Hello! Here’s a little tid bit of why I decided to start this blog.
About a year and a half ago (early 2017) I started a long, hard, frustrating and draining quest to figure out what was going on with my body. Most of what I was dealing with, for most of my life, I thought was normal. Until I started a job at a salon, where I came to realize what was normal for me was not “normal”. I’m not one to just tell all my business, but ask me questions and I’ll give you all my answers. I was at the salon for about a year when I became very comfortable with some of the clients. One in particular was a nurse, she was one of my favorite clients. Anyways, every so often I would make small comments of pain I was in, not sleeping well, not having energy, just not feeling well in general. This client, being a nurse, wanted to know more of what I was talking about, so I would give her all the details. She eventually convinced me to see a doctor. And so my journey of figuring out what was wrong with me, being diagnosed first with, amoung a few other things, Fibromyalgia, adding to that, Ehlers-Danlos Syndrome, and Dysautonomia began!
I am writing this blog to have an outlet, a place for me to get off my chest what I can’t really talk about to the people around me. Most of what I deal with can be considered an invisible illness. Meaning majority of my symptoms are not visible to the outside world. I look completely healthy, and have learn to act like I am pretty well. Most people in my life, friends, co-workers, even family members have no idea anything is wrong with me. Granted, there are people out there who have conditions way worse than mine, but everyone has struggles, right? I wake up everyday in pain. I live with chronic pain all over my body. Most people, even doctors, don’t initially believe “all over my body”. I suffer from A LOT of headaches. I have been getting treatment for the headaches and migraines for about 5 years now. Back then, I had had a headache for four months straight. Not one day without a headache. Then one day while showering a migraine came on, that led to be going to the hospital. When this happened and I told my mom everything I was dealing with she convinced me this wasn’t normal and I needed to go to the doctor. This started my migraine treatments. Luckily, for the most part my migraines are under control. THANK GOODNESS! Fast forward a few years, working at that salon, was when all the other things came into play. In one year I spent so much money and time going to doctor appointments, trying medications, going to physical therapy trying to find out what was causing my problems. I have joint pain in or near most joints. My lower back kills me to bend forward and throbs and swells when I straighten up. I am a cold person, I’m cold when most people are hot. Bring on the hot flashes!! I was only 27 when that started, no it wasn’t menopause hahah. These hot flashes were internal. I didn’t sweat(my body is very delayed when it comes to sweating), my skin gets very blotchy and I get extremely nauseous and this will last for hours after the hot flash happens. My joints are super lax, some seem to be stuck in subluxation state- very uncomfortable. Because of this subluxation, the muscles supporting those joints are working on over drive, trying to basically keep me from falling apart. Imagine using a muscle for anything and not being able to stop no matter what. Sounds painful? It is, my muscles never get a break and they are very tired. Recently my knees having been hurting so bad, almost bringing me to tears when straightening them. Okay, I think that’s the gist of my symptoms.
First, I started with an Internist, who had me go to physical therapy, then put me on medications because the physical therapy wasn’t working. The medications also didn’t work, one of them made me hallucinate. Next I spoke with my neurologist regarding the pain and he diagnosed me with the fibromyalgia. So, by this point I was being treated for chronic migraines and fibromyalgia. A few months later, my pain getting worse and it breaking me down, I was getting to a bad place. I was so upset. Always being in pain with nothing to do. I would leave work and just cry in the car in pain. I wasn’t sleeping at all, just making the pain worse. It was a vicious cycle. I was very depressed and just mentally exhausted. This is when I decided to see a psychiatrist…. I suffer from depression, generalized anxiety, panic disorder, social phobia, and slight OCD tendencys. Next up, the chiropractor! I thought maybe I just need an adjustment and Ill be good as new. Nope! After evaluating me, he suspected I may have EDS (Ehlers-Danlos Syndrome). On to the geneticist!! And here is where I am now, all those things I said before plus EDS, dysautonomia, POTS! Yay! I have an answer. BOO! It’s an answer that has no cure, and no easy treatment, just managing each symptom as it comes. But it is still an answer, and in the end that is all I asked for. I needed a reason for all of this, so I wouldn’t think I was going crazy.
Okay, so I wrote all of that to get things off my chest. A lot of people do know about this stuff, but no one really knows how bad. People ask how I feel and it’s okay, good, fine, really? No, not really, but who wants to hear the same thing over and over again with no improvement, just negativity. People don’t want to hear that, so they get okay, good, fine.
For anyone who may be suffering something similar in any way, maybe this can help! And for people who don’t but might need to know that everyone is dealing with something, regardless of how they look on the outside, or how they act. I’ve recently decided I need to travel. It is something I have always wanted to do, and the other day something just clicked- WHY NOT NOW??? So hopefully Ill have some travels to post in here! If anyone finds this and reads it..
Hi, I'm Kellie, but I like my middle name too Andre', so call me Kell Andre'. My alter-ego is Blossom, hopefully I'll be traveling a lot in the near future, and leaving the pain behind me!