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.