and ears while he tries to figure out what's wrong.  I get showered, dressed, and am about to head out when the ISP called - can i troubleshoot with them?  ugh.  fine.  the access point where the internet comes onto the property is in one of the outbuildings.  10' in the air.  you need a small ladder to access the locked enclosure.  even with the ladder, it's really hard to see the tiny 1" x 1" screen on the hardware firewall.  I've been using my phone with both bluetooth headset, and hot spot.....and i'm using the camera to enlarge the tiny screen so i can see it.  

phone died mid conversation.  

Went to my car (parked nearby cuz i was literally on my way out the driveway when they called) and plug it in.  wait for it to get 1% charge, and call them back. they can't connect me.  i have to wait for another call.  no idea how long it will be.  

<grinding teeth>

wait 10 minute.  give up, and head out, going to site. Meanwhile, my husband has been on the phone with the down plant, helping them troubleshoot the problems.    I manage to get ahold of him, and i ask if i'm going to site or not. No.  it's clearly not our fault, something weird is going on, and there's nothing i could do.  he will have to head there when he  lands.  

ISP calls back.  There's nothing wrong as far as they can see.  but, says i, the access point clearly says "NO INTERNET.  CALL YOUR ISP".  um....um.....I will continue to troubleshoot.  we'll get back with you.  

around 6:30pm.  an hour away from site.  oh goody.

guess what?? FLIGHT DELAYS!!!

he lands at 8:30pm instead of 6:30pm.  a full 24 hours after he was originally supposed to be on the ground.  

we paid for three hotels for saturday night.  1 in florida (he thought he'd be there until sunday...) 1 in Charlotte (stranded), and 1 in Pittsburgh (he though he'd land too late to drive home).  three. hotels.  

He finally gets to site about 10:00pm.  He was there until 4:30am Monday (today).  still in the same clothes he put on Saturday afternoon.  

I still don't have internet.  I still don't have any answer as to what is wrong.  I have a local tech coming to check my hardware side sometime in the next couple of hours.  

FedEx and UPS just billed us for the failed packages from last week.  full price.  we have to contest the charges, even tho' they KNOW they screwed up and failed to get the packages delivered on time, because we already talked to them.  nope.  we have to do it, now that the charges have been sent. 

Airline hasn't responded to a request for help, to pay for the hotel, the meal, while stuck in Charlotte. 

Haven't heard back from Hilton yet.  hopefully they'll comp us at least 1 of the 3 rooms my husband supposedly stayed in Saturday night. Kind of hard to be in 3 cities in 3 states at the same time.

and, none of these companies will make me feel like my money was well spent, that i paid for a service and will get what i paid for.  No one cares.  No one tries.  punch a clock, take your pay...corporate bosses tell you to punch a clock, take your pay, and do what we say. don't ever promise to be helpful.  

don't ever admit that we don't care what the customer wants, or that no one is every going to call them back.  Just read these lines, dump the problem into someone else's queue, and go on to the next call. 

and for that, you will make $15/ hour, if you're lucky, with no benefits, no vacation, and no sick time.  welcome to america.

we are all fucking doomed. 

How Crochet Taught Me to Value my T1D Daughter's Doctors Even More

In addition to being a parent to a T1D daughter, I'm an avid crocheter.  One of the many recent innovations to come about from the storm of social media crafting groups is something called a Temperature Blanket - the basic concept is you assign colors to a range of temperatures, then you crochet, or knit, or weave 1 row for the average temperature each day for a period of a year.  This has been used to document things like the year of a marriage, or someone's birth year, or just the current year as it occurs.

Recently while working on my own temperature blanket, I had a brain-storm....this system can be applied to almost anything that can have a number assigned to it.  Well, what number do all Type 1 Diabetics have constantly on our  minds?  Blood Glucose, of course!

So I came up with the brilliant idea of doing a Blood Glucose Blanket - in my mind's eye, I'd assign shades of green for the "ideal" range (say, 70 to 150), reds for the "lows" (X to 69), and purples for the "highs."  I was so excited about my idea, and I thought maybe I could work on it and give it to my daughter next year for her birthday.  I was PSYCHED!

Because I wasn't sure how to set it all up, I decided to post about it in one of the many online groups I'm in that focuses are crafting - this particular groups is just for "snarky" or "offensive" crafters, because I am by nature a pretty earthy sort of person, and that's where I felt most at home.

I was rather startled by the reaction.

I got a LOT of "wow what a great idea!" reactions, and, "what a loving and original way of showing how much you care!".  Those were gratifying, to be sure!  However, I also got a few responses from adult Type 1 Diabetics which were overwhelmingly negative - here are a couple of examples:

     " Honestly, I would hate this. I’m also Type 1. I just had a conversation a few weeks ago with a bunch of my Diabetes Camp friends from almost 20 years ago about how much guilt and shame we already feel about not taking care of ourselves better"

     "I know for sure I'd not want to see a year of my failures and struggles to stay even mapped out on such a visual scale.   It's hard enough getting my book reviewed with the nurses every few months. "

I realized something that I hadn't really understood before - my daughter's doctors had told me more than once that scaring her into taking better care of herself is proven not to work.  I was so frustrated with her tendency to pretend she wasn't diabetic, and ignore her BG, and fail to bolus for meals.....I was terrified for her, and wanted to try to get her to understand what a dangerous game she was playing.  And here, I suddenly had a real world demonstration of what those doctors were trying to tell me.  These adult Type 1 Diabetics in my crafting group were mostly young - i.e., between the ages of 25 and 45.  They were products of the medical system in place between the 80s through the early 2000's, during a time period when it was common practice to try to shame patients into being healthy.  I remember those days, and I had noticed more than once that there had been a shift in attitude in recent years. I particularly noticed it at the dentist, where I no longer felt like I had to be ashamed when I knew I hadn't taken adequate care of my teeth, and I had to face my dentist and hygienist with that knowledge.  I know I avoided dental appointments for years because of it.  But....they no longer reacted that way.  They stayed positive, suggested ways I could improve, warned me about possible damage, but I never once felt ashamed.  

THIS is what my daughter's doctors were trying to tell me - if I stress the dangers, and the fears, and try to shame her into doing things right, the long term results are a shame in the illness itself.  I have always, from the very beginning, treated my daughter's diabetes as "The New Normal".  I never, ever, wanted her to feel damaged, or broken, or somehow LESS than her peers.  I wanted her to be realistic about what it meant, but I also wanted her to know that it didn't mean she was any less in any way.  

And the idea for a blanket is what demonstrated to me what her doctors had tried to communicate so many times.  There is an entire generation of Type 1 Diabetics out there who overwhelmingly feel that they are inherently not good enough because they don't always perfectly maintain their illness.  That is heart-breaking.

So, with all of that in mind, I decided 2 things:  1. I would talk to my daughter first, obviously.  I would explain the idea to her, and see what she thought of it.  I would make sure to ask her how she would feel about having a visual, hands-on representation of her daily struggle right in front her her.  I would then let her decide if she liked the idea.  and 2. I would not assign colors based on value judgments.  Instead, we would pick colors she liked, in a configuration that would allow us to do ranges from low to high.  That way, looking at the blanket it wouldn't be immediately obvious which were "good" days and which were "bad."

And I did so.  I talked to my daughter, and before I had even finished explaining my idea, her eyes LIT UP!  She was so excited by the concept!  I asked her if it would bother her knowing it would show good AND bad days.  she said no!  I even had her read some of the comments from my post, and she seemed honestly baffled by them - why would you feel shame?   She didn't do anything to deserve this disease; yes, she fails to take the best care of herself sometimes, but it's still her doing the best she can with an illness she can't get rid of.  

So.....what is my point?  I guess....thank you to the medical professionals who figured this out.  Thank you to all of the doctors and psychologists who did all of the studies and surveys which taught them that there was a problem with the way medicine was practiced, and actually caused a change in the way patients are treated.  It may seem silly that this all came from something as unimportant as a crochet project....but I really mean it.  Thank you.  Because of all you do, my daughter not only can look forward to a long and healthy life, but she won't do so hating herself the whole time.  There is no price I can put on that.

I always knew crafting was cathartic....

Blood Glucose Blanket - A Crochet Visual of Type 1 Diabetes

As I mentioned in my previous blog post, How Crochet Taught Me To Value My T1D Daughter's  Doctors Even More, in the process of coming up with the idea for this blanket, I learned a lot about how perception affects mental health.  However, this post isn't about that, but  I hope those who have found themselves here reading about a crochet project will also go read about what I learned while brainstorming this project.

With the proliferation of Temperature Blankets, Temperature Scarves, and even Temperature Amigurumi, I recently came up with the idea of using the same concept to document my daughter's blood sugars.

But, I am getting ahead of myself.

What is a Temperature Blanket?  To paraphrase what others have said, the basic concept is that you assign colors to ranges of temperatures - for example, cooler colors for colder temps, warmer colors for the warmer temps.  Then during the course of a set period of time, usually a year, you record the temperature of your choice each day; some people choose to use the daily average...other use the high, the low, or just pick a time of day and use that temp.  Then, you translate that temp into a color, and crochet (or knit) one row in that color.

The result is a lovely, sometimes garish, project which is unique - no one else will ever be able to duplicate it.  Many people used the temps during a year significant to themselves or someone in their lives - the year of a parent's birth, or a child's, or a marriage.  Some people added a color for snow, or rain, or sun....the options are endless.

One day I was working on my own temperature blanket - I had decided to do one this year, since the affects of climate change were resulting in very unsettled weather where I live, and temperatures were all OVER the place this winter - when  i was thinking about how this concept could be applied to almost anything that could be reduced to numbers - your height as you grown, your body weight, even shoe size!  Imagine recording your child's height once a month for 18 years!  then crocheting that into a blanket..and gift it on his/her 18th birthday!!

Then it struck me.....Blood Sugar!  My 12 year old daughter is a Type 1 Diabetic, and she lives her entire life governed by that 2- to 3-digit number read off of her glucometer.  Every minute of every day that number dictates what she eats, does, how she feels.....and in some cases whether or not she goes to school, goes to bed, or goes to the emergency room.  We have 2 years of data already from the downloads from her Continuous Glucose Monitor....why can't I translate that into a range of colors and crochet her a blanket that will be  uniquely hers?!

To read about the debate over whether or not to do it, please see my previous blog post about this.

Working with my daughter and selecting yarns which would work for this particular project (i.e., the right gauge, affordable, and available in a range of shades of the necessary colors), we picked out colors and I set up my key.  I chose to record her blood glucose readings at noon every day.  I chose that time because it will allow us to have a great variation - during school days, every other day that's after gym;  during the summers that's probably going to be when she's swimming.

These are the ranges I used:

0 to 69
70 to 109
110 to 149
150 to 199
200 to 249
250 to 299
300 to 349
350 to 399
400 to +++

You will no doubt notice that they aren't evenly distributed, at least at the bottom.  That was because I was trying to accurately represent the ranges typical for my kid on a routine basis.  If one of my readers is interested in setting up their own, my advice is to record the numbers you intend to use first, then see how the numbers break down - if you rarely see anything above, say, 250, then make 250 and above your top number.  If you see a lot of lows, break your lower ranges into more divisions...and so on.

My daughter chose purples as her favorite color, but in order to get enough colors to give interest, I suggested combining purples with Teals, which is how we ended up with the colors we used.

I chose a very compact stitch called Moss Stitch - it allows you to do a lot of rows in a small area, because in order to do an entire year, 365 rows in many stitches would be ridiculously large.  I then found a pattern online for a ripple using moss stitch, because I wanted something with a little more interest than just straight rows.

Here we have the results of January and February.

I'm very very pleased so far!  I figure once we get to summer, and all of the activity my daughter will be engages in, the colors will shift more towards those assigned to the lower ranges.  On the other hand, I am very pleased that those sorts of changes are not obvious.  I know what colors represent dangerous lows, or dangerous highs, but no one else does...and they aren't obvious - there's isn't one color that is the "ideal", and everything else is wrong...so my daughter won't have a constant reminder when she looks at it that she didn't have perfect BG all the time.

I will continue to post updates on my progress as I work on it through the coming year.  I can't wait to see how it all turns out in the end!

jaz