it's been forever..

it definitely has!! it's been so long, i have to look back to see what i last posted about. the epitome of neglect..

i'm currently laying in bed with a migraine, fighting to write this post.

savella: things are going great. i'm not sick like i was the first two days; i've discovered i need to take it after a meal. the flares are definitely under control. i still get joint pain with the weather, and my hand's been swelling a lot lately, but that i can handle it.

so this broken arm; it's healed now and out of the cast. i'm in a brace because after five weeks without movement, i can barely support my wrist. i should be starting therapy soon.

my life's boring. there isn't much going on to write about. sorry =\

newness

sitting up in bed. might as well take this time to update.


*i'm craving frosted flakes. weird.



so here are the results for my sleep study.

i honestly don't understand any of it, until it gets to the conclusion: evidence of moderately severe obstructive sleep apnea. i got back to the sleep lab on friday to do the tests all over again with the face mask thing. this chronic fatigue and exhaustion is really getting to me.

my hands have been swollen for a few days now, but i can't stop what i need to do. i still have homework to finish for tomorrow and bracelets to make.

i'm finally getting the ganglion cyst taken care of. my doctor said it'll be drained, but my cousin says i need to have it surgically removed. who knows anymore.

i quit taking the herbs. i couldn't torture myself anymore. the herbalist said since i've had my condition for so long, i'll need to drink the herbs for a while. i don't have that kind of patience or strength, so screw it. it became unbearable to drink; i started throwing it down the drain once my mother cooked it for me. childish, i know. i'm an adult, i shouldn't have to do nonsense like that, on top of waste money to buy the damn things. i'd rather pay $35 a month on pills than $21 a week on herbs. i'm going back to the rheumatologist to talk about putting me on a lower dosage of savella. i actually had an appointment with her on wednesday, but i had to reschedule because i was so exhausted.

that's about it for now. i'm pretty sure something else will come up soon; it always does.

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.

right now..

in and out of sleep, feeling sicker than a mother. i'm surrounded by a mountain of snotty tissues, filled with yellow mucus. cold sweats, constant coughing, migraine, nausea.

darrel brought home a bacon angus burger from mcdonald's. i had to cut it in half and force feed myself just so i can take the amoxcilin. 

i called my manager while i was on my way home from the doctor. when i told him i had strep, he didn't even want me to come in for the rest of the week. understandable, strep is contagious and i sound horrid, but i'm definitely not complaining.

i had plans to go to dc this weekend to hang out with alex and my mini-muffin charleigh. so much for that..

ugh, i feel like poopie =[

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.

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.

natural living.

my mom called me at work the other day and simply said "you're going to stop taking the doctor's medications. i'm buying you things and i you're going to try it because i want you to feel better."

this is what she came home with. i love that woman.

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...

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

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.

"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. 

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...

savella.

 *please excuse the mirror images. that's how photobooth is.

so this is my savella stater kit. it was delivered to the pharmacy today. another $35 on meds, but at least i saved $97.99! (not very enthused)

it's divided into the days, up to four weeks. one in the morning, then one in the evening. it starts off with 12.5mg per pill for three days, then doubles to 25mg per pill for four days, then doubles again to 50mg per pill for days 8-28. then i have the 50mg bottle. (i obviously took the first pill)

typical side effects: dizziness, drowsiness, blurred vision.

the nausea right now is at an all time high. i don't know if it's the pills, or if it's just me. so on that note, i'm calling it a night.

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.

summer days at the doctor's office no. 1

i saw my primary doctor two weeks ago to discuss a few issues i've been having. i tend to keep a log of new pains and random medical questions for upcoming visits. the last list contained lyrica, marinol, sharp stomach pains, calmax (this expensive powder my mom bough for me to try to help me sleep), the nortriptylin affecting my sleep, and chron's disease.

he said:
lyrica and marinol: i need to see the new rheumatologist and see what she has to say about switching me to new medication, but he's heard of patients using marinol with great success.
sharp stomach pains: it can either be my ovaries or my appendix, so i have two sonograms scheduled.
calmax: he read the instructions, and said "all this'll do is constipate you."
nortriptylin: he prescribed the rozerem (see the post from monday, july 12th)
chron's: stool test. i think they came back negative..?

so tomorrow's the big day. i'll be back at the doctor's office. both sonograms tomorrow morning. i can't eat for eight hours before the first one, then immediately after, i have to drink four cups of water to do the other one. a few hours later is my appointment with the rheumatologist. thank grilled cheezis there's a dunkin donuts at the corner! (glee reference. yes, i'm a gleek)

time for meds. time for bed.