The Truth About Chronic Illness

Field placement issues, vacation, Christmas…

It has been one thing after another in the month of December, and I feel as though I have barely had time breathe. There is so much I could talk about in this post. Everything I want to touch on will have to be split up into about 3 or 4 posts. Right now, I want to talk about the single aspect that threads all of these events together: chronic illness.

Chronic illness causes more issues in my life. It is the single cause for my field placement being taken out from under me, for making the trip across country 10 times more difficult than I anticipated, and for causing an extreme amount of tiredness on Christmas leading me to sleep away about 2 or 3 hours in the afternoon.

Right before Christmas, I took a trip with my boyfriend out west to see where he grew up and to visit with family. I did not anticipate the struggles I faced while I was there. Of course, I knew that some things may be challenging, but I was in for a rude awakening; the busy 4 day trip was a big wake up call that my illnesses affect me more than I even realize. At home, I am so used to my own routine. Because my field placement has not started yet, I spend most of my days doing school work, working from home, and going to appointments here and there. I have not had to physically push or exert myself for the past 6 months after my last field placement ended. This trip, though a lot of fun, was very difficult and tested my body more than once. I have not flown on a plane in at least a couple of years. Flying is exhausting, I learned. Thank goodness for wheelchairs, otherwise I would not be able to make it through the airport. A different climate takes it’s toll on one’s body as well. My first full day on the trip, I started feeling very weak, shaky, and dizzy/lightheaded. In fact, I met a close friend of mine and for the first 10 minutes of our time together, I seriously was wondering if I was going to end up on the floor of the Starbucks – I felt that bad. Almost any time I rode in the car, I lied in the back seat with a pillow and blanket. Any free moment I had, I crashed in bed. There were a few moments where I felt a meltdown coming. Conversations started out good, but 30 minutes into it I would begin to zone out. I realized on this trip that maybe I am not as okay as I originally thought. My head always fills with doubts about my illnesses (thank you, OCD). Due to the nature of OCD, no matter how bad I feel, the thoughts will always come. Sure enough, the doubts crept up as soon as I returned home (despite the overwhelming exhaustion). However, maybe I needed this trip to show me that I am not invincible, that I do have to take it slow, that my illnesses are very much real and wreak havoc on my life even when it is not obvious. Being thrown into a different environment and an alternate climate really took a toll on my physical health. Ever since getting home, I have slept away almost every afternoon. I had a bad pre-syncope episode on Christmas Eve. Despite it all though, I would not take that trip back for anything. I am realizing more than ever that with my conditions, it is a give and take. It is one step forward and two steps back. I can do the things I want to do with modifications. I may pay for the activities I do or trips I take. But what fun would life be if I didn’t do those things? If I didn’t risk my medical conditions flaring for a good time every so often?

So that is where I am at right now. I went to bed at 8:30 last night due to complete exhaustion. But I have tools to help me. I have family and friend support. I had a wonderful Christmas and I am so blessed to have others looking out for my health.

If you are struggling this holiday season, no matter what it is, know that you are not alone. We can make it through. “I get by with a little help from my friends.”

 

Glycogen Storage Disease Awareness Week

Hello beautiful people!

I want to start out by saying that I am not one to really get into awareness days, weeks, or months. Not because I think diseases or illnesses do not need awareness, but because really – it’s not my thing. Despite having this blog and my IG account to connect with others sharing similar struggles, I am actually a pretty private person, and I am careful about who I share my struggles with and who I let in to see the whole picture. This being said, for those who lay it all on the line, more power to you! I think it’s brave and awesome and I wish I could do the same, but this is me. I also do not find a need to talk about the specifics of my diagnoses and exactly what I have been diagnosed with, because I am really trying to adopt the notion that I am not just a diagnosis – and neither are you. I do not want to get caught up in listing all the things wrong with me, and feeling like I need to connect with others on the sole purpose of sharing a diagnosis. We are all in this together. All chronic illness sufferers across all walks of life and various diagnoses, we can come together to share our experiences, offer suggestions, bounce ideas around, and support one another.

This all being said,

I am going to go out of my comfort zone on this one and write a little bit about my experience with the disease that greatly affects me on a daily basis: Glycogen Storage Disease.

Why?

Because it is Glycogen Storage Disease Awareness week, a group of diseases that are not very well known. I have been diagnosed with two types, and for one of my types in particular, there is very little information and research out there on it. There are about nine cases total in the literature on one of my types, YET, about nine individuals diagnosed by my doctor in my local area. Crazy, huh?

Anyway – I will make one awareness post for this and one only. Not only am I writing this blurb because it is rare and it really impacts my life, but I hope that it can help spread the word, and get people thinking. Maybe, just maybe, it can result in a diagnosis that someone has been searching for years on end. You never know.

I am not going to go into the two types I have and their specifics, but I am going to talk a little bit about my experience and my doctor.

Let me start out by saying that getting my diagnoses for this was not easy. Let me also tell you that it did not get easier after the fact. I faced plenty of people who did not believe me, despite results, including other doctors and patients. Some say it’s just too rare to have two types of GSD. Some say you cannot get diagnosed through a muscle biopsy, only genetics. Some say for certain types you need a muscle biopsy AND genetic testing, and if both are not positive, you cannot possibly have it. I have heard it all. And from people who are supposed to be supportive like other patients! Here’s the thing: metabolic muscle diseases are rare, but they are not as rare as we think. My doctor would say to all of these naysayers: medicine is constantly evolving, and there is still a lot we do not know.

I trust my rheumatologist/immunologist who diagnosed me. Why would I trust the doctors who have not invested their time and energy into getting me well? Why would I trust the doctors who do not go the extra mile, and consider the “rare” or “impossible” when my symptoms line up? Why would I trust the doctors who, to put it simply, do not believe me? I have OCD. I already think I am crazy and one of my obsessions is that I think I am making this whole thing up 99.9% of the time. I don’t need doctors feeding that. But that’s a little besides the point…

The POINT here is this: there is a lot we do not know in medicine just yet, and a lot that we are still learning. I do know my symptoms, I do know the results from my tests, and I do have doctors that can put two and two together, despite there being some gaps and little holes of uncertainty if you will. This is because the disease is rare. The rarer it is, usually the less is really known or understood. Thirty years down the road, I do have to wonder if things will be different regarding metabolic muscle diseases, and I predict they will be.

I believe that there are many more out there suffering from GSD maybe without knowing, and who are searching for the right diagnosis.

So, in many ways I am lucky.

My advice to anyone in the frustrating process of being undiagnosed…DO NOT GIVE UP. Your symptoms are real. Your experience is valid. And you are deserving of appropriate care from doctors who will fight for you. They are out there.

GSD Awareness .jpeg

** Follow me on IG, and if you would like to know more about GSD or have questions on the specifics of the disease, DM me! I don’t know about all of the types, just mine, but I am wanting and willing to help others along the way. 🙂

 

 

 

Blackbird, Fly

It was a rainy afternoon with not much going on. I was inside my family home playing with my dog. She loves her toys, and can be a ball of energy when she wants to be. My mom was cleaning, and had Alexa playing her favorite songs. “Blackbird” by The Beatles started to play, and my mom began to sing along. “I love this song!” she said, as her face lit up. Rarely does my mom listen to music, and it was nice to see her enjoying her old favorites. I have heard this song quite a few times, but never really listened to the lyrics up until that point. “Are you my little blackbird?” my mom asked. I smiled. It was a meaningful, almost heavy smile, because as I listened to the song, a surge of emotions ran through me. I felt as if this song was speaking to me, and I could not believe I never bothered to really listen sooner. I fell in love with the melody, with the lyrics.

You see, throughout the last seven or eight years, I have been to hell and back. I lost myself. I felt trapped in this living nightmare and I did not know how to break free. Anorexia had a strong hold on me. Quite honestly, I never thought I would ever get better. I thought Anorexia was my life sentence. Then, something happened. A switch went off, or maybe it was years of hard work I did not even realize, because it WAS difficult. So difficult. The greatest struggle I have ever had to endure. BUT – I broke out of that spiral of self-destruction. I still struggle with anxiety, quite a bit sometimes, and my body image could definitely use some work, but I am getting there. I am growing. I am improving. I am learning to love me. It is a slow process that sometimes seems non existent from how it just inches along at times.

“Take these sunken eyes and learn to see.”

At my worst, I was skeletal. Bones protruding, dark circles under my eyes, and a pale, lifeless face. An additional 30 lbs, 2 inpatient stays, and one hospital trip later, I am here to tell my story. My eyes have life again, and I can see much more clearly than when I was bound by my eating disorder. I was blind to the truth, to what really matters in life.

“Take these broken wings and learn to fly.”

I was broken. Completely and utterly shattered – left to pick up these pieces that were scattered every which way. There were so many moments I did not believe or know how I would make it through. But I’ve taken this struggle, this immense obstacle I was faced with, and have tried to find the good from it. My broken wings are being mended and repaired a little more each day. I know there is a long road ahead. I am just in the beginning stages of overcoming my anxiety and OCD, but the eating disorder, the life-sucking parasite that plagued me for seven years, no longer has a hold on me. I am proud of myself, but even more so: thankful, oh so thankful. I could not have done this without God. I am forever grateful.

Despite my current limitations with anxiety and physical illness, I am learning to fly.

Much love,

That little Blackbird ❤

Ch-Ch-Changes

Hi everyone! It has been a while.

I re-vamped my site, AGAIN…I can be the most indecisive person you will ever meet. But I am pleased to say that I am finally happy with it. I want to get into the habit of blogging more. I really do love it because it is such a good outlet for me, and I like to think that it may just help others, too. However, my own mental blocks always get in the way. Either I have a lack of creative juices flowing, or I think, “why would anyone even care what I have to say…?” That, I know, is my total lack of self-confidence and anxious personality rearing it’s ugly head. It tends to do that, but I am a work in progress.

Now, I know a while ago I wrote about social media and how I deleted my IG. I want to bring this up, because I actually re-created a new IG account. After a couple month break, I decided to bring that platform back into my life. The break was so nice, a breath of fresh air! The interesting thing though, is that I went from taking pictures like crazy, to taking none at all. I think this break from social media was much needed, but I want to try to bring balance back into my life. I firmly believe that it IS possible to have social media accounts without going overboard, without it controlling and taking over your life, without it being this negative force that it turned into for me. I know my personality. I understand the disorders that I have. I am aware of my flaws. Instead of completely erasing IG from my life, I realized that instead, I can do things differently. I can find a healthy balance. It does not have to be all or nothing. Finding balance is something I need to work on in every aspect of my life, and I think I am strong enough and able to achieve this healthy balance when it comes to social media. Speaking of balance, my previous blog was @bearfindingbalance. In case you have not noticed, I changed my domain name and main name of my website. Though balance will always be one of my major themes and something that I strive for in my life, I thought @blackbirdflyyy was more appropriate at this time. There is a little story and a lot of meaning behind why I chose that name, but that is for another post – I want this to just be an update on all the changes I am doing!

Anyway, I hope you will follow along in my journey. There will be more posts to come so stay tuned. There is a lot going on in my life right now, especially health wise and school wise. If you want to learn a little more about that, please visit my IG account. I am starting my Instagram account from the ground up, and I will not stress about how many followers I have. I show me: the good, bad, and sometimes even ugly. But despite my faults, I know I have a lot to offer. I have a lot to learn from others as well. My focus for my IG account, AND this blog, is to create a positive space to give and receive support, make connections, and document the major happenings of my life, capture the good (and sometimes the difficult) through pictures and writing, and hopefully I can help others along the way. I will not get so wrapped up in these accounts where I feel the need to scroll, the need to take the perfect pictures to the point where it takes me out of the moment, because I want to be in each and every moment. I want to feel all the feels, and enjoy every second of this crazy ride.

Much love,

Blackbird ❤

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.

Cutting Ties

It has been a long time since I have blogged. In fact, for a while I was second guessing this little blog of mine, thinking I might just throw in the towel…

But, that is not in my nature. So here I am at 7:45 am, staring at this screen allowing my creativity to come naturally. There is something so peaceful about waking up when the world is still asleep. Yesterday I slept in until noon, and while that was needed, I think I much prefer to wake early and enjoy the cool morning air and quietness. I am loving just laying in bed looking out the window at nature and it’s stillness.

Which brings me to today’s topic – cutting ties.

Not with a person, but rather with a…something.

It has been about a week since I disabled my Instagram account. Now you may be thinking…

WHAT? WHY would you do that? How can you live like that? How will you survive? Which, I think is a common response.

OR, you may be thinking…

So what? It is just an IG account – and if that is the case, I applaud you.

You see, Instagram has always been a struggle for me. It’s like a game of tug-o-war. It is a double edge sword. Yes, it has blessed me with the opportunity to follow and meet some amazing individuals who share similar struggles, but it has also lead me into this spiral of self-absorbed negativity. As much as I hate to admit that – I’m putting it all out on the table.

Instead of enjoying the moment, I would think about what would be the best picture. My mind would be focused on how I look (which I have enough problems with anyway, thanks to mental illness), how my pictures can look their best, what arrange of pictures I would include on my account to tie the whole thing together, and so on.

Is that really anyway to live??

Sure – it was also good promotion for this little blog. But then that begs the question: What am I blogging for? Who am I blogging for?

Am I blogging to make my blog well-known and gain some notoriety? Am I blogging for others? Or am I blogging for myself?

I like to think that I am blogging for others AND for myself. You know what? Who cares if my blog isn’t well known. That isn’t what matters to me. I write for the sake of writing. I write because I love it. Writing is a way to express oneself – I think one of the best creative outlets there is. While I blog to (hopefully) help and connect with others and provide them with some hope, I am also writing for me. There is something so freeing about sitting down and writing a story, or writing whatever is on my mind, documenting my journey as I grow and change.

So I am thankful for that anxiety/OCD attack that lead me to disabling my Instagram. It started out as a compulsion, and lead to something beautiful. This past week I have actually had time to do other things. Rather than scrolling through Instagram at night, I have started some new Netflix series, journaled in my new little sloth journal from Barnes and Noble, and colored. I spent time enjoying my own company. I could get more school work done. Who knows, maybe in the near future I will completely delete my IG account. And you know what? I think I would be okay with it.

But what I don’t think I would be okay with, is getting rid of this blog. Every blogger will go through a rut from time to time when writing will be challenging. When nothing seems to come to mind. When one feels a creative block. It is about working through that and knowing that something, in time, will come. It does not always have to be so planned or forced. Then again, that goes back to the purpose of one’s blog – and everyone is different. I am not suggesting that there is a good or bad way to blog. However, the only slippery slope is when we get so wrapped up in technology and the digital world, that we stop living in the real world.

This is dangerous, and it is SO EASY to do.

So I will continue to blog. I will continue to write. I don’t know how many people this blog reaches, but if it touches just one person, I am happy.

And – you will not be able to find me on IG. You can find me on Facebook, but I rarely go on or post. Same with twitter. I like it that way. I think I am going to keep it that way.

This blog is really my only means of connection outside my actual life. It is my outlet which hopefully helps or inspires some of you. Because it comes down to this: I write to grow and create.

Who wants to join me on this journey?

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!