Monday, April 21, 2014

Life Is Only a Reflection of What We Allow Ourselves To See

Today's Health Activist Writer's Month Challenge topic is about reflecting: This is a day to reflect. For the WEGO Health family, we reflect on those who lost loved ones in the Boston Marathon Bombing last year and hope for a bright future for those impacted. Reflect on your journey to this day, what are your thoughts and hopes for the future? 

Reflecting is something that I'm good at. Something that I do almost daily. Reflecting is good for the soul, even though sometimes when you are reflecting it makes you terribly upset and sad. I believe that if you have a chronic illness reflecting is something that you have to do to stay grounded. To keep your feet firmly planted on the ground. To grow deep roots of strength, integrity, compassion, contentment, and peace with the situation you are in at the current point in your life. 

Becoming deeply rooted and standing on a firm foundation are not easy things to do when you have a chronic illness, but they are absolutely necessary. 

The late Nelson Mandela that perfectly displays my thoughts on reflection: 

When you have a chronic illness, it is absolutely imperative that when you are reflecting you are reflecting on your hopes not your fears. I remember being 24 and at the start of this chronic illness journey and finding out I had celiac and ulcerative colitis. Learning that I would have to have IV infusions every 4 weeks for the rest of my life, or take out my whole colon immediately. But, hey, the infusion medication has an 85% chance of causing non-hodgkins lymphoma so you have to get your blood drawn every month too so that we can make sure you don't have cancer. So far I haven't and I've been on it for almost 4 years now. But still. I was 24, couldn't eat any of my favorite foods anymore, or drink beer, and was forced to take a medicine that might kill me. I thought I was the sickest person on the face of the planet.

Who knew everything that was coming next. When the colitis and critical potassium deficiency landed me in the hospital for 13 days and the doctors told me I couldn't live on my own anymore I had to move back to Indiana with my mom from North Carolina, where my whole life was and I was devastated.

When I got up here, I shortly there after found out I had fibromyalgia and then dysautonomia was formally diagnosed that summer (though it had been suspected since the previous October). Fast forward another 1.5 years and I get my Ehlers-Danlos syndrome diagnosis 3 days before I leave to be admitted to the university hospital in our state capital to have every test known to man run on me. They found that the temporary NJ tube that was put in me was working so well I got a permanent surgical J tube placed and while they did that they also did a stomach muscle, small intestine muscle, and thigh muscle biopsy and placed a port for easier IV access because I had been poked and prodded so much through the years + the combination of EDS my veins were shot. Then when I followed up with the metabolic/genetic doctor December 30th of last year, I got my diagnosis. I finally had answers as to why I felt bad all the time. Unfortunately, it was complex I, III, and IV deficiencies which means I don't make energy very well if at all in those 3 of 5 complexes in my body so that is why I'm tired all the time. I also came back positive for something about my cells don't convert to oxygen from carbon dioxide or something like that so that's why I have so much muscle weakness and atrophy. 

I have crazy symptoms, day in and day out. Way too many to list. But the big hitters are sensory issues (smell, touch, sound, and sight are the worst), chronic pain, joint pain, swelling, flushing, crazy high/low blood pressures and heart rates, thermoregulation issues (I take on the temp of my environment so my body temp is often extremely low if I'm in AC), dizziness, tachycardia, syncope, dehydration, and insomnia (writing this began at 4:30 in the morning because I was wide awake), and many more symptoms. 

When I look back to before all this, I realize how selfish with life I really was. I never took advantage of life while I could have taken advantage of it. I was stuck up and thought life sucked. I didn't take care of myself. I did stuff just to be cool. I was always striving to be someone else. I was never trying to be me. Looking back, I never realized how blessed I was. How lucky I was to be so healthy and have such a perfect life. 

Throughout all this though, I have remained positive. I have joined support groups. I have laughed with doctors and nurses. I have become several docs and nurses favorite patient. I have laughed at my own conditions and the murphy's law they often come with. I have had good days. I have had bad days. I have cried. I have screamed. I have been mad at God. But I have praised Him too. And I realize that even though I'm chronically ill, I am blessed beyond belief (with good doctors, nurses, and a support system) and my illness is in some ways a gift from God to help spread awareness to others.

And to close it out, lyrics for one of the best songs ever, that helps people remember who they are:  
"Mirror, Mirror on the wall, Have I got it?‘Cause Mirror you’ve always told me who I amI’m finding it’s not easy to be perfectSo sorry you won’t define meSorry you don’t own me 
Who are you to tell meThat I’m less than what I should be?Who are you? Who are you?I don’t need to listen To the list of things I should doI won’t try, I won’t try
Mirror I am seeing a new reflectionI’m looking into the eyes of He who made meAnd to Him I have beauty beyond compare I know He defines me"

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