Woohoo...?

More than four weeks with no headaches...I'm keeping my fingers crossed that my upcoming trip to Canada will be a celebration of 5 weeks with no headaches. It's just the little things...

More Adventures...

A certain gentleman who exercises regularly, admits to being a pothead, and notes that it's important that his prospective dates have good hygeine. Then he notes that he likes golden showers. Kinda flies in the face of the hygiene thing, no?

Adventures in Dating Websites and Other Stuff

Bridget had baby Liadan a month ago now. I've been lucky enough to spend quite a bit of time with them, and Liadan is just beautiful. Bridget seems to be doing quite well. I know she'll be a great mom :)

I got a fantastic compliment from a gentleman from Toronto on okcupid.com. "Curling makes you an honorary Canadian." *sigh* Does it get any better than that? I need to move to Canada.

And the creepiest thing I saw on the same website (different profile):
"The most private thing I'm willing to admit:
babies are so cute, the yare tiny and adorable and i just wanna hold them. im fixed tho so no worries there."
Oh, there's so much wrong with this...

And finally, 3 weeks with no headaches and then they came back Wednesday after work, and just in time for my interview Thursday morning. I took some naproxen Thursday morning just to take the edge off and so that I wouldn't feel like complete ass for the interview. I woke up Friday around 4 in the morning with tears streaming down my face. It took me a minute to realize it was because my head hurt so bad. Makes me wonder if something else is going on since this wasn't positional. Maybe there is a migraine component? Ugh - who can say? No headache this morning, though, so maybe this latest bout is over.

Sigh.

-Two and a half weeks with no headaches...this feels like an accomplishment that I truly have no control over, but I'll take it an run with it anyway. My appointment with the neurosurgeon went well, as the MRI looked better this time around. My brain's not nearly as saggy and things seem to be healing. I get to go back in May.

-Work is getting to me. I'm trying to keep plugging along, but my motivation is at an all-time low, and I think it's pathetic that I find going to the plant an accomplishment. I need to buckle down and focus on what I want to do next - either commit to making this work, or find another job, or figure out if I want to go back to school. I feel like an office job will eventually make me insane, but that could be because I haven't had one for so long. Maybe there would just be an adjustment period. Or maybe it's time to find a career that would make me feel better about how I'm spending my time...something more altruistic...

-I sometimes watch Sandra Lee Semi-Homemade so that I feel better about my cooking. Her use of cooking spray is horrifying to me. I'm watching her make catfish, and she actually breaded the catfish and then sprayed the top with cooking spray. I don't think that was necessary.

And the Streak Has Ended...

It was a good run...over a week with no headaches. I felt one coming on the other night, but was able to stave it off. Not so much yesterday, as waking up with a headache doesn't bode well for the rest of the day. I'm sure that crying a bit at the going-away party didn't help (I still blame Jim - I knew I wouldn't be able to contain my tears if I saw his). But I had sincerely hoped that a good night's worth of sleep, which I actually got, would do the trick. No such luck, as I woke up again today feeling like I should rip off the top of my skull and squeezing my right eye shut. It just might be time to look for a second opinion...and maybe get a little more sleep.

When I had dinner with Jaimie and Haiden, we each told our rose and our thorn of the day, and I think I need to remember this habit when talking about my headaches. So, my thorn is my headache. My rose is still managing to laugh despite all of this.

Still Excited...

Six days in a row without a headache seems amazing. I could feel one coming on last night, but after lying down for a bit and relaxing for the rest of the evening, the feeling went away. I sincerely hope this is the end of it...

In more entertaining news, I looked at the EOBs on line to see how much had been billed to my insurance thus far (and no, not everything has been processed yet...). The total so far: $25,707. To think about what it costs for people with chronic medical problems is staggering. I, thus far, have been one to fly under the radar medically - I would have an occasional illness or a mole removed or what have you, but the cost was never anywhere near what my premiums were. The health insurance companies made a significant amount of money off of me for years, but I seem to be playing a bit of catch-up.

On to more fun things - I'm getting excited for Christmas. I'm not thrilled about my job prospects right now, but I'm sure something will work out as far as that goes. Fa la la la la...

Excited...

I'm trying not to get too excited, but it's after midnight, which makes this three days in a row with no headaches. There have been very quick, sharp, fleeting pains occasionally (usually when I sneeze), but since it goes away immediately, I don't count them. Here's hoping this trend continues...

The Kid

Justin, my nephew, also the best thing my brother has ever done for me, is all kinds of fantastic. I was grateful to spend time with him on Thanksgiving this year. We snuggled on the couch, watching the end of Rocky V (by far, the worst one...). Have I mentioned I'm ecstatic that he still likes to snuggle at the age of almost 11? Anyway, the movie panned to the infamous steps in Philly, which prompted Justin to say, "Oh, Auntie Carrie! I know what I keep forgetting to tell you! You know that book you got me at the Liberty Bell Museum when you went to Philadelphia last year? I read it and I really liked it." Could my heart melt any more? It was a children's history book about spies, and I knew he had been enjoying history and social studies in school. I thought it was a bit of a leap at the time, but figured it was worth a shot. It made me feel good that he read the book, of course. But that he remembered it was from Philly, and related it to seeing another representation of Philly made me realize how much he's growing up. Also great was the chat about what he wanted for Christmas. After rattling off a couple of Wii games, he mentioned he also wanted a few books. I called dibs on those - I figure I will keep feeding the book-loving side of him as long as I can...

Scoreboard

Today: No headache
I think it's day 4 or 5 since early October that I haven't had one. I look at this as significant progress given where I was. The trip to Mexico saw no significant changes to my headache pattern, which was great. I could've gone without the food poisoning, though. But I digress...

The scoreboard for this round of illness:
ER: 2
Family doctor: 2
ENT: 1
Dr. Neurosurgeon: 2
CT Scans: 2
X-ray: 1
MRI: 1 head, 3 spine
Blood word: 2 rounds
Headaches: countless
Support: immeasurable
Amount billed to insurance: tens of thousands...thankful for insurance...

Things are looking up on the health front. I'm anxious to try swimming laps soon, and look forward to seeing the results of the next MRI. Here's hoping for more progress...

Dr. Neurosurgeon Part Deux

Tuesday saw another visit with Dr. Neurosurgeon. I got in much quicker this time, and the appointment didn't last long at all. So, the CT was normal (for the most part). I get to resume normal activities as tolerated, and have a repeat MRI and another appointment in February.

It all sounds great, and on several levels it is. I have had, officially, two headache-free days. But only two. And the headache I have right now, while not too intense, is aggravating to say the least. And to still have the spasm headaches yesterday made want to cry...not so much in pain, but in sheer and utter frustration. And, as always, crying makes it worse. I can feel my pulse in my brain.

Dr. Neurosurgeon gave me the okay to fly, and Mexico should be relaxing. I've been trying not to think about what might happen. I guess time will tell...

Not My Fault...

I meandered over to the hospital again today for yet another CT scan (thin slices this time! And the head, orbits and sinuses!) ordered by Dr. Neurosurgeon. So here's the sequence of events:
-Receive order at Dr. Neurosurgeon's office with instructions to schedule the CT appointment then contact the office for them to obtain the insurance approval. Check - received and understood the order!
-Schedule the appointment and cancel the outstanding MRI for my spine (figured I'd keep that one in case Dr. Neurosurgeon ordered another MRI of something...). Give the scheduling office all sorts of information, including the reason for the CT scan (note: foreshadowing). Check!
-Contact the office regarding the insurance approval. Check!
-Make sure the approval is granted - spoke with Dr. Neurosurgeon's office. Check!
-Show up a half hour early for said scan. Check!
-Sit down and talk with the registration employee. Frick!

So here's how the conversation goes:
Me: Good morning (as I hand her my doctor's order for the test, driver's license and insurance card without her asking because I'm that good of a patient). How are you?
Mean Lady: Good morning. You're here for a CT scan of your head?
Me: Yes, ma'am. And orbits and sinuses.
Mean Lady: Okay. And here's your insurance card and your license? And your doctor's order?
Me: Yes.
Mean Lady: (tapping away on her keyboard) And the reason for the CT scan?
Me: I believe it's on the order - they are looking for a CSF leak (falsely assuming her knowledge base).
Mean Lady: Well I don't know what that even means.
Me: They are looking for a leak of spinal fluid.
Mean Lady: (grabs giant book of medical codes and starts flipping furiously) *Mutter Mutter Mutter*
Me: I'm not sure how that's organized, but some search phrases could be cerebral spinal fluid or spinal fluid. The other diagnosis is spontaneous intracranial hypotension.
Mean Lady: Are you sure it's not a leak due to a lumbar puncture?
Me: Yes, I'm sure it's not.
Mean Lady: Well there's no other reason for a spinal fluid leak. I can't believe they didn't write down a number for this reason. See? (thrusting the book at me) There's leaks, and nothing for spinal fluid except for related to a lumbar puncture. What do you see?
Me: *bewildered and furious* Well, my spinal fluid is leaking. Spontaneously. And I haven't had a lumbar puncture. And maybe I'm a little off base here, but I'm guessing if you code it as related to a lumbar puncture, my insurance may not cover it as they haven't paid for me to have a lumbar puncture. And quite frankly, it's not my job to code this for you. I think it's a bit insensitive of you to imply that I have something to do with this. I informed your scheduling department of the reason for the CT when I called in.
Mean Lady: I just get frustrated with the doctor's offices.
Me: Well I'm sorry to hear that. Perhaps you could call the referring physician's office for the code. Or maybe you should focus on bringing this issue to the attention of your superiors who can fix your own scheduling and billing processes, as I gave them the information already, and it's fairly redundant to do so multiple times. I think that might be more productive and provide better quality customer service instead of being inconsiderate to patients who are leaking spinal fluid.
Mean Lady: You're right. I'm sorry. (tapping away on the keyboard again) Here's your paperwork. Please take all of this to the X-Ray desk and they will get you right in.
Me: Thank you.

Ugh. I didn't yell. I didn't swear. I didn't slap her upside the head like I wanted to. But I also wasn't going to sit there and let her be cranky to me. I like to think I took one for the team (the team being anyone who goes to that hospital for x-rays or other outpatient services...), and that Mean Lady will realize that maybe she should be nice to patients, but I'm not that much of an optimist, and really I think I maybe ruined her day just a bit like she almost ruined mine.

So, the saga continues. Up next: another trip to see Dr. Neurosurgeon!

Frick.

Squeezing right eye shut. Headache beginning. So unfair...

Pure Joy!

Pure joy was having an entire day without a single headache. Not a twinge, not noticing squeezing my right eye shut, not a spasm - nothing. To make matters even better, I was without a good night's sleep, and had an early morning at Justin's swim meet. That kid is just fantastic - every time he hugs me I feel like my heart grows just a bit bigger.

And I managed to make it down to Hamtramck for dinner...we made it to the bakery early enough for me to get my angel wings. The pierogies weren't nearly as good as what Baba used to make, but those along with the potato pancakes and giant chalice of Polish beer made it feel like the holiday season.

Well, Hello Dr. Neurosurgeon...

And yesterday was the first of at least three impending trips to the neurosurgeon. Mom & Miss joined in the fun, which was good. Always good to have mom and a Ph.D. in comparative medicine at the doctor's visit.

Verdict? Spontaneous Intracranial Hypotension. Yes, I was leaking spinal fluid. No, we're not sure why. And though I'm a fairly concrete thinker, I'll have to accept that this may not be explained. I have another CT scan coming up, with another MRI in a few months to make sure everything has healed, assuming the headaches continue to heal. For now, I'm supposed to be active but not exert myself. Yeesh - talk about walking a tightrope - will have to do the best I can.

Fortunately, the last three days have been better...down to one or two spasm headaches per day, and the dull aching headache isn't starting until evening. I laughed at lunch today...unabashadly...without thinking and without pain. I was giddy afterwards. It really is the little things in life, sometimes, that make a big difference, as cliche as that sounds.

Thoughts...

Thoughts / dawning revelations I've been having over the past few days:
-I can't believe I have to relearn how to laugh. It's hurt so much to do so, I now feel like a robot when I think something is funny because I can't express it. It's getting better (there's less pain when I laugh), but it's amazing how cruel it is to not be able to laugh...I feel like I've lost a lot of my sparkle.
-Was I really vomiting my own spinal fluid? I'm pretty sure it wasn't mucous / sinus drainage, but if it was CSF, that's just wrong.
-Never been so excited to meet a neurosurgeon.
-Ugh.
-Didn't realize anyone still read this, especially with how little / how sporadic I am with posting. I should've known... Thanks for getting in touch yesterday, Tia. It was more than good to hear your voice. I miss you and I love you.

...And Seconds...

My second (and technically third and fourth) MRI ever was on Friday. We have moved down the brain to the cervical, thoracic and lumbar regions of the spine. An hour and fifteen minutes spent in a white tube with crazy noises and a very uncomfortable position that wasn't to be altered is not something I should complain about by any stretch - I'm lucky to have access, availability and insurance. But this still sucks, and that's all there is to say. We're in search of some kind of tear in the dura that is allowing a leak of cervical spinal fluid. All I know is that there's a bunch of stuff on the initial MRI report that I wish I had no knowledge of, and I hope that whatever news I get on Tuesday is easier to handle than the diagnostic phase has been so far. I can live without panic attacks and feeling like I am slowly but surely losing my grip on reality and my sanity. I can't imagine how the author of the Permanent Headache blog has gone two years with no answers. I think that would quite literally cause me to go insane.

One-Hit Wonder

There have been a lot of firsts for me recently...first CT scan, first time on narcotics (dilaudid, vicodin, toradol), first time of not knowing to the extent that it's driving me a little crazy. I've been a caregiver so often over the years, and I don't begrudge those experiences. I've learned a lot and have been forced to deal with things that at times seemed insurmountable. I know I haven't always handled things well, or the best that I could, and I'm okay with that. Sometimes, it seemed all I could do was try to put one foot in front of the other and plod through while hoping for boredom.

I haven't had to have someone take care of me in a long, long time...years and years, really. I find that I don't like it one little bit. A friend suggested that it's a control issue, and I have to admit that it's partially true. I also don't like the idea of having to be a compliant patient at some point. I know I don't do so well with rules...mostly because I don't like them, and prefer to make up my own. Life's more interesting and makes more sense to me that way.

So, today was my first MRI. It was a piece of cake, really...lie down on a table, get moved in to a weird tube, slap some ear plugs in and try not to move. My conversation with the MRI technician was entertaining:
Tech: Okay, we're going to move you out of the machine to give you the injection of the contrast now.
Me: Okay. I'm pretty sure I can't do much about that right now, hey?
Tech: Not so much. So, do you have good veins?
Me: I have great veins if you're any good at finding them.
Tech: Well, this *is* my first time doing this, and I usually can't hit the broad side of a barn...
Me: (as the tech is palpating...) Oh, there's a nice, meaty vein in my right arm that I think you'll like.
Tech: No shit...it's like a garden hose. I don't even think I need the tourniquet. I guess I should wait for one anyway, but I really think I could hit it without...
Me: I like to live dangerously. I think you should go for it.
Tech: It's Monday morning...I should probably wait.

He hit it on the first try, and left only a small bruise. Not too shabby, really. And now it's time to wait for results.

Horse...THEN Cart...

I was reassured tonight while talking to Mom that everyone has a hard time taking their own well-intended advice. Mine recently to my dear friend to not put the cart before the horse and not freak out until there's something concrete to freak out about are two pieces I should really be taking. But I also know that a very little bit of knowledge can be dangerous at best... So, I say, "Ugh."

Amazon!

So, I actually ordered something from amazon.com. This is a first - somehow, I've managed to get by without it thus far. However, the pull of haunted house led me to purchase a fountain. I'm excited at the thought of incorporating this in the house:
I mean seriously - it has lights!

The thing that was really interesting to me is that the following appeared in the shipment notification e-mail:

Your order is being shipped and cannot be changed by you or our customer service department.

It just sounds so finite to me. There's absolutely nothing I can do to stop this. If I changed my mind, too bad - there's just no turning back. I'm getting that fountain whether I need / want it or not. Even better - it shipped within a few hours of ordering it. I was a bit surprised at how quick the turn-around time was. Wacky. Anyway, I'm just excited and looking forward to getting this.

My Head

It's so interesting explaining the picture of the back of my head to people who don't know me...