Last month I had a scare. My neurologist insisted that it was a very strong possibility that I had a tumor in my brain. It took 2 weeks from the moment he wrote the words - "diagnosis: brain tumor" on a prescription pad to give to the MRI tech, until a Friday evening 2 weeks later, when I received the voicemail from my doctor that my scan was clear. I didn't quite process the news until the next day. I was getting prepared to take Devan to the library (with her brand new library card) and sort out my own library fees so I could reinstate my own library card that I sat down on the couch and just cried from the stress and the relief of it all. Because not everyone is so lucky. I know this. I have watched someone, not a close someone, but someone i interact with frequently on a messageboard go through the diagnosis and the removal of 90% of a brain tumor. I was, for two weeks, paralyzed with fear. It sounds dramatic, yes. But in my mind, all I could imagine was not being able to find words, form ideas, convey my feelings, my love for my girls and for Jon, without lots of time and therapy. If I were lucky. I cried for a long time, and lots of other fears and worries and negative feelings poured out of me and for a few hours I was bogged down in it all, and still wondering "why does my head feel like this all the time?"
Two weeks ago I found out why! I have a condition called Idiopathic Intracranial Hypertension. It's also known as Pseudotumor Cerebri. It acts exactly the same way a brain tumor acts, putting pressure on your brain, triggering severe migraines, nausea, blurred vision, tinnitus, constant head pain etc.
I am on a medication to control the fluid levels in my brain right now, but if I miss a dose, which I'm likely to do, because I'm quite forgetful (and also very wary of swallowing pills) the pain comes back within a few hours. It's quite painful and I don't wish it on anyone, but I'd take it ANY day over a brain tumor. If this medicine doesn't start relieving the pain in a more permanent way (like, i still have blurred vision, especially early in the morning, and that's when my head hurts the most) I will probably require frequent lumbar punctures (spinal taps)to drain excess spinal fluid or have a shunt inserted - because even though this is not as serious as a brain tumor, it can cause permanent vision loss (read: blindness.) So it's no joke.
I have a few prescriptions for pain medications, but they really don't help unless I take them around the clock, pain or no pain, and I cannot stand the feeling of always floating around in a vicodin/percocet/ultram haze. It's not how I wish to live the rest of my life.
On to more pleasant news. Because of my medication - I can no longer drink SODA! My one addiction that I've battled since high school is carbonated beverages. Now, when I drink them, it tastes like ...well, when you eat something very spicy and your cheeks and tongue burn. not a good burn, a painful burn. So I've been drinking water and unsweetened cranberry juice. Now's as good a time as any to try to become healthier. Perhaps losing a chunk of the excess weight I'm carrying around will help lessen the symptoms of the IIH. That might be wishful thinking though.
As far as the rest of my life: My greatest joys lately are coming from my library time with Devan, since it's just she and I spending time looking at books (both of us are mad about reading, so this is a great thing to share. we've been going every saturday afternoon and I feel HIGH from the happiness of spending one on one time with her.)
Watching Wrenna's personality develop, seeing her become a little person, instead of this inert baby. She's not quite crawling yet, but she gets around and gets into things (today she spilled a box of industrial staples all over the floor) and I absolutely love to curl up with her in my arms and take a little nap. She makes these little tired noises until she nuzzles close to my face and fall asleep. It's absolutely the best thing I can think of. She's almost 10 months old - it's a double edged sword. I love watching her grow, but I am also like "what the hell? where did the time go?" and it terrifies me to think this might be my last baby, and it's almost over already.
Another simple pleasure is falling asleep with my head on Jon's chest, listening to him breathe. He made a promise to do ACTIVITIES with me in counseling and he seems to be really trying to keep that promise. Next week we're going to a Gogol Bordello show @ the Filmore (it's a Haiti benefit, so I'm not all bent out of shape that the tickets are pricey) and in April we're going to a taping of the Colbert Report (we've gone a few times and it's just a fun thing to do. On May 1st we're going to a Devotchka/Gogol show in Philly. He didn't have to do any of these things, isn't a Gogol or Devotchka fan, but he WANTS to, and that's the most important thing, to me.
I've been doing quite a bit of reading lately. I can't remember them all, but I read Cat's Eye by Margaret Atwood last week. I reread a Wrinkle In Time this week and I'm reading When You Reach Me by Rebecca Stead. I've started Moonlight In Odessa (sucker for stories about Ukraine) and The Kindly Ones. I started the Robber Bride by Margaret Atwood last night, but it's due back on Saturday and I don't think I've got time to finish it. Not sure if I'll renew it. I have also finished The Weight of Silence (I wasn't super into this, but I loved the author's descriptions of the environment..if that makes sense.)
I've still got to finish the books I've started, plus I also bought Normal People Don't Live Like This (short stories) and Little Bee. I'm interested in picking up The Help, Brooklyn, Tender Morsels and What is the What. (sorry, I'm too tired to look up authors names.)
Hi! I just took some xanax because I was trying to relax. I've been having some problems lately that worry me. My MRI showed NO BRAIN TUMORS so I am thankful for that. Honestly, for 2 weeks I was paralyzed with fear. And I was internalizing all of it, so I wouldn't upset anyone else. I barely moved from the couch for 2 whole weeks while I waited for the results.The internet is a terrible thing when you're having an unexplained symptom. Try typing in numbness in limbs or vibrations/electrical feeling in legs or things to that effect into google. The results are like, the worst possible diseases you can imagine :( it's probably like, a mixture of very small health issues, a pinched nerve here, a migraine aura there. but when you have the symptoms combined, it seems like a bigger issue.
Enough complaining. Wrenna is giving those awesome baby wide open mouth kisses and giggles when you kiss her. She's also got very ticklish armpits and cracks up when I'm changing her clothes. Staying focused on the positive things!
It's been a long time since I've written, mostly because I've got nothing to share with the world. My wheels are turning, as always, but (as always) I'm pulled in a million directions - creatively, emotionally, physically - so I don't really have anything new to show you.
I got an e-mail the other day from blogger about how they're not going to support blogger to website publishing (which is how I do it) so I'm not entirely sure what will become of this space. I've been keeping a blog since 2001 and I'm not ready to get rid of it completely, but I'm also not very savvy when it comes to the ftp stuff. I have no idea how to move 900+ blog posts from one place to another. I suppose I'll figure it out next week.
So just to shorten this post and catch you up on my goings on, here's a list:
Reading: The Kindly Ones by Jonathan Littell.
Knitting: chemo caps, baby hats and bibs (nothing specific)
Watching: rewatching Arrested Development over and over again.
Daydreaming about: becoming a successful illustrator and fabric/pattern designer.
Worrying about: waiting for MRI results is excruciating.
Excited about: Just bought presale tickets for the Philadelphia Devotchka/Gogol Bordello show.
Recent Baby Milestone: WMD has mastered the "wounded soldier"
My batteries died and I haven't had a chance to get more.
Soo... I mentioned a job that I sent a resume to. Well.. I had an interview on Thursday. I don't know if it went well or poorly, but I enjoyed it. haha!
I'm kind of in a bad mood right now because I found something on the internet that ruined my day.
The L Letterpress Machine
Yesterday was a fast day. Devan was only at school until 1:15, due to week-long parent teacher conferences. I wasn't feeling good all morning, so I took a nap with Wren. I felt good enough after my shower that when I picked Devan up at the bus stop, I decided to take them both shopping.
First we needed gas and I needed coffee. Oh Quick Chek, if your coffee weren't so good I'd never be able to forgive your rude employees. I'm always so torn when I find myself walking through your doors.
After coffee, tacos were necessary. Devan was hungry and I may or may not have forgotten to pack her something to eat, causing her to be the only child without something to eat at snack time. So we ate tacos (tacos and immodium for me, thanks) for lunch and headed over to Trader Joes, where I picked up PUMPKIN BUTTER and also GINGERBREAD COFFEE.
After TJ's we went to Borders, so I could feed Wrenna and Devan could nag me into buying her a book. I bought myself 2 books that I have been picking up and putting back down for a few weeks now:
Oh, those candies there, I STOLE THEM. I stuck them in the baby's stroller, meaning to buy them, but I completely forgot and didn't realize til much much later the horrible crime I'd committed. I find myself stealing lots of things lately. A package of batteries here, ibuprofen there. you know, anything that falls between the side of the shopping cart and the diaper bag. If you're expecting that I'd see what I'd done and rush back into the store to pay for said items, you're nuts. I usually discover the pilfered items after I've fastened Wrenna securely in her seat and started my car. THERE IS NO GOING BACK AT THAT POINT.
After looting Borders, I took the girls to Target, where I purchased a really awful pair of boots for myself, and an even more awful pair of boots for Devan (why are these Ugg type boots popular again??) And I got Wrenna a BUMBO CHAIR.
After this I made dinner, wound yarn into a ball, knitted and watched House, and then I finally GROOMED MY EYEBROWS (it's really annoying when you cut your bangs and remember that you haven't messed with your eyebrows in MONTHS) and then I took a shower and remembered the meteor shower. I went outside in shorts and bare feet and shivered for 45 minutes. I saw one really bright meteor and 3 little guys. It was exciting. I felt very lonely and quiet and small while i stood on my deck, which was unsettling. My stomach kept growling, so I went inside and made myself a pbj sandwich and then I went to bed.
That was my Monday. Now I need to lay down until it's time to take Devan to the bus because I only got 2 hours of sleep.
not really. but at least I remembered that I made a goal to post something every day.
I sent my resume to a job in the city today. I'm nervous but also kind of NOT NERVOUS, because deep down I wish I could stay home with my daughters forever. If I get it, I'll tell you about it.
I've been away for far too long! I decided today that I'm going to start blogging again. If not blogging, at least posting a daily picture. I've started a 365 project - taking a photo every day. Here's what I've got so far, to catch up:
it's like he's stephen colberting stephen colbert. do you know what i mean? i'm making a new blog category for Glenn Beck because he is the weirdest person ever and I'll probably be mesmerized by him until the end of time.
