sleep? what's that?

this weekend alone i've been feeling insanely sleep deprived. ugh..

when i saw the neurologist back in august, he gave me a referral for a sleep study. i finally saw the doctor this past thursday for the consultation. the doctors office alone freaked me out. the bed. the machines. all i could think was "am i really supposed to sleep here?"

dr. kala sury came in and looked me over: she checked my eyes and mouth, then looked up at the top of my head.

"is that all your hair?"

i was confused when she asked, but then she explained that it would be difficult to get to my scalp to perform the tests through all of my hair. it makes sense. she said i'd need to braid my entire head in cornrows.

she asked more questions, gave me my appointment date, and handed me a sheet of paper with instructions:

1. please arrive at the sleep center by the time instructed.
2. shower and wash you hair with shampoo and soap before coming in for the test, DO NOT USE any hair spray, gel, body lotions, cremes, perfumes or oils on your hair or your body. DO NOT ARRIVE with any make-up, nail polish, artificial nails, or jewelry.
3. men should shave their chin prior to coming.
4. in general, we request that you obtain a normal night's sleep before the test; however, your doctor may instruct you to do otherwise. please continue to take all your regular medications and pursue your regular diet, unless instructed by your doctor.
5. avoid napping after 12 noon on the test day.
6. please bring: your favorite pillow, teddy bear, pajamas, loose clothing, book, magazine.
7. avoid alcohol and caffeine (coffee, tea, cola, chocolate, etc) for 12 hours prior to sleep study as they will affect the accuracy of the test. no sedatives should be taken before the test.
8. since we need to record a minimum of 6 hours of sleep, lights will be out at 10 p.m. the test is usually over by 6:00 and 6:30 a.m.
9. eat before coming to the sleep center.
10. bring all medications you would normally take during the course of the test.

of course i have a problem with these instructions. i can't have naked hair. i understand why they say not to use anything, because it will make it difficult for the censors to stick to my scalp, but i have plans to go out the next day, so my hair has to be twisted up in a certain way, with product. so, my plan is to pre-poo and wash my hair, and try my hardest not to get product onto my scalp.

on the 29th of this month, i'm leaving work early to come home to prepare myself to spend the night in a sleep lab in long island city. i'll be bringing a pair of pajamas, my fuzzy socks, darrel's satin pillow case-- since i can't wear a satin bonnet-- and my lady bug pillow pet. darrel is going to drive my mom and i, because she's terrified of driving through that sections of queens. my mom is staying the night with me. she'll be in a room next to mine.

honestly, i'm scared. being in situations like these tend to bring on panic attacks, like when i was on the table getting a ct scan after my fall. that's the main reason i'm asking my mom yo come with me.

this post is looking like it's a lot longer than i anticipated, so i'm ending it here. besides, my hands are swelling and my wrists are killing me. i need to hit the sheets, and i have class tomorrow.

so this strep throat..

as you remember, i was in bed sick last week from wednesday to sunday. monday morning, i woke up, went to work, and ended up back home by 4pm. the coughing was ridiculous, and my mom just couldn't take it. we literally ping-ponged ourselves all over the east side of brooklyn, trying to get me to an urgent care center, and when that failed, we were on a hunt for cough syrup.

my mom called a pharmacist and was instructed to give me buckley's cough syrup. we tried every pharmacy in our area, including the one that told us to get the cough syrup, and absolutely no one had it; not because they were sold out, but because they just didn't carry it. an associate at walgreen's told us that we'd need to go to a caribbean store to find it, which it suddenly made sense because it's used predominantly in the caribbean. we drove at least two miles, from mill basin to east flatbush, to a korean food store where they sell a lot of caribbean food and products, and i bought the buckley's, along with a bottle of ferrol compound.*

anyone that knows buckley's knows how horrible this stuff is. it tastes like rubbing alcohol and vicks vapor rub, and looks like semen. graphic, i know. i'm sorry.

i took it a few times; nothing worked.

my mom got in contact with our family doctor, and he called in a prescription for a cough syrup with promethazine. it's helped a tad, but not as quickly as my mom would like, so she bought this stuff at the health food store.

another horrible-tasting cough syrup.

*the ferrol compound is still in the bag i brought it home in.

so sorry for the neglect..

i'm alive!

i'm just super busy with homework, since i got absolutely none of it done while i was sick. i definitely have a lot to share, so as soon as i knock this assignment out, since it is due tomorrow, i'll be back.

163.4

i stepped on the scale at the doctors office yesterday and thats what it read.

i honestly wish that there’s something else wrong with me that can explain this weight gain.

i’ve gained close to fifty pounds since the summer of 2008. something’s definitely not right.

i swear i can't catch a break..

i woke up with some kind of crazy sore throat.

damn.

life's supposed to be a party..

yesterday was a long one. i sent out an order of bracelets for my darling keeta in maryland, went to breakfast with darrel at one of the local diners, made bracelets for another order, one for my mom, and one for me to wear last night.

i'll start posting information for the bracelets soon.

last night i went to a little karaoke party for my friends's birthdays. i felt extra exhausted yesterday, but since i've gotten sicker i haven't seen my friends, so i really wanted to go. i left the house mentally prepared to handle the pain that would follow the next day.

i had a drink: about two shots worth of bacardi coconut mixed with pineapple juice. that got me a little tipsy-- i'm not a hard liquor drinker. i'm a wine and champagne type of lady.

overall, the night was fun: full of laughs. i love my girls to death.

today i felt so sluggish. i was doing pretty well for the most part: i drove around with my aunt for a bit, picked up the dogs from the groomer, went to the supermarket, and dunkin donuts. i was exhausted the whole time. as the day progressed, the migraine came on, and my head literally felt heavy. my eyes are red, which is really weird. and this damn cyst on my wrist is getting the best of me.

i should get to bed. tomorrow's a long day with work and school.

the nerve of my nerves.

on my way home from class last night, as i stood on the subway platform waiting for the a train, there are a couple of starving artists playing strings. they were damn good; in any other situation, they'd be quite soothing.

from the time i left work to the time i got to school, i had this really uneasy feeling; my breaths were becoming short and shallow. class went fine. great, actually. i was in my zone, drawing for hours, and there was really good energy in the class. for the commute home, that feeling showed itself again, and proved it was here to stay. on the train, my breaths became shorter and more shallow, and they continued as i got in the car with darrel and drove the rest of the way. by the time he pulled up to the house, i was extremely weak: he had to carry my bag to the house because it was loaded with sketchbooks and art supplies. i pressed my body against the door because i barely had enough energy to close it behind him, and as my mom asked me what was wrong, i broke down and cried. my legs got weaker, i collapsed in her arms, and i cried.

she just stood there, holding me.

and i cried.

and cried.

and cried.

she brought me into the kitchen and tried to get me to eat something; i had no appetite, i still could barely breathe. she tied my hair up in a bun, helped me downstairs to my basement apartment, undressed me, and got me into bed. she plugged in my humidifier, put on my white noise app, and that was my night.

11p, the typical fibro tingling came on stronger as ever, and i cried myself to sleep.

this morning, she crawled into my bed and held me some more. about an hour later, she called my job and left a voicemail for my office manager saying i wouldn't be in because i wasn't feeling well. her calling can either go pretty good, or really, really bad.

but if i can barely breathe to talk, what am i supposed to do?

i feel like i had ninety anxiety attacks...

--------------------------------------------------------------

the whole time my mom was with me last night, she kept saying she now has to take care of her husband and her only child. it really hurts my heart to see my mom have to go through all this, but i love her for being strong enough to cope.

now i'm in my bed; my legs are still numb, and i'm hungry. walking is the farthest thing from my mind right now because every single muscle in my body is sore. my dad is upstairs. i really hope his home attendant is coming today, because i really can't take care of both of us

i'll probably be on the computer between sleeping, eating, and crying, either watching hulu or getting some design work done.

evacuation; newburgh (i could've sworn i published this post; instead, it was in my drafts..)

i'm a pessimist that's watched far too many natural disaster type movies. with that said, i'm on my way upstate to newburgh.

it started with light what ifs between me and darrel, then my cousin, a katrina survivor, called and instantly put me in panic mode. then came a call from my eldest brother while we were having dinner at sea in williamsburg, asking what i intended on doing and if i wanted to come upstate.

my initial plan was to stay the night at darrel's and ride it out with him. i must admit, it might have been the stupidest plan, seeing that he's a whole lot closer to a body of water than i am, but it beats staying in the house alone.

my mom called my cell from barbados and left a voicemail as we were driving home. i didn't hesitate to call her back; i had no idea what to do. my phone bill isn't going to look too pretty next month. after telling her the different conversations i was having with my cousin and brother, she agreed that i should go upstate.

then another cousin called. she and her family live around the corner from me, and when she heard i was alone, she said "yea, pack your shit and go by your brother's."

so here i am: on the train, with a full bladder, going to newburgh. i'm honestly on the verge of tears because he latter part of today's been such a whirlwind, and i don't deal well in situations like these. what am i saying? i've never experienced a hurricane! jeez! i just hope i remembered my meds.

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.

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 =]

here's a sneak peek!!

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

more details coming soon!

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

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.

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. 

this young lady tweeted alex about my blog. when i diagnosed, i didn't have anyone. the support group at the hospital did absolutely nothing for me. knowing that i can help another fibromyalgia patient is all i need; it's an absolutely amazing feeling.

brOOklyn.

so my darling alex came to brooklyn! yay =]

this post has great potential to be really long; let's see how short i can make it..

friday consisted of cupcakes at my favorite place in the world, billy's bakery on ninth and twenty-first street, where i spent $30 on nothing but cupcakes and arnold palmers, then dinner at black swan in bed stuy. great place, great food, horrible mosquito bites from dining in their backyard. we had mussels, calamari, three types of mac and cheese, and fries.

  

we stopped at some random subway station to get her a metro card for the next day.

she was so confused; it was adorable.

saturday was probably the longest day of my life! i made us iced coffee and we ate the night before's cupcakes for breakfast, then we were out for forever. we hit up the new muslim spot on flatbush avenue for shea butter and all types of natural goodness. that was our first detour of the day.

after our natural-ness shopping, we hopped on the train and headed to the brooklyn flea in fort greene, where we bought matching tees for her, char, and i, cute little handmade bracelets, i bought a silk scarf, and she bought a leather ralph lauren belt.

then came the bus ride to thistle hill tavern in park slope for a late brunch. we rode through park slope, and alex fell in love!!

i googled best breakfasts in brooklyn, and thistle hill tavern came up. i must say, they're pretty damn good. alex had the speck and egg sandwich, which has prosciutto, tomatoes, and some kind of special sauce. i had the ham and grueyer sandwich; it's pressed like a panini and it has spicy pickles. i love pickles.

oh, and i had a mimosa =]

after brunch, we took a quick cab ride back to fort greene to meet up with nicky at habana for frozen margaritas. we all hopped on the train-- margaritas in hand-- and proceeded to reed space in the lower east side. nicky and i now have matching knockaround sunglasses.

detour numero dos was at babeland. pure comedy. alex was amazed by this huge rubber dick.

 
 

then came another cab ride to soho. double rL, the designer's market on prince street, scotch and soda, and supreme. we spent so much money!

now nicky and i have matching bracelets, too. swagged out cookin' hands.

and he taught this asian girl that worked at scotch and soda how to cook; she kept trying to vogue.

we split ways; nicky went to la casa de elLos, and alex and i went to bed stuy for her friend's rooftop housewarming party. that was an amazing view of my brOOklyn. 

yummy sangria; third drink of the day.

after about an hour there, my boyfriend, darrel, picked us up, and the four of us (his friend came along) went to buttermilk channel in cobble hill. yummy cheddar waffles and juicy fried chicken!! the bread service wasn't bread, they were popovers drizzled in honey. we got back home around midnight, after a thirteen hour day. 

sunday was her last day. i woke up and cooked, as i do every other sunday: mac and cheese, fried chicken cutlets, crackerjack shrimp, broccoli, and string beans from my mom's garden. darrel came, and we drove her to the megabus stop, the. to penn station to get on the amtrak. long story, don't ask. i was so sad! that was unnecessary though, because she'll be coming back up for the antiAchievers's shindig, then i'm going down to visit in september for that long jewish holiday weekend. 

it was ridiculous how much i was fighting sleep this weekend. the pain from walking and lack of sleep started to kick in while i was at work today. but that's what painkillers are for, right?

i keep saying how i miss my friends and i miss having a social life; alex's visit was very much needed. i love this chick to pieces <3


time for meds. time for bed.