The Power in Realizing “You Have a Say” When It Comes To The Treatment of Your Rare Disease

August 31, 2023

“Do you want me to put a lead apron over your lower abdomen while we do the scan?” The RAD tech smiled and compassionately stated.  “I just feel like you get SOO much radiation,  and if you ever want kids of your own someday…we gotta start protecting that area a little bit” 

I smiled and thanked her for her compassion, and told her I would. But on the inside my jaw hit the metaphorical floor. 

In my 27 years of life, 13 of them being spent in more medical settings than anyone should, I’ve spent time wondering if my body could carry children, or with the rare diseases I have if my body should carry children. 

But through the countless scans I’ve had,  and sometimes what feels like never-ending radiation exposure, I’ve never once considered that this simple repeated act , may be the thing that has the biggest impact on my future fertility. 

I mean through the pills and the tests and the procedures, we are all given those consent forms filled with words we barely understand. But do we ever take the time to read them? 

I know I definitely don’t read them as well as I should. 

When your health “throws you in the deep end”  and you have two choices, sink or swim, it’s only natural to choose to swim.

To take every pill, endure every test, have chemicals you can’t even pronounce injected into your bloodstream, heck even have parts of your body removed, it’s walking on a wire with no safety net. One side is full of never-ending painful landings,  and the other side, you fall until you land 6 feet under.

How do you balance it all?

Are there counterweights to prevent what seems to be an unpreventable fall? 

I have so much I need to learn in this “category “ of healthcare I seemingly will forever be a part of. But the most important thing I have learned about how to manage these “big choices “ when it comes to healthcare where taught to me by the primary care doctor who saved my life.

When we discovered by accident that a pretty hard-core medication, one that doctors hate to have patients take chronically even in life-or-death situations, was the only thing not just keeping me off of IV nutrition, but was improving all other aspects of my health doctors were stumped.

They had no idea what to do, and it seemed like the only doctor who would listen to me was the only doctor at the time who had ever truly listened to me. My primary care.

I told him over and over I wanted to stay on this medicine. He at first, like the others, said it was too dangerous. But only he got to see how sick I got when I came off of it.

So at my next appointment, where I came ready for “a showdown“ with the kindest man on earth, ready to demand and express how badly I needed this med, I was caught off guard.

To my surprise, he came prepared. He gave me printouts. He gave me websites. He gave me every source of information you can imagine and said, “I know you’re smart Megan,  and I know you’re not taking this lightly. I want you to read EVERYTHING about this medication. Of course, how it helps, and how it works in your body. But I really want you to read on how it harms your body. 

Because I agree, it’s helping you. But if we can’t figure this out, or if we have to have you on this long term, it’s going to destroy your body. 

But YOU are the one who lives with your disease. Not me. You know how you feel. You know what you live and and lived with. I want you to come back in one week to talk to me about what you have learned.  And tell me if you think this medication is truly worth it.”

I spent the days pouring over papers, websites and journals, reading all the info he gave me and beyond. I spent the nights bawling to my mom about the harsh realities of this medication, and letting tears pelt my pillowcase as over and over in my head, I relived and recapped everything I learned about this medication. 

The damage from this treatment could be… no, probably would be severe in the long run. But all the study confirmed something that deep inside of me already knew. Sure, this med would damage me “in the long run.”  But without it, I strongly felt like wouldn’t live to see  “the long run.”

I saw him a week later. 

He quizzed me on what I had learned, nodding at everything I told him. And when I asked him if we could start the treatment chronically, he gave me a grimaced, but understanding smile until I asked him a simple question. 

What can we add to this to help “lessen” the damage of the medication?” 

His eyes glinted as a smile crept across his lips like I had passed some secret test, and now he could fully see that I had really done my research, and he asked me to continue. 

So I responded. 

“This medication destroys vitamins in me, can’t we supplement some of them? I know it won’t stop the damage completely, and some of these things can’t be supplemented, but I think, with the right vitamins/treatments we could “lessen “ the damage for as long as we can. Right?” 

And at felt like right then and there we made a game plan on “How To Save Megan’s Life While Doing the Least Amount Of Damage In The Process.”

And believe me, I haven’t been able to avoid all the damage.

But through that choice we have found specialist that have led to diagnoses that have led to further treatments, treatments that have led to further improvement. And in October I’ll be eight years past the age I was told to “Enjoy the Life and Quality of Life I Have Left.” 

And that alone tells me we made the right choice.

Through that experience, My PCP taught me, and he continually taught me, that I have the biggest say when it comes to my health.

And with every doctor I see, with every treatment I take, with every option I have, especially living in a complex body some doctors won’t even try to understand, I need to personally make sure I am informed so I can make the best decision for my health. 

But I also have to have the courage to ask questions, make sure I’m comfortable with any and all treatment plans, and make my voice heard. 

Because the doctors don’t have to go home with my diseases. 

I do. 

The doctors have their expertise, and they give their suggestions. But even when I feel powerless, balancing on this tightrope where destruction seems to be the end result, 

I have a say. I’m the one who gets to decide if the treatment is working or not. I’m the one who can ask for “the least evasive treatment.” 

And in the opposite. I can fight for the evasive option, even if it’s the scariest one, because I not only want to live but have a quality of life. I can say no to the scans. Say no to the tests. And even say no to the procedures. I’m the one who decides if the side effects of treatment are worth it or not. I can ask about further scans, tests, and procedures when I want to. 

If and when I “fall”, I have the right to do it on my own terms and know I have a team behind me to get me back “in the balance.”

While facing rare life-threatening diseases, I don’t know if there is any right answer. Maybe just the right answer for “right now.” But I do know some of those tough answers, with the toughest of consequences, are the reason I’m here today.

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