Live Like You Were Dying

  In life I’ve heard that fear has two meanings…

…I feel like the second one “Face Everything and Rise” best describes how I have faced life with multiple chronic health conditions. While others may see my health issues, surgeries, procedures, tests, etc. as gross and gruesome, for me sharing is accepting and acceptance brings healing. If I seem down at times, that’s okay, I think most people would if they had been diagnosed with the most painful medical condition known to man, along with other incurable diseases, and told they had to live with it the rest of their life because there’s no cure. Grieving the loss of yourself and who you were before chronic illness is just as real as grieving the loss of someone else.

Living with Complex Regional Pain Syndrome (CRPS) and gastroparesis, along with all the symptoms, and co-morbid conditions, I think it’s safe to say that exhaustion doesn’t even begin to describe my energy level, which seems non-existent right now.

February 9, 2019 was one of those more tiring days for me. I had not slept well the night before because my canine sidekick Pepper was very sick. Pepper had lymphoma and I knew it was only a matter of time before he would leave me. I was doing everything in my power to make him comfortable. My nephew and niece were spending the weekend with us while their parents went out to celebrate their anniversary. The three of us spent most of the day February 9, 2019 sitting in the floor holding Pepper with his neck and head fully supported to make it easier for him to breath. As we sat there, we talked about what a good dog Pepper had been for everyone. I talked about how we would miss him and explained that he didn’t have a lot of life left. I was doing my part to prepare my niece and nephew, and me, for what was coming in the next few days. As I sat in the bathroom floor with the two of them and “our” dog, I was trying to hold myself together and support them because I knew they loved Pepper as much as I did. As I was explaining how sick Pepper was, my nephew looked up at me and said, “You do realize we are all dying don’t you?” My first thought was what a deep and bold statement that was for a child 11 years old to make. Then he went on to say, “But you are dying faster, that’s why you have to have that [and he pointed at my picc line].” That last statement hit me like a ton of bricks.

Back in February of 2022, my sister and I were discussing someone from church being sick and somehow we ended up talking about how I wanted my nieces and nephews to watch me live, not watch me die. Thinking of the Tim McGraw song “Live Like You were Dying.” I sent my sister the following in a private message:

She said, “ I was in my early forties, with a lot of life before me, when a moment came that stopped me on a dime. I spent most of the next days looking for the sun rays and talkin’ about the options and talkin’ about sweet time.’ I asked her “When it sank in that this might really be the real end, how’s it hit you when you get that kind of news?” And she said “I went nose diving, I went curve stair lift climbing, I crocheted 2.7 days on a bull named Fumanchu. And I loved deeper, and I spoke sweeter, and I gave forgiveness I’d been denying.” And she said, “Someday I hope you get the chance to live like you were dying.“

Live is a word to describe the way someone spends their life…it is the dash between the two dates in an obituary…its both the ups and downs in life…it’s how you choose to spend your life…it’s how others will remember you. To live like you were dying means to spend your day as if you have no tomorrow. When most people talk about life they often talk about marking items off a bucket list…things they want to accomplish….places they want to go…people they want to meet…etc. For me, I have a list of things I would like to do before l die, but I have accepted that many of these things are currently out of reach given my health. In all honesty, right now I just want to spend my better days with family and friends making memories. However, if I could do all the things I want in life, here’s my “Live Like You Were Dying” list. The ones with checkmarks are the ones I have completed or I’m currently working on. (I’ll post photos of my in progress below the list.)

1. ✅Tell the world about my Jesus and be a better me
2. ✅Make memories with family and friends
3. ✅Quit nose diving (power wheelchair with elevating seat has cut down on the number of times I fall)
4. ✅Start stair lift climbing
5. ✅Crochet 2.7 days on a bull named Fumanchu
6. Make and donate 100 camp critters (crocheted stuffed animals) to nonprofit organizations. (I’m at 33/100)
7. Touch the ocean (At 42, I’ve never seen the ocean. I spent the week of my senior trip in the hospital and my siblings went to see the ocean with relatives while I was in the hospital one time)
8. Hear Tim McGraw sing “Live Like You Were Dying” in person – I know a concert would put my CRPS pain into overdrive, but just meeting Tim McGraw and giving him Fumanchu would be fun
9. Smell the Smoky Mountain fog
10. See Niagara Falls
11. Go to camp one last time

     

    

    2. CRPS Awareness Virtual 5K with my family.

    

    2. January 1, 2023 crochet pizza party with my nieces and nephews.

    

    3. Elevating wheelchair seat makes me 5’6″

    

    3. Elevating wheelchair seat helps me reach cabinets and shelves up high without falling.

    

    4. Stairlift climbing

    

    5. Crocheted Fumanchu

    

    6. Crocheted camp critters I have donated.

     

 

Battle Scars: The Markings of a Warrior

Trigger Warning: Photos in this message may be disturbing to those with weak stomachs or suffering with pain. 

This story is a hard one for me to share. Being open and honest about my chronic illnesses  and the physical toll they take on my body isn’t easy. Everyone likes hearing stories of triumph and overcoming challenges, but not everyone appreciates the story of what it takes to get there. To be totally honest, I feel like I’m playing a mental baseball game…trapped running between bases wondering if I should advance  forward to tell my story or run back to safety and keep the story to myself. I have learned through the years that there are many different kinds of people in the world and when a person shares their story they are guaranteed to attract them all. I don’t share my stories for pity, but there’s always someone out there who gives it anyway. I don’t  share my stories for prestige, but there’s always someone who thinks fighting a chronic illness is a heroic act. I share my stories to let others fighting similar health conditions know they are not alone and to inspire them to continue to fight. For that reason, I’ll share this story. I realize my medical journey has been judged by other as being gruesome, but I give anyone who doesn’t want to read or see the gory details permission to stop reading right now and no longer follow my blog.

Trigger Warning: Photos in this message may be disturbing to those with weak stomachs or suffering with pain. 

Merriam Webster defines the term warrior broadly as a person engaged in some struggle or conflict. At some point in life everyone faces struggles and conflicts of one kind or another. For those living with chronic illnesses, whether it be something common like diabetes or something less common such as CRPS, we face struggles and conflicts daily. 

Chronic illnesses aren’t something that we have today and it’s gone tomorrow. Chronic illnesses lead to years of ongoing doctor appointments, tests, procedures, therapies, meds, and surgeries. We find ourselves being asked to make choices we never dreamed we would be making and doing things we never dreamed we would be doing.

Today, September 25, marks the twenty-sixed anniversary of my CRPS diagnosis. So what better day to share this post

During those twenty-six years a lot has happened. I went from being a shy school girl to becoming an advocate trying to raise awareness of my health conditions to help others understand. I also advocate for those who will be diagnosed in the future, in hopes that they don’t have to suffer as much as I have.

Trigger Warning: Photos in this message may be disturbing to those with weak stomachs or suffering with pain. 

My battle with CRPS and gastroparesis have left me with my share of battle scars. I’ve had things put in my body and things taken out of my body. I’ve been burned, glued, taped, and stapled. I’ve had numerous tests, procedures, and surgeries. I started counting the number of times I’ve been put to sleep these past twenty six-years and I stopped counting at 45. I’ve had my good days and my not so good days. I’ve felt every emotion from anger to sadness to happiness and everything in between. I’ve seen a lot of doctors…anesthesiologists, audiologists, cardiologists, dermatologists, gastroenterologists, gynocologists, neurologists, optometrists, orthodontist, orthopedics, pain management, podiatrist, psychologists, and urologists. I’ve also seen somewhere between ten and twenty physical therapist and occupation therapists.

The one thing I haven’t done these past 26 years is give up. I’m a warrior and warriors fight. Yes, there have been lots of times that I wanted to give up, but I haven’t. When I think I can’t go on like this I think of the pediatric pain warriors I’ve met at camp and keep fighting. It’s hard to fight for myself, but I am always ready to fight for them.

Living with an invisible illness, it’s often hard for others to understand the level of pain and other invisible symptoms I deal with on a daily basis. My warrior marks tell a different story by making my invisible illness visible. My battle scars all tell a story of resilience and perseverance. Here are some of my battle scars…

Final Trigger Warning: Medical photos below. Please do not scroll any farther if you don’t want to see them.

 

Continue scrolling at your own risk….

 

 

Marvelous Magnificent Modern Medicine

As children, I think most of us probably daydreamed about time machines and futuristic gadgets. I can remember as a child writing stories for school about the future. The writing prompt often asked for a description of what we imagined life would be like in 2020. Next year, I guess we will find out.

As both a middle and high school student, I participated on our school’s future problem team. We were given futuristic problems and worked together as a team to come up with solutions which were both creative and original.

While I do recall thinking we would have flying private vehicles and things of that sort in 2020, I never dreamed that modern medicine would be like it is, or that doctors would be filling my body with cutting edge technology.

Most people have heard of and know someone with a pacemaker or defibrillator. These devices consist of a battery pack wired to the heart muscles to keep the heart beating correctly.

Living with complex regional pain syndrome, I had a similar device implanted in 2004 for pain management. Instead of being wired to shock the heart, mine was a neurostimulator that sent mild electrical signals to the nerves in my spine in order to block, or short-circuit, pain signals. Over the years my neurostimulator battery has been replaced a few times. The first battery was estimated to have a life of four to five years. My current battery is rechargeable and lasts about ten. The size of the battery has also changed. It has gotten smaller.

My gastroparesis was not responding to traditional medicine, so in 2016 a gastric stimulator was implanted. My gastric stimulator shocks my stomach to help it contract and move food along. The gastric stimulator is a newer device. It isn’t rechargeable. My first battery only lasted two years. It was replaced November 19, 2018.

After putting in the gastric stimulator, my doctors were disappointed to find that even though my tests showed a big increase in stomach function that I was still having problems with digestion. During the summer of 2018, tests revealed that I had slow colonic motility as well. When my doctors started talking about a sacral nerve stimulator, I wasn’t as easy to convince as people might think. Yes,  I had two similar devices that were making a big difference, but I wasn’t sure I wanted another stimulator. Besides, how was a battery shocking a nerve going to make me use the bathroom? To me, that sounded crazy.

Although I didn’t want another stimulator, I went to see the colon surgeon to see what my options were. I had promised my niece I would do whatever was necessary to feel better .The doctor talked me into a trial. If the trial didn’t work, we wouldn’t have to go ahead with the fully implanted version.

Much to my surprise, the sacral stimulator did work. The trial version was put in November 20, 2018 and the permanent was implanted December 4, 2018.

Even with all these high tech gadgets, my body does not function properly. I still live with level three to four pain at best. I still vomit 3-4 times a day. I still deal with nausea and bloating. Compared to constant unbearable level 8 pain and vomiting 20 plus times a day, this is a big improvement.

Some people see me in pain, still vomiting, and having to eat a gastroparesis friendly diet and wonder if the three stimulators are really helping. I might still be sick, but at least now I am able to enjoy a little bit of life. My color is looking better. I have more energy. I’m no longer losing weight. I realize these devices only mask symptoms, they don’t fix the underlying problem. That’s why I share my story and try to raise awareness. As modern medicine and technology continue to change, I still dream of a day when complex regional pain syndrome and gastroparesis patients have better treatment options and maybe even a cure.

As for now, I’ll try to adjust to my new life as a robot. My cousin’s daughter (I think she was 8 years old at the time) asked me what it felt like to be a robot. I was confused until she explained that I went into surgery a human and after they put all those batteries and wires in me I came out a robot.

For those wondering…being a robot…feels a whole lot like being a human.

 

That finishes out 2018. I’m about to catch up again. Stay tuned as I continue on my journey in 2019.

November – Knowvember – Nervember

November is recognized globally as Complex Regional Pain Syndrome awareness month. More specifically, the first Monday in November has been set aside as Color the World Orange, an annual event where people around the world work together to raise awareness of CRPS. Many city, state, and world leaders issue proclamations declaring it Color the World Orange Day and CRPS Awareness Month and many landmarks are lit up orange for the cause.

Last year, I had dyed my hair orange in order to raise awareness of this ugly monster that has challenged every part of my life for the past twenty-two years. This year I was hoping to set up a table at a local business to share information about CRPS. I also wanted to host an event where various orange colored snacks were served, while I shared not only information about CRPS, but also the story of my life living with this chronic pain condition.

As all of us living with multiple chronic health conditions know all too well…things don’t always work out the way we plan them. Following The Nightmare before Halloween, I started the month of November looking like a giant bruised up pincushion and feeling like my right arm and hand had been torched. My fine motor skills with my right hand were basically non existent. Given the fact that I am right handed, this made life a little more challenging. Given the increased pain levels and the decrease in function, my plans for the month were changed drastically.

On November 2, I traveled three hours (that’s one way, not round trip) to let the radiology department at a hospital in the city where my GI motility doctor is located try to get a picc line in. To say the least, I was nervous. My GI motility doctor assured me that my orders would say that if a picc line couldn’t be inserted in three tries that I was to get a port instead.

To make a long story short, they did get a picc line in with less than three tries, but since there is more to the story, I think I’ll go ahead and share the long version.

After arriving at the hospital November 2, I was taken to a room where I put on my lovely new dress. It was a bit drafty, but I’ve not found a hospital yet that didn’t have drafty dresses. All my vitals were checked, papers were signed, and I was taken into what looked like an operating room to get my picc line put in. I later found out this room was the angio suite. The team introduced themselves, covered me with sterile drapes, and started the procedure. The doctor told me I was going to feel a quick sharp pain as he inserted the needle and a sting as he put the numbing medicine in. After a short time, the doctor asked if I was okay. I told him I was fine. He then said something about me not showing any response to him numbing my arm. I was shocked to find out he had numbed it, because I didn’t feel a thing. While the outside of my arm felt like it was being torched, I apparently didn’t have inside feelings. At this point, I realized nerve damage had been caused by the multiple failed tries two days earlier.

My vein was quickly and easily located and the doctor commented on how good it looked and that he didn’t know why the previous hospital couldn’t get a picc line in. I explained that they had been able to get into the vein, but nothing would feed through. He began to feed the guide wire in and ran into the same problem. Instead of just running the ultrasound machine around on my arm and trying the same thing over and over, he told me he was going to put dye in and see where the problem was. As it turned out, he did find a problem. My vein was totally collapsed and nothing was going through. I know my voice said it all when I asked, “What do we do now?”

The doctor’s response was, “I’m going to use a balloon and open it.” At this point my brain went wild trying to process it all. In a matter of seconds my though pattern went something like this: my grandparents died of heart problems…mom and dad are in the waiting room and don’t know I’m having this balloon procedure…will anyone tell them…what will mom’s anxiety do if something goes wrong…dear God don’t let me die Sallie needs me. Sallie is my niece. All those thoughts ran through my head almost instantly and the look on my face must have revealed my concern because the nurse quickly realized this was a procedure I had never had before and began to explain it. She explained step by step what the doctor would do and what I would feel. She warned me that I would have chest pain when the doctor actually inflated the balloon.

When the procedure was over, I was in tears from pain. The nurse then informed me that “I had done great! Most people scream.” They also informed me they normally sedate people for that procedure because of the pain, but couldn’t me because I didn’t have IV access. I guess I didn’t have time to scream. I was too busy praying that I lived through it.

Relieved that it was over and I was back in recovery, I hear the nurse explaining to mom, as she enters to find me holding to my chest and in tears, that I had a balloon procedure to open up my vein and that the pain should ease up in thirty minutes or so. It hurt to breathe, I felt like I was having a massive heart attack, and I felt raspy like when you have pneumonia, yet I still managed to get out words to my mom that I was okay.

Never have I been happier than I was to get home and crawl into my bed than I was that night. As crazy as I knew it would sound to anyone else, I prayed a prayer that night of thanksgiving…for nerve damage. My Nightmare Before Halloween  had only ended when it did because I couldn’t take the pain any longer. If they had not hit that nerve and I hadn’t called it quits, I’m afraid this story would have had a different ending.

However, my story wasn’t over; I still had adventures to go on and God still had work for me to do.

At least my picc line was in, right?

The story just continues to get better from here. Stick around to read more about my efforts to raise awareness, life as a robot, and more. My pain management doctor said I needed to be sharing my story as I lived it. Well, this is life unscripted…the good, the bad, and the ugly.

The Nightmare Before Halloween

Playing catch-up makes for long posts, please bate with me.

I saw my motility doctor in July, I was having more nausea and vomiting, so I assumed my gastric neurostimulator had a dead battery. The nurse scanned it with the handheld computer and assured me it was still working properly.

The last four days of July and the first day of August, I was in Scottsville, Kentucky at pediatric pain camp. As I have mentioned before, The Center for Courageous Kids is an amazing camp for kids with chronic illnesses. Camp totally exhausts me, but it  is somewhere I can go, feel a sense of belonging, and try to make a difference in the lives of others.

After returning home from camp in 2017, I was sick for several months. This year turned out about the same. I came home from camp this year bleeding from my bowels. I wouldn’t get it checked out while I was at camp because I didn’t want to have to go to the hospital in a town I wasn’t familiar with and my family four hours away.. I did go to see my primary care physician when I came home. It turned out to be a tear. A few days resting at home with my feet elevated and it healed.

September and October were pretty rough months. I just blew my poor health off as exhaustion from volunteering at camp. With my body already weak, I figured I was just having major flare-ups of gastroparesis and complex regional pain syndrome.

October 2, I went to see my primary care physician because I was passing blood vaginally when my bowels moved. I’m sure some of you, my readers, are screaming, “Too much info!” I don’t normally share this type of personal info, but it’s a part of my nightmare from October. We knew from a previous test that I had a mild to moderate rectocele and my primary care physician was concerned it might be opening up as a fistula, so she ordered a CT scan  My insurance refused to prior authorize the test and I couldn’t afford to pay out of pocket, so the CT could not be done.

The next morning I was having abdominal pain and pressure. I went to the bathroom and passed nothing but blood from my bowels. My primary care physician had instructed me to come back if anything seemed worse. My insurance still wouldn’t agree to a CT scan, so my primary care physician told me to go to the emergency room.

After sitting in the waiting room for over two hours, the pain and pressure was so bad I was feeling like I was going to pass out. I kept feeling like I needed to have a bowel movement, but couldn’t. I thought something was about to rupture, but thankfully  nothing did. The emergency room wasn’t much help. They gave me meds to ease the pain, verified I was passing blood, and released me with instructions to have a colonoscopy in two to three days. That was October 3.

On October 8, I had a routine appointment with my gi motility team  This time, they scanned my stimulator and confirmed that my gastric stimulator was now showing that it needed its battery replaced. We also discussed my slow colonic motility and the bleeding issues I had been having. The doctor put in orders for me to be scheduled for a colonoscopy, a battery replacement surgery, and an appointment with a colon surgeon to discuss the possibility of doing a trial sacral nerve stimulator to see if the would help with my delayed colon.

The doctor who had treated me in ER had recommended a colonoscopy in two to three days, but the earliest they could schedule a colonoscopy was October 25. I knew that I needed the colonoscopy, so I agreed to take that appointment, even though it was my birthday. Happy Birthday to me, I got a colonoscopy! Yes, they did sing Happy Birthday before sedating me.

Everything was normal with my colonoscopy.  However my picc line was hard to flush, like it gets when it is clotting off, so my doctor ordered cathflo to unclot it. My picc wouldn’t unclot, so the doctor started working on trying to get the picc line replaced because I had several surgeries coming up.

In order to keep me from having to travel three hours to and from the hospital where she works, just for  a picc line replacement, my doctor scheduled for the replacement to be scheduled at an affiliated hospital closer to home.

October 30th, I arrived at the hospital and reported to registration. The lady at registration confused me, because she kept referring to my infusion. Looking back, I wonder if that was a foreshadowing of what was to come.

When I was called back to the heart lab, where they we’re to replace my picc line, I found out a mistake had been made in the computer and I had been listed as having an infusion .However, when the picc team as contacted, they had me listed as a picc placement. The procedure being done was updated in the computer and I was ready to roll. Or so I thought.

The picc team arrived to put the picc line in. Mom was sent back out to the waiting room for what was expected to be a thirty to forty-five minute procedure. It was finally time to begin.

At this point, my vein was located by doing so ultrasound of my upper arm, I was covered in sterile drapes, my left arm was numbed, and one of the two picc team ladies began trying to put a picc line in. After what seemed like a long time, she explained that she couldn’t get the wire they use when placing a picc line to feed through my vein. So she decided to try the other arm. She removed the picc line that wasn’t working properly from my right arm and repeated the process. She ran into the same problem on the right arm. So, she traded places with the other picc team nurse and let her try.

The second nurse hit a nerve and I nearly jumped off the bed. She said, ‘I think I hit a nerve.” I told her I knew that’s what she did. She said it was hard to see nerves on the ultrasound machine. She continued to try to feed the wire in, but when she hit the nerve for the third time, I couldn’t take the pain any more and told them I was finished.

The nurse mentioned trying in another vein, but I wouldn’t agree. My right arm was hurting so bad from where she had hit the nerve that I was in tears. The picc team cleaned up, suggested I might have blood clots, instructed me to call my doctor, and left.

The nurse that had called me back and put all my info into the computer prior to the procedure came in to tell me I could get dressed and leave. She had me call Mom to come back. I was in a lot of pain, but knew it was because the nerve in my right arm had been hit while trying to place a new picc line.

As mom came in, the nurse warned Mom that I was in a lot of pain. The next words out of the nurses mouth shocked me. She looked at Mom and said, “She probably feels like she’s been tortured and put through hell. They stuck her SIXTEEN times trying to get it in.” Even today, two months later I don’t understand why they tried sixteen times. They had used localized numbing medicine to numb my arm, so I didn’t realize I had been stuck that many times.

Getting dressed to go home was a new challenge. Both arms felt limp and life. The right arm also felt like it was being torched. Mom helped me get dressed. I asked for discharge papers, but the nurse said I didn’t have any.

I was in so much pain when we made it home that we went straight to see my primary care physician. A knot had popped up near my elbow, so she sent me for a Doppler study to check for blood clots. Thankfully none were found.

In the mist of all the pain, I still had my sense of humor. Due to storms being predicted Halloween night, trick-or-treating had been moved to October 30. I jokingly told Mom we should stop at all the businesses to get candy. However, I wasn’t sure if I should say I was a sprinkler or a pincushion.

What we arrived home, I just went straight to bed. I felt like I was living a nightmare and was hoping to wake up and it all be a bad dream.

Mom took some pictures of my arms that night. Here they are. You can imagine how bad they bruised over the next few days.

Stay tuned for what happened next.