today started off on a bad note:

"you went to sleep so early last night...i don't understand how you're tired."

seriously? i always wake up tired. same shit, different day. i'm sure eight and a half hours of sleep is sufficient for the average person, but definitely not for me-- especially when i'm waking up three times a night. 

i swear, this isn't even a subject i should have to speak about!

i've been flaring this week, just in time for my rheumatology appointment with krishnamurthy this evening. what fun..

newburgh: day one.

so i'm here in newburgh, watching dance moms online, in the house alone. i twisted my whole head because i'm so bored. my brother's at work in the city, my sister in-law and niece are at the grocery store stocking up on goodies and water, my nephew's at football practice, and my brother's mom is somewhere in the area with her friend.

my mom called this morning. she's definitely not coming home tomorrow. the airports are shut down until further notice. i'm stressed and worried. my dad's not doing too good, either. my mom told me he's light-headed and his balance is off because he's so worried about me.

i'm exhausted; i didn't sleep very well. the springs in the mattress in the sofa bed were annoying me. my hands have been swollen since last night. my head's starting to hurt a little. the brain fog is killing me, and i'm not even doing much. 

i'm not supposed to nap, but i'm about to lay back down.

a random ramble..

all my tests came back normal! stool, sonograms, pap smears, blood: all good! no chrons! no weird shit in my ovaries! no stds! no lupus! so these random pains are just because, i guess..

i'm experiencing cramps for the first time in about five years. i wasn't on birth control last month because i had to get a new prescription, so now the cramps are ridiculous-- so ridiculous, i wore sweats to work yesterday.

i stayed home today. i need a personal day, because i really feel like i've been running myself ragged. i probably used up all of my paid sick days and personal time, so i'll just have to take it as a loss.

my parents are in barbados, where my dad's originally from. my mom flew down with him because he's too sick to travel alone-- he was diagnosed with parkinson's back in 2004-- so i'm home alone. with this damn hurricane coming. irene better act right and not flood my damn house. 


so i'm staying home this weekend. in my parent's bed. i may go to dinner tonight with darrel.

my hand's starting to swell as i'm typing, and i need to make an attempt at this logo for my etsy store, so later days..

random update.

forgive my absence, once again. things are crazy, as i am trying to keep myself somewhat busy and not so engulfed in this jail we call fibromyalgia.

super duper quick post before bed:

• saturday i went to lunch with my natural hair girls. i needed that. lots of good laughs. we went to coffee shop in union square; i love their herb fries!
• i started making bracelets. they're just cute little trinkets to keep me amused and entertained. i'm still debating if to sell them, since i tend to get aggravated when i have to depend on a hobby for a profit or income.
• today we had a little earthquake; it was more of an after shock. i didn't feel it in my office, but other buildings on the street did and they evacuated. cell service was down for a while, so i had a hard time getting in contact with my parents, darrel, or my family in virginia where the quake hit, but everyone's accounted for, and no one was injured.
• my tattoo's itching. horribly. i've never had a tat itch so much. but it's healing.
• tomorrow's another doctors appointment. i hope he doesn't agree with this whole sleep apnea theory.

that's about it. i'm watching whites on hulu until i knock out.

the big reveal..

so i got a new tattoo!

back on august7th, i posted this pic:

well my darling alex asked me about it, and after explaining it, i decided it would be a great tattoo. it would be a great reminder that no matter how bad my day is going or how much pain i'm in. i need to stay strong.

my little cousin chanica works at greene avenue tattoo in bed stuy. after work yesterday, i met up with a few of them and we all went.

she was happy to call herself my support system for that moment.

white boy did i great job! he was very talkative, which helped me relax a lot more.

the pain was definitely not as bad as i thought it would be. the pd tulip on my back hurt a hell of a lot more!

and it's done! thanks white boy! i'll be back soon =]

pics from the natural hair meet up last weekend with alex!

here's a sneak peek!!

here's a hint: i posted about it once before!

more details coming soon!

f#*%ing fibromyalgia

so i've been posting on my twitter page about wanting guest bloggers to share their experiences, and along came erin. our initial conversation was about keeping lint out of my natural hair; it was just a coincidence that we both have fibromyalgia. here's her story:

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as a guest blogger, i feel like i have to watch my colorful language as i try to describe the joys of fibromyalgia. for anyone who doesn't know, sometimes all the profanity in the world does not help.

 

it's an invisible, torturous, all consuming pain in the ass. when my symptoms first started to interfere with my daily life, i swore i was losing my mind. i couldn't explain how, all of a sudden, everything hurt. some days, it's just between my shoulder blades and the tops of my shoulders. there are nights when my legs feel like i've run an ultra-marathon. at times, i feel like a goddamn elephant is sitting on top of my head getting a piggy back as i try not to have a meltdown at my desk. i'm not in pain because i am depressed; but there are times where i am utterly depressed from the pain.

 

me, the life of the party. the girl who works two jobs and goes to school and parties all weekend and volunteers and blah blah blah; that same me can sometimes be found in the bathroom at work, hands on the counter staring in the mirror and wishing that the ground would come up and swallow me whole so that i can get some peace for a change.

 

yes, i'm glad i finally have a diagnosis. there's actually a name for the BS that i'm going through-- which means, i'm not crazy, i'm not "just tired/achy/irritable/exaggerating." there are other people who go through the exact same thing, and sometimes, there are things that may help.

 

i went to an acupuncturist the other day, only for him to tell me that i have fibromyalgia because i "think" i have it. and the minute i stop "thinking" it, it will go away and life will go back to normal. *head starts to swell from instant defensive angry reaction to this ignorance*

 

ok, so my hands will stop swelling? the chronic fatigue will magically cease? i will be able to go back to the gym without nearly dying? i can detangle my curly hair by myself without bursting into tears of pain and frustration? GREAT! thanks bud!

 

enough of my sarcastic rant ... there are days when i feel like all i do is complain-- which i absolutely hate. i hate listening to other people bitch and moan and i certainly do not enjoy hearing myself do it either. but because fibromyalgia is so invisible.. i feel that if i don't complain, nobody will know that i am legitimately in agony. those who know me see it in my eyes. but i hide it well, most days on purpose.

 

sometimes, another flight of stairs will mean i am going to pay for them for a week. at times, i'm silently staring at my 6inch stilettos because the vain me knows that i absolutely cannot go out on the town in flats. the other me knows that i will feel like i am wearing daggers up through my legs for four hours, and puts the shoes i so desperately love back on the shelf. lest i spend three days walking on tiptoes and praying for a miracle. or the zombie apocalypse. anything to make it stop.

 

i know i have not "accepted" my fibromyalgia. i have not come to terms with pacing myself. i don't feel ready to pace myself. i'm 21 years old! i want to be able to strut my stuff in my fabulous shoes, and i'm not ready to give that up. i miss the me that wasn't in pain.. but i'm finding her hard to remember.

 

phew! all this typing has my fingers burning. no joke, i think i need to go lay down. and i f@$#ing hate it!

 

 as we say on twitter, #thatisall.

 

 

ps - for those who don't have fibromyalgia: i'm having a flare today; right now. most days, i am the sweetest, most optimistic girl you'd ever want to meet! *cheesy grin*

savella: day twenty eight.

this is my last day taking the pills from the starter pack; which means it's my last day of knowing how many days i've been on savella. tomorrow, i take pills from the bottle like a big girl.

my mom started me on valerian root tablets. valerian is the natural herb that's compounded with other chemicals to create valium. it's supposed to help with my insomnia. let's see how that works.

and the damn rheumatologist STILL hasn't called me back! ugh!!

i'm sitting on my couch, watching the season finale of hawthorne on dvr. i'm loving it! her kids are in this dance scene. it's too cute. i love that family.

the valerian root should be kicking in soon.

tomorrow's a big day for me. i'll post on it soon. until then, gnite <3

i found a grey hair; i honestly think being sick is stressing me out.

guest blogger: cory B.

cory B. is one of my best friends. she's never experienced one of my flares first hand, but she definitely knows what i go through. when i asked her if she'd write about her biffle having fibromyalgia; this is what she said:

"we all have our bad days.. but i couldn't imagine it lasting for as long as it does for ava. trying to work, go to school, live your life & just do the normal everyday grind, all while experiencing pain, swelling, headaches etc.. takes a strong person to persevere. i love & respect everything about ava not only being a hardworking woman but a strong woman thru all the struggle."


i read this and i cried. i love cory so much <3

sorry i haven't been updating so frequently, things have been kind of crazy. let's see if i can do a quick recap of the past few days:

• the side effects have been subsiding. the brain fog hasn't been as strong, i'm not as nauseated as i used to be, and my appetite is coming back. unfortunately, the sleep is still what it is.
• friday i went to dc to visit my alex for the weekend. we got facials at the aveda institute and got cupcakes at red velvet cupcakery in china town, and went to a natural hair meet-up at a great italian restaurant, vapiano. they actually have a location in  new york city, so i'll definitely try to check that out. i did a lot of shopping =]
• my medication schedule was thrown off over the weekend. i definitely need to work on getting it back on track.
• today the doctor's office called, which completely pissed me off. if i called you last week to tell you that i'm having heart palpitations because of the medication, why would the nurse call me to see if the doctor called me back? this was four hours ago. the damn doctor still hasn't called me back.
• my mom's begun this extensive research on homeopathic remedies for fibromyalgia. she wants me to go see a chinese herbalist.

that's about it, in a nutshell.

savella: day nineteen

i can't stomach anything but soup. not even thick soup.
the brain fog has gotten intense.
the heart palpitations have been occurring more frequently.
i'm having hot flashes and sweats like a 60year old woman.
i woke up nine times during the past two nights of sleep.

guest bloggers are welcomed!

if you have a story about your struggle with fibromyalgia or have a witnessed loved one's struggle you're willing to share, please do!

i'm looking for guest bloggers, so any of your experiences with fibromyalgia you're willing to share, please feel free to let me know. 

last thursday at work, i wrote about my sleep-- or the lack thereof. i always talk to my mom while i'm at work, so the next day, i spoke to her and i wasn't doing too bad. at the end of our conversation, she said "stay strong, and i love you."

these are my words to live by.

beautiful you.

darrel mentioned that i should do a post about how i manage to do my hair. for some, this may be one of the easiest tasks, but for me, it's far from that.

i have full, curly, natural hair. lots of it. it can be a hassle to detangle and condition, and painful to straighten. there've been times it would take me close to three hours to do my hair, only because my arms would hurt so badly.

i've gotten able to manage my hair daily, because i try to do very little to it while it's in its natural state. i keep the tangles and knots to a minimum, and it'll only take me about twenty minute, give or take, depending on what i'm doing to my hair.

but the pain got so bad, and it's been so tiresome, that i don't even straighten my hair anymore. my arms burn. horribly. i'd have to keep my arms raised for hours; sometimes i'd cry because it was so much hair to get through, and i know i had to finish. i can't remember the last time i straightened my hair myself; i have to go to a salon to have it done professionally. it can cost me close to $50, so i don't have it done that often.

now, my hair is stretched. i need to condition, wash with conditioner (cowash), and twist it to stretch it out. this will definitely take me a few hours to get it all done, but it can be don't a little at a time, so it's not that bad.

tattooed you..

tattoos hurt, i know; i have four, and i'll soon be working on my fifth.

how is it that we can tolerate the pain of getting a tattoo, but flares feel like it's the end of the world?

sleep is the cousin of death.

is that why i feel dead every single morning?

monday night: i woke up at 2a, 3a, and 5a.
tuesday night: i woke up at 12:30a, 3a, and 4:30a.
wednesday night (last night): i woke up at midnight, 2a, and 3:30a.

it's not getting any better. i was so tempted to call out from work. i'm at my desk, feeling like shit.

i want to go home. now.

and i just got smacked with a heart palpitation. great.

"Tylenol and Advil are equivalent to taking three Skittles for your pain. I’m glad most people don’t understand." - nelle


her response was hilarious!!

savella: day twelve.

today was bad. really bad.

as much as i enjoyed my vacation, it screwed my up sleep schedule completely. last night and the night before, i couldn't fall asleep for anything. like, forcing myself to make an attempt to fall asleep around midnight, knowing damn well i have to be up before 6a.

work couldn't get any worse. brain fog was at an all time high, and the exhaustion was too much for me to handle. during my lunch break, i put my head down in the kitchen and cried a little. i eventually took a ten minute nap, which helped me continue with the rest of the day a little easier.

i'm forcing myself to fall asleep soon.

very soon...

mini vacation 2011

so darrel (the boyfriend) and i went on a little mini vacation! we spent a few days in stafford, virginia with my cousin, roxanne, and her husband, monty. we took the bolt bus down thursday night, and friday morning, we hit the ground running. 


chick-fil-a for breakfast, massages at massage envy, bowling, lunch at cheeseburger in paradise, an impromptu shoot, and a nap. we had every intention of going to see captain america, but darrel and i were knocked out, so we drove to redbox and got come movies: lincoln lawyer and rango.

saturday, aunt mil came over to surprise me, and we all squeezed into the sentra and drove for about four hours to virginia beach. tons of traffic! i got a light tan, we grabbed some pizza, walked the strip, and headed back to stafford.

sunday, monty made pancakes for breakfast. my cousins interrogated darrel for about half an hour, then we hit the road. hopped on the bus in dc heading for nyc.

i had a great time. i really needed that little getaway. i was damn close to pain free, which made this vacation a lot better. 

i tried to stick to my routine with my meds as much as possible. i woke up every morning between 5:30 and 6a to take the first savella pill. i usually take the last pill between 7:30 and 8p, but we were never home at that time, and i never took the pack of pills with me. friday night, i napped through my normal pill taking time; i woke up two hours later to take it, then ended up staying awake and watching movies for another five hours. 

and i took lots naps; between the buses, driving, and that one nap on friday, i got at least eight or nine hours of napping in. 

but none the less, we had fun, and for the first time in a while, i wasn't worried about pain.