Mindful Impact

Mindfulness. It is just amazing how big of an impact our thoughts can have on our bodies, on our ability to heal. It’s important that you fill your mind with optimistic or positive, healthy thoughts and your life with all of the things that have always brought you joy, all of your hobbies, and the people who put a smile on your face.

Today’s technologies allow for incredible connections; there is a huge online presence of “spoonies” (as we call ourselves) all over instagram and facebook, both individual pages and group pages! This resource is a HUGE gift to those of us who suffer from severe illnesses that leave us homebound or bed bound with little to no social interaction, but there are cons to this as well.

When you surround yourself with individuals who are sick, and you are sick and have been for a long time, it begins to feel normal. You start to forget what it feels like to be healthy, to be a functional, productive person. When you start to feel that way you know it’s time to reevaluate your perspective, remind yourself of what makes you feel like YOU. Not sick you, not healthy you, but YOU.

Be mindful, know your limits physically and mentally. Will all of these posts from other sick chicks –  some of them trending towards competitive over who is worse off, some who seem to thrive off of the attention from being sick – make you focus too much on the sickness? Does life revolve around illness? Because it doesn’t have to; no matter how sick you are, you are more than your illness.

There’s a lot more to mindfulness than this, but it’s a start. I encourage you all to focus not on your illnesses, not on symptoms and treatments and bad doctor visits, not of scary unknowns and dooming diagnoses, but on all of the aspects of your life that were there before illnesses, that exist independently from illness, that bring you simple pleasure, joy, distraction, love. Positivity. Light.

Mermaid Soul

When I close my eyes, I go to the peaceful, beautiful underwater world at the lake. It’s dark and mysterious, the lake floor just deep muck squishing between my toes as I push off to surface like a dolphin, emerging just to take a breath before going back down, being engulfed by the water. You can hear the motor of boats before you see them, it is a soft, rhythmic stutter that comes and goes with the small waves. I could swim like that all day, every day and never be tired of it.

And then I’m in the clear, pure water in the rivers I swam in as a child, always searching for treasures in the slippery rocks under my feet, daring to go a bit farther, a bit deeper, conquering the current, being one with the water. There’s moss beneath my feet, the rocks I hit with my knees, and the little pinchers of crayfish. I find the deepest part and disappear for as long as my lungs will let me, sometimes swimming away and seeing if my family noticed how long I was gone, if they worried at all, other times just sinking into the water and just being one with it, listening, feeling the cold water and the hot sun, washing my problems away, down the river they go, I am at peace.

Chlorine. Salt. Sweat. The pool, the water I spent so much time in, practicing my strokes, competing, loving and hating it at the same time. I always seemed to tire before others, my heart rate was always higher, and even when I took my inhaler, I couldn’t breathe, but still, it was my passion. Summer mornings diving into the cold, cold pool, a shocking wake up call for swim team practice, back and forth, often toe to finger close to the person before me, the person behind me. When swimming for fun, not practicing, I will disappear under the water, swimming without coming up to take a breath, going deeper and deeper, testing out my lungs, happy and at ease.

One day I’m going to be free of central lines and feeding tubes and I’m going back to the water. I’ll live on the lake, I’ll travel and see the incredible beauty of the underwater world through my own eyes, scuba diving, snorkeling, swimming with dolphins, maybe hippos too – just no snakes. ☺ I can’t wait to return to my life as a mermaid, feeling the water, seeing the beauty, feeling no pain, just peace and happiness, such simple things.

These memories are worth gold, they’re what I need to have faith and they inspire me to make my dreams come back to reality. A piece of my soul belongs in the water, the thought of return comforts me when I need an escape, being my happy place when I need to disappear, and gives me hope and drive to find my way through my trials and back to my underwater world.

When Life Gives You Limes

People often use the expression, “when life gives you lemons” when things aren’t going quite right, you’re likely familiar with the phrase? Well, humor me as I explain why I’d like to adapt the statement to, “when life gives you limes.”

In my opinion, lemons are tasty and you can do so much with them, many options being super simple! For example, of course you can make lemonade, then there is lemon cake, lemon bread, lemon cookies, pie, and more! I mean lemons are great for tea, detoxing, or simply put in your water. Lemons are just so handy, but limes? Limes are a little bit more complicated, they’re slightly more sour and although you can use them in drinks and recipes, it’s not quite as common, kind of like chronic illnesses – complex and uncommon.

That said, I have quite a few limes in my life. I’ve been diagnosed with over 10 chronic illnesses, a handful of which are seriously debilitating and progressive. I’ve had to take medical leave from the school of my dreams, now having watched my classmates graduate without me, and put my future goals on hold. Because of my symptoms– mostly nausea, pain, and fatigue– most days I am not even able to leave home and I spend majority of my time in my bed resting and sleeping.

I have new limes thrown at me every time a doctor gives me a new diagnosis, every time a treatment doesn’t work, and every time I wake up feeling worse than I did the day before. However, I’ve learned to take these limes and use them to help me find all of the gifts in life, all of the things that I am so thankful for. When you’re given challenges, sour moments, it really teaches you to be so much more thankful for every little moment or object that makes you feel joy.

Some of the sweet things in my life that regularly help me get through the sour moments include my dogs, Baxter & Dexter, my family, good music, and my online support network. There are also little gifts day to day like a 75 degree day, a special visitor or getting something in the mail, being able to take a walk, an Epsom salt bath, taking a drive and seeing pretty scenery, etc. Lots of small things bring me joy, and I am so appreciative of every happy moment I am given.

I’ve had a lot of curveball limes recently, broken tubes, line infections, flare ups of pain and nausea, exhaustion, and doctor troubles to name a few, but I’ve learned to put up walls that keep all of this from affecting me too much, only allowing through the smallest amounts of stress or worry possible – the last thing I need on top of my illness happenings? Extra limes.

Learning to filter out some of the extra stressors, even the smallest things you may hardly notice can make a big difference in the long run. Hold on to every happy moment, every simple pleasure, and let go of negative energy; hold no grudges, and never go to bed or leave your loved ones angry. Forgive, love, laugh, and remember not to waste precious time on trivial issues. When life gives you limes, take a moment to find your own sweet moments and happy thoughts, play your favorite song or cuddle with your dog, text your best friend or your mom, take time to express yourself, share your love and gratitude, spread the joy in random acts of kindness, random words of affection. Life is too short to be sour.

 

The Gift of Normalcy

I had a fabulous childhood; I was loved unconditionally, I was supported by my parents in everything I did, and I never felt alone or scared or underappreciated, I always had everything I needed and 99% of the things I wanted 😉 My parents always encouraged me to try new things and find whatever it is that makes me happy.

I’d always been a small town girl, good student, decent athlete, volunteer, etc.; Well, I wanted to be more than just “normal,” more than just small town, so I thought going away for school or finding a job that could set me up for working outside of my hometown & granting me the (financial) freedom to live a lifestyle that I thought was important to me might be my answer.

Like most kids – at least I hope it is this way for most – I was always told I could do anything, be anything or anyone I wanted to be when I grew up, and I embraced that thought and always dreamt about what I wanted in years to come. At 3rd grade I wanted to be a writer, then a cook. In middle school it was a lawyer, then an FBI agent or a behavioral analyst like those on Criminal Minds, and finally, by college, I wanted to be a behavioral therapist focused on autism.

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Did I mention my gift for style?

After falling ill and having two severe “flare ups,” the second of which never passed, has guided me into a whole new set of goals for my lifestyle. Instead of searching for my door to an extraordinary life full of adventure and expensive brands of clothes or my dream car – red convertible incase you’re wondering – I want to focus on something so simple – I want to find my happy, I want to make the most of my NOW, and that’s not money or material, that’s my people, my dogs, my artwork, my small adventures just driving a mile to see the dam in different seasons or try to see the eagles nesting, the bears someone spotted down the road, or just the ice on the trees or the flooding over the bridges.

I went from planning every part of my future and searching for all things perfect to searching for all things normal.

I want to be able to enjoy all of the small things, I want to be able to say yes every time I’m invited to go out with my sisters, I want to be able to make new friends who I can say yes to when I’m invited out …

Hell, I’m not even asking to be able to eat or drink a coffee or a martini, I just wanna go.

 

Chronic illnesses leave you with so little control, losing your ability to make all of the small, simple decisions that most people don’t have to think twice about can be an incredibly difficult thing to adjust to!

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Part of this adjustment is that severe chronic illnesses require just about 24/7 care, as an adult, so alongside the control, you lose any and all modesty and privacy you had left. For an introvert like myself, that’s no easy feat to come to terms with. I’ve never liked being the center of attention, & being sick is not a super easy situation to deal with when you’re shy, I mean just having people ask me how I am all the time has been tough, it’s a balance of how much to share.

It’s a quick second to think through — who is asking, do I know them? Do they know my story or are they just asking b/c that’s how you greet people? Do they want a real answer or are they being polite?

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I started this blog to help update people on my own health, but also to spread awareness so that people know how to handle situations like this, and I hope it is helpful for other spoonies but also for care takers and loved ones who are looking for help and advice so feel confident in your ability to support your loved one during their journey.

I sometimes get an urge to do something that normal people my age should be doing, and sometimes it might be a push for me, maybe even a risk, but sometimes a girls gotta do what a girls gotta do.

These times are those in which I don’t need questioning, doubt, or guidance. I don’t need it and I don’t want it, I just want support, I want love, I want encouragement. I want you to be happy that I am doing something that will make me happy, and we can deal with the repercussions as we go 😉

So, what’s the greatest gift you can give me? The best way to talk to me, best way to treat me?

Treat me like you would treat anyone else.

I can’t speak for every spoonie/tubie personally, but I know that personally, but learning how quickly things can change, how abruptly you can lose the ability to do your favorite things, eat your favorite foods, go out and take advantage of your youth, or even just care for yourself you often reevaluate your perspective and priorities.

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When you hear my name, I don’t want you to think of “oh that poor sick girl,” or “oh what a shame, she was doing great things.” When you hear my name, I want you to think, Rachel, Rachel is going to do great things, Rachel is fun, Rachel is creative, and Rachel is making a difference for others. Rachel is sick, but Rachel is capable. I’m tube fed, IV saline dependent, and I use a wheelchair, but I am ABLE to be me. I have good days, I have motivation, I have goals, dreams, hope, and feelings. I’m just like you, but I have a whole different, deeper understanding a perspective.

I don’t need to do everything in the biggest, grandest way. I don’t need to make a ton of money or have the biggest group of friends. I don’t feel a need to stick out or be recognized as anything more than just being me. Being Rachel.

Thoughts 6 Years In

I often feel that when I put myself out there and say, “Screw you, Ehlers Danlos Syndrome (EDS), screw you gastroparesis, I WANT to do this, I’m going to do this,” and I actually DO,  my body comes back at me saying, “uh, hey now, who gave you permission to do that?”

When I do this, I try to compare pros and cons, are these things I want to do worth the payback that will come my way? There are so many things I want to do, and I’m an adult so I can do whatever I want, right? No grounding or taking my phone away, but if I misbehave, my body can punish me in a much harsher manner than my parents ever would.

Yes, chronic illnesses are brutal. Yes I am exhausted and utterly uncomfortable, but now, after years and years of searching for answers or simply searching for relief, I have to learn to care for body and mind, not pushing myself to a point of danger or past a “safe” space health wise, but I also have to embrace what I DO have and what I am capable of. I have to hold onto every bit of the true ME without forgetting where I am in my life right now.

I recently had a bit of medical excitement (a bit of a scare) when a new symptom popped up from out of the blue, but I woke up and honestly thought very little of it aside from knowing I need to be mindful today, just watch for symptoms I don’t usually experience or other warning signs!

So why am I becoming numb to symptoms or complications? Because I’ve seen it happen, because I have hope, but not expectations? I know that many don’t understand that, we all have different ways of coping or different perspectives on the meaning or the terminology — “hope” is relative, similar to grief, we all go through this process with different coping mechanisms. I know that EDS can lead to all sort of complications, it sometimes feels like there’s no end to the diagnoses, every year brings another symptom, another doctor, another diagnosis. I’ve watched it happen to girls just like me; heck, I’ve watched my own health continue to “D&D: DETERIORATE & DIVERSIFY,” so I guess you could say I’m not impacted or fearful in the same way that many healthy people would be when something like this occurs.

Does this lack of reaction represent a lack of hope? Have I built up an immunity to “human” emotions? Do I live life expecting the worst? Fearing or expecting to die? No, I don’t. Though I am forced to consider more seriously some of the not so fun parts of life more than most individuals my age, I don’t plan on leaving y’all anytime soon

So, then, is it a coping method? I suppose, probably, it is. While I prepare for all possibilities, there’s a wall there to protect myself and those around me. There’s no way for someone to focus on something of this magnitude 24/7 without going downhill quickly, so it’s important to me not to let that happen. I don’t want to torture myself mentally by focusing on my physical state all day, every day, but more so, I don’t want my family to have to go through that day after day. They have sacrificed and suffered enough throughout my journey- through thick or thin they are always by my side, but if I can spare them any grief or burden, I will do that. No one should suffer from chronic illnesses like these, but if I have to, I at least want to do what I can to protect others from extra suffering.

Chronic illnesses are nasty and powerful, but they don’t always win. I’m not out of power yet, I have a lot of hope left in me, and even more so than that, I have a will to live. I have a heart that craves more love, a soul searching for MORE adventure and experience, and eyes that WILL get to see the world.

My body may protest, but my will to live and my love for life, my love for simplest of things and the most wonderful people (& dogs) will power me through anything. I believe in the power of love, love is stronger than any fears I come across in my journey, and I am not lacking in love.

(I am single, though, just FYI 😉 )

I have a complex, difficult life, but it is filled with so much good that makes all of the challenges and trials, all of the terrible symptoms and times of questioning or doubt seem so small and unimportant. I am surrounded by love and unwavering support not just from my (biological) family, but also from the incredible community that has continuously come together and shown what true family is. My family expands all the time, it crosses oceans and countries, there are no limitations, just love, support, and acceptance. I’m continually amazed by the incredible, valiant efforts that I never could have asked for or dreamed of and I am reminded often of the true values of life, of friendship, of open mindedness and a judgment-free perspective, etc. I am blessed, I am thankful.

I am sick and I have hardships every day, but I have hope, and I have dreams, goals, and motivation – so watch out world, I’m on a mission and it’s not to the doctors office – and probably not to stand up comedy either.

xoxo

New Years Thinking

Every New Year I like to think, this is my year. I look back on the last year, or really just on my journey in general, and I think of course of my illnesses and my desire to find a cure or a treatment that would lead me to a more “normal” lifestyle, but year after year that doesn’t come. This year, I’m not relying on specialists with new perspectives or treatments that will be approved by insurance, I am instead looking at myself and my situation and thinking how can I work to maximize my experiences and the value of my time? I may never have my cure, and I may not get rid of my medical devices, but I can make the most of the life I have, and now that I’ve been through all the tests and all the procedures and I’ve seen the biggest and the best doctors out there, and here I am, how can I help myself?

I have just as many goals and dreams as I did when I was 16 and healthy, but now they mean even more to me. I want to get back to who I was, who I am, as much as I can. I don’t plan to achieve all of my goals this year, but I think setting myself up with healthy goals and positivity, a hope for a fulfilling life, could be the most effective “treatment” I can have.

I want to be more active, both in a sense of being able to spend more time outside of my home but also being stronger and feeling more fit and less frail. I want to make friends who are here for me regardless of my health and all that comes with that.

I want to fall in love, I want to feel like I am loved and adored no matter what my stomach looks like, no matter what I can or cannot do, no matter what date night looks like. I want to know there is a person out there who doesn’t need to see past all of my greatest insecurities, but is understanding of all I’m working through.

There are so many places I want to go and things I want to do, and I want to be able to do it without limitation, but if I have to work around things, I will. I can’t do a lot of the things on the top of my bucket list right now – swim with dolphins, scuba dive, snorkel in the tropics, etc. – but I can work up to it. If I’m facing a lifetime with health complications, I’ve got to start embracing that and working with it even more than I do now.

It’s not as if I can pick up and go today, I’ve got a few things to try to manage a bit better before I go too crazy, but it’s only January 7th so no one is too far into resolutions, right?

I have to learn to push myself in healthy ways but form a relationship with my body where I am able to feel more control while still continuing to listen to my body. I’m going to start with keeping up with the blog, revamping and working hard on Newbie Tubies, and trying to be more active.

 

Happy New Year 🙂

Delivery Day

Ice ice everywhere! Our first bout of winter weather came to town this week, and it was enough for two snow (ice) days for the kiddos, pretty much the most exciting thing back then. Sadly, I’m no longer an exited 6year old whose biggest worry is whether or not there will be school tomorrow, and though I still love waking up to a winter wonderland, snow days are a lot different for me now.

I live in the woods, and my driveway is a gravel mountain itself, so when the weather is bad, we are often stuck here for as long as the ice is. This ice storm came through on a Wednesday night/Thursday, which of course, with my luck, is the day my medical supplies are sent out (Wednesday) and delivered (Thursday). I rely on all of these supplies to stay alive and out of the hospital. My entire week’s worth of food (tube feeds), hydration (IV saline), and the medications and supplies that are vital for keeping me going are in one, very heavy, box.

My home health/ pharmacy does everything they can to make things run smoothly, but they can’t/won’t send packages early, so during a winter weather storm like this, things can easily get lost or delayed. I received an email from my pharmacy saying the supplies hadn’t gone out on time and weren’t able to be delivered on Thursday, so it became a question of how long would it be until our driveway would be passable, giving us the chance to go and others to come.

That said, it doesn’t necessarily all ride on them, my network goes much further that that, and in ways some may not have ever thought to take time for Before. I received an unknown call on Thursday, and I was surprised when it was my delivery driver from FedEx! He called me to let me know he wasn’t running his route today due to the weather and the road conditions, but he saw my box and knowing how important it is, he called me personally to see if there was any way for him to get it to me. So even though he wasn’t working his normal delivery route, he took time to call and was ready to put forth effort to get that box – filled with those important medications and fluids to me in any way we could. How incredible is that? Just the offer was so genuine and an incredible inspiration, a true member of my team.

I guess I shouldn’t be too surprised, because this isn’t the first time I’ve had interactions with him—always positive ones. This man has always been incredibly kind to me. I’m almost always home alone during the day, he sees me hooked up to my IV pole and a total mess lookin’ straight out of bed, always trying to control my crazy dogs, but no matter what the chaos is, he is always smiling and helpful. You don’t come along delivery drivers who are always ready to do more, to push the job requirements and just be compassionate and accommodating, but anytime he sees an opportunity to be helpful, he is there.

Putting for that effort without being asked to is such an incredible gesture, I know not everyone would do that. I feel incredibly grateful to have such caring and empathetic people in my life, even someone who just knows I’m young and sick and get weekly medical supplies. There’s no limit to who can share and spread love and support, and I couldn’t ask for a better reminder of that. There are so many members of my medical “team,” and you probably don’t automatically consider a delivery driver to be a key member, but in bad weather, lost boxes, damaged product, etc., you better believe that these individuals are key to your treatments, your well-being.

In a time during which I am feeling a bit lost when it comes to doctors and support (aside from my fabulous parents <3), having these individuals who really do care and put forth such effort is an incredible blessing. This week I was reminded of that, reminded to appreciate everyone who puts forth effort into my journey, some of whom don’t even know they are participating while others are doing work behind the scenes that I don’t know about.

I urge you all to think about each member of your team, including all of your (kind/helpful) nurses, the x-ray /IR techs, and your pharmacy or delivery service, home health, etc. Think it through, make a list if you are as forgetful as I am. And then let them know you’re feeling appreciative! Bake cookies or write a thank you card, you never know who might be in need of a little appreciation.

Spread the love, and never underestimate the impact someone can have or how much just one small act of kindness can change the course of someone’s day.

 

Embrace It

Illness is not easy in any way, or for anyone. When your life is suddenly pulled out from under with little to no warning, and by something that no one, yourself included, has ever heard of nor can anyone begin to understand, boy does life change.

I got sick in high school, and thanks to some ignorant doctors, my parents were pretty sure I was going to be better in no time. I was a young female so of course the daily, crippling headaches were hormones and all the pains in my joints, nerves and ribs were simply growing pains, because as my lovely doctor said, “it’s normal for young women to be in pain.” Right. Helpful

Well when I got to 2 months of being unable to keep down most foods and was on homebound because I could hardly stand up from bed or be on my feet too long without passing out, nor could I eat or stay awake during school… I finally got admitted and got my diagnosis. Gastroparesis. What the heck is that, right? I don’t even think my doctors knew, because no one told me that it would change my life , forever.

I’ve come across so many medical professionals who have no idea what I’m talking about when I tell them about my health conditions…. EDS, POTS/Dysautonomia, Dysmotility/ GP, SIBO, migraines…. Is it so hard? Well maybe, but it shouldn’t be for doctors.

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My family was and continues to be incredible and supportive in every way they can – even if I don’t always want comfort or support for myself. My mom grew up in a family where the flu wasn’t a real risk, a fever was just to keep you flushed and warm, and complaining wasn’t an option. What’s a doctor, right? As long as you could walk and your eyes looked strong, you were good to go – dress nice to feel nice.

To the point, my mom quickly adapted and came through for me and after some rough times in the earlier years, we grew closer than ever as she became my home nurse doing anything from making and hanging my feeds and fluids, sorting my weekly meds, helping me shower when I can’t do it on my own, brushing my hair even though I’m terrible about it because it hurts… I don’t know what I’d do without Nurse Bibi.

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My dad and I have a different relationship, but it is so important to me, even if I have trouble showing it sometimes. He’s here for me no matter what, any time, any day. We go to out of town appointments and listen to fun music, joke around, etc. He helps me relax before appointments when he knows I’m anxious. He also lets me sleep or supports me when I want to do something else.

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That reminds me so much of my year round, travel swimming days when Dad and I would drive to the meets just the two of us because I was so shy and didn’t have friends on the team, but I got dad to myself and we had so much fun. Dad also taught me how to drive 🙂

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My little sister, Laura, has been majorly affected by this situation. She was looking forward to be the only one left at home while I was at school, but here I am. She graduated high school and is now in college. Pretty soon she will be ahead of me. Shes beautiful and gets more attention from boys than I ever did, even before I became the lost girl in the woods! But Laura harbors a lot more feelings and trials than she lets out. I’d do anything to take that back, but I don’t have many options. I’m sorry to put you through that, Laura. I wouldn’t wish any of this on anyone.

Mom and Dad have different love languages, and so do I, but I have to remember how much my family does for me, and I have to put aside any pet peeves that I can in order to truly show my appreciation and love. I’m not great with words right now, I don’t love physical touch, but I do well with actions and giving gifts or sending/writing out my feelings. That, however, is the opposite from others in my family. Dad loves physical touch/hugging, mom loves actions, Laura… probably actions that follow words. Don’t lie. Don’t make anything up. Don’t take credit for something you didn’t do and don’t deny something you did do. Make sense?

Life is short, right? So  embrace every day, and then really embrace the people you love. Can you make a sacrifice or step out of you comfort zone for a 15 second hug? Or a dollar store gift? It’s the thought and the effort that count, most of the time 😉 Family, by blood or by love and loyalty, are the ones you end up needing. It’s never too late to start appreciating people more and treating them as such.

Chronic illness can affect more than just the patient, when you have caretakers and live at home with family members, parents, or your spouse, they all suffer and worry and work so hard throughout the journey. So when you think about the patient and regularly check in or want to be of help, I can tell you that the caretakers (For me, my parents and my little sister) need just as much TLC as I do. It’s also so important for me, the patient, to take time to appreciate each of those people in my life, make sacrifices for them as they do for me, and treat them in the best way I can, even when I’m feeling terrible. This isn’t a battle anyone should fight alone.

 

Love and be loved, go out of your way to support and care for those in need, it’s the best thing you can do for yourself as well as for others.

 

Willfully Determined

Yesterday I pushed myself to do more and to do different. I decided to be a 22 year old for a few hours, I just ignored the fatigue, took the pain meds, and went to back to back movies (7-11:30pm) with my sister, who didn’t think I could stay out late anymore. It was a gift to both of us to be able to spend that time together, just enjoying doing something that was so out of the norm.

Usually I sleep through 60-80% of movies anywhere we watch them, our basement, my room, the movie theater, other peoples houses… But last night I worked hard to stay awake, and I did a stellar job. My POTS/dysautonomia leaves my body unable to pump blood to my brain when I sit down for too long, so I fall asleep or pass out even if I’m loving a movie or having a great conversation with someone; but usually, if I move around or take a walk I start to feel much more human again and stay awake for at least 10-20 minutes 😉

My family asked me if I really had energy for this, and here is what I told them,

“No, I don’t have the energy, but this isn’t about energy.  This is about desire and determination.”

Sometimes I have to accept my symptoms, accept my situation, and make a choice to push past all of the exhaustion, pain, nausea, and sensitivities so that I can remind myself and those around me that I’m still me, and that there are still things out there, outside of my “safe zone” (aka my house and my room). Watching the world go on without you can be a very strange feeling, it’s like watching from an outside view, looking down on the life I thought would be mine and watching others continue on without me. The world doesn’t wait for anyone.

Recently I’ve been hearing a lot of “nothings” from doctors; some literally don’t have anything to say, don’t answer emails or calls or anything, others telling me they can’t take on my case or I’ve exhausted the options they can offer. It’s a lot of “keep you comfortable” and “manage symptoms.”

After so much of the same, I’m so tired of doctors and meds and tests or treatments that no one actually thinks will work. I want to live. I want to experience my youth, I want to really feel alive and I want to cross items off of my bucket list.

I want to travel and see incredible sites and take countless photos. I hope to visit all of the girls who I’ve met online, the ones who have helped me through these years of illness, and I want to meet new people, and fall in love. I want to get rid of these tubes so I can swim with dolphins and scuba dive, get as close to my mermaid dream as possible.

I have a lot of goals, and I may never accomplish all of them, but they make for some happy thinking & I never pass that up. 🙂

 

Welcoming in a New Day

Another year gone, already?! I’ve read and heard so many people saying that time is flying by or posting long facebook posts about all that was accomplished or what they learned in 2017 and what their goals are for the new year. And yes, sure, I could do the same, but in all honestly, my illnesses have changed my perspective on the passage of time and watching one year pass and another begin just isn’t as huge of a celebration anymore.

My life has changed drastically over the last 5-6 years and I’ve grown and learned so much, but I’ve also lost many parts of myself and so many aspects of my life that used to create that excitement and significance of a year passing.

I’ve been out of school full time for three years now, and by leaving school I also left my friends, my social life, and my education behind. At the time, I had no idea I was leaving for an indefinite amount of time, and now I’m watching my friends graduate, some of them have even gotten engaged (s/o to my first year hall-mates who just got engaged to their high school sweethearts <3), and many of my high school classmates have even settled down and started families.

Before leaving school and having my illness progress into an extremely severe case, I had so many goals and plans for my life, but being dependent on feeding tubes and a hickman line (a long term IV in my chest) for nutrition and hydration and being dependent on my parents for everything from setting up feeds and sorting my daily meds to driving me to appointments and staying endless nights in the hospital has really changed things for me.

I no longer look at the long term or “big picture,” but instead focus on getting through each day. Some days I just focus on getting through each hour, trying to survive the time between each dose of nausea or pain medication. My every day life can get monotonous at times when I am home bound or bed bound, sleeping more than I’m awake, awake only to take medications, go to the bathroom, start new feeds, etc. The days blur together when you do the same things every day and have little to look forward to. Although many of my days are full of pain and discomfort, its always possible to find something to laugh at, smile over, or appreciate.

Instead of looking back on what has gone on in the last year or thinking of what I can accomplish in a new year, I continue to focus on each day and every small beauty and accomplishment that occur in that day. Although I don’t have any huge plans for my future, I do have dreams and goals, and I’ve gotten really good at appreciating the small things in life, if you take time to look, there’s something positive in every day.