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Eve's Blog: Suviving FSGS & CKD

evelyneileencawley@yahoo.com

#32 "THE" Big Talk

Well, my husband and I had the big talk. He tries to avoid this conversation, but truth be told, everyone should have this conversation with someone in their lives, family or inner circle. You never know when it will become important.

I'm not talking about childhood bullies. Nor teen pregnancy. Or living in sin. We had the conversation about Death.

Since my FSGS diagnosis in March 2012, I've lost 4 online support group friends due to complications of this horrible disease. One passed from Steroid Toxicity. Another from infection. Another, pnuemonia. And another, anaphylactic shock from a reaction to medication.

Just to put some perspective on, the man who passed from Steroid Toxicity was taking the exact same dosage and the exact same medication that I was taking at time. Earlier this year, I was diagnosed with H Pylori bacterial infection and hospitalized with pnuemonia.  Death can happen to anyone at any time. To think that you can't die unexpectedly is ignorant bliss but ignorance just the same.

So I wrote letters to my loved ones that they will recieve when I pass.

I identified items that are to go to certain people upon my death.

I went so far as to write my own obituary, corral photos, select songs to be played, clothes and flowers to be used for my funeral.

Then I sat Terry down and we talked about it. I wanted him to know where to find the file, the letters, the photos, everything he needed to bury me. I did this because I could die. I could have a blood clot, an anuerysm, a stroke, a heart attack. I could get an infection. Or I could die waiting for a kidney. I could die. It could happen tonight. Tomorrow. Next week. Next month. Or next year.

You may think this sounds morbid, depressive or even overreacted, but I know what it feels like to plan a funeral. I know what it's like to wonder if he or she would like this photo or song, or how we didn't want to hurt someone's feelings because they were left out. It's a lot of stress. And you don't have a lot of time to make those decisions. I decided I didn't want Terry or my family to have to haggle over it. I decided I wanted to give this gift to my family. If something happens to me, everything has been decided. There's no doubt. No worry.

I don't want Terry worried about final arrangements. I want him to do what he needs to do. Mourn.

Yes. I'm 40 years old and I have planned my funeral out to the last detail. I give this gift to my family because I love them don't want that burden placed at their feet. I hope I have a long time before they are used....but if not, then, it's done.