Graceful Fight

Navigating faithfully though life with a chronic autoimmune disorder...the journey to true healing.

Wednesday, August 27, 2014

A Life Changing Emergency Kit (and post stem cell update!)

There are so many types of Emergency Kits.  If you've watched the news recently, you've likely heard frantic people talking about Earthquake Survival Kits. If you have children in school, you've probably sent an Emergency Pack for your child and have a First Aid Kit at home.  If you drive a car, I'm sure there's a spare tire hidden somewhere.  Even something as small as damaged eyeglasses are often prepared for with an Eyeglass Repair Kit stashed in a drawer.

But what about preparing for the all too common waves that are guaranteed to crash in the ocean of life at some point? Illness, loss of a job, death of a loved one...just to name a few.


I know a little something about this! When the waves of illness came crashing down on my life 5 years ago I was not prepared. I had a fantastic childhood, a great family & great friends and a rewarding career. Even having everything desirable according to society standards, I was not prepared for what came my way. Although I was able to offer an outward smile, many days were tainted by the internal struggles that led to night time tears. I never learned how to cope. There I was, in the biggest storm of my life, and no Emergency Kit. There was nothing I could cling to treat the fear in my heart and no bandaids for the hopelessness that ate away at my soul.  I relied heavily on my own strength, trying to awaken the "good attitude" I always had. It was isolating and exhausting.

I'm sure my ego preferred I avoid the vulnerability it took to call on God, to reach out to family and friends.  I chose a path that has taken more courage and humility to look honestly at myself. To make changes to my behavior and allow for change.

After several years of walking a tightrope and barely hanging on, I thought this can't possibly be my life now! There has to be something more.

I made many changes in my life over the last few years. The biggest change is I began going to church and eventually developed a relationship with God. That answered the question about "something more" for me and has forever changed the course of my life in the most miraculous way. I also invested more into relationships with people, making true connections. I started writing in a Gratitude Journal even on the days I took me hours to find something I felt thankful for.  I also got down to the basic foundation of modifying sleeping and eating habits. I grew tired of all the traditional doctors,tests and medicine so I found natural therapies such as Acupuncture to help during the more stressful time.  Little did I know I was building my very own Emergency Kit! One that would come in handy over and over. It is an Emotional/Coping Emergency Kit of sorts.  It's what I have clinged to for more than just survival, it has brought me to a life of joy again.

It is also more practically, what has kept me in a really good state of mind during a really terrible week!  After months of excitement building up to my Stem Cell treatment and experiencing a fabulous week of normalcy after the procedure, BAM! A Relapsing Polychondritis flare. A flare in this disease can mean many things, but for me right now, it means painful joints, muscles and tendons from head to toe, spine and neck pain leading to a headache, neurological symptoms such as twitches and more pain, loss of appetite, eye pain and inflamed, blistered cartilage in the ears. OUCH. That may all sound terrible and it certainly is, but thanks to my Emergency Kit, it's doable. Imagine adding a complete broken heart, lonliness, fear, insecurities and defeat!  In the past, those feelings would have been added to my already tough list of symptoms and consumed me.  I'm thankful that I have my Kit and that I've learned how to manage this illness in a way that allows me to enjoy life even on the worst days and I mainly just feel affected physically.  I'd be lying if I said I am never afraid. I feel the fire of fear often actually, but I have learned how to put out the flames quickly.

I was pretty emotional when I arrived at the doctor's office yesterday. I was in a lot of pain and the inflammation in my ears reminded me of a scary movie, worsening right before my eyes. I was disappointed in myself for feeling emotional, which made it a vicious cycle. I prayed and asked God for help, instinctively I asked Him to help me be okay with whatever His plan was. A peace quickly washed over me and we got down to business.

My doctor had a guest doctor visiting from Portland, a well respected Chinese Medicine Doctor/Naturopath so I was very fortunate. They both agreed I was in a flare that needed to be managed but that treating it naturally was ideal to allow the Stem Cells to keep working in the proper environment. They explained that the very cells that will be helping me are causing the flare. As long as we can control the flare, it's actually a GOOD thing. The cells are stimulating my immune system (although too much) and they'll soon learn their mistake and begin modulating my system. It's training ground for them in a sense and more common than not in treating Autoimmune Disease. He treated me with acupuncture yesterday and suggested that I rest for a few days in an effort to calm my system and avoid increasing any pharmaceutical drugs. My doctor said it will be a "saw toothed" approach with me. That means expected ups and downs as we work toward our goal, but at least with my Emergency Kit, the ups and downs should mainly be physical which is far more tolerable to me (and my family, lol!).  He expects if all things go well, my system will begin to regulate (partially) about 2-6 months post stem cells, so I have a ways to go! Since I'll be repeating the procedure one to two more times, it will be a long road but i'm ready! Well, maybe it's time to develop more patience - I could certainly add that to my Kit!



Are you prepared for the storms that will come in your life? You are far more likely to experience pain, loss and fear than experience a natural disaster so if you've taken care to prepare for the next Earthquake or broken eyeglasses, maybe it's time to evaluate how ready you are for anything else life can throw at you.

What's in your Emotional/Coping Emergency Kit?


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