Wednesday, January 5, 2011

Day 20: Day of Nothing

Sadly, my day of nothing worked. I say sadly, because I don't want to have to do nothing just to feel ok. I woke up extremely late (12:50pm), but otherwise everything else went fine and I stuck to just 1500mg of Diamox.

After writing last night, I did have another symptom that I just want to jot down here and will perhaps expand upon another day when I don't want to go to sleep so desperately: I got crazy food cravings. It actually happened the night before, also and I just forgot until it happened again. I know this is somehow connected to my silly disease, but I don't know how.

Tonight I am going to bed without eating crazy, without a crazy headache, simply with the insanity of someone who sat on the couch all day except when taking a break for the adventures of showering and feeding herself. woo. hoo. (lowercase is completely intentional... just like any sarcasm that you might be picking up!).

Well, I am just plain tuckered out, so off to bed with me.


Monday, January 3, 2011

Days 7-19: The Holidays, Houseguest and, Unfortunately, Headaches...

I am posting with a headache right now. I am not happy about it, but it is true. I did not post here for the entire time that I had houseguests. I didn't think it would last so long, but on the 26th we had a terrible blizzard which stopped all transportation out of NYC.

Anyway, at first, it seemed all was going to be well on my decreased dose of Diamox even through the holidays, but in week two of the experiment I started to notice some changes. December 30th (day 15) was the first day that I actually had to STOP all activity due to a headache and lay on the couch just waiting for the world to turn right side up again (I am VERY close to that right now). However, I wasn't terribly surprised by the headache, since I was feeling some other less painful side effects in the days before such as ear ringing, stiff neck and some eye pressure.

So, what did you DO, Nicole? I hear you ask. Right now, with my head in extreme pain, I am pretty pissed to say - I did absolutely NOTHING! I continued the experiment telling myself and all concerned family members, "It is probably just the crazy holiday schedule," because I really was doing WAY MORE than I normally do. Today, did I do too much?? If so, that would be really annoying because I didn't do much at all -
  • cooked dinner, 
  • did a load of laundry, 
  • did 2 loads of dishes, 
  • put bird seed out for the starving birds, 
  • pried out my snowed in garbage to be picked up (FINALLY!! ~no garbage pickup since before Christmas because of the blizzard!!) tomorrow morning, 
  • played on my Wii (this was probably too much), 
  • wrote a blog post, 
  • spoke to my best friend on the phone and accidentally hung up on her about 5 different times, 
  • did two sudoku puzzles (was that too much strain on my eyes?!),
  • got and read the mail,
  • packed up a book for shipping that I sold on,
  • fed my dogs
OK... this list is longer than I thought, but, honestly, if you read all of this stuff, it is really nothing considering I have been awake since 9am and it is now 9pm.

Right now the top of my head hurts a lot, my left eye hurts a bit (and my vision is a little blurrier than I would like to admit), I have had ringing in my ears for a couple of hours (Oh man... I am being such a moron letting all of these things pile up) and earlier today my left ear actually hurt pretty badly.

The question is this: Do I take a look at that list above and tell myself, "OK, you can't handle that level of activity (PATHETIC!!), tomorrow just chill out a bit more," and continue on my current dosage of 1500mg (three pills) of Diamox per day with the hopes that all will be well in a couple of days?
Do I crack open one of the capsules like my doctor said I could and take more than 3 pills for some time to see if that helps, thereby moving backwards and further from my goal of being off this Diamox?

For now: I rest. Decision by tomorrow.

Tuesday, December 21, 2010

Days 5 & 6: Shopping and Baking

Yesterday I went shopping after a slow morning/afternoon start. Once I got into the store I was shopping all around, looking at all different products, labels, prices, etc and had no headache the whole time! I was exhausted by the end of the night and slept like a baby.

Today, I woke up at a normal time, had my breakfast, but, for some reason, completely forgot to take my medicine until about 2pm!! I realized I was without meds when my vision got a little wiggly. It has pretty much stayed that way all day and I think, if it doesn't change back to normal by tomorrow I might have to rethink my dosage of Diamox.For now, I am keeping my fingers crossed that I didn't make too much of a mistake today by messing up my morning meeds!!

Wiggly vision or not, I baked a whole bunch of yummy cookies today! :)

Sunday, December 19, 2010

Day 4: Holiday Parties Gallore

I made it. I had one scare in the first holiday party of a possible tummy malfunction, and a bizarre feeling in between the two parties, but, considering what I was up against today, I have to say this day ended in a rounding success.

I overslept after late-night baking the night before. I knew I was going to miss my haircut appointment, but figured I had to keep my priorities straight - well-rested has to rank over perfectly groomed locks. I woke up with barely enough time to get ready for our first holiday party starting at around 12:30-1pm. I was nervous about eating all day thinking, how will I ensure that I don't accidentally have gluten and ruin my day? The menu seemed pretty safe, so I ordered, ate and kept drinking water. At some point during the event, my stomach flipped and alerted me to the fact that somewhere along the line I had made a mistake. I went to the bathroom and had Pepto Bismol (two chewable tablets I brought with me in case this happened). Luckily that did the trick!

We came home in between the two parties to check on the dogs and get our gift for the Kris Kringle in the evening party. During our time home I felt a little "woogy." I know that is not a word, but that is how I explain the feeling of a simmering headache, with a little brain fog. However, what was more worrisome was as I sat in front of my computer cleaning out my camera of old pictures so I could take new ones during the night, I felt the drip inside my head. This may sound like the weirdest thing ever, but it is something that I discovered does occasionally happen with my IIH - it is kind of like a nasal drip, but it is not in the same place as a nasal drip. It is almost behind where that happens. If I am lying on my side (which is what I was doing the first time I ever noticed it) the drip lands somewhere in my head behind my ear. When I am upright, as I was today, the drip almost seems to land in my head behind the roof of my mouth. It is weird, I know - I mean you must think it is weird, because it freaks ME OUT!

Anyway, I noted the time when this was happening, so I could write it down here tonight - it was about 6:40pm. I had taken my "morning" dose of Diamox at approximately 11am, along with my other meds (Pepcid AC & Lialda for Crohn's and Potassium, Vitamin C and TMG supplements) and scrambled eggs. I obviously ate something at party #1 that upset my stomach, so that may have also contributed to the wooginess and head drip, but that is part of my own non-professional theory. Ooo! Also of not, I got my period today, which could be messing with my insides causing all types of havoc.

The rest of the night went off without a hitch. I drank TONS of water and took my nighttime Diamox promptly at 10:45 pm when I started to feel a bit of discomfort in my head (psychological or not, I decided not to test the reasons behind that in the middle of a Christmas party with lots of flashing lights and loud music!). I am home now and so ready for sleep. I can't believe I made it through tonight without any great illness drama and want to go end today on a good note before any of that can change!!

Good night!

Saturday, December 18, 2010

Day 3: Tired?

Today was my third day of 1500mg of Diamox (down from 2000mg), but it was also my first day taking a new Vitamin C supplement. I went to my nutritionist last night and, along with my regular visit/update, I asked if I should be taking some sort of multivitamin since, with Crohn's disease I don't do so well with vitamin absorbtion. She said I wasn't ready for it yet, but she would keep testing me to se when my body was ready, but then she did say maybe I could start with Vitamin C, since that has always been one of my lowest vitamins.

I took it in the morning with my regular chemical cocktail after breakfast. (I did also wake up pretty early this morning - 5am-ish). Approximately 20-30 minutes after taking all of my medicine, I feel fast asleep on my couch! I think I slept for about an hour, at least. It was crazy, but what was worse was how ridiculously thirsty I was when I woke up! In fact, I actually believe it was the THIRST that woke me up.

So, I know my sleep has been buggy the past couple of days (weeks?)... I don't know if the sleepiness is an effect of the medicine changes or buggy sleep, but I figured I should write it down anyway. The rest of the day was pretty uneventful (symptomatically, anyway) aside from being a little late to take my nighttime Diamox dose. I felt a little uncomfortable at around 10:50pm (I still wasn't home) and began to get a little worried that I would get a bad headache from taking the medicine so long after 10:30pm. When I arrived home at 11pm, it was the first thing I did. I don't know if the lack of comfort was "psychological" or legitimate, but I thought I should write that too.

Tomorrow will be challenging: two Christmas parties. A long day.


Friday, December 17, 2010

P4A 2010 IH Our Story

Here is a video put together by a fellow IH patient in order to help raise awareness. It shares a number of patient perspectives about life with the disease (including my own). It is a great snapshot of some of the ways Intracranial Hypertension affects those who have it.

Don't forget, after you have seen the video, go check out the Intracranial Hypertension Research Foundation for further information or to donate to this cause. IHRF is the only non-profit organization in the WORLD devoted to supporting the medical research of chronic intracranial hypertension - it is more than a worthy cause.

Thursday, December 16, 2010

Day 2: Keeping My Eye on The Prize

Last night was hilarious. I could NOT sleep. Why is this funny, you ask? Simply due to the reason I couldn't sleep - I was HOT. That is the complete OPPOSITE of everything I have been feeling for the last couple of weeks, but we totally overdid it last night. On top of my five blankets I sleep with (one of which is an electric blanket), and having the heat n in the house, we positioned a space heater, on high right next to my side of the bed. It was torture. I fell asleep at six in the morning and woke at about 11:30 am.

I enter this here, because I am sure that had ill-effects on my day. At around 5pm I got a headache, not a terrible one, but I can't say it didn't worry me. However, I decided not to freak out and think about some non-disease related reasons why I might have had this headaache:
  • stupid sleep pattern
  • silly eating (gluten-free cereal for breakfast, but no lunch!)
  • dehydration - I don't think I have been drinking enough water while home
  • emotional stress - Dr. Oz had a segment on cancer that I thought it would be a good idea for me to watch due to family history and such. I had to walk away from the TV when one story sounded a little bit too much like my mother's... That surprised me, I mean I surprised me there...
It is now reaching the hour when I am about to take my nighttime dose of my Diamox and I have to say, the headache didn't last very  long and as I said, it wasn't a killer either. It was just there, but that's OK. TONIGHT I AM GOING TO SLEEP LIKE A NORMAL HUMAN BEING and TOMORROW IS GOING TO BE AWESOME!!!