Hello dear friends... I try to complain very little and keep the truly hard stuff to myself and my family. While many people post rants and groan about the monotony of every day life on social media, I choose not to (for the most part). I choose to focus on the positive and make that the display that people see about me at a glance. There's enough negative charges out there, we need some positive ones to try to balance the equation, am I right? So those of you who are my friends on social media and also the people I see in person would (hopefully) say that I try to have a positive attitude and rarely complain about the hard things in my life, I can put on a strong happy, face easily (almost too easily sometimes) and because of this many of you are under the false impression that things aren't so tough and so when I ask for prayer pain or other things, people wrongly think that this is something new, out of the ordinary. But just because I don't complain, doesn't mean that I don't hurt. The amount of physical discomfort I am in every day is astronomical. The pain in my bones is excruciating, rightly so due to the significant amount of cancer in my bones, it feels like there is someone inside my bones pushing to get out at any cost. I am on pain medication and that helps some, but I still have significant pain everyday. The cancer is all throughout my bones and it makes things like walking and sitting very painful. I stay in my bed most of the time simply because that is the most comfortable place for me to be. I am nauseous a good part of the time also like hurry-I-need-a-bucket sick. It makes it hard to eat because I know what will follow, but I do anyways and I also have medication for this but again it doesn't take it all away. Due to the neurological nature of my cancer GanglioNEUROblastoma, I also experience jerking and weird sensory hallucinations (ie. bugs crawling on my skin, feeling like there's something wet on me, etc.) and again while I take medicine for these things it doesn't take it all away. I also have lost a lot of my freedom to do things for myself that you take for granted. Do you need someone to help you bathe? To get dressed? To help you walk? To help you do your hair? To help you sit up? While I do need help with all of these things and more I have the most wonderful, the most committed, the most loving caretaker one could ask for, she's my closest friend and I am privileged to call her my mom. She takes care of me 24/7 and she NEVER complains or makes me feel like a burden and she does it with such joy. I am so thankful for her because I know without her I would have to be in a care facility. She is my main caretaker. but my dad and brothers certainly do many things to help me as well. I am blessed. Having this disease has affected me not only physically but also emotionally. Soon after I relapsed, there were many people who offered to help and who visited and who contacted me and my family on a regular basis. But after a few months, those people have slowly dropped out of my life, one by one and returned to their lives and have forgotten about me and my family's struggle which is just as hard now, if not harder, than when we first began this journey. Do I expect people to completely drop their lives and sit by my side and hold my hand 24/7? No I don't. But I would appreciate a text or a short visit or help for my family to take care of me. There have been a select few of you who have kept reaching out and helping me and my family. The majority though, have walked away from me. They don't say a reason but they leave and no longer contact me. People have failed to treat me the same and I understand that it might be hard to be around me and see me sick, I don't know if it forces them to contemplate their own mortality or if they think that cancer is contagious (FYI it's not. I promise.) or if it's just not fun to be around me anymore or what. None of these people have given me a reason, they just left. I have lost at least 75% of my friends. What I would like to say to those people is this: Imagine you were me for a minute. Imagine being in bed all day because you're too tired to do anything else, imagine going from getting numerous texts from friends a day to usually not even getting a single text. Imagine only getting to see a friend every couple of months when those same people would hang out with you frequently. Imagine that the only place you go is the hospital once a week and the nurses are closer to you than your friends you used to take for granted. And the few friends that talk to you on occasion never want to share their life or ask you about yours. I want to hear about your life because frankly, mine is kind of boring, unless you want to hear about the new flooring at the hospital. I am the same Kayli on the inside as I always was. So what changed? And finally to those select few of you that are faithful in coming to visit or contact me, you have no idea how much it means to me. And to my mom, dad, Caleb and Luke; thank you for going through this journey with me because I know it's just as hard on you guys as it is on me. So there's my complaining. I hope maybe it encourages you to reach out to someone who's a shut-in or who isn't able to do much. Even if it's hard, Jesus is always there to give you the strength you need.
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AuthorCancer Fighter. Jesus Lover. Family&Friends. Blessed. Archives
December 2022
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