Growing Deeper Roots: My Story of Invisible Illness

Writing about my journey with chronic illness has been both therapeutic and difficult for me. Many times, processing my pain and recovery is more easily done when I start writing about it. Other times, the stage of recovery in which I have found myself is so full of complex emotions and thoughts, that stitching them into words coherent to another person, even one on a similar journey, is just impossible.  So I have been upfront when writing this blog, letting you know that my posts might come more sparingly as the journey's direction changes. When I started going to therapy and working on the grieving component of my illness, I was honest with you, letting you know that I wasn't always going to write about the process, I would have to keep parts of it private. That's the stage I was in most of this spring, sorting my own thoughts out and wondering if I'd ever be able to put them into words. Or if I would ever really want to, if I would want to open that story up to...

I talk a lot about the frustration and difficulty that I face every day with my struggles with dysautonomia. I can't pretend that this is a battle that I wanted to fight or a gift I wanted to receive. But it is something in my life. It is something huge that was thrusted upon me and I can't change that. So sometimes, I have to own it. I have to proudly wheel through the grocery store. I have to make tumor jokes. And I have to take note of the changes that are happening in my life, because although they feel out of my control and some of them just really suck, there are a few changes in my life that aren't so bad. Saying that the tumor and the dysautonomia gave me something positive sounds odd, but when you're faced with a something like this, sometimes it helps to count the blessings. If I had never started faint, if I had never found the tumor, if I had never gotten sick, I would have spent my summer in Scotland or D.C. working life changing internships and taking c...

When things started to get bad for me and I started to lose parts of my life to my illness I read up a lot about my symptoms. I read a lot about Lyme and POTS and Pituitary growths. I read medical records and reports. I read everything I could find online about treatments and illnesses. I read news articles about new research. And I read personal blogs. I learned a lot from experts, researchers, and patients. I came into this fight armed with information and knowledge so I could be my own advocate. However, nothing could have prepared me for what would really happen. Nobody told me how hard it would be. I knew I would have needles and IVs shoved into my arms and back and legs and everything. I knew I'd be peeing in a commode. I knew I wouldn't be able to shower. I knew I would be uncomfortable and sometimes in pain. I knew it was going to be a long recovery. But there were many things that no one warned me about. No one told me I would feel guilty. I never imagined that ...

I'm on a roller coaster. And for someone who faints at the slightest increase of altitude, this is not good.  BUT! I have an update.  After many tests and a hormone treatment/analysis my team here at Johns Hopkins Bayview Medical Center has decided that removing the tumor is not our best option. From here they have diagnosed me with POTS.  POTS is a type of dysautonomia that is characterized by orthostatic intolerance and excessive tachycardia. POTS stands for Postural Orthostatic Tachycardia Syndrome and affects over 1 million Americans. While there is no definitive known cause for POTS, many believe that viral infections can cause this malfunction of the automatic nervous system. One of the leading viral infections to cause POTS? Lyme disease. (I think I've seen this tree before) While the name and credit of POTS is relatively new (1993), the syndrome has been around for a while under many other names.  Treatment of POTS is difficult because it is o...

Sometimes, mostly on Twitter, I have a self deprecating sense of humor. A while ago I tweeted something snarky and jaded about my struggles. In my attempt to be funny but blunt I tweeted this:  And to be fair, I'm mostly right. When we are hurting we like to listen to music that we can relate to. That's why there are about a zillion songs about heart break. There I was, extremely frustrated with the state of my life and feeling extremely isolated. I have great friends but none of them understood what I was going through. My family is extremely supportive (trust me, there are days when I need to be escorted to the bathroom because I can't stand on my own. My sisters take turns helping me to the bathroom. That is love right there) but when I'm having hard days there is only so much they can do.  At the end of the day, I can listen to Taylor Swift when I need to wallow in self pity about my failed relationships. I can listen to Justin Timberlake when I need...

One of the cool (I use this word loosely) things about being in the Lyme community is that it is HUGE. Now on one hand this completely sucks because there are 300,000 new Lyme patients every single year and the majority of the political, social and medical world is ignoring us. But on the other hand, this means that even when I'm laying on the couch all day alone at home watching all my friends post summer fun pictures from all over the world, I know that I'm not really alone. I might be confined to my bed during the majority of the summer and my socialization might be limited to interactions with doctors and my caregiving family, but while reading blogs from all over the world (Lyme is worldwide, don't forget) and connecting to other people who are going through this too, I can keep a little bit of my sanity. So I've collected some of my favorite and most relatable quotes from other blogs about Lyme disease and Chronic illness. Here are a few. From  Maisie  of Lyme ...