Chronic
Y’all, I have a chronic illness. I didn’t choose it, wish for it, or want it. I’d prefer to not spend tens of thousands of extra dollars. I’d happily give it away to whomever wants it, they’re more than welcome to it. I had a lunch today with a friend and I swear she is literally like the twin version of me (so funny how that works). I sat there and we chatted, talked, cried, laughed. Most of all, we were just there to support one another. As we talked and I was thinking about things – life in general amongst them, there is one thing that kept coming up to me. Something that I keep running in my head over and over. It is the one thing that troubles me and it is when someone doubts themselves or their innate goodness because of other people. It breaks my heart when I see countless stories of people searching for help (medically or otherwise) with no avail. So when I have people who get mad that I discuss my illness and the shit I went through, I really want to punch them to be honest (read on for why & I wouldn’t really). Almost ALL of the people I speak to, who reach out to me, have many members of their family that don’t understand and most importantly DON’T support them. Compounding that is the fact that they are having trouble finding answers from our medical system and the costs those answers require. These people who desperately need help can’t find it!!! Think about that – people in need of help desperately but they are turn away or shuffled to doctor after doctor. To make matters worse medical professionals, family, and friends all tell them they’re crazy or making it up (it’s a vicious cycle & it’s painful to watch).
These people aren’t crazy, they in need of help, and yet they get doors slammed in their faces and people telling them that it isn’t real that they’re not sick. I can promise you that every one of these people would gladly trade with you. Hands down. These people are selfless y’all. You know those medicines that help?? You know those advances in medicine?? That newly discovered pathogen, the new treatment for food allergies, for a certain cancer?? Those things that help advance medicine?? There are people out there FIGHTING for those things FOR EVERYONE. Let that soak in. These people are sick, spending tens and hundreds of thousands of dollars for therapy, and yet almost ALL of them will still come out to FIGHT for those who are too sick to help or who DO NOT yet have this illness and hopefully never will. These people are literally dying on treatments I wouldn’t wish on my worst enemy and they’re there fighting for the good of others. What then does that say about the group that shun them?? Ignore them?? Vilify them?? All because they have the common human decency to WANT to better this world for those coming after, to make a change in an unequal, unfair world where they fell in the cracks. Dislike my illness, I HATE it with a passion. Dislike how I talk about it in a public forum, but keep it to yourself because once again you never know the good it is doing. (**Just to clarify these words were written very matter of factly there is no hidden tone other than a slight sarcasm occasionally. I’m quite serious and logically no one knows 100% why the human body works how it does thus it seems reasonable that no one person can know everything medically**).
Let’s think about this. My entire life I have had certain things that I wanted for myself and my #1 was children. I wanted desperately to have many munchkins. I wanted to be the mom with the cute holiday décor, the sweet lunches, the mom who visited and volunteered, the one who did crafts and played with her babes, I wanted to make the best meals, create the best life, so why on earth would I give up almost every single one of these things FOR YEARS that I will never get back. My illnesses are expensive – I’d rather a beach house. My meds for January and February of this year so far are about $5000 (not counting prescriptions, lab work, copays, organic food, special vitamins, supplements, covered by insurance – and NO I didn’t add co pays). So in reality if my illness went away right now, I could have a beach condo at the very least (follow my logic here). If having one of my biggest wishes come true was within my control would I pick the hard road (illness) or the easy (beach condo). Let’s be 100% real here, I highly doubt that anyone would pick option 1. Those people who would choose to pick option 1 may need to see that doctor anyway, as for me I’d gladly go for #2.
The medical establishment in this country and in many others is broken. It’s broken for many, many reasons that don’t fit the needs of this blog post. I DARE any doctor out there to sit down and explain every minute detail of the human body to me (and I mean every single bit – not just what we as humans know…. I want it all tell me every single thing every single part of my body does – in detail. All the functions known and all those special bits around the brain that we don’t have any real info on yet. I’d like any doctor/scientist to tell me with 100% certainty that every pathogen that can cause human illness has been found. I’d like for one to tell me with 100% certainty with PROOF why my condition cannot be chronic when it is already stated that it can become a long term issue by the creation of Post Treatment Lyme Disease Syndrome which is listed on the CDC website. The CDC says Lyme is a symptomatic diagnosis because the testing for it is so bad (I’ve got medical publications for ya if you don’t believe me – straight outta Johns Hopkins). Beyond that the other -ish that comes with lyme is hardly ever recognized because there are new things that are compounding and creating massive issues. Add to that mold issues and genetic variations and we have a recipe for disaster. I am generally logical in my thinking processes and to me it logically would be impossible for any scientist, doctor, or other to ever claim that they definitively know 100% about the human body. This means that there always will be new things coming along, unfortunately the people who go first don’t always get the best treatment. People legitimately push you away or shut you down because they do not believe you. They legitimately think you’re nuts. That’s fine, think I’m nuts all you want. However, I’ll be laughing my ass off when my 12 years of arthritis doesn’t cause me a bit of pain (99% of the time) and I’m not on meds for it. Going from literally pain all the time to none is a HUGE change. What changed??!! TREATMENT by a truly gifted physician who also happens to be an amazing diagnostician. I was led to that treatment because someone spoke about their illness and it resonated with me (similar symptoms). While not every person who happens upon a post or blog may not be in need of help, some are. More and more are as our healthcare industry is broken and our food is less and less fresh and safe. So hate me all you will, my heart is big, I love BIG, but I will HELP whomever I can and whomever needs help.
**This post is to challenge the perception that many people have about those who are chronically ill. That is its SOLE purpose!**