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I’ve worked hard to keep this Hope’s Still Here more about my journey with chronic illness, share others I find inspiring, and causes I feel driven to share about. 

Today’s different and harder … it’s an important note about the effects of #gastroparesis & living with a #chronicillness . 

My gastroparesis and GERD have caused extensive damage to my teeth and oral health. My dentist, oral surgeon, gastroenterologists, and I have done the best we can to slow down or offset the damage but it’s now too far gone. I have to have my teeth removed and replaced with a fixed hybrid denture. 

This is an intensive procedure that involves extraction, a few implants placed for the denture and my jaw bone to connect and heal properly. This procedure is also extremely expensive and not covered by insurance.

So my sister and I have started a GoFundMe page to raise the funds needed to cover this procedure. So if you are able to help, any support would be greatly appreciated. Also please share this post.

GoFundMe Page

Gratefully,

Angela (@hopes.still.here)

#linkinbio #chronicillness #gastroparesis #authenticityjourney #chronicillnesslife #gofundme #patientsrisingfam 

Update: Where I Am Today

​ I’ve been really struggling lately; walking the tight rope of gastroparesis and chronic illness has my brain short – circuiting. Chronic illness whether it was irritable bowel syndrome as a teenager or gastroparesis now takes over almost every sector of my brain and life, especially now. I was always so proud that I was still able to be a functioning, independent woman and now I’m a partially functionally, frequently dependent on others woman. 

The truth is what chronic illness takes from me is not my independence but rather my choices. My ability to make the choices about my own life has been completely diminished. My days are ruled by how bad the pain, the fatigue, the nausea, the TMI bathroom symptoms are; its not my choice as to whether I get to go on a long walk or just make it to my kitchen. I have to have a running tally is my head of where my symptoms are at, what I have to get done, and what I want to get done. Often if I want to spend an hour or two out in the world and depending on the activity; I’ve been resting, eating/hydrating precisely, and practicing mindfulness for days before just to have the best chance of participating and each event costs me. Every day the questions are: need, want, can I handle the costs, and what if I’m wrong. 

All the while the world keeps spinning and I miss those choices I watch others make from the sidelines. Choices like what career they want to pursue, job they get to go to everyday, where they get to live, having a family or not, what/how to balance their wallet every month, and even building relationships. Choices larger then every next right step or move to maintain my health, obey the doctors and my body, stay out of the hospital, and mitigate the damage across my entire body from the doctors, loss, illnesses, and side effects. I live in shifting sands grasping onto the belief that making the smart choices now and facing all the uncertainty will ensure a more stable, better future.

*Although in our current medical system, it strains “the powers that be,” not the actual doctors, to believe that my gastrointestinal health impacted my dental health as well as my mental health. *

Ultimately the truth is my story is still being figured out; I live my life one day at a time or three months at a time between my gastroparesis specialist appointments. I’m reminded every time I log onto social media, I’m not the only one having to make these judgements and live in these narrow parameters. Some days that’s helpful not being alone but there’s always an aspect of loneliness because I’m the only one living in my body feeling each symptom and each choice slipping away from me. Some days it makes me grateful because for all the uncertainty I’m not writing this from a hospital bed or with tubes sticking out of me or as a child. Today the weight of it all just has me a little too contemplative, lost in the weeds of all the things, and holding onto the hope that my tomorrows will be better. And at some point, my story is more figured out balancing the illness and a full rich life of simple yet beautiful choices and opportunities every day.

Life, Love, & Loss Played Out on a Global Stage

 

I’m excited about this book for probably a different reason than most. Yes, the novelty of a constitutional monarchy played out on a global social media stage with real life princes are interesting in and of themselves. But I look at this cover and I see another AMFer. 

AMF is a support group I was a part of in college for students who had lost a loved one or an ailing loved one. All our stories were unique and often the only thing we had in common was the monster of grief we wanted nothing to do with but had to wrestle with everyday. We bonded over the underlying emotions as we processed loss and trauma so that the monster no longer drove our story but is now simply a part of it. 

Whenever I hear about or see someone out there who’s going through or who has gone through the grief process young - they become an AMFer in my mind. I immediately want to support them and also hear their story to learn how they handled the trauma. I’m further down the road and my dad’s death is a part of my story but every so often his chemo journey and loss rear their ugly heads in my life. 

So I search out these stories because I yearn to know how others survived and how I can continue in world when he couldn’t. I cannot begin to tell you how blessed I feel that my family’s loss and the loss of my dad was not played out on the world stage. Seriously huge amounts of gratitude for being able to rebuild my world in private. 

So I’m intrigued to read his story about the actual lives, loves, & loss of the biggest global stories in the past thirty years. I’m further interested in learning another survivor’s story and how they live with the scars. But I’m really grateful that another AMFer has the chance to share his story, his journey, and get his power back. 

#authenticityjourney #activelymovingforward #amf #ptsdawareness #griefjourney #grieftakesyourpoweraway #bookstagram #spare 

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.