Day 6- Im going to share a few excerpts today from my journal. They are real feelings, real pain, & real thoughts. I am sharing these so that those that dont have this disease may get a glimpse of the additional battles we face (its not just a bathroom issue),the strengths we must find from down deep & so if someone is battling they will know they are not alone! I have never before been more aware how significant it is to take a breath of air day in day out minute after minute then I am now. You would be surprised The breaths I wasted over the years just rambling with girlfriends about random nothings, The gulps of air Ive taken in over the span of time to raise my voice in frustration, The exhales from the years of smoking (which its now been 9 months since Ive quit), The amount of air Ive used to talk, sing, even motivate myself over the years, Then there are the breaths that I dont regret- The I love yous, every praise that has every left my lips, the gasps of joys, the songs sung to the children in my life, the words said to others in their time of need, the laughter, the late night whispers. Over the years, I have learned many lessons one of which being never take the small things for granted. I still get butterflies every time my hubby takes my hand. My heart swells with every I love you my teenage takes the time to say unprompted. My daughter is constantly showing me new fashions and making me giggle. I cherish all these things and more. I always felt I had learned this lesson well. I never knew how much I would miss the ability to inhale deeply without pain or inhale at all without pain. I am not going to point fingers or play the blame game for it would do no good. Many things could have caused this - The missed dose of medicine caused by Aetna denying my meds again, my oral surgery ending up being very extensive, reaction to antibiotics, my Crohns disease itself. Long story short- Ive developed lots of nerve pain. My nerves have bundled into nickel to half dollar size balls along my ribs, upper back, & spine. Each breath, each movement, every touch causes unbearable pain. Thursday, we will discuss options concerning the nerve pain. I have never felt so exhausted, so raw with emotions, so worn out, in such pain, & so tired of constantly battling this disease. The pain is almost unbearable. It is getting harder and harder to hide it from the world. So many moments throughout the day those dark thoughts try to creep in again of places where there is no pain. I have to force myself not to cry constantly but, the pain surrounding my ribs to my back makes every breath a struggle. Ive lost my sunshine and I dont know how to get it back. Every doctor just sends me to yet another doctor so now Im on a list waiting for an appointment with a rheumatologist. I feel all used up & have nothing left to give. I pray constantly that God will give me just the strength to get through the day without letting anyone know how bad I hurt or feel. Standing on the verge of a crossroads One path leads down to more & more pills, dr visits, sleeping to escape the pain The other path is harder for it takes every ounce of strength I have left in me, lots of prayers, tears, & gritting my teeth as I climb back out of this dark place. My story isnt done and I know my journey is meant to touch lives, let them know they are not alone & it is okay to have bad days as long as you find the Miracles, the Blessings, the Hope & the Desire to continue forward. It is a harder road for you definitely because it is simpler to give up, fade into the background, waste away little by little till you can even recognize yourself. It take constant dedication, renewing your determination daily, placing your faith in Gods hands knowing he has painted the masterpiece of your life. he will guide you through it all if you allow him too. It also takes a good balance of allowing your body the rest it requires and forcing yourself to get up even when you dont want to. #IBDAwareness2014 #FightingEveryday
Posted on: Sat, 06 Dec 2014 13:48:05 +0000
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