I have got to stop taking prednisone at 11 pm

4:15 and I'm pretty sure I'm up for the day. I'd go for a run if I hadn't been hooked up to an iv 24 hours ago. Ok, let's be real. I'm also afraid of the dark and am relatively certain that there is a dude in a windowless van trolling my incredibly safe neighborhood for moderately chubby runners with friendly faces AS WE SPEAK. So no, there will be no running. Instead, I will regale you with tales of my adventurous life.

Took my prednisone at 11 pm last night, so the insomnia hit me about 20 minutes ago. Then the kids hacked and coughed all freaking night long. I am trying to let Andrew catch up on sleep since he had the hacking children all week with absolutely no rest. At first I thought that might be an exaggeration, but holy Toledo has it been a hellish night. It's 4:30 now and I'm just going to give up for the rest of it. Claire has been laying on my femoral artery for upwards of an hour, and every time she coughs I'm certain she's going to throw up. My body temperature is all screwy, so every time she gets comfortable I start to sweat like crazy. I am making some wild plans to combine mucinex and nebulizers for the rest of the day and see if I can't straighten these nasty kids out.

I was able to leave the hospital last night and am feeling okay. I started the remicade on Thursday and now I'm really in a holding pattern. Where drugs go, they've done absolutely all they can do for now. They were able to bring my iron levels back to "acceptably low," from "are you sure you don't feel like you're going to die?" and I can expect those to continue to climb over the next few weeks. My red cells and white cells looked good as of yesterday, and I already seem to be tolerating the remicade very well for my first infusion. There will be side effects to iron out over the next few months, but I should be able to resume daily life fairly quickly. The biggest concern from here will be taking steps to live comfortably with a suppressed immune system. Some people are fine for years and never really get sick. Others tend to be very susceptible to any germ that crosses their path. We won't really know how that will go until we try. I'm focusing on constant hand-washing and keeping the house majorly sanitized, and starting to work with the kids a little more on keeping their hands clean and reasonably avoiding germs. I don't want to turn them into a bunch of little germ freaks, but it may also spell the difference between a smoothly-run house and mommy landing herself in the hospital with bacterial pneumonia. In addition to the common-sense stuff, I did some research last night and found some finer points that we'll have to keep in mind for special occasions, like not receiving live vaccines and bring extra careful around animals and small kids. It's incredibly fascinating to me. Andrew calls the remicade "the gamma bomb." I'm very excited about my potential Hulk powers.

Let's see, you've been caught up on that excitement. I go back in two weeks for another round of remicade, and then four weeks after that for my final loading dose, and then the infusions will be every eight weeks after that. I did some preliminary research on the dollah side of it last night, and I'm praying that our insurance is good to us. Otherwise...we're all getting remicade for Christmas! At $10k per infusion, I'm thinking that after about a year of treatments my colon will be almost as valuable as Dolly Parton's...

...voice? Heh. Maybe more, since my colon works 9 to 5 AND 5 to 9...who's the boss now, Dolly?

Okay...anything else? Oh, let me just tell you how awesome our friends and family have been through all of this. We are so surrounded by so much love and support! The phone calls, cards, magazines, emails, surprise gifts in the mail, playdates for the kids, meals, goodies at the door, flowers, Amazon gift cards for books and diversions, spiritual bouquets, prayers, visits in the hospital, tiny gestures that are just so meaningful...I am absolutely shocked and humbled by the many ways the people we love have poured out so much support over the past few weeks. God is so good in the way He has provided for us. There is nothing that stirs my soul quite like finding out that people love me as much as I love them. I consider myself to be such a selfish, self-absorbed person, and I know that I deserve a smile at best, most of the time. To be showered with so much concern and love just breaks my heart a little bit. How many ways can I find to show how much I love the people who care so much? It just moves me beyond words. And now I'm crying. Can we go back to talking about Dolly?

My mama is here and I am loving that we still have a weekend together after she spent all week loving on my babies. They've never had a full Mimi experience without a million other things going on, and I know this week has been so special to them. If course, just like Grandma Cooke is synonymous with chocolate milk, Mimi has established herself as an endless font of apple juice, so we'll be on a strict detox next week. A small price to pay for a week of Mimi love!

It's 5 am! That means people everywhere are starting to wake, and someone will post something on Facebook within the hour. Huzzah!

I should go now. I have so much to catch up on. Words with friends, awkward family photos, Pinterest, instagram...

The miracle drug

...there she is...right next to Carrie Bradshaw. Hello, Remicade. I'm Laura. Be nice to me, okay?

The miracle drug

...there she is...right next to Carrie Bradshaw. Hello, Remicade. I'm Laura. Be nice to me, okay?

Waking up with my boys.

Week Four of the Unfair Flare

So every morning between 4 & 6, my belly wakes me up. I'm cool with that, because many days I can get some of the chaos out of the way before the kids are up. I start my day with zofran for nausea, bentyl for spasms, tylenol for pain, prednisone for swelling. It's like the most painful food poisoning ever, every morning. Then I take a bath. The bath is nice because I can collect my thoughts, pull myself together, let my muscles settle down and just sort of ease into the day. The mornings where I'm jolted awake by kids and forced to make breakfast in all that pain are the bad ones.

It's funny how isolating this can be. It's incredibly eye-opening. I'll think to myself, "poor me...so alone...so tired...nobody can see my days, and nobody understands how hard this is." And then, when I come back to reality, I realize that my little journey is still a really damn good one, and there are so many people fighting invisible battles that are so much harder than this.

No, I'm not completely comfortable lately. But I have a large, warm home full of food and every material item I could possibly need. No, my head isn't in the most fantastic place lately, but I have the most amazing husband who would go to the ends of the earth for my health, safety, comfort and humor. No, it's not always easy taking care of five little ones in the middle of all of this, but I have FIVE amazing, adorable children who all grew inside me and greeted me with a healthy cry the moments of their birth. Yes, I'm suffering, but I suffer in total awareness that suffering is beautiful and can be used for so much good. Yes, I'm begging God for mercy and comfort, but He must be so happy to hear from me on a daily basis! There are moments when the prednisone doesn't agree with me and my blood sugar goes wild, sending the room spinning. I try to remember that it's a moment to have a cookie, pull a baby into my arms and snuggle on the couch. And then I have time to think about the time Andrew asked me to marry him in the rain, spinning my head into a lifetime of happiness.

I don't deny that this is hard, but it's a chance to be with my thoughts, to appreciate the comforts that I have and to thank God that He allows me to suffer instead of the precious people I love. A mama is so strong and resilient. There is truly no amount of physical pain a mother cannot bear when she has time to appreciate the relative health of her family. I'm happy to do it, every time I see them wrestle and giggle and climb dangerously. If someone has to do it, I'm glad it's me.

The ABC's of Sick Kids

A is for acetaminophen. Dosing regularly.

B is for blubbering. Lots of that happening here.

C is for cough, and caffeine, both of which I'll probably have tomorrow.

D is for Daddy, whom we are missing.

E is for eyes. Four goopy, nasty eyes.

F is for fever. Got those too.

G is for graham crackers. Not even those are working.

H is for howling. And humidifier.

I is for ibuprofen. Sigh.

J is for jeans. Mine are covered in snot.

K is for kiss. Can't help myself, even when they're slimy and germy.

L is for laughter. Very little laughter here today.

M is for mama. She's here...she's here...

N is for noise machine.

O is for otoscope. I wish I had one right now.

P is for pitiful.

Q is for quiet. Still...not...quiet.

R is for rest, of which I will be getting very little tonight.

S is for sleep. Ain't no rem cycles in this house...

T is for tired. Have I covered this yet?

U is for undone. Oh, it's all undone.

V is for vigil. Sitting vigil with my boys, rocking and rocking and rocking.

W is for whine. All of us.

X is for x-Ray, which what I hope to avoid by getting these sickies to the doctor in the am...

Y is for yawn. Happening now.

Z is for zzzZZZZZzzzzZzzzZZZZzzzzzZ

Tuesday

Tuesdays are always busy and a little stressful. For a homebody like me, Tuesdays stink. I get to see my friends, and I love that part. I'm never sorry I went out. But dealing with all the car seats and strollers and diapers bags and shoes makes me positively nauseous. Having to remember so many things just to get out the door is just exhausting. My mommy brain is bad right now, and it feels like I'm always forgetting something crucial. I am done borrowing books from the library. Can't remember to return them. Done scheduling anything for any day other that Tuesday or Friday. Can't remember appointments. Done cooking anything I don't know by heart. I WILL screw up anything new. Done tackling projects outside of the weekend. I'll get too sidetracked to do anything beyond making the initial mess. Done trying to go to a Mass that might fit our schedule better. Sundays at 11 means we can predictably get out the door. Done, done, done. My brain has melted into a little puddle that can't reasonably extend beyond changing diapers and wiping counters. I'm fine with that. I love what I do! But I have to be reasonable about my expectations and stick to the bare minimum right now. The bare minimum is fine. That's where the kisses and hugs and cuddles and giggles can find me. Any more than this and I have no room for them. So I do things in the Little Way, just trying to manage the small things.

Now if you'll excuse me, two small things are calling from their cribs. Time for Tuesday!

Tuesday

Tuesdays are always busy and a little stressful. For a homebody like me, Tuesdays stink. I get to see my friends, and I love that part. I'm never sorry I went out. But dealing with all the car seats and strollers and diapers bags and shoes makes me positively nauseous. Having to remember so many things just to get out the door is just exhausting. My mommy brain is bad right now, and it feels like I'm always forgetting something crucial. I am done borrowing books from the library. Can't remember to return them. Done scheduling anything for any day other that Tuesday or Friday. Can't remember appointments. Done cooking anything I don't know by heart. I WILL screw up anything new. Done tackling projects outside of the weekend. I'll get too sidetracked to do anything beyond making the initial mess. Done trying to go to a Mass that might fit our schedule better. Sundays at 11 means we can predictably get out the door. Done, done, done. My brain has melted into a little puddle that can't reasonably extend beyond changing diapers and wiping counters. I'm fine with that. I love what I do! But I have to be reasonable about my expectations and stick to the bare minimum right now. The bare minimum is fine. That's where the kisses and hugs and cuddles and giggles can find me. Any more than this and I have no room for them. So I do things in the Little Way, just trying to manage the small things.

Now if you'll excuse me, two small things are calling from their cribs. Time for Tuesday!

Tuesday

Tuesdays are always busy and a little stressful. For a homeboy like me, Tuesdays stink. I get to see my friends, and I love that part. I'm never worry I went out. But dealing with all the car seats and strollers and diapers bags and shoes makes me positively nauseous. Having to remember so many things just to get out the door is just exhausting. My mommy brain is bad right now, and it feels like I'm always forgetting something crucial. I am done borrowing books from the library. Can't remember to return them. Done scheduling anything for any day other that Tuesday or Friday. Can't remember appointments. Done cooking anything I don't know by heart. I WILL screw up anything new. Done tackling projects outside of the weekend. I'll get too sidetracked to do anything beyond making the initial mess. Done trying to go to a Mass that might fit our schedule better. Sundays at 11 means we can predictably get out the door. Done, done, done. My brain has melted into a little puddle that can't reasonably extend beyond changing diapers and wiping counters. I'm fine with that. I love what I do! But I have to be reasonable about my expectations and stick to the bare minimum right now. The bare minimum is fine. That's where the kisses and hugs and cuddles and giggles can find me. Any more than this and I have no room for them. So I do things in the Little Way, just trying to manage the small things.

Now if you'll excuse me, two small things are calling from their cribs. Time for Tuesday!

Tuesday

Tuesdays are always busy and a little stressful. For a homeboy like me, Tuesdays stink. I get to see my friends, and I love that part. I'm never worry I went out. But dealing with all the car seats and strollers and diapers bags and shoes makes me positively nauseous. Having to remember so many things just to get out the door is just exhausting. My mommy brain is bad right now, and it feels like I'm always forgetting something crucial. I am done borrowing books from the library. Can't remember to return them. Done scheduling anything for any day other that Tuesday or Friday. Can't remember appointments. Done cooking anything I don't know by heart. I WILL screw up anything new. Done tackling projects outside of the weekend. I'll get too sidetracked to do anything beyond making the initial mess. Done trying to go to a Mass that might fit our schedule better. Sundays at 11 means we can predictably get out the door. Done, done, done. My brain has melted into a little puddle that can't reasonably extend beyond changing diapers and wiping counters. I'm fine with that. I love what I do! But I have to be reasonable about my expectations and stick to the bare minimum right now. The bare minimum is fine. That's where the kisses and hugs and cuddles and giggles can find me. Any more than this and I have no room for them. So I do things in the Little Way, just trying to manage the small things.

Now if you'll excuse me, two small things are calling from their cribs. Time for Tuesday!

I refill this fruit bowl three times a week.

And that doesn't count the bags of apples and grapes and pints of strawberries in the fridge. Sheesh.

Princess seeking her Prince Charming!

So if you're a parent of girls, you may have crossed paths with the "Princess Sticker Face" activity set. Believe me, it is WELL worth the money. Grandma sent Molly this charming set for her birthday and I assure you, it's comedy gold. 

Disney does say that it's about what's in your heart...right?

Let's meet some of the young ladies. 

He really didn't know what he loved more; her cute smile or the sweet way she raised that left eyebrow.

She really never knew if there were actually two swans, or just her eyes playing tricks. They had a way of doing that...

Her father swore up and down that the red tiara brought out the blues...in her eyes, I mean.

She still maintained that a grander chin tiara had never been seen in any of the five kingdoms!

Those wide set eyes left him speechless every time. Like really, really speechless.

Her sisters lived in a jealous rage, envious of the third eye she possessed. They'd often make fun of her, cackling things like, "like putting lipstick on a whole litter of piglets!" She couldn't be sure, but she thought it might have something to do with her love of farming. 

You just couldn't deny the fact that her eyes closely resembled the fleur de lis wallpaper.

It was like her mother always said. "If you've got screwy eyes, just accessorize the hell out of the rest of it."

Her stylist reassured her a second time, "the off the shoulder look really accentuates your best feature."

The way her diamond necklace threaded right through her throat was unnerving...but a little thrilling. 

The demure way she clasped her hands and giggled almost made him forget how completely wall-eyed she was.

Boy, when her mouth twisted into a wry grin, there was no other way to describe it. Yep, "twisted" would work just fine.

the one where laura rambles about how difficult it is to make choices

So, I need some help, here. A sort of, "what would you do," as it were. 

On Tuesday I'm going in to meet with my GI. He's going to tell me that in one month, when I'm done with my prednisone, he wants me to start Remicade infusions. Sounds simple. 

Remicade will likely be very successful. It usually is. However, it comes with many risks, like cancer, rheumatoid arthritis, other autoimmune conditions, general side effects of starting a new drug, and on and on and on. Remicade is usually successful for a few years and then loses effectiveness, and that's when you switch to a new biologic (read: immunosuppressant). There are about 5-6 biologics on the market right now that might help, making my span of drugs about 12-15 years or so? That's a long time to be on drugs that are essentially toxic. 

Left untreated, my colitis poses the increased risk of colorectal cancer in the future, as well as debilitating daily symptoms when I'm dealing with a flare-up. We don't know when, and we don't know if. But the risk does increase. Additionally, it continues to progress, leaving daily life difficult some days.

So I have a month to come up with other alternatives. And there are MANY. I belong to several message boards and forums, and on those sites, participants generally list their therapies in their board signatures. They can range from diet to pharmaceuticals to meditation to acupuncture to chiropractics to herbals to nicotine to almost anything you can think of. The bottom line is that there is no cure, only symptom management. Keeping the disease in remission is key, but it never goes away. Different things work for different people, and at different times. You really just don't know what's going to respond, and when. 

So my dear friend Em emailed me yesterday and did what friends generally do and was like, "what is this immunosuppressant talk?! There must be another way!" and we talked about a few other more natural options. The problem is this: I don't have the time to try everything, but I'm afraid of missing something that may work without causing more harm to my body. 

So, simple, right? Em told me to look at the Autoimmune Protocol Diet, which is essentially a super ramped-up Paleo diet. It looks strict, but it also seems like something I could do. But do I have that kind of time? Mama needs to get into remission! My heart tells me that it might be worth it to suffer in the short term in order to have better health in the long term, but the desperation of a flare is enough to make anyone sign up for anything. And when you start the biologics, there isn't really a point where you change your mind. They're big. 

And THEN. I'm sitting in Mass today and the Gospel is "that one." "Oh ye of little faith, why do you let your heart be troubled? One cannot serve two masters." Aw, crap. Is the quest for health becoming my master? Is there a point where I just need to let go and trust that my health is safely in the hands of The Lord? Isn't it possible that my suffering is just something on my spiritual path that will bring me closer to Heaven? Catholics and their redemptive suffering, man. It's catching. I want to live another 50 years because selfishly, I want to be in this beautiful world as long as possible. But if my obsession with staying in the world trumps my desire to make myself worthy of eternal Heaven, something is clearly off. If I was truly healthy, couldn't I just say, "Lord, I trust in You. Make my health a spiritual health and use my physical suffering for Your good?"

So there is that choice out there. Do I continue the quest for natural health while knowing that sometimes that natural solution never presents itself? Do I have that time? Do I take the drugs and take the chance on serious risks later? Do I just pray a WHOLE lot harder? What do I do now? 

Max up top on tactical, Miles down below for ground support and backup.