October 2007 - Posts
I broke down yesterday afternoon and decided to take a pregnancy test. I could have taken it a few days ago (prior to when I should have gotten my period), but I figured I'd wait until I was pretty sure I was late. Well, it was negative. Since I didn't have my period, I of course told myself that I could still be pregnant - afterall, it took 3 tests and about 3 weeks after my period to finally get a positive test with my son.
This morning I woke up with some minor spotting. Saw that last month for about 48 hours, then got my period. Wasn't sure what to make of it, but I told myself I was probably not pregnant. No need to get my hopes up. However, I didn't dismiss it entirely either. Tonight confirmed it - no pregancy this month. Would have been kind of nice to be pregnant as my due date would have been July 7th - same day as my Mom and Aunt's birthday. Sorry! Now I suppose we're looking at an August birthday (5th) for our next child...but most likely an end of July date as they'd take me early given the size of my son at birth.
It's been 4 months, about the same amount of time it took to get pregnant with my son. I know it's not been an eternity, but each day I notice a new symptom or feel like I got laid out by a Mack truck after keeping up with my son for an hour makes me slightly frustrated. I'm thankful I am not tackling many of the conception issues other couples have, but I still have to wonder why so many couples are able to get pregnant "without even trying," (or "wanting to"). Why do some of us have to literally make something that should be fun and enjoyable into a science experiment? I'm looking forward to purchasing our next ovulation kit - have to hope our health fund will accept this as a medical expense two months in a row.
I really didn't think I'd ever need to make a trip to a medical supply store unless I was either shopping for an older relative or I was in some type of severe accident. Who would have thought I would be there to get custom fit for a wrist brace for carpal tunnel. I realize that my swollen knuckles in my hands could be a result of developing rhuematoid arthritis or could just be swollen as part of the carpal tunnel. Not sure which one to hope for.
I picked up the brace and will give it a try tonight and see how it feels - both wearing it and how it makes my wrist and hand feel in the morning. Luckily BCBS covered a good portion of the cost. Nice to know not everything is considered "not medically necessary." However, I would have preferred them to pay more towards some of the other bills than 80% of the $40 cost for the brace. Can't complain too much though, they covered most of it.
During my 3 month follow-up visit with my rheumatologist we not only talked about my pending pregnancy, but also about the additional symptom I've noticed and my fatigue. In the past few months I've noticed that it has gotten uncomfortable to hold a pen or pencil for a reasonable amount of time. My hand cramps up and my writing (although not stellar to start) has gone downhill. I often have to break after two sentences, readjust, make a fist or two, shake it out, and then resume writing. For a while I thought it was because I was rushing to write something that it was difficult to read, but lately the cramping has gotten noticeable enough for me to mention it.
Pre-diagnosis, I wouldn't have thought too much about it, and probably wouldn't have said anything to my husband let alone a doctor. Now it was one of the things I raised with my rheumatologist...and it seems that I have a bit of carpal tunnel (which is not abnormal among Sjogren's patients), so she wrote me a prescription for a wrist brace I'm supposed to wear at night. I have to make a trip at some point soon to the medical supply store and try them on - they're custom fit to a certain extent. She wrote the prescription as some plans actually cover them...I have a feeling we won't be that fortunate. Although we opted to "buy-up" with our medical coverage this year and get the POS plan as we were expecting me to be pregnant within the next year, it still has higher co-pays and deductibles than I've had in the past. I wouldn't be surprised if this was not considered "medically necessary," and therefore wasn't covered.
The good thing about getting the extra coverage this time around is that we did so before my diagnosis...so these quarterly rounds of nearly $1400 worth of bloodwork (yes, bloodwork) will hopefully be covered. The one I just had earlier this month will be the first one to go through on our new medical plan, so stay tuned. The last one that we processed with Aetna, we were still obligated to pay about $350 of the bill. That's a chunk of money for a single paycheck household. And that's just the bloodwork. That doesn't include the medication (which I did order through our mail order pharmacy so we could get the "buy 2 months, get a month free" discount), the brace I need to pick up, nor the doctor's visits.
My fatigue hasn't gotten better. It's funny, but when you tell people you're tired, their first reaction is, "take a nap." While sound advice, it doesn't work that easily for me. I have a VERY active toddler. He's up when my husband leaves around 7-730, and so am I. He's just dropped his morning nap, but he does take one lengthy nap each day. For the first few months post diagnosis, I would use this nap time to get some things done around the house. Yard work, mow the lawn (as we tend to be away most weekends in the summer, so it's tough for my husband to tackle that after working a full day), clean the house, chat with family members (as doing so wth my son in the room is nearly impossible), and towards the end of the week pack for our weekends away. Later in the summer when it cooled off in the afternoons, I'd use this time to get a run in with my son along for the ride in his jogger. I would usualy run in the morning as it was cooler in the summer, but sometimes schedule wise it was easier to use his naptime in the afternoon for my runs.
I finally decided a few weeks ago to try and lay down each afternoon when my son went down - I had gotten to the point where I could have probably fallen asleep watching my son play I was so tired. I would have to ignore the calls, as everyone seems to call around 3ish, but for nearly a week I was able to get at least 45 minutes snooze time in the afternoon. It was great. Until I tried to fall asleep at night. I'd lay in bed for an hour or so trying to fall asleep, finally turning the tv back on hoping to find something mindless to put me to sleep. I talked with my rheumatologist about this and she said napping is probably not ideal - it would be best if I tried to get a longer sleep at night (go to bed earlier, and if I don't nap in the afternoon I should be able to fall asleep more quickly). Additionally she encouraged me to not exercise close to bedtime. With the weather wet and rainy and with our new fall activity schedule I had started to run at night down in the basement on our treadmill. Guess that's out. Now I'm going to have to use his naptime to exercise. I'm also supposed to avoid caffeine, avoid food to late in the evening, and make sure I get at least 10-15 minutes of exercise each day. And I'm not supposed to be stressed. I'm stressed just thinking about trying to pack my days so I get things accomplished (like music class, shopping, doctor's appointments, making meals, laundry, and finding time to take care of myself). However, if I don't take of myself, I can't properly take care of anyone else.
From my previous posts you know by now that after being diagnosed in July with Sjogren's Syndrome (and seeing my OBGYN a few days afterwards for a pre-pregnancy check up), my husband and I decided to start trying immediately for our second child. We had discussed earlier waiting until our son was around 2 to begin this new adventure, but the need for me to get onto maintenance medication and knowing it took a few months for me to get pregnant the first time we jumped right into project #2.
As I had just started my menstral cycle in February and it wasn't yet totally predictable, it wasn't too surprising when I wasn't pregnant the first month. My rheumatologist told me that the last thing I needed to do is get stressed either with the pregnancy or just trying to get pregnant, so we took the next dozen weeks with smiles. During the middle of the second month I had some "signs" of early pregnancy such as a massive headache (which I read could be due to the changing hormones) as well as some spotting (which I've never had mid-cycle). At the end of the second month there was some wonder, so I immediately opened up the remaining test from when we were trying to conceive our son. Yes, it was a little past the expiration date (just a few months though), but I figured if I got a negative result, I'd wait a week and try again...and if it was positive, my husband would have a happy shopping trip on his way home from work. It was negative, and after just a few days, there was no need for a new purchase.
Bring on month three. My husband and I didn't dwell too much on me not being pregnant yet, and again made a very concerted effort during the middle of my cycle to ensure that there might be a positive pregnancy test. As our first child was a son (planned), we are trying to have a girl the second time around. Yes, it is possible to plan for the gender of your child, and no, I don't mean that we've had any medical intervention. As such, it's important to know when you ovulate, so one of the things my husband and I started to wonder about in month 3 was whether it would be worth investing in a basal thermometer so I could plot and chart out my temperature over the month. Did you know that you're looking for a variation of just 0.5 degrees? Also, you're supposed to take your temperature at the same time each morning before getting out of bed. With a teething toddler who wakes early morning because he's in pain or has soaked through his diaper, pjs, and sometimes bedding, it's unlikely that 1) I'd remember to do this each day and 2) be able to stay in bed each day until a specified time. As I wasn't thrilled with potentially setting the alarm for 4 am to ensure I took my temp at the same time every day for a month, and because we were trying to make this a stress-free adventure, my husband and I decided to just keep trying unassisted for a little while longer. It wasn't like I was in a big hurry to get pregnant, and it wasn't the worst thing if the kids were another month or two apart.
I was one of those women who took 3 pregnancy tests with my son. Not because I was so excited and had that much money in my pocket to burn, but because at the end of my cycle, the test was negative. A week later, the test was negative. I went and saw the RN where I work and she said I was most likely not pregnant, she had never heard of a false negative that far out. So, another 5 days went by (nearly 2 weeks after I should have gotten my period), and it was finally positive.
Month three came and went pretty uneventfully. However, instead of getting my period at the end of the cycle, I had some very light spotting for about 48 hours. Knowing it took so long to test positive the first time, instead of spending the money on another test at this point, I called the RN at my OBGYN's office and told her what was going on. She had me get some bloodwork, and not surprisingly, that night I knew I wasn't pregnant. She called the next morning to confirm what I already knew, but also to let me know that my progesterone levels were low which meant I probably didn't ovulate. Huh? Didn't ovulate? What causes that? She explained a number of things including stress, illness, and sometimes it just happens. Nothing I can impact. She encouraged me to get that basal thermometer, and if after another few months I still wasn't pregnant to schedule an appointment to discuss next steps. Still not convinced I can commit to doing that process correct, I chatted with my husband who found that the local pharmacy carried an ovulation kit. You basically pee on a little test strip each morning and it tells you whether or not there was a surge in your luteninizing hormone. When there is a surge, you're within a 10 to 30 hour window of ovulating. Better information that I had without so much work. You just had to pee on it first thing in the morning each morning. As I always have 30 seconds to do this in the morning and because I kept it beside the toilet, this was much easier for me to do than monitor and plot out my temperature.
For nealy an entire month I diligently tested my urine each morning with no signs of the LH surge. The mid point of my cycle passed with still no signs. After another 5 days the LH surge finally showed up. This could explain why I haven't gotten pregnant, I don't ovulate mid cycle. This information was extremely helpful and reassuring as I was afraid I'd have to call my OBGYN's office back to let them know I didn't ovulate again. So now I'm back to the waiting game - again I had a HUGE headache for about 3 days earlier this week, I was nauseous for about 48 hours, and my upper abdomen is a little bloated and tender. I wouldn't say I'm getting my hopes up, but I am trying to think positively.
One of my friends was quick to point out it's a good thing that I made the decision not to return to the position I held prior to taking my maternity leave. Working 70 to 80 hour weeks and having the stress of an executive level position at a fortune 100 company would have probably made me a wreck. I've VERY thankful my husband has a position that affords me the opportunity to stay home with my son full time. Not that my days aren't stressful, but the stress is manageable and I need to learn to find better coping mechanisms...or my ideal scenario...learn to say n-o more often. At my 3 month follow-up visit with my rheumatologist she asked if I was working, and when I said no, her response wasn't just to take note, but to say, "that's great." I have to wonder if she would have told me to quit (or stressed the importance of finding a lower stress occupation) if I was still working.
I really feel for adults who have Sjogren's and have to work...and especially those who are working parents. I know there are some people out there who admit that they couldn't stay home, that they either needed the challenge or the time at work to be a better parent. I, on the other hand, am the type of person who has to succeed at everything. If I were working, I'd have to give 110% there, as well as 110% at home...which just isn't possible. I'm the Mom who made all of her own baby food. My son's never had a jar of anything other than my homemade applesauce. I also have made both of his halloween costumes, knit his Christmas stocking, and hand made cards for every holiday up until this point so family and friends had a personalized card with a recent picture of my precious boy. Everyone I know calls me "Martha," and I take it as a compliment. But I couldn't be the Mom I want to be if I also had to work. There just aren't enough hours in the day. And now that we're trying for a second child, I need to have only one priority in my life - my son. I don't want to be sitting at work wishing (or regretting) I wasn't with my son. And I don't want to be with my son and feel like I'm letting things slide at work. To me, it's just not worth it, and frankly it would just add more stress to my plate.
However, it is still important to me that I'm active. In the first 18 months of life my son and I have attended a sign language class, joined a few playgroups, taken a swim class, a music class, gone to countless story hours at the local library, and started an "educational" playgroup through our school system. Since we're fortunate enough to have family in the area, my son sees his grandparents at least weekly, and we the remainder of our family several times a month. I also entertain quite a bit. We host a playgroup at our home as well as have our immediate families over for a meal at least monthly. We just hosted two bbqs (one for the families in our playgroup, and another for our friends) in September, and I'm gearing up for a Halloween themed playgroup with my son's friends at our home in late October.
I'm not a "call a caterer" type of person - I am the caterer. I've hosted several wedding and bridal showers over the years, not to mention major holidays for upwards of 2 dozen relatives. I'm not the type of person who just has burgers and dogs for a bbq, or picks up pastries for a playdate. Nope, I've got to make stuff (because I love to cook and I love my kitchen). I'm learning how not to be a "host-zilla" (thanks to a friend for coining the term), but my husband still pushes back suggesting that for once I don't try and do everything (including making all of the food myself). He's a sweetheart and the devil's advocate in many circumstances. Sometimes it's annoying, but for the most part, he usually gets me to see that the added stress isn't worth the end result. I know most women would say this, but I do have the best husband in the world.
So, no, I'm not working full time right now (I work as a kitchen assitant at a cooking school one or two nights a month...it's not work, it's an opportunity to socialize with adults!). Will I return to the working world? Potentially. I do miss working, and I not only liked working, I was great at what I did. Of course I was, I bent over backwards to do the right things, deliver things on time (if not early) and exceed everyone's expectations. My boss is now my son...or my husband (depending on how you view the office). I love being a cook, house cleaner, teacher, chauffer, laundress, and playmate. Afterall, didn't some study recently estimate that the stay at home Mom would earn $130k in the real world? I prefer to get paid in hugs and kisses.
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).
In addition to our discussion with the high risk obstetrician about taking Plaquinel during my next pregnancy, we also discussed the main medical concern autoimmune patients have during pregnancy - the risk that the baby will develop something called fetal heart block. Fetal heart block is a condition that results from the nerve tissue around the heart becoming inflamed, and thus, causing the signal that is sent from the top to the bottom chamber to not happen when it is supposed to. It rarely ever results in a miscarriage, but what does happen is that the baby’s heart rate is MUCH slower than a normal baby in the womb. Instead of being about 120 beats per minute, it is about 60 to 80 beats per minute. The high risk obstetrician assured us that the baby is happy and healthy and very rarely needs attention while in the womb. What would happen, if the baby did have fetal heart block (detected between the 14th and 26th week of pregnancy through regular weekly monitoring at their offices), is that we would consult with the pediatric cardiology team and they would make plans to insert a pacer (it’s a small wire that helps regulate the beats) right after the baby was born. Then throughout the child’s life they would have to be monitored by a cardiologist, and at certain intervals, the pacer would have to be replaced (typically as they get bigger, and as they get older). This should NOT affect the child’s quality of life if properly managed.
The chances of a mother with an autoimmune disease having a baby with fetal heart block is between 15 and 25 percent. This is linked to the level of SSA and SSB antibodies the mother has in her body. Some autoimmune patients have just one of the antibodies, and some have both of them. Your risk of having a baby with fetal heart block goes up by having both, and your risk also goes up based on how much of each antibody is detected. I have both, and have relatively high levels of both, so the doctor estimated my risk of having a baby with fetal heart block is around 25%. However, the good news is that these are something that just don’t develop overnight, and I most likely had high levels of each antibody when I had my son. As he didn’t develop fetal heart block, my risk of the next baby developing it goes down, so the doctor believes that I’m probably more within the 15% to 20% range.
One thing the high risk obstetrician mentioned was that if at any point prior to 26 weeks they see a drop in the baby’s heart rate that would suggest fetal heart block, they can put me on the steroids that would potentially prevent the higher levels of SSA and SSB antibodies getting passed to the baby. By lowering these levels, they might be able to prevent the heart block as it will work to not only reduce my inflammation, but also the inflammation the baby has around its heart. This isn’t proven, and there are risks of taking steroids during pregnancy, which is why they wouldn’t just put me on them as a preventative measure.
On a similar note, Plaquinel reduces the inflammation associated with Sjogren’s by lowering the levels of SSA and SSB antibodies in my system. This should not only help with the fatigue and dryness I’m currently experiencing, but by lowering the levels of these antibodies in my body, it might help reduce the levels of these antibodies in the baby potentially lowering the chances the baby develops fetal heart block. Another great reason to have seen the high risk physician prior to becoming pregnant and/or taking Plaquinel.
I've got a positive attitude about this, and hope that we don't have to introduce ourselves to the pediatric cardiologists. However, if we do enter that arena, at least we're dealing with something that isn't life threatening. All we can do is hope for the very best.
So, if a physician told you by taking a pill once a day for the rest of your life you'd probably not develop any additonal symptoms of your disease, would you take it? Heck yeah.
What if the medication that is being prescribed is a category C drug? This really wouldn't mean much to anyone as about 90% of the drugs prescribed at category C. It also wouldn't really concern the majority of individuals who have Sjogren's Syndrome as a tenth are men, and 85% of the women diagnosed are already past their child bearing years.
So, why am I so concerned? From what my rheumatologist detailed, it takes about six months for the levels of Plaquenil to build up in my system. During this time, I may feel some positive effects from taking the medication, but I wouldn't necessarily get the entire benefit until I reached the six month mark. It also takes about six months for the drug to get out of my system. Given we were anticipating having a second child sometime in the next year (so the baby would be about 3 years younger than my son), the year is taken up by getting titrated onto the medication, only to have to be weaned back off of it. We were originally going to wait until my son was 2 years old to start trying for a second child, but as I would need to be off of this medication for at least six months prior to conceiving, we decided to push up the second pregnancy.
In order to be more informed, I moved up the date of my annual visit with my gynecology group (which was only accomplished by agreeing to see any doctor at any of the multiple locations). Although I explained to the receptionist on the phone that I was trying to move my appointment up as I had recently been diagnosed with a disease that would potentially impact the timing of my second child, I was never instructed to bring any documentation or forward any records. Big mistake. Nothing like talking with a physician who knows little about your disease, but insists that you should, under no circumstance, take any medication during a pregnancy. I realize it's the safe way out, but it definitely sent me into a bit of a panic that my rheumatologist said she wanted me on Plaquenil asap while the gynecologist was contradicting her by telling me I needed to wait until after I had stopped *** feeding the baby.
The good news from that appointment was that the gynecologist (who I had never seen before, and would avoid at all costs moving forward), wanted me to see the high risk obstetrical group at the local hospital. This physician was fantastic! I honestly wish I could have him as my one and only doctor (wasn't there a day where your doctor did everything and there was no need for a specialist?). He spent an hour talking to my husband and I about autoimmune diseases and how they can be controlled successfully through pregnancy without any impact on the baby (or the Mom). Noting I was extremely conservative, he suggested that I wait until I pass the critical development period (first 10 weeks) before beginning the medication. He's the one that pointed out 90% of all medications are category C. Amazing how views on one medication can sway so greatly in the medical community. I'm thankful that this high risk obstetrician has a good deal of experience with autoimmune patients who have been on and are currently taking Plaquenil.
I’ve been active and in great health all of my life – I played sports through high school and college, went to all of my regular check-ups, and by the time I was married didn’t really have any medical issues other than seasonal allergies. I’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 I’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 didn’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 wasn’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 – 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 Sjogren’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), I’m VERY fortunate to find out so early – 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 “sees” 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 “sees” the inside of its cells, it begins an autoimmune response protecting itself against what it considers to be a foreign substance. In Sjogren’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 isn’t enough information to understand whether developing autoimmune diseases is genetic, but supposedly most people aren’t predisposed to autoimmune diseases, and most of those who are predisposed never have the disease triggered.
I’m still learning a lot about Sjogren’s – 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, I’m at an increased risk for cavities, as well as kidney, liver, heart, and glandular diseases (including lymphoma) so I’m trying to become educated on how this is going to impact me long term. There’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.
Well, as you can tell from the name of my blog and my home page, I have a disease called Sjogren's Syndrome. Yes, some disease named after someone whose name nearly no one can pronounce on first try. Most people I've told ask, "how is that spelled?" I work well with examples, so here it goes - sounds like SHOW GRINS.
I know of one other person who has this disease - and it's not someone my age. Additionally, from everything I've heard from the rheumatologist and the high risk obstetrician I saw, I'm in a select group of women - those who have Sjogren's and are trying to get pregnant. Thus, the inspiration behind my blog. It's a way to share with my friends and family what I'm going through on a frequent basis, as well as reach out to other people who have an autoimmune disease or know someone who does and share experiences and information.
I've got quite a bit of digestion that has to take place, so with some patience and some non-existent free time, I hope to become educated about this disease and enjoy a symptom free (or reduced) remainder of my long life.
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