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 .

Thursday, November 14, 2019

“Do the Next Right Thing” - Inspiration from Frozen II and Veronica Mars



It’s a factor of life that awful horrible things can happen to anyone. And a good chunk of the time it isn’t anybody’s fault or it is but you’re so far removed from them. 


Tragedy happens and sometimes we’re left with bruises and scars that we don’t know how to begin to process. And as I sit her battling IBS & a killer migraine, I’m having to remind myself of exactly that - none of my current situation is my fault or even really under my control. 


The pain and the sadness that contributes to this mess are scars, old bruises, and haunted memories of a little girl having to grow up too soon. And what breaks my heart is I got away easy - I was surrounded by love at home and felt like the four of us could take on anything. 


I never went into those battles alone and later when I did/am I know I have a safe place to fall back too. Not many people have that. 


So if you’re facing darkness & tragedy this day - I’m truly sorry and you are not alone. Hunker down, regroup, and let those wounds heal into scars.




Feeling really rough today. But appreciating how blessed I am that I can take this time to heal because of the amazing people supporting & encouraging me. 


It’s not pretty or easy but I know it’ll be worth it.


It will be worth it. 


@hopes.still.here


#authenticityjourney  

Friday, October 18, 2019

Sorry I’ve been gone, trying to heal some scars

I’m sorry I’ve not been so attentive to the blog. I’ve been battling a horrendously bad IBS flare. I will try better. 

I’ve been realizing over the past couple days that the demons I’m working to free myself from now are truly just the scars of long ago epic scary moments (still having trouble saying the word “trauma”). While some of you are no doubtingly saying “Duh,” hold up a minute. 

Those scars are from the scariest moments of my life; often occurring when I didn’t have the tools to handle. I didn’t ever know there was a toolbox. We all do the best we can with what we have at the time. 

My mode of coping was denial, trying to be invisible or keep everybody happy, and denying some more. And darn if I wasn’t good at it; I buried those scars so deep not only can you not see them but I completely forgot they were there. 

I’m writing all of this to selfishly get those scars out there. I’m hoping that if I get this out, if I own the scars that I have & learn to accept them; healing them won’t feel so hard. 

I do hope that this will help someone else, bring a little hope, and remind us all that nobody knows what someone else has going on behind the scenes. 



#endthestigma #authenticityjourney #ptsdawareness #youarenotalone 

Wednesday, July 3, 2019

This might be a thing

I caught myself focusing on the past a few days ago & I became so angry. Angry at how I’m doing this hard work of healing and the people or situations that hurt me just keep going on like nothing ever happened.


It reminded me a little of how after my dad died - I felt that the world had just ended and everyone else kept chugging along. 


In both situations, it’s like I’m searching for someone or something to validate or show some sort of awareness of the damage done and how different my life is. 


(I’m belting out “Cry” by @faithhill over and over again.) 


What if it’s nobody’s fault I have a different life now? 


What if no person or thing caused my scars? 


What if it was something more evil that can only be fixed by one thing, God? 


What if I have to let go of all the pain and fight & trust Him to do as He says? 




I have to let go and trust God ... Okay this might be a thing. 




#authenticityjourney #ptsdawareness #longpost #chooselove #letgoandletgod