Sunday, September 30, 2012

Risk

Every time I post in this blog, or talk to people with radical honesty about my life, I take risks. 


I risk the judgement of others. 

Judge away. It's not that I don't care what others think about me, it's just that, well, actually, I don't care what others think about me. I am who I am, I believe what I believe, and I respect others' rights to their own thoughts, opinions, and beliefs. I just hope others will give me the same respect.

I risk losing a lot.

I risk losing friends who don't view the world in the same way I do. Perhaps I'm too Christian (or not Christian enough) for some, too liberal for others, and too crunchy for many...I've even been accused of being too open-minded. Is that actually possible? Perhaps I say something that goes so far against what someone holds dear that they can't see past my statement to the person they call friend.

I risk losing opportunities to get together with friends or to take care of other people's children because I'm perhaps too honest about my crazy health escapades. In reality, a snapshot of how I'm feeling and doing at any point in time during any given day can be starkly contrasted by how differently I'm feeling and doing on a different day. That I can manage disability and enjoy myself or be an effective and safe caregiver is a difficult concept to comprehend. 

I risk making a fool of myself and/or embarrassing my children.

Then again, since much of the time I am a fool, it's only natural that that might happen more often than not. And isn't it a parents' job to embarrass their kids? I hold this parental duty very seriously!

I risk the consequences of telling my truth. 

See all of the above.

I have thought about holding back at times. Not posting things I feel strongly about, or perhaps toning down my words or my feelings. But that carries risks, too.

I risk not being completely truthful in what I say. If I'm going to say something, I'm going to say it with radical honesty. I know that my truth is just that, my truth. I don't expect it to be anyone else's, but hope, perhaps, that my truth might resonate with someone else and at the very least make someone think about something a bit differently than they have in the past. Or help the person find their truth. 

I risk not being true to myself.
I risk not being my self. 
As it turns out, with all of my many issues, being my self is more amazing than I'd ever thought it could be. Even when shriveled into a ball of pain. Especially when out in nature with my family. And even when people think or say negative things about me. My life is good. My life is full of passion. My life is full.

And best of all, being my authentic self has in and of itself invited other authentic people into my life. People who aren't afraid to ask questions about my capabilities, knowing my disabilities. People who accept my answer that I will always be honest with them about my abilities or lack thereof - perhaps even more honest than I am with myself at times. People who respect my point of view even if it's not their own. People who are radically honest with me. 

It's worth the risk. Life, and joy, and passion, and communication are worth the risk. I'm worth the risk. You are worth the risk. 

Saturday, September 29, 2012

And We're Off!

Life with PsA is never boring. It can be all sorts of exciting, actually. 


Take yesterday afternoon, for example. Out of the blue we gathered our children together and told them to pack their bags! As they excitedly rushed to gather clothing and other items for their seemingly spontaneous outing, I finished up a phone call with my parents, thanking them profusely before hanging up. We loaded everyone into the van and were off on a whirlwind trip. 

My shoulders and neck had been bothering me, so earlier that day I decided to take a nap. Upon waking, I couldn't raise my arms. After some deliberation, I decided a trip to the local emergency department was in order. Not knowing what was going on or how long I'd be there, my parents sprang into action and accepted a horde of children into their home for the night. After dropping me off at the emergency department, my husband transported children to Gramma and Papa's house and returned to keep me company while the meds performed miracles. 


Sporadic Artie had provided me with so much inflammation that it was causing great pain and limiting my range of motion. It felt as if both shoulders were dislocated. Thanks to prednisone, a narcotic injection, and an anti-inflammatory injection, I was on my way after just a few hours. The nurse and the doctor echoed what my gastroenterologist told me just this morning, and what my rheumatologist told me last week - we need to get me back on Remicade - now

We're hoping the five day predi burst will reboot my system and buy me more time. We're hoping the hepatologist will review my chart and decide the liver biopsy I have scheduled for mid-October isn't necessary. We're hoping I can go back onto Remicade soon. 

I'm hoping to learn from this. Why did it take deliberation on my part to come to the conclusion that I needed to go to the ER? If one of my kids were having the pain and issues I was having, I'd have dropped everything and rushed them in. Perhaps I need to spiff up my self-care skills...and remember that with PsA it's possible to go from a little sore to incapacitated in a matter of hours, and I need to pay closer attention to the type of pain, as that makes all the difference. 

Thankfully I'm much better today. The inflammation is greatly reduced and my shoulders, neck and arms feel better than they did before all this happened. I have to remind myself that I'm supposed to be taking it easy. 

Hopefully our next trip will be to our beloved Camp Calumet for a long weekend, and not to the hospital. 

Wednesday, September 26, 2012

Calgon

Some days I wish that Calgon could REALLY take me away.


Picture it ... you're having a rough day. You draw yourself a nice, steamy bubble bath, using Calgon, of course. You climb in, utter the words, "Calgon, take me away" and are whisked to a hammock on a tropical island where you every need and want is anticipated and met.

Sounds lovely. Amazing. Enchanting.

Until you realize that should you be whisked away from your bathtub, you'd not be wearing any clothing. This could be problematic, but easily remedied by wearing a bathing suit in the bath - then you'd be ready for life on the beach. But what if, instead of a tropical paradise, Calgon took you away to Alaska in the dead of Winter. You might freeze to death in just a bathing suit - and soaking wet from your bath.

Be careful what you wish for.

And never post on a double-dose of tramadol, or this is what you get. 



Tuesday, September 25, 2012

Change of Plans...

I lay in bed contemplating whether or not to go back to sleep or to get up. I was Calling In Sick after all. Then the decision was made for me.

The phone rang.

And just like that, I was propelled from my bed, took my meds, got dressed and was out the door. After a short drive, I arrived and was greeted by a happy, but somewhat confused two-year-old Miss M and her Mama. Mama was clearly giddy with anticipation, yet trying to prepare herself for possibly another false alarm. Mama showered while I entertained Miss M, who had decided to collect all the shoes she could find, since Mama told her to find her shoes. 


Daddy's arrival home further confused Miss M, but she gave cheerful hugs and kisses and watched them drive off from the back seat of my car. After a ride full of "Look at THAT!"s and "See Haley? See Alia? See Lola? See Garci?"s we did a little Big Sister Day shopping before making our way to my house.

Duplos, coloring, and blowing bubbles filled the rest of the morning. 

A lunch of watermelon, pretzels with sunbutter, and carrots with hummus was followed by Miss M gladly climbing into bed for stories and a nap.

What would Big Sister Day be without cupcakes? Z baked the gluten-free cupcakes during naptime and we all had fun icing and eating them for snack once Miss M was awake. 



Then outside to slide, inside to do crafts, outside to blow bubbles, inside to play a game of hide and get your picture taken (invented by Alia just today), and finally inside for dinner.




Bath taken, we cuddled bed for stories, then time for bed - but first we send a bedtime photo and some love to Miss M's Mama and Daddy.




And then the news arrived! Little Sister was born weighing 10lbs 7oz and Mama and Baby (and Daddy, too) are doing fabulous!!! Big Sister was sleeping when the announcement came, but shortly after, in her sleep, said, "Whoa! It's a baby!"

Big Sister M will be overjoyed to hear the news in the morning - and to see Mama and Daddy and Baby Sister, too!

This day has been so much better than the Sick Day I had planned. 

Welcome earthside, Baby M! We're so glad you're here!

Sunday, September 23, 2012

Calling In Sick



My PsA is majorly flaring. I can barely bend/straighten my right elbow, my left thumb, and my right pinky finger. My SI joints are making it difficult to walk, stand or sit. It feels like I have a knife between my shoulder blades and my entire chest hurts when I breathe. Nearly every joint in my body is involved, and I'm still waiting to hear from my rheumy if I can go back on Remicade, which I haven't taken in months (or other biologic), but may have to wait until after seeing my gastroenterologist in a week and a half. I may have to wait until after testing after seeing my gastro ... or never, depending on what the tests say. My body hasn't been this bad in a long time. I'd almost forgotten it could get this bad. My allergies haven't been this bad in ages as well.

So ... I'm taking a sick day tomorrow. I'm a homeschooling mom, so that basically means I'm not running errands, not taking the kids anywhere, not doing any housework, and it will be a day of self-directed learning on the kids' part. I will read, nap, and watch movies. I may have my husband make me breakfast and put dinner in the crockpot and have my kids make me lunch. I will take pain meds, use ice/heat as applicable, and take a long, hot, uninterrupted shower. To do the latter, I may need to give my four year old a sword and appoint her Protector of Mama's Peaceful Shower.

Despite the horrendous allergies, the pain, and lack of range of motion, I plan on enjoying every peaceful minute of my sick day!!!

However, there could be one hitch in my wonderful, luxurious plan. A good friend is due to have her baby any minute now, and I'm blessed with the privilege of taking care of her precious two-year-old while she and her husband welcome baby sister into the world. What are the odds she'll going into labor tonight? Whatever they were before I "called in sick" - I'm sure they just went up! I wouldn't mind too terribly though - having a "Big Sister Day" with Miss M and meeting her newborn sister will be just as magnificent as a sick day, perhaps even moreso.

Anyone else need a sick day?

Thursday, September 20, 2012

Welcome Back!

Welcome back!

Well, maybe welcome is the wrong word. I can't say that I'm happy you returned. In fact, I could have gone much longer without your presence in my life. I was living quite contentedly in your absence, and had quite forgotten your imposing and overbearing nature.

One would think that living with you day in and day out would be embedded in my memory forever, but how quickly I seem to forget such painful periods of my life: you waking me up at random times throughout the night; interfering whenever I try to reply to someone online or get some work done; intruding on simple everyday tasks, making them longer and more arduous. You can be such a pain!

I have no idea how I lived with you for so long without losing my mind. It's amazing what a positive difference time away from you made in my life, bringing all the more frustration upon your return. And really, did you have to bring your best friend along as well?

Just you wait! Something positive will come from your intrusion in my life. Perhaps I'll spend more time with my nose in a book instead of staring at a screen. Perhaps I'll slow down once again, taking time to enjoy the more peaceful things life has to offer. If we need to walk hand in hand through this part of my life, I will make the best of it. 

Yes, Extreme Pain, I will welcome you back into my life - your friend Limited Mobility as well. To be depressed by your rapid return would just add to your power. If you have a moment, however, I'd love to introduce you to my friend Tramadol and his buddies Hot and Cold Therapy. I'm sure you will find you compliment each other nicely.

Love and insanity,
Me

Monday, September 17, 2012

Seven

At 10AM the phone rang. My husband, standing next to the phone, answered. It was my sister, asking if we were still planning on going apple picking that day. He said he'd have to get back to her on that - we had a five minute old baby and were a bit preoccupied at the moment. 

I sat in the birth pool, thoughts clouded by birth bliss, cradling my newly born, humongous son in my arms. Ready to dry off and nurse, we were wrapped in a towel and our entourage followed us down the hallway to our bedroom, where we settled in to nurse. But what of his name? It was Daddy's decision. We looked at his round head, his chubby body, and were engulfed in his easy-going energy - Coren Ryu, Crescent Moon Dragon. 

For seven years, you have blessed our life, Moondragon! I love you now, and always, and no matter what!

How does one celebrate such a momentous occasion as the anniversary of one's birth?

If you're a seven-year-old Moondragon, you...


Play with the Bakugan birthday present.


 Make friends with a "Rocky" on the way out for birthday fun.


Stop at Dee's One Smart Cookie to get, and I quote, "The best cupcake I've ever eaten in my whole entire life - and I've eaten a lot of cupcakes!" (Dee's bakery is gluten-free / dairy-free and Moondragon-friendly. The pumpkin maple cupcakes are to die for. )


Go apple picking at Belltown Hill Orchards , and not even miss not getting one of their fabulous apple cider doughnuts, because you've just eaten The Best Cupcake You've Ever Eaten.


Go home to, among other things, have fun eating "apple noodles" produced when using the apple peeler/corer/slicer to prepare apples for dinner.

And, not pictured here, dine on waffles with cooked cinnamon apples for dinner. 

Happy Birthday, my Moondragon!

Saturday, September 15, 2012

Thar Be Pirates 'Ere!



The scent of mulled cider wafts through the kitchen as a horde of pirates tears through the door on their way in search of buried treasure.



Climbing aboard the pirate ship, they search for clues of its whereabouts.

X marks the spot, and the smallest pirates dig up their treasure.

An array of jewels, tattoos, and shiny things now adorning their bodies and filling their loot bags, they go back to their piratey antics.

Avast! It's time for the older pirates to follow ye olde treasure map to the treasure buried deep within the woods, through fierce obstacles and certain danger. 

Returning triumphant, the pirates take what they can - give nothing back. 

New piratey fashion statements are started by a two year old pirate. 



Yes, today my house was overrun by pirates at our annual Pirate Party. 


We host the Pirate Party to celebrate our fourth child's birthday, to get together with friends and have fun, and to raise money and gift cards for a local charity that helps give families in need in our community the peace of mind of that comes with being provided with both necessities such as food and winter clothing and holiday gifts for all family members during the holiday season - the best treasure in the world! 

Tuesday, September 11, 2012

A Special Bunch of 9/11 Heroes...

Today I remember a select bunch of heroes. 

Eleven years ago, I loaded my precious cargo into the car, turned on the radio, and heard the words, "Smoke is pouring out of one of the World Trade Center towers." I ran into the house, told my husband to turn on the tv, and got back into the car. As I drove, I listened to a reporter who was on the streets of New York City. I listened as the second airplane hit. As I pulled into a parking space in front of the fire station, the first tower fell. Upon entering the fire station, I wasn't sure what to say first - to wish my sister a happy birthday or to break the news in case she hadn't heard. That's when I noticed the tv in the office and the firefighters gathered around it. Approaching the fire fighters, I was assured that our fire station field trip would continue as scheduled. 

As our group of adults, toddlers and preschoolers explored the fire station, learned about the different types of fire trucks, the firefighter's gear, and watched the firefighters slide down the fire pole, we were kept abreast of the tragic situation calmly and quietly by the firefighters who had gathered, on duty  or off. We were thanked profusely for continuing with our field trip. We thanked the guys for allowing out visit amidst tragedy and chaos. 

One firefighter took me aside that day and put things in perspective. Hundreds of emergency workers had responded to the towers. Many had surely died. That morning the firefighters at the fire station in downtown Naugatuck, CT were provided with a greatly needed reminder - of laughter, excitement, amazement, joy - of LIFE itself. A dozen or so little smiling faces, oblivious to violence, terrorism, and the horrors of the world. Innocence - the very thing they needed to witness to help counteract the horrific images embedded permanently in their memories.

In the weeks to come, many people were declared heroes, and rightfully so - the emergency workers who went into the towers and never came out; the people on the airplane that took action to try to help save lives; the many that searched through the rubble for survivors. For me that day, there were more heroes. Heroes who sheltered the innocent and showed them a wonderful time while keeping their parents quietly informed. Heroes who scampered about a fire station, asking questions, climbing on trucks, and delighting in ringing the bell - bringing smiles to faces that would spend the following days, weeks, perhaps months in tears. 

Today I celebrate this special bunch of heroes. 

Sunday, September 9, 2012

Twenty 20 Twenty-four Hours To Go

Wednesday, approximately 5PM: Alex's hand collides with Haley's pinkie finger on her right hand. Screaming ensues. A cold compress is applied. 

Minutes later, guests arrive. Haley is distracted by an adorable eight-month-old and stops complaining about her finger.

6ish: Eight-month-old bundle of cuteness leaves, and Haley is once again in agony - because her younger brother sits on her hurting finger. Ice is applied. 

6:01 PM: Auntie Jen and Daddy have been called and a plan is in effect for responsible adults to be on call for boys being left at home whilst girls head to the ED. Dinner is eaten at the girls' request, as they don't want to be in the ED and starving.

6:25 PM: We head to the local Emergency Department. 


6:29 PM: We arrive at the ED, register, vitals are taken, and we wait. Crazy four year old does crazy things, including begging her sister to make the doctors hook her up to the heart monitor and asking me to tell the doctors to x-ray her skull after they x-ray her sister's finger. X-rays are taken, but only of Haley's finger, and the nurse lets Alia watch from the hallway.

7:40 PM: Diagnosis given - no obvious break, but it's suspected she has an impacted fracture along the growth plate. We are advised to follow up with an orthopedist and are given a number to call.

7:45 PM: Haley's hand is splinted and we're given our walking papers, including two pages on what to do for a fracture and a prescription.

7:51 PM: We get in the van, check in at home, and head to the pharmacy, where a prescription for motrin and sweet treats are acquired.

8:30 PM: Bedtime!

First thing in the morning: Haley wakes me up, in pain, requests and is given meds.

9:00 AM: Call orthopedist, give tons of info, and are told to await call back.

10:20 AM: Orthopedist calls back to tell us that they don't take our insurance, and besides, the ED report says her finger isn't broken. 

10:30 AM: Call PCP and given number to another orthopedist.

10:40 AM: Call second orthopedist, give tons of info, and are told they can't see H because we don't live in the right town.

10:55 AM: Scream.

11:00 AM: Call Bristol Hospital. Talk to operator, who transfers me to X-ray. Wonderful Woman answers phone, takes info, calls up report, is confused by the fact that a child without a fracture (according to the report) is sent home in a splint, and puts me on hold to walk down to the ED herself to get some answers. 

11:30 AM: Wonderful Woman finally back from ED with no more answers than we have, as ED records show that Haley does and does not have a fracture. She suggests we call our PCP back and request to be seen.

11:40 AM: Make 1:45 PM appointment to see doctor at primary practice.

1:15 PM: Leave for doctor's office.

1:45 PM - 2:45 PM: In doctor's office with FIVE kids waiting, being seen, waiting, getting orders for x-rays.

2:50 PM: To (different) hospital to wait, register, wait, get x-rays, wait for x-rays to be read, and be told to go back to doctor's office.

4:10 PM: Back to doctor's office. More waiting. More talking with doctor, who gets another doctor's opinion.

4:45 PM: Are told that the x-rays don't show a fracture, so the finger isn't broken. Breathe sigh of relief. Then "new" doctor actually looks at the finger and says there might be a fracture along the growth plate, which is difficult to see on x-ray, and we can forget the splint, but H should tape her fingers together for two weeks just in case.  

Approximately 5:00 PM: 24 hours after finger is broken - or not - we leave the doctor's office knowing just as much as we knew twenty-four hours earlier. Haley's finger is definitely not broken, unless it is. 

And yes, by this time I did want to be sedated. 

Thursday, September 6, 2012

A Most Upsetting Thing

Alia is upset. 

It all started several days ago when a friend of a friend messaged me to see if I'd be available to entertain her adorable eight-month-old two days a week for a couple months. We asked and answered questions, and decided it best that the family of three come for a visit before making a final decision. 

To prepare my kids for the possibility that we'd be entertaining a baby a couple days a week for a while, and for the arrival of guests to our house, I told them about baby A and his moms. 

Alia was taken aback. TWO moms. Now, don't get me wrong, she knows that families come in all shapes and sizes. She knows families in all shapes and sizes. The thing is, she never thought about the ramifications of having two moms before. The more she thought about it, the more she got upset. Finally, she came to me and expressed how wrong it is. Not how wrong it was that A has two moms, but how wrong it is that she doesn't. Why did I marry a Daddy and not a Mommy? Wouldn't life be so much better with two mommies? Not that she doesn't love her Daddy, mind you - and not that his existence isn't integral to her own - but two mommies would be so much better! That she lacks two mommies is A Most Upsetting Thing to her four-year-old mind. 


After our visit with baby A and his parents ... well, after that and the following 24 hours of medical drama (stay tuned!) ... Alia once again spoke of the Most Upsetting Thing. It occurred to her that with two mommies, there might be twice the mamamilk. Now, apparently, I have not only robbed her of the Awesomeness of Two Mommies, but also of the Unlimited Supply Of Mamamilk Snuggles - even though she has always had that anyway. 

I may never be forgiven. 

Alia is sticking to the plans she made months ago - she will have both a husband and a wife. This, apparently is the Best Idea Ever. 

Monday, September 3, 2012

The Writing On the Wall

A four letter word is written on the wall next to the bathroom mirror - the mirror in my bathroom. 




Upon seeing the four letters, I was instantly annoyed ... and then, curious. Approaching the three-year-old graffiti artist with a neutral tone of voice, I inquired as to whether or not she had decorated the bathroom wall with that four-letter-word. A smile swept over her face, reaching her eyes. 

She joyfully admitted to her crime, "Isn't it WONDERFUL?" 

"Is it wonderful that you broke two rules - not to write on anything but paper and not to climb up onto the bathroom counter?" 

"No, that's not wonderful. I probably should NOT have done that. But..."

"But?"

"I love you SO MUCH I wanted to write your name there - M A M A - so I can see it even when I can't see you. And if I put my face just right, it's like you're right next to me."

My heart melted, my agitation with it.

We could have gotten into a conversation about breaking rules and the consequences of our actions. I could have made her scrub the wall. Instead, I decided to focus on love. I thanked her for loving me so much. We talked about love and ways to express love and how much we love each other. 

Before she scampered off to play, I asked if she knew where she was supposed to write. 

"Only on paper, silly!" 

"If you knew that, why did you write on the wall?"

"Ask my heart!"


In that moment, she reminded me of the joy that results when love encourages irrational actions. Sometimes, although we think we see the writing on the wall, we need to look between the lines, for that's where love lives. 

A year later, when I look in the mirror, my eyes are drawn to four faint letters written in three-year-old script. You know what? Even though I can't see Alia's face at that moment, I can see her heart. 



Saturday, September 1, 2012

Stewardship



















Stress is high, finances are low, and many of us worry about how to make ends meet. I admit that what money I have to put in the offering plate at church isn’t much compared to what others might be able to give.  All things considered, to help alleviate some financial stress I’ve decided I’m not going to give any of my money to the church.

Don’t get me wrong, I’m very thankful for what I have, and am very invested in our church, but God has entrusted me with a lot – amazing kids, a wonderful husband, a house, and everything that comes with nurturing children and a marriage and managing a household. He has gifted my husband with a job that pays enough to keep a roof over our heads and food on our table. God has blessed me with the opportunity to take care of other people’s children so we have “extra” money every now and then. God has brought people into my life who care for me and challenge me, as well as include me in a network of mutual support so that I am rarely in need of anything. God has led me to a place where I have a somewhat unique view on the value of the things and the people in my life.

God has provided all these wonderful things to me.  To be a good steward, I need to carefully and responsibly manage these gifts.

In order to do this, I will put money God has blessed us with into the offering plate. I will also offer the time and talents God has given me to the church. In doing so I will give back to God what He has so generously given me. You see, the money wasn’t mine in the first place.

Life is a gift from God. Everything we have in this life is a gift. It is only right that we give back to the Giver of Gifts what we are able. Perhaps going beyond what we are comfortable with to what we are really able to give. 

What would happen if we were to choose to move through our lives seeing gift bows on each dollar we spend, remembering who it is that provides us with the money? Would we then think about how much of our money we’re giving to God, or rather how much of God’s money we’re keeping for ourselves? 

Deuteronomy 8:17-18 (The Message)  If you start thinking to yourselves, “I did all this. And all by myself. I’m rich. It’s all mine!” – well, think again. Remember that GOD, your God, gave you the strength to produce all this wealth so as to confirm the covenant he promised to your ancestors- as it is today.

[Ok, I'll admit it - I cheated a bit with today's post. I was asked to write an article on Stewardship for my church newsletter, and now that the newsletter has been published, I thought I'd post it here as well. You are welcome to share!]