A Prayer for a Life of Thanksgiving

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“How good it is to give thanks to the Eternal and to praise Your name with song, O Most High;  To speak of Your unfailing love in the morning and rehearse Your faithfulness as night begins to fall.” Psalm 91:1-2

Lord,

I adore You, how I love You. Cherishing who you are I offer worship from the depths of my soul to You. I treasure Your living  Word. Your beauty surpasses all words. Magnificent creator. Author of Salvation, through Your sacrifice beyond human comprehension You have brought me by Your blood, calling me Your beloved child. In You I  have everlasting life. You constantly poured out countless gifts beyond what I deserve, furthermore, far beyond what I deserve. All honor, glory, power, and praise belong to You now and forever more. Blessed be Your glorious name.

The to-do list dictates my time. My emotions wildly running dictate my reactions. My pain dictates my thoughts. I hurry- thought scattered- overwhelmed-depleted. Senselessly rushing another day without ever savoring a moment. Neglecting the gifts you have bestowed on me; I take so much for granted. I do not understand the depths of each gift and many I cannot see. Lord Jesus, have mercy. Forgive my ungrateful heart and lavish on me Your stunning grace.

Thank you from the depths of my soul for providing for me. I praise You for my relationship with You, Your Word, and Your character. Thank You for creatively and compassionately knitting me together and for the purpose You formed me for.  I praise You for this season of life. Thank you for investing in me, loving me, and forgiving me. I praise You for the blessings I neglect to see, those I am unable to understand, and the ones I have acknowledged, though not enough.

Enable me to slow down… to pause and reflect on Your goodness. Help me to recognize and say thank you for a few gifts. Fill me with thanksgiving every moment of every day. Let me live by Jesus’ example offering a gift of thanksgiving to You in the midst of unspeakable pain. Allow my thanksgiving to bring glory to Your holy name.

Amen

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Dysautonomia Awareness & Update

Happy Dysnamonia awareness month! If you are unfamiliar with Dysnamonia please check out my blog post Dysautonomia Awareness. There are at least 15 types of Dynamonia, with POTS being the most common.  A few others are Neurocardiogenic syncope, Multiple system atrophy, and Familial dysautonomia.

Postural Orthostatic Tachycardia Syndrome was not recognized until 1993. Beforehand, individuals with the illness were misdiagnosed many times with anxiety. It is thought that there are a group of individuals who outgrow POTS.

It can be challenging to stabilize an individual with dysautonomia. Without proper treatment, it significantly decreases an individuals quality of life. I received my POTS diagnosis three years ago. It has impacted my life in ways that I would have never guessed.

My POTS has been out of control from the start (it has been acting up majorly this month which is why this post is so late). We attempted a blood pressure medication, which I didn’t tolerate. Then we did a beta blocker. Next, we did IV fluids, which by the way has been the best treatment I have received. Then we went back to what I like to call live at your own risk till we come up with a new idea.

The typical go-to list of eating salt, compression stockings, drinking insane amounts of water, and pace yourself has not been enough for my body. Of course, I do my best with the non-medication list for POTS people. Yet, my blood pressure would bottom out a few times a day. The effects of this are anywhere from dizzy spells to chills to passing out to falling to tremors.

Needless to say live at your own risk hasn’t been going all that well. I find it dangerous for me and those around me find it scary. At this stage of my life, I don’t find passing out to be scary period. I am more frustrated with needing to slow down even more and the injuries that occur when I don’t have a warning.

I began seeing one of the few POTS specialists in my area about a month ago. A week ago I failed my second tilt table. I had been skeptical doing another tilt table on high doses of steroids but my body surprised me when I passed out ten minutes into the test. They took some blood work during the tilt table and once those results are in we will examine what options I have for a new medication.

In addition, he is thinking there could be a mast cell factor which is kinda extremely long to explain so that’ll be in another post. The doctor did mention, after my last fainting spell, that there could be an element of the heart slow

I find it amazing beyond words that all of my pets are able to figure out when I will have an episode. My cats will try to get me to sit down or get my walker. Abby, my service dog in training will alert me and then get my mom. I have spoken to several professionals and no one is certain how they pick up on it. But I am thankful. In general, with the four of them, I have had fewer falls. It is once in a blue moon that they miss it or I lay down and still pass out.

 

*Photos from the Dysnamonia foundation photo contest.

Thoughts of A Spoonie

My life is so different from those typical my age. I cherish all I am blessed with. However, there are times it is difficult watching people when I am out or on social media. Girls laughing at the mall without a care in the world. Not needing to think about passing out or taking medication. People going forward with life. Getting engaged. Getting married. Expecting children. In a way, I feel left out.

I came home from college and began a hard fight. Everyone else enjoyed friends and learning. I fought my body. Fought the pain. Fought just to stay alive. I have learned valuable lessons. I have begun serving in ministry. I wouldn’t trade these priceless blessing for anything. Yet some days I crave a normal life.

It is okay to be in between loving your life and grieving what never happened. It is to me a normal element of the spoonie young adult world. The emotions are hard to process at times, but my friend, you are doing an amazing job! Allow yourself to feel.

Move forward one moment at a time. Celebrate the small victories. Embrace each moment of joy. Thanks for stopping by.

20 Facts

20 Random Facts About Me: Chronic Illness Addition:

  1. I have been admitted to the hospital three times
  2. I know how to do self-injections
  3. My right arm is significantly longer than my left one
  4. My joints pop out of place a few times a day
  5. I am on my third dose of Remicade. It is making a difference already.
  6. I am hypermobile. I have learned this is more than I thought.
  7. I have three kidneys as well as chronic stones
  8. I have tremors or muscle spasms which are thought to be Dysautonomia related. They are painful as well as irritating.
  9.  Being chronically ill has altered my skin color.
  10. I have moon face.
  11. At times I stand or walk on the sides of my feet (it has gotten dramatically better with age)
  12. Currently, I am loving my stuffed dog that is microwaveable with a lavender scent. My twin friends, who are four from Chruch named him Cuddles. Anytime I am going out I heat it up and bring it with me. Excellent for joints or abdominal pain.
  13. I have developed sensitivities to bleach, laundry soap, dishwasher soap, and additional cleaning products. We use Seventh Generation and Lysol.
  14. I have had five surgeries
  15. I have applied for a service dog and have begun thinking about names.
  16. It is less painful to eat. Somedays I’m not hungry but then I just grab a drink if I need something like ensure.
  17. I get a butterfly rash and anxiety before extreme pain or a flare of symptoms.
  18. I use elbow crutches or a wheelchair at times
  19. I have had a concussion
  20. My cats help my anxiety

Happy Birthday

I have written creatively for as long as I could hold a pencil. These are two fairly old poems written in honor of my mom for her birthday, today. I could not have asked for or dreamed of a better mother. God has truly blessed me. She has been with me for every appointment, ER trip, urgent care trip, every test, and every surgery. Sh She is a huge encouragement and the source of strength. I am blessed that she introduced me to the Lord and raise me in a church. Thank you will never be enough. Happy Birthday, Mom!

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Fancy dresses princess messes

Twirling on toes

Bubbles to blow

Picking flowers as laughter showered

 

All part of the little girl I once was

Butterfly kisses before

Bedtime prayers

Daddy’s little girl

Mama’s little helper

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Innocent

Curious mind

Carefree girl in a perfect world

 

Even though times seems to fly

The years go by and by

Simply in a blink of an eye

Memories engraved are meant to last

Of the little girl, I once was

Spreading my wings I fly

Far way and so many things

But I’ll never forget the little girl I once was

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Dainty soft pink slippers twirling high on toes few doors remained closed life an open book

Tapping rhythm to a new song always found a safe place to belong never even had to look

Feels like just yesterday somehow it just faded away

Now I lay counting laughter and teardrops

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The whole world lay in my back yard the only attack needing to be dodged was by dragons

Only things exist are what we created, only innocents of the wild imagination

Exploring wonderland unplanned adventure in all kinds of weather

Feels like just yesterday somehow it just faded away

Now I lay counting laughter and teardrops

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The world seemed against me could not yank free from the chains, oh the lies being fed to me

Unknown sadness filled my eyes had no reason but no choice I had to cry

Feels like just yesterday somehow it just faded away

Now I lay counting laughter and teardrops

 

Finally, I belong; these memories blanket my soul uncovering things that were buried in that hole

Overwhelmed with agape to the point of speechlessness anointed with blessing

Feels like just yesterday somehow it just faded away

Now I lay counting laughter and teardrops

 

Oceans away miles apart I long for the peace covered in that place the ground covered in grace

It is how I escape all the troubles of the world love falling like rain soaking everyone in its embrace

Feels like just yesterday somehow it just faded away

Now I lay counting laughter and teardrops

 

Only pictures remind of the past, memories fade with rain cause we know they never truly last

Pain consumes every inch of my being prying me away from the life that once was

Learning to dance in the storm though I pray for life to return to the norm

Feels like just yesterday somehow it just faded away

Now I lay counting laughter and teardrops

 

mommyandme

“You love your parents, but as you get to know them you fall in love with them.” I believe this quote is absolutely true. As a child, our parents are heroes. As teenagers, we drift away from our parents. We are so consumed with our lives, we don’t take enough time to get to know our parents and cherish the small amount of time God lends them to us. I cherish the time I have with my parents.

Bittersweet Birthday

I had overheard people saying that old age caused pain. So, by the time I had chronic pain, about nine years old I thought it was I just a part of the aging process. At the same time, I wondered how everyone else was coping so well with the pain and mine was taking over. I felt extremely guilty for missing an excessive amount of school. It took some time for me to understand that children should not be in intense pain or pain all the time. Those people were indeed referring to elderly people. Who knew?

From a fairly young age, I associated growing up with having more pain. I am thankful to be alive. Especially in light of a handful of times, it was questionable if I would make it. Even so, my birthday is a little difficult emotionally.

It’s not just the physical pain. I tend to feel more isolated around my birthday. This is the time I notice that indeed I am not a typical young adult. The time I need to grieve the things I can no longer do. Time to grieve all I am missing out on.

The social clock is ticking obnoxiously. I can just hear people saying, “She is nearly twenty-three years old. She should be out on her own, not living at home.” It is difficult for me to view my accomplishments. My brain finds it natural to highlight the struggles during certain seasons. Society, as we know, has too many unneeded options. I have learned to allow comments to roll off my back, but sometimes it has a way of getting under my skin.

Furthermore, I have found that the older I have become, my memory has faded. The brain fog is thick. I was devastated when this began to happen. Heartbroken as the memories of my furry friend slipped out of my grip.

It is okay to struggle with holidays or your birthday as someone with a chronic illness. It is okay to have fears. It is okay to not be okay. As long as you do not give up. Even when you don’t feel like it, hold onto hope. Crawl forward, even if you are slower than a snail, you are still making progress.

Even though it is emotional, there is a part of me that looks forward to my birthday. I am deeply blessed to have people in my life who support me and love me. I am thankful for days of simple joy and laughter. The Lord has allowed me to thrive in the midst of great adversity.

“For You shaped me, inside and outYou knitted me together in my mother’s womb long before I took my first breath. I will offer You my grateful heart, for I am Your unique creation, filled with wonder and awe.You have approached even the smallest details with excellence; Your works are wonderful, I carry this knowledge deep within my soul. You see all things; nothing about me was hidden from You. As I took shape in secret, carefully crafted in the heart of the earth before I was born from its womb.You see all things; You saw me growing, changing in my mother’s womb; Every detail of my life was already written in Your book;
You established the length of my life before I ever tasted the sweetness of it. Your thoughts and plans are treasures to me, O God! I cherish each and every one of them! How grand in scope! How many in number!” Psalm 139:13-17 The Voice Translation 

The Pain:IBD

The topic today is pain with IBD. I don’t like talking about my pain. On the other hand, it is a part of raising awareness. Physical pain is a part of my daily life. It has improved with medication. I was taught the pain scale at a young age. Zero being no pain at all and ten being the worse pain of your life which is usually equivalent to giving birth. On a good day, it is a five or six on the pain scale. An average day is an eight.

Simple things like eating can throw me into a flare. A bad day it’s a ten hands down. When it is that intense I know there is a 50% chance it is a flare and a 50 % chance that I am in big trouble (shutting down, a tear in the intestine, or something collapsed). The pain at times is so intense it sends me to my knees doubled over screaming bloody murder. Fighting back tears, I attempt to smile and go back to whatever I was doing before the wave of intense pain hit. The intensity is beyond words.

I’ve adjusted to the pain to a degree. However, there are times that the symptoms are nerve racking and the pain is too much to deal with. It is challenging being a college student and learning how to navigate daily life while being chronically ill. At times it feels as though the pain just becomes more intense. Each medication you try you pray is the miracle medication, your breakthrough medication so that you can go back to living even to a degree.

Coping with intense pain is a challenge. An individual needs to learn when it is time to call the doctor or head to the ER.  I have the habit of walking around the house a lot when the pain levels are high. Reading fiction, if I can focus really assists in coping with the pain. In addition, I talk with my mom or my friends who are chronically ill. Sometimes I journal prayers or just write. I also clean while listening to sermons or Youtube videos. I don’t sit still very well. Once in a while I will cave and watch television. I don’t love television. Personally, if I spend too much time watching it I feel like I have wasted time. I also go on Pinterest if it is late at night..

How do you cope with physical pain?

Me And IBD

I am IBD Visible because I believe that awareness makes a difference. Education is key to living as healthy as possible. It is key to closing the gap between the healthy world and chronic illness world. Lastly, it is vital for those in the medical profession to gain a deeper understanding and compassion for us and strive for the best medical care. No matter how complex every person deserves the best medical care and to have manageable pain.

December 1st – 7th is Crohn’s & Colitis Awareness Week. The Chrons and Ulcerative Colitis Foundation says this overall about IBD: “Known collectively as inflammatory bowel diseases (IBD), Crohn’s disease and ulcerative colitis are painful, medically incurable diseases that attack the digestive system, causing abdominal pain, persistent diarrhea, rectal bleeding, fever, and weight loss. The effects of these diseases are largely invisible, which is why we need to make #IBDvisible!

Crohn’s disease may attack anywhere along the digestive tract, while ulcerative colitis inflames only the large intestine (colon). In addition to the impact on the GI tract, in some patients, IBD may also affect the joints, skin, bones, kidneys, liver, and eyes.”

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The pain began at age nine. Growing up, I frequently had stomach viruses. I had issues with being underweight, even though I was eating. I was told I was underweight because I was growing too quickly. The abdominal issues got worse about three years ago. I was unaware that I looked like a walking skeleton. In addition to the pain, I would have 15 -25 trips to the bathroom with diarrhea. I have encountered so many issues medically that it is a blur when some symptoms began. Eventually, I saw blood. It was a vicious cycle of medical testing and retesting. At one point in time, I swore I was done with the stomach stuff. Done seeing doctors. Done going through the tests.

Last April, I was in the I’m done state of mind when I encounter a huge flare. Of course, my mom brought me to the hospital. My liver enzymes were sky high. Despite the fact that I did not want to go through yet another colonoscopy one was ordered. I was positive for Ulcerative Colitis. The hospital doctors explained that they don’t see cases very often like mine. I have about five autoimmune diseases. I was in the hospital ten days. Despite their good efforts to avoid steroids, I ended up on a whopping 60 milligrams.

And so, the battle continued and continued to this day. I now have a gastro who I trust and like. One who listens, has compassion, trust me, and tells me everything I need to know. I struggle with eating daily. There is no set IBD diet. My current treatment plan consists of Prednisone, Balsalazide , and Remicade.

The journey with IBD is unique for everyone. If you are diagnosed with IBD I would like to encourage you to check out these links:Crohn’s and Colitis Foundation, Inflamed & Untamed, and Kelly Patricia.  CCFA has on its website: “We need to make IBD visible! Why be IBD visible? While IBD patients may look healthy internally they may be suffering. The toll IBD takes on the entire patient lies hidden underneath, significantly reducing public understanding of what IBD is and how it affects quality of life. YOU can change this by getting involved and sharing your stories, giving a face to these diseases.”

  • December 1: A focus on IBD advocacy.
  • December 2: The focus is how IBD is an invisible illness. The whole “but you don’t look sick,” thing.
  • December 3: The focus will be on pain.
  • December 4: The focus is on fatigue this day.
  • December 5: Mental health is the focus on this day.
  • December 6: Complications of IBD will be the focus of the day.
  • December 7: Community is the focus.

This week use the Twibbon to raise awareness. Share your story on social media. Use #IBDVisible. Share your story with the Crohn’s and Colitis Foundation linked above for a chance to be featured on the web page.

 

Living Loved

Living loved is an adorable phrase. It would look perfect on my wall or on a t-shirt. The concept is lovely, but actually living loved that is a different story. I had to ask myself, am I living loved? Honestly, it depends on the day. Many days, like tonight I do not feel loved and I do not feel like I am living loved. Living loved shouldn’t be dependent on our circumstances or the people we encounter it should come from the stability of the love Jesus pours out to us. This is a new concept for me. Maybe living loved is a new concept for you as well. We can work through what this practically looks like together.

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To live loved I need to be filled with God’s love.“I needed to reconnect with the One who knows how to breathe life and love back into the dead places. Jesus doesn’t participate in the rat race. He’s into the slower rhythms of life like abiding, and , delighting, and dwelling…” I need to have my quiet time, daily. Ideally, this would be three hours minimum. Realistically it is usually an hour and a half to two hours. No, it’s not impressive I am desperate for my time with God. Just like the amount of time everyone’s body needs is unique to them so is the amount of quiet time one needs.

Living loved is pouring out love. Some days this comes naturally. However, I become discouraged when I feel as though I am endlessly pouring into certain people with no response. Finding balance when pouring into people is essential. Blessing others  ultimately blesses us. Walking into a situation as Lysa says looking to bless others.

Precious friends, ” and live in love as the Anointed One loved you—so much that He gave Himself as a fragrant sacrifice, pleasing God.” Ephesians 5:2The Voice

Lord,

Enable us to lived loved completely confident in You. Thank you for the depth of Your love. Allow us to pour blessings into others lives. To invite others in and help them to feel loved. Fill us with Your goodness. We love you.

Amen

Uninvited Devotional

Worry sits shotgun barking endless commands. Like weeds the to-do list grows. Anxiety suffocates us. Yet it was never meant to accompany our DNA it is merely learned behavior another aspect of our fallen world.

As we process pass rejection, worry and doubt are front and center. We try to blend in by dressing like those around us. Perhaps even fixing our hair and makeup just so before heading out the door. In addition, we go to extra lengths to please others, whether that is compromising our standards or acting a certain way to fit in.

I love that Lysa includes Matthew 6: 26-27 in the study guide as well as the video for section one of the Uninvited Study.  “Look at the birds in the sky. They do not store food for winter. They don’t plant gardens. They do not sow or reap—and yet, they are always fed because your heavenly Father feeds them. And you are even more precious to Him than a beautiful bird. If He looks after them, of course He will look after you. Worrying does not do any good; who here can claim to add even an hour to his life by worrying?” (The Voice Translation). These two short verses are treasure packed with love. Reread the verses. Allow them to sink in. Jesus is gently whispering to you, darling daughter, I’ve got this, there is no need for you to worry. With Him you are safe, provide for, and always invited in. 

Jesus knows the depths of your heart. Who you really are. You don’t need to try to fit in or to be someone you are not there is no pressure. He loves you more than you can understand even with your flaws.

Jehovah Jireh (God Our Provider),

We praise you for the blessings in our lives. Thank you for this time to grow closer to you, to study your word, and to heal from our past. We surrender our past rejections and hurts to you. We surrender every anxiety to you. Provide for and bless each woman in a personal way this week. Amen