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Day One – Let the blogging begin!

Today isn’t really day one of anything except this new blog I’ve decided to start.  I don’t know that anyone will ever read it, but at least it gives me an outlet to express myself…a way to share my story.  Maybe someone going through similar situations will find this blog and we can inspire each other.

 

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Warriors – We’re all in this together!

‘m going to get right to the point. I’m having difficulty right now dealing with everything that is going on. It isn’t any one particular thing, it is just life in general. Trying to live life with CRPS/RSD, gastroparesis, and the many other health challenges that accompany these two monsters is a bit overwhelming at times. I woke up last night crying in pain. I have a really high pain tolerance and don’t usually have enough pain to make me cry. I’ll give a few examples to help you understand. Several years ago, I had all four wisdom teeth surgically cut out at the same time. As the day of the surgery approached, lots of people warned me how painful the procedure and healing was going to be. Compared to CRPS/RSD, that was a piece of cake. Just this past year, I had a 3mm kidney stone. I honestly can’t say if I passed it or if it dissolved. I had pain, but never saw the stone. However, I was expecting much worse pain than what I had. I have seen lots of family members fight kidney stones and I did not suffer like they do. Mom thinks my perception of pain is different because I live with such a high pain level everyday. However, I think the stone just disappeared. I can’t convince myself that my kidney stone pain was as bad as what mom has had. As my last example, I was using a hammer a few weeks ago and hit my thumb. Yes, it was hurting, but not enough to stop me. I looked off from what I was doing for a second to answer a question someone asked me and when I looked back to finish hammering, I realized I had hit my thumb hard enough to split it open and blood was squirting out. Did I panic? No, I laughed and said, “That hurt, but I didn’t realize I’d hit it that hard.”

Now, I think it’s important that I mention a few things here. I’m not saying that surgical extraction of wisdom teeth, passing kidney stones, or splitting your thumb open with a hammer are not painful. I know all of these are very painful. I’m just saying for me, in comparison to complex regional pain syndrome, these pains were not that bad. I would also like to point out that just because I didn’t think it was bad, I still believe these are very painful experiences for other people. Pain is hard to explain, because no two people feel pain the same. While there are tests and machines to measure things like temperature and blood pressure, I don’t know of any gadgets to measure a persons pain level. That is why doctors ask us to rate our pain on a scale of zero to ten. There is not a way for the doctor to verify pain levels, so they have to base their decisions for treatment on our perception of how bad the pain is and how we are reacting to the pain. I personally hate the zero to ten scale because I don’t think it is an accurate measure of pain. A person’s pain level is very subjective. The way we perceive pain and the number we assign to our pain is based on how much pain we have faced in life. For someone who has never experienced pain, a small amount of pain is a big deal. Over the years, I’ve watched my perception of pain change. CRPS/RSD has made me back up and look at other causes of pain in a whole new way.

Now, back to the craziness I’m trying to cope with right now. I’m currently having similar things going on in my right arm as my right leg…pain, swelling, sensitivity to touch, and changes in temperature and color. My doctor has been having nerve conduction studies and others tests done to look for a cause for the issues I’m having in my neck, shoulder, arm, and hand. For a couple of years now, I’ve been battling pain and sensitivity in my right side neck, shoulder, arm, and hand. The doctor thought it was pinched nerves in my neck area. I agreed to try a nerve burning procedure (radio-frequency thermocoagulation). The first two times, it helped. After the last one, I started experiencing severe burning pain in my neck and shoulder. The doctor advised me not to have any more nerve burning procedures until we figured out what was going on. The nerve conduction studies were normal. This leaves me wondering if CRPS/RSD is now affecting my neck, shoulder, arm, and hand.

Thursday my right arm and hand turned a dark purple/gray color and started swelling more than common. I was also having pain from my elbow up to my picc line. I had been experiencing numbness, tingling, and a little swelling in that arm and hand for a couple weeks, but had been blowing it off as no big deal. I called one of the home health nurses and she advised me to go to ER to rule out a blood clot. The good news is they didn’t find any blood clots. The bad news is they couldn’t explain what is causing the pain, swelling, and discoloration. The ER doctor said it could be the blood vessel constricting around the picc line because it is a foreign object entering my body. He instructed me to keep an eye on it this week and follow up with my primary care. The ER doctor said the picc line might have to be taken out. Those of you who know me personally know that’s not an option. My body depends on that picc line for hydration right now. Without IV fluids I dry up like a prune and my skin starts taking on a corpse like color.

So, I sit her waiting for doctors to return phone calls. I’ve had several tests for other health issues that have come up. I’ve seen some of the results (the hospital patient portal allows me to see them), but I don’t know what they mean so I’m not ready to discuss those openly yet. It’s frustrating being in pain, not sleeping, and just waiting.

I share all of this not in search of pity, but in hopes of helping someone else. Too many people look at pain, crying, physical weakness, and the frustration, anger, and stress that often accompany illness as signs of psychological weakness. We’ve been taught anyone who shares these emotions is “wimpy”. I’m not going to lie, when I don’t feel good, I stay home. Some people have this idea that I’m always happy and full of smiles and that I’m not that sick because I “look too good” to be sick. I’ve portrayed this false perception by hiding my illness, pain, and suffering from the world. Honestly, I’m like everyone else. There are days I can’t smile. I cry behind closed doors and hidden by the darkness of night. Those of us living with chronic illnesses learn to hiding it because we don’t want the pity or judgment we get from others, but that’s probably not always the best thing to do. We are doing others an injustice by falsely portraying that life with chronic illness isn’t that bad.

I’m choosing to share this now, because I want all my chronic illness warrior friends to know they are not alone. Yes, I do cry sometimes. Yes, I get so frustrated and angry sometimes with trying to figure my body out that I just need to be left alone to scream. Anyone living with a chronic illness who says they never cry or become frustrated or angry is most likely telling lies out of fear that others will see these feelings as a sign of weakness, offer pity, or be judgmental. Crying…frustration…anger…stress…these are normal feelings. We all face these at times in life. These aren’t signs of weakness. They are a normal human reaction.

Last summer, I met some of the strongest people I’ve ever come into contact with. Those children living with pediatric pain conditions, and their amazing families, are the real reason I chose to share this. Children should not have to feel like they have to hide their feelings and emotions because others might see it as weakness. Somewhere along the way, humans decided that some emotions like happiness, excitement, and love are acceptable. However, emotions like sadness and frustration have been labeled as negative emotions and must be hidden away. Now, we wonder why mental health has become such a big issue. Yes, children need to be taught how to channel their stress, frustration, and anger in a positive way. However, we are doing them an injustice by hiding our own pain and sadness. These children need to know that they aren’t alone and what they feel is normal. They need to see and know that crying is okay.

We all need to work to change the perspective that things like pain and crying are not signs of weakness. Children aren’t born believing these are weakness. We all cry when we are born. Everything a child believes, the child has learned by watching and listening to adults. When we see someone suffering, we need to quit being judgmental and try to be supportive and look for a way to help the person. All to often, we automatically dismiss other people’s pain, crying, or talking about their health issues as being self serving because we “think” they are just seeking attention or looking for pity. It’s no wonder children are being bullied. Adults are teaching them it’s okay. Like I heard my Pappaw Conley say before he passed away, “Our actions speak much louder than our words.” I challenge each of us to take a stand and help make a difference. No one, no matter their age, should ever be shamed, made fun of, or bullied for health conditions beyond their control or human emotions like crying that are natural responses to stressful situations. If we want to fix the mental health issues our children are facing, we must change the way we as adults think, speak, and act. Children need to be taught empathy. All children, regardless of whether they have a chronic illness or not, want one thing…to be loved and accepted. If there was more love and support in this world, I truly believe there would be fewer crimes and unnecessary deaths.

I know what it is like to be bullied, ridiculed, and judged based on chronic health issues I have no control over. High school and college were challenging. Living life with rare chronic health conditions is not easy. I’m hoping by sharing my story I can help someone else be strong and stand up for themselves. We don’t have to make excuses, apologize, or be ashamed of things we can’t control. We don’t have to hide our pain and suffering. We know we are not seeking attention and what others think doesn’t really matter. I am choosing to try to make a difference. I hope that one day, people with chronic illness will not feel the need to hide who they really are because others don’t understand. By sharing, I hope I’m able to make the world a better place for someone else.

Posted in #CRPS, #Gastroparesis, #RSD, Courage, Faith, Family, Invisible Illnesses, Uncategorized

April Showers Bring May Flowers

Note: This was written the last week of April, but didn’t get posted until May.

I’ve always heard people make comments about March coming in like a lion and going out like a lamb and April showers bringing May flowers. As April draws to an end, I look back on a month full of storms, not showers. I’m not referring to the weather. Instead, I’m referring to my life and the journey I have taken this month.

April came in on a Sunday. April Fool’s Day and Easter both fell on the same day. Not feeling well, I didn’t make it to church services that Sunday. Monday morning, April 2, I woke up early. I was feeling a little better so, I decided to work on a pair of socks I was knitting as I followed along with a  knit a-long sponsored by Red Heart Yarn. I knitted the same round of stitches several times and had to take them out because I made a mistake. A little voice in my head was telling me to put the knitting away and go check on my parents. I continued knitting, but just kept making the same mistake. So I laid the knitting aside, got on my power mobility scooter, strapped my wheelchair on behind, and went over to my sister’s newly purchased house.

I knew my parents were in the basement pressure washing the walls and there was nothing I could do down there, but I thought maybe there was something I could do to help. Upon arrival, only seconds later because my sister had bought the house next door to us, I transferred back to my wheelchair, rolled up the ramp, and went inside. Mom came up the stairs to see if I was the person she was hearing upstairs. She was pretty sure she was hearing my wheelchair and my dog Pepper. She told me that Dad was a little dizzy, so they were taking a break. I really didn’t think much about Dad being dizzy because he has an inner ear disease that throws him off-balance. I asked if there was anything I could do to help out and she asked me to clean a few things on the ground level of the house. I had been there about 20 minutes when I noticed a dark area on the bedroom floor where a register had previously been used to heat the house using a coal furnace. I knew my sister was wanting to restore the hardwood floor, so I decided to see if the black stuff would come off. I set down to clean with a small hand-held steam cleaner. Little did I know what was going on around me.

My dog, Pepper, curled up  next to where I was sitting on the floor. He laid there for just a few seconds and then started acting strange. He began to run around inside the house. He was running in and out of the empty rooms barking a low bark like something was wrong. I thought I better check things out. As I used my arms to raise my body off the floor and get back into my wheelchair, I felt a little dizzy and began smelling gas fumes. Certain odors, such as gasoline, perfumes, and cologne make me dizzy and cause me to have migraines. I decided I better go home before the smell of cleaning supplies mingled with gasoline made me sick. I also realized that if I was smelling gas fumes upstairs, there were probably gas fumes downstairs. So, I rolled to the door that opens to a flight of steps leading down to the basement. I was planning to tell Mom I was going home and that they probably needed to get some fresh air.

I opened the door and the smell of gasoline was so strong it nearly took my breath. I yelled, “Mom.” I listened and did not get a response. I proceeded to yell “Mom” several more times. I still wasn’t getting an answer. I knew my parents were supposed to be downstairs and each time I didn’t get an answer, I became a bit more concerned. Finally I saw Dad appear at the bottom of the steps. I told him I was just letting them know I was going to go home because I couldn’t handle the gas fumes. At least that is what I had thought I was going to do.

Dad informed me that mom was sick and laying on the ground in the back yard just outside the basement door. I thought they had probably breathed too many gas fumes and needed to go rest and get fresh air. I rolled out to the driveway, transferred to my mobility scooter and started around the house to check on mom. Before I was far enough around the house to see them, I heard Mom ask Dad how long she had been “out there on the ground.” That concerned me. When I came around the back corner of the house, I quickly realized things were worse than I had anticipated. Mom and Dad were both feeling ill. There color wasn’t good, they were short of breath, and they weren’t making a lot of sense. I knew we had to get home and get fresh air. At this point, I was still thinking gasoline fumes mingled with Clorox had probably caused some kind of reaction and was setting up chemical pneumonia.

Mom stood up and began to stagger home. Dad said he had to get the pressure washer out of the basement so the gas fumes would clear out. I sat in the driveway on my power mobility scooter not sure if I should follow mom or stay with dad. I sat on the end of the driveway, so I could see mom walk home. I waited and dad never came back to the front of the house. In that moment, all I could think was, “Why isn’t he coming?” I rode my scooter back around the house and found Dad laying over a pile of concrete blocks vomiting up jet black gunk. I knew time was ticking and I had to get help. I didn’t have a phone without going home, but how was I going to take Dad with me. I’m in a wheelchair and can barely get myself up and down. While quickly playing it out in my head how to get Dad home, I also realized I didn’t even know how mom was. Thankfully Dad raised up, looked at me with white foam around his mouth, and said, “I’m sick.” He denies ever laying on the blocks and vomiting black, so he must have been unconscious when I first found him. Dad was alert and able to walk home, although I honestly don’t know how.

I left my wheelchair on my sister’s car port and drove my power mobility scooter home as Dad walked. We arrived to find Mom was in the bathroom vomiting jet black stuff as well. Mom had enough sense to know she needed medical attention, so she had called 911 on her cell phone. She had given them her information, but due to poor cell signal had lost the call and wasn’t able to answer when they called back. I was on the way to get the phone when mom yelled to say I needed to call 911 and get help. That was my plan anyway. Living with CRPS and gastroparesis, pain and weakness make it difficult for me to get around. In order to check on Mom, I was going to have to get off my mobility scooter and slide down the hall on my backside. I knew she was in the bathroom and sick. I also knew she wasn’t answering every time I yelled to check on her. At this point my adrenaline must have kicked into overdrive or I went into shock one. I was able to stay calm even though I thought I was watching my parents die.

I called 911 and my uncle, mom’s brother, answered the call. While I felt horrible having to tell him I needed an ambulance for his sister, it was a relief to hear a familiar voice. As I gave him the details and checked on mom and dad, I realized they were falling asleep and I couldn’t keep them awake. I’m no medical specialist, but I knew that was not a good sign. During this conversation, the words carbon monoxide poison came up. Yes, the situation was much more serious than I had realized. My uncle, from 911 dispatch, told me I needed to get my parents outside to fresh air. I’m a small disabled woman. I do good to get myself in and out of the wheelchair. They were both falling asleep and I knew I couldn’t move them. So, I did the next best thing I could think of. I opened every outside door so the outside air would circulate in.

911 now had all the info they needed and we hung up. I couldn’t stand the thought of sitting there, thinking my parents were dying, alone. I immediately called my aunt and with a shaky voice asked her to come quick because my parents had been poisoned. I didn’t realize I had been too. My uncle working at the police department called me back on the non emergency line and asked me to call my uncle who lives nearby to come to us. So I quickly had two other family members there with Mom, Dad, and me.

The ambulance arrived only minutes later and took Mom and Dad to the hospital. Family insisted I had to be checked also because I had been in the house 20-30 minutes myself. I said I would, but I needed to make some phone calls first. Priority number one was to let my sister know Mom and Dad had gotten carbon monoxide poisoned cleaning her basement. I needed her to hear the news from me before it came through the small town grapevine. Whoever said word gets around in a small town knew what they were saying. I knew she worked next door to the hospital and I wanted to call her before someone else informed her an ambulance had just arrived at ER with our parents. So, I called her. My next two calls were my other two siblings. They both work for the school system. School had been canceled that day, so they had planned on coming up that afternoon to work at my sister’s house. I didn’t want them to show up and wonder what had happened to all of us. My last call was to ask my aunt, a former veterinary assistant, if my dog needed any treatment. Yes, I was more concerned about my dog than I was myself. He’s my knight in shining armor. If he hadn’t alerted me that something was wrong, we wouldn’t have gotten out and got help as soon as we did. She said since he was running around acting fine he would be okay without any treatment. If she had said he needed treatment, I would have taken him with me to the hospital. Someone could have picked him up there and transported him to the vet.

Having made connection with my siblings and knowing my faithful unofficial service dog was okay, I agreed to go to ER. My wheelchair was still sitting at my sister’s house and my mobility scooter is difficult to load, so my uncle, who had come to check on us, went to get my wheelchair. I was surprised when I went to ER that the doctor came into triage and checked me out. He already knew the situation because he was also treating Mom and Dad.

To make a long story a little shorter, we all had carbon monoxide poison and had to spend six hours in ER wearing oxygen masks. Mom and Dad had moderate carbon monoxide poison and I had mild. Thankfully they were able to blow off the carbon monoxide with oxygen and we were released to go home that same evening.

Since that day, a lot of people have told me how thankful they are that I went to check on Mom and Dad that day and that I stayed calm and got the help we needed. The doctor says another ten minutes and Mom and Dad would not have been alive. I know there are a lot of non-believers in the world, but I truly believe that was God making me think I needed to go check on Mom and Dad. I’m so thankful I listened and still have my parents here with me.

As we continued through April, the storm continued. Mom and I had a flat on the interstate going 70 miles per hour. The tire might have been shredded and had to be replaced, but God was watching over us again. We didn’t wreck and no one was hurt. I also dropped a half-gallon bottle of juice, which landed on my foot and broke my toe. The month wrapped up with another trip to ER and news that I must have some tests done in May because something isn’t right with my colon.

So, I’ve also heard said when it rains it pours. The April storms have passed and I’m looking for calmer days in May.

Posted in #CRPS, Respect, Wheelchair

Respect

I’ve debated for weeks on how to approach the topic I’m writing about. I grew up being taught to treat others the way I want to be treated. However there are lots of people in the world who did not learn that lesson. I believe the people I’m writing about today know how to be respectful. They just haven’t thought about what they are doing.

If you saw an elderly person walking across the room on a walker, would you reach out and grab their walker? What if a teenage was walking by on crutches and wearing a knee, leg, or foot brace because of a recent sports injury or surgery, would you reach out and pull on their crutches? What if you saw a parent or grandparent pushing a stroller, would you grab the handle and demand they let you push it for them? Most people would answer no to all these questions. It would be considered rude to bother someone’s walker, cane, or crutches while they were trying to walk. If you took a stroller from someone, you would probably be charged with attempted kidnapping.

Having walked on crutches for over ten years, due to pain and weakness from Complex Regional Pain Syndrome, I must admit that everyone was pretty respectful. No one bothered my crutches while I was walking making it more difficult to get around. With the exception of one time, no one asked to pick me up and carry me to make life easier.

So that no one has to wonder about that one offer to carry me, it was classmates at college. We were on the fourth floor of the building we could smell smoke and the fire alarm was going off, so the elevator was out of service. My classmates offered to carry me so I didn’t have to go down three flights of steps on crutches.  While it was a nice offer, I felt safer on my crutches than someone’s back. No one gets left behind though. If the building had been on fire, we would have all been in danger because the professor and class took the three flights at the same speed I did to make sure I made it with them. Thankfully it was a science experiment causing smoke that set off the alarm, not an actual fire.

As I said, when I was on crutches people were generally pretty respectful. People  were quick to run ahead and open doors for me and hold elevators. Although I was pretty good at walking on crutches and could manage to carry a cup with liquids in it or a plate full of food without making a mess, people were always offering to help.

I’m not going to lie, the majority of the population is respectful when it comes to wheelchair users, but I’ve noticed there are a few things that really tick me off. I don’t think the people are trying to be rude, I think they just need to be educated. I’m not writing this to point fingers or hurt feelings, I’m trying to help my friends see the picture from a different perspective.

Unauthorized pushing.Now that I’ve been using a wheelchair for just over five years, people still want to help, but sometimes it’s like they can’t hear. When asked if I need help, some people listen when I say I am okay pushing it by myself. Others become demanding and tell me to give my arms break and let them push. While they are just trying to be nice, I find it a little rude. In my eyes, forcing someone to let you push their wheelchair is the equivalent of running up behind a person on crutches, sweeping them into your arms, and making them let you carry them. While the wheelchair pushing happens all the time, no one ever forced me to let them carry me.

So many ignorant people, so little time to run over their toes..My other problem is people who think playing pranks on a wheelchair user is fun. This gets on my nerves quicker than anything else. People (typically men) think it is funny to stick their toe out or hold on to the bar used when pushing a wheelchair, so when I try to roll  forward, I can’t go anywhere. I usually just ignore it until they stop or make a joke. What I’d really like to do is to hire my nieces and nephews to kick them in the shin really hard. A wheelchair is an alterative mode of getting from point A to point B, when you can’t walk. If my nieces or nephews were to kick someone in the shin, they would be in trouble for being rude, so I won’t ask them to. However, kicking someone in the shin cause pain and makes it difficult to walk. When people hold my wheelchair with their hand or toe, they are causing me to have more CRPS pain because they are putting unnecessary stress on my body making it difficult for me to move.

This brings me to my last point…wheelies. Seeing a person using a wheelchair isn’t permission to take them for wheelie rides. While some people in wheelchairs enjoy popping wheelies, you should always ask. When people come up behind me and pops a wheelie, my body tenses and my pain level soars sky-high.

People not understanding that it’s not just a chair, it’s *your* chair.

So the point I’m trying to make is this…a wheelchair user often thinks of their wheelchair as a part of their body or their private space. Please ask before volunteering to push, stop, or pop wheelies with the wheelchair. Then unclog your ears, listen for the person’s response, and respect their wishes. I’m not going to pay my nieces and nephews to kick you in the shins, so please keep your hands off my wheelchair. If I need your help, I will ask.

As for stupid comments people make about people in wheelchairs and inaccessible accessibility, each of those could fill an entire blog of their own. So, I’ll save them for another post.

 

Note: These images do not belong to me. I found them on Pinterest and borrowed them. If you own these images and do not want them used on my blog send me a message and I will remove them immediately.

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.

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 Uncategorized

Health, Wealth, and Happiness

As I begin a new year in my blogging journey, I feel a sense of happiness knowing that despite the many challenges I have faced over the past year, I have not given up. When faced with new health challenges, sometimes it is much easier to turn the other direction and run from your problems than it is to face them. However, if we want true happiness, we must face whatever comes our way and fight to make the most of any situation we find ourselves in.

Like if you love the 2nd F.E.A.R. meaning! #positivemindset #positivity #perspectives #motivational #inspirational #quotes #health #wealth #love #happiness #nofilter #follow

September 21, 2016 I began this blogging journey with no idea what to share and unsure if anyone even cared enough to read my story. Over the past sixteen months I’ve managed to share the story of what my life has been like thus far living with CRPS and gastroparesis. I’ve had my ups and downs. Sometimes I’ve blogged daily. Other times I’ve let weeks or months pass before writing something new. I’ve shared details about my life and written stories based on writing prompts from other groups. A few people have chosen to follow my blog. So e people have commented on my writing. Some of my stories have even been published on another site.  No matter what my story…my life…might look like to the outside world, it’s my life and I’ve enjoyed sharing it. Over the past sixteen months I’ve found my voice and purpose for life. If sharing my life story…my triumphs…my failures…helps just one person…it has been worth it. I don’t know if it’s helped anyone else, but it has helped me learn to cope with the everyday struggles I face.

As 2017 came to an end, I found myself thinking more of my health, wealth, and happiness than I ever had before. I wanted to give my nieces and nephews something nice for Christmas. According to worldly standards, I live in poverty, but I don’t see myself as poor. I knew I couldn’t afford anything expensive. However, I knew I could spend a few dollars on yarn and make each of them a gift as unique as they are. This year, I decided they were going to get socks. I had never knitted socks before, but I was up for the challenge. I passed the many hours I spent at home in bed knitting socks. I knitted in doctor’s office waiting rooms and even in the car. Knitting made my neck, shoulder, arm, and hand pain worse, but I was determined to make a pair of socks for everyone. At one point, I didn’t think I was physically going to hold up to finish the project I had started, but with lots of rest and patience I managed to knit socks for them all. They each received a one of a kind pair of socks and a bottle of hand sanitizer. I felt their gift had served two purposes. I stayed healthier by staying at home and knitting instead of being out amongst everyone with cold and flu germs. I gave them sanitizer because they have to go to school and be around other children who are sick. I’ve always heard that an ounce of prevention is worth more than a pound of cure. I’m hoping by helping them stay healthy, it will help me stay healthier, because they won’t be carrying the germs in to me.

 

In short, the past sixteen months of blogging has taught me that life is what I choose to make out of it. Happiness doesn’t come from health or wealth. Happiness comes from inside a person. Happiness comes from accepting life as it is and rising to face the challenges. To be truly happy one must learn to make the most of every minute of life he or she is granted. No matter where this journey leads me in 2018, I’m choosing happiness. Wealth and health mean nothing if one isn’t happy and content in life.

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.