Posted in #CRPS, #CRPSAwarenessMonth, #CRPSORANGEDAY, #Gastroparesis, #RSD, Chronic Illness, Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Gastroparesis, Invisible Illnesses, Life Lessons, My Life, Physically Disabled, Rare Diseases, Strength

CRPS/RSD Awareness

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.

247587748052202

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.

AwarenessThere 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.

 

 

Advertisements
Posted in Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Faith, Gastroparesis, Invisible Illnesses, Life Lessons, My Life, Normalcy, Physically Disabled, Rare Diseases

I’M NOT BROKEN!

Some days, all I want to do is scream out for the whole world to hear, “I’m not broken and I don’t need you to fix me!” I’ve looked my wheelchair over from top to bottom and I’ve checked myself from head to toe for signs indicating or requesting that every person who sees me out of my house stop me and act like it’s their personal mission to heal me. Before I go on, I would like to say, I don’t have a problem with prayer. I’m a Christian and I believe in the power of prayer. However I’m sick of people preying on the disabled.

I was at Kroger the other day, minding my own business, trying to quickly pick up some low-fat, low-fiber, protein packed food. The foods I rely on for protein are not available for purchase anywhere in my small town. I have to travel at least 45 minutes to the nearest Kroger or Wal-Mart, just to buy tofu. I asked about tofu one day at a local grocery store and had to explain what it as because the store employees didn’t even know what it was.

So, I was at Kroger. I’d just passed through the fresh produce section and entered the area where the soy products, such as tofu, were located. An older looking gentleman stopped me and asked a simple question, “What are you doing in that?” He was referring to my wheelchair. I wanted to scream, but I was taught as a child to respect my elders and to be kind to everyone. I thought to myself, “Isn’t is obvious?” Given he was a complete stranger, he received the short sweet version…I have complex regional pain syndrome and it causes pain and weakness in my leg. The man went on to tell me he had a back surgery and it had saved his life. Then he went on to tell me everything I needed to do to get better. The only part of his plan that stuck with me was “massage.” Just the thought of someone touching my leg makes me hurt. I thanked him for his advice, although I don’t really think I was thankful, and went on shopping, thinking I’d probably never see this man again. I was wrong. During that very same shopping trip, every time he passed the aisle I was shopping in he stopped to talk. Although I know it’s a rude behavior, I’ve become pretty good at ignoring people like that. When I pretended to be so interested in rice noodles that I didn’t hear him, he started talking to my mom. He asked her if she was with me. At one point, he passed the end of the aisle I was shopping also in and commented, “She’s not been healed yet.” I suppose he was expecting a Kroger miracle.

On the way home, mom and I discussed what had happened to us at Kroger. I kept asking, why do people ask “What a person is doing in a wheelchair?” To me, it’s obvious that the person has mobility issues and is using the wheelchair to get from point A to point B. For some reason, although wheelchairs, walkers, and canes come in all different sizes, people think they are daily living aids for old people, not the young. I jokingly told mom that I should have told that man I was just sitting in that wheelchair because I thought wheelchairs were sexy and I wanted to see how many creepy old men I could attract. Of course I’ll probably never really say that in public, because I would be too embarrassed, but come on, what did he think I was using a wheelchair for. They aren’t cheap and you don’t just choose to use one because it’s the latest fashion statement. Maybe I was using that wheelchair to try to get a suntan inside the Kroger store or to walk my invisible dog or to imagine I was deep in the ocean in a submarine. I’ve always heard there’s no such thing as a stupid question, but sometimes I feel like giving sarcastically stupid answers.

Like I said, I am a Christian. I do believe God has healing powers, but I don’t believe in picking out only the obviously disabled to pray for or prey on. If you see me in the store and want to pray for me, go for it. No one is going to stop you. You don’t have to know my name or what’s wrong with me in order to pray.  When you pray for that girl in the wheelchair, God is all-knowing and He is going to know who you are praying for. God wants us to pray for the sick and injured, but He also wants us to pray for the healthy. If your going to pray for me, I ask that you also pray for yourself and every other shopper in the store. Everyone needs prayer.

I haven’t yelled at any one yet, but I can’t make any promises not to yell in the future. When you see someone in a wheelchair, please accept that we are just like you. We have feelings just like you. We came to the store to shop, just like you. Just because we are rolling around on wheels instead of walking on two legs doesn’t really make us any different. Many of us have been in a wheelchair for years and we are tired of the million and one people who are always offering advice on what we should be doing different. I realize you may think you are helping by offering the solution that worked for your dear aunt’s coworker’s bother’s friend or by praying for healing, but drawing attention to every disabled person you meet in life is just that, drawing attention to our differences. Our bodies may work or look a little different from the majority of the population, but deep inside we are just the same as everyone else. We are trying to live our lives to the fullest. Our physical appearance and abilities may be different, but we wish to be treated with dignity and respect the same as anyone else. If you aren’t going to stop everyone that looks healthy and able-bodied, why stop me?