pandemic

social distancing, self isolation, whatever this is: seven days in/pandemics are distracting.

• by kerri

A professor at the University of Virginia encouraged people to journal their pandemic experience. So, here it is. The new “pandemic” tag. Welcome.

Because yes, this is a thing now. While we are months into the existence of COVID-19, it was declared a pandemic on March 11. On March 13 we had our first 3 cases reported in Manitoba. The province of Manitoba declared a State of Emergency on March 20.

I am at the end of week 1 of social distancing, or not-sick-person self-isolation. Like many with chronic illnesses existing with degrees of immuno-compromise, as a person with severe asthma, I’m staying home. Even if you’re generally healthy with no underlying health conditions, we’re pleading with YOU to #StayHome, too. We aren’t learning our new vocabulary terms “social distancing”, “self isolation” and “self quarantine” for nothin’, here.

Unlike many, my post-pandemic, social distancing, self isolation life is perhaps not too distant from my regular work-from-home, very remotely from my coworkers who also work from home but in BC. Except post-pandemic life is regardless different. I don’t leave the house. I could go for a walk, but like, what if I see a cute dog I want to meet but how the hell do I stay six feet away from their human then? This is a problem of social distancing, and I lose self-control around doggos. Also, because nearly everyone else is social distancing, I’ve already had 2 virtual game nights, spent St. Patrick’s Day watching the Dropkick Murphys play to a camera crew in an empty venue (the 17th was the l went out: I had to get a Shamrock Shake from curbside McDonalds), and got to enjoy Drew Brown doing a basement acoustic concert.

Unlike others who are newly working-from-home and feel they have all this newfound time not lost in their commute, my days are the same except for watching the morning press conference from Justin Trudeau at 10:15 and then the one from the Government of Manitoba around 11 each morning. The pandemic news cycle is exhausting, but try as I might, I can’t avoid looking all damn day even though that’s what I advise others to do. I’m a news junkie and I have been since Donald Trump got elected because WTF? I scroll Facebook like the rest of us do, and read, and validate, and share. I try to share the good news. And I try to share the really good, and funny things arising of people’s social distancing.

Social distancing, self isolation, and self quarantine are making for some really damn good internet, I have to say. Like the sports commentator who no longer has sports to commentate on and instead is commentating on mundane life activities. These people who made a parody of If I Had A Million Dollars about COVID-19. Basically, I have learned this week that pandemics are distracting.

I’ve also been providing random observations, like I do, of the daily Trudeau press conferences. In case you’re reading this far in the future, recall that Sophie Gregoire Trudeau, also known as Justin Trudeau’s wife, has been diagnosed with COVID-19. This means that Justin is also self isolating at a distance in Rideau Cottage. (Justin, are we on a first-name basis? Thanks.) As such, the press briefings are outside.

Here is what I have observed so far. He still has a few days of self-isolation left as far as I can calculate, which means there will probably be some more things to comment on:

  • Friday, 03/20 – When Justin Trudeau has to do a press conference from outside his home due to self isolation, occasionally you hear a crow in the background!
  • Saturday, 03/21 – Justin Trudeau forgot to take out his earphones (Bluetooth) before he left Rideau Cottage. He began his press briefing, and then realized and removed them to put on the podium
  • Sunday, 03/22 – Justin Trudeau has to inform not one, but two reporters calling in by phone that their line is on mute. (There was also some banging during which he expertly paused before answering the reporter’s question, while simultaneously looking like nothing was happening.)
It is now a daily goal to record these odd observations for those who are not tuning in to the press conferences (also for Americans who need a more peaceful and even pandemic press conference experience). As well, I have been “determining” (ie. making up completely) which cabinet ministers are assisting JT with random tasks during his self isolation. So far Patty Hajdu (Health Minister) is wiping down the doorknob after he returns inside, Bill Morneau (Finance Minister) is helping him dye his hair which I cannot give any real rationale for, and when my friend Bill (not Morneau) asked whose job it was to be the crow executioner earlier today, I have assigned this to Joyce Murray, Minister of Digital Government, as the crow is clearly disrupting this process.
On weekdays, I usually watch the press conferences and go about my work life as normal. Archery ended the week before last, so a few days before we were in full on social-distancing mode. The last bus I took, on the way home from archery, had so many sick people on it, I got off two stops early and when I got in my mom’s car she informed me I was not taking the bus again till this was over. That was a Thursday. Friday the 13th was the day that everyone started buying up all the friggen toilet paper here. There was a line down the entire front of Costco waiting to get in (Facebook shows me, anyways). So Saturday the 14th we went to see the shelves. No toilet paper in sight, and that has continued in many stores around the globe.
Which is friggen bananas, in all realty. This is a respiratory virus. What do y’all need all this canned food and toilet paper for? It’s not a GI bug or a snowstorm. Now stores have begun to institute per person limits on many items, and in some cases are engaging in price gouging.
Also Jill in Ottawa spotted a guy with a cart at Dollarama full of rope, tarps and lightbulbs, so 1) I friggen hope he is building a shelter with those supplies and 2) the disconnect between lightbulbs and extreme prepper shelter building in a pandemic is perplexing.
Also speaking of doomsday preppers, I’ve been wondering how these people are doing. They’re surely laughing at the rest of us us (while medical professionals are or will be in desperate need of their masks).
Also I put this rainbow in my window today. I’m not sure if the kids are looking for rainbows or Easter eggs in Winnipeg’s treasure-hunt-social-distancing-go-for-a-walk game but I’ll add the easter egg soon.

Current stats in Manitoba: 11 cases confirmed, 9 probable cases, 0 deaths.
Canada has a total of 1430 cases confirmed, 41 probable cases, and 20 deaths.
STAY HOME.
(You can follow my day-to-day social distancing/self isolation updates on Instagram.)
ADHD + learning disabilities / asthma / health advocacy / politics / social media

$642.01 and then some.

• by kerri

I posted this on Facebook earlier today, after I left the pharmacy. After a few requests to make it public so friends could share, I did—and it seemed reasonable, 12 shares, 45 reactions and 59 comments later—many shocked that this happens in Canada—to post it on my blog, too.

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Do you know why Canada needs true national Pharmacare?
I do every day, but especially on days like today where I leave $642.01 behind at the pharmacy counter just to function for a month, for just 4 of my 7 meds. 

Did you know that despite being self employed and having two part time jobs, I can’t get insurance in Canada that covers medication for my preexisting conditions? Okay, actually I can, but it would cover $500 in medication: less than one tenth of my annual medication costs. Less than I just paid today. 

  • I can survive without Vyvanse for my severe ADHD, but I can’t thrive. That’s the expensive one, and it’s not an enhancer, just a sort-of equalizer. 
  • I require four different inhalers to manage my moderate-to-severe asthma. (One of those I’m on right now isn’t covered for asthma under Manitoba Pharmacare, so I pay out of pocket. Despite how well it works, I’ll switch it for another drug in not-winter to save money.) This is to BREATHE, which is not exactly optional.
  • Barring other radical intervention for my fibroids, I’ll need to stay on oral contraceptives for another several decades–and this is the only drug I may have a forseeable end date on. Despite my persistence, this is not optional. (And also, even if I were using them for contraception, does the province not realize paying for the pill for a decade is cheaper than probably just getting a baby born? Never mind making them a good human?)
  • Oh, and on top of the asthma medicine, I have allergic rhinitis, for which I consider the drugs “the optional ones”, but only because my sinuses aren’t super impairing–note, my doctors disagree with the optional-ness of daily nasal steroids, and support the use of singulair as an add on. 

I am productive and mostly healthy because I have these medicines. I’m lucky I can afford the deductible which is thrown at people like me in a lump sum at the beginning of the fiscal year. I will have another pharmacy trip or two where I leave a not-insignificant amount of money behind. Just because I can afford this now–with minimal expenses, living with my parents–doesn’t mean I’ll always be able to. 

Am I happy to have some provincial coverage? Yes. 
Do we need to do better? Unquestionably yes.

We need this for every person who needs to choose between food and medicine. For every person who cant financially handle a $500 emergency—40% of Canadians. For the parents who forgo their meds to let their kids play soccer–and for the ones who can’t play soccer because their parents need medicine. For every would be enterpreneur who could change the world but is stuck at a job because of benefits.

We need this to be a better Canada–that place where healthcare is a right because we take care of each other and we take pride in that. Except we stopped short, leaving patients who are still patients after they leave the doctors office often fighting to survive. We need more than “gap filling” solutions, we need Pharmacare for everyone, all the time. 

Canada, we can do better.

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Do you have a story about inadequate access to medication or medication coverage in Canada? Please SHARE IT so others know why this issue matters. One way you can share your story is to reach out to my friend Bill at FacesOfPharmacare.ca. You can also send your story to your Member of Parliament (find them here), and most importantly, VOTE in October for a candidate who supports a true national Pharmacare strategy for all Canadians.

asthma / guest posts

breanna’s asthma story: give and take

• by kerri

A couple months ago, I connected with Breanna through the Asthma Society of Canada’s Team Asthma Facebook page. Breanna has severe asthma, and is looking into bronchial thermoplasty as a potential treatment option–today, she’s sharing a bit of her asthma story here for asthma awareness month. Thanks Breanna!

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I am a 28 year old female and was diagnosed with mild asthma at the age of 19, to be honest never really thought much of it. I carried an inhaler when I remembered and used it as needed. In November of 2009 suddenly my asthma became severe. I realized that I had taken it for granted, started a controller inhaler and singulair. Unfortunately things didn’t improve and I started seeing specialist. I am currently on my third specialist, first one being an internalist and the last two being respirologists.

Every visit seemed to bring on new medication, new tests and frustrations. I went from going to emergency every 2 weeks to once a month and currently about every 6 weeks I have landed in emergency. I have been intubated, triedc-pap and many medications. Currently I am awaiting an appointment in Hamilton to see about possible bronchial thermoplasty. I have very atypical asthma, I cough continually and do not wheeze, however all tests point to asthma.

Asthma has taken so much from me, I am currently on disability from my job, it has taken some of my friends, some of the sports I played and activities I loved such as camping. However asthma has given me so much, I found out who will support me through all the frustrations and doctors appointment. It has also given me a new appreciation for those who strugglewith chronic illness.

I have made new friends and a new support system. As I am not working I am able to help friends out when I am feeling well and also slowly exercise to try to build up my lung tolerance. I am also able to take some university courses through distance education.

Asthma is a difficult disease it takes and gives and not many people understand the severity of the disease. On World Asthma Day I hope people take a chance to learn and educate themselves about the severity of the disease. It is even important to learn about triggers, I react strongly to scents, chemicals, smoke and weather changes. If you see me covering my mouth and hurrying away from where I am, please look at the amount of scent you are wearing.

Asthma is now a part of who I am but it does not rule my life.

–Breanna Harms

asthma / badassmatics / guest posts / health + fitness

from rebellion to revved up: clare’s story.

• by Awesome Guest Blogger

When encouraging people towards living more active lives, I always try to stress that there is NO positive change that is “too small”!  I find people really minimize their accomplishments if they are starting slowly, and this is really unfortunate because small steps can lead to big change AND show others that anything is possible . . . and everybody has to start somewhere!

Today, my friend Clare from the UK [who uses all kinds of UKisms. I am a fan] shares her story of her journey with severe asthma and a downward spiral of negative choices with profound negative impact on her health . . . and her recovery.  Her recovery lead to the motivation she has found to keep moving forward with exercise following rehabilitation for steroid-induced myopathy [extreme muscle weakness/wasting]–her dog, Pip, and a marked improvement in her asthma!  Her journey began through walking: an activity that seems deceivingly simple . . . and has helped her go farther than she’d ever dreamed!

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clare%25201.jpgI have had asthma since I was small. I am now 27 and I’d love to say it hasn’t had an impact on my life at all but it’s basically dictated most of my life.

From a young age as well as asthma attacks I also had epileptic seizures frequently. I always had an inhaler on or around me and relatives also had inhalers kept at their houses for when I stayed. One of my earliest memories from childhood is not a happy one playing, it’s of me sitting in my buggy unable to breathe, my mum giving me ventolin syrup and yucky intal. Most memories seem to involve a time of fun times being cut short by an asthma attack or epileptic seizure. Apart from that I was quite a normal little girl!

I had lots of time off school. In my last year of primary school I had 6 months off school for repeated pneumonias and lung collapses that left me very ill in hospital. After that episode every cold or viral infection had me ending up in hospital. The attacks just got worse and worse, I began to need more and more drugs to control them and was often hooked up to IVS for a long time. At the age of 10 my consultant decided a home nebuliser was the only way forward. It didn’t help really just made me more reluctant to go to hospital. I could have nebulised steroids via it but that didn’t really help much. All through my teens it continued with me ending up in hospital every few weeks/months with a bad attack. My epileptic seizures had thankfully stopped so I was glad of a reprieve from them.

I just wanted to be like my friends and at the age of 15 rebelled big style. I tried smoking and would regularly get drunk on a school night and sometimes joined my friends in smoking weed staying out till all hours. I continued to have regular attacks, and in between my asthma never let up—I was constantly attached to my neb but hated to say I was feeling ill, so I’d wait until I could take no more before reluctantly asking my mum for help, I just hated the attention. One day just after I had started my last year in senior school I woke up having an attack, what was different was this one came on so quick, and within minutes of the ambulance crew arriving I was unconscious and had stopped breathing, my heart slowed down . . . if it wasn’t for the prompt action from the crew I’d probably gone into full cardiac arrest. When I woke up I was on a ventilator in ITU [editor’s note: this is what our friends across the pond call the intensive care unit].

I was in hospital for a month recovering, I was so scared at first to go home and that it would happen again that I kept making excuses not to go home, eventually they realised and I was able to talk through what had gone on and any worries I had. I wasn’t home long within 2 weeks I was back in hospital with a very bad attack that needed very high amounts of steroids, it lasted a long time and I was in bed for 2 weeks. That coupled with the high amount of steroids gave me steroid myopathy. I couldn’t walk at all it was quite scary, I went to get up after being in bed for so long and my legs just could not take my weight, they wouldn’t do what I wanted them to do. I had various neuro tests and finally an EMG revealed very weak and wasted muscles in my legs. I had intensive physio, at first I could only stand up straight using a special standing frame with the physio, we then after weeks of hard work moved on a rolator frame, basically a Zimmer frame. I couldn’t go home as we had too many stairs and I was too weak. I had missed so much school it was decided I’d fall back a year so whilst in hospital I started to attend a special school for people with problems. To cut a long story short I was in hospital for 6 months having physiotherapy. It was very strange being back home after so long! Due to the myopathy, for a while the doctors were reluctant to give me any oral steroids, if I needed them they would just hit me with tons of reliever and IV aminophylline.

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I finally left school aged 18, college wasn’t for me trying to be independent I moved out of home aged 19, I hated the fuss. I got a job as a care assistant, my long term goal was to become a nurse. I worked for 2 and a half years, struggling into work every day. I did have a bit of a reprieve from the life threatening attacks for about a year, no hospital admissions for a year! It didn’t last long, work understood when I was poorly I’d be off for quite some time. Then in February 2005 an attack that didn’t get better, all IV drugs failed I was getting worse they took me to ITU and I had to be put on a ventilator again. My family were told to prepare for the worst. After 10 days ventilated I pulled through, recovery was tough. I was in hospital for 6 weeks. I couldn’t return to work, just getting out of bed left me gasping for breath.

I got depressed not being able to work, I piled on the weight. The longer I was off the more scared I got, the more depressed I got, I lost all confidence and hated going out. I used a mobility scooter when I was brave enough to venture outside. Asthma did that to me! Still in and out of hospital the doctors didn’t know what to do with me. For 3 years I was a recluse, the safety of my flat was comforting. I stopped taking some of my medication, what was the point it didn’t seem to help. Around this time I also found Asthma UK, I thought I was alone in my suffering, suddenly I found all these people going through the same! In September 2008 I was in hospital on IV drugs so long and unable to get off them without getting poorly again, I was started on sub cutaneous Bricanyl. 4 months in hospital with 2 weeks at home. I was now attached to a syringe driver 24/7 but once I was home and had recovered for the first time in years I felt better!

My symptoms had improved; I could walk again without gasping for breath and needing a nebuliser. Feeling better I also sought help for my depression,

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finally revealing how down I felt. I was put on anti-depressants and within months I was slowly feeling like my normal happy self. I enrolled on an Open University course, went on a diet and started doing some gentle exercise. I got a dog and he helped me with my recovery. I had to go out to walk him! The walks got further and further, the weight was dropping off and I didn’t have a hospital admission for 9 months. Unfortunately a cold turned into a nasty attack whilst on holiday in Scotland, I was very poorly in ITU. I recovered quickly and was soon back to walking and losing weight.

2 years on I have lost 7 stone [editor’s note: 98 lbs! GO CLARE!] and have completed 2 open uni courses. It’s been over 6 years since I had to give up work and now I finally feel ready to get back out there! I’ve been told not to rush things, so I’m not. I am currently looking for work but have a voluntary job 2 days a week at my favourite charity, Asthma UK! I love it and am learning so much. It’s been a great way to ease me slowly back into the world of work. I exercise regularly now, I walk 3 miles every day and am constantly out and about doing something, a total opposite to my once reclusive self, who would sit and watch TV all day eating rubbish food hiding from the world. I don’t even have a TV any more—who needs one when there’s so much of the world to see and more interesting things going on! If I’m bored I’ll go for a walk. I love exercise now! I wouldn’t have said that a few years ago, I would do anything to avoid any form of it! I know my weight and lack of exercise didn’t help my asthma, I’m determined not to get like that again.

Thanks to the right treatment and regular exercise for the first time ever I feel like asthma is not dictating my life. I still require a large amount of medication and have daily symptoms my lung function is still only 60%, to some I might not appear controlled but for me this is the best I have ever felt. I have had some admissions but they are not as bad and I seem to recover more quickly. My last one was Christmas 2010. I had not been in hospital for 6 months and was on a roll, the week before Christmas I got a nasty chest infection and had to spend Christmas in hospital. Not the first time! And now I’m whole year out of hospital! A little lie there I had a brief admission to get off my subcut Bricanyl in August, which went very smoothly and I am now line free!

Who knows what the future holds but while I’m enjoying this spell of good health I’m determined to make the most of it!

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Thanks for sharing, Clare!

Clare’s story has also been featured in That’s Life! magazine.  Clare lives in the UK with her dog, Pip, and is studying Health and Social Care with the Open University.  She is a volunteer with Asthma UK, the UK’s leading non-profit benefiting people living with asthma.  Clare blogs at Clarebear’s World, sharing her story of getting back to work, fitness, school, asthma, fun stuff, and life!  You can also find her on Twitter.