Monday, March 11, 2013

30 Things About My Invisible Illness You May Not Know

Feel Free to do this list yourself, it is kind of fun and I got the idea from here Tami Stackelhouse


  1. The illness I live with is: Sarcoidosis.
  2. I was diagnosed with it in the year: 2009.
  3. But I had symptoms since: 1991.
  4. The biggest adjustment I’ve had to make is: The loss of my strength and the need to ask for help.
  5. Most people assume: There is nothing wrong with me because I look well on the outside.
  6. The hardest parts about mornings are: Just getting up and going to the bathroom
  7. My favorite medical TV show is: House, I like it when they say sarcoidosis.
  8. A gadget I couldn’t live without is: My Computer, my lifeline to the world.
  9. The hardest part about nights is: The fear that is kept at bay during the day will creep in at night and I will wonder if I will wake up or whether I will leave my wife alone.
  10. Each day I take:  20 different prescriptions, some pills, some eye drops, and some inhalers.
  11. Regarding alternative treatments I: I am not opposed to them but unfortunately I have had enough of a college education that I can not believe in the ones that make completely false claims, i.e. ionic water (whatever).
  12. If I had to choose between an invisible illness or visible I would choose: I would choose a visible one, it is frustrating not having the instant understanding that seeing creates.
  13. Regarding working and career: Three years since diagnosis I have become ill to the point where I can no longer work.  This was a huge blow, a lot of how I identified myself was wrapped up in working and now I am struggling to find out who I am now.
  14. People would be surprised to know: That my wife and I have decided not to have children because of the demands and uncertainty that sarcoidosis has created.
  15. The hardest thing to accept about my new reality has been: The lack of being able to have people lean on me and needing to lean on them.
  16. Something I never thought I could do with my illness that I did was: Is being patient with myself, giving myself a break.
  17. The commercials about my illness: There are no commercials about my disease because it is too rare to have any drugs developed for it.
  18. Something I really miss doing since I was diagnosed is: Drinking beer, I love beer and the drugs I take for sarcoidosis do not mix well with beer, i.e death.
  19. It was really hard to have to give up: Independence
  20. A new hobby I have taken up since my diagnosis is: Blogging and Twitter.
  21. If I could have one day of feeling normal again I would: Drive, I loved to take a long road trips.
  22. My illness has taught me: First that most people are scared of dying to the point where they will avoid you when they find out you are sick.  Second the few that are not scared are the most wonderful people in the world and I feel like they are the everyday saints that do not get enough credit.    
  23. Want to know a secret? One thing people say that gets under my skin is: You should see a specialist.  Thank you that thought had not occurred to me in the past three years.  I have seen several specialists and despite what TV has taught us there is sometimes no fix for a disease.
  24. But I love it when people: Visit and allow me a few hours of normalcy.
  25. My favorite motto, scripture, quote that gets me through tough times is: It was human love that helped me to understand divine love. Human love at its best, unselfish, glowing, illuminating our days, gives us a glimpse of the love of God for man. Love is the best thing we can know in this life, but it must be sustained by an effort of the will. It is not just an emotion, a warm feeling of gratification. It must lie still and quiet, dull and smoldering, for periods. It grows through suffering and patience and compassion. We must suffer for those we love, we must endure their trials and their sufferings, we must even take upon ourselves the penalties due their sins. Thus we learn to understand the love of God for His creatures. Thus we understand the Crucifixion. Dorothy Day
  26. When someone is diagnosed I’d like to tell them:  Relax it will probably go away on its own, do not fixate on the possible outcomes.  Focus on the now.
  27. Something that has surprised me about living with an illness is: How strong my wife is.
  28. The nicest thing someone did for me when I wasn’t feeling well was: Bring me a nice veggie sub and watch a movie with me and for two hours and we pretended nothing was wrong.
  29. I’m involved with Invisible Illness Week because: I have an invisible illness and I am hopeful to bring awareness to it.
  30. The fact that you read this list makes me feel: Honored that you took the time and brings me some joy.