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 Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Faith, Gastroparesis, Invisible Illnesses, Life Lessons, My Life, Normalcy, Physically Disabled, Rare Diseases

I’M NOT BROKEN!

Some days, all I want to do is scream out for the whole world to hear, “I’m not broken and I don’t need you to fix me!” I’ve looked my wheelchair over from top to bottom and I’ve checked myself from head to toe for signs indicating or requesting that every person who sees me out of my house stop me and act like it’s their personal mission to heal me. Before I go on, I would like to say, I don’t have a problem with prayer. I’m a Christian and I believe in the power of prayer. However I’m sick of people preying on the disabled.

I was at Kroger the other day, minding my own business, trying to quickly pick up some low-fat, low-fiber, protein packed food. The foods I rely on for protein are not available for purchase anywhere in my small town. I have to travel at least 45 minutes to the nearest Kroger or Wal-Mart, just to buy tofu. I asked about tofu one day at a local grocery store and had to explain what it as because the store employees didn’t even know what it was.

So, I was at Kroger. I’d just passed through the fresh produce section and entered the area where the soy products, such as tofu, were located. An older looking gentleman stopped me and asked a simple question, “What are you doing in that?” He was referring to my wheelchair. I wanted to scream, but I was taught as a child to respect my elders and to be kind to everyone. I thought to myself, “Isn’t is obvious?” Given he was a complete stranger, he received the short sweet version…I have complex regional pain syndrome and it causes pain and weakness in my leg. The man went on to tell me he had a back surgery and it had saved his life. Then he went on to tell me everything I needed to do to get better. The only part of his plan that stuck with me was “massage.” Just the thought of someone touching my leg makes me hurt. I thanked him for his advice, although I don’t really think I was thankful, and went on shopping, thinking I’d probably never see this man again. I was wrong. During that very same shopping trip, every time he passed the aisle I was shopping in he stopped to talk. Although I know it’s a rude behavior, I’ve become pretty good at ignoring people like that. When I pretended to be so interested in rice noodles that I didn’t hear him, he started talking to my mom. He asked her if she was with me. At one point, he passed the end of the aisle I was shopping also in and commented, “She’s not been healed yet.” I suppose he was expecting a Kroger miracle.

On the way home, mom and I discussed what had happened to us at Kroger. I kept asking, why do people ask “What a person is doing in a wheelchair?” To me, it’s obvious that the person has mobility issues and is using the wheelchair to get from point A to point B. For some reason, although wheelchairs, walkers, and canes come in all different sizes, people think they are daily living aids for old people, not the young. I jokingly told mom that I should have told that man I was just sitting in that wheelchair because I thought wheelchairs were sexy and I wanted to see how many creepy old men I could attract. Of course I’ll probably never really say that in public, because I would be too embarrassed, but come on, what did he think I was using a wheelchair for. They aren’t cheap and you don’t just choose to use one because it’s the latest fashion statement. Maybe I was using that wheelchair to try to get a suntan inside the Kroger store or to walk my invisible dog or to imagine I was deep in the ocean in a submarine. I’ve always heard there’s no such thing as a stupid question, but sometimes I feel like giving sarcastically stupid answers.

Like I said, I am a Christian. I do believe God has healing powers, but I don’t believe in picking out only the obviously disabled to pray for or prey on. If you see me in the store and want to pray for me, go for it. No one is going to stop you. You don’t have to know my name or what’s wrong with me in order to pray.  When you pray for that girl in the wheelchair, God is all-knowing and He is going to know who you are praying for. God wants us to pray for the sick and injured, but He also wants us to pray for the healthy. If your going to pray for me, I ask that you also pray for yourself and every other shopper in the store. Everyone needs prayer.

I haven’t yelled at any one yet, but I can’t make any promises not to yell in the future. When you see someone in a wheelchair, please accept that we are just like you. We have feelings just like you. We came to the store to shop, just like you. Just because we are rolling around on wheels instead of walking on two legs doesn’t really make us any different. Many of us have been in a wheelchair for years and we are tired of the million and one people who are always offering advice on what we should be doing different. I realize you may think you are helping by offering the solution that worked for your dear aunt’s coworker’s bother’s friend or by praying for healing, but drawing attention to every disabled person you meet in life is just that, drawing attention to our differences. Our bodies may work or look a little different from the majority of the population, but deep inside we are just the same as everyone else. We are trying to live our lives to the fullest. Our physical appearance and abilities may be different, but we wish to be treated with dignity and respect the same as anyone else. If you aren’t going to stop everyone that looks healthy and able-bodied, why stop me?

 

Posted in Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Gastroparesis, Invisible Illnesses, Life Lessons, Rare Diseases

Just Chillin’

For those of us living with chronic health issues, life can get a bit overwhelming at times. Doctor appointments, treatments, etc. can be stressful for anyone, but when you figure in the uncertainty of chronic illnesses, things can get out of control pretty quickly. We quickly learn to look for ways to make life a little easier. I don’t know about anyone else, but I’m willing to try anything if there’s a possibility it might help.

With my Complex Regional Pain Syndrome, pain medications didn’t control the pain. They just made me sleep 18-20 hours a day. When I was awake, I was tired and didn’t function well. I basically didn’t even know I was alive. I just knew I was in pain. I didn’t like the way the meds made me feel, so I refused to take them. I told my doctors we needed to find another form of treatment. Like most people with complex chronic illnesses, I’ve tried many things. I’ve researched CRPS and read books on how our bodies process pain. I’ve done relaxation, psychology visits, physical therapy, graded motor imagery, mirror box therapy, injections, blocks, etc. The list of things I’ve tried seems endless. As I’ve mentioned before, my doctor implanted a nuerostimulator in 2004 to help block pain signals. I think everyone living with CRPS would agree that it’s very painful. I wouldn’t wish it on anyone. The nuerostimulator helps make the pain more tolerable, but I still cannot walk due to pain and weakness. It’s not a fix, but I’ll accept every little bit of improvement I can get.

Gastroparesis has been just as challenging. My doctor diagnosed me with idiopathic gastroparesis. Idiopathic means they don’t know what caused it. I imagine that diagnosis must be just as frustrating for the doctor as it is for the patient. It’s very difficult to fix something, when you don’t know what needs to be fixed. They do know that my gastric emptying scan shows that my stomach isn’t emptying my food into my small intestines. They also know that a biopsy of my stomach wall shows a lower than average number of nerve cells. However, they don’t know what is causing those two things. We tried medicine and that didn’t help. The trial gastric neurostimulator raised my stomach’s ability to empty from 30 percent to around seventy percent, so I agreed to have a permanent nuerostimulator implanted. Again, this nuerostimulator isn’t a fix either, but it is an improvement. I’ve also had to make some major changes to my diet. They say fat and fiber slow down digestion and since my stomach is already too slow, they have encouraged me to stay away from fatty and high-fiber foods. It has taken some adjusting to learn how to make tofu and other vegetarian protein packed meat substitutes taste good, but it’s better than being sick all the time.

Somewhere along the way, I started hearing about restorative yoga, essential oils, and aroma therapy. I live in a small town where these alternative treatments are not readily available, so I did some internet research. I thought I might find a restorative yoga class online that I could do at home while watching a video. I’ve still not found a restorative yoga video that fits my specific needs, but I did find some yoga positions that help ease Product Detailssome of my pain. I also found something on Amazon called Pinga, which is advertised as a 30-day pain relief program for treating and defeating complex regional pain syndrome. The entire program costs less than ten dollars and claims that it may free a person of chronic pain in as little as thirty days. I must admit, I was pretty skeptical, but it sounded simple and I was willing to give it a try. The book comes in paperback and digital format. The digital book was cheaper and allowed me to start reading instantly, so I downloaded the book from Amazon here. While the book contains scripts of the four recordings (introduction, session one, session two, session three), I felt I would benefit from having the MP3 recordings to guide me. The digital book cost almost six dollars and each of the four recordings was less than a dollar each. So, you are probably wondering  “What is Pinga and how does it work?” The book basically explains that you must do any of the three sessions, three times a day. You can do each of the three sessions one time each day, one session three times each day, or any combination of the three. The book explains that the most important part is to make sure you do three session each day for at least thirty days. Each session lasts from ten to fifteen minutes, so it doesn’t take a lot of time. In each session, a gentle relaxing voice leads you through focused breathing, relaxation techniques, and guided thinking/imagery.

 

As skeptical as I was, I wanted to complete the program and see if it worked. If you are still reading this post, I’m sure you are wondering, “Did it work?” My answer would have to be yes and no. I know that doesn’t seem like a fair answer, but it’s the one I have to give. After thirty days, I’m not pain-free. The program didn’t heal me. However, I’ve continued to use it periodically since purchasing it in 2014 and I’ve discovered that on days that I’m having more severe flare-ups, I can turn on a session of Pinga and relax. It doesn’t make my pain go away, but it does help me relax, which relieves the tension the pain is causing in my body and helps ease the pain a little. On nights when I am having trouble sleeping because of my complex regional pain syndrome and/or gastroparesis, I find myself turning a session of Pinga pain relief on, putting it on repeat, and letting it play all night long.

Will Pinga help everyone relax and rest better? Absolutely not. The guided imagery requires a person to be able to turn loose of their mind and let their imagination take them wherever the session leads it.  Just like everyone doesn’t get the same relief from medications and other treatments, meditation and guided imagery doesn’t work for everyone either. Like I said, it didn’t defeat my CRPS. Some days it doesn’t help at all, but on the days it does help, it’s worth it.

I share all of these things that I’ve tried as a way to encourage others not to give up. We get our hopes up, thinking a treatment might work and then if the treatments fails, we feel defeated. Every treatment option doesn’t work for every person. Our bodies are all unique and what works for me might not work for you. I encourage you to do your homework. Regardless of what chronic illness you might be fighting against, research the available treatments and don’t be afraid to try even the most simple things. No matter how silly something might seem, you won’t know if it works for you until you’ve tried it. A person can only fail, if he/she fails to try. Stand tall, hold your head high, and show your illness that you are a warrior and you aren’t giving up or backing down.

Posted in #MyMightyMonth, Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Invisible Illnesses

Freaky Friday Must Haves

Personal Prompt: Freaky Friday! In some weird twist of events, you get the opportunity to trade places with someone for a day.  Who would you trade places with and why?

Wow, Friday the thirteenth… Freaky Friday?  On this day that everyone else fears, I think of my grandmother.  She’s eighty-three years old and considers thirteen… drum roll please… she considers thirteen a lucky number.  She’s the wonderful mother of thirteen children.  She’s never believed the superstition many believe about the number thirteen.

However, it would definitely be freaky if I could trade lives with someone else.  I can’t imagine how freaky it would be for the other person to have the pain of CRPS or the nausea and vomiting of gastroparesis. It would be difficult for me to pick someone to trade places with because I wouldn’t wish this on anyone.

Okay, at this very moment I feel like the cartoon character with the devil sitting on one shoulder and an angel on the other one.  The devil is saying, “Just think how great it would be to give your illnesses away for a day. Have you forgotten that psychologist who said it was all in your head? Wouldn’t you like to give him a little taste of what you live with daily?” Then my goodness comes out and the little angel on the other side says, “Oh, but that was fifteen or twenty years ago, you’ve moved on and found doctors who believe in you. Besides he is an old man now and you wouldn’t really want him to suffer that way.”  Have I convinced you yet that I’m crazy?  I don’t really see people on my shoulder, I just have these conversations in my head. Somehow I always end up doing what’s right. You would think that little devil would quit talking, but he’s not one to give up.  I guess he can keep talking, but I’m not listening.

Creative Prompt: You developed the new must have item of the year. Describe what the item is and how you would advertise it.

Wow, the must have item of the year… that’s a tough one.  Some people would want health, some would want beauty, and some would want wealth. Me, I would just like a long-handled pick.  You know one of those comb like things you use to fix your hair.  Having had several surgeries where I couldn’t raise my arms above my head for six weeks has made for some interesting hairstyles. I have naturally curly hair and it’s a naturally curly mess when I wake up in the mornings. I could brush it without raising my arms up, but brushing my curls just causes frizz.  I developed a way to pick my hair by attaching my hair pick to a ruler, like children use to measure things at school.  I used rubber bands to attach it, but they are stretchy and that didn’t work so well. So I would like to design hair styling tools with long plastic handles to accommodate people who cannot raise their arms up. It may not be the item of the year everyone wants, but I’m sure there are other people out there that would think this was a great product.

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

Day 6 of 30

January 7

Personal Prompt: Write a letter to your illness or condition.

Dear CRPS and Gastroparesis:

Challenge accepted!

CRPS / RSD Awareness  also   Crohns and Colitis Awareness♥ my son has Crohns disease, anyone ever wanna chat Im Misa Blessed Lopez-Coleman on facebookYou may feel like you’ve won a few battles, but with the help of my God, my family, my church friends, and my doctors, I’m going to win the war.

You may have robbed me of many nights of sleep, but I didn’t give up.  Even with your many symptoms leading to sleepless night and tiredness, I’ve pressed onward and upward reaching toward my goal.  Your tiring attributes may make life more challenging, but I’m ready to fight back.

You may feel like you’ve stacked the deck against me by bringing pain, swelling, nausea, vomiting, and dehydration, but I’m here to let you know that it is going to take more than that to tear me down.  These symptoms that you so love may slow me down, but they will not stop me from living life and loving it.

CRPSYou’ve taken my ability to walk, but I just see that as another challenge.  I know with God all things are possible and  I will walk again someday.  Whether it’s here, leaping for joy, or later strolling down streets of gold, I’m going to walk.  I also realize that without me and the many others putting up with you, you would not exist.  We may not need you, but you need us.  When we win this battle you lose everything.

Shout out to all of the grave chronic pain/illness warriors out there ❤❤ <a class="pintag" href="/explore/Inspiration/" title="#Inspiration explore Pinterest">#Inspiration</a> <a class="pintag searchlink" data-query="%23ChronicIllnessQuotes" data-type="hashtag" href="/search/?q=%23ChronicIllnessQuotes&rs=hashtag" rel="nofollow" title="#ChronicIllnessQuotes search Pinterest">#ChronicIllnessQuotes</a>If anything, you’ve shown me how strong I truly am.  You may have taken away my ability to eat and walk; you may have given me pain, nausea, and vomiting, but you also showed me that when life becomes difficult, there’s nothing that my God and I cannot overcome.  You’ve taken a lot from me, but I’ve learned so much about myself because of you.

You have inspired me.  I’m sure you are surprised to hear that, but because of you I’m reaching out and trying to help myself and others.  I hope you aren’t disappointed that I refuse to be defeated.

As I said… challenge accepted… I’m not giving up…the battle is on!

With lots of love and gentle hugs,

A CRPS and Gastroparesis Warrior

 

 

 

Note: These images came from Pinterest.  If you own an image and want it removed, leave me a message and I’ll remove it. If you own the image and are willing to allow me to continue to use it, send me a message and I’ll update this post to give you credit.

I chose not to do the creative prompt today.  It was writing a five sentence story using ten random words someone else gave you.  It was an easy prompt, I just chose not to do it. Felt relief for 3 days after getting a nerve block... I cried when I realized that I couldn't remember the last time I felt relief. Endometriosis and Poly cystic ovarian syndrome are no joke!

I just received an email with next weeks topics.  I hope you are enjoying my journey.  I know I am.  I think this journey is intended for Facebook, Twitter, and other social media, but I’m not on any of those, so I’ll just continue to use this blog.

 

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 #MyMightyMonth, Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Creativity, Gastroparesis, Invisible Illnesses, My Life

30 Day Journaling Challenge – Day 1

January 2 – The Mighty’s My Mighty Month 30 Day Journaling Challenge  is intended to promote self-care. Each day I’m provided with a personal prompt and a creative prompt.  Some days I may not feel like doing either, some days I may do one and not the other, and some days I may do both.  Sometimes I may write about something unrelated to the prompts.  It all depends on what is going on in my life and how I feel.

Personal prompt:  What are some things you want to improve in the new year?

ensureThere are two major things I hope to improve in 2017, my mobility and my motility.  Right now, my complex regional pain syndrome is keeping me from being able to walk and my gastroparesis is keeping me from being able to eat.  My main source of nutrition right now is Ensure Clear.  I’m currently waiting for insurance approval for a lead wire revision on my gastric stimulator.  After that procedure, they will turn the stimulator back on and try to program it to where it makes my stomach empty better.  Once my stomach is emptying netter I will be able to tolerate more food and have more energy.  Then I will be able to return to doing physical therapy and hopefully gain back enough strength in my legs to walk with crutches or a walker.

Creative prompt:  Come up with the pitch for a television show. (What’s it about?  Who stars in it?  Where does it take place?)

If I were to make a movie, I would want it to bring awareness to the challenges people with chronic and invisible diseases face on a daily basis.  In order for the movie to be more realistic and believable, I would want the stars to be people who actually have the diseases and their family and friends.  I imagine a reality show where the camera person follows people with chronic illnesses as they go about their daily lives.  Obviously the show would take place wherever the person lived and traveled.

Living with a chronic or invisible disease changes not only the way a person feels, but also how they go about doing things.  I would want the show to be open and honest so that those watching the show realize the effect these diseases have on us physically, mentally, and emotionally.  Filming would have to take place moths ahead of schedule to make the show more interesting.  I wouldn’t expect anyone to watch thirty to forty-five minutes of days that we don’t feel like getting out of bed.

This gives me an idea.  Over the next few months, I may start making short videos and posting them to YouTube.  If I do, you my reader’s will be the first to know, so stay tuned!

Posted in #MyMightyMonth, Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Gastroparesis, Invisible Illnesses, Knitting and Crafting, New Doctors

Out with the old…in with the new

January 1, 2017…today is the start of a new year.  As I start a new year, I look forward to whatever life has in store for me.  At the same time, I find myself reflecting on the up and down times I lived through last year.

2016 was a bitter-sweet year.  While my health situation was quite challenging, I managed to accomplish several things last year. If I had a bucket list, which I don’t, I imagine these would be some of the thongs I would list on it.  Around September, I started this blog to share my story with the world.  I needed an outlet where I could use my life, my story, to not only bring me peace, but to help add inspire others as well.  Just putting my story in words and posting it has given me a sense of freedom.  It’s seems as though putting my story in words is helping me deal with the daily challenges of living life with CRPS and gastroparesis.  I still haven’t shared the fact that I’m blogging with others, but I do have two followers and several likes.  Not only did I start this blog, I chose to submit one of my posts to “The Mighty.”. The Mighty is a community where real people facing the challenges of living life with serious health conditions share their experiences.  My story “The Moment of ‘Normalcy’ I Craved as a Student With a Disability”  was accepted and published on their website December 28, 2016.  As I move into the new year, I hope to continue to share my story and hope to be able to inspire others to do the same.  By sharing our stories, we can encourage each other and raise awareness of the health conditions we live with.  As I start the new year, I hope to be able to blog on a more regular schedule.  I don’t know if my health will allow daily posts, but I’m going to attempt the Mighty’s 30 Day Journaling Challenge.

As 2016 cam to an end, I did something I had been wanting to do for a long time.  Due to the pain, weakness, and lack of energy associated with CRPS and gastroparesis, I spend a large part of my day in bed.  When my carpal tunnel isn’t flared up too bad, I enjoy knitting.  I mostly knit hats because they are quick and easy.  My nieces and nephews all have hand-knitted hats from their crafty aunt.  Over the past few years, I’ve been knitting hats and dropping them in a bag.  I given several away as gifts, but my bag was running over.  I washed the hats, placed each one in its own Ziploc bag, and donated them to the local children’s hospital.  The hats ranged in size from preemie to teenager.  Some were plain single color knotted hats, while others had bows or looked like cartoon characters.  Here is a picture of some of the hats I donated.

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I will never know who received the hats and they will never know who made them, but it felt good to be able to do something nice for someone else.  Having spent a lot of time in the hospital, I know firsthand how cold hospitals are sometimes.  I hope these hats bring warmth and love to the children who receive them.

While reflecting on the old and looking forward to the new, I also find myself thinking about the challenges I face during the holidays with CRPS and gastroparesis.  However, I think I’ll save that for another post… stay tuned!

 

Posted in College, Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Invisible Illnesses, My Life, Rare Diseases, Thankfulness

Normalcy – Thanks for seeing beyond my disability

Normalcy is defined by Webster as “the state or fact of being normal.” After being diagnosed with Complex Regional Pain Syndrome also known as Reflex Sympathetic Dystrophy, my life was far from normal.  At sixteen, while my classmates were getting learner permits and driver licenses, I was being diagnosed with a rare chronic disease and getting lumbar nerve blocks and epidurals.  While my classmates were anticipating their senior trip, I was preparing to have surgery.  When everyone else was worrying about not making it to class on time because of the long walk across campus, I was attempting it on crutches.

Then I got a Pride mobility scooter.  Although many classmates thought it was cool and wanted to play on it, life still wasn’t normal.  While others were parking on ramps because it was the closest place to the dorm door to park while unloading their belongings, I sat in the cold snow and rain because the only ramp to the dorm had a car parked on it.  On one occasion a campus police officer was a gentleman and waited to hold the door open as I exited the building.  When I rolled down the front deck, I came around the corner and there on the ramp set… yes he had just held the door for me and now I would to have to sit ten minutes waiting for him to come back and move his police cruiser off the ramp.  When I would call campus security to complain about a car on a ramp, they would come out, run the tags, call the owner of the car to tell them it needed to be moved, and wait with me until the person came to move the car.  Sometimes the officer would have to call more than once.  When the person would finally come to move their car, the officers usually laughed and joked with the person and warned them not to park there in the future, but since tickets were never written, no one seemed to take the warning seriously. A few times, more than one officer reported and I heard them talking between them about not being able to write a ticket because they didn’t have a ticket book or that the spot wasn’t painted to indicate it was a handicapped ramp. I wondered why an officer would report to the scene of an illegally parked car without a ticket book and why wait for the driver to come move the car if you are going to make jokes and make the ordeal seem insignificant.  It all seemed a little strange to me.

You would think going to class would be normal for all students, but my professors couldn’t even allow me to be normal student. I’ll never forget the first day of math class when the professor said with excitement, “I’ve never had a handicapped student before!” How was I supposed to respond to that? “Oh, I became disabled just so an idiot like yourself could feel rewarded having taught a handicapped student.” No, I didn’t really say that.  Instead I just smiled and overlooked it that time. After I decided to major in education, I had to take a class on including students with differences in the classroom without drawing attention to them.  I learned a lot in that class. The very first day, the professor pointed out that we all have lots of differences and that everyone has a disability of some sort…some are just more visible than others.  However,  for every disability, regardless of what it was, the professor used my name for the student in her example.  I can assure you I didn’t just imagine this.  When the professor wasn’t in the classroom, classmates commented that they had noticed the professor always used my name in her examples.  I must admit, that while I found my math professor’s comment slightly offensive, I was highly offended by the professor that was supposed to be teaching me how to include all students in class without drawing attention to their differences.  She certainly did not make me feel equal to the other students in class.

Then came the day that I was normal for a brief moment.  After ten years, I don’t remember her name, but I’ll never forget what she did.  I lived on the bottom floor of my dorm in a handicapped accessible room.  This classmate lived somewhere in the same building on a higher floor.  We often “walked” together to our science class.  Our class was on the fourth floor of the science building and as we approached the door one day, she looked over and asked if I was going to take the stairs or the elevator. I looked over at her thinking she was just being funny and realized she was asking that question seriously.  I couldn’t believe what was happening.   I felt as though my eyes and ears were deceiving me. There I sat on my three-wheeled Pride mobility scooter and I was being asked if I was going to take the stairs.  She was able to look past my disability, overlook the fact that I was using a mobility scooter, and ask me the same question she probably asked other classmates all the time.  Thankfully, she had a sense of humor because  I replied, “I think I’ll take the steps today.”  Then I patted the front of my scooter and asked, as seriously as I could, “How do you think this will do on the steps?”  She said, “I’m so sorry.  I forgot!”  I explained no apology was necessary and told her how good it felt to be treated with kindness and seen as a person not a person with a disability.  We both laughed as we entered the building and climbed on the elevator.  I may not remember her name, but I’ll never forget the day she saw and treated me as an equal…the same way she would see/ treat any other classmate.  She was able to overlook my physical disability/differences.  For that brief, unexpected moment of normalcy I will always be grateful!

 

Posted in Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Courage, Gastroparesis, Invisible Illnesses, Life Lessons, My Life

A Love/Hate Relationship

Have you ever thought you really hated something only to realize you actually love it?  I know people who wouldn’t even taste certain foods as a child, but have found them to be their favorite foods as an adult.  Well, my love/hate story has nothing at all to do with food.

The relationship started when I was a teenager.  I was diagnosed with Reflex Sympathetic Dystrophy.  While many of my so-called friends no longer had time for me,  a new friend came along.  Everywhere I went this new friend came along.  This friend was very supportive, but I didn’t want this friend.  You see, this new friend was a set of wooden crutches.  The pain was so bad and my right leg became so weak, that I couldn’t walk on it.

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Looking back, I realize that as much as I hated those wooden crutches, they carried me everywhere I went.  They helped me finish high school and start college.  As much as I hated them, they were always there when I needed them.

dscn4842I walked with crutches on an as needed basis for about six years.  Then my RSD got to the point that I was needing them all the time.  Wooden crutches became a thing of the past and I began walking with shiny silver-colored aluminum crutches.  For the next ten to twelve years, I had to have new crutches every two years because the hole that adjusts the crutches to my height would wear out from use.  Several pairs of old crutches now stand next to our washing machine…just in case someone else needs them.  They will work fine for anyone who isn’t the same height as me.  I gathered them together for a group photo…yes I believe I’ve had a little too much time on my hands.

dscn4845After about twelve years, moving became complicated.  My new-found friend was still willing to go with me and provide that much-needed support, but my legs didn’t want to cooperate.  That was when I realized I didn’t hate my crutches.  When my way of getting from point A to point B became a black aluminum wheelchair, I realized I didn’t hate my crutches as much as I once thought I did.

I spent all those years hating crutches and wishing I could get rid of them.  Now I’m wishing I could walk on them again.  I’m trying to build my leg strength so I can walk again.  Currently I can walk about six feet with a shiny, silver-colored, aluminum walker.  Six feet may sound like a short distance to everyone else, but for me it feels like running a marathon.

dscn4846dscn4847Each time I walk that short distance and collapse into a chair, I remind myself that we all crawled before we walked.  It will just take time.  With my gastroparesis and malnourishment, it’s probably going to take longer than I want it too, but I believe it will happen someday.  No matter what life throws at me, I refuse to lose hope.

By the way, if you noticed the small blue dog bone hanging on the wheelchair…that’s my doggie bags.  I’ve heard people I know refer to the take out containers at restaurants as doggie bags.  Those of us living with gastroparesis need doggie bags any time we eat.  Trash cans and commodes aren’t always readily available.  Those small rolls of bags they make for disposing of baby diapers or doggie doo are just the right size to carry with me when I am out.  I can cap them over my mouth, vomit in them, tie them up,  and dump them in the nearest trash can.  When I bought the dispenser, I had two choices…a dog bone or a fire hydrant.  As for the walker bag, it’s a one of a kind.  I made it using plastic canvas and yarn, both from the craft section at Wal-Mart.

Note:  After posting this, I thought of something I had recently read.  As I looked back at my Love/Hate image… yes I created that… I thought about an article I had read recently at TheMighty about asking personal questions about people’s disabilities.  I appreciate the writer’s openness and honesty.  The writer explained that someone had asked about her being to young to use a walker.  The writer of the article said the “Fantasy-Me boldly said, “You’re too old to be asking rude questions.””  There have been times in life I would have probably said that if it had crossed my mind. While I made the crutches different sizes in my image to create letters, after finishing it, I was reminded that mobility devices come in all shapes and sizes.  Chronic illnesses do not discriminate based on age.  Crutches, canes, walkers, and wheelchairs come in all sizes because they are for all ages.    For those of us who need them, they are simply tools or modes of transportation.  At 16, my classmates got cars… I got crutches… at least I could get from point A to point B on my own.  No, I’ve not always liked my mobility aids, but I’m learning to accept them and love them for what they do for me.

 

All photos/images are from my personal collection and are not to be used without permission.