Me and Food

As a Spoonie, my challenges are unique because no one’s life is the same. One aspect I know isn’t unique is the anxiety that comes with eating during or post-gastric illness. It’s pretty common for me to find people who relate to food avoidance due to illness.

When I had my first bout  of illness, I was really afraid to eat at all. I spent months in bed, fighting nausea and eating made me feel so much worse. One bite of food meant going from sitting upright, to curled up in the fetal position kinda wishing I could die. Literally. I would tell my mom a lot that I wanted the hospital to just give me sedatives so that I could sleep through everything, or I was really close to just giving up on life. Simple things like sitting up, or staying awake for more than a couple of hours became complicated and difficult. I took a lot of hot baths to soothe my stomach, and went days with minimal food.

Goldfish crackers probably saved my life.

They were easy to digest, so I didn’t get sick from eating them. I’d go through a large seal-able bag a day of the whole grain baked kind. The salt probably helped keep my electrolytes up too. Aside from those, I could eat a little bit of apple sauce, and white bread (wheat bread is still a no for me even though I used to eat it daily), plus juices and broths. Some days, I’d get so hungry I’d give in and ask for an Arby’s classic roast beef and a sprite, eat it all, and then regret it. But, I was really lucky to be born with a strong stomach, so I actually kept the nutrition from everything I ate instead of vomiting. That in itself was probably torturous just because if I had gotten sick I probably wouldn’t have felt nauseous anymore. The reality is, that torture meant I didn’t need to be hospitalized or need a feeding tube or TPN (basically IV food).

Processed food was the best for me, because I could actually digest it. Before my gastroparesis diagnosis, which came long after my Inappropriate Sinus Tachycardia/POTS diagnosis, I was using trial and error to find foods I could eat. Afterwards I was able to use what I had found, plus some good advice from the doctor and other gastroparesis patients, to find a better diet. I got really lucky, when CBD was legal to use, it, plus other enzymes I bought on Amazon, helped me eat enough to train my system to digest better. My particular type of gastroparesis is actually reversible and CBD oil was a huge help. I was really disappointed to see it become illegal in my state and am hoping that in the future that might get reversed.

One thing that helped me get through it was actually really problematic for my digestive system: laxatives. Because digesting food was difficult for me, emptying my system stopped me from being nauseous. This had obvious problems: I typically went to important events with zero food in my system and no water, and it wasn’t helping me heal. But, when it came down to helping me have some semblance of life, it was almost necessary for me at the time. Then I was introduced to CBD oil by a friend and I could actually live my life again. I could eat, and go out, and didn’t feel like I was half-living.

The one thing that stuck was that I still have go-to foods for days when I have plans. Goldfish crackers, Cheese-its, candy, processed food, soups, and Pop-Tarts. I eat a lot better now, but there are still times where I’m not getting proper nutrition, or enough fluids. When I do feel sick, I often make it worse by failing to eat or drink anything, just because I’m afraid of getting sicker like before. I also have a lot of anxiety about getting sick. When people say they’ve had the stomach flu, or even if someone totally random vomits and I don’t know why (could be a hangover, or food poisoning) I get a panic attack. I work around this a lot and am still in the process of getting through it so I can eat normally without worrying so much.

I was extremely lucky to have very mild, and reversible, gastroparesis. I’m lucky I even get the chance to eat again. I used to make big lists of foods I would eat if I could, and now I can eat most of them. Some I cannot because we found I have a lot more food allergies than I realized, but the list of things I can eat is still extensive. I learned a lot about myself and even reduced my instances of  IBS just by learning what foods irritate my gut. Moving forward I hope someday I can eat with zero nausea all the time, and not worry so much when others are sick.

Headache and My Daily Life

I haven’t been very active online lately, or at all really. This post is just to increase awareness of what daily life is like with chronic illness. Everyone is different, some people have a much harder time than others; I’m relatively lucky but I still think it’s important to share the minor problems too.

Lately I’ve been dealing with a near constant headache. I’m not sure what’s causing it, if it’s a migraine, a result of my blood pressure jumping around so much, or if I should see my doctor. If it continues much longer I’ll definitely be seeing someone. It’s been making it difficult to focus, think straight, or get things done.

My daily life has been focused on maintaining daily exercise – a light routine my cardiologist would like me to do to increase my body’s ability to respond to positional changes – going to work, and keeping our apartment clean.

If you follow my YouTube channel, you’ll notice all of my videos have been of me playing Witcher 3 on the PS4. It’s been easier to do that but lately looking at a screen has been painful.

I’ve tried increasing my fluid intake, acupressure, lowering my stress, etc… Nothing helps. I’m beginning to think that, just like pretty much all of my health issues, it’s just another annoying symptom I’ll have to learn to live with.

That’s the reality for most spoonies: can’t fix it, have to live with it for who knows how long, maybe forever. It’s frustrating to say the least, and depending on your situation and symptoms, it can be devastating to your goals or just your general wellbeing. Physical pain and discomfort has a negative affect on mental health as well. It’s hard to stay above the line where your symptoms create a steady decline in health.

I hope the symptoms I’ve been dealing with get better as I try to strengthen my body and endurance, but it’s definitely setting me back in my own personal progress in life. I’m just going to keep moving forward and tackling problems as they come. Hopefully I’ll have more content for everyone soon.

In the meantime, I’ve been trying to update our cat’s Instagram @yurithechainchomp and soon I’ll be compiling a playlist of the best witcher videos with details as to where to find things. Good luck to anyone dealing with their illness more than usual lately, and best wishes as we move into spring!

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.

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.

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.