Saturday, July 30, 2016

Fighting Fibromyalgia

For the last 6 years, I have been having health issues. This is not something I often discuss in depth here on my blog for a couple reasons: I don't want to seem like I'm trying to get others to feel sorry for me and I don't want to seem like I have just resigned myself to dealing with this and that I have no hope for healing. However, I want to share for a few reasons that outweigh the reasons not to share: to ask for prayer, for others to know they are not alone, and to hopefully give people a greater understanding of chronic pain conditions.

Shortly after giving birth to Lily in 2010, I started getting severe pinched nerves in my back and neck (as well as general pain in those areas), which would leave me bed-ridden for days at a time. I went to a chiropractor, got regular massages, and went to physical therapy, but nothing seemed to help much. I even got an MRI to make sure there was nothing wrong.

Then, in the late summer/early fall of 2011, when I was 21/22, I felt extremely ill and literally wondered if I was dying. I had multiple troubling symptoms. I went to Ellerslie for my Basic Semester that fall and was ill the entire time. It didn't help that I wasn't getting much rest. Someone there who has a nursing background told me when I got home I should get tested for Mononucleosis (also known as Epstein-Barr Virus or EBV), so I did in December 2011. The results came back positive. I had no idea that I had been battling Mono all those months and needing rest. I always assumed Mono is something teenagers get. All my symptoms started making sense... the extreme fatigue, swollen glands, sore throat, difficulty breathing, a general unwell feeling, etc. People thought I was being lazy, but I knew that it wasn't that. The Mono diagnosis helped make me feel validated and I was relieved to know I wasn't dying, even if it felt like I was.

I assumed that the Mono would go away. I had wanted to go back to Ellerslie for the Advanced Semester in January 2012, but was too sick for that, which was a big disappointment. Month after month went by, and I still felt so tired and ill. My immune system was all out of whack.

Year after year went by and my health did not improve. As time went on, the pain has become chronic and widespread throughout my body. That and the extreme fatigue have felt crippling.

I went to multiple doctors trying to find a diagnosis to explain what was going on with my body. Because I look young and healthy, I was made to feel by others that I was being dramatic and that it was all "in my head." I knew that the things I was feeling were real and that I was not making it up. I know what it feels like to feel healthy and strong. I ran cross-country and track for years and though it feels like a distant memory now, I remember how wonderful my body felt then. Just because someone looks young and healthy doesn't mean they do not feel as badly as they do. There are many people living with invisible illnesses.

After multiple doctor visits and referrals, blood tests, and research, it was determined that I have Fibromyalgia. What is Fibromyalgia? In short, it's "a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and tenderness." There are many other symptoms that can occur with it (for more on it, a simple Google search will bring up a plethora of information).

What is difficult about the Fibromyalgia diagnosis is that there is no blood test to confirm it. It is diagnosed based on symptoms and ruling out other possibilities with mirroring symptoms. This can leave one feeling isolated and misunderstood. I wish at times that I had proof of this for people to understand this is real and not imagined.

I was relieved to know that I didn't have something life-threatening. But how was I supposed to approach Fibromyalgia and how in the world did I get it? It has been a difficult thing to grapple with. As the years have passed, it has become harder to face as I always assumed I would get better soon. I never thought I would be someone who struggles with chronic pain. One resounding thought I've had is, "I'm too young for this."

Fibromyalgia is estimated to affect around 5 million Americans ages 18 and up. It is most common in women (around 90 percent of those affected), and is especially found in those of child-bearing age. There are still a lot of unknowns about Fibromyalgia.

In my research, I have discovered that Fibromyalgia is oftentimes triggered by emotional trauma and/or a virus such as Mono. I obviously have had both. It seems like the Mono never really went away, but morphed into Fibromyalgia.

I am sharing all of this, not to dwell on the Fibromyalgia or have a pity-party, but rather to give the background so others can understand what is going on and how it started.

It has always made sense to me that the Fibromyalgia would be triggered by emotional or physical trauma to the body. All parts of us are connected - the physical, emotional, and spiritual parts, and therefore when one or more parts are wounded, it only makes sense that it would impact us as a whole.

The Lord confirmed this for me when I recently read an article that Dannah Gresh shared. She writes about a study that was done that shows how physical and emotional pain activate the same parts of the brain: "Not only do both physical pain and a break-up both hurt, but they share a common somatosensory representation as well. That means what is happening in the brain during functional MRI (fMRI) scans look much the same whether there's physical pain or the emotional pain of a break-up. How do we know? Researchers headed to the city of broken hearts: the Big Apple. No problem finding jilted lovers there. The broken hearted were stuffed into an MRI scanner and given two stimuli: a nice dose of thermal pain on their hands and a photo of their EX. (Control groups were offered what seemed the same treatment to create thermal pain, but instead of chemicals they got neutral non-irritants. No physical pain.) Didn't matter which kind of physical pain they'd experienced (or hadn't), when the brain saw that photo of the EX it started to behave like...well, like a cup of hot coffee had just been spilled! The new research offers startling possible links between a romantic break-up and long-term physical pain disorders such as Fibromyalgia)."

It makes sense why I developed Fibromyalgia... the emotional pain I have experienced activated it. Unplanned pregnancy in itself is difficult, and a regretted and grieved abortion, the loss of my precious Lily, a full-term pregnancy and birth (which can impact women differently), and the severing of my relationship with Lily's father. All of these things on top of each other and happening in a short amount of time triggered the Fibro, coupled with the Mono basically pushing things over the edge. These things have taken a physical toll on me and the pain settled into my bones.

The Fibromyalgia has impacted my life in many different ways... I battle fears of the future, wondering about working and how I'll carry a pregnancy to term again one day. I wonder about how I'll feel on certain days when I have plans, because I can have better days than others. I wonder if my back will give out, the most unpleasant thing I experience, because it's scary and I never know when and if it'll happen. What if it happens while I'm traveling or with people who don't understand what's going on? I don't want to be a burden to others.

Exercise is extremely painful and difficult for me, and some days getting the energy to do much of anything is hard. I keep thinking about how wonderful it felt to run hard and fast, how free I felt. I truly took for granted feeling that way when I did. Now, I wish with all my heart I could exercise hard. I keep picturing myself running on a beach and praying that one day, I will be able to do that again.

Dannah Gresh says "the news is rather hopeless when you look at it purely scientifically. So let's not."

I think that's what is most important in this... that I recognize what is going on with my body, understand how it was triggered, and entrust my health into the Lord's hands. He knows what is going on, He understands it in a deeper way than any doctor could, and He cares more about my healing than I do. He alone can heal my heart, soul, and body.

It can be easy to feel discouraged, defeated, and depressed about my health, but instead of allowing those feelings to take over, I am choosing hope. I am turning to books and blogs of others who live with physical pain, such as the amazing Joni Eareckson Tada. I am reading testimonies of others who have been healed and set free from Fibromyalgia. And most importantly, I am memorizing Scripture to recite over and over again on the hard days...

My favorite right now is Psalm 73:26 - "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." My flesh is failing, my heart has been broken in many ways... BUT GOD, He and He alone is my strength.

"He heals the brokenhearted and binds up their wounds." -Psalm 147:3

"Bless the LORD, O my soul, and all that is within me, bless His holy name! Bless the LORD, O my soul, and forget not all His benefits, who forgives all your iniquity, who heals all your diseases, who redeems your life from the pit, who crowns you with steadfast love and mercy, who satisfies you with good so that your youth is renewed like the eagle's." -Psalm 103:1-5

"As for man, his days are like grass; he flourishes like a flower of the field; for the wind passes over it, and it is gone, and its place knows it no more. But the steadfast love of the Lord is from everlasting to everlasting on those who fear Him." -Psalm 103:15-17

Please pray for me, that the Lord would direct me in what to do to seek healing, however that looks (apart from the things I am already doing/pursuing). Pray that He will indeed heal me. Pray that I will cling to Him through this and learn to trust Him more through this.

J. I. Packer wrote "God uses chronic pain and weakness, along with other afflictions, as His chisel for sculpting our lives. Felt weakness deepens dependance on Christ for strength each day. The weaker we feel, the harder we lean."

I believe the Lord can heal me. I know that Fibromyalgia is not a life-sentence because Jesus is my Healer. I know that He can use even this to bring me closer to Himself. I know that God will give me the strength I need for what He has called me to.

For those with someone in their life who has an "invisible illness," please extend grace and compassion to them. It's no less real just because you cannot "see" it or relate.

And for those who are coping with and fighting Fibromyalgia or any other invisible illness, know you are not alone. Know that the Lord sees what you are going through and He is your Healer and Sustainer. Also, know I am here for you if you need someone to talk to and pray with.

I will end with a few quotes from a book that has been greatly ministering to me called "Seasons of Waiting" by Betsy Childs Howard:
The world stops feeling like a comfortable place when our bodies attack themselves. Even a minor sickness can remind us that our bodies are not permanent homes. When sickness enters our lives, we become keenly aware that our world is fallen. Our bodies are a gift from God, but as they age and get sick, they cause a lot of groaning. While sickness, like death, is a product of the fall and therefore not a good thing in itself, it has the good by-product of helping us to feel less at home in the world. When we aren't at home in our bodies, it reminds us that "our citizenship is in Heaven, and from it we await a Savior, the Lord Jesus Christ, who will transform our lowly body to be like His glorious body, by the power that enables Him even to subject all things to Himself" (Phil. 3:20-21). Illness is not something that we should embrace for its own sake, but we can celebrate the fact that it makes us long for our Heavenly Home and resurrected bodies.......
God does not always respond to prayers for healing in the same way. Sometimes He heals quickly, either through medicine or through miracles with no scientific explanation. Sometimes He heals after many months or years. Other times, God withholds healing... This is the kind of healing our bodies and souls long for, the touch of our Savior that instantly restores. That kind of healing brings glory to God because it shows His miraculous power. But God is also glorified when we continue to walk in faith though we have not been healed. Anyone would praise God for instantaneous healing; there's nothing supernatural about being glad for good health. But those who praise God in the midst of their suffering, even though He has not removed that suffering, show a kind of faith that can only be attributed to the Holy Spirit within them. It is not natural to give thanks and rejoice while being imprisoned in a groaning, aching body........
What does it mean to wait well when you long to be healed? Waiting well involves praying for healing and seeking a cure through medical means. It also means recognizing that God may have purposes for delaying that healing.......
As you wait, keep praying for healing, but pray also for God's strength to be perfected in your weakness as long as He withholds health. There is no body so broken that it cannot be offered to God as a living sacrifice, and there is no arm too feeble to wield the sword of the Spirit.

"But He said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong." -2 Corinthians 12:9-11


Thursday, July 28, 2016

Lily Remembered at Fort Macon State Park

Lily's name was written in the sand at the historical Fort Macon State Park in Atlantic Beach, North Carolina by my friend Lindy. She wrote her name beautifully and the added butterfly is sweet. 💕


Wednesday, July 27, 2016

Lily's Song with Video

I created a video I've wanted to make for a while. It's telling Lily's story through pictures, with her own unique song playing in the background. I of course have shared her song before, but not with photos accompanying it. At the beginning of the video is Lily's recorded heartbeat with a snippet of her ultrasound showing her precious and perfect heart beating. I hope you enjoy the video below (I've also included the lyrics page).

I also want to mention that if anyone would like a video in honor of their baby, I would be happy to create one for you and would treat your photos with the utmost respect. I have created a few videos for friends for their babies. You can email me at roseandherlily [at] gmail [dot] com if you're interested.

Sweet Lily, My Beautiful Girl <--- email subscribers click to watch


Written on My Heart

Recently my sister-in-law wrote Lily's and my Aunt Rachel's names in the sand at Atlantic Beach, NC. I asked her to also write the names of a few other friend's children who are also with Jesus. She was sweet to write the names and also thoughtfully took this lovely photo of many of the names lined up together. I find it so beautiful... all of your baby's names and stories that you've shared with me are forever written on my heart. Your babies are in my thoughts often. When I see a street sign with their name or something that you associate with them, I think of them with a smile. Your status as their mother is never forgotten by me. It's amazing how many precious babies I can hold in my heart all at once. I look forward to one day meeting and holding them in Heaven. ❤️


Adam and Joseph's Birthday

My brothers (Lily's uncles), Adam and Joseph, just turned 32 on July 24th (yes, they are twins... I also have twin aunts and have always wanted twins myself... hopefully one day!) I've loved having big bros and these guys are pretty great. 😊🎂🎁🎈🎉 


Monday, July 25, 2016

Little Flower Girl

I realized I never posted this blog entry from 2013 about when my brother Joseph and his wife (my best friend) Kala got married. Their wedding date was October 11th, 2013. And now here we are, nearly 3 years later, with a new member of the family... My precious niece, Harvest.

My family at their wedding (missing Lily) 

Lily gained an auntie. Kala knew it would be a tough day for me without Lily there, who would be 3 1/2, the perfect age to be a flower girl. She was thoughtful in the ways she chose to include Lily in the day...

For one thing, she didn't have a flower girl because she knew it would be too hard for me. She said that Lily was the "honorary flower girl." (Click here to read a post I wrote about my little flower girl).

They had a multi-layered tier cake and the top flavor was red-velvet, in honor of Lily. For those who don't know, each year on Lily's birthday, it is a tradition to have red-velvet cake in her honor. I had a Valentine's-themed baby shower and that's the cake we had there. Kala had wanted to put a lily on the table by the cake.

She also wanted my bouquet to have a white lily in it, as the maid of honor. My mom was going to wear a lily in her hair... but unfortunately, we couldn't get our hands on some lilies the day of the wedding. I also wanted to get lilies painted on my nails, but wasn't able to. It was a busy, busy day.

Though I wasn't able to do everything I hoped, the small gestures of how Lily was thought about and included helped ease the ache in my heart for my girl who won't ever be there for special family celebrations. I wish my little flower girl could have been there...

The day was beautiful. The wedding was held at a charming southern Bed & Breakfast in South Carolina.

The Lord blessed us with gorgeous weather for an outdoor Autumn wedding. There had been rain on the days before and after the wedding. The bride was breathtaking and Jesus was the central focus of the day.

Praying together before the Ceremony (and not wanting to see each other)

Bridesmaids praying with Kala before the Ceremony

Kneeling together at the cross, which was the backdrop for the Ceremony

What a neat idea :)

Joseph and Kala have a beautiful love story. After meeting when they were in middle school, the Lord scripted quite the story - ending with them getting married at ages 28 and 29.

With the lovely bride

With the thrilled groom

The Allen siblings

Kala and her dad arrived to the Ceremony in a horse-drawn 
carriage and Joseph and Kala left in the carriage

Cute Bumma at the wedding

Walking down the "aisle" ...wearing my pink pearls for my pure little girl.

The Ceremony

As part of the Ceremony, I was asked to read some Scripture aloud.

First kiss as husband and wife


The entire bridal party

The reception was held under a tent on the property

Joseph and Kala's first dance as a married couple at the Reception

Delicious southern food!

Southern Bluegrass

Dancing with his beloved grandmother at the Reception

Leaving the celebration as newlyweds!


Lily Remembered in Swanage

Lily's name was written in the sand in Swanage, which is in Dorset, England, by my friend Sophia who is "on holiday" there. 💕


Friday, July 22, 2016

Red-Velvet Cookies

My sweet friend Stacy sent me these in the mail, thinking of Lily. Red-velvet is a "Lily thing," for those who don't know. I had red-velvet cake at my Valentine's-themed baby shower and now have red-velvet something each year for her birthday. That was so sweet and thoughtful of Stacy. She said her kids were upset that she wouldn't let them eat the cookies. They kept bringing them to her and she said "No, those are for Lily's mom." Aww... It was a nice surprise to receive these (I love getting snail mail). It warms my heart to know red-velvet makes others think of Lily too. My family is happy too because I'm sharing the cookies with them haha. 😌❤️🍪🍪🍪 


Her Painted Name

Lily Katherine's name was beautifully painted in shades of pink by Jessica as a part of The Painted Name Project <--- follow link to make your request. 💕

She honors precious babies who are in Heaven by painting their names and praying for their mothers while she paints, sharing their stories, and sending the painted names via snail mail. It is such a beautiful ministry and I love her heart behind it... Acknowledging and celebrating life and that our children are seen, known, and loved by God. You can see the names Jessica has painted on her Instagram account.

This is what I shared about Lily's name for the project:

Since this project is about acknowledging our children by name and celebrating their lives, I want to share a bit of my daughter's story and the significance of her name... When I was 19/20, I had an unplanned pregnancy. In the first several weeks, the Lord connected my heart to my baby and revealed to me she was a little girl named Lily. There was never any question in my mind what her gender and name were. Lily means "pure and innocent." She was a symbol of my renewed purity and redemption in Christ. Her new life growing in my womb was a symbol and reflection of the new life God was cultivating within me. Her life was the instrument used to bring me new life. When I was selecting her middle name, I had no idea at the time that Katherine also means "pure and innocent." I knew that God was with me and had a beautiful purpose for the sweet baby girl He was knitting together in my womb, with her own unique name that He chose to reveal to me. Two days past my due date, on March 16, 2010, after a healthy pregnancy, I arrived at the hospital in labor. It was there I was told the life-altering words, "her heart is no longer beating." Lily's name took on an even deeper meaning... She will forever remain pure and innocent. I struggled with why God would let me walk that road, let me carry and love Lily so much, only to take her from me. But I rest in knowing it is all in His hands. I trusted Him with her life and now I trust Him with her legacy. She is an eternal flower, given as an eternal gift from an eternal God. And her legacy continues to blossom on this Earth.

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