Tattoos and How They Relate to Chronic Pain

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20181204_210738I never imaged myself as someone who would ever a tattoo. I had nothing against tattoos; I didn’t see them as something I would do. The most significant reason being I use to be a total wimp about pain. It’s why my ears are only pierced once. It was fashionable to have your ears double pierced when I was a teenager, but I never could bring myself to do it. I was too afraid of the pain piercing would cause. If it hadn’t been for the fact that my ears were pierced when I was an infant, I probably wouldn’t have pierced ears. That wimpiness about pain is why I figured I would never have a tattoo done, no matter how gorgeous expression of individuality they were.

The joke was on me. It turns out; I had to get over my wimpiness where pain was concerned. I’ve come a long way since and I am a far cry from the girl, who use to freak out of the pain of getting a shot or blood drawn. Pain is now my constant companion. It’s been my bosom buddy for going on almost a decade. I have so many pain issues when I go into the doctor’s office; I have to break down my pain score by body part. “Well ma’am, my nerve pain is at eight on the pain scale today. However, my lower back pain is doing pretty well. It’s at a five.” I have learned how to live and thrive despite the pain. I take medication daily and utilize a whole host of therapies to help manage my chronic pain.

Dr. M, my beloved pain management doctor, who gave me my life back use to tell me that I had one of the most pragmatic outlooks concerning pain that he had ever come across in a patient. I accept that I will never be 100% pain-free. I recognize that no doctor is going to be able to cure me. I don’t want a cure or a miracle. All I want is for my pain to be manageable, to be bearable and still allow me to be a functioning mom and wife. I want to still be me.

I had lost myself in the two years between William’s birth and meeting Doc M.  My pain had gotten so bad that I didn’t feel like a functioning person. I didn’t feel like I could be a good mom or wife. I didn’t feel like I could keep going. I had lost hope. Then in August of 2016, I meet Doc M for the first time. He changed my life. He gave me my life back in May of 2017 when he put me on Belbuca. Belbuca was the miracle I needed. My pain is better managed than ever before. I spend a great deal of my time sitting at a three or four on the pain scale. For someone, who spent many years living at a seven or higher, that is amazing.

In September for my thirty-first birthday, I decided to get my first (and only) tattoo. I wanted a reminder that I was more than just my pain. I wanted something to remind me on my worst pain days that the choices which played a role in my health failing were worth it.  So I had my first tattoo done in gorgeous script on my left forearm. It reads, “Even after the pain & heartbreak, I’d make the same choice.

20181207_211054About halfway through having the tattoo done, I knew I had been wrong. It wasn’t going to be my only tattoo. I am not sure if I have adequate words to express the headiness that comes with having a tattoo done. It wasn’t overly painful (though I might not be the best judge of that.) and the endorphin high is spectacular. However, it was more than just that.  Having my tattoo done was therapeutic.

One could ask, “Why would I want to do something that was even remotely painful given that I live with constant pain.” But that is just it. I live in constant pain which I have no control over. Every night when I go to bed, I know there is a chance I will wake up in the morning in a flare. My pain will have climbed throughout the night and not respond well to my medication in the morning. I never know when I will be hit with a flare. Yes to a certain extent I can predict when one will come on, but I can’t predict how severe or how long it will last. Not only is there the uncertainty concerning flare-ups, but there is also always the fear I will wake up one day and not respond to my mediation; the chance that my body will grow tolerant and they will stop working. It’s happened before and likely will happen again.

But a tattoo? That is a pain I have total control over. If the discomfort (which is how I would describe the “pain”) gets to be too much, then I tell my artist, “Hey, I need a break.” and we take a break. I control how much it hurts by choosing the placement of the tattoo. I decide how long I sit for a tattoo. I control it all, and for someone, who doesn’t have any real control over her chronic pain, that is a powerful sense of ownership. Add in the endorphin high which comes with getting a tattoo done and it’s a surreal experience. I have spoken to several friends, who also suffer from chronic pain and have tattoos. They have all said the same thing that getting a tattoo is therapeutic for them.

I went to a get tattoo which would remind I was more than my pain. I came out having experienced control over pain for the first time. I learned something about myself sitting in that tattoo parlor. I learned of another way to look at my pain. I found an experience which was therapeutic. It allowed me to wrestle my pain in an entirely new manner. For the few hours, I was sitting for that tattoo, I pushed my chronic pain out of my mind and dealt with a pain I could control. The explanation seems so inadequate, but I lack the words to give justice to the experience. Despite the lack of words, I can say that getting a tattoo changed how I relate to my chronic pain at a fundamental level.

Earlier this week, I went in and had two new tattoos done. I had a memorial tattoo for my daddy put on my upper arm. Then behind my left ear, I had the Harry Potter chapter stars done in Ravenclaw blue. I don’t know what my next tattoo will be or when it will be done. However, I do know that there will most definitely be more tattoos in my future because as strange as it may sound there is something oddly therapeutic and satisfying about having control over pain even if it is just a temporary control.

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2018 Christmas Books

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Reading aloud is a big part of our family culture. Reading to my kids was important to me before my health failed me. After I got sick, it became an even more significant part of our family life. I read for at least an hour each day to the children. Often I read upwards of two to three hours throughout the day. Reading aloud is something I can do regardless of how I am feeling. It allows me to “travel” with my boys too far away places that I physically can’t go. It provides an escape from my medical issues. Even on days, when pain flares leave me stuck in bed, I can still read to my boys. We’ll curl up together with a book, and I’ll read.

One of my favorite parts of the holiday season is reading Christmas stories, so every year, we gift a new Christmas picture book to each boy. These are then added to our Christmas book basket. The books are given along with their stockings on Dec 6, which is St. Nicholas’ Feast Day. Picking out the books is one of my favorite things to do in the weeks leading up to St. Nicholas’ Feast day. This year I ordered all of the books from Thriftbooks, an online bookstore that specializes in used books.  Here are the picks I made this year.

Paul (10-years-old.): The Race of the Birkebeiners by Lise Lunge-Larsen9290f39f2d13937ca8146a3f2e536b9f2d3bd091
I was unfamiliar with this a book. However, as soon as I saw it, I knew it would be perfect for our oldest. Paul is currently very into all things medieval. So, I knew this was right up his alley. The Race of the Birkebeiners tells the true story of the fierce Birkebeiner warriors of Noway and their struggle to ski a baby prince to safety. They are racing against the elements of nature and human greed, in the hopes of saving the baby prince and bringing peace to Norway. The illustrator Mary Azarian’s provided beautiful woodcuttings that capture the spirit of the story. I am sure that this book will quickly become a favorite.

 

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Thomas (8-year-old): Shooting at the Stars: The Christmas Truce of 1914 by John Hendrix
Thomas is very interested in the tanks, airplanes, and other machines of war. He has been learning about the equipment they used during WWI and WWII. So, I knew that I wanted to get him a picture book that had to do with the Christmas Truce of WWI. There are several pictures books about the truce; I chose this one because I liked the illustrations and the hand-lettered text. This is another picture book which is based on an actual historical event. I can’t wait to share the story with Thomas.

51AEjRHugoL._SL300_Antonio (6-year-old): The Christmas Cobwebs by Odds Bodkins
This book tells the story of an immigrant family, who move from Germany to the United States. They bring with them a box of beautiful glass ornaments. However, a fire destroys their new home/business, and they have to move into an abandoned shack. The father is forced to sell the family’s ornaments leaving the family’s Christmas tree undecorated. However, all is not lost. The family wakes up Christmas morning to find a beautiful shimmering surprise decorating their tree. This is a sweet story with whimsical illustrations. I chose it because the pictures reminded me of Tomie dePaola’s work. He is Antonio’s favorite author.

 

William (4-year-old): The Little Drummer Mouse by Mercer Mayer9372a3861e67eae929069385ff569c16dbdb40d6
I have a Little Drummer Boy music box that is put out ever Christmas. It is one of William’s favorite decorations, which is why I picked this title for him. Mercer Mayer, the author of the Little Critter stories, retells the classic Christmas carol Little Drummer Boy in this endearing book. However, she twists it by having the drummer be a mouse instead of a boy.  The illustrations are bright, cozy and perfect for little ones. It is a great way to introduce little ones to the story of the Nativity in a way that is at their level.

61TBRbxasHL._SX376_BO1,204,203,200_Both Antonio and William are crazy about dinosaurs. Everything is dinosaur this and dinosaur that. With that in mind, I purchased a Christmas book to give them jointly. It is called The Dinosaurs’ Night Before Christmas by Anne Muecke, which is a fun take on the classic poem Twas the Night Before Christmas. As soon as I saw this, I knew I had to give it for my little boys. I can’t wait for them to find it on December 1st along with their chocolate advent calendars.

 

 

 

The last pi3be5e04ee31915dc4d249b767d222e43c7c3397dcture book The Beautiful Lady: Our Lady of Guadalupe by Pat Mora will be given to the boys on December 12, the Feast of Our Lady of Guadalupe. This book is filled with gorgeous illustrations and invites you to learn the story of Our Lady and St. Juan Diego from Grandma Lupita.

 

 

 

 

For those who are interested here is a list of our other Christmas books. I will add links to Amazon for each book, but I am sure most of the titles can be found on Thriftbooks.

Joy to the World: A Collection of Christmas stories and songs by Tomie dePaola (includes The Night of Las Posadas, The Story of the Three Wise Kings, and the Legend of the Poinsettia)
Bambinellei Sunday: A Christmas Blessing by Amy Welborn
Jacob’s Gift by Max Lucado
How to Catch Santa by Jean Reagan
The Twelve Days of Christmas by Gennady Spirin
Saint Francis and the Nativity by Myrna Strasser
Pretzels by the Dozen by Angela Elwell Hunt
Christmas Around the World by Mary D. Lankford (One of my favorite Christmas books. This is my copy from my childhood. I met the author and she signed it.)
The Christmas Miracle of Jonathan Toomey by Susan Wojciechowski
Room fo a Little One: A Christmas Tale by Martin Waddell
The Donkey’s Christmas Song by Nancy Tafuri (one of my all-time favorite Christmas books. It’s a really simple story but so heart warming.)
Merry Christmas, Curious George by Margret and H.A. Rey’s
The Legend of Saint Nicholas by Demi
Santa’s Crash-Bang Christmas by Steven Kroll and illustrated by Tomie dePaola (this can be a tough book to find but so worth it!)
Joseph’s Story by Patricia A. Pingry
Talking Eagle and the Lady of the Roses by Amy Cordova (Another story about Our Lady of Guadalupe and St. Juan Diego)
The Visit of the Wise Men by Martha Jander
Little Star by Anthony DeStefano (This is a very unique take of the story of the Nativity and the meaning behind putting a star on your Christmas tree.)
Bethlehem by Fiona French. (We have the Revised Standard Version of the Holy Bible, Catholic Edition. There is also a King James version.)
The Miracle of Saint Nicholas by Gloria Whelan
The Winter Story of Brambly Hedge by Jill Barklem (We have a beautiful treasury of the Brambly Hedge stories.)
Country Angel Christmas by Tomie dePaola
The Crippled Lamb by Max Lucado
A Little House Christmas Treasure by Laura Ingalls Wilder
The Gingerbread Baby by Jan Brett (board book)
The Night Before Christmas by Clement C. Moore (Board book)
Clifford’s First Christmas by Norman Bridwell (Board book)
Dear Santa by Rod Campbell (Lift the Flap Board Book)
Little Blue Truck’s Christmas by Alice Schertle (Board Book)
Felicity’s Surprise by Valerie Tripps (American Girls)
Josefina’s Surprise by Valeria Tripps (American Girls)
Kirsten’s Surprise by Janet Shaw (American Girls)
Addy’s Surprise by Connie Porter (American Girls)
Kit’s Surprise by Valerie Tripps (American Girls)
Molly’s Surprise by Valerie Tripps (American Girls) *All the American Girl stories are audio books, purchased through Audible.
Jotham’s Journey: A Storybook for Advent by Arnold Ytreeide. *I am going to put a disclaimer that we haven’t actually read this yet. We were gifted it several years ago and the story was way to intense for my boys at the time. I think our oldest was 7 at the time. I am going to try and read it this year to just my older two boys (almost 9 and 10.) It is a great story but not appropriate for kids under 8.)


I am Healthy or I am?

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Photo one was taken Saturday afternoon at the zoo. I was feeling great and enjoying myself. Photo two was taken four hours after the first. I felt terrible and spent the rest of Saturday and almost all of Sunday in bed recovering.

Photo one was taken Saturday afternoon at the zoo. I was feeling great and enjoying myself. Photo two was taken four hours after the first. I felt terrible and spent the rest of Saturday and almost all of Sunday in bed recovering.

I am feeling better than I have, well if I am honest, in years. Not since I was pregnant with Antonio, our third son, who turned six earlier this year. I felt amazing when pregnant with him. Then he was born, and the pain came back with a vengeance. Hurting and feeling terrible was my standard. However, I kept trudging onward because there was nothing else to do. Over the last few months, I have established an excellent team of doctors- an endocrinologist, an internal medicine doctor, a pain management specialist, and a rheumatologist. Yup, I see four different doctors frequently. Plus, I have a cardiologist and a spinal surgeon who I see infrequently. This team of doctors, I have assembled over the last few months have finally started looking at the whole picture that is my health, and it is finally starting to pay off.

Numerous friends and family members have mentioned that I both sound and look like I am feeling better. My childhood best friend told me the last time we chatted that I sounded like my old self- the pre-sick me. My house is nice and clean. The boys and I are doing more activities. As a family, we are taking mini-road trips and going on outings. I am sleeping better and waking up in the morning is more pleasant. I am not suffering from as much brain-fog. I have more energy and less fatigue. Compared to how I was 8 weeks ago, I am healthy. However, here’s a secret…I am not cured. I am not really healthy. I am still sick. I still suffer from immense pain daily. I still have a long litany of symptoms. I still have a long list of diagnosis: Scoliosis, Arthrodesis (term for spinal fusion, which is indeed listed in my records as a medical condition) Ankylosing Spondylitis,Sacroiliitis, Sacroiliac Joint Dysfunction, Rheumatoid Arthritis, Trochanteric Bursitis, Myofascial Pain Syndrome, pain from nerve damage, unknown thyroid issue (still waiting on test), and chronic vitamin deficiency (still looking for the cause of this). I am currently restricted by my doctors to traveling no further than six hours from home. This really sucks, since I am missing out on a family wedding and a road trip to see friends. I am a walking train wreck. Yes, I am feeling better and it’s because I am blessed to currently be under the care of a great team of doctors, who are using medication, physical therapy, nutrition, and alternative medicine to manage my care. They have knocked several of my conditions back into remission, and the other ones are currently being well managed.

I am taking full advantage of this and living life to the fullest. However, even when I am feeling well, I still have to be acutely aware of what I am doing. I am never going to go bungee jumping or skydiving. I will never be able to hike the Colorado trail. I still have to be aware of what I am doing, because there aren’t any guarantees. I could wake up tomorrow feeling like shit- with all my conditions going haywire and out of control. I spent Saturday and Sunday laid up because I had a flare come up out of nowhere. I hadn’t done anything particularly strenuous either to cause it. It’s just the nature of having chronic illnesses, even ones that are being managed well. Being managed well can also change at the drop of a hat. Medicine can stop working for any number of reasons, or a new symptom can crop up. However, I nor any chronic illness/pain warriors can live in fear of flare-ups or conditions coming out of remission. We must make the best of things, both when we feel good and when we feel terrible.


I am not Superwoman…

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I don’t remember what normal feels like.  Nine years ago my health started to deteriorate. I began suffering severe pain while  I was pregnant with my second son, Thomas and it never went away.  I have seen countless doctors. I have had two major surgeries. The first a spinal fusion which fused my spine from T2-L4 to stabilize it and mitigate further damage from scoliosis. The second was an elective hysterectomy because I was tired of being bedridden for a week of each month in agonizing pain. That was one pain issue I could cure, unlike the vast majority of my pain issues. I’ve spent hundreds of hours in physical therapy, massage therapy, and dry needling. There have been numerous steroid injections, and I am the proud owner of my own pharmacy. Heating pads and ice packs are close personal friends. I’ve chased natural methods like oils, supplements, diet, and exercise. Some of these treatments have helped. Some of them have not. However, over the last nine years, I’ve assembled an extensive bag of parlor tricks to manage my pain, to be a functioning mother, wife, and friend; so I can be something beyond my pain. In the last nine years, I have learned how to live and thrive despite my medical issues. I have made sure that my medical problems don’t define me, while at the same time being open about the struggles of living with chronic pain to help raise awareness.

One of the most common things I hear is, “I don’t know how you do it.” Followed up by, “You are superwomen.” I am not superwoman. There is nothing special about me. It isn’t some fantastic secret power that allows me to do what I do. There are thousands and thousands of women and men, just like me- living with chronic pain, disabilities, and chronic illnesses that are thriving just like I am. I do what any mother would do. I strive to give my children the best life I can. I want them to have a happy childhood. I want them to know that they are loved. I don’t want them to look back on their childhood and think, our childhood sucked. Mom was always unhappy, miserable, and sick. I refuse to let my illness destroy their youth, and so I fight back against it with every fiber of my being. That isn’t being superwoman; it’s a mother.

People with disabilities, chronic pain, or chronic illness don’t want to be superheroes. Sure, it can be flattering when someone says, “Man, I can’t imagine living with your condition, you must have superpowers.” However, the reality is that most of us would love to be normal again. We would love not to hurt. We would love not to be sick all the time. We would love not to have to count spoons of energy. We would love not to have to weigh every choice by the consequences it would have on our health and be able to go with the flow living without worries. However, until cures are found for us, we will continue to fight against our diseases and pain. We will fight to be more than our illness/pain. We will fight to be the best parent, spouse, and friend we can be. We aren’t superheroes. We are just regular people, who have different challenges then you do. We want to make the best life for ourselves and our families that we possibly can.


Intentional Motherhood

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Earlier this month, I attended the wedding of my childhood best friend. We’ve been friends since we were in first grade. She might as well be my sister after we have been through as friends. I was honored to be a member of her bridal party. The wedding was a child-free event, so my husband and I left all four of our boys with my aunt for the four days and took our first real childless trip. I have never been away from my children longer than one to one and a half days. Almost all the occasions that I have been away from my boys have been hospital stays- such as when I had my spinal fusion, and Mark always brought the boys to see me. So I had pretty much had never been away from my children. However, the boys did fantastically, even our youngest William, who is three did great. I honestly was worried about how he would do because he doesn’t like me going to the store without him. Mark and I had a wonderful time. We had the chance to reconnect as a couple outside of our identity as parents. The wedding was wonderful. I had the opportunity to see tons of old friends, who I haven’t seen since I graduated high school.

Interestingly enough, I was pretty much the only mother there in my age group. Of the bridal party, there was only one other mom. The majority of the bridal party, the bride, and most of the friends of the bride and groom had no children. I knew this when I was preparing for the wedding, and it caused me to have what I can only call an identity crisis.

Up until the weeks leading up to the wedding, I have never felt bad about being a stay at home mom. For as long as I can remember I had wanted to be a stay at home mom, even when I was a kid myself I knew that ultimately I wanted to have a family. I got married young. We started our family right away. We chose to have a larger than average family. We decided as a couple that I would be a stay at home mom- a homeschooling one at that. Never once have I felt ashamed of that choice or inadequate for being nothing more than a stay at home mom, until I was preparing for my friend’s wedding.

All of a sudden, it didn’t feel like my choice to be a mom was enough. I was about to spend four days with six women, who all worked outside the home. Two of them are nurses. One runs a non-profit. One was a teacher, up until she had her son a year ago. One has traveled the world as a dancer and is now pursuing a career on Broadway. The last one works at the university in our hometown. All these women are doing great things. They are out contributing to society. As I was packing for the trip, I didn’t feel like I was doing anything worthwhile like they are. I don’t bring any income into the home. Some might even say I squandered away my intelligence and college degree. All of a sudden, I wanted to be doing more than just being a stay at home mom. Except, did I want to be doing more or did I merely feel like I should be doing more because of societal standards? I agonized over my clothing choices, not wanting my clothes to shout that I was just a mom. I fretted over what topics I was going to converse about with the other guests.

I spent time post-wedding reflecting on being a stay at home mom versus working outside of the home. Somewhere along the drive home from D.C., I had an epiphany concerning myself and motherhood. I have nothing to be ashamed of. The jobs of the other bridesmaids are no more important than my role as a mother. I am not saying their careers are unimportant; instead, I believe all our jobs are valuable. My children are important; they help to ensure the continuation of society. If I am happy being a mother, why should I feel ashamed? The answer is I shouldn’t. Motherhood isn’t something I accidentally fell into. It isn’t something I chose because I had no other options. I decided it because I wanted to be a mom. For me, there is fulfillment in being a stay at home mom and raising children. I have sacrificed my health to have my children. Each day, I choose to get up and be a hands-on mommy, despite my chronic pain. I force myself to go beyond my pain and be present for my kids. Being a stay at home mother is a worthy choice. It can be easy to fall into the trap of society that tells us motherhood, especially stay at home mothers, have no value. However, this is false. Motherhood is beautiful. My intentional motherhood is a beautiful and valuable thing. It is my life. These photos are a glimpse into what deliberate motherhood looks like in my family. Are you a stay at home mom? Have you ever been made to feel inadequate for being just a stay at home mom? What helps you to remember that your job as a stay at home mother is important and just as valuable as careers outside the home?

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Leaving Baby Season

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For eight years we’ve been in baby season. For eight years I’ve either been pregnant or had a baby in my arms. Like clock work every time the baby in my arms became a toddler we would decide to try for another. God blessed us with being able to easily conceive. However, I didn’t do well pregnant. Pregnancy wasn’t kind to my body. I wasn’t one of those women; who loved being pregnant. Frankly; I hated pregnancy but I loved the end result. The end result was worth all the pain and misery pregnancy brought. I loved the ending so much we had 4.

The fourth coming after a spinal fusion and he is our last. My poor back can’t do another pregnancy. Another pregnancy has a high potential to put me in a wheelchair and put my pain to a point were pain management can no longer help me. The thought that he is our last makes me sad but it isn’t the devastating sadness I felt when the surgeon told me I couldn’t have William. It’s more of a fond sadness. A wistful sadness that I won’t ever hold my brand new baby and fall head over heels in love with another being. A love so strong that it’s all consuming. That I won’t ever get to see my husband hold his new child for the first time radiating love. That I won’t ever see my sons light up with joy when they meet their new sibling.

In 9 days I will be having a hysterectomy out of medical necessity. The surgery is final. It says with a decisiveness that we are leaving baby season. That our time here in this season of new life is up. That we must move on. Move on we will.  It opens up new adventures for us to take. So, while there might be some sadness that this season is coming to a close there is also a sense of excitement for our new adventure.

As we prepare to move on I am left with a handful of wishful thinking items that I am unsure of what to do with. Things I held onto with the intention that one day I would give them to my daughter or daughters. However, there will be no daughter. Despite my prayers (and Paul’s prayers) God did not bless Mark and I with a daughter. I wouldn’t trade any of my boys for a daughter but I do wish there had been a fifth baby that was a girl. Yet, for reasons I do not understand God wanted me to be a mom to only boys. I think the lack of a mother-daughter relationship is what makes having a hysterectomy most difficult for me. Knowing that now there really is no chance that we will ever have a daughter. There are things and experiences within a mother-daughter relationship that just doesn’t exist in a mother-son relationship.

There is a part of me that mourns the loss of that potential daughter so strongly that I want to throw caution to the wind. I want to cancel the hysterectomy and roll the dice and get pregnant again. I want to roll the dice and say who cares if I end up in a wheelchair. So, what if my pain gets to a point that pain management can’t help me anymore. The pain; the loss of being able to walk would all be worth it if it meant that I could have a daughter. If it meant I could give Paul the baby sister he so desperately wants and still asks for on occasion. But, I can’t do that. It’d be the height of folly and would make me a terrible mother and wife. I can’t be that selfish. Mark deserves a wife that isn’t in a wheelchair in agonizing pain. My boys deserve a mother; who can be a mom. That potential daughter deserves a mother; who can be a mom. To try and have a daughter means I give up the ability to be a good mom and wife and I can’t be that selfish.

So, instead I prepare for a hysterectomy. I prepare by snuggling with William and breathing in his sweet baby scent; knowing that I won’t be able to call him baby much longer. He is one and before I know it he will be a totally independent toddler. I prepare by getting rid of the baby items as he out grows them. Donating them; so that they may bless other families. Lastly, I prepare by carefully boxing up the dreams that were for Alexis. It’s time to say goodbye not only to baby season but also to Alexis; for she will never be.


We Have A Walker

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William is a full fledged walker now and has been for about two weeks. Walking has always been my favorite milestone. I don’t dread the extra mobility and mess that comes from having a walker. Watching the little one teeter and totter as they explore their world at a completely different view brings me incredible joy. It’s also nice not to have to carry them baby everywhere! However, there is something very bitter sweet this time around as I watch William enjoy his new found freedom being a walker has brought him. I am reminded that he is now approaching one and soon I won’t be able to call him a baby. He will be a toddler. I am acutely aware that this is the last time I will watch my baby learn to walk. Never again will I watch and cheer on my baby to take those first few steps. Never again will I encourage my baby to have the confidence to trust himself and let go of the furniture to walk unassisted. William is our last.

I have known that William was our last; since I was put on bed rest 2 weeks before he was born because of debilitating pain. I knew when the midwives and OBGYNs couldn’t come to an agreement on inducing me. There were those that were in favor and than there were those that didn’t want to deal with the extra complications my back added to the picture. My surgeon said it was probably unwise to have another baby. My pain management doctor said it would be disastrous for my health. My body tells me daily that it couldn’t handle another pregnancy. Knowing all this has made me want to savor every moment of his babyhood. I am acutely aware of what a miracle he is and how blessed we are to have him.

I have carefully saved our baby stuff since Paul was born. As each boy outgrew things I would carefully pack them away for later. When the next baby needed them I would retrieve them from storage. This has been the cycle for the last seven years. However, this time there is no need to pack things away for the next baby. So, as William has outgrown stuff I’ve sold or donated most of it; keeping just a select few clothes to turn into a quilt. It has been incredibly hard to give away the baby stuff; not because I am a huge sentimental person and want to keep every little item but because it makes the knowledge that William is our last a reality. It confirms that my body has betrayed me and can not carry another child.

You hear of those women; who say they feel done. That they can’t imagine having another child. I find myself envious of that because I don’t have that. It’d make things easier if I did. I can’t imagine not ever having another baby. I hate pregnancy….I loath pregnancy but I love babies. I love being a mom. It’s something I dreamed about for as long as I can remember. I tried to adopt a baby at 10 years old. Not as in I wanted my parents to adopt the baby. It was a full fledged case of I wanted to adopted the baby myself and be her mom. I was certain I would make a better mom than her biological mom.

I can’t say that if we were able to still have children we would. I just want that option. I want the option to have another child be there. But, it isn’t an option; so instead I find myself making sure that I am enjoying every ounce of babyhood that William has. I am basking in it. As I watch him toddle across the living room I am reminded of all the reasons why this is my favorite milestone. I celebrate it. Soaking up the joy but in the private recesses of my heart I might just cry a little.


Family Fun on the Cheap

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I love going out as a family to experience new things. I love taking our kids to museums and other activities. However, with 4 kids it can get expensive. We quickly figured out that even with just 2 kids it could get expensive. So, my goal is for my children to be able to get great experiences but do it in such a way that we don’t break the bank! Here are some of our favorite ways to have family fun.

Explore Local/State/National Parks: Many parks are free or very cheap to get into for the day. If you will be going to a lot of national parks getting an annual pass is well worth the cost. It’s $80 for a family pass. However, there have several different kinds and specials. If you are a military family you can get a free one. With 58 national parks there is something for everyone. Go here to search and see what parks are near you or near your vacation spot. State parks are also a great place to visit. It’s easy to find these with a quick google. Same for local parks.

Museum Passes: For our family it is almost always a better value to buy a yearly family pass to local museums, aquariums and zoos. Most of the times they pay for themselves in 2-3 visits. Also, many of them have great reciprocal programs that can be used if you travel often to visit out of state family. The three best values that I have found (that get you access to the most museums/zoos/sciences centers are the following two. Boonshaft Museum of Discovery and CuriOdyssey. I always suggest that if you are buying a membership (especially if it isn’t local) and planning to use the reciprocal program on a regular basis that you call the places you are interested in using it at and make sure they are still part of the program.

Groupon: This is a great place to get discounts for local places. You can also find off the wall places that you might not normally have found. Two years ago when we visited Oklahoma for our Godson’s baptism I was able to get a groupon to The Museum of Osteology in OKC. This is a totally unique off the wall museum and my kids loved it. They wish it was close to us so we could go back on a regular basis. I always encourage people to check out lesser known museums. There are some real gems out there. This summer on our way home from a family reunion we are planning to make a slight detour and take our kids to see The Unofficial Lego Museum.

Blue Star Museums: This is specific to military families. From Memorial Day to Labor Day many museums across the USA take part of the blue star program and give free admission to military members and their families. You can find a list here. The list for the upcoming summer will be available in May.

Tents for Troops: Another program specific to military families. This program is a collaboration of camping sites across the USA that allow military members and their families to camp for free. Info on this program can be found here.

Free Bowling for Kids: This is a great program that families can take advantage of during the summer. Info can be found here.

Free Skating for Kids: Another great program for families to take advantage of. This one is all year. Info can be found here.

Community Programs: A great place to find things to do is to check your local town or nearby towns websites. Often you can find things like concerts in the parks, theater performances, farmer markets, parades, festivals and other free/low cost activities. Not only do you get to spend some good quality time with your family but you also help teach your kids the importance of community.

Local Library: A great place to find things like story time and other fun activities. Our current local library shows new kids movies on a big projection screen every couple of months. It’s free to go. My kids get the experience of going to the movie theater without the price tag.

$1 Movies and Movie Nights at Home: Some communities have dollar theaters which is a great way to take your kids to movies without it costing an arm and a leg. Regal Cinemas offers a program called Summer Movie Express where they play family friendly movies for $1 a piece. Info can be found here. We like to do movie nights at home on a regular basis. We will either borrow a new movie from the library (libraries are a great free way to enjoy new movies) or rent one from Redbox. We’ll have popcorn and sometimes I’ll buy a couple $1 boxes of candy for the kids. Everyone will get into their pjs and we’ll all hang out in the living room and watch the movie together. Here are some other ideas from interest to make movie nights at home more special: Drive in Movie at home, backyard movie night, Dinner Themes to go with Disney Movies and Concession boxes.

So, what is your favorite way to have family fun on the cheap?


Birthdays Galore Without Going Broke

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It’s birthday season in our house. We have three birthdays between January and April. Needless to say by the time we get to the end of April this momma is birthday out. However, birthdays are important in our house. For example with one son born so close to Christmas I always want to make sure his birthday doesn’t get lost in the celebrating of Christmas. With their birthdays so close it can be tempting to celebrate them at once but I want them each to have their own special day.

Growing up birthdays were a big deal in my family. My father use to wake me up at 5:24am every birthday to wish me happy birthday. He said he wanted to say it at the exact moment his greatest joy was born.(Funny part of it was that my birth certificate says I was born at 5:24pm. He swore it was a misprint.) Even, after I moved out he would still call me at exactly 5:24am my time. That meant for the 5 years we lived in a different time zone he was actually waking up at 4:24 his time to call me. His birthday call is probably one of the things I will miss the most now that he is gone.

For most parents birthdays are an extravagant expensive occasion. It is an occasion were hundreds of dollars is spent. I am part of several mom’s groups and I think for most a birthday party cost somewhere between $500-$1000 by the time they pay for the party and gifts. I just can’t wrap my mind around spending that much on a child’s birthday. You times that by four and Mark might very well have a heart attack. Time and time again I hear parents say kids have to have these fancy parties. It’s what ever one else is doing. They expect it. You build your child’s expectations.

Our children always enjoy their birthdays and  we are not spending $1000s of dollars on them. The birthday boy gets to pick where they would like eat for dinner that night. (It’s almost always chic-fil-a) We do cake, ice-cream and gifts together. They pick a family activity to do. In past years we’ve had movie night at home, visited museums and picnics at the park. As they get older we start having small low-key parties at our house. Nothing fancy. We invite a few friends over: play and share cake with them. The kids have a great time. The stress is low for me and it doesn’t break the bank.

So, here’s to making birthdays special and remembering that to make them special it doesn’t need to cost a fortune.


Fake It Till You Make It

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pain
“Fake it till you make it” is what my good friend Lauren likes to say. She’s a fellow gimp; a sufferer of chronic pain. Every single person has experienced pain at some point in their life. For most people pain is temporary. It’s something that goes away with they get better or their circumstances change. Then, there are people like me and Lauren, who suffer from chronic pain that by definition either persists for a long time or constantly recurs. A better definition is pain that never goes away and has no end in sight. I have had pain; to some degree for the last five years. I had a nine month reprieve when I was pregnant with Antonio. The pain subsided and went into hiding but came back with a vengeance when he was born.

I was eight years old when they diagnosed me with scoliosis. Scoliosis that was so severe they thought I had bone cancer or something. I thought it was pretty crazy at the time. How could there be something wrong with me? I didn’t hurt. I didn’t feel sick. Six months later I started wearing a hard shell back brace; my personal torture chamber. If I hadn’t hurt before I did now. They said it was going to fix me but all I knew was I went from not hurting to hurting for eighteen hours a day and wanting to do nothing but cry. I had to learn how to function in pain and how to push past it. (This was good training for the future) I wore the brace for three years. Imagine my relief when they said I was done and never had to wear the brace again. If my parents would have let me I would have burned the thing. (I believe it is somewhere in their attic; so maybe one day I’ll get to!)

brace

Similar to the brace I wore

At 11 years old I thought I was done with scoliosis- done with the pain. Up until high school that was true. In high school I started to have flare-ups. They were almost always in times of high stress. I would end up in horrible pain for several weeks and then it would subside. I had to have special accommodations at my job because I couldn’t stand for 4 or more hours without ending up in pain. I had to quit a job because they couldn’t accommodate my need to be able to sit down.

However, for the most part I still lived a normal life. I was able to go hiking, play sports, go dancing (badly), wear high heels and do things quickly. I had no clue the sort of limitations chronic pain could put on you. When Mark and I were engaged I saw a back doctor and did a bout of physical therapy because of a bad flare-up. This doctor told me I wouldn’t need a spinal fusion till I was an old lady. I thought I had decades. Fast forward five and a half years later Mark and I were sitting in a different doctor’s office and he was confirming what we already knew. I needed a spinal fusion and I needed it as soon as possible. We saw him in April and I had surgery June 6.

My scoliosis had progressed at an alarming rate in the previous five and half years something that was highly unusually. When someone with scoliosis reaches skeleton maturity (around eighteen.) their curves stabilize. If they do worsen it is by half to one degree a year. My curves changed between twenty to forty degrees each. At the rate they were progressing I was going to start having issues with my internal organs in the next few years. My surgeon ended up fusing from T-3 all the way down to L-4. Basically half my spine.

spinal fusion
The black box shows the portion of my spine that was fused.

The pain right after surgery was the worse pain I have ever experienced. Those first few days I was sure that I was going to die because of the pain. Given the amount of pain drugs I was on I shudder to think of what that pain would have felt like without medication. When I woke up in the ICU my pain level was so high I remember begging for pain medicine despite the fact that I was on a morphine pump. Mark says I pushed the button constantly and kept saying the stupid thing wasn’t working. I didn’t even know who Mark was. I just knew that he was important. My lifeline holding me together. The first several months after the surgery are a pain filled haze. There are large holes in my memory.

We had hoped that a side effect of the surgery was going to be no more or at least significantly less pain after I got through the recovery. Pain relief wasn’t the reason we did the surgery; stabilizing the spine and preventing damage to my internal organs was. But we were hopefully it would greatly help with my pain. Originally, we thought it had been successful. Six months out of surgery I still had some pain  but it was way less. As long as I didn’t overdo it. The only part that was still extremely painful was my left shoulder blade area but it wasn’t all the time. It was occasional and I wasn’t going to complain.

July 2013 Mark was deployed and I was preparing to move the children and myself to a new rental house. During that process I started to have pretty severe pain in my right hip/lower back area. At first I thought I had just over done it. However, even with rest and doing every trick I knew to help with muscle strain nothing helped. The pain just got worse. Pretty soon it was radiating into my butt, upper leg and lower back. I started to have trouble walking and started to hear a popping sound. Off to see the back doctor I went. He diagnosed it as dysfunctional si-joint. Also, by this time my shoulder had gone from an occasional pain to an all the time pain.

I have accepted that pain problems will always be part of my life. I’ve been blessed that we have good health insurance and I have good doctors who work with me to try and manage my pain. But managing my pain doesn’t make it go away. It is simply a band-aid fix. We simple put a bandage on the pain to lessen it. When that bandage falls off my pain returns full force. I hurt every single day. Odds are I am not going to tell you that. I am not going to acknowledge it even if you ask.  I am probably not going to tell you that I hurt or I will play it down. When I tell you I am fine when you inquire as to why I am limping it isn’t because I think you don’t care. It isn’t because I am a masochist. It’s because talking won’t change it. Telling you about it won’t change that I hurt and most people don’t get it. I’ve had people tell me it’s all in my head. I’ve had people tell me if I just tried harder to think positive I’d feel better. I’ve had people tell me I give my pain to much power.

I don’t talk about it because it’s hard to explain to someone; who hasn’t experienced chronic pain what it’s like. It’s hard to explain how chronic pain affects every single aspect of your life and the lives of those closest to you. I can no longer go hiking. Some days even walking the couple hundred yards to our mailbox is more than I can do. My children ask, “Mommy are you hurting to badly to do this today?” “Mommy, can I sit on your lap or are you hurting to badly?” My six and four year old shouldn’t have to ask that. They shouldn’t have to understand that sort of physical pain. However, it’s their reality no matter how much I wish it wasn’t. I can no longer do days of activities because it wears me out and leaves me hurting. For example this past weekend when we went to Laura Ingalls Wilder’s house. I had to spend the next day taking pain pills and sitting in the recliner with the heating pad to recover. Next week we are going to the zoo with the homeschool group. I have already cleared the next day of our schedule because I know that I am going to be out of commission.

People wonder why I would want to live in an RV with my family. Part of the reason is because I would be able to take care of the space. I would be able to keep on top of cleaning an RV. I am physically unable to keep our almost 2000sqf home clean even with Mark helping me. Something that takes a normal person five minutes takes me ten to fifteen minutes. That’s on a good day. On a bad day it can take me twenty or more minutes. Mopping just the dining room makes my shoulder/neck hurt so badly I have to take a thirty minute rest period. Vacuuming the main carpeted areas puts me out for at least a hour and a half. One a bad day I am incapable of doing either of those things. On a bad day I can barely manage to make meals for us.

The other night I got up to use the restroom and my hip gave out on me. It caused me to fall. Since, Mark was at work I had to drag myself across the floor to our bed and then use the bed and night stand to hoist myself back into bed. Come morning I was unable to get myself out of bed. Mark had to help me. This is the reality I live in. I have to measure everything in terms of if I do x I won’t be able to do y and z. I need to not do x so that later I can do y. My new pain management doctor told me he didn’t know how I was functioning. I told him because I had no other choice but to. My kids deserve a normal mommy- a mommy who can play with them and take them to do things. My husband deserves a normal wife- who doesn’t hurt all the time. So, I’ll fake it till I make it. I will keep putting band-aids on my pain. I’ll wear a smile on my face and pretend I don’t hurt.