Monday, August 30, 2010
Hard to believe how quickly time has gone. I was worried that this last trimester would inch along...but it's going fast, and I'm not sure I'm ready! (Are we ever ready for those little bundles of joy?)
We're up to weekly appointments at the OB's office - and things are looking good. At my last appointment, Kit Kat was weighing in at 4 lbs on the nose, looking good and moving like crazy. The sonographer wasn't able to get a good picture, but I'll be sure to post another picture of little Kit Kat soon. I'll be back in tomorrow, and I'm hoping the big K will cooperate.
Deirdre was with us last week, and she had her heart set on seeing the baby's nose, ears, eyes, and hips (the latter being the most recent body part to be added to her repertoire.) However, we didn't have time to dwell on the lack of photo op, because there was something else afoot with KitKat.
Thankfully, nothing is wrong - and all looks good, but the sonographer detected what's called premature atrial contraction - a condition that causes an irregular heart rhythm. It sounds as though the baby's heart skips a beat, but from what I've read online, it's not that the heart actually skips a beat, (darn, those cliches!), but rather that one heart beat comes too close to the next, so that the following beat is actually forced to pause a split second.
The good news (and thankfully, there's no bad news here at all...) is that the PAC was very intermittent, and the doctor thinks it might even go away before delivery. And if it doesn't, no one seems concerned. We'll know more after this week's appointment, as my weekly non-stress tests were scheduled to begin anyway, and we'll be able to see and hear if the irregularity is still occurring.
Note that a non-stress test, or NST, is performed by strapping a little heart monitor (kind of like an EKG machine) to my belly, and tracking the baby's heartbeat and contractions over the course of about 20 minutes. Sometimes it can be shorter, sometimes longer...but Johnny and I quickly learned that once the NST's begin, a good book or magazine is a necessity. When I was pregnant with Deirdre, they upped the NST's to twice a week...and there's only so much chitchat a husband and wife can have in the presence of doctors, nurses, and the like!
When I asked the cause of the PAC, my doctor chalked it up to immature wiring, or an immature connection - which should right itself as the baby continues to grow and develop. (Please note - this is NOT meant to be a medical explanation for PAC. Please consult your doctor for additional details!)
And when I asked if there was any relation to the congenital heart block we've been checking for (due to lupus antibodies I carry), Deirdre's VSD that was discovered when she was born, but that disappeared at her 6 month cardiologist appointment, or to my mitro valve prolapse condition, my doctor said no. Guess these three members of the Gorman clan just insist on adding a little "hearty" spice to life!
So - that's the big news on the baby front. Check in later in the week or next week for another update. Cross your fingers that Kit Kat's feeling photogenic!
Friday, August 27, 2010
What's even crazier - is that come October 13th, or there abouts, KitKat is going to emerge with, ideally, 10 fingers, 10 toes, a perfectly formed little body with all the fixin's. And this happens day after day after day to women all over the world. Wow! I mean WOW!
I think my appreciation for this process has increased since I've seen Deirdre blossom into the sweet young thing she is. I remember just like it was yesterday when she emerged, finger, toes, and all, and to look at her now, as a walking, talking bundle of joy...well, it's just too much to comprehend sometimes. (And, no, I'm not burying my head in a box of kleenex right now. I've actually been a lot less emotional this pregnancy...but I guess there's still time, right?)
I got to thinking about this concept particularly because my friend from Ottawa, with three lupus pregnancies under her belt, put me at ease about all of my recent lupus activity. She said she, too, spilled protein all throughout her pregnancy...and she just figured that our kidneys are simply under a little extra strain during the 9 months we're carrying the baby.
And if you really think about what my body is trying to accomplish right now - putting all of the finishing touches on Kit Kat - you better believe my body is being taxed! So to Karen - thanks for speaking from experience, and to KitKat - here's to just 8 more weeks of fireworks. Once you're born, I'm sure your dad, sister and pug brother will appreciate hearing all about your time in the pen. At least I'll finally be able to share the wealth!
Wednesday, August 25, 2010
In fact, there was a quote from the book that stuck with me to the end, and I thought it was particularly appropriate to feature here on Despite Lupus. The narrator, Larry, one of the 2 husbands in the story, candidly describes what it was like when Sally, his wife, suddenly becomes ill. It is discovered within a few pages that she has contracted polio, was confined to an iron lung for a period of time, and is eventually left severely handicapped and must use the help of braces in order to walk. Here are his words describing what it was like moments before she was diagnosed:
"Order is indeed the dream of man, but chaos, which is only another word for dumb, blind witless chance, is still the law of nature.
You can plan all you want to. You can lie in your morning bed and fill whole notebooks with schemes and intentions. But within a single afternoon, within hours or minutes, everything you plan and everything you have fought to make yourself can be undone as a slug is undone when salt is poured on him. And right up until the moment when you find yourself dissolving into foam you can still believe you are doing fine."
Fitting for folks with a chronic illness, don't you think? You can plan all you want, but no matter how well-thought out life's agenda may be...there's always the chance that your plans could suddenly be revised. Without warning, without cause, and without your consent. When that happens, how will you react? What will you do when life throws you your own personal curve ball, perhaps in the form of lupus or another chronic illness? Will you try to dodge it, run away from it, or will you live well, despite it?
Monday, August 23, 2010
My local lupus foundation (LFA, DC/MD/VA) recently provided these guidelines for an Anti-Inflammatory diet to my lupus support group. I think they have some great tips - I've tried (and had success with) many of the items mentioned, so see what you think. As always, I recommend checking with your doctor before making any major changes to your diet or lifestyle regimen. No need to put the body into a state of shock. I'd say lupus has that base covered, don't you?
Have any other ideas? Feel free to leave a comment. I think all of us are up for suggestions on how to tame the swelling!
An anti-inflammatory diet can help reduce symptoms of inflammation and prevent the development of complications and advanced diseases related to chronic inflammation.
General Dietary Guidelines
-Incorporate fresh fruit and vegetables into your diet – they provide a good source of
-Minimize your consumption of processed foods
-Aim for a large variety in the types of foods you consume
-Fresh foods are always best
-Choose organic when possible
Minimize the intake of:
-Dairy products (except high quality natural cheese and yogurt)
-Animal protein (specifically red meat)
-Highly processed foods (crackers, cookies, breads, canned products)
- Products made with high fructose corn syrup.
- Saturated fat by eating less butter, cream, high-fat cheese, unskinned chicken and fatty
meats, and products made with palm kernel oil.
- Avoid margarine, vegetable shortening, and all products listing them as ingredients.
-Avoid all products made with partially hydrogenated oils of any kind.
Increase the intake of:
-Vegetable protein, especially from beans. Become familiar with whole-soy foods
-Fiber (aim for 30grams a day)
-Omega-3 Fatty Acids; specifically salmon (preferably fresh or frozen wild or canned sockeye), sardines packed in water or olive oil, herring, and black cod (sablefish, butterfish); omega-3 fortified eggs; hemp seeds and flaxseeds (preferably freshly ground); or take a fish oil supplement (look for products that provide both EPA and DHA, in a convenient daily dosage of two to three grams).
- Choose whole grains over refined
-Vitamin C – Citrus fruits, green peppers, broccoli, strawberries, blueberries
-Vitamin E – Vegetable Oils, Kiwi, Wheat germ, Green leafy vegetables
- Polyphenolic antioxidants – Tea, Coffee, Soy, Fruits, Olive Oil, Chocolate, Cinnamon,
-Vitamin A – Carrots, squash, broccoli, tomatoes, mangoes, oranges, peaches, apricots
Anti-inflammatory Supplements: *A doctor can provide dosage amounts and instructionsFish oil
**Information above reposted with permission: Erin Lewis MS RD LDN CNSC
Friday, August 20, 2010
Before I started on the iron, I was experiencing an all-over malaise feeling, a bit of an upset stomach, a headache now and again, and pretty significant fatigue, with my naps growing closer to 2 1/2 hours or more. What's more, I could have probably gone to bed every night at 9 o'clock, and I'd developed the inkling (and ability) to close my eyes mid-morning (say around 11am) and fall right asleep. Of course, I wasn't allowing myself to do so (I DO have a child to take care of!), but the fact that I was so sleepy, on top of getting 9-10 hours of sleep at night and an extra 2-3 hours during the day, had me baffled.
Of course, the way I work, I had a million and one reasons (everything BUT anemia) as to why I was feeling so crummy: third-trimester pregnancy, a couple of late nights, too much dairy, maybe even lupus. Whatever it was, I just figured I was going to have to grin and bear it. I had every intention of mentioning it to my doctors at my next appointment, but I certainly wasn't going to make a big deal about it. Why is it that when we're feeling bad, our instinct is to just "deal", rather than take a step back and think, "I feel crummy all of a sudden. Could there be a concrete, medical explanation?" Instead, we tell ourselves that we're imagining it, being dramatic, or that we just ate too much dessert. (Speak for yourself, pregnant lady...)
Thankfully, I didn't have to grin and bear it too long, because my high-risk OB was all over my blood tests. As mentioned a few posts ago, my bi-weekly sonograms have turned into weekly appointments, and the increased frequency seems to have come in handy. My doctor picked up on my screwy hemoglobin and determined pretty quickly that I was anemic. And at my last appointment, when I mentioned how tired I'd been, she confirmed that my low hematocrit level (pre-iron pills) would have definitely been causing the baffling fatigue.
So post-iron supplement, I'm feeling fabulous. I can't say I'm feeling particularly light on my feet, (who could be, with a big ole' belly like this one out in front?), but I am feeling pretty darn energized. It was such a significant change from the way I was feeling - I have no idea how I was even functioning. (Isn't that always the case, after the fact?) I also can't believe it took me almost a week to pick up my iron pills from the drugstore after my doctor prescribed them. (More on my reluctance to start OTC drugs immediately upon recommendation in a future post.)
I've even increased the iron in my diet, per doctor's orders. In addition to the pills, I'm grabbing a big bowl of iron-rich cereal every day and adding spinach to our weekly dinner menu, and it's really paying off. I think I'm going to make it these next 8 weeks or so. For awhile, I wasn't so sure!
Wednesday, August 18, 2010
Last week, I blogged about two frustrations I had - 1) the few odds and ends that I wasn't able to tackle around the house due to the fact that I'm still on "toolbox hiatus", and 2) the fact that my mom wasn't taking very good care of herself. I'm happy to announce that in both cases, my frustrations have been eliminated. My blogs have been heard. My family has responded. The Godfather has made her mark.
First - on the baby preparations front - my husband and brother-in-law came through, big time. Johnny cracked open a fresh can of paint and started painting the two remaining items in Deirdre's big girl room. They've been prepped and primed - and the ball is officially rolling. I can't thank him enough for making that happen. (And I PROMISE I wasn't nagging him...he just up and did it. Talk about a doer!)
And then, if that wasn't enough excitement for this nesting, 31-week pregnant lady, my brother-in-law sends me an email last week that says, "I've been reading your blog. I want to help. Book me for some toolbox time", or something to that effect. He insisted on coming by one evening last week to help with knobs, mirrors, switch plates, hangings, etc - all the stuff that I've been dying to do myself. The room looks fabulous...and is nearly there now. How nice of my bro-in-law to extend the offer, huh? Plus, the night he came over, my sister and her kids came along, and she made dinner for the whole crew. (Johnny was out of town at a family fuction - representing the Gormans as only he could. Too bad he had to miss out!) Dinner was fabulous - she just swooped in, brought a picnic basket of ingredients, put the whole thing together, and left the kitchen spotless. What a baby-on-the-way gift! It was the greatest!
Secondly, and most importantly, since last week, my mom has made major strides in regard to her health predicament. I'm so proud of her. I suppose she got wind of the fact (from a little bird named my Dad) that I was less than pleased with her situation, so she took it upon herself to make things happen, Despite Lupus style!
Not only did she make a follow-up call to the doctor last week, she made a follow-up appointment, and boy, did she get results. She, of course, had to do some fancy footwork to a) get the appointment, b) work with the receptionist in order to get the right kind of appointment, and c) to convince her that no, just talking over the test results over the phone wasn't sufficient. She needed to be seen, and she needed to be seen pronto. Go, Mom!!!!
And was her appointment ever necessary! Turns out the first doctor in her primary care office who had given her the original diagnosis of "could be pancreas, liver, or stomach" was a little off. Looking at the results of the tests with her regular doctor (with whom she made this follow up appointment), it came to light that something entirely different was going on. Right then and there, her doctor made a definitive diagnosis, put her back on a medication the other doctor had taken her off of, scheduled her with another GI specialist for an appointment within the week, and set her up for a consultation for additional GI tests that very same week. Talk about results!!!! I'm so happy she took it upon herself to get exactly what she deserved - treatment, attention, and most importantly, answers.
So where do I get the inspiration, motivation and encouragement to keep living well, despite lupus? From the people mentioned above. Simple as that!
Monday, August 16, 2010
Not so long ago, before I realized what living well with a chronic illness really meant, a couple of swollen joints would have meant nothing to me. It would have been par for the course, just part of the normal routine. In fact, I was so accustomed to swelling and pain that I would have probably considered a handful of swollen joints a sign that perhaps I was in remission. Being completely pain-free was so far from reality that having even the majority of my joints operable would have been a real victory.
It's good to know how life has changed. But that's no reason to settle now. I have no intention of allowing my standards to creep anywhere close to what they used to be. And that 5 mg of prednisone I take every other day (i.e. 4 days a week)? I'm averaging a little closer to 5-6 days a week, per doctor's orders, rather than every other day. So I can't get too cocky about things. Come the arrival of that little baby of mine, I'm sure I'll need to increase it even more, given the drop in hormones, added fatigue, and stress of the main event.
So my goal? To get these last few joints to start cooperating, the good old fashioned way: by continuing to take extra-special care of myself with added rest at night, long naps during the day, low stress level, even lower activity levels (i.e. nixing extraneous travel and social engagements), and the willingness to ask for help when I need it. Wow - I've got some living well to do, don't you think?
Friday, August 13, 2010
She’s recently been undergoing tests for tummy trouble (could be her stomach, liver, or pancreas), and her primary doctor has referred her to a Gastroenterologist. Unfortunately, as is often the case, she’s not able to get into the GI specialist for another month and ½, which will be almost 2 months from the time her doctor made the referral. Now to give her a little credit before I give her a real lashing, she did spend a good amount of time on the phone with the GI receptionist making the appointment, having to fight tooth and nail to be seen at the beginning of the month of September, rather than at the end. That said, however, she’d promised me before she called to make the appointment, that if she had any trouble getting in, she was going to call her doctor back and ask if they could pull some strings to help her get in earlier.
So did that happen? Nope. Has she been experiencing symptoms in the meantime? Yup. Has she been feeling worse and worse as the days progress? Pretty much. Does she have any intention of making a stink to ensure that she gets the treatment (and attention) she deserves? Not at present.
But, of course, if her daughter has anything to say about it, she’ll be singing a different tune within the week.
Now don’t get me wrong. I know how difficult it is to fight the good fight when you’re ailing. When you’re sick and tired, and struggling to put one foot in front of the other due to lack of energy, lack of sleep, or both – it’s practically impossible to put up your dukes and stand up for yourself. But that’s exactly what you must do, particularly when you’re feeling crummy.
I think finding the motivation and drive to get the medical treatment you deserve is just about the hardest thing out there. You don’t feel well, you’re probably feeling a little downtrodden about life in general, and you may even be a little scared of what the doctor might say. So the last thing you want to do is to think clearly and critically in order to state your case in front of someone whom you already feel doesn't have time or won't make time for little ole' you.
But that’s exactly the point. You ARE important. You DO matter. And no one but you is going to make that apparent to the doctor. I can guarantee you – my mom’s primary doctor isn’t losing any sleep over my mom’s symptoms right now, and that GI specialist doesn’t even know her name. And the only person who can change that? My mom.
She’s got to get on the horn, assert herself, and confirm the following:
So to those of you out there who are reluctant to follow up with your doctor, call in to the office nurse, or assert yourself with the receptionist in order to be seen…know that while you’re not alone, it is you alone who can improve the situation. To use a quote from my book, Despite Lupus:
"Assertiveness isn’t about brawn or brute force;
Wednesday, August 11, 2010
Truth is, by the end of last week, when I still had a handful of items on my list of things to do before Deirdre's big girl room was complete, it was really starting to get to me. Just going into the room made me mad - I saw knobs that needed to be attached, screws that needed to be tightened, hooks that needed to be hung, and other odds and ends that, under normal circumstances, I could have done in a heartbeat. But since my joints weren't cooperating, the only thing I could do was stare and get myself all steamed up. I just had to wait until Johnny was (or is, for those projects still outstanding) able to help me.
(A quick side note - my considerate and oh-so-attentive husband has put together a table, a kitchen stool, hung a ton of stuff, put up two window treatments, cooked dinner multiple times and done more than his fair share in the time that I've been on toolbox hiatus...so it's not his fault at all. It's mine, for obsessing over the things that I just can't do.
Of course, that said, what's even worse, in my accomplished-driven mind, is that normally, I would have assembled and hung all of the stuff that he has done, freeing him up to do some of the more taxing projects that are still lingering. Ugh! I can't cut myself a break, can I?)
So, to say the least, I needed a diversion. I was obsessed...and I needed to stop, and force myself to redirect my efforts.
My first step - perspective.
I needed to step back, and take a good, hard look at why I was frustrated: Was I really upset with Johnny for not dropping everything to help me out? No, of course not. These were minor tasks that weren't pressing, and he's been out of town almost every other weekend since I started working on the room. I just needed to step away from the whole thing and be a little less, ahem, driven/task-oriented/stubborn. (Of course, secretly, I do wish I could make him my little minion for a day!)
Two - was I really that desperate that I needed to hire a handy man (I'd come up with a list of about 5 possibilities, including flying my dad in from Indiana) for X-dollars an hour to come and help me finish up a room that didn't need to be finished for another month? No, of course not. Again, cue a little patience and logic.
And finally, was I really that disappointed with myself for not being able to do a couple of odd jobs around the house, that I needed to think about the insignificant ordeal morning, noon and night? Nope, not really.
What I was mad about, was that I was letting lupus get the best of me. I was allowing my desire to stay on schedule, my obsession over my to-do's, and my need to finish each and every project I started get in the way of my health. So you know who I was really frustrated with? Lupus. And in my opinion, she can handle (and deserves) the brunt of my frustration. She's the one causing the swelling...she's the one limiting my abilities. It's not me, or the handyman, or Johnny. It's her. I needed to stop blaming myself or anyone else around me, and move on.
Whew! Step one, accomplished.
Step two - refocus.
I needed to start focusing on what I could do, not what I couldn't. So I sat down, and made a list of the things I could still do (and needed to do) before baby #2 arrives (which, of course, corresponds to when Deirdre's big girl room needs to be ready), and I came up with some real winners. I have several projects to tackle that won't tax my joints, but still need to get done. I was definitely postponing them because my plan was to tackle the room first...but you know how plans and lupus go. When stymied by lupus, you often have to go back to the drawing board, revise your plan, and start again. And so that's what I've done. Rejiggered my to-do list so that all of those non-taxing items are at the top, and the room to-do's are at the bottom.
Step two, accomplished.
It feels so good to be productive and "back at it" again - rather than constantly beating myself up over the fact that, at present, it isn't advisable for me to do anything too taxing with my hands. And as my belly gets bigger, I realize that in less than two short months, there's going to be another little project that I'm going to need to tackle. And I don't think taking a "KitKat hiatus" is going to be quite as easy as tossing aside the screwdriver.
Rest up, relax, and save my joints, right? I've got a baby on the way!
Monday, August 9, 2010
While I failed to capture a picture of this new container on film, I'll do my best to describe it: First of all, it's made of a really soft plastic - very malleable, so it bends easily, like a ziploc baggie would. Now - if you think for a moment about the intended use of said container - that it is to be filled to the brim with bodily fluids - you can imagine how unsuitable a flimsy, baggie type thing would be! Of course, there's a secure, screw-top lid, but it's kind of in the middle of the container...hard to, ahem, get to, if you know what I mean. Granted, the container is about a third of the size of the old one, which is nice for concealment purposes, and it's probably more environmentally friendly, but just think for a minute how awkward a contraption like this would be for a 29-week pregnant lady to use? Uh-huh. That's what I thought.
On top of the challenging logistics involved in the actual 24-hour collection because of the new container, I opted to take it to a follow-up OB appointment, rather than making an extra trip to drop it at the lab. In I walk with my bag of goodies, only to find out that the OB's office isn't up to speed on this new container. So - I have to transfer my hard-earned collection from this flimsy baggie-type thing into the old standby container. NOT an easy task, I can assure you. The nurse offered to help, but I could tell she really didn't want any part of that shabby looking container. I managed through - but I tell you - I'm going to do my best to keep that protein in check. That's an exercise I don't want to repeat anytime soon!
Friday, August 6, 2010
Dr. Mary Beth Rhomberg, Associate Director of the American Optometric Association and an Adjunct Assistant Professor at University of Missouri-Saint Louis College of Optometry, will answer questions related to how lupus can affect your eyes and vision.
Dr. Michaell A. Huber an Associate Professor and Oral Medicine Subject Expert, Department of Comprehensive Dentistry, the University of Texas Health Science Center at San Antonio, Dental School, San Antonio, Texas, will answer your questions related to oral and dental health and potential problems that can occur.
Questions must be submitted by Monday, August 9th (as do your entries for the CafeMom contest I mentioned on Wednesday), and you can submit your questions for the LFA here. To read more about the "15 Questions With..." seminars, or to catch up on past transcripts, click here. The answers to your questions, if selected, and others will be posted on the LFA website on August 23rd. Why not shoot over a question or two? It couldn't hurt! (Although actually going to the dentist usually does!)
Wednesday, August 4, 2010
What do you have to do to enter? Just finish the following sentence:
"Despite lupus, I..."
I know a ton of you out there are continuing to live well, despite your disease. Just like me, you've figured out how not to let lupus keep you down - how to keep plugging along - and how to actually have a fun, fulfilling life, despite it. I've had the pleasure of hearing from you via email, over the phone, in person, and in your blog comments - but now's your chance to tell the world about it!
What are you doing, despite lupus? Enter and win today!
Monday, August 2, 2010
So while Kit Kat is doing well - the amniotic fluid levels look good and the PR intervals still look great (so no heart block) - some of my tests aren't looking too good. I've been spilling protein for several appointments now, and my rheumatologist recently ordered a 24-hour urine test to see if that is still the case. I've left regular urine samples at every two-week OB appointment, and did a follow up urine culture there at last week's appointment, but my rheumy wasn't satisfied with that. So it was back to the orange jug for me. (Stay tuned for Friday's post for more on the 24-U test!)
We don't have the complete results yet - but my blood work is also showing that my lupus is a little screwy. Uh-oh. Did I declare my screwdriver off limits a day too late? Good news is that I'm not feeling crummy at all - in fact, I'm feeling very good. But I've now been sentenced to add iron pills to my cocktail of drugs (because I'm anemic), my C3 is low (and my OB tells me it usually goes up during pregnancy, so that's even more of a concern), and my double stranded DNA is falling. (Is that the correct way to describe it???) All in all not total cause for alarm, but like I talked about in a post last week, it's important to consider all of these things collectively, as there may be something afoot.
As far as the iron goes, I always seem to be a little on the anemic side (even without a baby in my tummy), and I went on iron pills during my last pregnancy, so not much has changed there. Interestingly, my OB passed on writing a prescription for the iron, so I'm just going OTC this time. Sounds good to me!
As far as everything else, I'll continue my toolbox lock-down, increase my napping a bit, and we'll see what happens. I'm back to the OB's office this week for an extra, interim appointment to make sure things aren't getting too out of control, but my doctors just seem concerned at this point...not worried, so neither are we. And the good news, as my OB pointed out, at 5mg of prednisone every other day, I have a lot of leeway if I need to increase my dosage. We'll keep you posted - as you well know - there's never a dull moment in a life with lupus!