Musings of a Dysautonomiac

Working on Being Awesome Without Feeling Awesome

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.

Sigh.

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

dysautoFAQs…

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 Lindsay@Dysautonomiac.com. 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

dysautonomia in the news: muscarinic receptors…

If you are ever interested in reading any news articles that mention postural orthostatic tachycardia syndrome (POTS) or dysautonomia, I have a Scoop.it page where I collect such articles. Some are stories in small town papers about a local teenager with POTS, others are scholastic journal articles.

Dysautonomia International, a non-profit that seeks to raise awareness for all types of dysautonomia, recently released a preliminary study conducted by Dr. Steven Vernino. The study tested POTS patients and controls for serum muscarinic receptor anitbodies (M1, M2 and M3). Muscarinic receptors are acetylcholine receptors that form G-protein receptor complexes in cell membranes. They are part of the parasympathetic nervous system (the part of the autonomic nervous system that controls the “rest and digest” functions like slowing heartrate, stimulating diegstion, etc.), and antibodies bind to the receptors it may cause problems with parasympathetic nerve messaging.

The results showed POTS patients had a significantly higher presence of M1 (87.5% of POTS patients had) and M2 (68.75% of POTS patients had) than the controls. Read more here. This could indicate an autoimmune component to POTS, although more research is needed. Researchers will be looking for more POTS test subjects at the Dysautonomia International conference this summer in Washington, D.C. I am not affiliated with Dysautonomia International in any way, so if you have questions regarding the study, please contact DI.

I wish I could go to the conference, as I would love to get tested for the antibodies, but unfortunately that’s too much travel for me to handle. Hopefully in a few years the study will be available to all of us!

#truestory

Smell ya later.
– Linds

the pedal for POTS party…

A brother/sister duo have been bicycling across the United States to raise money and awareness for POTS. According to the Pedal for POTS website, Ari and Alix have been riding their bicycles “from Florida to California for POTS, an often debilitating neurological disorder resulting in, among other things, reduced blood flow to the brain, rapid heart rate and chronic fatigue. POTS will eventually become a household name, and this bicycle tour will accelerate that process.”

Their ride concludes this Saturday, May 21st, 2016 in Ocean Beach in San Diego, California. If you’re in the area, come welcome them!

pedal for POTS

mutual assured destruction…

Lately I enjoy listening to podcasts on my way to and from work. It all started with the “Serial” podcast, but after I finished seasons 1 and 2, I found I missed having intellectual stimulation during my commute. Upon the recommendation from a friend, I discovered a few podcasts that I have come to love. One such podcast discusses short history topics.

Recently I listened to an episode on mutual assured destruction – or M.A.D. – that got me thinking. Mutual assured destruction is a term used during the cold war to refer to the ongoing potential nuclear threat between the US and Soviet Union. Each country stockpiled enough nuclear weapons to destroy the world, but refrained from using them because to do so was akin to suicide. Not only would one country wipe out the other, it risked obliterating itself – mutual assured destruction. MAD.

After listening to the podcast I came to the stark realization that taking care of my mom is starting to feel like mutual assured destruction. As you may remember from a previous post, my mom is participating in a drug study for her condition, Progressive Supranuclear Palsy (PSP), at a local university. So, approximately every ten days she comes to stay with me for a week while I take her to her appointments. We also play board games and watch episodes of Downton Abbey, which neither of us watched when it aired. We spend a lot of time together when she’s here – almost every waking minute. Our time together has become such a normal part of my routine that I find I don’t know what to do with myself when she goes home on off weeks. I start to miss her.

photo of a lake

the lake near my house

As wonderful as it has been to have time together, it’s also exhausting. My mom’s condition is declining, and as a result, so is mine. Or maybe it’s the other way around. Vice versa. I don’t know. It doesn’t matter. I don’t sleep well when she’s with me because I’m constantly aware that every noise I hear could be her falling. Fortunately all of her falls at my house have been minor, but it’s only a matter of time. I usually communicate for her, cook, clean, do laundry, and entertain her. I hold her arm and help guide her while she walks, but holding up an adult who weighs 15lbs less than I isn’t easy, and it’s an entirely different story when my lightheadedness kicks in.  Once I almost fainted while I was helping her walk. It was horrifying. Can you imagine what would happen?

Mutual assured destruction.

Taking care of another human being, even part-time, is a tremendous responsibility. Her well being becomes directly related to mine. If my symptoms explode, it destroys us both. If I can’t get her to her appointments, get her the drug, it’s over. While participation in this study probably won’t save her life, it could improve the quality. There’s no second chance.

My fatigue has again become overwhelming, to the point that when walking I’m never sure I will reach my target, regardless of whether my destination is 20 feet or 2,000. Naturally, I can’t simply drop my mom off curbside at the airport, I walk her in and get a wheelchair attendant to wheel her to her gate. Last time, I wasn’t sure we were ever going to make it out of the parking lot. Thankfully I got her to the wheelchair attendant, then lied down twice on separate benches on my walk back to the car.

Everytime my mom is here, I whisper to myself at least once or twice “I don’t think I can do this anymore.” And then I remember that I have to, that it’s not an option, that I want to, and that my health doesn’t matter right now so long as I can be there for her in a significant and meaningful way.

The pain in my legs and arms has increased. Maybe it hasn’t. Maybe it’s just more frequent. I don’t know. Maybe I’m just more aware of it now. Maybe trying to physically support an adult is taking its toll. I had some blood tests this week because this fatigue and pain are abnormal for me. Everything came back normal. Perhaps it’s just a POTS flare. Possibly I’m coming down with something. Maybe it’s part of the MADness.

photo of a courtyard with building in background

courtyard of one of the places we go for the study

I do my best to keep my symptoms from exploding while she’s in town. First I stopped doing any kind of exercising when she’s here. Then, I had to stop exercising at all, other than a short walk with the dog, even when she isn’t visiting. I started taking a variety of vitamins.  I don’t touch alcohol when she visits – not even a drop. I learned that one the hard way. I don’t ingest anything new, whether it’s food, drink or medication. I can’t have an off day. These days I have two kind of days: 1) those where my mom is in town, and 2) those where I’m preparing for her to be in town. There aren’t many “rest” days – at least not right now. Her disease is progressive, so one day she won’t be here anymore. I’ll rest when she’s not. I just hope I can take care of us both until then.

My mom is here now, and to be honest, I’m fearful that I wont be there physically in the way I need want to. I only need to make it through the next few days, and then it’s okay if I spend the next week in bed. Hell, I’ll spend the next month in bed. Just let me make it through the next few days. I need to prevent the bomb from going off before then.

Mutual Assured Destruction.

MAD.

This is my life right now, and I need to show up for it. Tell me how.

“No help,
Or hope of help existed.
So I resigned myself, picked up my father,
And turned my face toward the mountain range.” – Virgil

Smell ya later.
– Linds

 

 

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