A few years ago after I had accepted that I would be a dialysis patient for a long time because there is no chance for a transplant although my father is just so willing to give me his but due to financial constraints and also with some complications of the disease itself, the chance dimmed and that goal of mine never was looked back again.
I thought that I really would still be OK, I will just go ahead with my dialysis sessions, lookout for my diet, being careful not to break a bone and I will be fine. I thought wrong, as years go by, I noticed that my body goes weaker and weaker until I cannot even press a nail cutter firmly enough or open a jar of sugar for my coffee. I can compare my weakness to that when you have a flu.
Weakness is coupled with stiffness of the back and legs. It was funny when I was still able to go to the city with those manifestations that I used to shake my leg before alighting from the bus because my whole body got stiffened by sitting for a couple of hours so I just stopped travelling alone when those symptoms got worst a few times that I cannot even simply walk some distances.
I am also battling this mental torture from my leontiasis disfigurement. If I only have the money then I will really see an orthopedic surgeon for this because it is now starting to block my left eye vision. So the future deal is I might also lose a vision, imagine that. Well my left eye vision is bad anyway, but my hope and wish, and I pray to spare my right eye.
Thankfully I can still eat but when eating I am like a newly hatched bird because I have to eat while lying on my bed. But still when I chew I have to be careful not to spill my food in my mouth because it is not closing completely so I am using a tissue paper once an accidental spill happens when I turn my head to spoon a food up. I also hope and wish and pray to spare me the ability to normally eat. But i know that too soon will be taken off from me.
I also turn down visitations. It just causes me an embarrassment, and they also might judge me or ridicule my appearance after they left my house and talked about me. I just chose to have no more outside social life because I see people looked down at me in a pitiful way and in a different kind of way and it just affects my emotions. But now I enjoy a "safe" social life, where no one can hurt my feelings, a place where I can express my thoughts and feelings, where there is freedom and also I am finding some care and support, love from strangers that I believe are my angels, it is this place at Steemit.
I think you're a warrior! Although I am very sorry for your health I see a lot of strength in you and that I like a lot ... with respect to those people who would judge you then do not really know you. I like to read from you because I feel that every time I know a part of you!
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Thank you @milagros for your support
I am just doing what I can to keep myself aligned but indeed it is a hard life. My wish is ffor my condition not to get overly worse than it is now.
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Just saying hi @cryptopie, nice diary today.
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Being a long-term dialysis patient myself, I can only relate to a fraction of what you endure on a day-to-day basis. I just want to reach out and give you a big hug. I know, a small consolation.
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Hi @lizzyib
Thank you for your thoughts and support. I cannot think what is easy in my life really. From sleeping to going to walk to the bathroom all takes hardship and miserable effort but I am trying to manage and to suck it all up.
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We are here homie :)
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Thank you @
You are always here as a friend to me.
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My pleasure, thats like wise.
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Dear @ cryptopie, so nice to hear from you again. It does hurt to read that you are closing off yourself from the outside world. I do understand how difficult it is but do not close out real friends who try to visit you as well. This social media has great advantages, but real physical contact like a touch or even eye contact is more important as you are a real person and not virtual. However, you have our full support.
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Hi @karinlvira Thank you.
I am not totally closing people out, they can see me but not if I decline first but they can still insist and I allow it. It is just that I am getting an anxiety with people whom I do not really know well and same with them getting us to meet and not really making me feel better in the process, that is what I am preventing.
I am also had a history of prejudice from people because of my social status and physical disability and appearance, it also hurts me when people express their pity on me with their and unsolicited remarks and statements against me that do more harm than good. I am just preventing it all.
I see social media like this as my mental support as well and it is a big deal. I imagine without this thing and me sitting all day at home waiting for time to go by day after day, I might lose my sanity. This social media helps and I think the creator of this platform will go to heaven too.
Thank you again for tthe support.
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