Sjogren's Mom : Thirst

Quarantine

amop — Sun, 02 Mar 2008 22:36:19 GMT

I am beginning to think that all of those years "missing" out on the common cold have caught up with me. It all began just after Thanksgiving when my husband came down with a cold...then my son...then me. We worked through it (with my hard working husband actually taking days off from work so he could just rest...which is unheard of, we're both workaholics), and finally were better by the first weekend in December. Give us a few days.

Round 2 strikes...then round three...then I start to lose count. I know we were all well for Christmas, but pretty much miserable from New Years until the second week in January. Then we hit a spell where we were well for a while...and then I got laryngitis at the end of January...and we have all been "trading" off the cold and sore throat since then...with me sitting here tonight still congested after 4 days.

I've had to cancel play dates (both those we were attending and at least one we hosted), a BUNCO night with a group of Moms I know, now two dinners that I had planned to drop off for families with new additions, not to mention my son's educational playgroup and his music class. Add on get togethers with family and friends (including post-poning my family birthday party because I was not well), a date night with my husband, and most housework. Just about the only things I haven't put on hold are my doctors appointments (as there's at least one each week) and being a Mom. Moms just don't get to be sick.

I tried laying on the couch for a little while this evening as I feel like crap, worked a good part of the day getting a room ready for my son to make the transition to a big bed (which my husband is upstairs battling right now), and just felt like 30 minutes of shut eye would greatly help. No such luck. If it wasn't my son popping up onto the couch to check out sleeping Mom, it was my husband wondering when we were going to feed my son...who has been a bit of a whiner today. I know they can't help it, but unless I go up to my room and shut the door, they think I'm fair game. Guess I should take the clue.

I did have a nice conversation with the nurse from my insurance company last night - just a check in call to see how I was doing. Everything remains positive...except the sickness. The nurse even said I should probably mention something to my physician so they know that I've had a cold on and off since Thanksgiving. I have to wonder if there is anything that they can actually DO about it...or if I'll just sound like a complainer. I know that they're not going to toss me some antibiotics (nor would I want them to), and they're probably going to tell me to drink plenty of fluids and get some rest. I'm trying desperately to do both...and it's challenging on both fronts.

Once again I had another vivid birth dream last night...and it was a boy again. This time I delivered at my parent's house...like 5 months early (which would be about now)...but the baby was still 9lbs 4oz. I took the Plaquenil last night, so I'm wondering if the dreams are tied to the medication, or just the pregnancy. I'm going to watch and see how it goes this week and if I have these types of dreams on the nights I don't take the medication. I'd settle for a good nights' sleep and waking up not congested. It's hard enough to breathe when you're pregnant, so add on the congestion and blocked nose and it's a fight. That's what is making it tough to drink. Feel like every time I swallow I'm short of breath. The fun never ends. I just keep thinking about all of the people in the world who have it worse than I do. Those with terminal illnesses, in hospitals, and even those who aren't able to conceive. I'm not sitting here whining (or hopefully it doesn't come across that way), just trying to document how I'm feeling and what I'm going through...as it's part of my life.

Cramping

amop — Thu, 21 Feb 2008 11:49:21 GMT

Yeah, the cramps are back. Supposedly from all that my doctors have said, this is fairly normal...unless it feels like labor cramps. For someone who never got to experience labor or labor cramps, that's a tough one to figure out. I know about the back pain, the "tightness" over my abdomen, etc., so I'm just thinking this is normal cramping. Whatever that means.

I joined some friends for dinner on Monday night at a Japanese place (and no I didn't have sashimi!) just about 10 minutes from home. As always, we spent the first hour or so just talking before we even placed our dinner order. Nice to just sit and have a civilized conversation with another adult without wiping faces, fixing food, or picking up food off the floor.

I made it through our meal, but all of a sudden started to sweat and have some cramping. I thought it would pass, but it just became more persistent. I excused myself from dinner, left my portion of the bill, and headed home (I was happy to hear that my friends did stay and talk for a while longer). I was drenched by the time I got home, and after visiting the bathroom, headed to the couch in my comfy pjs to lay down. The cramps continued all night long, but they were high up under my chest, not down where the baby is. I woke the next morning not crampy, but sore (like I had done about 8,000 sit ups). Maybe stuff is moving around in there. However, by the afternoon, the cramps were back with a vengeance...as they were after my nap yesterday afternoon. Maybe it's an end of the day thing.

I've been drinking quite a bit, but I'm also fighting yet another cold. I've been congested the past few days, and my son has been a little runny and coughing. Think we're clearing through the worst of it, but last night nearly took everything out of me. My son (who I think is working on his 2 year molars) fought us to go to sleep last night. Instead of the typical 8:15-8:30 bedtime, he probably didn't fall asleep until well after 9, only to be up crying around 10:30. When I went up to comfort him, I realized it might be the teething as his hands were jammed into his mouth and the drool was very evident, so we brought him downstairs to calm him down for a few minutes and get some Motrin in his system. I was ready for bed by that time, so at 11pm we all headed upstairs and tried to tuck the little guy into his crib. No luck. He joined us in bed for about 30 minutes until he had calmed down and seemed sleepy. My husband moved him into his crib, where he immediately began to cry, then scream, then wail. Spent the next few hours shuttling back and forth between my bed and rocking/singing/calming my son to sleep in his room. Each time I'd lay him back in his crib nearly asleep, he'd wake and start the screaming process all over. He finally cried himself to sleep just before 2 and then coughed for the next 20 minutes. I was shocked when he was up before 7 this morning...so here's to hoping for an early and long nap this afternoon! Functioning on under 5 hours isn't something I'm up for just yet.

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).

Can Plaquenil Make Me MORE Tired?

amop — Tue, 12 Feb 2008 01:35:57 GMT

A few people have asked me if I've noticed a difference after being on 200mg/day of Plaquenil after 2 weeks. Well, if feeling MORE tired is a difference, yeah.

Not sure if it's at all possible for fatigue to be a side effect of the medication, as it was my understanding that it's supposed to help improve my fatigue. I could just be lucky enough that the fatigue during the second trimester just happened to coincide with me starting the medication.

Well, tonight I'm supposed to up my dose to 400mg/day. We'll see if that makes any further difference. I did call my health insurance company to discuss whether an eye exam every 6 months would be covered. I explained what was going on - that a potential side effect of this medication is blindness (irreversible, so doesn't that sound like something to be monitored closely??). They indicated that if my eye doctor marked that it was medically necessary vs. routine it would be fully covered. Here's to hoping that 1) there is no change in my vision and 2) that it really is covered. Going to have that exam in early July.

I did got and have my teeth cleaned this afternoon. Knowing that dental hygiene is very important for those with Sjogren's due to the dry mouth issues (causing more cavities), I want to make sure I'm not only brushing and flossing at home, but getting in for regular visits with the dentist. The hygienist commented during my visit that my mouth was very dry...and bleeding. She said that the excess bleeding could be due to the pregnancy hormones, the Sjogren's, or the fact that I'm a mouth breather (guess it changes the texture and sensitivity of the skin on your upper palate). Great. Nothing like having good teeth with few problems, but wind up with bleeding gums throughout your cleaning. At least there were no cavities.

Time to probably start looking into more of the medication side effects so they are top of mind, not to mention read more about other symptoms of Sjogren's to monitor whether I'm progressing or not. My next visit with the rheumatologist is on the 25th, so we'll be able to chat about things at that point as well. Want to be armed with any questions ahead of time though. Be prepared. Is that the motto of Motherhood? I know it's the boy scout motto.

Split Lip

amop — Thu, 31 Jan 2008 11:18:48 GMT

I'm still battling this bout of laryngitis...while my son and husband are duking it out for loudest cough and snottiest nose. Can you believe I've counted that we've used 18 boxes of kleenex (the big ones too) since the week before Christmas. There's two adults in this house, and we're not using them for anything other than nose blowing. At least I don't have their congestion...and hopefully won't. I do have a dry cough, mostly because the laryngitis has made me incredibly dry, so every now and then I get a little tickle and with it being so dry all I can do is cough.

I'm also dry enough that when I woke up yesterday morning and finally looked in the mirror, I was shocked to see red teeth staring back at me. Seems that my upper lip cracked on the inside of my mouth (that's how dry I am) and bled all over my teeth at night. I literally had to brush my teeth to get it all off. I can still feel the cracks, but luckily it hasn't bled in the past 24 hours.

Had another one of those encounters with my clothes last night that left me feeling like Spiderman...I was sticking to everything, including my son's bath towel. I'm lucky that although my husband feels like complete and utter crap he still washed our son. The less time my hands are in the water the better. The creams are working, but with my hands in and out of the dishpan, washing from going to the bathroom (as I'm drinking enough to support a small town), washing from changing diapers, and other general household duties, the cream usually isn't on for a prolonged period of time. I hate wearing gloves, so I'm against doing dishes with those things on. Think it might be time to find a less abrasive cleanser for the dishes.

I know that this too will pass and we'll all be better, but I was really hoping my husband would take the day off from work tomorrow to do something fun (like go antiquing) for my birthday...however, as he's been working from home these last four days, I have a feeling all bets are off for him to take tomorrow off for a day of fun. Not to mention, the three of us would probably prefer to stay in bed.

My son has been up early this week (prior to 7, if not around 5 to crawl into bed with us for a little while), so I've been unable to sleep much past 5. Nothing like a toddler's feet pushing against you or their head whacking you in the nose or under the chin as they battle to find a comfortable position in your giant bed. They don't fall asleep and stay in one place, at least my son doesn't. All I'd like is the ability to sleep in one day...without feet in the stomach, crying, or someone saying, "down, down, down," from his crib. I've been very kind about letting my husband sleep in this entire week (okay, 9am is late in this house), so hopefully he'll return the favor this weekend.

Here's to hoping that we all wake up tomorrow feeling like new. I was hoping that would happen today as we all finally climbed through the bath last night after about 3 days in our pjs. No such luck. At least we're now clean.

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.

Aches and Pains

amop — Wed, 02 Jan 2008 23:32:00 GMT

Although I'm technically feeling better (i.e. less sickly), tonight I noticed that not only is the cold I was getting prior to my stint in the bathroom New Years Eve back with a vengeance, I'm completely sore from all of that wretching. I'm so sore that I can feel it in my shoulders and upper back when I breathe in. Yes, that sore. Hurts to breathe, blow my nose, cough, walk. You get the picture. That is on top of the soreness I'm feeling in the ribs...which I kind of expected.

I peed twice today. Once this morning, and then again about 30 minutes ago. That's not nearly enough and I know it, but it's about all I can do to drink right now. I am the type of person that can chug just about anything. I can do a bottle of water in one breath no problem. My Mom called me a camel when I was little because I could put it away. I remember going to the hospital once to be checked for appendicitis, and in order to do the ultrasound they needed me to have a full bladder...thus they asked me to drink a 2 liter bottle of liquid. Which I did in about 5 minutes, then spent the next hour impatiently waiting for the ultrasound technician.

I also am having a tough time choking down any food. I think I'm hungry because my stomache is growling like an angry dog, but my appetite tells me to run from food. Nothing's really appealing. Only thing I keep thinking about it a nice warm burger with mushrooms and cheese. Then I really think about and all I can see is taking one bite and pushing the rest away. I just forced an orange into my system, so at least there's something nutritious. Definitely not getting my 4 servings of dairy the last few days. Did get at least 1 or 2 today...tomato soup and grilled cheese I forced in tonight for dinner. Can you believe even ice cream isn't appealing? Who would have thought?

Hoping tomorrow I feel up to getting out for a little while just to hit the grocery store. There's no more juice, we're low on milk, and besides eggs, there's not much else in the house that's going to be dinner tomorrow (I have stuff in the freezer, but it would take longer to defrost a whole chicken...and chicken's not appealing right now). However, if I still feel this crummy tomorrow, I may get to the store, pick up the milk, juice, cheese, and yogurt I actually need, then book out of Dodge. Nothing like shopping when you're not hungry. At least I won't bring home any crap. Maybe some pretzels for my son so he stops trying to eat the PlayDoh for it's salt content.

Happy...er...New Years

amop — Wed, 02 Jan 2008 12:07:00 GMT

New Years was off to a great start in our house this year. I had developed signs of a sore throat New Year's Eve, and with the morning sickness I've been having, felt rather lousy most of the day. We grazed on leftovers (pizza and some other things) most of the day, and as my husband was starting to battle yet another cold, decided around 11 to head upstairs to watch the ball drop in our new soft flannel sheets. Oh the things you look forward to!

By about 11:30, I was really thinking that I was going to be sick, so I asked my husband to crawl out of bed and run down to the basement pantry and get me a can of ginger ale. I took a sip, and within a minute was ripping the covers back on my run to the guest bathroom. We have a master bathroom, but haven't really used it in several years. The stall shower is cracked, and the faucet gave out two years ago. Ever since, we've been planning on rennovating it, but just haven't had the time. We actually have the money set aside, which I'm sure is something our financial planner is going to ask us why it's still in the account when we have our yearly meeting in a few weeks. Anyways, the master bathroom is currently used as storage for laundry and drying racks...so we use the guest bathroom.

Quickly moving to the bathroom the thought passed through my head that I was going to be sick, but didn't really sink it. It wasn't until I actually started to throw up that I realized it was happening...and my aim was off, and my long hair was down. What a mess. My husband heard me, and came in just in enough time to pull back my hair for rounds 2 and 3. Crying hysterically...because that's what happens when you're jolted by what just happened...I managed to blow my nose, wash my hands (and hair) and then brush my teeth. I then asked my husband for the windex and paper towels so I could begin to clean up the mess I just made and instead he walked me to bed and went back to clean it up himself. What a saint.

He came back into the bedroom and said for having morning sickness, I was about 15 minutes early. Was just about midnight by the time he was back in bed. How romantic. He also let me know either I need to improve my accuracy or get my head in the bowl...seems about 25% of what I discharged hit the toilet. The rest covered the wall, floor, outside of the toilet, and even my son's potty. Wonderful.

12:25...ran back into the bathroom. 12:55...and again. By the fourth trip everything was out of my stomache, so I was dry heaving...crying, and puking up bile. Yuck. I also began to progressively sweat through all of clothes each time, returning to bed with clean teeth, hands, and yes, dry hair because I was quick enough to pull it back. However, I was sweating so hard that it was rolling down my face. By 3:30am I decided that these half hour trips to the bathroom were concerning, so I woke up my husband (who diligently slept through the entire night after cleaning the bathroom) who was completely suprised I hadn't stopped running to the bathroom and was a bit shocked to see me shaking and soaked. He found the number for my OB and called the answering service to leave a message. He hung up the phone and said he was going to the bathroom himself, and by the time he was out the bedroom door, the OB was on the phone.

Although she wasn't an OB from my practice (they rotate every other weekend with another practice for coverage) she was really good. She asked me for my history, so I told her I was about 9 weeks, that I was a high risk pregnancy because of Sjogren's, that I have a 7cm cyst on my left ovary, and then what had transpired since just before midnight. She asked if I had any bleeding or cramping, and I replied that the only thing I had noticed was cramping high up in my chest - most likely from the trauma. She said that it sounded like food poisoning or a virus that has been going around. She also acknowledged that being short on fluids wasn't the best thing, and that having some anti-nausea meds might make things better. However, given the time of night and that it was New Year's, running to the pharmacy wasn't the best thing...and if we were really going to go out, we should probably come to the ER so I could get an IV with fluids as well. She then explained that since I wasn't far enough along in my pregnancy, I wouldn't be seen on the OB floor (why, I have no idea)...and that this time of night on a holiday was the worst time to be in the ER. I indicated that I was pretty miserable, and being in the car for 45 minutes, having to drop my son off at my in-laws, and then puking my way through the ER didn't sound like much fun. I also asked how important it was that I be seen. She said that if things improved, I was probably better off staying as comfortable as I could be at home. However, if I did start bleeding or having cramps in my lower abdomen, that I should call back and just come in. By calling ahead she could at least let the ER know I was coming in and they could hopefully get my IV in (with the meds and fluids) while I waited to be checked out.

After thanking her for calling back so quickly, I hung up and lunged yet again for the bathroom. By about 630 I had stopped dry heaving, but at 5 the vomitting switched to a lower GI issue. That wrapped up around 730, and I finally fell asleep...only to hear my son at 815. Luckily my husband was functional and took him downstairs to let me rest. It wasn't until about 10 that I could bring myself to drink anything, and after about 2 oz of water, I added in some flat ginger ale. Then some apple juice. I think I got up around noon to pee, and then spent the rest of the day trying to sleep off the cramping and soreness. I've been pretty shaky since, and find it difficult to wrangle my son, but my husband also took off today (well, he's working from home), so he's here if I need someone to change a diaper. That's the hardest thing, getting up the stairs and onto the changing table.

Last night I was able to come down and lie on the couch around 530...just long enough for my husband to wash the sheets and comforter, then I went back up for a shower (yeah!). I had 3 slices of canned peach and a piece of toast for dinner. I was able to choke down some oatmeal this morning, but I still feel pretty nauseous. I also have lost a fair amount of weight. Ordinarily that would have been a good thing, but knowing that I'm now lighter than I was before I got pregnant makes me a little concerned. I'm sure it will all balance out, but three days without much nutrition isn't the best thing for baby. I know that they're strong and resilient, but I don't need to push things. I probably lost the vitamins I took New Year's Eve, and last night couldn't bring myself to put two big pills in my practically empty stomache. Two nights without vitamins won't hurt us, but it doesn't help given I also haven't really had any food.

I have been incredibly thirsty - and my mouth has never been drier. I would have liked to just down the entire 2.5 gallon container of water on my counter last night, but just sipping a glass of water was tough enough. Nothing like being thirsty and feeling like you can't chug down enough to get caught up. My tongue was so dry last night it felt like leather - no saliva at all. Sounds funny, but try talking to someone like that. Feels like your mouth is full of wall paper paste. I'm still lagging on the liquids...as I can tell when I'm dehydrated because my teeth start to ache. Not to mention I feel like 115 years old with the wrinkly pursed lips.

Hopefully I'll continue to feel better today and be ready to manage a toddler on my own tomorrow. I probably need to get to the grocery store, but don't think I could deal with the smells right now. That and having little energy would probably exhaust me. So much for spending New Year's Day working on projects around the house...like finally cleaning out the master bath and deciding on the layout for the shower. I already have a tile guy and the tile picked out, we just need to make some final decisions. Did I mention the sink and toilet are in the basement? Not much more needs to be done, just needed a day like yesterday where we had nothing else going on to finally start the project. Arg.

Welcome to the Club

amop — Mon, 10 Dec 2007 01:28:00 GMT

Our medical insurance company must have some pretty keen eyes, as I received a mailing the other week for a mom-to-be program that they're offering. Having worked in health care, I understand that these programs help to manage costs and ensure that patients receive the treatment they need. The insurance company must have noticed I had some labs run a month or so ago and it triggered this outreach. Nice that they're paying attention.

So I decided to call and talk with them and find out what the program was all about. I spoke with a nice lady who asked me a bunch of expected questions - how do I know I'm pregnant, have I seen my doctor, what was my pre-pregnancy weight/height, and what is my weight now. She shared information that helped to refresh my memory (like no deli meats, no unpasturized cheese, watch the amount and kinds of fish, etc.), as well as encouraged me to have 3-4 servings of dairy each day, as well as fruits, veggies, and protein. Then she explained that I should be taking in about 2200 calories a day. Okay, 4 servings of dairy is about 600 to 800 calories alone...and that's without eating ice cream. Four yogurts would be 600 calories. Take that off the 2200, then take off the 3 servings of fruits, 4 servings of veggies, and the protein...and don't forget limit the sweet intake. Yikers. Kind of deep for an early pregnancy talk.

We also talked about limiting the amout of stress in my life (was I working outside of the home, how would I describe my stress level in the home, etc.), as well as the heavy lifting I was doing. Reasonable. Then she asked if I had any other "little ones" at home, and I explained that I had a 19 month old, to which she made some type of comment about how they were close in age. A comment I thought could have been left out of the conversation as it's none of her business how close our kids are in age...and just because they're not the traditional 3 years apart doesn't mean that the second one wasn't planned (and I mean highly planned). She asked if he was active, and how much he weighed. Her response to his solid 32 lbs was that perhaps the "limiting heavy lifting" wasn't going to be that easy...but I should try and force him to be as independent as possible, and lift him only when necessary.

The kicker to the conversation was that she and I discussed how I had Sjogren's (and she asked me what it was and how to spell it...wish they were a little more trained), and in the part of the conversation where she explained what the next steps were, she fumbled over how to tell me that because of my "disease" I would be monitored more frequently...most likely...as she didn't really know what it was that I actually had. She was polite, and tried to be tactful, but I think it fell apart somewhere along the way.

The nice part about this program is that I received a book (your pregnancy week by week...which is nice, because I read the other book...what to expect when you're expecting for my first pregnancy) in the mail to help me recall what I'd be going through each step of the way. I also received a letter explaining the program and the mention that there was a survey I needed to complete and have my doctor complete. The postage paid envelope was there, but not the survey. Nice, as my doctor's appointment is this Wednesday!

Other than being tired just from trying to do all of the normal household Christmas preparations, the only other thing I've noticed is some "fluttering." I know it's WAY too early to feel movement, but this is more like a concentrated pulse in my lower left abdomen. It happened once prior to taking the test and I thought that it was just a very strange sensation. Then it happened again this afternoon while I was driving. Feels like there's a pulse of blood through a vein down there or something. Neat, but something to monitor. I also had some mild cramping on and off over the past week...think it's probably because I'm not drinking enough (or wasn't as I'm constantly thirsty now). Something to watch. Something to happily watch.

Is My Memory Failing Me? I Can't Remember.

amop — Mon, 12 Nov 2007 20:14:00 GMT

When I was 9 months pregnant and patiently waiting (I was a happy pregnant mom-to-be) for the arrival of my son I started to notice a now too common trend...my memory wasn't what it used to be. You know the saying an elephant never forgets? I'm the elephant. I don't forget. I might put it aside, but in the middle of my shower or while standing in line at the grocery it will come back...and that's when I'd jot it on the mental pad in my mind and whatever it was would get addressed. I can remember obscure things - birthdays for people I haven't seen in years, recipes I haven't made in months, how much something costs at Wal-mart (I'd be good on The Price is Right). On top of it, I could remember the important stuff - lists of things to do or buy, and within a narrow margin of error, I'd remember pretty much everything. Then I got pregnant.

Things started to slip little by little. I'd put something in the car to run an errand, and would drive right past the place I was headed to, completely forgetting I needed to stop there. I'd space on things my husband told me (which I've always claimed he does to me), things I needed. etc. Nothing major, but annoying nonetheless. When I finally went on maternity leave 2 weeks before my due date (and just in time as my OB said my swelling was severe enough to put me on bedrest), I was thankful not to be working a number of reasons, including I didn't want to space at work. You know, forget to get someone something important, lose my train of thought in a meeting, or something equally as embarrassing.

What did I do on maternity leave? Not much. A good thing as Mommy brain was starting to kick in. Each day I would tackle something simple - make a double batch of something for dinner so I could freeze the balance. One afternoon I cleaned (well, organized) my cleaning cabinet. The day I decided to make cookies (I LOVE to cook and bake) happened to be a day where everyone was calling to ask that wonderful question - any progress? So inbetween calls from people I worked with, family, and friends, I made two different types of cookies. The first ones (oatmeal raisin) came out great, and I was happy to tuck those into the freezer for later consumption. The second batch was your classic chocolate chip...except I made them with peanut butter chips too.

I mixed up the batch following the directions on the back of the package while on the phone, and at the end of my call, the cookies were placed in the oven, and I back on the couch with my swollen feet elevated. The timer goes off and what do I see? The cookies liquified and ran all over the oven. They were so thin (and I do like thin cookies in some cases) that they practically became crispy crackers with little flavor. I not only had to throw out the entire tray of parchment thin cooked dough, but scrape it out of my oven (and then clean it - got to love self cleaning ovens!). For the life of me I couldn't figure it out, what happened? I'd made that recipe several dozen times in the past, and since I've been cooking since I knew what a wooden spoon was this type of disaster wasn't my norm. I called my husband at work to tell him I must have completely lost my mind when in the middle of my conversation with him it occurred to me...I only put in one cup of flour. Who spaces in the middle of scooping out 2 cups of flour and forgets the second one? Not a complicated recipe where you have to divide it out or set it aside, just scoop and mix.

After my son was born I continued to have Mommy brain and would space on different things - a new one being words. Yes, I would be in the middle of a sentence and suddenly forget the word I was looking for. This I attributed to being sleep deprived and the only real conversations I was having concerned feedings, pee, poop, and making sure I've had enough water to keep hydrated. Should have known when I was drinking 2 1/2 gallons (yes, I'd go through Poland Spring's handled jug) a DAY that I might have been having some dry mouth issues and it wasn't just because I was nursing a BIG baby. Anyways, where was I?

A few months ago I noticed that I now space in the middle of sentences. I'll be talking with my Mom on the phone or my husband and mid thought, forget where I was going. Yes, this does happen from time to time, but how about multiple times in a conversation. Again, I thought Mommy brain combined with being distracted by a toddler running around at my feet. However, lately I've begun to feel I've got some short term memory issues. I'd be in the middle of writing a sentence in a thank you note and forget what I was saying. Ever write a word twice...in a row?

I've been working on Christmas lists for our family in preparation for the holiday posting at Thanksgiving and I've found myself online typing in a search term and I forget what toy or product I meant to type. My husband asked me for his watch the other morning as I was upstairs and he had already gone downstairs with our son. Do you think in 2 minutes I could forget a watch...even after the last thing I did before leaving the room was put mine on? Yup. Didn't remember until we were sitting in the car...a half hour later...when my husband asked me if I brought it down. Two years ago this wouldn't have been an issue. I'm a good multitasker. I COULD talk on the phone, fold laundry, watch the soup simmering on the stovetop, and dust all at the same time. Now I would drop off from time to time on the call, the laundry might get folded but only if the soup boiled over and I'd find the dustcloth a week later when I went back in the room where I left it to dust again. What has happened? Is this part of having Sjogren's...being a Mom...getting older...or all of the above?

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.