A Message of Gratitude for Dr. K on My Long COVID Journey: Amy’s Story

A Message of Gratitude for Dr. K on My Long COVID Journey: Amy’s Story

From 2010 to 2018, I experienced chronic migraine. I was in excruciating pain for 20 to 25 days out of the month. I tried everything and saw many healthcare providers. Sometime around 2015, I happened upon a headache specialist, Dr. K.  
When I first met her, I thought she was kind of goofy. She presents herself as a grandmotherly type but has a child-like way of speaking. She giggles a lot and says things like, “We have to get you BETTER!” in a high-pitched tone. 

I must admit, I almost left her. A silly healthcare provider wasn’t my thing.  

I stuck it out, and now she’s my favorite provider ever. She is determined in the pursuit of effective treatments and willing to help you try anything Western, Eastern, or otherwise to get better. 

I remember being down about some bizarre migraine symptoms (changes to my gait and weird cognitive issues like stopping at green lights).  

 I told her, “I know this makes me sound crazy...”  

She stopped me there and said, “Don’t do that to yourself. Women are doubted and not believed so often, and it’s got to stop. You know your body better than anyone. I believe you.”  

I was stunned and could have cried. I wasn’t crazy; I was ill.  

She never gave up on me. Eventually, we found a winning combination of treatments that resolved the chronic migraine (a combo of dietary changes, an intrauterine device (IUD), and a monthly preventative self-injection medication). 

When I got COVID in March 2020 and my longtime primary care practitioner (PCP) at the time gaslit me and treated me terribly, Dr. K stepped in. She ordered magnetic resonance imaging (MRI) and found a brain lesion that wasn’t on previous MRIs. She referred me to specialists. My journey for answers and compassionate care began with her. 

The long-term disability insurer wanted to hear from the first healthcare provider who treated me for the condition. I put Dr. K’s name down even though she hasn’t been treating me for long COVID (just headache management; surprisingly, I’ve had very few over these last 2.5 years).  
My appointment with her to fill out the disability paperwork went very smoothly and quickly. At one point, as she was filling out the forms, she said to me, “I’m so glad I can help you with this.” 
Ummm, WHAT?? Come again?? For real?!  
Even the very good providers out there hate filling out disability paperwork because they know it means the insurer (and likely the patient, too) will continue to hound them for the duration of the disability leave. She wasn’t thinking about herself at that moment; she was thinking of me, her patient.  
As the receptionist was getting ready to fax my forms, and I was thanking her profusely, she said, “I’ve known you a long time now.”  

I believe this was her telling me she trusts and cares about me.  

So, my big win on this journey is having an incredible professional in my corner. Dr. K., keep being goofy. I very much love and am grateful for you.  

Amy Siniscalchi (she/they) is a person living with long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), first infected in March 2020. Although now disabled and unable to work, they spent their 25-year career advocating for victims of domestic violence, human trafficking, and trauma, the latter years from an anti-racist/anti-oppression lens. They now use those skills to advocate for long COVID and ME/CFS and research whenever possible. Amy is a proud spouse, sister, auntie of six (soon to be a great auntie!), cat mom, hiker, and word game enthusiast. 


Kindred Contributor

Kindred Contributor

If you're interested in sharing your story or experiences with the Kindred community reach out to the Content and Community Manager at Talia@hugo.health.

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