Musings of a Dysautonomiac

Working on Being Awesome Without Feeling Awesome

POTS mini conference…

Great news! If any of you are located near southern California, I highly recommend you check this out!

CHOC (Children’s Hospital of Orange County) is offering a great POTS conference on December 3-4, 2016 in Orange, California. The conference is $25.00 per person for patients/family members. There is also a conference for medical professionals that you can share with your doctor.

The schedule includes speeches from many of the POTS superstars as well as a breakout session for teens so they can connect with others facing the same battles. To check out the full schedule, click here. Topics covered include POTS, EDS, MCAD, and chronic pain. Here’s the list of doctors who will be presenting:

Renee Ballentine

Ashish Chogle

Pradeep Chopra

Jose Criado

Clair Francomano

Blair Grubb

Inderpal Randhawa

Michael Recto

Andrew White

Paul Yost

Neda Zadeh

Although the conference is at the Children’s Hospital, it is for POTS patients (and family members) of all ages. CHOC has arranged for a discount rate at the Doubletree Hotel in Orange County, if you need to stay overnight. There’s also a pizza social (with vegetarian and gluten-free options, I think) on that Saturday night. Should be a lot of fun!

For more information, or to register, check out the conference website. Slots are filling up fast, so I recommend registering soon.


when good doctors happen to bad people…

I’d like to think that I’m not actually a bad person, but I’m continuing a theme. After my previous “when bad doctors happen to good people” post – I forgot to mention the doctor who, after talking to me for about 3 minutes told me he couldn’t help me, then proceeded to ask me for free legal advice for the next 15 minutes – I thought I should share some recent positive experiences with doctors so I don’t seem like a doctor-hating asshole.

Don’t worry, I’m not going to give you the play by play about this visit. As far as I’m concerned, as long as you don’t violently shove the speculum (or anything, for that matter) into my hoo hoo, you don’t talk to me about the weather while you’re all up in my business, and you’re not so attractive (regardless if you’re male or female) that I’m wondering whether I should have shaved my legs, we’ll get along just fine.

What I liked about this doctor is that she really listened to me. I found her online when I was searching for a doctor in my area who specializes in hormones because, as you know from previous posts, I suspect my hormones have been out of whack since I stopped birth control pills. Fortunately, she’s with my medical group so it was a breeze getting into see her. After so many doctors have blown me off as someone who is “too young to have a hormone imbalance”, it was a relief to be heard. She mentioned she thought I could be going through pre-menopause, but ordered a bunch of tests to check. For those who may be experiencing similar symptoms, here’s what we tested:


progesterone estradiol testosterone, total
FSH  Hemoglobin testosterone, free
LH Level Cholesterol testosterone, bioavailable
HDL cholesterol LDL cholesterol triglyceride
TSH DHEA insulin

I have a follow up appointment soon to go over the results, but even if everything comes back normal, it was very validating to have someone take my concerns seriously.

Cardiologist (POTS Doctor)
If you’ve read this blog for a while, you probably already know that I have a wonderful cardiologist. He listens, he’s willing to try new things, he’ll joke around with me and say ‘shit’ in front of me – pretty much everything I look for in a doctor. However, my appointment recently was with his PA, and I was skeptical whether she’d be as good. I was pleasantly surprised to find out she is very knowledgeable about POTS and was willing to help in whatever way she could, perhaps even moreso than my cardiologist.

I was discussing with the PA my frustrations at going to Urgent Care/ER when I need saline IV fluids and how I’m treated like a drug seeker. IT’S SALT WATER, PEOPLE. I’m not asking for morphine or heroin. Even the emergency doctors that are willing to provide an IV insist on conducting an EKG and other tests first, which I have to pay for. It’s expensive and time consuming, and often I end up abandoning the idea even if it would make me feel better. The PA offered to write a letter that I could bring to the ER that indicates that I have postural orthostatic tachycardia syndrome (POTS), I am under the care of a cardiologist, I am hypovolemic and a saline IV at that rate of 666cc infused per hour would be beneficial. The letter then presented the symptoms and corresponding codes. I can’t copy and paste the letter here, because I don’t own the copyright to it, but I can share the symptoms and corresponding codes:

Sinus tachycardia     ICD-10 code R00.0

Lightheadedness/Presyncope/Syncope     ICD-10 code R55

Headaches    ICD-10 code R51

If you have difficult getting an ER/Urgent Care to give you fluids without an inquisition, I recommend asking your doctor if they can write a similar letter.

After she gave me the letter, the PA then asked why I didn’t regularly receive infusions. With the beta blocker, my tachycardia is fairly well controlled, and my blood pressure never drops dangerously low. However, even with controlled heart rate and BP, I still can’t stand for more than a few minutes. Because I have low blood volume, she said I would benefit from ongoing infusions, I just won’t need them every week like those with low BP. So, she wrote the order, and it has since been approved by my insurance.

I can’t begin to describe how happy this makes me. I just call the infusion center to schedule an appointment, spend an hour or two receiving saline, then go about my day. I’m hopeful this could have a huge impact on my ability to care for my mom each month. It’s so difficult to help her walk when I have difficulty standing, and the weather recently isn’t helping. Everytime she comes to town it’s hot. Guess which days she’ll be here this week?

7 day weather forecast

can you guess??

She comes to town tomorrow, so it’s too late to schedule an IV before this visit (which is unfortunate because I have had a migraine for two days), but now I even have the option of calling the day after she leaves and trying to get in for an infusion. I know an order for salt water anytime I want it may not seem like a big deal, but if nothing else, it gives me hope.

And hope, my friends, is the biggest of deals.

The miserable have no other medicine
But only hope.
~William Shakespeare

Smell ya later.
– Linds



Today marks the first day of Dysautonomia Awareness month, and tomorrow is the last day of Invisible Illness Awareness week, so I like to think of today as the “Invisible – Dysautonomia Vortex” where the two cross. The theme for Invisible Illness Awareness Week this year is “This is Chronic Illness” where people are encouraged to share a glimpse into their daily life. If you’d like to participate, more information is available here.

I decided that my contribution to this year’s theme would be to share an average day for me, so a week ago (not this week, as my mom was in town and those days are anything but “average”) I kept a journal of what I did that day to share with you. This is an average “good” day – I made it to work for a full (part-time) day, no trips to the ER or Urgent care, I didn’t fully faint, and I didn’t feel like I was having a heart attack. As you’ll notice, I have included non-illness entries, as my life is not dictated by my illness.


5:21 am – wake up to this attractive view:

dog butt


5:40 am – Take quick EKG. Check fitbit for sleep statistics. Only woke up 22 times last night. I AM THE BEST SLEEPER EVER.

5:45 am – Take dog out, down electrolyte drink.

6:15 am – Shower. Run out of energy after only shaving left leg. Apparently it’s going to be a “pants” day. Take beta blocker.

7:30 am – Too many palpitations to play with dog, wonder when beta blocker will kick in. Sit in chair and laugh while dog plays by himself. Smooch on dog before leaving for work.

9:00 am – Ignore co-workers: still too many palpitations to have a normal conversation. Try for “cool gal” head nod instead. Fail miserably. Again wonder when beta blocker will kick in.

t-shirt: not all disabilities are visible

my awareness month t-shirt

9:36 am – Moderate pain and fluttering in chest. Very uncomfortable, but had it before, so not worried. Again wonder when beta blocker will kick in.

9:49 am – Finally able to converse with coworkers. Trade Adam Sandler movie quotes.

9:58 am – Suddenly overwhelmingly tired, too tired to stand up. Beta blocker finally kicked in. Make cup of tea to combat fatigue.

10:42 am – Palpitations from caffeine in tea. Debate taking another beta blocker.

11:45 am – Trade slightly inappropriate sexual comments with coworkers. Working in an office full of ladies has its benefits.

12:13 pm – Spend 20 minutes trying to think of that one word, you know, that one word. It means not using correctly. Stupid brain fog.

12:25 pm – Realize I only brought a granola bar and apple for lunch. Stupid brain fog. Eat granola bar and old suspicious looking ketchup packets in work fridge. Pretend its donuts.

1:35 pm – Spend another 15 minutes trying to think of that one word. You know, it means using incorrectly. Stupid brain fog.

2:27 pm – Adrenaline rush when silence in office is interrupted by loudly ringing phone. Spend next 23 minutes convincing my body that I don’t need to beat up, or run away from, said phone.

3:11 pm – Severe tingling in left foot, unable to fully extend. Haven’t had it before, so slightly worried.

3:35 pm – Misuse! The word is misuse!! Down another ketchup packet in celebration.

4:02 pm – Stop to get take out since I forgot most of my lunch. Wait in line to order.

4:09 pm – Leave restaurant without food, after having blacked out from standing too long. Lie down in car while nausea and lightheadedness subside.

4:46 pm – Arrive home from work. Give self pep talk to climb stairs up to bedroom. Make it up stairs without issue. High five dog in celebration.

facebook post

he’s adorable when he remembers things

4:48 pm – Nap.

6:00 pm – Dinner.

7:00 pm – Take dog for walk. Doing okay, so slow jog with dog. And….

7:00 (and 15 seconds) – ….I’m a fricken idiot. Try to finish walk without falling down.

7:15 pm – Soothe after-walk palpitations with delicious mango popsicle.

7:40 pm – Start 7 minute abs workout.

7:47 pm – Stand in front of mirror searching for evidence of abs. No such luck.

8:08 pm – Take handful of pills and supplements.

8:32 pm – Try not to puke from meds.

9:26 pm – Watch Friends reruns something that makes me sound smart.

9:48 pm – Fall asleep to this adorable view:


we like to hold hands

11:04 – Wake up with tachycardia and adrenaline rush. Accidentally grab dog’s weiner while feeling to see if he’s on bed. Find out the gross way that he is.

1: 38 am – Wake up with palpitations and shortness of breath.

3:26 am – Wake up with chest and neck pain.

5:17 am – wake up to this gorgeous view.

dog butt

Friends: There are lots of events going on around the world for Dysautnomia Awareness month. Tonight, the Niagara falls will turn turquoise in honor. Be on the lookout for other events!

“Life is not a problem to be solved, but a reality to be experienced.” – Soren Kierkegaard

Smell ya later.
– Linds

5k walk/run in springfield, oh…

Friends (I call everyone “friend” – if you’re reading this post, we’re friends. Even if it’s not mutual. Deal with it.), if you happen to be in the Springfield, Ohio area, or know someone who is, and do not have plans this Saturday morning, September 24th, please consider joining this 5k walk/run for Standing Up to POTS, a 501(c)(3) organization that supports awareness and research. It’s not too late! You can even show up on the morning of the walk. For more information, visit the Standing Up to POTS walk site.

Reblog: Sept. 30th, My Visibility Day

One of the blogs I follow, Dysautonomia Dorothy, recently posted about starting a “Visibility Day” on September 30th, during Invisible Illness week, which runs from September 26th to October 2nd. For more information on Invisible Illness week, click here. I think it’s a wonderful idea to have a day where we bring awareness to our invisible illnesses by making them visible.

So, read Dysautonomia Dorothy’s post linked below, and if you’re so inclined, wear a t-shirt, button, sign…whatever you want to do to make your illness visible on September 30th. And, spread the word!!! We can’t expect people to know about our illnesses if we don’t educate them.

Smell ya later.
– Linds

As a person with an invisible illness/invisible disability, I often get funny looks when being visibly disabled in public. We have all heard stories of the notes left on cars parked in handicapped…

Source: Sept. 30th, My Visibility Day

when bad doctors happen to good people…

I feel like most people with complicated chronic illnesses deserve honorary medical degrees. Every week I spend countless hours reading medical journals and researching different illnesses. The number of doctors I have had to educate on my condition is astounding. I actually left my old PCP because he had never heard of postural orthostatic tachycardia syndrome (POTS), and didn’t seem to have any interest in learning about it. I see a cardiologist for my POTS, but its important that the doctor who sees me most often at least have a basic understanding.

As you know, when I was first diagnosed with POTS, the doctor walked in after the tilt table test (as I was still strapped to the table), told me I had POTS, to drink a lot of water, and that I would never have kids (which is incorrect – I have POTS friends who are mothers). Needless to say, that was the last time I saw that doctor.

Towards the end of last year when I suddenly dropped a lot of weight, I had a conversation with a doctor that went like this:

conversation with doctor

Again, last time I saw that doctor. I was born with good genes and have almost always been at the target, or even slightly under, the suggested weight for my height. There’s something wrong when I lose ten pounds without trying.

Most recently, I saw a doctor about imbalanced hormones. As you may remember from a previous post, I have had an awful time getting off birth control. It has been over 14 months, and I still have crazy symptoms. I finally made an appointment with a doctor to discuss it. After describing all of the difficulty I have had since I stopped birth control, her advice was to go back on birth control. If that’s the only answer, then great, I’ll go back on. But, shouldn’t we try something first? Check my hormones, run standard blood tests to make sure it isn’t something else? I left that visit nearly in tears – probably 70% from the hormones, but a good 30% from frustration at the doctor.

Sometimes you have to think out of the proverbial medical box and take matters into your own hands. I ordered my own hormone tests for estrogen, progesterone, testosterone, DHEA and cortisol. Can’t say that I’m surprised the test confirmed that I have a major imbalance going on. I called another doctor to make an appointment, and was told I’m too young to have a hormone imbalance because I’m not going through menopause.


Many POTS patients are first told that their symptoms are just from anxiety, or that they’re just seeking attention. Friends, you know your body better than anyone else. If suddenly something is happening that did not happen before, get it checked out, and don’t let any doctor tell you “it’s all in your head.” It’s not.

Being chronically ill is an ongoing uphill battle. You probably fought to get an accurate diagnosis. You’ll fight for adequate treatment. You’ll battle to be heard and believed. You’ll never stop fighting, but you’ll be stronger because of it.

Go into your appointment with a list of topics you want to discuss and tests you want run. Be transparent. If you’re disappointed in a doctor, let the doctor know how s/he failed to meet your expectations. If you have a great doctor, let the doctor know s/he is appreciated. If a doctor isn’t working for you, fire him/her. Your doctor works for YOU. Expect the same quality of service you would demand of yourself.

As I’ve said before, life is too short for bad sex, cheap beer, and doctors who are idiots. Write that down.

screenshot from facebook

i do, however, love all the nurses i have seen

Some of the best appointments I have had were with alternative medicine practitioners. Earlier this year I went to a naturopath who was exceptional. She spent 45 minutes listening to me, asking a detailed history. She was very compassionate and, although she didn’t know much about POTS, she knew a lot of about the autonomic nervous system (ANS), and thus understood how a dysfunction of the ANS would affect my body and, more importantly, my life.

If you’re having difficulty finding a doctor who understands or who is willing to treat you, I encourage you to look into alternative medicine. Insurance often does not cover alternative medicine practitioners, although I recommend contacting your insurance to be sure. Mine will pay for acupuncture, but not other holistic type of treatments. Finding answers, being heard is priceless. I think the best treatment comes from a team of both traditional and holistic doctors who complement each other’s style, and a knowledgeable, confident patient. Be your own advocate.

Friends: I’d love to hear about your experiences with doctors, traditional or alternative.

“I love the person I’ve become, because I fought to become her.” – Kaci Diane

Smell ya later.
– Linds


understanding invisible illness…

Like usual, I’m behind on my blog posts. I have about 5 drafts on different topics, but have yet to find the time to finish any of them. As you know, lots going on around here lately with my mom participating in the PSP study, and my blog is suffering. So, I was pleased when Victoria contacted me and asked if I would be interested in posting some of her content on my blog. Victoria owns the website Burning Nights about Complex Regional Pain Syndrome (CRPS) (visit her site here), but this graphic really applies to all invisible/chronic illnesses, including POTS.

I love this graphic because it pulls together so many aspects of having an invisible illness, but what I like most is that it includes not only things NOT to say to someone with a chronic illness, but also suggestions for things to say. Hopefully we all have some idea of what not to say (one of my 5 drafts is on that very topic), but what might be helpful to say sometimes eludes us. I have recently realized with caring for my mom that I am not nearly as good at saying the right thing as I should be. She fell today. She falls often – that’s common with PSP – but it doesn’t get any easier to find the right words with each fall. Somehow “I’m sorry” just feels incredibly inadequate, especially when you hear the anguish in her voice as she tells me she’s fine. More on that in another post, assuming I get around to it.

I also find it interesting that 69% of invisible illness patients were told they had anxiety prior to receiving a diagnosis. Something in the medical community has to change, and soon. Another one of my current drafts🙂

Friends, take care of each other. Treat each other – both sick and healthy – with love and understanding. We’re all going through some shit.

round two…

If you’re a regular reader of this blog, you know that for the past six months I have helped to take care of my mom part-time. She was diagnosed with progressive supranuclear palsy (PSP), a degenerative brain disease in the Parkinson’s family, last October after years of showing symptoms. Six months ago, my mom was accepted into a drug study at UCSD for a new drug currently undergoing clinical trials. The study was originally for 7 months, and at this point she only had one visit left at the end of August when the study would conclude. However, she was recently offered the opportunity to participate in an extension which would prolong the study for another 12 months. So, my mom will come stay with me once a month, every month, for the next year. When the extension finally concludes, the whole study will have been a year and a half – three times longer than originally thought.

I’m pleased she has the opportunity to participate in the extension. Although the expectations are low, if anything is going to save her life, it’s this drug. But when I signed up for this, I did so under the impression that I can handle anything for six months. And I can…I have. But it hasn’t been easy, and I’ve given up a part of my life to do it. I work less, eat less, sleep less, socialize less, and somehow because of the time with my mom, I smile more, laugh more, say ‘I love you’ more.

white flowerI started 2016 with the intention of treating it as a rebuilding year.  Last year was difficult for me, physically and emotionally, and it takes time to rebound. POTS symptoms don’t improve overnight, and I need time to to try new treatments, exercise, methods…whatever I can do to get back to where I was. So I was okay with a rebuilding year. However, with trying to care for someone else, “rebuilding” has felt more like six months of unraveling. The dose of beta blocker I take has quadrupled since this time last year. It’s physically exhausting caring for someone else, but it’s also very emotionally stressful. I can’t get sick while she’s here – I have to be able to get her to the appointment. If I don’t, she’s out. I have to be hyperaware and try to anticipate any potential pitfalls. Keeping her safe becomes my obsession during the time she’s with me. Worrying about how to be a better caregiver becomes my obsession when she’s not.

The week after she leaves, I spend resting and trying to recoup. The week before she arrives, I spend preparing for her arrival and trying to make up for the missed work/family time/domestic responsibilities I postpone while she’s here. And in between, I do what I can to take care of my health.

It’s surreal being on opposite sides of the same coin – I’m sick, but I’m also a caregiver. I find myself making the same judgments I know people make about me, saying the same insensitive shit I hear, and then I catch myself. I know better than that. I should be better than that. She sure as hell deserves better than that. It’s a learning experience, and I have been surprised to learn I’m not nearly as good of a caregiver as I should be. As I could be.

…As I will be.

At the same time I both love and hate this experience with every ounce of my soul. I treasure the shared moments, and the small reminders of how precious life is. I love having the time with my mom, even if she doesn’t seem much like my mom anymore. It’s gut-wrenching caring for a stranger that used to be my mother. But every once in a while, I get a glimpse of who she was, who she still is behind the mask of illness. In those touching moments, I pull out a little black book I keep with me at all times and make a note of something she said, a moment we shared, because I know someday those little tidbits will become useful for her eulogy.sunset over mountains

That’s the part I hate.

This experience generates an array of unexpected emotions, like fear over whether her illness and mine are related, and whether this experience is merely preparing me for my own future demise; or gratitude for the strangers who look at my mom, without judgment, with only sympathy and understanding that, although they don’t know what she used to be like, they know she wasn’t like this; or anger, because fuck the people who don’t look at her like that; or selfishness, because this isn’t about me.

I made it through six months, I can make it through another year. And in a year, I will emerge from this experience, wearied and broken, but purposeful, and finally ready to rebuild. And hopefully a better version of the person I am now. We go in for the first treatment of the extension tomorrow, and our one year countdown begins. Ring the fucking bell, let’s start round two.

“Life is short and all we have to offer, in the end, is love.” – Steve Almond

Smell ya later.
– Linds


I often receive email from people who read my blog. Some ask questions, some share their story, some just like to vent – all are welcome. I have even made a few email/texting friends that way, which has been a huge unexpected bonus to writing this blog. You are welcome to email me anytime at I try to answer every email, so if you don’t hear back from me, resend it. I’m not an expert on dysautonomia/postural orthostatic tachycardia syndrome (POTS) and I’m not going to give you medical advice. However, I’d love to hear your story and have been told I make a pretty good sounding board.

With the various emails I receive, I start to notice patterns in the questions asked. I may, from time to time, address some of the frequent questions in a post (without mentioning any names of course). Some recent common questions are:

Q: During my tilt-table test, my heart rate rose (at least 30 beats per minute), but my blood pressure (BP) stayed the same. My doctor concluded that I don’t have POTS because my BP didn’t drop. Is that correct?

A: Your doctor is an idiot. I’m sorry – that was rude. I’m sure s/he is brilliant and kind. But, with all due respect, your doctor is an idiot.

blood pressure 115/98

maybe a little high

POTS has nothing to do with blood pressure. The diagnostic criteria for POTS is a rise in heart rate of at least 30 beats per minute within ten minutes of going from sitting to standing (in children it must be a rise of at least 40 bpm). Blood pressure may decrease, increase, or stay the same upon standing. I have seen mine do all 3 at different times. Many other symptoms are often found with POTS, including dizziness, lightheadedness, fatigue, blood pooling, headaches, nausea, pain, palpitations, brain fog, but technically the tachycardia upon standing is all that is needed for a diagnosis.

If your heart rate increased significantly upon standing and your BP remained constant, you still have POTS. Hun, if your doctor told you otherwise, it’s time to find a new doctor. One of the downsides of having a relatively new/unknown condition is that you will often know more than whoever is treating you. But don’t settle for a doctor who doesn’t even understand what you have.

Life is too short for bad sex, cheap beer, and doctors who are idiots. That’s my new motto. Write it down.

Q: My doctor said I might have POTS. But I don’t faint, and everything I have seen on the internet says fainting is a symptom of POTS. What gives?

A: Oh, friend. Dear friend. I could have written this question 5 years ago. This exact question. A cardiologist suspected I had POTS, but when I went home to look it up, I was convinced I didn’t. At that point, I had only fainted once and everything I read indicated regular fainting was a part of POTS. I’m a bit of a tech nerd, so let me tell you what I know about the internet. It’s good for two things: watching porn, and reading a bunch of shit that isn’t true.

Some people with POTS faint. Many don’t. I can count on two hands the number of times I have fainted over the past 7 years. If I have been standing for more than 90 seconds, chances are good I’m lightheaded. If you make me stand still for another 5 minutes, chances are good I will faint. Which is why you will never see me standing still for 5 minutes.

You may have POTS and never faint, or maybe you faint regularly. Like I said above, if your heart rate increases 30+ bpm upon standing, you have POTS. Congratulations! It sucks.

Friends with POTS, what are common misconceptions about POTS that you have heard?

“This very heart which is mine will forever remain indefinable to me. Between the certainty I have of my existence and the content I try to give to that assurance, the gap will never be filled. Forever I shall be a stranger to myself.”  – Albert Camus

Smell ya later.
– Linds

just an update…

I feel I owe you all a follow up after my last few posts. After having a difficult time for a few weeks, I finally started to feel a little better this week (assuming 2.5 day migraines don’t count). My mom returns tomorrow for her clinical drug test and will be here all next week, so the timing is perfect. I seem to have established a regular pattern where I push through my mom’s visit, feel awful for a while afterward, and start to feel better right as she comes to town. Wash, rinse, repeat.

As long as I can take care of her when she’s here and get her to her appointments, I don’t care how I feel the rest of the time. I thought I would share what I have changed, in case it’s helpful for someone else. As always, never start or stop any course of treatment without talking to your doctor first.

  • I doubled my beta blocker. I have been very resistant to increasing any medication. I still hold out long-term hopes that one day I will be medication-free, and increasing the BB is a big step in the wrong direction. I’ll worry about that once this is all over. Right now I’m focusing on the short term.
  • I started taking a multivitamin, iron and magnesium regularly.
  • dog

    he’s not very good at hide and seek

    One of my frustrations with the low-histamine diet is that it eliminates certain foods that provide the largest quantities of specific vitamins and minerals. Tomato sauce, spinach, bananas, oranges, and swiss chard are all on the list of foods to avoid, and yet they are all high in potassium. I recently begun drinking coconut water regularly. It tastes awful, but it’s very high in potassium.

  • I have ceased formal exercise (like going to the gym or riding my stationary bicycle), but…
  • I play with my dog more. It’s good exercise, because we chase each other and go on short walks. No matter how bad of a day I had, he always makes me smile, helps lower my POTS-related adrenaline rushes, and brings things in perspective.

    tweet from @tha_linds twitter

    true story

  • I started a meditation journal where at the end of each day, I write down something I’m grateful for. It doesn’t have to be something deep – in fact it’s usually not. For example, today I’m grateful for the twin turbo engine in my car. Because, man, is that thing fast. Again, it helps me focus on something besides my health and watching my mom decline.
  • Regular naps help me catch up on some of the sleep I’m missing at night.

My sole goal in life right now is to live my life such that when she passes away, I won’t have any regrets about whether I could have done more for my mom. Everything in my life right now is centered around that one goal.

During this visit, my mom will be offered the chance to participate in an extension of the drug study. If she declines, the study will end in 2 months. If she accepts, we will be on this rollercoaster for another 12 months. It will be a difficult year, and I’ll need all the help I can get. If you have any super secret “feel good quick POTS remedies”, please pass them on🙂

“Attention is the first and final act of love, and the ultimate dwindling resource in the human arrangement isn’t cheap oil or potable water or even common sense, but mercy.” – Steve Almond

Smell ya later.
– Linds

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