Don’t Hold Your Breath 

We live in a life that focuses us in reality. Love is this whimsical fantasy that healthy people get to experience. Then someone enters your life that makes you feel it might be possible. Your hopes and dreams are all opening. The clouds are parting and you see this whole possibility of a world that those that are not sick get to have. Then it all falls apart and you are left with your sad empty life. How do you get over that? How do you repair this hole has opened? Nothing will ever heal the hope for possibilities once you have touched that dream. 


Never Give Up

I get down sure! I cry and fall to my knees to pray. I feel alone and let my worries rule my life. But! And this is a huge but! But….God has given us these people called friends. I pour all I physically and emotionally can and it leaves my well empty most times. But then I talk to a friend which, I might add, I shut out most times, I talk to them and they give me more than diamonds and gold combined. They fill my well and if anyone has seen those drink after a dehydration it is a quenching of thirst like no other. It’s something that I don’t even know I need which makes it even more elusive. When my best friend tortures me to remember the movie we were supposed to see together. As we go back and forth giggling non-stop. Alicia snuggles with me without even a thought. She gives me that warmth and touch I crave being alone so much and she never thinks I’m weird for resting my heavy head on her shoulder. Lindz understands my illness and shows me compassion and understanding that I truly will never understand. She knows me better than I know myself sometimes. She knows I should take it easy or need to talk before I do. We can talk for hours about life changing things or nothing at all of substance. Erin reminds me that no matter how much time passes that my friends still love me and will greet me with a warm smile and long hug. Then are the friends without a physical touch that mean so much to me. More than I could have ever imagined. Some are nameless that leave comments that touch my heart so deeply and at the exact right moment. Some are friends that I confide my inner most secrets of illness and sadness. We talk about clothes, Harry Potter, and faith. It can be my midnight text buddies that help me get through the night…..which helps me get through life.


September Poem


The smell of your hair
After a warm summer day
The feel of you nightgown
As you hug me goodnight
My small sound of you
Whispering my name under my door
The gentle rake of your fingers
Over my arms as we rest
The squeal of excitement
As we tell made up fairy tales
You brushing my hair softly
And constant chatter
Stickers all over my door
One more cartoon
Twenty later still nestled in my lap
Teaching you the ABCs
Biting your tongue in concentration
To get your “G” just right
You write on my walls
Posing like Paris
For my eager camera
So small but a giant of heart
When you were teaching me it all
Torching your image on my mind
I hate September
Because I love you much


Sorry to be dramatic but as a girl who is almost always nauseated a gluten allergy is torture! All I want are Saltines or toast. I could almost dream of crackers and bread. I also deal with chronic pain so in the middle of the night when I can’t even reach up to grab cereal I ate ice cream and chips. Tasty eh?! Not so much I feel disgusting. The thing is (oh yeah and I’m about to go off on a rant) that people who are “normal” or “healthy” don’t understand that on top of the usual chronic illness we also have to deal with things that healthy people freak about. Colds, UTIs, flus, headaches, food poisoning, and on and on. Again, that is on top of numerous symptoms of our illnesses (refer to the ten freaking pages of my symptoms.) Don’t even get me started on adding: Chronic illnesses plus every day illness plus stress of life plus emotions of life/relationships. It’s exhausting just thinking about it. Oh and on that note imagine dealing with all of that and not sleeping for days or just a few hours of naps. I get down on myself sometimes when I let things slip or I feel I’m being “lazy” (a common guilt trip I give myself) but when I look at the enormity of those mathematics I am proud of myself for having friends or even get out of bed some days. Wow. I also can say I am proud of any other person on this earth with a chronic illness that gets out of bed or even opens their eyes and breathes each day. Fight on!


I lost too many years
Dancing with the devil
For relief
I’ve lost my future
With my virginity
It’s been downhill
And all uphill
At the same time
A black widow
I got tired of hurting
Cutting so deep
A scalpel to the cancer
An ax to the innocent
Wanting trash thrown out
Years ago
Living in excess until
It’s all gone and dry
Still alive
Water running dry
Living dead without
My spirit
Faking life for ages
While I age past
Change emerging new
Underneath it all still
The same shell of me
A tank with a parade mask
Living in ‘what ifs’
That will never be
One life so aware of
Yet breathing in and out
Standing still, frozen
It used to be
I’ll have time for that
Now I’m late


Friendship is a Precious Gift


I have decided to share a private letter I wrote to my best friend Lindsey. She stayed with me for close to 3 weeks to care for me because my caregivers (mom and dad) were away. I am sharing this not only to acknowledge the quality person she is in a public forum (that’s kinda my thing now with living each day on YouTube) but also to share the deep connection we can still have even though we are sick. It takes a very special person to take on our burdens but they are out there. I know because I met Lindsey. I pray you have a friend or will find a friend as special as mine are to me because there are some days I think, “How on earth would I survive without my friends?!”

photo (1)

Dear Lindz,
I sit here crying because I just honestly miss you being here. I also feel so blessed that God honored me with placing you in my life. You are beyond humble and so hard to compliment but you are forced to take them now because it’s a letter lol! You heart never stops giving. You don’t have even 1 percent of selfishness in you! Thank you for taking my boat load of bad, sick, frustrating mess with my handful of good. I love your soft voice when you don’t know if I’m having a high pain day. I love your claps when you are excited. I love your straight forward way of saying things that can make me laugh until I cry. I love that I can talk to you about others (out of care and concern) and never feel that it turns to gossip (tearing others down in a mean spirited way or to bring yourself up.) I love that we can talk about the most hot button topics and learn so much from each other. I love that you help without even questioning or asking if I need help (carry my bags and just secretly think I’m weird for thanking you.)


I love that I get to see all sides of you which means I have earned your trust. I LOVE that you ask for forgiveness quickly and accept apologies quickly (making any of our arguments so freaking short!) I love that even if we argue I feel like I’m just waiting until we make up because I can’t stand not being able to talk to you. This is making it sound like we fight all the time lol! I love that all of 3 fights we have had happened because we never gave up on each other because friends are always gonna disagree at some points. It lets me know I can trust you not to break my heart or abandon me.


I am thankful for your support in what I do but also allowing me a discussion if I am doing something you don’t agree with. I am thankful that after every conversation I have with you I feel either useful, appreciated, loved or have grown in some way. Lindz I don’t think you will ever know how much it means to me and will forever that you CHOSE to spend your only break taking care of your sick friend. You are a far better person than me and way more mature beyond your years. I never felt judged or scared (two things I really thought I would feel opening up that part of myself.) Your gift of friendship will forever be marveled by me because I just am so undeserving. You put up with A LOT being friends with me but you do it with compassion, blind understanding, kindness, sincerity and unfaltering loyalty. I never thought I would meet lifelong best friends in my adult life but God is full of surprises! I am so proud of you throughout this past year. I am, many times, in awe of all you are accomplishing! Your fellowship in Christ means the world to me. I learn and grow spiritually every conversation we have about faith, God, church, the bible etc etc! I miss you so much and I don’t know when the tears will stop but it’s because I am so thankful for these summer memories with you.


Know you are missed every day you aren’t in Wilmington and you have so many people here that feel the exact same way about you as I do! You are my chummy. You are my sister. You are my person. I love you so very much and you are so appreciated!




PS Bailey is legit depressed too. I don’t think he was ready




Heavy Yoke


The Lord does not always give us the answer we need. Heck sometimes we get radio silence. Seemingly for no reason. The Lord have me words to ask someone I love something very important. It has come far longer than I expected or wanted. We never know what’s God’s timing is all about and all of the other parts He is working on before He answers us. I don’t like to admit this, no, actually it brought me to tears to hear from my Father. As a codependent it felt like a scolding from my parent and then I realized it sort of was! (Just the “scolding” was a gentle and kind reminder) He let me know that a lot of the questions I had and burdens I was laying at His feet are in His word. It was almost like asking your professor a question that he had just covered in his last lecture (that you were totally absent for and for no good reason). It is so easy that I fall away from keeping in His word, so easy to come up with excuses. None are valid because all of my answers are in his word. Luckily He still helps me find words because that is not my strong point (hence the rambling posts that come every so often!) I am so grateful for His grave and kindness to remind me to stop being an idiot (my label not His). Trusting in His timing, His work in me and others, and the answers He provides all around me. Fight on!


Conceal It, Don’t Feel It

I feel completely lost when my mom is gone. Well, not completely because I have God but let’s stick with being dramatic. I think since my mom, who is my primary caregiver, left for Florida I have been in a panic. Why the fear? My mom is the only person that I do open up to about the true scope of my illness. I think mainly because I am forced to let her know how bad things can get because she does care for me. Sad things is….I still hide things from her even. My mom leaving is giving me an alarming eye opener that I need to share how desperately ill I actually am. How the hell do I start this?! I have amazing and kind friends but there is only so much “sick talk” they can take. I’m scared to tell my friends. I sit her on my blog and my vlog and preach about opening up to loved ones. The truth is I have merely slightly lifted Pandora’s box. It’s better than nothing but I have been a coward. I have said what feels mildly uncomfortable but I have not stepped out of my comfort zone. I need to because it’s not fair on my mom and it’s not fair on my loved ones. It’s not fair on me. Fight on.

Please Live

I feel completely out of control. I want to throw my hands up in the air and fall to my knees in surrender. I am trying to be strong when all I am doing is falling apart. I can’t make anyone happy because I can’t even keep myself together. I carry a smile on my face as a large burden. I’m tired of being picked a part when I’m already in pieces. This is a private sorrow that has a glimmer of hope that I am choking because I am grasping so hard. Prayer is all I’m left with an illusion of normality. Millions of miles a part yet my heart is right next to him. Please be strong. Please carry your burdens. Please ignore the sorrow. Please be alive.