I’m almost afraid to say this because it will inevitably cause something else to happen, but for right now… in this moment… I’ve stopped getting worse.
* knock wood if you got it *
And for right now, not getting worse is good enough.
My friend Nicole gave me a [loving] talk the other day about the fact that, in my disdain for complaining, I actually never talk about my life in the present tense at all. And she’s right. [don’t you hate it when that happens?] I tend to talk about things after I’ve worked my way through them.
The biggest part is that I don’t want to complain… I don’t want to hear myself speak aloud all the troubles if I can’t follow it up with what I’m going to do about it. For me, it always seems like I’m just adding weight in my heart when there are problems and no solutions.
It’s complaining without purpose. And I just really don’t like how that feels.
It’s also difficult because, in truth, the direction my life is heading is simply not pretty. And talking about what that means for me, if I look at life realistically, means a lot of loss. For me to process that I have to give myself a chance to sit for a moment and look at that reality. To acknowledge it, to mourn it, to let it go. That’s hard for people to listen to because their first instinct is to tell me I shouldn’t look at the future, I can’t give up hope, I can’t let myself go there. But I have to go there. It exists and pretending it doesn’t isn’t going to make it go away.
Trust me when I tell you I have hope. If some miracle happens to me tomorrow I am going to embrace it with every fiber of my being. But I also have to equally embrace the not-so-fun-stuff. If this is my life, if this is where I am at, then this is where God is at, too. And if I’m wasting all my time and energy trying to pretend the future doesn’t look like it does, then I’m wasting God’s time as well. I know that I need to face what life is looking like now so I can accept it, hand it to Him and find joy in the midst of it. It would be nice to go around it, but the only way is through it.
It just is what it is.
To answer the question some of you asked in the comment section: Yes, the past three and a half weeks have been like this simply because I left the house that day.
I have to tell you, I was prepared for it to be rough but I had no idea how bad my body and it’s reactions had gotten. I think because I have been so diligent about isolating myself and keeping things consistent for my body and health, it just wasn’t clear to me that I was still getting worse despite the lack of exposure. There was still some piece of me that thought it would just be a hurdle. I was still thinking of masks and oxygen and ways to get around this, but there is no way around this. I am completely and totally, from here on out, confined to my home.
No open doors or windows, no sitting on the patio or letting Riley go for a walk. No friends’ homes, no movies, no church, no outings. I won’t ever again sit by a bonfire to watch a sunset. I won’t smell the fresh dew on the grass in the early mornings when the air is crisp and the lake is smooth as glass. No weddings or funerals or graduations or school plays. More than all of those things put together, I think of my nieces and nephews – the lives they have ahead of them – and my heart aches as I become a supporting player watching from a distance.
But it is what it is. What I’m going through now, because I left my home for a few hours, is something my body just can’t do again. I was expecting the level of pain from the extra movement and short ride in the car, but the issue with my lungs/body reacting to everything and anything it was exposed to was far more than I imagined. And the problems with the resulting medications has simply added to the intensity of it all.
Hence, the long few weeks. I can’t tell you how much I appreciate all of you being flexible with me not posting everyday. I miss being on here so much, but it’s been a weight off my shoulders to have the freedom to just sit down and write when I feel I can. The steroids and breathing treatments and other meds have a lot of side effects for me, which means I have to really just go with the flow of the moment. The most obvious side effect is that I now so closely resemble the Stay Puff Marshmallow Man from Ghostbusters I’m waiting for offers to star in the remake. I’ve expanded so quickly that at some point everyday my skin actually aches. Add on the shakiness, the sleeplessness, the exhaustion that fights the constant feeling of being antsy, the hot flashes and the weird feeling of a slight vibration all through my body all the time, and you have the parts that I can learn to live around.
It’s the other stuff that has made this hard. Because of my disease, I have gone off and on steroids a lot. And because of my disease, it takes larger doses of steroids to take care of the problems. We try to not stay at the higher doses for longer than absolutely necessary because each time I go on and taper off, the rebound pain that comes afterward is more intense. So, after the two week mark this time, I tried a small step-down of the steroid. My lungs weren’t great, but I wanted to see if the small change would make a difference or if they would stay stable. Two things happened. One, my lungs didn’t stay stable. Two, my body went insane.
The next morning I woke up to a lot of pain in my knees and I could barely hobble behind George to get to my meds. It got better after I took the steroids but never went away, and would intensify before my next dose. It wasn’t fun, but it honestly didn’t alarm me… weird pain happens to me all the time so I stayed at the lowered dose that day. And then the next morning I woke from a dream where I was screaming in pain, to realize I really was. I had waves of pain from my hips to my toes and struggled to get up and out of bed, only to put my feet on the floor and discover I couldn’t put pressure on my legs. I couldn’t walk. The pain was too much and my muscles wouldn’t hold me… I got myself to the walker and sat on it, pushing myself on the walker to get my meds, all the while in more pain than my brain could process. It seemed to take forever and, in a word, it sucked.
I took my meds and waited for them to kick in and quickly realized that I should not have decreased my steroids. Yeah, I catch on quick like that. So I’m back on a higher dose and take it during the night as well to make sure it stays evenly in my system. Before you all start to type frantically in the comment section, I promise you I’m perfectly safe in my home, I have my Lifeline button if I need it and I have no intentions of doing anything different without being prepared on all fronts. Promise. :) I am, admittedly, dreading what will come when my dose changes, but whatever happens I will be thoroughly informed of what to do by my doctor and will be ready.
The reason I’m telling you about it is because so many have emailed to ask how I am and what is happening here, and I feel like I owe you the truth even if I don’t like how that looks. And I don’t like how it may worry you. And I don’t want you to feel bad for me. I’m also telling you so you can understand what I mean when I tell you that how I feel changes frequently throughout the day and makes writing consistently a bigger challenge than usual. But you should know the first thing I want to do in my moments of strength is to sit at this keyboard and type for a bit, even if it did take all week to put together this long post. :) And it’s lovely for me to know that you’re still out there when I do.
So, life has difficult times. That still doesn’t mean they are bad times… it just means we have to deal with what is in front of us when it’s in front of us. For now, I’m adapting to this challenge. I’m taking my moments that require rest, taking my moments that require me to challenge myself and push, taking my moments of sorting through the realities and taking my moments of joy in the middle of it all.
Oh, and taking lots of moments with this face:
So, now you know my day-to-day… hope you’re not sorry you asked. :) Know I really am dealing with this ok and my goal in life hasn’t changed: I’m simply going to fulfill God’s plan by living the best life I can with what I am given.
It just is what it is.