happy POTSiversary to me…

I’m going to tell you a story about the woman in this photo.

 

woman in hospital gown

 

This was taken a little over six years ago. She woke up after a restless sleep, like every other night that year. After donning some yoga pants and a sweatshirt, throwing her hair in a messy ponytail, and staring at her makeup-less face in the mirror for a few minutes, she gazed silently out the window while her boyfriend drove her to the hospital. Her thoughts centered on uncertainty and apprehension, but above all….hope. Hope that once she reached the hospital, she wouldn’t be in pain, wouldn’t vomit all over herself, and wouldn’t lose consciousness.

Even more….hope that she would.

After filling out the necessary paperwork, she sits quietly while the nurse explains the details of the test. She stares intently into the nurse’s eyes, never letting her gaze falter, because she knows if she doesn’t appear confident and calm, she will be told it’s probably all anxiety.

She realizes the nurse has stopped talking and is waiting for her to ask questions.

“So, you’ll strap me to a table?” she asks.
“Yes,” the nurse responds.
“And then you’ll tilt the table.”
“To 70 degrees. Yes.”
“What happens if I faint?” she reluctantly asks.
“We’ll lower the table back down so you’re in the supine position.”
“And if I don’t faint?” the woman wonders.
The nurse doesn’t answer.
“If I have this postural ortho – whatever you called it, I’ll wish I did?” she presses further.

The nurse stared wordlessly into her eyes. After a few moments of pregnant silence, the nurse responds, “Let’s get you ready for the test.”

That look on the woman’s face in the photo – the one that says “what the f*ck just happened” – that’s because she’s wondering WHAT. THE. F*CK. just happened. About 20 minutes prior to taking this photo, her table was tilted back to supine, and the doctor came in and told her she has the postural ortho – whatever thing. She has no idea what that means, and she’ll spend 4 hours tonight on the internet researching it. She didn’t faint, but her doctor cut the test short after 10 minutes because her heart rate had more than doubled, and the diagnosis was obvious.

She not sure how she’s able to stand while taking this photo, because she can’t feel her legs. Her chest pain and palpitations have not subsided, and the dizziness prevents her from seeing her face clearly in the mirror. She’s not ready to look into her own eyes yet, anyway, for fear of what she might see:

Herself, broken.

She’ll text her ride and stumble out to the lobby at the hospital to wait. She will observe the others in the waiting room and realizes that, although she is surrounded by people, she has never felt more alone. The magnitude of the morning weighs heavily on her; she understands this may become a defining moment of her life. When the BF pulls up to the curb and honks for her to come out, she’ll hate him for a minute for not coming with, for making her walk out to the car. Even though they agreed that morning. Even though it was her idea.

He asks about the test, but words fail her.

“I have postural something-or-other,” she finally mutters. “Just drive.”

It will take her a week to tell her family. Twice as long to tell her friends.

Six years later, she sometimes still thinks about that day. It was an awful day. But it wasn’t her first, and she knows it won’t be her last. It was, however, the loneliest day of her life, and she hopes it will forever remain as such.

Someday she will write you a post advising how to deal with being diagnosed. But for now, she will just tell you this:

1. There’s no right or wrong way to feel. Whatever you’re feeling is valid. So feel it.

2. Start building your community from day one. It doesn’t have to be worse, but your life from this day on will never be the same. This of all days should never be your loneliest.

“The breaking of so great a thing should make a greater crack.” – William Shakespeare

Smell ya later.
– Linds

suicide survey…

Standing Up to POTS (an organization for which I serve on the Board) is partnering with counselors and suicide prevention specialists to tackle the issue of suicide risk in chronically ill populations.  We need patients with invisible illnesses (any, not just POTS) to complete a survey so we can develop better screening tools to identify the risk of suicide in patients with chronic illnesses.

The survey is completely anonymous and will not collect any personal information from you. At this time, we only need patients with invisible illnesses, not healthy controls. We’re looking for any invisible illness patients, regardless of whether you have ever considered suicide. The survey should take less than 10 minutes. If you are willing to participate, click here to take the survey.

We will publish results once the survey closes. Thank you in advance for helping us prevent suicide in chronically ill populations!

Smell ya later.
– Linds

stop comparing every illness to cancer…

I expect this post will be wildly unpopular, but I am going to say it anyway.

Stop comparing every illness to cancer.

The day I received my chronic illness diagnosis still ranks among the worst days of my life. It solidified my worst fear during the years of testing and misdiagnoses and uncertainty: that my life would never be the same. Friends and family rushed in with loving expressions and compassionate words. And, inevitably, as every newly diagnosed chronic illness patient will hear at some point, I was told those dreaded words which I have no doubt uttered in the past: “At least it’s not cancer.”

Cancer. The word itself sounds destructive. Hazardous. The kind of word we only dare whisper for fear it will set its sights on us next, and because voicing it aloud only reaffirms its power. It has become a curse word, an expletive. The “c-word”.

My illness is not terminal, and every single day of my life I am grateful for that. By reminding me that my illness is not cancer, you are trying to be uplifting. Reassuring. I get it, and I appreciate that. You are relieved I am not dying. I am, too. But when did cancer become the standard by which we judge every illness? When did we reduce every illness to two categories: cancer, and not cancer?

Suggesting that someone should be grateful they do not have cancer undermines the very real struggles they face with their illness. It implies that the excruciating pain, constant nausea, crushing fatigue, frightening memory loss, mobility impairment, and other symptoms are irrelevant, and all that matters is the name of the illness. And if the name is not “cancer”, it’s hardly worth discussing.

Telling me it’s not cancer quickly shuts the door on any open and transparent dialogue about my illness. How am I supposed to respond to that? How do I tell you I’m terrified when, hey, at least I don’t have cancer? Some chronic illnesses inflict the same low quality of life as terminal illnesses, just without a foreseeable end date. There is only so much pain and discomfort for so much time that one can endure.

When we begin to compare illnesses, we perpetuate a chronic illness community based on competition. My illness is better than cancer, but what about diabetes? Bipolar disorder? Congestive heart failure? Should I tell someone with the flu, “at least it’s not dysautonomia”?

Cancer is a horrible disease. We can all agree on that. The world will be a better place when we find a cure , but there are plenty of other awful illnesses out there as well, many of which can be as serious and devastating as cancer. If we reassure patients with noncancerous illnesses by reminding them they are fortunate not to have cancer, what do we say to someone diagnosed with cancer? “At least it’s not ALS”?

Comparing every illness to cancer also ignores the individual experience of each cancer patient. While we use the term ‘cancer’ to refer to the abnormal cell growth that has the potential to spread throughout the body, there are hundreds of different types of cancers, all with very different pathologies. Some cancers are easily treated if caught early, while others progress too rapidly to stop.

A pancreatic cancer patient has traveled a very different journey than my friend who had a cancerous mole removed, who walked a different road than my former co-worker who just passed from lung cancer. Which one is it you are glad that I am not?  Is it really better to have a serious, life-altering but non-fatal illness than a treatable cancer that goes into remission? Individual experiences with such a prolific disease cannot be lumped into a single category. Let’s not devalue their battles by trying.

Fuck cancer. But, fuck the other illnesses, too.

I do not know the purpose of life, but suspect it must lie buried somewhere in the threads that weave a community together. We have to build a better community, where all patients are allowed to share their story. We begin by quietly listening.

If you are searching for something meaningful to say to a friend who was recently diagnosed with a chronic illness, there’s nothing wrong with simply stating, “I am so sorry you are going through this.”

Without mention of the c-word.

“Perhaps all the dragons in our lives are princesses who are only waiting to see us act, just once, with beauty and courage.

Perhaps everything that frightens us is, in its deepest essence, something helpless that wants our love.” – Rainer Maria Rilke

Smell ya later.
– Linds

administrative updates…

Hi friends,

I’d like to tell you that the title for this post is some deep metaphor for the wisdom I’m about to bestow, but it’s actually very literal. I made some updates to this blog, and they were administrative in nature. How boooooooring.

Formerly, my blog was hosted by WordPress.com, which allows only minor changes. So, I decided to upgrade and self-host a WordPress.org blog. If you read this through an email, please navigate on over to www.dysautonomiac.com and let me know what you think of the design. I’m not sure if I will keep the snail image yet. I took that photo last year in my backyard, and I like the symbolism (I move slowly and often feel like I carry a huge weight on my back), but it seems rather bleak.

The wide margins annoy the crap out of me, so I’m working on fixing that.

One thing I do want to point out is the Antidote search portal on the left sidebar that says: “Let’s find cures together.” If you type in your illness and your location, you can search for clinical studies seeking participants for your illness. In the interest of full disclosure, I did receive an Amazon gift card for adding that search portal, but I have also already used it to search for studies for my and my mother’s illnesses. I am not able to see what information you enter, so don’t worry about that.

If you are a subscriber of this blog and are able to read this post, that means I transferred my followers correctly. I would really appreciate it if you would do me a favor – if you subscribe to this blog via email, please comment below (if no one has yet) indicating that you subscribe via email and received an email for this post. If you subscribe via WordPress Reader, please comment below (if no one has yet) that you subscribe via Reader and this post showed up in your feed. Thank you!

Edit: Thanks for all the responses! It seems my subscribers transferred correctly. 

“For small creatures such as we the vastness is bearable only through love.” – Carl Sagan

Smell ya later.
– Linds

conference videos…

Hi friends!

In my previous post about the POTS/MCAD/EDS conference I went to in December, I promised I would let you know as soon as the recordings of the speakers were available. The videos are now up, organized by speaker and topic, at the Children’s Hospital of Orange County website here.

Feel free to share that link with others who might be interested. If you watch any of the presentations, I’d be interested in hearing what you think! Come back and post your thoughts, if you’d like!

Smell ya later.
– Linds

conference recap…

I was really hoping to get this out to you all before the end of 2016, but I’m 23 hours late. I hope you’ll all forgive me. [P.S. HAPPY NEW YEAR!]

photo of ID participant badge
my super fancy ID badge

As you may remember, I attended the Connecting the Dots conference about POTS/MCAD/EDS in December and want to tell you a little about that experience. I believe the videos of the individual speakers at the conference will be made available early this year. I will post here once I hear they have been released.

Saturday afternoon featured talks by experts on mast cell activation disorder (MCAD), postural orthostatic tachycardia syndrome (POTS), and Ehlers-Danlos Syndrome (EDS). I’d like to share with you some of the notes I took. They were a jumbled mess, so I have organized them by topic, even if some were from separate sessions on different days. I hope you are able to make sense of them, and find them helpful. Items with ****asterisks are things I found particular interesting.

good tips.
good tips.

Below are my notes, but first, a quote from Dr. Chogle at the conference that is relevant here: “There is no standard treatment for anything in dysautonomia.” Unfortunately, not everything you read below is going to be helpful for you.

 

 

MCAD 

  • the number of patients diagnosed with MCAD is increasing
  • people with MCAD have a constant risk of secondary infection from surgery, sedation, etc.
  • the risk of drug overdose is significant
  • lack of support for MCAD – not generally “owned” by any specialty
  • too much mast cell activity can cause bony erosion breakdown
  • treatment not based on markers
  • common treatment:
    • H1 blockers (antihistamines)
    • H2 blockers
    • singulair
    • cromolyn/ketotifen
    • NSAIDS
    • new therapeutics are expected in the next 6 months, but could not give more information
  • avoid: IV narcotics, muscle relaxants, antibiotics, antidepressants
  • ****drug efficacy of H1 (and maybe H2, I can’t remember) blockers declines by 50% in 6 mos. If you take these drugs, switch types (i.e. fexofenadine – allegra, cetrizine – zyrtec, etc.) regularly
  • mast cells can be activated by psychological, not just physical, event

EDS – I have to apologize. Because I do not have EDS (or, at least do not have any reason to suspect I have EDS), I didn’t pay as much attention to this session as I should have.

  • the types of EDS classifications were first published in 2012, new classifications will be released in 2017
  • classic, hypermobile, vascular
  • tenascin X gene deficiency – easy bruising, MVP, alterations on both copies of genes
  • 1 in 100 have hypermobile EDS
  • vitamin deficiencies (especially iron and vitamin D) are more common in people on H2 blockers or proton pump inhibitors. This was interesting for me to learn. I, personally, have had problems with very low ferritin in the past (mine was a 3) and low vitamin D and always wondered why. If you’re on an H2 blocker or PPI, you don’t absorb some vitamins/minerals correctly.
  • studies have shown EDS patients have long periods of non-REM sleep
  • doctors generally wait until patient is at least 6 years old to diagnose EDS
  • EDS patients may require a slightly higher dose of pain medication because more sensitive to pain
panel of doctors
panel of experts

POTS

  • gravity displaces blood without counteractive factors – blood pools and less oxygen to brain
  • to counteract gravity, humans have:
    • well developed valve system
    • skeletal-muscle pump
  • in POTS, autonomic nervous system affects both of those, making it difficult to fight gravity
  • difference between vasovagal syncope and dysautonomia. In vasovagal, patient is completely fine in between episodes. In POTS, symptoms occur between episodes.
  • normal blood volume in legs is approx. 15%. In POTS, approx. 35%. Think about that – someone with POTS has more than double leg blood volume of a healthy person. That’s gravity and blood pooling at work.
  • studies are ongoing, but suggests for some autoimmune problem – single deletion in genetic code – autoimmune system attacks blood vessels and gut
  • recommend building up lower extremities and strength
  • no evidence of greater risk of heart disease, cancer, etc. in people with POTS, but no lesser risk either
  • counseling can be critical
  • a few people get all better, but most just get better
  • Dr. Grubb indicated that he’s not all that happy with IVIG for POTS.
  • treatment: first try pushing fluids & salt, then midodrine, then florinef.
  • pulmonary function may be impaired in dysautonomia due to mast cell or vagus nerve
  • stroke volume:
    • normal = 3 ml O2
    • peak exercise = 5x normal
    • exercise for dysautonomia = only 2x normal

Pain Management

  • EDS, POTS, MCAD & CRPS may all need pain management
  • treatment of proprioception:
    • compression garments (up to waist)
    • specific exercises
      • walking in water
      • stork standing
      • stand up paddle board
      • do it everyday – if you’re having a POTSy day, do a few leg lifts in bed
  • possible causes of headaches:
    • chiari
    • cervicogenic (from muscles)
    • TMS dysfunction
    • spontaneous CSF leak
    • cranio cervical instability
    • posture (see photo on right for info of why posture is so important)

      posture and head location
      with bad posture, your head imposes almost 4 times as much weight on your neck
  • ****people with POTS stick their head out more due to blurry vision, we tend to push head forward so it’s easier to read. Puts weight on neck, causes bad posture and pain.
  • dense foam padding (Ableware) can be helpful for pain – put it around pens, forks, etc.
  • introduce bracing slowly – 1 hour each day for a week, then 2 hours each day for a week, etc.
  • don’t lock knee when standing for a while (this one’s difficult for POTSies)
  • kinesio taping – leave it on for 3 days
  • **** for localized pain, topical medications are better
  • a swimsuit one size too small can serve as abdominal compression
  • for POTS:
    • stimulants not best choice
    • combo of ubiquinone (CoQ10) and L-carnitine helpful
    • take frequent breaks
    • low dose naltrexone (LDN)
  • Marijuana:
    • for pain, get low THC content, higher CBD content
    • doesn’t (shouldn’t) affect mast cells
    • better than narcotics for EDS
  • Exercise: progress very slowly
  • pain best treated as multimodal, multidiscipline approach, including counseling, massage, acupuncture, music therapy, meditation, physical therapy, etc.

The conference provided dinner for us Saturday evening, and I ate with a couple of my local POTS friends, and met a few new ones. I even had the opportunity to meet the friend of one of my blogging friends (whom I have never met, but hope to someday). Half way through the Saturday afternoon session, I felt like I had already heard all the information before. I even considered cancelling my hotel room, driving home that night and skipping Sunday. But once I looked over my notes, it dawned on me that I had learned more than I realized, and I stayed for the rest of the conference. I’m glad I did.

sunrise
view from my hotel room Sunday morning

“Any fool can know. The point is to understand.”
Albert Einstein

Smell ya later.
– Linds

(wo)man’s best friend…

One year ago today, my life changed. This handsome fella came into my life:

dog

Today is Fletcher’s one year adoption anniversary. I first came across his adorable face when searching a local dog shelter’s website. When I saw his photograph, I immediately fell in love with Fletcher’s golden eyes. We made an appointment to see Fletcher, but were warned by the shelter that he was extremely shy.

dog's faceShy didn’t even begin to describe him. He was petrified. Fletcher wouldn’t make eye contact, wouldn’t sniff us, wouldn’t even look in our general direction. I felt an instant connection with him, and while I’d love to tell you it was mutual, it wasn’t. He was terrified of me. Even after we brought him home, he would try to get as far away from us as possible for the first few days. His anxiety and discomfort was obvious. The shelter had warned us that he had lived on the streets for a bit, but it quickly became obvious that he had suffered abuse as well. He seems to suffer some lingering post traumatic stress, especially when loud noises or stick-like objects are present. Initially he was afraid of most people he met, and at his first few dog park visits he ran away from the other dogs and hid under a table.

dog playing with ball
he was also very underweight.

We set out to prove to Fletcher that we could be trusted by using lots of positive reinforcement and being patient when he showed signs of stress or fear. Fletcher slowly opened up to us and began to trust us. I remember vividly how it felt the first time he wagged his tail when I came home from work, the first time he let me rub his belly, and the first time he let me hug him. I know most of those come easily for most dogs, but with Fletcher they were hard earned. That made them all the more meaningful.

Having a dog with some PTSD isn’t easy. He’s exceptionally fearful of the rollator, or a broom, or laundry hanging to dry, or when our water dispenser makes a gurgling sound. When I accidentally drop something and cause a loud noise, he doesn’t get over it easily, even with lots of positive reassurance. And with my brain fog and poor circulation, I’m always dropping something. It can take 3 days before I can get him to go back in that room. With all of his anxiety and lack of confidence, he will never be a therapy dog.

He doesn’t know what postural orthostatic tachycardia syndrome (POTS) or mast cell activation disorder (MCAD) are. He has never awaken me at night when I get bouts of SVT or when my blood pressure drops. If I was to somehow go into cardiac arrest, he isn’t going to call 911. But he can tell when I feel shitty, and he stays by my side.

dog lying on arm
i melt when he sleeps on my arm or leg.

And, somehow Fletcher’s anxiety has been like therapy for me. Working with him, training him, helping to build his confidence and reassuring him when he’s anxious seems to help control the anxiety symptoms of my POTS. I think somehow when I calm him down, I’m inadvertently helping to calm down my autonomic nervous system.

He serves as a wonderful reminder that we don’t ever truly know what someone else has been through, and it’s not our place to judge whether someone else’s overwhelming fear of a lunchbox is rational. All we can do is rub their belly, scratch their butt, and love them unconditionally.

Sometimes I find Fletcher sniffing the flowers, or gazing off at the mountains behind our house. He constantly reminds me that I’m lucky to be able to sniff flowers or gaze at mountains beside him. I love that he’s existential, like his mama. I’m trying to help him to understand that with 30 minutes of reassurance and me by his side, there’s nothing he can’t do. Maybe he’s teaching me that with 30 minutes of reassurance and him by my side, there’s nothing I can’t do.

And, no matter how bad I’m feeling, how scared I am that something might be seriously wrong, when he lies next to me and puts his head on my thigh, I can’t help but smile.

Happy adoption anniversary, Fletch. I’m glad you’re my dog.

dog in snow

Although Fletcher would make an awful service dog, many people with dysautonomia do use service or therapy animals to help with daily life. If you would like information about service or therapy dogs, there’s some great information here and here.

Friends, tell me about (or show me!) your pets.

“The world would be a nicer place if everyone had the ability to love as unconditionally as a dog.”
― M.K. Clinton 

Smell ya later.
– Linds

chronically ill holiday guide…

Every year I post this guide to the holidays for loved ones of the chronically ill. Friends, I’d love to hear your suggestions/challenges for the holidays!

Happy Holidays!
– Linds

further down the rabbit hole…

It has been an interesting few weeks – the Cubs finally won the World Series, Donald Trump will be President, marijuana is now legal in California, and I have two “new diagnoses”, although I use those terms loosely, as one is not really new, and one is not really a diagnosis.

tweet from @tha_linds
i’m oddly proud of it.

For the one that is not actually a diagnosis”: My doctor’s assumption of being peri-menopausal was correct. What. the. f*ck. I’m in my mid (okay, late) 30’s, so this comes as an unexpected shock. I thought I had another 8-10 years. Blood tests showed that my lutenizing hormone (LH) levels, follicle-stimulating hormone (FSH), estrogen and testosterone are all off. Way off. I may also have polycystic ovarian syndrome (PCOS), because my LH is very high, and I have a high LH/FSH ratio. However, my testosterone level is low, which I guess is not typical for PCOS. As you might expect, there’s a huge emotional component to what this all means for me, as a woman. More on that in a future post. I started bioidentical hormone replacement therapy (HRT) last week. Friends, if you have ever taken HRT and are willing to (confidentially, of course) share your experience, please email me at lindsay@dysautonomiac.com.

For the one that is not actually “new”: supraventricular tachycardia (SVT). It was first discovered over 6 years ago, before my POTS diagnosis, during a 2 week holter monitor test. The doctor never said anything about it, and after the POTS diagnosis, I just assumed it was the same thing. My POTS cardiologist just confirmed it’s not. For me, it happens most often in the middle of the night, usually between 1-5 am. Suddenly I understand why I wake up often throughout the night. In SVT, the heart’s electrical system doesn’t work right, causing the heart to suddenly beat quickly for no reason. It’s different from POTS in that it’s not related to orthostatics (whether I’m standing), and it isn’t a gradual increase. With POTS, my heart rate starts at about 58 when I’m sitting, then as I stand it goes (very quickly) to 68, then maybe 84, then 97, then 105 (or higher), all within a matter of seconds. With SVT, it jumps from 58 to 105 (or higher) almost instantly.

Because I already take a beta blocker, I don’t need any new treatment for the SVT. These diagnoses may not seem like a big deal, and honestly, they’re probably not. I’m not worried about either. What worries me is how much deeper down the rabbit hole each new diagnosis takes me.

When you’re first diagnosed with a chronic illness, it feels like you stumbled down into a long, dark cave. At first it’s overwhelming, disorienting. You don’t even know which way is up. Eventually your eyes adjust enough to see the silhouette of your limbs, and you begin to walk, you hope, back towards the entrance. For a while you flounder in the dark, grasping at the walls to guide your way. You hear voices from the people on the surface and assume they must be close, but you can’t see the light.

You walk for what feels like miles in total darkness. Alone. Cold. Scared. It feels like the structure of the cave changes – the passage narrows, the walls close in, the pathway slopes – but you can’t be certain surrounded by blackness. Finally you think you see the smallest glimpse of light. You burst toward it at full speed, clawing at anything in your way, digging your nails into the earth to propel you forward. You’re tired. You just want to let the darkness claim you, but you know if you could just feel the warmth of that light, let it consume you, you could live in the light forever.

But with each new diagnosis, the ground beneath you gives, and you stumble deeper into oblivion. You continue in this manner for weeks. Months. Years. Weaving through the maze in the darkness. Occasionally you find a dim lantern or a matchbook that provides small beams of temporary light. But the light only helps to illuminate the hopelessness of the situation, making you feel more trapped, until one day you finally realize a large boulder has rolled in front of the entrance. You’re never getting out of the cave.

the moonSometimes you find part of the cave where the ground above you has given way, and you can feel the warmth of the sun. You hear the laughter of the people above, see them stepping over the hole and going about their life. In the beginning, they shout down to you regularly, “How are you doing down there? When will you get out?” You respond that there is no way out, you’re trapped in the cave. They shout back that you need a paperclip, or some marmalade, or a bible, as if those would magically lift you out of the hole.

After a while, the people on the surface stop shouting down. You’re less lonely, because you start to meet other people in the cave. You gather together to keep each other warm and to huddle around the small lantern someone found, forming your own community of cave dwellers. Together you long for life on the surface and dream about the sound of the wind rustling the trees, or the feel of warm sand beneath your feet. For a while, those thoughts invade your dreams. But eventually, you begin to forget what it was like on the surface and your few memories begin to feel like a vague recollection of something you once saw on t.v.

You begin to respect the cave, appreciate it’s narrow paths and rocky terrain. You hardly notice the bitter cold anymore. But each night, you and the other cave dwelllers lie beneath the small hole in the cave, staring up with astonishment into the star-filled sky that shines through, wondering why everyone on the surface isn’t doing the exact same thing when the view is so much better up there.

“There is a crack in everything, that’s how the light gets in.” – Leonard Cohen (RIP)

Smell ya later.
– Linds