On the Other Side of Disease

The Real Rheumatoid Disease

Fact: Remission is Rare. Daily pain is Not.

(This post is part of a blog carnival in recognition of Rheumatoid Awareness Day.)

Three and a half years ago, I was diagnosed with Rheumatoid Disease. I was lucky, though. Very, extremely, rarely lucky. From July 2012 until March 2013, I was in miserable pain, but that was a blink of an eye in time compared to what it could have been. Once I rounded the corner into the second trimester of my second pregnancy, my symptoms alleviated, and since that time, I've been mostly symptom-free. In November 2013, my doctor officially said the "R" word: Remission. My miracle baby #2 was a blessing not only to my life but also to my body - and not a day - not one freakin' day - goes by when I don't think about how lucky I am that I'm on this side of the disease now.

I think about how lucky I am - and I think about how that could change any minute. As I draw closer to the birth of our third baby, I am terrified that the prison of a body I was caged in when my first child turned one will return after I deliver this child in a couple short weeks. What if I've "undone" remission? What if hormones or something about pregnancy and post-partum healing resets my body to a state of disease after 3 years of increased mobility, painless joints, freedom from stiffness, full range of motion, and never feeling flulike? What if this lucky break was just that - a break? What if my ability to squat, to kneel, to jump, to open a jar, to lift my babies - what if it's all taken away again?

This Tuesday, February 2nd, is the 4th annual Rheumatoid Awareness Day. I can recall the very first one - the year I was on the verge of remission and had no idea that the pain, anguish, and misery was coming to a closer for me so soon. Those days were dark - not knowing if I'd ever run and play with my toddler how I wanted to, not knowing if I'd have a pain-free body again, not knowing how much longer I'd have to deal with the isolating feeling of the invisible illness I was having to manage on the inside all alone. I wish I had known then that relief was coming, but all I really care about is that it did come! And thank God it did. But, we are so far from a cure for this disease. What made me lucky? Why did a pregnancy help me so much? Why can't we tap into that and find a cure for everyone? How can I be sure it won't come back again?

Remission. A word I worried I'd never hear once I began my heavy research about RA and rheumatoid diseases. A word I longed to hear and - thankfully - got to - unlike so many invisible sufferers. Being on this side of the the disease is a relief, a blessing - one I don't take for granted! But, without more research and a cure for this puzzling and misunderstood disease, this word is one I'm terrified won't always describe me. Even though I'm in remission and fully enjoying the benefits of being on this side of my disease, in a way, it still has a hold on me. I live in both gratitude and fear. I appreciate the time I've had of being in remission, and I pray that it will continue... but that comes with the understanding that it may not, I may be back on the other side one day, and that haunts me. The truth is that no matter how long I'm in remission, I'm never truly free from the disease. I'm never really unaffected by the threat of disease return.

This coming Tuesday, as we await the news of the groundhog (or in my husband's case, watch Groundhog Day again and again!), take some time to make yourself aware of Rheumatoid Disease, of how it might feel to have this disease, of how we need to find a cure for this disease, of what a cure would mean to so many people, or of how lucky you are that you don't have it. I know I will!

90% Baked: BBJ3

This morning, we had our 36-week appointment with my OB. It included a sonogram for which I've been extremely excited and even counting down weeks. I was proud of myself for even waiting as patiently as I did. And, finally, this big day got here. As the time of my appointment drew nearer, my heart raced a little more and my tummy fluttered with butterflies as I was anxious to just hear that this baby still looks healthy! Thank God, that was definitely still the case. Fluid level is great, cord looks good, Baby is measuring about a week ahead (which he has the whole pregnancy pretty much), seems to be about 6 pounds, 9 ounces as best they can estimate, and even has some itty bitty rolls we could see when he was all scrunched up in there! Quinn was with us today, and I asked the sonographer if we could try to show him the 3D images to show him what the baby looks like. The sonographer said that at 36 weeks, it's generally too hard to really see much because the baby is so crowded in the womb that it can be difficult to see past arms and legs. Well, she was spot on about that, because Little Man wouldn't let us see his face at all. We got peeks of his nose . . . . so we know he has one! But, we couldn't really make out the image of whose it looks like or what shape it is, etc. We saw he has a full lip, and we could see tiny distorted glimpses of his eyes, but he was being exceptionally stingy with the view. Sam and I had even talked about waiting to "see" him at this sonogram to know which name to go with... but no luck since Baby was not AT ALL cooperative in this endeavor. Both hands and both feet were completely covering his face - even an ankle and leg were blocking our view. No matter how the sonographer tried, no matter how many times she probed and pushed and completely abused the left side of my belly, no matter how active he was - he never moved those limbs away. The one thing he was NOT shy about in the least was his "boy parts." With all extremities successfully and busily obscuring his face, his penis and scrotum were in wide-open view. We got a great 3D image of it in all its glory, but nope - not the face. The occupant inhabiting the womb is, without question and without a doubt, a boy.

We know he is head down, he was facing my left side, and I was able to distinguish what body parts I was feeling pushing out on my right side... the back of his head and his spine. The sonographer kept commenting on how very active he is - and yes, he is. But, she also commented on how shy he was being about letting us get a good sneak peek of him! Oh, and another very cool thing to note at this stage that we got to see was Baby swallowing and practicing breathing. Pretty neat! Anyway, the appointment continued with a visit with my doctor. She said everything looks exactly as it should, which is great news as always! I'm relieved my blood pressure has continued to stay normal and healthy - since it started elevating at 37 weeks when I was pregnant with Banner. I'm also happy to report that my weight gain has been the least with this kiddo so far. I've only gained 19.5 pounds with him at this point, so I'm pretty stoked about that - although I'm not sure how that is happening. I didn't gain a pound in the last two weeks - and that just seems impossible after what I know I've eaten this past week! I'm also not sure how that's true when I feel SO heavy! But, I digress. My OB was pleased with everything and we are on track for a C-section date of February 16th. In short, the appointment went very well, but while I was beyond grateful that he is healthy and that all looks great still, I was disappointed I didn't get to see his precious face yet. I quickly got over it, though, because, well - less than 3 weeks from now, I will be able to actually see him!

Eek! 3 weeks! Three little weeks left with my family of 4. Three short weeks of sleeping through the night (well, let's be honest... with Banner and Quinn, it's usually interrupted sleep, and usually shorter-than-I'd-like sleep, but "through the night" by definition). Three weeks to tie up loose ends and get as much done as I can at work and at home before there's another little human to tend to. And, at the same time - still 3 more weeks to deal with this awful reflux, to feel the insane pressure of this little boy's head down south, to waddle around feeling like my water could break at any moment, to try holding my big boys on my lap with complete failure as neither of us is ever comfortable, to lift and bend and squat in complete discomfort, to try to get comfortable in bed after hoisting a big belly and a body pillow when turning over, to try to shave and bathe and dress with very little ease. Sounds like quite a bit of time left still when I put it that way!

But, it will be here in what feels like tomorrow, I know. So, I'm trying to savor this time and give BBJ3 more time to bake in this ever-growing oven of mine. I'm trying to enjoy these last weeks of his rolling and jabbing because I know, without a doubt, that I will definitely miss that part of being pregnant. So, with these coming weeks, we will continue to just nest and get things in order. Although, I have to say, I'm pretty impressed with how "ready" we are - if a family or a person could ever truly be "ready" for such a life-changing event of adding another person to your family. I have his baby book, we have his clothes washed and put away, we have blankets and swaddles and diapers and wipes... and an infant carrier ready to be added to the mix of carseats in my back seat, we have bottles and pacis to be sanitized, we have frozen meals in the freezer (thank you, Mom & Kira!), we have the date and time of his (private) bris set, we had a sibling class and a "Babymoon" (more on that in another post) and a baby "Sprinkle," we had maternity pics taken, we have sheets and crib and bouncer and Moses basket all ready and waiting, we have gifts for the boys to give Baby and (probably more important) for Baby to give to boys, we have hospital bag (mostly) packed, we have the big boys settled in their big boy bunk, and we have two big brothers who seem to be ready to meet their little brother!

My belly button is closer to popping out with this pregnancy as it ever has been (it never did before, and it just might this time!). I feel like it's an oven timer just waiting to pop out: "DING! All done!" So true. So very close to being "all done" and meeting this little fellow - who may or may not actually have a name now! (No really... I don't even know.)

"Interesting Chicken" & Rosemary Chicken & Potatoes

Several years ago, I came across the Kraft prepackaged chicken mixes. All you had to do was toss chicken in the bag of pre-measured ingredients, and voila, your meal was ready to cook. There was a bacon and cheddar mix that we LOVED, and we called it "Interesting" chicken because bacon flavor mixed with chicken flavor was . . . . well, interesting. But interesting in a great way. So when Kraft stopped making this mix, we were upset. Luckily, the company posted ways to make this recipe on their website, and it's pretty yummy! We also loved the little packets McCormick seasoning used to prepare for costumers with pre-measured seasonings so all you had to do was mix in some olive oil and boom - chicken was seasoned! Again, our favorite one stopped being sold at our local grocers, so we checked out the McCormick website, and again, we were in luck! So, here are two of our favorite recipes that took a little bit of research to recreate!

"Interesting" Cheddar Jack & Bacon Chicken

Ingredients:
-1.5 pounds boneless, skinless chicken
-1 pouch Shake 'N Bake seasoned panko seasoned coating mix
-1 cup shredded colby & Monterey Jack cheese
-2 teaspoons Oscar Mayer real bacon bits
-1/4 tsp smoked paprika

*Preheat oven to 375 degrees. Spray baking sheet with cooking spray. Combine all ingredients in a bag or bowl, lay out chicken on baking sheet, then bake 28-30 minutes.

Rosemary Chicken & Potatoes

Ingredients:

-1 teaspoon minced garlic

-1 teaspoon paprika

-1 teaspoon crushed rosemary

-1 teaspoon salt

-2 tablespoons olive oil

-1/4 teaspoon black pepper

-1 to 1.5 pound boneless, skinless chicken tenders

-1 1/2 pounds red potatoes, cut into 1-inch cubes

*Preheat oven to 425. Mix oil and all seasonings in large bowl. Add chicken and potatoes; toss to coat well. Arrange chicken and potatoes in single layer on foil-lined baking sheet (15x10x1) sprayed with no stick cooking spray. Roast for 30 minutes  or until chicken is cooked through and potatoes are tender, turning potatoes occasionally.

82.5% Baked: BBJ3

When I was 34 weeks pregnant with Quinn, I barely complained. Check it out for yourself... that post is back here. But, even though I'm finally "very pregnant" in winter and not dealing with three-digit temps of summer while in the later part of pregnancy, and I've not gained as much weight as I had at that point with Quinn (only 18 pounds now compared to 25 at that time), I'm singing a different tune this go-round. I've come to think of the end of the third trimester as an unraveling. My most recent analogy of the third trimester is that of a visit to a restaurant with my children. It goes a little something like this:

It all starts off okay. We are excited to be at the restaurant, a place where we are happy to be and ready for a great meal. We are seated at our table, everyone is happy and calm, we are considering what to order while the boys happily color on a children's menu or speak quietly about what they want to eat. Then, we wait, and wait, and they start getting louder and more impatient. They whine and complain; they tug on our arms asking when will the food be there. They push away from the table; they need to go to the bathroom, again; they change their mind about what they ordered. Then, the food finally arrives, but chaos continues to ensue: they drop their food on the floor; they spill their drink; they refuse to eat what they ordered; they want what the other brother ordered; they interrupt adult conversation; they start crying or yelling or both. Other patrons are staring, and the waiter is not coming fast enough with the check. Sam and I look at each other with frustration thinking: "Why did we even come here?!" or "This sucks!" as the scene continues to fall apart, tantrums begin or continue, and not one word of thanks is given for a "fun night out."

I know, it's a weird analogy, but in the past couple of weeks, especially throughout winter break when we've had ample opportunities to go out with the kids and chaos prevails, I find myself thinking, "This is what pregnancy is like - right here!" Everyone's been asking how I've been doing lately - how I'm feeling and if I'm hanging in there. And, with Banner & Quinn, both pregnancies had me barely complaining, so when the stereotypes of the third trimester have started seeping their way in to my current status, I was not thrilled. I feel like my body IS chaos, a complete disaster right now.

True, things could be worse, and true, we are both happy and healthy right now, so I won't complain about that at all! I'm grateful that I feel my baby moving inside my belly ..... all the time and with such force! I'm also grateful for every day he chooses to stay inside it, grateful that my body hasn't given out when it so feels like it could any second! So, yes, thankful and gracious for this beautiful time.

At the same time, I'm gonna go ahead and start complaining. That's what I said to my OB last week at my appointment. When she walked in, she said, "How are you doing?" I said, "I'm good, but I'm ready to start complaining." She said, "You've been so good this whole time; I think it's about time you start complaining. Tell me." So, I went on to tell her about my sciatic pain on the left side of my lower back that shoots down my bottom with every step. Luckily, this pain comes and goes from one day to the next, but it's there about every other day. I told her about the severe pressure I've been feeling way low and how this little nugget doesn't utilize his full space. She agreed I'm carrying low, and we discussed some options for belly support, but nothing's helped so far. My uterus comes up way higher than I've ever felt him, so while he has the space, he's not stretching up that way. I'd actually welcome a jab in the rib cage or a difficult deep breath because he's up so high... because BBJ3 is hanging out a little too low for my liking. He's head down, and he pushes out to the sides rather often, but never upward. Most every day I imagine this little guy is going to just fall right out of me. And finally, we talked about the frequency of my Braxton Hicks contractions... several times an hour, but never painful. They do take my breath away and I often have to stop what I'm doing to just breathe through it - but mostly just "uncomfortable." My OB says all of this is completely normal, that everything I'm describing is pretty common for a third pregnancy at this point, and that most women in my same position complain much earlier. I was actually relieved to hear this. I like words like "common" and "normal" when I feel like things are wrong or unusual. It's reassuring I'm not the only one.

Since that visit last week, lower leg cramps are starting to get to me, even if I eat a banana every day. Last night was the worst. It started with my left calf cramping up. Once I woke up enough to realize what was happening, I was able to work it out by flexing my foot up. As that was resolving, my right shin started cramping, so I needed to point that foot for relief. So, I've got one foot flexed and the other pointed, and then my right big toe started cramping as I pointed it. I used my hands to pull it toward me while pointing the other toes down, and that's when my right hip decided to trigger the fire of a thousand suns. On my one day to "sleep in" (whatever that means now!) because I don't have to rush off to work, I was up long before the boys were, standing over the edge of my bed trying to uncramp myself without waking Sam.

I then got back in bed and tried not to move too much, so I wouldn't set off another round of Charley horses. But trying to get comfortable when 33 weeks pregnant is not an easy feat. There's a bit of "hoisting" that goes on between the large belly and the body pillow. But, I did finally get comfortable... and then Quinn came in our room, and sleep time was over.

Yesterday, the day winter break ended and I returned to work for staff development day, I am pretty sure I had a touch of food poisoning. I started feeling pretty crummy Sunday afternoon out of the blue. My tummy felt uneasy, I was nauseous, and nothing sounded appealing to eat at all later in the evening. I was up every other hour with a belly ache and chills, and by the morning, I was severely nauseous and faint feeling. I pushed through it because I wanted to get to work and not miss a day before my leave starts in February. And, when I finally threw up like I've never thrown up before, I felt so much better. But, being sick while pregnant - not fun, and certainly not an easy way to welcome the new year or the new semester.

Like I said, chaos. Unraveling. Reflux, leg cramps, Braxton Hicks, sciatic issues, shooting pains, occasional nausea, kick counting, bending down to help dress my kids or clean a spill, trying to rock a Quinn who can't get comfortable on my disappearing lap or to lay with Banner on the top bunk of his bed, trying to name this baby - and who he's named after and who his Godparents are, all while returning to work (where the mere idea of standing up from my chair to go make a copy or go check my mailbox makes me cringe) and trying to keep up with these two big boys of mine, it all makes 6 more weeks sound like a really, really, really long time! I know it will fly by, and later I'll miss the feel of the jabs and hiccups and twists and turns, or the (relative) quiet of the night. But, I'm just being honest. This is 33 weeks pregnant, and it ain't gonna get any easier. So 6 more weeks until B-Day... 41 days to go... it's so soon...it's so far away.