Wednesday, December 7, 2016

Feeling Blindsided

I know no one expects to be diagnosed with a chronic illness, but I think all the fall out from my mast cell disease is more what has caught me off guard. Maybe some people see these things coming, but for whatever reason I feel blindsided.

It's not that I don't have friends in the very predicament that I now find myself in. It's not that I didn't know it was a possibility. It's not that I tried to convince myself that things were still sunshine and rainbows. It's just that I never expected it to happen to me.

We all get conditioned to wherever we are in life. If you're doing something every day, you just get used to it. Doesn't necessarily mean things get any easier, but it becomes familiar. For me and my family, our perspective has changed thanks to my mast cell disease. Symptoms that used to be worrisome are now just everyday life.

Nick jokingly reminds me not to break "Rule Number 1" before he leaves knowing that despite all our best efforts, I still might pass out but at least joking about it makes it a little less of our reality. Sleeping on the floor outside the bathroom has become routine with both Nick and I having our "hallway beds" ready to go should my GI tract cry mutiny yet again. I spend my days trusting in my crazy, fluffy poodle because I know she is often more in tune with my body than I am able to be. I'm on a first name basis with not only my doctor and his staff, but also the pharmacists, ER staff, and my insurance company. Is any of this normal? To us it is.


And that's why, when things all of a sudden "get bad" I still feel caught off guard.

As things has gotten significantly worse over the past 4-6 weeks, we've been desperately trying to sort things out and do something to stop this rapid progression of symptoms. I'm calling doctors I haven't seen in a while and trying to schedule with new ones. Even as bad as things are, I still don't feel like things are urgent. The staff when I call ask if I need an emergency appointment and I have to remind myself that "yes, I actually do." And that it's okay.


I don't see myself as one of the more severe mast cell patients. But when I talk with doctors, that's the category I get placed in...and it feels weird. It's a kind of twilight zone feeling where I know what my daily symptoms are but to me they are normal. When I take a step back and consider my current situation, though, I have to agree that maybe I am. Don't get me wrong, there are many who are so so so much sicker than I am, but if I'm truly honest with myself (which is incredibly difficult!!) I'm not doing so hot right now...

I'm primarily feeding tube dependent for my nutrition, even more so in the past month...The solid food that was slowly working back into my diet over the past 10 months has become a memory yet again with the most solid food I've had in almost a month being drippy eggs that I threw up hours later...I'm going on 20 EpiPens so far this year...and I was thinking the 16 I used in 2015 was a lot...I've seen more of the inside of the local ERs than the school that I am supposedly still enrolled in...I'm more familiar with which of my doctors are getting a new dog or bird than which of my friends have new babies...

And the hardest part of all this? The WHY? Not the "Why are you letting this happen, God?" Despite how tough things are right now, I do trust that God loves me, is in control even over my crazy mast cells, and that I can still fit into His purpose no matter my physical health. I might forget that here and there, but I DO believe that. The hard WHY is why all this is coming back.

Why has my Xolair all of a sudden stopped working? Why is my GI tract almost worse than it was a year ago? Why am I losing all the progress I made over the past 10 months? Why are my meds that have kept me stable for so long not working any more? Why do I have to give up so much to this disease????

When I said above that I trust God, I mean that. But that doesn't mean that my relationship with Him is always sunshine and rainbows. If I'm completely honest, right now it's quiet. I want to pray, but the words just don't come. I cry to Him in the toughest moments for Him to take the pain and to give some relief, to help me breathe when my throat is closing, to keep me calm when another round of anaphylaxis hits, but in the day to day downward spiral I find myself in, my thoughts become jumbled, my words are lacking, and I sit with my Bible closed in my lap crying.

I'm not mad at God. I know I couldn't hold onto joy without Him. I wouldn't be where I am today without Him. But sometimes when life is so so heavy, I just feel like I can't even look up. Living in northeast Ohio, I know the feeling of months on end with heavy, cloudy skies but still knowing the sun is up there shining away even if we can't see or feel like. Right now, life feels like that. I know God is still shining on me and wrapping me in His arms, but all I can see and feel is the heavy weight of grayness.

But despite FEELING that way, that's not what I'm holding on to. Nick and I try to read the Bible and pray together every evening. We're not perfect, but it is a special time that we have together even if sometimes it's spent on the floor outside the bathroom or in the ER. Lately Nick has been doing most of the praying. He encouraged me to start praying some as well, and I said right now the words just won't come. He reminded me that God doesn't care about having the "right" words or everything all in order. He just wants me to come to Him however broken I might feel in that moment. I was reminded that how I FEEL is not what is necessarily true. God never changes, He loves me where I am, and I can ALWAYS come to Him for grace and mercy. THAT is what is true. THAT is what I'm trying to hold onto when everything else feels so shaky around me.


The next few weeks are bringing more appointments, another round of Xolair, feeding tube change, travel to MN to see Dr. Afrin, and scheduling an outpatient

surgery. I'm glad these weeks will be busy because we can't keep doing nothing new with how rough things have been. But at the same time, I'm nervous. Some of the treatment options we are discussing are not things I ever wanted/expected to be considering. The severe mast cell patients fall into some of these categories...that was never supposed to be me...yet here I am...

But just like any part of life, we keep going! I'm mean, really, what other option do we have??? Some days I may not make it out of bed, I may not leave the house for a week other than to go to the ER, I may be unable to eat anything and try to keep down whatever liquids my body will tolerate, but I'm not giving up. Ain't no mast cells gonna stop me!!! So I'm going to hold onto joy, find reasons to smile every day, and keeping trust that God is in control and loves me exponentially more than my mast cells hate me.

Despite that fact that my unpredictable, mast cell disease doesn't seem to be fitting into my expectations of how chronic illness *should* look, God never fails to measure up to what He promised He would. And that is my Rock to hold onto during this season of feeling blindsided and out of control.

1 comment:

  1. Kylene, I am so, so sorry. I wish those words could help ease some of the pain you have been going through. I wish I knew why God chooses the path he does for some of his children.

    God, please help Kylene and Nick as they go through this difficult time. Please, send them people to encourage them. Remind those of us to know about what they are going through to uphold them in prayer when they don't feel like they can pray themselves. Give them your hope. Give them your peace. Give them your comfort. In Jesus name, amen.

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