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.

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