Some of my Journey

Being chronically ill is demanding in many ways physically, emotionally, and spiritually. Countless emotions invade along with the pain. I never expected to grieve or to go through any of the other stages (denial, isolation, anger, crisis, depression, and renewal). I figured my life would go back to normal once I received the correct diagnosis and began a medication. Of course that is not what happened. Getting diagnosed was a difficult road, but it was not the hardest one. I thought I hit rock bottom with my health about two years ago. Unfortunately that low point was not rock bottom.

It has been a year and a half sense my official diagnosis of Systemic Lupus Erythematosus. Having an official diagnosis was a joyful thing for me and a relief. Shortly after I graduated high school then excitedly headed off to college three hours away from home. I had no doubts about the school I had chosen to attend. However, God had a different plan for my college journey. I battled pleurisy, which was a blessing because I began Prednisone. A few days after Thanksgiving, with only a little over a week left of the semester I had bloody urine. I later found out that it was caused by a kidney infection which lasted four months. The kidney infection was accompanied by stones for nine months. I thought I was beginning to stabilize. Then I had my infusion for Osteoporosis. Now I might have POTS, might need a biopsy, and my flare is anything but under control.

Most people enjoy thinking about their future. People my age dream about getting married, having children, their dream job, and traveling. Currently my future is so unclear. I cannot even think about a week from now, I never know how I am going to feel. Thinking about the future is scary at this point in time. Many questions cross my mind that I do not have answers to. Like how am I going to be able to take care of myself and live alone? How will I handle a major flare up on my own with a full time job?
With a chronic illness you realize how fragile life is. I have learned to cherish every moment I am with friends (which isn’t often), that I get to go to church, that I can walk, and I even cherish the times I am able to go food shopping. My memory has fade therefore pictures have taken on a new meaning to me. My perspective of life has changed drastically with being ill. With every struggle I see blessings. I am blessed in ways that I don’t always acknowledge.
This post is a bit all over the place. I guess I want my spoonie friends to know that you are not alone in the hardships of chronic illness. Over the past few months I have been very stable emotionally and doing well with taking things one moment at a time. However, today I feel overwhelmed. Coping is difficult. Living with a chronic illness is difficult, don’t let anyone else tell you otherwise. You will have great days emotionally and physically and you will have terrible days emotionally and physically. Bad days don’t mean you are weak, those days just mean you are human.

I pray that you would have comfort, peace, and strength for the days when the pain is too much to bare. For the days when your emotions run wild and you find yourself completely overwhelmed. I pray that your days would be pain free, beautiful, and over flowing with spoons. You are not alone. You have everything you need to get through another day. It will be okay.

Sending prayers, spoons, and hugs,



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