What Was I Thinking???

Moving forward

2012-02-08T07:24:00.003-05:00

so i had an appointment with the OB yesterday and i wasn't expecting anything special, except that it was my first internal exam of the whole pregnancy. ew. who wants an internal exam at 36 weeks pregnant??? not me. but they wanted to do it to check my strep status (affects whether or not i get antibiotics during labor) and what my cervix is up to. i guess i was so focused on the fact that i had to get an internal exam that i didn't even think about what she could say to me after doing one.

guess what? things are moving along! my cervix is 50% effaced which means the cervix is thinning out and i'm also 1cm dilated! that means a baby is coming!!!! now don't get too excited, i could be like this for weeks, but still...that means we're moving in to the next phase! see, my post about packing a bag wasn't that far off after all. guess what i was doing last night...packing that bag!

we did some blood work and other chatting too...baby's heartbeat was strong and going at a good rate. my belly also measured perfectly so things are as they should be! very exciting :)

we have an ultrasound this friday to check lil nugget's growth. can't wait to see her again!

the bag

2012-02-06T05:36:00.002-05:00

i really need to pack my bag for the hospital. all of the baby emails i've been getting for the past few weeks say that it should be done. it makes me feel guilty every time. people say to me "your bag is packed right?" packing the bag has been on my list of "things to do" for weeks. seems early to do it...i have four weeks left, but who knows when this baby is really coming?

i hate packing. i really do. i procrastinate this task every time i take a trip, no matter how excited i am about the trip itself. i've made some things easier over the years, such as having toiletries ready to go, but the rest of it is still sucky.

i think part of my problem is that i don't want to put some of my clothes into the bag because i wear them almost every day when i get home from work. this would include the black stretchy pants that still fit my waist (barely), pajamas that still fit (barely), and my maternity sweatshirt. i guess i need to bite the bullet and put them in. the other problem is a nightie or something to wear at night...i don't wear them for sleep so what would i pack?

the other issue i'm having is whether or not to breastfeed. if i do, i need to go spend MORE money to get nursing bras and tops. sigh...

i wish someone would just pack this bag for me. that would make me so happy. hey, maybe packing the hospital bag for other moms will be my million dollar idea. no one steal the idea! considering how much i hate to pack though, i'm not sure that idea would ever come to fruition.

maybe tonight will be the night that the bag is packed...

Day 250

2012-02-03T19:17:00.007-05:00

can you believe it? two hundred and fifty days of pregnancy. that's how long i've gone without sushi and wine and cold cuts and pretty shoes and my own clothes and normal body functions and normal body image (well some of these i was able to do/have in the very beginning, but not for long). i miss me! only 31 days left and i'm counting down!

by the way, the non-stress test today was excellent. lil nugget had the hiccups for most of the test which was making us giggle, but otherwise she performed well. i guess a bunch of other babies had the hiccups during the test today too, but hers went the longest. she's such an overachiever! we have an ultrasound next friday to check on growth.

we're having maternity pictures taken tomorrow...so exciting. i'm glad that they're being done before any stretch marks appear! the important things in life. we also have an infant cpr class tomorrow so that we can fulfill our "good parents" duty. putting the final touches on the room tonight including glider chair assembly, washing bedding, and hanging decorative things on the walls. yay!

here's a sneak peek of the nursery...

Way Back When-esday

2012-02-01T07:05:00.004-05:00

Thanks to my sister for this idea...it struck me two ways because we are in such a time of change right now. It's been 3.5 years since we started down the road toward having a baby. Lots of ups and downs in those years. Also, being 35 weeks pregnant makes me yearn for the "me" I used to know...or more specifically, the body I used to know.

This first picture isn't my cutest look but it was taken the day before I found out that I was pregnant. Lots of hope in my heart that day.

The second picture is the body I want back!

Little bits

2012-01-30T05:58:00.003-05:00

just a quick update on our not-so-little nugget... we had an ultrasound on the 27th and our little girl continues to be both an overachiever and a bit of a diva. she scored perfectly with 8/8 on her biophysical profile which means she's looking healthy. all of the sudden she has chubby cheeks! although with us as her parents, i'm not sure she was going to be able to escape cheeks like that. every time they tried to get a better shot of her face, she'd put a hand or a foot (!!!) in front of her face. funny girl! they believe she is measuring at about six pounds. her due date is still march 5th but we have a feeling that she'll be coming along a bit early.

she has been moving around quite a lot. i call it doing "the worm" as she makes quite large squirmy movements under my ribs that feel like a big worm. she's also poking at other areas of my belly, perhaps trying to be funny? or maybe just curious... she also gets the hiccups about once a day.

thanks to my parents and hubby for their help with the baby's room and the house over the past couple weekends. there was so much to do and we've knocked most of it out. i really needed help because my feet are swollen and i've been trying to keep them up. it's hard to get anything done when you're lying on the couch like a princess!

Tuesday tidbits

2012-01-17T20:22:00.005-05:00

A few updates on life lately:

We had our second non stress test (NST) today and baby girl performed remarkably. She's such an overachiever (wonder where she gets that from). The nurse came in the room and turned down the volume on the machine because her movements were so strong and therefore loud that they were irritating people outside the room. She asked if I had been counting movements...I laughed in her face. I said that I don't have to because the baby is moving all the time. Should be interesting when she comes out!
We had our prepared childbirth class this weekend and spent a couple days at the hospital where I'll be delivering. My thoughts afterwards were a bit surprising...I may actually try to avoid an epidural! I'd also like to avoid a c-section. I think that with my history of dealing with severe prolonged pain, 60-90 second contractions may not be that bad. We'll see how I feel on the delivery date and I reserve the right to change my mind, but it may be possible to do this naturally.
My ankles and feet are swollen again and I'm not sure it's going to go away without delivering this child. Ugh...cankles don't suit me! I noticed it starting during the class this weekend and eventually dragged a chair over in front of me so that I could put my feet up.
I've been gaining weight recently...9 pounds in the last two weeks! I think some of it is water weight but I'm not sure where the rest is going. Maybe I need to slow down on those chocolate covered donuts!
The pukey bug has hit my house...poor hubby is so sick :( I'm hoping and praying that it goes away quickly and never comes near me. Please please please go away! I took the day off so I could take care of hubby and keep the bug out of the office. Hope it worked. I ended up taking two naps and skyping with my sister while I was home which worked out well for me.
Our baby furniture came yesterday and I LOVE it!!! It actually looks like we measured things...ha ha. I'm so excited to put the finishing touches in and set everything up. I'll take pics afterwards and post them.
My new schedule at work started yesterday...now I'll get some time at the end of each session to do notes, calls, etc. Oh and a new NP will be starting within the week. I'll be training her until I leave. Nothing like a little more stress!
I went to see a third day care center today. We're leaning toward one place over the others but just have to make the final decision.

Well that's it for now...hope everyone's Tuesday was terrific!

First letter

2012-01-11T20:55:00.004-05:00

dear mommy and daddy,

i thought i'd write you a letter so that you know how i'm doing. we've really only been able to communicate through morning sickness, headaches, and other lovely maladies, so i thought i'd go with something more traditional like a letter.

it's wonderful in here! so warm and cozy, but i could use a little more space. i'm so busy growing and am very long, so i feel like i'm getting a bit squished. i keep bumping into something hard up towards the top...is that your rib? i kinda like tucking myself in there, but then something pushes back at me. is that you mommy? if i move away from the rib then i go closer to the bladder...your choice.

now that i can hear, i'm really enjoying the music you play for me in the car. i really love that justin boy! i especially like when you dance...because when you dance, i dance! i also like hearing daddy laugh. i can almost see his face getting red as he does it! one thing though mommy, i really think you need to clean up your potty mouth. i know i know, you're from new york and that's how they all talk, but do you really want my first word to be f*&k? i know you're trying to cut down on it, but i think you might have to work a little harder on that.

i'm loving your choices of food. the morning cup of tea is so lovely. the baked goods are awesome! i really like the berries and the oranges too! but i'm with GG on this one...you need to drink more water! i think we'd both feel better if you did. go ahead and take a break from reading my letter...get some water...take a nice big gulp...ok good mommy. thank you.

btw what's that sound i hear against my tummy in the evenings? what's that little massage i get each night? are those really kitty cats? are there really two? they're so warm and cozy, just like you. i can't wait to meet them...we're already friends, you know.

i know the past few months have been tough but we're almost through with the pregnancy part. i'm sure i'll miss being in your tummy, but i'm so curious about what things look like out there. are my bedroom walls really the color of butter? do i really get to sleep under pbk bedding? is my stroller really pink? is there really a turtle light waiting just for me? i'm so excited! don't worry, i'm not so excited that i'll come out really early or anything...i'll stay in here a little longer so you have time to get things ready ok? you hang in there mommy!

love,

lil nugget

ps - i can't wait to meet my new pals, matt and hailey! will you tell them i said that please?

58 days to go

2012-01-07T11:18:00.002-05:00

could that be it? 58 days? i remember when i thought the 40 weeks of pregnancy would never come to end and now it's only 58 days away? wow. it's an exciting feeling but also scary. each day i think to myself "how is this going to be different once we have our little girl?" and that thought can come during my commute, my workday, grocery shopping, illness, fatigue, etc. i'm looking forward to the changes...good and bad.

there is so much to do. forms to fill out, classes to attend, clothes and blankets to wash, odds and ends to buy, pediatricians to interview, day care centers to visit, thank yous to write (these seem to be neverending), appointments to go to, tests to complete, visits to be made (trying to squeeze in social engagements now), and the list goes on. people tell me to relax...is that possible? actually sometimes it is possible because the fatigue at this stage is simply overwhelming. i almost fell asleep during a manicure yesterday. i would have been okay because it was shellac and wouldn't have smudged, but i bet my manicurist would have found it odd.

i need to organize baby clothes. i think i should organize them by size and then by type. is that right? i have bins of clothes from my sister that need to be put away somewhere. i'm trying to wait until the dresser gets here, which should be in about 1-2 weeks. we have gotten such wonderful clothes from friends and family and i can't wait to see our baby girl in them :) i even went against my own rule the other night and bought three outfits for her. well i had kohl's cash that i had to spend or else it would expire! i can't let that go to waste.

my house is so quiet right now...i'm appreciating it while i can.

a little funny

2011-12-13T18:36:00.002-05:00

sometimes i forget i'm pregnant. is that weird? am i the only one this happens to? there are moments when i'm SO pregnant that i can't help but know that i am, but in other moments it sneaks up on me.

early in the morning is one of the times that it happens the most. i'll get undressed to shower and catch my reflection in the mirror and stop short because the belly surprises me! how can that happen after all these months? i just laugh and move on...

i was in target tonight buying cold medicine and cough drops (and a couple christmas gifts for others) because i just got my second pregnancy cold. yuck. my purchases were being rung up and the woman behind me said "how are you feeling?" i thought to myself "oh no, was i sniffling? how does she know i have a cold? do i look that bad? who is this woman? a co-worker? a patient?" finally i realized she was talking about the pregnancy and i tapped my stomach and said "oh this?" nice mom...i refer to my baby as "this." anyway this woman had no idea about the cold...she was just being nice and asking about the pregnancy! i laughed at myself all the way out of the store.

Christmas musts

2011-12-10T16:24:00.003-05:00

what is is about the holidays that make us feel like we HAVE to do things? we make ourselves crazy trying to do every single thing and then end up being grinches because of it. yesterday my sister wrote this post about going to visit santa and trying to tackle the mall. hysterical...maybe not for her, but for the rest of us reading it. well here's my own little "christmas must" story...not quite as bad because i wasn't doing it with twins running around, but still annoying.

last night, hubby and i were going out to dinner with friends. these friends have children who we love and i wanted to make cookies for them. i also wanted to make some extras to give to a couple neighbors who i like. but yesterday got a little busy for me and i got tired, so i took a nap in the afternoon with my kitties and thought "well i'm pregnant, i'm allowed to nap." when i woke up at 4:15 i realized that i needed to go to the grocery store to buy cookie making stuff. what made it awesome was that rush hour had already started so a quick trip turned out to be longer.

anyway, when i got home i needed to dive right in because i only had two hours. so i started making the first recipe and found out that it didn't call for cocoa which i knew i had, but baking chocolate! i hadn't gotten that at the store, but was able to find some in the cabinet (still good). of course it needed to be melted and then cooled before it could be used in the recipe...so convenient. so i threw it in a bowl and into the microwave. the first round didn't melt it so i put it back on for another minute.

then i heard a sizzling and popping sound...wtf? i reached in and grabbed the bowl and burned myself. daaaamn that hurt. after using a pot holder to get it out, i noticed that the bowl was seeping liquid out of the cracks that had formed in concentric circles around the bowl. i had used these bowls in the microwave before, not sure what the issue was. problem was that i was afraid the bowl would blow and send shrapnel into my belly! i considered putting it in the fridge but thought that would almost certainly create an explosion, so i just kept my distance for a while.

the chocolate still wasn't melted so i had to scrape it into another container and melt it again...then cool it. while the chocolate was cooling i realized that the whole batter had to be cooled for THREE HOURS before i could actually bake the cookies. um what? why don't they tell you that shit from the start of the recipe? well i finished the batter and put it out to cool on the porch and considered my next step.

this time i read through the whole recipe and decided on snickerdoodles. with hubby's help, we were able to make all the cookies and put them in a cookie tin with christmas colored peanut m&ms. our friends were happy and i'm thinking that they ate a couple on the way home from dinner.

just finished baking the chocolate crinkles and they're delicious...but are they really worth all this hassle??? why do i feel that i MUST make cookies like this? it's not relaxing or enjoyable at all...just one of those christmas musts, i guess. this is the same way i felt last week when i was scrambling to get christmas decorations up before my family visited. what, did i think that they would leave if my tree wasn't up? that they would disown me if i didn't have a christmas tablecloth on the table?

what are your christmas musts?

Baby showers

2011-12-08T06:28:00.014-05:00

That's right, I said baby showerssssss...I got two! I feel so lucky :)

The first shower was on Thanksgiving weekend in NY and my mom invited her friends and neighbors as well as my friends who live on Long Island. I can't believe people were able to come because it turned out to be a really busy weekend for all who were there. We had lots of yummy breakfast and brunch things, homemade cookies, and cake...oh and a yummy pink punch. Ha...when I tried to eat certain cookies, the powdered sugar kept falling on my tummy and larger than life boobs. Too bad I had a dark dress on! My friend, who was about 36 weeks pregnant at the time, was commiserating with me on the powdered sugar issue. People were so generous with their gifts and with their love. It really did touch my heart. Jeff wore a pink shirt which really was a hit with the girls.

The following Saturday we had the second shower in Framingham. My friend R was generous enough (or crazy enough) to offer her house for the event. Mom, Sis, MIL, and SILs worked with R in organizing the shower and did a fabulous job. I can't even believe all that they did. There were all different kinds of pink candies, a beautiful cake made by SIL (three times actually) that replicated the pattern on the bedding we had chosen, and delicious food. Favors were homemade by Mom and SIL and everyone loved them!

So many people were there from all different parts of my life, from elementary school all the way up to a woman I became friends with just in the past couple years. I loved seeing everyone all together and interacting...that's always fun for me. Again people were so generous with their time and love and we got some beautiful gifts. I love that so many people are making homemade items from food to books to blankets to clothes. Reminds me to get back into that kind of thing.

I tried to give a little speech when opening gifts was over but started to cry before I even started. I decompensated fast so my voice and hands were shaking through the whole thing. But at least I was able to share my feelings and hope I was able to let people know how special I feel. We have worked hard and have waited a long time for this little one and it warms my heart to know how many people are looking forward to meeting her. I gave gifts to the ones who had worked on the shower, little figurines representing them and the baby, as well as pink frames that I hope to keep updated with her picture. Everyone scolded me for giving gifts at my own shower but I wanted to!

A quick little note about the baby...We had an ultrasound the day before the second shower and all looks good. They said she has big feet which means she is going to be tall. They also said her head is a little big and asked if anyone in my family has a big head...my dad does. Not sure if that part bodes well for me during delivery! Anyway she is a little ahead in terms of growth...little overachiever. We may have a February baby if she keeps going this way!

Pregnancy bits

2011-11-22T06:28:00.004-05:00

this post was written in my head between the hours of 2am and 3am this morning...then edited at 5am when i woke up again ahead of my alarm. fun times. it was probably better then but i refused to get out of bed to get my computer!

things i'm looking forward to at the end of this pregnancy

1. wine

2. wearing my jeans again

3. normal sized boobs

4. being able to bend over uninhibited

5. sneezing without ligament pain

6. normal GI function - well as normal as i can get

7. sleeping - i can hear you laughing, but i'm serious. once the baby comes i can send jeff to get her half the time. he can't help me now with my peeing, eating a snack at 2am, lying there wide awake at 3am for no reason...that's all up to me! i swear i'll sleep more once the baby comes.

8. having our baby girl meet her cousins and our friends' kids

things i'm NOT looking forward to at the end of this pregnancy

1. floppy boobs

2. floppy belly

3. dealing with shopping carts and a baby

4. figuring out how to change a baby in a public restroom

5. lifting the carrier and stroller - damn my wrists are going to be a mess.

6. being those people on a plane with a screaming crying baby

7. keeping the cats out of the baby room which used to be their room - yes my cats had their own room!

i'm sure there are more bits to share, but i just can't think clearly.

Cawfee tawk

2011-11-20T08:58:00.002-05:00

OK I just had to do this one because my sister did it and I love answering questions like this. Check out her answers if you get the chance...

1. How did you meet your husband?

We worked together right out of college. I still remember what he was wearing when I met him...dark blue dress shirt. I thought he was cute but at the time I also thought he was a snobby rich kid because he had accepted the position from from Spain where he had gone on his European tour after finishing college. So I dismissed him for a while, but eventually he won my heart!

2. What is the one thing in this world that calms you down instantly?

Being close to the ocean. I love hearing the waves and being able to walk on the sand. We just took our babymoon in Naples on the Gulf coast and there's nothing better. All of our vacations end up being in beachy places because of my love for the ocean, even though I shouldn't be out in the sun!

3. What makes you feel more "put together?" A manicure? Pedicure? Great outfit?

A manicure for sure. I always feel like having my nails done makes me look like I have my life together. Maybe I should get a manicure more often, but I don't. Hmmm...

4. If there was one thing you could have for Christmas, what would it be?

I want my family in one place...I mean permanently. In our 20s it was cool to move away and do our own thing, but now I want everyone back together. I want to be able to go over for dinner or run out to the stores together. I want our kids together too.

5. Do you wear contacts or glasses? Would you get Lasik if you could?

Glasses sometimes...I need to go get my new prescription. I wear them at night while I'm driving or if I'm far away from something like at a concert. No need for Lasik. I think glasses are sexy.

6. If you wake up in the middle of the night, do you lay in your bed trying to go back to sleep? Or do you get up and try to accomplish something?

I totally go back to sleep. There's nothing important enough to get up for except if someone needs you. If I got up it would wake up hubby and that's not fair anyway.

7. What is the most annoying thing in your house that you would totally get rid of if you wouldn't get caught?

Hubby's mail...and to be honest, I could get rid of it and he would never know. I'd also get rid of our dining room table set. It was free and I liked it at the time, but it's just not my style. But I'm keeping it for now because I'll be fine with it getting touched by sticky fingers and have things spilled on it. I wouldn't even care if the baby started chewing on it or coloring all over it...all the more reason to get a new one when she gets older!

Nicknames

2011-11-17T05:56:00.002-05:00

i tried writing this post in my head at 2:30 this morning. i had to get up for a snack so i guess i didn't have much to think about. anyway, i think it was better at 2:30...guess i'm more creative at that time of the morning.

since we found out we were pregnant, we tried to figure out a good nickname to call the baby. we didn't know the sex of the baby until 18 weeks so we needed something neutral. a friend had used "flutter" which i thought was adorable, but i didn't want to copy them. in the weekly pregnancy emails, they kept referring to the baby as some sort of food when talking about measurements...olive, walnut, kumquat, etc. that was too hard to stick to since it changed each week. so finally we came up with "nugget" or more fondly "nugget of hope." this stuck and i've found that people refer to the baby as "nugget" even when not talking to us which i find funny.

recently though it seems as though nugget has taken on a new nickname...TROUBLEMAKER! it started in her early ultrasounds when she wouldn't sit still for measurements or when she would throw her hand in front of her face when they were trying to get a good look at her face. what a diva! so the tech said the baby might be a troublemaker...then jeff said "just like her mother!" very funny jeff. anyway, these two sentiments keep coming up during ultrasounds as she is quite a mover. then i went for a checkup at the OB on tuesday (all is good by the way) and the baby wouldn't stop moving enough to allow us to measure her heartrate. again the OB called her "little troublemaker"...with affection of course.

we might be in for it.......

Babymoon!

2011-11-10T07:26:00.007-05:00

today's the day that i never thought would get here...jeff and i are leaving for our babymoon! for those of you who don't know, a babymoon is a trip taken by new parents to have some time together before the baby arrives. typically they take this trip during the second trimester so that mom is still comfortable and they can have fun. we're just taking a short trip, squeezing it in before the holidays start.

jeff and i will be going to naples, fl which is a place we visited in may. normally we wouldn't repeat a vacation spot so soon, but we really loved it and had such a calm sense of peace when we were there. we'll be staying at the same hotel too, a waldorf property...oooh la la! it had two pools and is right on the beach which is on the gulf, so calm waters. we're able to take morning walks right on the beach, dipping our toes in the water along the way. being on the gulf, we can watch the sunset every night. naples has a pier that goes far out into the water too so you can walk out to the end and watch the sunset there too. last time we had a dolphin keeping us company. there are also wonderful restaurants and shops in downtown naples that we love to peek in to. i can't wait to be back there.

little updates...i'm finally gaining weight the way i should be which is a relief. unfortunately some of that comes in the form of water weight. i noticed cankles last night! my feet ached so i should have known. it's very reminiscent of the swelling i experienced in my left leg two summers ago after i hurt my knee. hey, at least it's symmetrical swelling this time! a rep at work who has been following our struggle to get pregnant brought us a little gift yesterday...little maryjanes made by uggs!

Lost and found

2011-11-06T19:21:00.004-05:00

um okay, what the hell happened to my bellybutton? what is THAT?

a couple nights ago i looked down and realized i had lost my bellybutton. i couldn't find it anywhere. i thought eventually my pregnant belly would push it out and i would be left with the dreaded "outty" but i never thought THIS would happen. i now have a bellyslit instead of a bellybutton. that's sexy. really, very attractive.

photo credits go to my mom...fashion credits go to me for the sweater/jammies combination. that's sexy too.

Catching up

2011-11-02T07:22:00.002-04:00

happy wednesday! i love wednesdays because it means that i'm halfway through my work week. i definitely work towards my weekends. i enjoy seeing my patients but it's draining at times and i need my weekends to refuel. i feel like my focus is very split these days due to the pregnancy so i'm not sure i'm doing my best work. anyway, happy wednesday.

we had our 22 week ultrasound last week and all is good. the little nugget weighs a little over one pound now...what a big girl! all measurements were within normal ranges, heart rate was in the 140s, and she was moving around a lot. they said she was photogenic but a little uncooperative. that's how she was at the last one too...little diva. we tried to get pictures but they're very blurry...not sure if that was due to the technician or because the nugget was moving around too much. it was like a dance party in there! she's moving and kicking around a lot which is fun to feel.

no new developments on the pregnancy side...still having a lot of tummy issues but am able to eat a bit more these days. i've even returned to cooking this week so it seems that i have a bit more energy and tolerance for funny smells. i did eat half a pork chop the other night but felt that it smelled like feet the whole time. i can't wait to eat normally again! i tried non-alcoholic wine for the first time this weekend. yuck...it was so sweet. i talked to a guy at the wine store last night and he was saying that he just doesn't get the concept of non-alcoholic wine, why would you do that to yourself? and i said "that's because you've never been pregnant." he just sort of looked at me blankly and left me alone. anyway maybe i'll try it again, maybe i'll just wait four months until i can have a glass of the good stuff.

my sister came up to visit a couple weekends ago. husband was away and she didn't have her family with her. we realized that it hadn't just been us on a visit for a very long time. we had so much fun...ate good food, danced and sang in the car, and acted silly every chance we could get. she did two of her jewelry parties and made some good money! she got to meet my crazy friends and coworkers which was also a treat, i'm sure :) my party was so much fun but boy was i tired by the end of it! she and my sister-in-law did all the clean up...sending a big thank you their way for that. sister kept talking to my belly, even in public. that guy at the airport must have thought we were nuts. speaking of the airport, when i dropped her off and drove away i started to cry. guess i'm turning into my mother! we just had a really good time and it never feels like we have enough time together. we're going to have to figure out a way to shrink the east coast so that boston and baltimore are next door to each other.

husband and i are going away on a brief babymoon a week from tomorrow. we can't wait to get back to the warm weather. we're returning to a spot we visited earlier this year and loved...naples, fl. looking forward to that calm feeling that only a vacation and being on the water can bring you. i can't wait to walk on the beach in the morning. the restaurants and people there are also wonderful. it's going to be a great time.

Things no one told me about pregnancy

2011-10-21T16:26:00.001-04:00

i've decided to keep a list of the things that have surprised me about pregnancy. you would think that i know a lot, having taken a nursing course on mother AND baby as well as being an aunt to twins and sister to a woman who shares almost everything about herself. apparently not. i started this list early on, probably around 6 weeks and now i'm at 21 weeks. you can almost sense the progression in the statements below:

the severity of morning sickness. wtf?! if i had known what this is truly like, i wouldn't have done it. i'd rather pay $40K for a kid than do this again.
explosive diarrhea. enough said.
prenatal vitamins make you sicker. wtf?!
what is with the menstrual cramps?
my sense of smell is uber-sensitive. things i used to love now make me gag...garlic cooking, pasta, coffee, toasted bagel, cologne, soap from bath & body.
i have no desire to eat...nothing appeals to me...but if i don't eat then i'm nauseous. well i'm nauseous no matter what i do so i'm SOL i guess.
i have to eat smaller meals. i just can't fit in all the grub i used to eat!
when i sneeze or turn over, i feel like my abdomen is ripping apart...damn ligaments.
i can't eat meat. i'm a meat lover and i can't eat meat! i can't even smell it. it makes me gag.
pregnancy is the best diet i've ever been on...i've lost 10 pounds!
the whole "is this baby or is this fat?" question is hysterical to me. i ask myself every day.
why so many headaches?
i'm either hungry or full, but never comfortable in between.
i have to eat all the time!
the constipation is ridiculous. i celebrate my poops the way my 3-year-old niece and nephew celebrate their poops. it's like an olympic event now.
never miss a pooportunity.
when i get up to pee during the night, i feel like i'm drunk. one of these days i'm going to fall.
i have zero energy. i'm creating a permanent ass indent in my couch.
i cry at everything now. i may start embarrassing myself soon with the tears.
it seems like everyone is pregnant with me. i am truly touched by the excitement and happiness from others.
when i get up too fast i almost black out. no fun.
i do my best thinking around 4am, usually after the 3rd or 4th pee of the night.
i have little ability to make decisions so registering, planning parties, and choosing a baby name may be a tad difficult for me.
feeling bloated already and i have a million weeks to go...should be fun.
the baby movements never felt like gas as people promised it would. gas feels like gas. the baby feels like a little person trapped in a balloon, which essentially it is.

Vegas baby!

2011-10-17T06:28:00.004-04:00

so here's the story of how we found out we were pregnant...

jeff and i had finally gotten to the "trying" stage of this whole shebang...it had taken 2.5 years to get here and we were excited to finally get going. i was testing my temperature each day and using ovulation predictor kits to get the timing right. i didn't want to be this analytical, but i felt like our window was small during the time that i was off my medications and able to feel good. i finally got a positive sign on my opk (a little smiley face) and wouldn't you know, jeff was on a plane. i texted him about my disappointment and he was sad. luckily he came home two days later and we think this is when we were able to conceive. thank goodness for patient eggies!

a couple weeks later we were due to go to vegas together for my nurse practitioner conference. the night before we were leaving, i was wickedly nauseous. we both chalked it up to being nervous about the long trip (my tummy doesn't do well with flying). it got so bad the next morning that we almost canceled the trip (good thing we didn't because there was a sports celebrity - tim thomas, bruins goalie - and the stanley cup on our plane!).

i was sick to my stomach all week and finally took a pregnancy test on june 24th - positive! we were together in our fancy hotel bathroom (the venetian) and i saw it first...said "um babe"...he turned around and we looked at it together and were shocked. we thought we would have much more trouble getting pregnant and we had had so negative pregnancy tests before so i think we assumed this one would be negative also. craziness! i'm not sure we believed we could actually do it!

i had to tell someone so i texted my sister and told her to get on skype - now! she thought i was nuts and just missed her kids so she put the camera on her. i said no no i need you to see! so she got behind the camera with them and i held up the pregnancy test stick to my camera so she could see. she was so excited and started to cry. i think i was jumping up and down. we decided to keep the secret from everyone else so that we could try to tell them in person...those stories will come later. i want to write them down so we can tell our little nugget someday. oh yeah, we decided we needed to nickname the baby so that we had something to call her so we called her "the nugget" because she was so tiny. and it stuck!

now "vegas baby" has a whole new meaning to us!

I'M PREGNANT!!!

2011-10-14T15:56:00.005-04:00

there...i finally said it...I'M PREGNANT!!! phew. i've been waiting to say that for a looooong time. i'm 19.5 weeks pregnant now and have known since day 26! it's now day 138 for those of you who are keeping track. it's so hard for me to keep a secret but i wanted to make sure everything was good before announcing it to everyone. i've kept some notes through this time of secrecy and plan on all sorts of blog posts. for now i'll just post a recent picture or two and just celebrate being able to share our secret.

dreamin

2011-09-21T07:50:00.003-04:00

okay so my dreams have been very weird lately. sometimes i remember them more than others. i figured i'd jot them down so that i can look back and giggle. maybe you'll giggle too? nah, they're not that funny.

dream one:
i got called in to work the dinner shift at houlihan's, which i hadn't done in many years. i was having trouble remembering table numbers. all of the staff seemed to remember me, but i didn't recognize them. i remember thinking that they looked like the girls i worked with as a nurse, but that didn't make sense. eventually i was told that i wasn't getting any tables because i had been canceled (that sucked since i had just come in). i went to change to go home but couldn't find my shoes. i eventually chose between someone's gold and white flip flops and chose the white ones (neither were very cute). i left the restaurant and started walking through the mall (houlihan's was not in the mall when i worked there). then i realized that i had forgotten my purse so i walked all the way back but couldn't find it. i was very upset but left anyway because they were yelling at me. (we used to call these houlimares when we worked at houlihan's)

dream two:
after shopping in sears for new clothes (gotta love sears clothes), we sat down to a big round table at red robin. my mom and jeff had stepped away from the table and had left their cell phones behind. i realized at the next table over, and old college roommate was celebrating her birthday and all of my old college roommates were at her table. one was even at my table and snuck away to sit at hers (as if i didn't notice). my table was mixed with family, friends, and co-workers. all of the sudden i looked outside and there was a tidal wave coming at the restaurant, knocking people over as it came. i screamed and looked around for jeff and mom but couldn't find them. i couldn't call them because i had their phones. i paid the check, which was over $500 so that the waitress wouldn't get stiffed (because that's important at the time of a tidal wave). i went to get my raincoat (also important, gotta protect yourself from the water) and stopped on the way back to wish my old college roommate a happy birthday. she had feathers in her hair and was dressed in the colors of red robin. eventually everyone came back to the table but no one would pay their share of the check (bastards...i'll never do that again).

dream three:
jeff and i were on vacation somewhere sunny. we had wasted the first day of vacation in travel and the second day of vacation doing silly things (don't remember what, probably sleeping). so i remember feeling like we had to do something good on this third day before we went home. we eventually crossed a bridge and found our way to the place we had been looking for (whatever that was). jeff joined a swimming class with a bunch of old asian people. i pulled him out of the water saying we had to go on a bike ride. we eventually ended up at a buffet. (we just booked a vacation so i assume this dream came from that)

thirteen thoughts for thursday

2011-09-15T07:25:00.003-04:00

thanks bec for this idea...i wanted to write a post today but couldn't seem to get organized!

1. i don't like getting up early four days in a row. i know most of you do this all week but it's just not for me.
2. i hate making my own lunch.
3. i love drinking tea in the morning but i don't love to rush it.
4. i hate showering because doing so means that i have to do the whole routine afterwards...make up, blowdrying hair, etc.
5. i love to sleep and look forward to sleeping every day. as soon as i get up in the morning i calculate how many hours there are until i can sleep again.
6. i love late night tv. this totally contradicts my love for sleep though. and it really gets in the way of waking up early.
7. my mother, brother, and sister and her family are coming at christmastime and this makes me so happy that every time i think about it, i get tears in my eyes.
8. i want to see a lot of movies and can't figure out when i'm going to do that - contagion, the help, moneyball.
9. i was the only one seeing patients at my practice this week and for the first time i wasn't scared of being the only one there.
10. i love how my kitties come to say good morning when i get up each day. okay okay, maybe it's because they're hungry, but i prefer to think that they've been waiting for me all night.
11. i really should be making my lunch and blowdrying my hair instead of blogging, but we all know how i feel about that.
12. since school started the rush hour traffic really blows. my commute has doubled in time and that just means that i have to get up even earlier. see #1.
13. i'm going to the bc/duke game this weekend and i don't even have a bc t-shirt to wear. i went there for four years, you would think i'd have a t-shirt!

what are your thirteen thoughts???

September 11

2011-09-11T09:54:00.002-04:00

On this day I try to remember those we have lost, those who fought to save others, and those who came out safely but surely scarred.

The events of September 11th changed the path of my life. Shortly after that day I lost my job in the technology sector and decided that I needed to do something that would make a difference in people's lives. I decided to enter health care which led me on the path to graduate school and now to my job as a nurse practitioner. Now I am able to help others every day and I feel as though I am making a positive difference in the world.

The events of September 11th also led to my engagement and marriage to my husband Jeff. He tells me he asked himself "What am I waiting for?" or something along those lines. We've been together now for 12 years, married for 8 years, and we have built a life together.

In my life, the events of September 11th led me to better places and better people. So of course, I'll never forget.

Lists

2011-09-07T07:25:00.004-04:00

Things I love

Sleeping in
Helping people
When husband cooks me dinner
Hugs
When family members visit
Hailey & Matt
Duke & Daisy
A clean kitchen
Eddie Murphy hosting the Oscars
That the Yankees are in first place

Things I hate

Early mornings
The mail pile
Negative energy
Doctor's appointments
That my insurance doesn't pay 100% now
When husband is sick
When I'm sick (not yet, cross your fingers)
Writing progress notes
When people are late
Blow drying my hair

Things I don't care about

Boring stories
Car commercials
Politics (I'm with you Bec)
Repeating myself (Revised: originally said politics...guess i really don't care about politics!)
Coupons
Putting away my clothes (this could go on the hate list too)
Paperwork & receipts (that's 2, sorry)
My co-worker's stories (just one co-worker, she repeats herself a lot)
Church (sorry Mom)
Real Housewives

Thanks to my sister for her lists idea!

For just a moment

2011-08-10T19:55:00.002-04:00

i was driving home from work today and realized how lucky i am. i have achieved so many of my goals and dreams plus even more than i knew to ask for. i have a wonderful husband, comfy cozy house, a job where i get to help people every day, fun and loving family, fabulous friends, two fuzzy kitties...

i think about some of the people in the news today and it reminds me to be thankful. there's a mother who accidentally ran over her daughter in her driveway and killed her. what grief she must be feeling. then there's the woman who didn't return from her snorkeling trip with her boyfriend...he doesn't seem to be bothered by it, but her ex is beside himself. there's a patient of our practice who is in his 40s...he and his wife are both diagnosed with different rapidly progressive terminal diseases. what did they tell their children? the pain and horror that is present in these stories is almost too much to bear.

for just a moment i have to be grateful for what i have...and hold on tightly.

Dreamin

2011-07-03T08:30:00.002-04:00

well i had a disturbing dream last night...although it was somewhat comforting at the same time. as you know by now, jeff and i have been trying to get pregnant for a long time...like close to 3 years. during this time, i've never had a dream where we've been playing the role of parents. it was almost like my mind wouldn't let me go there...wouldn't want to get my hopes up! anyway this year we've been feeling good and stable, even been "trying"...that is, when we're physically in the same state. apparently jeff's company doesn't understand that we kinda have to be in the same state during this "trying" process.

on to the dream...we were new parents with a brand new baby. what i remember most is that both of us were exhausted. so exhausted that we were making poor decisions and forgetting important things. like putting the diaper on the baby! haha...jeff fell asleep holding the baby and she (yes SHE) peed on him, which woke him up and he went and put a diaper on her. then in the next scene, i fell asleep with her on me and we woke up with poop all over. in fact it had spread so far that she had it in her hands...which as you know always end up in the baby's mouth. EWWWWW!!!! so then i got upset with jeff because he hadn't put the diaper on right. what a mess! i guess practice makes perfect...we'll get there.

i'm just happy that i had a dream where we were parents...gives me hope :)

Time flies

2011-05-07T16:17:00.013-04:00

i'm just taking a look back at the blog and realized that the last time i posted a picture of this tree was april 2009. at that time, things were unraveling pretty quickly. i was entering a particularly bad time in this little voyage i'm on. i actually quit my job shortly after the pink tree post...my boss didn't let me but he did let me cut down my hours. after flaring pretty badly in june of that year, i started on high dose steroids and we all know what happened there. yuck.

amazing what a couple years can do...i'm feeling SO much better now and pretty much look like myself again. i can do most things by myself and have a fair amount of energy. i'm even working out at a gym! we're still trying to have children so i did wean off of methotrexate again but did not wean off of anything else. i'm trying to be careful to avoid upsetting the balance. i really don't want a repeat of 2009 thank you very much. i'm at a good place and would like to keep it that way!

some words of thanks to my husband for being patient and helpful and comforting through these difficult years. here's hoping the coming years will be much more pleasant for both of us!

prenatal stuff

2011-04-05T20:21:00.003-04:00

so i'm a little out of practice. two years ago i had all of this preparation/prenatal stuff under control. met with my OB/GYN, met with my high risk OB, met with my rheumatologist. i've done none of that this year. i also had a checklist...folic acid - check, discontinue meds - check, menstrual cycle review - check, important hormones - check. but now it seems as though i forgot all that i knew before.

so i figured i better catch up on things. i began reading a fertility book that a friend passed along. i'm getting caught up on the menstrual cycle and all pertinent hormones and surges and all that shit. it doesn't matter how many times i learn this darn thing, it just doesn't stick. i better hope i get pregnant easy.

it occurred to me yesterday that if we're going to start "trying" then i better start taking my folic acid. i had been on it all along because when you take methotrexate, you take folic acid. but now that i'm not on methotrexate i stopped the folic acid (actually folinic acid if you're really keeping up with things). duh, better start that up again.

when i was looking for my new folic acid tonight, i noticed there was a prenatal vitamin too. oh i guess i better take that one...forget the folic acid i'll just do this one. you would have thought that the secret to world peace was inside that bottle. first of all it cost a fortune (if you consider $12.99 a fortune). then it was wrapped in plastic without one of those nice perforations to help you open it. then there was a safety cap. then it had a seal over it that you couldn't poke through with your fingernail. then it actually had cotton inside! what the hell is in these things???

and then the dreaded moment...seeing how big those damn vitamins are and smelling how bad they smell. am i really going to be able to choke these down every morning? maybe not. good thing i bought that fruity folic acid :)

birthday notes

2011-04-05T09:16:00.006-04:00

hubby and i think that cards are a funny thing. they're great to receive and some are very touching or funny, but they've gotten so expensive! they're fabulous for a couple minutes, but then they add to the clutter in the house. i've been trying to figure out a way to use them in a different way, so i thought i'd share some of my favorite quotes from this year's cards. they are a little strange out of context, but like i said i'm picking my favorite parts. these are my little treasures.

From Hubby:

You make me a little crazy sometimes.

I want to fall in love so deeply with you that, even when it's not all fun, I can look at you as I do now and say, as I do now, "Yes, you're the one."

From Mom:

Happy Birthday to a responsible, dignified, cultured, mature daughter. (there's a joke on the inside)

If we lit a birthday candle, not for every year, but for every kind word you've spoken, every caring deed you've done, every life you've ever touched, the room would be filled with a radiant glow. (this is a good life goal to strive for)

From Dad:

You are loved. More than you'll ever know.

From Sister:

Sisters...with our own world of negotiations, truces, pacts, secrets, and looks of shared understanding united by a million everyday moments that became a lifetime of sharing.

Only sisters can know that sticking together works for almost anything life can throw at us. That we belong to each other in a way that we can never belong to anyone else.

From H&M:

For a wonderful aunt (i just love that i get to be an aunt to these two wonderful little people...their handprints were traced inside the card)

From Aunt Teena:

You can't always get what you want, but you sure as hell can complain to anyone willing to listen. (guess that's what my blog is for...)

the puffer

2011-03-26T08:56:00.003-04:00

when i go to the gym, i basically mind my own business. i don't look around too much (might fall off the treadmill if i do that and i don't want anyone looking at me), i don't talk to people i don't know (unless i have to and plus i want to be left alone), and i don't make funny noises (unless it's an accident - oops!).

well there's this guy at the gym who makes all sorts of noises and it's freaking me out. my sister was recently telling a story about a guy in her pilates class who grunts through the class, while sitting right next to her. my guy puffs as he's exhaling when he's lifting...you know that sound that men make when they're trying to be macho but really they're just lifting too much weight? my guy does his lifting, makes his puffing sounds, and then on the last rep he lets out this big weird sound. this guy looks like the boss from office space...you know that skinny boring guy? between sets he prances around and goes and gets a drink from the water fountain (last time i'll be using that, thank you very much). well yesterday i realized that all these sounds he's making while working out are probably similar to the sounds he makes during sex! ewwwww!!! i don't need to be hearing your sex sounds at the gym!

i told jeff this story and how i think people are also too free with their nakedness at the gym (i happened to walk in to the locker room as a naked woman was bending over right in front of me). he told me that the men sit on the locker room benches naked! ew! why would you sit on the bench naked? this is not your home people!!! be a little more careful with your nakedness!

a wish

2011-03-21T21:27:00.004-04:00

i want to run. i don't want to go anywhere in particular, i just want to run.

i was on the bike at the gym the other day and was watching a girl run...she was running fast! she had great legs and a great butt (a great tan too, but that probably wasn't from running...unless she was running outside). i think if i could run, i could have that butt too!

i wish i could run. i wish i could run like forrest. it's not that much to ask really.

it hurts to run though. i can't breathe when i run. but i still want to run.

maybe tomorrow.

SUCCESS!

2011-03-09T21:50:00.003-05:00

for the first time in over fifty years, there has been a medication released for the treatment of lupus...Benlysta. this is also the first medication that was developed specifically to treat lupus. what a milestone. it's not the most effective drug or the most tolerable, but at least it's there. it means that people are paying attention. it means that people care. what it really means though is that now other companies will begin development on more medications for the treatment of lupus and other autoimmune diseases.

it's a huge step, a huge success for the patients and families of those with lupus.

seize the day?

2011-03-06T08:30:00.002-05:00

i was thinking about this yesterday...people tend to say things like "seize the day" or "live for the moment" or "live for today." well what if today sucks? what if waking up in the morning means pain or upset stomach or sadness? it's not like every day sucks a lot, sometimes it's just a little. i saw something once that said that people with RA spend the day waiting for the night and the night waiting for the day. both day and night bring their own challenges. it's rare to go through the day without feeling bad so you look forward to getting into a comfy bed and waking to a new day. but it's also rare to sleep through the night because of pain and whatever else so it becomes unsatisfying.

yesterday i realized that most of the time, i'm living for tomorrow...because maybe tomorrow will be better. maybe i need to come up with a new cliche for myself? "live for tomorrow" or "seize the next day" or "wait for the next moment." hmmm somehow they don't have quite the same ring.

Workout wear

2011-02-06T12:01:00.002-05:00

the gym is an interesting place for fashion. now i'm no expert since i just started going again, but in the three times i've been there i've seen some interesting things. first of all, i think gym fashion is different in the suburbs. people are older, people don't care, people have no fashion sense, whatever it is. i've seen people working out in:

jeans
sweaters
cardigans
black dress socks - well one was black, the other gray
sweatbands - not the cool celtics ones either
big ol' tank tops that show way too much on the sides
little richard simmons shorts
bright green velour highwater pants
snow boots

well i didn't want to be one of these fashion mishaps, so i went looking for some new gear. yesterday i saw a really cute tank in a store in the natick collection...the rich people side of it...and the tank top was $52!!! at least it had a little bralette built in so i'd get more for my money, but really? i ended up getting things at kohl's, the fashion mecca of the suburbs. so the question is...how long will it take until i'm wearing one of the items listed above to the gym???

Flying

2011-02-04T08:57:00.005-05:00

just got home from a weekend trip and have a few bones to pick with the airlines and terrorists. first of all, whose fault is it that i have to take my shoes off in security...that reid guy who tried to light his shoe on fire? what a jerk. it's a total pain in the ass for me to take my shoes, or in this case boots, off at security because my fingers don't always work. if they have all this technology, shouldn't they be able to see inside my shoes???

also, whose fault is it that i have to put all my fluids/creams/soaps/etc. in little bottles? pain.in.the.ass. apparently the rule is 3.4 ounces or 100ml... i forgot that my hand cream was in my purse and had to give it up...brought a tear to my eye because i spent too much on it and it is the one thing i've found that keeps my hands from cracking during this glorious winter. i made the guy go back into the trash can and tell me how big the cream was...FOUR ounces. i almost asked him to squeeze a bit out and then hand it over, but i already knew that wouldn't count.

i got my first body scan on the trip home. i had to hold my hands over my head like i was the criminal...whose fault is this one? the underwear bomber? sooner or later his little mishap is going to make it so that we have to take our underwear off in security too! imagine that!

well after a couple days in security, we finally make it to our gate where we find twenty-something other people waiting. our plane was really empty which was awesome because we could upgrade to emergency row seats for free (they cost $10 each if you choose them online when checking in...another stupid rule). we start boarding the plane and the girl in front of us has a rolly bag, purse, and a shopping bag with a suit in it. the attendant stops her and says she has to check her bag. she asked to hang the suit, they said no. finally she gate checked her rolly bag. but when we got on the plane there was so much space! it was stupid...they could have let her bring all her stuff on. it used to be that your purse didn't count as a carry-on. whose fault is this silly rule?

overall the airline did a good job and our flights were on time and all that, but these other rules have got to go. what do you think?

Getting back to it

2011-01-23T18:36:00.006-05:00

okay well i've never been a gym rat. we can all admit that. the closest i came to a gym rat was when we were going in the early mornings before the wedding. i had to get my arms in shape for that strapless dress! after the wedding, i slacked off. i joined 3 or 4 gyms over several years, faithfully and paid the fees every month, but rarely went. i always found a reason not to go...usually it was that i'd rather sit on my ass on the couch and watch TV. ha! well then came the year from hell when i couldn't have worked out if i tried. i couldn't even get a sneaker on my left foot for about three months!

however now i'm ready to take that giant step back into the gym and start working out again. jeff belongs to a gym near the house so i thought i'd try that one. we went today so that i could take a tour and sign up and he was going to sign up for training sessions. well "jimmy jack cash" did his hard sell for like an hour...btw that's his wrestling name...and we ended up with some good deals. i'm going to have one training session a week and then go work out on my own on other days. they even have machines that are made to be easy on your joints! i tried to emphasize my concerns about working out especially since some muscle groups like my wrists are so weak due to non-use. he promised that some of the trainers have experience with RA and i promised that i'd come back and find him if i wasn't happy. oooh i'm so tough...not like i can beat him up...yet.

cross your fingers that all this makes me better and not worse!

my addiction...the pill

2011-01-17T08:13:00.002-05:00

today is a big day. today is a day that i'm struggling with. i have a problem...an addiction. i don't want to give up the pill. it makes life so much easier. it makes my body better. it makes my periods easier (i have terrible periods). it keeps the pain away. it gives me control.

but alas, you cannot get pregnant while you're taking the pill (well you can, but there's not much of a chance). gotta get my body back on a regular cycle if we're thinking of babies. the thing is, except for one year, i've been on the pill since age 17!!! when i took that last pill this morning, i held it for a minute in contemplation. i'm really going to miss it.

bye pill :(

act one, take two

2011-01-07T21:21:00.002-05:00

okay, well the first time i started weaning off of methotrexate, it was october 2008. we all know what happened with that one. this time i started weaning off of it in september 2010 and as of today, i am officially off of methotrexate!!! woo hoo! that stuff freaking killed me this time around. glad to have it off of the list.

so now i have to wait for three months for it to leave my system. then we can start trying to conceive. timing happens to coincide with our trip to hawaii in april. TMI? too bad!

Holiday cards

2010-12-07T21:42:00.002-05:00

what is the deal with holiday cards? why do we all make ourselves so crazy over these things? what is the point? i guess the point is to make sure other people see that we sort of have things together in our lives...together enough to choose the "perfect picture" or catch phrase or whatever and send it out to 100 of our closest relatives and friends. i think the move to photo cards was really for people with cute (or not-so-cute) kids or crazy people who love their pets a little too much. because really, do you want the other pathetic people to plaster their faces onto cards and send them out? not so much.

well i begged a friend to send me a picture that he had taken of me and jeff, then cropped and enhanced and whatever else you're supposed to do on iphoto, then made my way through 875 cards on tinyprints.com and finally made my selection. after having a small heart attack when seeing the total, i figured it was worth it since this card would let 40 (it's all i could afford) of my closest relatives and friends see that things had returned to normal with my face and our lives. so i pressed confirm and let it go. i received the cards yesterday along with their square envelopes...extra postage envelopes (after the catalog promised rectangular envelopes). the extra postage is 17 cents more on top of each stamp! and they're not even holiday stamps! sheesh. and no, i don't have holiday return address labels either.

by the way, the rheumatoid arthritis has finally come in handy...pun intended. now i have an excuse to leave a personal note out of each card and to use labels instead of hand-written addresses. yeah suckas!

so sorry if you don't get a cute little note or any hand writing at all...sorry if you don't like the picture (blame steve and iphoto)...sorry if the stamps suck...but happy holidays!

it's been a while

2010-11-03T22:17:00.004-04:00

i've been scolded recently because i haven't been posting...it's really because i didn't feel that there was much to post. i've been feeling good for the most part. i'm continuing to wean down on the methotrexate and today took 5mg via injection, which means i've decreased by two thirds! the plan is to get off of it for good, but even if it's temporary that's better than nothing. other than that, i've been having some trouble with my neck and often feel like something is getting caught or stuck when i turn my head. i had an x-ray which looked okay but we are going to schedule an MRI since i'm still having trouble. the neck stuff is leading to bad headaches as well so that's not so fun. my acupuncturist took good care of me last night though...makes me actually believe in that stuff!

today was a hard day at work. i found out that one of my young patients was found dead by her husband this morning. it appears that she overdosed but we don't know for sure. she had two small children who are now left without a mother. i spent a lot of time with this patient...trying my hardest to get her to wean down on her medications. she was taking high doses of narcotics, thankfully not prescribed by me, and was living in chronic pain. having dealt with chronic pain, i took special time with her and tried to pay attention to any clues she was giving about her psychiatric state. pain like that can really mess up your head...can take the most stable person and make them suicidal... i talked with her on the phone, saw her in our office, talked to her providers and pharmacists, made suggestions to try to get her help. it wasn't enough. i'm sad tonight for her and for her children and for her husband who will never get that image out of his head. my collaborating physician said i did everything right and did my best, but if someone's dead did you really do your best? i know there are factors that are out of my control, but could i have done more for her?

i chose the work i am doing so that i could help people, so that i could be there when someone was hurting, so that i could heal the pain and the sadness. i think i am doing that and am proud of the work i do. i spent an hour with a couple at the end of my day, counseling them about the early-onset dementia that the man has...providing care and wiping the tears. i think that spending this time with them showed me why i do what i do, made me want to come back tomorrow. but i am sad for this patient...i am sad that i won't see her again...i am sad that i don't get another chance to help her. RIP KP.

Womanly things

2010-09-05T12:32:00.002-04:00

OK, since i blew up last year, i've been having difficulty getting bras that fit. i don't think i'm a size that currently exists in the universe. i finally got two or three that fit when i was bigger but now they're not really cutting it. so i've been on the quest to get proper fitting bras.

for those of you who don't know, bra shopping doesn't tend to be a pleasing experience. here you are in a dressing room under bright lights, half-naked, and trying to squeeze yourself into a bra. and for some reason that i do not understand, bras are wound around the hanger, tucked under two or three hooks on the hanger, and the straps are adjusted to the shortest possible spot! wtf? so now you're half-naked prying the bra from the hanger, trying it on, only to realize that you have to adust it...pull it off...now you're half-naked trying to adjust those little plastic bits. for some reason, those dressing rooms are always too warm so now you're overheated, half-naked, trying to adjust those little f'ing plastic bits. by the time you get that damn bra on, you're sweaty and gross and don't want the bra on anyway!

now try to do all this with arthritic hands...the hangers, the hooks, those plastic bits...over and over until you find a proper fitting bra. well, this is why i've been wearing awful bras because this whole experience sucks for me!

you'll be happy to know (or maybe not) that i finally found a bra that fits. now i'm off to buy them in every freakin color so that i don't have to do the sweaty dressing room bra dance anymore!

next is jeans...and shoes/boots...ugh...

so...

2010-08-15T21:24:00.005-04:00

it's been a while. i know that. there's not much to write. plus i'm just too tired to write. i've been more tired than usual lately, not sure why. i'm not sleeping well at night which doesn't help the issue. i need to be exercising more which will help with sleep but i'm too tired to do it, thus perpetuating the cycle. wow that's a big word to use when i'm so tired! haha... i've started to decrease my dose of the methotrexate (shit i have to go do my shot!). also decreasing the dose of the steroid. probably shouldn't be doing both at the same time but i don't care. tired of being on the steroid. decreasing the dose of methotrexate starts our journey for the second time towards trying to have a baby. gonna be a long road...weaning off for conception will take nine months because of the dose i started at. who knows where i'll end up?

going to spend a few minutes with jeff before going to sleep...he travels again tomorrow. early day for me too...starting at 7am with patients. not my favorite time.

hope you're all doing well. hugs :)

oh here's my new favorite thing!

Just wondering

2010-07-19T20:37:00.003-04:00

damn, just wrote a whole long post and it deleted by accident...sigh...well, here's a shorter version then...

i made another visit to the pharmacy tonight. not sure if you remember, but i switched pharmacies a few months ago because cvs kept making mistakes with my prescriptions. so i switched to target...only to find that they would make mistakes each month as well. i try to be careful and check everything before i leave, but really i'm wondering why someone else isn't doing this step before i get there?

i ordered this round of refills on friday, left time for the enbrel to ship (learned that lesson last month), and called today before i went up to target. she said everything was ready so i headed up there. when i got there, i had to tell the guy my name like five times...maybe i should bring a card next time...and he brought up my medications to the desk. i asked to check them. i'm no fool. well there were three enbrel syringes. um, what? how is three syringes enough if i need to inject it weekly and there are four weeks in a month? the pharmacist said "i was wondering about that"...well why didn't you say something? come on now... well i checked everything else and all was well.

i'm wondering if i should let them know that i'm an NP. would that get me some sort of VIP status? would that force them to doublecheck my meds before i get there?

one good thing about the visit is that target does have a new program that you can sign up for...and i did. if you fill 10 prescriptions, they give you 10% off in the store. i'll be using that!

one final note...if someone is going to a pharmacy, that means they are sick or are caring for someone who is sick. be kind. be sensitive. go the extra mile...or at least go the mile that is outlined in your job description. the last thing a sick person needs is to arrive at home with their meds only to find that something is wrong (or worse, to take the wrong dose or wrong medicine) and have to return to the pharmacy. there is no energy left for that.

Mother to others?

2010-07-17T14:54:00.003-04:00

i was out doing errands today and was in the mess that they call a parking lot at my mall...trying to get over to the burrito shop. i stopped to let a dad (ben) and his little boy (blake) cross over (dad waved then little boy waved...so cute) and they ended up in front of me at the burrito shop. the boy was probably only a few months older than my nephew. while we were waiting, blake and i played peek-a-boo around daddy's legs. when they left blake said bye to me and smiled...dad did too.

the question i have is...if i don't have my own children, am i destined to be that freakishly nice woman who plays peek-a-boo with your children when you're not looking?

Acupuncture

2010-07-13T21:14:00.010-04:00

a few people have asked me about acupuncture so i thought i'd post a little about it. i go once a week now and really don't look forward to it (hate sitting still) but always feel better after i've gone (relaxed, more centered). my acupuncturist is a former nurse so we get along well. she does a different treatment each time, usually something for RA or pain, but sometimes other things. she'll throw in a needle to "calm" me or to clear my liver (she's always mad because my liver pulse is bad from the meds). sometimes i accuse her of closing her eyes and putting in the needles wherever they land! just kidding...she's really good. she also "bleeds" me (pokes a hole and draws the blood out through a cupping method) every couple weeks, usually when one of my hands "break." it actually does help with the pain, better than meds do.

tonight i snuck out my camera phone and took a couple pics. there are needles in my thighs and left foot in these shots.

note the fresh pedicure!

close up!

Creativity people!

2010-07-08T20:38:00.004-04:00

a big part of me really wishes that people would learn to be more creative...or more sensitive...or just a little bit more understanding. this week i have heard more about the kids i should be having or the pregnancy that should be occurring than i have in a long time. i called the gyn to make an appointment and the lady says "is this for your annual?"...no..."then are you pregnant?"...um no...but thanks for your sensitivity. we were having drinks and apps at a bar tonight and the guy next to us starts to talk to us...he says if we're living in the suburbs we should have kids. and i say "well if it were that easy..." with a smile. then he proceeds to say it like four more times and each time i try to respond nicely. i swear if he had said it one more time, i would have given him my whole freakin story. sheesh! so people, use some creativity when you talk to me next time!

anyway...you know what, since i don't have kids or a pregnancy to think about i was able to go out with my husband tonight and have drinks and sushi and yummy shit. yeah!

this all caps off a rough week when i was really depressed on a couple days. some days it just hits and there's nothing i can do to help it lift. eventually it does go away, but when it's here it sucks. i realized that at this point i'm more afraid that i won't be able to take care of kids than i am about actually getting pregnant. i'm just afraid that i'm not healthy enough. sobering thought...

off to watch some trashy tv and cheer myself up! oh here's a pic to cheer the rest of you up...the kitties like my linen closet, so if you ever stay here and use a towel now you know where the black fur comes from :)

what a week!

2010-06-09T08:02:00.004-04:00

most of the time these days, i don't think of myself as a sick person. i can usually get past whatever is bothering me. sharp contrast to last year so i consider myself lucky. but yesterday i was at acupuncture and i realized that i hardly go a day without something going on. as i was going through the week and a half since i had last seen her, it became obvious.

Friday - left hand "broken" - last acupuncture appt
Saturday - sick to my stomach, elbow swollen
Sunday - okay
Monday - knee began to hurt
Tuesday - knee was bad
Wednesday - knee made it hard to walk
Thursday - okay
Friday - okay
Saturday - migraine
Sunday - migraine
Monday - right hand "broken"
Tuesday - right hand "broken" - acupuncture appt

i mean really, three good days out of all that? my acupuncturist is good, but how can she focus with all that going on? i'm not trying to complain or get sympathy. sometimes i don't document what's going on with my body well enough. just thought i'd throw it on "paper" to see how it turned out. i should note that my last migraine before this most recent one was only two weeks earlier. they've been coming more frequently which is really annoying. i need to make myself my own patient!

what a day

2010-06-03T17:57:00.003-04:00

i don't know, is it a full moon today???

this morning i broke my favorite wine glass. nothing fancy, just a stemless white wine glass but nooooooooooo!!! and no, i wasn't drinking wine this morning. i was actually cleaning up before my cleaning lady got here. ironic that i made a mess while i was cleaning ;) and why the hell do the cats like broken glass so much? it's not like i dropped a big ol' tuna fish on the floor!

well then i got myself out to work and my car got hit by a rock on the way. all seemed okay until i tried to clean my windshield and the driver's side wiper just flew off! there it went... it was okay at the time because it was sunny, but i knew it was supposed to thunderstorm on my way home from work.

so i race off this afternoon without doing any notes from yesterday or today (not that i want to recall ANY of those appointments without a glass or two of wine in me first) and went to target to get a new wiper. let's keep in mind that i can never get these f'ing things on by myself and my husband is out of town. sweet. i go into target and get my #19 rain-x wiper and then take the long way back to the register so i can get my lip gloss and tea (necessities, along with the wiper). as i'm checking out there's this huge crack of thunder, so loud that i thought target was falling down around me (the horror).

i race out to the car with impending doom around me. no rain yet...phew. maybe i can make the 10 minute ride home without rain. i'm praying to God at this point, although i don't think he was listening as he was busy making thunder. it starts to sprinkle, i can handle this. except the douche in front of me had no balls and it took three cycles for me to get through a light. grrr... i'm about halfway home when the skies open up and i have no choice but to pull over in a dangerous spot.

so now i have my hazards on and am praying no one hits me because a broken wiper is bad, but a broken car is worse. it lightens up a little so i make my move...holding my breath. i get to a stop sign and there are about 1562 cars lined up. grrrreat. cue rain. pouring rain. so i decide i better drive using the right side of the windshield now...and i drive the rest of the way leaning over into the passenger's seat. this can't be safe, i'm thinking. this is worse than driving drunk, i'm thinking (not that i've ever done that...). i finally make it home. and the sun is out. perfect.

there could have been a whole portion in there about my weird patients, but i'll just leave that alone. except for the fact that my last patient today looked like the old lady saying "shhhh..." with her finger up to her lips in the shutter island commercial (see pic below)...and she wouldn't sit down or look at me...and she needed the window and door open. there's some weird shit in the world of neurology.

Happy Nurses Day

2010-05-06T22:11:00.011-04:00

i guess i'm saying happy nurses day to myself. someday i'll know it's nurses day before the actual day...it always sneaks up on me! i just wanted to take a minute and acknowledge who i have become. it's still hard for me to say that i'm a nurse. a nurse! i first wanted to be a nurse when i was in college, but didn't pursue it. then somehow i got the nerve to go to nursing school later and actually followed through with it. here's me on my first day of school and my first day of clinical...huh, never realized that my first day outfit is in the same color family as my scrubs. how cute.

i'm actually really proud of myself and what i've achieved. i'm a nurse and a nurse practitioner! some people don't even know what that is, but that's okay with me. usually after someone's first experience with an NP, they're hooked :)

i was told this week that i'm "nice" and "kind" and "capable" and was thanked for the attention i gave my patients. i was even told that my patients and their doctors have complimented me to my boss. maybe they're being nice because of nurses week? maybe not. maybe i've finally become a nurse.

A little smile

2010-05-05T09:35:00.001-04:00

This is actually pretty realistic and funny:

You know you're having a bad flare when...

A revelation

2010-05-05T08:56:00.004-04:00

We went on a surprise trip to Iowa last weekend because my husband's granny passed away. Of course when we got home I was exhausted and the next morning was my early morning (5am wake up call). I realized around 10:30 that morning that I was feeling off...I had forgotten to take my meds that morning! The reason this is important is because I hadn't taken the steroid or any Advil! The great thing about it was that I was JUST FINE without them!!!!!!! I've been taking a lot of Advil every day for over a year, so this is a great change. I also haven't been wearing my wrist braces to bed for a week or two now. And my hands haven't broken! Progress :)

So about Iowa...I was happy to go to honor Granny. She was pretty awesome. 93 years old and she still made it up the stairs into our house on Easter. I'm glad that she was out near us for the past several years because I got the chance to get to know her. Iowa is SO different than where I live now. It reminds me of upstate NY, where we went a lot to see my mom's side of the family when we were young, but flatter. So flat. Although I saw a t-shirt in the airport that said "Not everything is flat in Iowa"...I resisted buying it but loved it. Anyway, some parts of Iowa made me a little nostalgic, like the farms and the ice cream shop, but I don't think I could live there. I felt like I was jumping out of my skin at times. Happy to come home :)

I didn't actually buy this hat but thought it was funny so I put it on!

migraines

2010-04-27T07:19:00.001-04:00

i've been having a run of migraines lately that i can't explain. i thought my biggest trigger was poor sleep, but that hasn't been the case lately. they are coming when i'm feeling my best, typically just as i'm about to start my day...although not at the same time of day. this week i got one on sunday at 12:15pm and then another on monday at 5:30am. i get an aura which gives me an opportunity to take the medicine right away before the headache hits, but i still get the attack of symptoms. i've been able to go to bed right after taking the medicine, but then the nausea hits and it's horrible. i don't have a migraine yet today, but feel like it's there waiting somewhere. gotta find out what's causing them. i've seen that there's a link between methotrexate and migraines, but i have to take it so what do i do?

what kind of mother will i be?

2010-04-14T17:58:00.005-04:00

good question...if i ever get to that point, what kind of mother will i be?

i'd like to think that i would be a good mother. except that i wanted to drown my two new kittens this morning. they are driving me CRAZY!!! do mothers ever think like this? i'm pretty sure they do, but most would never admit it. these kittens are all up in my business all. the. time. and they jump on my legs, clawing the crap out of me. you have to understand that my skin is the whitest of white and i have a disease that causes inflammation and i'm allergic to cats. so you can imagine what my legs look like with big red scratches all up and down them. not cute. we're getting in to shorts season here, so these babies better start behaving!

last night, i was performing the glamorous job of scooping poop out of the litter box. well daisy (who wanted the ultimate amount of privacy in the beginning) decided to get in the box and poop! well excuse me miss thang...please go ahead. at least she knows where the litter box is now :)

the only thing that saves them is that they're cute...cutest when they fall asleep in my lap. this happens quite frequently, but only after they have run around like lunatics leaving a path of destruction in their wake. this tuckers them out and they come find mommy's warm lap and fall asleep quite quickly.

Adoption

2010-04-06T20:59:00.007-04:00

Well, turns out it's a lot easier to adopt cats than it is to adopt babies. Surprised? I didn't think so. I just needed a statement to tie in my two topics here. Been a while since I've written...I wasn't avoiding it, just didn't have much to post.

First thing first...Jeff and I adopted two kittens last week! Their names are Duke and Daisy and they're adorable. They're so funny when they run in the house and chase each other - they sound like a herd of elephants. When they're done running, they get up in our laps and fall asleep like the sweetest little things. Awwww...

I've been feeling pretty much the same. My knee and my hands still give me trouble, but not as much. They seem to be the stubborn points though, taking their sweet time to get back to normal. Jeff and I are still discussing our options as far as kids go. We still have pregnancy, surrogacy, and adoption as options, but each has their own set of pros and cons. The personal toll of pregnancy and surrogacy/egg harvesting is a little frightening, considering how rough last year was for me. But it's hard to jump right to adoption because ideally we would like to have children that have our own little "bits" inside. We also have to consider if I can even take care of children in my condition. I'm not sure we're ready for any of it at this point...hence, the kittens.

RIP tagalong

2010-03-10T08:34:00.006-05:00

well it's been a tough few days. tag started going downhill again and nothing really helped him. he was in renal failure, so all the fluids and medicine was just a way to buy time. we were going to try IV fluids again but i think it would have only given him a couple weeks of time and then he would have gotten sick again. so jeff and i decided that we would put him down. we had last night with him so that we could say goodbye. he even came into bed with us and slept between us for most of the night. that was so sweet. we went to the vet this morning and they were wonderful, always have been. they did a really nice job with him. so RIP tagalicious, we love you.

meds

2010-02-23T18:44:00.002-05:00

so i went to cvs tonight to get my refills...and again there was a problem. i don't get it. i figured out their online refill process, which was actually pretty simple...don't know why i didn't think to do it before. i ordered three meds through that over the weekend and when i get there tonight, they can only find two. eventually they figured out that the third one had only been partially filled. why don't they call you and tell you not to come yet? i just don't understand.

update on the bod: i'm really only bothered now by my wrists/hands and my left knee. i don't think that knee will ever heal. sometimes i wish i could walk like a woman again...instead i'm just waddling/limping around. yuck. my hands, especially my right hand, are really sensitive these days. i do the most simple thing and it goes bad and then i've lost it for a few days. that's annoying. i've decided that i'm going to teach myself how to write with my left hand. mom or zach, any advice on how to do that? next trick is to learn how to blowdry my hair straight with one hand. or embrace my curly hair...either one will work. i have a rash on my heels and toes that is annoying me...it's been there off and on for 5 or 6 years, but it's become worse recently, i can't even get a pedicure. the horror! so i'm seeing a derm person on friday. hope they don't give me an antibiotic, because you know what that means ladies...ugh.

i'm having trouble focusing at work lately. i feel like the best i can do is see my patients but anything beyond that seems to take all my effort. not sure why i'm feeling this way. just tired maybe?

crankypants

2010-02-11T09:52:00.003-05:00

"crankypants" is what my mom used to call me when i was young and was in this kind of mood. oh boy, i don't know how it happened but i definitely woke up in a sour mood this morning. i haven't been sleeping well for the past few nights, so i'm guessing that's it...but even a little extra snooze with my kitty this morning didn't help. unfortunately, being cranky makes it hard to go to work and listen to people complain about their troubles. and i'm talking about both the patients and the staff...i have one woman working at the practice who spends the entire day complaining. really? i'm not your counselor or your nurse practitioner. not today, it's just not the day...and i'm prepared to tell her that.

and all this with the snow...people complain that they get snow and they complain that they don't get snow. they complain about the roads and the weatherman and the plows and the tax dollars paying for it all. enough already. if you don't want to have snow, then don't live in an area where it snows! simple solution. and really, is there no other news than this storm? i find that hard to believe.

my husband is flying out to california for one day for work. one day! the kicker is that he's leaving monday morning...that day is supposed to be a holiday for him. not fair! it's disappointing because i was looking forward to the long weekend with him...bet he was looking forward to a day off too.

couldn't this pregnancy thing be a little easier? i think i've paid my dues with this whole lupus/RA situation. i think i deserve something to be a little easier for once. and how is it fair that ivf is covered by insurance but surrogacy isn't? and how is it fair that adoption and surrogacy can cost tens of thousands of dollars but getting pregnant is free? and all these "i didn't know i was pregnant" shows are so irritating to me. sigh... off to work.

and another thought...

2010-02-02T18:49:00.002-05:00

i reminded myself the other day that a patient is always a person first. they are not their disease...they are people with families, lives, jobs, pain, happiness, and sadness. always look at the person first and then you'll be able to treat them as a patient. you'll probably have better results as well.

an "aha" moment

2010-02-02T18:45:00.003-05:00

i was watching oprah today and she was talking about repairing relationships with others. she said something along the lines of: i won't go back in the past, but i will meet you where you are now. i think that hits the mark for me for some relationships that i didn't know how to describe or deal with. sometimes there's so much pain and silliness in the past that it's not worth it to go backwards and ask "why?" a million times. the answers probably won't help anyway. sometimes you just have to say "where are you now? i'll meet you there if you'll do the same." hmmm...that's an idea worth following.

little things

2010-01-24T14:31:00.003-05:00

wow, it's been a while since i've posted an udpate...but actually there really isn't much to update. things have been pretty much status quo which is nice. i really only have problems with my wrists/hands and left knee, but even these are better. i've been walking for exercise here and there which feels great. i'm a little slow because of my knee, but otherwise get along pretty well. the only change i've noticed recently is a good one and that is that i'm able to do things now without having to rest or feel terrible afterwards. we went to ny last weekend and i was able to visit many friends and family without missing a beat. i was tired when we got home but i was able to do it all! i even went to the mall yesterday and walked the whole thing, both floors, and was fine afterwards. so maybe things are looking up.

we're basically stalled on the baby front. we're contemplating our options but aren't really satisfied with any of them. most likely at this point is for me to try to discontinue the methotrexate later this year in the hopes of retrieving some of my eggs. that way we'll be able to use our own "bits" (as i call them) for a surrogate. we're hopeful...still trying to make sure i get better before we do anything.

Running out of hair

2010-01-08T09:00:00.002-05:00

Okay so we all lose a few hairs every day...that's normal. I've recently noticed that my hair is falling out all day long. It starts in the shower with a whole bunch, then with brushing and drying my hair, and then I find it on my clothes for the rest of the day. If I had to estimate, I'd say between 50 and 100 hairs are falling out every day! My hair is beginning to look thin and scraggly, especially the longest layer since it started out with less hair. So I'm thinking about cutting it shorter so that there are no more layers. Thoughts? By the way, this is just another glorious side effect of methotrexate :)

I'm not the only sick one in the house...my cat went into renal failure last week so he went and spent some time at the vet. Now we get to administer subcutaneous fluids every day! He actually handles it pretty well. He's gotten much better and is back to his normal self. I'm sure we have lots of vet visits to look forward to!

This was my first week back to work after about 10 days off. I could feel the difference in my body, my sleep, my hands...by Thursday my left wrist was so painful and I couldn't use it much. Over vacation I napped a lot and I miss that since going back to work. I didn't realize how much work was stressing my body. There's the potential that my position will turn into a combination of direct patient care and other responsibilities...more on that in a month or two when I know more. I think that would be better because I bet I'd be able to add more hours without too much stress.

Off for three days now...gonna get my naps in!

ready for 2010

2009-12-30T10:24:00.003-05:00

well i guess i spoke too soon. the day after my last post was christmas eve. i woke up with some wrist pain but nothing too bad. jeff and i opened our presents and then i cleaned up the house since we were leaving the next day. i didn't do anything strenuous or crazy with my hand, but i guess that doesn't matter. at some point during dinner at jeff's family's house that night, my right hand started to hurt again to the point where i couldn't use it. we still had to open all of our gifts... by the time i got home i was crying. actually i started crying while on the phone with my dad when he asked me how i was feeling. guess i was holding it in while at my in-laws' house and it all came spilling out. it's amazing how fast you can fall...

with the hubby's help, we were able to get through the airport stuff on christmas day. my sister picked us up and the christmas fun began! my mom and brother arrived a few hours later. it's amazing that none of our flights or car trips got messed up because there was a pretty big storm across the midsection of our country! we all got there okay. the twins were adorable! my sister went all out with the food and my mom baked like a million cookies, so there was always something tasty to eat. we had a great time. we came home on the 28th and were happy to be home. it's great to see family but also great to get back to normal.

last night i tried to pick up my medications from the pharmacy and it was a shit show. they had one ready...for another they had to spend time on the phone with the insurance company (why they didn't do that last week when it was called in is a mystery)...and for the third they had faxed my doctor a request for renewal but hadn't gotten anything back. so why didn't they ever call me? it was a mess. as i'm sitting there, i'm watching them screw up just about every order so i am not surprised that mine were such a mess. so i sat there for an hour...got my vacationing doctor to send in a prescription...and just when they told me they got the prescription came and they were working on it, the power went out. seriously??? so i had to go home, after an hour, with no medications. stupid.

i'm hoping 2010 is better than 2009...i'm over 2009!!!

merry merry

2009-12-23T08:21:00.003-05:00

wow, haven't written in a while. thankfully there hasn't been much to write about! i haven't had a hand issue in a few weeks which has been great. my knee is slowly improving and i've been able to do stairs a little easier. i'm still going to acupuncture twice a week which i think has been helpful. i'm not sure it would take care of things all by itself, but as an adjunctive treatment it is great.

i've seen two rheumatologists and an orthopedist in the last twelve days. fun huh? the rheumatologists have different ideas about treatment which doesn't make it easy. that's the problem with getting a second opinion...too many options and then i'm left making a decision that i'm not really qualified to make. right now i've decided to keep the meds the same...give my body some stability so that it can normalize. there were so many med changes over the past year so i think keeping things stable will be good for me. so i continue on plaquenil, methotrexate, enbrel, and low-dose prednisone right now.

i've had a little trouble recently when i'm in a situation with pregnant people or people with children. i cry at the drop of a hat now! i think i'm just really sensitive now that i know how difficult it would be for me to be pregnant (almost impossible at this point) or provide eggs for pregnancy (easier than getting pregnant but still difficult). it's a shitty situation...i don't spend all that much time thinking about it but every so often it surfaces. i missed a pregnant friend's dinner because of all this...she understands but still. then i went to an event where there were a million kids and ended up being upset. it's weird.

anyway...looking forward to christmas. we're spending christmas eve with my husband's family, then flying out christmas day to my sister's house where my mom and brother are meeting us. should be fun to see everyone and my sister's babies. the babies are a riot and the family always has so much fun when we get together. laughing til we're crying is usually the theme! i took the week off between christmas and new year's so i could rest up a little. then for new year's weekend we're going to new york city to see family and friends. should be a great week overall!

milestone

2009-12-13T21:00:00.003-05:00

ok so it's been a while...i was waiting for my hand to get better so that i could post but it wasn't getting better! sheesh! now my wrists are bad but whatever. the whole point of this post is that i wore my favorite jeans out tonight. yup, my fave fly jeans. i missed these jeans. i haven't worn them in months due to the steroid weight gain, but now that i've lost about half that weight, the jeans fit again! well, they almost fit. but it's close enough because they're stretchy ;)

i am slowly slowly slowly but surely getting better. gotta keep believing in that to make it happen. trying to limit myself in what i do so that i avoid the "broken" hands, which is frustrating, but i'm getting by. christmas is coming and although i'm not all that excited about it this year, i'm excited to see everyone around the holiday. seems like the holiday will stretch out a bit to fit everyone in, but that happens every year so i expected it. it kinda feels like i'm lucky because i get extra holiday time. we'll see how it all plays out. hope everyone is happy with whatever happens. things could be worse, right? i keep saying that to myself...somehow that makes things better. i am grateful for all that i have.

so much for that

2009-12-04T21:11:00.000-05:00

my hand is all messed up again. damn.

hope

2009-12-03T21:18:00.004-05:00

so i took a walk today. probably no one thinks that's a big deal, but it is. i haven't been able to take a walk in months. but i've been feeling good for several days now and it was a beautiful day...couldn't wait to get out of work and take a walk. and i'm no worse for the wear, not even sore now. it's a nice feeling...gives me hope that things are on the upswing and i'm finally digging myself out of this deep dark hole. thanks for the walk, jeff :)

feelin pretty good

2009-11-30T21:13:00.004-05:00

well at least things are moving forward...that's the good part. i saw my rheumatologist last week and we decided to keep things stable as far as medications go...no big changes for now. i did go back up on the steroids though because being on 2.5mg a day wasn't enough and my bod was killing me. so now i'm back on 5mg a day and feeling much better. i also saw the orthopedist that day and he was pretty impressed with my knee MRI...and that was done 4 months after the initial injury. i wonder what he would have thought had we done a scan right after the injury. anyway, he wants me to do physical therapy but first had another radiologist look over the MRI. they decided that i should repeat the MRI with contrast and additional sequences so i have to go back and do it again. i'll probably get that done this week.

the good news is that the swelling in my knee and in other parts of my body continues to go down, slowly but surely. it's nice to see the weight going down instead of up. those numbers were scaring me for a little while there! yikes! i think acupuncture is helping :)

my mom came up again this weekend for thanksgiving and helped me out a ton. that woman can find things to clean and organize anywhere! the bad thing about it is that i can't find any of my stuff now! ha ha... we did some decorating for christmas and things look great...although i do have a crooked tree. that's a whole other story...

a little thanks...

2009-11-18T21:01:00.004-05:00

in the midst of my recent hand issues and thus issues with being able to type, i forgot to post about my mom. she came up to visit a couple weekends ago...visit isn't the word...maybe work or help or something else would make more sense. she helped me and my husband with a bunch of little things that i was unable to do because of my hand. it was SO helpful and i truly appreciate these little things...a new shower curtain, fresh sheets, banana bread, a trip to crate & barrel (love that place)... thanks mom, shout out to you!

and thanks to maggie for cutting my food last night and to jeff for cutting my food tonight :)

Feeling grateful

2009-11-10T21:22:00.003-05:00

with all that i've been going through this year, there has been a lot of complaining. i just want to make sure that i don't sound ungrateful for all that i have. i am so thankful for my husband, my family, and my friends. there have been two losses in the past month that have hit close to home for me...jeff's colleague lost his wife who was only 33 years old. my age. she had lupus. and i also just found out that my friend lost her fiance suddenly. tragic losses in my opinion, but a reminder to live every day fully, tell people that you love them, and appreciate what you have while you have it.

so to everyone reading, i love you. thank you for taking the time to listen and to help and to love.

Challenge

2009-11-09T20:14:00.002-05:00

Okay, so my right hand "broke" again last week and is still not better...going on five days now. Anyway, this has been happening a lot lately which is extremely frustrating but also humorous. What's funny about that you ask? Well, I think the only way you can grasp (no pun intended) the humor is to do the following challenge.

I challenge you to do all of your normal functions and tasks with your non-dominant hand. I'll go easy on you and say you only have to do your normal morning routine, from turning off the alarm clock to driving your car to work. If you want to have lots of fun (note the sarcasm), do the challenge for the whole day. Trust me, you'll be laughing at some of the things you end up having to do. Note, you are not able to use your dominant hand for anything other than decoration (when my hand is "broken" i can't even put pressure on any part of the hand or wrist).

If you are having trouble thinking of what you'll have to do with your non-dominant hand, here are a few suggestions:

brush your teeth (including put the toothpaste on)
wash your hair
wash your body
put soap on your puff/washcloth
shave your legs/face
dry off after your shower
put makeup on (including eyeliner)
pop a zit
blow your nose
wipe yourself after going to the bathroom (a little gross, but this one gets the laughs)
put deodorant on
put lotion on
put your bra on
put socks on
pull up your pants
tie your shoelaces
put your watch/necklace/bracelet on
make breakfast
eat breakfast
start your car (this is difficult if you can't use your right hand)
shift gears in your car (i hope you have an automatic)
drive your car

I think you get the idea... Post some comments about your funniest moments, reflections, tasks that I didn't mention, etc. I'd love to hear how your morning goes!

long update

2009-10-28T21:42:00.003-04:00

just realized that i haven't posted for a long time...between being sick and my hands hurting, i haven't been able to write.

i'm really at the end of my rope and haven't been feeling well. all that was going on made me feel depressed. i've been out of touch with everyone and never really want to talk. i keep making myself go to work because i want to make money and i think it would be more detrimental to stay at home and sit in my misery, but i really don't want to go anymore. i don't want to go until i feel better and can be a good NP. i feel like i'm shorting my patients when i'm sick because i don't pay enough attention. it's not like anyone is going to die because of it but i'm definitely not at 100%. i almost asked for a leave of absence this week. and last week. and the week before that. i don't want to work when i'm sick. and it's not like i can call out sick because i'm sick every day!

every time i think i'm getting better, something else happens. my knee starts to improve and i get a migraine...the migraine improves and my hands go to hell...my hands start to improve and my foot hurts... seriously??? i'm out of energy for dealing with all this shit.

i did end up starting acupuncture and i feel pretty good about it. no major improvements yet but it's only been 3 sessions. i'll be going twice a week and i really like the acupuncturist. she worked as a nurse for a long time before going to school for acupuncture. i'm interested in seeing how it goes. i also got the MRI done on my knee and got the report back the other day. turns out my knee is a whole lotta mess - bone marrow edema, tendon ganglion, bakers cyst, mcl sprain, cartilage loss, etc. i'll be going over it with my doc on friday and should have a better picture of next steps then.

i spent last weekend at my sister's house with my husband and the twins. what a weekend! i had such a good time taking care of the kids and jeff was wonderful. he did so much that weekend and it was so nice seeing him with the kids. they adored him...if he was doing something, even as little as crunching on potato chips, they were enamored. i could have been dancing on my head and they wouldn't have noticed. they did pay some attention to me though...mostly when i was feeding them. ha ha... my favorite moments were when the kids woke up during the night...matthew would be so confused and sleepy and hailey would just be so sweet. love those kids!

unfortunately on sunday night when we got home, my body started to fall apart...my hands, wrists, knee, and right foot/ankle became so sore. it's been a rough week since then but i think my hands are finally starting to improve. my hands have been bad off and on...probably every 7-10 days, my right hand "breaks." that's what i call it at least, but it's really only the RA. but it makes it so that i can't use my hand and it's a constant burning pain that feels like there are shards of glass in my hand. it's interesting trying to use my left hand for things...it does spark some laughter but mostly just tears.

still on the injectable methotrexate and did the second dose on sunday. the nausea subsided on saturday after so many weeks. i'm thankful that it has stopped and hope that it stays away. that was torture!

guess that's the update for now...

quickie

2009-10-15T17:00:00.003-04:00

feeling better...out of my funk. trying out acupuncture tomorrow and getting the MRI on my knee on saturday. still nauseous from the mtx so i think i'll call my doctor tomorrow and get the injectable version. yay, two shots a week! whatever solves this nausea...

thanks for listening :)

Things could be better

2009-10-12T20:08:00.002-04:00

i had four days off this past weekend and had so many plans. i was going to spend time with jeff, plant some bulbs, clean up spring plantings, do some shopping, run errands, go out to dinner, catch up on sleep, etc. i was so looking forward to it even though i just came back from vacation. well...didn't get to do much of that...

starting on thursday afternoon, my right hand and right foot "broke" to the point where i was pretty much non-functional. they were so painful and i couldn't do much of anything. so i sat around thursday night, friday, saturday, and most of sunday. ugh. jeff had to help me do almost everything. this has happened to my right hand three times over the past four weeks...what gives? i'm not going to increase my dose of the methotrexate or the prednisone, which might help these symptoms, because of the toxicity of the medications. i'm just not going there. i'm not sure what to do. what if this had happened on a work day? well, that actually did happen once and somehow i got through the day...my notes were a little spotty though!

cute little story comes along with my suffering though...jeff was helping me shower on saturday and we were facing each other while he washed my face. that's kind of a weird thing to wash someone else's face. anyway, i raised up my hand to demonstrate how to wash my eye makeup off and accidentally hit my right hand against his arm, resulting in me gasping and then crying. i was sobbing while he was finishing washing my face (i think i just had enough of the pain). he turned me around so i could rinse off and i was still sobbing so he just put his arms around me and gave me the sweetest hug. i just love him.

i'm feeling pretty down lately and support from friends and family is so helpful. i feel very far away from everyone right now. i really appreciate comments on the blog...and italian donuts from friends (you know who you are!). i know some people have had problems with the comments section. to post a comment, click on the comments link below the post, write your comment in the box, copy the funny word, then click the circle next to anonymous or name and fill in your name (unless you have a gmail account)...then submit. any support will help me keep fighting the fight until i'm better.

Big step

2009-10-08T07:59:00.003-04:00

last night i did something that i haven't done for months...that i haven't been able to do for months. and not being able to do it kept me from doing more things, like exercising. it was one of my most frustrating problems in this journey. last night, thanks to a drop in swelling, i was able to get my sneakers on!!! my laces were very loose, especially on the left foot, and they pinched a bit going on, but i was wearing sneakers! this means i can go walking again and maybe even start exercising. looking forward to the swelling going down even more.

i forgot something for the "bad things" list the other day...i'm still fuzzy! and i'm fuzzy everywhere! thank goodness i have blonde hair...sheesh. my sister says it's cute because it makes me like a peach. what???

i think i'm feeling better from the methotrexate...still have the nausea but it's not as bad as it was when i was on vacation so maybe i'm getting better.

the good and the bad

2009-10-06T07:32:00.004-04:00

i tell my patients who are recovering from neurological events or injuries to focus on the good things, the things that are resolving to help in healing. so i thought i should do the same... funny, i'm having trouble thinking of bad things!

good things:

swelling in left foot is going down
swelling in face is going down
easier to get out of bed in the morning
sleeping through the night
mouth sores are gone
weight is slowly decreasing

bad things:

left knee is still a mess - MRI to be scheduled
abdomen is still swollen - i miss my old clothes!
nausea persists - yuck
purple stretch marks in weird places
wrists/fingers still painful and swollen

vacation - part 2

2009-10-04T14:26:00.008-04:00

a little more about our vacation...

well the drive to charleston was about 2 hours long but i was sick the whole way so it felt like a million hours. plus, the road we took had no rest stops! i was very happy to get to charleston! our hotel was actually converted from the original citadel...so cool. we ate some delicious meals there, thanks to recommendations from friends and family. the food was just incredible. we also got to have dinner with jeff's friend from college who i hadn't met before. so much fun! it was a five hour drive from charleston to atlanta, then we flew home last night. i was never so happy to see my in-laws in my life (they drove us home)! i couldn't wait to get home :)

slept for a looooooooong time last night and am feeling better today. unfortunately today is methotrexate day...cross your fingers that the nausea doesn't return! i spoke to my doctor today and we'll try the oral methotrexate one more time and if i'm still nauseous, then i'll switch to the injectable version. i don't understand the nausea though because this didn't happen the first time i started the drug. i'm also going to get an MRI on my knee because it is still bad...been bad since the end of june! enough is enough.

here are some pics from vacation...you can see that the puffiness has gone down but isn't gone yet! yuck.

self portrait from our last night in atlanta

a nice person took our picture on the beach on hilton head island

dinner at high cotton in charleston

on the boardwalk in charleston during our city tour

vacation

2009-09-30T09:11:00.002-04:00

well here i am halfway through my vacation and thought i'd put up a quick blog. we went to atlanta first and saw a few friends. one friend owns a restaurant and we went there twice. we also met up with some other friends who we met on a cruise a couple years ago. we went to the world of coke with them and then to dinner. glad they were able to make it in to the city and that the flooding down here didn't hit anyone i know! someone said they got 18 inches in one day in one of the areas that flooded. so scary. on monday we drove for almost five hours to get to hilton head island. the idea was that we'd stay on the island and then drive to/from savannah. well we've been here for two days and haven't made it in to savannah yet. oops! our hotel and beach are too nice to leave! it really is beautiful here, definitely want to come back for a longer stay at some point. today we leave for charleston which is our last stop. we're staying in charleston so we'll be able to see much more of the city than we did here.

unfortunately i've been sick for most of the vacation. i feel so bad for jeff for having to deal with all this. i've been nauseous almost all day every day, i think from the last medication that i added back in - methotrexate. one day i didn't eat much because of the nausea and by the time we went out for dinner, my blood sugar was very low. i was shaking and having trouble and couldn't get the level to come back up. we came back to the hotel and i force-fed myself until i was a little better. that was scary...never happened that bad before. last night i was able to have a whole dinner with jeff and not have to go back to the room in the middle of it. small victory! the nausea and eating problems are part of the reason we haven't made it in to savannah though. my knee is a mess and my hands have been bad at times too. one day the right wrist/hand was terrible so we went and got a wrist brace and it's been okay since then. otherwise things are great!

okay off to breakfast and then the beach...then on to charleston!

you must be kidding me

2009-09-23T10:28:00.003-04:00

just noticed a new side effect of the prednisone...one i had been dreading. so a few weeks ago i noticed these purplish marks on the inside of my upper thighs. i thought they were the dreaded purple striae that could come from prednisone use (i remember learning about this in nursing school when we learned about Cushing disease and hoped i'd never get them). i thought it was a strange place to show up though because they usually show up on the abdomen/flanks. i politely ignored them thinking that they would go away as i went down on my dose. well this morning i got a good little shock when i noticed more of them on the bottom of my boobs. my boobs! yuck. i'm horrified. i've tolerated most of the bullshit that the prednisone has brought my way, but don't mess with my boobs!

here's a link to possible side effects of prednisone, courtesy of wikipedia. sadly, i think i've hit most of them...http://en.wikipedia.org/wiki/Prednisone

my right foot has started to swell more noticeably and i'm having trouble walking. the left foot still looks like a marshmallow but i think it's slightly better since i had the cortisone shot in my knee. this is all perfect for my walking tour of the south that starts on friday. so discouraging... been feeling like crap all week, i think because of the methotrexate. sigh. just hoping a good day will come along soon...

Enbrel

2009-09-20T21:04:00.003-04:00

Jeff and I got destructive tonight and after doing this damn Enbrel shot so many times, I finally got to see inside of it! Check it out...

There's more to post but my hands are killing me...lost the use of my right hand for two days last week which was no fun. Pretty discouraging actually, especially in light of how hard I'm trying and how many meds I'm on. If anyone is taking notes, I'm back on all of the medications that I was originally on a year ago...plus Prednisone and am doing no better. Awesome. Yeah yeah, I'm sure it'll get better...I know that's what you're thinking. I think that too at my good moments. At my bad moments...well, I'll save those obscenities for when I really need them :)

Victory

2009-09-16T10:51:00.003-04:00

My sister reminded me that I hadn't posted about this...Last week, Jeff found out that he will be able to decrease the amount of time that he's spending in NY on his current project. He has been going down to NYC for four days a week since May with the threat of increasing to five days a week at some point. He talked to his boss and let him know what was going on at home with me...his boss and the client agreed that he can go down for three days a week from now on. Pretty sweet. I think it's not only good for me, but for him...it's been a long time that he's been traveling for this project and I think he's tired of it! We'll see how it all plays out but I think it's good so far.

My hands and wrists are killing me this morning...not sure why, maybe I slept on them funny? Showering was tough...still have to blowdry my hair which is not going to be fun. Putting on my bra won't be either. Wish Jeff were home with me this morning :( I'll work it out, I always do!

Okay, off to finish getting ready...

More med changes

2009-09-11T21:14:00.002-04:00

Well I went to my rheumatologist today for a follow up. I had been looking forward to this appointment for a while because I would find out how much more I could decrease the prednisone. I would also figure out our next steps...I don't like not knowing what's coming next. I'm sure my husband would vouch for that. Anyway, I went to the appointment alone because Jeff had so much work to do today...I felt bad because he looked upset as I left. I didn't really want to go alone because I knew it would be easier to have his support during it. I also don't like being in public alone because I feel like I look funny. Well I did it alone and I'm fine...knew it would be okay.

So I went and I knew I wasn't acting like myself. I felt bad for it but I am so discouraged by this process at this point and was trying not to cry during the whole appointment. He did an x-ray on my knee and then decided that I should have a cortisone injection in the knee. Ouch! He said that would decrease inflammation which would allow the fluid that is in my foot and lower leg to return to my body as normal. Hope it works... Feels better already but is still unstable and a little painful. I'm resting as I was told to do. He said the bumps in my knuckles are fluid bubbles...yuck. He also said a diuretic wouldn't help my swelling go down, would actually make my overall situation worse. I suspected as much because no one had offered that option to me, but I still had to ask. I'm desperate to get my face back! Unfortunately, I have to stay on the prednisone for now. I'll go down to 5mg next week and then see him again to see what's next.

The end result of the appointment is that we're still treating the flare and have to add back in the methotrexate, which was the first medication I started weaning off of last October. That's right, it's been almost a year that I've been doing this shit. Ugh...nothing to show for it except knowing that I do indeed need to be on medications to treat these awful diseases. So now I'm offiially back where I started medication-wise, but worse off symptom-wise and with no baby to show for it. Awesome.

Got some BK on the way home to cheer me up and it was delicious! Then I took a nice nap while under a blanket that my husband put on top of me. So sweet :)

well hi...it's been a while

2009-09-08T22:30:00.006-04:00

it feels like a long time since i've posted...not sure why. i had a great relaxing four-day weekend with my husband. we had some excellent meals and spent some time with friends too. we also played lots of pool on our new pool table. it was so much fun...we laughed a lot which we really needed! i'll have to practice while he's gone so that i can beat him when he gets home :)

things are pretty much status quo with my bod. i'm down to 7.5mg of prednisone each day which is a big milestone because now i go back to the doctor to see what's next. my appointment is this friday. not sure what he's going to say about my fat foot and knee. i'm actually going to ask for an MRI on my knee because i think i hurt it in nashville in june. we've been attributing the knee pain and swelling to the RA, but i want to make sure there's nothing else going on. my left leg is definitely bigger than my right leg. and because of the knee pain, i think i'm compensating when i walk so now my left hip is really sore. i also have this new burning pain in the middle of my back that is so distracting. jeff tried to massage it yesterday but the pain was terrible! what the hell is it?

i now have bumps on the knuckles of both of my index fingers...that's hot. who knows what they are? jeff keeps asking me as if i know... my fingers are swollen too...i took off my wedding rings because they were so tight i thought i might not be able to get them off (took a lot of soap and really cold water). we went and got "replacements" at kohl's and now i have new rings! they're so sparkly! i also got three new pairs of shoes this weekend...one size up and wide if i could get it. i can't keep squishing my fat foot into my regular shoes! so now i have new rings and shoes...i guess there are benefits to this whole mess.

i almost forgot to say that i think my face has started to shrink a bit. friends have noticed and i have even noticed at times. i'm so relieved...thought it would never happen! now we gotta get workin on my gut!

the pits

2009-09-03T21:38:00.002-04:00

i think my right leg is swelling up the way my left leg already has...this is not good. pitting edema in my right ankle. hmmm...

Thursdays

2009-09-03T08:30:00.002-04:00

i love thursdays! i know, it's a weird day to like. a lot of people like wednesdays because it's the middle of the week. more people like fridays because that means the work week is over. but i really like thursdays because it means good things are to come. jeff comes home on thursdays. thursdays are also my last day of work for the week and it's a short day, only 5-6 patients. it also means tomorrow is friday which is graduation day for prednisone. when work is over on thursdays, it means the start of my 3-day weekend. and this weekend it means the start of a FOUR day weekend. i'm always in a better mood on thursdays because of all this. what could be better?

feeling pretty good today as compared to the rest of the week. my knee doesn't hurt as much and my mind is a little calmer than it was earlier in the week. i redid my blog this morning...put some colors in to match the color of my knuckles. ha ha ha...just kidding. i just liked the colors and they happen to match the purple in my knuckles!

22 days until our vacation starts!!! not that i'm counting...

For my sister

2009-08-31T20:07:00.002-04:00

my sister demanded that i write a post tonight, so here goes...

i've been putting off posting because i don't really have anything good to say and i feel like i'm complaining a lot lately. instead of complaining though, let me find some good things: i'm down to 10mg of prednisone a day, jeff and i threw a great party this weekend, i think the swelling in my face is starting to subside slightly, i get to wear really comfy clothes at home, i have a job, my mom and sister call me all the time, my husband strokes my hair when i'm crying, i have a good cat...there are a lot of good things.

realistically though, it's been a rough few days. the symptoms have definitely come back in my wrists and fingers which makes it difficult to do a lot of things. i can still DO them, but it's just harder and makes me wince. my left side is definitely swollen and my foot looks ridiculous. i measured around my knees and the left knee is 1.5 inches bigger than the right! my two index finger knuckles are getting more purple by the day and now there are bumps under the skin on both of them. lovely. my wedding rings are now stuck on my finger...never thought to pull them off before the swelling got so bad. never thought the swelling would get so bad.

i'm tired of this whole process...need to get to a better place.

mommy or auntie?

2009-08-25T20:59:00.013-04:00

ugh...today was disappointing. when i woke up, i was still puffy. i kept looking in the mirror like wtf??? i don't know why, but i feel like on day i'll wake up and it'll all be gone. i can't wait to be back to normal! i slept okay for about 5 hours, but then i started getting cramps in my feet and kept having to get out of bed to make them go away. so from 5 to 8 it was a pretty fitful sleep. then when i woke up for good, i realized that my knee is broken, not to mention my fingers and wrists. ow. things hurt. making breakfast was a challenge...how come i haven't hired a chef yet? so as i've come down on the prednisone, my arthritis pain has started to come back. damn. holding babies all weekend probably didn't help, but isn't that my grand plan anyway? maybe i'm not cut out for this mommy stuff after all.

getting dressed is interesting these days...i have exactly one pair of pants for work that are comfortable and 3 others that will pass for fitting. now i'm wearing some clothes that are maternity clothes! they're comfortable and they fit so that's what i'm going to wear. now for shoes...my left foot is so swollen that wearing shoes is becoming more and more difficult. not sure what i'm going to do about that.

if you're wondering what babies i'm referring to, they're my sister's babies. i'm so in love with them! i spent the weekend at her house to celebrate their first birthday. we had so much fun...here are some pics.

you can see how cute they are and how puffy i still am. they are so wonderful and it was great to see my family. mom was there and dad too...had some great conversation and laughs with everyone! like my friend said to me when i got home, the trip was great medicine for me. she's right.

ahhhhh...

2009-08-20T09:48:00.002-04:00

i slept through the night last night! it was the first time in probably four months that it's happened. 6.5 glorious hours... i guess it takes a cold, benadryl, and a little red wine to make it happen ;) oh yeah, and a decrease in the prednisone dose.

looking forward to friday where i'll decrease down to 15mg a day. interesting thing is, that's the dose i was on when i flared in june two months ago.

new doctor

2009-08-18T07:24:00.002-04:00

i finally got in to see a new rheumatologist yesterday after waiting for a couple months. i've always wanted to get a second opinion on my treatment but never knew where to go. apparently this woman is one of the experts in boston, especially on RA/lupus and pregnancy. she said some interesting things. after taking my history (glad i wrote it all out before i went), she said that i sounded more RA than lupus. i guess i felt it was the other way around since the lupus came first, but really the lupus only produced the rash from the sun and fatigue all these years where the RA was so much more debilitating. then when she examined me, she said i had a "fair amount" of arthritis and that i must have a high tolerance to pain. she said the swelling on my left side (wrist, knee, ankle, foot) is from the arthritis (synovitis) and the swelling in my trunk/abdomen and face is from the prednisone. hopefully the left side swelling will subside as i ramp up on the enbrel. she said i have toxicity from the prednisone and suggested that i not go on that high of a dose again...no worries i said, i'm never doing this again if i can help it! she did say the combo of plaquenil, enbrel, and methotrexate that i take normally is a good way for treating the illnesses that i have, which is good because i think that combo works for me.

as for pregnancy, she suggested i go off the pill so that i can get my period regulated and do ovulation tests to figure out my ovulation schedule. she said i can stay on the plaquenil through the pregnancy and that i should stay on the enbrel at least until i find out i'm pregnant. what we didn't ask was a timeline for when we can start trying...i think i'll stick to what my other rheumatologist said for now, which is the beginning of next year. gotta get myself feeling better and stronger first.

i really want to be exercising and getting stronger but i realized on sunday that i can't get my swollen foot into a sneaker! so i think i might try to do things at home where i can be barefoot, like yoga and pilates or an exercise dvd. we'll see how that works out. i thought my face was getting smaller, but i was wrong. still huge. i actually bought a maternity dress the other day...at least i'll have a headstart on my wardrobe when i do get pregnant! might go for pants next...i'm running out of options even though i go shopping every weekend for bigger clothes. these are funny times...

a little side note...happy 1st birthday to my niece and nephew!!! we get to celebrate this weekend...can't wait!

big girls don't cry

2009-08-16T07:46:00.004-04:00

well, i'm graduated down to 20mg a day now :) this is exciting because one doctor told me that my swelling might start to go down once i'm on this dose. another said not until 10mg, but i'm voting for 20! yesterday was the first day that i thought maybe my face looked a little smaller. unfortunately, my abdomen is not...getting dressed is getting harder and harder. there are clothes strewn all over two bedrooms in my house as each morning i go through many different outfits trying to find something that fits. i now am out of all of my 8s, 10s, and medium t-shirts. also can't wear anything with an elastic/fitted sleeve because apparently, my arms got bigger too! my bras are tight, but they don't sell the size i need in stores...only on the internet. so frustrating...made me cry the other day! i went shopping AGAIN yesterday and got a few things in yet a bigger size. my boss also said i can wear scrubs to work so that will help.

i did lose 5 pounds overnight last night though...all through peeing! i was up every 30-60 minutes to do that though...not a good sleep last night. i finally just got up at 6 because i was so annoyed. lots of house projects to do though so the time will come in handy.

i see the new rheumatologist tomorrow...just to get a second opinion and to see what she has to offer as far as pregnancy advice. should be interesting. this is the last fact-finding mission of the summer. i'm hoping things just start to settle down now.

Half-stache

2009-08-11T06:13:00.003-04:00

some changes are going on here that i'm not particularly pleased with... i've been noticing that the hairs on my upper lip have been getting a little longer and more plentiful. and jeff said to me "babe, don' t take this the wrong way but i think you have chin hairs...good thing your hair is so light." this weekend a couple of thelip hairs started to tickle me so i decided to pluck them. holy crap that was painful...definitely worse than eyebrows. so then i decided to use waxing strips. um ouch. worst thing is, the strips only took the little hairs off in the middle of my lip, not the longer ones on the sides. not to mention that my lip is still a little too pink and it's two days later. so now i have a HALF-STACHE! my new nickname :) oh and i noticed last night that my shoulders are fuzzy...come on now...gross.

then last night when i weighed myself (i do this at night and in the morning to see how much water i lose through peeing a million times a night - fun game for me) i had broken a mark that i have never been to...171.5 pounds!!! wtf??? so i got upset and started to cry. i know it will go away and that it's temporary (people say that shit to me every day and i get annoyed because i already know that) but it's so gross. i'm definitely growing out of most of my clothes and i'm irritated because i don't want to buy a million new things knowing that the weight will go down. i'm just going to start wearing those dresses that mrs. roper used to wear on three's company. that's hot.

i told a friend last night that i look like a cabbage patch kid gone wrong...more like a garbage pail kid! see, i already have a garbage pail kid name...half-stache!

update: i plucked the shit out of my stache...looking better now!

Graduation day!

2009-08-07T10:20:00.002-04:00

Every Friday is graduation day now because I get to graduate to a new dose of Prednisone. Today I'm going down to 25mg...hallelujah! Every step down is a good step because it means I'm getting closer to having a normal face again. Well, as normal as it was before ;) I'm also seeing my rheumatologist today so maybe he'll make additional changes...we'll see. I'm feeling pretty good, just some swelling in my left foot and knee and some pain in my wrists, but otherwise things are good. The sleep is getting a bit better and I've been having a good chunk of sleep for 3.5-4 hours in the beginning of the night for the past few nights. After that though, I'm still up every 1-2 hours. Feeling pretty tired today because of it.

Last night I was having a conversation with my husband and all of the sudden I was crying and totally lost it. I realized that I've been trying so hard to keep my head above water with this whole thing, but have been squashing down feelings of depression and guilt and not being good enough. Who wants to admit that all that is going on? So I just try to be normal and go to work and laugh things off...but I'm tired. I guess last night was my breaking point. Jeff said he was actually glad that it happened because I was finally being honest with myself. It's true.

Anyway...

My mom is here visiting this weekend and we have lots to do! She's great at helping me with projects and just overall cheering me up. How do moms know how to do that so well? Off to have some fun...

39-36-41

2009-08-03T20:41:00.002-04:00

those are my new measurements...39-36-41. guess that means i still have curves, but trust me they're all in the wrong places. i have no idea what my old measurements were but they were smaller than that! and i'm not measuring my face or neck because those are just so disgustingly large right now that the numbers wouldn't even be funny. although maybe i should do it and write them down in a secret place. hmmm... i meant to take a new face picture the other day to post because people have said it's gotten worse. maybe tomorrow.

well, i came to a realization the other day...things are finally settling down from the seriously acute phase that they were in. for the past three months i've been flaring and going on meds and had a million questions about meds, pregnancy, surrogacy, and adoption. my head has been spinning with all the information and appointments and conversations. now i can say that things are calming down as i go back on my medications, wean off the prednisone, and get answers to my questions. hopefully all of that will bring me to a good place where my body is calm enough to be pregnant. i'm in my second week of the enbrel now and am down to 30mg a day of the prednisone. i have a doctor's appointment this friday with my rheumatologist and an appointment on the 17th with another rheumatologist for a second opinion on meds and pregnancy. after that, hopefully i'll be smooth sailing for a few weeks.

i was at a dinner party the other night and a girl was innocently taking pictures that i was refusing to be in. she kept pressing me (she was a little drunk) and i finally said to her "look, it's hard enough for me to come out in public like this and i do not want a record of it." she got the message. honestly though, until i see a picture or look in the mirror, i forget that i look like this. it's a shock to me every time, believe it or not, and i'm horrified that i've left the house. so please, no more pictures...i'm trying to keep living my life but i want no record of my appearance.

my mom's coming up this weekend and i can't wait. she's been very busy working on her house and i'm hoping she brings that energy up to mine! i have lots of projects and want to start getting ready for our end-of-summer party...i know she'll be a big help. only a few more days of work and then the fun begins!

sad

2009-07-31T13:04:00.003-04:00

awwww, just realized it's been a year since my oscar died. i still miss him! :(

Public appearances

2009-07-30T07:46:00.002-04:00

well, the side effects of the high dose steroids have gotten to me...the swelling in my face and trunk are getting too much to deal with. the swelling has become painful and some of my clothes aren't fitting. my skin aches. and i'm embarrassed to be out in public doing normal things - seeing my patients, going to stores, seeing friends. i'm just uncomfortable with it all. most days i'm okay but others i have to force myself to walk out the door and this week has been tough. i spoke with a doctor yesterday and he said he doesn't usually see the swelling begin to resolve until a patient is down to 20mg a day. i'm at 35mg a day and won't be down to 20mg for another couple weeks. groan... everyone keeps saying "this is temporary"...yes, i realize that, but it's happening now and it's hard to deal with. i keep telling myself "keep your chin up!" but this chin is getting heavy! ha ha...

on a totally different note, i took a week of vacation last week and spent it with my family and friends on long island. i loved it! it was nice to be able to relax and do normal things with everyone instead of racing around trying to fit everything in to one weekend. being on the steroids made it possible for me to hold my niece and nephew, which i wasn't able to do well a few months ago when i saw them. i was also able to be out and about without being in pain and could spend some time in the sun without getting a rash. i did have severe munchies all week and my family was making fun of me...i couldn't help it! but i did get to eat some yummy things :) so yes, i love the steroids but i also hate them.

Two steps backwards

2009-07-26T20:48:00.003-04:00

it just occurred to me that today and tomorrow represent two steps backwards in time. today i restarted the enbrel which i haven't been taking since march or april. can't say i love that shot, but i do want to have things under control. the hope is that it will get the disease under control while i'm weaning off of the prednisone and prevent a flare. i'm now down to 35mg a day and i can feel symptoms coming back in my hands and wrists. boo. unfortunately, the swelling in my face, neck, and abdomen are sitll there...so uncomfortable! i'm going back to work tomorrow after about 10 days off and i'm really dreading it. it's just embarrassing to look like this and i really don't want to go anywhere that i have to look people in the eyes and pretend i look normal. my NP friend saw my picture today and reacted in a funny way, even though he sees patients on prednisone all the time. don't remember the exact words, but it was something like "oh my god dude"... yeah.

so the other step backwards is that tomorrow i'll go back to my old hours at work and will start early at 7am. we've only adjusted mondays, so if it sucks at least it will only suck for one day. and it'll mean some extra money each week, so that's a good benefit for me and jeff. even though these are backward steps, they're forward steps as well because they represent some normalcy for me. they may even get me closer to pregnancy, so keep your fingers crossed!

New pics

2009-07-22T09:29:00.006-04:00

Ahhhh the puffy face...new and improved!

Me - like Martin Short in Pure Luck, Eddie Murphy in the Nutty Professor (this is what I was told) - I think it's funny

Me and my sister - cute!

Me and my niece - she was upset that my cheeks were bigger than hers!

this isn't funny

2009-07-21T06:32:00.002-04:00

sleep evaded me last night...i was SO looking forward to sleeping after a long day and it just wasn't happening!

11:00 - off to sleep
1:30 - up to pee (i drank some water before bed so this was fine)
2:30 - up with a cramp in my foot (hate those)
3:45 - up with a cramp in my other foot (okay, enough already)
4:30 - up with cramp in my calf and foot (seriously?) and to pee, stayed awake until 5:00
5:45 - up...why? i don't know, maybe to listen to the birds
6:15 - up for good

on a somewhat better note, i think we figured out a plan for the immediate future. i think i'll restart the Enbrel to get the disease under control. then i'll wean back off of it while remaining on prednisone to prevent a flare. we'll try to get pregnant during this period and see how it goes. i was feeling like going back on the Enbrel would be like an end of us trying for a natural pregnancy, but it doesn't have to be. we can just use it as a method to gain control and then stop it again. makes me a little more hopeful.

the face is still crazy puffy. we've noticed that it gets worse as the day goes on. my knee and ankle are swollen again too, but i think this is the disease and not the prednisone. today needs to be a rest day for me...been too busy this weekend. when the steroids are making me feel so good i tend to go overboard without noticing. maybe a nap is in order this afternoon after that glorious night sleep that i had.

Options

2009-07-19T14:56:00.002-04:00

I went to visit a fertility specialist on Friday to see what my options are for going forward with pregnancy and other things. I keep hoping someone has an answer about the Enbrel, but so far no one knows anything for sure. This woman didn't either...sigh. Anyway, it looks like our options are:

1) Get pregnant the old fashioned way...after the disease has been under control for several months. Considering it hasn't been under control for several months, this doesn't really seem possible in my mind right now.
2) Get pregnant the old fashioned way while on Enbrel, taking a chance that all will be okay with the Enbrel on board. Kinda risky...
3) Use a surrogate that we don't know. Ballpark amount for this? $50,000. Right, not really an option.
4) Use a surrogate that we do know. Ballpark amount for this? Less than $50,000 but cost unknown.
5) Adoption.

Then we need to think about the fact that the disease may worsen during pregnancy and most likely during the post-partum period, so even if all goes okay with conception, the pregnancy itself may be a mess. Not so sure how much more the bod can take, you know?

I'm in NY now visiting with family and friends for the week. I've been looking forward to this week for months and I'm so glad I'm finally here. It's been interesting to see everyone's face as they see my puffy face for the first time. Some people recognize it as the steroids, but others have no idea what to do. They don't say anything but I can see in their face that they're like "what the hell?" My brother-in-law told me that he didn't know what was going on before he saw me and had to pull my sister aside and ask what is wrong with my face. Funny. We all decided that I look like Martin Short in Pure Luck when he gets bitten by the bee. Cute. I'll post a pic later...it's worse than the pic in the previous post...not worse, just funnier looking.

Off to get a snack and a drink...that'll make me feel better!

Discouraged

2009-07-14T09:28:00.003-04:00

I was having a pretty good morning today until I filled my pill box for the week. I just kept taking more and more bottles out of the cabinet. For someone who is supposed to be coming off her meds, this is pretty discouraging.

I'm also discouraged by this whole process. Trying to keep my head up but sometimes the whole thing just gets to be too much. Looking at finances for a possible surrogate is so overwhelming. Hopefully I'll be able to get some concrete answers this Friday from the fertility specialist and then will be able to make some decisions. It's just frustrating.

Woke up this morning with a sore thumb joint and swollen knee. I've only just started weaning off the prednisone and am feeling the effects. Hopefully it won't last and is just the result of poor sleep.

At least it's a nice day out...if I were a bad person, I would have called out sick this whole week! It's just gorgeous outside!

UPDATE: Best advice I've gotten so far, comes from a rep who told me she's pregnant today. "All you have to do is do it a lot!" Um thanks, if only it were that easy.

Doctor update

2009-07-11T06:54:00.005-04:00

ok so back to the doctor yesterday to beg him to wean me off some of this prednisone...he obliged. i'll be going from 50mg a day to 30mg over the next 4 weeks and then will see him again. labs looked good...there was a concern about renal function during that last flare...but things are fine. he'd like me to restart that godawful enbrel shot in order to get the disease under control, but there are issues with that. we still have no clear answers if it is safe to be pregnant while on enbrel or if the enbrel babies have higher risks for birth defects. it's also unclear if i can retrieve eggs if needed for surrogacy while on the enbrel. so i'm holding off until i meet with the fertility specialist next friday. hopefully she'll have some answers. my rheumatologist did point us towards a group called OTIS who gathers information about pregnancy and illness/drugs. they do have a whitepaper on Enbrel that looks a little promising. these aren't drug trials with hard data, but just data collection from people who volunteer information. so i'll take a look at that. i'll do some blog searching to see what other people are talking about too.

this process has been so frustrating because it's been 10 months now that i've been weaning off the meds, with the last three being really tough with disabling symptoms a good percentage of the time. if i had known that i'd be back on almost all my meds after a year, i'm not so sure i would have tried at all. although the whole thing showed me that i'm pretty tough and have a good pain tolerance. maybe that bodes well for labor? haha... at this point i'm discouraged but holding my head up because what else can i do? jeff and i talked about our options yesterday and he had some really good ideas about how to go forward. so now it's information gathering time...

i talked to my boss briefly about how to go ahead with my schedule at work. he had some good ideas that may work well. he was also very supportive of me taking my time to do what i need to do. he's actually given me much more leeway than i expected so i'm glad i'm there. we're meeting on monday to discuss a hard plan for moving forward, likely including a supervisory/training role over the new nurse practitioner that is coming on this month. he suggested she do the exams/notes for some of my patients in the morning hours when it's tougher for me. that way i get more hours but wouldn't be hurting myself. i would like to have more hours too so that we have more money coming in. i like working part-time but i like money too :) oh yeah and he told me his wife is pregnant too. isn't everybody???

looking forward to going to NY in a week for a family vacation...i'm needing some relaxation and good old family time.