I am an advocate. But what exactly does this mean? What does an advocate do?

i used to

As most of you know, I was diagnosed with Sjogren’s Syndrome in October 2017. Three weeks later, I was also diagnosed with Parkinson’s Disease. Both diseases had been somewhat well-maintained…until I contracted COVID in November 2020. I’ve not been okay since. It took until April of 2022…17 months…to get ANY of my three providers (PCP, Neuro, Rheum) to even start to listen to me. 

See this photo? This photo captures SO much. It was October 24, 2020. It was my niece’s wedding day. It was the first time in ages that I dressed up. It was the first time in nearly a year that I had my entire LouCrew together. And, it was the last time that I truly felt good.

I am in terrible, terrible pain everywhere, every day…but especially my legs. They are so incredibly weak and I will fall without warning. On my best days…if I can even get out of the house…I completely rely on a walker. 

I have random, unexplained fevers 3-4 days a week, I bruise incredibly easily, and I experience a fatigue so deep I don’t even know how to describe it. I’m rarely able to cook dinner for my family anymore. There are functional changes that are beyond frustrating and there are cognitive changes, subtle to others, but they’re there.

My labs in May showed an extremely abnormal number…but no other “typical” autoimmune numbers supported or explained an autoimmune etiology behind this abnormality. 

My rheum wanted my PCP to see me and suggested she begin looking/screening for systemic infections or malignancies. 

My PCP firmly felt this was my rheum’s “responsibility” because she ordered the initial lab work that uncovered the abnormal lab. My PCP wouldn’t schedule an appointment at that time. 

I reached back out to my rheum desperate for help. I have no quality of life right now…I cannot even participate in my own life. She agreed to see me and I made the nine-hour round-trip in June. 

She ran labs on my heart, kidneys, and liver…all acceptable by rheumatology standards…and really believes my PCP needs to be looking elsewhere. 

My rheum did order one last panel of extensive lab work…drawn in June…and ordered an EMG…performed in August. She was screening for Myositis. When I read about Myositis, it sounded like she was on the right track, but the labs and the EMG were both negative for Myositis. 

But…that word “malignancy” still whispers in the back of my mind during my moments of deep frustration and exasperation. 

What if? What if all of the time spent “blowing me off” and “passing the blame” has allowed something…whether it be a system-wide infection or a malignancy OR something completely different altogether…to get worse. 

but, not anymore

I finally got angry enough and confident enough to pursue more on my own. I dug around and found out that I could “refer” myself to Mayo Clinic. I filled out what felt like mountains of paperwork and was promptly denied an appointment. 

I got mad. I got sad. I cried it out. And then I reapplied for a new appointment through a different department and specialty. And…was promptly denied a second time as well. 

So…now what? 

I got mad. I got sad. I cried it out. And then I did some more digging and found out that I could also “refer” myself to The Cleveland Clinic. But…this time the mountains of paperwork led to a one-hour virtual triage appointment followed by an approval for a visit and an in-person appointment at The Cleveland Clinic. That virtual triage appointment was six weeks ago. 

Right now…?

Right now, I’m on my way to Cleveland (with a pit stop in Perrysburg♥️) for two days of consultations, tests, and imaging with five separate specialists. 

And I am a bundle of emotions and nerves. 

I’m relieved that after two years someone finally heard me and believes me. But…the guilt. 

Mike is taking so many days off of work to go with me and it means extra work for him once we’re back…guilty. 

We’re asking family members and friends to transport the twins to and from school, work, and all of their events. It’s a lot…guilty.

It. Is. Expensive! Fuel, lodging, parking, food. And that’s just the beginning. Medical insurance won’t cover everything. Some, but not all. 

Guilty. 

I’m hopeful. Hopeful that after two years, maybe we can get to the bottom of this and I can get back to normal…whatever that looks like. And yet, I’m scared. What if we don’t find any answers? What then? Where else is there? To think that this is it…that this is how life is from here on out…that scares the hell out of me. 

why

I’ve been so hesitant to share all of what I’m sharing and I’m not really sure why…? Is it because I’m tired of repeating the details…to every new provider…and every provider’s nurse…at every single appointment? Maybe.
Is it because I’m tired of the suspicious looks and bored reactions I get while going over all of the details? Possibly.

While I may not entirely know why I’m hesitant to share…I do know why I am ultimately choosing to do so. It is because I’m tired of being invisible, dismissed, and not believed. It is because there are countless patients like me out there begging for answers and feeling ignored. It is because I have this platform. I am an advocate. And it’s time I advocate…for myself.

Oh…and while I’m down here advocating, I have one little favor to ask of you. Could you keep me in your thoughts and prayers these next few days? This is all feeling a little heavy right now and I’m feeling a bit inadequate.
Thanks, friends.🌷