#dysautonomia the gift that keeps on giving

[tj-crochets]

Hey does anyone else with one or more forms of dysautonomia* have a thing where if they have a moderate-to-severe physical stressor (like a severe allergic reaction, getting a vaccine, stuff like that), they get a new bonus dysautonomia for a few days to a few weeks? I thought it was a side effect of allergic reactions for me**, but this vaccine I had pretty much zero allergy symptoms but am having new issues, so I think it might be more general. A few times, I've had increased issues with low blood sugar for usually only a few days, but sometimes as much as a month or two after a severe allergic reaction. Once, I had waaaaay over-sensitive adrenaline reactions for a while (bad enough that I watched an episode of gamechanger and had to stop because I got too tense and my heartrate shot up). A few times, including this time, my thermoregulation seems to be very off. Like, it's not great in general, but now I am sweating so easily which is not normal for me (and not good with my salt issues) *my diagnoses that fall under that umbrella, more or less, include but are not limited to: salt wasting syndrome, POTS, possibly MCAS, tachycardia (separate from the POTS), and "something is weird about your endocrine system, maybe Addison's?" **I did bring this up with my allergist! He said "Allergies don't do that". I said "If it's not allergy related, then why does benadryl help?". He stared at me for a while, then said "I don't know. Allergies shouldn't do that"

[strangenewfriends]

Distinctive Assets founder Lash Fary, a swag veteran who has curated the Grammy Awards gift bag for 22 years, said the Recording Academy wanted this year's offerings (gifted to performers and presenters) to reflect the current times. Performers like BTS, Taylor Swift, Harry Styles, Cardi B, Brandi Carlile, Maren Morris, Bad Bunny, Dua Lipa, John Mayer, Post Malone, Roddy Rich, Lil Baby, among others, will receive gift bags filled with products and goodies. What they will get is the Grammy's most inclusive and diverse gift bags to-date, "representing companies owned and operated by individuals across race, ethnicity, sexual orientation, gender, age, persons with disabilities and beyond." It's a gesture Fary said his team has been naturally shifting toward over the past five or so years as companies and brands have centered social responsibility.

While many of the goods and products inside come from BIPOC-led brands, others come from corporations that have made philanthropic commitments to relevant causes. For example, inside the bag recipients will find new Ruffles Flamin' Hot BBQ potato chips. Ruffles owner Pepsico recently committed $400 million as part of a five-year plan to advance and support Black communities.

Fary declined to specify the value of the gift bags and would only say that the "real value is that we're elevating and shining a light on these diverse brands." He would say that the value is commensurate with previous years and that close to 100 will be doled out to VIPs. (WWD reported that the price tag is more than $5,000.) And speaking of delivery, to honor COVID-19 protocols and keep contact at a minimum, the bags will be delivered or mailed to show participants rather than exchanged in a suite, as is typical.

Grammy Awards host Trevor Noah is also represented in the bags via a Bonfire and Trevor Noah Foundation collaboration that features a t-shirt and tote bag set. Featuring designs by South African artists and currently for sale by the Trevor Noah Foundation on Bonfire.com, 100 percent of proceeds help the Trevor Noah Foundation in its mission of bringing education to children in South Africa.

With dozens of products included, it's a challenge to list them all but highlights include: luxury tea essentials from Cup of Té, a tea company founded by Taylor Lindsay-Noel, a disabled Black entrepreneur who was a world-class gymnast in her teens before a life-altering accident; handmade bath and body products from luxury brand Hotsy Totsy Haus, a company founded by a deaf single mother Christi Leonardi; pumpkin and peanut butter handmade dog cookies from Wags Cookies made by Emily Ainsworth, who battles dysautonomia and chronic pain; HGC Apparel's "Respect Protect Love the Black Woman" scarf which serves as a celebration of Black culture from founder Marcia Smith; PETA partnered with Save the Duck for a high-tech, down-free vegan coat; Once Upon a Blume's Change Maker Village, an anti-racist children's book sales of which support the NAACP; and Unis Brand's 3D-printed sneakers that feature entirely recycled materials like water bottles and refurbished linens.

"Giving gifts is always a lovely thing, even in the worst of times," Fary explains. "With the coronavirus pandemic, systemic racism and the Black Lives Matter movement, there's so much going on in the world, it would be irresponsible of us to put together a gift bag for a global music event like the Grammys and not acknowledge what's happening in the world. … From the outside looking in, it looks like an amazingly fun gift bag, and then when you look closer, it's so heartwarming."

[herbaceousriot]

Important Shop Update

Thank you so much for stopping by! I’m so sorry you missed me, but I won’t be closed for long. Keep up with things here on my blog and sign up for emails. 

If you’d like the short story check out the shop updates post on my shop. Scroll to the bottom to see updates and shop info. This is also where you can sign up for emails.

Shop Starts Shipping Again Jan 6, 2020

In this post I’m going to go a little more in depth about my extended shop turnaround times and the reason I’m closed for the remainder of 2019. Specifically, I’m going to use this post to answer all the questions that keep hitting my messenger services. Everyone is so kind and concerned, it’s truly heartwarming. I didn’t want to ignore anyone, however time is very limited so I’m using this space to answer as much as I can. 

I am an individual that suffers from a form of Dysautonomia. It’s an incurable condition that I have learned to live with. Your support in my shop helps with medical bills and supporting the needs of my family. Thank you. 

My turnaround times were expended simply because I try my best to be completely transparent with what customers should expect. My turnaround time is typically still within 5 business days. Sometimes, when my blood pressure is really low and my body is not exactly wanting to function the way it should, I find myself unconscious Followed by the inability to see, stand, or speak. In these times there might be a case where my turnaround time extends to 1 to 2 weeks which is what it is at now. I never want anybody to be upset or disappointed for not receiving their packages when they expected them. So I figure it’s better to be a happy surprise that it came sooner than have these instances where someone is disappointed because it took too long. 

Unfortunately I have to go through surgery Dec 25th. My Etsy shop will remain closed during my surgeries. My shop will remain open because I do not want to close it. I do not want to give the illusion that I’m not coming back or it won’t be there. However I will be having surgery. I will not even be able to get out of bed for two weeks. Then more physical therapy. So for 4 weeks I will not be shipping any orders or work. You are still free to place orders and as soon as that time is up and I have had time to both heal and recuperate my strength I will begin shipping out orders as fast as humanly possible. If you would like to donate in the form of a purchase. If you would like to donate to my medical fund please use this link.  

So that’s what’s going on. 💜 I should be absolutely ok. Thank you all so much for your well wishes. So much love. ❤️

I want to also thank you so very much for your support and your understanding. This holiday season was absolutely insane and I loved every bit of it. Seriously, thank you from the bottom of my heart. Your support funds so much more than likes and follows on social media it does so much more than give me reviews and accreditation in Etsy’s Marketplace. It helps me heal, and it helps my family build memories. Your support improves the life of another human, several of them in fact, and I believe that to be extremely magical. Thank you so very much! 

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[illness-to-wellness]

The questions and inspiration for this post originally came from Invisible Illness Week 2015. I’ve written a little bit about POTS before, but nothing this in-depth. This was initially published as a guest post on Kate the Almost Great with this intention: “I decided to add to the health part of [this] blog by sharing about an under-diagnosed chronic health condition, postural orthostatic tachycardia syndrome (POTS). Though it’s somewhat rarely diagnosed, somewhere between 1-3 million people in the United States live with it!”

1. The illness I live with is? Postural orthostatic tachycardia syndrome (POTS), which is a form of dysautonomia. Dysautonomia is an umbrella term for syndromes that involve misfirings of the autonomic nervous system. You can learn about POTS’ mechanisms and vast array of symptoms in this short video.

Source: Dysautonomia International.

2. I was diagnosed with it in the year: 2016.

3. But I’ve had symptoms: My entire life, but they got far worse once I turned 20 about 4 years ago.

4. The biggest adjustment I’ve had to make is: I spent almost half of my summer in 2016 at Mayo Clinic or en route to Mayo Clinic! I went for a week to get diagnosed and seen by a bunch of different doctors, and then I returned for a 20-day intensive pain and symptom management program afterward that gave me my life back. I’d do it all over again in a heartbeat. In terms of my daily life adjustments, in order to manage the symptoms I get the most – higher-than-normal heart rate upon standing or sitting, fatigue, brain fog, dizziness, sweating, weakness, headaches, and nausea – I’ve had to adjust my life significantly. Because of all of these adjustments, though, I’ve started to feel so much better. I had to start exercising 4-5 times a week, weight training 3-4 times a week, eating 6 small meals a day, ingesting 4-8x the amount of salt as a person without POTS to help my blood flow to all parts of my body better, wearing compression stockings or compression shorts, taking 3 different kinds of meds for the symptoms, drinking about a gallon of water a day, and trusting my body to do what it needs to do, even though I know it has problems. These take a lot of time, effort, endurance, and patience, and I’m not perfectly adherent in keeping them, but I do my best. I’ve written an entire piece on managing it, and chronic illnesses in general, if you want some Mayo Clinic-approved and personal success story-proven tips.

5. Most people assume: That the main symptoms of orthostatic intolerance (having the heart rate shoot up and not go back down, like it’s supposed to, upon standing up) and exercise intolerance (though you can train up to it!) are due to laziness and being out of shape. Some doctors don’t think that POTS is a real problem, and one even told me that it’s the “medicalization of inactivity.” That’s just wrong.

6. The hardest part about mornings are: Knowing that getting out of bed is going to make me feel dizzy, nauseous, and fatigued. Once I drink a few cups of water, take my meds, and eat my first small meal of the day, I start to feel human.

7. My favorite medical TV show is: Grey’s Anatomy.

8. A gadget I couldn’t live without is: My Fitbit. I have a bunch of other favorite products that help me manage my life in general, though, which I’ve put into lists based on the kind of help they give me: vocational and physical. (At some point I’ll have one for mental health!)

9. The hardest part about nights are: Sometimes being absolutely exhausted and feeling like I have nothing left in me to the point where I don’t want to talk or do anything. However, when I manage my symptoms well, and make sure to moderate and pace myself throughout the day by taking rests, I can make it to the end of the day these days. It’s often my fibromyalgia (a chronic pain syndrome that can be linked with POTS) that gives me the most trouble by the end of the day, but that’s a different story.

10. Each day I take 12-14 pills & vitamins.

11. Regarding alternative treatments I: Believe in ones with evidence and don’t buy into the ones that don’t. There are a lot of non-medical things that I do to manage my POTS symptoms (see articles on how I manage and what products I use for my vocational and physical health, but I’d be toast without my medications for it to help bolster what I already do.

12. If I had to choose between an invisible illness or visible I would choose: This is a can of worms. Living with an invisible illness (or, in my case, four different ones) means living in a liminal space where you’re never quite healthy enough, yet never quite sick enough. The truth is that many chronic illnesses are only invisible if those around you choose to avert their eyes. However, when I was at Mayo Clinic’s Pain Rehabilitation Center, I learned how to do what we termed “stealth moves” to take care of myself without others noticing so as to not worry others around me, as well as not have my life revolve around pain and symptoms by others’ constant questions. (I couldn’t recommend the PRC enough because it gave me back my life. And, amazingly, in my young adult cohort, more than 80% of us had POTS! There was an unspoken and life-changing understanding among us). At this point, I’m grateful they’re invisible because it allows me to more easily live life without others worrying or trying to accommodate me because I can usually take care of myself. However, I’m glad that I have many trustworthy family members and friends who remind me that I don’t have to go it alone.

  With the idea and urging of a friend, I created this game called “Spoonopoly” (based on the Spoon Theory of chronic illness) that shows just how much little things that most people don’t even think away can, and just might, zap away your energy if you live with something like POTS.

  13. Regarding working and career: I have to take care of myself very carefully and closely in order to assure that I will be able to keep going strong. There have been various points in my chronic illness journey when I didn’t think I’d be able to work even a part-time job, so it’s a miracle that I interned this summer as a hospital chaplain with more than full-time hours! (I’m worked 75 hours one week because, you know, 24-hour on-call shifts. What). I get to do work I love, so I try to keep well enough to do it.

14. People would be surprised to know: Just how fatigued I feel so much (read: all) of the time, yet I come across as having a lot of energy because I’m a positive and gregarious person. Looks can be deceiving, but I’d rather live life to the fullest I can rather than having it pass me by.

15. The hardest thing to accept about my new reality has been: Slowing myself down on my best ways, or pushing myself on my worst days. It looks different every day, and it’s hard not to be able to be as consistent as I’d like to be.

16. Something I never thought I could do with my illness that I did was: Hike up steep mountains again! I may be the sweatiest person alive when I get to the top, but y’all, what a gift it is to be able to see the world on foot, despite what my heart rate can be. This is a picture of me on my way up Masada in Palestine, which is pretty much a straight-up cliff that goes more than 1,300 feet up.

17. The commercials about my illness: Are non-existent. Most doctors have no idea that it’s a thing, so why would there be lucrative pharmaceutical enterprises for it?

18. Something I really miss doing since I was diagnosed is: Actually, getting my diagnosis helped me get things that I had lost back.

19. It was really hard to have to give up: Getting to be totally carefree about my health. It’s a job, y’all. But you have to laugh anyway – otherwise you won’t make it.

20. A new hobby I have taken up since my diagnosis is: Taking walks around the neighborhood on days that I want to get exercise, but don’t feel like going on the elliptical.

21. If I could have one day of feeling normal again I would: You know, at this point, I live a pretty normal life by my own standards. I wish I could be a bit more consistent and carefree, but that’s a human struggle that we all go through at points in our lives, no?

22. My illness has taught me: How weird the human body can be! I can’t even describe the strangeness of some of the tests that you have to undergo to get diagnosed conclusively with a dysautonomic condition. Here are two pictures from my diagnostic period at Mayo Clinic: one of me wearing all sorts of medical devices to monitor my heart rate and blood pressure, and after I underwent a sweat test to make sure I had autonomic nervous system dysfunction rather than brain damage They put sand on you that turns purple on contact with sweat. Let’s just say I was amused, but also a bit disturbed.

23. Want to know a secret? One thing people say that gets under my skin is: “You’re so lucky to have a handicap permit for your car!” (I use one on my worst health days.) I would do anything to not need one, so this one small societal perk isn’t even sort of worth the sometimes-disabling health conditions that allowed me to get one. “God has a good plan for your health problems.” This is plain old unhelpful and even aggravating. I believe that God does beautiful things with the situations surrounding them, and I am grateful for what I have learned, but I would erase the health problems from my life in an instant if I could.

24. But I love it when people: Are willing to sit with me when I need to take a break; flexible in making plans with me, including adventurous ones; and compassionate about what I go through, not seeing me as a victim, instead hear and help bear my pain.

25. My favorite motto, scripture, quote that gets me through tough times is: I have a LOT, but one that fits my journey particularly well is this: “We are all in the gutter, but some of us are looking at the stars.” – Oscar Wilde

26. When someone is diagnosed I’d like to tell them: That this isn’t the end of the world, even though it sometimes feels like it. How much they can work to improve their situation. How they’ll be able to have a good life, despite their symptoms. I’m living proof that things can change if you’re dedicated, and I am no stronger than you – just perhaps a bit farther in the journey! (And that means I now know some advice that’s actually helpful.)

27. Something that has surprised me about living with an illness is: The compassion, wisdom, and patience that accompany it. I’ve become a much better listener and friend now that I know more about what’s like to undergo the unexpected and undesired.

28. The nicest thing someone did for me when I wasn’t feeling well was: Take out the trash that had been accumulating for weeks, make me dinner (a dish that fit my dietary restrictions), and do the dishes for me. I sobbed. And that’s just one example – I could name so many more. I love my friends so much.

29. I’m involved with Invisible Illness Week because: 96% of disabilities are invisible, yet everyone assumes that disability is a binary where you’re either visibly disabled or entirely healthy. No such thing, y’all. I’m also involved in invisible illness awareness campaigns because being disabled does not mean that I’m a total inspiration or a horrific tragedy. That’s another false binary around disability, so I’m smashing the expectations by sharing my lived experiences – the gray area, a liminal space rather than one that is black and white.

Carol Rossetti has amazing cartoon depictions of unexpected victories in body positivity and feminism like this.

30. The fact that you read this list makes me feel: Glad because this is an under-diagnosed syndrome that needs more attention! Thank you.

30 Things About Living with Postural Orthostatic Tachycardia Syndrome (POTS) The questions and inspiration for this post originally came from Invisible Illness Week 2015. I've written a…