Friday, January 30, 2009

My Brain

So the big circle thing is a cyst in the middle of my brain. A little terrifying, right?
The good news is that it's benign. The bad news is that it has to come out at some point. The doctor assured me that my brain won't "explode" before the wedding, and he's put me on some new meds to control the symptoms. Cross your fingers.

Wednesday, January 28, 2009

Thursday, January 22, 2009


Ugh, my head itches like crazy. I spent an hour lying on a table with a woman attaching wires to my head, which was fairly surreal. First, she marked all these spots on my head with a marker. Then she had to scrub every spot with alcohol and some kind of really cold prep scrub. Each node was attached with glue, then bundled up in a little white skull cap. She wrapped all the wires into a "tail" and attached them to my portable monitor. Very strange.

David's going to take some pictures later - not my best look!

Wednesday, January 21, 2009

Brain Stuff

Tomorrow is my ambulatory EEG, which means the neurologist is going to attach a bunch of wires to my head. I get to wear a recording device attached to my waist for 24 hours to record all of my brain activity.

I'm in denial about the entire neurology issue. They found a cyst in my brain in Hilton Head, but no one ever followed up on it or told me anything else about it. I just figured it wasn't important. Once I saw the immunologist here, he quickly realized that a fair amount of my symptoms were neurological in nature and sent me for a consult.

The neurologist discovered that I have limited sensation and reflexes on my left side, which wasn't a huge surprise. I've had numbness and tingling in my left arm for a few years now, and the headaches are all on the left side. David was very entertained by one of the doctor's tests - he had me stand up with my feet together and close my eyes. I promptly fell over. Whoops.

The MRI, MRA, and contrast dye imaging showed that I have a 2cm (like a gumball) cyst on my pineal gland, at the base of my brain stem. These can be asymptomatic, but mine is 4 times the size of a "normal" cyst. That, combined with my other symptoms, means a consult with the neurosurgeon.

I'll know more after the EEG tomorrow, but it's such an awful waiting game. I'm supposed to go on my honeymoon in 5 weeks! Am I having brain surgery? I have no idea. Even if they want to operate, it may not fix everything - not to mention the assorted risks. I desperately want my life back, so it's an incredibly difficult choice.

I'll post pictures of "Robo-Jen", covered in wires and sensors.

The Magical Powers of House

Embarrassing admission - before all of this mess started, I honestly thought that there was a medical test for everything. I go to 3 doctors regularly, the knee doctor, the dermatologist, and the ob/gyn. The knee doctor is so easy - I have something wrong with my knee, he x-rays it, injects cartilage, operates, done. (Plus, my orthopedic surgeon is really cute and hugs me when I visit him). There are no ambiguities. Same thing with the dermatologist. I go once a year, she checks my freckles, and cuts them off if they look bad. The ob/gyn is like the dentist - not a lot of fun, but necessary and painless.
I don't have a GP and haven't had a physical since college. I avoid going to the doctor unless something is bleeding or broken. Or I'm on fire.

Which is why it was so hard for me to hear that the doctors couldn't immediately diagnose me. I was convinced that meant it was all in my head. I drove David nuts, telling him constantly that I wasn't sick, that I should just snap out of it, that the doctors thought I was a wuss. (Of course, I was saying this from a hospital bed with IVs and tubes everywhere, so my judgement might have been off).

But then I discovered House! Did you know there isn't actually one magic blood test for cancer?? Or that doctors sometimes have to do a bunch of tests to piece everything together? Or that some conditions are diagnoses of exclusion? Seriously, it has totally changed the way I think about healthcare. Just because some douchebag ER doctor told me I was "anxious" doesn't mean he was right. I simply needed to find the appropriate specialist to do the right blood tests and the correct brain scans. And let me tell you, my current doctors do not think I'm a wuss or that I should "snap out of it". What a relief!
That show has made dealing with all this diagnostic hell almost manageable. Plus Hugh Laurie is hot.

Tuesday, January 20, 2009


Throughout all of this, David has been my rock. It sounds trite or cliche, but I don't know what I would do without him. His strength, his irreverent sense of humor, his ability to make me laugh in the darkest of moments, his intelligence, his persistence - the list goes on and on. This is a man who carries me up the stairs when I collapse, but who is completely unafraid to call me on my bullshit. His family has welcomed me with open arms, and I feel so blessed to have all of them in my life.

David was working like mad and then driving every weekend to Bluffton to see me at my parents' house. He didn't have a minute for himself, and he rarely complained. He also spent countless hours on the phone tracking down doctors and second opinions and paperwork. (I'll write a separate post about this, but the health insurance system in our country is completely broken).

Our story is very unorthodox - best friends for 12 years, he was in my first wedding. Our first date was in May, we were engaged in September, and this all happened in October. Not ideal for a newly engaged couple, but it certainly means that we have a very good idea of who we are and how we each react to stressful situations.

Don't get me wrong - David is no saint. In fact, he's generally a bit of an cranky misanthrope. But he's my misanthrope and I adore him.


God, I had forgotten what a ridiculous saga this all was. I'll make the rest brief. Keep in mind, this all happened over 2 very, very long months. Don't ever get sick in the fall, because Thanksgiving and Christmas really slow the diagnostic process down.

I had a mini-seizure a couple of days after they released me from the hospital, which put me back in the ER. They recommended I see an infectious disease specialist, thinking perhaps I had some underlying nasty virus or parasite. Dr. Avramovski - love him - took an insane amount of blood from me and tested me for every bug out there. All negative, except something called the ANA test. Again, if you watch House, you're familiar with this test - usually for lupus. It tests for anti-nuclear antibodies, which basically means your body is attacking itself. I was perversely thrilled! Finally, someone found the root cause - an autoimmune disease.

That brings us to Charlotte and the immunologist here. After a gazillion blood tests, he diagnosed me with mixed connective tissue disease and fibromyalgia. MTCD is an autoimmune disease in which your body attacks its own healthy tissue. I'm on steroids now, which will help manage the syptoms. We'll continue to monitor and tinker with medication, but I'll have to live with it for the rest of my life. The worst part is that it affects your ability to have a healthy pregnancy.

I still think that fibromyalgia is a fake disease for wimpy people. This really pisses off my doctor and David when I say this.

I haven't gotten to the neurological stuff yet. That's a post all on its own. (Mostly because I'm in complete denial)


About a week after I got out of the hospital, I started to get worse. My parents left for vacation, and Mikey was in charge of making me drink my godawful Ensures. Have you ever had one of those things?? They're designed to cram the maximum amount of nutrition and fat in one small "chocolate" drink. I couldn't eat real food, so the doctor told me I had to have at least 5 Ensures per day. I just got worse and worse. I couldn't walk, couldn't get out of bed, couldn't even get 3 Ensures down. So...the doctor put me back in the hospital.

Mikey wins the brother of year award. He's the one who took me to the hospital and took care of me until Mom and Dad could get back in town.

I started to get a little scared at this point. I was so, so sick and in so much pain. Plus, I was having these convulsions and no one could figure it out. Everyone at the Hilton Head hospital was very nice (if Emory was an Econolodge, the Hilton Head hospital was the Ritz-Carlton). I had every test known to man - if you watch House, that was pretty much my week. Finally, the doctors found a cyst in my brain (which they promptly dismissed) and a bacterial infection in my blood. After a couple of days of hardcore IV antibiotics, they released me.

Yep, returning to school wasn't looking too good.

Inauguration Day

This is one of those days where I am so grateful to be stuck at home. I plan on watching every single minute of the inaugural coverage. It is simply overwhelming - the joy, the hope, the anticipation of change. Can you imagine the different situation had McCain and Palin been elected? That horrid woman may run again, but we have at least 4 years of intelligence and competence ahead of us. I am in awe of Barack and Michelle, and I believe they are just what this country needs.

What an amazing day!

Also, Charlotte got about 3-4 inches of snow last night, which just adds to the special feel of the day. It's still snowing, which is a real treat.

Monday, January 19, 2009

The School Dilemma

I honestly thought that I would be all better and back at school within a week of getting out of the hospital. David drove me to my parents' house for my 30th birthday party (I celebrated with plain bread while everyone else drank wine and ate steak. Boo.). I was a little shaky, but optimistic - actually getting a little stressed about all the homework I had due.

There was a bit of conflict going on in my mind. Here's the thing - I didn't really like business school, per se. I loved classes and I loved the discussions and the professors, but I didn't like the subjects. I enjoyed the communications and strategy classes, but couldn't stand economics or statistics.

The stereotype of a business school student is arrogant, money-obsessed, Republican, white male, etc. I'm not going to lie - there are definitely some of those, mostly in the full-time program. (I had fun taunting them during the election.) But as a whole, I met incredible people at school. Goizueta attracts a different type of person, and really focuses on core values instead of status. I have no doubt that I wouldn't have lasted a day at one of the cutthroat "top" schools. The competitive environment made me react like some kind of rebellious teenager. The more everyone stressed about grades and jobs, the lazier and less concerned I acted. Counterproductive, I know. Why bust my ass to get a Distinction when I could watch bad TV, never open my text books, and get a High Pass instead?

I also started telling people that I was in graduate school for business communications and psychology, in order to avoid saying that I was a business school student. I was oddly embarrassed by my choice to go to Goizueta, especially since I was becoming more and more certain that I didn't want to be in traditional "business". Of course, I had no idea what I wanted to do instead (still don't). All I know is finance.

I felt like I just had to finish and get it over with so I could have the letters on my resume.


Well, here I go. After 3 months of being housebound, I've finally decided to communicate with the outside world in a more effective manner. Finley the golden retriever is an excellent companion, but a crappy conversationalist. My brain is turning to mush watching too much daytime TV, and I can't read because of my headaches. So...I thought I'd share my story.

It all started this summer. I was exhausted all the time. I couldn't make it through the day without a nap, and I was sleeping 9-10 hours a night. Since I was working full-time and going to business school at night, I figured it was just stress. Then I started to feel like I had to flu every 3 weeks or so. I would be sick as a dog on the sofa for 2 days, then recover magically. I hate going to doctors (always convinced they're just going to tell me I'm being a wuss), so I ignored it. The headaches started in June. It was as if an icepick was stabbing me behind my left ear through my left eye, and would last about 30 seconds. Agonizing and breathtakingly painful - I'd be doubled over. Now, I've always had headaches, but these were completely unlike anything I'd ever experienced. I even told David about them.

School started in September, and I spent most of my time sleeping, studying, or in class. Actually, I spent most of my time sleeping or napping, nicely interspersed with horrible headaches. One Friday in October, I woke up with severe back pain. By the next day, I couldn't stand up straight and had stabbing abdominal pains. David convinced me to go to the urgent care, who drew blood and sent me home. I was angry - I hate the doctor and I hate nebulous health issues. The clinic called the next day and said I had to come back ASAP. Next thing I knew, I was in the back of an ambulance headed for Emory hospital. I was trying to call the office and my professors while the EMT was putting in an IV - complete denial.

I spent a week at Emory Hospital, which I don't recommend. It was surreal being so close to business school, yet being stuck in a hospital bed. I had every orifice poked and prodded - let me tell you, nothing brings you closer in a relationship than a colonoscopy and a GI bleed.

They released me with some painkillers, but no diagnosis.