One Year... - Strength Disguised

One year ago today, I was diagnosed with late-stage Lyme disease. I had been sick for years, misdiagnosed dozens of times, and tested for just about everything under the sun. I suffered from countless symptoms – relentless pain, dizziness, irregular heartbeats, low blood pressure, numbness and tingling in my extremities, memory loss, swelling, extreme exhaustion, anxiety, malnutrition, nausea… this list barely scratches the surface. For years I pretended I was ok. I hid how I felt from almost everyone – even most of the people closest to me had no idea what I was going through. I fought through every day trying to convince myself that I was fine. I worked countless hours, ran marathons, did CrossFit®, completed my degree, and did everything in my power to convince my mind that my body was okay – despite the painfully obvious fact that my health was deteriorating before my very eyes. After nearly hundreds of tests and being treated for various illnesses to no avail, I felt hopeless and that my life was over. That’s when I met the internist who changed my life.

A new symptom had developed suddenly that landed me in the ER. My legs had given out, I couldn’t walk on my own or use my hands, and my ability to speak was gone. It was a terrifying experience, but the symptoms eventually abated with time. When I followed up with my internist the next week, it gave him the idea to test for Lyme disease. After learning that my symptoms would come and go randomly, and since he had tested me for damn near everything else, it was worth a shot. (Just FYI, Lyme disease tests given at your local doctor’s office are wildly inaccurate so you have to get a specialized test from specific labs). I was off the charts positive for Lyme plus several co-infections – all from a tick bite (they’re dirty little creatures)!

Since starting treatment, I’ve learned a lot about the illness – way too much to write about now. (You can read more about it here.) I will say that it completely flipped my life upside down. The treatment has by far been worse than the illness (at least so far) but if I want to live, I have no choice but to go through it. In the past year, I have gone from my active, creative self to a person I don’t even recognize. I had to quit working, I can’t drive (but on rare, good days), I can’t run or work out, and some days I can’t even walk. Reading and writing (like I used to) have become exceedingly challenging and my memory is shaky at best. I have gone days without even looking outside. I’ve had countless IVs and shots, and taken handfuls of pills multiple times per day. On good days, when I can leave the house, mostly I have to use a walker or cane or even a wheelchair. I’m in constant pain, I live on the couch, and I’ve watched enough TV for a lifetime. I say “no” to almost everything with everyone. Every part of who I was and what I identified with, is gone… at least for the time being.

One of the hardest parts of battling this illness though, despite the loads of support I have, is that it still feels so lonely. It is lonely because it is almost entirely misunderstood, because it is politicized in every way – from diagnosis, to treatment, to duration of treatment, because insurance covers almost nothing and the majority of physicians have almost no knowledge surrounding this illness, and because I look so “normal” on the outside. It is lonely, despite the hundreds of thousands who suffer from Lyme disease, because there is no set treatment plan. Every individual is different in their response to treatment. Currently, I’m at a crossroads in my plan. Many of the original treatments I tried have failed. I’m now left to make decisions about my health that are confusing and controversial, and quite honestly a bit terrifying. The latest treatment decision seems to be a good one so far (that’s what’s tricky about Lyme – things can change very rapidly – for better or for worse). In that, I will say that I have hope for what lies ahead and am keeping my faith.

There is so much more to my story than the tidbit I’ve written here, but I just wanted to share a little of my story on the one year anniversary of my diagnosis. I also want to say how grateful I am. Thank you to my friends who have brought over dinners, kept me company, and have just been here through the hardest trial of my life. Thank you to my family members (both near and far) who have sent words of encouragement, given many thoughtful gifts, and provided rides to countless doctor’s appointments. Thank you to my mom, who has all but given up her life to care for me. Lastly, thank you a thousand times over to my husband for loving and caring for me unconditionally and completely. You, my love, are an incredible human being – I love you more than you could ever know.

This battle has been harder than I care to admit. While I’d like to say I have handled this all with grace and positivity, that couldn’t be further from the truth. I’ve been angry and sad. I’ve cursed and cried. I’ve shouted, “Why me” and I’ve begged and pleaded for my health back. I’ve had days (most days) where I couldn’t see past myself and my situation, but in all that, I have learned (am learning) so many beautiful lessons and I truly couldn’t be more grateful. I know in my heart, no matter how long this battle may take, that there is life beyond this disease. Thank you to those of you who saw that even when I couldn’t – and thank you for the gentle reminders.