Trial And Error

Trial and Error. Two words that seem to sum up my experience in the last month pretty darn well.

I could go into a long spiel as to why it has (yet again) been so long since I have written on this blog, but I will spare you the extra details. This being said, trial and error is a large part of why this blog has taken the back seat. That, and just a lack of creative juices flowing through this overstimulated brain of mine.

Trial and error, I have learned, is an inevitable and sometimes crucial part of living with chronic physical and mental illness. Having a chronic illness is kind of like living in a shoe store. You are constantly trying different sizes to get the right fit. In order to find the best doctors with the best treatments, we must shop around. We must go to different appointments, see various doctors, get a host of tests or assessments done, and try divergent treatments. Usually, after some time is spent in this shopping spree phase, we can settle with the right doctor who orders the right tests and prescribes the right treatments.

Looking at my own personal story, it has been almost four years since I became sick. Just when I thought I was at the end of my road, something else always popped up. I have been to more doctors than I can count and taken way more medications than I can remember…and I’m still going on this journey! Hopefully it is winding down as there does not seem to be many more tests that I can forego, but now I am digressing.

Okay, I’m back – trial and error.

We need this process of trial and error. It is the only way that we will actually learn what we want and have the means to GET somewhere. Take doctors for instance. I have skipped, hopped, and jumped from doctor to doctor in search of a good fit, one who will take me seriously, and one who will not be afraid of a challenge. I finally found a wonderful primary who cares and who will fight for me. I was able to see a doctor who is very difficult to schedule appointments with, who ended up diagnosing me with something that no other doctor could.

Just last week, I went in for an MRI. The doctor who set up my MRI was a new doctor that I hadn’t been to before. I went there to get a second opinion and rule some other illnesses/problems out. I was not fond of the doctor who I saw; he basically told me that my illnesses were too rare and I probably wasn’t suffering from any of it. Instead, I was probably just deconditioned. No doubt I am deconditioned, but who will I stick with…the doctor who doesn’t believe me, or my doctor who does and will fight to figure out these last pieces of the puzzle? Who will help me along and get me the best treatment? Because let me tell you, there is more to the picture than deconditioning.

So I’m sorry, but in my eyes, it’s a no brainer.

I have experience with failed treatments. For example, I went in for my first iron infusion for low ferritin levels to gain more energy (at least that was the hope). What happened? I had a reaction. I felt worse leaving than I did going. I repeatedly cursed in my head (okay, and out loud) on that drive home, while praying I would make it home okay – which are two pretty contradicting actions. You would be surprised at how you react when your feeling that poorly. I ended up going to the Emergency Room two days in a row. Not fun.

BUT – now I know, thanks to trial and error.

Home sleep study? My breathing was normal. We did what the insurance company wanted, now we need to push for an in lab sleep study to actually be able to look at my brain waves.

Not only is this whole process trial and error, but it is almost like a game. I could go on and on with examples of trial and error with both my physical and mental health, but I won’t put you through that. I think you get my point. But if it did somehow get lost in all the ramblings, my overarching idea here is that trial and error is a part of life, and especially so in life with chronic illness. It can be a royal pain to deal with sometimes, but it is most likely the only way to get to where we want to end up.

So we keep going.

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Learning to be My Own Advocate with Chronic Illness

Today was a day, friends. A very long and tiring day. Some people think that dealing with chronic illness is not that hard. “It can’t be.” After all, “you just lay around all day right?” “Read, maybe watch some television. I wish I could do that all day” they say.

Little do they know that living with chronic illness is a battle. Each day is a fight, from fighting our own bodies to fighting with doctors. Then there is my personal favorite, fighting with insurance companies. THAT takes the cake.

Today I learned a very tough but important lesson and put this skill to practice for the first real time. I advocated for myself and my needs, and took my illnesses and my recovery into my own hands. Now, don’t get me wrong. I do things on my own. I call to refill my prescriptions when they are out, and then drive to pick them up. I schedule my own doctors appointments and make it to those on time. But the hard stuff has always been left up to my mom. Not because I am lazy, but because I am sick. It used to be that I could not do a whole lot thanks to my illnesses. I was pretty much house-bound, spending most of my time lying on the couch and in bed. I was not in a place to fight for my health. Now, I am a little bit stronger (okay, from where I was, a lot a bit stronger), and two years older, in my mid twenties, and it is now time to take ALL matters into my own hands.

I have been trying to get this genetic test done for 6 months now. I have gone through one appeal process and need to go through another. My doctor strongly believes this test will help us put some of these last puzzle pieces together, and I desperately want finalized answers. I need this test. Anywho, this test is…pricy. HIGHLY pricy, and with being a student, I just don’t have the means. Today I was on the phone for an hour with insurance and the people that have my blood just sitting there and waiting to undergo testing. I voiced my concerns to these individuals. I asked if there was anything else that could be done for me since insurance might not cover this test. I explained I am a college student who has plenty of student loans and yet I really need this test done. They expressed sympathy and were very kind. They did what they could. And despite the frustration I was experiencing, the horrible brain fog that was just completely clouding my thinking after a while, and the persistent fatigue, I accomplished a couple of things. Not only did I handle this situation all on my own, going back and forth with the various companies trying to sort through this issue and get yet another appeal going, but I advocated for myself and for my health. I took matters into my own hands. It was so hard. After a while I felt my brain turn to mush. But, I still did it.

This is an important lesson for any chronic illness fighter to learn – advocating for oneself. We have to be our own best and first advocate. Sure, we may need to rely on family members and friends every once in a while, especially when we are too ill to deal with it on our own. But we need that practice and we need to build up that skill of fighting for ourselves, for our health, and for our quality of life. This can be super difficult, especially when we don’t feel well. This is also the reality of living with chronic illness. Dealing with illness and all of the obstacles that come with it is a full time job in itself. Don’t let anyone tell you it’s not.

How do YOU advocate for yourself and your health? Let’s get the discussion going!

How My Bike Gave Me Freedom [Part II of II]

I hopped on my seat and looked down the winding path ahead. I slowly found my balance and started pedaling. The pedal assist was on setting two, and it gave me a boost forward right away. I laughed out loud and a big smile appeared across my face.

“This is so fuuuunnnn!” I cried, glancing up and squinting in the bright sky.

“Are you okay? How does it feel?” my boyfriend yelled back turning his head slightly.

“It feels great!” I yell to him. “Wait stop – this is so beautiful! Can we get a picture??”

“Absolutely!” he said with such enthusiasm and pure excitement.

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My first picture of the day. I am wearing my “Mighty” shirt because it just felt right. Underneath the bridge was a fast running creek cutting through rocks. I peered down and felt very subtle splashes of water hit my face. We continued riding through the winding path, up a tiny hill and down again. As I rode, I realized my bike didn’t have a name. This little white beauty of a bike, one that is giving me the freedom to go out and explore nature, enjoy time being active with people who are close to me, and re-instilling some adventure back into my life, surely deserves a name. Penny or Pip?

Pip. Definitely.

I rode through the hills and around a medium sized glassy lake. We stopped and took pictures, soaking up the nature and the God given beautiful day. We explored hidden places. We sat on a log resting on the beach – the only ones there – just enjoying the silence and each other’s company.

We finally made it around the entire lake and found our way back to the car. I plopped down on a rock heavily, but my heart was filled with gratitude and my soul was dancing.

4.5 miles we rode. I cannot believe it. Yes I had pedal assist, but still. With chronic illness, I can barely stand for 5 minutes sometimes.

Pip is more than just a bike. She is my gateway to freedom. My way of feeling alive and a means to exploration and adventure, which for a while now has been lacking in my life.

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We all need to feel liberated. We all need adventure. We all need to feel like we belong and that we are a part of this wonderful world.

Chronic illness friends, I encourage you to think of things that give you a sense of freedom. What awakens your spirit? Whether it is sitting outside in nature, drawing/painting, reading, using your walker to be outside, or having someone push you in your wheelchair as you feel the breeze hit your face and blow back your hair – you need that. You deserve that. You are worthy of that.

We all are. Chronic illness or not.

 

Natural Hair and Bare Faces

Let’s talk about the fact that society says that women need to either a) enhance their features, or b) change how they look.

Let’s talk about the number of eating disorders present in the United States alone.

Let’s talk about how corrupt our society can actually be.

And let’s talk about what we can do to go against the grain. How can we be authentically ourselves? How do we get to a place where we do not feel this overwhelming pressure to conform to societal standards that, let’s face it, resemble that of perfection?

Let’s talk about natural hair and bare faces.

I’m no body-positive guru that is here to preach about how we all need to love how we look. How we need to feel confident in our skin and in our bodies all of the time, because we are each beautiful in our own unique ways, blah, blah, blah.

I don’t want to say that is a load of crap, but…

As someone who has struggled with a relentless eating disorder for seven years, I know it’s not that simple. Being in recovery for a solid two years, I still struggle, immensely I might add, with body image. I think the key though, is to start off small.

As a child, I always hated my hair. I thought that the only beautiful hair was straight hair, and I did not have that. I was cursed with this awful curly, frizzy mess. I spent countless hours straightening my hair, trying to get it poker straight, flat, and smooth. It has taken me a long time to be able to embrace my natural hair, and now, I truly do! And NOT just because I am lazy! In all seriousness though, I have grown to love my hair, and I have learned and am still learning that beauty takes many forms.

Makeup. Let’s talk about that. There seems to be this unwritten rule that states that women cannot look presentable unless they have on makeup.

Not. True.

Just like any other girl, I do enjoy getting dolled up from time to time, doing my makeup and feeling “put together” if you will. HOWEVER, I feel even better when I come home, and can take it all off – ridding my face of the cakey BB cream, face powder and blush. Taking off my mascara. Letting my pores breathe again. It’s honestly such a good feeling. And why can’t we take this feeling with us when we leave the house? I am getting more and more comfortable going out with my natural hair and makeup-free. I am learning to accept the parts of myself that I once hated. I am starting off small. Embracing my natural hair and skin is no easy feat. But the more comfortable with myself I become and the more I leave the house my natural self, the easier it gets. Loving my hair and skin can be hard, but loving my body can be even harder. I hope that this growing confidence in one area can transfer over to my body as a whole, and who knows, one day it just might. But we need to take small steps, and of course take it one step at a time. We can start by not feeding into these God-awful standards that society has set for women in particular. I know I said I wasn’t the body-positive guru, but I am going to get slightly corny here while telling you the truth at the same time: the body that you have, the features that God blessed you with, is beautiful. You don’t need the hair straighteners, the blow dryers, the makeup, the nail polish. Sure, that stuff is nice sometimes. When it becomes dangerous is when you think you cannot leave the house without it. When your self-worth and self-esteem rides solely on your appearance. Be cautious of this.

Let your hair down. Let your skin breathe.

Your okay.

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Untethered

I wake up. It’s 9 am and I see the sun shining through my window and feel the warmth touching my face. It feels so nice to wake up by my internal clock, and not by an obnoxiously loud beeping alarm. I feel refreshed. Not too sleepy to where I cannot keep awake. So I comfortably and easily swing my legs over the side of my bed and stretch. My body elongates and I feel nothing but gratitude; for my wrinkles, curves, fat, muscles, skin, freckles, scars. My imperfections do not bother me. In fact, I embrace each and every one of them. I acknowledge that the parts of me that were once was hated and abused are perfect in their own way. I wrap my arms around myself giving my body a gentle hug. Because all of these years I know that’s what it always wanted. Its what it always needed.

I make a cup of coffee and watch the creamy almond milk turn my coffee to a delicious warm brown. I pour just the right amount of sugar. I eat my breakfast and plop onto the chair at my kitchen table, opening up my laptop. I enjoy scrolling through and reading all my favorite blogs. I soak up the beautiful and wise words of others. As I read, I take bits and pieces from each post, retaining the information at my own pace and in my own time.

I get ready for the day – brush my teeth and wash my face, and leave my hair as is. It is messy and curly and tangly, but I like it that way. Its my natural hair and I do not mind it. Actually, I kind of like it. I take one glance at myself in the mirror, and part from it until the evening. I don’t need it today.

I ride my bike through country and down by the lake, taking the winding trails for hours. I feel the wind blow through my hair. I know it’s got to be changing the way my hair looked from the morning, maybe even messing it up. But I do not care. I am too busy enjoying the moment. I feel alive. I feel free. I tilt my head up and squint at the sun, feeling the rays penetrate through my pores.

When I finally arrive back home, I take out a juicy red apple and open a fresh jar of creamy almond butter. It makes for the best snack, and I feel satisfied knowing I filled my body with some good nutrients.

I read a new book. A memoir, a collection of poetry, or the newest fiction – anything that can take me into a different realm or world for a while. It makes me think about life; the struggles, the beauty, love and loss. I laugh and cry – I feel each emotion as I venture through the pages, appreciating every word.

It is now 9 pm. I had my dinner. I spent some time with family and with my boyfriend. We laughed until tears were rolling down our cheeks. My boyfriend is so funny – we always have such a fun time together. He knows how to make me laugh, and because of him I learned that life is meant to be enjoyed. I now know that I must live my life to the fullest and embrace it all. Feelings are a part of life, not something to be feared.

I climb into my bed and feel my head on the cool pillow. Snuggled in warm blankets, I lay there and talk to God. I thank Him for such a beautiful day. I thank Him for giving me a second chance. I thank Him for all he has blessed me with, despite the things I have done. Tears begin to fill my eyes because I am overwhelmed with emotion; I feel His love pouring over me, and I am still. Peacefully, I close my eyes and fall asleep.

You Are Still Loveable

Valentine’s Day…it has never been my favorite holiday. Sure I like it for the chocolate and the little gifts I get (and so appreciate) from my loving parents. And I have to admit, it has always been more fun when I have been in a relationship. But Valentine’s Day does not have to be celebrated only if you are in a relationship with someone. I do want to say that yes, I am currently in a serious relationship that has been so good for me. It is a lot of give and take. Well, quite often I feel like it is a lot of taking on my end, and not enough giving. The reason I feel this way is because I suffer from anxiety and other mental illnesses, as well as chronic illnesses. And I get it, everyone has something. No one is perfect. We all have flaws. We all have struggles. But sometimes, I feel like there is A LOT of baggage that comes with me. And my chronic illnesses, well, they are not always easy to deal with. But honestly, the thing that I feel extra guilty about, the thing that has always pushed other people away in the past, is my mental illness. My eating disorder, my severe anxiety, my depression. I mean, who wants to deal with that?

Well, I finally found someone who will go to any length to make me smile, who will try his hardest when I am in an anxiety attack to find words of comfort. And I wouldn’t trade that for anything. I am so blessed.

But back to my main point: I want you to know that if you suffer from anxiety disorders, depression, or any other mental illness, DO NOT LOSE HOPE when it comes to relationships. I am not the easiest person to be in a relationship with half the time (just to put it plain and simple). But maybe, we are better at it then we think. When you find the right person, that person will love and accept every part of you. And you, in turn, will feel more comfortable being yourself and going to that person when you need a hand, hug, or shoulder to cry on. And sure, your anxiety might be annoying or aggravating at times to that person, because he/she is only human too! But that person will accept you with your disorders or perceived flaws. They will look at the whole you instead of that one part of you. They will not be annoyed by you (maybe by your anxious or depressive thoughts once in a while, but not by you). They will love you unconditionally and do what they can to help you or make you feel better. For the longest time, I thought I was unlovable. I thought I would never be in a solid, healthy relationship, never get married, never find true happiness. Slowly but surely, God and the universe is proving me wrong. We are all deserving of love. We are all deserving of a happy, healthy life. And my advice to all of my friends who spent this Valentine’s Day without a significant other or felt lonely, is to have patience with yourself. Shower yourself with some love because before anything, you need to love yourself. This does not mean that you have to fully love yourself 100% of the time to be in a relationship. That certainly is not the case. Self-love is an ongoing process. Something that we need to work at every day. It may come easier to some than it does to others. For me, it has not been an easy journey. But I am on the journey none the less, and I am learning to love and accept myself more and more each day. You do not NEED a significant other to celebrate Valentine’s Day. All you need is you, and of course, family and friends matter and mean everything too! But if you felt lonely this Valentine’s Day, and if you suffer from anxiety, depression, or other mental illnesses in particular, I hope you show yourself extra kindness and give yourself grace. Know that everything happens in its perfect timing, and you are loveable, and you are beautiful, and you are special, and you are deserving of good things. And if you don’t have anyone who can tell you that or show you, you are at least hearing it from me. But please, hear it from yourself, too. Happy late Valentine’s Day, friends. And if you didn’t do something nice for yourself, go buy yourself some chocolate :).

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Living Our Best Lives with Illness

Chronic illness. Two words that represent anything but fun and joy. Rather, those two words are the epitome of pain and suffering.

Those with chronic illnesses know that following a diagnosis, and even before one receives a diagnosis, life can be utter hell. People’s once happy, fun-filled, and busy lives gets turned upside down. Sometimes in the blink of an eye, other times it is a slow, gradual process. Both of which are equally as painful and devastating.

But – we, as chronic illness warriors have two choices.

  1. We can wallow in our pain and feel sorry for ourselves.  Or
  2. We can make the most of our situation and find ways in which we can feel a little better and live our lives to the fullest – WITH illness.

Now, I don’t mean for this to sound harsh. Believe me, I am fully aware that there are varying degrees of chronic illness, and some of us are in excruciating pain every day or bedbound. I was once house bound and spent most of my days in bed. It is not fun. It is crushing. You feel as though you are a sack of potatoes not able to do anything or contribute to society. You wonder, what is the point of my life? 

But I am here to tell you that it may not always be that way. In fact, it probably won’t always be that way. Many chronic illnesses wax and wane in severity. Different treatments, medications, IV fluids, homeopathic options, will allow you to eventually find something that works. Even if it helps just a little, there will be some improvements made at some point in your life. Maybe one day you will be able to get out of bed, leave the house, do some form of exercise, engage in physical therapy, or meet friends at a coffee shop.

This past weekend, I took a road trip with my boyfriend. We went to the mountains to go skiing. Last year was the first time I tried skiing at my local ski club in three years. I was only able to do a couple runs, and I was exhausted, but I was so proud and ecstatic with that accomplishment. My trip this past week was a blast. I was at the ski resort for a total of 4 hours. We had to make lots of stops along the hill, and go in to take a break, but I still had the best time and was satisfied with all I was able to do. I pushed my body no doubt, and of course I payed for it later that day and a few days after the fact. But I did it. I had fun. I enjoyed myself. And for the first time in a long time, I felt normal. Even walking around the town with my walker the day after skiing, I felt alive. Sure I had to use a walker and was the only one wandering the town with an assistive device, but because of that device, I was able to do what everyone else was doing.

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What I really want to get at here, is that we can still have fun. We can still enjoy life. We can make the most of this life and practice gratitude for all that we do have. Sometimes, you don’t always have to be grateful it isn’t worse. We are allowed to have bad days. Believe me, I have my fair share of them with chronic and mental illness. But it does help to remind myself of all my blessings, and that somewhere out there, just miles within my little radius, some people have it worse. There is so much suffering in this world. Every one of us struggles. Every one of us suffers. Every one of us experiences some sort of pain. But we don’t have to let our pain define us. Chronic illness friends: do everything in your power to lead the life you deserve. Try different treatments, work your muscles if you can, do things that YOU ENJOY. Take up knitting or crocheting, draw, paint, get out of the house when your feeling up to it, meet a friend, watch your favorite television shows, take a bubble bath, write, connect with others via social media. Live your best life, because it is so possible. We may not be able to do all we once did, but we can live life to our fullest despite our conditions, and with illness.