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.

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

CRPS/RSD Awareness

November 6 was Color the World Orange Day for CRPS/RSD Awareness all over the world and the month of November is CRPS/RSD Awareness Month. I saw my doctor that helps me manage my CRPS/RSD on November 6 and we talked about it being awareness day around the world. We also talked about me not being physically able to work right now because of CRPS/RSD and gastroparesis. He encouraged me while I’m not able to work to start a blog or something like that to share my story, inspire others, and connect me to the outside world. I told him I have a blog, but I hadn’t, posted anything on it in a while. (According to WordPress, it’s been two months since I’ve posted anything.) I explained to my doctor that I just hadn’t felt up to blogging. Over the past two months, I’ve been on antibiotics every other week. For some reason my immune system is down and my body isn’t fighting off anything. Since July, I’ve been treated for diverticulitis, a kidney stone, multiple urinary tract infections, shingles, mouth sores (yeast infection from antibiotics), and an ear infection that doesn’t want to go away.  That is in addition to my gastroparesis, CRPS/RSD, migraines, and polycystic ovaries, all which I have lived with for years. My doctor told me he thought I needed to blog. He asked me why wait. He said people don’t want to hear the story once you are all better. He told me I had so much to share and I needed to be sharing my story as I live it. He said that I could help others facing the same battles by sharing my story and showing them they aren’t alone. So, I am going to try to do a better job and update my blog a little more often, because he is right…I do need to share. Although I’m not sure how sharing my daily struggles is going to help anyone else, reading stories written by other warriors fighting chronic health conditions does help me.

247587748052202

So, what have I been doing for the past few months? Good question. Like I said, I’ve been sick from some kind of infection pretty much nonstop. I was advised to stay home because my immune system isn’t fighting. For the most part, that is what I’ve done. I’ve spent many days in bed feeling horrible. However, I had my tablet in bed with me and it was my door to the outside world. I watched as friends and family roamed the world. I saw adventures taking place as friends took their families on vacations and cruises and family traveled coast to coast. I continued to watch as officials around the world declared proclamations and agreed to light up bridges and buildings orange for CRPS/RSD Awareness. Most of the places I’ve seen pictures of are places I’ve never been because my health conditions limit my ability to travel.

I decided to try to help raise awareness, so I contacted my local officials and asked them to make proclamations (which they did), I started sharing awareness information, I colored my hair orange, I set up a booth at a local elementary school, and I got sick again. If you see me out and I don’t shake your hand or give you a hug, or if I do and immediately reach for the hand sanitizer, I’m not being rude. I’m just trying my best to stay as healthy as possible. If you don’t see me out at all, I’m either in the middle of a bad CRPS/RSD or gastroparesis flare and not physically capable of being out, sick with something else on top of my chronic health conditions, or trying to build my strength back up because of one of these two things. Life can be a struggle, but I refuse to give up. While I may not be feeling good today, I know better days lie ahead. Better days may be few and far apart right now, but the better days are what keep me going.

So for those of you following my blog who are battling your own health conditions, my advice is to take life one step at a time. Don’t look ahead at days, months, and years. Take time and enjoy the little moments in life. There’s nothing wrong with planning ahead, but don’t get down on yourself if you can’t follow through with your plans. I know that’s easier said than done, but we need to stop blaming ourselves for things beyond our control. Life has a way of pulling us down at times. Often we have to do a cost benefit analysis. Yes, going out and spreading awareness may have taken a big toll on my health and energy, but those children are our future doctors, nurses, and scientists. Sometimes the benefits outweigh the costs. Who knows, one of those students may find the cure. Until then, we’ll keep battling. We are warriors and together we are strong.

AwarenessThere may be specific dates set aside to raise awareness of our invisible and rare health conditions, but we are very aware of them every day.  I encourage each of you to continue to share your story with others. If you aren’t sharing your story, I encourage you to start sharing it. I must admit, this blog has probably done me more good than it has anyone else. We must continue to share because as my doctor said, there’s someone else out there that needs to know they aren’t fighting alone.

 

 

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 ...