Chronicill

It has been almost 2 months since this hospitalization began. I have the moments where I cry and cry out of frustration, defeat, why me, was I a horrible person in my last life?... but then I have crying moments of pure gratitude. Chronic Illness has shown me more than misery. I cant sleep because I am in too much pain, but I can distract my self with positive thoughts and new outlooks. So what has this complicated life done for me? What has chronic illness shown me? It reminds me of what true, real, genuine friends look like. It reminds me I am stronger on my worst days than some people on their best days It reminds me to VALUE this body that it is, as it is because even when it feels like the final battle in The Deathly Hallows inside of me, when it doesn't, my body is capable of great things. And even when I do feel like trash, if I can stretch and move, god I swear movement truly is medicine. It lets me work out which is the most important tool in my toolbox. Being active is th...

When I say I likely have had upwards of 14 DVTs, I’m being conservative. The most astonishing part? All but one of them—the very first—occurred while I was on blood thinners. I have a family history of blood clots and carry the Factor V Leiden mutation, which makes me more susceptible. I’ve cycled through medications like Xarelto, Eliquis, and Fondaparinux, and I’m currently on the highest dose of Lovenox injections 2x daily. Just in the past two months, I’ve accumulated at least six shiny new DVTs. It’s disheartening to realize that, despite being my own best advocate, it often feels like it’s not enough with many doctors. The constant back-and-forth about a more permanent solution has left me feeling frustrated. I’ve endured countless superficial and deep ultrasound-guided IVs, only to have them fail after a single use, and worse, leave me with a shiny new clot. If they had truly listened to my concerns about my body and my veins due to the hEDS, I wouldn’t be left without a single u...

 Hypermobile Ehlers-Danlos Syndrome (hEDS) is a connective tissue disorder that affects the body’s collagen, leading to joint hypermobility, skin elasticity, and a host of associated challenges. Living with hEDS is like navigating a constant minefield; it’s not just about loose joints and occasional discomfort—it’s a full-body experience that can manifest in numerous ways. Joint Issues: The hallmark of hEDS is joint hypermobility. My joints can easily dislocate or subluxate, leading to pain, instability, and sometimes unexpected injuries. It’s not uncommon to feel like a human pretzel, with my body bending in ways that leave me vulnerable to both acute injuries and chronic pain. Unfortunately, this teams up with my Psoriatic Inflammatory Arthritis causing chronic pain exaserbated during flares.  Endometriosis: This is another unwelcome challenge that often intersects with hEDS. The chronic pelvic pain and irregularities associated with endometriosis can exacerbate the overal...

  Migraines Before I encountered CVS, my first nemesis was Migraines. I was in middle school when I began dreading sixth-period art class. Each day, I’d complain of a headache, blurred vision, and extreme nausea—soon enough, the vomiting would follow. This continued for weeks, leading to a meeting with my parents. I didn’t hate art class; I wasn’t faking it. So why was this happening every day? Why did the same symptoms arise when I walked into my favorite store, Hollister, overwhelmed by its unforgettable smell and blaring loud music? After multiple appointments with my PCP, it became clear: strong odors were triggering my migraines. Around this time, I also started my cycle, and unfortunately, they went hand in hand. At last, we had figured it out—I was experiencing migraines, and this was just the beginning. What started as sensitivity to strong smells (art supplies, perfume in Hollister) evolved into caffeine sensitivity, dehydration issues, MSG intolerance, and the dreadful ti...

Growing up, I faced the world with a mix of clumsiness and resilience. My mom, convinced I was just accident-prone—especially after two back-to-back broken arms—decided to enroll me in karate. She hoped it would improve my self-awareness and balance. Ironically, I never got hurt in karate; instead, it taught me grace, tenacity, and the ability to carry the weight of my struggles. At just 7 or 8 years old, during a visit to UMass Children's Orthopedics, I first heard the term "Ehlers-Danlos Syndrome." Tragically, that was also the last time it was mentioned. Despite my myriad health challenges growing up, no doctor connected the dots. It wasn’t until 2019, during a desperate search for answers as my health rapidly declined, that I revisited this diagnosis. Although it was brought up occasionally, I believed it only affected my joints and mobility. What I didn’t realize was that hypermobile Ehlers-Danlos Syndrome (hEDS) is a connective tissue disorder that impacts the entir...

I remember it all too well, it was rare I was there- Feat. "The Roster" I never thought I would reach that level of comfort to put my raw self out there like this, But this is what weeks to even months can look like for me, navigating and dealing with the multitude of chronic conditions during a flare from one more of my multitude of diagnoses. I feel unreliable as a friend and as a worker. I live in fear that I will wake up and feel sick which will ruin my whole day...work, weddings, vacations, giving my dog attention...which to be quite frank, likely triggers some of my flares. What triggers flares? Stress. I don't want to date because I don't want to share this horrific part of my life. I am a big fake it till you make it advocate...for a long time I didn't think I was "sick enough" to talk about it on the internet, but in my most recent hospitalization lasting almost 2 months, there's no such thing as sick enough. My quality of life is not what i...

 The biggest beast of them all. Cyclic Vomiting Syndrome (CVS) Picture this...its 3 am and you pop up in excruciating pain and actually know you're about to endure the most exhausting days of your life as soon as the first vomit happens. It's unique, I can feel the difference when vomiting if it will be an episode or if it is not an episode and just one of my body's many comorbidities acting up. The above table is a great breakdown of the phases but it is simply a break down...the video below which I will credit was from the NORD site is a great explanation of the episodes them self.  Though it does not get into the pain of the retching when there is nothing left or the fear of the wait time before receiving any relief due to stigmas in the ER and common misconceptions of those doctors who don't take the time to review your history. It is for this reason that I recommend that anyone in my shoes, makes a medical binder . More on that later; check out the video I found b...