I don’t know where to begin…
by Elouise
So I’m just going to blunder along for a bit. Which is, I’m told, the best way to begin. I think Eeyore would agree with me.
I’m a total novice when it comes to Chronic Kidney Disease (CKD). It wasn’t on my horizon and it isn’t in my family of origin.
But that doesn’t matter now. I have it. Stage 3A. In fact, I probably passed ‘Go’ well over a year ago without even knowing it.
So here I am. Floundering around, lurching through each day with emotional highs and lows, energy highs and lows, eating highs and lows, and little sense of overall wellbeing.
High means I’m upbeat, alert, happy to be alive, and at peace with my body. Giving happy hugs to D.
Low means I’m virtually asleep, can’t move a muscle including my brain, and don’t want to look at another healthy smoothie or make another easy-to-chew soup or stew. Weeping silently or openly. Collecting hugs from D as needed.
Do I feel sorry for myself? No, I don’t. Nor do I ask God, “Why me?” There are millions of us out there with this disease. What I regret is the relative invisibility of the disease—often until it’s too late.
Which raises the question of my status. You might think Stage 3A out of 5 stages is fairly decent. Answer: It is and it isn’t. It’s better than Stage 3B. That’s when you start talking about what’s coming in Stage 4 (preparation for the end game). Followed quickly by Stage 5 (dialysis, kidney transplant and, sooner or later, death).
At Stage 3A I have the possibility of leading a different yet fairly ‘normal’ life. That means constant attention to self-care, lab tests, and endless appointments with various doctors. Some people are able to reverse the progress of CKD, but it’s rare at Stage 3. Difficult but possible at Stage 2; often possible at Stage 1.
So what’s the solution? For me, I’m in a crash course I didn’t want. That means reading books, finding online resources, talking with family members, facing the reality that this is a terminal illness for which there is no magic pill. And of course, writing about it, especially about how I’m feeling.
It also means reordering each day as it progresses. Do I need to take a little nap? Meditate? Write my heart out? Do nothing but sit on the porch listening to the birds? Listen to music? Take a little walk? Have a good cry? A good rant?
This is an invisible disease. If you could see me, you probably wouldn’t know anything’s amiss. Most people without CKD haven’t heard much about it, think they won’t get it, or don’t know how to determine whether they’re at risk. Yet millions of us have it. Go figure.
I’ll post more from time to time. Not necessarily because you need to know, but because I want you to know and it helps immensely to write it out and make it public.
Thanks for visiting and reading!
Elouise♥
© Elouise Renich Fraser, 1 May 2017
Image found at pinterest.com
Response to WordPress Daily Prompt: Apprentice
I am sorry you are going through this. I too have an ‘invisible’ disease – and I can tell you that writing helps and discussing it publicly helps. What a very poignant post.
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Thank you, Irene, for this wonderful comment. I’m glad to meet a sister-traveler (of the ‘invisible disease’ sort!).
Elouise
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I feel sorry for that Elouise. I don’t know anything about the disease. But, Is it curable?
I just hope you will be okay.
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Hi, Yoris. Thank you for your kind comment. If the disease is caught very early, it can sometimes be turned around. There isn’t a medical cure for it. However, there are things that can be done to slow it down and make life as normal as possible. Thanks for asking!
Elouise
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It is a relief to pour out how you feel. There are many praying hands for you to be strong and brave
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Thank you kindly, Namrata. Yes, it is a relief. And thank you also for praying. I’m praying I’ll have patience with myself, especially when I’m feeling down. And that I’ll have courage when I must make difficult choices.
Elouise
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Bless you
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Sorry that you have to go through this, keep your head up!
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Thank you, Lexie! Just reading your comment lifts my spirits, if not my head. 🙂
Elouise
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Glad I could make an impact!
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You’re a strong inspiring women, just by reading this. Thank you for the positivity despite what you’re going through. May light shine through and you give you peace of yourself. Sending positive thought and love your way, hun 🌹
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What a kind comment. Thank you for sending your encouraging words and positive thoughts…and the red rose. 😊
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Nope, am Not going to hit the “like” button on this one…..oh E, if it isn’t one thing it’s another, I’m sending love, hugs, umpteen million prayers, more love, an ear to listen, and anything else I can do to “sit beside you in these tough moments” hang in there, it’s never over till it is and I for one am not giving up hope. Miracles happen, and I’m here for you, always, Kim☮🕉🙏🏻💜💙💚🌺💐🌸
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I totally get it about that button. WP needs a second option! I don’t know what, but….I finally decided I would implode if I didn’t write about it. It now is for better and for worse, part of my life. And yes, the stuff we didn’t see coming….I’m not going to give up hope either. In the meantime I’m beyond grateful I’ve been blogging about my life. Somehow it’s all going to come together for good, if not without anguish and heartbreak along the way. I’m blessed to have you among the survivors of tough times who understand the shock–from the inside out. 💕💜🦋
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Elouise, thank you for opening up your heart and sharing your thoughts with us. I pray that as you (and D) walk this new path you will enjoy many, many good days and experience comfort and encouragement and love on the days that are not. ❤
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Thank you, Kathy, for your prayers and encouragement to both of us. It’s always good to hear from you and see you at church. 😊
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That was heartbreaking to read and very poignant. I send you loads of hugs and congratulate you on making people aware of this horrible disease. You are right about writing helping you deal with sad situations. It takes away the total isolation of grief you feel you might drown in sometimes; it’s nice to know there are others out there ( even if you don’t know them) who care.
💜🐻
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Thank you for this encouraging comment. Your description of the way writing helps us get through tough situations is so true. Thanks for being one of those out there who cares! 💜🙏🏻
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Wishing you all the best! Take care.
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Thanks, Herminia. I’m storing some of your best wishes up for when I need them again! 🙂
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It’s difficult, treading a line between knowing about something and giving in to it. Thank you for sharing your insights about CKD and about wellness in general. I wish you all the luck in the world, navigating a new landscape, while looking up to admire the view too. ((xxxx))
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What a great image-‘navigating a new landscape, while looking up to admire the view too.’ I’m also pondering your opening distinction–the balancing act between knowing about something and giving in to it. I definitely don’t want to give in to it–more than necessary in order to take care of myself. Still, it’s daunting to think of myself with CKD and what this means for the way I function now and later.
Love and hugs,
Elouise
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