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.

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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.