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

The Struggle

After being diagnosed with a rare chronic pain disorder known as Complex Regional Pain Syndrome over 22 years ago, I struggled for years to find balance and accept my new normal. I liked the old me. The fun-loving me that enjoyed camping, hiking, and playing volleyball. You see, when health challenges turn your life upside down and you can no longer do the things you once enjoyed, you lose a piece of yourself. We, as people, tend to identify ourselves based on what we do. When introducing ourselves we describe ourselves based on things such as where we live (I’m an American. I’m a Kentuckian.), our job (I’m a teacher. I’m a doctor. I’m a police officer.), organizations or groups we associate ourselves with (I’m a Christian. I’m a veteran. I’m a member of a club.), and things we do for fun (I’m a skier. I’m a golfer. I’m a runner. ). When health issues take these things out of our lives, it’s Like our identity has been stolen and we no longer know who we are. We grieve the person we once were and feel lost in our own bodies.

After struggling for several years with chronic pain and who I was, I realized my past life of hiking and playing volleyball was probably over. I began doing craft type activities and found a new love for painting and knitting. I was beginning to accept my new normal, when gastroparesis entered the picture. I could still paint and knit, but now I couldn’t eat. My favorite foods…fried chicken, biscuits and gravy, spaghetti… they all made me vomit. My weight began to drop quickly, I became weak, and my legs cramped. I watched as my fingers and toes began to look a grayish color and my skin became formable like playdough. Again, I began to struggle. I didn’t know the pale sickly woman in the mirror looking back at me.

New doctors were added. A picc line was put in so I could be hydrated with IV fluids at home. A gastric stimulator was implanted to help my stomach work more normal. I saw a dietician. Gastroparesis, like CRPS/RSD, does not have a cure. The doctors treat the symptoms in an effort to improve quality of life. This time I adapted to my new normal a little more quickly. I’ve accepted that fried chicken, biscuit and gravy, other fatty fried foods, fresh vegetables and fruits, foods high in fiber, and spicy foods are probably never going to be a part of my diet again unless I want to be sick after eating. I’m learning to make my own veggie burgers and meat substitutes using various overcooked vegetables, protein powder, and gastroparesis friendly herbs. It’s not what I grew up eating, but I’m learning to like my new, healthier food choices.

Over the years, I’ve come to realize that life is a series of events and if we want to make the most out of life we must be flexible and willing to try new things. We have to learn to let go of the past and embrace the future. Just this week I found out my recurring urinary tract infections are probably being caused by a bladder that doesn’t empty properly. I don’t know what will become of that. I’ve just started seeing a doctor for it and more testing is scheduled. I’m also having recurring ear infections that don’t want to go away and am scheduled to see an ear, nose, and throat specialist. I’ve accepted that whatever becomes of it all, I’ll deal with it as it comes along. Yes, I know there will be more struggles as I try to adapt to my new normal once again, but this time I feel more prepared. I’m not worried about what might happen. I’m just going to enjoy the moment and live life as it comes.

Yes, when you live with chronic health issues, life is a struggle. However, your attitude and how you approach those struggles plays a huge role in the enjoyment you get out of life. You can choose to live in denial and try to run and hide from your problems or you can face them head on as they come and problem solve to find ways to live life to the fullest with those health conditions. Me, I’m choosing to accept my new normal and live the best life I can no matter what I have to face. I know there will be more struggles ahead and I’m sure there will be times of grief as I lose my identity and have to find myself again. I’ve learned that no matter how weak my body may seem at times, that weakness has made me stronger as a person.

For those struggling with new health conditions and the grief associated with not being the person you once were, I encourage you to continue to move forward. No, you may never be the person you were before, but there’s nothing wrong with the new you. You may have to do like me and find new interests and hobbies, but the important thing is that you keep moving forward and striving to live the best life you possibly can. You may feel like your life is over, but it isn’t. You’ve just come upon a road block. With time, you’ll find your new path and continue through life in a different direction. As hard as it is to wade through the process of grieving our old self, the thing that has helped me most was meeting others who are traveling down the same road. Their courage and strength helps me to continue to look up and move forward. I hope I can inspire someone else to do the same.

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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.

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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.

 

 

Posted in Chronic Illness, Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Gastroparesis, Invisible Illnesses, My Life, Rare Diseases

Absent

The struggles of living life with complex regional pain syndrome and gastroparesis are always present on the good days and the not so good days. I’ve not written on my blog the past few weeks because sometimes the struggles try to take us under.

The past two months have been difficult for me. I can honestly say that there have been several times over the past two months that I thought I might be facing the end of life. On top of my CRPS and gastroparesis, during the past two months I’ve had a kidney stone, a urinary tract infection, fluid in my ears, diverticulitis, several migraines, and shingles. I realize my daily fight against CRPS and gastroparesis causes dehydration, sudden drops in blood sugar and blood pressure, and probably weakens my immune system. That’s the only link I can find between my recent health issues and my long-term chronic conditions.

I volunteered at a five-day camp in July and have basically been absent from life since. I’ve been out for doctor appointments and tests and to go to the store for food and supplies. On several occasions, I’ve just asked my family to pick up what I need.

I’ve spent most of my time the last few weeks in bed. Not feeling well takes its toll on the body. Not feeling well for weeks at a time really takes its toll. Have I slept all that time? No. I’ve done a lot of laying with my eyes closed and thinking.

Life isn’t easy with sickness. I’ve spent a lot of time thinking about how hard I have tried over the years to hide my illness. I thought I needed to be like others to fit in. Honestly, trying to hide my chronic conditions has done nothing except leave me exhausted and miserable. I’ve realized over the past few weeks that there is nothing wrong with being sick and there is nothing wrong with allowing others to know your sick. I’ve realized that I didn’t choose my chronic conditions and there’s no reason I should try to pretend they don’t exist. I’ve learned I need to embrace my life the way it is and enjoy what I can of it. I’ve also learned to let go because I can’t do it on my own. If someone wants to help, I need to let them. It’s not that I want help, it’s that I need it.

So, while I may have been absent from my blog and public view, I’ve been very much present in my life. I’m slowly learning to embrace my life as it is. I’m realizing that I need to be the person I am and quit trying to be what I think others want me to be.

Posted in #GPPieFaceChallenge, Courage, Gastroparesis, Invisible Illnesses, My Life

#GPPieFaceChallenge

Pie Face

 

Sorry blog followers, but my account will not let me post a video, so here is my gastroparesis pie face challenge photo.

I challenge each of you to take the gastroparesis pie face challenge and post an image or video on the social media site of your choice.

For more information about the gastroparesis pie face challenge visit their official page on Facebook. https://www.facebook.com/gastroparesispiefacechallenge/

Posted in Chronic Illness, Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Gastroparesis, My Life, Rare Diseases

3 am

It’s not my usual posting time and honestly I’m not sure why I’m blogging right now. There’s not a lot of other choices of things to do at 3am, so why not blog?

Some may be wondering, why 3 am? Well, because I’m awake, dealing with nausea, vomiting, and pain. Let’s be real… sleepless nights are not a rare thing for those of us with CRPS and/or gastroparesis. Today has been a rough day. For the past couple of weeks I’ve been more sick. I don’t know why, I just have. It seems as if everything I eat is just sitting in my stomach. As gross as it may sound, I see what I eat twenty-four hours earlier, being vomited up undigested. I’m not sure if it’s just my stomach being extra sluggish or what. I’m also having muscle spasms in the area around the gastric stimulator battery in my abdomen. I tried calling my GI motility doctor today. I left a message. Maybe they will call me back on Monday.

I’m also having  some new joint related pain. It was my knee and ankle last Saturday. Today it’s my shoulder and wrist. I’m not sure what is going on with my joints. They feel like they are popping out of place. My primary care sent me for labs today to check for arthritis. It may just be my CRPS/RSD causing problems. I guess we’ll find out Monday when the lab results come back.

I realize this isn’t my normal blog post, but sometimes I guess it’s good to share the tough times. I’ve learned to put up a front and hide my trials from the world. As I told a friend from church this week, “Sometimes we feel like crawling into bed and just crying, but instead we put on our church face and tell everyone we are okay.” Well, the truth always finds you out and we all have good days and more challenging days. If we don’t share our challenges, people get the idea that we never have bad days. For me, rough days often out number the good, but no one sees me on those days. When I don’t feel good, I stay home.

I need this ever single day

There’s one thing that I can assure you of though, CRPS/RSD and gastroparesis can’t keep a good girl down. I refuse to give up and let chronic illnesses out do me. I know God is in control and He and I are going to get through this. We are a team and with Him, nothing is impossible. I may not be able to do many of the things I want to do because of pain and sickness, but that doesn’t mean I have to give up. I have hopes and dreams just like every one else. CRPS/RSD and gastroparesis may have changed my path in life, but they can’t steal my happiness.

For with God nothing shall be impossible. Luke 1:37.

 

Posted in Chronic Illness, Gastroparesis, Invisible Illnesses, My Life

Gastroparesis Awareness

I’ve been told that I’ve had stomach issues since I was a baby. I don’t remember being a baby, so I’ll take  mom’s word on that. What I do know is that from my childhood years on, I’ve had a vomiting issue that I had no control over. All my life, I assumed I was either allergic to or had an intolerance of many foods. However, about two years ago I found out I have gastroparesis. Now I know why I vomit so much… my stomach doesn’t empty. August is gastroparesis awareness month, so throughout the month I’ll be posting about my experiences with gastroparesis. I’ve met several people with gastroparesis, so I’m not sure how rare it is, but here’s some info.

Gastroparesis Definition

 

Posted in Center for Courageous Kids, My Life, Thankfulness, Volunteering with Pain

CCK How do you feel?

I just returned home last night from a week-long trip to a camp for children with chronic illnesses. The Center for Courageous Kids  is a medical camp in Scottsville, KY for children who cannot attend regular summer camps because of their health issues.

I must admit, five days at camp left me exhausted and in horrible pain, but it was worth it. I met a lot of amazing families. From the children living in pain…to the parents who brought them to camp…to the siblings who support them everyday in their fight against pain…to the amazing volunteers and CCK staff who make camp possible…I felt honored to spend the week with all of them.

I am so thankful CCK allowed me to volunteer as a counselor. I couldn’t be a camp counselor at any other camp because of my CRPS and gastroparesis. However, CCK has their camp and program areas designed to be totally wheelchair accessible and the camp has daily “siesta” time to go back to your room to get some rest. Without that mid-day rest time, I wouldn’t have survived the day.

Meals at the camp are served buffet style three times a day in the dining hall for campers, their families (during family retreats), and camp counselors and staff. The camp chef works with campers and their families to meet specific dietary needs when it comes to sensitive stomachs and food allergies. Each dish has a sign attached to it which lists ingredients that campers and their families may be allergic to. Snacks, such as toast, sun butter, fruit, juice, Gatorade, milk, and water are available around the clock for those who need a little snack to keep them going.

It was an amazing week at camp. Each day the children rotated between program areas horseback riding, playing music, crafting, cooking, beautifying, wood working, bowling, playing arcade games, swimming, playing in the gym, shooting bow and arrow, fishing, and boating. They also had the opportunity to participate in all camp activities such as messy games, movie night, and a stage day talent show.

I haven’t been in a canoe or boat since being diagnosed with CRPS when I was fifteen years old…22years ago. I was a bit nervous about climbing on the boat and going out on the water, but everything turned out good. My first boating experience at camp, a camper asked me to go out in a canoe with her. I had never been in a canoe before. When her dad volunteered to go with us, it was a relief for me. I knew with my pain, canoeing was going to be difficult and painful. I also knew that I didn’t know how to guide a canoe. I didn’t want to get lost at sea (LOL we were at a small camp lake, more the size of a pond) and have to be rescued by the coast guard… also known as the camp life guards. My second experience was in a pedal boat. With CRPS in my leg, I knew peddling was something I couldn’t do. I rode in the back with the camper and we let his mom and my sister pedal. Getting into and out of the boats was difficult with my limited mobility, but with the help of the program staff, I managed.

With my picc line, swimming wasn’t an option for me, so when the blue lodge had swimming as an option, I chose to volunteer in one of the other program areas where the blue lodge was allowed to go. During swimming I often ended up in woodworking and beauty shop. In the beauty shop, children not only enjoyed getting their own hair styled and sprayed with various colors of hair spray, their nails painted, and make-up applied, they also enjoyed doing the hair, nails, and make-up for adult family members and camp counselors. My sister also volunteered at camp. She returned from the pool one evening to find my dark brown hair had turned yellow and my fingernails had been painted to match. In the woodshop, I helped sand wood, located supplies, and complimented the children’s wood burning and painting skills.

For me, messy games was probably the most painful part of camp. Messy games were basically a food fight. Campers and counselors visited stations where they used shaving cream, ice cream, oatmeal pudding, etc. to see who could get the messiest. If I ever go back to volunteer again, I’ll probably sit out of messy games. The textures of the messy stuff running down my leg sent my CRPS pain into overdrive. The green lodge may have won messy games, but the blue lodge kids were named the rootin’-est, tootin’-est messy game players. I was a blue lodge counselor. Go Blue!

The theme for our week at camp was “Home on the Range.” One night we were served a themed dinner. The buffet table was transformed into a covered wagon and the room was decorated with cactus, bandannas, and western gear. Adults and children came dressed in their western gear as well. I must admit dinner was a bit scary that night. I was held at gunpoint just before dinner by a rough cowboy (one of the CCK courageous campers). We had cactus juice to drink (lime Gatorade) and cow pies (brownies), and hay stacks (rice crispy treats) for dessert.

The week ended with a camp wide viewing of a slide show they had created using photos and videos of things the children had been doing at camp. We watched the video, had lunch, and departed. We, the counselors, formed a line and cheered at the camper and their families left camp. With goodbyes, hope to see you next years, and with tears in their eyes, the campers headed back home.

The week was amazing and I’m so thankful that I was able to be a part of creating this magical moment for those courageous kids. Living with chronic pain and slow motility, I kind of understand what these children face in life. Chronic pain conditions are invisible illnesses because pain cannot be seen. The majority of people living without chronic pain don’t understand that although we look like nothing is wrong with us, we are in pain all the time. Many of us live in communities or go to school where we are the only person we know with out condition. We often feel alone and isolated. Camp allows these children a week-long experience where they get to be with other people who are like them and understand them.

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The above picture was borrowed from the camp Facebook page. The Center for Courageous Kids is a non-profit medical camp and can only continue to offer this amazing camp experience for these children with support from others. If you, my blog followers, readers, and fellow pain warriors would like to “push to open” the Center for Courageous Kids and help these courageous kids continue to have a place where they can go and be surrounded by people who understand and support them, you can make donations to the Center for Courageous Kids by following these links to visit their website or Facebook page.

This post wouldn’t be complete without recognizing TCAPP, RSDSA, The U.S. Pain Foundation, Rock Out to Knock out RSD, and Cash Express. These groups helped sponsor the pediatric pain camp at CCK. Again I’m thankful for a camp like CCK, volunteers who work tirelessly to make the camp a success, and the families who  come out and have a great camp experience.

I end, leaving you with the camp cheer.

CCK, how do you feel?

We feel so good, Uh, we feel so good! Uh

clap clap…clap clap clap… clap clap…clap clap clap… clap clap clap… clap clap clap

Woo clap uh

Posted in Chronic Illness, Creativity, Family, Gastroparesis, Invisible Illnesses, My Life

Life Happens

I clicked on my blog and realized it has been a month since I last posted. My last story was a sad one, but the month since then has been even harder and sadder. With a close relative having a brain bleed and a good friend suddenly passing from this life, it has been a stressful few weeks. I’m surviving though and I’m thankful for my tight-knit family and friends. We’ve supported each other through it all. God brought us to it and He is going to see us through it.

I did have some fun this past month though. My niece and I made a birthday cake for her sixth birthday. We made a Candy Land cake. We got the idea from Cookies, Cupcakes, and Cardio. I thought it turned out cute and it was very easy to make. Thanks Cookies, Cupcakes, and Cardio for the great YouTube video. We baked a sheet cake, put a layer of butter cream frosting on it, and topped it with candies. We followed the YouTube video, but my niece wanted us to add the people from the game board (Grandma Nut, King Candy, Mr. Plum, Queen Frosting, etc.), so we copied, laminated, and attached them to popsicle sticks to put them on the cake. We also made edible gingerbread man playing pieces by molding airheads candy  using the actual plastic playing pieces from the game.  We pressed the airheads on the playing pieces, cut away the excess candy, and peeled it loose. We ended up having to stick toothpicks in the playing pieces to hold them up because the airheads drooped when they got hot. If I had found a way to mold them out of the Wilton candy melts, they would have held up better, but I was short on time and didn’t get that figured out.  Everyone loved the cake and my niece is already trying to pick out her birthday cake for May 2018. LOL

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Today I took some time for myself and did some browsing on Pinterest. Self-care is important and I enjoy browsing Pinterest for decorating ideas, inspirational quotes, etc. I can’t afford to buy a lot of things, but I can make a lot of cheap decorations for my house. I must admit that the following sign made me stop and chuckle. Those of you living with chronic invisible illnesses can probably appreciate it.  I hope no one takes the sign as me being rude or disrespectful. I promise I didn’t have any specific person in mind when I saw it. I don’t consider any of my friends stupid. I just saw it and found it funny because I often hear people talking about how good I look even though my big weight loss was caused by gastroparesis starving me. Being sick doesn’t necessarily make us look bad.

May anyone with a chronic illness get a good giggle out of this

 

I’ll try to post more in the upcoming days about what life has been like the past few months with CRPS and Gastroparesis.

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?

 

Posted in #MyMightyMonth, My Life, Random Acts of Kindness

#Selfie Kindness

Note: I apologize in advance for the length of this post. I don’t normally write this much. This post is not intended to offend anyone. Sometimes life gets tough and we all just need to vent a little. When life gives me lemons, I try to make lemonade, but when the sugar bowl is empty lemons tend to be a little sour. Sometimes we all need to vent. I’ve been told it’s not healthy to bottle it all up inside.

Personal prompt: What is the kindest thing you can do for yourself? Make a list of ways you can accomplish this.

The way I see it, there are four kinds of people in the world: the person who doesn’t care about anyone including their self; the person who cares about their self, but no one else; the person who cares about everyone else, but not their self; and the person who cares about everyone including their self.

As selfish as it may sound, the kindest thing I could do for myself would be to take better care of myself. As cliché as it may sound, you can’t help others until you’ve helped yourself.

The first step I need to take in order to take better care of myself is learning to say no. It’s okay to say no if you don’t feel like doing something or you know it’s something that will make you sick. I need to learn to say no when I’m not feeling well and someone wants me to do something as well as when I know eating something is going to make me vomit. When something that looks and smells good is sitting in front of you and someone asks what did you think about my new recipe, it’s hard to say no.  However, for my own well being, I need to learn to say no.

Second, I need to learn to ask questions.  When eating at a restaurant or someone’s house, it’s impossible to know what ingredients were used without asking.  There have been times that I’ve eaten foods I thought were safe and ended up in the bathroom vomiting. Later I found out there was an ingredient used that my stomach doesn’t tolerate. If I had asked questions, I would have known it was going to make me sick.

Third, I need to train myself to eat small meals made with gastroparesis safe foods several times a day.  I’ve been told that people with gastroparesis need to eat six small meals a day instead of three regular meals.  My problem is remembering to eat. I’ve gone so long without eating much because of my gastroparesis that I don’t get hungry and sometimes I forget to eat.  I’ve been working on reminding myself to eat and I’m getting better at it.

Last, I need to learn to pace. I’ve been reading a lot lately about chronic illness and pacing. I must admit, I’m not good at it. I don’t have a lot of good days where I feel like doing things, so when I do, I try to get as many chores done as possible.  Then I crash for several days. I’m learning that if I do a little every day, even when I don’t feel like it, I don’t suffer as bad as when I try to do it all in one day.

Creative Prompt: Design a restaurant. What kind of food does it serve, where is it located, etc.?

I’m not sure what direction the writer of this prompt intended for it to go, but I know where I’m taking it.

Living with complex regional pain syndrome and gastroparesis, going to a restaurant isn’t always a pleasant experience.  I realize the designers of restaurants try to maximize space so that they can serve the most customers. Most sit down restaurants have booths or tables.  Having used a wheelchair for several years, I realize most of these restaurants were not designed to accommodate people in wheelchairs. I’m usually asked to sit in an aisle because the tables are too close to each other to allow a wheelchair between them. Other times, I’ve been asked to sit between the table my family is sitting at and the one next to it.  The first scenario puts me in the line of traffic where I’m constantly having to move so people can get through and constantly being bumped by people passing. My wheelchair is not only bumped by other customers, but I also get bumped by the waiters and waitresses carrying food to the tables. The second puts me in a location where I hear as much of what is going on at the neighbors table as I do my own.  Both situations are awkward, not only for me as the person in the wheelchair but also the people bumping into my wheelchair, the people asking to be excused, and the people  whose space is being cramped because I’ve been asked to sit between two tables. I might mention, sitting between two tables means I have to eat off a table beside me instead of in front of me. I’m left wondering what kind of loss it would be to remove a couple of tables and make more space?

If I were designing a restaurant, I would make sure each table had space around it to accommodate people requiring more space. Some restaurants have a “handicapped” accessible table, but if there is more than one person in a wheelchair, only one can sit there. I would solve this problem by making sure all tables were accommodating. I don’t know anyone who would complain about having more space between them and the table next to them.  Why not accommodate everyone?

My next concern would be restrooms. If a restaurant is only going to offer one handicapped stall, they need to ban employees who aren’t handicapped from using it. It doesn’t bother me that people who aren’t in wheelchairs use the stall. If it’s the only stall empty and you’ve got to go, by all means, use it, that’s what it’s there for. My problem is when people use the handicapped stall as their telephone booth, especially employees on break. Personally, I think common courtesy would be to take care of business as quickly as possible no matter what stall you are in so that the next person can use the restroom.  Restrooms were created for one purpose and it wasn’t to make phone calls, send text messages, or play games.  On several occasions I’ve had to wait to use the restroom and I could hear the person in there talking or texting on their phone… when they finally came out, it was a restaurant employee who couldn’t seem to apologize enough. I suppose if I had wanted to cause problems, I could have complained to the manager, but that’s not the type person I am. On one occasion I was at a restaurant and started feeling sick at my stomach. I excused myself from the table and went to the restroom. I was gone so long my mom came to check on me because she thought something might be wrong. I was trying to figure out how to squeeze my wheelchair into a regular stall. Sometimes I can focus on my breathing and it helps. This time it wasn’t working. I told mom, “I’m trying real hard not to vomit in the floor.”  She grabbed the trashcan and told me to use it. About that time the handicapped stall door opened and out walked a waitress. She knew I was sick. She had heard me say I was about to vomit. She apologized. Then, she got to listen to me vomit while she washed her hands. I hope the two regular sized stalls were occupied when she went in because if I had vomited in the floor like I thought I was going to, she would have had to explain to the manager why she was In that stall when the other two were empty.

I know it’s to save space, but what would it hurt to make all stalls accessible instead of just one? If I designed a restaurant, all bathroom stalls would be accessible stalls.

Now that I think of it why do tables and stalls have to be different for people in wheelchairs? Why can’t places just be accommodating for everyone? I don’t know anyone who would complain about their bathroom stall being more spacious or there being more room between them and the people at the next table or booth.  I’m sure waiters and waitresses wouldn’t complain about having more space to get through when carrying heavy trays loaded with food and drinks to the tables.  I’m sure people would complain if restaurants started putting in special tables and restroom stalls, for politicians only, or doctors, or lawyers, etc. People would probably boycott in the name of discrimination. The Americans with Disabilities Act passed a long time ago, but people with disabilities are still discriminated against in public and it’s legal.  Interesting.

Enough on that. I think I’ve made my point. I would name my restaurant Accessible Eatery. Not only would I design the building to be spacious and provide equal accommodations to everyone, I would also design the menu to be accommodating.  I would have a large kitchen divided into two sections. One section would be used for prepping, preparing, and plating regular meals, while the other section would be used for prepping, preparing, and plating major allergen free meals. Just because a person can’t eat certain foods doesn’t mean he or she should have to just sit and watch everyone else. I would have a diverse menu that offered choices to accommodate not only people with food allergies, but also people with dietary restrictions. Most restaurants offer something with lower fat, lower salt, and lower sugar, but usually it’s like the accessible table and restroom stall, there’s only one option available.

Now that I’ve said all of that, do I think this restaurant will ever exist? Probably not. We live in a money hungry world where everyone is out to make the most money, regardless of who they have to walk all over to get it. In reality, it would probably take billions of dollars to build and run a restaurant like I just described.  So, while I would love to see a chain of “Accessible Eateries” popping up across America and around the world, I doubt it’s going to happen.

However, if you are reading this post and you or someone you know works in a nice sit down restaurant either seating customers or waiting tables, please take into account that people in wheelchairs are paying for their meals the same as every other person who walks through that door on two legs. We want to enjoy a  pleasant meal with our families and friends the same as everyone else.  Please seat us in an area where we aren’t going to have to move or be bumped every couple of minutes. I’m not asking you to redo the building or provide me any special treatment. All I’m asking for is a little common courtesy. Is that too much to ask?