Now For Something A Little Different – “The Unknown Monster in Marlee”

I’ve sat down at my computer 3 days in row to finish my blog post about the dragon egg ornaments and I just can’t seem to focus long enough to publish. I have people I need to thank in an upcoming post, and I’m sorry for the delay. I’ll get to it, I promise!

When I started this blog I wasn’t really sure what I was going to post, but I figured I’d start with “Pie Quest” and go from there. I see a lot of people have “themed” blogs just for a certain topic, or multiple blogs for different topics. You’ve probably already noticed I have lots of different interests, and I think I just need to share them all in one place.

That said, I’m about to talk about something a little different than my usual. I like to keep things upbeat, but let’s face it things happen – it’s our job to find the silver lining in the clouds and the rainbow in the rain.

An old friend of mine recently posted on Facebook about a situation his family is going through. His little cousin, Marlee, is only a toddler and battling an unknown brain disease. I followed the link he posted to find the family’s donation page.

The Unknown Monster in Marlee Donation Page

The story is explained on the page and will tug at your heart strings. If you can’t make a donation for whatever reason, perhaps you could share so it will come across someone that can.

The insurance provider the family is dealing with isn’t getting results in finding a diagnosis. The family looked elsewhere for treatment, and ultimately got sent back to their original provider. This is particularly heart-breaking for me because the same insurance provider did the exact same thing to me. I mentioned before that I dealt with a brain disease from 2003 to 2010. Over 3 months of almost weekly E.R. visits they kept trying to tell me it was a migraine. Finally, a new doctor decided to do a lumbar puncture for fear of a brain aneurysm and I finally got a diagnosis. Don’t worry, I didn’t have an aneurysm – I’ll fill you in on that later. The point is, they kept poo-pooing me away for 3 months while I was spending a lot of time and money on their E.R. services. I struggled with it as an 18 year-old – I can’t imagine being a toddler and having to deal with people just shrugging and saying “I don’t know”. To make matters worse, the longer they shrugged me off the easier it was for them to start thinking I was making it up for attention. I have horror stories about doctors. I remember my dad didn’t know how to take things. I don’t think he wanted to believe anything was wrong – he even told me at one point to stop “faking it” and felt horrible after I finally got a diagnosis. It was hard for my mom to watch me go through these horrible symptoms that no one could explain. The same insurance provider did it to me again in 2011, and well… there’s another situation I’ll have to fill you in on eventually that’s still unresolved – April 15th will be the 2 year anniversary of my weird “undiagnosed” problem. Since I have good days, and I can still function through the pain without anyone needing to know I’ve opted to just stop searching for a diagnosis. It’s hard to deal with being poked, prodded, and scanned a bazillion ways. I can still accessorize with a smile. I can still dance most days. I can still do art, write, and work in my garden. I can still make an income for myself, and I finally decided it was just making me emotionally sick to put up with their “I don’t know” shrugs.

Marlee doesn’t have my luxury of being able to function through her illness, and I wanted to raise awareness about her situation. My sincere wishes to Marlee and her family for some peace in the VERY near future! I hope they have many silver linings and rainbows until this storm passes for them!

I know what it feels like to deal with this insurance provider and having hope dangled in front of you only to be turned away by the medical system. I sincerely hope this family gets a miraculous resolution, and any blessings of support we can offer in the meantime. I’m not going to try and retell their story. You can read updates on their blog:

The Unknown Monster in Marlee Blog

and if you missed it earlier

The Unknown Monster in Marlee Donation Page

I apologize for my short absence. I’ll get back in the swing of things soon!

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9 thoughts on “Now For Something A Little Different – “The Unknown Monster in Marlee”

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