Half of My Life

Today officially marks 14 years since my Lyme journey began. From here on, I will live more of my life sick than not. That’s a crazy pill to swallow—and I’ve taken some insanely large pills over the last 14 years .

If you would have told me when I first got my Lyme diagnosis that 14 years later I would not only have Lyme but also 6 other tick-borne infections, POTS, endometriosis, no uterus and Gastroparesis I wouldn’t believe you. On the other hand, if you would have told me 10 years ago, heck even 6 years ago, hell even 2 years ago that I would still be here at 28, with my own apartment, working two grown up jobs, with the greatest, most understanding friends, traveling around the world, with weekdays and weekends filled with adventures, I also would not have believed you. 

14 years ago I got a headache that wouldn’t go away. That headache lasted me for 8 years. That headache turned into arthritis throughout my body—at the age of 14—which turned into hot flashes, tremors, night sweats, heart palpitations, extreme fatigue, low grade fevers, brain fog, blurred vision, floaters, nausea, weight fluctuations and memory issues. Down the line, we added partial paralysis and even full body seizures to that list. 

And that’s just the Lyme. 

Throw in the Endometriosis that included years of painful, heavy, debilitating periods and bloating that messed up my hormones and ultimately led to me getting a hysterectomy at 24. More recently, I have been dealing with almost 8 months of nausea and vomiting due to my newfound Gastroparesis. It's no wonder that I am a ball of anxiety, depression and trauma. 

The trauma and anxiety I have from my actual physical symptoms is easy to understand—hello, I would have seizures and not be able to move my body parts at times. But what’s harder for people (myself included at times) to see is the mental and emotional anxiety that comes with having all of these illnesses, especially when Lyme disease (I guess you could say all of my diseases) is such a wildcard. 

There is no cure for my ailments. All of them are understudied and misunderstood. Heck, most medical professionals know less about Lyme than I do. Lyme disease can present itself in so many ways and possible symptoms that many people misdiagnose it for some other disease. What I have learned over the 14 years is that between the infection itself and the treatments, Lyme can also damage the body in ways it can never fully come back from. It is no wonder I recently started anxiety meds again because woof. 

A sampling of questions that run through my mind on a frequent basis:

• What symptoms may pop up today?

•  Am I tired because I was doing things all week or am I tired because my illnesses are active?

• Will those lights make me have a seizure even though I haven’t had one in over a year and a half? 

• Is my heart beating abnormal?

• Am I bloating from the Endometriosis that could have been left?

• Or maybe Gastroparesis?

• Will I always have these gaps in memory?

• Will I throw up today?

• Am I going to gain any weight back?

• Will my body ever be mine again?

• What if it comes back and the symptoms are worse or the treatment doesn’t work? 

Then come the fears and anxieties from the actual care and treatments I have been through over the years: 

• What if the doctors don’t believe me?

• Will that medicine cause me to have side effects?

• What if no one can help me?

• Will the bath make the pain better or make me faint?

• Am I having another pulmonary embolism or is my chest just tight from the Lyme? Or anxiety?? 

• What if the tests say I’m normal?

• What if I miss when stabbing myself in the chest to access my own port and have to do it again, again? 

• What if the tests show something is wrong?

• What if it’s all in my head like that doctor told me it was all those years ago?

• Why can’t anyone help me? 

And I won’t even go into the financial and social burdens and anxieties there. 

All of this is to show that Lyme disease is a bitch. Someone once said that “Cassidy is always doing life in hard mode,” and honestly, it feels that way a lot. 

Do you know what it’s like to have to have your mom and sister literally bathe you in your late 20s because you are too sick and weak to do it yourself? Or have your brother in law carry you because you are paralyzed and can’t move? To have your friends break into your apartment because you are paralyzed on the couch and can’t get up? What about having your niece and nephew know that if Bae Bae puts her hair back and takes her glasses off that means she’s about to throw up her dinner? Or the feeling of not being able to trust your own body because the diseases throughout it have overpowered you time and time again? 

That’s what life with chronic Lyme disease is. It’s horrible. It is unpredictable and I am, unfortunately, a pro at it. 

But I have been so lucky over the years to have the best support system. My family who has literally carried me through the darkest days. My friends who pick me up when I’m down and make me laugh so hard my stomach hurts (in the good way). The doctors who have actually believed me, listened to me and not given up on me—Dr. Seyedan, Dr. Mangat, Dr. Peters, Dr. Charbel. My main girl Tonya (aka my therapist) who has been helping me battle my layers and layers of demons. The chronic illness community who has helped me so much over the years to not feel as lonely as this sick girl's life can seem. 

My life has not been what I pictured, but it’s somehow better. Would I give up the suffering and pain? 1000%. Any day. But I’m so grateful for where I am, the person I have become and the people I have met along the way. I will never go back to pre-Lyme Cassidy. But I’m a big fan of this Cassidy. The one who sings and dances in her apartment. The one who makes jokes about her illnesses to get through the days. The one who is obsessed with her niece and nephews (and niece to come!) to an unhealthy level. The one who makes clay magnets and crochets like a grandma. Who reads smut and romantasy and falls for fictional men left and right. The one who, despite the constant bombs thrown her way, preserves through the bad (she may break down, sob uncontrollably, and wallow in self pity first but, nevertheless, she persists). 

Lyme disease is real. Lyme disease is scary. Lyme disease can seriously alter your body, life, soul and mind. Please, please, PLEASE, take it seriously. Please use precautions. Ever. Single. Day. Ticks don’t go away. They’re always there. And once you get Lyme, it’ll always be there too. No one should have to live with this disease. Maybe one day, there will be a cure. But until then, prevention and awareness are key! 

Make sure you use your tick repellent (I like to spray my shoes with this and you can even wash your clothes in it too), wear long sleeves and light colors so you can see the ticks on you and do your daily tick check! 

If you find a tick, it is important that you KEEP the tick and send it off for testing (the testing on the ticks is more accurate than the testing on humans). 

Lyme sucks. Stay safe!