Growing Deeper Roots: My Story of Invisible Illness

It's been almost 2 years since I have posted to this blog. Believe me, I have tried. I have about 25 saved draft posts that never got published because they ended up sounding like the same repetitive story. Another pattern of rumination. Another soliloquy of self pity.  That's because the last three years of my life have been fairly cyclical and unchanged. I have a few good weeks where my symptoms plateau and I faint only once or twice a month. Then, a storm hits. I get a cold and I crash into a regressive phase where I faint daily, injury myself, get frustrated, and then slowly move back up to the plateau.  I have been tired and frustrated as I put grad school on pause, as I continue living with my parents, as I take three steps forward 2 steps back. So I stopped blogging and started to do what I could to move forward, pretending I am not sick, and working on ways to get healthier like a normal 24 year old. But still on pause.  But over the last few weeks, ...

As you may remember, I am on the (seemingly endless) waiting-list for a service dog. The organization I am working with is called Canine Partners for Life. The only thing that makes me feel better about how long and excruciating this wait is, is knowing that I’m waiting for something great and that as I’m waiting, K9P is getting better at training and matching dogs. Learning about this process has been such a joy. It started in August of 2015. I researched many organizations that worked with alert dogs and choose K9P because they had the best reputation, highest success rate, friendliest staff and alums and community, and a great structure to their organization. Training dogs can be difficult and training them to do tasks for people with disabilities is an art. K9P provides and sustains professionally trained service and companion dogs by using positive reinforcement. They train their dogs to meet the specific needs of individuals and the environments in which they are liv...

As it is with every New Year, my newsfeed has been covered with reflections of 2015 and resolutions and promises for 2016 this week. As I watch the hardest year of my life come to a close, I can't say that I am even slightly sentimental. 2015 was an asshole and I'm not going to miss it at all. I walk into 2016 beaten and bruised from all the bullcrap that 2015 put me through. Though I am trying to be hopeful for a better year, I am facing 2016 with the reasonable expectation that it could be just as challenging, but this time I'm a bit more prepared and a heck of a lot stronger. So I've made a decision.  As the longevity of my disability has become more and more apparent, I have begun making plans revolving around my new normal. I started with the investment of the wheelchair. I had to plan a way to make it through the semester at school with my limited independence and mobility. Now, I'm looking more than a few months ahead. I'm coming to terms with the card...

When people talk about the "isms" in society, racism and sexism are usually the first that come to mind. Later in the list comes agism. Often forgotten and misunderstood, is ableism.  Ableism: Discrimination in favor of able-bodied people.  In the last 9 months of my life, I have thought a lot about ableism. A year ago, when I whole-heartedly identified myself as "able-bodied," I never even considered the nuanced meanings of "disabled" or "abled." I assumed that, like the other "isms" I've learned about or experienced, the categories were cut and dry. You were either "able-bodied" or you were "disabled." I never imagined that I would one day live in the hell that is the grey area.  On my worst days, I am undeniably disabled. I am in bed or, if I must go out, I'm in the wheelchair. On my best days, I am walking on my own and participating in society like an able-bodied 20 year old. That lasts for about ...

Last night, our Peer Mentor boss took the team to an outdoor school called Echo Hill. We went to this out door school in August to partake in some team building exercises. This time we went at about 6 pm and got to watch the sun setting on the Chesapeake. We played some games and went on a night hike, ending the evening on the beach cooking s'mores. It had every ingredient for a lovely fall night.  But, my foot still hurts whenever I walk on it and my heart and head aren't too good with the whole hiking thing. I was managing fairly well but I had to take breaks to sit and avoid syncope episodes. I was with Alex, a good friend of mine who is also a peer mentor, and he helped me up and down every time I needed a rest.  When I stopped for the longest period of time, the guide came back to me and asked if I was okay. I told him that I had a heart condition-cause explaining my disability isn't always my favorite conversation and it often doesn't even help clarify anythi...

It has been a beautiful week here in Chestertown! We have had gorgeous Fall weather all week and I'm loving it. But, when I said that I love Fall, I didn't mean that I like to fall. But I did. And I hurt myself. Wednesday night I had a bit of an issue. I got out of bed to go to the bathroom and I fainted/tripped and fell hard to the ground. My foot rolled and made a loud popping noise (according to my roommate, who was awaken by this noise and my fall). Then, it quickly swelled to look something like this: I'm no doctor, but I'm pretty sure that that bump isn't suppose to be there. Just a hunch.  So I iced it and went to the Health Center on campus in the morning. I don't remember how much I have talked about the Health Center at WAC but there are great! I usually see PA Beverly Clarke and she knows my whole situation as well as I do. She is a God-send and has made this whole process much easier. Anyway, she sent me to the hospital for X-Rays. At ...

As I mentioned a while back, I was in a senior thesis production this semester. It was a two character play called Running by Arlene Hutton. I took on the role because I needed to have a creative outlet while pushing through my last year at WAC. It was a tolling process and there were many times, like two weeks ago when I could barely stand without fainting, when I thought that I had made a horrible mistake when I committed to the show. I was terrified of fainting on stage or falling into a brain fog period while performing. I took a major gamble.  The crew worked to develop a plan for every possible situation that could arise. I had an understudy ready to take my place in the worst case scenario and the ushers and house managers were alerted to the possibility of a potential episode. I had a heart monitor on the whole time and the stage manager monitored my heart throughout the performance, with a threshold in mind for an indiction that I was symptomatic. We even had a "fainti...

I've written and spoken a lot about the difficulties of getting diagnosed. I spent years suffering from various GI symptoms before my fainting spells got severe enough for me to be diagnosed with POTS (and then diagnosed with several other types of dysautonomia). Even once I started fainting daily, it took me four months to hear the word "dysautonomia."  That was frustrating.  Know what was 10x more frustrating? Coming out of the hospital, being told that if I wanted to ever feel normal again I would have to go through rehab and physical therapy with a specialist who was familiar with dysautonomia and how to treat it, and then being told that there were only a handful of those doctors and none of them were taking new patients.  I was in the same city as one of WORLD'S BEST POTS doctors, but I was 20 years old and he was a pediatric specialist who wouldn't accept me as a patient. I was less than an hour from another POTS specialist, but his hands were alread...

I guess I spoke too soon. It seems like every time I have a victory, my body reminds me that I'm sick. Last week was lovely. I was feeling strong and able-bodied. I fainted Friday but I got back up and had a nice weekend with my family and friends.  Sunday evening, I could feel my body starting to tire. With thesis deadlines, the show coming up, and the excitement of feeling even just a little bit more normal, I ignored my fatigue.  Monday was an exciting day for me. One of my favorite political journalists was visiting my campus and my Media and Politics professor, who is also my thesis advisor, was hosting a dinner for him. Being the blessing of a professor that she is, she sat me next to him and I got to pick his brain for a three course meal. As I sat there talking to him about Trump-fever and Jeb Bush's pathetic campaign, I could feel my mind beginning to fog.  I got through the dinner and his talk that followed, but most of his talk was blurred in my mind. I couldn'...

It is the end of another long week. I've always been one to love school and this year, though more difficult than ever before, is no different. In fact, after just the first two weeks of classes, this year has been quite rewarding.  But, the week didn't start out that way. Sunday night, only five days ago, I was frustrated. I was very very frustrated. I was finally admitting to myself that I was thinking of leaving. I even said the words out loud. As much as I wanted coming back to school to work out, I wasn't sure that it was. After a frustrating day of callbacks (callbacks that I thought went poorly, at the time) and unfinished homework, I had a mini meltdown.  Luckily, as you know, I have friends sent from heaven. So I spent a good hour and a half crying and spilling out all my frustration on my friend Alex. Alex knows me extremely well. We've been friends since freshman year and we spent a good bit of our friendship as a couple. I thought it would be hard to co...

I have finished my first week of classes post illness (I say post, as if I'm out of the woods, I'm not). I'm only taking 3 classes this semester since I am now working on my thesis. Sooo...that's still 20 credits. Whoops. Luckily, classes are interesting. I'm taking my senior seminar, environmental economics, and congress and the legislative process. I'm also auditing media and politics because it just sounds so interesting and I'm a huge dork. It's very hard to get around campus on my own. I'm not confident about walking without the chair alone so I'm still in it most of the time. While this makes my arms look fantastic, I'm tired almost all of the time. Luckily, I have possibly the best group of friends in the entire world. There have been numerous times when I have just gotten too tired to wheel back to my dorm and I've texted my friends and they've dropped everything to come help me. There have been a similar amount of times ...

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...