Hope Everlasting

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Happy Easter, everyone!

It’s SPRING. Flowers are beginning to bloom. Winter has come to an end. It’s the season of wedding bells and pregnancy announcements, with graduation right around the corner. Excitement and nerves displayed together in the bright-eyed faces of people with even brighter futures within their gaze. It’s the time of year when we celebrate Christ’s resurrection, family, love, joy, and new beginnings. As I scroll through my social media accounts, I see picture after picture of beautiful smiling faces – friends and families, parents and kids, all dressed up; toddling beauties in floral dresses and hair bows, little boys squirming in slacks and button-down shirts, generations of friends and family – brought together to celebrate new life. Easter egg hunts, cookouts and church services, followed by Sunday lunch and afternoon naps; it’s a day filled with joy because of hope and new beginnings.

However, the reflection on life and celebration of new beginnings is also exactly why holidays like Easter, Christmas, and New Year’s are HARD for those living with chronic illnesses. It’s extremely difficult to avoid playing the comparison game, when you feel frozen in time, especially on a day when the focus is “new beginnings.” I often find myself stuck dwelling on the life I used to have or the life I expected I’d have, because facing the one I’m living now is frightening and painful. When you have a chronic illness, typically the only new beginnings in your life are “starting a new treatment” or “starting a new medication” or “seeing a new doctor.” Rarely, do I get to talk about and celebrate the things the majority of my friends and family are celebrating, the things I want more than anything for myself, like “starting a career” or “starting a family”. While I’m truly overjoyed for my friends and family who aren’t struggling in the same way I am, it’s still painful.

This year, you won’t see a “Happy Easter from the Laymans!” photo, not because we didn’t want to take one, but because I was too sick and in too much pain to make it out of bed, or even to change the tshirt and sweats I’ve been in for several days. (How’s that for honesty?!) I wanted so badly to make it to church this morning with my husband. I love to join in the joy and energy, radiant and abundant, around family and friends with smiling faces and hope in their eyes. Even while my own future is up in the air, I truly crave celebrating the new beginnings of the people I love; yet, the fact that my own dreams are on hold is always in the back of my mind, tugging on my heartstrings. I don’t know when or if I’ll have children to dress, tiny hands to hold, noses to wipe, and little bodies to hustle out the door for church on Sunday mornings. I don’t know when or if I’ll ever bring home another paycheck or a diploma or a plane ticket to a destination that doesn’t involve treatment or medical care. If I’m honest, my heart breaks every time I yearn for the normalcy I used to expect from life. It’s even more difficult to think about when I’m laying in bed, alone, with the curtains drawn and tears in my eyes, from the physical pain that overwhelms me.

It’s so easy to feel stuck in the darkness and uncertainty of NOW, but Easter is more than a day of celebrating new beginnings. Easter is a day about celebrating our HOPE of the joy to COME, and no one hopes quite like a *spoonie. Naturally, those who feel broken and stuck and lost in suffering, must crave the possibility of joy through the hope for a better tomorrow, far more desperately than anyone in comfort possibly could. It’s true that I have no guarantee that I’ll ever be healthier than I am today, or that I’ll ever be more active, more energetic, or more independent. I have no guarantee that I’ll ever be well enough to pursue my dreams of graduating from college, working, motherhood, writing, traveling, or simply teaching classes at church. Yet, I still cling to the hope that the next treatment might bring me one step closer to fulfilling those dreams. More than anything, I hope that God would be able to work through me; and I know He can, He hasn’t stopped. It’s that hope because of grace that drives me to open my eyes every morning, and start the day with joy in my heart, and a smile on my face.

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Furthermore, I know that even if I never see the day when my health is restored, I have a hope that is far more important and more powerful than any plans or expectations I hold for my life on Earth. I know without a doubt that Jesus died and rose from the dead, so that I could have an everlasting HOPE for the future. I know that my savior is coming back again. I know that He promised me that someday I’ll be in Heaven with Him, and all the suffering I’m experiencing now will be less than a distant memory. I’ll never cry from pain, fear, or despair ever again. I will be FREE from all the chains and limitations that bind me here on Earth. Don’t believe that Easter is a day meant for those to celebrate life NOW, but instead, realize that Easter is the day we celebrate the joy we have BECAUSE of our HOPE of what is YET to COME, because Jesus died to free of us from the sin that held us back from closeness with God. Jesus’ resurrection means far more to those with nothing, whose spirits are renewed, whose hearts are filled with joy, because of the hope we have for life in Heaven! It certainly means more to me now, laying in bed, hurting, too sick to move, than it ever could when I was healthy. I cling to hope more fervently now than I ever did before my illness. I’m so thankful for new beginnings, but beyond that, I’m thankful for the HOPE of new beginnings! I’m thankful for the transformation that hope caused in my life.

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When Mary came to Jesus’ tomb, days after His death on the cross, it was in despair, darkness, and in the midst of the most desperate grief and mourning. She found the stone had been rolled away, the tomb was empty, because Jesus had risen from the dead! He overcame death itself to bring us LIFE. Easter is a day meant especially for the downtrodden, the hurting, the grieving, the lost. Today is the day we celebrate a time when those without hope received it. If you’re hurting – whether it’s because of illness, loss, poverty, loneliness, depression, fear, anger, or any struggles in life – today is the day to REJOICE. Because of Christ, we have HOPE for a better tomorrow. When we place our trust and our hope in God, when we confess our sins, declare Him as our Savior, and are baptized into Christ… that joy becomes OURS. Nothing can steal my joy or my hope, because hope in the Lord is unbreakable. Today, I celebrate with immeasurable joy, even in spite of my illness, because I have a promise, a purpose, and a passion, that makes all the suffering in the world WORTH IT.

Happy Easter! 🎉🙌

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John 11:25-26
Jesus said to her, “I am the resurrection and the life. He who believes in me will live, even though he dies; and whoever lives and believes in me will never die. (NIV)

1 Peter 1:3
Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead… (NIV)

1 Corinthians 15:19 If in Christ we have hope in this life only, we are of all people most to be pitied.

2 Corinthians 4:16-18 So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

Matthew 28:1-10
After the Sabbath, at dawn on the first day of the week, Mary Magdalene and the other Mary went to look at the tomb. There was a violent earthquake, for an angel of the Lord came down from heaven and, going to the tomb, rolled back the stone and sat on it. His appearance was like lightning, and his clothes were white as snow. The guards were so afraid of him that they shook and became like dead men.

The angel said to the women, “Do not be afraid, for I know that you are looking for Jesus, who was crucified. He is not here; he has risen, just as he said. Come and see the place where he lay. Then go quickly and tell his disciples: ‘He has risen from the dead and is going ahead of you into Galilee. There you will see him.’ Now I have told you.”

So the women hurried away from the tomb, afraid yet filled with joy, and ran to tell his disciples. Suddenly Jesus met them. “Greetings,” he said. They came to him, clasped his feet and worshiped him. Then Jesus said to them, “Do not be afraid. Go and tell my brothers to go to Galilee; there they will see me.” (NIV)

 

* Spoonie is a term for someone suffering from a chronic illness. Google “The Spoon Theory” by Christine Miserandino

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Smiling in the Trenches

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Okay, this is really interesting. The picture above is of a randomly thrown together collage of my “happiest moments” made by a computer generator on Facebook (via meaww.com). Not taking the claim very seriously, I decided to click the link anyway, out of curiosity, just to see what appeared. Isn’t it interesting that some of my “happiest moments”, as deemed by this silly collage generator, are also some I would consider my absolute toughest?

In this collage, you can see: a picture from before and after a medical procedure I had to have because of my illness, a picture of my service dog and I in the hospital after my invasive abdominal surgery in September, a picture of my husband kissing me as I sit in the wheelchair my severe chronic illness left me in, a photo of my parents and I clinging to one another, smiling, as we reflect on a courageous, joyful, Godly woman we consider family who we lost a few weeks ago. Of course, there are also several other less apparently somber snapshots involved: one of Sean and I on my 25th birthday, making the absolute best of a low-key day spent at home, because I was too weak to go out, one of an anniversary involving a rare trip to the movie theater with my husband. One of a selfie the first day I was able to put on makeup and change out of my pjs months after surgery. There are also a few pictures from a day of pampering I spent getting my hair done. I admit, my trip to the salon also happened to be incredibly exhausting and even painful for me; however much I loved every minute of feeling social and well-groomed again, my disability virtually invisible to the other clients.

My point in bringing this up is to say that sometimes to the casual social media acquaintance, a few glances at a photo or two of me smiling indicates happiness, satisfaction, comfort, and leisure; however, in reality, I may be fighting my own epic battles, overcoming worries, heartache, and pain to create the smiling moment in the photograph.

The truth is that most people are similarly battling to overcome the same odds in one form or another to reach their own happy moments. In a society that LOVES to compare and label, let’s not forget that too often we are comparing our REALITY to someone else’s HIGHLIGHT REEL. In so doing, we underestimate the struggles and challenges others face simply because we make judgments based on a snippet. It paralyzes us from making genuine connections with others.

I love that this random collection of photos from my highlight reel (so to speak) were placed in this collage because it provided an opportunity to explain their significance, their deeper meaning. When you get a chance to see the deep, the impactful, the obstacles, and the triumphs, and you reach the part of someone’s life where the heartache and joy become all mixed together – thats the part of the picture, the story, that’s truly beautiful. Now, you appreciate that in order to achieve my moments of happiness, I have overcome my demons. I fought against the ceaseless pain, illness, hopelessness, depression and fear, and embraced a spirit of hope, joy and courage. I found happiness in Jesus that allowed me to SMILE and shine, even if only for a moment before I returned to the trenches.

Look for that depth in your peers. Look for that relatability  when you scroll through highlight after highlight on social media. When you find the core, the humanity, CELEBRATE IT. It’s not often we connect like that. What a beautiful thing.

NOT ENOUGH: Beauty for Ashes

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Asking for extra prayers as I write this tonight. I get discouraged sometimes and feel a bit overwhelmed with this disease. I’m only human, after all. I am thankful for my God who has stayed with me every step of this journey. He is always good and always faithful. I’m so thankful for all my friends, family and prayer warriors. I’m thankful for a husband who never asks more of me than I’m able to give, who loves me where I am, who is my sunshine in the darkness, my shoulder to cry on when I’m heartbroken and when I’m in too much pain to hold back the tears. I am so thankful for all the things I still CAN DO in a sea of things I can’t.

The daily grind of trying to get traction on my illness is taxing. I work really hard to get out of bed in the mornings, taking meds, doing IVs, doing blood filtration, injections, emotional healing through counseling, prayer, seeing this doctor and that one and this specialist and that – trying anything and everything that I can to fight my illness and to build my body up. It’s not easy. It’s exhausting. I can barely bathe or change my clothes or make it from one room to the next sometimes. I work so hard and see little progress, but I have to celebrate all the little victories, even when my heart wants so much MORE.

I spend what energy I have getting through each day, making it out of bed, going to do treatments, holding on to hope, and I end up with very little energy left for the things I really WANT to be doing – like spending time with friends and family, going to church, going to any social activities, getting to be the spiritual leader I want to be, being the independent silly ambitious person I was before I was so sick, but I just CAN’T. I HATE THAT. I want to be so much MORE than I am.

I have to remind myself that it’s the voice of the enemy that shouts “not good enough” “worthless” “failure”. It’s the voice of God who whispers so gently that I can barely hear him, saying, “REST. RELAX. YOU ARE LOVED. Keep hoping, keep DREAMING. I KNOW your pain and suffering, and all I want is your heart and your trust and your love.” Nothing else matters. I can’t describe the heartbreak that this adventure has been and continues to be, but I trust that God will make beauty out of these ashes just as He always has done. I hope you are able to recognize the same in your own life and painful, discouraging moments. Thank you for encouragement, prayers and love! ❤️️

Isaiah 61:3 “and provide for those who grieve in Zion– to bestow on them a crown of beauty instead of ashes, the oil of joy instead of mourning, and a garment of praise instead of a spirit of despair. They will be called oaks of righteousness, a planting of the LORD for the display of his splendor.”

Alyssa Explains It All: Herxheimer Edition

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Hello everyone!! Most of you know that I created a Facebook page (Pray for Victoria) in support of my sweet friend and fellow Lyme-fighter, Victoria. She recently had a serious surgery to correct an issue with her heart the Lyme had caused. Lately, Victoria has mentioned that the antibiotics she’s taking to help get rid of a chest infection are causing her to herx. I knew there were probably a lot of friends and family of Victoria and ALSO of mine out there who don’t know what “herxing” entails, so since I also battle severe Late Stage Lyme Disease, I thought I would take some time to explain it for you!

A Herxheimer Reaction occurs when someone with Lyme Disease is taking a medication like an antibiotic, a natural antibiotic, or doing any treatment that acts as a protocol that can kill Lyme bacteria. When Lyme bacteria dies, it releases a large amount of intense and dangerous toxins that cause the body to respond drastically. The body is flooded with toxins much faster than it is able to detox and expel the toxins from the body. Many people with Late Stage Lyme Disease also have an inability to detox much in the first place so herx reactions are even more severe and longer-lasting for them (I’m one of those people and Victoria probably is, also!) Most people experience a drastic increase in severity of ALL of their Lyme symptoms and may even experience new symptoms. A Herx can look similar in many ways to what a cancer patient experiences as a result of Chemotherapy.

A herx for me typically includes – severe migraines, body aches and severe joint swelling and pain, nausea/vomiting, light and sound sensitivity, fever (both traditional fever with chills but also hot fevers where I cannot cool myself down), hot and cold sweats, tremors, muscle aches, burning and spasms, severe sore throat or throat infection, flare of my costochondritis involving rib pain, swelling and inflammation and ribs out of place, Raynauds flare (where my sensitivity in my hands/fingers to heat but especially to cold causes discoloration of my fingers and intense pain), more severe POTS (my resting heart rate increases and when I stand my heart rate skyrockets, blood pressure drops, and my body kicks into hyperventilation; my legs will also break out in a splotchy circulatory rash and itch and burn unless I sit down; If I stand too long- more than a few minutes- I will pass out), floaters in my vision and intense eye pain, severe GERD or Acid Reflux, worsened stomach symptoms including intestinal pain and spasms, slower digestion (and absorption of food, nutrients and even medications taken orally) constipation, diarrhea, bloating, stomach pain and spasms, increased pain and symptom flare from interstitial cystitis (the autoimmune condition involving the inflammation and bleeding of the bladder walls), increased sensitivity to chemicals, allergens, fragrances, severe Mast Cell Activation (when the mast cells in my body are over-produced and over-active causing rare systemic allergic reaction which reveals itself in episodes very similar to seizures), not to mention LESS ENERGY and MORE PAIN OVERALL! When I Herx I cannot leave my house and can barely sit up or walk around.

Those are just some of the symptoms I (Alyssa) experience when I have a herx reaction. Victoria shares a lot of these symptoms with me, but there are many that I experience that she and other Lyme-fighters may not experience and many that others experience that I don’t. A Herx reaction can last a few days or a few weeks or even a few months.

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Little things can cause a Herx reaction. For example, I am unable to stand in the shower and I cannot wash my hair in the shower anymore either. Partly because of my fainting issue (POTS), and my low energy level, but also largely due to the fact that the heat and steam from even a warm shower elevates my body temperature just enough for me to experience some Lyme bacteria die-off and cause a small Herx reaction! Even a hot day or a warm shower may cause a Herx.

It’s natural to think, “Well, if some of the bacteria are dying off, isn’t that a good thing??” The truth is yes, it’s a good thing when we can kill off some of the bacteria; HOWEVER, if we experience a severe Herx that means there are too many toxins being released too quickly so that the body cannot keep up. If that person is able to detox well or even partially well, their body will be able to pull the toxins out eventually and remove them from the body. Yay! BUT if that person cannot detox the toxins from the body it could cause them to be sicker in general long term. Battling Lyme Disease is a very tricky thing! It’s hard to be excited about killing the bacteria when you know what will come next and have to worry whether or not your body can handle it!

Sometimes our bodies are not in a good position to handle the overflow of toxins, but we have no choice but to take an antibiotic because of another infection or issue. That’s the situation my friend Victoria is in right now! Her body is not in a good place to be able to process the toxins from Lyme die-off because she is still weak and her body is expending its resources on healing from surgery, but the infection in her chest is dangerous and must be treated with antibiotics (that antibiotic is capable of killing Lyme, not all of them are), and thus, she is feeling absolutely awful.

SO, please please please keep praying hard for my friend, Victoria!

-Pray that her body can detox and process the toxins being released by the Lyme bacteria die-off.

-Pray that the antibiotic takes care of the infection in her chest that is causing so much pain and coughing.

-Pray that this Herx reaction does not last long.

-Pray that Victoria is able to continue to heal and to get some much-needed rest!

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Also, if I may be so bold as to ask, please continue to pray for me.

-Pray for my poor aching body as I recover from hosting Sean’s sweet youth group for a Christmas party at our house last night. (I enjoyed it SO MUCH!)

-Pray that I do well as I travel next weekend to visit family for the holidays.

-Pray that I continue to heal from my own surgery back in September and that God guides us to big things on the horizon.

Thank you all SO MUCH for your encouragement and prayers for Victoria AND FOR ME!! It means so much! We pray for and thank God for each and every one of you.

– Alyssa

“It’s Not Over Yet”

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Tonight I got a phone call from my sister-in-law Paige who was driving and listening to Air One radio station when she heard the band “for King & Country” discussing their song, “It’s Not Over Yet”. The brothers/band-mates explained that their younger sister suffers from chronic Lyme Disease, the same disease because of which Victoria (my friend I’ve been requesting prayers for) and I and countless others across the world suffer and fight. Their sister’s battle with Lyme Disease was the inspiration for their song! Lyme is a complicated and controversial disease that is not very well-known or well-respected which adds to the feelings of frustration and isolation we experience because of it. I am SO thankful for the friends (like Victoria) and so many others out there that I’ve met along the way, friends who also suffer from Lyme and provide a sense of companionship and understanding that we crave. God has been SO GOOD in bringing us together, people from all over the world who have kindred spirits and warrior hearts!

Even when we feel like we’re lost with no direction and we don’t know where to turn next because of this disease, we hear God whisper to us over and over through you, our friends and family, through music and especially through scripture, “I have plans for your life. You have great purpose in me. Continue to place your hope and your trust in me. Hang on, because I will take what Satan meant for evil and use it for your good! I will teach you true contentment, joy, peace and love; and I will use your struggle for my glory! Someday you will be in Heaven with me where there will be NO MORE PAIN and NO MORE DISEASE! Don’t give up because it’s not over yet.”

The brothers wrote the song “It’s Not Over Yet” to encourage their little sister because there had been some extremely tough moments in her battle with Lyme, moments when she suffered so greatly and had lost so much of her life that she felt she had lost her purpose here on Earth. She felt so discouraged. That is a feeling that I can relate to and I know Victoria can and many of you others who are fellow Lyme-fighters or who have struggled with other illnesses, setbacks and struggles in life. My sister was so excited to call and tell me that I now have a song written specifically about battling Lyme Disease that I can rock out to and allow it to be one of my anthems to keep me going when life with Lyme Disease gets hard! Tears filled my eyes when I listened to the song for the first time while understanding the meaning and intent behind the lyrics, and I was SO ENCOURAGED. I hope you will feel the same way when you listen to the song and the story behind it!

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Thank you SO MUCH for praying for me over the years as I continue to fight and for praying for my sweet friend Victoria as she underwent heart surgery today! Please continue to pray for her recovery and healing after this surgery. It won’t be an easy road and she will need encouragement and prayers of comfort and peace during this season as well. Please continue to pray over the doctors and nurses who care for her and for her parents John and Teresa and brother Landon. Pray that Victoria is in less pain and that she tolerates her medications and their side effects well. THANK YOU SO MUCH for coming on this journey with us, praying and trusting, hoping and crying, celebrating and praising. It is such a beautiful thing to see you unite in spirit and lift Victoria up! I feel the same way when I feel you lifting me and my husband and family up as well. I know from my own experience how much it truly means to feel like you’re not alone, and be reassured that people love you and that they are going to fight alongside you and go the Father on your behalf! You are BLESSINGS!

Here is a link to the video of the brothers explaining the meaning of the song and why they wrote it!

And here is a link to the actual song so you can have a listen! I’ve also posted the lyrics below! God bless you all!

“It’s Not Over Yet”
for King & Country

They are inside your head
You got a voice that says
You won’t get past this one
You won’t win your freedom

It’s like a constant war
And you want to settle that score
But you’re bruised and beaten
And you feel defeated

This goes out to the heaviest heart

[Chorus:]
Oh, to everyone who’s hit their limit
It’s not over yet
It’s not over ye-et
And even when you think you’re finished
It’s not over yet
It’s not over ye-et

Keep on fighting
Out of the dark
Into the light
It’s not over
Hope is rising
Never give in
Never give up
It’s not over

Yea-et-et, woah
Yea-et-et, woah

Oh, game set match
It’s time to put it in your past, oh
Feel the winter leavin’
It’s redemption season
Long live the young at heart (Here we are)
Cheers to a brand new start (Here we are)
We’re revived and breathing
To live a life of freedom

[Chorus:]
Oh, to everyone who’s hit their limit
It’s not over yet
It’s not over ye-et
And even when you think you’re finished
It’s not over yet
It’s not over ye-et

Life is a race we run
So run till the race is won
Don’t you ever give up (Here we are)
Oh no never give up (Here we are)
Life is a race we run
So run till the race is won
Don’t you ever give up (Here we are)
We will never give up (Here we are)

[Chorus:]
Oh, to everyone who’s hit their limit
And even when you think you’re finished
It’s not over yet
Oh, to everyone who’s hit their limit
It’s not over yet
It’s not over ye-et
And even when you think you’re finished
It’s not over yet
It’s not over ye-et

Keep on fighting
Out of the dark
Into the light
It’s not over
Hope is rising
Never give in
Never give up
It’s not over

Yea-et-et, woah
Yea-et-et, woah
Yea-et-et, woah
Yea-et-et, woah

– Love to all!

Alyssa

#Blessed

give thanks in every season

Well it’s already time to say goodbye to November!! I can’t believe how fast time goes by. This month I have been working extra hard on my attitude. Positivity, hope and gratitude are extremely powerful spiritual tools – why do you think Satan tries so hard to take them away from us?! Truth be told, I have had a lot of ups and downs the last few months, some moments of great strength, peace and clarity and a lot of moments of depression, anxiety and panic. No matter how bad things get or how weak and limited I am physically, I still have an immeasurable amount for which to be grateful!

I’m not perfect, and so I can’t expect myself to be perfect; however, I can always open my heart to God, continue to grow and become so much more than who I was before. Good things surround me just as good things are ahead of me so I refuse to let Satan steal my joy! This month is known as THE month to practice gratitude, but I want to challenge you as I’m challenging myself to make a habit of having a triumphant and thankful spirit year round. Let’s not only be thankful this month and the next, but daily and in a much more profound way than going down the list of blessings. Let’s look for ways to see and be grateful for God in places we haven’t been before. Let’s strive to see him working in the dark, the bleak and the seemingly empty. Let’s choose peace and gratitude in our most vulnerable moments instead of worry and fear.

Something that I’ve learned through my chronic disease story is that my idea of blessings as an American Christian aren’t always the way God wants us to see blessings. It’s so easy for us to get caught up thinking that when life is comfortable and our path feels easy and smooth that that means we are blessed; so then when we meet challenges and struggles, heartbreak, loss, poverty, cruelty and hard times we immediately think – wait, WHERE is God?! What happened to the blessings and promises?! I know I’ve had some tough moments when I had to look those thoughts in the eye and label them as lies because those beliefs that used to give me security instead made me feel like my life was turned completely upside down. I realized that if I continued looking at God and understanding the concept of blessings the same way I had been, then it would mean that I also believed that God was choosing to let some of his believers suffer more than others, that he favored some believers more than others with no reason as to why. I realized that if I allowed myself to continue with a faith like that then I would become far more like the Pharisees than I ever would be like Jesus.

The Pharisees were always looking for an explanation and a reason for why a person suffered, just like sometimes we do, and so also did Jesus’ disciples in the following passage:

John 9:1-11 “1As he went along, he saw a man blind from birth. 2His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”
3“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him. 4As long as it is day, we must do the works of him who sent me. Night is coming, when no one can work.5While I am in the world, I am the light of the world.” 6After saying this, he spit on the ground, made some mud with the saliva, and put it on the man’s eyes. 7“Go,” he told him, “wash in the Pool of Siloam”(this word means “Sent”). So the man went and washed, and came home seeing. 8His neighbors and those who had formerly seen him begging asked, “Isn’t this the same man who used to sit and beg?” 9Some claimed that he was. Others said, “No, he only looks like him.” But he himself insisted, “I am the man.” 10“How then were your eyes opened?” they asked. 11He replied, “The man they call Jesus made some mud and put it on my eyes. He told me to go to Siloam and wash. So I went and washed, and then I could see.”

Jesus’ followers asked him, what did this man or his parents to do to cause him to suffer like this? Thus, also implying “we” must have done something right because we don’t suffer as he does. Just like the Pharisees there were times when even Jesus’ own disciples were looking for a reason to feel more important, more prideful, more justified in a legalistic faith which is actually nothing like Jesus! I want to live as far away from that spiritual logic as I can! I want to look at my hardships and my suffering and be able to thank God for getting me through them, trust Him with His plans for my life, and hope in the power of Jesus’ name to make beauty out of the bleak.

While I thought I believed that God loves his comfortable wealthy American Christians just as much as he loves his poor, suffering, struggling Christians in my country, or those in other areas of the world like Honduras or Nicaragua, Ghana or Cambodia, I later realized that I really didn’t have a clue what I believed. I thought – yes, of course, God loves us the same, but when confronted with my beliefs I felt he decided to bless us over here MORE; I didn’t know why, and most of the time I don’t think that I even knew or understood that deep down I actually believed that I was somehow more important than someone who suffered more than I did. Now, I KNOW God blessed the poor and the downtrodden the same if not more so than he blessed the wealthy, healthy and comfortable. Should we be thankful for our Earthly possessions, our health, family and comforts – YES, we should absolutely be thankful, BUT I also no longer look at blessings in the same way or with the same limitations that I did before.

what if your blessings

My promise as a follower of Christ was not for an easy, pain-free life. My blessing was not to be kept from suffering. In fact, I now believe if I’m too comfortable, I’m probably not pushing myself to grow and to work for God’s kingdom as much as he really wants. I discovered that my blessings were so much bigger, and worth so much more than simply a roof over my head, clothes on my back and food on the table – my blessing and my promise is JESUS. I think to truly understand who Jesus is we are expected to suffer. We are promised a hard road. No, I don’t have a Savior who magically erases my pain and illness, though he certainly could. Instead, I have a Savior who understands my suffering and pain. I have a Savior who suffers with me, beside me every step of the way. I have a Savior who could have called ten thousand angels, but instead died in complete agony on a cross, let Satan think he was winning, and then came back to show me that God’s love conquers death and sin and suffering at its most powerful and horrible. My blessings are contentment in pain and hardship through learning to rely on the Lord. My blessings are peace that surpasses understanding and a spirit of praise when others might collapse in despair (and sometimes I do collapse, and Jesus understands that, too).

I have a close relationship with a God who understands what it feels like to lose a child, to give a perfect child to die in order to save those like me who fail him daily. My blessing is that I have been promised that I can overcome any darkness in my life because I have victory in Jesus. My blessing is that I know that there is nothing men or Satan can do to me here on Earth to take away or cast even the smallest shadow on my joy in Heaven. I know that when I make it there, there will be no more pain, no more tears, and no more suffering. There will be no more chronic pain, no more Lyme Disease, no more cancer, no more AIDS. I know that Heaven’s glory will so greatly eclipse anything difficult I experience on Earth!

My blessing is freedom, not just freedom from darkness or pain, but the ability to live and love freely and without fear because my promises and blessings are so much bigger than life and especially far more powerful than my mistakes, sin or even death itself. I have a Savior who gives me the tools to live in such a way that he can take my most painful days and teach me how to learn from them, grow through them, and come out stronger and more full of joy and strength I can share with others. It’s amazing!! And I hope you can agree that it’s far more meaningful and valuable to be blessed with eternal life and a Savior who understands the pain we go through and who meets us where we are, than to live every day on Earth in comfort, safety and security, which without Jesus is absolutely meaningless!

When we’re at our lowest, Jesus does the most for us, and we receive our most cherished and valuable blessings. From now on, I want to be just as thankful for the tough times, the struggles and challenges and storms as I am for the moments of smooth sailing. I absolutely encourage you to do the same. Step out of your “blessings” that provide meaningless comfort, and instead look for Jesus in the dark, among the broken and suffering because that’s where he’s needed and where he shines the brightest, and y’all, that same truth holds for us. If you really want to be the hands and feet of Jesus, seek out the lost and hopeless and love them like Jesus does, not because he’s the Son of God who is all powerful and perfect, but because he’s the Son of God who walked humbly and suffers with us, the Savior who provides us with the tools to transform sorrow into joy and weakness into strength.

always be joyful

I want to take a moment and say THANK YOU to all of you for going through this journey with me. Thank you for reading my blog posts, for praying for me and for encouraging me when I need it the most. There are no words to express how much it means to me! I want to ask you to continue praying for me, but also to pray for my sweet friend and fellow Lyme fighter Victoria Wilguess as she goes into a major 10+ hour long heart surgery in the morning.

Y’all are awesome! Please know that I pray for each and every one of you! Keep getting out there, finding those who are sick and hurting like myself and loving us like Jesus. Truly, there are no words to describe the ways God comforts me through all of you!

1 Thessalonians 5:16-18 “Rejoice always, pray without ceasing,  give thanks in all circumstances; for this is God’s will for you in Christ Jesus.”

If you haven’t heard Laura Story’s song “Blessings” yet, I encourage you to check it out! I’ve posted the lyrics below because I think they’re really powerful and inspirational!

“Blessings” by Laura Story

We pray for blessings, we pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
And all the while, You hear each spoken need
Yet love us way too much to give us lesser things

‘Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom, Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your word is not enough
And all the while, You hear each desperate plea
And long that we’d have faith to believe

‘Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not,
This is not our home
It’s not our home

‘Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You’re near

What if my greatest disappointments or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise.

 

I LOVE MY NEW DOCTOR!!!

Good Things

Thank you everyone who saw my Facebook post yesterday and to those who didn’t but were already sending thoughts and prayers my way anyway as the wonder team (Mom, Charlie and I) went to my appointment with a new doctor yesterday. The doctor was so sweet, and before we began, she asked me to tell her about myself as a person (apart from my illness). She wanted to know a little about ME, the human being and not just the patient. That felt so good because I don’t get to talk about what I love, what I’m passionate about, what made me happy before I was so sick and what my plans are if and when I become higher functioning in the future very often and especially not often with doctors! Before we entered her office, there was a sheet we filled out as part of my paperwork that listed a ton of potential symptoms, and then asked to rate the symptoms from 0 – 4 (1-occurs occasionally and is not severe, 2 – occasionally and severe, 3 – frequently but not severe, 4 – frequently and severe) and then tally up the total. She said that I am the highest totaled patient she’s ever had and she sees a lot of very sick patients with all sorts of illnesses including cancer. She said the severity of illness I experience is not common in the slightest and living with it is unbelievably difficult. She wanted me to know how remarkable it is that I am who I am in spite of it. She told me she wanted to take a second before we got into all the medical stuff and just honor me for everything I’ve been through at such a young age and for my positive and resilient spirit and faith in God. Mom and I both teared up. Y’all, it meant so much to me to know she was looking at me with love and compassion as a person and not just as a patient!

We started discussing all the medical details and going down the lists of symptoms, onset and diagnoses and over the loooong list of doctors I’ve seen. Mom handed her our thick folder full of test and lab results and she spent time looking through them. To our delight, this doctor has so much more collective knowledge about my illnesses than many I’ve seen. She has a lot of additional tests and labs in mind she wants to run to provide even more information, and she has referred me to several other awesome doctors who are also on the cutting edge of their fields and are ahead of their time. One of them is a GI (gastrointestinal) doctor in Edmond who will do scopes (endoscopy/colonoscopy) and take biopsies to check for indication of mast cell systemic allergy issues in my digestive tract. Most people would probably be less than enthused about having their insides scoped, this will be my third or maybe fourth time at age 25; however, I’m actually SO EXCITED about this! The doctor can identify the presence of Mast Cells which he believes are a major key to severe Leaky Gut and can actually contribute significantly to Gastroparesis. We suspect Mast Cell issues are also the cause of the episodes I have that we thought might be seizures. We could then find a medication or treatment to help get those under control, and in turn it will help with my digestion and absorption of nutrients, help with my Gastroparesis and make it far easier for us to treat my other conditions. That is HUGE.

I’m also going to be doing extensive genetic testing that my geneticist and my new doctor recommended so we can learn even more about my methylation defect, my EDS and other issues. She’s going to test my histamine levels and mold exposure, as well. She knows A LOT more than most doctors about rare and poorly understood conditions like EDS, POTS, Mast Cell, Gastroparesis, Lyme and more, and new ways to look at and treat them AND she’s right here in town! It was also encouraging that she knew who the majority of my current and previous doctors are and thought highly of them and their different approaches and information we gained from them. She also recommended a few other doctors – one who is using a unique approach to treating Lyme and another who knows a TON about immunology as it’s related to my conditions. Furthermore, she has a few Lyme patients who went to Germany for treatment and are doing significantly better. She’s going to find out more about what they did and where they went and pass it on to us! Germany has been on our minds and in our prayers as a future treatment location for me so it was exciting to get another confirmation of that. She also recommended new medications and supplements for me to try that she has found to be successful for similar patients which is also exciting.

Honestly, it’s not often that we walk out of a doctor’s office feeling not only heard and loved, but also with our arms full of options and possibilities! To sweeten things even more, she LOVED Charlie and Charlie loved her! I place value in who clicks with Charlie because he has such an intuitive soul. She was petting him often and talked to him a lot, and even showed us pictures of her own dog who was a rescue (you know that touches my heart!) When we left the office she wanted to hold Charlie’s leash, walk him out and even took him over to the grass for us in case he needed to go potty before we headed home! That’s a FIRST, and we were thrilled.

Thank you to all who prayed over my appointment, my doctor and for my awesome support system. For most people, going to the doctor is a boring simple task, but for us, it can be really scary. So much rests on how my appointments go; we never know if doctors will understand or validate what we’ve learned, if they will be kind and interested in helping me, if they will have any new suggestions or ideas to help me, or if they will laugh in our faces and send me out the door in tears (that’s happened more often than I care to admit). This doctor is already a huge blessing to me! I love the way God works – the way He put this doctor in our path through my sweet home health nurse Cindy, and especially the way He has held and guided me through every painful step of my chronic disease story.

We view my journey to wellness as a puzzle; every doctor we’ve met has given us a piece. Sometimes it takes awhile to feel out the edges, turn the pieces around in our hands, step back and reexamine the big picture and know where to place them, but no matter how small they seem, we know they each matter. There are a lot of times when the pieces don’t fit yet, so we hold on to them and wait for the right moment to come. God puts some pretty amazing things together, so even though there’s still a long way to go, and even though some doors we think I’m meant to go through close at the last minute, we know without a doubt He hears us. He has big plans for my life even when I can’t see or understand them. The lessons I’ve learned along the way and the emotional and spiritual healing have been tremendous and so valuable. His timing is perfect so I’m continuing to trust in that! I’ll keep you posted as we move forward with this doctor, testing and forming a game plan! Today, we are feeling very grateful and we would be thrilled if you would join us in some prayers of praise and Thanksgiving.

Alyssa

Alyssa Update 2.0

Sean and Terri here again,…WE ARE FREE!  We have escaped the compounds of the hospital and are back in the apartment.  To be real, while sometimes things were hard and a struggle with this surgery (balancing and overcoming the effects of necessary narcotics was rough!) and  although a few of the doctors and staff made things difficult, there were certain people who were really helpful and supportive. So on that note, we want to put a big thank you out there to the majority of our nurses! Most of them advocated for us, really listened to what we said and were some of the sweetest people you could meet, especially one named “Zori.”  Zori if you read this, we thank you from the bottom of our hearts, you are the best and we love you and how hard you worked at taking care of Alyssa.

We are planning to fly out Friday at 3pm eastern time and will be back in Tulsa that night! We are so ready to be back home and back in our comfort zone. The next big hurdle we have is getting home. Flying is incredibly hard on Alyssa; on the way to DC we gave her anti-nausea meds, ice packs on her forehead and neck, and had her smelling peppermint and other essential oils. So trying to contain her nausea and her pain levels while flying are our biggest concerns for returning home. (Charlie is a great flyer by the way!)

We truly appreciate the prayers and messages we have received from so many of you. They have uplifted and encouraged us so much!  God heard your calling and has answered. As mentioned in the last post, Alyssa should hopefully start seeing results in two weeks from the 9th but we wouldn’t be surprised if with her slow healing it doesn’t take a few weeks longer. We are hoping for improvements with her POTS and circulatory system overall even though it may not be as likely as the main focus of this surgery which was restoring blood flow to her celiac artery and stomach.

IMG_4889(Charlie looking out the plane window)

So we ask that you continue to pray; pray for the trip home, pray that Alyssa’s incisions will heal well and fully, pray that the surgery effects will be fast, pray that the surgery will provide the additional needed benefits, pray with thankfulness that the initial surgery went well, pray with thankfulness for the nurses we had in recovery, pray with thankfulness for Dr. Kane who performed this surgery on Alyssa, and lastly praise God for providing all of this for us. You guys are all loved by us, we thank you and pray for you as well.

Alyssa’s Hospital Update

Hey guys, this is Sean and Terri. Alyssa’s surgery went really well, and hopefully she should start experiencing a difference in her gastroparesis in about 2 weeks, which we hope will allow her to really be able to eat more foods again and actually digest what she eats. Yay! But it’s been a very interesting time after Alyssa’s surgery. The night after was one awful night. Alyssa was in so much pain and was throwing up all night long. I cannot imagine what that feels like after surgery (on a pain scale 10 out of 10). The next day she finally started rebounding from the surgery and her IV medications began kicking in. We had some pretty decent days where we were excited about how good she felt (she was at a 7 out of 10 mostly, a normal day for her pain scale is a 5-6), until we started weaning her off of the IV medications. She was doing alright at first, a little up and down but we were usually able to get her back on track with the occasional IV medication (whether pain related or nausea related). Then today the surgical team, without warning, took her off the IV meds just as Alyssa crashed really hard and had the worst migraine of her life. Her pain spiked (10 out of 10) and so did her nausea which only seems to increase her pain. The doctors don’t seem to understand how bad her gastroparesis is, that the pills seem to be staying in her stomach for 3-4 hours before they begin kicking in and when they do kick in they don’t seem to last long or be powerful enough because her body isn’t absorbing all the medication, only some of it. We are still in the process of persisting in getting sublingual or transdermal pain medication that will more quickly absorb in her system and ensure pain relief when out of the hospital and on the trip home.  Meanwhile, she is determined to fight through without the IV pain meds.

IMG_4981

Through all this pain and ups and downs, Alyssa has been such a fighter.  She has constantly been a joy and uplifting presence to us, the doctors, and the nurses, and we hope we have been the same for her. Even though at times it seems the doctors don’t listen or that the meds aren’t working, Alyssa has constantly put her trust in God and has depended on Him wholeheartedly. God is good; He is with us and even through pain and struggles, He provides. We are all so grateful for the faithful prayer warriors battling with us in so many prayers offered on Alyssa’s behalf!  Keep praying!

The Best View

Thankful

Over the last few days, in the midst of breakdowns over the grief of the possibility of future children and nerves about surgery, I had to stop for a few minutes and be overwhelmingly thankful for all the blessings God has put in my life and the many answered prayers. For Sean and me, 2015 has been the best year yet. Yes, it’s been difficult in ways we cannot put into words, but we can also clearly see God guiding our path and giving us the wisdom to recognize His guidance, our growth and His will for us. I want to list some of the huge blessings of our year so far in hopes that you can celebrate the victories with me!

***(This is a long post so please BEAR WITH ME! There are some medical explanations some of you have been asking about and will be looking for, everyone else feel free to skim those parts! I’m flying to Washington DC tomorrow and having surgery on Wednesday the 9th so be praying for that and look for updates!)***

As most all of you know, I’ve been extremely sick with chronic Lyme and all its additional conditions for over three years now; However, what many people DON’T know is that I wasn’t healthy for most of my life even before that fateful day when I got two teeny indistinguishable tick bites. As a child, I never had a strong immune system. I always had odd issues that came and went. I would pass out at an amusement park on a hot day or at church camp every year when we went on a long hike. I got itchy when I stood in lines. I had trouble breathing and was diagnosed with asthma. I couldn’t run very far because my heart would pound and my head would throb and I would gasp for air. I was clumsy and had poor balance and frequent mildly sprained wrists and ankles. My bladder would become inflamed and irritated and I would make frequent bathroom stops. My joints were always a little sore and stiff and popped when I moved. My heart would race inexplicably. I had a slowly expanding list of food intolerance, bloating and upset stomach often and severely. I caught strep throat frequently. I had numerous “mono-like viruses” that left me weak and lethargic. I had migraines and chronic sinus problems. It was annoying and frustrating, but not huge. It didn’t keep me from functioning, and when it did it didn’t last too long. I would go to the doctor like anyone else and get some sort of explanation or none at all and keep going.

Things worsened after I graduated from high school. I had horrible, debilitating stomach problems all through college, some days to the extent that I couldn’t eat anything and was in and out of the bathroom so often I had to miss class or run out in the middle. I was struggling so hard to juggle my schoolwork, my social life and my declining health, but because of insecurity I didn’t feel like I could tell my professors or my friends how bad it was or that I was experiencing it at all. I had increasingly severe bladder pain and was diagnosed with interstitial cystitis, chronic inflammation of the bladder. My gallbladder stopped functioning and I had surgery to have it removed in hopes that my stomach problems would lessen, but instead it only made things worse. I had these odd aches and pains and a slew of things that puzzled my doctors, but being an active stubborn girl, it was nothing I considered as major, so I ignored them and pressed on as best I could. The summer after Sean and I were married, I got the two little bites that changed nothing and yet changed absolutely everything. It was a fast-paced nightmare with symptoms worsening and new issues popping up left and right over a few months until I was left where I am today – out of school, out of work, in a wheelchair when I leave the house, in constant excruciating pain, floundering for answers.

The years of odd health issues and especially the last three of extreme illness have been more difficult than words can say. My faith was rocked, my relationships and beliefs of myself and my perspective of the world challenged in every possible way. I’ve doubted, grieved, sobbed and felt completely and entirely broken, but friends, God does beautiful things with brokenness;The person I've become that’s one of my favorite things among many about my God and savior, and I am living proof! I wouldn’t change my story or go back to the person I was before this experience because I have learned and grown in a million ways that I cherish. I know without a doubt that God is holding Sean, Charlie, our family and I, and making his path for us clear with each step. We trust him wholeheartedly. We have always looked for signs of His presence and His blessings throughout this journey, but this year especially they have been EVERYWHERE!

Early this year, God directed me on the path to finding a new doctor in Dallas, Dr. Suleman. He was able to explain to us the heart racing, difficulty breathing, exercise intolerance, AND stomach problems I have dealt with for as long as I can remember. He did what all the doctors I’ve seen could not. He diagnosed me (HERE COMES THE MEDICAL JARGON, YOU’VE BEEN WARNED!) with severe POTS (Postural Orthostatic Tachycardia Syndrome), Gastroparesis, and MALS (Median Arcuate Ligament Syndrome). POTS causes my heart to race and my blood pressure to drop when I go from laying to sitting and especially when I stand. It causes vertigo, dizziness, fainting, hyperventilation, and is the reason why my legs get splotchy and itch like crazy until I sit down and put them up. The mottled itchy legs are my body’s way of warning me of the changes in heart rate and blood pressure and forcing me to sit down before I pass out. One of the things I have been the most annoyed with for the last three years, I’m actually extremely grateful for now. How cool are our bodies? POTS causes poor circulation and many patients also have Gastroparesis, which is stomach paralysis that causes reflux, bloating, nausea, constipation/dairrhea, upset stomach and food intolerance. Median Arcuate Ligament Syndrome is a rare congenital birth-defect that we learned means that my median ligament in the abdomen that is supposed to run parallel to the celiac artery was malformed across the artery and is severely restricting blood-flow through my celiac artery; in turn, the ligament restricts blood flow to my stomach, intestines, liver and kidneys. It causes severe reflux, nausea, intense pain, bloating, constipation/diarrhea, food intolerance, and worsens the POTS and Gastroparesis.

For those of you who are mainly healthy, it may be hard to understand how a diagnosis can be good news or something that you crave, but when you go years and years of your life seeing doctor after doctor without understanding why your body does what it does, it can be such a relief to finally have a reason and an explanation that makes sense. When I got all of that information in February-March of this year, we were overwhelmed but thrilled. We knew that information would be very important in our journey to get me healthy and functioning again.

Back in March around the time we learned all of my new diagnoses, Sean and I were happily living in our little apartment on campus at Oklahoma Christian University where he worked as a Resident Director for three years. We had plans to stay there for at least two or three more years because we were comfortable, and Sean had the ability to be home and take care of me most of the year; and when he couldn’t, he and my parents met halfway between Edmond and Tulsa and I stayed with them. I went back and forth a lot for doctors’ appointments in Tulsa and for my service dog (my biggest blessing of 2014) Charlie’s lessons with his amazing trainers at Spirit Ranch, also in Tulsa. One day, we both received a message from a friend telling us about an open youth and family ministry position at the Crosstown Church of Christ in Tulsa. Sean has a youth ministry degree and The best time to celebratewe both grew up in the Tulsa area at churches that are very similar in heart to Crosstown. We both immediately felt an overwhelming sense of conviction that Sean should apply for the job he wasn’t even seeking. A few short months later, Sean was hired for the job, and a week or two after that we had packed up and moved in with my parents in my hometown of Bixby in south Tulsa. It has been a whirlwind of a summer, but Sean absolutely LOVES his new job, the kids in his youth group and the congregation as a whole. We have been so wholeheartedly welcomed and embraced and immediately felt at home with our new church family. I have never felt more instantaneous love, support and understanding for my chronic illness, and words cannot describe what a blessing it is to be at Crosstown! On top of that, Sean and I are living TOGETHER full-time since our first few months of marriage. WE LOVE IT! We had no clue what God was putting together for us and it blows us away. His plans are greater than mine.

Over this crazy summer, my POTS doctor, Dr. Suleman also directed us toward an excellent geneticist/doctor who recently clinically diagnosed me with EDS (Ehlers-Danlos Syndrome), (CAUTION: MEDICAL JARGON AHEAD) a connective tissue disorder which explains my clumsiness, joint issues including popping, inflammation and hyper-mobility, sensitive skin that bruises and scars easily, slow-healing, skin rashes, difficulty swallowing, fatigue, poor immune system, GERD (reflux), Post-Nasal Drip and sinus issues, and is the reason why I suffer from POTS, Gastroparesis and MALS. It’s even the answer to my spells which we thought could be seizures. They’re actually caused by something called Mast-Cell Reaction which is a type of rare systemic allergic reaction causing the throat to swell, trouble swallowing, trouble speaking, inability to focus, loss of control of limbs, rashes, etc. In the process of me seeing Dr. Suleman, my little sister Ashlyn saw the same doctor and geneticist and was also diagnosed with POTS, Gastroparesis and EDS which explains a lot of the symptoms that she has been experiencing in the last several years especially. That is HUGE because we want as much information as we can get so that she can function better and keep from becoming a severe case with other conditions like me. The geneticist is going to do extensive blood work on me and my parents which will test thousands and thousands of genes to find even more answers for us.  After that we will know what genetic issues that my sister will need to be tested for as well. Again, probably seems like a weird thing to be excited about, but yes, we most definitely are!

In a matter of months, we found a new job and a new family, moved to Tulsa, AND I finally received an explanation for nearly all of the odd and painful issues I’ve dealt with since I was a little girl, and that information is indescribably VALUABLE. It will be crucial in helping us find a way to get me back to functioning at a much higher level, part of which will involve surgery to clip and remove my median ligament from around my celiac artery; another thing that makes 2015 a huge year for Sean and me. Dr. Suleman directed us to a surgeon in Washington D.C. who is one of the best in the nation at performing this rare procedure laparoscopically. We had plans to have my surgery done here in Tulsa, but the two excellent surgeons who we planned would work together would likely end up having to perform open surgery which would involve an incision from my sternum to my pubic bone. The surgery has never been done laparoscopically in Oklahoma before and the chance that the surgeons would have to open me up is extremely high. Dr. Suleman cautioned us against an open surgery because of his now-confirmed suspicion that I had a connective tissue disorder, EDS. Thank goodness we heeded his advice because as aforementioned I was just diagnosed with Ehlers-Danlos Syndrome a few weeks ago, and it’s highly likely because of my EDS that an incision that large would not heal and would stay open for months causing complications and a much greater risk of infection.

The surgeon in DC is excellent and has had a very low complication rate which gives us confidence even though it’s always scary to fly with me so sick and to be in a hospital hundreds of thousands of miles away from family and friends; however, we feel confident that God led us to this surgeon for a reason! I trust that no matter what happens, God is holding me and I will be okay. One thing I’ve learned from chronic pain and suffering is that time flies even when you’re not having fun. That can be a hard realityCast all your anxiety to face as the time you desperately want to use for the many goals, plans and dreams you have for your life slips by you; and yet, it’s also a blessing because I know that even my hardest of days will be over soon enough and that gives me strength to persevere. We will be flying to Washington DC TOMORROW September 6th, meeting with the anesthesiologist and surgeon in person for the first time on the 8th and my surgery will be on the 9th, so please be praying and sending good vibes my way on those days! I have to arrive at the hospital at 5:30 am the day of surgery which is EARLY for me. The surgery will begin at 7:30 am and should last somewhere between 3 and 4 hours. We anticipate flying home on the 18th. The surgery should restore blood flow through the celiac artery to my stomach, intestines, liver and kidneys which hopefully will boost my immune system, digestive system, lessen my Gastroparesis and pain, aid in my overall circulation and maybe even help with my POTS as well. If I’m able to digest and use the nutrients from my food, supplements and medications at a much higher rate than before, hopefully we should have better luck treating my Lyme and boosting my body as a whole which would be HUGE. This surgery is a scary thing, but an equally if not even more exciting one so be praying fervently over it.

My surgery isn’t the only exciting thing happening for us this fall! Sean and his brother Chase have been working hard on an original board game called Rivals: Masters of the Deep for a long time now. Countless hours have gone into brainstorming, test-play, and all the additional plans Rivalsinvolved in bringing this game to life. They have added and improved so many aspects of the game and further developed their plans for it to be funded through Kickstarter, an online fund-raising website. Supporters will be able to go online and read about the game, pledge money to the project and pre-order a copy of the game along with a lot of opportunities for additional perks with additional money pledged. The Rivals Kickstarter will relaunch bigger and better soon so please keep an eye out for that! It’s going to be awesome!

Also, I am excited to announce that on September 30, 2015 we are scheduled to close on our FIRST HOME! It’s a cozy house in Bixby, just a few minutes down the road from my parents’ house (which will be wonderful as they help us out so much, and HomeI stay with my parents whenever Sean is busy). It’s in a gated neighborhood which makes us feel safe and comfortable, and we can’t wait to move in and get settled! Even better is the fact that the sellers are a couple that we know so we have been even more excited and comfortable going through the daunting process of buying our first home because they’ve been so great. Those of you who know me will realize that I can’t wait to get settled and comfy in our house in the fall, and then… DECORATE OUR HOME FOR CHRISTMAS!!!!

So far, 2015 has been a year of huge blessings and answers to prayer for us, none of which we saw coming or had planned for ourselves. My hope is that you will rejoice with us and join us in prayers of thanksgiving and anticipation for all the big and Something will growexciting changes in our lives so far and those ahead of us and for everything we have learned along the way. Change is exhilarating but also scary; yet, we know that whether the twists and turns in our lives are positive or negative, our Father’s plans for us are elaborately laid out before us, and those plans are bigger and more extraordinary than any we could possibly create for ourselves. Take hope and courage today in the love God has for you. Know that he loves you and that his son died so that you could have life and have it more abundantly. Trust and obey Jesus’ teachings because in your faith in all circumstances you will find hope and joy overflowing. It’s absolutely breath-taking and I couldn’t be more thankful.

Scriptures for today:

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.”

‭‭Jeremiah‬ ‭29:11-13‬ ‭NIV‬‬

“Those who heard Jesus use this illustration didn’t understand what he meant, so he explained it to them: “I tell you the truth, I am the gate for the sheep. All who came before me were thieves and robbers. But the true sheep did not listen to them. Yes, I am the gate. Those who come in through me will be saved. They will come and go freely and will find good pastures. The thief’s purpose is to steal and kill and destroy. My purpose is to give them a rich and satisfying life.”

‭‭John‬ ‭10:6-10‬ ‭NLT‬‬

“Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.”

‭‭Romans‬ ‭5:1-5‬ ‭ESV‬‬

“I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.”

‭‭Romans‬ ‭8:18‬ ‭NIV‬‬

“In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God. And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”

‭‭Romans‬ ‭8:26-28‬ ‭NIV‬‬

The best view

Sean and my mom will be trying to post updates during and after my surgery so be on the lookout for those. I’m thankful for you!

Blessings!