Wednesday, October 21, 2015

No news...

You know the phrase, "No news is good news?"

In the chronic illness world, "no news" usually means you are waiting...again...

Waiting on referrals...

Waiting to hear back from doctors...

Waiting on test results...

Waiting on insurance coverage...

Waiting on medications to be ordered...

Waiting to schedule with specialists...

Waiting for this season to pass... (sound like winters in Ohio anyone??)

So in the case of this blog, no news is not necessarily good news, it's just that...NO...NEWS...

We're waiting on referrals from my PCP to be able to apply for two specialty programs, one at the Cleveland Clinic and one at the National Institutes of Health in MD. We're waiting to hear back from my neurologist with results from the tests that were run to investigate the cause of my trouble walking and balance problems. We're waiting on my doctor to call in a prescription to my pharmacy to hopefully be able to monitor my blood sugar better. We're waiting on insurance issues to get sorted out so we are not receiving $750 ER bills that we shouldn't have to pay. We're waiting for a call from the scheduling department to get in with an endocrinologist.

Lots of waiting...

I get people telling me a lot "I don't know how you do it" or "You must be so strong" when they ask how I'm doing and I share that we still don't have any answers. I don't know how to respond to that...I'm not trying to be someone's inspiration or have super human strength in the face of adversity, I'm just doing what I can to keep my head above the water when I feel like I'm at the bottom of Niagara Falls.

If you were in my shoes, you'd do the same thing. You know why? Because you don't get a choice. I smile because if I don't, you'd be able to see the fear and uncertainty behind my eyes. I laugh and shrug things off because if I didn't, I'd probably start crying in frustration and discouragement. When you see me and ask how things are going, and I just smile and say "good," it's because I just don't have anything new to share.

That unfortunately is life with a chronic illness. There is no "getting better." There is hope for improvement and we ARE hopeful that one day I will have things managed much better than I do now, but I will live with mast cell disease for the rest of my life.

We hope that one day I'll spend more time with my friends than I do in emergency rooms and we'll be able to start investing in our own retirement plan instead of my doctors. We hope that one day our conversation starters are less "how are you feeling" and more "where are you going for dinner."

So when I say nothing much is going on health-wise, that doesn't necessarily mean that things are good or I'm feeling better. It just means that we have nothing new to share, my doctors don't know what to do, and we're stuck in the Bermuda Triangle of chronic illness, where referrals are lost, results take forever to get back, and nothing is being done in the mean time to help me feel better.

So right now, we have no news to share. I know, writing a blog post to share nothing...makes perfect sense...but we are still so thankful for all your prayers. Life doesn't get easier in the waiting time between doctors and referrals and prescriptions. If anything, those times are hard because there is nothing we can do but keep on keeping on and hope that maybe someday we'll hit the jackpot with a medication or treatment. It's during these waiting periods that your prayers truly carry us through.

We do the best that we can to manage on a day to day basis, but when doctors don't have much to add to what we already know, sometimes the waiting seems to stretch on forever. When I just get passed from doctor to doctor because no one seems to have any idea what to do for me, Nick and I are left on our own to try to figure things out for ourselves. We're getting honorary degrees out of this, right??

Thank you so much to those of you that reach out to me and Nick with encouragement or funny pictures or cute animals. Please know that the 2 minutes it took you to write a text or send a facebook message means SO much. I may not respond right away (or at all if it's been a rough week and I forget, sorry!), but please know that God is using every silly photo and emoji to brighten my days and lift my spirits.

Even thought no news isn't necessarily good news, God is always good and that's the best news of all!




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