November 6 was Color the World Orange Day for CRPS/RSD Awareness all over the world and the month of November is CRPS/RSD Awareness Month. I saw my doctor that helps me manage my CRPS/RSD on November 6 and we talked about it being awareness day around the world. We also talked about me not being physically able to work right now because of CRPS/RSD and gastroparesis. He encouraged me while I’m not able to work to start a blog or something like that to share my story, inspire others, and connect me to the outside world. I told him I have a blog, but I hadn’t, posted anything on it in a while. (According to WordPress, it’s been two months since I’ve posted anything.) I explained to my doctor that I just hadn’t felt up to blogging. Over the past two months, I’ve been on antibiotics every other week. For some reason my immune system is down and my body isn’t fighting off anything. Since July, I’ve been treated for diverticulitis, a kidney stone, multiple urinary tract infections, shingles, mouth sores (yeast infection from antibiotics), and an ear infection that doesn’t want to go away. That is in addition to my gastroparesis, CRPS/RSD, migraines, and polycystic ovaries, all which I have lived with for years. My doctor told me he thought I needed to blog. He asked me why wait. He said people don’t want to hear the story once you are all better. He told me I had so much to share and I needed to be sharing my story as I live it. He said that I could help others facing the same battles by sharing my story and showing them they aren’t alone. So, I am going to try to do a better job and update my blog a little more often, because he is right…I do need to share. Although I’m not sure how sharing my daily struggles is going to help anyone else, reading stories written by other warriors fighting chronic health conditions does help me.
So, what have I been doing for the past few months? Good question. Like I said, I’ve been sick from some kind of infection pretty much nonstop. I was advised to stay home because my immune system isn’t fighting. For the most part, that is what I’ve done. I’ve spent many days in bed feeling horrible. However, I had my tablet in bed with me and it was my door to the outside world. I watched as friends and family roamed the world. I saw adventures taking place as friends took their families on vacations and cruises and family traveled coast to coast. I continued to watch as officials around the world declared proclamations and agreed to light up bridges and buildings orange for CRPS/RSD Awareness. Most of the places I’ve seen pictures of are places I’ve never been because my health conditions limit my ability to travel.
I decided to try to help raise awareness, so I contacted my local officials and asked them to make proclamations (which they did), I started sharing awareness information, I colored my hair orange, I set up a booth at a local elementary school, and I got sick again. If you see me out and I don’t shake your hand or give you a hug, or if I do and immediately reach for the hand sanitizer, I’m not being rude. I’m just trying my best to stay as healthy as possible. If you don’t see me out at all, I’m either in the middle of a bad CRPS/RSD or gastroparesis flare and not physically capable of being out, sick with something else on top of my chronic health conditions, or trying to build my strength back up because of one of these two things. Life can be a struggle, but I refuse to give up. While I may not be feeling good today, I know better days lie ahead. Better days may be few and far apart right now, but the better days are what keep me going.
So for those of you following my blog who are battling your own health conditions, my advice is to take life one step at a time. Don’t look ahead at days, months, and years. Take time and enjoy the little moments in life. There’s nothing wrong with planning ahead, but don’t get down on yourself if you can’t follow through with your plans. I know that’s easier said than done, but we need to stop blaming ourselves for things beyond our control. Life has a way of pulling us down at times. Often we have to do a cost benefit analysis. Yes, going out and spreading awareness may have taken a big toll on my health and energy, but those children are our future doctors, nurses, and scientists. Sometimes the benefits outweigh the costs. Who knows, one of those students may find the cure. Until then, we’ll keep battling. We are warriors and together we are strong.
There may be specific dates set aside to raise awareness of our invisible and rare health conditions, but we are very aware of them every day. I encourage each of you to continue to share your story with others. If you aren’t sharing your story, I encourage you to start sharing it. I must admit, this blog has probably done me more good than it has anyone else. We must continue to share because as my doctor said, there’s someone else out there that needs to know they aren’t fighting alone.