Sitting in the ER this morning and having this conversation with the doctor, my eyes glazed over a bit. Hearing these things can be daunting! I live on earth so avoiding these things is almost impossible! That's what I shared with the doctor. His witty response... "A collapsed airway will change your mind." Ok, this just got real.
This disease is not "mine"...I don't claim it, take ownership of it or see a future with it. It is simply something happening to my body right now and it may be slowing me down a bit, but I refuse to become it. Maybe I live in a fantasy land, but God has given me some peace with this disease following me around for a while. With that being said, it is a very real disease, doing very real and progressive damage to my body, and it requires attention. Too much attention this past year.
ER visits are never fun, but I especially dread it when the Relapsing Polychondritis is flared up. Most doctors have never seen a case of it and have to quickly research it before deciding what to do. That's a scary thought - me educating the doctor?? When the ER doctor tried to give me a particular pain pill, I had to remind him it interacts with my medication. His response. "Oh, you're right, we should avoid that". Not very comforting for the patient!
Not being able to let my guard down can be downright exhausting, yet also gives me a sense of control that is often lost to autoimmune patients. Afterall, our immune system is kicking our own backside so it's kind of hard to feel in control when that is happening! As a patient, you begin to recognize the flare ups often before they are detectable in bloodwork/imagining, etc. This time my symptoms were brewing for a while, but the perfectionist in me just wanted to push through. You know, wait just another day before resorting to the heavy hitter medications. Maybe it will pass on it's own. That was a mistake on my part!
I just get tired - tired of the doctors visits, the decisions about the medications, missing out on many social activities that I love, tired of waiting for remission.
AHA!! Wait? Why wait? Remission may never come. Well, I certainly like to think it will come and deep in my heart I do feel it will. In the meantime, this is my life, my husband's life, my children's life... and we all need to live it and live it well!
So, increase the prednisone? OK, let's do it. Rest? Ok, let's do it. Avoid sick people? OK, let's do it. Avoid stress? Ok, let's do it.Well, I'll try. Then again, is too much pressure to not stress causing stress in itself?? lol! That's the life of an autoimmune patient. Those of you walking this same path know why I mean. It's like walking on a tightrope.
The one thing they didn't say is "Trust God". That's not something you'll likely ever hear in a hospital setting because they aren't allowed to talk about religious beliefs with patients. I am certain it would have felt really great if my doctor said that. Just a simple statement of hope and reassurance. God is so good though and on my way home, exhausted, I thought I'd make one stop at the grocery store to buy some easy to make things so I could squeeze in more rest without starving my family. To my surprise, I ran into a fabulous friend from church and we chatted for a bit. Now, keep in mind, I go to the grocery store about 5 days/week (sounds crazy, but I love fresh produce!) and have never run into her. AND this wasn't just anybody, this was someone who lives her life for the Lord. I would say that was a divine meeting. When she walks into room, you almost can see light around her. I never hear anything come from her mouth that doesn't feel like it's straight from the Lord. As soon as I saw her, I smiled inside, knowing God has this handled. We chatted a bit and although the conversation was light, it lifted whatever last bit of weight I was carrying from the hospital visit. Thank you Lord...and thank you Jenny. :)
Getting well involves so much more than doctors, medications, eating clean, etc - it’s a journey. A journey to learn to trust God to heal your spirit, to show you His peace and His healing, however that may come. Sometimes it's spiritual or emotional healing, but not physical healing. We have no way of knowing how, when or why healing will come.
I would love to be in an instant remission, but I'm not and for now I have to accept that. Although I am home resting, that doesn't mean I can't be productive. The Bible teaches there is a time for rest! Well, I guess God has decided this a time for rest for me. How I use that time is up to me.
This time I'll dig a little deeper. I'll set aside the books about Autoimmune illness, diets, recoveries, miracles, etc. I'm going to dig deep for healing. Take a look at my pride, sins and fear. I'll break out my Bible, my journal and maybe a cup of tea and let God work in me.
So, that's what Graceful fight is all about. Do what you have to do to handle the body - fight your illness any way you need to, but do it with God's grace. So, yeah, I have my veggie juice and smoothies, fish oil, probiotics, medications, doctors, etc...but I also have something bigger: God and His plan.
Next time you find yourself stressing about your illness, take a moment to think about what I've said. Is obsessively trying to heal your body causing you more harm? Stressing you out? Making your head spin? If so, may I suggest you take some time to work on yourself spiritually and emotionally? Seems to me that is when healing can come, on so many levels.
xoxo,
Linda
Trust in the LORD with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths. Prov. 3:5&6
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