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, 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 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.

Posted in Creativity, Gastroparesis, Uncategorized, Valentine's Day

Valentine’s Day – I Love Dum Dums!

Valentine’s Day…a day known for love. Statistics show that an average of 13,290,000,000 is spent annually on Valentine’s day with the top five gift categories being candy, flowers, cards, jewelry, and dining out. It’s hard for me to imagine what a stack of 180 million Valentine’s Day cards would look like, but that’s the average number handed out each year.

Two of the top five gifts contain food. Dinner out usually isn’t a great gift for people with gastroparesis, so I suggest you ask before booking a table in advance. This year, I received a thoughtful gift from my sister. She had bought chocolates, suckers, rice crispy treats, etc. and put together goodie bags for the children at church. When she was finished, she had candy and snacks left over. As silly as it might sound coming from a 36-year-old, I’ve spent more money this year on Dum Dum suckers than I’ve spent of food. Although I had surgery a month ago to implant a gastric stimulator to stimulate my stomach, which is affected by gastroparesis, and help move food through the stomach and into the small intestines, it takes time to get it adjusted right and I still vomit most of what I eat within a short time after eating.  Suckers moisten my extra dry mouth and taste good. I suppose the sugar gives me a quick burst of energy too. It’s probably a good thing I’m not diabetic. When I leave home, I usually carry jolly ranchers, life savers, or some other hard candy. Suckers have sticks and are a little more inconvenient. Back to my story, my sister had a pile of Valentine Dum Dum suckers left over and she gave some to me. I’ve been enjoying them as a treat today. I decided that I would be creative and take a picture of the wrappers. I never realized how hard it would be to make a heart out of squares. Here is my best effort.

dscn5091

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Posted in Gastroparesis, Happiness

Happy Hour

Living with gastroparesis, my choice of foods and drinks is very limited. I’m not complaining though. I can always look around and find others who seem to have life a lot harder than I do. Since having an appointment with a dietician a few months back, I’ve learned ways to shop smart and eat healthier. I’ve been advised to stay away from fatty foods, high fiber foods, fresh fruits and vegetables, and red meats. I’d already figured this out over the past ten years, through trial and error. Before my gastroparesis diagnosis, I just thought I had an intolerance or allergy to beef, pork, milk, tomatoes, and citric fruits. I was basically living on chicken, turkey, and cooked veggies… along with lots of sugar. During my college years, Skittles was a major food group for me. I guess the sugar gave me the energy I needed to keep going. Having the dietician tell me what foods were harder to digest helped to convince me that I was better off to stay away from certain foods. When I go shopping for food now, it’s pretty much the same list each time… instant potatoes, low fat chicken broth, jello, Gatorade, Ensure clear, tofu, rice milk, and egg whites. I try to add a little vegetarian protein when I can, such as veggie burgers. If that’s what it takes to make me feel better, then I am happy to eat that way.

About once a month though, I enjoy happy hour. Happy hour can mean a variety of things depending on who you are talking to. For me, Happy Hour is 2-4p.m. half price slushes at Sonic. Whether I’m in the mood for blue raspberries, green apples, grapes, cherries, watermelon, or any of their other flavors, I’m sure to be “happy.” My stomach is still slow emptying, even with just liquids, so I get the small and slowly sip on it. Even then I vomit it up sometimes, but it’s worth it. That may sound like silliness to those who don’t have gastroparesis, but it’s flavor in my bland diet.

Speaking of diet, I think I finally helped some of my friends understand what I go through on a daily basis. I was excited on Saturday because I went almost four hours without vomiting. Sunday I went to church. It was the first time I’d been there since having surgery three weeks earlier. My brother-in-law asked how I was doing and I responded, ” I went four hours without vomiting yesterday, that’s improvement.” Several people turned and looked at me as if questioning how going four hours without vomiting was improvement. No one asked, although their facial expressions did. I looked over at my brother-in-law and said, “Gastroparesis is like having the stomach flu every minute of every day. Four hours is reason to celebrate.” I think my excitement over not vomiting for four hours made people realize how sick I truly am. Most people think they are terribly sick if they vomit once or twice. Not vomiting is reason to celebrate for those of us with gastroparesis. Even if it is just a jello party, it’s still a celebration… yes I had a jello party once, but that’s another story and we’ll save it for another day.

 

Posted in #MyMightyMonth, Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Creativity, Gastroparesis, Knitting and Crafting

I’m Human..and a little creative

This is yesterday’s journal prompts. I ended up taking a trip to the emergency room yesterday afternoon and was there until around eleven. My picc closed off and I had to go let them unclog it and open it back up. That’s the first time that’s happened. I thought they would have to take it out, but they had medicine that opened it back up. I thank God for that. Without my IV fluids I dehydrate quickly.

Personal Prompt: What is the one thing you wish others knew about you?

I’M HUMAN! Yes, I know all caps is considered yelling and yelling is rude, but sometimes that’s what I feel like yelling.

Sometimes I wonder if I’m unable to hear, unable to speak, unable to think, and invisible. Apparently being in a wheelchair classifies you as being all of the above. I get tired of being treated as some inhuman species just because I have some physical ailments that cause me to need a wheelchair and picc line. For anyone who doesn’t understand, my complex regional pain syndrome and gastroparesis do not affect my ability to see, hear, or speak. Neither disease is contagious either, so you won’t be catching them from me. I’m not made of glass and am not easily broken. If you genuinely care and want to know something, it’s okay to ask me questions. However, if you are only asking me how I’m doing because you think it’s the polite thing to do…don’t bother with asking. The words a person uses to ask questions about how I’m doing, along with the body language that goes along with their questioning, usually makes it pretty clear whether or not they care.

Creative Prompt: Create a list of creative things you’d like to accomplish this year. This can include books you want to read, crafts you want to do, etc.

This year, I hope to buy yarn and knit myself a sweater or a blanket. I’ve knitted lots of hats, scarf, baby blankets, baby sweaters, mittens, stuffed animals, and purses/bags for other people, but I hardly ever make anything for myself. I bought yarn back in November to make me a hat. I must admit, I felt a little selfish buying yarn to make something for myself. I told my mom that and she reassured me that it was okay to make myself something… that I wasn’t being selfish.

This year, I would also like to get back into painting. I have several blank canvases that my sister gave me. They are just waiting for a wave of creativity to wash over me and spill onto them.

I have several other little craft projects I would like to do this year. I’m thinking about making gastroparesis and complex regional pain syndrome awareness bracelets. Just a little something I could hand out to family and friends to help raise awareness.

I’ll try to post photos occasionally of the things I make this year.

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

Day 6 of 30

January 7

Personal Prompt: Write a letter to your illness or condition.

Dear CRPS and Gastroparesis:

Challenge accepted!

CRPS / RSD Awareness  also   Crohns and Colitis Awareness♥ my son has Crohns disease, anyone ever wanna chat Im Misa Blessed Lopez-Coleman on facebookYou may feel like you’ve won a few battles, but with the help of my God, my family, my church friends, and my doctors, I’m going to win the war.

You may have robbed me of many nights of sleep, but I didn’t give up.  Even with your many symptoms leading to sleepless night and tiredness, I’ve pressed onward and upward reaching toward my goal.  Your tiring attributes may make life more challenging, but I’m ready to fight back.

You may feel like you’ve stacked the deck against me by bringing pain, swelling, nausea, vomiting, and dehydration, but I’m here to let you know that it is going to take more than that to tear me down.  These symptoms that you so love may slow me down, but they will not stop me from living life and loving it.

CRPSYou’ve taken my ability to walk, but I just see that as another challenge.  I know with God all things are possible and  I will walk again someday.  Whether it’s here, leaping for joy, or later strolling down streets of gold, I’m going to walk.  I also realize that without me and the many others putting up with you, you would not exist.  We may not need you, but you need us.  When we win this battle you lose everything.

Shout out to all of the grave chronic pain/illness warriors out there ❤❤ <a class="pintag" href="/explore/Inspiration/" title="#Inspiration explore Pinterest">#Inspiration</a> <a class="pintag searchlink" data-query="%23ChronicIllnessQuotes" data-type="hashtag" href="/search/?q=%23ChronicIllnessQuotes&rs=hashtag" rel="nofollow" title="#ChronicIllnessQuotes search Pinterest">#ChronicIllnessQuotes</a>If anything, you’ve shown me how strong I truly am.  You may have taken away my ability to eat and walk; you may have given me pain, nausea, and vomiting, but you also showed me that when life becomes difficult, there’s nothing that my God and I cannot overcome.  You’ve taken a lot from me, but I’ve learned so much about myself because of you.

You have inspired me.  I’m sure you are surprised to hear that, but because of you I’m reaching out and trying to help myself and others.  I hope you aren’t disappointed that I refuse to be defeated.

As I said… challenge accepted… I’m not giving up…the battle is on!

With lots of love and gentle hugs,

A CRPS and Gastroparesis Warrior

 

 

 

Note: These images came from Pinterest.  If you own an image and want it removed, leave me a message and I’ll remove it. If you own the image and are willing to allow me to continue to use it, send me a message and I’ll update this post to give you credit.

I chose not to do the creative prompt today.  It was writing a five sentence story using ten random words someone else gave you.  It was an easy prompt, I just chose not to do it. Felt relief for 3 days after getting a nerve block... I cried when I realized that I couldn't remember the last time I felt relief. Endometriosis and Poly cystic ovarian syndrome are no joke!

I just received an email with next weeks topics.  I hope you are enjoying my journey.  I know I am.  I think this journey is intended for Facebook, Twitter, and other social media, but I’m not on any of those, so I’ll just continue to use this blog.

 

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

Day 4 of 30

Cute TurtleWow, this is a whole lot harder than I thought it would be.  It’s day four of this thirty-day journaling challenge and I’m already wanting to quit.  I’m wanting to crawl back into my shell where I feel safe and protected from the world.  I’ve never done anything like this before and it’s scary.  I realize I don’t have to share my thoughts with the world, but something inside is telling me I need to.  This little voice is telling me that I need to help bring awareness to CRPS and gastroparesis… that the only way we can help change the world is by sharing our stories… our good days and our not so good days… our successes and failures… our lives.  Why do I feel like I have to hide my pain, my nausea, my nonstop vomiting. I can’t control any of it. I’ve not done anything to cause it. CRPS and gastroparesis are just as much a part of my life as breathing. I’ve kept it all hidden away for so long.  I convinced myself that people didn’t want to hear it, but now I’m sharing it and don’t really know why…and with strangers at that.  I don’t think I’ve gone crazy… have I?

Personal Prompt: Name five things you are proud of, and five things you are not so proud of.

Hmmm…this is a hard one.  I’ve always been taught that pride goes before a fall and we aren’t supposed to be proud.  However, I must start by saying I’m proud of my family.  I’m so thankful to be part of such an amazing family.  No matter what we face in life, we stick together and help one another.  I’m also thankful that my family taught me perseverance and courage.  I’m proud that despite what I have gone through I’ve not given up.  Although I’m not physically able to hold down a job because of CRPS and gastroparesis, I did manage to finish high school and college.  I’m also proud of my blog.  I’m thankful that I’ve started this journey and that I’m being open and honest with my writing.  It’s difficult to write my true feelings and put them out there for the whole world to read.  I’m proud of my fellow chronically ill bloggers for being willing to share their stories and be encouragement to others following the path they are on.  You all inspire me and make me want to try harder to be an inspiration a beacon of light for those following behind me.  I’m also proud of those in the medical field who are willing to think outside the box and try to find ways to make life better for those of us living with chronic illnesses.

There’s really only one thing I can think of that I’m really not proud of and I’ve shared that previously on my blog. I realize that I’m hiding behind a fake smile and saying I’m okay when I’m really not. Maybe that is what this thirty-day journaling is about. Maybe it’s about finding myself and accepting who I am. Maybe it’s about accepting my differences as okay… as something I don’t have to run and hide from. Maybe it’s about being me and allowing people to see more than that smile that I hide behind.  CRPS and gastroparesis has changed my life, but it’s still my life and I’m going to make the most of it.  With God on my side, there’s nothing I can’t do.  I’m proud to call Him my Father!

Creative Prompt: Plan your dream vacation. (Where are you going?  Who is coming?  what are you doing?)

Two TreesOkay, this is an easy one.  My dream vacation would have to be a camping trip.  I would take any of my family who would like to go.  We would hike through the forest and find the perfect camping spot.  Once we found the perfect a pot, we would set up our tents and put out luggage and bedding in them.  We would then gather wood and build a campfire.  We would sit around the fire and cook our food.  Then we would sing songs and tell stories until it got late.  Then we would climb in our tents and go to bed.  In the morning, we would cook breakfast over the campfire.  Then we would spend the day together exploring the great outdoors.  We would hike through the woods and swim in the nearby lake.  we would enjoy our time together as family unplugged from the world and all its chaos.  No phones, no internet…just us and nature.  I can almost hear the gurgling of the nearby creek…the birds tweeting…the wind blowing gently through the trees…how relaxing.

 

 

Graphics from: http://www.mycutegraphics.com/