Musings of a Dysautonomiac

Working on Being Awesome Without Feeling Awesome

understanding invisible illness…

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. 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 similar, 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. In fact, 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. 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.

“…So I resigned myself, picked up my father,
And turned my face toward the mountain range.” – Virgil

Smell ya later.
– Linds

 

 

uncontrolled…

Anyone who has met me wouldn’t be surprised to hear that I think I’m a bit of a control freak. It probably then doesn’t come as a surprise to hear that I like having control over my body. Having postural orthostatic tachycardia syndrome (POTS) tends to throw the occasional wrench is my well-oiled wheel of bodily control. Unfortunately, as I recently discovered, so does stopping certain prescriptions.

About ten months ago, I stopped taking birth control pills. For a control freak, this was a huge mistake. Colossal.

my pup

the adorable granddog

Mom, don’t get too excited – you’re still relegated to sharing photos of your adorable “granddog” while all your friends show grandkid photos. Stopping the pill had nothing to do with trying to get pregnant, but instead had everything to do with a fear of blood clots. As you may remember, I previously mentioned having a lot of leg pain, numbness and tingling in the past year. I’m already quickly approaching the age cutoff for safely taking the pill, and my circulation issues with POTS don’t help the situation. All of that culminated in a momentary lapse of reason where I panicked and decided to stop taking the pill.

POTS symptoms tend to worsen, sometimes drastically, during certain times in a woman’s menstruation cycle. For this reason, many female POTS patients take birth control to help control symptoms during that time, and skip periods if necessary. In fact, I first went on the pill eleven years ago to help with hormonal migraines. And, I loved being on the pill. It made a huge difference in my migraines by being able to control my hormone levels. It cleared up my skin, although I’m fortunate that I never had bad acne. And, it made my boobs a little bigger which, let’s be honest, was reason enough to take it.

I loved having that amount of control over my body.

So, naturally I expected that I would relinquish some control by stopping the pill. At the very least, I thought my migraines would become more frequent. To my surprise, they didn’t. In fact, the migraines have all but disappeared. My doctor warned that I may have irregular periods for a while, and I would probably lose a few pounds. Those were the only warnings I was given.

I wish someone would have prepared me for the shit storm of chaos that was coming. If you’re planning on stopping birth control pills anytime soon, I hope this post will help you understand what could (but not necessarily will) happen.

Pros:

I noticed a couple of “pros” when I stopped the pill, although whether they really were benefits its open to debate.

  1. Like I said above, my migraines improved dramatically. Super sweet.
  2. I lost weight, which by itself isn’t bad, but I lost a lot of weight, without trying. I ended up dropping about 15 pounds. I’m already on the low end of normal weight for my size, so losing 15 pounds was too much. All of my pants now look like mom jeans, and I’m too cheap to buy new ones. There could have been something else going on to cause the weight loss, but if so, I still haven’t figured out what.
  3. It has made me…how shall I put this…do you watch the tv show Friends? Have you seen the episode where Rachel is telling Joey about the problem she’s experiencing with being pregnant? And how she’s “erotically charged?” That’s me. That’s another effect of going off birth control pills. It’s bad. I think about sex all the time. Yes, even right now. If I weren’t typing on this keyboard right now, I would probably try to hump it. Is this what it’s like to be a man?
funny ecard

true story.

Cons:

  1. Acne. This one was minor, but still unfortunate. I thought the only awesome thing about being in your 30s is that you DON’T get acne.
  2. Painful nipples. I think we’re probably all trying to pretend that I didn’t just say “nipples”, so I’ll just leave it at that.
  3. Depression. I would go from being totally happy one moment, to almost suicidal the next. It would come out of the blue and only last for a few minutes. Fortunately I was able to recognize it and control it, but it’s frightening how quickly my mind could go from loving my life to wanting to die.
  4. Hot flashes. I often have temperature regulation difficulties because of POTS, where my torso will be extremely hot, and my extremities will be freezing. This was exacerbated, tenfold. I’d be shaking and sweating at the same time. I was always extremely uncomfortable.
  5. Shrinking boobs. My boobs got a little smaller, although the girls weren’t big to begin with. Not a huge deal, but if I’m going to be horny all the time and want to constantly shove my boobs in the BF’s face, I wouldn’t mind if they were a little bigger.
  6. Hair loss. This one was kind of traumatic. I lost a lot of hair, like over 1/2 of all my hair, all over my body. Hair loss is common in many chronic illnesses, so I will devote an entire post in the future on hair loss. The shedding finally started to slow down after about 8 months, and I’m finally starting to regrow hair now. I had my thyroid tested and everything was normal, so I think it really is just from stopping the pill.
  7. Chest & throat spasms. As the spasms feel like they originate in my lower throat, I again thought it might be my thyroid. It again wasn’t. It could be mast cell related, but it started around the same time.
  8. Fatigue. I already suffer from fatigue due to POTS, but for the first couple of months after stopping birth control pills I was like a zombie.
  9. Irregular periods. I’m afraid that talking about it is going to make all of our periods sync, so hopefully this one is self explanatory.
  10. Insomnia. I could fall asleep fine, but would regularly wake up and be unable to fall back to sleep because I couldn’t get comfortable. See #4.
  11. Headaches. While my migraines decreased (which is AWESOME), non-migraine headaches increased tremendously. I now nearly always have a headache. That’s still better than the migraines.

So, in short, stopping the pill turned me into a pimply, depressed, sweaty, sleepless, hairless mess, but a pimply, depressed, sweaty, sleepless hairless migraine-reduced mess that wants to do it all the time. The BF doesn’t know how lucky he is.

Getting off the pill has been such a nightmare that at one point I considered going back on. It made every single POTS symptom worse. However, all of these effects would return once I finally decided to stop taking it, and I can’t take the pill forever. Better to just ride that shit storm now, and hopefully not ever have to go through that again. Most of the above effects are improving, but it has taken almost a year.

It is certainly possible that you could stop birth control pills without any side effects – many women do. Just know the risks, and be prepared to relinquish a little control.

Ladies, have you had any issues with synthetic hormones?

“First, think.
Second, let go.”
– The Universe

Smell ya later.
– Linds

job interview…

Recently a friend and I were discussing job interviews and the ridiculous questions asked during such interviews, such as being asked to list your weaknesses.  Just once, I’d love to hear someone answer honestly, like “I’m a dirty motherfucker”, or “I don’t work well with others because I’m mean and I smell funny.” However, the common strategy is to present weaknesses that can be turned into strengths, such as “I’m too dedicated to my work”. This conversation sparked thoughts about weakness on a more personal level.

In the job of life, I don’t doubt that my greatest weakness is postural orthostatic tachycardia syndrome (“POTS”). Sometimes I feel it holds me back from greatness, from climbing mountains, both literally and figuratively. Certainly I don’t mean to suggest that POTS is my only weakness, just my greatest. However, I have never been able to switch lenses and view it as a strength. How does kryptonite become an asset? I supposed I could argue that being tired all the time has turned me into an excellent napper. Or, that brain fog makes me rather entertaining with my nonsensical ramblings. But that’s not strength. I crave that unwavering strength buried deep in your core that you have to reach down and sink your claws in to pull it out. The kind of iron pillar upon which your identity is anchored.

You know what I’m talking about.

And although I have searched, I can’t find how to turn this weakness into a strength.

My mom was in town to visit last week for testing. As you may remember, I have previously mentioned that 2015 was a particularly difficult year for me, for many reasons, some of which I haven’t shared. I hope you don’t mind if I share one now.

A few months ago, my mom was diagnosed with a very rare illness called progressive supranuclear palsy (PSP). It’s a degenerative brain disease like Parkinson’s Disease, but if given the choice, you’d choose Parkinson’s 10 times out of 10. It’s like Parkinson’s evil cousin.

I haven’t shared my mom’s diagnosis with many people because I’m still struggling to make sense of it. I’m already prone to existential crises, and this one’s throwing me for a fucking loop. My mom has always been the healthiest person I know, so her diagnosis serves as a harsh reminder that I don’t understand how the world works.

This blog was never intended as a means to discuss my personal life outside of illness, but instead was started to provide a glimpse into a life changed by illness, philosophize about the meaning behind both, and to connect with others in similar situations. I don’t intend to change that, but I hope you will bear with me as I discuss my mom’s PSP in the occasional post as it effects my illness.

We’re trying to get my mom accepted into a clinical trial for a new drug to treat PSP. Luckily, the center conducting the trial is located here in southern California, so last week I took her to a handful of prescreening tests to determine her eligibility for the study and am happy to report she was invited to participate. Over the next 7 months, she will come here regularly as part of the study. It was wonderful having her stay with me for a week, but it created an entirely new role for me: that of caregiver.

As my mom’s physical control and cognition declines, I’m humbled by the opportunity to help her. Taking care of another  human being has to be one of the most difficult jobs in the world (shoutout to all you moms out there!), but also one of the most rewarding. I admit to being ignorant of the purpose of life, but suspect it must lie buried somewhere in the threads that weave a community together. After all, none of us is an island.

However, I have serious reservations about how good of a caregiver I can be when I, too, occasionally require caregiving. How am I supposed to get a wheelchair for my mom at the airport when I require a wheelchair to roam the airport, too? How do I have her sit down and wait while I stand in line at the testing center or pharmacy when I can’t stand for long? Being a caregiver requires mountains of energy that I don’t have.

I have serious reservations about whether I can do this, and what I can possibly offer her. But over the past week, I have come to the realization that through my experience with POTS, I might have something to offer that other friends and family cannot.

POTS and PSP aren’t the same thing, and I don’t mean to trivialize PSP by suggesting they are. They’re not. PSP is a million times worse and my experience will never compare to the gravity of hers. I will never be able to guide her through what it’s like to have PSP.

But I am in a unique position to be able to advise my mom about what a punch biopsy is, how to prepare for an MRI, how to navigate the medical and insurance industries, or what to expect from an infusion, or where the heartache over a changed life is rooted. My weakness has allowed me to be transparent, to talk openly and honestly about how fucked up and beautiful and harrowing life is; to commiserate over what it’s like to be a prisoner in your body; to share how illness doesn’t give a fuck who you are or what you wanted to do with your life or where you thought you’d be in 10 years; to discuss how to traverse the stages of grief and come out on the other side, broken and steadfast and beautiful, and more your true self than you have ever been.

And, yes, how to find the strength in weakness.

I still don’t know that POTS is a strength in my new role as caregiver, but I think I might be the right person for the job.

“You don’t have a right to the cards you believe you should have been dealt. You have an obligation to play the hell out of the ones you’re holding.” – Cheryl Strayed

Smell ya later.
– Linds

POTS webinar…

Howdy! I just wanted to let you all know about an upcoming webinar featuring Dr. Grubb (who is like a rockstar in the POTS world) tomorrow evening. I believe the webinar is primarily about POTS with Ehlers-Danlos Syndrome (EDS), however, you may still find it interesting if you don’t have EDS. I don’t have EDS and still plan to listen in.  The details of the webinar are below:

DATE: Tuesday, February 16, 2016 at 7:30-9:30pm, EDT
TOPIC: Postural Orthostatic Tachycardia Syndrome (POTs)
PRESENTER: Dr. Blair Grubb

Click here for more info.

I know I’m a day late for Valentine’s day, but still want to express my gratitude for each and every one of you and the time you spend reading my blog. Friends, I love you like I love saline.

love saline

 

“When all your desires are distilled you will cast just two votes: to love more and be happy.” – Hafiz

Smell  ya later.
– Linds

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