Growing Deeper Roots: My Story of Invisible Illness

The other day my friend Kate asked me a question about how I was feeling. I'm so used to spouting out my BP or HR in response to "How are you?" or giving a generic "Oh, you know, been better been worse" or the ever so popular "Fine, how are you?"  But Kate was more specific. She asked me how I was doing with adjusting to the new phase of all of this. The phase where we've stopped looking for a solution to my syncope and started working to adjust and manage it. Learning to live with it. Creating a new normal.  I hadn't realized it until that point, but I have been feeling frustrated. When I was first diagnosed with the tumor I was scared, but I was determined and hopeful. I've lost that. In the last few weeks I have lost hope of an independent existence or a normal life without fear of fainting. I've stopped saying "When I get better..." My mindset has shifted from defensive action to maintenance and survival. People ...

Today I had a follow-up visit with my Frederick cardiologist and the electrophysiologist that serves their office. He reviewed the results of my last Holter monitor and we updated him with all the new information we had about the pituitary and POTS. After reviewing my Holter monitor and doing an orthostatic test in the office, Dr. Sinha confidently disagreed with my POTS diagnosis. We showed him the work up from the Tilt table test at Johns Hopkins and he told us that it was not performed for a traditional POTS test. Great. His opinion? Neurocardiogenic syncope, the same diagnosis I was given in March. However, unlike the 2 cardiologists in Chestertown who wanted to load me up with Midodrine and ignore the possibility of any other cause, Dr. Sinha wants to look further into the cause of this syncope. With a diagnosis like neurocardiogenic syncope you have an explanation of the physics behind the symptoms but not necessarily a cause for the mechanism causing this abnormal reactio...

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 ...