I’m always on the lookout for other bloggers who are dealing with CKD or PKD. It’s honestly tough to find them. One of the reasons I began this blog was to share how I deal with my poly-cystic kidney disease and how I am doing over time. It is also a reminder to me of how I have progressed, or digressed.
Having a disease that really doesn’t show means people can judge without knowing anything. I have a big middle. It’s not necessarily because I eat junk food and make no effort to control myself (but I do those things occasionally ;), it is because my kidneys are growing uncontrollably. So what to do? Wear a sign?
I often read about young people – like in their 20’s – who are facing, or have already faced, kidney failure. My heart goes out to them. I’ve had a long life already and spent most of my years oblivious to the workings, or deterioration, of my own inherited defective kidneys. Fortunately I had a friend who was a health guru and she set me on a better path long ago – way before my PKD diagnosis. So I was trying to be “good” before I knew I had a problem. That may have helped me in the long run.
But there was always something about being me that was bothersome. I worried about my health. Maybe it was because I had 4 children and I was pretty much all they had. I simply HAD to be around for them until they grew up. I worried a lot about disease. But my kidneys never came to mind.
I understand how difficult it is to have a disease that others don’t understand, and don’t care to. If you have a partner or family who supports and encourages you… be thankful! Many of us have no one. Or so I think. I can only speak for myself, but I know that I am can’t be the only one who is alone.
When I discovered that my PKD was hereditary, I told my children that I had it and was worried for them. I never found out who in my family had it to pass on to me. But I don’t have much family. None of my children think they have it, and I hope that is true. They are all grown and at ages that where it would probably be showing up.
They feel fine, so they moved on. Seldom, if ever, do any of them ask me how I am doing. I understand, because I seem to be doing fine. I don’t want them to worry either, so I wouldn’t complain. If I did, what would that get me?
My waistline increases always due to the cysts growing, and buying clothes has become difficult for me. My pants are tight and that is my problem. I feel like a stuffed potato all the time… from the moment I wake up in the morning all throughout the day. This is my problem to deal with. No one can deal with it for me.
I learned a valuable lesson a few years ago that made me able to accept this disease as MY problem alone. I lost everything at the age of 50 due to a lying, selfish husband who gambled away our future. Silly me, I thought people I knew would rush to my aid. Instead I got pity and prayers and absolutely nothing substantial to really help me. That is when I first accepted that I was alone in this world.
It took years for me to be able to forgive my friends for not understanding. But no one really truly understands another human beings problems unless they are in that situation themselves. It’s why veterans of wars have such a tough time. Those of us who have not fought in a war can’t possibly understand what they dealt with. None of my friends could possibly understand being all alone in this world without a home, without family, without money and without anyone willing to lend a helping hand. They were not homeless. They were not poor. Every one of them had someone, or lots of someones. I forgave them because how could they possibly understand?
I clawed my way back to life by myself. Strength I never knew I had popped out in me. I became resilient and determined. I did it on my own. Little did I know I would use this same understanding to deal with a disease as well.
Shortly thereafter, the diagnosis. Incurable. And now I have a disease that others don’t understand. I don’t expect them to. I’m in this alone, but I am with the ones like me who have PKD / CKD too. I don’t see you, but I know you are out there.
Accept being alone in this and move forward. Do your best to be healthy and stay strong. Each day can be a battle won, but tomorrow there will be more fighting.
When you are at your worst remember that WE are out here struggling right next to you. You are not alone.