Saturday, March 6, 2021

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. 

Monday, March 1, 2021

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.

Sunday, February 21, 2021

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.

Thursday, July 2, 2020

Having a #chronicillness in the time of #covid : Health Update

On a non #corona day, a chronic illness normally means doctors, blood tests, scans, treatment protocols (hopefully), and the dreadful, avoid-at-all-costs ER visits. ER visits are no fun. You can develop a rhythm of distractions, have family distract you, have a go bag packed so you have all your necessary tools. Except in the times of #covid19. 

 

I found myself in the ER after a week of severe abdominal pain, extreme nausea every time I breathed, and well I moved into my bathroom. So at this point, my disdain and triggers associated with hospitals get outvoted and ER here we come. 

Except this time:

-          No one can come with me

-          I’m so weak I can barely form a coherent thought to answer the doctor’s questions (so having my mom there would have helped)

-          Every smell, sound, taste of saline through my IV was an emotional AND physical trigger. 

 

I’m alone, weepy, weak, and shaking trying to drown out the panic with music or a movie. Scary part is that, minus the weepy part, battling any chronic illness “gremlin” is a solo journey. If like me you were initially diagnosed as a child, your parents are vital advocates/allies, but it is your body the “gremlin” is attacking. Scarier part for me is that up until seven months ago I had a treatment protocol that worked and now I don’t. And #covid is just making things worse. 

 

Alone in the ER, with some nice #healthcareheroes, I got the fluids and relief I needed to sure me up to handle this “gremlin” at home. Because I am in the horrible waiting period of finding treatment, of finding relief. I have been to ALL the doctors, had ALL the tests that my local providers can think of. I was supposed to be seen by a top specialist at a medical center next week but due to #corona it’s been postponed AGAIN. Indefinitely this time; they didn’t know when the clinic would reopen. 

 

I’m trying to be understanding. There are bigger problems that need to be addressed. Other people are in much scarier states of limbos than me. Except I’m still hurting, I’m still stuck in my bed, and it’s exhausting. (And if this is a true #authenticityjourney – this last round is making me a little scared). 

 

So there’s the update. There’s a #longpost as to why life in the time of #covid is changing nearly every facet of our world and is taking its toll on a lot of people. So wear the mask and be a little kinder. 

 

You can’t always see the battles people are fighting.

 

Tuesday, March 10, 2020

Reflections from Today’s Battle with a Chronic Illness & the Healthcare System




  • I’ve been battling this illness for over 15 years, I’ve learned long ago what my “normal” is. I’m very well versed in my “normal” so if I reach out for help from you; it’s because something is wrong. I’m not going to jump through the hoops to see you if my symptoms weren’t way off “my normal”.
  • Since my body can’t announce when it’s cramping, shocking me with pain, having me escape to a restroom, etc. - I have to list all these uncomfortable symptoms. Please just listen to me and not debate me on what my body can’t possibly do. 
  • Yes, I’ve become an expert on my body BUT I did not go to medical school. Hence my smiling face in your office with instead of the hundreds of places I’d rather be.
  • I would love for there to be more to my life right now than frequent visits to the doctor’s offices, labs, and scanning facilities but I need your help. It is what it is.
  • I can understand everyone has good & bad days. But please remember that I’m coming to you on my worst days & I work really hard to still be nice. So it’s extremely hurtful when the people you’re coming to for help are rude, belittling, or mean. 
  • Can we all (me included) just practice more compassion & kindness please. It’s hard some days; the chaos of life can make it extremely difficult to see that hope still around us all. Lashing out at someone else due to my own pain always makes me feel worse not better. So, can we all take a beat and be nicer to each other.
  • Remember a smile or a wave, any small act of kindness, can remind us all that Hope is Still Here.

Tuesday, March 3, 2020

Super Tuesday

I know the definition of “Super Tuesday” but even with my degree; I still don’t get it. Elections always remind me of middle school. And middle school was not SUPER. So I think we need a new classification as to want is exactly worthy of SUPER

SUPER has been overused it holds little meaning outside of grade school. With adults, SUPER is tongue-in-cheek, sarcasm. SUPER should mean something more. 

So today is SUPER Tuesday if:
  • You survived any storm for another day.
  • You made it through another night 
  • You faced the chaos of life
  • You preserved through yet another flare of an illness that baffles even your doctors
  • You smiled, even if it was a sassy one
  • You held on to hope 
I hope you had a real, honest-to-God, SUPER Tuesday.

Monday, December 9, 2019

What was I hiding for?



1. This is from around a week ago. & this will be a #longpost stick with me please. 

2. It has taken me that long to find the words and courage to post. 

3. I have had a chronic illness for about 18 years and recently it’s decided it wants to be different. I was forewarned a long time ago that my symptoms could fluctuate with age. Yeah, this isn’t a fluctuation. 

4. So I found myself in the ER getting IV fluids, CT scan, etc. due to how awful this flare is being. 

5. I don’t mind doctors, clinics, and the tests but my anxiety goes into hyperdrive if I get near a hospital. So color me shocked when I didn’t have anxiety issues until I was processing out because I felt so bad. 

6. For 18 years-ish, this chronic thing has been managed and I had a system worked out to handle any flares. Well I’m in a whole new ball game now. 

My #longawaited point: for those years, I could hide/conceal what was going on with my body. 

If you looked at me, there wasn’t an IBS/GERD label stamped across my forehead. I prided myself on managing “the thing in my gut” so well that no one could see my hurting. 

But what if that was the wrong choice? Why did I feel like I had to hide something that was never my fault or anything I could control? Why did it take an ER visit years later for me to finally yell “stop”? 

This is an #authenticityjourney right; right now pretty much feel horrible a lot of the time. Will it always be like this; God willing no but this is my now. 

I went got the care I needed and it helped me ease some of the symptoms for a bit & made progress in facing a huge anxiety of mine. 

Those are good things. There is a silver lining and that shouldn’t be a secret. Nor should the illness be. It’s part of me: a soon-to-be tiny minuscule part of my story hopefully. I’m here as are millions of others who live with the same condition or hundreds of others. 

We’re not less than; we’re just here. 

Get it yet - @hopes.still.here .