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BEAMS OF LIGHT

Look for the Magic

Some days are better, some days are worse. Look for the blessing instead of the curse. Be positive, stay strong and get enough rest. You can't do it all, but you can do your best.

 - Doe Zantamata

 

MY STORY

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I have dealt with pain for 15 years already, passing the half-my-life-with-pain mark now being 26. It started with me being born with twisted leg bones and not learning this until I was 13 after sharp pain in my knees started from my twisted bones grinding on them. 2 years later I had waist down reconstruction surgery. The left surgery went well. The right surgery did NOT. The epidural didn’t work (later finding out it was because of my Ehlers Danlos Syndrome) and my nerves were rewired from the extreme pain via my bones being broken in 4 places and then twisted to straighten them. I was diagnosed with Amplified Musculoskeletal Pain Syndrome (AMPS) which was full body with all the types of pain there are-extremely rare meaning no one understood and I was alone in my unique struggles fighting to teach others all I could. I learned to ignore the pain so I could try and live a normal life, but it got so bad my hands no longer would work from the excruciating pain. I barely made it to graduation, failing my last quarter of school(although I had straight A’s up until then). Luckily my ranking was 4th so I still graduated with my special extreme pain and with help from others who had to write my finals for me. Pretty quickly I was bed-bound and dreaming of hospitalization so I could have strong helpful medication to ease my molecular deep resounding aches and pains. Flash forward to 3 years later when I was miraculously healed over-night. I thought I was free and worked on gaining back all my muscles that were atrophied. But then my pain came back and began rising ever higher and even faster than before. I joined a site for people with physical and emotional/mental struggles for freedom to express my struggle held deep inside for so long with a smile on my face and not even my family knowing what I went through. I never realized how glorious it was to be open and now I refuse to go back. My sense of peace demands to no longer have a fake smile on my face and those feeling alone with no one to understand their unique struggled deserve a voice that I can give them through my writings as well actual useful help from someone who has suffered and overcome.In full I am now diagnosed with severe Ehers-Danlos Syndrome, Amplified Musculoskeletal Pain Syndrome, Severe Fibromyalgia, Severe Gastro Esophageal Reflux Disease, Hypothyroidism, Endometriosis, POTS, severe Insomnia, Asthma, Chronic Fatigue Syndrome, and worsening Lupus as well as Juvenile Arthritis. (My extreme pain has reached a point where it naturally-and unsurprisingly-causes suicidal thoughts and occasional depression although my soul-deep gift of optimism does a very good job of holding those back and lessening their severity and length of episodes.)It is SO freeing to know that the reason for all of my pain is because of my many overlapping diagnoses. I am currently working on filing for disability and have lost my dream of Interior Design to keep me warm. Also dealing with blisters covering my scalp and making it ridiculously tender with serious GERD and acid reflux problems due especially to the EDS. Constantly focusing on not throwing up each second is my new normal. Swallowing 10 times per first swallow is becoming habit. Food and drink take 4hrs minimum to at last leak down to my stomach. Probably my almost complete lack of hand-use is the most annoying part though. Technically Miserable but still I will fight on, savoring each moment and smiling at each thing that lifts my burden a little. Life should be cherished, no matter how pain-filled. And life deserves to be enjoyed not just survived. And with my keyboard at ruined and failing finger-tips, I will carefully walk into the world with my shoulders back, face to the sun, and hope in my heart with a wish to lift a few fellow down-trodden(walker or wheelchair dealers choice). We got this!!!!

 
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