Sjogren's Mom : Education

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.

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.

What are my chances of having a baby with fetal heart block?

amop — Thu, 08 Nov 2007 15:44:00 GMT

In that section about Sjogren's pregnancies and in the article I referenced in my earlier post it also mentioned that woman with Sjogren's who get pregnant and have both the anti-Ro and anti-La antibodies (which I have, and have high levels of) have a 1 to 2% chance of having a baby with fetal heart block. So why is my chance estimated at between 15 and 20%? Is it because I have higher levels of both of these antibodies? This is definitely a descrepancy that I'm going to talk with my high risk OB and my rheumatologist about. Seems like I'm getting and reading conflicting information.

Baby Rash

amop — Thu, 08 Nov 2007 15:25:00 GMT

I crawled into bed the other night and pulled in with my my "Sjogren's bible"...the big book with SO much information it's overwhelming. However, taken in chunks, it's tolerable without making you feel like you need an antidepressant (which you really shouldn't take, it seems, if you have Sjogren's as it dehydrates you...which isn't good when you're not producing enough saliva in the first place).

Well, the section I chose to read (again) was on pregnancy. One thing that stood out on this read through (as I pick up on something new each time I read it) was the fact that the baby may develop, besides fetal or congenital heart block, is a rash that can last up to a year. What kind of rash? Where is this rash? For a book that is SO descriptive, I found this tidbit a tease. I've been searching around for more information online (as I don't have time to digest a million books, typing in a word and hitting search is perfect), but haven't really found anything more descriptive (check out this article for more information). The rash is again mentioned here, but with no greater detail. However, they do a pretty good job of describing how autoimmune patients (with lupus and Sjogren's) are at risk of having a baby with fetal heart block.

The reason for the rash question is my son, although luckily born without any heart problems, was born with a rash on his face, arms, and legs. At first our pediatrician told us it would go away - it was a typical dry skin rash. After a few months and limitless questions from family, friends, and mostly strangers concerned that there was something w-r-o-n-g with our bundle of joy, we pushed the pediatrician and saw a pediatric dermatologist. She was VERY nice, and gave us some suggestions on creams to try and explained that this rash was fairly typical for babies. He still looked like he had poison ivy in red streaks across his face, but I would gently tell people (again, mostly concerned strangers) that he was fine and it most definitely was not contagious.

Several more months went by, and as I was nursing, I tried some elimination diets to see if the rash was food related. I was using all natural/organic cleaning products, no bleach or harmful chemicals around him, so there wasn't much in the way of external sources of possible allergens. At our next regular visit with the pediatrician I requested that he see an allergist. Allergies run in our family (including nut), so we had him tested. Besides having a very mild reaction to pollen and dust, he was fine. No nut or egg reactions. The allergist suggested that we try giving him a teaspoon of children's Benedryl each day for a week or so to see if it cleared things up...and if it did, to do that each time he had an outbreak. He, like our pediatrician and the pediatric dermatoloist, didn't want our son on steriod creams and we really didn't want to go to those lengths until we had exhausted everything else. The children's Benedryl did the trick, but he still get the rash from time to time. On the arms and legs isn't really as noticeable as they're usually covered enough that it's not too obvious. You can't really hide a rash on a child's face though.

So, back to my question...what causes the rash seen in babies born to Sjogren's mothers? Could the rash my son had be this rash? Who knows. All of the experts we saw told us that it was just eczema. Was it?

Getting Educated

amop — Thu, 18 Oct 2007 17:52:00 GMT

The first thing one usually does when they're told they have a disease that they don't really understand is try and educate themselves. I was pleasantly surprised the day I was diagnosed - my husband took a little trip out to the bookstore with my son and brought home an entire book on Sjogren's Syndrome. My initial reaction was, "Great, I can't wait to immerse myself in the topic." However, now that I've read nearly the entire book, I'm feeling completely overwhelmed.

My rheumatologist was great in getting me started. Besides answering my questions and explaining to me what symptoms I'm already experiencing (and weren't just related to being the Mom to an active toddler), she also provided me with print outs from a few web sites explaining the basics about the disease. After reviewing the hand outs, I did visit the websites (see the side bar for links to some of the sites I think are valuable). I learned that there's several ways to diagnose the disease (because of course I doubted that I really had anything, afterall I was in great health and didn't really feel like there was something medically wrong with me).

Beside the blood work, my rheumatologist also performed the Schirmer's Test to confirm my dry eyes. For anyone who hasn't had the pleasure of having two pieces of paper stuck in their eyes and made to sit still with their eyes closed for 5 minutes, let me just say it was all I could do not to yank the papers out. After the 5 minutes passed (which felt like an eternity), my rheumatologist measured how far my tears had saturated the papers and revealed to my husband and I that a "normal" adult my age would have completely saturated the papers before the 5 minutes was up. I, on the other hand, only saturated about 25% of the paper. Dry eyes for sure.

Amazing how being told you have symptoms makes you dwell on every ache, pain, or abnormality that you would have chalked off as an idiosyncracy or not even paid a second's attention to prior to being diagnosed. Now I follow every bodily complaint with, "is this related to Sjogren's?" I don't want to be one of those people who imprison themselves in their disease, and I'm fortunate enough that this was caught early enough that they symptoms I never knew were symptoms hopefully don't become any more pronounced.

So, back to the education. While the book was great at providing me with answers to many of my questions, it went into the details so much that I felt like they should have just provided a summary of the issues I won't have to deal with. It felt like with every turn of the page they raised a new complication that I could potentially acquire as a result of having Sjogren's Syndrome. Okay, so it's nice to know that there's things I can do to help with the fatigue and the dryness, but what can I do about getting lymphoma? One of the main points my rheumatologist couldn't say enough was that I should avoid stress at all costs. So does worrying count? I think so. I was already a worrier, so now I need to try not to focus too much on things that would normally worry me...let alone, my newly diagnosed condition and everything that goes along with that.

At this point in time, I still don't feel like I have a firm grasp on Sjogren's, so my hope is that I can use this blog as motivation to learn as much about Sjogren's as possible, one bite at a time. Afterall, that's the way you eat an elephant (thanks Mom).