When Acute Becomes Chronic

I've been thinking a lot lately about self. As in, two years later and I'm still not myself. In a grand sense, I'm so very grateful. To remain unchanged after becoming a mother is unfathomable. I don't necessarily miss the self who was a little more "put together" with plucked eyebrows and painted toenails and daily quiet time (okay, I miss the daily quiet time). But let's be honest, I've always been pretty low-maintenance when it comes to exterior perks and that's okay.

I haven't been the same since I had my son. I love him infinitely. He makes me smile like nobody's business-- far more than anything else makes me smile these days. But it's not fair or possible to draw my light from him all day every day. I cry to the Lord, and He hears me-- He's molding my heart to be more like His-- but He's not healing me the way I want. Physically, emotionally, mentally, I'm not myself anymore. It doesn't feel fair to my son, to my husband, to my family and friends, to me... for me to be... not me.

Even my future self, the one I see at the other end of this chain of lights, the one I draw toward me one or two bulbs at a time, on a good day, remains ever far away.

I miss the part of me that had inner vibrance. Some spontaneous, uninitiated joie de vivre, at least sometimes. I get glimpses of her, when I'm clear-minded enough to hold a thoughtful conversation. When I'm spilling over with words that need to find a page. When I have energy to move my body.

I wouldn't say I'm depressed. My counselor concurs, as does my paradoxical response to numerous anti-depressants and anti-anxiolytics. Dare I say? I'm sick. I don't look nearly as sick as I did a year ago, and my level of pain is decreased by at least 80% on a good day compared to this time last year. Once or twice a month, I can muster up a "real" workout and enjoy the adrenaline rush immensely, even though I pay for it for the next 5-7 days. I can have a good "normal" weekend from time to time, but it's always followed by a truly horrible week.

I can't help but feel like I've fallen into the doughnut hole. Of course, there's the political one, where health insurance (which I'm so very grateful to have) only skims the surface when the doctors who are willing to step out on a limb charge by the hour, and don't file with insurance. (Because when you're sick and overwhelmed, it's no big deal to collect paperwork and navigate insurance bureaucracy, right?!)

But this is the doughnut hole where I fear acute becomes chronic. The one where you sense very few people still take you seriously. The one where you doubt yourself, even as your gut tells you, there's more out there! This cannot and will not be how you feel forever!

How long do you have to be a shell of yourself to call it chronic fatigue? I know it has to be long enough and low enough to bring you to a point where you're willing to admit this is a real thing, even though it terrifies you to your Just Do It core.

As a healthcare provider, do I respect my clients enough when they bare their "please tell me I'm not crazy" secrets? As a patient, is it worth staying up late to write a narrative of the last two years for a doctor who may or may not want to read it?

At what point is it optimism to get my hopes up that maybe this next doctor knows that how I feel is real, and at what point is it foolishness?

At what point is is helpful to cut out this food or add that supplement, and at what point does the trying and failing do more harm than good? The kind of harm that makes you feel like this is all your fault even though surely you just drew the short straw. (And how long does it take these dang expensive vitamins to work, anyway?!)

At what point, I wonder. At what point does acute become chronic?



See also: these fascinating essays on women and pain.

See also: the genius spoon theory.

Which Camp are You In?

There has been a lot written on Mommy Wars. I haven't spent a lot of time or energy delving into the subject because honestly, being a mom has flat-out humbled me. I was a really good mom before I became a mom, right?

My doula was on the local NPR station recently discussing vaccines. (A doula who is PRO-vaccine? Right up my alley!) She has a background in microbiology but her current career is spent helping women navigate a healthy pregnancy and delivery, often in the most low-intervention way possible.

When discussing vaccines, she mentioned in passing that some "anti-vaxxers" haven't actually investigated the subject, but feel pressure (internally or externally) to conform to a mode of parenting, and declining vaccination is a way to fit into the "natural childbirth/attachment parenting" camp.

And then I realized why I struggle to discuss parenting choices with people. They always seem to say something that doesn't sit right with me (and vice versa, I'm sure). Note: these things are not usually something I passionately disagree with, but something that I know in my gut isn't a good choice for my family.

Yes to natural childbirth, and yes to childhood vaccinations.

Yes to the chiropractor, and yes to Prilosec for baby's reflux.

No to bed-sharing, and no to cry-it-out methods.

Yes to breastfeeding, and yes to introducing solids at 6 months.

Yes to cloth diapers, and yes to disposable wipes.

Yes I work 12+ hours a week, and yes I stay home with my baby Monday through Friday.

I'm absolutely not having a pity party. I know there are other moms like me out there. If anything, having a foot in both "worlds" helps me empathize with both sides. But it also confuses me. So much information. So many opinions. So much more to motherhood than I thought.

I passed!

I can't quite express the relief and joy I felt when, after 2 hours and 175 questions, the secretary at the testing center handed me a slip of paper saying I PASSED the RNC exam! People keep saying, "Congrats, I knew you would!" But there was a minute there, after I'd closed the test and before my paper printed out, when I felt like crying and throwing up and I was just terrified I'd have to tell everyone I didn't pass. Thankfully, that only lasted a moment due to instant grading!

How freaked out do I look in the pre-test picture?!

I am now an RNC-NIC.

Besides the obvious...

 ... here's what else I learned:

-The Cincinnati Children's Heart Hospital's website is a great way to learn the basics of congenital heart disease before learning the details from a textbook.

-Do not take an RNC review by Terese Verklan. It was a huge waste of money and I only passed my exam through my own hard work, reading 75% of the Core Curriculum textbook, and reviewing with a co-worker's notebook from Linda Juretsche's review class.

-Punnett Squares are not nearly as scary as I thought they were.

-I/T ratios and Aboslute Neutrophil Counts are actually really simple equations.

-As always, I love medical terminology. I've added plenty more fun words to my vocabulary! (Just be warned that even if it's a funny word, the definition may not be. Google search at your own risk):

anastomosis
orchipexy
insufflation
epistaxis
syncope
glosspotosis

-I am slowly re-gaining confidence in myself and this is a huge step toward realizing that I can do anything I set my mind to.

Flashcard review the night before the test

 -Finally, I am more convinced than ever that a healthy baby is truly a miracle!

Long Overdue

1. I got a long-overdue haircut (no pun intended) on Friday. I last got my hair cut at a cheap salon in May or June and literally came home in tears because I felt like I was donning a shredded, overgrown mullet. I went back and had the girl try to fix it for free, but it didn't really do any good. So I've been trying to grow it out and finally went to a new person at a new salon (loved her) to fix it. She cut about an inch off and when I go back in 6-8 weeks, we can finally even out all the layers left over from my attempt at saving money on a haircut.

2. Winter weather is here- a cold November fog has descended upon Kansas City and it rained most of Friday and Saturday. I knew 70 degrees and sunshine were too good to be true! Then again, it's starting to actually feel like Thanksgiving is approaching now. And *gulp* my half marathon.

3. New shoes! They say running shoes are good for 300-500 miles, and mine only have about 350-400 on them, but I'm having to lace them tighter and tighter, and I was getting weird leg/foot pains that I'd never felt before, so I figured it was time. I'm excited because I actually earned these shoes by running in my old ones!

Our insurance policy allows you to collect "points" for healthy activities, such as attending their annual health screening, getting a physical each year, visiting the dentist, and working out. With these points you can then buy gift cards to a bunch of different vendors. I diligently tracked every workout since January and cashed in on some points early. I bought an Amazon gift card and ordered my shoes online. This sounds risky, but I've been fitted in two different running shoe stores in two different states, and ended up with Adidas Supernovas both times. So I rolled with it and ordered the same shoe in the same size. Hopefully I'll break them in before the race.

4. Church. I don't even want to tell you how bad we've been about going to church since moving. Yes, one of both of us have been working a lot of Sundays, but we finally went this morning and decided to make it a priority. While it's no Christ Chapel (I know, I know, get over it already) I do really like Redeemer Fellowship by my hospital.

5. A real dinner at home. We now have a computer-free dining room table, but have yet to sit down to a real dinner at it. I fixed that tonight. Recipe to come!

'Roid Rave

I took 2 days off from exercise, stretched a lot, tried to eat more protein, and still had a rough run today. Don't get me wrong, my knees felt a lot better and my quads are getting there, but I was still so slow.  Yet I chalked the run up as a success because I finished, and went about my day. I kept repeating a line from the Desiderata in my head: "If you compare yourself with others, you may become vain and bitter. For always there will be greater and lesser persons than yourself." My running is my running. My training plan is my training plan. Keep chugging away, and it'll be okay. (I'm glad we're training "together," Emily G., but your workouts completely intimidate me and here I am getting slower instead of faster!)

But as I ran errands, I noticed that my throat was still pretty constricted. I have asthma, so it takes time to breathe normally after a run- but never several hours. I went up to the hospital to get my Tuesday allergy shot and went ahead and told the nurse there. I had noticed my asthma getting worse in Chicago, but when I still felt cruddy after we arrived back in KC, I just assumed I was fighting a cold this past week. DUH, I should know better!

I'm very compliant with my asthma meds and I've been stable for a year now. I almost never even need my "rescue" inhaler, let alone further treatment. But when my family was in Egypt a few years ago, the pollution was so bad that I spent New Year's Eve on a Nile Cruise hacking up a lung. I think it took 2 1/2 weeks of Prednisone to finally breathe normally after that. Chicago wasn't nearly that bad, but it was still noticeably harder to breathe when we were walking through downtown at rush hour.

Anyway, I always have to exhale into a peak flow meter before my allergy shot. I usually measure about 520 but today it was only 410 (78% of my "norm"). Most doctors wait until peak flow deteriorates to 70% or below to treat, but I told them that when I wait until the symptoms reach my chest and I start coughing a lot, it takes several courses of steroids to fix it. Thankfully, they took my word for it and I obtained my first Prednisone prescription of 2010. I think it's been about a year since I took the last round, which is impressive for me.

I have a love-hate relationship with 'roids (as Ross loves to call them). They shoot my blood sugar sky-high and they weaken my bones (I've taken so much Prednisone in the last decade that I have osteopenia). But oh, I love being about to breathe again. I sleep better, run better, heck even talk better when the inflammation goes down. I'm starting to get hoarse and cough more tonight. I'm SO glad I took my first tablet this afternoon. Hopefully I'll avoid the worst of the attack.

Today I'm so thankful that I have medical care, and that my problems are easy enough to treat with an old (and therefore inexpensive) medication. And I'm especially grateful that most of the time, I can breathe so well I forget I have asthma!

The Best National Neonatal Nurses Day

I took care of Johanna's little marshmallow at work today. I knew it was going to be a busy day, but when that sweet baby opened her big eyes to look at me after I changed her diaper and started her feeding, I knew I couldn't walk away.  I got some warm blankets and sat down in her dark room to hold miss marshmallow for 20 minutes. She was so happy!  She was looking around, looking at me, sucking her thumb, and trying to show me what a big girl she was.

After a few minutes, she got sleepy and snuggled in. I took a deep breath to wake myself up and enjoy this moment of peace, and then I felt the baby's tummy pooch out as SHE took a deep breath. A few minutes later, I sighed again, and the baby took another big breath and let it all out.  IT WAS SO SWEET!  Best part of my day week, hands down. I did this several more times while holding her, and she responded with her own deep breath every time. I think both of us got a lot off our shoulders :o)

I know I complain about work a lot, but I do love the part of my job that allows me to interact with tiny patients every day. They are so sweet and so strong and I have so much love to give them! I hope they know over the beeping monitors, hissing breathing machines, constant hum of voices, and occasional bright lights, that someone out there loves them. It's an honor to help them grow and to spend precious moments like this with them.

Sometimes "my" babies are so beautiful it makes me want to cry.

8 Vials of Blood

Freshman year of college, I went to a campus blood drive to donate and ended up signing up to be a bone marrow donor. I didn't really give it a second thought after that. But last week, I had several urgent messages from a woman in Ft. Worth wanting to know if I was still interested in donating. Apparently I'm a possible match for a 20 year old with leukemia.

Tomorrow morning, I go to the lab to get 100ml of blood drawn. I know that's not a lot compared to donating blood, which I've also done, but it sounds like a lot right now. After all, we give 8ml blood transfusions to our smallest babies in the NICU! 100 is a lot in our tiny world.

I'm also nervous because they will be scrutinizing every possible number on my lab results (and, of course, genetic markers) to see if I'm a good match.  More than wanting all my numbers to be perfect, I want to be good enough to help!

Please pray that this keeps moving forward and I can help someone during such a desperate time. I know I'm not even a definite match, but I already feel really good about signing up to be a donor. I highly recommend it! It's humbling to know that I could literally save someone's life with generosity.

Work in Progress

Work often overwhelms me these days. I used to be able to work 4 days in a row (sometimes even 5 and, about once every 6 months, 6 days in a row). At the ripe old age of 25, sometimes I wonder if I'm already burnt out. Even worse, sometimes after working 3 days in a row, I'm afraid that as tired and as frazzled as I may be, I don't even know the meaning of "burnt out" yet.

I remember in grade school we had a ceremony for a 2nd grade teacher who had been working at the school for 25 years. I remember thinking, "that's way longer than I've even been alive!" That still blows my mind. So much happens in the first 25 years of your life... what happens the next 25 years? Am I destined to be doing the same thing day in and day out 25 years down the road? Dear God, I hope not. 25 years in the same place STILL blows my mind. 25 years ago, I was just a baby!

I've been out of school for over 2.5 years. Work is no longer a fun novelty, it's work.

Sometimes I think it'd be nice to do something that doesn't involve interacting with others. (I know, I'm antisocial enough as it is). But then I see aunts and grandmas stepping in to help an overwhelmed dad and a baby who has lost her mom.

I see strong, patient mothers who are dealing with the tragedy of not having a normal pregnancy, delivery, or newborn baby, yet they sit with their child every day and know more about the baby than the doctors or nurses ever will.

I get parents thanking me so much for taking care of their baby and requesting that I take care of their child every day I'm here.

And I'm thankful I have a job that allows me to witness the best (and worst) sides of the human condition. I get invited to baby showers when a long-term kiddo is getting close to going home. I frequently lend an ear to overwhelmed parents (and realize my life isn't so bad after all).

It doesn't happen every day, but sometimes when I'm not running around like crazy, catching up on charting, or trying to problem-solve a patient's latest problem, I get to sit down and snuggle with a baby. I get to feed someone their very first bottle. I get to carry them outside their rooms when they become "portable" and can remain stable without oxygen. I hear babies cry for the first time, I see them smile accidentally, and I get to watch them find their hands and reach for my face when I talk to them.

I do love the perks of my job, and usually when I'm bragging about a baby's latest accomplishment or cute moment, Ross tells me that this is the perfect job for me. As for now, I'm exhausted and looking forward to another few days off.  Texas, here I come!

Crazy Days

I suddenly have less time to blog now that I'm on day shift. Working 6:45am-7:30pm leaves you worn out in a whole different way. Don't get me wrong, I'm SO glad to be on day shift! (Even though I will always have a soft spot for my night shift co-workers and they will always have my undying respect.) But day shift is so much busier. "More bang for less buck," as my friend Kate says.
My feet hurt and my legs are so stiff. I worked Friday and Saturday and Saturday was especially JPS-worthy crazy. When I got up this morning, my feet started to hurt while I was standing in the kitchen making breakfast! And I get to do it all again tomorrow. However, I am very glad that I started my nursing career in such a busy unit. I still miss it with all my heart.
I'm so UNSURE of everything here. It REALLY doesn't help that my current NICU has been divided since I got here. There's one unit on the first floor and the main unit is on the 5th floor. We get shuffled between them just enough that I've been here 7 months and I still can't find supplies when I really need them!
I miss going to deliveries. I miss having designated "admit" nurses and I hate the chaos when we might be getting a baby and no one seems to know who is even going to take the admission at first. I remember feeling so lucky that in my entire first year and a half of nursing, there was never a day I DREADED going to work. I LOVED my job. I am still undecided here. Don't get me wrong, I love my patients (most of them, anyway) but there are definitely days that the thought of going in to work really weighs me down.
Ross hates it when I complain about missing Ft. Worth, but I need to get this out. I miss JPS. Yes, the county hospital with mostly Spanish-speaking clientele and homeless people watching TV in the ER waiting room when the weather was bad. I miss my little Hispanic babies who were always born with a full head of hair. I miss having a Neonatologist at the hospital 24/7.

That's Dr. Prieto on the right... my hero! I would move back to Fort Worth JUST to follow her around and learn from her. She always talked to the nurses, got their opinions, and actually dialogued with us regarding the patient's status. The best day of my nursing career was when we were talking about a baby's blood gas and I said something she hadn't thought of and she complimented me!

I definitely miss doctors who took the time to teach the nurses in the unit! (Here they're too busy teaching the residents, most of whom will never step foot in a NICU again after their rotation.) I miss being at the bedside when the doctors spoke to the infant's parents in rapid-fire native tongue. It's been 7 months and my Spanish is all but gone. I hate that.

I really hope that studying for my RNC brings back some confidence, because right now I'm no longer one of the lucky few who can say that I do what makes me happy and I get paid for it!
*A good leader inspires people to have confidence in the leader, a great leader inspires people to have confidence in themselves* -Groucho Marx

"An Epidemic of Fear"

I was just reading my nerdy husband's Wired magazine and this article caught my eye: http://www.wired.com/magazine/2009/10/ff_waronscience

The article is well-written and well-researched. Any issue is always better publicized when there are groups adamant about both sides, and the Jenny-McCarthy-vaccine-autism group is quite vocal, if slightly misinformed. Their questions and accusations can prompt vaccine makers to re-evaluate the safety of their product and hopefully create vaccines with fewer and safer preservatives, etc.

However, the un-vaccinated children out there are only protected by the children who are vaccinated. We seem to think that some diseases have just "gone away" because this is America and we are not a third-world nation. But in fact, "In certain parts of the U.S., vaccination rates have dropped so low that occurrences of some children's diseases are approaching pre-vaccine levels for he first time ever." You and I may not have encountered polio face-to-face, but if this anti-vaccine trend continues, our own children may see the same disfiguring diseases that our grandparents did.

You might think that when kids start to die from previously "rare" diseases, parents would jump on the vaccine bandwagon again. Not so! There have been recent, fatal cases of meningitis in un-vaccinated children in Pennsylvania and Minnesota and parents continue to opt-out of routine childhood vaccinations. We're not talking about seasonal flu shots here.

If your newborn gets pertussis (whooping cough) there is a 1% chance that the baby will die of pulmonary hypertension or other complications. That may seem like small odds, until it's your baby coughing so hard that he or she turns blue. But those odds are unnecessary when no study has linked DTaP (the diphtheria, tetanus, and pertussis vaccine) to death in children.

I'll let you read the whole article to get a better idea of what I'm so clumsily and inadequately summarizing here. But I will leave you with this quote: "Nobody in the pro-vaccine camp [myself included] asserts that vaccines are risk-free, but the risks are minute in comparison to the alternative."

Donning a nursing hat in the NICU last Halloween :-)

P.S. I have asthma and a history or bizarre illnesses that tend to occur in elderly populations (shingles, C. diff, to name a few). I absolutely get the flu shot every year, I got the DTaP vaccine last year when Pertussis was going around the JPS ER, and I plan to get the H1N1 vaccine in the next few weeks since I work with premature infants with compromised immune systems. And look, Mom, no autism!

*Disclaimer: Autism is a very serious spectrum of mental illness and in no way do I want to discredit mothers who are concerned about the well-being of their children. However, I do not personally believe that vaccinations cause autism. Also, if you're allergic to eggs or any other ingredient in a vaccine, of course you should say "no"! But in such cases, you would ideally gain some protection from certain diseases by virtue of your vaccinated peers.