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...

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.

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.

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.

upcoming posts.

these are a few things i want to explore and discuss as a fibromyalgia patient:

• living alone
• dating
• sex
• friendships/ having a social life

just a bunch of rambling thoughts in my head.

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.

good morning.

i'm up and ready to start my day. starving. beyond starving! damn this sonogram.

my back hurts. a lot. i can't even take a pain killer.

ughhh,,,

let me go shower and start getting my shit together.

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.

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.

i got this picture from nelle, a fellow fibromyalgia patient and a pretty cool brooklyn chick out in dc =]

emergency room blues.

not fibroyalgia related, but i had a little fall.

i honestly don't know how it happened. i didn't faint, my legs didn't give out, but one minute, i'm trying to open the storm door in front of my house for my three year old cousin, justin, and the next, we're both falling off a landing and down four steps. now, it may seem like it's not a big deal--it was only four steps--but i fell head first, banged the inner part of my left knee, and bruised both elbows, the right more than the left. and i chipped my pedicure on the way down. my little justin hurt his hand. he cried more than i did, which is expected since he's three, but once my sister ran into the house and brought him some ice in a ziplock bag, his question of "can i eat it?" let us know he'll be fine.

me, on the other hand, not so fine. my mom put me to soak in the tub with hot water and epsom salts. after about ten minutes in there, the headache kicked in, and that's when i decided to go to the emergency room. got there at 10p, left at 4:30a. the first three hours and twenty minutes was nothing but paperwork and ice packs. the next three hours and twenty minutes was a urine test, waiting, waiting, a cat scan of my head, neck, and spine, waiting, waiting, the doctor explaining that i had a concussion, more waiting, xrays of my knee and elbow, waiting, a cat nap, wrapping my elbow and knee and putting it into a brace, waiting, and more paperwork.

this is my second day home. yesterday was horrible. today's a little better. i took the brace off my leg and i'm trying to move around a little more since i have to return to work tomorrow. i'm just really sore right now. i really feel it in my right shoulder/back/rib area, if that makes any sense.

i'm going to feel this soreness for a while, but these painkillers will be my best friend, especially this weekend. more details on that soon...

did i really get the recommended eight hours of sleep?

wednesday, my doctor gave me sleeping pill: rozerem (ramelteon). i took it a few times and was knocked out for close to three days.

i didn't take it last night. i went to bed around ten-ish, woke up around six-ish. that's about eight hours, right?

i'm beyond exhausted. same shit, different day.

today's my first day back to work since wednesday afternoon, and i must say, i'm far from ready for it.

i'm ava, and i'm living with fibromyalgia.

pretty self explanatory, right? not so much.

symptoms started at fourteen, diagnosed at seventeen, and at twenty three, i feel like i'm in the shits. so what do i do when everyone swears that i'll get better, when i just feel like my life is one extremely long day? blog.

i miss going out. i miss having fun. i miss my friends. i miss being in a peaceful state of mind. i miss being pain-free.