Zech Whitby

“I love you, know that…..You have the world ahead of you, and it will be great”~Zech Whitby

On September 6th, 2018 the world lost a good man. Our friends at Bitter Hearts Tattoo lost a part of themselves.

My roommate and I have found a sort-of home at Bitter Hearts, and we care about the people there. Last Thursday, while sitting in class, I received a text from him. It was a screenshot of a post that Zech made on Facebook the night before:

https://www.facebook.com/plugins/post.php?href=https%3A%2F%2Fwww.facebook.com%2Fzech.whitby%2Fposts%2F1817868241667377&width=500

What happened with my roommate and I next doesn’t matter. What matters is what Zech wrote. Please read it all. Then read it again. Then show it to everyone you know, because that’s what Zech would’ve wanted.

I don’t have much to say, because there are no words for the pain that not just I feel but that our friends at Bitter Hearts feel. No words for what I see in their exhausted faces after a week of his absence.

What I do have to say is this: There ARE people out there who will listen. People who want to help. People who don’t ever want another person to end their own life.

How do I know?

That Saturday, the 8th, we attended a gathering at the shop of everyone who’s ever cared about Zech who was able to be there that day. Most got tree tattoos (his specialty) in memory of him. Over 130 of us got tattoos and are now connected by our love for Zech. Some drove hours, or flew in from other states; some came to help give tattoos. Within the first 30 minutes, they had around 40 people signed up. The cost of the tattoos plus any donations were given to Zech’s family to help pay for funeral costs. The turn out was overwhelming. What was most overwhelming was how much we’d all wished he had just asked for us all to come. How much his friends and family wished he could’ve seen the crowd, the tears, the family of people come to pay respects and share their memories, and their love.

Every one of those people would gladly give their time to listen to someone who needed it. To help someone who was giving up, whether they knew them or not.

If you or someone you know is struggling with suicidal thoughts please call the suicide hotline: 1-800-273-8255 and the text line is: 741741 (text “TALK” )… The national suicide prevention website also has a computer chat feature.

“I’m sorry I wasn’t there.”-Zech

If you would like to see Zech’s art, please check out his Facebook page, personal instagram, and his Dead Trees Art Insta.

If you would like to see Bitter Hearts collective work as well as posts for Zech, please check out their Instagram page.

Missing Work, Tattoos, and Self Care

There’s a corresponding video to this blog post here.

This week I had to miss two days of work for my chronic heart condition. Currently I’m still trying to figure out what is causing it to flair because I’ve been sleeping most of the time. The sleep doesn’t seem to be helping.

Thursday was our first day of classes, and while waiting for lunch before work I almost passed out. Not a fun time. Friday I had to get some minor fillings done (didn’t need novocaine) and was still having some pretty bad symptoms so I missed work again.

The hard part about having an invisible illness is that, sometimes, taking care of myself doesn’t necessarily mean laying in bed. It means doing something enjoyable, not thinking about my jobs (I’m about to start a 3rd one), not worrying about producing content, being in good company whether that’s my best friend or my pets or family, and just lowering my stress so my heart condition doesn’t flare.

Unfortunately, not many people understand this. A lot of superiors don’t have empathy to a situation where you aren’t bed ridden, and even when they do it’s still something I worry about just from past experience.

Ultimately though, my health comes first. I will never force myself to work if I know it isn’t healthy. I don’t want to ruin my health just for a day of work; especially since missing one day is better than missing a week because I didn’t rest and got worse.

Having a minor chronic illness that lets me live a relatively normal life, and having to trade a minor inconvenience like someone’s lack of understanding, I can easily and happily live with that. But I am constantly aware of the situation and always want to help raise awareness. If you’re in a position to advocate for someone with any kind of illness, well… it’s always appreciated.

The attached photo is my newest tattoo which I talk about in the video link at the top of the page. Thanks for reading!

Interviews, American Ambulance Costs, and Medical Reception

I always get nervous, applying for a new job. I think most people do; reaching out to a stranger and asking them to see your worth as an employee from a single resume, cover letter, and maybe an interview, is intimidating.

With my chronic illness, it can sometimes be even more intimidating because, while my illness rarely affects my work, (I’m very lucky, I know) telling a new employer about it is always a bit nerve wracking. I’m never sure if I should or not, but usually decide it would be better to be upfront. Why? Because if something did happen, they would know how to handle it and everyone would be less nervous.

My biggest risk is fainting, either due to vasovegal syncope, or exhaustion. Either way, I have a tendency to go into postural seizures (there are different kinds of seizures) which is, in my case, due to lack of oxygen to my brain from a blood pressure drop. For someone who isn’t educated about it, or doesn’t know me, it can be horribly terrifying. Everyone has heard that fainting, especially with seizures, needs an ambulance. Except, no, mine doesn’t. I, in every time it’s happened, have always needed a big glass of water, an apple (I really don’t know why that helps but it does, where other foods don’t), and a nap that lasts several hours. A thousands of dollars ambulance ride and a pointless ER stay have never been required.

In America, regardless of who calls them, the patient pays for the medical transport service and the ER bill, even if they don’t want it. If you’re unable to verbally refuse service and your medical ID doesn’t say “no ambulance”, there’s no way around footing the bill. It’s extremely frustrating, and why many epileptics risk a fatal seizure to avoid paramedics. It’s also why, even though I have a medical ID, I don’t like to go places without a friend or family member. My ID doesn’t have the ambulance ban because I don’t faint enough to risk turning down lifesaving help if another emergency arises.

Anyway, back to jobs. Wednesday, I had an interview for a position as a part-time receptionist in a post-acute care facility. I told them about my illness and, to my relief, it didn’t phase them (HOORAY!!). I got a second interview on Friday and GOT THE JOB!!

I don’t have much experience in the field but I’m very passionate about being a medical receptionist and maybe ending up as a doctor’s personal secretary some day (I need to learn more about what that job entails before I know for certain). I want to be one of the people helping to connect patients and their care team in a way that makes them feel comfortable and like they’re a priority.

As Spoonies, we know how big a difference it can make when your receptionist is knowledgeable and helpful vs. when they’re not. One recent experience I’ve had was of calling into a facility, asking for a specific specialty department for an office visit, and instead being connected to a procedure office with a similar sounding (but very different) name. Not only did it slow me down, it slowed down the procedure scheduler, and if she hadn’t caught it I would’ve been extremely angry to find I’d scheduled a procedure, and not an office visit, and would have to start the scheduling process all over again.

I want to be that receptionist who makes a patient or their family say “Wow, that was quick!”, “This was so much easier than I thought”, or “This facility cares about us” because so many times I’ve spoken to someone who wasn’t certain what I was asking, which department I needed, or what health condition I was talking about (or its subsequent urgency) and it made me feel like I was just an annoying voice on the phone instead of a human looking for medical care. I’m educated in a lot of kinds of conditions and since my mom is a nurse I’ve learned a lot about levels of urgency. This can be helpful when relaying to a nurse or doc in a message the urgency of a patient’s call. Attention to detail can help a patient feel welcome and like they matter to their care team.

Receptionists are the first person you interact with in a hospital or care facility, and they have the ability to make your subsequent interactions just a little bit easier. I’m so excited to start, so that hopefully I can make the patients more comfortable and help their families to know they’re a priority and being cared for properly. I hope this step into this field leads to even more opportunities to help build communication between patients and facilities. I think I’m going to really enjoy the job and am looking forward to starting.

Missing Work, Loyalty, and Determination

These past two weeks have been stressful, to say the least. My overall sense of calm, loyalty, judgement, and resilience were tested in ways I did not see coming.

First, I had a minor health complication that normally would have been a quick fix in the form of an outpatient procedure with minimal fuss. Unfortunately, my health insurance does not cover my doctors whom have been familiar with my personal history (even though the company said it would). This meant I could either tackle the problem with rest and an old medication which I was not fond of, or go to a doctor who doesn’t know me and certainly wouldn’t understand how my current problem tied in with my complex history. I chose to rest.

The American Medical System, everyone…..the one place you’ll find people choosing not to see a doctor to avoid bills for visits and procedures which may make them worse or that would not be helpful even though the prices make you think they would be the best in the world. (If you’re looking for a good YouTube channel about healthcare and insurance check out Healthcare Triage)

I had to take time off of work to heal, which isn’t ideal considering I can’t exactly afford that. Now, my much needed student loan refund is probably going to go towards supplementing that lost income.

On top of that, I took more time off to help a friend with their own personal health crisis. Which is where my patience was tested. My friend was not the problem. I will not get into details, for their privacy and general courtesy for all involved. I don’t see the point in publicly shaming someone in this particular situation.

Details aside, I learned things about myself and have found I’m quite proud of those discoveries. I found that I’m willing to stand up for a friend and protect their freedom to choose, and their basic autonomy. I found that I could withstand mental intimidation and childish retaliation and respond with maturity and a sense of calm and rationality. That’s not to say I didn’t feel anger, because I was beyond angry, but I didn’t act on it and I am glad I did not.

I was deeply invested in maintaining my friend’s freedom and autonomy, probably because it’s something many of us in the chronic illness community lose for many reasons. Sometimes, it can’t be helped. But when another person over-steps their bounds and threatens, needlessly, someone else’s freedoms that makes me extremely upset. I believe that people are healthiest when they’re given the chance to be responsible for their own lives, decisions, and bodies. I’ve seen people thrive once they had full control over these things.

Additionally, no one can grow or learn if they only take other people’s advice or orders; if you did not make the decision yourself there is always the question of “would it have turned out better if I’d done it my way?”. People typically learn better when they experience consequences for themselves, instead of listening to the consequences another experienced. This isn’t to say that we should all go and do things someone else has found to hold undesirable consequences; advice should be listened to and other people’s viewpoints taken into consideration. But don’t forget to form your own opinions. Trust your gut, your heart, and your mind, while also listening to the opinions of multiple people and sources to form your own opinions.

Whether it’s your healthcare, or your personal life, or your career or education, your decisions are your own and no one can (and no one should) take that away from you. The very few exceptions are if you are directly harming another person, or yourself, or if your own mental illness has made reality very…. cloudy. But even in these circumstances, there are people who have the training and the knowledge to assist and whom we give this authority to, and there are people who do not.

I know a lot of this depends on the situation and which person is trying to take away the free choice of another. In my own situation I asked for advice from multiple people and I stood by what I strongly felt was right. I will never regret that.

I’m back to work now and excited to start the new school year soon. I hope I’ll be able to bring you all more content and that we all have a low stress week. Thanks for reading!

Excoriation Disorder

Apart from my physical illness, I also struggle with mental illness. The ones easiest to guess are depression and anxiety, but those don’t affect my functioning nearly as much as one I’ve had for 17 years and counting: excoriation disorder.

When I first got it bad, I was in 5th grade, age 10. I’d had it before then in the form of scratching at my scalp until it bled, but in 5th grade it turned to the more recognizable skin picking people see with excoriation disorder, a.k.a dermatillomania. I had acne, which meant I was scratching and picking at pimples, but I was also picking at spots that weren’t anything except itchy. I grew up learning to wear bandanas, hats, and makeup regularly. I never failed to put something on to hide my wounds and scars.

My days, weeks, months, and years looked like this: wake-up, shower, peel at dried and healing skin, put makeup on, walk out the door nearly in tears saying “I’m ugly”, wishing I knew why I couldn’t help but do this awful thing to myself, then come home from school and go straight to a mirror to pick, wash my face, and curl up in front of a video game.

I missed out on a lot of fun things because I was scared they would cause me to have to show my skin. Swimming, summer camp, sleep overs, late nights with friends after I’d spent hours in front of a mirror and looked too awful to want to go out.

I tried everything. Covering mirrors, warm washcloths to aid in healing, acne creams, keeping busy, all of them failed. The things that did work the best were the warm cloths and staying so busy I didn’t have a chance to pick. Some days I would have to accept that I was going to look “not-my-best”, and that it was okay because I was going to heal. There were a lot of tears, a lot of lost friendships, and a lot of frustrated days with my parents just wanting me to be better.

When I was 10, dermatillomania wasn’t even a diagnosable disorder. When I was in my teens, the APA decided it was a thing, and that it had its own classification among other conditions like trichotillomania (hair pulling), which were grouped together due to their dual nature: a mix between cardinal behaviors of addiction, and those of obsessive compulsive disorder. When I started college, they then called it excoriation disorder. It had a name. I had an answer. I had something to fight, something to treat, something to see a doctor about.

Sadly, there’s not much to be done. Similarly to addiction and OCD, excoriation disorder varies in cause, severity, and form of treatment. Sometimes, there isn’t an effective treatment and you just have to work through it day by day. Some people find behavioral therapy helps, or counseling to assist with the root cause (if there is one besides brain chemistry), for some it’s a matter of removing yourself from the temptation. Many people avoid mirrors, or being alone for too long. For myself, therapy was a failure.

Maybe they should start an AA for skin pickers. Maybe it’d help to get a coin for a year, and pats on the back each month you go without destroying your face, arms, legs, and back. It feels like a constant battle because it is. I’ve spent every day, for 17 years, fighting my brain’s constant desire to pick at my skin until it bleeds.

It’s not about hurting myself, it’s not about destroying my face because I hate looking at it, it’s not some obsession with blood or pain or wounds. It’s an overgrooming instinct. A desire to have clear skin, empty pores, and an even toned complexion. I would pick until I was certain all the dirt and oils clogging up my skin were gone, but it’s not a conscious decision. It’s an odd instinct, almost out of my control. If you’ve ever has the urge to scratch a mosquito bite until it bleeds, or pick at a scab or dry skin, then you have experienced that instinct. Mine, however, just happens to be out of control.

Sometimes, the best way to fight it, is to be more meticulous and methodical about my skin care. To remove instinct from the equation and have rules much like a doctor would when treating anything. I would think “blackheads and whiteheads are fair game as long as there’s no bleeding or pain” and “dry skin, okay, I can take care of that, but scabs I need to let heal” and I had a set routine of washing, moisturizing, and grooming that made me hyper-conscious of my actions and thoughts. This helped, but the minute I became tired or distracted and got lost in my thoughts, instinct would take over and I would lose two hours to “face grooming”. Which resulted in more picking just out of sheer anxiety.

This disorder comes and goes with my stress. Lately, my stress has been high and so my skin is a wreck; the skin picking is at the worst it’s been for a year and a half. There are red wounds all over my face. I would post a picture, but the fact that I’m not should tell you something: I am horribly ashamed of my skin. I know that most people would understand, seeing a picture of my face, that it’s a disorder and it’s healing. But…. my anxiety is too great and I cannot force myself to photograph it.

What I want, is to raise awareness. Awareness that this is not completely under my control and unlike an alcoholic who avoids the bottle, I cannot hide from my own skin. I want to give tips to those struggling: warm compresses, showers, and baths, can help take away the urge and soothe skin, and staying busy and among people who understand is helpful to keep your hands (or tools) off of your skin. I want to explain why sometimes, I hide away, and there’s nothing on this planet that could get me to come out, especially without makeup. The building could be on fire and I’d probably sit here putting foundation and concealer on (I wish I was joking but it’s also okay to laugh, because that image is pretty funny).

As a Spoonie, I have enough on my plate. My excoriation disorder feels as much a part of me as my heart or GI conditions, maybe more so. I am always going to fight it. I am always going to work to manage it. It’s one more thing that takes my spoons away. One more thing that affects my daily functioning and causes me to miss out. I, like anyone with chronic illness, constantly wonder what my life would’ve been like if I didn’t have excoriation disorder, but I also wouldn’t be the person I am. I wouldn’t be as understanding or compassionate, I wouldn’t know how to soothe wounds and spot severe infection. I wouldn’t know that heat works well, but a combination of heat and ice do wonders for reducing inflammation for acne as much as they do for muscular wounds. I wouldn’t know that sometimes people do want to visit friends but there are other factors in play for their decisions. I wouldn’t know how to stand tall (well, as tall as a 4’10” girl can) and confident in a room full of people and make a speech (something I’ve had to do) when I feel my least confident and my most disgusting.

I know more about the human condition than I ever would have if I did not have the illnesses I have. And I am proud of that. I am okay with being sick, if it means I can help someone else with their illness. You do not always have to receive good, to put more good out into the world. I will never regret anything, as long as my life makes me more kind and compassionate as opposed to bitter. My illnesses have taught me that I now have knowledge I did not have before, and I fully intend to use it to benefit others.

It certainly beats going home and picking at my skin, doesn’t it?

Keeping Up With the News, and a Bucket List

I’ve been disconnected from current events lately. I care about how the world is doing, not just our country, so it’s going to require some significant energy to schedule time to read the world news from good sources. Part of the difficulty of my health is that I have far less energy (or spoons, for my Spoonies out there), and sometimes that makes it difficult to find the mental fortitude to handle the stress of the news; whether it affects me or not. I have to protect my mental health so that I can get up every day and hopefully at some point do something for other people. Lately, our world news has been heart breaking and I have to save the “spoons” to handle it.

With this in mind, I think I’ve got to schedule a small amount of time daily to get caught up. Another difficulty is that I’m just busy. I have a job daily, and since it’s a physical job I get worn out easily; the rest of my energy goes to cleaning my apartment, taking care of our cat and my two snakes, basic hygiene, and an attempt at having a healthy social life (which includes making gifts for babies of friends and family because that makes everyone happy).

While I think about all of this, it makes me think about what I’m capable of, what I don’t want to miss out on, and what experiences I’ve had that I didn’t think I’d ever have, or would never have again after getting sick. With all of this in mind, I decided to make a bucket list. It’s going to be long, and have all the little things too. If you make it through it, or if you don’t, comment with your own bucket lists! I want to see what other people value in life experience, and what people think is interesting. Especially, if you’re a Spoonie or even if not, let me know what experiences you’ve had that you’re not sure you’ll be able to have again, or things that you wish you could do again even if you know you probably can’t. I hope some people comment because even if in the chronic illness community there’s a feeling of “there’s so many basic experiences I’ve lost” or “no one will care what my bucket list is because I’m so limited”, it’s also important for us all to know and remember: your life matters, what you do, what you can do, and what you want to do, matter. It doesn’t matter what it is, or how it compares to someone else; all that matters is that you do something with your life, even if all you can do is think thoughts, and read blogs from twenty-something college students. You’re alive, you’re making it through one moment at a time, and that has importance.

Here’s my bucket list:

  • Learn to ice-skate, at least well enough to not have to think about it too much.
  • Get my own bow and crossbow and practice archery more (get a bullseye 90% of the time)
  • Learn to use, clean, and fire a handgun proficiently for sport in a range. (I’ve done this a bit with a marksmanship class, but I’d like to go for sharpshooter status)… (I am pro gun for sport or appropriate self defense, but I feel regular background and mental health checks should be required)
  • Learn to crochet
  • Learn to make my own clothes
  • Learn to tailor clothes
  • Learn at least two more languages fluently (I have had introductory lessons on ASL, Russian, Spanish, Japanese, and French, and would like to learn more at that level but I do want to be fluent in 3 languages)
  • Learn to paint and draw at a higher level, and sell a painting
  • Go on a haunted/historic tour of America
  • Run my own Etsy store
  • Have kids
  • Get married
  • See a panda in real life
  • Gallop on a horse again
  • Visit Japan
  • Visit New Zealand
  • Write a book
  • Visit the grand canyon
  • Do a flip
  • Do an aerial
  • Do a butterfly twist
  • Drink Armagnac
  • Dress up in clothing for the era of a play/show I’m seeing (a plan made my one of my close friends that sounds like so much fun)
  • Have my own greenhouse
  • Choreograph a dance that I feel comfortable sharing with people
  • Learn to play guitar relatively well
  • Visit the Harry Potter part of Universal Studios
  • Go on a roadtrip with my best friend and just go wherever we want without too much planning (this needs more funds than I have at the moment)
  • Have a job that pays enough where I don’t have to worry about whether I have enough money to pay bills if I have a surprise expense
  • Learn how to dance en pointe
  • Learn to hold my breath for 5 minutes (I’m told my grandfather, who was a navy Frogman, could do this)
  • Get my hair dyed blonde
  • Learn to skateboard
  • Learn to snowboard
  • Write my own song
  • Own my own piano
  • Learn to play the cello
  • Get flexible enough to do the splits both ways

I think that’s everything for now. There might be more later, there might be less, or I might be forgetting something. But maybe that’ll tell you all a bit more about me, and reassure you that bucket lists don’t have to be extreme, dangerous feats like skydiving. It’s your life; set your own goals, ones that make you happy.