September Poem

September

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

#TheStruggle

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!

Regret

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
Later
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?!”

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!

 

XOO,
Em

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

 

COME BACK SOOOON!!!

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.

Random thoughts!

Every night I think I’m going to do all sorts of things tomorrow. I will go shopping, go to the pharmacy and excercise. Then I wake up the next day and feel like I have been hit by a truck, run over by said truck and then dragged for miles. Living my life in my awake dreams at night while I should be sleeping. If life happened at night I might experience some things. I think maybe I have forgotten who I was before illness. How do I find out who I am when everything has changed so drastically? When I was young all I dreamed about was living life without regrets. Slightly unrealistic yet sweet and naive. I fear I will never reach my dream and this time of illness is wasted time filled with future regrets. We are only young for such a short period of time and then it is gone. Is my youth being wasted?
Happy Easter please check out my latest video. I put out videos every day for 365 days! Click HERE to watch!

Second Life, Part of healing

I have recently logged into Second Life…..now mind you I have played this “game” for about 8 years. It is a HUGE part of  my life. When I got into recovery I had to stop playing. It was heartbreaking. I had alienated the people I loved most because I was pushing everyone away because I knew I was unhealthy. Out of no where I thought I will check out SL and see if maybe two people were on that I could make amends with. They were and they forgave me and it just felt great.

 

 

What really shocked me (I don’t shock easy by the way) was that I was received with MORE than open arms but with open hearts. That sounds so cheesy even typing that but its the truest thing I can say to describe my reception. This life I created on Second Life was my lifeline to the world for so long. I would spend hours I mean HOURS forming relationships so strong they became family. I guess I just figured the people I had left would hold such bitter and (hmmm thinking of the exact word)…..(not coming to me)….just completely have moved on and barely remember me. Not only did they not forget me but they loved me….still! They cared and really truly thought about me over the past year. I can just say I am so humbled by these people and their capacity to forgive and love. I had given up when I left I was emotionally and physically drained and I expected they had given up too (most people would.) Well these are not most people and they had never given up on me even though we had not talked in almost a year. The reception back can only be described with one word…Family.

 

(picture insert “and Steve” lol) I am so grateful and blessed.

Woah My List Needs A List! #tag

I was rereading the Spoon Theory in preparation for a Vlog I will be doing on it. I was prompted to do the video on it because my second mother just stumbled across it and had never heard it before! Silly me was just thinking all us sick people knew it and if I read it then those I love should psychically know it right?! Welcome to my brain!
So anyways, I will speak more on that and share the Vlog when I have the energy to explain I have no energy 🙂 hehe So, for some reason all this spoon talk prompted me to think, “Hey! I should right down all my symptoms as everyone has a different experience with fibromyalgia and I also have other conditions.” I throw symptoms out all willy nilly (yes, I just used that phrase) and I honestly expect everyone to know, again psychically, what I am going through. So, I open my Vlog diary to quickly write out my symptoms and begin to write……….*still writing*………….*still writing*……..O_o…….wtf?!………*come up for air* I mean GEESH!!! I haven’t really written it all out and sat and access it since I was diagnosed. It is staggering and sobering. No wonder I feel so frustrated when others don’t seem to understand how much effort something that is simple for “healthy” people to do. DANG!
I suggest you start at the top of your head and finish at your tippy toes and write all that you deal with including your brain! Sit back look at it and show your specialist, pain management doctor, or rhymotologist. If all doctors are sucking at being doctors aka doctors in Nc (minus a select few) then use it to access your own treatment. At the very least it was liberating. I cannot really explain it because it sounds like it would be depressing but it’s totally not. It’s the complete opposite. I could puff up my chest like yeah this is what I deal with so just try to say I’m lazy or faking or “you could totes work part time!”
I will share my list of symptoms (minus the stick figure diagram of myself) in hopes that someone will either learn more about the wide array of symptoms for fibro or feel not alone! It’s hard but hey we aren’t suffering alone and I love my readers and hope that in comradery y’all will list yours for yourself and if feeling brave share in the comments!

List of Symptoms
Scalp pain
Occipital pain two points
Dry eyes\bloodshot
Pain in eyes
Daily headaches
Dry mouth wakes me up
Jaw tightness\pain
Allergies
Sore throat
Painful lips from picking
Anxiety
Panic attacks
Major depression
Social anxiety
Codependency
Self harm
Insomnia
Fatigue
Neck pain\strained
Fibro fog
Memory loss
Trouble remembering
Trouble concentrating
Trouble doing simple tasks
Trouble with speech
Radiating pain
Pain down pack
Radiating pain down shoulders
Tightness in shoulder blades
Elbow pain
Chest pain\rib cage
Stomach cramping
Heartburn\Acid reflux
Nausea\upset stomach
Throwing up
Full body widespread pain
Lower back pain
Pain in tailbone
Pain under buttocks (can’t sit)
Thigh tenderness and radiating pain
Knee radiating pain
Left knee injury
Sore calves
Severe menstrual pain
UTI symptoms\bladder pain
IBS
Bloating
Cramping
Sharp pain
Constipation
Diarrhea
Morning stiffness
Morning tightness
Full body pain
Exhaustion
Feel like in a fog
Muscle jerks\spasms
Sensitivity to smells, tastes, noise, crowds, lights
I get overwhelmed easily
Gluten allergies
Sleep interruptions
Wake up often
Can’t fall asleep
Can’t stay asleep
Flulike symptoms (feels like poison in my veins)
Throbbing pain
Stabbing pain
Aching pain
Primary and secondary insomnia
Sensitivity to medicines
Get sick or exhausted with exercise
Shortness of breath
And more unfortunately! Incredibly freeing! I hope that in comradery y’all will list yours for yourself and if feeling brave share in the comments and title it so we can see and invite your readers to join in!
Name your post “My list needs a list” and tag 1-5 people
Keep fighting!

My Vlog Channel if interested! Click here

#SorryNotSorry Tag

I’m sorry I sleep in late
I’m sorry I can’t handle most large crowds
I’m sorry I cry when I get a migraine
I’m sorry I still grieve for a child that wasn’t mine
I’m sorry I care about my dog more than most things
I’m sorry I just started sticking up for myself
I’m sorry I call and cancel
I’m sorry I’m not reliable
I’m sorry I don’t look presentable most days
I’m sorry sometimes I don’t shower
I’m sorry I watch a lot of TV and movies
I’m sorry I am stuck in bed most days
I’m sorry I am distant
I’m sorry you have to carry my things
I’m sorry I can’t walk very far
I’m sorry I don’t want to see people some days
I’m sorry I disappoint you
I’m sorry I don’t exercise
I’m sorry I don’t eat right
I’m sorry some nights it feels like I’m dying
I’m sorry I’m needy
I’m sorry I need to be in bed even if I can’t sleep
I’m sorry I don’t drink or swear
I’m sorry I don’t think funerals are humane
I’m sorry I value my dogs life over some humans
I’m sorry I wear pajamas all day
I’m sorry I talk when I’m nervous
I’m sorry I don’t talk when I’m depressed
I’m sorry I push people away when I’m scared or miss them
I’m sorry I don’t deal with death
I’m sorry you can’t count on me
I’m sorry I forgive easy
I’m sorry my life feels like a prison sometimes
I’m sorry I have to go to doctors a lot
I’m sorry I lie and say I’m okay
I’m sorry I’m sensitive and complicated
I’m sorry all of a sudden I have faith
I’m sorry that my pain isn’t fake
I’m sorry I sometimes can’t even talk on the phone
I’m sorry I’m unreliable
I’m sorry that life happens and I have a hard time dealing with it
I’m sorry you will never understand
I’m sorry I have been closed off
I’m sorry I decided to seek recovery
I’m sorry I abandoned you
I’m sorry that it seems I don’t care
I’m sorry most days God doesn’t just make it go away

God will cure me in His time. I am human and learning to be me on top of having an illness that never goes away. I know how frustrating it is for you that you can’t make me all better. I don’t pray for God to heal me. I did that for many years. It’s to constricting of a prayer. I pray now for Gods loving grace and strength to get me through each day. Feels He can use me in much better ways when I pray that. I don’t need to give my ailments any more power over me. Something is broken needs to be fixed or looked at or diagnosed. I refuse to put my energy into my illness anymore because instead of receiving Gods grace I am becoming weak from giving what’s left of me to my illness (both body and mind). I don’t care about you anymore diseases. We are over. I chose a fully committed life to Christ.
I’m sorry illness I no longer give you my power. MOST of all I’m sorry I’m not sorry.
I challenge all who read this to write your apologies and forgive yourself of each of them. Some are just who you are/your personality and others are how your illness has changed you. Dig deep and honestly, if you do, I promise your yoke will be lighter.
Title the blog “#sorrynotsorry” and tag 5 other bloggers!
I tag: Jenn, Joy, Erika, Emilee, Leslie, Trisha (I did 6 shhhh) TAG YOU’RE it!!