Space Mania!!!! U.S. Space and Rocket Center and More

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With the 50th Anniversary of the Apollo Landing coming up on July 16, 2019, my boys have caught space mania just like everyone else. Our local library’s summer reading program is space themed, and we have been reading lots of great space-themed books. Sarah Mackenzie over at Read-Aloud-Revival has a great space themed booklist, which can be found here.

My boys’ top three space picture books are:
1. Moonshot: The Flight of Apollo 11 by Brian Floca
2. The Astronaut Who Painted the Moon: The True Story of Alan Bean by Dean Robbins
3. Armstrong: The Adventurous Journey of a Mouse to the Moon by Torben Kuhlmann

There have been several great space activities over that past few months at a nearby planetarium.  Our local minor league baseball team is partaking in the Global Mass Rocket Launch being hosted by NASA. My boys are very eager for this event, especially Thomas, who is hoping to shoot off his rocket at the event. Paul, my oldest is drooling over the new lego NASA Apollo 11 Lunar Lander.

Over the years, we have visited numerous air and space centers. Space has always been a favorite topic of at least one of the boys at any given time. Paul was only two years old, the first time we visited the Virginia Air and Space Center. During, the five years we lived in the Hampton Roads area, we visited the VA Air and Space Center regularly. It was an excellent fun way to pass an afternoon. It encouraged a great love of all things space, flight, and airplanes in my young boys.

In the years, that we lived in Virginia, we had the opportunity to take the boys to see both of the Smithsonian National Air and Space Museum and the Smithsonian Steven F. Udvar-Hazy Center. The great thing is admission is free to all 20 museums/galleries that make up the Smithsonians. It is well worth taking the detour out of the heart of D.C. down to Chantilly, VA to see the Discovery Space Shuttle, which is housed at the Udvar-Hazy Center.  It is an awe-inspiring sight.

When we moved to Alabama, one of the first things on the list of things to do in the area was to visit the U.S. Space and Rocket Center in Huntsville, AL. I put it on our bucket list of things to do before we leave Alabama. It wasn’t super high on my list because I felt like we had already done the big space centers. Plus, it is an expenses museum to visit (over $100 for our family). It is part of the ASTC and the Smithsonian Affiliate and gives free admission to people with memberships to other museums within those two networks.

We finally went up to Huntsville at the start of the summer to see the U.S. Space and Rocket center- our two oldest boys had been asking for several months to go. I used our membership to The Western North Carolina Nature Center to get our family into the Huntsville Space center for free. This is one of the best memberships I have found. It cost $69 for a family membership (two adults and four kids) and includes reciprocal membership benefits to both ASTC (science centers) and AZA (zoos) networks.

The U.S. Space and Rocket Center absolutely blew my socks off. It was well worth the trip. Even having been to the Smithsonian Air/Space Museums, there was lots of awesome stuff to see. We spent about 3.5 hours at the center and only saw half of what they had. It is a large enough museum that you either need a full day (open to close) or several trips to see everything. I was impressed that all of the simulators and rides were included in regular admission price; which was exciting for the boys. We typically don’t do simulators/rides at museums since they usually cost extra, which quickly adds up with four kids. The space center had something for everyone. The boys are looking forward to going back again. Our family gives the place a thumbs up! I would even be willing to spend full price admission to get our family in if need be, it’s that good!

If Only I had More Faith in God

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I enjoy social media. I think it can be a great way to keep in touch with far-flung friends. It can give families a way to share photos quickly. I know for me, it allows my Grandma to be able to see frequent pictures of her great-grandkids.  As someone, who suffers from chronic pain, social media can be a great way to mindlessly pass the time when painsominia (insomnia caused by pain.) strikes. Social media can be a great way to find support groups for various chronic illnesses/disabilities. However, there are also downsides to social media.

Every January, I see an alarming number of post from all sorts of people, whom I follow on my social media channels. It happens like clockwork at the beginning of every year.  I have included two examples of what I am talking about.






(Credit: Unknown for both of them)



Now my objection to post of this nature isn’t because I am a crazy atheist, who gets upset anytime God/Jesus are mentioned. I am a Christian. I have accepted Jesus Christ as my savior. I pray regularly and my spiritual life is vital to my wellbeing as an individual.  I am also someone who suffers from severe chronic pain and have for almost a decade. When I read a post like this, I don’t get a warm and fuzzy feeling. What I do feel is that my fellow Christians, whether they mean to or not, are telling me I am just not a good enough Christian. If I was just a better, more faithful Christian;  I wouldn’t suffer from severe chronic pain. After all, as the first picture states, “If you KNEW how He can transform you, how he can take away all that bitterness, that sorrow, that hurt, that depression, anxiety.” Now I don’t personally believe that my medical issues are because I am not a good enough Christian. I don’t expect a miracle healing me from God- if I was blessed enough to receive one; I would rejoice. But God is under no obligation to give me a miracle just because I believe in him. God will love me regardless of how broken I am. He will give me the strength to deal with my challenges.

I am sure some people will read this and say that I am just over sensitive. However, I have had numerous discussions with other people from my various support groups over the years, who feel the same way I do. The easiest way to confirm that my feelings aren’t isolated is to scroll through the comments on this type of post. After all, not only do these sort of sayings tell people like me that we deserve our pain/disease because we simply aren’t good enough Christians; they do immense damage to Christians, who suffer from mental illnesses. Upon reading either one of the images, it sounds as if someone with depression, anxiety, or any of the dozens of mental illness that exist, that they are just not good enough Christians. They are letting Satan be the voice in their heads. People with mental illnesses already have a hard enough time. They don’t need to be made to feel worse because they aren’t Christian enough; they aren’t praying or being faithful enough.

These sort of memes and post aren’t helpful. They aren’t useful tools for evangelizing people. They are harmful. They cheapen God and make him a commodity. They make it sound like if you have enough faith- are devout enough; God will cure you of every ill in your life.
Most importantly, these types of messages communicate that people with chronic medical issues (physical or mental) aren’t good enough Christians. They deserve to have their medical problems because they just haven’t been devout enough. They don’t love Jesus enough.

I love Jesus, and I have a solid faith in him. I have no shame in calling myself a Christian. I will proudly stand up and proclaim myself one. However, I can no longer sit quietly without speaking up while this sort of post frequently circulated. They are belittling and damaging to those with medical issues, even if that is not the original intent. It is entirely possible that people don’t realize the deeper meaning behind them. They believe they are sharing the good news of Christ. I am begging that in the future if you go to click share on a post about how amazing God/Jesus is that you look at the wording of it.  We can share the good news of God without making it sound like our brothers and sisters, who suffer from illness and other troubles are Christians, who need to try harder.

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.


My blessings

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If you described my life to a stranger, they would think it was awful. After all, I have lived with severe chronic pain for almost ten years. Since my second pregnancy, I have battled numerous health problems. I have eight separate diagnoses. (Scoliosis, Myofascial Pain Syndrome, Rheumatoid Arthritis, Neuropathy, Sacroiliitis, Sacroiliac joint dysfunction, Ankylosing Spondylitis, and beginning stages of Thyroid Disease). I have moderate hearing loss in both of my ears. Plus two issues, which they are still doing testing for. I have had two major surgeries- a spinal fusion (T2-L4) in 2012 and a partial hysterectomy in 2015. I am chronically ill and will be for the rest of my life. I wake up every day in some degree of pain. I can’t remember what it is like not to hurt. However, I have accepted this, and I will be the first to tell you that I have a fantastic life. I thought with November ending I would take the time to count my blessings.

1. My HUSBAND! I count myself lucky every day for my husband. He and I celebrated eleven years of marriage this past July. I wasn’t ill when we meet. I was a healthy, lively, active nineteen-year-old, who could go hiking and dancing. However, my health wasn’t long-lived, I have been sick for most of our marriage. My health issues add stress, but at the same time, I believe we are stronger for them. He is my rock; I know he will always be in my corner. He is my best friend and biggest supporter. He always has my back. When I feel like giving up, he’s there urging me to keep up the good fight. He is one of the main reasons that I can get up each day and keep fighting, no matter how bleak things look.

2. My Boys. They are the other reasons; I keep going. My boys are the greatest gift God has given me. Those four crazies give me a reason to keep going. They are my reason for living. They are my joy.  They always amaze me with their empathy and understanding. I have never hidden my health issues from them, frankly because it would be stupid to try. I would fail miserably if I tried. They are always glad to help me and take care of me when I am feeling bad.

3. Doctor M. When I walked into Doc M’s office for the first time in August 2016, I had given up. He was the third pain management specialist; I had seen since we moved in April 2016. The first two have been awful visits that left me in tears. I didn’t think he would be any better. I was on a large number of medications which weren’t working. When it came to my pain issues, my baseline was a seven on the scale. I would end the day at an 8 or 9, hardly able to move because of how much pain I was in. I was miserable. My family was unhappy. I felt like I was failing them. I was in and out of the ER because of uncontrollable pain. Doc M spent almost three hours with me on that first visit. He heard me out, really listening to what my problems were. When I was done, he looked at me and said, “That’s a load of bullshit. There is no reason your pain should be so poorly controlled. We are going to get it under control. You and I will work together until we find something that works.” He kept his word. It took us ten months to find the right treatment protocol, but we did. Since I started that protocol in May 2017, I have felt better than I have in years. His plan has kept my baseline at a four on the pain scale. It has been over a year since I went into the ER for uncontrollable pain. I now spend around 85% of my time at a three/four on the pain scale. Doc M gave me my life back. He gave my kids back their mom and my husband back his wife. I will forever be grateful to him.

4. My Tribe. I have lost friends, who couldn’t understand or cope with my medical issues. However, I have a core group of friends, who have stayed true through it all. I am blessed with some of the best friends a woman could ask for. They never complain if I have to cancel our plans last minute because I woke up hurting too sick to go out. They listen to me whine on the bad days. They are also the first to celebrate the good days with me. Over the years, they have watched the boys while I went to doctors. They have driven to my house in the wee hours of the morning to watch the kids while Mark took me to the ER. They have taken me to the ER. They have brought me meals and helped clean my house. I am blessed to call these women my friends and sisters. My life wouldn’t be nearly as great without them.  There are two ladies in my tribe, who deserve individual shout-outs. They make up blessings 5 and 6.

5. The first is Annie, the woman I trust to raise my children if anything should ever happen to  Mark and I. Our friendship started over a bowl of ice-cream, the night before my wedding. In 2012, she put her life on hold for almost six weeks and flew out to help with the boys while I recovered from the spinal fusion. I don’t know what we would have done without her.

6. The second shout-out goes to Katie, my soul-sister. I met Katie after our last move. We were introduced through a church playgroup. Afterward, I went home and looked her up on social media. She had the most fantastic profile picture, and I decided I had to become friends with her. It didn’t take long for her and me to figure out we were a match made in friendship heaven. We’re two peas in a pod, clearly split up at birth. It would take to long to count the abundance of blessings Katie brings to my life, but her friendship is essential to my well-being.

7.  I have excellent health insurance, which covers my multitude of specialist, my physical therapy, and all of my medications. Unlike, many people with chronic illnesses, I don’t have to worry about being able to afford my medical care. That makes me blessed beyond measure. This single fact means I don’t ever have to worry about being able to see my doctors when I need to. It means I don’t have to worry if I can afford my medication each month.

8. Financial security. My husband has a good job, which provides a good life for us. We have a roof over our head, plenty of food in the fridge. (Though it’s pretty bare at the moment, I need to break down and go grocery shopping!) I am blessed I can grocery shopping without having to worry about money. I know I can afford to feed my family healthy and also splurge on special occasions like birthdays. I can clothe my family. All of our bills are paid on time.  For someone, who grew up without financial security, it means the world to have it.

9. Being able to homeschool my boys. I have been homeschooling my boys, since Paul started kindergarten, six years ago. Several of my boys have special educational needs between learning disabilities and speech delays. I count myself very lucky that I can homeschool them. They thrive in a way they wouldn’t be able to in the public school system. I get to stay home, supervising their education myself. I can make sure they are getting the best education they possibly can.

10. My doctors. Over the past year, I have assembled an amazing team of specialist doctors. They are working together as a team to manage all of my health issues. For the first time, every single one of my health issues is being handled well. The doctors realize that all of my health issues are interconnected. They can’t isolate them. They have to look at the whole picture.

The above list is my top ten blessings. I have many more blessings, but these ten are the most important ones. My life is filled with a multitude of doctor appointments and treatments. I may hurt every single day of my life. However, I am blessed beyond measure. I have an incredible life despite my challenges, one that I wouldn’t give up for anything, not even if giving it up meant being perfectly healthy.

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.



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.)

A Long Overdue Update on my Health

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I am happy to give a long overdue update on my health. I am currently feeling better than I have in a long time; however, I am still having some symptoms that need to be managed. As I mentioned in the last blog post, I have been working with an endocrinologist and an internal medicine doctor. They have both been amazing. For the first time in forever, I have a team of doctors, who are looking at my health as a whole and that has lead us to some answers. Some of the answers are good and some of them are bad.

Starting with the good news:

-The positive Lupus blood test turned out to be a false positive caused by my Rheumatoid Arthritis.

-I am no longer suffering from severe chronic tachycardia (elevated heart rate). One of my medications turned out to be the culprit. My doctors and I worked together to wean me off of it. As soon as I came off the medication entirely, the tachycardia went away. I have been tachycardia free for four whole months!

-The treatment plan, my doctors and I have put together, is managing my pain well. My baseline is a four on the pain scale. After years of living with a benchmark of seven, I never believed we would have my pain so well managed.

Now on to the bad news.

-The testing came back on my thyroid, and I am in the beginning stages of either Hashimoto’s Thyroiditis or Graves disease. They are both autoimmune diseases which affect the thyroid. We will not know which one I have until it progresses further. In the beginning, they have the same appearance on ultrasounds.

-My body is still struggling to process and store vitamins and minerals correctly. This is especially true when it comes to vitamin D, vitamin B-12, and Iron. My doctor has put me on a vitamin D and B-12 supplements. While he would like me on an iron supplement, I have a history of not tolerating them well. So, we are holding off at this time. If my iron levels fall much further, we will have no choice but to supplement, regardless of how sick the iron makes me.

-My cholesterol levels are mildly elevated, which is a new symptom that has presented in the last eight weeks.

-I have developed a sun sensitivity.

My immune system is going haywire. My doctor believes that I am suffering from polypharmacy. Essentially, all of the medications that I am taking to treatment (aka be a functioning person) my pain conditions are wreaking havoc on my immune system. We have reduced my medication load as much as possible. Having done that, we are trying to treat my symptoms using a combination of diet and lifestyle changes. Hopefully, by making these changes, we will see improvement in the symptoms and possibly reverse some of the damage to my immune system.

Regardless, of what new curve balls life throws at us, we continue onward. We keep trucking along and making the best of everything. I refused to allow my pain to beat me and I refuse to let these autoimmune issues beat me. My family needs me, and I refuse to fail them.

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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Reclaiming Joy

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Advent and Christmas are my favorite time of the year, or it used to be. Three years ago, my father died on December 6, the Feast of St. Nicholas. It was my favorite celebration in the season of Advent, marking the start of the Advent/Christmas season in my home. We always celebrated the feast day in style. St. Nicholas would come to visit the night of December 5th. He filled Christmas stockings for the children to find in the morning. Over the course of the day, we would read books about St. Nicholas, watch movies about him, talk about him, do activities, and spend time in prayer. In the evening, we would have company come over to share a meal with us. I would prepare a big feast with traditional Dutch foods such as Runderlappen. It was always a beautiful day.

That was until my father died. I received the call that he had passed in the wee hours on the morning of December 6, 2014. He was battling terminal lung cancer and had entered hospice care the previous day. However, I never imaged he would pass so quickly. We didn’t celebrate St. Nicholas’ Day that year. The boys received their stockings, only because they had already been laid out the night before. I spent the day laying in bed, alternating between crying and sleeping. Mark canceled dinner.

For the next two years, we didn’t celebrate the Feast of St. Nicholas beyond stockings. I just didn’t have it in me. 2016 was terrible, I had one of the worse chronic pain flares of my life, and ended up in the ER. After that, I mostly gave up celebrating. I was furious with my dad for having the audacity to die on one of my favorite saint’s feast day. (Which I know is unreasonable on my part.) I didn’t know how I would ever reclaim the joy of St. Nicholas Day.

This year my oldest two sons’ expressed that they missed our St. Nicholas celebrations. They wanted more than just stockings. I had no clue how I was going to pull off a happy day of fun. How do you reclaim joy from death? Losing my father devastated me, I had no clue how I was supposed to come back from that.

However, somehow I had to find a way. I turned to prayer. I spent the two weeks from Thanksgiving to December 6, praying. I prayed for joy. I prayed for the ability to live in the moment. As an insurance policy, I called some friends and invited them to dinner, knowing I would feel bad if I canceled. I may have also done a little retail therapy in preparation for the day. Stockings sort of overflowed this year.

stockingsHowever, I did manage to pull off our traditional St. Nicholas Day celebration, for the first time since my father died. We read several books about him, including a new one. We watched the CCC of America movie, Nicholas: The Boy Who Became Santa. (All their titles are amazing, and I highly recommend them.) We spent time in prayer and talking about everything we had to be grateful for. Lastly, I cooked a terrific meal of twice baked potatoes, Runderlappen, corn, salad, and rolls. Our friends brought Speculatius cookies. Everyone ate and laughed. The children played. The adults visited. At the end of the night, as I was tucking in my oldest son he told me, “Mommy, I am so glad we celebrated like we use too. Thank you for putting aside your sadness to be my mommy and make the celebration happen,” those words cemented the joy I worked so hard to reclaim. It will help ensure that I can find joy year after year on December 6th. I will always mourn my dad, but now I know I can miss him and still celebrate St. Nicholas Day with my family.

Here is a list of some of our very favorite books about St. Nicholas.

If you want to learn more about St. Nicholas and how to celebrate his feast day check out the St. Nicholas Center.