United Healthcare Almost Killed my Kid

 

On Halloween night of 2016, after a weekend spent trying to figure out why my 9 year old daughter felt crappy, with vague symptoms like weakness, nausea, clammy skin, stomach ache, and frequent urination, I took my still costumed daughter to the local urgent care with a suspected UTI.

Instead we were sent to the best children's hospital in the area with a diagnosis of Type 1 Diabetes.  

In case you've never experienced this sort of life-changing chronic diagnosis in your life, there is really no way to express the emotional, physical, and financial stress you just were gifted.  Type 1 Diabetes is the sort of illness that never goes away, requires 24-7 intervention, a level of medical and dietary knowledge akin to approximately a 2nd year med student, and a determination and fortitude akin to that of a finely honed marksman.

But, that isn't what this post is about.  This post is about how the American healthcare industry (including but not limited to the hospital system, medical billing systems, health insurance industry, pharmaceutical industry, pharmaceutical benefit system, and durable medical insurance system) tried it's best to kill my child, and continues to do so to this day.

My daughter was just 9 years old, had just finished trick or treating, and was dressed in her black and purple butterfly costume:  The frilly black and purple skirt, the black top with sparkly heart on it, the huge black and purple wings and the eye mask and long antennae headband.  She had her bag of candy, and our family dog was at her side, a black lab/sharpei mix I had painted to look like a skeleton.

That was the last moment of her normal childhood.  From that point on, she was a medical burden.  

No, I never called her that.  No one ever called her that.  But now, 10 years later, as we celebrate her 10 year diaversary (it's a thing among diabetics), we had reason to discuss the time in her life when she had to be admitted to an inpatient pediatric psychiatric ward for suicidal ideation.  And, I came to a startling realization.

Our medical industry in the united states isn't just killing people by denying care, and making access so expensive people avoid doctors...they are killing children by making them feel like their existence is destroying their families.

I made a lot of mistakes as a parent.  I never realized that one of the biggest ones I made was allowing my child to overhear my interminable calls with doctors, insurance companies, pharmacy benefit managers, durable medical suppliers, peer to peer review managers, pharmacies, and all of the rest of the bullshit americans accept as part of getting care in our country.  I allowed her to overhear discussions between her father and I about medical debt, setting up monthly payments, how early in each year we hit our deductible, then our out of pocket maximum, and how long it would take to pay down each bill added to the pile.

Looking back on the time in her life when she seriously did not want to exist anymore, she said not only did she have an alarmingly long list of methods of self-harm she had considered, but she sincerely felt that our lives would be better if she stopped being such a strain on them.

This was obviously a painful conversation, but I firmly believe in being open and honest with my adult children, and this was another one of those.  It hurt.  And, as the days passed after that conversation, and I thought about it over and over, I realized I was very much responsible for her feelings of self-hatred.  I was responsible for letting awareness of the hassles I was dealing with to be known to a child.  

oh, that hurt.  that hurt a lot.

But I sat with it, and talked about it with friends, and family.  And I apologized to my adult child.  I am sorry.  I never should have allowed her to become aware of that part of her care. It wasn't her fault.  None of it was her fault.  And I allowed myself the luxury of ranting about my hassles, of having phone conversations in the car while she was with me, of discussing payment plans and collections notices.

Oh.....what a moron I was.

But I don't lay full responsibiliity for this on me.  I reserve a large portion of my rage, of my regret, of the blame, on the abortion passing as a healthcare industry in the united states.

We were uninsured when she was diagnosed.  Her hospital bill, for 5 days in patient, was $13,000.  Her first prescription pickup was $1,600 - 2 kinds of insulin, syringes, glucose gel, alcohol wipes, glucometer, test strips, lancettes, ketone test strips.  Today, that would probably be closer to $3,000, or probably more.  

We had psychiatry appointments starting immediately, at an office 90 minutes away by car.  Pediatric Endo appointments every 2 weeks for a few months, also 90 minutes away.  

We got her insured within a few months (thank you ACA, for allowing a kid with type 1 diabetes to be able to get health insurance...).  We didn't qualify for any assistance programs. As self-employed, we made too much money...at least on paper.  So, we had to buy the best insurance we could find, and pay the rest out of pocket.

What does that mean? the best insurance we could find?  I honestly don't remember anymore, so much has happened since.  But I know we had a $550/mo premium, with a $3,000 per family deductible.  The next year, it went up by 80%, and our deductible went up to $8,000 per family.  By 2020 we were paying $1,800 per month for a $11,500 family deductible policy, and getting anything covered took multiple phone calls, letters, faxes, emails, and weeks of wasted time.

She was approved for an insulin pump shortly after the start of 2017, just 2 months after diagnosis. We started researching, and settled on an option, and worked with the endo and the rep from the manufacturer to get it approved by insurance.

it took 4 months.  4 months to get approval.  an uncountable number of phone calls, faxes, calls to the doctors, requests for prior auths, appeals....but we got approval.

Then the durable medical supplier lost the paperwork, and insisted we didn't have approval, so we had to go over it all again.  

A few months later, I made the decision to get her on a continuous glucose monitor.  Not having it was literally killing me - you have to get up multiple times every single night to test your kid's blood sugar.  If she were to drop low, she could die in her sleep, without anyone knowing something was wrong. So you act as your child's medical monitor, and you get very good at moving silently, using a lancer to prick a finger (or a toe), test the blood sugar level.  If they're high, you prep a syringe, inject your child.  if they're low, you wake them up enough to drink juice, or soda.  You stay up, and return, and test again in 15 minutes.  You repeat this process until her blood sugar stabilizes.

I had to have the monitor, for my own sanity and health.  I wasn't sleeping. I now had 3 jobs - my full time job, primary caregiver to my child, and manager of her healthcare/insurance.  That took 3 months to get approved.  Then we had to schedule training, and she hated it.  

Within a year, she was diagnosed with epilepsy.  Another year, she had an acute appendicitis, in patient stay for appendectomy.  Then the psychiatric problems started, with anxiety, depression, adhd, then IBS, with multiple inpatient cleanses, a colonoscopy, and an endoscopy.

And the call from the school, she's considering self harm. she has a plan.  she has to get to an inpatient facility for evaluation.

If you have never had to face the reality that your child wants to end her own life, count yourself very very fortunate.  Because it is sincerely one of the most horrific things to endure on this earth, imho.

And, don't get me started on how horribly THAT system is set up.  oh. my. god.  

Now, 10 years in on this roller coaster, I'm realizing that the American healthcare industry has oh so much more than the deaths of millions through medical neglect to answer for.  So much more than the bankruptcy of millions.  than the loss of opportunity by families like ours, who can no longer afford family vacations, or to upgrade their homes, or send their kids to college.

They are killing our children.

It is a well understood complication of Type 1 Diabetes that rates of self-harm, depression, and suicide are very high.  The field of pediatric endocrinology has made great strides in the last 2 decades in mitigating that tendency, by changing treatment plans, by incorporating psychiatric care from the moment of diagnosis, by teaching parents what not to do when trying to get your child to comply with the constant strain of day to day care.  Children learn young that they are worn out.  That they just want to be normal.  So many convince themselves they aren't really diabetic, and discontinue all of the day to day things they MUST do to stay alive.  It's known as burn-out, and it is very very common.  Parents are taught to watch for it, and if their endo is good, they are taught how to handle it the right way.

If the endo is bad....but I digress.

So you have a child that is already dealing with this level of stress, day to day, with a disease that is often unpredictable. what worked yesterday may not work today.  Puberty hits and all of the normal routines go out the window, because puberty hormones cause wildly unpredictable things to happen to insulin absorption rates and glucose levels.  Puberty backs off, and suddenly you have to start over learning all new routines again.

And the constant fight to get the care you need.  

Your insulin pump is no longer covered by your policy - you have to change.  Your insulin is no longer covered, you have to change.  learn a new medical device. New insurance provider, so new durable medical provider.  new generation pump, so have to upgrade, but new pump isn't approved for durable medical, so you have to go through pharmacy benefit.  insurance benefit doesn't cover through pharmacy, so need to appeal.  new medication for ADHD isn't approved for under 16 year old yet, so file for exception.  Need a blood draw to test for celiac, but she's developed a severe phobia of IV's and blood draws, so require special assistance.  The driving, the hospital stays, the prior authorizations, the denials of coverage, the surprise billing.

It never. ends.  

The US Healthcare industry has so much to answer for.  I will never be out of debt.  I will never trust a doctor or pharmacy to be able to help me without me having to put hours of work into the process.  

And I will never forgive the harm done to my child.  Not if I live to be 100. Not if SHE lives to be 100. Because if she does live that long, it won't be because of them; it will be because of me, and because of her...and despite every single thing they could do to try to kill her.

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.