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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.

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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.

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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.

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GP Awareness Month

As you have probably already figured out from yesterday’s post, August is Gastroparesis (GP) Awareness Month.  Well, actually August is Digestive Tract Paralysis Awareness Month, which includes several gastrointestinal disorders, gastroparesis just happens to be the one I have. I hadn’t really thought about it at the time I submitted my latest story for The Mighty, but it’s pretty convenient that I posted a story in reference to the July hydration challenge and how difficult it is to stay hydrated with gastroparesis and it was published on their website during gastroparesis month. Check out my story Managing Dehydration with Gastroparesis at The Mighty.

GP Super Power

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Understanding

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

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

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

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

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

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

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

 

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

 

 

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

Patient’s Patience

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

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

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

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

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

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

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

Posted in Uncategorized

Making Memories

For me, March 2 is a day already filled with memories. Today is my Dad’s birthday. I’m thankful that I was blessed with good parents, who care about me. I could write a book on the things we did together as a family when I was a child. We enjoyed time spent together around the family dinner table each night and hours together camping, hiking, and cooking over an open fire. We built snowmen, went sledding, made snow angels, and had snowball fights. We fished and went swimming. There were only five years between my brothers age and my youngest sisters age. Being so close in age made it easy for us to do things as a family and we built strong bonds along the way.

Five years ago, March 2, brought a major change to everyone in our town. An EF3 tornado came through, leaving a big mess behind. The people of our community didn’t just sit down and give up. We worked together to clean up, heal, and rebuild. Our town still has scars from that night, but we are still moving forward. I feel like it’s our duty to honor the lives lost in that storm by moving forward and refusing to give up.

Today, I decided to make a few new memories. March 2 is celebrated in many schools across the country because of Dr. Seuss’ birthday. I visited the school where my niece and nephew attend and read the book, “Oh, the Places You’ll Go!” to both of their classes. I rested all week so that I would feel like going today. The trip may have worn me out, but it felt good to be able to do something nice for someone else. So many people do things to try to cheer me up and make my day a little brighter. The smiles on the children’s faces made my tiredness worth it.

For me, every day of life I’m given is a time for making memories. I’m learning to take time to stop and enjoy the small things in life. I think my chronic illnesses are teaching me not to take things for granted because we don’t know what tomorrow holds. We can’t change the past and we don’t know what the future holds, but we can enjoy the present.

Posted in Uncategorized

Rare Disease Day

#Myositis is a rare disease, therefore we celebrate Rare Disease Day! Get involved with MSU and Rare Disease Day. For now, you can help by changing your profile pictures on FB and Twitter. Learn how. #rarediseaseday:

The last day in February is designated in many places as “Rare Disease Day.” It’s a day to raise awareness with the general public and law makers of the many rare diseases and the struggles those living with these diseases face on a daily basis. If you or someone you know is living with a rare disease, I encourage you to speak up and help raise awareness in your community. I also encourage you to contact lawmakers and encourage funding for rare disease research. Those of us with rare diseases deserve the same care as those living with common illnesses. We must stand up for ourselves. We must continue to share our stories and encourage others to do the same.

Become a Rare Disease Advocate!:

Living with Complex Regional Pain Syndrome and Gastroparesis, I’ve gotten used to the question, “What’s that?” When I get asked that question, I take time to explain because the only way we are going to bring awareness is by sharing our stories with others.

There are approximately 7000 different types of rare diseases and disorders, 30 million people in the US are affected, approximately 10% of the US population.:

A disease is considered rare in the United States if it affects fewer than 200,000 people. However, if all people with rare diseases are grouped together, we wouldn’t be considered rare. Roughly one out of every ten people, ten percent, has been diagnosed with a rare disease. For more information about Complex Regional Pain Syndrome and other rare diseases, you can visit the National Institute of Health’s rare disease page here.

Rare Disease Day: Now I'm Rare poster

Images from Pinterest.

Posted in Uncategorized

Impossible

Living with chronic illness, I’m always looking for inspirational sayings… things to hang on my wall to keep me motivated and moving forward, even when I don’t feel like getting out of bed, which seems more often with each passing year. Today I came across a piece of wall art that simply stated, “Nothing is impossible. The word itself says I’m possible.” I’m not sure where this quote came from, but I have to get that print or make my own.

Living with multiple chronic illnesses, life isn’t always easy. As I’ve mentioned before, some days it’s easier to just stay in bed. However difficult things might get, I now find myself being reminded that “nothing is impossible.” It may take me longer to do certain things than it does other people and I may break simple tasks down into even smaller tasks to make them more manageable for me, but I still believe I can do anything I set my mind to.

For example, a normal person may throw their laundry in to wash. As soon as it gets washed, they put that load in the dryer and throw another one in the washer. When the dryer buzzes, they put the dry clothes away. For me, laundry is an all week event, and that’s for just one load. I wash the laundry and try to dry it the same day. I don’t like to let the clothes be wet too long because they can get a sour smell and begin to mildew. Just these two small tasks wear me out. So, the clothes usually go in a basket or are hung over something and left there for a few days. Eventually, I begin putting things away. One day I’ll work on folding clothes that go in my dresser. On another day I’ll hang up the clothes that go in the closet. Some weeks, I just don’t have any energy and I end up wearing the clothes from the pile without ever putting them away. As I lay here typing this post, there is a laundry basket in the living room with clothes in it. The basket has been sitting there for weeks and I really don’t know what is in it. It will eventually get emptied and things put away… just not today.

So, when you are tempted to look at a task and declare it impossible, step back, take a deep breath, and hear the task say, “I’m possible.” I may no longer be able to do things the way I once did, but I know that all things are possible.  I may not be able to walk or eat right now, but that doesn’t mean I’ll always be like this. I haven’t given up because I know all things are possible.

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

Valentine’s Day – I Love Dum Dums!

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

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

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