Growing Deeper Roots: My Story of Invisible Illness

In the midst of my syncope episodes on Sunday night I ended up lying on the bathroom floor with my entire family. Often when I faint I bring someone down with me, but sometimes I faint and my family just sits on the floor with me until I'm ready to get back up. And sometimes, we all end up in a puppy pile of syncope bonding. And then we take selfies. 

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....

So I've heard that when kids get tumors or cancer or other scary illnesses the doctors or parents will name the illness so they can pretend it's just a super villain that the kid needs to defeat. They try to make the kid feel like a strong superhero. Sometimes with a name, the disease isn't as scary. I don't know if this is true but I like the idea. I like the idea because I love to smack talk. I was never much of an athlete but I'm still fairly competitive. I like the idea of destroying this tumor while calling it by name. On Facebook, I posted a request for suggestions. It was a fun conversation. It sucks that I have a brain tumor, and all, but like hell if I'm not going to make the best of it. There are so many opportunities for jokes and fun here. Game on, tumor. Game on. Please post your own suggestions for a name in the comments! I'll pick a few of my favorites and take a poll!

Friends,  I'm overwhelmed and strengthened from all the support I've gotten in light of my diagnosis. It's been a little under a week since I found out that I have a brain tumor. I began by telling my close friends and family. After personally telling my closest friends and relatives, I announced my diagnosis on here and on Facebook yesterday.  I expected some sort of response, relatives and old friends posting well wishes and prayers, but I didn't expect the response I got. I was immediately showered with love and support from my friends, family, old classmates, acquaintances, and people who hardly know me.  Aunts and uncles and cousins started calling and offering helping hands to my parents. My sisters friends started reaching out to me and sending me balloons and treats. And best of all, one of my best friends drove 5 hours and organized a group of our friends to come visit me. With my limited mobility and the business of all my friends this summer, most ...

Okay. I have bones to pick.  I love my doctors. I have many really wonderful doctors (because I've been through enough to find the good ones). I have two cardiologists working as a team from separate offices since I'm at school during the year and here over the summer. I have a whole neurology office working diligently for me. My primary physicians at school and at home are great. And soon I will have my team at Johns Hopkins coming up with my treatment plan. All of them are really great and helpful.  But here's the thing. Everything is slowed down by this horrible game of phone tag that I play with everyone!  "She's out of the office today, can I take a message?" "Hi, this is Dr. ****, I'm calling for Victoria Venable. Give me a call back at 301 *** ****." "We need to have you come in for {insert test or lab work}, but the scheduler is out for lunch, can we call you back?" Guys, I'm in a wheelchair. I won't win any ...

After my first MRI (the one of my brain and focus and contrast on the pituitary gland), my neurologist called me in for a follow up appointment. Most of my tests weren't finished and lab results hadn't come back so we knew that this meant they saw something on the first MRI so I was prepared to receive a diagnosis or a new lead. A couple days ago, I was diagnosed with a pituitary macroadenoma. This is a tumor on the pituitary gland. More times than not, this type of tumor is benign. However, the size of my tumor, 8 x 9.6 x 12 mm, indicates that it is invasive and is affecting the function of my pituitary gland. It is also encroaching upon the base of the central optic chiasm and cavernous sinus. The enlargement of the pituitary gland and its proximity to the optic nerves is the cause of my vision spots and decreased peripheral vision. Because the pituitary gland regulates hormones, the tumor has affected my digestive system, as serotonin contributes to digestion. The pituit...

Today I noticed something. I went from never even carrying a purse and only really carrying my wallet, phone and keys to dragging around a huge bag of junk. In addition to the medicine I take whenever I eat, I have added salt supplements and medicine for my BP. So I have to carry that everywhere. I also have to monitor my BP regularly, especially when I'm feeling symptoms, so I have to take my BP cuff too. Since I'm still on my Holter monitor, I have that strapped to my chest and the battery pack in my bag or around my neck. And then I need my water and gatorade to stay hydrated and to keep my sodium levels high. And since I really only go out for doctors' appointments, I carry a book every where too. I also carry around the binder of referrals, insurance info, blood test info, finished labs, etc. I've also found that knitting has been helping my vertigo so I take that places. I've gone from a pretty chill 20 year old girl to a high maintenance, old la...

I have news!  I have decided to launch a Zazzle store with products about Lyme Disease Awareness, research, funding, etc, as well as products that feature themes and images from this blog.  I've designed an image for this blog that will serve as a logo and be featured on several items available on the store site.  My goal is to raise money for Lyme research, awareness, and treatment for patients. I'm not personally at the point where I will be receiving treatment so until then the funds will go to the International Lyme and Associated Disease Society.  If you get the chance, check out the store! And if you have suggestions or requests for products, let me know and I'd be happy to design them.  http://www.zazzle.com/tori_lyme_warriors*

Thanks to a friend of my mom's (Thank you, Kathy!), I have found a wheelchair. Apparently there is this really cool organization, Federated Charities' Medical Equipment Loan Closet, that loans medical supplies/equipment such as wheelchairs, crutches, etc. for 60 days at no cost to the patient. It was really easy and accessible and it was available the day after we called. So I wanted to give a shout out to awesome charities like this that help out people in need in ways that often don't occur to us on a regular basis.  We all know about shelters and kitchens that help out the less fortunate but places like this aren't always advertised or well known. While I'm lucky enough to have two hard working and able bodied parents that do a wonderful job providing for me, I know how burdensome medical expenses can be and they add up. Even with insurances partially covering the cost of wheelchairs and crutches, fees and co-payments put more burden on those who struggle to m...

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 biggest slogans floating around about Lyme disease both in sponsored awareness campaigns and in patient testimony is "Lyme doesn't discriminate."  We can see this in the demographics of the spread of Lyme disease. When talking about Lyme, people focus on the Northeast regions of America, where Lyme was first discovered. People worry about kids, who spend a lot of time playing outside. They often warn people who live in areas with a lot of woods. But the truth is, when we really look at the demographics of Lyme disease we see that as it becomes a more and more prevalent epidemic, it really truly doesn't discriminate.  While we see a higher prevalence of Lyme in North America, Lyme has been reported on every continent except Antarctica.  We are seeing the Lyme epidemic arise all over Europe and Asia with increasing speed and concern. Clinics and specialities focusing on Lyme disease and tick borne diseases are popping up in Germany and Australia a...

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...

So I'm not even sure if this is beneficial to anyone ever but I like graphs. So I made some graphs.  I started having my syncope episodes in mid March. I didn't really know what was happening or that it would turn into all this so I didn't start recording them effectively until April.  Syncope is temporary loss of consciousness and posture, also known as fainting or passing out. When I pass out I usually feel dizzy for a second, the room spins, and then my vision blacks out. Most of the time I am out for about 5-10 seconds, but there have been times when I have been out for minutes at a time. My syncope episodes occur when I'm changing positions-walking up stairs, standing from sitting, getting up in the morning-and can occur several times a day. They don't care if I have a trip to the beach planned, or if I'm in public, or if I am in class, or if I really just have to get out of bed once today to go to the bathroom. There are days when I barely feel dizzy a...

Okay, so I have another big upside to the fact that the Lyme community is huge. With lymies ranging from all ages and demographics, you have a huge range of friends and in addition to being sick and tired and weak and everything, they are the sassiest people ever.  Here is a collection of memes I've found on blogs and forums from other lymies.  For when I am tired of being told that I don't look sick...   ...or for when I can't handle another doctor in denial...  ...so much denial...                                                              ...or when it is all just too overwhelming...   ...and treatment seems so unattainable...   ...and so costly... ...and I just end up terrified of the tick invested world...     ...but w...

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 ...

I went to my primary care provider for the first time since the episodes started today. When the episodes started I was at school so I was using the health center's practitioner as my primary physician. I told my doctor the same story I have said about a million times: when it started, how often it happens, what it feels like, what medications I have tried, what tests I have done and so forth. Then came the question I knew wouldn't go well. Luckily, my mom took it this time. "During all of our research we are seeing an increasingly obvious overlap of her symptoms--GI, IBS, syncope, vertigo--with Chronic Lyme disease. She was diagnosed as a kid so...what can we do to investigate this?" Now to clarify, I really do like this doctor. I have had her for a couple years and she has really helped me with a lot of my GI symptoms. But, all we have ever done is manage the symptoms without really investigating a cause beyond Chrohns or Celiacs. BUT! Here it was. Her respo...

I fainted yesterday and my sister, Ally, came running into my room to check on me. This was the conversation that followed.  Ally:  Me: I fell over. Ally: Me: I didn't do it on purpose.  This is what happens when a Potterhead has severe syncope.