Water’s Right At My Neck

I grew up in a faith-filled family. We went to church a couple of times a week, Vacation Bible School, Music Camp, and choir. 

My parents made two very intentional choices in how they raised my sister and I in regards to faith. One: they very much LIVED their faith in how they treated us, each other, people in general and how their everyday choices. Two: they had their faith and we each had our own faith; basically what did I believe & WHY did I believe it.

Now I deviated a bit and got lost in trying to be the “I’m fine,” people pleaser girl. Until about a six weeks ago, I had probably never opened my Bible except when I was supposed to.

And then I remembered what my mom does & has done every night and every time life goes haywire: she goes to the Bible.

So when I start feeling overwhelmed by all the changes and unknowns that gastroparesis has brought to my life; I find myself doing just as she did. I open up my Bible because I WANT to, not because I’m supposed to. 

Every time all these changes and unknowns make me feel like I’m underwater - that’s where I’ve been finding my peace lately. In knowing, holding on to, and reminding myself that He has my future already mapped out and He’s got His hand on all the uncontrollables that seem to surround me. All I need to do is focus on this moment, right now, this minute and TRUST in Him for everything else. 

It took me probably a little longer than my parents would have liked and I’m still really new at it but they have always known I have always had to find my own path. 

Grief and Chronic Illness

I’ve spent about a week processing my big appointment @hopkinsmedicine .

Here’s the thing about being #chronicillnesspatient - there’s a whole lot of world shifting reckoning that comes when you finally have that appointment and meet with THE doctor for your specialness. 

The before time is filled with ambiguity, frustration, and restlessness. The after feels, to me at least, like I’m grieving again. 

I went through those stages of grief after losing my dad figuring out how to live in a world where he wasn’t. How to build a life and whole new self in that world. 

And now I feel like I’m doing that again. Instead of the loss of a parent, I’m grieving my old life, who I used to be, what I thought my life would be, choices I would get to make, and things I yearned to have in my life that just might not be possible anymore. 

I felt different leaving that office. Initially, I was a little in shock but grateful for a plan and answers. But that wore off and I could no longer deny that everything was and will be different. 

I have to adjust to a new reality again. I have to face what I’ve lost to even begin to figure out how to be in this new world; let alone build a life with all these new things I have to remember and to accept.

As I process, I’m living between my earbuds (as usual) being comforted by music and podcasts. @dramaqueensoth reminded me of these two quotes that are perfectly timed for my life right now.

So for other #chronicillnesswarriors I hope these will bring you a little validation and support as they did me. 

#authenticityjourney #ptsdawareness #gastoparesis #longpost

Birthdays can be Complex

It’s my birthday but there’s a catch - it’s also my dad’s birthday. On the morning of his forty-third birthday, I came into this world and found a best friend. 

My mama will testify to this; my daddy was my best friend. We were a unit; large crowds, new people, or anything he was doing I was his shadow. 

After we lost him in 2009, it was hard to celebrate. I would celebrate early and just get through the day. Sometimes I would spend the day hiking, people watching, or watching TV shows or movies we used to watch. After a few years, it got easier to celebrate the day. And now I have a different understanding of the day. 

This day is special because it’s the day I got a best friend. A day I choose to celebrate not my birth but rather the nineteen years I had with a great man who loved his family and doted on his girls. 

He was my confidante, quiet protector, occasional partner in trouble, and role model. We would have long talks about music, movies, history, psychology, and life as I got older. 

He taught me the importance of choices, how you respond to a situation, and in being present when you’re with someone or any moment really. We would go play miniature golf and to fun eclectic shops whenever we went on trips with the family. He taught me the importance of being around your extended family and knowing where I come from.

He was a chaplain but rather than tell me how to be a Christian; he showed me everyday. He made sure that I understood the importance of my faith being exactly that my faith. How you choose to live your life each day and the relationships you build are how you best share God’s love. 

He was honest; when I asked why I was always involved in so many activities - to keep me out of trouble. And yes, he tried to protect me from the darkness of the world, even when that darkness was the cancer that plagued a lot of his life. 

We bonded on family ties to North Carolina that changed how we said certain words and our specific  taste in barbecue or sodas. We somehow always found a way to have crab legs on our birthday, play skee-ball in arcades, and get me a new stuffed animal from Build-A-Bear nearly every year until my sophomore year of high school. 

He would pretend I didn’t sneak downstairs to watch TV when my stomach issues kept me home from school. I would pretend he did everything my mama had asked him to do when I would check on him after school when he became home bound my last two years of high school.

So our birthday is no longer filled with sadness just a twinge; a slight ache of something missing. Our birthday is a commemoration of a life well lived, a great family, and a woman trying her best to do the same. 

It’s better. It’s easier in a way. 

And if I spend the day balled up in the corner; my daddy would “Gibbs-smack” me from heaven.

Water right at my head

I was talking with someone recently; they asked me how was I feeling? Before I knew it my automaton answer of “you know us we’re wired for fighting.” 

And it hit me again all of it. This fall will be twenty years of battling chronic gastrointestinal issues. Thirteen years since my dad passed due to cancer. Nine years of my mama juggling multiple autoimmune disorders. And I’m barely in my thirties.

I just want to scream “ENOUGH!” Can’t anyone see I’ve been treading water in rough seas for awhile now? How can I get a vacation from my own body? When do my emotional scars heal enough or I heal enough to have a life? When do I get to thrive instead of just battling to survive?

I know. Dreary right. Woe is me. Poor me. Sounds ridiculous. 

I get it. I thank God everyday for the blessings I have in life. A fierce mama. A family that loves me. Great friends who let me vent, totally understand, and help me up off the ground. And a the simple things that are often taken for granted like my daddy’s sweet tea. 

It’s just sometimes … the water is right at my head. 

Power Ups

Living with a chronic illness is hard. Knowing you have potentially more life-altering appointments coming soon scares me sh**less. Flaring something horrible after a weekend of so many joyful moments is crappy. Feeling like you’re feeling too much is just stupid. 

I could go on but I won’t. I will not let these conditions run completely over my life. 

Today has been hard and flaring sucks. But you know what helps - all those things my body and mind try to stop me from doing or healing from. 

Power Up #1: Learning the importance of exploring from the best guides I know. 🐢

Power Up #2: Calming, uplifting, feel-good movies to distract myself with (and drift off to). 📺

Power Up #3: Finding a new community filled with laughter and a shared connection to be of service through support & love to those who should never feel invisible but often are. Awesome Community + United Cause = 💞🎄🚸

Power Up #4: Listening to three bada** chicks revel in their past journeys, together & apart, without letting the evils of this world taint it. HBM + SB + JL = 🙌🏻🏆💓

Power Up #5: Still being able to cherish nature while flaring because of awesome people who share their true mountain wildlife moments. 🦋

Power Up #6: Remembering every second of joy I had this weekend. It’ll sustain me; wouldn’t change a darn thing. Finding healing in the wonder, peace, and goodness in those moments. 🌹

So to anyone’s who’s struggling: Remember the power up moments. And quite often you’ll find that the smallest moments provide the greatest power. 

Laughing is okay

I remember these days: hanging out with friends, impromptu photo shoots, & laughing without any guilt or fear of what might come next. I do miss those days. But there is something to be said for having even small joyful moments in the midst of struggle and healing. 

I’m realizing this after #campchristmasinjuly last night. For an hour, I was able to focus on silly things, connect with new people, and laugh. They didn’t care that I can’t have s’mores with them and not everyone needed to know or care; and we all could laugh at the silly things that happen in life. 

• For someone learning how to have a life while battling a chronic illness - that matters.

Most importantly I got to do all of this while helping kids who go unseen and undervalued. I’ve found that in helping others focusing in on supporting their healing, I wind up healing myself.

Why am I sharing this? 

1. It’s a part of my healing right now. I struggle to find the pieces of me I feel I’ve lost in this battle with #gastroparesis & #ptsd . And I found some.
2. #authenticityjourney 
3. There’s always a way to be of service to someone. No, it doesn’t make my battles any less painful but it gives me clarity, gratitude for what I do have, and strength for the healing. Also it’s just how I’m wired. I’m a helper. Always have been. It’s nice to know I still can be. 
4. It’s an explanation. Camp Christmas in July may be populating my stories for a bit. #sorrynotsorry because every kid deserves to feel loved, seen, valued, and equipped enough to handle what each day gives them. I’m passionate about children, education, and creating a better world for them. That’s a huge part of me, therefore my #authenticityjourney. 

Come join the fun - @christmasisnotcancelled

And remember it’s okay to smile even when you’re body what’s to dictate otherwise. I actually think it’s medically advantageous. 

That Inner Bada**

I’m a chronic illness patient who spends most of her time between her bed & bathroom or shuffling to appointments. I’ve been doing this little dance for over ten years as an adult, and another six as a minor.

I’ve been called directly or indirectly: liar, cheater, attention-seeker, faker, hormonal, worrier, problem child, and difficult. 

None of this is true. And it’s forced me to become not just my own advocate but a warrior in an arena I should never have been forced into. I’m done with it.

I’m fighting to survive and make a life for myself. My family and I have been doing so for years.

Don’t tell me I’m wrong about the medically verified diagnosis and information I’ve been given. Especially if you can’t even speak intelligently about my chronic illness. It wouldn’t serve you to underestimate me either. 

I have a strength I never asked for but have gained through a long fight. A fight to survive, to have a life bigger than just surviving. 

Don’t push me in a corner. Don’t box me into some construct you’ve created in your mind for me. 

You won’t believe the fighter that gets back up and into the ring. 

Thoughts on a Stressful Few Days

 I’m tired.

Deep in the bone, world weary tired.

And believe it or not, it’s not from my gastroparesis.

I’m tired of being penalized for having a chronic illness.

I get it. I’m a thirty something woman. I don’t fall under the “accepted” picture of what someone thinks of when they think of debilitating health condition.

None of that changes the fact that I am. I have severe pain, difficulty getting adequate nutrition and hydration, lost weight, severe nausea, and I spend way too much time in the bathroom.

 

Let me be clear: I am beyond grateful for my doctors and nurses. I’m grateful to all the doctors, nurses, and essential workers who are battling COVID, natural disasters, and all they do that no one sees.

 

My frustration is with the suits sitting at the top of medical institutions, insurance companies, and drug companies who place profit over someone’s life. These individuals who sit comfortably in their fancy chairs in their homes and offices that are worth three times more than a typical household.          

Healthcare is complicated. Economics is complicated.

I get it. I studied one in college and I’m becoming a professional patient in the other.

I’m frustrated beyond words at the bureaucrats who pay little for their own insurance but deem themselves fit to dictate mine. Senators and Congress Members who are more concerned with lobbyists paying for their next campaign then the doctors, nurses, and patients waging wars against horrible diseases.

 

We deserve better. All of us who are battling things that were never our fault. Evils that often rob us of our ability to work and live even a fraction of what we imagined for ourselves.

I will continue to listen to the doctor’s instructions to manage my chronic illness. I don’t really have a choice other than to fight even though the system is broken and my body is broken.

I keep fighting because I know I’m worth it. Life’s worth it. I’ll get myself back up and into the ring. 

I’m just tired.

And we all deserve better.

Open Letter to My Grandfather

     I’ve spent my quarantine working my way through a major health scare and getting answers to why my body does not want to work anymore. As I try to process and acclimate to this new entity, I keep being reminded of the warriors who have fought bigger battles. Do you ever feel like you’re not doing anything, or your struggles may not level up to others’ wars?

           My mind wanders quite often to all my Grandpa Jack experienced in his life. Grandpa Jack died years before I was born. He was born & raised in North Carolina, lived through the Depression, served in WWII, worked as a postman, grocer, and many other jobs. He met and married my Mimi shortly after the war & had 3 amazing kids. Grandpa Jack coached my uncle’s peewee football team and was bewildered when all his youngest, my mama, wanted were a pair of red shorts instead of a new dress. He lived a full life; I do not know if it was because of all he faced or in spite of it. And where did all that strength come from? 

He was severely burned as a child trying to heat up the wood stove faster.

            Lived with an angry father until he could enlist in the Marines.

            Served in the Pacific Theater – wounded on both Iwo Jima and Guadalcanal

            Haunted by memories of the horrors & brutality of the war his entire life; later diagnosed                         with battle fatigue.

            Injured on the job as a postman one day when he was walking his route.

            Fought day in and day out every war-torn memory, painful injury, and major heart                                    complications to give my mama and her siblings a good life.

            Ultimately those injuries would take his life.

I wonder if he knew all he did, all he survived did give his family so many blessings. I often get stuck on whether he knew all he built for himself.

            He fell in love.

            Loved his children & was a strong presence in their lives.

            Found & lived true forgiveness.

            Tried to heal & change patterns in his life in a time when few others were doing so.

            Did he feel in his bones how much he was loved, someone to be proud of, someone                                  whose character I try to emulate?

I get scared, feel the toll of my gastroparesis, or find myself acting out of old scars, only to have his face pop up in my head. This picture of him standing next to his crop of corn grinning from ear to ear. 

I know that though he never knew me, but he loves me as he loved all his grandchildren.

I wonder if he would buy me those red shorts just like he did my mama.

I know he would be picking me up, placing me back into the ring every time I feel                                    defeated.

He was a warrior. He’s one of my angel warriors.

And I just wonder if he knew how important he was.

I find myself hoping that all those warriors that came before me, who walk alongside me, know   it’s their example I’m following.

                        If I’m strong, it’s because they were.

                                    I don’t give up because I have no idea what that looks like.

I take one step at a time in the boot prints he left for me.