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

Absent

The struggles of living life with complex regional pain syndrome and gastroparesis are always present on the good days and the not so good days. I’ve not written on my blog the past few weeks because sometimes the struggles try to take us under.

The past two months have been difficult for me. I can honestly say that there have been several times over the past two months that I thought I might be facing the end of life. On top of my CRPS and gastroparesis, during the past two months I’ve had a kidney stone, a urinary tract infection, fluid in my ears, diverticulitis, several migraines, and shingles. I realize my daily fight against CRPS and gastroparesis causes dehydration, sudden drops in blood sugar and blood pressure, and probably weakens my immune system. That’s the only link I can find between my recent health issues and my long-term chronic conditions.

I volunteered at a five-day camp in July and have basically been absent from life since. I’ve been out for doctor appointments and tests and to go to the store for food and supplies. On several occasions, I’ve just asked my family to pick up what I need.

I’ve spent most of my time the last few weeks in bed. Not feeling well takes its toll on the body. Not feeling well for weeks at a time really takes its toll. Have I slept all that time? No. I’ve done a lot of laying with my eyes closed and thinking.

Life isn’t easy with sickness. I’ve spent a lot of time thinking about how hard I have tried over the years to hide my illness. I thought I needed to be like others to fit in. Honestly, trying to hide my chronic conditions has done nothing except leave me exhausted and miserable. I’ve realized over the past few weeks that there is nothing wrong with being sick and there is nothing wrong with allowing others to know your sick. I’ve realized that I didn’t choose my chronic conditions and there’s no reason I should try to pretend they don’t exist. I’ve learned I need to embrace my life the way it is and enjoy what I can of it. I’ve also learned to let go because I can’t do it on my own. If someone wants to help, I need to let them. It’s not that I want help, it’s that I need it.

So, while I may have been absent from my blog and public view, I’ve been very much present in my life. I’m slowly learning to embrace my life as it is. I’m realizing that I need to be the person I am and quit trying to be what I think others want me to be.

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Posted in Chronic Illness, Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Gastroparesis, My Life, Rare Diseases

3 am

It’s not my usual posting time and honestly I’m not sure why I’m blogging right now. There’s not a lot of other choices of things to do at 3am, so why not blog?

Some may be wondering, why 3 am? Well, because I’m awake, dealing with nausea, vomiting, and pain. Let’s be real… sleepless nights are not a rare thing for those of us with CRPS and/or gastroparesis. Today has been a rough day. For the past couple of weeks I’ve been more sick. I don’t know why, I just have. It seems as if everything I eat is just sitting in my stomach. As gross as it may sound, I see what I eat twenty-four hours earlier, being vomited up undigested. I’m not sure if it’s just my stomach being extra sluggish or what. I’m also having muscle spasms in the area around the gastric stimulator battery in my abdomen. I tried calling my GI motility doctor today. I left a message. Maybe they will call me back on Monday.

I’m also having  some new joint related pain. It was my knee and ankle last Saturday. Today it’s my shoulder and wrist. I’m not sure what is going on with my joints. They feel like they are popping out of place. My primary care sent me for labs today to check for arthritis. It may just be my CRPS/RSD causing problems. I guess we’ll find out Monday when the lab results come back.

I realize this isn’t my normal blog post, but sometimes I guess it’s good to share the tough times. I’ve learned to put up a front and hide my trials from the world. As I told a friend from church this week, “Sometimes we feel like crawling into bed and just crying, but instead we put on our church face and tell everyone we are okay.” Well, the truth always finds you out and we all have good days and more challenging days. If we don’t share our challenges, people get the idea that we never have bad days. For me, rough days often out number the good, but no one sees me on those days. When I don’t feel good, I stay home.

I need this ever single day

There’s one thing that I can assure you of though, CRPS/RSD and gastroparesis can’t keep a good girl down. I refuse to give up and let chronic illnesses out do me. I know God is in control and He and I are going to get through this. We are a team and with Him, nothing is impossible. I may not be able to do many of the things I want to do because of pain and sickness, but that doesn’t mean I have to give up. I have hopes and dreams just like every one else. CRPS/RSD and gastroparesis may have changed my path in life, but they can’t steal my happiness.

For with God nothing shall be impossible. Luke 1:37.

 

Posted in Chronic Illness, Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Gastroparesis, Inspiration, Invisible Illnesses, Rare Diseases

Humor on a bad day…

The  past couple of days have been rough with my complex regional pain syndrome and gastroparesis. I’ve been more nauseated. I’ve vomited more than common. I’ve been in lots of pain. I’m exhausted. I’m not looking for pity… just stating the facts. When faced with these not so good days… which I’m forced to deal with on a weekly basis, I have to make a choice… do I lay in bed and cry because I feel miserable or do I find something to do to keep my mind busy. I’m not ashamed to admit that there are days I cry because I don’t feel like doing anything else. Some days I just sleep because I don’t have the energy to do anything else. However, some days I don’t feel like getting out of bed so I spend the day in bed with my tablet searching for inspiration. It never fails that Pinterest has something I’ve never seen before that brings a smile to my face.

Living with gastroparesis, I’m constantly having to defend my choice not to eat when I’m at church dinners, family picnics, and other outings where food is the main attraction. I know that if I eat certain foods, that more than likely I’m going to vomit. Many times, people want to know why I am not eating. I explain gastroparesis in as simple terms as possible and with as little detail as possible. While people are eating isn’t the best time to explain that I vomit nonstop when I eat the wrong foods or wrong amounts. While they are eating isn’t the best time for me to eat and vomit either. That makes for an award situation. However, some people persist and want to know more. So, I’ve grown tired of making the situation seem less complicated than it is. For a long time I blew my gastroparesis off as no bog deal, even though I knew it was. Now, when people persist, I give the details. They don’t usually ask twice. 😀 So, I explain it’s not that I don’t want to eat. When I eat fatty foods, fresh fruits and vegetables, meats, and food high in fiber, I vomit. Then I usually get a look of pity, which I completely despise, and am asked, “So what do you eat?” I found this picture on Pinterest today and while it may be referring to a gluten-free diet, I feel it portrays my gastroparesis diet perfectly. I don’t know from one day to the next what I can eat. A food that may be safe today may make me sick tomorrow. That is how my life works and I’ve adapted. I carry a roll of trash bags at all times because I never know what the day is going to hold.

#Hashimoto's #Autoimmune_Disease — Living Naturally Autoimmune

This next sign really made me smile. I was diagnosed with complex regional pain syndrome when I was fifteen years old.  I started having issues with gastroparesis in my early twenties, but wasn’t diagnosed until I was in my thirties. Many times, I’ve been told I’m too young to have the problems I’m having. For those who have told me that… this sign is for you. Unfortunately chronic illness does not discriminate based on age.

At 41 the doctor said you have the neck of a 70 year old! True story. Chronic pain doesn't end. I'm 55 and still disabled.
For those of you out there that are also facing chronic illness this one’s for you. While many people don’t understand what we are going through, we have to stick together and
hang in there. On bad days we need to reach out to each other and help each other along. On good days, we need to educate the world and bring awareness to invisible, rare, and chronic illnesses.
Chronic Illness - ones that aren't known by everyone or at all.

 

Posted in Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Courage, Gastroparesis, Inspiration, Life Lessons, Rare Diseases, Strength

Broken

Yes but no one whats a broken crayon

I saw this quote on Pinterest a few days ago and as a person living with a rare and several chronic illnesses, it made me stop and think about life.

When you buy a box of crayons, you expect unbroken crayons with those perfect little crayon points. You don’t expect a box full of pieces of crayons. As a matter of fact, most people throw away broken crayons. I hadn’t really thought about it until I saw the quote, but broken crayons do still color, so why do they get thrown away?

Living with multiple chronic illnesses, I can relate to the broken crayon that still colors. Due to illnesses beyond my control, my body is “broken.” I have pain and weakness in my legs and feet and am unable to walk. My stomach doesn’t empty, which makes eating difficult. It also adds to my weakness and causes me to be tired. Sometimes, I feel like people treat me like the broken crayon. Maybe I’ve got it all wrong, but it seems to me as though I get left out of things and I’m sure it’s because people think I’m “not able” or “don’t feel like it.” Maybe they are afraid to ask out of fear of hurting me.

Sometimes I feel like I, like the crayon, have been thrown out because I’m broken. However, like the crayon is still able to color, I still have purpose and am useful. I may not be able to run marathons or win pie eating contests, but there are lots of things I can do and am good at. My ears work fine and I’m a good listener. While I may be physically weak, I’m spiritually strong and am willing to be a shoulder for others to lean on. I may spend most of my days in bed because I simply do not have enough energy to get up, but I can talk on the phone and send emails. I can also inspire others going though similar situations by blogging about my experiences. When my carpal tunnel and neck pain cooperate, I can knit, paint, and do crafts. I may not currently be physically capable of working, but I still have purpose.

Being disabled doesn’t make me useless, it just points my life in a different direction and gives me a new purpose.  Small chunks of broken crayon are often disposed of because they are difficult to color with. However, I have melted broken crayons before and used cardboard and plastic molds to form them into new crayons. Instead of putting them in the trash, I made new, often larger, multi-colored crayons. Just like crayons broken into little pieces can make coloring a little more difficult, CRPS and gastroparesis have made my life more difficult. Many of the activities I did before CRPS (hiking, playing volleyball, etc.) are no longer possible. With gastroparesis, I can no longer eat many of the foods I once enjoyed. Just like I took the broken pieces of crayons, melted them. and molded them onto new crayons with new purpose, I’ve had to take my broken life and put the pieces together in a new way to find purpose. I’ve had to find ways to adapt. I’ve learned new things, found new hobbies, and adapted to my new life. I miss my old life before CRPS and gastroparesis, when things seemed easier and life seemed less complicated, but I’ve come to accept my new life and continually look for things I can do to make life better, both for me and others.

If you are struggling with a new medical diagnosis or changing abilities because your chronic illness is getting progressively worse, I encourage you to keep fighting. Don’t give up. As chronic illness warriors, we must stand tall and stick together. Talk to others fighting the same fight. There’s strength in numbers. You may feel broken, but know that broken crayons still color. No matter how broken your life may seem, you are very important. You are loved. Your life still has purpose.

 

Here are a few more broken quotes I came across that I liked..

King David committed adultery & murder - he sinned big, but repented bigger - he is a model of what real repentance looks like - he wrote Psalm 51 as an agonized cry to God for forgiveness - God not only forgave him but called David "a man after His own heart" Like & Repin thx. Follow Noelito Flow instagram http://www.instagram.com/noelitoflow

Beautifully Broken Quotes | Broken clouds pour rain, Broken soil sets as fields, Broken crop yield ...

 

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 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 #MyMightyMonth, Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Creativity, Gastroparesis, Knitting and Crafting

I’m Human..and a little creative

This is yesterday’s journal prompts. I ended up taking a trip to the emergency room yesterday afternoon and was there until around eleven. My picc closed off and I had to go let them unclog it and open it back up. That’s the first time that’s happened. I thought they would have to take it out, but they had medicine that opened it back up. I thank God for that. Without my IV fluids I dehydrate quickly.

Personal Prompt: What is the one thing you wish others knew about you?

I’M HUMAN! Yes, I know all caps is considered yelling and yelling is rude, but sometimes that’s what I feel like yelling.

Sometimes I wonder if I’m unable to hear, unable to speak, unable to think, and invisible. Apparently being in a wheelchair classifies you as being all of the above. I get tired of being treated as some inhuman species just because I have some physical ailments that cause me to need a wheelchair and picc line. For anyone who doesn’t understand, my complex regional pain syndrome and gastroparesis do not affect my ability to see, hear, or speak. Neither disease is contagious either, so you won’t be catching them from me. I’m not made of glass and am not easily broken. If you genuinely care and want to know something, it’s okay to ask me questions. However, if you are only asking me how I’m doing because you think it’s the polite thing to do…don’t bother with asking. The words a person uses to ask questions about how I’m doing, along with the body language that goes along with their questioning, usually makes it pretty clear whether or not they care.

Creative Prompt: Create a list of creative things you’d like to accomplish this year. This can include books you want to read, crafts you want to do, etc.

This year, I hope to buy yarn and knit myself a sweater or a blanket. I’ve knitted lots of hats, scarf, baby blankets, baby sweaters, mittens, stuffed animals, and purses/bags for other people, but I hardly ever make anything for myself. I bought yarn back in November to make me a hat. I must admit, I felt a little selfish buying yarn to make something for myself. I told my mom that and she reassured me that it was okay to make myself something… that I wasn’t being selfish.

This year, I would also like to get back into painting. I have several blank canvases that my sister gave me. They are just waiting for a wave of creativity to wash over me and spill onto them.

I have several other little craft projects I would like to do this year. I’m thinking about making gastroparesis and complex regional pain syndrome awareness bracelets. Just a little something I could hand out to family and friends to help raise awareness.

I’ll try to post photos occasionally of the things I make this year.

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, Dreams

Back to School Dreams of Starring On A Game Show

Hello again.  So, this is day seven of thirty.  Today marks the end of my first week of My Mighty Month 30 Day Journaling Challenge.  I’ve decided to mix things up a bit and give these daily challenges a title a little more interesting than the boring old “Day x of 30” I’ve been using.  For the rest of this challenge, I’ll be working on creative titles that give you a hint about what I’ll be writing about.  Today’s title is kind of like the before and after category on Wheel of Fortune.

Personal Prompt: You’re going back to school! What would you study and why?

School Girl Raising HandThe personal prompt for today would relate to the “Back to School Dreams” portion of my title.  If I were to go back to school, what would I study and why is a question I have asked myself many times.

Despite the obstacles that stood in my way, I managed to earn a Bachelor of Arts degree in Elementary Education and  Master of Arts degree in Educational Technology.  Without accommodations, I would not have been able to complete either degree.  Now, I hold two college degrees that I’m not physically able to do anything with.

On several occasions I’ve run the idea of going back to school through my head.  If my health were to improve, I probably would.  I would like to get a degree in counseling and work with children and teenagers with chronic illnesses.  I was diagnosed with migraines when I was six years old and CRPS/RSD when I was fifteen years old. I know first hand how hard those childhood and teenage years can be when you have an illness that you, your friends, and your family don’t understand.  I remember the hours of research I put into finding out what CRPS/RSD was.  20 years ago, many of the people caring for me in the medical field hadn’t heard of this disease and I felt like I was having to teach a medical course to every nurse, ER doctor, and physical therapist I saw.

I would like to become a counselor for children and teens with chronic illnesses because it would be a way for me to pay it forward.  There were family members, friends, teachers, and people in the medical field who stood by me and supported me in my efforts to learn everything I could about this rare, little known disease, called Complex Regional Pain Syndrome or Reflex Sympathetic Dystrophy, when I was diagnosed with it in 1996. I would like to be able to help children and teens learn everything they can about chronic illnesses they are diagnosed with.  I would also like to be there to support them through their trials and rejoice with them when they overcome obstacles in their lives and reach milestones no one thought they could.

Creative Prompt: Create a game show.  (What are the rules? How many contestants are there? What sort of prizes are there?)

News Reporter on TVThis would be the “Dreams of Starring on a Game Show” portion of the title.

I think I would like to create a knowledge Game Show where the contestants are doctors.  The show would last one hour and have three contestants.  I would like for a portion  of the game show to be a question and answer session where the doctors compete against each other to answer questions about random medical facts.  These questions would range from simple facts all doctors should know to harder facts about specific diseases and procedures.  I would also like a hands on portion where doctors are given a patient with a specific health concern which they have to treat.  During this portion, the doctors would have access to medical information available to the general public on the internet.  A panel of judges, which would be made up of a real-life doctor specializing in a field related to the illness of the patient being treated, a nurse, a celebrity doctor from some medical television show, and two members of the general public picked from the viewing audience that day.  These five judges would award points to each doctor during the hands-on portion of the show based on bed side manners and accuracy of treatment provided.  I would recommend the patient being treated on the show be either a healthy person or a manikin/doll/dummy, but allow people with chronic illnesses to volunteer if they wanted to.   The doctor having the highest score at the end of the show would win money to donate to a medical research program of their choice. I’m not sure what I would call the game show.

 

 

Graphics from: http://www.mycutegraphics.com/