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 Dogs, Thankfulness

Lucky

I’ve been trying to decide since Sunday, May 7, whether or not to share on my blog that my dog, Lucky, died that day. While Lucky wasn’t a registered service animal, she was my at home canine helper. For the past eleven years, she has been more of an emotional support dog than I can begin to explain. I am so thankful to have had Lucky for those eleven years. She protected me and took care of me.  After debating with myself all week, I finally decided to share this post of pictures.

The above pictures of Lucky were taken when she was just a few weeks old. Lucky was born, along with four other pups, February 28, 2006. Lucky’s mother refused to accept the runt and left her cold and stiff to die. I came to the rescue and saved Lucky from an untimely death. How can anyone not fall in love with such a cute pup? Eleven years and twenty something pounds heavier, she still thought she had to sleep with her head on my chest.

As you can see from these pictures Lucky was spoiled rotten. She had her own box of toys to play with and was allowed to sleep in the bed. She was a smart dog and could bring the toy requested. She knew the difference in a ball, a rope, and a squeaky toy. She didn’t sleep curled up at the foot of the bed like most dogs. Instead, she stretched out like a person and slept under the covers with her head on a pillow.

After four years in the house, Lucky chose to move outside. I would let her out to play and she didn’t want to come back in. I didn’t want to leave her outside, but she kept begging. So, we bought her a kennel and dog house. She loved it out there, but still liked to come back in and live in the house during cold winter and hot summer days.

Lucky liked hanging out with me. One winter I found her watching the weather. I’m not sure if she was wondering if the snow was going to be over soon or if she had a crush on the weather man. She liked to go wherever I went, even if it was just going for a ride on the stationary bike.

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Posted in Chronic Illness, Kentucky Derby

Why I’m Cheering for Patch…the horse with one eye

While the song may state “the sun shine’s bright in my Old Kentucky home,” the weather man is predicting cloudy skies and the possibility of rain Saturday May 6, as the 143rd Kentucky Derby is being run at Churchill Downs in Louisville, KY. I must admit, I’ve never been to the derby or paid much attention to it. The news describes the Run for the Roses as the greatest two minutes in sports history. While other people are focused on betting and buying the perfect hat to wear, the derby caught my attention this year for a different reason.

While scrolling through the news, I saw an article about Patch, a horse with one eye. According to the news, Patch is the fourth horse with one eye to run in the derby. Patch is described as being the underdog, but is quickly becoming a fan favorite.

While some might see a horse with one eye running in a race such as the derby as unimportant or useless, for me it’s worth cheering for. Living with chronic illnesses, there have been times in life that I’ve been viewed as “the underdog.” Since being diagnosed with complex regional pain syndrome in my right leg, several people have made comments to the effect that I should be thankful I’m not a horse because horses with bad legs are put down. I’ve never liked that comment. I may have a weak and painful leg and there are things in life that I can’t do because of it, but there are other things I can do. Just because Patch had inflammation and had to have an eye removed, it didn’t stop the horse from running. Patch may be considered disabled because Patch is lacking one eye and can’t see the way other horses do, but just as the news pointed out, that disability hasn’t sidelined the horse. Just because Patch lost an eye, trainers didn’t give up on the horse. In the same way, I’m thankful that I’ve not let pain, inflammation, and weakness cause me to give up my dreams of walking again someday and I’m thankful that my doctors and physical therapist haven’t given up on me either.

We live in a world where the underdog is often overlooked. I’m cheering for Patch because as a chronic illness warrior, I’m inspired by a horse with one eye running in the Kentucky Derby. I’m sure Patch, the trainer, and the rider had to make changes as they adapted to Patch only having one eye, but they haven’t given up. In my eyes, it would be wonderful if a horse with one eye won the derby, but whether Patch wins the race Saturday or not, Patch is a winner in my eyes. Go Patch! Go chronic illness warriors!

Posted in Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Courage, Gastroparesis, Inspiration, Life Lessons, Rare Diseases, Strength

Broken

Yes but no one whats a broken crayon

I saw this quote on Pinterest a few days ago and as a person living with a rare and several chronic illnesses, it made me stop and think about life.

When you buy a box of crayons, you expect unbroken crayons with those perfect little crayon points. You don’t expect a box full of pieces of crayons. As a matter of fact, most people throw away broken crayons. I hadn’t really thought about it until I saw the quote, but broken crayons do still color, so why do they get thrown away?

Living with multiple chronic illnesses, I can relate to the broken crayon that still colors. Due to illnesses beyond my control, my body is “broken.” I have pain and weakness in my legs and feet and am unable to walk. My stomach doesn’t empty, which makes eating difficult. It also adds to my weakness and causes me to be tired. Sometimes, I feel like people treat me like the broken crayon. Maybe I’ve got it all wrong, but it seems to me as though I get left out of things and I’m sure it’s because people think I’m “not able” or “don’t feel like it.” Maybe they are afraid to ask out of fear of hurting me.

Sometimes I feel like I, like the crayon, have been thrown out because I’m broken. However, like the crayon is still able to color, I still have purpose and am useful. I may not be able to run marathons or win pie eating contests, but there are lots of things I can do and am good at. My ears work fine and I’m a good listener. While I may be physically weak, I’m spiritually strong and am willing to be a shoulder for others to lean on. I may spend most of my days in bed because I simply do not have enough energy to get up, but I can talk on the phone and send emails. I can also inspire others going though similar situations by blogging about my experiences. When my carpal tunnel and neck pain cooperate, I can knit, paint, and do crafts. I may not currently be physically capable of working, but I still have purpose.

Being disabled doesn’t make me useless, it just points my life in a different direction and gives me a new purpose.  Small chunks of broken crayon are often disposed of because they are difficult to color with. However, I have melted broken crayons before and used cardboard and plastic molds to form them into new crayons. Instead of putting them in the trash, I made new, often larger, multi-colored crayons. Just like crayons broken into little pieces can make coloring a little more difficult, CRPS and gastroparesis have made my life more difficult. Many of the activities I did before CRPS (hiking, playing volleyball, etc.) are no longer possible. With gastroparesis, I can no longer eat many of the foods I once enjoyed. Just like I took the broken pieces of crayons, melted them. and molded them onto new crayons with new purpose, I’ve had to take my broken life and put the pieces together in a new way to find purpose. I’ve had to find ways to adapt. I’ve learned new things, found new hobbies, and adapted to my new life. I miss my old life before CRPS and gastroparesis, when things seemed easier and life seemed less complicated, but I’ve come to accept my new life and continually look for things I can do to make life better, both for me and others.

If you are struggling with a new medical diagnosis or changing abilities because your chronic illness is getting progressively worse, I encourage you to keep fighting. Don’t give up. As chronic illness warriors, we must stand tall and stick together. Talk to others fighting the same fight. There’s strength in numbers. You may feel broken, but know that broken crayons still color. No matter how broken your life may seem, you are very important. You are loved. Your life still has purpose.

 

Here are a few more broken quotes I came across that I liked..

King David committed adultery & murder - he sinned big, but repented bigger - he is a model of what real repentance looks like - he wrote Psalm 51 as an agonized cry to God for forgiveness - God not only forgave him but called David "a man after His own heart" Like & Repin thx. Follow Noelito Flow instagram http://www.instagram.com/noelitoflow

Beautifully Broken Quotes | Broken clouds pour rain, Broken soil sets as fields, Broken crop yield ...

 

Posted in Uncategorized

Understanding

There are a few things in my life that I wish others could understand. Here are five of them…

  1. Wheelchairs come in multiple sizes for a reason and are used for mobility.
  2.  I’m not lucky because I can’t walk.
  3. I did not choose CRPS or gastroparesis.
  4. I’m not eating because I don’t like vomiting in public restrooms.
  5. I appreciate your kindness, but please stop telling me “You look good.”

Point one… anyone could end up in a wheelchair at any given point in life. If I had a nickel for every time someone asked me what I was doing in a wheelchair, I might be able to afford a better wheelchair. It seems everyone feels the need to stop a young-looking person and ask that question. They ask the question in a way that makes me feel like they think wheelchairs are for the elderly or that I don’t need it. First of all, I know children and babies who are not able to walk and have to have mobility aids, so people need to accept that wheelchairs, walkers, crutches, canes, etc. come in multiple sizes, so they can be used by people of all ages and sizes. Second, wheelchairs are not comfortable and I would not be sitting in it if I didn’t need it. As for what I’m doing in a wheelchair… if you have to ask the question, expect a smart alec remark. I’ve been told there is no such thing as a stupid question, but if you have to ask what I’m doing in a wheelchair, I’m going to make you feel stupid by either telling you the obvious “moving from one place to another” or if I’m in a really good mood I might say something like “I’m flying to Mars… can’t you tell?” If you don’t want my smart alec answer, don’t ask the question.

Point two… being in a wheelchair does not make me lucky. I’ve been told on several occasions by able-bodied people that I’m lucky to be in a wheelchair because I don’t have to walk everywhere. What they don’t seem to understand is I was an active energetic teenager when CRPS took over my leg. I enjoyed volleyball, softball, hiking, and dancing. Oh how I’d love to go for a hike or run and play with my nieces and nephews. While a walk around the park might not make my legs and feet tired and sore, it definitely takes its toll on my shoulders and arms. It’s also a struggle to keep sores from forming from thru pressure on the bottom of my hip bones. Now don’t misunderstand me, I’m not complaining. I may not see being in a wheelchair as a sign of luck, but my wheelchair is a blessing. My wheelchair makes it possible for me to go to the grocery store, doctor appointments, and church. While I can’t partake of many of the activities able bodied people enjoy, I celebrate the fact that mobility aides make it possible for me to leave my bed, move about the house, and occasionally visit a family member or friend.

Point number three… people can’t control whether or not they get a chronic illness and everyone isn’t going to be cured. I don’t know where this idea comes from, but many people make comments that make it seem as though my chronic illnesses are something I’ve chosen or caused and I should be able to easily fix them by changing my diet, exercise routine, etc. Let me assure you, I did not choose the pain and other side effects of CRPS and I did not choose the vomiting, nausea, and pain of gastroparesis. Both of these are chronic illnesses that even the doctors are not sure why I have them. It’s not that I don’t have enough faith or that I’m making unhealthy choices. It’s just something that happened. For those who think I need to have more faith, I wish they could be me for a day. My faith is just as strong as it ever was, but I’m willing to accept that God might have bigger and better plans for my life with CRPS and gastroparesis. Many people look at chronic illnesses negatively, but I’m willing to face the challenges life throws my way and make the most of the hand I’m dealt. Sure, I could easily crawl into a dark hole of despair and hopelessness or I can accept my body the way it is and enjoy life to the best of my ability. It may not be the life I chose, but I get to choose how I live it. I have days that I get down, but I can’t let myself stay in that dark place. I must choose to be happy.

Point number four…vomiting in public restrooms is disgusting. It never fails when I get up the nerve and feel well enough to venture out to an event, that people notice how much weight I’ve lost and start pushing food my way like they think I’m starving and need to feed myself better. I explain that I can’t eat a lot of foods because I have gastroparesis and I will vomit if I eat too much or the wrong kinds of food. It’s not that vomiting in front of people bothers me, it’s that the thought of vomiting in a public commode grosses me out. I know people who squat because they are afraid to sit on public commodes. For those of us with gastroparesis, if we need a commode, it’s not our bottom that’s sitting on it. I don’t touch the commode when I vomit, but imagine sticking you face close enough to a commode, that hundreds of people have used, to vomit and vomiting so hard that it splashes back in your face. Those self flushing commodes make it even more of a challenge. If you’ve ever used one that’s extra sensitive, you know what I’m talking about. If you are sitting on a self flushing commode that is extra sensitive, it flushes almost nonstop and sprays water on you. If your vomiting and it is flushing, that water hits your face instead of your bottom, throwing vomit and germs back at your face and hair. Personally, I find that too disgusting. I’d rather eat in the comfort of my own home, where if I get sick I have my own private commode to vomit in. In the event that I’m going to be away from home and need to eat, I carry small trash bags (sold in both the pet and baby sections at Walmart). I can vomit in them and throw them in the trash. Seems much more sanitary to me than sticking my face where everyone else’s backside has been.

Point number five… looking good and being healthy are not one and the same. I appreciate all the kindness I’m being shown. I know I’ve lost a lot of weight and I am no longer obese… when anyone loses fifty pounds it is noticeable. I really appreciate all the comments about how I’ve lost so much weight, how I look so good, and how my color is good, but I wish people would try harder to understand what I’m going through. While I probably needed to lose some of that weight, I get tired of being told how good I look and being asked what I’m doing to lose weight. I’ve finally learned to be honest. At this point in life,  I have little control over my weight. I eat multiple small meals a day, but my stomach often rejects them. I’ve lost the weight because gastroparesis has starved it off of me. When I tell people “I’m basically starving”, I get this look that says, “You couldn’t really be that sick” and then I hear one of my favorite phrases, “Well, your color is good. You don’t look sick.” I must admit sometimes it makes me feel like screaming. Being complimented for being sick seems a little odd to me. Mom says people make her feel like she’s lying about how sick I really am because I don’t “look sick” to others. There were a couple of weeks before my picc line was put in that no one saw me. Well, one of my aunts did stop by to visit and saw what I looked like. When I answered the door, she looked like she had just seen a ghost. I wasn’t just sick. I was very sick. I knew something was happening to me, but didn’t know what to do about it. My body was turning grey and my skin could be formed like play dough or clay. It would hold the shape I formed it into. My aunt later told me that I did not look good that day when she stopped by. She had been very concerned. My color may be good now, but it’s because I’m getting IV fluids through my picc line daily at home with dextrose and potassium added to it. It’s hard to get people to understand that my IV fluids are what makes me look “healthy” or like I have “good color” to them. Even with the fluids, there are days when I’m very pale and weak. When I don’t feel good I don’t go anywhere. If you see me at church or the grocery store it’s because I’m having a better day.

 

As I’ve heard many others with chronic invisible illnesses say, I’m not looking for pity. I’m just asking people to be more understanding. Yes, I am aware that my chronic illnesses are invisible. It’s hard to convince people that it’s real and not just in my head. Most of the symptoms associated with CRPS and gastroparesis are invisible. Other’s cannot see pain or nausea. Unless you see my leg on a day that it’s swollen or purple and cold or are nearby when I vomit, which is sometimes as many as twenty times a day, you may not realize I’m even sick, just by looking at me. If you have a family member or friend living with a chronic illness, I encourage you to learn what you can about their illness. Learning a little will show them you care enough to want to understand them and their condition better. We aren’t looking for pity, we just need people to try to understand, to encourage us positively, and to care.

 

 

Posted in Dogs, Life Lessons

Oh me of little faith

Sometimes in life, it’s better to live in the present and not worry over what may or may not happen tomorrow. I worried all day yesterday because my dog was sick. I know she is getting old and I was afraid the vet was going to tell me she needed to be put down. It turns out that I was worried for nothing. Lucky has colitis, which is causing her to run a fever and pass blood from her bowels, and what I thought was fluid was just fatty benign tumors. The vet prescribed her antibiotics, probiotics, and something to coat her stomach and intestines.

Lucky showed us how much spunk she still had in her while we were at the veterinarian’s office. She didn’t want any strangers touching her and she made that pretty clear. It was a new veterinarian and a new office. Who doesn’t get a little nervous when seeing a new doctor? She didn’t want them to check her temperature or check her for worms. She didn’t have any worms, but they had to put a muzzle on her to keep her from biting anyone while they checked. A few days of medicine though and she should be back to her old self. The vet explained everything to me about how the digestive tract works and what each medicine does. When he finished, I laughed and said, “I have digestive tract issues and you just explained everything about my dog the same way my doctor explained my issues.” I think he wondered why I set there and allowed him to explain it all. I was trying to be polite and allow him to do his job. It doesn’t hurt to get everything explained again.

While the vet was explaining the medicines and I was paying the bill, mom took Lucky outside where she could calm her down and take the muzzle off. Lucky was sitting in the van smiling at mom when I came out. Lucky had laid in her kennel yesterday and not done anything. This morning she wouldn’t eat her food and acted like she couldn’t get in the van. All they did at the vet did was a thorough exam. Lucky didn’t get any medicine until we were home. Mom said when they went outside to go home Lucky jumped up in the van like nothing was wrong. Lucky laid in the back of the van and smiled all the way home. I think she knew where we were going and that we had medicine to make her feel better. All my worrying and it turned out my dog was just trying to be like me. Dogs are smart animals. Sometimes I wonder if they are smarter than their owners.

Posted in Dogs

Dog Crazy

It’s been over two weeks since my last post. It’s been a bitter-sweet two weeks. Those two weeks have been full of ups and downs, happiness and heartache, blessings and trials.

I had an appointment last Wednesday to get my gastric stimulator adjusted. The past weekend has been a busy weekend and I’ve basically lived on jolly ranchers, so I really don’t know if the adjustment is helping or not.  One of my aunts passed away on Friday and I didn’t want to be sick at the service this weekend, so I didn’t eat. I did eat grilled chicken yesterday for lunch and egg whites for dinner, but both made me sick. Sometimes it takes a couple of weeks for the adjustments to help, so I’ve still not given up on the stimulator helping. There’s still a lot of adjustments that can be made to the stimulator settings.

Today, I’m a little down. Lucky, my eleven year old dog is sick today. I’ve not been able to get her to the vet yet. Lucky has been my baby. When Lucky was born, she was the runt of the litter and her mommy pushed her aside. Lucky was a cold stiff puppy when she was brought in the house. I held her with warm towels and fed her warm milk to warm her. After warming her up and saving her life, we tried to put her back with the litter of pups, but she was smaller and weaker and kept getting pushed aside. So, I purchased a dog training crate and gave her a basket filled with a fluffy towel to sleep in. When she would whimper at night, I’d put her in the bed with me and she would curl up on my chest. She was so tiny I could hold her in the palm of my hand. However she quickly began to grow. When she was just a few months old, all the puppies became sick. Three of the five puppies died from what the veterinarian diagnosed as parvo. By this point, we had brought a second puppy in the house so Lucky wasn’t alone. The two puppies that survived were the ones in the house. The outside dogs had been sick first, so we knew to watch the inside ones. We used a medicine dropper and force-fed them to keep them hydrated. I’ve been told that most dogs don’t live through parvo, but Lucky did. The second dog, which belonged to my sister, died a few years ago. Lucky is the only pup from the litter left. Having no children, Lucky has been my baby. During her first four or five years, she basically went everywhere I went. We have pictures of her stretched out in our camper when we would go camping and sleeping in my lap as we sat under the stars at night.

As Lucky became older, she started wanting to be outside more. I would let her out on the porch to play during the day. Then, she started wanting to stay out there all the time. She didn’t even want to come in at night. As much as I didn’t want to, I let her have her way. We bought a kennel and dog house. She seemed to love it. However, she still loves our house too. She is house broken and still enjoys spending cold winter and hot summer days inside sprawled out on my bed. Lucky’s health has been declining for a couple of years. I always take her to the vet when she is sick and bring her in and baby her. This time, I can’t bring her inside because of my own health issues. I can’t chance getting a nasty infection in my picc line and getting sick myself. I’ll have to take her to the vet and see what we can do.

As I sit here typing, I find myself crying. Those people who’ve never had a dog to love them like Lucky loves me, just can’t understand. She may be “just a dog” in their eyes, but she’s been my baby. She’s been my protector. She’s been my friend. In her younger days, she laid by my door and refused to let anyone in my room on days when I was sick. Just last winter, hen Lucky came in and spent a few weeks in the house, she still wanted to sleep with her head on my chest. On days when I’m not feeling well and don’t know how I can go on, Lucky is always and has always been there with a smile. Yes, dogs can and do smile. The past few years, when I would go outside on my motorized scooter, she was always at her kennel door jumping up and down in anticipation of a treat or a walk around the yard. Today, Lucky doesn’t come to the door. She lays in her house and looks out at me. I’m hoping I can get her to the vet’s office tomorrow, but a part of me is afraid of what the vet might tell me. I think I understand what the person meant when they said, “A dog is man’s best friend.” Dogs may not be human and dogs may bark not speak, but dogs are supportive and people can come to love them dearly. No matter what the vet says when I take Lucky there, one thing is for sure, Lucky has been a good dog. For the past eleven years, she gotten me through a lot. She’s been spoiled rotten.  She’s been played with. She’s been well fed and taken care of. She has been loved. What more could a dog ask for?

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 Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Gastroparesis, Invisible Illnesses, Life Lessons, Rare Diseases

Just Chillin’

For those of us living with chronic health issues, life can get a bit overwhelming at times. Doctor appointments, treatments, etc. can be stressful for anyone, but when you figure in the uncertainty of chronic illnesses, things can get out of control pretty quickly. We quickly learn to look for ways to make life a little easier. I don’t know about anyone else, but I’m willing to try anything if there’s a possibility it might help.

With my Complex Regional Pain Syndrome, pain medications didn’t control the pain. They just made me sleep 18-20 hours a day. When I was awake, I was tired and didn’t function well. I basically didn’t even know I was alive. I just knew I was in pain. I didn’t like the way the meds made me feel, so I refused to take them. I told my doctors we needed to find another form of treatment. Like most people with complex chronic illnesses, I’ve tried many things. I’ve researched CRPS and read books on how our bodies process pain. I’ve done relaxation, psychology visits, physical therapy, graded motor imagery, mirror box therapy, injections, blocks, etc. The list of things I’ve tried seems endless. As I’ve mentioned before, my doctor implanted a nuerostimulator in 2004 to help block pain signals. I think everyone living with CRPS would agree that it’s very painful. I wouldn’t wish it on anyone. The nuerostimulator helps make the pain more tolerable, but I still cannot walk due to pain and weakness. It’s not a fix, but I’ll accept every little bit of improvement I can get.

Gastroparesis has been just as challenging. My doctor diagnosed me with idiopathic gastroparesis. Idiopathic means they don’t know what caused it. I imagine that diagnosis must be just as frustrating for the doctor as it is for the patient. It’s very difficult to fix something, when you don’t know what needs to be fixed. They do know that my gastric emptying scan shows that my stomach isn’t emptying my food into my small intestines. They also know that a biopsy of my stomach wall shows a lower than average number of nerve cells. However, they don’t know what is causing those two things. We tried medicine and that didn’t help. The trial gastric neurostimulator raised my stomach’s ability to empty from 30 percent to around seventy percent, so I agreed to have a permanent nuerostimulator implanted. Again, this nuerostimulator isn’t a fix either, but it is an improvement. I’ve also had to make some major changes to my diet. They say fat and fiber slow down digestion and since my stomach is already too slow, they have encouraged me to stay away from fatty and high-fiber foods. It has taken some adjusting to learn how to make tofu and other vegetarian protein packed meat substitutes taste good, but it’s better than being sick all the time.

Somewhere along the way, I started hearing about restorative yoga, essential oils, and aroma therapy. I live in a small town where these alternative treatments are not readily available, so I did some internet research. I thought I might find a restorative yoga class online that I could do at home while watching a video. I’ve still not found a restorative yoga video that fits my specific needs, but I did find some yoga positions that help ease Product Detailssome of my pain. I also found something on Amazon called Pinga, which is advertised as a 30-day pain relief program for treating and defeating complex regional pain syndrome. The entire program costs less than ten dollars and claims that it may free a person of chronic pain in as little as thirty days. I must admit, I was pretty skeptical, but it sounded simple and I was willing to give it a try. The book comes in paperback and digital format. The digital book was cheaper and allowed me to start reading instantly, so I downloaded the book from Amazon here. While the book contains scripts of the four recordings (introduction, session one, session two, session three), I felt I would benefit from having the MP3 recordings to guide me. The digital book cost almost six dollars and each of the four recordings was less than a dollar each. So, you are probably wondering  “What is Pinga and how does it work?” The book basically explains that you must do any of the three sessions, three times a day. You can do each of the three sessions one time each day, one session three times each day, or any combination of the three. The book explains that the most important part is to make sure you do three session each day for at least thirty days. Each session lasts from ten to fifteen minutes, so it doesn’t take a lot of time. In each session, a gentle relaxing voice leads you through focused breathing, relaxation techniques, and guided thinking/imagery.

 

As skeptical as I was, I wanted to complete the program and see if it worked. If you are still reading this post, I’m sure you are wondering, “Did it work?” My answer would have to be yes and no. I know that doesn’t seem like a fair answer, but it’s the one I have to give. After thirty days, I’m not pain-free. The program didn’t heal me. However, I’ve continued to use it periodically since purchasing it in 2014 and I’ve discovered that on days that I’m having more severe flare-ups, I can turn on a session of Pinga and relax. It doesn’t make my pain go away, but it does help me relax, which relieves the tension the pain is causing in my body and helps ease the pain a little. On nights when I am having trouble sleeping because of my complex regional pain syndrome and/or gastroparesis, I find myself turning a session of Pinga pain relief on, putting it on repeat, and letting it play all night long.

Will Pinga help everyone relax and rest better? Absolutely not. The guided imagery requires a person to be able to turn loose of their mind and let their imagination take them wherever the session leads it.  Just like everyone doesn’t get the same relief from medications and other treatments, meditation and guided imagery doesn’t work for everyone either. Like I said, it didn’t defeat my CRPS. Some days it doesn’t help at all, but on the days it does help, it’s worth it.

I share all of these things that I’ve tried as a way to encourage others not to give up. We get our hopes up, thinking a treatment might work and then if the treatments fails, we feel defeated. Every treatment option doesn’t work for every person. Our bodies are all unique and what works for me might not work for you. I encourage you to do your homework. Regardless of what chronic illness you might be fighting against, research the available treatments and don’t be afraid to try even the most simple things. No matter how silly something might seem, you won’t know if it works for you until you’ve tried it. A person can only fail, if he/she fails to try. Stand tall, hold your head high, and show your illness that you are a warrior and you aren’t giving up or backing down.

Posted in Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Gastroparesis, Uncategorized

Patient’s Patience

I’ve been trying to remind myself all day to be a patient patient… which would be someone who is able to tolerate delays in their medical care. Living with CRPS and gastroparesis, I’m used to playing the waiting game. I waited for doctor appointments and tests to be scheduled. Then I waited for results to be available. I waited years for both diagnosis to be made. Then I waited while treatment plans were made. Then I waited for insurance approval. Then I waited for appointments to be scheduled. Waiting is something that those of us living with chronic illnesses often get tired of doing.

For the past year, I’ve had a picc line and home health care to run daily IV fluids to help offset the dehydration caused by my gastroparesis. However, yesterday changed that. Yesterday morning, my home care nurse had come out to change my dressing/bandage and draw blood for labs. When she flushed the picc line after drawing blood from it, fluid shot out. I thought the saline solution had come out at a spot it’s not supposed to. However, the nurse thought she had not tightened the extension on tight enough. She has a nursing degree and it happened so fast that I wasn’t really positive where the fluid had come out, so I took her word for it that everything was okay.  She went ahead and flushed the picc line and everything seemed okay.

Later yesterday evening, I flushed the picc line again and started my IV fluids. My wheelchair kept being wet and I didn’t know why. After about ten minutes of trying to figure it out, I discovered that my IV fluids were dripping out on me rather than going into my body. I stopped the fluids and clamped the picc line so nothing else could leak out. I’d had a hole in the IV tubing a few weeks ago and blood had backed up the picc and dripped out in the floor, so I knew I had to get it clamped off before blood started backing up. I called my doctor, but couldn’t get the person on the phone to understand that I knew where the liquid was coming from and it was the picc malfunctioning. The person on the phone kept telling me my extension just needed to be tightened, but I knew the liquid wasn’t coming from there. They told me to call my home care nurse to come out and look at it. So, I called the home health nurse. She didn’t have to come out. She knew what my picc line looked like because she cleans and dresses it weekly. I was able to describe where the liquid was coming out and she knew my picc had a problem she couldn’t fix, so she told me to go to ER.

After sitting for three hours in the ER waiting area because the place was swamped, I finally got to see a physician’s assistant around 9 last night. She said they would have to flush it to see what the problem was. Ding ding ding. I was the winner. When they flushed the picc line and the liquid came back out exactly where I said it was coming out. Sometimes I feel like doctors, nurses, and others in the medical field think we the patient don’t know anything. I’d had the picc line for a year, I knew there was a problem. The spot where the liquid was coming out was in the middle of the part they put in my arm, it wasn’t where the extension screwed on. So, ER put in a regular IV access and ran my IV fluids for me. My fluids have to be run over four hours, so I was in ER until 2:30 this morning waiting for the fluids to run in. I needed the fluids and was thankful they ran it for me. When they started to release me, they went ahead and pulled the broken picc line out, so I didn’t have to deal with a broken picc. They gave me orders to call my doctor when they came in.

I called this morning as soon as it was time for the doctor’s office to open. Luck was on my side, or so I thought. Someone actually answered the phone instead of it going to voice mail. Unfortunately the person I needed to talk to wasn’t in. She wouldn’t be in until around eleven thirty today and I would only find that out by calling again two hours later. As I said, I’m used to the waiting game. When she returned my call around one she said she would see what she could do about getting me scheduled to get a new picc line put in, but it probably wouldn’t be until sometime next week.

As I sit here typing this it’s  almost eleven p.m. I’ve been vomiting all day and have no way to run my hydration fluids.  I may end up back at ER before the weekend is over for fluids. I’ll just have to wait and see how everything plays put over the next few days. I have the fluids. I just don’t have an IV access site to connect them to.

So, the waiting game continues. Some people say I’m just not aggressive enough when I call. I realize that the person on the other end of the line is working with more patients than just me. They are human and need to be treated with respect also. I’ve waited as patiently as I can. I only called and spoke with someone at the doctor’s office five times today. I wasn’t just calling to see what they were doing, I had questions about how to survive the weekend. I have a very strong dislike for weekend emergency room staff and try to avoid weekend and holiday trips to ER if at all possible. I was just trying to make sure I have the best weekend possible. So, I’ll continue to wait and pray that the weekend passes without any issues requiring immediate medical attention. They are definitely trying this patient’s patience.