I'm a case of epiphany of disability wallowing in a low quality of life but still along chugging because God is always been helping

in hive-185836 •  8 months ago 

I can't even push my wheelchair alone, always being inside my own discomfort zone buut with my harships I am not always alone.

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I came to a very bad start as a dialysis patient because of my experience of being a recipient of our country here having a low quality of dialysis treatment in particular compared to the west. This fact is what I learned later because of my exposure to the Internet where with some light research, I did found out that no matter what I do I will never feel much better as a dialysis patient here in my country because we do have a low standard over here rooting from the fact that dialysis treatment is really so expensive that even the rich will soon find themselves queueing with those that are making request to government officials and charity services hoping to receive some funds which are now really hard to come-by because of the economy as some says although there will still be a ready fund for helping their constituents because politicians benefits from drug and gambling lords aside from having a budget allocated for their own social service. There is also a grafting method being done by the official themselves or their secretaries handing you a blank paper but you have to sign it first before it will get processed but it is just their way to manipulate numbers on papers so that they can pocket the rest of the money which should go to you as a recipient for what you are requesting which usually is in the form of money. That is what I experienced from a secretary of the board members (councilors) of our province when our youth group went to one of those councilors offices to request for money to fund our objective of buying a basketball, a sport rather that I wasn't able to learn because of my already affected physicality because of my already brewing Kidney condition.

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With healthcare, sometimes it depends on who will manage your needs and not really the standardized care that the system is enforcing them to do. Regardless, the one with lots of money gets the best things as always.

Going back to my topic, as a new dialysis patient way back more then 22 years ago (at December this year it is my 23rd anniversary for being a dialysis patient) I was getting treatment sessions once every week. Well apparently it was a very bad idea suggested and ordered by my nephrologist from the first dialysis clinic being operated inside the hospital by some company that just rents one room of the hospital where there are two rusty and defective blue B-Braun dialysis machines that can accommodate maybe about six patients maximum per day. The patient can choose or be scheduled to use either the bed or that old "Lazy boy" chair which do not have a leg and foot rest but only a chair is placed whenever a patient would either sit or lay down unto it. While I can forgive the physical settings of that dialysis clinic, the thing that was bad really was the defective nature of the machines as it would sometimes not work and ruin my sessions or other patients sessions. There is also a time that the attending nurse forgot to draw water from me and it made me so upset because most of the time there is only one nurse operating those two dialysis machines. Anyway going back to my first two weeks where I was only receiving one dialysis treatment per week, it of course affected me because the accumulation of toxins and the elevation of my blood pressure for the reason that there is a long gap between dialysis sessions. As a result, and thankfully that it coincided to my dialysis treatment day, I suffered both seizures and loss of consciousness and at the same time losing my mind because of my high creatinine levels. I was rushed to the emergency room and later injected with lots of tranquilizers which gave me peace for a while until I am at it again, just squirming and yelling as if my own body is just wanting something bad to get out from it. I do not have any idea what was happening all along because I am like a possessed human being while at the same time having seizures. however later I was dialyzed a few times and later sent home. I spent seven days at the hospital and after waking up in my room, I of course experienced hallucinations because of those tranquilizers the medical personnel had given me while I am in a delirious state of physical struggles because of seizures and getting the "crazies". I just thank God that I survived it particularly having the seizures because those state of brain haywire can damage the brain.

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Medicine is not an exact science and generally we are at the mercy of those medical professionals if they can change our lives to the better or leave us disabled for life in the process.

I can't blame anyone for that particular cause of one of my struggles as a dialysis patient because I know that my former Nephrologist knows that we do not have a better means of paying for my dialysis sessions which is really only coming from "out from pocket" where we are not using any health insurance but only getting loans from sadly, loan sharks until my brother was able to get some loan from his friends from the company they w\are working from and the load went to be free of interests and just a way from his friends to help him out, may God bless them all. Later I was able to relocate to a dialysis center here in my town and I was lucky all the time that there was never an issue about how much water or fluids I wanted to get drawn out from my body as all of my nurses can just do on how much water I want to get removed so that I can feel much better plus with lots of allowance for consuming fluids in-between dialysis sessions. But during those couple of years as a new dialysis patient, I can only go for once every five days so in effect when I finally get to be treated again, I was always heavy with extra fluids. It is just recently that a new improved dialysis package benefit coming from my government insurance gave me the chance to have more frequent dialysis treatments especially after my dialysis center had given us a promo whereas if if opt-in for a three times dialysis treatment, the third session will be free from extra bill charges. It means that there will be no more copay coming from us which is a good deal regardless that the two other copay really is too much to pay already because the triage part of getting my dialysis had changed only to those that only has symptoms presenting the likelihood of having a CoViD like those that coughs incessantly or those patients that have fevers.

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Dialysis patients in particular would not survive without money because of the developing complications that they have to face right from the start. They can never evade expenses and a patient can be lucky if there are people who supports them but i rather support myself rather depend on other people who will eventually curse at a sight of you because your need to patch financial needs are never ending regardless that you have a working health insurance.

Dialysis treatments to be honest is different from center to center, basically if you have "the money", you can choose a modern private hospital and they can give you a better quality dialysis treatment, so it really comes with a price while at the same time generally having a low standard compared to what you can experience in the west where they make sure that your labs are ok, everything is ok and not like you are just wanting to prolong your life without much quality of life. Like for example with my current dialysis clinic, my sessions are tailored to be set on the "safe side" which only means that they are just focused on my blood pressure, fiddled things to the settings to the dialysis machine so that I can only get a rather "mild dialysis" so that my blood pressure would not fall and because of that I am feeling that not much cleaning happened with the evidence that my creatinine levels are still high plus every after session I am not that hungry either, meaning that not much blood sugar was washed-away by the dialysis process because it was just set to be like that but it only means that I have a lesser quality of life because of my lack of appetite. The only favorable thing for me is that at least I can reach my dry weight and it improved my breathing but not like before where I can eat much better but now it is no longer the case for the reason that I am stuck now with the way that they are dialyzing my body and Ii just hope that it will change.

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I have to put myself in choosing the half-full glass to survive because choosing the full glass is no longer an option and so sacrificing my better quality of life which I lost many years ago.

Then I never knew that while these things had happened and are still happening until now, my bones are changing already. The onset of a rare bone disorder appeared but rather slowly until it picked-up pace around 2017. Despite the marked changes in my physical appearance I continued to ignore it, sinking my head in the sand hoping that it will either stop at some point. But id didn't get any improvement but rather went to change my quality if life because of the pain factor and what it dis too my appearance. Thankfully by the grace and mercy of God I discovered a way to at least taper the effects of secondary hyperparathyroidism in my bones and that really at least gave me some relief from unimaginable discomfort that I cannot even wish it to the worst of my enemies and yet I was able to reverse the process and now I am not in agony anymore but permanently disabled my mobility. What is important for me now is to try to give more improvement to my medical issues because I know that God himself is working on me because otherwise I wouldn't told these things permanently imbedded in a block of Blurt blockchain.

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Now I just have to be contented with what little had left and be happy with it and never minding anymore the irreversible losses in my life because it is all gone and will never comeback, I am just lucky that at least I witnesses and experienced on how life is no matter how short I had experienced it before anything bad had happened which I am experiencing currently. None of these things will ever come into my mind once i get the "real life", a place where God resides.


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Peace & Love!

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