Tuesday, August 31, 2010

A River of Tears

I am tired of crying.

I'm not sure if it is going to ever stop or not.

I feel fragmented, as I'm being juggled between three separate living locations.  It makes my heart hurt, but I honestly am having too many issues for it not to occur.

Everyone has been wonderful and supportive.  It isn't their fault that my pain and hormones are not yet being properly managed, and they are all going out of their way to make me feel as comfortable as possible.  Sadly, these moves are disrupting my sleep schedule - and the less I sleep, the higher the pain levels go.

My skin cannot be touched, I want to do emergency surgery on my ovaries, and my headaches are non-stop.

The codeine tabs (even taken with tylenol) are sadly not enough, but I'm scared to call my pain clinic in case they come to the conclusion that I'm a drug addict :/.


I hate ranting on this blog.

So here are my mantras of the evening:

  1. I will work to control what I CAN control, and I will try to let go of everything else.
  2. A situation WILL eventually work its way out in time.
  3. I AM deserving of love and support, even though I currently feel like a slightly-advanced toddler.
  4. The more grateful I try to be, the more reasons I can find to be grateful.
  5. It is enough to have done my best.
What is the easiest way to convince yourself to stop crying?  I know everyone has had experience with this one at one time or another!


Monday, August 30, 2010

Things That Bug Me Mondays

  • Guilt complexes.
  • Mosquito bites.
  • Forgetting my pencil crayons for my new crazy-awesome coloring book!
  • The fact that it takes 8 hours to backup my computer.
  • My last doctor's appointment, where I went completely bat-shit.
  • Cats who are too cute and get in the way of writing blog posts (haha).
  • Missing my twitter friends!
  • A computer that is dying, despite the fact that my dad soldered my computer cord and gave it a golf tee splint.
  • Medication that is so complicated that even my pharmacist mother gets confused when trying to put it in a weekly container set!
  • The lovely stress break-out I have going on.
  • Writing this post on the oddest angle ever as we have a very short extension cord here! Ow.

(Images from WeHeartIt)

What has been getting under your skin this week?  Rant here and get it off of your chest to someone who actually wants to listen!


Sunday, August 29, 2010

Quote of the Day - Chuck Palahniuk

“It’s so hard to forget pain, but it’s even harder to remember sweetness. We have no scar to show for happiness. We learn so little from peace.”

Chuck Palahniuk


Saturday, August 28, 2010


Well, I know a lot of people have been wondering what has happened to me lately (especially those on twitter, who get to see the mega-traumatized posts!).

My medications keep being changed and I am constantly bouncing between strung out and suicidal.  I have been having issues with my relationship.  My laptop/keyboard/ is broken.  I haven't been able to keep myself sufficiently fed, and being alone was making me claustrophobic and miserable.  The sounds were too loud, there were too many people, and I suffer from severe over-sensitization.  I no longer fully trust myself to be around only myself.  I needed a support team.

An opportunity arose to move into my best friend's house in the country.  At first I wasn't sure, but I was sitting down with a cup of tea, looking at the view, and I knew it was the right decision to make for my health.

I'm inconveniencing my boyfriend, and I know this (hopefully, everything will work out...).  But at this stage, a move is pretty much a life or death situation.  My mother will live 10 minutes up the road, so I will get a combination of independence and constant support.

I need quiet.
I need to be able to go outside.
I need to be able to not feel like a prisoner.
But most of all, I need more help.
(And money, but I always need money!)

I'm wishing for peace of mind.  This situation is surreal.
Slowly working my way through my old favorite "Where the Sidewalk Ends" by Shel Silverstein.  SO MUCH LOVE for it!...thought I'd add that on :).

How is everyone else's weekend?  Hopefully less dramatic than mine!!


Friday, August 27, 2010

Love Me Fridays

  • It's almost Invisible Illness Week!  I'm so excited and want to play a part in it!
  • Websites that stream television, as I am too poor to be able to pay for cable.
  • Friends who will come be with you whenever your life is falling apart.
  • Beautiful places in the countryside.
  • That the people in my life are healthier than I am :P.
  • Chamomile tea.
  • The full moon.
  • Down blankets.
  • Driving from ominous black storm clouds into the light!
  • Cats (with dull claws...haha)
  • Chocolate
  • Bright colors. Lots of them. Need cheer.

(Images from WeHeartIt)

What are you loving this week?  My computer is breaking and I've had about 8 sob attacks this week so cheery responses are much needed!


Thursday, August 26, 2010

A Country Girl In The City...

I'm contemplating moving out to the country.

I am having moderate panic attacks about the whole thing, but they are mostly related to change and the lack of control I feel over any situation.  I should think positive.  I should think about the changes, such as the ability to go outside without it being a huge event with staring people.  The thought of not having drug users in our hallway and a drug dealer upstairs is mind-blowing.  We could have a place that wouldn't have a hole through the wall in the hallway, the narrow staircase, or the backwards door (can anyone say fire hazard??).  There would potentially be more help to take care of my failings at emotional regulation.

Jon is thinking he might be okay with coming with me, as I've started to cry all the time again and I'm back to the insomnia.

I think I need a change.  I just need to figure out how.

What about you?  Do you prefer to live in the city or the country??  The suburbs?  How does it affect your illness?


Wednesday, August 25, 2010

Pop Culture Wednesday

This week is just another crazy ride of medication changes, so it only makes sense that I try to soak up the pop culture scene.

Criminal Minds:

I have been soaking this show up like a sponge over the last week! I've watched the entirety of Season 5!  I have had an obsession with cop shows from a very early age, and it apparently isn't stopping anytime soon - especially as my health is being so volatile.  I am moderately in love with Reed (FYI).  The whole show fascinates me though, to view what could possibly going on in the minds of some of the world's most hardened criminals.


This was ADORABLE!  I can't believe I have managed to go this long in my life without checking out this particular Woody Allen movie :).  He is cryogenically frozen and released into the most hilariously bizarre totalitarian society.  Also, I'm not sure if Diane Keaton has ever been more cute than in this movie.

Jeff Buckley:

This has been my CD of choice in my late night insomnia hours these days.  Jeff Buckley was a rare treat in the music world and GRACE is a mind-blowing experience.  Mojo Pin, Grace, Lover You Should Have Come Over, and of course his version of Hallelujah are enough to make my ears melt along with my heart.

What have you been watching and listening to this week?  I've been having a cry-fest, so I don't know whether to wallow in the sad stuff or try to force myself into laughter!  Recommendations please!


Tuesday, August 24, 2010


Some of the lovely friends that I have met online and I are making plans to all meet up in Amsterdam in a few years!

I rarely have big events to look forward to, so this is one that actually has me half-determined to keep pushing forward!

I would need to get a passport and a lot of money, but it would be so much fun!  I have not traveled anywhere outside of Canada and the United States, and I want to experience that European charm!.  Plus, I would be going with fellow afflicted individuals, so there would be a much slower and more tolerable pace.

This situation may never happen.  But even if it doesn't, it will make fine daydream material for awhile :).


(This is totally to help distract from the massive emotional breakdown I am having!)

(Google Images)

What are the locations of your daydream vacations??


Monday, August 23, 2010

Things That Bug Me Mondays

  • The fact that I didn't get a post up on Sunday because I didn't feel good enough to write one :(.  I think that is the first day I have missed a post in a LONG time.
  • I am going up on my Modafinil and find I'm getting more and more tired.  I'm guessing my body is managing to maneuver its way around the drug.
  • I have been stuck at the same spot in my Fight Like A Girl Club article for the last 3 days.
  • People who think that their way of living is vastly superior to others.
  • Mood swings.  I'm not down with them (despite having them constantly!).
  • That karma does not seem to exist, even though I desperately cling to the idea!
  • Spiders.  They scare me.  
  • Not being able to be cook things for myself anymore (brought more to the surface of my brain as I had the most AMAZING meals courtesy of my lovely friend Sarah this weekend!).
  • I wish I lived in the country.
  • And I wish I had watermelon right now.
  • Sore throats.
  • Sleep deprivation (I'm pretty sure I saw double of everything last night!)
  • A recent lack of commenting.  And me commenting on others blogs.  We all need to get back on the bandwagon!  

(Images from WeHeartIt)

Needless to say, my week has been all over the map.  Starting to feel overwhelmed again, so help take my mind off of it and rant away with me!  Let loose some of those cranky thoughts :).


Saturday, August 21, 2010

Quote of the Day

“I think there is something beautiful in reveling in sadness. The proof is how beautiful sad songs can be. So I don’t think being sad is to be avoided. It’s apathy and boredom you want to avoid. But feeling anything is good, I think. Maybe that’s sadistic of me.”

~Joseph Gordon-Levitt

How is everyone's weekend going?!?! I'm a little sickly, so low-key post :(. 


Friday, August 20, 2010

Love Me Fridays

  • TiltedHaloCast and my beloved Rhian for keeping me amused while I'm attempting to write.

  • The fact that Jon won me a stuffed giraffe at the carnival!! It was one of those moments that was straight out of a movie!

  • Being able to write all my symptoms down daily in my new Filofax!  I am special haha.

  • Writing a blog interview for Sarah Von at Yes and Yes!  So exciting, she's such an inspiration!

  • Watching Criminal Minds on a new TV streaming site!

  • Feeling like an investigator, trying to figure out which new drug is causing the worst side effects.  The side effects part sucks, but the investigating is fun :).

  • Hiding in my air conditioned bedroom to handle the Modafinil hot flashes!

  • The fact that I have felt better through Thursday than any other day in the last two months :).

  • Managing to churn out articles and still feeling like I have enough of a brain to keep using it!  

  • I got the dishes done and cleaned out the fridge (even though I bonked my head on the freezer handle and then fell and bonked it on the chair!)

  • The blogs of my friends!  There are so many now that I can't keep them all straight - but I love each and every one of them! 

  • (Random Internet Memes haha)

    What are you grateful for this Friday?? Let's take a minute to be thankful shall we??

    Lots of love,

    Thursday, August 19, 2010

    The Fight For The Right To Write

    I had my MRI's this morning.

    How does anyone stand the noises those machines make?!?  I came out with one of my worst migraines of life. 

    However, after some rest, relaxation, and medication I made a rare outing to the Exhibition!  I haven't been to a carnival in YEARS and YEARS.  I brought earplugs, because it was far too loud, but I would get too disoriented with them in and no guide.  I spent my time sitting and taking pictures of the place, but I did manage to get in and out of the Ferris Wheel!  It made me feel super sick, and yet it was fun at the same time!  So rare that I have the opportunity to do anything :).

    If you want to see some pictures, check out my twitter! http://twitter.com/fragileannie

    My body is not happy with me.

    I'm having mood swings left, right, and center as a result of these changes in drugs.  I have no idea which one is the culprit, but something needs to be altered.  One can never really win with medications :/.

    One of my favorite bloggers, Sarah Von of Yes and Yes, has asked me to do an interview and I'm thrilled to have the chance to answer her questions!!

    --> Tomorrow, I'm going to try to write and write and write!!!

    (Images from WeHeartIt)

    With any luck, my brain will be functioning reasonably well and I will be able to accomplish getting my words out!

    What are you working on right now?  At work?  At home?  In your spare time?  Fill me in on the happenings in your lives!


    Wednesday, August 18, 2010

    Pop Culture Wednesday

    I've been all over the map this week - emotionally, physically, and whatever else is applicable.  As a result, my movie watching has been a bit spastic, and I've actually spent most of the week playing a game that helps distract me in the horrible times.

    Dirty Dancing:

    Every single time I put on the movie Dirty Dancing, my entire face lights up.  I know every single line.  I have the soundtrack.  I am sad that Patrick Swayze died.  I only have about 25 movies that have the ability to raise my spirits so high!  I made the boyfriend watch it with me as he had never seen it before - he seemed to think it wasn't the worst thing the world ever made :).  Sometimes I just put on the movie ending because it is such a pick-me-up!

    Date Night:

    This started off slow, but by the halfway mark I was in HYSTERICAL laughter.  BEST romantic comedy I have seen in years.  Crazy, joyous, rambunctious romp through New York City and a case of mistaken identity.  Doubles for the boyfriend as an action film.  Brilliant.

    Bejeweled Blitz:

    I was a Bejeweled 2 DIEHARD for a long time. I'm actually very good at it. But Bejeweled Blitz is my newest obsession.  One of my friends has an incredibly high score, and I've been trying ALL week to beat him.  Alas, I have failed every single time.  Still such a challenge to do in one minute, while keeping my brain active and calming my thoughts!  Anyone who hasn't played this or a similar mindless game - totally get on it!!

    Also, I was lucky enough to do a guest post over at A Glass Half Shattered.  Check it out!

    Double also (haha), my post is up at the new Fight Like A Girl Club website (as I'm a Power Team Writer there for FMS/CFS!).
    See here and please comment!:
    Become a member too if you are an illness survivor!!


    Tuesday, August 17, 2010

    Being Treated Like A Suffering Human Is Nice...

    I really think this new pain clinic thing might fit well with me.

    They have a wonderful and sweet nurse who takes down everything I have to say, without questioning or mocking. She brings me to the doctor who seems to know more about these types of illnesses (FMS/CFS) than anyone else on this side of Canada.

    In terms of pain management - I will now be wearing a BuTrans patch which will release controlled opiate levels into my system.  I wear it for a week and then switch over to the next one.

    In addition, I'm switching my nightly dose of Gabapentin to be 1800 mg, so that I don't have to rely on Clonazepam to sleep (benzos and opiates apparently are not to be mixed!).

    My tolerance for the Modafinil is also slowly, but surely, going up.

    I have to go back for more blood tests, as there was an abnormality with my parathyroid levels.  My calcium and magnesium tested okay, so he wants to redo the blood work and check for hidden autoimmune diseases.  He was quite interested in the fact that I have been having some blotchy face rashes over the past month.

    I am also scheduling my first set in a round of sleep tests, but the machine you take home is on a waiting list.  It should be able to help rule out the possibility of sleep apnea.

    I'm hoping that all of this change will be able to bring about some form of relief to my life...maybe even some productivity!  Plus, I got my Filofax in the mail today, so I can jot down notes for every day now!  Super psyched!


    Moral of the story:  I felt heard.  I felt like my life mattered to said doctor and nurse.  That is really all it takes to warm my cold, bitter heart.

    Much love,

    Monday, August 16, 2010

    Things That Bug Me Mondays

    • Breaking more parts of my computer.  I may be the clumsiest person of life.
    • The fact that I'm starting to feel like I need a full body splint in order to cut down on some of the mass pain!
    • That it seems impossible to do all of my Trigger Point Therapy alone (minus the occasional moment of after Jon gets home from work).
    • The fact that I have thrown up a LOT - but never as painfully as I did on Saturday.  I felt like I tore my insides apart.
    • Still waiting on that Filofax haha.
    • My diet = Glucerna + pills. Exciting. Except not.
    • I start upping my dose of Modafinil again this week in the hopes that my body will choose to adapt.
    • Changing birth control pills has led to massive pelvic pain for about 8 days out of my month.  
    • Developer commentary for Left4Dead games --> as Jon has managed to find them and play them and fill my brain with such information.
    • The Modafinil is making me sharper at the time of dosing, but my short-term memory is still shot down the drain.
    • I've been a giant pile of cranky. I'm not going to lie.

    (Images from WeHeartIt and XKCD)

    What is getting under your skin right now?  Let's have some group therapy and throw some rants into the ring, and then try to forget about them for the rest of the week, shall we??


      Sunday, August 15, 2010

      Fave Quotes: Naomi Watts

      I always love being in the company of women. It's all about good conversation and great wine.
      Naomi Watts 

      I find myself gravitating towards drama. It interests me. In the books I read, the paintings I like, it's always the darker stuff.
      Naomi Watts 

      Pain is such an important thing in life. I think that as an artist you have to experience suffering.
      Naomi Watts 

      You have to make peace with yourself. The key is to find the harmony in what you have.
      Naomi Watts 

      (Image from SuicideBlonde's Tumblr)

      A few of these touched my heart.

      And I'm not going to lie, I'm exhausted from the pain of it all!  Hence, low effort blog posting haha.  

      What actresses make you run to the silver screen (usually to escape the horrors of daily existence...)??

      Hope you are all having wonderful weekends!


      Saturday, August 14, 2010

      We Do Not Want Death From Depression Alone...

      The more time I spend on this blog (and twitter!) the more I realize just how many amazing women and men have been destroyed by invisible chronic illnesses.

      Their pain is immense. To the point that they want to die. Hell, sometimes I want to die. My friend Melissa wrote a touching post on this very topic: http://drsnitwithlupus.blogspot.com/2010/08/yes-you-should-want-to-die-right-now.html. She also gave me hope for how to deal with doctors in a more productive and less bitter manner, and for that I am very grateful.

      My pain medication is nowhere near potent enough.  I hit pain levels that I am physically incapable of using coping skills towards.

      As I said to a good friend, I was vibrant, young, funny, and cute (as is she!)...but it is like we are mourning the death of ourselves, while still being alive to watch it.

      How does one deal with such a state of existence??

      • Positive coping skills keep me alive.
      • Good pain medications keep me alive.
      • An excellent support team - my boyfriend and family keep me alive.
      • This blog keeps me alive.
      • Twitter keeps me alive.
      • Being there for some of my beloved friends keeps me alive.
      The list is short.  But it is important all the same. 

      I talked to my mother today and it was amazing.  She is willing to be there with me at my pain clinic on Monday, and she is willing to fight for better medication.  I need an advocate (especially a pharmacist advocate!).

      If not, we will ask for a referral.  Simple as that.


      Friday, August 13, 2010

      Love Me Fridays

      • I love my bed.
      • I love my cell phone for being able to keep in touch with my favorite girls and guys.
      • I love the support of my family, for coming down to feed me yesterday.  My mother is a pharmacist and made special capsules of smaller medication for me to try out.  She is amazing.
      • I love the show Castle for always giving me a pick up.
      • I love the thought of potentially being productive someday.
      • My tiny pill of Modafinil didn't make me super sick today, even though I'm in bed sick with other things! Haha
      • The chance of hope. I lost hope for awhile. I still don't have a lot of it. But I have some. And that is enough :).
      • My boyfriend for buying me a gluten free tuna sandwich when I was too weak to make anything :).
      • Cold drinks with straws.
      • Hearing the voices of Internet friends :)

      I need to make this for Jon haha
      (Images from WeHeartIt)

      It's been a tough week.  I've been crying every single day, but I still found things to be grateful for, and that is how you know you are going to somehow make it through.

      What are you grateful for this week??  What is keeping you going?  Making life worth living?  Warm my heart, will you? 


      Thursday, August 12, 2010

      Trial and Error

      I start back on a pill tomorrow that landed me in the hospital.

      Mind you, it is being dosed very, very small.

      I'm not sure how I feel about this.

      But I also know that I am willing to do anything to combat this crippling pain and physical and mental fatigue.

      Soooooo...guinea pig I will be, now that the doc thinks I have narcolepsy! (Haha, I rhyme!)


      As for today, I'm laying here with every muscle hurting and my jaw seized up with TMJ from a rather unpleasant visit to the dentist this morning.

      I despise going to the dentist worse than anything in life. Even more than vomiting and spiders, it's that serious (although not more than the idea of vomiting spiders - which scares me into a state of panic haha).

      The event is over now.  Apparently, I have awesome teeth but have been grinding them to smithereens.  Also, my gums in parts are receding and allowing for easily touched nerves.  Mmmm.

      My stomach still isn't holding food.  Now it's time to bring in the meal-replacement shake joys!


      Wednesday, August 11, 2010

      Pop Culture Wednesday

      So this week has been quite a shuffle, and as a result - Pop Culture Wednesday won't be all movies this week!!


      This show is an absolute riot! Easily one of the funniest things you can witness on DVD right now if you didn't catch it while it ran on MTV.  My friends and I remind me so much of Daria and Jane - it warms my heart and brings me right back to the 90s.  HIGHLY RECOMMENDED if you have any sense of snark!

      Tom Petty's - Saving Grace:

      Amazing album that has been on rotation all week around my apartment.  It helps that I love Tom Petty and wish he was all mine.  I know a few friends that would jump all over me for saying that!! I need to get a copy of the newest album ASAP!  He eases my pain.

      Florence and the Machine's - Lungs:

      My other go-to album as of late!  Mind-blowing.  Easily one of the best albums I own.  Kiss With A Fist and Dog Days Are Over could easily play in my head until the end of time and I doubt I would be able to get sick of either song.  If you don't have this album - GO GET IT!


      This is what is currently playing non-stop in the background of my apartment.  Noise to me really.  I have played numerous rounds of this game though, and it is very fun.  I like zombies, I like crazy weapons, and I like destroying things - so obviously, it is a decent fit!  My boyfriend cannot get enough of it lately.  Sadly, I can recommend it based on the fact that it is better than most other games he plays constantly in the living room!

      I have also started reading Milan Kundera's Immortality which I am totally psyched about! I'm a much slower reader now though, so it will take me forever...

      What else is everyone distracting themselves with this week?? Give me some recommendations please lovies!


      Tuesday, August 10, 2010

      A New Drug - A Bad Hospital Visit

      For the first time in about a year, I have the capacity to make a reasonable thought in a short period of time.

      This of course is thanks to the new drug.  Mind you, I never know if side effects are going to be enough to do me in!

      So far with Modafinil I have noticed:
      • Nausea
      • Vomiting
      • No appetite
      • Hot flashes
      • KILLER Headaches
      • Constant Diarrhea
      Just what everyone wants to hear right?!?! Hahaha.

      However, on the plus side I have noticed:
      • Increased brain activity
      • Coherent thoughts
      • The ability to read more than one sentence! Right now - Milan Kundera's Immortality!!!!!
      • The ability to walk more easily (although it only lasts briefly!!)
      It seems crazy to have to play so much with my brain chemicals to be able to borderline function.  I have the ability to go test for a job on Wednesday, but I think it may be too soon for that. I am still not getting the full half-life of the drug, and my side effects are too volatile.  

      Sometimes I wonder if this would allow me to get back in the workplace, but I still have my doubts.  HOWEVER - I could always sit at home and take cold showers every twenty minutes and maybe churn out something that someone might want to read!  Exciting idea to me for sure!

      This drug is actually the first thing I've gotten excited about in a long time.  It's a tiny glimmer of hope to at least be participating in the lives of my family, boyfriend, and friends.  

      If only people could understand just how debilitating chronic illness is - especially the ones that the doctors have very few ideas on how to treat!


      Update: I spent from 1 p.m. until 5 p.m. bawling in pain from the worst headache/migraine thing I had ever felt in my entire life, as well as intestines which wouldn't stop cramping.

      I went to the Emergency Room around 5:30 p.m.  I was visibly crying and in excruciating pain in my head, intestines/stomach, and leg.  I was first visited by a student doctor, who was sweet and very thorough.  He, however, could not help my pain.  Took almost 40 more minutes for the next doctor to come see me.  Briefly he scanned my chart, flashed lights in my eyes and scolded me to force them open when I was visibly shaking from pain, and then left me with a 1 mg Ativan and an intramuscular shot of Tramadol. I was treated like a cheap drug addict as soon as I mentioned my medication and my diagnoses.

      I was then proceeded to be ignored even though the treatments didn't work.

      It makes a mockery of our health system.  Disgusting.

      Has anyone else had this kind of treatment??


      Monday, August 9, 2010

      Things That Bug Me Mondays

      • Bad reactions to new medications.
      • The fact that my toenails have to be so far away whenever I want to paint them.
      • I have no energy to do anything during the prime hours of the day.  Thank God we have one 24 hour grocery store or I would never get anything done!
      • My legs are getting weaker.
      • The rough situation my friend is currently going through :(.
      • I have completely lost that thing known to the world as an appetite.
      • Feeling stuck in crisis mode.
      • The fact that I have become too tired to walk without the help of stimulants. Gah.
      • I want my new Filofax to come in the mail!
      • Carpal Tunnel. Ow.
      • I need to buy some more medical self-help books. I should open a library.

      (WeHeartIt and TheDailyWhat)

      Hopefully, I came up with the right combination of sad and bitter, and yet optimistic and borderline amusing!

      What do you need to get off your chest this week?  Vent it out with me, you'll feel better afterwards!!  I promise :).


      Sunday, August 8, 2010

      Sunday Blues

      So I took my first dose of Modafinil today.

      I looked strung out within about 15 minutes.  I was awake, but I became so brutally nauseous that I vomited FOREVER.

      This is the third time I've puked in the last 24 hours, all of which have sent my pain pills down the drain.  I win at life.  And at being expensive.

      I will try it again tomorrow with a banana or something in my stomach.  We'll see if I have the same reaction.

      This is how I feel about today:

      (Image from WeHeartIt)

      Is everyone having a good weekend? Fill me in on what is happening!


      Saturday, August 7, 2010

      Chronic Illness Patients - I Salute You

      So I started this morning with a nosebleed, dry heaves, and a right leg with incredible pain.

      Then I went to the psychiatrist, who determined that I have hypersomnia - which I already knew in a way.  I was prescribed Modafinil so hopefully it will be able to channel my thoughts into some sort of productive manner.

      What really got me though was how hard he was pushing on me.  He concluded that if I had the ability to write this blog every day, I obviously have the ability to channel my illness away and be productive.  As a result, he believes I should be able to do this with my entire life.

      He asked what I would do if I was sick like this for my entire life.  I told him I had already taken that to be the case, and the best thing I can do is just to get up and keep trying each morning.  Sometimes I feel like the sick fall into this category of simply being the people who can't push hard enough to overcome their symptoms.

      I don't believe this to be true.

      I believe anyone who is in this circumstance is a fighter.
      They don't kill themselves.
      They don't move into constant feelings of self-pity.
      They try, even if it is only slight movements a day.

      I respect each and every chronic pain and illness fighter out there.  Today, and every day, I have you all in my heart.

      So much love,

      Friday, August 6, 2010

      Love Me Fridays

      • The loves of my life - Jon, Family, Twitter friends, real friends!
      • Painkillers
      • Daria (just started watching it again!!)
      • Tumblr for its ability to be endlessly entertaining.
      • The movie Penelope, which I watch every time I'm feeling down.
      • Being back in my apartment in Charlottetown, attempting to be remotely independent.
      • Being able to text with my friends on my new cell phone, even if it is only a prepaid one :).
      • Having some alone time again.  I loved spending time with my family on vacation but it was just go-go-go!  I'm sure the novelty of being alone will wear off in like two days, but right now I just need the rest :).
      • Making salmon for supper! My first night of cooking again in weeks...
      • This article! http://dancingwithpain.com/10-culprits-of-the-good-patient-syndrome-2/
      • Ice cream and air conditioning!
      • Motivational quotes...any quotes...song lyrics...I'm obsessed with them all!
      • The Lady Gaga Vanity Fair cover - it is sooooo beautiful :)

      (Images from WeHeartIt)

      What are you loving this week?? Share the joy!


      Thursday, August 5, 2010

      Hope Amidst The Pain

      So...I need a med adjustment.

      The tapering off did not work well at all - this is well established.

      My med level (the way it is) leaves me in severe pain every day and without the ability to put a basic thought together for 3/4s of the day.  This obviously isn't okay.

      Whether it is a stimulant for day, or a better sleep med at night - I need something.

      The Gabapentin needs to be upped again, or I need to switch back to Lyrica.

      I may need opiates.

      I have two important doctors appointments coming up within this month.  Not that I want to put too much enthusiasm into them, as I'm sure I will end up being disappointed with the way they handle the situation of my illnesses.

      I have to have hope though.  Hope is what keeps me going.

      • I have hope for Jonathan and I, as a team.  
      • I have hope for making friends that I could potentially keep and have as part of my life. 
      •  I have hope that I may perhaps get freelance work at some point where I could make some of my own money! 
      • I have hope of eventually adding to my already wonderful family :).
      • I have hope that someday my pain could be lessened, or even further understood.
      • I have hope that I may be able to change my thought patterns to more body-friendly ones!
      • I have hope that someday the social assistance program for sick individuals will be of more help!
      • I have hope that I will be able to help some people and touch their hearts the way some have touched mine :).
      • I have hope to be able to write and paint and try to keep my stress levels as low as possible!
      So many reasons to keep fighting!!!

      What are yours??


      P.S. Psyched about Proposition 8 being overturned!!
      (Image from WeHeartIt)

      Wednesday, August 4, 2010

      Pop Culture Wednesday

      I have a new batch of pop culture reviews for everyone!


      This was a solid, grade A, action flick.  I REALLY enjoyed it.  Inception is still the better movie currently in theaters, but this is definitely worth a watch!  Angelina Jolie was amazingly slick in the role; along with Zoe Saldana (see other review...), she is the best female action hero in the movie business.  Extremely violent, but captivating all the same.


      Adorable television show!  It isn't a particularly new idea, but Nathan Fillion is adorable all of the time.  His character is full of wit and sass, and they are going to take the sexual tension thing to the limit!  Falls into the CSI/Criminal Minds type of episode dynamic, but a lot of fun when laying on the couch.

      The Losers:
      I had virtually no expectations going into this movie.  I was pleasantly surprised!  The movie is over-the-top and plays like an MTV video, but the story was clever, the action was fun, and the right people won in the end! :).  Don't expect any real depth though, this one is just for kicks!

      What have you been watching/listening to this week??


      Tuesday, August 3, 2010

      My Thoughts on My Local Medical Institutions

      For the latest ChronicBabe Blog Carnival, Jenni asks how we feel and work around our medical institutions as chronically ill patients.

      I live in Prince Edward Island, Canada.  We have universal health care here.  It is reasonable to think that a chronically ill patient would think this was a dream land, compared to the privatized U.S. system.  Sadly, I've never been particularly impressed by it.

      I see important (previously-seen) doctors approximately once a month (if lucky!).  A referral can take up to two years.  I have been waiting for a family doctor for two years now.

      I can't say that the system hasn't been thorough in their investigations, as I feel like I have had every medical test known to man done!  None of these tests have cost me any money, and in this sense I am very lucky.  My debt instead comes from the outrageous prices of my medications and the lack of government help regarding the fact that I have never been able to hold down a job.

      Current plan:

      1. Call Social Services and see if anything can be done regarding disability - even if it is only low-income housing!
      2. Open a joint savings account with Jon to help pay for big purchases/debt.
      3. Try to raise awareness of those who are considered disabled, yet are falling through the cracks of the system.
      I am not impressed by the fact that throughout my years of investigations I was labeled as an over-dramatic and crazy patient for the reactions I had to both medications and situations.  Not a health care strong point.

      However, I now appear to be properly diagnosed and I am being reasonably managed by the doctors in my life.  The problem with small centers is that they always seem behind the times - even in the case of medical knowledge.  It has been 11 years, but I can just now say I'm beginning to make real progress, even though I feel more than ever to be falling apart.  The mental healing process has started.  The unknown has the ability to do horrible things to the psyche.

      What was your experience with being diagnosed??


      Monday, August 2, 2010

      Things That Bug Me Mondays

      Another week, another chance at life! (Well, it's actually a new day...but whatever...).

      This week, I have these pesky issues on my mind:

      • The fact that I do not qualify for disability as far as we can tell.  Jon doesn't make enough money for the two of us, and I hate having my family paying so much for me to live away.  Blargh.  I have no idea what to do for money.
      • I seem to be allergic to the entire lower floor of my house.  Not sure what to do about that...
      • My sister goes back to Halifax today :(.  This makes me sad as I don't get to see her very often!
      • Futureshop not having the model of laptop in stock that we went shopping for :(.
      • The fact that the food I make never tastes as good as that made by others.
      • I miss my Kimberley on Twitter!
      • I want to buy a Filofax and am completely poor and yet probably will anyways.  I like paper and pen planners better than my electronic devices.
      • My stomach is aching from trying to keep food down when it is so used to throwing up :(.
      • I feel bad about regarding my drug lessening attempt as a failure, as I know it is not remotely wrong to be required to be run on drugs. I was just disappointed that I couldn't be as free (even though I have known this from numerous previous attempts...).
      • I will just be getting used to one bed and it will be time to move back to the other (less comfy) bed.

      (Images from WeHeartIt)

      What is grinding your gears this week?  Have a rant session here and get it off of your chest!  I think it's a healthy way to start the week and then choose to remain positive :).