Ambition

Every day for me with chronic illness is new. Every day as a person is new. I also feel like a circus juggler half the time: a ball for illness, four balls for four jobs, a ball for friends and family, a ball for hobbies, a ball for this blog, a ball for my YouTube channel, a ball for each Instagram page. So much to juggle. When I get overwhelmed, ultimately I have to throw some away. Recently I left two jobs, and I’ve decided to treat my social media as a secondary goal. Posts, and content will come at a much slower pace.

To me, those choices simultaneously lift a weight off of my shoulders, and break my heart. No matter what, I have some juggling balls I can’t drop, and that means giving up some that I love. I know I’m not the only one who feels this way, it’s pretty normal. But it never fails to make me feel like a quitter.

I’m all together a perfectionist, ambitious, and a firm supporter of maintaining one’s health and well-being. Unfortunately, my body is insistent on me dialing back my ambitions a little.

I want to be that person, the one who can do all of her jobs on time and correctly. The one who can show up for all the social gatherings. The one who can do all the housework, errands, and cook all the meals. The who can ace all of her classes and never miss a school day. But, that isn’t reality, for anyone, and especially not me.

I make mistakes, I get tired, I lose motivation, and my body shuts down on me. Nothing goes as planned, and people are rarely as understanding, or as helpful, as the ideal. That’s life. That’s reality. It’s the way things are expected to be, by everyone. No one can do it all. No one is perfect. No one can do everything without help.

It’s hard, being ambitious and being sick. There’s the constant question of: “is this really my limit? If I didn’t have this illness how much more could I do? How much am I missing out on?” The answers are, it is right now, a lot, and more than I’d like, in that order.

Every missed party, every disappointed friend, every job left undone, is a crack in my confidence. I worry if I’m really going to be able to do the whole “adulting” thing.

Then I go out and actually do it.

And I realize, if I’m stressed, and sicker from the stress, and missing out because of that…. wouldn’t it be better to just do the things I know I have time and energy for? Adulting is just doing what you have to do. Pushing through the stress, being responsible, and planning your time wisely. And I can do, and have done, those things.

I don’t like to spend too much time away from some kind of work/hobby. I like keeping my hands busy because it makes me feel like I’m using my time wisely (and partly because that’s how I deal with being hypersensitive and avoid sensory overload). And time always feels like it’s moving too quickly. And it is, but that time passing is not unique to anyone:

“The present is the same for everyone; its loss is the same for everyone; and it should be clear that a brief instant is all that is lost.”

~Marcus Aurelius; Meditations

One thing about going through sudden illness is that it reminds you how quickly things can change. In an instant you can lose your ability to eat, walk, or breathe. In a moment you could lose large parts of your life. So I spend every moment trying my hardest to make the most of my time. Trying to avoid life’s bullshit and pettiness and just live my live. I don’t always succeed. But I always take a good memory from every experience, good or bad. Even if all it is, is a warm cup of tea, or a brief moment of silence in a shouting match, or a warm heater in a cold room. I try to remember that even when I’m doing nothing, I’m still appreciating my life.

Leaving two of my jobs sucked, but the time and health I’ll gain from that choice will let me enjoy other things I like doing. Sometimes being ambitious is great, because I throw myself at certain kinds of experiences. Sometimes it’s not so great because most of my stress is pressure I put on myself, to succeed, to help, and to grow every day.

No matter what, I’m never going to stop being ambitious in my own way, and I’m never going to be able to do everything I want to. But, it would be pretty boring if I did everything I wanted as soon as I tried. Life is full of many brief moments, and we need things to fill them. And if I can grow in each moment, then I’ll feel like I’ve lived my moments to the fullest, illness or not. And if through my life I lose more of my health or abilities, then I’ll just have new goals, new juggling balls, and new moments.

Updates: Things to Come, YouTube, and Why the Delay

It’s been a bit since my last post here on WordPress. Lately my focus has been on work, school, and wrapping up some YouTube projects. I’ve got four jobs now, which has been an interesting juggling act with school.

What’s coming up:

  • A blog about what tattoos have meant for me and my roommate, especially in maintaining our mental health.
  • A blog about fibromyalgia and other chronic illness from the perspectives of people who have them. This particular blog may take some time since I’ve got to sort through surveys and statements.
  • Some YouTube videos of small holiday projects, sewing projects, and more videogames and puzzles.

What to do in the meantime:

If you’re looking for some things to do, there’s my own social media, as well as some channels I enjoy.

  • My Instagram: Lockstockandspoonies
  • My Facebook
  • My YouTube Channel
  • Our Cat’s Instagram for some cute kitty pictures: Yurithechainchomp
  • The podcast “Terrible, Thanks for Asking”
  • The Frey Life’s YouTube channel. Mary Frey lives with Cystic Fibrosis. Her and her husband document their lives and give motivation. They’re a Christian family and Mary says she finds much of her strength in God. Her posts have an uplifting tone.
  • Healthcare Triage. A good place to go if you’re looking for information on how testing and research works, different health risks, and financial information in terms of healthcare. They’re a good overall healthcare channel.
  • SuperKian13. Kian Lawley’s YouTube channel. Some good fun. Pranks, games, and other lighthearted stuff.

Thank you for your support, and I hope you all enjoy the upcoming content!

Walking Away

I saw a post on Facebook highlighting the importance of knowing that “it’s okay to leave”. I don’t know the OP but if you’ve seen it and know who it is please comment or email lockstockandspoonies@gmail.com so that I can cite them.

The post talked all about it being okay to leave uncomfortable situations. It’s okay to leave abusive or toxic relationships. It’s okay to leave a school or job that isn’t working out and is making you miserable. It’s okay to leave family dinners, friend gatherings, competitions, dates etc… if that thing is making you so uncomfortable or miserable it causes you to fear for your safety or causes damage to your mental or physical health. Hell… it’s okay to leave because you want to. It’s okay.

What I did want to talk about is what that means to me personally, and maybe you feel the same way or maybe you don’t. I want to hear other’s opinions:

My close friends and family know me as a “100% gamer”. I want to beat every level, side quest, and storyline. I want every prize. I want every costume change and trophy. They also know I rarely actually do that. Partly because I have limited time and am not always good enough. Partly because I’ve learned to walk away from things that expend more of my energy than they’re worth.

I’ve spent days on games that I no longer enjoyed, just to complete a goal. I’ve “gone down the rabbit hole” hundreds of times – failing to eat, drink, sleep, or take breaks. I’ve gotten so frustrated at a game that it’s eaten at me for days.

It took years for little (okay… younger little) me to learn that it was okay to go to bed at 1 AM, instead of 5 AM without a particular achievement earned in a game. It took countless uncomfortable meetings and miserable days before I learned it was okay to switch the direction my life was going in to a completely new one – to change my college major, decide to leave research, to start working at a job I love instead of one everyone approves of.

So far, I’ve never regretted leaving a situation when I wanted or needed to, but there are countless moments I regret enduring instead of doing what was best for me.

That said, I also believe in putting 100% in. I don’t leave something just because it’s a challenge, or I had one moment where I messed up, or because of one person whom I will rarely interact with. There’s this line in the sand that marks the territory between quitting, and wisely abandoning hopeless causes/physically or mentally harmful people and situations.

My goal is to figure out what my own personal line is, without judging someone else’s.

I may not have a problem with someone telling me that what I just did was stupid, but another person might be deeply affected by it and that would be their line. Everyone is different, have their own past experiences, and their own traumas. It’s a very personal decision to walk away from anything, and while others can give their advice and support, ultimately it’s the individual’s choice.

To me, the important thing is: your life is your own, and no one should ever have to put up with things in their life they’re not comfortable with.

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!