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Invisible Illness Awareness Week

1. The illness I live with is:

  • End Stage Renal Disease

2. I was diagnosed with it in the year:

  • June 6, 2002

3. But I had symptoms since:

  • I suffered from a disease known as IGA Nephropathy, which isn’t detectable by blood or urine test. The only way to discover the disease is by having a kidney biopsy. It takes 10-11 years for the kidney’s to fail due to this disease. So the disease started it’s work when I was around 10 or 11 years old. I didn’t show signs of failure till I was 21. It is usually never caught until the kidney’s fail. The disease also is efficient that if one was to have a kidney transplant the disease will also effect the transplanted kidney and start the process over again.

4. The biggest adjustment I’ve had to make is:

  • Being on dialysis 3 times a week. Each treatment is 4 hours long. 
  • I have the stupidest diet in the world which prevents me from eating just about everything I love. This is because most things are filtered through the kidneys and mine no longer filter so too much of certain things becomes toxic and can kill me. The major culprits being things high in Potassium and Magnesium.
  • I have to watch how much fluids I intake. I rarely pee, maybe once or twice a week. So all that fluid just builds up in my body. This is extremely hard if I want to go out with friends I have to not drink anything all day if I want to have 1 drink that night.

5. Most people assume:

  • That I’m ok I “look” healthy. I’m young and relatively in shape.
  • So people think I’m grumpy, shy or just quiet. I don’t feel well often, my body is constantly out of sync due to toxin build up. When in fact I just feel sick and it’s hard to pull out of that at times. 

6. The hardest part about mornings are:

  • I have to get up at 5:30 am to make my morning dialysis treatment. 
  • It’s hard to get out of bed when my body is achy from toxin build up.

7. My favorite medical TV show is:

  • Scrubs

8. A gadget I couldn’t live without is:

  • My iphone, it saves me during my dialysis treatments

9. The hardest part about nights is:

  • Insomnia, nausea, pain. It can be rather hard to get to sleep because I have one or all of these symptoms.

10. Each day I take __ pills & vitamins:

  • 6-10 pills 

11. Regarding alternative treatments I:

  • There are no alternative treatments. If I don’t receive dialysis I die. You can only live 6-7 days without kidney function.

12. If I had to choose between an invisible illness or visible I would choose:

  • I don’t want to choose, they each have their downside. It’s like saying would you rather be stabbed in the front or in the back.

13. Regarding working and career: 

  • I currently work freelance. Due to my dialysis schedule it makes it very hard for me to work full time. Not only due to the time constraints but due to I never know how I’m going to feel from day to day. One day I can feel absolutely fine and do many things then the next day I can barely get out of bed to brush my teeth. Thankfully I work as a designer so it’s a career that allows me to work from home.

14. People would be surprised to know:

  • I don’t know, maybe that I don’t regret having kidney failure. I think it’s one of the worst things to happen to me, but at the same time one of the best.

15. The hardest thing to accept about my new reality has been:

  • I can’t do whatever I want to do. I have to watch what I eat and drink. I have to be careful on exercise. I can’t travel, which is extremely hard being a free spirit. If I was to travel I have to prepare at least a month in advanced and I have to make sure i can receive dialysis treatments where I’m going. I get tired a lot. 

16. Something I never thought I could do with my illness that I did was:

  • I went to London and Paris and had the best time of my life.

17. The commercials about my illness:

  • None, it’s a disease that doesn’t get much attention even though it’s the 8th leading cause of death. Also with the high rise of diabetes the rate of ESRD will just get higher.

18. Something I really miss doing since I was diagnosed is:

  • Road trips

19. It was really hard to have to give up:

  • The various foods that I love. Sucks having to read labels all the time.

20. A new hobby I have taken up since my diagnosis is:

  • Yoga

21. If I could have one day of feeling normal again I would:

  • I don’t know probably eat everything I can’t eat now.

22. My illness has taught me: 

  • Patience, everything happens in due time
  • Compassion, everyone is hurting in someway. A little compassion goes a long way.
  • Appreciation, of everything I have and people in my life.
  • Life is precious, I almost lost mine when my kidney’s failed. I want to live life to the fullest because of it. 

23. Want to know a secret? One thing people say that gets under my skin is: 

  • It will be okay.
  • There are people worse off.
  • You don’t look sick.
  • I know it said one but there are a lot of these.

24. But I love it when people:

  • Take the time to ask how I’m feeling and see what’s going on with me emotionally as well as in my life.
  • Spend time with me when I’m not feeling well.

25. My favorite motto, scripture, quote that gets me through tough times is: 

  • "If there were no sunrise within, I would have set long ago!” — Rumi

26. When someone is diagnosed I’d like to tell them:

  • Things won’t be easy, and I can’t say you’ll be ok. It will be hard. But if you keep pushing forward in the end everything will work out.

27. Something that has surprised me about living with an illness is:

  • I have to learn to listen to my body. I’m not superman. I have to make sure I plan out my time and day otherwise I exert myself and I’m not able to do anything for the next couple of days.

28. The nicest thing someone did for me when I wasn’t feeling well was:

  • They just sat with me and held my hand. It was the simplest and kindest thing anyone could do. 

29. I’m involved with Invisible Illness Week because:

  • Because people don’t know. They are afraid to ask. Sometimes it takes those living with the disease to open the eyes of those living without.

30. The fact that you read this list makes me feel:

  • Happy, and impressed you got this far. I hope it’s a little more insightful into those living with Kidney disease. I think a lot of us are really good at faking how we feel. If you do encounter someone with ESRD just know that they are trying really hard to love a normal life.