Sjogren's Mom : Sleep

Back in the Saddle

amop — Mon, 29 Jun 2009 00:52:00 GMT

Okay, I've been away. Not literally, just been swamped with other things, and generally by the time I can type at night, I can't. Read on to see why.

An update on where I am:

My neck and back are still bothering me. After months of seeing a chiropractor (which helped greatly!), I was still getting better then having set backs. Frustrated, I was finally referred to a neurosurgeon who had me see a sports medicine guru who ran a nerve test that determined my bulging and protruding neck discs had not yet compromised my nerves. He also had me see a pain management doctor who started me on a series of up to six spinal injections of an anti-inflammatory Depo-Medrol. Same medication my rheumatologist had prescribed in December that got me on the road to recovery...only to have a set back in February.

I've received two injections thuse far. First one...pain got MUCH worse, then mellowed out a bit, but never went away (there is a chance it will get worse before it gets better). Second injection started working after about a week and a half (it's supposed to work within 3-5 days, and lasts for up to 21). I saw my pain management doctor after having 5 days of no pain. We discussed returning to activity (like vacuuming, running, lifting, etc.) and she said to take it slow, but that if I was pain free now, chances were I'd remain that way. YEAH. Yippee. Let's go celebrate. Wait, the whole family gets a cold. Then what happens...5 days got by and the pain is back. So I give her a call...she says to revert back to the Tylenol every 6-8 hours and ice 15-20 minutes three times a day. I give it the old college try. Nope. Nothing. Nada. Have to wait until mid-July when I see her for a follow-up...as she's out on maternity leave.

About two weeks ago I had a quarterly visit with my rheumatologist, and as usual, she asked if I had any new symptoms. Yes I do. EXTREME fatigue. Like don't want to get out of bed until noon (although I'm up before 7 each day) and could fall asleep sitting upright on the couch watching the boys by about 3pm (although I don't). Then I get my second wind, pull together dinner, baths, bedtime, and then it's 830pm and I'm wide awake. I crawl into bed between 10:30 and 11ish each night only to sit and roll, and wait to fall asleep. So when she asked if I was sleeping okay, I told her that I'm also up a few times a night to fetch a crying baby and get him back to sleep, help a 3 year old get in/out of his pjs as he sleepily informs me he has to pee, or help him build a tent out of his covers so he can nest up and fall asleep. My husband sleeps through everything, including me punching him asking him to get out of bed and help. I also mentioned that I was still suffering a bit from the neck/back pain. That launches a conversation about why I can't take anything (nursing) and what I've been doing (waiting).

She informs me that there's a very low dose muscle relaxant that she gives, "her old bitties" that she thinks might help me get a good nights' sleep...and hopefully function better during the daytime. We also discussed the fact that I should not nap (even if I can) during the daytime and that I need plenty of exercise. Hold on, I'm still on limited activity. Yup, no exercise. Figures why I still have 30lbs of baby weight to go...and lucky me, just had that insurance health exam. Hard to explain that I'm this heavy because I'm a new Mom as my nearly 1 year old is crawling at mock speed through the house!

Back to the meds...I called the pediatrician after leaving her office and was informed that if I take one tablet after I nurse for the night, it should be nearly out of my system at first light. It has a relatively short half life. Good for the fact that I'm nursing...however, short half life means it also doesn't stay in my system (AKA help me) that long. Typically you take 4 pills a day. I'm taking just one. Okay, I give it a go. After just about a week I notice my youngest has nearly stopped nursing...pushing away, making faces, doing everything to avoid me. I think it's because he's weaning or wants his cool new sippy cup...so I pull out some freezer milk and fill it up. He downs that...so I got to pump...not much milk. For two days...not much milk. Hmm. I called the pediatrician back, and after some discussion (about formula, pumping, and trying to keep him nursing), I decide to stop taking the pills that really haven't made me feel any better. Within 24 hours he's nursing like a pro again. Yup, must have been the medication...not the cool new sippy cup.

So, here I am, not bent over in pain, but definitely not 100%. I have good days, and not so good days. I finally gave up yesterday and said, "screw it" and went for a run. I felt the best I've felt in months (and I mean months) today. Lots of energy, little pain, etc. So I ran again today. I'm sitting here with just some minor discomfort. We'll see how it continues.

Meanwhile, the pain has seemingly moved to my hands. They cramp. And cramp. And cramp. After I write (which we knew a little while back), but now after typing. Three paragraphs ago I noticed it start. Now it's making me want to wrap things up quickly. I raised this as my other "new symptom" and it of course prompted about 3 pints worth of a blood draw to check me for thyroid problems, vitamin B12 problems, and a slew of other things...which I'll find out about on July 7th...if I can get a sitter. Nothing like trying to talk about this with a crying child and one who has to touch everything, open every draw, and stand on me saying, "Mommy, Mommy, Mommy, Mom, Mom, Mommy, Ma, Mommy, Mom..."

The Croup, Stitches, and a Baptism

amop — Mon, 09 Feb 2009 01:25:16 GMT

Itâ€™s been one of those weeks, the kind of week every Mom knows is in their future, but canâ€™t plan for no matter what.

It started last weekend with a trip to my sisterâ€™s house (about an hour away) to celebrate my birthday and watch the Superbowl. Iâ€™m THAT lucky. My sister made a nice dinner, her husband had their new Wii up and ready for golf, and just as I headed up to change our youngest I realized that the bag full of clothes, medications, and other necessary items was packedâ€¦and sitting on his rocking chair.

Instead of unwinding and getting a nap in, I was calling Walgreens to get another prescription (which was nothing short of a hassle as we had just had a 3 month supply filled through mail orderâ€¦and even though I explained I was on vacationâ€¦it took my arrival at the store for the pharmacist to explain that unless I needed a vacation override I wasnâ€™t getting the prescription). At least I had some sister time on the trip. We also ran through TJMaxx to find a few pieces of clothing for the overnightâ€¦and all they had were pjs in 24 months (heâ€™s in 12) and a â€œtracksuitâ€ type of baby outfit for the daytime. Oh well. Nothing like a stress free trip, right?

Add to that a 6 month old who is teething and wouldnâ€™t sleep anywhere but next to Mom. I had 10 minutes of Wii time the entire evening. I also had about 4 hours of sleep as nursing Moms know, sleeping next to your baby is pretty much like hanging up the sign that says â€œ24 hour buffet.â€

After a sleepless night, we (my boys and I as my husband had to get off to work) joined my parents for a short visit with my grandparents. It was nice to visit with them as they havenâ€™t seen the boys since our youngest was just a few weeks old. During our visit, my eldest wound up in a very unpleasant situation as he filled his pant and got it nearly everywhere. Complete clothing change prior to jumping in the car for the ride home. We had a few more bad trips to the bathroom before turning in for the night. Didnâ€™t think much of it.

Fast forward to 3am and there in our doorway is a crying, half-choking, coughing, wheezing, miserable little boy. We quick moved the warm air humidifier to his room, grabbed some Motrin and a little juice, and tucked him back into bed once a few songs and some rocking with Mom calmed him down. He woke not much better and continued to cough through the entire dayâ€¦and Tuesday night. I called the pediatrician on Wednesday and learned that nearly three year olds can have Croup too. Fun is.

Iâ€™ve spent the remainder of the week trying to keep my hands washed, my oldest comfortable, and my youngest as far away from him as possible. We were supposed to have my youngest sonâ€™s baptism today. Guess what we had to cancel?

My oldest is still coughing and has a runny nose, but is seeming to feel a little bit better. He slept most of the night last nightâ€¦compared to being wide awake by 3am (thanks to the medication). My youngest still hasnâ€™t shown any signs of Croupâ€¦but is cutting his first tooth and weâ€™re close enough we can see it coming.

In the meantime, in trying to pick up the kitchen on Thursday night, I had a run in with a vegetable mandolinâ€¦and sliced my thumb pretty good. Called my doctor first thing on Friday (as it took nearly 3 hours for the bleeding to stop), and the earliest they could see me was at 245pm. Turns out if I had gone somewhere on Thursday night, they would have stitched the wound. Since it had been so long and the wound was pretty much closed, my doctor put some butterflies/steri-strips on it and sent me home with a prescription for an antibiotic (just in case).

Great, like my cuts heal well. Iâ€™ll probably be nursing this one closed for the next monthâ€¦along with the splits on my fingers that have naturally developed from all of the hand washing this week.

Weâ€™re waiting for tomorrow to come. Hopefully theyâ€™ll be no coughing, a tooth, and Iâ€™ll finally have tackled the sore throat thatâ€™s been coming on for a few days now. Iâ€™m off to nurse my son (teething makes him a light sleeper) and then tuck myself in.

How Do You Sleep?

amop — Wed, 28 Jan 2009 16:52:06 GMT

So I got into a conversation the other day with a Mom friend at a class we attend about how our littlest ones seem to do the majority of their nursing at night. So, how do I sleep?

Last night, like a typical night in our house these days, after dinner (I made the baby fresh applesauce for dinner and my oldest had some pasta with cheese and an appleâ€¦his choice) I brought the boys upstairs for their jammies. I then nursed the youngest, placed him very contently in his crib covered (and I mean covered) in blankets to the extent he probably couldnâ€™t move (heâ€™s taken the swaddle to the toddler level), then I cuddled in bed with my oldest reading train books.

After two long stories, we tucked him into bed and said our goodnights. The youngest down and asleep by 745pm, the oldest down and asleep by 815pm. A little later than usual, but not dramatically so. I then spent the next several hours keeping my husband company on the couch â€“ I watching reality tv (because I need to feel better about myself) and knitting while he worked. When I was pretty tired, I rambled up the stairs with a large glass of water to take my 4 pills with (Plaquenil, two vitamins, and birth control), tucked in my babies (who had both covered their heads completely with blanketsâ€¦donâ€™t ask me how a 5 1/2 month old can SO perfectly do this with a blanket no larger than his headâ€¦), brushed my teeth (to ensure the Sjogrenâ€™s dry mouth doesnâ€™t create more cavities!), and crawled into bed. I was in bed by 11pm. I couldnâ€™t fall asleep until 12:30ish, and was awakened around 1:10am for the first midnight feeding.

I have no clue why someone so tired canâ€™t fall asleep. I just canâ€™t. Then the feedings start and al I want to do is sleep. The little guy was changed and brought to me in bed (I love my husband) where he spent the next 20 minutes or so nursing. When he settled down, like usual, I planned to give him about 5 minutes of deep sleep before moving him. I fall asleepâ€¦to awaken about 30 minutes later ready to move him only for him to awaken and want to eat again. So I oblige. Then move him to his crib. By now itâ€™s about 230am. I fall back asleep. He wakes again around 5am. Is brought back in for another night cap. Nurses until 530, falls asleep, I ask my husband to move him backâ€¦he reawakens. Nurses again. Falls asleep (as do I) and weâ€™re all awakened by the alarm at 648am (donâ€™t ask). Being awake, why not nurse? Which he does until our oldest comes sauntering into the bedroom with a, â€œmorn-ninâ€ and climbs into bed demanding we put Roary the Race Car on. This part is not normal, he usually wants to go, â€œdown-dares.â€

After 10 minutes of the 4 of us in bed, the youngest is wide awake, as is the oldest, leaving my husband and I trying to crack our eyes open enough to not fall out of bed as we rise. By 745am weâ€™re all downstairs.

Letâ€™s recap, I sleep from:

12:30-1:10 (40 minutes)
1:50-2:30 (40 minutes)
2:40-5:00 (140 minutes)
5:50-6:48 (60 minutes)

Add in maybe 15 minutes of crappy sleep between then and 7:45 and we get a total of maybe 5 hours of sleep. Not horrid, but understand some of it is very light sleep as no one wants to â€œroll overâ€ their infant in bed.

This is fairly typical. Given we donâ€™t nap any more (aka, my oldest no longer naps, so I have no hope or prayer of doing so), Iâ€™m still amazed I canâ€™t sleep earlier in the night. I go up at 10, Iâ€™m still awake until 12:30ish. Every once in a while, our youngest will make the entire 8pm to 5am without waking. Itâ€™s a blue moon, but it happens. But on those nights, our oldest is usually up sauntering down the hall to the bathroom.

So, how do you sleep? I canâ€™t ignore the nightly cries from the crib, especially since I feel like he wants to eat. Heâ€™ll nurse once or twice in the morning before his nap, then two or three times before dinner, and then once afterwards before bed. I have to wonder if heâ€™s getting enough (he does eat at dinner timeâ€¦a lot). My oldest was a BIG child and at 3 months was over 19 lbsâ€¦at 6 months was over 22 lbs. Weâ€™ll be lucky if the youngest is over 19 lbs at his six month check up this Friday. Heâ€™s not tiny, but heâ€™s not the big baby we were used to.

For someone who is naturally tired because of the Sjogrenâ€™s, add in energy exerted with two children each day, and interrupted sleep at night and I have to wonder if Iâ€™m going to crash big time somewhere along the way. I have to think my husbandâ€™s lucky he can sleep through most anythingâ€¦and falls asleep very quickly. His contributions at night (maybe a total of 20 minutes) takes just that amount of time away from his sleep. Once heâ€™s handed off our son, heâ€™s fast asleep again. He even sleeps through his alarm so Iâ€™m the one at 648am poking his to death to shut the damn thing off. Which is great on mornings where Iâ€™m not already awake. Thanks, dear.

Cotton Gloves

amop — Fri, 07 Nov 2008 11:10:22 GMT

I recovered from my cold just in time to host a wonderful Halloween play date (on Halloween) for my older son's play group. It was great fun...only my son was the only one who didn't want to be in the wonderful costume I made him. Got it on him for a quick photo and then he was ripping it off. Good news is that he wore it out trick-or-treating, so that made it all worth it.

Come Tuesday of this week...my boys both have a cold. Had to cancel a weeks' worth of activities and try and reschedule a few. Seems like I'm always canceling things because one of us is sick. People must wonder how it happens that we're always sick. Nothing worse than listening to the baby try and breathe, and fumble through each breath because he's so congested. He's doing better now, but after another down week I feel like a bad parent due to all of the tv we've been watching. At least it's a lot of PBS. Yeah, doesn't make me feel much better.

I'm just SO tired that I don't have the energy to do anything for more than an hour or so at a time. That and trying to get an active 2 1/2 year old to do anything for more than 15 minutes is a challenge in the first place. We start to color, he gets board. We read a book and before it's over he's on the move. I play with him on the floor (while playing with the baby) and he's in the other room into trouble. He doesn't even really sit still for the tv, thankfully.

I just wish I could crawl into bed and sleep for an entire day. A down day. You know, the ones you used to get when you were sick...before kids. Maybe I'll ask for it for Christmas. And of course, through the back of my mind races the question, "am I so tired from having kids, or is it more related to the Sjogren's?" I know parents are generally tired, and as my baby didn't sleep more than 2 hours at a time until he was 3 months old (and he's still waking at least two times during the night), I know much of the fatigue could be from just general lack of sleep. I look forward to naptime each day...and hope and pray my older son will at least stay in his room. Got 20 minutes three days ago, nothing more since. He's a non-napper now, and although I keep trying to at least have quiet time, he comes into my room, yanks me out of bed, and says he wants to go "downdares." Too cute.

In addition to the fatigue, my mouth is split in the corners again and my hands are extremely dry (cracked and bleeding). My sweet sister loaned me her pair of cotton gloves so I could lube up my hands at night, cover them in the gloves and hope things were better in the morning. I've done that for 4 nights now and I have to admit, they're better in the morning, but by mid-afternoon after the daily chores and diaper changes, they're back to where they were. I'm planning on going to a Sjogren's meeting in my area next Sunday - a dermatologist is going to be speaking about skin problems, so that might be insightful. Helpful, I hope.

I've started losing big clumps of hair in the shower. I know post-pregnancy your body lets go of the hair that built up throughout the pregnancy, but at the back of my mind is the little voice that asks, "is this Sjogren's too?" Probably not, but you never know.

In the meantime, it's time to continue my day and maybe motivate to run a few errands this morning. Get out of the house at least, as we all have a bit of cabin fever.

Quickest Cold Ever

amop — Mon, 27 Oct 2008 14:22:34 GMT

I went from feeling just fine Sunday morning to having a nasty cold in literally hours. I don't recall colds taking hold this quickly. Here's hoping it leaves just as quickly as it came.

After spending Sunday morning cleaning my house (oh, does it feel good to clean...well, maybe as you enjoy the final product), we left as a family for two birthday parties. First one was at 2pm and by the time we left around 4:15pm I noticed my ears were clogged and I couldn't clear them. I yawned and swallowed, and drank with no clearing.

We arrived at the second birthday party around 5ish, and by 6:30pm I knew I was in for it. My nose was clogged and I was blowing my nose trying to catch it before it ran down my face. Welcome the cold.

Usually I wouldn't be nearly as bummed (I'm used to this cold after all of my colds with the second pregnancy), but we were hosting a Halloween playdate for 10 of our playgroup families this morning. Alas, I spent about an hour last night calling everyone and trying to figure out when we could reschedule. I feel just awful it didn't happen today...and that people had already made their potluck dishes for lunch. Here's hoping they hold until Friday, as that seems like the best day for everyone.

My husband actually talked me into canceling last night. I was going to wait until this morning, but he made a good point: better to let everyone know...and to not spend any more time preparing for something that was just going to be canceled anyway. So I put on my pjs and we went to sleep.

On a positive note, I think the medication is finally working for my littlest one...he slept nearly 7 hours straight, got up for a change and a feeding, then went back down for another 3 hours. He sure picked a good night to let me sleep!!

So much for my return to the treadmill. I finally was in a groove of running nearly every evening before dinner and then this hits. Will probably be another few days before I can get back on for some exercise. Oh well, took me 9+ months to put the weight on...will probably take me 18 years to take it back off!

I'm Not Going to Jinx Myself

amop — Mon, 29 Sep 2008 10:07:17 GMT

Knock on wood...last night, for the first time our little one slept nearly 5 hours straight...in his own bed! Yes, that means I actually slept! He's been doing better the last two or three nights sleeping in his crib, and sleeping a few hours straight (2-3), but has still needed the swing to rock him to sleep around 4 or so in the morning. He's cooing on the couch next to me, what a happy guy he is when he's had a good night's sleep.

Since I slept more than 30 minutes at a whack last night, I'm feeling like a million bucks. When we woke up around 3:30 this morning after his nearly 5 hour bout I felt like I could have jumped out of bed and been good to go for the rest of the day. The remaining bits of sleep I got until about 8am this morning were just icing on the cake.

I've started running again now that my neck and upper back seem to be mostly better. Still a bit sore each morning, but I think I keep sleeping in strange positions without knowing it...hopefully this sleep thing will continue and I'll actually be able to sleep without sitting up in bed. The running has just made me feel that much more out of shape, but I'm sticking with it. Might not get out (or on the treadmill) every day, but I'll get my pre-pregnancy shape back in time. More importantly, I'll get the exercise I need to keep me healthy...oh, and set a good example for my boys.

I ran about a mile on Thursday night...up hill both ways. We live on a nice quiet street that is about 1/4 mile long. Only thing is that it isn't flat by any stretch. You go down a slight hill to get to our driveway, and then it goes down even more before it turns uphill all the way to the cul-de-sac. So, to run a mile, I have to run up and down the street twice...which means up 4 hills and down 4 hills. Great workout, but I would have really liked to run more the first time out. Yesterday my husband and I took the boys to the rails-to-trails down by the river which is really scenic. I ran with my older son in the jogger while my husband trailed behind walking with our youngest in the stroller (and his coffee). I probably ran 3 miles straight, and then walked another mile when I caught up to my husband on the way back. That was a pretty good workout...and it's mainly flat. Best part, I hit the farmer's market by the car before heading home, so we had nice fresh organic veggies with dinner.

I tackled a bushel of apples and made 14 containers of applesauce last night. Ten jars canned and 4 containers for the fridge and freezer. That makes a little dent in what I need to prepare for the winter. Another batch or two and I should have enough to get us to at least the spring. My son and husband loves the homemade sauce, as does most of our family...so we eat it all of the time. This however has caused my hands to worsen. The cracking is back, and the dry fingertips really got annoying as I was trying to change diapers and dress the boys for bed. Feel like I should wear gloves or something to prevent myself from sticking to everything I touch.

I have an appointment for a cleaning today, so we'll see what the dentist thinks of my teeth. Given the lack of saliva, Sjogren's sufferers are more prone to cavities and other dental problems (great, I don't love the dentist to begin with). Add in some sleepless nights where brushing teeth might be hit or miss...let alone the floss part...and we'll see what recipe we've whipped up.

Post Pregnancy Labs

amop — Sat, 20 Sep 2008 23:17:11 GMT

I received my post pregnancy lab work today in the mail. It's been a little while since I've had blood work sent to me, so I'm curious to see how my numbers compare. However, it brought back how I was diagnosed. As I was reviewing the blood work, the first test the lab marked with an H (for high) was my immunoglobulin IgG...normal range is 639-1349mg/dL and mine is currently at 1819mg/dL. This was the marker that first threw my primary care physician, and prompted the other testing and finally a visit to the rheumatologist.

My Sjogren's Antibodies (and that's what the lab refers to them as...) were also marked H. My Ro Antibody (SSA) is >100 (that's what they entered) when normal is 0-25. My La Antibody (SSB) is 72 when normal is also 0-25. Now I'm really curious to pull out the last post pregnancy blood work and see how they compare. Maybe when I find a few minutes.

In the meantime, my neck and back are feeling better...thank goodness as between my two sons I don't think I slept more than 3 hours in total last night. Amazing how we can function with that little sleep. I'd get one down, the other would be up. I get the little one down and the older one had to pee. Little guy didn't want to sleep past 2am, so my husband took him downstairs to swing for a little while. Back up around 5 to eat, back down around 6 to swing.

I wasn't sleepy enough this afternoon to take a nap...so instead, I went outside and worked in my gardens. Most people would think I'm crazy (as my husband told me), but I find it quite relaxing and satisfying to spend time in the garden. Not only do I have some quiet time to myself, but the work I do is pretty visible. Now, if I could just keep the weeds out! I stopped gardening about 3 weeks before I delivered, and aside from a 30 minute spree where I pulled what I could before my husband caught me, I haven't touched the gardens since. I'm sure you can imagine how they look...much like my lawn. Lots of grass. And of course every time I walk by them all overgrown, I long to clean them up. At first, I couldn't bend over, and then I couldn't find the time. Now I'm taking advantage of when my husband's home and it's nice out to work out there for a little while. Maybe someday I'll have the gardens I have in my head.

At least my back and neck weren't bothering me while I was out there. I feel the ache just a little when I turn my head the right way. Here's hoping I continue to "relax" and let my spine snap back in place. Now I'm dealing with super dry hands (it hurts when I bend my fingers, especially where the knuckles on my hand are)...and cracked finger tips such that I'm once again sticking to everything. Break out the hand cream. If my son hadn't smeared my bed, headboard, and wall with the super thick stuff my husband bought me for Christmas, I might be a bit happier.

I Feel Bruised

amop — Fri, 19 Sep 2008 17:59:43 GMT

That wonderful pain in my neck hasn't gone away. I had my loving husband stretch me out like the good doctor showed me, and that didn't really help. I'm fortunate to have a sister-in-law that not only is a physical therapist, but works like 10 minutes away from our house, so she was kind enough to swing by the last two evenings to work on me. Literally, work. She was here about 30 minutes the first night, and probably 20 minutes last night just massaging (deep tissue, not that "feel good" massage) my neck trying to get my muscles to relax enough that the joints in my neck slip back in place.

Although I feel pretty good after she leaves, I feel like I'm pretty bruised within about an hours' time. At least what she's doing has loosened me up enough that I can actually move my head, and there's not much pain in my upper back any longer. It's just time before my muscles relax and I snap back into position. Here's hoping it happens soon as it's been over 3 weeks now!

The hardest part of the day is first thing in the morning...I woke up this morning and could barely move. Definitely felt it more today. At first I thought I wasn't up to take my little guys to our weekly play date, but after a little while I felt better and realized that the best place for the three of us would be with friends. My eldest played pretty well with the other little ones, and my youngest just nursed most of the time we were there. I'm really glad I went, it's nice to get out and talk with friends...even if it's in between trying to break up a tussle or two between the little ones.

Unfortunately, I didn't get the nap I was hoping for today...or all week. Last night the little guy wanted to nurse just about every hour or so, which meant I might have collected a total of 3-4 hours of sleep. Today I was able to get my eldest down for a little while, then the youngest was up for a change and to eat. By the time I got him fed, he pooped again, and my eldest woke up in a fitful crying bout. Must have been a bad dream, but he couldn't settle back down for sleep. So here I am sleepless again this afternoon.

Pain in the Neck

amop — Mon, 15 Sep 2008 23:04:17 GMT

After nearly two weeks of discomfort, my husband finally talked me into calling the doctor to make an appointment. I was able to get in this afternoon, and my great husband left work a little early and met up with me there so he could drive the kids home while I talked to the doctor without any distractions.

After a few minutes of conversation, he had me stretch out on the table and then proceeded to pull and twist my head and neck. A few questions later and he said he knew what was going on...and actually grabbed a spine prop to show me. Turns out from sleeping on it strangely the other night, I moved my spine such that the facet joint is out of line. Basically, in twisting in my sleep I moved the joint such that it's sitting on top of the spine causing a great deal of pain.

The typical treatment - a muscle relaxant and pain killer. This would make the individual relaxed enough that the joint could naturally go back into place. As I'm nursing, no such luck. Instead, he showed me a few different stretches I can do with my husband, and if these don't work in relaxing my neck muscles enough to get the spine back in order, I can either see a PT or a chiropractor. Fun is. Lucky for me, my sister-in-law is a PT, so she's going to make a house call on Wednesday if things aren't any better.

In the meantime, I made and decorated 3 cakes, whipped up two dips and a baked brie in a homemade crust for a party we're going to tomorrow at my sister's. I'm in pain, I'm just not letting it hamper me too much. I feel it most first thing in the morning, when I'm talking on the phone, and when I'm driving a car. The rest of the time I'm more tired than in pain.

6 Weeks Post Delivery

amop — Wed, 10 Sep 2008 16:01:08 GMT

I've made it to the final finish line in the birthing process - six weeks post delivery. For the first 2 weeks home, I had the no heavy lifting, no driving, and no more than once up and down the stairs a day rules. Add the no bath, swimming, or exercise (including intimacy) for the next 3 weeks, and here I am at the post delivery finish line.

I saw my rheumatologist yesterday, and atypical to most post deliveries, I have no flare-ups with my Sjogren's. Thank goodness. I couldn't imagine on top of being sleep deprived to the point that I can't open and close my eyes they are SO dry (and I'm not exaggerating), that I'd also be dealing with physical changes in my body due to the stress from pregnancy and delivery. She did an exam and had some blood work done, but overall didn't find any other changes in my being. I did talk with her about the dryness that I experienced the first few weeks, especially the part about how my mouth kept splitting open and wouldn't heal. Nothing more fun than taking a bit out of something and seeing blood on the food remaining. She said that I could have a vitamin B deficiency, so she added that to my blood panel. After donating 10 tubes (no kidding) of blood, I left there a fairly happy camper.

I saw my OB this morning for my post delivery follow-up. Nothing much new to report there. They have me down a whopping 12 lbs. Not quite what I had yesterday, but then again we had Chinese for dinner and I drank a bottle of water on the way in. I'm less concerned with that number right now. Give me a few more months and then I'll really start dwelling on the fact that I have to tackle the weight issue. My blood pressure was great (110/60), and everything looked a-okay with my incision. The doctor was as surprised as I have been that my steri strips haven't fallen off. I guess I actually listen to the physicians a little too much...I didn't try and speed along the process.

One thing that was discussed at length during my visit was birth control moving forward. This was something the doctors brought up towards the end of my pregnancy. Well, not birth control. Sterilization. That's such a harsh word. At the time, I said I wasn't yet ready to make that decision. My husband asked what was involved. He's two and through. Has been from before we were even pregnant with #1. I've always wanted four children. Everyone I've talked with assumes it's the "I want a girl" thing as we have two lovely boys. It could be, but I've always seen myself having more. Not necessarily with a gender associated.

Before delivering, my husband and I tabled the discussion, with the grounds that after a few months with the baby maybe I'd be ready to make that decision more final. Although I'd like more children, and both my OB and high risk OB have said we could, they and especially my rheumatologist have cautioned me about what the risks are. Obviously, the older I am the higher the risk of issues in general, and the more likely we would be for multiples. Nothing like going for a third and getting a fourth. Know people that's happened to. On top of those normal risks, I also have the increased risk of having a child with fetal heart block or other Sjogren's related complications, I have higher risks of miscarriage (due to Sjogren's), higher risk for flare-ups and other Sjogren's related pregnancy complications. On top of it, to be safe, I should be off of the Plaquenil at least 6 months prior to conceiving, so an subsequent pregnancies would have to be well planned. Finally, the stress on my body of another pregnancy could cause the autoimmune disease to go into overdrive. A risk I had this time around, but luckily avoided (keep your fingers crossed).

So, the conversation today laid out all of my options. There is a pill I could take (progesterone only) that is safe for breastfeeding Moms, I could go the IUD route, or I could have some type of tubal ligation (there's two methods). Things to think about. There are risks with each, and it really depends on what we see in our future. Right now, I can't tell you how I'll feel in 2 years so I'm inclined to take the pill and play it month by month. The doctor also threw out there that my husband could be sterilized...and my response is that we were aware, but that wasn't something that I could discuss with an OB. I'm going to read through all of the literature that the OB provided. Not thrilled about the thought of having the IUD, but then I wouldn't have to remember to take the pill everyday. I've also heard of a few people who have gotten pregnant with the IUD in place. Think I'd rather take the pill and know vs. just hope the IUD doesn't slip!

The thing I didn't tell her or my OB at today's appointment is the pain in my neck and back that I've had since last Thursday. Despite being given the go-ahead for all activities, I won't be doing anything strenuous for at least a few more days since I still can't hold the phone between my ear and my shoulder...nor turn my head to far enough to each side to see over my shoulder. Yeah, probably shouldn't be driving. I keep hoping each day it will be better, and truthfully, beside the blog and when it inconveniences me, I kind of forget that it hurts. Just don't have the time to dwell on it. I'm just thinking one foot forward. Change a diaper, feed a baby, keep toddler occupied while I do both. What's for lunch? Get toddler down for a nap, breathe, update blog, feed a baby, change a baby, feed a baby, and somewhere in between it all figure out and make dinner. Phew.

Will I Find My Groove?

amop — Mon, 08 Sep 2008 17:11:54 GMT

I have to wonder. To sum up the past several weeks...I'm tired. Very tired. Thankfully, my partner in crime really is my partner - my husband actually let me "sleep in" (aka, I just had the baby...who's nursing every hour) on Saturday morning while he took our 2 year old out of ear shot.

Let's see...the birth went well, as did the hospital stay. We came home, and the first week or so home my baby kept losing weight and really wasn't interested in nursing. He slept. I got some rest, but was really emotionally exhausted from constantly trying to nurse (for an hour of more at a time...so basically fighting with him) and having no success. Then all of the sudden he latched and was ready to eat...and that's all he did for about 2 weeks. He would eat for 25-30 minutes, we'd change him, lay him down, and within 5 or 10 minutes he would be ready to eat again...all night long.

We finally got into a good groove where he'd eat and then rest (whether sleeping or just content) for about a week or so more, and then he started to spit up. The occasional spit up turned into every time...to volumes of curdy milky spit up that would soak through his clothing, burp cloth, and any clothing we were wearing that was in contact. At first I thought he was just over eating, but even nursing for 10 minutes he'd spit up.

For the past week I've been on a dairy free diet. Yes, no milk, yogurt, cheese, or butter. No milk products. Do you know how many things have milk products or butter in them? Let's just say I've had my fair share of veggies and fruit. Not the worst thing as I'd love to work on the remaining 40 lbs of baby weight I have yet to see leave my body. It's working.

The pediatrician thought that by after a week we'd see some improvement if the baby really had a milk allergy (most milk allergies do go away around the year mark, and aren't a sign of lactose intolerance). Over this past weekend, the baby has been extremely fussy, won't really sleep, and when awake is screaming. He eats for 10-15 minutes, a few minutes later spits a bunch up, then screams for a little while, sleeps for 15 or so minutes, and then wants to eat again. You can just tell something isn't right. No fever, no other symptoms, so I called the pediatrician this morning as the next thing this could be is reflux (GER). We're going to start in with a reflux medication this evening, and if it's reflux we should see some improvement by the end of the week.

The only change I've noticed in the past week with the spit up is that it seemed to just be milky over the weekend (not much curd) and then today there's chunks that look like cottage cheese. Interesting, huh?

Oh, did I mention that on Thursday night I slept weird and woke up with a very stiff neck? Yeah, fun. Thinking it would go away, I just let it go. By Friday afternoon the pain was into my back so I used the giant heating pad throughout the evening. Saturday I wasn't any better...and not really on Sunday either. Actually took one of those big Motrin they sent me home from the hospital with...no help. I'm a little better today, but can't put the phone between my ear and shoulder. Can't lift my head high enough to look at the ceiling. Hurts to turn to the sides, but at least I can now. Ah, and I haven't gotten the all clear yet from my OB (as it's not 6 weeks) so I can't even sit in a hot bath. FUN.

Went to take a nice hot shower last night and my 2 year old climbed up the stairs with me. He proceeded to take his shirt off and lament "bath, bath" while I was getting my towel and letting the water warm up. He got a bath...then I got a very quick shower before he went to bed. All I was looking forward to after spending the entire afternoon cooking and baking (first time since I gave birth, so I was on a mission to get a lot made for the week) was a LONG hot shower. No go. Maybe tonight.

Tomorrow is my 6 week follow-up with my rheumatologist. Will have to tell her that I'm beyond tired (how much is Sjogren's related...we'll never know)...and that I'm so tired my eyes are SO dry I can barely blink late at night. Not much else too concerning. At least that's what I think - we'll see what she has to say.

Elephant Skin

amop — Wed, 20 Aug 2008 22:30:59 GMT

I think my son and I have finally got on a good nursing/sleeping schedule now. He is going in for another weight check to see how much he's gained in the past week tomorrow, so here's hoping that he's not only up, but up over birth weight at this point. I'm thankful that he's eating well now, except I'm missing those first few days where he slept nearly non-stop...and slept in his bassinet. Now he'll eat around 10:30pm and then we'll tuck him into his bassinet for the first bout of sleep (usually 2 1/2 hours) and once he's up to be changed and eat, he won't go back in the bassinet. Just cries. And there's nothing better than having a newborn and a 28 month old up at 2am...so I don't fight it. Either myself (during the week) or my husband (on the weekends) ends up sleeping with him laying on our chests. Last night we folded and put him in the swing for a 2 hour sleep bout. I don't want to get used to that, but at this point we both need to get more than 2 hours of sleep at night.

On another note, the skin on my hands has now crossed from dry to elephant like. Rough, rough, rough and not only looks like thick elephant hide, but also feels like it. Think it's aging me pretty quickly. I've been loading up on lotion after nearly every wash of the hands (given that's about all I do between diaper changes and trips to the potty with my son), but that's just not cutting it right now. In addition, the corners of my mouth are still splitting, so I must look like I've been living pretty hard.

He's 2 Weeks Old!

amop — Wed, 13 Aug 2008 21:41:57 GMT

Wow, time flies. I can't believe we've been home over a week...and our little peanut has been in the world for 2 weeks now. In the last week, the swelling in my lower legs, ankles, and feet has subsided (thankfully). However, I've developed a good case of dry everything - my lips are dry, the corners of my mouth have split and bled numerous times, and my hands are dry, cracked, and occasionally bleed. I've gone back to using hand cream with every wash, and I've been using the non-soap hand cleanser (Savannah Bee...which Bath & Body Works no longer carries!) for nearly every wash.

Our little peanut has had some nursing issues - just too sleepy and lazy to really nurse. We've been back and forth to the pediatrician a few times, and finally at the last visit he started to gain. Hopefully at tomorrow's visit he'll be up a bit more. In the meantime, the majority of my days are spent trying to nurse, nursing, or pumping then feeding it back to the peanut using an SNS feeder. Literally takes me nearly all day to stay on top of the feedings. Looking forward to getting to the 20 minute nurse every 2 hours. At that point I think I'll finally be able to manage on my own. Or try to!

Thankfully, my parents live just 15 minutes away, so my Mother has spent the majority of the day with me since my husband is back at work. She stays until my two year old is down for his nap...and when he's up it's nearly time for my husband to be home, so for those few minutes or hour I'm usually fine.

Good thing is although our peanut isn't the best eater right now, he's a good sleeper. We get at least 2 hours in a row, if not 3 or 4. However, that's part of the problem with nursing...by the time he's awake to nurse he's SO hungry he fights me. Think we're working our way through that and finally getting into a groove. Today went very well, haven't had to pump all day...here's hoping that continues.

The fatigue hasn't been too bad. Although I am trying to lay down and nap in the afternoon when both of the boys are asleep. I managed about 30 minutes today before our afternoon company arrived. Yesterday I got well over an hour. My husband actually called on his way home, and when I didn't answer the phone (I have the ringer turned off upstairs), he called my parents in a little bit of a panic. Luckily my Mother was home and knew that I was going to lay down for a rest. I just remember being SO much more tired with our first son. Probably because he didn't sleep. We'd have to hold him all night long...and he wanted to eat every hour for about 45 minutes...so there was about 15 minutes of time in which we changed diapers and he had a little nap.

I'm fortunate not to have had any major signs of a Sjogren's flare-up...at least from what I can tell. I'll be meeting with my rheumatologist again in a few weeks, at which time I'm sure I'll discuss what I've been going through. Hopefully she won't notice any signs of a flare-up either.

We're Home!

amop — Tue, 05 Aug 2008 18:41:39 GMT

Everything went as scheduled. No surprises here, as my husband and I are two very planned individuals. I went in to the hospital around 7am on Wednesday morning, by 9am I was walking my way into the OR and getting up onto the table for my spinal. By 915am my spinal was set and they were beginning to prep me for surgery. My husband was escorted in to find my teeth chattering - a side effect of the spinal (last time I had the nausea, so I'll take chattering teeth). He sat by my side until about 935am when the OB let us know that the team was close and if he was interested, he could stand up and watch our son being born. I was just glad he didn't pass out.

Our son was born at 940am, and they whisked him away to clean him up and check him out - initial APGAR of 8, 9 after 5 minutes. All great signs. He was crying like a mad man the whole time - what a great sound to hear from behind the drapes. The OB let us know after everything was over and they were going to wheel me into recovery that he presented ear first...like he was listening to what was going on outside the womb.

My first glimpse of him was on the scale...and as most of the people in the OR knew my first son was 10lbs 7oz, we were ALL eager to see how close our guesses were. He weighed in at 7lbs 15.6oz...so they round up to 8lbs even. He was 21 1/2 inches long - just 1/2 inch short of his big brother. LONG child with very long fingers. He doesn't look too much like his big brother, and definitely has Mom's fingers and toes (including her crooked second toe!).

Everything went like clockwork, they wheeled us into recovery for a little while and by about noon we were settling into our hospital room. He was a great nurser early on, and after his circumcision backed off a bit. We're still working on the ideal latch and a good length of nursing time, but so far so good. The doctors let us know that we could leave the hospital a day early, and given we missed our older son SO much (although he was a real trooper the days we were gone!!), we decided Saturday morning to leave so we were home in time for dinner.

That was a great decision - was amazing to see our older son after several days (we've never been apart!), and we actually got more rest at home that night than I think we would have gotten in the hospital. Unlike our older son, this peanut is a sleeper...he gave us several multiple hour sleep spells the last few nights...and he sleeps most of the day. We went to the pediatrician this morning and although he's down to 7lbs 1oz (his lowest on Friday night was 7lbs 4 3/4oz), the doctor wasn't too concerned given his pee output. We're going to get another weight check on Friday just for peace of mind, but it was nice to have a good feeding earlier today. Here's hoping that stays consistent.

No signs of anything Sjogren's related, especially the heart block. I did get a nice external yeast infection (oh joy) and my feet and ankles are very swollen. However, I've backed off the pain medication and am making due just taking it easy. I definitely had more discomfort early on with the incision, but today was able to get out to the doctor and then out to the sandbox with my older son for a little while. Definitely miss my one-on-one time with him, but luckily my husband's been able to be home with us and helping supplement my lack of availability (especially when it comes to the toilet training). He's also been a real trooper with diaper changes (think I've done 1 these past 6 days...even though I've helped with most of the others).

Here's hoping the next few days I get more mobile and back on my feet...oh, and start dropping the weight. Although it was nice to eat by day 2, it didn't really help me lose anything. Came home a whopping 4 lbs lighter. Woo hoo. Guess the swelling doesn't really help with the weight loss. I know that last time it was a few days after I was home that I finally noticed a big drop. Here's hoping it happens again. Although I'm only up 50lbs (instead of the 60 from last time)...add the 10+ lbs I put on getting pregnant and that's still a nice chunk of weight to get off. I'm in no hurry to be in a bathing suit or modeling skimpy garments any time soon...just looking forward to wearing more than 2 pairs of maternity shorts :-)

Third NST and Sleep Deprivation: 38w2d

amop — Thu, 24 Jul 2008 15:34:26 GMT

Had my third NST this morning...and they aren't getting any quicker, that's for sure. I had a 10am appointment and was there right on time...and of course, after an hour on the road had to use the bathroom. They brought me right back, let me leave my urine sample, took my blood pressure (140/60...not too bad for walking 4 flights of stairs just prior) and of course my weight. Still the same that I was on Tuesday. Phew. The number surprised the nurse - she said she would have sworn I was much lighter...compliment, I suppose.

I then was hooked up to the machine and left for about 15 minutes...during which time the baby moved twice. Not too bad, so when the nurse came back and checked on me she indicated that she'd give me another 10 minutes or so and then she'd be in to take the paper print out to the doctor. A little over 10 minutes later she came back in, saw the baby had moved once more, and said she'd let the doctor know. Five minutes after that, she stepped back in to say that the doctor would be in shortly.

Nearly 40 minutes after I was hooked up, the doctor came in apologizing as today was a big day for OB emergencies. No problem. I told her while I was waiting for her to come in the baby actually had moved quite a bit (8-9 times). She said that was great as if he hadn't moved more she would have left me on the machine for another 20 minute cycle. Yikes! She did do a quick ultrasound to check the fluid...and immediately noticed it's a little boy...shocker. The fluid looks great, and everything else is in line, so we talked about my next appointment.

Since it is so close to delivery, she suggested that it was more important for me to see the OB that was delivering the baby on Wednesday rather than get in for another NST. If I could do both, that would be ideal, but definitely not necessary. I went out to talk with the scheduling nurse, and after some debate (as the OB is only in on Tuesday...and her schedule is PACKED), we arrived at a time where I could be "squeezed in" and then canceled my NST for Monday. The negative is that I have to once again drive into the city for this appointment, but as the OB is in the hospital tomorrow and off on Monday, Tuesday is the ONLY day I can be seen.

On a separate note, the non-sleeping is really starting to deplete me. I'm just so uncomfortable at night between my aching hips, knees, and shoulders, then only being able to sleep on my sides or sitting upright. I roll every 45 minutes, get up for the bathroom every 2 hours, and just manage to get in mini-naps throughout the night. I tried to sleep in the baby's recliner (we opted for an oversized plush recliner instead of a wooden rocking chair - good move), but even that didn't seem to help things. Instead of pain in my hips and knees, I had a shooting pain down my side. Just impossible to get comfortable. At least my husband is sleeping soundly - doesn't even realize I'm up and about. Good in the sense that I'm not disturbing him, but he's SUCH a sound sleeper I'd have to wonder if something did happen, would I spend my entire night yelling for him.

Here's hoping that I get a solid few hours back to back in the next few nights or the sleep post delivery is going to start to look REALLY great :-)