Editor’s Note: I often advocate for not just my daughter’s health and safety, but the general diabetes community as well. This post focuses on my personal experiences and beliefs and indeed includes my educated opinions derived from thorough research from sources I’ve listed below. Many others who do not know me well often feel entitled to their own opinions – not based on science, on my social platforms. That’s only rarely acceptable if we can both actual learn something new and valuable from a healthy discussion. I am tired and it’s time I feel heard. This is where my mental health journey begins. I hope more people will learn to listen with intent and empathy. Those who’ve done their honest and absolute best to stay safe and well, I see you and feel you. Do not feel guilty for getting Covid. Keep reading below for more elaboration.
- BA.4 and 5 sub-variants of Omicron are causing spike in cases this summer, dominating over BA.2 less than three months ago. Masks and covid vaccination boosters (if eligible) are strongly recommended by Los Angeles Public Health and may reinstate indoor masking pending cases and hospitalizations week of July 25th [7/28/22 update: LADPH decided to pause masking indoors due to cases subsiding as of today].
- Deaths remain relatively low, but long-Covid and other multiple chronic acute diseases months after single or multiple reinfections are a growing concern, now covered as a disability under ADA Section 504. We are living in a mass disabling event with Covid running rampant due to poor prevention, education, and safety mitigations from CDC.gov and our local governments.
- Mental health for my family and especially me, as the main caregiver for our seven year-old with T1d and non-diabetic three year old has severely impacted my overall health and basic life functions. Finding the right therapist is more challenging than many others think.
- Prepare for back to school with two serious diseases circulating by speaking with your child’s diabetes care team at your local hospital and school care team within the first few weeks of school – be persistent and prepared. Update either your Section 504 or IEP plans and schedule that virtual/in-person meeting asap. More on my Parents Guide to T1d and School.
- Check in on your friends and family even the strong ones. Try not to gaslight them either.
Diabetes burnout is when the never-ending daily tasks of diabetes management becomes overwhelming, sometimes crippling, especially while tackling all of life’s other responsibilities. You hear a lot of media or people without any chronic illness (at least they haven’t disclosed that openly) saying, “We’re all having pandemic fatigue” or “We’re all over it,” either on social media or in-person. Believe me when I say, our kind of tired is most definitely not your kind of tired.
With that said, I’d like to address how I’ve been gaslighted both with Coral’s autoimmune T1d and this ongoing pandemic I’ve also shared in an Instagram post. Examples of gaslighting include, “At least it’s not cancer” or “It could be worse.” It’s all about power, control and manipulation to get us to feel uncertain about actual events or facts happening and lose our sense of reality and sanity. Please learn more about gaslighting and what you can do to combat it from Verywellmind. You may share my infographics below with proper credit [I designed them myself of course] by tagging me @type1diabetic_life on Instagram or @t1diabetic_life on twitter. Please kindly share this informative blog post with anyone you feel would benefit from it. Mahalo in advance.
As the main caregiver to Coral, my seven-year old diagnosed with chronic autoimmune Type 1 diabetes since March 11, 2016; I’ve probably experienced diabetes burnout more times than I realized and this real pandemic exasperated that ten folds. When Coral was diagnosed with life-threatening T1d at only 15 months old, we were absolutely devastated – ER nurses told us she could’ve died from diabetes ketoacidsosis (DKA) a day later if we hadn’t taken her in. There is still currently NO CURE for T1d, but Vertex Pharmaceuticals which just bought ViaCyte announced 7/11/2022 maybe the key to stem cell therapy and beta cell encapsulation. More on that in a later post when I feel like it.
Bottom line: Anything other than essentials like large gatherings with people we wouldn’t trust our children’s lives with, isn’t worth risking our health and safety especially when cases are up. We continue to stick to outdoor activities on lesser crowded weekdays if we really need some fresh air. We’ve been enjoying our newly renovated pool since we bought our first home in Spring 2021. We prefer to travel by plane when masks are required. We would be heart-broken again if Kaila [Kah-e-la] got Covid and was later diagnosed with a chronic autoimmune disease months later due to it’s viral attack on the body’s immune system – not just the lungs. Or worse yet, if Coral gets diagnosed with another chronic illness when America’s Healthcare system has already failed us. We are their only caregivers in the mainland U.S. and my ohana back on Oahu, HI is not capable of even monitoring Coral’s BGs nor basic T1d necessities for survival because they refused to learn with us before we moved to California in 2016.
In addition to managing Coral’s chronic autoimmune disease (AD), I also take care of our three-year old at home since she wasn’t eligible for any Covid vaccine (three-shots for Pfizer or two shots for Moderna) until after June 21st. There wasn’t any availability in our area so we drove about 35 minutes to the nearest Minute Clinic – not bad at all. More on that later.
Here’s a general list of what I do daily, weekly, or monthly just for Coral (not including Kaila):
Regular Daily Diabetes Tasks
- Check or have her check her blood glucose every morning and as often as needed based on my intuition and accuracy of her Libre2 converted to real-time CGM. See our honest unsponsored review from 2021 here. See videos of her poking her toe(s) as she prefers or fingers on Instagram.
- Log fingerstick (FS) value in her Libre2 app, count carbs, and bolus for breakfast.
- Count carbs and read nutrition labels carefully noting any alternative sweeteners like sugar alcohols or erythritol and stevia. T1ds must do this for anything they’re about to consume with carbs to calculate and time the pre-bolus as needed since they can no longer produce insulin due to an autoimmune attack on the beta cells of their pancreas. Learn more about the basics in Our Diagnosis Story.
- Make and prep her lunch for school the night prior – learn more in my Parents Guide to School and T1d.
- Making sure to check her BGs often especially at crucial times to keep her BGs in-range (80-150 fasting and 80-180 2 hrs postprandial) as best and often as we can.
- Typical times we check her Libre2 vary and are
- before, during, after eating or treating a low BG (aka hypoglycemia – urgent, requires fast-acting carbs like juice, glucose tab or skittles).
- Rule of treat with 15g and check and/or treat again if needed at 10-15 minutes generally applies to Coral’s sensitivities and carb absorptions. Speak with your DNE/CDE or endocrinologist how to best use your/your child’s CGM to proactively treat hypo’s and avoid rebound spikes otherwise known as a “glucoaster.”
- AMs and Afternoons: before, during 10-15 minutes of playing, swmimming, or PE and recesses at school – can be very hectic hence why vigilance and quick communication either via text or Google Chats app (shoutout to diabuddies Maggie and her mom Emily @bemaggiestrong on Instagram for the suggestion) with the designated adult or RN is crucial during any type of physical activity even if it’s just walking from her classroom more than 20 yards down to the field or playground. Physical activity builds insulin sensitivity. When BGs spike during physical activity, it’s likely due to stress or cortisol hormones during say gymnastics or a karate competition where performances are judged. Note: Each person’s diabetes is unique.
- Evenings: before taking a shower or bath – warm water also builds insulin sensitivities, check insulin on board (IOB) prior to showering. Check BG within 15-20 minutes if BGs lingering in mid-100s, check more often if BGs lingering in low-100s pending if any slow, fatty, carby foods like pasta or pizza were eaten at dinner (she usually showers after dinner).
- after taking a shower or bath, before brushing teeth, and right as she lays her head on her pillow to sleep. But wait! It’s not over yet!
- PM: Check BG and any IOB from dinner, adjust her temp basals as needed so she can hopefully, cruise on through the night without interruptions for low treatments. We’ll usually give her a small bolus correction if bgs >180s. Note: We used to DIY Loop with Riley Link and Dexcom G6, and pods, but Dexcom does not work for Coral. Learn more of our multiple experiences with over 42 failed Dexcom sensors here.
In addition to caring for my daughters, making doctor’s appointments, battling insurance pre-authorizations for insulin pumps and continuous glucose monitors or the same Freestyle Lite test strips she’s used and prefers since 2016; I’m also a volunteer Digital Advocate for T1 International and have my own small business designing awareness products on Zazzle.com/t1dlife. I’ve postponed my previous small business, Islanddoggie.com, to focus on Coral’s T1d after reluctantly moving from Oahu, HI to Los Angeles, CA in 2016.
What I’ll probably never understand is why some people who I’ve helped in real-life don’t or no longer try to reciprocate the same amount of effort to keep in touch and maintain the friendship. Maybe it’s because I can be “overbearing, too much, or too opinionated.” Whatever the reason, I rather my real-life friends just come out and say it or at least text me back at their convenience with a, “Hey sorry, I’ve been busy. I’m/we’re good. Are you?” I truly empathize with my fellow pancreas momagers and those with multiple young children in this pandemic. I guess I just wish they’d at least check in once or twice a year or big life events like when Coral got her first Pfizer Covid booster – or any of her first set of Covid shots, from September 2021. Even us “strong ones” need to know and hear we’re appreciated and loved too when we give so much of ourselves without expectations.
To our anxiety-filled long-awaited relief, Kaila and those under five years old were finally able to schedule their first Pfizer Covid vaccine after June 21, 2022. Check out Kaila’s Covid shot videos on our Instagram. Almost everyone we know has had Covid or they just neglect to tell us. Hence, why we choose to keep our remaining circle of friends very small to protect each other and the most vulnerable like the young unvaccinated and immunocompromised. It’s been one of our greatest fears that Coral might get Covid in school, bring it home to the three of us, and we’ll all be too sick to wake and treat her lows overnight resulting in severe hypoglycemia and death. OR, prior to the vaccines, Coral and Kaila might get Covid, severely ill and end up in DKA or the PICU. We’re still very aware of thousands of cases of long-Covid (aka post-Covid) increasing within all age groups. Fact: Studies like that published in Nature show that the more someone is infected with Covid the greater the chances of long-Covid and other acute chronic illnesses such as T1d, T2d, etc.
How I wish people, especially those who called themselves my “friends,” would have listened to me when I said, “It’s worse than the flu and it’s airborne” in mid-2020. I wish they would’ve carefully read and shared my urgent blog post on the Delta Variant in July 2021, reviewed by ER Dr. Calvin Sun. Alas, I cannot help everyone and surely not those who still refuse to listen to science. Personal choices affect us all in a global pandemic where Covid is causing multiple debilitating disabilities and is now covered under the ADA. No more excuses.
As of July 2021, “long COVID,” also known as post-COVID conditions, can be considered a disability under the Americans with Disabilities Act (ADA). Learn more: Guidance on “Long COVID” as a Disability Under the ADA-Center for Disease Control and Prevention
Yes, we’re all “over it.” It’s a sad, harsh reality that we’re all living in when many who’ve already been infected with Covid or at least got vaccinated because they’re over five years old, are just over and done with Covid when it is very much still present in our communities. Based on recent trends, it seems each wave of cases come about every three to four months pending on the rate of transmissibility of each new variant. One slight positive is that at least the more transmissible, the less deadly the virus so far. Currently, Omicron is more contagious than Delta with an Rnaught or R0 of at least 7. Meaning, one individual can infect up to 7-14 people or within less than a few minutes of sharing the same air space without any preventative measures like proper ventilation, ALL individuals wearing a well-fitted KN95/KF94/N95 face mask, and getting fully vaccinated and boosted. According to Nature, although vaccinations might only decrease one’s chances of getting long-Covid by half to none, it’s still effective at preventing severe disease and death. Learn more about the effects of pandemic burnout from NIH.
Los Angeles Public Health Updates
This current wave of Omicron BA.4,5 cases are started to show an increase in hospitalizations – a late indicator, around the first week of July 2022. Covid deaths have remained relatively minimal thanks to the vaccines efficacy. LADPH is strongly recommending everyone over the age of two, to wear a well-fitting mask in all public indoor spaces regardless of vaccination status to slow the spread of Covid. Masks are still required in high-risk places such as any hospitals and most clinics. More on their updated guidance here and please view their Covid Dashboard. These tools are best to help us all assess our individual risks and make healthier choices when out in public.
July 2022 Covid & Monkeypox [Orthopox virus] Update – Omicron subvariants BA.4, 5 have an R0 18 similar to measles if not more and easily spread outdoors. Nonetheless, properly wearing a well-fitting KN95, N95, or KF94 mask will decrease the viral load along with current vaccinations, even if the other person neglects to wear a mask (if any) correctly too. BA.4-5 are currently causing hospitalizations to double in less than two weeks in Los Angeles, CA and most parts of the U.S. and UK. According to LA Daily News, Mask measurements indoors still have not returned, but may likely happen [thankfully] again possibly by the end of this week of July 26th with LA county being in the high-transmission category. Stay informed with LADPH here and/or on Twitter and Instagram. Monkeypox has been declared a Global Health Emergency, but not yet a “pandemic” by WHO. Monkeypox is an orthopox virus – typically spread from animal to human, human to human contact (not just gay men), contaminated surfaces and inhaled air particles. Prepare for back to school with two serious diseases circulating by speaking with your child’s diabetes care team both with your local hospital and school care team weeks in advance. Update either your Section 504 or IEP plans and schedule that virtual meeting asap. More on my Parents Guide to T1d and School.
Epidemiologists are concerned that there will continue to be more variants because of the lack of access to the life-saving Covid vaccines in other countries. If you live in America, check your privilege. More on that topic by Cindy Alfaro, Journalist for The Daily Cougar:
By getting the COVID-19 vaccine, you’re not only protecting yourself from the virus but others as well. If you have no medical conditions or allergies preventing you from taking the vaccine then there is no need to wait. Understand that there are people in other countries who wish they had the same opportunity to protect themselves from COVID-19. Vaccines are a privilege and everyone should get vaccinated as soon as they can.-Cindy Rivas Alfaro, The Daily Cougar, September 22, 2021
We, families with young children living with a chronic illness(es) and siblings under five years old are beyond exhausted and for sure “over it.” My family and I have stayed informed with the vaccines and new variants, the ever-changing public health policies, remain masked especially in any crowded outdoor/indoor areas; to protect ourselves, and others who may be more vulnerable. We ask the general public, schools, businesses and especially this diabetes community, to please continue to maskup around young children or at least share your vaccination status too – not a “violation of HIPAA” since I’m not a public health entity. That would ease our anxiety just a little bit. Also, please stop stigmatizing or politicizing masks. They’re not the problem. Humans have always been the cause of their own destruction and the inevitable downfall of society. Lastly, if you’re one of those people who are still spreading misinformation about the Covid vaccines or “masks don’t work,” or think Trump actually won the election – SHUT THE FCK UP already. It’s 2022. Get with the vast majority or 222 million (67.2%) who’ve gotten fully vaccinated and know what real sacrifice is.
How to cope with the ongoing pandemic-maybe-endemic
Get therapy – find a therapist that specializes in your particular situation and is willing to work with your schedule. One who listens with intent and provides the right kind of feedback to help you work on you. I recommend BetterHelp.com where you can pay as you go or I believe a monthly fee. It’s very flexible which is great for us busy Pancreas Momagers or Dads. Use my referral link so we can both get one week free! Real talk: It’s ridiculously hard to find a therapist specializing in caregiver burnout, diabetes, or any chronic illness. I hate having to explain our situation and educate them about T1d over and over between now, my third therapist I’ve switched too. So, I send them my About Us blog post and hope they read it prior to our first session bc I rather not waste my money and time educating them why I’m so stressed out and how this T1dlife is never-ending because there’s no cure, etc.
Find a support group – this goes back to what I said earlier, we keep a tight circle of good friends. You can also search for online support groups like those listed in Time’s article. Basically, anyone we can actually depend on to save our daughter’s lives should we ever get to ill and pass away (Covid or any other illness). We always take care of her friends like family, but have strong healthy boundaries so our aloha is not taken advantage of. Please learn the real meaning of “aloha” from Kanaka (Native Hawaiian) kumu (teacher), Noelani Kamalu.
Travel safely – We went back home to visit some of my ohana on Oahu, HI during spring break unaware of the indoor masking measurements ending that same day on March 25, 2022, to our huge dismay. We had to use our Hawaiian Airlines credit from when we canceled our trip for April 2020 when the U.S. was finally seeing the first surge of Covid cases, hospitalizations, and deaths. Since then, locals have urged visitors to please stay away to help protect Hawaii and its very limited resources. At the very least, tourists can stop geotagging kapu or sacred locations – which is pretty much the entire Hawaiian islands, on social media. Please follow these advocacy accounts on Instagram or read articles by Honolulu Civil Beat:
- @kanakautonomy, @ainamomona, @civilbeat on instagram
Other ways you can travel safely are by staying masked indoors or crowded outdoor spaces with especially lower vaccinations rates less than say 70 percent. Also, make sure your covid vaccines and boosters, and other vaccinations are up-to-date before planned travel for all members of your family or buddies who are eligible. Check those updates on FDA.gov or your local county public health department websites. Learn more on Traveling with T1d. Check travel recommendations via CDC’s interactive map before booking your flight(s).
Stick to outdoor activities – the less crowded the better and no need to be ashamed at all for placing the protective mask back on your and your unvaccinated children’s faces when approaching crowds outdoors as well. We honestly mask up anytime indoors or outdoor crowded spaces until we find us an outdoor table at a restaurant with tentative service and tables are well-spaced approximately six feet apart if possible. We’re planning on going RV camping again this summer before Coral starts school in September 2022. We also plan on going to the beach, swimming in our pool, riding our bikes, drawing chalk on our spacious driveway, and landscaping our yard to be more drought friendly. Learn how to assess your risk with the MyCovidRisk app in addition to reading your local county public health guidelines carefully. Los Angeles residents, scroll down for LADPH’s guidelines.
Schedule virtual phone calls – I’m thinking of scheduling a few facetime or Zoom calls for Coral and her friends over the summer break and maybe even a Pancreas Momager’s Zoom call since a lot of our buddies live in other states or across the globe! Even though I’ve lost a lot of so-called followers on Instagram (usually anytime I post about Covid, the vaccines, or racism), many long-time followers have stuck around. For that, I’m forever grateful given how incredibly difficult these last two and half years have been for all of us. Please remember to make time to speak and reconnect with your friends who continue to give so selflessly.
Express empathy and compassion to those who choose to remain vigilant with Covid precautions. Do not shame, stigmatize, or gaslight people – families like us. You just never know if they’re going through diabetes burnout or any other mental health challenges. It’s depressing for me to know that half of America has just thrown caution to the wind. Putting their own personal choices ahead of many others including children in schools. Going so far as even to tell me, “We’re entitled to a mask break,” while her school had one outbreak that we know of. The ignorant ableism persisted with no email notification of a Close Contact Exposure to be sent to us as required by LADPH Protocols for K-12 schools, when her classmate had Covid after Spring Break. Yep, I checked all my inboxes and spam folder prior to contacting and questioning her school’s principal. Coral only found out because her classmate told her and then of course, she told me. Good on her classmate, I guess, for being honest knowing Coral has T1d. I hope those parents read and learn something new from any of my blog posts.
Take it easy on the alcohol or speak with your healthcare provider about depression/anxiety medication or CBD/THC edibles. I need to take my own advice on the former. I have taken refuge in my CBD/THC gummies and mints occasionally when diabetes, school, and the kids tantrums or constant daily fighting takes its toll. Use my referral link and we both get $20.00 if you place your first order on Heyemjay.com (located in southern California). They deliver too! You gotta love Doordash for certain restaurants that deliver too. Must have a strong sense of self and independence from substances to prevent self-harm or abuse. This refers back to the first coping mechanism to find the right therapist that suits your most pressing mental health issues. This is also why it’s important that others check in on their friends even the often seemingly “strong” ones, perhaps like myself [wink, wink, sigh].
Physical health – find the right type of exercises that fit your needs best with help from a certified sports and health fitness coach [full disclosure: I didn’t because I know my body well and have always been active. I also took gymnastics and cheerleading during my sophomore year. So, form is everything to avoid injuries]. Slowly work your way up from beginner to advanced. I always enjoyed high intensity interval training (HIIT) workouts since after giving birth to Coral in 2014 in addition to surfing since I was 18 to about 33 years old. Since reluctantly moving to SoCal, I’ve lost my passion for surfing here because I seriously can’t stand how cold the water is almost year-round. I can’t even see my feet as soon as I step in the water. Furthermore, because of all the oil refineries, I’d sometimes leave the beach walking back to my car with sticky patches of tar like glue on my bare feet. I’ve seen more sharks in the water here than I have back home on Oahu and nothing, but another tropical destination will ever compare. So, I’ve added on weights to my HIIT workouts which are typically 25-45 minutes, two to three times weekly, pending on how busy I am with her care at school or any other obligations and medical or dental appointments we have going on. Bottom line: Make time to work out and you’ll feel so much better later on in the day. Surround yourself with those who truly get you and avoid those who continue to gaslight you.
In closing, I’d like to say thank you for reading this far. Please share with all your friends, family members, co-workers, and anyone else who could use some support or enlightenment if they’re willing to truly listen to us advocates. Stay well and don’t forget to subscribe to our blog, follow us on Instagram and/or Twitter. Shop the “I Love Someone” shirt and many other awareness products I’ve designed on Zazzle.com/t1dlife to show some love. I could really use a virtual hug.
Abbott, Allison. Nature. “COVID’s mental-health toll: how scientists are tracking a surge in depression” <https://www.nature.com/articles/d41586-021-00175-z>. February 3, 2021. Accessed July 26, 2022.
American Diabetes Association. “Postprandial Blood Glucose” <https://diabetesjournals.org/care/article/24/4/775/23438/Postprandial-Blood-Glucose>. April 1, 2001. Accessed 8 Jun 2022.
Cristina Lluch et al. “The Impact of the COVID-19 Pandemic on Burnout, Compassion Fatigue, and Compassion Satisfaction in Healthcare Personnel: A Systematic Review of the Literature Published during the First Year of the Pandemic” <https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8872521/>. February 13, 2022. Accessed 13 Jul 2022.
Gordon, Sherri. Very Well Mind. “What is Gaslighting?” <https://www.verywellmind.com/is-someone-gaslighting-you-4147470>. January 5, 2022. Accessed 10 Jun 2022.
Vieira, Ginger. Endocrine Web. “How to Beat Diabetes Burnout” <https://www.endocrineweb.com/conditions/type-1-diabetes/how-beat-diabetes-burnout>. November 16, 2021. Accessed 8 Jun 2022.