Tag Archives: scarves

EEG Glue and Other Fun Times

I’ve had an awful headache since last Wednesday. That’s what the two emergency room visits were for. Well that and the uncontrollable vomiting. Sorry…TMI. I know. I’ll be more carefull.

I met with my surgeon and he looked at the CT images that the emergency room doctors ordered and said they were wrong. He said there was no indication of bleeding or scar tissue just healing brain tissue. However, to put me at ease he ordered an MRI and an EEG which I went around called an EKG for the better part of a day because I had no idea they were different. Now I have no idea what an EKG is. Something important…maybe…

The MRI went fine. It was the same MRI tech from my pre-op MRI and she recognized me even though I couldn’t see her very well and it wasn’t until she told me we had met that I remembered. In the end, she said she was no expert but she thought things looked well.

Actually, the whole reason for the tests was because my doctor thinks I’m having little seizures. It would make sense: the visions of (now they are golden retrievers), the weakness, the inability to speak a complete sentence during an “episode”, the horrible headaches which actually might be more like a seizure hangover. And here we thought normal hangovers had all the fun…

When I arrived to my EEG appointment, I was expecting to be there for only 20-60 minutes which is about the standard EEG test length according to my research. Then there was some furious whispering and I caught the words “twenty-four hour ambulatory EEG”. What does that mean? Well…I will explain. It means that those funny, looking little electrodes that they stick *painfully* on your skull and in your hair with smelly glue stay on you for an entire day not just the time that you are in the office, sitting in the uncomfortable chair reading the brochures aptly titled “What is Epilepsy?” and “How soon can you drive after your last seizure? By state”. Don’t worry, I did brush up on my seizure trivia knowledge and can now tell you that the best know seizure where the person drops to the ground and shakes uncontrollably is only one type of seizure. There are like ten or something. Maybe more.

When I left the EEG tech told me that I would look like I had a head wound for a day because she had to wrap the electrodes to protect them. The gauze was tighter than right after my surgery.  The best part was the the wires connected to a hideous fashionable little purse where the “brain” was that documented everything.

Shortly after, I ran into my surgeon who asked me if I wanted a picture with the wires and the gauze.

“Of course!”
“You’re serious?”
“Why wouldn’t I be? Someone needs to document this.”

Sorry for the picture quality. I only had my iPhone to take it with. Can you see all my wires sticking out back? The lovely graze wrap job she did came off later when I went back the the ER for the same headache. I convinced myself that the gauze was cutting off the circulation to my brain and I ripped it off like it was on fire. No one said anything. They must be used to crazy people coming in and doing even weirder things.
 L. isn’t here to help me take kick ass photos, but I tried to snap this of myself as the dog came over to kiss me. He normally doesn’t kiss me or sit by me. See, my family doesn’t like to discipline him too much. I do. Therefore he trembles in my presence, but he behaves. Yesterday he smelled my EEG machine and the gauze and actually sat on me. The cat did the same thing later. It was strange. I think animals know.

Now, I have it off for real. Although I still have chunks of smelly, hard EEG glue stuck in my hair. They recommended nail polish remover and hot oil treatments so I did that. Looks like I might need more tomorrow because I still look like I have the world’s largest dandruff chunks stuck to my scalp.

I’ll end on a happy note. Thank you to Jess from What’s the Story Morning Glory! She sent me a scarf that she made herself. That’s pretty awesome considering that we are just “blog” friends. Also, I would like to thank Heather from China to Chile! Right before my surgery, she sent me a journal and I was so preoccupied I forgot to thank her. She’s moving to Chile soon, so check out her blog.

All my blog friends have been really amazing lately. I’ve received cards and little presents from blog friends all around the world. I think that makes them “real” friends now, don’t you? Note to self: Tell L. to stop teasing me about my internet friends.

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Why I suck at “taking it easy” and photos of stuff

I’m a fast paced, impulsive person. To those of you who know me well this is no surprise and I’m sure it even comes off in this blog (hello attacking my paparazzi in Tottus), so let’s just say that recovery and all this “taking it easy” is harder than it looks. I’m not really the kind of person who can veg out easily. I like to be up and active. A normal day for me consists of very little down time mostly because I don’t know what to do with myself.

I’m wondering if half of my superhuman energy has to do with the fact that I’m still on some very potent steroids to take down the swelling in my brain. That’s the reason I’m able to exist on sleep that wouldn’t suffice for even a gerbil, and I’m breaking out and eating like a 16 year old. Oh, also I tend to be a liiiitle more angry emotional. Fortunately, I’m on a sliding scale and I’m definitely running down the steroid hill at this point soon to be off of them. The only part that concerns me about that is that my unusual energy (my doctor thinks I’m some sort of brain surgery miracle) is that I might actually be tired. Then, I might have to calm down this pace and actually rest.

Right, so I’m not out running marathons or anything. I still get a little tired walking up the stairs and around the corner, but I’m doing things that other neurosurgery patients might not be doing mere days after being discharged like: shopping at the mall, going out to restaurants, getting lost in public bathrooms, taking *large print* books out at the library, and going to the University of Minnesota Arboretum (so I sat on a bench in the shade a lot….I had a good excuse!).

It’s hard because I have so many plans now. Like. So. Many. Plans. My entire perspective on life seems to have shifted. Nothing seems impossible anymore. Nothing. All those little things that used to hold me back? Gone. Things seems clearer. Relationships are more important and my goals have an entirely new meaning. Sorry. I’m not trying to get all Hallmark card on you, but it’s true. It’s one of those things I think about when I’m busy not sleeping at night.

I’m excited because on Monday I have a doctor’s appointment with my neurosurgeon to remove my “sutures”. Bear in mind that I have hardly even looked at the back of my head. I did take a good look once and saw that I have quite the gash (a good six inches down my skull) full o’ staples and other “hardware” and it honestly made me feel a little weak. That’s why L. and my family are such saints because they have to rub me down with antibiotic ointment (I love using the word ointment….ointment…ointment…ointment!) once a day. Bleh….

I heard a rumor that I have a plate of some sort in my head now. I wonder if that means I get one of those medical cards to bypass the metal detectors at airports. *fist pump* You know the ones they give to the little old grannies who have more metal in their hips than box-spring mattress? Yes, well they are not just for old ladies anymore…

My friend M. told me the other day that I surprise people because I look so freaking healthy, but I’m pretty blind still and well, get confused in bathrooms for crying out loud. I’m sure that’s what the woman who I barreled into today thought. Or the people at Caribou Coffee who were eyeing the IV bruises on my arm like I was some sort of addict. Or the guy today who made eyes at me in Target, but I had no idea I was even looking at him until he was right in front of me. Seriously. I have no idea how long I sat there stupidly gaping at him because I couldn’t even see him.

And now before I bore you with more possibly steroid induced ramblingd, some photos from the Arboretum today. I managed to get a little sunburned (another possible thing to check off of my post-surgery to-do list).

Okay… and I won’t even take credit for the photos. Add that to the long list of reasons why I will miss L. when he leaves: he takes great pictures.
I got so many flowers while I was in the hospital but most of them did not end up coming home with me because my cat has a plant addiction problem. Yeh, he eats them and then vomits in a corner. It’s one of his more attractive qualities. So, being around color was amazing. Oh and I can see the flowers. I Love hibiscus. I have no idea why. Like I said, I did a lot of sitting on benches in the shade, but L. managed to snap this of me in motion. I have to keep something on my head at all times just as much for my scar’s sake as for not scaring the rest of the public. That hat was sooo hot, but I am wearing the earrings that I told Deidre from Decoy Betty about when she sent me a darling red scarf all the way from AUSTRALIA! I love the blue of this one. It looks perfect against the reddish pink (that is reddish pink, right?) of these. Oh and I don’t even remember what these are called (brain tumor moment? You decide).We saw a timid little cardinal. L. followed him for a few feet because we told him that cardinals are usually very shy and this one seemed to want his picture taken. There was a pond with tadpoles and baby frogs. What is cuter than a baby frog? All green, and tiny, and slimly. (Yes, I was one of those children). In the same fountain a group of tadpoles had started masticating the body of their tiny tadpole brother. No picture for that. Apparently that’s how frog families work. Fun. I love this last one with the bee. I’m terribly allergic to bees so I was nowhere near this flower, but what else can say summer besides an image like that? There I hope you have enjoyed my rantings and Arboretum slide show. I think it’s probably a good idea if I retire now to stare at the ceiling try to sleep. Good night! Or Good Morning if you happen to be waking up in Australia…

Ready!

Two weeks ago, this wait seemed endless. It was like the date would never arrive. Of course, at the time, I didn’t want it to.

Now, I can finally say that I’m ready.

I’m still scared. I’m still a little nervous. That’s probably why it’s almost 1:00 AM and I’m not sleepy at all.

I had a really great weekend with my family, some friends, L., and today my grandpa arrived from Wisconsin to be here for my surgery. Today (or yesterday? this not sleeping is weird), we had a tiny barbeque and made some Chilean things like pebre which my family loved.

Since it’s after midnight the day before my surgery, I can’t eat or drink anything. I can only take a sip of water (if absolutely necessary) to swallow a pill.

They gave me some huge anti-microbial wipes to use to clean my whole body, and honestly, the only thing that is even “bothering” me right now is the fact that my skin is itching like HELL from those darn things. I mean, seriously, they should come with a warning. (Oh wait, they probably did. I never have been much for reading directions…)

I have to check in to the hospital at 5:00AM. They are going to map out my brain with an MRI at 6:00 and a CT scan at 6:40. After that, I get pumped full of intravenous antihistamines because patients with mastocytosis tend to react badly to general anesthesia and they aren’t going to take any risks with me.

Then, granted all goes as planned, I will be wheeled in to the OR to started surgery at 8:00 AM.

When I first talked to the doctor, he said the operation could take 8-10 hours. We then learned that he has a case scheduled later in the day, so I hope that means he has decided my surgery is less complicated than he originally stated.

After surgery, I will spend about two days in the ICU and then two days in a normal room during which time they will be testing my cognitive abilities and monitoring me for problems that could result because of the surgery.

I will try to update (or at least have someone update) soon, but I don’t know when.

I just want to say, I’m ready. I even spent about 20 minutes learning how to tie various headscarves because I still don’t know the extent of the damage to my hair. I think I have some cute/creative options to keep me satisfied for a while.

Please pray for me/send me good vibes/think of me:)

Who knew planning for surgery was a full-time job?

My life has taken a bullet train to crazy lately. I never knew that planning for surgery could be so time consuming. I started by making a list that took up an entire sheet of those cute note pages that we have around the house for grocery lists and such. I have since managed to cross off all but one item on that list!

In the past week, I have:

1) Gone on medical leave from my classes (with well wishes from my advisor, and the administration at my university).

2) Set up all my pre-op appointments and asked most of my urgent pre-op questions.

3) Changed my ticket. (Continental was surprisingly easy to deal with. Score!) I can now return to Chile any time in the next year.

4) L. is scheduled to arrive on the 3rd (Please no disruptions from the hurricane! Thank you.)

5.) I paid my credit cards and wrote down all my passwords in a *very* secret place because I’m afraid I’ll forget to pay them later. Would that be so bad, really?

6) Oh and I got a haircut. My surgeon says that I’ll be the proud new owner of a small, crescent-moon shape in the back of my head and that he will “minimize” the effect on my hair, but I decided to chop it off anyway. I don’t want to always be combing my hair and miss a chunk. A friend of mine from high-school had brain surgery about a year ago and she recommended a Rihanna-style cut and that’s what I tried to do, except I have finer hair than her and my bangs weren’t long enough in the front. Hair grows, though. (If I look pale in the photo, I blame it on these potent steroids they have me on.)

The next one I snapped in the mirror. Can you see where the right side of my brain totally forgot to zoom in and took a photo of the wall. Haha… brain joke. There will probably be more of those to come. Just warning you.

8) I’ve started a small scarf collection to hide my “crescent-moon shape” that will soon appear on the back of my head.

9) I’m getting organized! I can’t really take credit for the idea, but my mom decided that we should have a catch all folder with all my pertinent medical information and other things like pens, highlighters, those tabby things that the real organizational freaks get into and such. We are worried that because I’m a high-risk patient (Thanks mastocytosis), we might need to produce information quickly (personal experience has taught me that most doctors and nurses could use a little help in the rare disease category of Jeopardy) and we need to have it in front of us. Now, I’m just ready to get the thing out of my head. I just want it gone. Out. I want to be a normal person again. I want my life back.

One day at a time though, right?