Dear Diary: These Things Terrifies Me

in #philippines7 years ago (edited)

I spend a lot of time on my bed as I cannot move around much and it also terrifies me to get up because it will mean that I will have to struggle walking most of the time to the bathroom. Cleaning myself in the bathroom isn't that so easy, for most people it is just a leisurely affair with the soap and the scrub and I myself enjoyed it before these miserable things happened. I even take a bath during cold nights where everyone is fast asleep.

Now, taking a bath is a nightmare for me as it would take three to four rests to finish scrubbing my one arm alone because if I would get up from resting position of stooping, I would lose my breath and get a difficulty in breathing. By stooping I can breathe better. It is just shows that the bones in my back had already compressed my lungs.

It terrifies me to outlive my parents. I don't know what to do if one of my parents are gone for good. I am so dependent on them that I just wanted them to be around for a long time so I can get help and assistance from them that only a parent can provide and that no other can provide. So I am praying to God just to protect them from harm and always heal their bodies.


Myself and my Parents on the waiting Area at the Hospital

It terrifies me the changes in my face. I couldn't care less for my outward appearance because maybe some people might worship me for my lion-inspired looks and give me offerings, that would be much pleasant somewhat, but the changes inside my mouth are beginning to give me hardships in eating, drinking, and talking.

It is a big problem that I am contemplating about and it makes me sad that this is happening in my life, among billions of people on earth, I was one of the unlucky ones to get this rare disorder, so I am just screaming for help and hoping that anyone out there would hear me and offer their help.

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I am so sorry you are suffering I hope you get a miracle.

The miracle is already around me and are just doing its magic for me @tecnosgirl

that is good to hear. Though I am still sorry you are suffering, pain sucks I know that first hand, but I don't have the issues you have explained, I can't even begin to imagine what you are going through.

Well its just unimaginable for most people including me @tecnosgirl
Quite a medical problem that I have to manage on my own so I am just reaching out hoping to get assistance from someone out there.
I still see hope.

What condition is it you suffer from if you don't mind me asking @cryptopie I like to research maybe I will come across something that will help.

If a dialysis patient lasted for about 15 years, they develop a rare bone disorder called Leontiasis, this is true for my case.
I also developed Kyphosis of the spine.
It is caused by overactive parathyroid which is caused by elevation of phosphorus in the body because they don't eliminate phosphorus welll like normal people.

Did you get any medecine for the pain? Does it work?

I just used an NSAID and hope it would not hurt me even more @jamisa

Hum yes I understand... I know there are risks with nsaid...your doctor didn't have anything else to propose for your pain...?

She just prescribed some with acetaminophen in it which I saw just destroyed some patient's liver. I told them that I do not want that medicine and I that want an alternative.

Well if you want my nurse's opinion, acetaminophen won't destroy your liver if, when in good health, you take max 4 grams a day and with a kidney condition it's 2 grams per 24 hours...I've had a patient with kidney disease who took 2 grams a day and it helped her a lot...

Thank you @jamisa
My doctor's prescription has 750mg Acetaminophen in it and wants me to take it 3 times a day.
I just witnessed its cumulative effects on my co-patients, they all vomited blood, a sign of liver failure.

:((

Is there a reason you're not prescribed opioids, @cryptopie? I would think they would be much more effective pain relievers compared to OTC options.

Opiods will make me constipate. I do not like that as I had experienced a bad constipation and you can just imagine what I just had done for that.
Also, opiods lose their effectiveness in long term use plus its addictive, but maybe a taking it in turns with other types of painkillers will be a good option.
I might tell that to my doctor @runaway-psyche
Thank you.

This is so sad. I don't know what to say as it so hard to imagine what you're dealing with. Try to stay strong, your attitude is so important. Don't let yourself feel beaten or your body will suffer even more!

Pain and breathlessness are my enemies that fight everyday of my life @marie-jay
I can do it with the help of anyone around.

Being strong shows spirit and determination. I hope by a miracle you will be okay in time, but continue to be strong and enjoy the love and care your parents are giving you.

Thank you for the encouragement @thegoliath
I hope miracles do happen everyday for my life and everybody's life too.

Sore today, strong tomorrow @cryptopie! I am holding you in my thoughts, upvoted & keeping you in my prayers. 🌼

Thank you again @szuri
Bless you.

How would we get around without the help of our parents

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