Sjogren's Mom : Dry Eyes

On The Eveâ€¦

amop — Sat, 31 Jan 2009 18:58:15 GMT

â€¦of turning 33â€¦I had to actually do the math to figure out how old Iâ€™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

Thereâ€™s many more things Iâ€™m thankful for, but I think you get the picture. The slight inconveniences of life (and life with Sjogrenâ€™s) are far outweighed by the joys of life.

I received the good new last night at my chiropractor appointment that Iâ€™m well enough to start joggingâ€¦YEAH. That will help with at least one of the things on my complain lists. I also donâ€™t need to go back for at least 2 weeks. Hereâ€™s hoping my 33rd year just keeps getting better. Iâ€™ll be buying the hair color once Iâ€™m done nursingâ€¦

Pink Eye

amop — Wed, 12 Nov 2008 10:06:34 GMT

When it rains it pours. First I got the cold that moved our Halloween party for our play group. I got better, we had the party, went trick-or-treating, made it through the weekend, and then my boys got the cold. They got better, we had a good weekend, and now I have pink eye.

Monday afternoon I thought something was up as my eye was very irritated, but when I woke up yesterday morning and couldn't open my eye, I knew what it was. Took a few minutes in the bathroom with a wet warm cloth to open things up. I called the doctor and they were able to get me in at 2:30pm.

Although my "dry eyes" aren't too bad on an average day, add pink eye to the mixture and I could barely blink without it feeling like someone had poured sand in my eye. Very gritty and painful. My vision was also very blurry...which is pretty normal with pink eye.

I have one of those nice ol' country doctors who has a family practice. Has the baby scale from the 1950's in the examination room. Comes in and has a conversation with you, takes his time, and educates you in the process. Not the doctor for everyone as some people want to get in and out. I, however, owe it to him for my very early diagnosis with Sjogren's, so I'll be a patient as long as I can still drive to see him.

He walked in yesterday afternoon and asked me how I was doing. I replied, "not too bad, and you?" His response: he had spent the last few hours waiting for the mail to come. My response: I was just at the post office and wondered why there were no cars in the parking lot. We both said: Veteran's Day. Duh.

He then asked me what brought me in, so I looked at him and said, "I think I have pink eye." He asked me when it started, I filled him in on the morning with the eye stuck together. Mentioned that my husband looked at me and said, "whoa." The doctor commented that all men should look at their wives and say "whoa" every now and then. I clarified it was more of a "whoa (I want to run to the bathroom and wash my hands" vs. a "whoa (don't you look beautiful)." We both had a good laugh.

I also mentioned my husband's offer to help me open my eye, and that I had declined and opted for the wet warm cloth. The doctor said that was a good one, as separating the eye would usually result in pulling out some eyelashes. He then asked me if we've been sick lately. Seems that pink eye and the cold run together. Sometimes one member of the family will get the cold, another will get pink eye. So, this is still lingering from our colds the past few weeks. However, he also filled me in on how there's like 22,000 different viruses that cause colds and only about 18-20 different viruses that cause pink eye. Once you have one of the viruses, you won't have it again. So while you can have cold after cold, it's always a different cold. Same thing with pink eye, once you have one case, you'll never have that same case again. However, that doesn't mean you can't pass it to other people.

He then proceeded to ask me if my kids were in daycare. Please keep in mind what I'm typing below is directly from my doctor, not my beliefs. I responded that I'm fortunate to be at home with them (thanks to my husband). He went on to explain that if it were the 1950s where most women were home with their kids and my kid had pink eye, we'd leave the doctor and then not leave the house for the next 5 days. My kids would stay home from school for a full week to ensure not only that they were better, but no one else got pink eye. Now a days, since many women work and there are pressures (both from the employer and those women put on themselves) to be at work, parents feel the urge to load their kids up with Tylenol and ship them off to daycare. Then they go into work and wait for the call from the daycare saying something's not right. This enables them to "show up" at work, so at least they "made the effort." Then they take the kid to the doctor, get the prescription for antiBIOTIC eye drops (keep in mind this is a virus) and go home for the rest of the afternoon. Daycares, to cover their rearends, stipulate that the child has to be on medication for 24 hours before returning to daycare. However, since the antiBIOTIC drops just soothe the eye (take away the redness) and prevent secondary infections (like sties) they don't prevent the pink eye from spreading. It takes 4-5 days for the virus to run it's course. You're technically able to "share" the virus the 3-4 days before you are at your worst, and then 4-5 days afterwards.

So, his insight is that doctors are now just there to cover the legal issues rather than get the families to take care of their children. Afterall, most kids with pinkeye return to daycare the next day and it typically spreads like wildfire. The daycare's response: they're all on medication. That phrase takes care of everything. If you're on medication (even though it won't treat a virus), you can't pass what you have along. FALSE.

His advice to me: stay home or take my kids out to all of our play groups and get togethers and pass out his card. If the adults are my age, there's a 50/50 chance they've already had this virus and won't have it again. Most kids haven't and if there's enough contact (or their resistance is down) they will get pink eye...or the cold caused by the virus. My thought: I'm staying put. Nothing worse than passing things around, and I'm one of those Moms who hates it when sick people leave their house because they feel they have to. Like all of those sick co-workers I had during my pregnancy who would I'd overhear telling people how they felt like crap, and a) would go home early, b) didn't have any more vacation days to take sick time, c) had to get something out so they came in even though they felt lousy. Thought they were troopers, but from my perspective they were just incubating and passing along their misery to the rest of the workforce.

I left the doctor's office with quite an education and that prescription for drops to soothe my eyes and prevent the secondary infection. As they don't make me unable to share my misery, I'm canceling all activities for the week. Also makes me think more about how I should keep my kids away from anyone who has been sick within the past 3-4 days, not just the last 24 hours.

My eye is feeling better, and it's looking like it's just my left eye right now. Woke up able to see this morning, so that means 4 days from yesterday is Saturday when I can be out and about. Now I have to start canceling our dates for the remainder of the week.

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.

House

amop — Wed, 22 Oct 2008 00:09:05 GMT

Did anyone catch tonight's episode of House..."Lucky Thirteen?" If you're unfamiliar with the tv show House, it's about this nasty, totally un-PC physician at a NJ hospital named Gregory House. He has the knack for diagnosing all of those cases that no one else can - the medical mysteries if you will.

After watching tonight's episode...about this woman who had a bunch of unexplained symptoms including seizures, clotting problems, cysts on her lungs, massive fatigue, and other complaints, I was a bit shocked to hear her diagnosis...Sjogren's. Huh? Yes, she was diagnosed with the autoimmune disease not by all of the above mentioned issues, but because her lips were dry and she couldn't cry. House actually cut an onion and held it in front of her face...no tears. What they didn't show is that you still have that nasty stinging reaction though. Tears almost make that better in some sense.

So, the medical mystery for tonight was what I deal with every day. Kind of strange to see it played out on television, boiled down to symptoms that could fit a number of different diagnoses (including one where they told her she was going to die). Interesting I wasn't aware that seizures and cysts on my lungs were possible ailments associated with Sjogren's. Seems I have some more research to do.

In the meantime, I've started counting the cracks on my knuckles where I'm bleeding because my skin is so dry. Had 6 on one knuckle, think that's a record. If you can't laugh at it, you'd go insane. Funny thing is that while I was sewing my youngest son's Halloween costume tonight and my knuckles stuck to it the thought ran through my head, "boy, I sure hope I didn't get blood on the dog costume." Time to buy some of that NuSkin.

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.

36weeks

amop — Tue, 08 Jul 2008 23:56:31 GMT

I'm quickly approaching the finish line, but have NO ambitions of having things happen prior to July 30th. I am getting to the point where I am seriously wondering how, with so little energy and such an active 26 month old, I am going to be able to productively (or even non-productively) care for 2 children at the same time. I know every Mom does it...but right now my energy level is non-existent...especially after lunchtime. I just don't want to move. I'd prefer to sleep, but then I'd be "sleeping on the job."

We started off the long weekend with my husband's company's annual party at a resort-type place about an hour from our home. This is the third year that we've gone to the same place, and we usually have a pretty good time. As usual, my husband immediately signed himself and a co-worker up for the bocce tournament. Not that we play...ever...just that it's a tournament. Oh, and he beat the managing partner of the firm the first year to win the title.

They usually play about 14 to 16 pairs of people, but this year for whatever reason there might have only been about 10 or 12 interested teams. I was thinking it would make it go quicker...nope. While my husband played bocce, I toured the bounce houses with my son...who didn't want to bounce in them. Then we spent about an hour in the kid's pool checking out the filter intakes and every leaf and piece of debris in the pool. That is, until he realized that there was a big pool right next door and then he wanted to go in the big pool. As I'm so big and this was my husband's office, I didn't even bring the suit from the car. So I spent about 20 minutes negotiating (and sweating) with my son until I talked him into going to find Daddy.

Daddy, believe it or not, was still playing bocce. My son wanted to play too. Yeah, that was fun, trying to keep him out of the dirty pits. Eventually there was a little lull in the games, so my husband played with him for a few minutes, then the finally tournament started pitting my husband and his co-worker against another team. For a few minutes my son occupied himself with his trucks and cars...in one of the adjoining pits. Then he wanted "in" on the game, and promptly walked onto their court and picked up the little white ball (yes, I'm not a bocce enthusiast, so I have no idea what it is called). Thankfully one of the players was able to get it back quickly and replace it...however, my son just wanted to pick up all of their balls and roll them around.

Well the tournament ended around 1:15pm (after starting around 11am), so by that time I was purely exhausted from trying to stay one step ahead (or at least even) with him. My husband led him down to get a pony ride before changing out of his swim attire and getting some lunch. The pony was a hit in line, but a no-go once it was his turn. My husband wrestled with him in the bathroom to change out of his swim suit outfit and into street clothes before having a quick bite to eat and hitting the road for the drive to NH.

Although we left just after 2pm, we didn't get into my parent's cottage in NH until around 630pm...long drive, some traffic, and a few stops. An entire week's worth of packing, planning, organizing, etc. was moved from our car into the small cottage and thus began our weekend. The cottage has no AC and just three rooms...so it heats pretty quickly and with the humidity I think I didn't stop sweating until I climbed back into the car to drive home on Sunday night. My son loved being near the water, being on the dock, in the boat, etc., and thus each time we were outside I spent a great deal of time trying to ensure that he was safe.

My family is great at helping me with my son - taking him to the potty, watching him while he was outside running around, etc. However, my husband, Father, and brother-in-law love to fish, so each morning they left just around 7 for about 2 hours of fishing before breakfast, and each night they left around 7 for an hour and a half or so of fishing until dark. That's a long time to be without your main partner...and an active toddler. Oh, did I mention that the fireworks on the 4th and 5th scared the crap out of my son...and he had a tough time going to sleep, and staying asleep. The other thing is two of the three nights he wet the bed (one through a disposable)...something he hasn't done in LONG time. Needlesstosay, it was a good, but long weekend. I was thoroughly exhausted, but thrilled to watch my son and husband have such a great time.

Yesterday was my appointment with my rheumatologist...and besides being exhausted and melting in her office from the humidity, everything looks good. I've got just a little swelling, but no other major symptoms. She cautioned me that during the final weeks of pregnancy and first week or so after birth would be the time I would be most likely to flare up...so I need to get my rest, drink my fluids, and get the feet up as much as humanly possible. I could notice a change in my dryness (eyes, mouth, etc.), fatigue, swelling (which could signal kidney problems), as well as some other things. Something to keep in the back of my mind...but not something to focus on. Also, our pediatrician is going to need to monitor the baby's heart for the first few appointments to ensure that everything is still okay (even though the fetal heart block wasn't detected during the pregnancy, problems could surface in the weeks after). All-in-all it has been a good pregnancy (despite the heartburn I'm experiencing now!), and I really don't have much to complain about...thankfully.

Can I Really Be This Tired?

amop — Tue, 06 May 2008 22:54:33 GMT

Well, it's been over a week since I put myself back on the every day dosage of Plaquenil...and now I'm not exhausted by mid-afternoon like I was before, but I'm out like a light before 930pm. I've fallen asleep on the couch with my husband working right beside me the last half dozen nights in a row. Can't even make it through an interesting program. Given my son's finally down and asleep around 845 or 9pm (we put him down earlier, but he doesn't settle down and stop playing his mobile and talking until then), I pass out pretty quickly once I'm seated.

My husband kindly wakes me around 1130pm or so and walks me up to bed...as I'm so tired I can barely open my eyes. The shock of it all...is that when my potty training son runs down the hall at 630 or 7am ready to hit his potty, I can barely motivate to get myself out of bed. Could easily stay in bed another 2 hours without a problem.

I think part of it is the constant waking I experience throughout the night. For all of you who have never been pregnant...just wait. No one really tells you that after about the first trimester you only sleep about 45 minutes to an hour at a time. You wake either because your arms and/or legs have fallen asleep or have cramped up as you've been laying on that side during the previous sleep cycle. You wake, heave your body onto the other side, and then take a few minutes to work out the cramping and discomfort before finally falling back asleep. How about waking because you're laying flat on your back...which is strongly discouraged as it prevents proper blood circulation...and you freak out wondering how long you've been on your back...so you flip onto a side and try and get yourself back to sleep.

Don't even start me on the whole nightmares and strange dreams that accompany pregnancy that would keep you up for a while pondering how your mind put all of that together.

As I have to lay down and get my feet up at least once during the day for at least 15-30 minutes, I'm now spending the afternoon "nap" time resting instead of getting dinner ready, picking up, or working on my blogs. Bummer is that my son's web site has taken a bit of a backseat these past few months. So as I sit here and type tonight I know that I should try and motivate to upload some new photos and news to my son's site, I should pick up the toys scattered throughout the house, iron my husband's shirts (not to mention the holidays worth of table cloths that have accumulated on my ironing board instead of being neatly pressed in my cedar closet), and a host of other things. We'll see just how much I get to...it's nearly 10 (so past my bedtime), and I still have some things to pull together for an early morning departure to the zoo tomorrow. Think I'm going to have to call it a night soon as my eyes are starting to get so dry it's painful to blink. Yippee.

16 Weeks

amop — Tue, 19 Feb 2008 14:11:23 GMT

I'm officially 16 weeks today, and as of my ultrasound last week, the baby has now "caught up" to the measurement. Earlier on, the baby's development was about 4-5 days behind (not surprising as I ovulated late), but as of last Wednesday, I was measuring 15w1d and I should have been 15w1d. Yeah.

I had another appointment (quick in and out) yesterday with my primary practice. Everything sounded great, and the doctor (this time I saw the OB that delivered my son...and predicted he was BIG) mentioned that feeling some "pulling" when I sneeze or cough or laugh is totally normal. Good to know, as several times in the past few weeks I've laughed and had to hold my stomach because it felt like it was pulling. From what the doctor explained, it's because that area has already been stretched out so it will feel like I've got some tightness from time to time.

I was thinking the other day about something the ultrasound technician said during my appointment this past Wednesday. It's been bugging me, but at the time, I just tried to laugh it off. While the doctor was measuring the baby's heart beat, the technician was looking on. The doctor asked me what symptoms I've been experiencing, and I replied that it was just the dryness and fatigue right now - dry eyes, mouth, skin, etc. The technician's reply was something to the effect of, "maybe I have it too as I'm dry with this weather."

First of all, I can kind of understand people trying to sympathize and relate to being dry. It's natural, and yes, at this time of year most of us have dry skin and need a humidifier. However, are these people also so dry that when they inhale their tongue sticks to the roof of their mouth because there's no saliva? Do they wake in the middle of the night because their mouth is so dry that their tongue has split down the middle? How about having eyes so dry that it feels like sandpaper every time you blink?

I recognize that many people try to understand what someone's going through by putting themselves in the same situation. However, in thinking about the technician's response (and the glare the doctor gave her) I would like to think that those in the medical profession would be more professional about these types of things. Ha ha. But come one, don't trivialize what someone's going through. I'm fortunate enough that my symptoms are relatively minor (I'm not in organ failure, I don't have cancer, I'm not blind). However, imagine someone who did have more severe symptoms or was more worried about their condition receiving the same response. Almost like the one I got from the GYN I first saw who basically accused me of self diagnosing Sjogren's because she didn't have the medical diagnosis on paper - a slap in the face.

I'm fortunate that all of my friends and family have been sensitive (if not humorous) about my situation. My sister says that everyone has something they have to deal with - so this is my something. She's also the one who asked me to cut the onions this summer as with fewer tears, I'm less likely to cry when cutting an onion (don't worry, my eyes still sting, they just don't water nearly as much as a normal person). Funny. Everyone needs a little humor...and a little supportive understanding (not belittling).

Anyone Thirsty?

amop — Sat, 19 Jan 2008 02:41:00 GMT

As I sit here and type this evening, I'm on my third 16 oz glass of water in the past hour. Can someone tell my why basically overnight I can't seem to drink enough to keep my tongue from sticking to the top of my mouth? I've noticed over the past few nights that my mouth is VERY dry. I bring a large glass of water to bed with me, and take a fairly decent drink with my prenatal vitamins, so when I lay there and wonder why there's barely any saliva in my mouth I begin to think maybe I'm not drinking enough.

Today I decided to be more aware of what I was drinking. In addition to my bowl of cereal, I had 2 16 oz glasses of water before lunch, one afterwards along with a gingerale, another glass with dinner, and here I just downed three more...after having a cup of cocoa (got to get that calcium). If I do the math, that's about 132 oz of liquid today...that's 16 8 oz servings. I'm having twice that required of a normal adult and I'm still dry. I'm also realizing it will take at least one more large glass to get me to bed...and how well can one sleep with 4 16 oz glasses of water in their body. I have a feeling I'll be waking up in the middle of the night a few times.

I'm not eating salty foods too much (although the Chinese tonight was yummy, I had more white rice than anything else...appetite still doesn't rival my norm). I'm getting as much fruit and veggies in there as possible, so I really shouldn't be this dry. Could it be Sjogren's (most likely)...could it be the womb requirements (probably has something to do with it)...how much water can one drink without getting sick? Isn't there a way you can get water poisoning? The girl that lived next to me in college got Vitamin C poisoning (after eating an entire bottle of Vitamin C tablets...because they tasted good). There recently was an article about how a teacher made her class sick because they each tried to drink a gallon of milk. How much water does it take to be too much?

My eyes are dry, but not as dry as I would have expected them to be at neary 1am and being as thirsty as I currently am. At least it's keeping me from eating crap this late at night. Not much room left in there with all of that water. As I sit here I'm getting that feeling on my tongue that you get when the dentist holds it between gauze or cotton balls...that dry, tacky, nearly senseless feeling. Fun is.

Fatigue Sets In

amop — Tue, 15 Jan 2008 13:47:00 GMT

I've started to notice over the past few days that the morning sickness is definitely getting better. Not so much from mid afternoon until dinnertime, but I do have some after dinner. I'm eating though, and probably making up for lost time. However, as the morning sickness has subsided, I'm feeling the fatigue set in.

I remember with my first pregnancy being so tired that I would crawl onto the couch after dinner and wake up in just enough time to see my husband shut down his laptop and get ready to head up to bed. I worked LONG hours up until I was pregnant, and would have normally been sitting right down the couch from my husband with my laptop out writing some report or editing materials. That pretty much ceased the first few months of pregnancy. Just didn't have the energy.

So here I am starting to feel tired, and unlike last time around, at least I can lay down mid-afternoon and nap when my son naps. That's been a bit of a savior, and has enabled me to last a bit longer at night. However, with the dry eyes I'm not only noticing I'm ready to lay down, but that I need to close my eyes. Tried to enjoy We Are Marshall with my husband the other night...first movie we've probably watched together in months...and of course I fell asleep just after they lost their first game. He thinks it's comical I can't make it through a movie...or most tv shows if I do lay down for a bit.

I'm also taking full advantage of the morning tv situation. My husband brings our son into our bed a few mornings a week when he gets up to shower...as my son's already up and saying "down, down, down" (meaning he wants to go downstairs). He'll sit with me and watch Disney for around 30 mintues while I get a little more rest. I'm trying to limit the tv during the day as there's really not much worthwhile on and I'd rather have him learn to occupy himself or do activities together. We did puzzles yesterday. Nearly every puzzle in the house. He loves puzzles. We also worked with some flash cards that show basic objects (like apple, star, frog, truck, etc.). He got those down pat. Can't really say the word, but he can find the object when I lay all of the cards out for him to choose from. We tried working on the alphabet this morning with our blocks, but there wasn't any interest.

I'm tired enough right now (just around noon) that I'm already wondering how soon he'll go down for a snooze this afternoon. I am doing some consulting right now, so I usually try and work for the first part of his nap, and then try and catch 30 minutes on the backend. Just enough to keep myself going. And I yawn. My rheumatologist said the meds should help with the fatigue...as it's also a symptom of Sjogrens...so I've got it two fold. However, I have at least another week before I can start them given she said the 12 week mark is the safest time to start Plaquenil.

Last night I crawled into bed and within a few minutes of snuggling with my husband, I cramped up. Slept most of the night sitting up as that was the most comfortable. Felt the cramp with each breath in, so I have to wonder if I pinched something. However, no matter how I lay or stretched out it didn't go away. Had some minor cramping this morning, so I decided after breakfast to jump in a hot shower and that has helped a bit. Still a bit achy, but it's nothing too bothersome. Just noteworthy.

Twelve Weeks

amop — Fri, 28 Dec 2007 16:45:00 GMT

I met with my rheumatologist this morning for my first appointment after finding out I was pregnant. Overall, a simple visit - no blood work or labs required. The labs from my last round of blood work indicate that my SSA (La) and SSB (Ro) levels have remained the same, so that's a good thing. While I haven't noticed any additional symptoms, it does appear that my knuckles are getting more inflammed (rheumatoid arthritis). I don't feel it now, but that could be what was contributing to the issues I was having earlier with hand cramps while writing.

We discussed being on Plaquenil and she's suggesting that I wait until the 12 week mark vs. 10 weeks just to be on the safe side to start the medication. She said that the 10 week timeline for development was a pretty good gauge, but in her practice she usually waits to get through the first trimester. Especially since I'm having morning sickness and upset stomache is one of the possible side effects. As is a rash. Two things I have to watch out for and call her if I notice. I raised the issue of titration with her as I seemed to recall that she wanted to start me on a lower dose and work up to a stronger one. She agreed, and after checking her notes realized that when the mail order pharmacy filled my prescription, they didn't accurately write in her directions. That's going to be something I raise with them in the next week (when I have time to write that email). I'm going to start by taking 1 pill a day for 2 weeks to see how my body reacts to the medication. Assuming everything's okay, I would then go up to 2 pills for an additional month, then back down to a maintenance dose of 1 pill a day. She'll monitor me throughout the process to see how it's going, but this should be sufficient to keep my symptoms from developing any more, and to hopefully alleviate some of the symptoms I'm already feeling (like the fatique and dryness).

She did ask if I was getting enough rest, especially considering the morning sickness bouts I've been having. I kind of chuckled and said that I was getting what I could with a toddler at home. She again reiterated it was good I wasn't working full time, and that I should lay down whenever I feel tired or naseauous. Hah. That's a good one. She commented that I looked fairly tired and my eyes were extremely dry. Two things I already knew, but felt a bit like she was pointing out the impossible. Try and rest whenever I can. I don't want my son to be a tv junkie, so I am hopeful some of the toys he received for Christmas will enable me to "lay down" when I need to, but keep him occupied while I rest. We'll have to wait and see. He does pretty well playing by himself, but wanders quite a bit in doing so. I'm also going to start using his nap time as a time for me to rest instead of cramming in housework. Something's got to give, so I guess I know what that will be.

Dry Eyes

amop — Sun, 02 Dec 2007 00:00:00 GMT

I'm starting to notice just how dry my eyes are. My husband surprised me with tickets to Wicked last night - what a fabulous musical! I've read the book (actually back in college a friend of mine recommended it, so that was over 12 years ago...), and although it wasn't very true to the story, it was very entertaining, had an amazing set, and the costumes were unbelieveable. What artistry.

However, I've been going and going and going for weeks, and was looking forward to an early bedtime last night instead of a rush to pick up the house, make dinner, get showered, and out the door to make the 8pm show. Although I had a wonderful time and enjoyed the entertainment, during the middle of the second half I was fighting to stay awake...and as such, I began to notice just how dry my eyes were. Focusing and trying to pay attention was difficult, as was trying to ignore the sand paper feeling I got with each blink. I can fight off the yawns, but what can you do when it hurts to actually blink? It's not like you can fight off the urge to blink. It just happens. And happens. And keeps happening.

So, after about 30 minutes of mild discomfort, the musical was over and we took our brisk walk to the car. I mentioned to my husband that I was tired and my eyes were dry. His reaction? Rub them a little to get the tears going. Ah, yeah, hadn't thought of that. Oh, that's right, I have Sjogren's...and a symptom is dry eyes. Wonderful. As I sit here typing, I've got that dry eye feeling again...like my lids are glued to the top and the exposed part of my eye is coated with dust. Irritated. At least that is how it feels.

I realize that there are products out there that will help, and I'm sure I'll break down and look into them. At this point in time, I don't want to let this run my life. However, I did receive a very nice gift from my MIL, one of those U shaped pens that arthritis sufferers use to alleviate some of the discomfort and cramping they experience when writing. My SIL had shared a few websites that offered these types of "aides," but I just hadn't gotten around to doing much more than complaining. I have to say it does make a world of difference. That, and my 19 month old son like chewing on it. I guess serving two purposes is a good thing. Should probably put another one of these on my Christmas wish list as it would be a good idea to carry one in my purse too.

To answer the question, yes, I have been wearing the wrist brace and although it does seem to help, the pen helps too. I have noticed that prolonged use of the mouse definitely irritates it, but as I can't really do to much wearing the brace, I grin and bear it and try and recover in the evenings. Little by little I'm learning how everything I do impacts my life now, and what I can do to prevent some of these irritations...or lessen their impact.

How I Was Diagnosed

amop — Wed, 17 Oct 2007 17:19:00 GMT

Iâ€™ve been active and in great health all of my life â€“ I played sports through high school and college, went to all of my regular check-ups, and by the time I was married didnâ€™t really have any medical issues other than seasonal allergies. Iâ€™ve never been skinny, but by keeping active and watching my diet I was able to move from "slightly overweight" to "normal weight" on the BMI scale a few years prior to getting pregnant.

I gained about 10 pounds just getting pregnant (due to a higher protein diet - yes I was one of those Moms-to-be who was very conscientious about what I ate) and another 60 pounds with the pregnancy. I gave birth to a perfectly happy and healthy 10 pound 7 ounce baby boy in 2006 - it was a scheduled c-section as they knew he was "big." At my six week follow-up visit with my OB, I was strongly encouraged (as Iâ€™m sure every postpartum mother is) to lose ALL of the baby weight. Additionally, it was suggested that losing the additional 10 pounds I gained getting pregnant would provide me with the best starting position to ensure that I didnâ€™t develop gestational diabetes with any subsequent pregnancies. As such, I turned to Weight Watchers and grabbed my jogger to lose not only the 60 pregnancy pounds I had gained, but an additional 20 pounds.

Not having had an actual physical since I got married in 2001, I decided that I should get a full exam now that I had lost all of the pregnancy weight and was an active Mom. In March my husband and I both visited our PCP for an annual exam which included routine blood work. Although my cholesterol and iron counts were normal, the blood work came back with a high protein count which the doctor informed me in a follow-up call could mean hundreds of things. We waited six weeks thinking the results could be due to a viral infection and would clear up, and then I went back for another round of blood work. The second round also showed a high protein count, as did a third round six weeks later. As I wasnâ€™t exhibiting any symptoms and appeared to be perfectly healthy, my PCP referred me to a rheumatologist who would be able to determine what, if anything, was causing the high protein count.I saw the rheumatologist at the end of June and she did a FULL exam including a physical (walking, bending, general movement) and asked me tons of questions. I said I had noticed a few things on her giant list of questions in the months leading up to my visit â€“ fatigue, bruising, incessant thirst, dry eyes, and trouble sleeping through the night. I honestly thought these symptoms were just either Mom or nursing related types things that would eventually resolve themselves (I had just stopped nursing my son in May). The rheumatologist said it was tough to tease out whether or not these symptoms were related to being a new Mom as they are also symptoms of an autoimmune disease. As such, she ordered a more comprehensive round of blood work and had me schedule a follow-up visit a few weeks later to discuss the results.

My husband and I met with her in mid-July and learned that I do have an autoimmune disease. My blood work showed certain antibodies (SSA and SSB to be exact) that indicated I do indeed have a glandular autoimmune disease called Sjogrenâ€™s Syndrome. As this is typically not diagnosed until a woman reaches menopause (less that 15% of women are diagnosed prior to the age of 35 and women are 9 times more likely than men to have this), Iâ€™m VERY fortunate to find out so early â€“ especially since the symptoms I have were not all that noticeable (not bothersome enough to mention to my PCP during my annual physical).

My rheumatologist explained that some people are, for whatever reason, predisposed to autoimmune diseases. This does not mean that they will actually DEVELOP the autoimmune disease. What causes someone to develop the autoimmune disease is an environmental trigger like a severe trauma. She elaborated by saying that an autoimmune disease develops when the body â€œseesâ€ the inside of its cells due to the cells exploding from an infection or rupturing from a trauma (such as being hurt in a car accident). When the body â€œseesâ€ the inside of its cells, it begins an autoimmune response protecting itself against what it considers to be a foreign substance. In Sjogrenâ€™s Syndrome, it sends white blood cells to the glands causing them to become inflamed and ultimately, restricting their functionality. My rheumatologist surmised that the autoimmune disease I was predisposed for having (Sjogren's) was triggered during the c-section delivery of my son. At this time, there isnâ€™t enough information to understand whether developing autoimmune diseases is genetic, but supposedly most people arenâ€™t predisposed to autoimmune diseases, and most of those who are predisposed never have the disease triggered.

Iâ€™m still learning a lot about Sjogrenâ€™s â€“ especially the things I need to watch out for. Mainly, I need to watch my stress level, as emotional or physical stress will put the disease into overdrive. Besides the fatigue and having dry eyes and mouth, Iâ€™m at an increased risk for cavities, as well as kidney, liver, heart, and glandular diseases (including lymphoma) so Iâ€™m trying to become educated on how this is going to impact me long term. Thereâ€™s no reversing the symptoms I have now, but there is a medication called Plaquenil I can take (for the rest of my life) to slow or even stop the progression of my current symptoms and the onset of others.