Growing Deeper Roots: My Story of Invisible Illness

"Everything happens for a reason." -Someone who has never mourned.  This dangerously misled and shallow misinterpretation of life is nothing less than emotional, spiritual, and psychological violence. It is nothing less than utter bullshit.  Whether you are mourning the loss of a loved one or a failed relationship or your lost health, this is the last thing you want to hear but it will be said to you. Someone out there with their incredibly naive perception of reality and Pollyanna outlook on your tragedy will utter this bullshit in response to your pain.  "Everything happens for a reason," "God has a plan," "This pain will make you a better person," and all your other painful paradoxical platitudes will not make it easier for me to watch my life shift in response to my lost health. All you are doing with these phrases is replacing my grief with unsolicited advice.  Now, I'm not saying that I do not recognize that I have grown immens...

Sometimes, the hardest part about being sick the way that I am is that on most days, I don't look sick. I suffer from an invisible illness. Those who I haven't told, don't know that I'm sick and those who do know, rarely understand the severity.  In my last few months, I have felt misunderstood, doubted, and judged because I can't do what a healthy person can...and yet, I look healthy. Managing my invisible illness, neurocardiogenic syncope (whether from a virus producing POTS or from my pituitary macroadenoma) would be significantly easier, if people understood it. Unfortunately, I have rarely met anyone who has any familiarity with dysautonomia.  Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The autonomic nervous system controls "automatic" functions of the body like heart rate, blood pressure, digestion, pupil dilation and constriction, kidney func...

Thursday I moved back into college. Although it had only been 3 months since I left, things feel immeasurably different. I feel immeasurably different. I moved into a suite style dorm with three of my best friends: Erin, Anna, and Cat. With every worried thought and dreaded moment about returning (see last post), I reminded myself of how great living with these girls will be. They (the universal 'they') tell you that you won't keep your 'freshman orientation friends,' but they haven't met these baller chicks.  Erin is everyone's pseudo mom. She will be proud of me when I'm doing well and love and console me when I'm down. I can already see her cheering me up even when she doesn't know I need it.  Anna is my school version of Kate. She can be weird and goofy with me and then turn around and give me the best advice, and hugs, a girl could ask for. She is, and always has been, great at looking out for me and I'm 98% sure that she...

My last day of PT was Wednesday. Kate and Hannah drove me since my mom has returned to work. I had a really good session (especially compared to my last, when I fainted) and I spent the entire time talking with Maddie, the assistant, and Kevin, the owner. We talked about the ways I can continue working towards progress at school and they congratulated me on the progress I've made in PT. When I left the hospital, I was barely walking and staying upright on my own. It took us a while to find Kevin and McLaughlin Physical Therapy but when we did I started seeing some improvement. My improvement is most apparent in the analysis of my tachycardia. My resting HR is falling and my flares of tachycardia are becoming much less extreme. After the session and my "graduation," I got a t-shirt. It's pretty awesome. Then, Hannah and Kate drove me home and fed me chocolate covered bananas, as real friends often do. 

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 was one of the very very rare days that I didn't feel like a sick person.  Yes, I got winded going up the stairs. And I had to wear my compression sock. And my Fit Bit alarm (to tell me when I'm going into Tachycardia, as if I can't feel it) went off several times. BUT! I went to the Oriole's game and celebrated my mom's birthday and did normal people things!  Dad has Oriole's season tickets but I hadn't gotten a chance to go at all this summer because...well, I've been a little preoccupied. Today, Dad and I went and we had a nearly episode-free time. The game was a blast (we won 18-2) and the weather was perfect.  I had to concentrate on hydrating consistently since it was in the high 80s and I was exerting myself. It wasn't until we were leaving and I had to go up a couple steps that I felt symptomatic. I had to take a break at the top of the steps but Dad was there to help me rest. As I sat against a wall and caught my breath and l...

Today, I'm feeling a little defeated. Maybe I got cocky or too comfortable with the last few days of normalcy. Monday, Tuesday, and Wednesday were really good days for me. I had a slight headache on Monday, but other than that, I have been fairly non-symptomatic. I started doing some normal things, shopping with Kate, going to the dentist, going out to dinner. I even went to see Jim Gaffigan at the Wolf Trap. I've been feeling pretty good. Until today.  I knew when I woke up, with a BP of 78/68, that it wasn't going to be as successful of a day. My stomach was hurting, I felt a little foggy, and by noon, I had fainted.  Still, I went to PT with the hope of getting my energy level up and leaving the session feeling better. Well, I made it half way through the session before the squats got the better of me. This was the first time I've ever fainted in PT (this office, at least). Kevin, my physical therapist, was right there with an additional spotter so I did not h...

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...

I've been into yoga for a couple years now. I can force myself to run or swim for exercise but yoga is really the only exercise that I can honestly say I enjoy. It helped me get through a lot of stress and anxiety in high school, it's helped me with my IBS and GI symptoms, and when I first started having syncope it was one of the only things that made me feel normal. But as my symptoms and condition got worse and worse, I wasn't able to keep up with it.  Today, my mom and I went to my first chair yoga class. We went to Sol Yoga in Frederick. ( http://www.solyoga.org/ ) Mom had been there a few times for drop in classes and she used to go to the Sol Yoga in New Market for Happy Hour Yoga (yeah, that's a thing, it's also one of the things I can't wait to do when I turn 21). I was a little nervous cause it had been weeks since I had done any yoga and I had never tried Chair Yoga. I had no idea what to expect.  There were about 10 of us in the class. We each ha...

I don't know if I ever really understood "living for the weekends" more than I do this summer. Last summer I worked at an all day summer camp. It was exhausting and sometimes frustrating but I really liked it. I felt like I was getting a lot of fun exercise and vitamin D. Then, I had money to spend during the weekend. I could drive to my boyfriend's house and visit him and I got to spend free time with my friends. I was starting to experience the fatigue, muscle pain and GI symptoms that have since wrecked havoc on my body, but I was still functional. I was still independent. During the school year, I had a busy stressful schedule, but I loved every minute of it. I love learning and I loved all my jobs at school. Weekends were fun, but so were weekdays. I had control of my life.  That's not what this summer is like. This summer, I spend every day researching self prescribed physical therapy, crafting an anti-inflammatory diet, and trying to work towards a more ...

So it has been another roller coaster of a week. And you all know how I feel about roller coasters.  After Monday's half productive half syncopal session of PT, I was given a lot of fluids and more medication.  Tuesday morning I was told that we were not at the point of discharge/transfer because my level of abilities and baseline health were too low. This was very upsetting because I felt ready. And I knew that if they would give me the chance to work with PT and OT, I could show them that I was ready. However, I was only ever given 30-45 minutes a day with them so I could never really prove my potential. To make it all worse, they never even saw me on Saturday, Sunday or Tuesday. This series of events made me very frustrated and angry. There were many tears of frustration.  Yesterday we were told that between the OT and PT recommendations and the insurance companies utter tomfoolery, I would probably only be approved for sub-acute rehab. Sub-acute rehab is basica...

The other day, I fainted in PT. I had had a really good session, making it up to 80 degrees on the tilt table and tolerated it for 13 minutes. However, while trying to sit up after the session, I fainted, giving one of the med students on my case, the OT, the PT, and my mom and sister a good scare.  While I was trying to recollect myself, the group discussed how they could tell I was about to faint. My mom said her classic line, "I can see it in her eyes. They lose their sparkle." My OT said she could see it in my breathing. My PT said he saw it in my heart rate. But they all agreed that my eyes go a little duller right before I pass out. They even compared me to the Genie in Aladdin.  Our discussion about my fainting eyes got me thinking. I've learned a lot during this process and one of the biggest things I've noticed is how people respond to this tumultuous journey. You can always see it in their eyes.  When I bring up Lyme to the cardiologists, their e...

Hello outside world! It's the end of Day 2 in Johns Hopkins and I just got my laptop so here's the update.  After my lovely weekend with my friends, I spent most of Sunday relaxing on the couch. My BP was not great (78/49) and I spent a lot of the afternoon working to raise it (If I ever liked Gatorade, I don't anymore). After dinner I felt very ill. I got nauseous, with very little energy. I could feel my BP dropping so I spent the evening in the wheelchair. my vision went blurry and I couldn't focus on anything. In the middle of a conversation with Ally, I fainted in my chair. My family worked to pick me up out of the chair and lay me flat to try to regain consciousness. I was out for about 3 minutes and then spent another 20 minutes going in and out. When I tried to get up to use the bathroom after resting, I fainted again. I couldn't stand or walk or hardly sit up.  So we went to the Emergency room at Johns Hopkins Bayview Medical Center on Monday morning....

I've heard this is true for many chronic illnesses and I've seen it to be true for myself: there are good days, there are okay days, and there are bad days.  When people ask me how I'm doing I usually respond with "I'm alright," or "I'm okay today." But when I have the bad days, the dog days, the rough days, it's hard to lie. This is when I usually say something vague like "Oh you know, there are good days and bad days."  Unfortunately, I can't control when those days come. If I could plan them, I would choose days when I have no plans and it's raining, or days when I can just lay in bed. I wouldn't pick the days when I have family visiting, or I want to go out and see friends, or when I have plans to actually have a life.  Today was a dog day. Today was a 4 faints in 4 hours day. Today was a vertigo day. Today was a nauseous day. Today was a leg spasm day. Today was a brain fog day.  But today was also Father...

Three tests done! Today I had the ultrasound and the MRI. Ultrasound was easy and uneventful.  The MRI was kinda cool. Luckily it wasn't just a tube, it had openings on the side so I didn't get too claustrophobic. They also gave me headphones and let me listen to the radio. However, I'm pretty sure that being told I couldn't move made me develop itchiness all over my body. I had no desire to move until I was in there and couldn't.  I also needed an MRI with contrast so I needed to get an IV. Unfortunately, it's really hard to find veins in my arms and hands since I have extremely low blood pressure. So that part wasn't fun but eventually we managed.  The place we went, Family Imaging in Frederick, was very nice. The people were really friendly and they played music and gave me a blanket. Take away the giant magnets and it could've been a spa. AND they gave me a disc of picture of my brain. So now I'm blogging them, like the little wei...

Okay, fair warning: This post is going to consist of me rambling about being a huge baby when it comes to needles and tests.  I went to a new cardiologist and neurologist yesterday. Two appointments for a total of 4 hours of answering the same questions for the 100th time.  In addition to the usual recommendations (drink more water, eat more salt, stand up slowly) both doctors ordered a slew of new tests. Luckily, I have nothing better to do than sit in an MRI machine for several hours.  Between the two doctors I have the following tests to do: MRI (brain) with and without contrast MRI focus on pituitary gland MRI with orbits MRI cervical MRI thoracic MRI lumbar Carotid ultrasound  More blood work Ophthalmology evaluation Tilt table test Electrophysiologist evaluation Stress test Another Holter monitor So I've had a ophthalmology evaluation before and I'm not too worried about that, except when they blow in your eye--that's just obnoxious. I'v...

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 ...