Posted in #CRPS, #Gastroparesis, #RSD, Chronic Illness, Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Courage, Faith, Gastroparesis, Happiness, Invisible Illnesses, Life Lessons, Strength, Thankfulness

True Freedom

Growing up in a Christian home, the person I have become has been heavily influenced by both my faith and my family. From the time I was a young child, I can always remember being told that I should always tell the truth…that Satan is the one who leads us to lie…and that one lie leads to another lie and eventually the lie gets so big that you get caught lying because you can’t remember all the lies you have previously told.

Due to my immune system not functioning well, I’ve not been able to attend church as much as I would like to due to illnesses. When you are home and sick in bed, you have a lot of time to think and I must admit I’ve done a lot of thinking about John chapter eight verse thirty-two and the truth.

John chapter 8 verse 32

First let me give a little background information to help put my story into perspective. A couple of weeks ago I was feeling okay-ish (if okay-ish is even a word), so I decided to go to church. With it being flu season and the flu outbreak reaching epidemic proportions I chose to decline all hand shakes and hugs. I must admit, it felt a little odd refusing to shake hands and hug people I have known all my life, but it was for my own good. I have been advised by medical personnel to not be out around groups of people unless absolutely necessary. After being home for a couple of weeks, it was absolutely necessary I break free from the walls of my house. Just being out with people was putting me at a higher risk of getting sick, I didn’t need to chance getting deathly ill because someone was sick and didn’t know it yet. So, I politely explained I have a weakened immune system and asked for no bodily contact. Thankfully everyone understood and cooperated with me. They all know how sick I have been the past few years and that my body isn’t fighting off illnesses right now. I hadn’t been to church in a few weeks, so although they couldn’t get hugs and handshakes, I think everyone in the building came by to say hello and find out how I was doing. It’s nice to know people care.

This is when things got a little interesting. Someone came by and asked how I was doing and I answered with a smile and my usual answer, “I’m okay.” Now I must admit this phrase coming out of my mouth could mean almost anything. Okay might mean that my pain is a two on the zero to ten pain scale and everything seems to be going good today or it might mean that I slept two hours last night in fifteen minute intervals, I’ve already vomited ten times this morning, my pain is an eight on the zero to ten scale, and it’s only eleven in the morning. Many of us with chronic health conditions have learned that sometimes it is easier to smile and say we are okay than to explain how we really feel. There’s a few people in my life that have realized this and they ask what “okay” means.

To be completely honest, I wasn’t really sure how I was doing physically that Sunday morning. I didn’t feel any worse than normal, but I had been staying really tired, most likely because my heart was beating a little too fast (which it is still doing). Although I had a gut feeling that my test results would be normal, I wouldn’t get the results from my echocardiogram and blood cultures for three more days. By the way, I was right. The test results were normal. We have no idea why my heart is beating fast part of the time.

So, I had just been asked how I was doing and answered that I was okay. This is when someone else spoke up and said, “You lied.” I must admit that comment caught me a little off guard at first. I don’t get called a liar very often. While I don’t really feel like I’m telling a lie by stating I’m okay even when my health says I’m not, it was time for the service to start so I quickly justified my answer by telling the other person I was sure he does the same thing. The other person also lives with chronic health issue, so I’m sure he understood my answer.

Over the past few weeks, I’ve thought a lot about truth verses lies. While I don’t think anyone involved in the previous conversation really thought I was lying, it made me stop and think about how many times we answer questions with what we consider to be an honest answer, but if the other person really knew how we felt they would call us a liar. Two people don’t always perceive things the same way.

For a long time, I did lie about how I felt. I bravely put on that fake smile and said I was “okay” even when deep inside I knew I wasn’t. Like others living with chronic illness, I felt like that was my only option. I somehow convinced myself that I was protecting others by keeping my struggles to myself. I thought I was keeping others from worrying about me. Only since starting this blog, have I really opened up and started telling people how I really feel. Some might see sharing your struggles as a sign of weakness, but I’ve realized it isn’t. Overall people seem pleased to find out how I am really doing. I have encountered a few people who didn’t really want the truth, but that’s their problem not mine. I’ve come to the conclusion that if you don’t really want to know something you shouldn’t ask.

You might be reading this and wondering where in the world I’m headed with this story. I’m getting there. I share this story to encourage others fighting health issues, whether it be physical or mental, to open up and share how you really feel.

Just today (okay I just realized it’s one in the morning so it was really yesterday) someone was asking me questions about my CRPS and whether I feel it’s better, worse, or about the same today as it was three years ago or twenty years ago. I told the person from my perspective it’s progressively getting worse. Then the person commented he couldn’t imagine what it’s like. I quickly stated, “Oh, you get used to it.” I immediately felt myself crawling back into my shell. The room went quiet and I heard a voice in my head screaming, “Liar!”

At this point, I had a choice to make, I could leave the conversation and let the physical therapist think CRPS and gastroparesis was something you just get used to, or I could stand up for myself and every other person living with chronic illnesses. The choice was mine. Was I going to be brave and share the truth, knowing that the only way to be honest was to share my struggles and reveal my weaknesses, or was I going to allow myself to continue to crawl back into my comfy shell where I felt safe?

Admitting my weaknesses isn’t easy. In a matter of milliseconds my thoughts went everywhere. I thought of everything I’ve been through with my health, the people I’ve met at doctors offices from around the world, and the pediatric pain warriors I met at camp. Deep inside I knew this was more than just a chance to stand up for myself, I was defending every person out there who feels like they have to hide their true feelings behind that fake smile to protect everyone else. At that point, there was no doubt in my mind. I knew what I had to do. After a short pause I said, “No, you don’t really get used to it. You just learn to adapt.” I then explained how it’s easier, twenty years later, as an adult, to deal with the pain and the unknown future than it was when I was fifteen. I explained how difficult it was a month before my sixteenth birthday to be diagnosed with a rare chronic pain disease for which I was told a cure wasn’t known.  This is the first time I have discussed with anyone outside my immediate family how difficult it was to watch my classmates get excited about getting driver’s permits while I just wanted to walk. I had written it for others to read on my blog, but never said it aloud. Don’t let anyone convince you that typing something for someone to read in another room is no different from saying it for someone sitting in front of you to hear. Typing and saying something are two totally different things.

No, you never get used to the pain and everything else that goes along with CRPS and gastroparesis, but you can adapt and learn to live with it.  Does accepting my current state of health mean I’ve given up? Absolutely NOT! Each new day brings something new. I’ve realized that tomorrow will be whatever it is. Whether day break brings healing or struggles, I know I’m ready for it.

Okay to admit your not okay

Yes, my health conditions do cause me to experience pain, fatigue, nausea, vomiting, etc., and make life a little more challenging and unpredictable at times. I’ve realized it’s okay to admit I’m not okay. I’m the only one who knows how I really feel and I don’t have to protect everyone else by hiding it. However, I have also realized my attitude, not a medical diagnosis, determines how I am doing.

So am I okay? Yes and no. It depends on what you are actually asking and from whose perspective you are looking at it. Sometimes my brain says I’m fine, while my body is screaming help me.

I'm Fine

There is one thing I’m sure of honesty is always the best policy. If can’t let down your guard and openly share how you feel for your own good, think about those who are following you. Let’s build bridges to make the way easier for those behind us. It’s amazing how good it feels to be able to honestly say, no my life isn’t perfect…no I won’t ever get used to living with chronic pain…no this isn’t the life I imagined I would be living…but I’m going to make host out of it anyway. Yes, the truth does set you free.

 

Note: All images came from pinterest. If you own an image and either want credits added or don’t want me to use it, please contact me.

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

Making the Invisible Visible

Since being diagnosed with Complex Regional Pain Syndrome (formerly known as Reflex Sympathetic Dystrophy) twenty-one years ago and even more recently being diagnosed with gastroparesis just a few years ago, I’ve always found it difficult to get people to understand that even though my body looks okay, inside it isn’t. Last year, I sketched a picture of what people would see if they saw what I feel. People…more specifically facial features and hands…are not my specialty. I prefer painting trees, mountains, and buildings. However, I moved outside my comfort zone for a couple of months and during December and January, I painted what I feel. Here my completed project.

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I must admit, after I finished the painting I was a little nervous about sharing it with others. I didn’t know how others would react. Would it help them understand or would they think I was crazy. I kept the painting hidden away for a few weeks, while I decided how to share it. One day, my six-year-old niece was visiting. I heard her in my room laughing and yelled to ask what was so funny. Her response was, “You don’t have a green face!” I rolled my wheelchair toward my room wondering what her next comment would be. I was expecting her to think it was scary. Instead she laughed and asked, “Why is your snot on fire?” She wanted to show the painting to her brother, but he’s 18 months younger than her and I still wasn’t convinced it was a child friendly painting. After my niece broke the ice by finding the painting I shared it online with my friends and family around the middle of January.

This week, my niece and nephew were visiting again. My aunt had been over earlier in the day and I had pulled the painting out to show her. My nephew was playing in my room. I forgot about the painting being out. It must be child friendly. He came through the house laughing. He said, “I love this picture of you puking. It’s so funny.” I was so worried about what people would think and I’ve only heard positive comments made about it.

I think most people living with complex regional pain syndrome understand the purple cold leg that feels like it has been set on fire and cut open. My hair isn’t on fire, I’m just not the greatest artist. My neck, face, shoulder, back, and arm have started burning like my leg. I’m pretty sure my CRPS is spreading. As for the fire coming from my mouth and nose and the green face…that would be my gastroparesis. Even with my gastric stimulator, I still vomit 6-8 times a day. That’s a big improvement, but the acid when I vomit sets my throat, mouth, and nose on fire.

So, while I might look normal most of the time, you can’t judge a book by its cover. Some illnesses are invisible. Just because someone looks healthy, it doesn’t mean they are.

Invisible no more!

 

 

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.

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

Quitters Never Win, Winners Never Quit

Growing up, I frequently heard people say, “Quitters never win and Winners never quit.” It has taken me several years to fully understand what that statement means. In life, we all face a series of challenges. We must choose to either stand up and face the challenge head-on or to turn and run. Often, we are tempted to throw in the towel or wave the white flag and surrender because we think the battle before us is too hard to fight. However, most of us end up choosing to stand and fight.  Especially when the challenges facing us are health issues.

When I was diagnosed with a rare chronic disease known as Reflex Sympathetic Dystrophy as a fifteen year old, I knew I had to fight. The doctors said there wasn’t a cure, but I was sure I would get better. I went to physical therapy and completed my home exercise routine to the best of my ability. However, I wasn’t seeing improvement and I kept getting kicked out of PT because my insurance wouldn’t pay. I’m not going to lie, it became discouraging.

Then came all the sickness. Daily vomiting, weight loss, and tiredness made it even more difficult to fight. Finally a diagnosis of gastroparesis was made. I was determined to do anything I could to be healthy and feel better. I changed my diet, saw a dietician, and had a gastric stimulator implanted.

I’ve had a pretty successful life. I graduated high school and college with honors. Despite my health conditions and illnesses I also managed to earn a master’s degree from college. Despite those moments where I felt so successful, I still sit here today in a wheelchair, eating baby food. I wish I could work and live what most people consider a “normal” life. However, CRPS/RSD and gastroparesis have taken a toll on my body. I don’t have the energy or strength necessary to work. Some days, I do good to get out of bed. However, there’s one thing CRPS/RSD and gastroparesis can’t take from me and that’s hope. I still wake up each morning and fight because that’s what warriors do. Each morning I hope for a better day and I do my best to make the most of the situation I am in. No, it’s not easy, but I realize that if I give up, I’ll never beat these monsters. So, I’m in this battle to win. I fight not only for me, but also for my fellow warriors and those who will later follow us on this path. So until I draw my last breath, I will continue to fight!

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

Humor on a bad day…

The  past couple of days have been rough with my complex regional pain syndrome and gastroparesis. I’ve been more nauseated. I’ve vomited more than common. I’ve been in lots of pain. I’m exhausted. I’m not looking for pity… just stating the facts. When faced with these not so good days… which I’m forced to deal with on a weekly basis, I have to make a choice… do I lay in bed and cry because I feel miserable or do I find something to do to keep my mind busy. I’m not ashamed to admit that there are days I cry because I don’t feel like doing anything else. Some days I just sleep because I don’t have the energy to do anything else. However, some days I don’t feel like getting out of bed so I spend the day in bed with my tablet searching for inspiration. It never fails that Pinterest has something I’ve never seen before that brings a smile to my face.

Living with gastroparesis, I’m constantly having to defend my choice not to eat when I’m at church dinners, family picnics, and other outings where food is the main attraction. I know that if I eat certain foods, that more than likely I’m going to vomit. Many times, people want to know why I am not eating. I explain gastroparesis in as simple terms as possible and with as little detail as possible. While people are eating isn’t the best time to explain that I vomit nonstop when I eat the wrong foods or wrong amounts. While they are eating isn’t the best time for me to eat and vomit either. That makes for an award situation. However, some people persist and want to know more. So, I’ve grown tired of making the situation seem less complicated than it is. For a long time I blew my gastroparesis off as no bog deal, even though I knew it was. Now, when people persist, I give the details. They don’t usually ask twice. 😀 So, I explain it’s not that I don’t want to eat. When I eat fatty foods, fresh fruits and vegetables, meats, and food high in fiber, I vomit. Then I usually get a look of pity, which I completely despise, and am asked, “So what do you eat?” I found this picture on Pinterest today and while it may be referring to a gluten-free diet, I feel it portrays my gastroparesis diet perfectly. I don’t know from one day to the next what I can eat. A food that may be safe today may make me sick tomorrow. That is how my life works and I’ve adapted. I carry a roll of trash bags at all times because I never know what the day is going to hold.

#Hashimoto's #Autoimmune_Disease — Living Naturally Autoimmune

This next sign really made me smile. I was diagnosed with complex regional pain syndrome when I was fifteen years old.  I started having issues with gastroparesis in my early twenties, but wasn’t diagnosed until I was in my thirties. Many times, I’ve been told I’m too young to have the problems I’m having. For those who have told me that… this sign is for you. Unfortunately chronic illness does not discriminate based on age.

At 41 the doctor said you have the neck of a 70 year old! True story. Chronic pain doesn't end. I'm 55 and still disabled.
For those of you out there that are also facing chronic illness this one’s for you. While many people don’t understand what we are going through, we have to stick together and
hang in there. On bad days we need to reach out to each other and help each other along. On good days, we need to educate the world and bring awareness to invisible, rare, and chronic illnesses.
Chronic Illness - ones that aren't known by everyone or at all.

 

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?