My Brain AVM: Winter and Accessibility

We had snow in my area yesterday. There’s no dodging it anymore: Winter is on its way. Winter changed a lot for me after my brain AVM surgery and stroke.

Content Note: Ableism, accessibility, brain AVM, call-out, stroke, winter

Close-up on a large shovel full of snow.. It's held by a man in a beige jacket, navy gloves, and jeans. Keyword: Brain AVM

Image Description: Close-up on a large shovel full of snow.. It’s held by a man in a beige jacket, navy gloves, and jeans.

I’m one of those annoying Canadians who would be perfectly happy with sweater weather all year long. Heat’s a seizure trigger, so humid Ontario summers make me nervous and uncomfortable. I’m not especially bothered by the cold weather in winter, but I don’t like snow and ice, especially since my brain AVM and stroke.

Like, I really don’t like snow and ice.

Especially when it accumulates – on sidewalks, on stairs, on wheelchair ramps, in banks that I have to step over to get from my ride to the sidewalk. Sometimes it accumulates because it’s falling so fast and hard that there’s no point in trying to clear anything or make surfaces  safe for walking until there’s a break in the onslaught, and it’s on those days that I don’t go out unless it’s necessary, and do what I have to do quickly so that I can minimize time on slippery surfaces if I must be out.

I know that there are days when it’s almost impossible to keep surfaces clear, which is why I’m so impressed by businesses that try, and why I’m more likely to spend my money in them. But if I have to be Accessibility Bitch with a business about the snow/ice on its stairs/ramp that’s obviously been accumulating for a couple of days or more…especially if I have to do it repeatedly….rest assured that not only will I stop frequenting that establishment if at all possible, I’ll also let people know why I did so.

Here’s why:

I Won’t Go Where I’m Clearly Not Wanted

I’ve said this before a couple of times in my post-brain AVM surgery years, but I think it bears saying again: Not keeping stairs and ramps clear in winter whenever possible says to me that I should probably look for another way to get what I’m looking for; if you really cared about what I have to offer, you’d make sure that I can get into your building.  So maybe I look for another business that wants my money, another volunteer organization that wants my time and experience, or another community group that wants my input.

I know that you don’t intend to send that message, but that’s the message I get: That what I have to offer isn’t as good as what a non-disabled person does, and therefore not worth the effort it takes to keep your entrances free of  built-up ice and snow.

That used to make me a bit sad.  But now, frankly, I’m over it. I know my worth, and if you don’t, that’s your problem. But your short-sightedness puzzles me, particularly when business is involved.

My money is just as green as anyone’s, after all.

This Isn’t Just About Me

I am a young(ish), moderately disabled person, yes; I’m not the “norm”. I am, however, living in a community with a high population of older adults compared to the rest of the province (according to Census 2016.) I actually sit on a committee of older adults trying to make my community a place where people can age well, as someone interested in accessibility issues, and the ability to get around safely in winter is definitely a concern that most committee members share.

It’s also a concern for parents with kids in strollers, and people who for whatever reason are a little unsteady when walking, and people with no mobility issues at all who are just walking a bit too fast to get out of the cold.

Here are some things to think about:

  • A wheelchair ramp that’s got snow and ice built up on it is of no use to anyone. It’s better off blocked off, in fact, until the people in charge of the ramp can commit to keeping it a condition where it’s safe for people to use.
  • When snow and ice enter the equation, anyone can fall. I was nineteen, in the days before the brain AVM surgery and stroke, fairly healthy and wearing good boots with lots of tread when I took a bad step in a snowy parking lot in Kingston and fell flat on my back. Luckily, I walked away with just my dignity bruised.
  • I’m really not as militant as I sound. If I bring concerns about an accessibility issue to you and you demonstrate that you’re willing to listen to me and take me seriously, I’ll likely go away singing your praises.  And if I see evidence of action based on our discussion – you’re aces in my books. But having to come back over and over is annoying for both you and for me.

Bottom Line

I don’t like writing posts like this, damn it, but I’m still a bit unsteady even with my cane, especially in winter, and there are many people out there who much less steady than I am and wish that more people were saying this stuff.

So I’ll keep saying it.

Just take care of your snow and ice so that we can get into your buildings. It’s not that hard.

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My Brain AVM: Thoughts on Pain

I’ve talked before about how I have a lot of privilege, considering that I had a brain AVM that required surgical intervention and that I’m now disabled. Part of that privilege is that the whole journey came with very little physical pain.  I’ve had some reminders of that recently.


Vector illustration - red grunge stamp with "PAIN" written in white letters. Keyword: brain AVM

Image Description: Vector illustration – red grunge stamp with “PAIN” written in white letters

Content Note: Chronic pain, stroke, brain surgery, dental work, friend death, Hurricane Harvey, Hurricane Irma, Hurricane Maria, Puerto Rico hurricane damage, Las Vegas mass shooting

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I got a terrible headache when my brain AVM first leaked and caused a hemorrhagic stroke in the middle of a job interview. I know now that my pain tolerance is pretty high, because I not only finished the interview (and got the job), I walked to the doctor’s office and then walked home. I sometimes get migraines, and it’s not the pain that sends me to the hospital (even though the pain certainly isn’t pleasant)…it’s that my migraines make me throw up, and after a while I have to get a shot of Gravol to settle my stomach enough to let me keep my seizure medication down.

But, like most people, I don’t like pain, and I’m glad that I didn’t experience much of it with my brain AVM and stroke. I had some awful headaches after the surgery to treat my brain AVM, but who wouldn’t have headaches after having their head opened?

My friend Jason, who had a stroke when he was a bit older than me (not related to a brain AVM; he was in a car accident) wasn’t so lucky. His stroke came with central post-stroke pain. He didn’t talk about it much, but his mother once told me that he almost always had intense pain in his affected hand. I don’t know if I could have dealt with that and stayed as positive as I have through my recovery.

I’ve had periods since my stroke where I’ve dealt with chronic pain. Specifically, I’ve injured my weak leg a couple of times, badly enough that at times even a short walk to town was too painful to think about. But the pain ended with rest, elevation, and ice.

Mouth and teeth pain is a whole different ball game.

Pain That Won’t Be Ignored

At the beginning of September, my teeth were sore – all of them, it seemed. My head was aching. My ear, which had been hurting on-and-off all summer for no reason that any doctor could find, was aching. I was pretty sure that I knew what was wrong, but a trip to my dentist confirmed my suspicions that I’d been grinding my teeth again, and needed to started wearing my mouthguard to bed at night.

“Why haven’t you been wearing your mouthguard?” my dentist asked,

“Because I don’t like it,” I said, feeling (and probably sounding) like a mopey five-year-old.

“You need to wear it, or this will keep happening.”

So I did. And when the headaches and mouth pain didn’t go away, I figured that it was just because I’d made my muscles especially sore, and went about my business. Until one day, when it felt like the side of my face literally exploded – I didn’t know that teeth could hurt that much, and with my head pounding and the stabbing pain in my ear, my dentist got me in for a same-day appointment. He armed me with prescriptions for antibiotics to treat an infected tooth and Tylenol 3s for pain control, and I went home and cried on the couch while I waited for the pills to kick in.

I’m now two weeks after a root canal, perhaps looking at surgery to remove wisdom teeth that have just broken through after not moving for twenty years, and still apparently grinding my teeth somehow without knowing it, because my mouth and/or head/ear is always hurting to some degree. I have a muscle relaxant that I can take daily to deal with the muscle pain caused by the teeth grinding, and if I take ibuprofen throughout the day I can usually keep the pain reasonably at bay. But when I’m home I often have a cold can of pop held to my jawline on the right side of my face, because…numb is good.

And sometimes I still cry, because even with the muscle relaxant, and the ibuprofen, and the cold pop can, everything hurts. And I really didn’t realize until this round of mouth pain just how powerless it makes you feel, to be in a lot of pain and know that there’s nothing you can do about it.  It’s lonely. It’s exhausting. I can see why having to deal with severe chronic pain drains people and makes them depressed. I can see why it makes them desperate.

I’m looking at people who have to deal with chronic pain with new empathy, and I have a renewed sense of gratitude for the privilege of getting through this brain AVM journey relatively pain-free.

Jason died a few years back from complications related to other injuries he sustained during the car accident. I miss him, but I’m glad he’s not in pain anymore.

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Pardon me while I get a little political.

Friends in the US are having a very difficult time right now – hurricanes, health care uncertainty, and yesterday a horrific mass shooting in Las Vegas. I struggled to find what I wanted to say about it, and then decided to leave words far wiser than any I could come up with…

…and ask you to please consider doing what you can to support humanitarian efforts in Las Vegas and in areas of the US affected by the recent wave of hurricanes, especially Puerto Rico.

Here’s a list of links:

Support for Victims of Las Vegas Mass Shooting

Support for Puerto Rico – Hurricane Maria

Support for Florida, Louisiana, Puerto Rico, and Texas – Hurricane Harvey, Hurricane Irma, Hurricane Maria

Portlight – Portlight was created specifically to provide emergency aid during weather disasters to disabled people whose needs might otherwise cause them to fall through the cracks. Portlight is helping with relief efforts for all hurricanes.

More of My Writing About Disability and Emergency Preparedness

Forgetting May 29th – My Stroke Story

I wrote this when I was hosted at Medium, because when I moved there I lost the page on which I’d posted my stroke story…but I thought I’d post it here again anyway. Enjoy!

Content Note: Stroke and Stroke Recovery, Arteriovenous Malformation (AVM), Unexpected Medical Problems/Surgery/Hospitalization/Disability, Brain Surgery, Privilege

Cartoon of a woman on the phone saying, "I got kicked out of the hospital today...apparently "Stroke Patients Here" didn't mean what I thought it did!" Keyword: Stroke

Image Description: Cartoon of a woman on the phone saying, “I got kicked out of the hospital today…apparently “Stroke Patients Here” didn’t mean what I thought it did!”

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 I realized two things last week:

  • The page that had my story on it didn’t travel over from from my WordPress blog when I moved to Medium.
  • May 29th came and went, again.

So as much as I don’t like talking about myself, I figured that I’d better put something up here on Medium about who I am and how I came to be here.

The story actually starts on November 7, 1999, when I had a small hemorrhagic stroke in the middle of a job interview in Parksville, British Columbia. I didn’t realize at the time that I was having a stroke; I thought that the sudden, intense headache was due to a migraine. I wouldn’t learn until that night, when I’d gone to the hospital because my neck was hurting and I was concerned that I had meningitis, that there was blood in my cerebrospinal fluid.

That’s bad, apparently. Bad enough that the hospital called my father in Ontario and suggested that he fly out. By the time he got there the next day, I was in a hospital in Victoria, and I’d been diagnosed with an arteriovenous malformation (AVM) in my brain that had started to leak.

AVMs, according to the National Institute of Mental Health are “abnormal, snarled tangles of blood vessels that cause multiple irregular connections between the arteries and veins.” AVMs can occur anywhere in the body, but brain AVMs are particularly problematic; they “damage the brain and spinal cord by reducing the amount of oxygen reaching neurological tissues, bleeding into surrounding tissue (hemorrhage) that can cause stroke or brain damage.”

My AVM had been with me since birth, but no one had any idea it was there until it announced itself when I was 22; because I’d not had a reason to have any imaging on my head done until it bled, no one had seen it. It would need to be treated, which could be done with radiation, embolization (inserting a special glue into the AVM via a catheter through the arterial network), or craniotomy (open brain surgery), depending on the AVM’s size and position. I could get treatment in Vancouver or Toronto. I chose to go back to Ontario to be treated at the AVM Clinic at Toronto Western Hospital. After looking at my films, the surgical team determined that with a 4% (non-cumulative) chance of bleeding each year, my brain AVM would almost certainly bleed again, and might cause damage next time. Their recommendation was to try and reduce its size with an embolization, and to then remove it via craniotomy.

Which brings us to May 29, 2000. Seventeen years ago.

I remember the night after the embolization surgery, but the days after the craniotomy are fuzzy. I’ve captured some of my first memories in Finger Spelling.

I remember the seizure that accompanied the stroke, a couple of days after the craniotomy, but I don’t remember a moment where I woke up and thought, “I can’t move my left side.” It was more a gradual realization that this heaviness was real and not going away — the doctors were evaluating my level of paralysis, and physiotherapists were coming in and tossing my arm and leg around, and sometimes people would adjust my arm because I’d moved and it was pulling on my shoulder because it had stayed where it was…

I needed help to sit up in bed, and help to lie down.

I needed help to get dressed and undressed.

Walking was out of the question. While the team tried to stabilize my seizures with IV medications, I was bedridden; the few times nurses got me up to sit in a chair by the window, I was exhausted within minutes.

Because I was now forced to use my non-dominant arm and hand, everything I did was painfully slow and inelegant: brushing my hair and teeth, eating, writing (when it was vital for me to do it).

I was in the hospital five weeks, and then I went to an inpatient stroke rehabilitation hospital. The transfer there was so stressful that I spent most of the first day vomiting. I yelled at my night nurse to leave me alone, because I was never going to walk again. I don’t remember that; I was told later.

Seventeen Years Later

I used to remember November 7 and May 29 every year, but now they tend to slip by me, unnoticed. They’re two more days where I do what I do: go to work, feed my cats, work on my writing, watch Colbert (taped; I’m trying to go to bed earlier), fool around on Facebook…

Some people call the day they had their stroke their “re-birthday” but that’s never made much sense to me. Nothing about me died to be reborn the day I had my stroke except some brain cells. I guess in that way I’ve kind of rejected the recovery movement as well, because I see so many people waiting until they’re “better” to live again, instead of constructing a life that they want to live as they’re getting “better”.

Not that there’s nothing wrong with working to make your weak side as functional as possible after a stroke, especially now that we know that the window for regaining function is much bigger than previously thought — after all, I’m still seeing very small gains in my hand over a long-term basis. But imagine if I’d sat around and waited to be sure I’d gained as much as I could in my left hand before learning to do things with my right hand? I would not be:

  • Living independently — making my own (albeit simple, but that’s okay — simple meals can be nutritious) meals, doing my own laundry and grocery shopping, taking care of my cats, keeping track of my finances, doing simple housework (I do have someone help me with housework), managing my healthcare
  • Working part-time in the community and part-time as a self-employed individual.
  • Travelling on my own — as close as Toronto (4 hr bus ride), as far as Mississippi (5 hrs by plane with a stop in DC on the way over and Chicago on the way back) and out to BC and back again by plane. Further with people with me.
  • Educating myself — Finishing up my degree in Psychology, completing the Developmental Services Worker diploma on campus at Loyalist College, completing technical writing training by distance from Simon Fraser University
  • Advocating for myself and other disabled people as an internationally-known disability activist.

Life happens as recovery happens, so might as well get prepared as soon as possible.

Dealing with Challenges

I still definitely face challenges. I was very lucky in that not long after I felt able to work, I got a great part-time job in my field that I found enjoyable and fulfilling. But I lost the job after few years because of funding concerns. Work has been difficult to find with my disabilities, and always part-time and low-security. I started writing the Girl With the Cane blog during a particularly long stretch of unemployment.

I’m learning that as I approach middle age, I’m not as resilient as I once was. I fell last winter and fractured my kneecap and I’m still experiencing a lot of pain. Several months later, I still can’t walk nearly as much as I’ve been able to in the past, which is very frustrating; not being able to at least walk to and from town and work like I used to feels like a big blow to my independence. I ask for help with transportation much more than I used to. I had a major seizure last September after being seizure-free for a few years, so driving is a few years off even if I could afford a car.

Even after 17 years, asking for (and accepting) help doesn’t come easily, but I work at it.

Canadian and Privileged

Despite challenges, I feel lucky to live in Canada, where my medical treatment and rehabilitation didn’t put my family into major debt and where getting income support and help to pay for my medications as a disabled person who couldn’t work was relatively easy (compared to what I’ve heard it’s like in the US). These systems aren’t perfect and I’ve heard real horror stories, but I’ve been fortunate.

Privileged, even — I’m white, straight, cisgendered, and able to pay my bills, with affordable health care (including dental, medicine and eye exams) with the means to access it. My family is supportive and loving. I’ve only ever felt unsafe a very few times in my life.

I’m very fortunate, and I try to always remember this as I do what I can to make the world better for those that haven’t been as lucky as I have. Some days it doesn’t feel like I can do a whole lot, but sometimes you don’t need to do a whole lot to make a difference in someone’s life. So I do what I can and hope it’s enough.

I’m looking forward to forgetting May 29 next year. 🙂

 

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Happy Fourth Blogaversary to Me!

So wow! I’ve been doing this for four years. That’s one of the longer commitments I’ve made since the stroke. And considering that I really only started this blog to keep me busy during a particularly long period of unemployment…well, I’m going to celebrate hanging around for this long.

Image Description: Keyboard, mouse, and coffee mug (all white), plus a plant in a white pot, sit on a workstation light green wooden desktop. “I Love Blogging” is also written on the desktop; the “Love” is represented by a blue heart.

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Especially since I could have blogged about a lot of things, and I chose to blog about disability…I think that’s significant. There were things that I needed to say. I’d written about disability before, in a (now out-of-print) book of personal essays, and what was in the book was what I needed to say about stroke and disability and recovery at that point, about six years after my surgery and stroke. But at that point, although my volunteer and professional experience in the disability sector had made me very capable of speaking about discrimination against disabled people, I didn’t know that this discrimination was called ableism, and just how insidious it could be. I could tell you that being called “inspirational” made me uncomfortable, and why, but I couldn’t talk to you about inspiration porn. I could talk about how environments disable people when they’re not accessible, but I couldn’t talk about the differences between the medical and social models of disability.

And I knew only the very basics about autism.

And the government considers me “trained” – I have a Developmental Services Worker diploma, which is the certification that government prefers that front-line workers possess in order to work with intellectually disabled people.

It’s been through the research that I’ve done for blogging here, the conversations with other disabled people, their families, and their caregivers with whom I’ve developed (mostly online, but in some cases quite close) relationships, that I’ve learned that, even after 20 years combined years of volunteer and professional experience of working with people with disabilities, that I had a world to learn…and took my first steps toward becoming more aware of how much appalling/icky/brutal/infuriating/insidious/none of the above (insert your favourite adjective)/all of the above ableism there is the world, and of the ways ableism was present in my thoughts and words.

It’s been quite a ride, and I thank all of you for reading what I’ve writing, for educating me, and for passing on my work. Onward into Year 5!

Also…

I didn’t write a Stroke State of the Union Post on the anniversary of my surgery this year (May 29). I tried – a couple of times. But I couldn’t get it to stop reading like a list of “Here’s what I can do now and what’s still an issue.” I know that people kind of like to hear that, but it’s not really what I wanted to focus on this year, the 15th anniversary of my stroke. I couldn’t figure out really what I wanted to focus on. Maybe…just the couple of important things that I’ve learned this year.

I’ve talked before about how I have trouble asking for help when I need it, for the things that I really do need help with. I’ve spent a lot of therapy time on that, actually. This year, even though it was difficult, I asked for help…sometimes with small things, some bigger things, and once for something that was ongoing and quite significant.

And, shock of shocks, the world didn’t end!

People seemed happy to help, and I really tried hard to believe that 1) They would tell me if they didn’t want to help and 2) That it’s okay, really okay, to admit that I can’t do everything, that I’m worthy of help when I need it, and that it’s okay to ask.

Obviously there are some issues here, and I’ve been trying very hard to work on them. I’m not sure where they come from – perhaps that awareness will come later.

I’ve learned about this year about chronic pain and its effect on a person. Some people experience severe pain after a stroke. I did not. I’ve never experienced any sort of chronic pain. But this year, after New Year’s, my left thigh started to hurt.

I didn’t think anything of it for quite a while. My niece and I had spent a lot of her New Year’s visit playing…playing with Gillian always ends up including “Hide and Seek” and building forts out of couch cushions and a lot of her jumping on me, and I love every minute of it, and there was plenty of opportunity to bruise my leg somehow. I was also falling asleep far too much on my couch over the holidays, watching Netflix on my new TV, and I was convinced for a long time that my leg was sore because I’d just “slept on it wrong.”

But in February, when I was still having pain in my thigh getting up from a seated position, and walking when I tried, I visited the doctor. X-rays showed nothing, and in March, with the pain getting worse and worse, I was referred for an MRI.

In Canada you can wait a while for imaging if you’re not an emergency case. In April and May I frequently could barely walk, and then the pain let up a bit for the nicer weather in June. By the time I had the MRI done a couple of days ago, the pain had faded, and is now fairly easy to live with.

But it’s given me a whole dimension to the empathy I’d previously felt for people who are living with any sort of chronic pain. It’s difficult to get motivated to do anything when pain makes it difficult to walk. I generally do a lot of walking at this time of year, but that’s been difficult. Not knowing what’s going on has been more stressful than I thought it would be. And this is localized pain, very mild most days compared to what a lot of people live with. It’s been an eye-opener, thinking about how other people must cope with much worse…and so gracefully. I don’t know how they do it.

These are some of the thoughts that have gone through my head this year.

I am finding it difficult to wrap my head around the fact that it’s been 15 years since I had my stroke, and don’t know what to write beyond that. More on this later, likely.

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My Brain AVM: Taking My Meds

October is Talk About Your Medications Month, and I’ve been thinking about medications…and my brain AVM and stroke…and being one-handed…and a bunch of stuff…

Medical personnel (the person is wearing blue scrubs and a stethoscope) of indeterminate gender, white, pours a variety of pills from a clear, amber bottle into his/her/their hand. Keyword: brain AVM

Image Description: Medical personnel (the person is wearing blue scrubs and a stethoscope) of indeterminate gender, white, pours a variety of pills from a clear, amber bottle into his/her/their hand.

I took an anti-depressant on and-off through my life before my brain-AVM and stroke, but nothing else consistently or long-term. Now that my brain AVM is gone, I feel like I keep a pharmacy in the house – I take two anti-seizure medications, morning and night, an anti-depressant at night, and Ritalin in the morning (plus vitamins, etc.)  Sometimes my pharmacy remembers to put my meds in bottles that I can open easily, but more often they’re in bottles with child-proof tops.

I tried to find a YouTube video of someone actually opening a child-proof pill bottle with one hand. I could only find one, and the person in it actually looks like they do it differently than I do. I grasp the bottle so it’s firmly in my hand, but so that my fingers are at the top to twist it, use my thumb and fingers the push the cap (and the bottle) down hard on a surface (I usually use my leg, but you could use a table) and then, still pushing down, turn the cap to open the bottle.

It’s easier to show you this, of course. The next time I have a visitor, I’ll get them to film me doing it, because after 14 years of doing this, it’s difficult to even explain how to do it.

Long Live the Blister Pack!

There are (arguably) easier ways to handle this, of course. You’ve likely seen Blister Packs, the cards with the ampules into which medicine is already poured, ready for you to punch out and take at the appropriate time. These are actually great, because they can allow people who otherwise might have trouble pouring their own meds to take them independently. An intellectually disabled person who might have had to live in group home or have had a staff person come in to a place where they otherwise live independently to administer medications each day can know by pictures on the card (like a sun, a moon, or a bed) which ampule to punch out when, and have that control.

Why don’t I use a Blister Pack? It’s never been recommended, and I’ve never felt the burning desire to ask, I guess. But I should remember to ask for meds in non-child-proof containers, because sometimes I get lazy and don’t put them on properly, and I have a cat that likes to knock pill bottles off counters when she wants attention. Neither of my cats have any interest in the contents of said pill bottles, luckily.

The other advantage of a Blister Pack is that you just have to look at to it know whether or not you’ve taken your meds. That sounds funny, because you’d think that you’d know…but these things get to be automatic, and when you live on your own and there’s no one around to confirm whether you did or not when you can’t remember because you’ve been on auto-pilot, it’s nice to know.

My Brain AVM, My Meds, and Random Stuff

Sometimes doctors ask whether my meds make me sleepy, because the anti-seizure meds tend to do that, and the dose for one of them is quite high. I can’t answer that anymore. I’ve always been sleepy, and I’ve forgotten whether it was different before the pills. Some days it feels like the past fourteen years have been a lifetime, and that I’ve forgotten what it was like before I knew I had a brain AVM.

When I first started working, sometimes I’d get doing something and forget to take my morning meds (which is okay for me to do every now and then, but definitely not a good habit to get into!) Now I set an alarm on my cell phone to remind me when I need to take them, because I’m kind of disorganized!

What are some tricks that you use to manage your medications? What about medication management is challenging for you?

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