Sjogren's Mom

The Story of a Mother of Two Living with Sjogren's Syndrome
I'm Asking Santa for New Feet

Yes, that's my request.  It seems that my toes and feet take the brunt of everything.  I've been nursing this blister...which continues to exist thanks to my productive 8 mile run today).  My husband always seems to find my feet with his shoes, my kids drop things on my feet without thinking, and of course lately have been stepping on the blister.  In the last 24 hours I've done my right foot in.

Yesterday afternoon as I picked up my youngest son for his nap, he hung onto the pull out drawer our tupperware is in, pulling it off the track and dropping it perfectly square in the middle of my right foot.  It brought tears to my eyes.  Cramped up my foot.  Had me surpressing words my children should not hear.  It's swollen and very bruised...probably about the size of a lime in diameter.  I didn't run last night as it hurt just to stand on it.  This morning it felt much better, but looked much worse.  As I've broken my feet three times before between the two feet (yes, three times), I know what it feels like to have a broken foot.  I've run on broken feet, so I also know what it feels like to run on a broken foot.  This doesn't feel broken.  Luckily.

After my run and something to eat, I set to work tackling my to-do list around the house while my husband managed the two children...and eventually took them to his parent's house so he could work on some of his projects.  While they were gone I scurried around cramming in as much cleaning as I could.  I tackled some lingering projects like cleaning the junk drawer and the mudroom pantry that I can't do with the kids as they'd get into SO much trouble it wouldn't be worth the effort.  I also finally cleaned the highchair.  It's been sitting waiting for a thorough cleaning before we pack it away in the basement for weeks now.  I just haven't found the time to drag it outside, pull it apart, wash it down, then pour hot water over the crannies I can get to...and anyone who has cleaned a highchair knows what I'm talking about. Food goes places no cloth can reach.  As I was taking the tray off I went to set it on our stone wall and it fumbled and fell...right on the toe of my right foot.  Insult to injury.  Literally.  It bled...and bled...and bled.  I cleaned the highchair with an ice pack on my toe being pushed down by my "good" foot.  It continued to bleed.  It's now bruised, and I'll probably lose the nail...can you tell...that's happened before.

Long story short.  I have more trouble with my feet than is humanly necessary.  My Mom suggested tonight I wear shoes all of the time.  I'm thinking that is pretty smart.  Maybe at least slippers.  Right now I'm glad I had a good run today and that I'm off tomorrow.  One more day of rest for the blister...and now the swollen foot and bruised toe.  Is someone trying to send me a message???

Posted: Sep 13 2009, 06:20 PM by amop | with 1 comment(s)
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A Bruise

The blister hasn't left town yet.  I did manage to get my run in on Thursday and didn't make it too much worse.  I was about to get suited up for my run this afternoon when my youngest pulled out a kitchen drawer...and the front corner fell smack on top of my bare foot.  Opposite foot as the blister.  And it swelled.  And bruised.  And it's very pretty and painful right now.  Thus, no run this evening.  Instead, I limped upstairs, put him down for a nap, and crawled into my bed to get the foot up.  Tomorrow is my long run (8 miles) for the week...next Sunday is a 10 mile.  Building to 12 before the big race, then I'll back off a little the week before.

My back is still worse than it was prior to the injection.  I see my pain management doctor on Monday morning, so here's hoping there's something else in her back 'o tricks.

Posted: Sep 12 2009, 09:03 PM by amop | with no comments
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Blisters

Yes, although I coat my toes with vaseline, I still manage to get the occasional blister.  Usually not run-ending.  Clip the toenails, give it day...or two...and they usually reabsorb.  Not the latest one.

The inside of my big toe on my left foot got a nice blister.  Still not sure how as my toenail on the second toe was short.  It arrived on Wednesday, and on Thursday I had my next spinal injection (it went well, thank you).  So, I had to take Thursday off - per my doctor.  I rested on Thursday, had my day off on Friday, and decided to deflate the blister on Friday morning...hoping, of course, that it would be just fine for the weekend runs.  I sterlized my needle, pricked a hole, drained and covered the remaining blister with a good bandaid.

Come Saturday afternoon where I had my 5 mile run.  I easily handled the run - relatively good time and didn't notice until the end that my blister might have resurfaced.  It did.  I began to fear the 9 mile run I had on Sunday.  I was going to run in the morning before the heat and humidity set in (yeah, it never came...).  I worried a bit, and figured the best thing to do would be to add some padding, so I rifled through the many year old first aid box at my parent's cabin up in the woods.  I pieces together some sterile gauze which I wadded up and stuck with two bandaids between my first two toes.  Then I gooped on the vaseline to the bandaid I then applied over the existing blister.  I also plastered my remaining toes with vaseline and put on my socks.  I thought the worst thing would be a popped blister...or I'd have to stop the run to remove the padding.  Worst didn't come.

I got to my 4+ mile mark, and although I could "feel" the padding, it wasn't uncomfortable.  I continued.  About mile 8 I began to realize that I might just be a bit crazy to consider the 13.1 miles as that was about 5 on top of what I had run...and I was having a hard time.  Then I reminded myself I had run quite a few hills, that I had another month of training, and that I was running with some seriously uncomfortable toes.  By the time I finished I thought I could probably have run a bit more...not that I would have wanted to.  I also realize that I ran the entire thing.  No walking.  Well, other than when I dropped my water bottle.

The news on the toe: blister is worse, but not popped.  Still not sure how it's going to reabsorb given I have to run the next three days.  Think I'll be picking up some pads or something with holes in them to use when running.  These next three runs are the shorter ones (Sunday is my long run), but there's still more than a brisk walk involved.  I feel it just walking around the house...I'm sure it will bug me running.  Wish blisters would just reaborb over night!

The word on my back...still using those Flector patches, and the injection did make things worse for about 48 hours, but it's getting better.  I feel worse than I did a week ago, but better than I did on Friday.  Here's hoping!

Posted: Sep 07 2009, 05:54 PM by amop | with no comments
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How Important is a Good Bra?

Yes, I looking for a good bra.  Not only a good, supportive yet sexy bra for my day to day needs now that I've packed up the nursing slings, but I am desperate to find a sports bra that doesn't wind up leaving me screaming in my post-run shower.  It seems like every sports bra I have tried at one time or another chafes, rubs, and ultimately leaves me raw.  Whether it's the straps that come down from the shoulders rubbing against my chest leaving marks that define the boundaries of the bra, or the lovely under-the-boobs chafing I've now got going on.  Yes.  On my boobs.  I had to apply neosporin and a large wound sized bandaid to each boob the other night in hopes I could get them to heal more quickly.

I've tried doubling up with Champion sports bras, buying those pricey hooked back bras from LL Bean, as well as a handful of the UnderArmor ones from ***'s Sporting Goods (which, by the way, they took back after seeing my chest lines).  Nothing seems to work.  I thought I had found the solution with a new Nike sports bra, but alas, this one did the above mentioned lower damage on Sunday.

My big problem (no pun intended, but it makes sense) is that I'm normally a D or DD, so the average sports bra just doesn't have enough support for a runner. Might be fine for gardening, but not for anything more strenuous.  I'm also at the inbetween stage where I'm decreasing in size as I just finished nursing my now nearly 13 month old, so I'm not the size I will be in a few months (aka, I don't want to spend a roll only to toss aside the bra because it doesn't fit in a few months).  However, I need something that it's going to mame me everytime I run a few miles...let alone the 13.1 miles I signed up for a week before my sister-in-law's wedding.  I was hoping to wear a dress that didn't include a high front and/or sleeves.

What should a woman do?  I've been applying mass amounts of Vaseline not only to my toes, but also along the edges of my sports bra.  Maybe I should buy stock...or check out BJ's largest jar.  Would welcome any suggestions!

Twelve Weeks and Counting

I saw my pain management specialist of Monday - finally, as she extended her maternity leave bumping my appointment several weeks.  Since I last saw her, my pain has changed a bit.  Rather than being pain down the left side of my neck, along my shoulder, and down my arm to my elbow, about half of the time it's a cramping, knot-like feeling just below my left shoulder blade.  Nothing too painful to go about my daily life, but definitely an uncomfortable feeling that I'd just prefer not to have.  It is worse when I'm stressed and when it's raining (believe it or not).

Well in advance of the appointment I had decided that if this pain was going to be with me the rest of my life, I could (and should) live with it.  I saw my rheumatologist about two months ago and she tried to help me out by putting me on an overnight dosage of a muscle relaxant...which just served to prompt my 11 month old to stop nursing.  That was too soon, and as the medication wasn't making me feel that much better, I discontinued it even prior to filling the prescription.  In addition, my rheumatologist wanted me to get back in the groove of exercising.  She said it would help me sleep better and is obviously important for staying healthy...not to mention helping with this dreaded residual baby weight.

The pain management specialist I saw had also encouraged me to resume normal activities (including running, which I love) once the pain was gone.  Although it wasn't gone, I was feeling the itch...and push...to get back out there.  So, one Saturday while my husband was with my kids, I laced up my sneakers and hit the trails (we have great rails-to-trails).  The run made me feel better than I've felt in nearly a year.  So I went again on Sunday.  And again a few more times during the week (with my youngest in the jogger - my oldest was at summer camp).  The cramping pain in my shoulder hasn't gone away, but it's not worse.

During a dinner out with some of my Mom friends many, many months back, one of the Moms suggested that the runners in the group run the half marathon together in October.  At the time, October was far enough away that I comically quipped, "sure, as long as my back is okay."  Well, as the months have passed by and nearly eight weeks back into a running groove I'm making my plans for that half marathon.  I'm technically 8 weeks away from the date, and wow, does that sound close.  I spent several evenings at the local bookstores back in June reading through all the running and "Even YOU Can Run a Marathon" books I could find on the shelves trying to piece together what it might take training wise to get my body ready for the race.  Back in high school and college I ran for sports and to keep in shape, and I even was talked into running the second leg of the 4x800 in college because someone was unable to run it.  As a thrower, my focus wasn't my time, but I managed to pull a good enough time in the race that the other three relay runners were able to pull out a win (over three others).  That is the only race (other than the grade school timed miles) where my time actually counted.

I've always thought it would be interesting to run a formal race, like the half marathon, just to proove to myself I can do it.  In high school I did run about 8 miles at once, and my typical "run" prior to my second child was between 4 and 5 miles at a time.  I'm not the type of person who runs 2 miles and heads back in for the day.  I enjoy running and the time to myself to clear my head and destress.  As such, getting back into the habit of running over the past eight weeks has been wonderful for my mental and emotional health.  Not to mention helping rid another 10 lbs of the baby weight.

After culling through books and websites about running marathons and half marathons, I pieced together a training schedule that I think works nicely for me and my current abilities.  I've heard from friends that you technically only need to run three times a week to prepare for the race.  However, I would like to run more, and I think in terms of beefing up my stamina, I need to run more.  It's been about a year and a half since I ran more than a handful of times.  I'm not going for a better time or looking to increase my speed, so I only incorporated one mild "speed" day into my schedule.  That's Tuesdays, then Wednesday, Thursday, and Saturday are my shorter long runs (right now between 3 and 6 miles depending on the day), and Sunday is my long run (right now I'm gearing for 8 miles this week).  I'm four weeks into the formal training program, and after talking with my pain management doctor on Monday, she agrees that as long as the pain doesn't get any worse that there's no reason I can't continue to train.

Since I'm now done nursing my son, I can take the great medications the pain management doctor has wanted to get me on since the beginning of our time together.  After I explained how my pain has changed and what it is currently like, she prescribed a Flector patch that I change every 12 hours (and wear for the next 30 days) that administers a constant and directed dose of anti-inflammatories to the affected area.  As the area moves, I move the patch.  She said after 48 hours I would start to notice a difference, and I kind of have...which is great.  Not fixed, but not as tight.  Additionally, I'm scheduled for my third epidural injection on September 3rd.  I won't be able to run that day, but otherwise, I can easily stick to my training schedule.

My major accomplishment was running a 5k on Sunday.  My town had their annual 5k race with 414 participants (183 females), and I not only made my goal of being under 30 minutes for the 3.1 miles, but I came in 5th in my age group (30-39), and 63rd overall among females.  Not too bad.  My time was 28:20, which equates to a 9:08 pace.  Still room for improvement, but I'm hoping to be around the 10:00 pace for the marathon.  Here's hoping for few hills and a much cooler and less humid race day!

Denied Life Insurance

Yeah.  Catch your attention?

That's what I'm dealing with right now.  I applied for life insurance and was basically denied by a well known company because 1) they are uneducated (and refuse to get educated) about Sjogren's Syndrome, 2) they are concerned I'm seeing a rheumatologist every 3 months, 3) I'm taking an immuno-suppressant (that is also classified as an anti-malarial and an anti-inflammatory...), 4) they think Sjogren's is basically a death sentence.

 Nice, huh?  I just compiled an overview of my diagnosis, what I'm taking, why I'm taking it, and a quick history (with links) on Sjogren's for our insurance agent.  The same guy who when told my husband's weight said he'd sail through at the preferred rate (didn't).  When he was told my weight and medical history also said that he didn't see any problems...even with the 30+ lbs I was still carrying around post baby.  And here I now am denied (but they got me coverage with the same company through the back door as a reinsurer...go figure).  I am quite angry because not only of their lack of information about autoimmune diseases (that affect 20% of the US population), but that they outright deny anyone who has been diagnosed with an autoimmune disease within the past three years.  Even though I was diagnosed nearly two decades earlier than a normal patient...and have nearly two decades lead time to get on top of this disease...and am taking a medication that should stave off the development of any additional symptoms or complications...they are still ignorant.  Just doesn't seem right.  Does it?

Back in the Saddle

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..."

I’ll Drive

I wasn’t sure whether to laugh or cry…both because of how cute and sad it was at the same time.

Friday as my children and I spent a day together at home, my oldest grabbed my car keys and headed out the door ahead of me to “unlock” the car.  It’s one of his new favorite things to do.  At three, he likes to try and navigate the key into the hole and turn it to open the doors for me.  He’s a big helper.  In both senses of the phrase.

He’s such a big helper, that as I stepped out the door behind him into the warm beautiful day (it’s summer…nevermind spring), he said to me over his shoulder as he walked to the car, “I take Mommy to da dot-tor.”

Yeah, guess where I go all the time.  Or so it seems to a three year old.  To the dot-tor.

I’m going again on Tuesday for my second spinal injection.  After a weekend of hurt…that my lovely regular strength Tylenol can’t touch…I’m SO ready to get on with things.  It’s not only spring outside, but the yard needs work, I’d love to get running and get off the rest of this stubborn baby weight, and my three year old wants me to drive trucks and run around the yard with him.

He’s probably sick of me saying, “Mommy can’t.”  I’m in my 30s, not my 90s.

He also thinks that he can “tiss” it and make it all “bedder.”  Ah, the innocence.

Fell Off the Face of the Earth

I didn’t.  Not quite.

Between the colds that have hit my household, a birthday party for my oldest, a baptism, and a huge family Easter celebration I’ve been busy.  Add in dealing with all of my appointments for my neck/back pain and I think I need an assistant.

To catch everyone up.

I threw out my back in mid-November (which we now think was related to the neck pain I had back in September). After several weeks of chiropractor visits my rheumatologist put me on a Medrol pack (anti-inflammatory) that is safe to take while nursing (because just about everything else, including pain killers and muscle relaxants, aren’t safe for the baby) it seemed my body was healing.  I was taken off restrictions at the end of January, then the family got Croup and a cold, and by mid-February I had pulled it again.  Back to the chiropractor.

Chiropractor then said it was time for a surgical consult.  I went to a neurosurgeon who referred me to a sports medicine doctor who ran some tests and determined that the protruding and bulging discs in my neck hadn’t caused any nerve damage.  The neurosurgeon also referred me to a pain management specialist who I have been working with for the past month.  Meantime, no chiropractor visits, back on most restrictions.

After my consult with the pain management specialist, her recommended course of action was a spinal injection of Depo Medrol (same thing I took in December, but the injection made it longer lasting).  Her belief was the injection would lay me out for a day (just take it easy), then after 3-5 days I’d start feeling much better.  I could feel worse before I felt better though, but the longer term goal was to get me functional.  She believed within 10-14 days (after my post-procedure visit) I’d be off restrictions and back to normal activity.  Thank goodness.

April 2nd I had the injection.  Pretty simple and straight forward.  Went home, took it as easy as I could with two little ones and a husband.  Next day could resume pre-procedure activity.  Injection site was sore, and I did get worse.  And worse, and worse, and worse.  To the point that they called to reschedule my follow-up appointment and I told them that after a week I was worse off than before the injection.

They had the doctor call me back.  She started to go through the muscle relaxant, pain reliever (Vicodin), and other anti-inflammatory she was going to put me on as I interrupted and asked if they were safe while nursing.  Oops, nope.  That’s why I wasn’t put on all of that post-procedure (which is typical…they drug you up to get your body as relaxed as possible so the injection can do it’s thing).

Today was my rescheduled appointment.  I’m a little better than last week, but still sore, uncomfortable, and my new complaint…crampy.  Yes, the neck and especially left shoulder are crampy.  Like I have a continual charley horse.  Just hard to get comfortable and stay that way.  When I spoke with the doctor last week she said take Tylenol every 6-8 hours and ice three times a day.  I tried that.  I forget to take the Tylenol until the pain is really bad, and my three year old steals my ice pack and thinks it’s funny.  Hard to sit still for 20 minutes twice during the day with two little ones at home.

Today’s solution: another injection.  I’ll have that on the 28th.  Supposedly, it could take up to three injections, especially since I can’t take the cocktail of drugs they typically provide post-procedure.  Anything is just about better than surgery, and if we can keep me at a pain level 6 until I’m done nursing in a few months I think then I’ll gladly accept the cocktail and a weeks’ vacation.  In the meantime, I don’t stop.  I just think three times before doing anything.  Constantly remind myself not to lift heavy things, run after the kids, or stretch to far.  I also spend quite a bit of mental time worrying I’m going to have another set back.  I can go to bed one night feeling great and wake up worse off in the morning.

Right now I’m working through the cold that’s running through my family.  Oh, and my right knee’s been giving me trouble (giving out when I climb stairs, etc.).  I’m falling apart.  It could be worse, much worse.

Posted: Apr 20 2009, 07:14 PM by amop | with no comments
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Bleeding on the Baby

So after nearly 3 weeks of quarantine, we left the house yesterday.  I dropped off the two kids at my Mother-in-law’s so I could go unaccompanied to visit my best friend and her nearly month old little girl.  I saw them in the hospital the day she was born, and haven’t been able to get back since because we had the plague and what kind of friend would I be to bring them a meal, a gift, and a virus that just kept on giving?

Instead, I waited until we were all healthy and I went alone to spend some quiet time with her and her beautiful daughter.  Just holding a peaceful, sleeping little girl made me start to wonder if it’s time to renew THAT discussion with my husband.  Of course I come into her house and after getting her dinners into the freezer and fridge notice that there’s blood running down my hand.  Can I hold the baby now??

My lovely dry and cracked fingers got bumped a little too hard and one of the NuSkinned splits cracked yet again, so I walk into her home and within 5 minutes she’s offering me a bandaid.  I of course have my kit in my purse and proceed to the bathroom to wash my hands…only to realize I need to cart my dripping wet hands back to her kitchen to get a paper towel.  What kind of guest would I be to wipe my bloody hands on her nice bathroom towels.  One more thing she’d have to deal with – a blood stained towel.

So there I am, 6 minutes in to my “quiet” visit with her, hand wrapped in a paper towel, fumbling through my emergency bandaid kit for a suitable sized wrap to make sure that it doesn’t spring another leak while I’ve got her precious bundle in my arms.  Knowing how dry I am, you’d think I’d have a bottle of NuSkin in my purse.  Well, that’s going to be there after this post.  Just in time for us to leave and run a few weekend errands as a family.

That is, after my husband gets up.  I took first duty with the boys so he could sleep in a bit this morning.  We’ve been up for just about 2 hours and it’s nearly 9am.  He needs his rest, week full of late nights working (1 or 2am nights…not at the office until 8 type of thing).  I’m still convinced that he’s going to come home from nursery school with a note this fall asking if my husband really makes “bacon” for a living.  Everytime he asks “where Daddy?” my response is usually, “at work, making bacon.”

Posted: Feb 21 2009, 05:48 AM by amop | with no comments
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Vitamin B12

Okay, so I’ve been reading some message boards and other thoughts about how a vitamin B12 deficiency could cause problems with “healing” and I have to wonder if this is the reason the cuts on my hand and at the corners of my mouth don’t heal…for a LONG time.

Right now I just have a few splits on my fingers, and after a few NuSkin applications I’m managing quite well.  The gash on my thumb actually healed quite nicely.  Split a few times before finally sealing.  I have been sleeping with my gloves and thick cream, but it becomes a bit unproductive when I’m up in the middle of the night several times to change and nurse my son.  Don’t want to change the diapers with the sleeping gloves on, so thankfully my husband assists with that.  I also can’t feel anything too well through the gloves, so trying to nurse and navigate things like the tv remote are difficult…so I just end up taking them off after a few hours on.  Guess it’s not the worst thing in the world, but I’m still hoping for more than one night a week sleeping until at least 6am.

Back to B12.  I’m still taking prenatal vitamins, so I’m not sure how extra B12 is going to help.  I need to do some reading up on that.  I did ask the dermatologist I saw in December about things that would help my skin and although she gave me a prescription for cream that I haven’t found to be terribly better than the Burts Bees products, she didn’t mention taking any supplements.

Although I need to spend more time reading up on B12, I did learn the following thus far:

- B12 is naturally occurring in most animal products (fish, meat, milk products, etc.)
- Man made B12 is something I’d need to look into more as it’s classified as category C and I’m nursing
- The RDA is 1microgram
- Although it’s water soluble, it’s also destroyed by water (huh?)
- As it is water soluble, you can’t overdose
- Sunshine also destroys it

Now I need to go read up on my prenatal vitamin and see how much is in there.  I do eat more milk products right now as I’m nursing and don’t want the calcium taken out of my bones.  I believe, based on my current diet, that I should be getting enough to meet the RDA.

In the meantime, I keep a bottle of NuSkin by all of my medication.  Nightly dose of healing power.

Posted: Feb 17 2009, 06:29 AM by amop | with no comments
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The Croup, Stitches, and a Baptism

It’s been one of those weeks, the kind of week every Mom knows is in their future, but can’t plan for no matter what.

It started last weekend with a trip to my sister’s house (about an hour away) to celebrate my birthday and watch the Superbowl.  I’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 packed…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 order…and even though I explained I was on vacation…it took my arrival at the store for the pharmacist to explain that unless I needed a vacation override I wasn’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 overnight…and all they had were pjs in 24 months (he’s in 12) and a “tracksuit” 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 wouldn’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 “24 hour buffet.”

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 haven’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.  Didn’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 day…and Tuesday night.  I called the pediatrician on Wednesday and learned that nearly three year olds can have Croup too.  Fun is.

I’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 son’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 night…compared to being wide awake by 3am (thanks to the medication).  My youngest still hasn’t shown any signs of Croup…but is cutting his first tooth and we’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 mandolin…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.  I’ll probably be nursing this one closed for the next month…along with the splits on my fingers that have naturally developed from all of the hand washing this week.

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

Posted: Feb 08 2009, 08:25 PM by amop | with no comments
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On The Eve…

…of turning 33…I had to actually do the math to figure out how old I’ll be tomorrow.  Not sure whether to blame that on lack of sleep, Mommy brain or Momnesia, or just getting old.

My other list of complaints including:

dry, cracked hands
split cuticles
dry lips
dry mouth
dry eyes
lovely gray hair that is beginning to overtake the brown ones!!
just under 30lbs of remaining baby weight
fatigue
and never enough hours in a day

On my list of things to be thankful for:

a wonderful, loving husband who is right now in the kitchen cooking dinner for 9
two energetic and lovable sons that make every moment enjoyable
my health (better back, overall good health, etc.)
my extended family who are always there for me
my wonderful friends who not only remember my birthday, but check in just because
my freedom (as one of our family friends sits in Afghanistan representing the US)
the financial stability such that I can stay home full-time with our two sons

There’s many more things I’m thankful for, but I think you get the picture.  The slight inconveniences of life (and life with Sjogren’s) are far outweighed by the joys of life.

I received the good new last night at my chiropractor appointment that I’m well enough to start jogging…YEAH.  That will help with at least one of the things on my complain lists.  I also don’t need to go back for at least 2 weeks.  Here’s hoping my 33rd year just keeps getting better.  I’ll be buying the hair color once I’m done nursing…

How Do You Sleep?

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 apple…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 couldn’t move (he’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 – 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 blankets…don’t ask me how a 5 1/2 month old can SO perfectly do this with a blanket no larger than his head…), brushed my teeth (to ensure the Sjogren’s dry mouth doesn’t create more cavities!), and crawled into bed.  I was in bed by 11pm.  I couldn’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 can’t fall asleep.  I just can’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 asleep…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 it’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 back…he reawakens.  Nurses again.  Falls asleep (as do I) and we’re all awakened by the alarm at 648am (don’t ask).  Being awake, why not nurse?  Which he does until our oldest comes sauntering into the bedroom with a, “morn-nin” and climbs into bed demanding we put Roary the Race Car on.  This part is not normal, he usually wants to go, “down-dares.”

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 we’re all downstairs.

Let’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 “roll over” their infant in bed.

This is fairly typical.  Given we don’t nap any more (aka, my oldest no longer naps, so I have no hope or prayer of doing so), I’m still amazed I can’t sleep earlier in the night.  I go up at 10, I’m still awake until 12:30ish.  Every once in a while, our youngest will make the entire 8pm to 5am without waking.  It’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 can’t ignore the nightly cries from the crib, especially since I feel like he wants to eat.  He’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 he’s getting enough (he does eat at dinner time…a lot).  My oldest was a BIG child and at 3 months was over 19 lbs…at 6 months was over 22 lbs.  We’ll be lucky if the youngest is over 19 lbs at his six month check up this Friday.  He’s not tiny, but he’s not the big baby we were used to.

For someone who is naturally tired because of the Sjogren’s, add in energy exerted with two children each day, and interrupted sleep at night and I have to wonder if I’m going to crash big time somewhere along the way.  I have to think my husband’s lucky he can sleep through most anything…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 he’s handed off our son, he’s fast asleep again.  He even sleeps through his alarm so I’m the one at 648am poking his to death to shut the damn thing off.  Which is great on mornings where I’m not already awake.  Thanks, dear.

Put Your Gloves On

While it is cold enough where I am to literally freeze your tongue to a pole (see A Christmas Story), it’s definitely cold enough for mittens and gloves.  Which I wear every time I leave the house…and also to bed.

I did make it through my best friends’ baby shower without any further damage to my hands (thanks to the gloves and LOTS of lotion).  She then surprised us all by delivering nearly 3 weeks early, just days after the baby shower.  Talk about timing!

My hands right now are just REALLY dry…makes me look about 8 years old.  I’ve been sleeping with my gloves and lots of lotion at night and it does seem to help, except it’s difficult to work the remote, change diapers, and nurse with those gloves on.  Then as soon as I’m up in the morning and the gloves are off, my hands are under water nearly all day.  Between dishes, laundry, diapers, potty time, and other household duties, it’s nearly impossible to go more than 30 minutes without submerging my hands.  Believe it or not, I’ve even held off going to the bathroom because I just put lotion on my hands.  I usually wait and time it with a diaper change or trip to the potty for my older child.

I did have a follow-up visit with my rheumatologist the other week, and besides the dryness, we discussed a ganglion cyst that has developed on my left ankle.  Turned up a few months ago and has gotten progressively larger as the days have passed.  She didn’t think too much of it, but did send me to xrays to confirm it wasn’t anything other than a cyst (which it was).  Her prescription – to go to a special store about an hour away to get fitted for shoes with better arch support.  Arg.  I love my clogs.  I’m in slippers most of the day.  What kind of ugly shoes are they going to have for me?  Not to mention I’m a 12m, so the selection at that size isn’t all that great.

I did call the other day to confirm they actually carry my size before I make a trip there and find out that they can’t help me.  She had also suggested arch supports for my shoes, so maybe they can start there and we can see how that helps.  I guess between the two pregnancies and the extra baby weight I’m still carrying (but whittling down thanks to another bout with Weight Watchers and some willpower) my arches have started to let go.  I know it’s only going to get worse, especially when I’m able to start running again…which is why I’d prefer the arch supports as I can tuck them into my sneakers.  I’m VERY picky about sneakers as there’s just one brand (Nike) that I’ve found is the most comfortable/best fit for my long narrow feet.

Well, we’ll see how soon I can get to that store as my weekends are packed and it’s not something I’m going to try alone with two small children.  That’s a recipe for either a snap (wrong) decision or a complete and utter meltdown on all of our parts.

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