Rheumatoid Awareness

Two months ago, my rheumatologist told me that I'm currently in remission from RA. I'm one of the lucky ones, so far, who only suffered with it for a year before finding relief during pregnancy. Remission has continued to last 4 months postpartum, and I'm hoping to continue to experience relief from joint pain and stiffness for a very long time!! However, the fear of it returning is a constant concern. It's constantly on my mind, and if I feel a joint start to stiffen or feel weak or achy, I'm immediately frightened that these pain-free days of remission are numbered, and worse - that my life as a prisoner in my own body is coming back.

Prison. That's truly how it felt. That analogy came to mind daily as I figured out how to maneuver my body, how to find a way to handle situations that could be embarrassing in public because my body wouldn't behave, and mostly, how to cope with the mental anguish that my body hurt and I was limited. I feel like a free woman right now, and it makes me so appreciate how easy life is without this disease. But, the prison isn't far from my mind, and it often haunts me. I will lay awake in bed at night terribly anxious about the impending return of symptoms if I feel the slightest ache. I'm more than grateful for the reprieve and the reminder of what life is like without symptoms. I've had to relearn to enjoy my body - not cringing at the thought of getting on the floor with my toddler to play, not grimacing as I squat down to use both unlimited knees and pain-free wrists to pick up my infant from his play mat, not wincing as I get in and out of the car or put my purse over my shoulder or dry my hair or . . . the list goes on! I do not take these actions for granted any longer.

I still follow a wonderful blog whose author has helped establish Rheumatoid Awareness Day on February 2nd. This year is the second annual Awareness Day, and I'm happy to help spread the word about it. Kelly Young, the author, is doing another blog carnival, and I've been asked to participate! The topic is

What Would Rheumatoid Awareness Mean For You?

Well, for me, it would mean a great deal, even though I'm currently in remission. Assuming I never deal with the effects of the disease again, I STILL want people to know about rheumatoid disease. For many reasons! It's one of those "invisible illnesses" that people should really understand more. There are so many weird characteristics to the way this disease manifests itself and takes over the body. I've had to learn a lot about it, and I'm still learning as much as I can. It's a disease that's so hard to diagnose, it's often misunderstood - even by medical professionals, and it's not easily spotted in the general public, so more awareness would mean more understanding and less judging.

So, what would it really mean to me? It would mean:

• not feeling embarrassed about how I get on and off the floor of my son's Mommy & Me program, not feeling self-conscious about how I can't participate in toddler activities the same way other parents can
• having people shake my hand in a more comfortable way
• less stares when I'm having a knee flare and walk with a limp
• I wouldn't have to explain the disease, and people would stop trying to come up with my treatment plan based on the commercials they've recently seen... no one does that for cancer, right? You wouldn't just say to someone who just told you she has cancer, "Well, I heard if you eat more broccoli, it will get better," or "Try doing more cardio." I'm not saying that rheumatoid disease is the same as cancer; I'm merely saying that it is a disease, and one that needs to be treated as such - and not just like we would treat a headache or a sprained ankle.
• I'd get more empathy (not pity) when I'm feeling depressed and frustrated because my body has betrayed me
• more money for researching to both understand and to find a cure for this awful (and sometimes fatal) disease
• my friends and family would understand that "pushing past the pain" isn't helpful on a physical level (flared joints should be rested not pushed), and certainly it would help emotionally
• people wouldn't think I was just being lazy or using my disease as an excuse
• my doctors would know which drugs are safe for me, how meds can be used safely before or during future pregnancies, and that I'm not "too young to have this disease" (yes, I was actually told this by one of my doctors)
• my doctors would understand that this is an auto-immune disease that can cause my body to react and inflame in various, weird ways - not just in an "arthritic" way... for example, a skin reaction to an allergen is over-the-top for me (like looking like a burn victim after the anaesthesiologist used tape I'm allergic to for my epidural at my last C-section), or a drug reaction causes mouth sores or itchy elbows or any other number of uncharacteristic reactions anywhere in the body because my body is literally attacking itself or having an inflammatory reaction. I sometimes forget this myself and have to remember not every ailment is a new problem but that it may stem from the rheumatoid disease.
• people wouldn't think I have a low threshold for pain or that I was being weak
• people would understand that I'm not able to play with my two boys the way I have always dreamed of and so desperately want to - crawling on the floor with them, running and chasing them around the house, teaching them how to catch or throw or bowl or swing a bat, throwing them in the air or swinging them around.... and they'd understand just how sad and angry this makes me to be robbed of the rough and tumble play I want to experience with my young sons
• my friends and family would understand the constant fear I have of this disease rearing its ugly head yet again after a year of not having the pain, that they'd understand how careful I am with my body to not injure it or tempt fate to have remission suddenly end
• so many of my friends with Rheumatoid Disease would be better understood  - and quite honestly, that many others with "invisible illness" like MS, Crohn's, Fibromyalgia, and Asthma would also be better understood

In one word, awareness would mean "understanding." It's quite simple. I'm hoping that this second Rheumatoid Awareness Day spreads even more understanding and empathy for anyone suffering from or coping with the effects and (in my case) threats - both mental and physical - of Rheumatoid Disease. Please take a few minutes this Groundhog Day to read through some of the blog carnival!

RSV

This past Wednesday, Mr. Quinn woke up just fine. He ate, he played, and then it was time for his morning nap. He went down fine, but 30 minutes later, he woke up. I was frustrated because he normally takes a great morning nap of 1.5-2 hours, so 30 minutes was quite unusual. When I tried to get him to go back down, he fussed and refused to settle down. Again, frustrated, I left his room and let him cry for a few minutes, hoping he would go back to sleep on his own. After 10 minutes, he was still at it, and I didn't feel right about letting him cry much longer. So, I picked him up, rocked him, he fell back to sleep, but then when I put him down, he immediately woke up screaming again. I thought he felt warm, but maybe it was because of all his crying? I went ahead and took a temperature: 100.4. It's a fever, but it's right at the cusp of getting high enough to call the doctor. I was uncertain, and I really had no reason to take him in - no symptoms really. But, Banner had been sick, I had been unable to breathe well due to allergies for the week before, and Sam had a cough. So, it could be that he was getting something. Plus, the week before he had his 4-month shots, and maybe this was a delayed reaction. Or, maybe he was getting an ear infection after a cold over the holidays. I had no idea what was wrong, only that every time I've tried to put him down for a nap in the past week, he had been fighting me on it -when he used to go down so easily.

I tried to give Quinn some Tylenol, but he spit most of it out. Then, I tried to feed him, and he wouldn't take more than a couple ounces. Something was up, but I couldn't figure it out. He fell asleep on me a little bit later, and when he woke up, I took another temperature. This time, his fever had gone up to 101.3. I was getting concerned now. I offered his bottle again, and he refused. I held him for a bit longer, and he fell asleep yet again - he was so lethargic, and every time I put him down, he would scream, so I just did a lot of patient holding and rocking. I was thankful that Banner was at school that morning, so I could dedicate 100% of my attention to figuring out what was going on with Quinn.

When he woke up again, he felt so hot on me - like a furnace I kept thinking. So, I took another temperature. One thermometer said 102.1, but I just don't trust these digital thermometers, (I miss the old mercury ones!) so I took it with another thermometer just to be sure, and that one said 101.9. I knew I needed to have him seen by the doctor that afternoon since it was going up more.

He had a great nap in his crib leading up to his appointment. When I woke him to leave the house, I decided to take another temperature reading just to compare my thermometer to whatever the doctor's showed. He had a temp of 99.4. "They're going to think I'm crazy bringing this baby in for a 99 degree fever," I kept thinking. I felt like something was wrong, but I had no symptoms to report other than lethargy and decreased appetite. His fever had only lasted a few hours. What a pointless visit to the doctor....

or so I thought. When the nurse called Quinn back, she took his temperature with the little head wand thermometer. It read 98.8. Oh man, they're going to think I've got some kind of hypochondria or Munchausen syndrome bringing my kid in for no reason! But, after I described the morning, the nurse asked me if Quinn had a runny nose. I told her yes, but very mild - one that I only noticed a couple days ago. But, I figured it was nothing. She said she was going to run an RSV test just to be sure - it would take 15 minutes to get the result after swabbing Quinn's nasal passages. He did great for this quick test, and then it was time to get a pulse/ox reading. This took several unsuccessful tries on his fingers and his toes, and with several different monitors. The nurse could never get a reading that she liked - the numbers were too low. Too low to be correct because with the numbers she was getting, Quinn would have been unconscious, which thankfully was not the case. The doctor came in, tried to get a reading, and got a low but satisfactory reading. He then told me that "Unfortunately, Quinn has RSV."

I was worried immediately, and I wished that (just like I had worried about earlier) going to the doctor's office for no reason was the end result instead. I figured he had an ear infection at most. But, this virus that you can't really do anything for since it just has to run its course - that scared me in a baby so small. The doctor didn't help calm my fears when he told me that 50-60% of infants Quinn's age end up in the hospital. I was desperately hoping we were in the minority here! He also told me just how pitiful and weak this virus makes a baby feel. I hated that, earlier in the day, I had been frustrated with Quinn when really he was the one hurting and feeling frustrated. We talked about Banner having a "cold" and how that cold was most likely RSV but it just doesn't affect bigger kids the way it does infants. He told me Banner didn't need to be brought in unless he was complaining about being unable to breathe or if he complained of ear ache. He gave me some hints on how to keep Quinn comfortable: humidifier, saline drops in the nose then suctioning with the NoseFrida, Tylenol for high fevers, as well as how to look for labored breathing that would warrant an immediate office or hospital visit. He also wanted him seen in two days for a follow-up because he knew this was the very beginning of the virus. I actually asked him, "So this is probably the beginning," and he responded, "Yes, I know it is. It is going to get a lot worse."

Ugh! So, with that awesome news, we headed home to continue just laying low and coddling my little guy. Mom picked up Banner from school and let him nap at her house so Quinn could have some time to just chill at home with me. His nose got a little runnier throughout the day, and he continued to not eat well, but otherwise, he was a trooper who just wanted to be held. The next day, he woke up without fever but with a little cough. On Friday, he was pretty congested, with a much stuffier/runnier nose and a heftier cough. He had made it through both of the previous nights with a few wakings where I would just go in and rock him back to sleep - since sleeping upright was better for his congestion. I also fed him a 3 oz bottle each night just to keep him hydrated.

At his follow-up visit, he was smiling and sociable through feeling icky. The doctor said it looks like he's handling everything pretty well: "Yeah, he looks really sick!" he said as Quinn smiled up at him. But, he had lost 2 ounces of weight from not eating well, and unfortunately, he did have an ear infection in his right ear, so we started antibiotics that afternoon (which won't help the RSV at all, but hopefully, it will clear up the ear infection). Dr. B said we won't need any breathing treatments at this point, so that's great!

While there's nothing the doctor could do to alleviate the RSV symptoms, I was glad I had taken Quinn in to get checked out. I guess it's better to catch it earlier and not wonder what is going on, and it certainly helped me understand all the fussiness, the refusal to eat or sleep, and the needs my baby was having for just being held and cuddled when he truly felt awful. We're still hoping for the best as Quinn suffers through this frustrating illness with a great attitude. Hopefully, we are more than halfway through the 5-7 days of illness. Since leaving the doctor's office yesterday, Quinn has lost his voice but tries his best to "squeal" and "talk" to us - even though barely anything comes out. He's coughing a lot more, and he's pretty snotty but the fact that he wants to "talk" and try to play for bits at a time is encouraging. He's handling this really well, and so far our plan to sleep on the floor in his room if his breathing got too labored has not had to happen! We're just going in to soothe, hold, offer a snack, and get him back to sleep. Here's hoping everyone in this house starts to feel better soon! (Because this nurse mama can't take being the only well parent for much longer!) Thanks for your prayers!

4-Month Check-Up: Quinn

Today was Quinn's four-month well check. He did great! I hated that his appointment happened to fall exactly when he wanted to take a nap, but he was such a trooper and pushed past the tired. He fell asleep on me briefly while we waited for Dr. B and while Sam and I chatted with him about his routine, our concerns, and his development. Then, Quinn giggled through his entire check-up! As Dr. B checked his belly, Quinn squirmed with a bright grin from being so ticklish, and even when he checked his hips and joints, Quinn was just laughing away! I'm just so glad he was in good spirits and able to tolerate his tiredness while seemingly enjoying his exam! Of course, that all ended when he got four shots (and an oral vaccine). Poor baby cried with real tears and just screamed.

Developmentally, he is scoring between 4 and 5.5 months. Yay! I had some concerns going into this check-up because Quinn isn't rolling over very much. He has rolled belly to back about 3 times, but I haven't seen it again since last week, so I don't know that he really owns that skill yet. Dr. B says he does, he's just being lazy. I try not to compare, but this is just so opposite of Banner, so I worry. (Me? Worry? What?) Anyway, he's doing well in every way, and I'm just so happy to know there's nothing to be concerned about at this point. I'll keep working with him, and hopefully we'll see more action this week or next.

We are clear to start solid foods, but since Sam was at a late meeting, I decided to introduce rice cereal for "dinner" tomorrow night. I'm excited to see how Quinn does with it. I have a feeling my excitement will fade quickly, as it did when we first fed Banner rice cereal, when he just thrusts the mush out of his mouth with his tongue and refuses this new texture and taste.

Anyway, here are Quinn's stats at four-months-old:

• Weight: 15 pounds, 14 ounces (up from 12 pounds, 1.5 ounces at 2-months)...75th percentile
• Height: 26 inches (up from 22.5 inches at 2-months)... 85th percentile
• Head: 42 centimeters (up from 39.25 at 2-months)...50th percentile

Quinn was a pound and an ounce bigger than Banner at birth. Q was 7 lbs, 14 oz; B was 6 lbs, 13 oz. At Banner's 4-month check, he was 14 lbs, 13 oz, so they are still measuring a pound and an ounce apart - which Sam and I were just noting that they are growing at the same rate. And, as he should, Quinn has about doubled his birth weight at 4-months-old, so I feel good about his weight. I'm pretty sure the nurse mis-measured his height, but then again Banner was only 24 3/4 inches, so even if she only added a little, Quinn is still taller than Banner was. Their heads are measuring the same at 4-months - which is nice that they are only in the 50th percentile given their father's large cranium (to his own admission)! :) Of course I care about these stats, but more than anything I'm just glad we have a healthy, happy boy.

4-Month Newsletter: Quinn

Dear Quinn,
Today, you are 4-months old. I say it all the time, but really I'm in disbelief. It's already time to start thinking about feeding you "solids" (rice cereal really), to bring out the Jumperoo, make room for the Exersaucer, expect you to drop your mid-night "snack," and await more and more milestones! This month has been a little rough - you had your second cold, are much more alert (which can be frustrating when you feel more awake at the end of a sleep cycle, which means Daddy and I are soothing you and re-pacying you many times a night), and you are making your presence known (by crying for attention and wanting more fun things to do). But, this is when the fun really starts, as we are seeing more and more of your sweet personality. Let me tell you about it!

-You are squealing and "talking" up a storm! You even do it in the middle of the night. I'm sometimes afraid that you will wake your big brother with your loud cooing and squeals at 4am!

-You're experimenting with your tongue a lot: clicking, sticking it out, sucking on it.

-You are a big boy! We don't have any official measurements yet (we will next week at your 4-month check-up), but you have outgrown most of your 3-month outfits, and even 3-6 month clothing is getting snug. I, personally, am much more comfortable dressing you in 6-month stuff because YOU look more comfortable. This works out well since Banner was wearing 6-month clothing during these months, so the seasons work out pretty nicely that you can wear his warm 6-month outfits even at only 4-months old.

-You are trying to sit up by leaning forward from a laying position...getting quite the ab workout!

-You LOVE your hands. You hold them together, suck and chew on them, and grab all the time.

-I've enjoyed watching you play with your toys more - as you grab and swat at them now. You are also bearing weight on your legs, so I can hold you in a standing position and you can really see the world around you more.

-You're more easily predictable - grunting when you poop, gurgling right before you spit up, and getting pretty fussy when you're tired. You want to be entertained, often getting bored if we leave your side for a minute. And, while you don't have a set schedule yet - your routine is very cyclical. Wake/eat/play/sleep, that's what you do about three times a day before bed. You stay up for about an hour and a half to two hours tops - unless it's way too close to your bedtime for another nap, and then I have to do everything in my power to keep you calm and awake for over two hours (you made it 3 hours once or twice this month)! You wake up anywhere between 6:30-7:30 and take about 5.5-6 ounces. You are getting much slower at eating - not sure why. What used to take you 15-20 minutes is now taking about 30-35 minutes. I'm not sure if you are just not hungry, too interested in other things, bored with your food? I plan to talk to Dr. B about it next week. Anyway, you repeat this cycle of wake/eat/play/sleep until we start bath around 6:30 and have another bottle (usually a fourth or fifth bottle of the day) at 7:00ish. Then, when you wake up at night - anytime between 1:30-5:00 (but typically around 3:30), we give you only 3 ounces.

-You still LOVE your bath time, and I do too. You could really stay in the tub for a long time, but I often have to hurry to feed you before you fall asleep, so bath can get rushed sometimes. I'm hoping as you can stay awake a little longer that we can enjoy this time even more.

-You rolled belly-to-back on New Year's Day. You did it twice while Banner was taking a nap, and Daddy and I were watching you at Grandma & Papa's house (after Aunt Jacque & Uncle Freddy's brunch). You were 16 weeks and 2 days old. And, you've done it again in your crib since then, but that's all we've seen so far. I'm working with you every day to make this easier for you, but you just love your belly so much that you relax and think it's time for bed - not time to work out and play - often putting your arms by your sides instead of up near your head to help you push over.

-Overall, you are a very happy baby. Usually cooing and smiling, laughing, and engaging. You know your name, too - often looking to see who called it with a big grin.

This month, you had lots of time with family (New Year's Eve and Day, Christmas, Candlelight, a shower for Uncle Erick & Aunt Kira, brunch with friends, and cousin Brian was in town), and you had a few outings with Banner while he was on winter break. You were a trooper, too! I'm so glad you can still fall asleep on me in the sling I wear; that definitely makes it easier on everyone! I'm trying my best to get you on a schedule and make sure you are getting the necessary rest in your own crib - while also balancing Banner's need to get out of the house. This is not an easy task, so I really appreciate you being able to go-with-the-flow!

My favorite part of our day is definitely holding you right before bed. I look forward to this moment each night - still trying to memorize your body in my arms, as each evening brings you one day older and one day farther from my newborn. You're still changing a great deal - "losing" your hair (really, your head is just getting bigger so the hair you DO have is spreading out!), getting more smiley and giggly, growing taller, and discovering so many things around you. You and I have a special bond - I can see how much you love me in your eyes and in your smile. And, sweet boy, I sure hope you know how much I so love you! You are one well-liked and well-loved little man, and I am so eager to see what this month brings. I am ready for this exciting ride of new things with you - seeing how you like eating (something other than formula!), seeing you roll around, hearing more laughs and watching what entertains you. But, more than anything, I can't wait to love you each day - again and again.

Happy 4 Months, Quinn, my love!
I love you!
Love,
Mommy

This was how Daddy wanted you to ring in the New Year - see next picture...

...because Daddy had a thing for facial hair as 2013 became 2014.

Just us

My handsome little guy!

All Too Fast

It's a new year. And that means I've been feeling a bit thought-ful and nostalgic. As Quinn gets ready to turn four-months-old, and as Banner enters another semester of school, I am just feeling like this ride is going way too fast. It's a ride I often complain about, feel frustrated with, or get overwhelmed with in a lot of ways a lot of the time - but New Year's Eve I had an awakening like never before. Sam and I had the house to ourselves since Mom took the boys for the night. We made a very last-minute decision to pack them up and let them have some time with Grandma and Papa while we enjoyed a movie and some alone time to ring in the new year. The boys haven't been feeling well - colds or allergies, not sure which. But, they weren't 100%, and I wasn't 100% sure I wanted to leave them for the night, but I decided there's really nothing different about Grandma's house, and she was more than capable (more than I am?) of taking great care of them. So, we took Mom up on her offer and headed over there with all their meds, VapoRub, humidifier, aspirator, and even a rectal thermometer (just in case). Once I had said my goodbyes and Sam and I were enjoying some time together, I started to relax and try not to feel guilty about leaving the boys for the night.

When we got home, I found the typical toys strewn about the house. A play tea kettle in my bathroom, a Hot Wheels in the hallway, crayons and stickers on the kitchen floor, and Legos sprinkling the den and play room surrounded by train tracks and trucks of all kinds. These are all normal sights around my house, and on most days, I am annoyed and frustrated by the never-ending clutter of random toys, books, burp rags, clothes, and shoes throughout every room of this house. I swear I clean my house. You wouldn't know it by looking at it, but I can sweep, mop, vacuum, put away laundry, clean mirrors, etc... and 10 minutes later (literally!), it looks like nothing has been done in months. The constant "un-doing" of my cleaning and picking up is enough to send me over the edge at any minute, and sometimes I feel like I'm on the verge of a mental breakdown or anxiety attack - seriously. But, on this particular evening, as 2013 became 2014, I had a different feeling. Nostalgia.

There was a sense of sadness and missing. It was a comfort to see my boys' things when they weren't here. And all of a sudden, I had a peek into my future. I could imagine my life 18 years from now, Banner and Quinn gone from this house - off on their own in the big world - and Sam and I here all alone, basically "done" raising our little boys (as if you could ever be "done"?), and I felt so, so sad. These messy days are going to be a distant memory all too quickly, and I'll miss the random skillet in the bathroom. I will miss seeing one itty-bitty shoe next to the refrigerator and its match three rooms away near the toilet. The Play Doh bits that are a constant headache to me now . . . I will long for them in 16 years when Banner is too big and too mature and too cool for making me a pizza of various colors or of slithering a green snake towards me to eat me all up. I couldn't help but long for these days to last longer - to memorize every toy they play with, every little funny thing they say - so when they are big teenagers or even grown men with kids of their own, I will see the toddler I love so much still inside them, still peeking out at me saying, "Mommy, I'm still here!"

Last week, we stopped using the swaddle blanket for Quinn. He's going up a size in diapers, and he's ready for the next size of clothing, too. I'm packing up newborn and 3-month clothes... wondering if I'll see these clothes on another one of my babies. And then it hits me, it doesn't matter if it's another baby or not - Quinn will never wear these again. Banner will never wear these again. There's no turning back. And, as they grow up, I'm learning to let go and grow up with them. There's always a change happening, a movement towards independence and maturity: moving out of Mommy & Daddy's bedroom as newborns, not needing a swaddle, weaning off the bottle, outgrowing the crib, saying goodbye to pacifiers. (Side note: Banner is at the point where we really need to take away his pacis he uses for night and nap... but I think I'M more anxious about it than he is - and not because he may not sleep as well, but because I love those pacifiers FOR him! They are his loveys, his friends, his comfort when I'm not there. How can I take those away? What do I do when I'M the one not ready?) And these changes happen so fast these first few years.

I haven't quite shaken this sad feeling that they're growing up and getting big all too fast. Quinn isn't even 4 months yet, and I miss him. Part of me wants to scream, "What is wrong with you!? He's still so little!" But the other part of me knows that I'm right. I know how fleeting these days are. And, while I can still see Banner at 4-months-old in my head, I don't remember the feel of his body in my arms, and I would do anything to try to feel his little newborn skin again, to rock him to sleep at 2, 3, 4, months old. I try to savor these days with Quinn and cry when I fear I won't remember it. I try to hide my tears from Banner when I tuck him in at night and his beautiful, angel face tells me he loves me and he kisses me. I hear their sweet lullabies playing at night, and I want to remember how I feel as they are lulled to sleep, their little bodies warm in their beds. I'm grateful for my writing and my blogging to keep it all documented in the moment - but I want more than that - I want it to last, to be felt again and again - and that just can't happen.

So, I'm trying to be in the moment more. And that has become my New Year's resolution... even though I'm not sure I have ever really made one before. I am well aware that these days will go faster than I can imagine, and I will never get them back, no matter how much I try later to remember and recall. I get one chance with each baby of mine. I get one day with them at this age. And, every day, they are older. There are only so many days with them before they are gone from this house, before I am gone from this world. I can't make it last any longer, but I can get the most out of it. . . try to enjoy the ride, even if it is happening all too fast.