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. 🙂

 

 

 

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.

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.

IMG_4811

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.

_____________________________________________________

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.

 

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

Hello lovely friends. I hope this weekend is treating you well!

So I did not move blogs. I switched gears a little bit but you can still find my blog here.

I’m totally good with it. I love this community. 🙂

Today I want to talk a little bit about freedom with chronic illness, and lack thereof.

Chronic illness has stripped A LOT away from me, and unfortunately, I am in good company. Upon getting diagnosed with a chronic illness and even before the diagnosis, there is a feeling of sadness, defeat, and anxiety. In some cases, one becomes confined to the four walls of one’s living room or bedroom, occasionally making it outside on a nice day to sit in the sun (if illness permitting). Then there are individuals who are confined to their beds and unable to move from the mattress supporting them. To some people, this may sound nice.

You get to lie in bed all day, what’s so bad about that?

I was never fully bed bound, but in the early stages I spent a significant amount of time in my bed and on the couch. I can tell you firsthand that it is not a party, because it is no way to live. Why would anyone want to spend their time laying in bed when there is so much of the world to see and experience? It’s not freedom. It’s not joy. It’s confinement. Bed does not become a place of comfort and relaxation. It almost starts to feel like a prison.

So what do you do when you cannot exercise? When you cannot walk too far? When you cannot stand for more than a five minutes at a time? Because let me tell you, staring at those same four walls can make anyone go stir crazy – even when you are sick and do not feel well.

You adapt.

For some people that means getting a wheelchair, walker, or scooter. My walker was a blessing in disguise. It let me do so much more than what I thought I was able. I grew a little stronger as the years went by (thanks to different treatments, medications, physical therapy, and of course proper diagnoses). I am still not 100%. Heck, some days I function and run on a battery of a measly 10% charged. I manage. But there is still so much I cannot do.

Then, I met Pip.

IMG_2578[1425]

Yes – Pip is a bike. But not just an ordinary bike. Pip is an electric bike with 4 levels of pedal assist ranging from mild to strong.

So I know what you are thinking.

Why did you name your bike?

Here’s the simple answer: just like people name their boats, cars sometimes, and other inanimate objects that are important to them, this bike is no different. She’s special. She needs a name, and naming her just felt right.

I’m not crazy if that’s what your thinking.

I’m joyful. I’m thankful. I’m free.

This concludes part I of II of this blog post. Stay tuned for the detailed story behind Pip, why I gave this bike a name, and the freedom I felt yesterday on my first real adventure.

 

Let’s Talk About Bed (Spoonie Editition)

Let’s talk about bed – chronic illness style.

My bed and I have a love hate relationship, with mostly love and a little hate.

On Instagram, I was scrolling through my feed to see that the majority of my pictures are taken from my bed. My heart sank a little and I started to feel bad, guilty, embarrassed. I can’t pinpoint one emotion, but I think I felt like I should have a greater variety of photos. And don’t even get me started on those should statements. But I see so many people with beautiful pictures from hiking, biking, and even bright colored foods that look so good and delicious! Why is it that I can’t seem to get a picture to look that good??

But I digress.

My bed is where I spend the majority of my time on my days off and when I come home after school, appointments, internship, etc. And there is no right or wrong on social media. My account is my experience in this crazy world. It is what it is. My bed is a huge part of my life and where I do everything. From school work, to sleeping, to watching television, to blogging, to reading, to resting, to just laying. As someone who struggles with multiple chronic illnesses, I have come to find that a good bed is a must – an essential to living. Why? Simply because it is where I spend a lot of time when I am home. Sometimes I will lay in bed for hours half asleep, or feel like I am being weighted down and it takes all of the effort I have to get up. I love my bed, because it allows me to rest. It gives me comfort when I am not so comfortable. But there is also a small portion of me that hates it. I hate my bed at times because I almost feel like it is a confinement. Of course I don’t have to be in bed, but sometimes it feels like once I am in bed I cannot leave. Sometimes, the fatigue and exhaustion is so bad that it’s the only place I can and want to be. In this sense, it can be like a prison, because I want to be out in the world. I do not want to be sleeping for hours during the day, or feel stuck in bed all afternoon. I want to be able to get into bed at night sleepy, and wake up refreshed and ready to take on the entire day.

But that isn’t my reality – and that is okay. I am learning to embrace this life. I appreciate the little things, like riding my bike up and down my long driveway, sitting outside in the sun, reading a good book, and playing with my dog. I capture those moments, too. It may feel like those instances are blips in time compared to the amount of time I spend in bed, but it makes those moments that much more special and enjoyable.

And I am going to rock those photos from bed – because I have nothing to apologize for. My only hope with my IG account, and this little blog, is that it can bring hope and comfort to others. I share my story not so much to make it known where I have been and what I currently go through, but to let others know that they aren’t alone, and to connect with others who get it.

“Comparison is the thief of joy.”

I like to remember this quote, especially when it comes to social media. What we put out there is our own experience, and you cannot compare apples to oranges. How many likes you have, where you take your pictures, what your pictures look like – that does not really matter. In fact, it does not matter at all.

The point of this post? I don’t really know if there is one.

And yes, I am writing this from bed. 🙂

74C6B07A-C76F-4600-A54D-A8F9FABDD113