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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Posted in Chronic Illness, Creativity, Family, Gastroparesis, Invisible Illnesses, My Life

Life Happens

I clicked on my blog and realized it has been a month since I last posted. My last story was a sad one, but the month since then has been even harder and sadder. With a close relative having a brain bleed and a good friend suddenly passing from this life, it has been a stressful few weeks. I’m surviving though and I’m thankful for my tight-knit family and friends. We’ve supported each other through it all. God brought us to it and He is going to see us through it.

I did have some fun this past month though. My niece and I made a birthday cake for her sixth birthday. We made a Candy Land cake. We got the idea from Cookies, Cupcakes, and Cardio. I thought it turned out cute and it was very easy to make. Thanks Cookies, Cupcakes, and Cardio for the great YouTube video. We baked a sheet cake, put a layer of butter cream frosting on it, and topped it with candies. We followed the YouTube video, but my niece wanted us to add the people from the game board (Grandma Nut, King Candy, Mr. Plum, Queen Frosting, etc.), so we copied, laminated, and attached them to popsicle sticks to put them on the cake. We also made edible gingerbread man playing pieces by molding airheads candy  using the actual plastic playing pieces from the game.  We pressed the airheads on the playing pieces, cut away the excess candy, and peeled it loose. We ended up having to stick toothpicks in the playing pieces to hold them up because the airheads drooped when they got hot. If I had found a way to mold them out of the Wilton candy melts, they would have held up better, but I was short on time and didn’t get that figured out.  Everyone loved the cake and my niece is already trying to pick out her birthday cake for May 2018. LOL

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Today I took some time for myself and did some browsing on Pinterest. Self-care is important and I enjoy browsing Pinterest for decorating ideas, inspirational quotes, etc. I can’t afford to buy a lot of things, but I can make a lot of cheap decorations for my house. I must admit that the following sign made me stop and chuckle. Those of you living with chronic invisible illnesses can probably appreciate it.  I hope no one takes the sign as me being rude or disrespectful. I promise I didn’t have any specific person in mind when I saw it. I don’t consider any of my friends stupid. I just saw it and found it funny because I often hear people talking about how good I look even though my big weight loss was caused by gastroparesis starving me. Being sick doesn’t necessarily make us look bad.

May anyone with a chronic illness get a good giggle out of this

 

I’ll try to post more in the upcoming days about what life has been like the past few months with CRPS and Gastroparesis.

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

Day 2

January 3

Personal prompt: Congratulations!  You just won an award!  Pick an award, and write an acceptance speech.

When I was born, rumor has it that I was given brains, but no veins.  Throughout the years I’ve won several awards for academic achievement, but none for which I was expected to write an acceptance speech.  However there’s one award I received in the past for which I would like to write an acceptance speech.

As a high school student, I had to have a lot of tests and procedures to diagnose and treat may  CRPS/ RSD.  Many of these tests and treatments required IV access for intravenous fluids and medicines.  As I already stated, rumor has it I was born with brains, but no veins.  My veins are small and hard to get an IV into.  With tiny veins that easily blow, they rarely get it on the first stick.  I’ve been stuck as many as ten times, just to get a single IV access.  One time, multiple doctor’s were sticking me at the same time because my IV needing to be started was causing them to run behind schedule.  It’s bad enough that lab technicians seem to dread me coming through the door.  Anytime I go in for a procedure, I usually come away with hands and arms covered in bandits and bruises.  I was stuck so many times for lab work and IVs, that one of my high school friends made me an award congratulating me for being a human pincushion.  It’s that award that I’m going to write an acceptance speech for.

pincushionLadies and gentleman, I would like to thank you for this prestigious award.  It is with great honor that I accept this award on behalf of the many people across the globe living with Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy, gastroparesis, and other diseases that make it difficult to get access to veins for lab work and IVs. Having lived with these two poorly understood and invisible illnesses for several years, I realize it is difficult for those working in the medical field to find our small and often dehydrated veins. As painful as it may be at times for both you and us, we know the blood work and IV access is needed, so we try to sit patiently as you take turns coming in to stick us.  We would like to thank those of you who know your limits and choose to let someone with more experience do the job.  We also wish to thank those who use the three strike and your out policy.  If you haven’t been successful at hitting a vein in three tries, you probably aren’t going to.  Again, I’m honored to be receiving this award. Thanks for choosing me to receive the “Human Pincushion” award.

Creative prompt: Describe your dream house.  (Where is it located?  Who lives there with you?  How is it decorated.)

First, I would like to mention that this question brings back lots of childhood memories.  As a child, I spent many hours rearranging furniture in Barbie’s house,  all while imagining how my house would look when I grew up.  Now that I’m an adult, I frequently rearrange my furniture. My nieces now enjoy watching “Barbie, Life in the Dream House” on Netflix.

My dream house would be located on a farm in an area where the temperature ranged from seventy to eighty degrees Fahrenheit  year round.  I would choose this location because cold and hot temperatures make my pain worse.  While changes in weather seem to affect my pain level, I would want their to be both sunny days and rainy days.  In order for the farm to be profitable, we would need both types of weather.

I would want the house to be big enough to accommodate my parents, siblings, in-laws, nieces, and nephews.  I would want the house to be broken up like apartments so that each family had their own living quarters.  However I would want a common area where everyone could gather to eat, play games, watch movies, etc.

I would want each person’s personal space to be decorated to match their individual style and interests.  My bedroom would be decorated in greens and blues with a rustic or outdoors theme.  I would have a craft area with shelves and bins to neatly organize and store all my painting, craft, and knitting supplies.

Since we are dreaming, this house would be fully equipped to stay fit and entertain visitors.  There would be a state of the art gym and an indoor heated pool.  There would be a home theater set up like a small movie theater. I would also have the kitchen staffed with a chef and cooks who were well-trained and prepared healthy meals that accommodated the digestive restrictions and allergies of everyone in the household.

This house would be fully handicapped accessible.  Every entrance to the  house would be accessible by wheelchair and all doors would be wide enough to accommodate wheelchairs of all sizes.  Each room would be big enough for the persons belongings and still have plenty of room to move around.  There would be multiple handicapped accessible restrooms.  You, my reader, may think I’m over doing it with All the rooms being handicapped accessible or you may think I’m nosy or selfish and want access to everyone’s room.  My reason for making everyone’s space accessible is because I realize diseases and accidents do not discriminate.  Anyone can be up walking and seeming perfectly healthy and the next minute be deathly ill and unable to get around.  I’ve had several family members have ramps built into their houses when they needed a way to get in because an accident or injury left them unable to climb steps.  Some of these relatives had to sleep in their living rooms because all their bedrooms are on the second floor of their house.  We don’t know what we are going to face in life, so my dream house would be prepared, just in case.

Posted in Christmas, Faith, Family, My Life

Christmas Memories

I remember as a child going to bed early on Christmas Eve.  We always waited until Christmas Day to open our gifts and somehow going to bed early was supposed to make Christmas arrive sooner.  I can remember the excitement of wondering what I would get each year.  Sometimes our gifts were store-bought, while other times we received things mom and dad had made special for us.  My three siblings and I would get up at two and three o’clock in the morning.  We would wake our parents up, talk about the birth of Jesus, and open gifts in the middle of the night.  We realized Christmas probably wasn’t the day Jesus was actually born, but we chose to celebrate His birth on that day.

Around six or seven mom would cook breakfast.  When I say breakfast, I’m not talking a small breakfast.  We had biscuits, gravy, eggs, hash browns, ham, bacon, sausage, apples, and homemade jams and jellies.  We would gather together around the family table, say a prayer of thanks, and enjoy time together as a family.

Tonight, it’s Christmas Eve.  I’m in no big hurry to go to bed.  As an adult, Christmas just doesn’t seem to have the excitement and magic it had when I was a child.  Instead of the big homemade breakfast I enjoyed as a child, I’ll be having a bottle of Ensure Clear for breakfast.  Then I’ll head off to church with my family.  After church I’ll probably come home and watch movies.  Now that two of my siblings are married and have families of their own, we don’t gather to celebrate the Christmas holiday until New Year’s Day.  Even then, I won’t be able to enjoy the meal because of my gastroparesis.

However, I refuse to let not eating and being in pain get me down.  There’s more to family than eating together.  Holidays have become commercialized and focused on gifts and food.  Everyone is so focused on gifts and food that they get stressed out and miss the important thing… family time together.  I think it’s time we stand up against the big box store commercialization of holidays and take our families back.  We won’t all be here forever and it’s important that we make time to visit…to talk and laugh.  We need to enjoy the little moments and not let them just pass us by.

This year, I may not be able to eat, but at least I get to be with my family.  Whether they decide to watch a movie, play a board game, sing Christmas carols, or something else, I’ll be there enjoying the time I have with my family.  Instead of focusing on what we get for a gift or what we are going to eat, let’s try to focus on love and not take our families for granted… not just this one day a year, but the whole year through.  Instead of worrying about who got what, let’s focus on making memories that will stay with us forever.