Diamond Headache Clinic Slideshow

This post was requested by Diamond Headache Clinic. I recieved no payment to post it. I have read through the information and I think it would be a good resource for people who read this blog. I am not and have never been to the clinic and will always recommend anyone to look up reviews and research a medical facility before visiting them for treatment.

I hope this slideshow on types of headaches children may suffer from is a helpful resource!

Presentation courtesy of Diamond Headache Clinic

If the slideshow fails to embed, you can view it here

From Start to Finish

What’s the best way to manage time? How do you organize your own ambitions and interests? Do/did you just pick one to focus on and leave the rest behind? Do you do a little bit of each every day or week? Do you master one and move onto the next?

I think it’s safe to say I’m an organization fanatic. I love trying new ways of organizing my things and my time. I love filing at work. I love sorting out my things and folding clothes and arranging items. I love trying new time management apps and making lists; you get the picture. Anyway, my whole life, I’ve always made it my goal to improve in every aspect of my life. Lately, due to my graduation coming sooner than expected, and the added fact that I no longer attend classes, I’ve needed to rethink my time management. I’ve got to consider what I want to do for my future career-wise and with my hobbies.

I’ve been feeling like my old method of doing a different hobby/endeavor each day is failing me in terms of my potential. So, here’s my new plan:

Start something. Finish it. Move on.

Whether that thing is beating a videogame, learning a language, getting my body into shape enough to do something specific, writing, knitting, sewing, etc…

The only added rule is I also have to maintain the cleanliness of our apartment, as well as keep up with daily responsibilities and maintain things I’ve learned or achieved already. What’s the point of learning a language if I forget it a month or two later?

This is the way I’m going to try things for a while. Recently I’ve been trying to beat Witcher 3: Wild Hunt for PS4. You can check out my YouTube channel for those broadcasts. Then I’ll do something else, finish it, and move on. I hope this new way proves to be more beneficial. The way I’ve been doing it seems to have downsides.

In K-12 school, the worst part of the way we do it in America, is there’s always a review time which ends up becoming a “we’re learning it all over again” time. We’re thrown so much information, and the focus pinned on testing so much so that students often do rote memorization just enough to remember information for exams and then it’s forgotten in a night. I can’t tell you how many times myself and students I know spent cram sessions trying to “learn” the material to ace the exam. It doesn’t work and our teachers know it, but the system is broken and that’s how we learn here.

My way of jumping between tasks feels a bit like that: I don’t finish learning as often and I have a lot of half started projects which I’ll just have to restart later because I’ve forgotten what I was doing. It’s my little experiment; I hope it works.

It’s about 4:00 AM at this exact moment and I’m being kept awake by my cardiovascular system. Since Christmas, possibly longer, I’ve been struggling with high diastolic blood pressure, and elevated systolic pressure. My diastolic, at least when we’ve managed to measure it, has reached 99 mm/hg and that one saw me in the ER on New Years Eve pretty much exactly in the window of 11:30-12:30. My arrhythmia and tachycardia have been severe as well.

Since then, I’ve been trying to rest and keep my pressure down. I’ll be seeing a cardiologist soon – the first one since I was asked to leave the disautonomia clinic I was in due to my refusal to complete a test that would’ve made me radioactive for a year and raise my cancer risk. I’m worried it’ll be a repeat of my past experiences: a doctor using me as a guinea pig instead of helping me live my life as comfortably as possible. But, I’ve heard good things, so I’m hopeful.

As I’m lying here, I’m wracking my brain for what else could possibly be wrong if it isn’t a genetic predisposition, stress, or my conditions causing the raise in blood pressure. Could be an infection, or maybe a virus, or an unusual imbalance in electrolytes…. but more likely than not, as usual for me, it’s probably just my body doing something new. And that’s frustrating.

I was born about 3 months early, and we’ve got this running hypothesis that being so early made my body and nervous system a bit different than most. A more hypersensitive, vulnerable system to outside stimuli – including stress and the normal passing of time. I have zero non-anecdotal evidence for it, but I don’t think we’re too off.

If we aren’t, is this just my body failing me? Did one day come along and my body decide “now we’re gonna do migraines” and then a few years pass and it’s “screw migraines, muscle twitches are the new thing” then “twitches out, gastroparesis in” on to “time for high blood pressure!”. I’ve dealt with a lot of random, and annoying problems, but none of them posed as much threat to my health as an extended time with high BP. It’s frustrating, and a little scary, to see how quickly things can change (and it’s not the first time).

I could lay down and be miserable about it, or I could spend all my time thinking about the good things in my life, but I don’t think either of those is healthy. They might work for some, but for me personally, I prefer the middle ground: Rest, and accept the negative feelings that show up, and remind myself that it could be so much worse.

I don’t want to tell anyone else how to handle their own personal health experiences; this is just how I do it.

Tomorrow, my body could decide to work in a way that doesn’t make me feel sick, or it could get worse. I’d prefer to just move forward and hope for the best while preparing for the worst.

Perspectives

Adulting is difficult. Especially when you get the feeling you’re half-in, half-out, of the whole adulting thing. Add in chronic illness that makes you want to curl up and sleep all day like you could when you were 10 and there’s a lot of mixed messages there.

It’s got me thinking about different perspectives – which can change depending on who you are, what you do, and your level of confidence.

This week has not been my week. Between issues with my health, studying for finals, difficult moments at both jobs, and some small problems with friends/family that add up, my perspective hasn’t been great. I’ve started doubting my ability to do things which, previously, I’ve felt extremely confident about. Mistakes are normal, but I’ve made enough this last week that it starts to add up to a lot of low-confidence moments.

I like thinking about human perspectives, and opinions. Everyone is different. Everyone has a different background. For example, if a person is told multiple times thay they’re doing a great job, they’re bound to be more confident and perhaps make more choices that continue to display their abilities. If a person is constantly given negative feedback, or none at all, they’re more likely to think they’re incapable and stop trying.

I wonder a lot about the differences between perspectives on self vs. perspectives on others. If you’re overly confident, do you believe everyone else is less capable than you? If you’re under confident, do you believe you couldn’t possibly do a better job than someone else?

I love my job, and I think I’m relatively good at it, especially for never having done something like it before. But, others might disagree, a little, or a lot. My bosses or coworkers might think I seem awkward, or full of myself, or completely inept. The same situation and facts looking different to different people.

A child who was raised to read, or play music, or do mathematics at a young age might believe they’re behind in their skills even when they’re ahead of their age group, while everyone else is sitting there wondering how they can’t see it. A child raised to focus on different things such as family care, and working, instead of topics often focused on in school, might think they’re awful at learning compared to the first child, when in reality they may learn just as, or even more, quickly.

Sometimes it’s hard to be sure whether we’re measuring up to expectations, simply because everyone may have a different opinion. When I think about it, especially when I’m feeling discouraged, I try to remind myself of that difference. Then I remember to focus on doing my best, because that’s all I can do. Asking questions, working hard, and learning from my mistakes is how I want to live my life. There will always be people who find flaws in me, just as much as there will be people who see how hard I’m trying, or maybe the potential they believe me to have.

In the end, if I stick to always trying my best, I’ll end up in a place where I’m appreciated and doing something I’m good at, or at the very least love enough to continue doing in spite of my mistakes. And that’s all I can really ask for.

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.

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.