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.”

 

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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.

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** 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. 🙂