“I have been driven many times to my knees by the overwhelming conviction that I had nowhere else to go” – Abraham Lincoln.
I didn’t know what was happening to my body during my first flare up. By May 2018, I had already been to many doctors who had told me that the inflammation in my lungs were just due to my asthma working its’ way back into my life. God I wish that was the case. I woke up in the middle of the night in January thinking I was having a heart attack. A severe sharp pain was what I felt in my chest, as if a knife had just punctured my heart. I couldn’t breathe. Try to imagine trying to get air, but at the same time not wanting it because you knew that with each inhale the pain would only get worse. When I went to the hospital, the young resident told me I was just having anxiety and that I was fine. HA. Like I hadn’t heard THAT a million times before. I have come to the conclusion that a history of mental illness can be fatal if you develop a physical illness because no one, especially doctors, will take you seriously.
After a month of being on steroids from a pulmonologist, he determined I might have costochondritis, an inflammation of the lungs and surrounding area. And although there was no definite determining factor that brought this on, he believed it was because of the back issues I have. “Don’t worry,” he said. “It will never come back.” PHEW, that was a relief. But it did. With a wrath. When it did come back, other symptoms developed. Along with my chest grumbling, just like your stomach would be growling when it’s hungry… so much so that my boyfriend was woken up by the noise in the middle of the night, came flu like symptoms. Try for a second to go back to that time you had the flu. You know, the time you felt like you wanted to die from the amount of pain that came with the body aches? Now times that by 100. That was how I felt. I never imagined I could experience so much fucking pain.
After a short trip to my primary and some blood work, my ANA came back abnormally high. She was concerned. When I got the results from the bloodwork, I was getting on a train to the city with my boyfriend for my birthday. And I’m not sure what happened in those moments she told me that she recommend I see a Rheumatologist, but one thing I do know is that my intuition came into play the most it ever has. It was at that very moment that I just knew…life would never be the same.
That was May 2018. Now here I am, more than a year later sitting on my couch with my dog cuddling me, because she knows Mama is in a flare. I was diagnosed in the gray area of Lupus and Rheumatoid Arthritis a few months ago. So basically they are saying they don’t know what exactly I have, but it’s in the category of connective tissue disease.
Alright, so now that I’ve bored you with all this medical information, let me tell you a little bit about how I feel. In June 2018, after knowing something was seriously wrong, I took a ferry to Fire Island with friends. As I was coming home, I watched the sunset intently. I felt the beautiful breeze on my skin and the drops of water from the waves hitting my face. You know what the only thought I had in my head at that very moment was? “I’m really going to miss this.” Because I knew that life would never be the same, one way or another.
Since that time, I have had to learn to let go of the life I used to live. I am still grieving who I once was. I have lost friends who gave up on trying to hang out with me because of the many times I’ve had to cancel due to flares. I have jumped from job to job in hopes I would find one that would understand. With that, I have had to choose to work through the pain knowing a lot of times it was too much for my body, but also knowing that if I didn’t do it I would lose my apartment and my life all together. I have cried throughout the night knowing that no one can understand my pain, and maybe that means that no one can understand me. I have cursed, thrown things, and screamed when no one was around. I even have felt like my brain has been on fire, having thoughts I know no one else would get.
Sounds pretty depressing right? Well, yeah.. but please don’t let that discourage you if you're experience something similar. Because although this disease has taken over my body, it has not been able to take over my mind. In fact, my mind has just gotten stronger. I learned to meditate more often. I began doing yoga. I started seeing an amazing nutritional specialist/life coach, who is confident that we can put this inflammatory disease into remission. I started appreciating the vibrant colors of the leaves, the sweet smell of fresh-cut summer grass, the comforting touch of my cat’s soft fur, and the sound of the trees rustling in the wind. I’m sad a lot and I’m still coping with this idea that my life will never be the same. But God have I found out A LOT about myself. I am training my mind to be stronger than ever, even when it feels like my physical body is decaying. I am starting to appreciate the “little things” in life so much more, for they truly are the big things. So if you’re feeling like you will never be the same again, that’s okay. Because maybe you won’t. But maybe, just maybe, you’ll become someone better than you never imagined you were capable of being. For example, I have realized that I was just breathing my whole life. Well now I am living.
Follow my journey as I continue to discuss the amazing things that are happening as I grieve the loss of my old life.
Email me at firstname.lastname@example.org with any questions or comments.
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