Musings of a Dysautonomiac

Working on Being Awesome Without Feeling Awesome

autoimmune disease is a major health issue

Great post about autoimmune diseases (which may include POTS) from my blogging friend. Check it out:

autoaylie

Why aren’t more people talking about autoimmune diseases? We do hear pretty regularly about autoimmune diseases such as diabetes, lupus, and rheumatoid arthritis. But there are so many more. In fact, there are more than 100 autoimmune diseases, according to American Autoimmune Related Diseases Association (AARDA).

AARDA is “dedicated to the eradication of autoimmune diseases and the alleviation of suffering and the socioeconomic impact of autoimmunity through fostering and facilitating collaboration in the areas of education, public awareness, research, and patient services in an effective, ethical and efficient manner.” It is the only national non-profit organization dedicated to bringing a national focus to autoimmunity. For more information (or to donate to this important cause), check out their website at: https://www.aarda.org/.

AARDA recently put an insert in USA Today stating that autoimmune disease is a major U.S. health issue. In this awareness campaign, there were some alarming statistics:

  • 50 million…

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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

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.

Gynecologist
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

 

#ThisIsChronicIllness…

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:

dog

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.

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

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