sleep study day!

don't i look excited? my hair is now washed and braided, and i'm looking like a 90s r&b singer. at least that's one less thing to do for tonight's sleep study. i need to throw my pajamas and pillow pet ina a bag, shower, eat, and be ready to go by 6:30p.

it's snowing in new york city. this is strange for october. we have to drive through the slush just to get to the sleep lab.

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last night darrel and i drove-- well, he drove us to nassau county in long island to go to the cheesecake factory. i've heard about them for years and never tried it. the food was average, as in most chain restaurants. the dulce de leche cheesecake was average, too. slight disappointment, but darrel was so excited to take me since i've never been, and he said i had such a long week and needed a date. this week, i was in tons of pain. a lot of soreness in my shoulders and legs, and swelling in my fingers. when i have flares, i get extra bitchy and moody, but he kept his cool. i love him.

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now culture(d). is up on etsy. making bracelets tend to calm me a bit. sales have been going pretty ok, luckily, i'm not depending on this to make a living. here are ten new bracelets i need to take pictures of an post, but of course, the weather's preventing me from doing so. in the mean time, if anyone wants to check out the online shop, it's CisforCultured.etsy.com

i got a bunch of packages in the mail! lately, i've been getting at least one almost every day, and they're always beads, but not this time. one package was a pair of black knockaround. fort knocks sunglasses i ordered a few days ago. darrel bought me these in tortoise when i got out of the emergency room. two days later, i went back to get a black pair and they were sold out. i wear a ton of black, so i'm uber excited to put these to use.

another package was a surprise from my favorite sis, alex. we started making jewelry about the same time, and she sent me her newest creation, duafe earrings. the duafe, or wooden comb, is the west african adinkra symbol for beauty, cleanliness, and desirable feminine qualities. i can't wait to wear these. i've actually been thinking about getting a duafe tattoo..

my square also came in the mail today! i can now take credit cards on site, so if anyone sees me and wants to buy a bracelet, you don't have to go through etsy! that actually wasn't the purpose of me getting this: that will be revealed at a later date.

i'm tired and in need a nap, but of course, i can't take one. i should attempt to get some things done before having to leave. maybe some homework, because i'm definitely behind.

i know i'll have a very emotional post to write once tonight is over.

flaring.

i haven't had a flare in a pretty long time. a week or two maybe?

swollen hands, headache, sore and achy shoulders, not to mention my wrist. my body's throbbing and my stomach is killing me. i'm trying to fight through it. i have a graphic novel draft due on monday, on top of cleaning my basement apartment, making more bracelets, and taking the pics for the etsy site--which will be up by sunday night.

it's hard being in pain when your boyfriend's at a strip club, but that's a whole different story that i can't bare to think about.

dr. sury called. twice. first, she called a few days ago to change my appointment from friday to saturday, and that was fine. i had plans that i was definitely looking forward to, but this is more important. she called again tonight, trying to get me to come in tonight. the first thing that came to mind was having to wash and braid my hair in pain. luckily, my mom wasn't having it. she doesn't deal well with last minute issues.

on a brighter note, i came home to three packages! one was four strands of beads, another was my marc jacobs mini lock necklace, and the other was candles and a wallflower from bath and body works. and i did a little shopping at h&m during lunch.

let me get some cleaning done.

alternative medicine.

today we went to the chinese acupuncturist and herbalist. the whole day, i made jokes about my mom going back to her roots for wanting to take me. her coworkers had rave reviews about how the herbs and acupuncture has helped with there ailments, and my mom said she'd do anything to find what makes me feel better. so this herbalist. dr. chi's office was in a tiny room in a building in chinatown. as soon as you walk in, the scent of all of the herbs just smacks you in the face.

he gave me a contract to read and sign, which made me panic. reading the side effects of acupuncture and the wording of his contract freaked me out completely. after we established i was not interested in the acupuncture aspect of his practice, we went into an even smaller room and started the consultation. i told him about the fibromyalgia, asthma, migraines, anxiety, and lack of sleep; he asked a bunch of questions and wrote everything down in chinese. he checked my pulse on both wrists-- his finger movements reminded me of accordion playing. he wrote some more things down in chinese, then he started shuffling through the wall of drawers behind his counter. 

dr. chi gave me two bags of a mixture of herbs, which would last me for four days, along with very strict instructions on how to cook them. he said the cooking method is very important. he gave us an example: there's an herb to relieve constipation that needs to be cooked for five minutes-- if it's cooked for thirty minutes, you'll get the worst case of diarrhea.

these are some of the herbs he prescribed. i actually asked him to write them down for me, but he said he doesn't know their english names.

so these are the cooking directions (i'm writing it as it is printed, so excuse the improper spelling/grammar:

cooking for the 1st time: empty herbs from the bag in a (ceramic/glass/stainless steal) pot. and 40 oz. of cols water, cover the lid. high fire, bring to boil. turn fire to medium, simmer for 45 minutes. shut off the fire, and pour out the tea. should have about 10 oz. of tea. remain the herbs in the pot for the 2nd time cooking.

cooking for the 2nd time: add 20oz. of cold water into the remaining herb from the first time. high fire, bring to boil. turn fire to medium, simmer for 30 minutes. shut off the fire, pour out the tea. should have another 10oz. of tea. put in refrigerator to keep fresh for the next day use. 

drink direction:

drink the herbal tea 1 hour after lunch. or 1 hour after dinner (3 hours before bed time). never drink the tea on an empty stomach. always drink when it's still very warm. be careful do not get burn. never drink the tea when it's cold.

so we followed the directions and this was the result. this was absolutely the most disgusting thing i've ever ingested, but at least dr. chi put a brown sugar cube in the bag to cook with the tea.

my mom was prepared to dish out a hefty amount of money, but since i didn't get the acupuncture and only bough herbs, she only paid $21: each bag of herbs was $8, and he charged $5 to check my pulse.

i drank the tea about two and a half hours ago, which is why i'm awake writing this post. as exhausted as i am, i'm trying to follow these directions and not sleep until three hours after drinking it. i did some homework for my illustration class, made three bracelets, and started a new strand of waist beads before starting this. 

i'm sitting in my living room, watching chopped champions ondemand, in a world's worth of pain. my left foot is ridiculously swollen, along with my right hand. my left wrist with the cyst, hips, and shoulders are throbbing. i'm hungry, and everything hurts. i just want to eat and sleep.

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...

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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.

no more meds.

shocking, i know, but it's been a little over a week, i think, and i'm completely off of any medication given to me by the doctors. i honestly felt better when i was taking the savella, minus the nausea and what not.

the exhaustion has gotten to a new extreme. i always fall asleep on the train in the morning on my way to work. tuesday, i was so exhausted, i didn't even bother to get off at my stop. i was awake once the train got to penn station, but i was just so exhausted, i couldn't move. i got off at the next stop and walked back six blocks to my office.

last night, i took one of the rozerem sleeping pills dr. jhagroo gave me. my body despises sleep at night! you'd think that after taking a sleeping pill that once used to knock me out for three days, i would at least sleep through the night-- nope.

this is just getting too much for me to handle.

insomnia driven production.

tons of bracelets in the middle of a flare. my fingers are freakishly swollen now.

switching things up.

and i am officially off of savella. monday was my last day taking it.
 
now, you’d think i’d be done with meds for a while, right? wrong…
 
so i went to the neurologist about my sleep, dr. rozner. fyi: you don’t go to a neurologist for insomnia. i have no idea why jhagroo sent me to him, but i digress. so rozner was beyond confused as to why i was sitting in his office, but to not waste a visit to yet another doctor, he gave me the referral for the sleep study. he definitely did attempt to find the root of the problem. he asked about my daily habits and caffeine intake, and my constant migraines came up. i ran down the list of pills i’ve taken for them: imetrex, aleve, excedrin, prescription strength ibuprofen, etc. he said those are symptomatic medications, and that i need to be taking preventative medications.
 
my options were amitriptyline or gabapentin. sitting in his office, i’ve never heard of either medication; after his explanation, all i understood was “gabapentin will sedate you for about six to eight hours,” so that’s what i chose.
 
i did some research after my appointment:

amitriptyline is used for conditions like depressive and anxiety disorders, adhd, migraine prophylaxis, eating disorders, bipolar disorder, and insomnia. it’s also used in spondylitis for pain relief, the treatment of nocturnal enuresis in children, post traumatic stress disorder, tinnitus, chronic cough, carpal tunnel, fibromyalgia, vulvodynia, interstitial cystitis, irritable bowel syndrome, diabetic peripheral neuropathy, neurological pain, laryngeal sensory neuropathy, and painful paresthesias related to multiple sclerosis. typically, lower dosages are required for pain modification of 10 to 50 mg daily. some side effects are drowsiness and a dry mouth, weight gain, changes in appetite, muscle stiffness, nausea, constipation, nervousness, dizziness, blurred vision, urinary retention, insomnia, and changes in sexual function. some rare side effects include seizures, tinnitus, hypotension, mania, psychosis, sleep paralysis, heart block, arrhythmias, lip and mouth ulcers, extrapyramidal symptoms, depression, tingling pain or numbness in the feet or hands, yellowing of the eyes or skin, pain or difficulty passing urine, confusion, abnormal production of milk in females, breast enlargement in both males and females, fever with increased sweating, and suicidal thoughts.

gabapentin is used mainly for the treatment of seizures, neuropathic pain, and hot flashes., and can be used to treat migraines, bipolar disorders, and pain.  it provides significant pain relief in about a third of people who take it for fibromyalgia or chronic neuropathic pain. it’s also effective in reducing narcotic usage post operatively and is helpful in neuropathic pain due to cancer. it’s approved for treatment of focal seizures, partial and mixed seizure disorders. it can help with acquired pendular nystagmus and infantile nystagmus, menopausal symptoms, and can reduce pain and spasticity in multiple sclerosis. gabapentin has been prescribed in the mental health context. trials show that it is not effective as a mood-stabilizing treatment for bipolar disorder and so has no therapeutic advantage in having fewer side-effects over better established bipolar drugs such as lithium and valproic acid. it has limited usefulness in the treatment of anxiety disorders such as social anxiety disorder and obsessive-compulsive disorder, in treatment-resistant depression, and for insomnia. it can also cause weight gain. a trial found gabapentin ineffective for the treatment of idiopathic subjective tinnitus. it's most common side effects in adult patients include dizziness, drowsiness, and peripheral edema, or swelling of extremities, which these mainly occur at higher doses in the elderly. also, children 3–12 years of age were observed to be susceptible to mild-to-moderate mood swings, hostility, concentration problems, and hyperactivity. although rare, there are several cases of hepatotoxicity reported. it should be used carefully in patients with renal impairment due to possible accumulation and toxicity. gabapentin has been associated with an increased risk of suicidal acts or violent deaths. in 2009, the FDA issued a warning of an increased risk of depression and suicidal thoughts and behaviors in patients taking gabapentin, along with other anticonvulsant drugs modifying the packaging insert to reflect this. in july 2009, the manufacturer of gabapentin (pfizer) went to trial regarding the association between gabapentin and the increased risk of suicide.
gabapentin should not be discontinued abruptly after long term use. abrupt or over rapid withdrawal may provoke a withdrawal syndrome reminiscent to alcohol or benzodiazepine withdrawal. gradual reduction over a period of weeks or months helps minimize or prevents the withdrawal syndrome. side effects upon discontinuation of gabapentin that have been reported in medical literature include insomnia, restlessness, agitation, anxiety, disorientation, confusion, light sensitivity, diaphoresis, headaches, palpitations, hypertension, chest pain, and flu-like symptoms. in at least one case, abrupt cessation of a high dose of gabapentin triggered a seizure in an individual with no history of epilepsy.

that's a whole lot of shit; a little nerve wrecking, if you ask me.

dr. rozner wants me to take one 300mg capsule of gabapentin once a day for a week, then increase to two at bedtime.

today is day three taking gabapentin, and i'm absolutely hating it. it's written across my
face how exhausted i am, and this is only the beginning. 

and i'm in killer pain?! i swear i'm about to have another breakdown. 

exploring new methods.

so yesterday's appointment with krishnamurthy: it was a whirlwind, to say the least. 

i told her about the heart palpitations, the lack of sleep, and the hot flashes. she explained that savella boosts the endorphins, and those side effects are a result of that. the nausea and brain fog have only gotten worse, and even though the medication has been controlling the flares, i still experience pain when my pressure points are touched. i also have been having flares since monday morning. with taking all of that into consideration, she decided to take me off of savella. she lowered my dosage to one pill a day for about a week to gradually get me off of it, since i'll go through withdrawal if i stop taking it suddenly.

krishnamurthy is stressing this aerobic activity thing. she told me to walk for five minutes as soon as i get home from work to get it out of the way. according to her, i may not feel the results the first week or two, but i will.  i'll give it a try. my friend dana swears i need to do thirty minutes of yoga on the weekends, so i'll try that to. 

once the medication is out of my system and i get into the habit of exercising, after about a month or so, we'll decide from there if i need to try another medication, like lyrica or cymbalta.

i asked about "self medicating" using marijuana: from a medical stand point, she's totally against it. she said it's only a short-term relief, and people who use that method tend to not want to do anything, "amotivational syndrome" she called it. she also said it's a harsher smoke than cigarettes on the lungs. this is definitely something i need to think about. 

i'm currently at my desk, in pain. my legs have been going numb, off and on, since yesterday morning. i'm leaving work in about three hours to meet up with darrel to go to another doctor's appointment; this time, it's for the neurologist to address this lack of sleep issue. 

i just want to be better already...

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..

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..

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 =]

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*

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?

"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 update.

i'm alive!


so so sorry i've been gone. i'm trying to get used to the new savella and develop a routine with it.


here's a little more information on the savella (taken from webMD):

This medication is a serotonin-norepinephrine reuptake inhibitor (SNRI) that works by helping to restore the balance of certain natural substances in the brain(neurotransmitters).

Dosage is based on your medical condition and response to treatment.

To reduce your risk of side effects, your doctor may start you at a low dose and gradually increase your dose. Follow your doctor's instructions carefully. Do not increase your dose or take this medication more often than prescribed. Your condition will not improve any faster, and the risk of serious side effects may be increased.

If this medication has been used regularly for a long time, withdrawal symptoms (such as mood swings, headache, tiredness, sleep changes, and brief feelings similar to electric shock) may occur if you suddenly stop using this medication. To prevent withdrawal reactions, your doctor may reduce your dose gradually. Consult your doctor or pharmacist for more details, and report any withdrawal reactions immediately.

Nausea, vomiting, dry mouth, constipation, loss of appetite, dizziness, increased sweating, headache, or hot flashes (flushing) may occur. If any of these effects persist or worsen, tell your doctor promptly.

Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects. Many people using this medication do not have serious side effects.

Tell your doctor immediately if any of these unlikely but serious side effects occur: fast/pounding heartbeat, changes in sexual ability, decreased interest in sex, painful/difficult urination.

so i've bolded the issues i've experienced while taking savella. it's only been ten days; the last three days, i've been taking the 50mg dosage. i wake up in the morning and take it before 6am, then between 7:30-8:30 right before i get ready for bed. it helps me fall asleep a bit.

i tend to get really scatter-brained and foggy, especially at work, since that's where i am for the greater part of the day. and the nausea?! it's ridiculous sometimes! and i get extremely exhausted. i honestly do believe it's the medication. but i'd rather experience that than the pain of fibromyalgia. since taking it, i've been able to take every day as it comes. i was actually able to enjoy my vacation! i'll save that for the next post...

i just thought this was amusing. friday morning, i mustered up enough energy to get out of bed and into the shower. then get out of the shower. that's it. i laid in this position for about ten minutes, like i didn't have to get ready for work. i was exhausted, stiff, and in pain.

*i was about ten minutes late for work...

when you date me, you date my fibromyalgia.

diagnosed at seventeen, i can honestly say i remember every guy's reaction to hearing "i have fibromyalgia."

at first, i was reluctant to mention it. i was young and it was still very new to me. i had a boyfriend when i was diagnosed, and he stuck with me for a while, but we ended a few months after. the next guy i dated that i told about having fibromyalgia was in college. i was nineteen, and the flares were only getting worse and coming on a lot more often. he started questioning the constant migraines, and after two months, i finally told him.

"is it contagious?"

seriously dude; google it.

he booked it; ran for the hills. first, he said it was because i wasn't upfront with him about it, then he said it was because he was scared to lose me.

...right.

my cousin has some serious health issues due to an incident when she was sixteen. once i told her about this guy, she told me i need to let them know i have fibromyalgia just as quickly as i let them know my name.

it can be really hard to find and meet someone that understands how you're feeling and the constant pain you're in. i've dated a few guys, and i'll admit, i've frustrated the hell out of them. i know i frustrate my boyfriend now. i can't remember for the life of me how i told him, but he's dealing with it really well; a lot better than i am, actually. he's so open-minded and hopeful that i can and will get better. he drives me to and from the doctors, makes sure i take my meds, brings me dinner, pretty much everything i can't/don't want/forget/too weak to do.

he complains sometimes about different things, but i really can't get mad. this is all new to him. he doesn't know how to deal with someone being in the pain i'm in. when my flares get really bad, it breaks my heart for him to see me like that. we intend on spending the rest of our lives together, and he's well aware that's a life full of pain. i'm just glad i don't have to go through it alone.

i'm having throbbing pains roing through my arms. time for meds. time for bed.

summer days at the doctor's office no. 2

back home. it's baking in these nyc streets.

sonograms. i mentioned i was getting one, and someone automatically said "you pregnant?"

1. learn to speak correctly.
2. you don't have to be preggers to get a sonogram. it's used to get a diagnostic image. go read a book.

the first was of my abdominal area, with an empty stomach and bladder. immediately after, i drank seven cups of water to then fill up my bladder for the sonogram of my pelvic area. why are the jellies they use so cold? pop it in the microwave or something! please!

i'm not too sure of what they're looking for, really. i don't know if that's a good thing...

i definitely went to that dunkin donuts after for a bagel and iced coffee.

i met my new rheumatologist; dr aneesa krishnamurthy. she's a young indian woman, and i love having young indian doctors. *to me, they seem to be more into western medicine than the older indian doctors. so we talked for a while, she did the pressure point test, as they all do, and we talked some more. she sent me home with a print out about fibromyalgia and exercising (right), as well as some notes she wrote for me regarding medications (left).

she acknowledged the nortriptylin that was prescribed by my other young indian doctor, then she mentioned lyrica and cymbalta, which i've heard of in the media, and savella. lyrica can cause serious weight gain, and seeing that i've gained a noticable fifty pounds in the past four years, she said we'd save that as a last resort. she prescribed a savella starter pack (12.5 mg). i'm not too sure what that entails, but i'm going to pick it up from the pharmacy as soon as i'm done with this post. after two weeks of taking it, my dosage would be up to 50mg, twice a day. she also prescribed tramadol for me to take as needed when these sudden bursts of unbarable pain come about. the side effects are sleepiness and nausea, which i'm all too familiar with.

for my exercise, she wants me to start at walking for five minutes a day, and slowly increase. that shouldn't be too hard.

she also gave me some tips for my sleep:

1. set a regular bed time, even on the weekends-- give or take an hour
2. no naps during the day (this is a killer for me)
3. the bed should only be used for sleep and sex (her words)
4. if you can't fall asleep, don't lay in bed and torture yourself. get up and watch a little tv or read a book until you start to feel sleepy.

this whole day, i've felt weak and dizzy. my vision seemed cloudy, to the point where i was constantly blinking really hard (i'm not too sure what that's called). 

in the words of ace hood: same old shit, just a different day.

pharmacy bound..

*please note: this is just my opinion, i'm only speaking from experience.