An Indomitable Spiritual Warrior

If you have been following me awhile, you have probably noticed that I haven’t written lately. Well, I needed to disconnect. For my own sanity.

I feel as though I’m a conscript in some strange transplant infantry where the war is against myself and the weapons keep changing. They keep me in a place where I have an opportunity to see my husband and mom, yet I cannot leave. I am confined to quarters that consist of my room, other patient rooms and the hallway. A couple times a week I score a day pass for two hours that allows me out of quarters with an escort of my choosing, yet I still cannot leave the grounds. I eat mystery meat and other questionable foods. I get weekend care packages from home that contain snacks and other goodies. There is constant noise and a barrage of interruptions. The nights are filled with anxiety and loneliness. There is no AWOL. The only escape is with an eye mask and headphones. 

I am physically and emotionally drained. I want nothing more than to go home, yet I cannot. I must dig deep every day to find the energy to fight my battles; homesickness, boredom, containment, depression, agitation, anger. The list of battles goes on. Sometimes I just need to disengage. Instead of writing, I have been working on a paint by number and listening to audiobooks.

Writing is my passion. It’s also been my solace. Recently it was brought to my attention that my writing is not only important to me, but others like me. I was reminded that although the days here feel monotonous, each day does bring with it something new. I just have to look around to find it. To ground myself and find the positive. I was lovingly reminded that all these battles are opportunities to grow and strengthen.

To be a spiritual warrior means to develop a special kind of courage, one that is innately intelligent, gentle, and fearless. They can be frightened, but even so they are courageous enough to taste suffering, to relate clearly to their fundamental fear, and to draw out without evasion the lessons from difficulties. ~Sogyal Rinpoche, The Tibetan Book Of Living And Dying

I consider myself an indomitable spiritual warrior.

Chelle

 

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5 Tools For Your Emotional Toolbox

“So now I know what I have to do. I have to keep breathing. And tomorrow the sun will rise, and who knows what the tide will bring in.”   ~Chuck Nolan, Castaway

I wake up at four-thirty in the morning with the flick of the overhead light and a chatty nurse. She slaps a blood pressure cuff on me, hands me a shot glass of meds and proceeds to siphon my blood into tubes. If this isn’t bad enough, when she is done she makes me crawl out of bed to get my weight. During this process I am imagining the many ways I could maim her. Yes, I love my nurses, I am friends with many of them. This doesn’t mean I don’t fantasize about grabbing a hypodermic needle and jamming into her eye. Of course, I would never do this, but at four in the morning it’s fun to fantasize.

I definitely woke up on the wrong side of my bed. I am in a growly mood. Monday I felt invincible and strong, today those feelings have dissipated like dew on a June morning. I feel trapped in a bizarre hospital prison with no hope of escape.

We all have to go through difficult times. Even the strongest people who have a  positive mindset will struggle. We are only human after all, and sometimes at our breaking point we turn to the dark side. The toughest of circumstances can feel absolutely unbearable. Like a personal assault attacking our spirit with all its might, it weighs us down like a ton of bricks, holding us in place. So what’s a person to do when they feel this unbearable weight? You have to look within. Be mindful of what you need. Get yourself an emotional toolbox, and fill it with tools. Here are just a few of mine.

1.) Be grateful during the tough times. 

No matter how bad things are, I can always find something to be grateful for. Even if it’s as simple as a chocolate bar.

2.) Remembering how I got through the last difficult time.

Sometimes, it may only be few days since the last time, but if it worked once it may work again.

3.) Live One Moment At A Time.

It is easy to be overwhelmed when looking toward the future. For me, staying present in the moment can make all the difference.

4.) Speaking softly to myself.

I am a big fan of writing letters to myself. There is something to be said about getting your thoughts down on paper. Love yourself, and be kind.

5.) Reach out.

No one can make it alone. Whether it’s a friend, sibling, nurse or holy person; just talking about it can really go far.

We all have choices. It’s these choices that make us or break us. I could choose to give up and go home. Actually, that’s the easiest choice. Just pack up and walk out the door. However, the consequences of that decision would be catastrophically fatal. So I choose to stay in this bizarre bastille, walking laps in the exercise yard with the other wounded prisoners. Yet despite the feeling of being chaotically trapped, I wake every day with a grateful heart. For as long as I am breathing, there is hope.

Chelle

Waiting For Heart Transplant: Day 400 (an open letter to myself)

I was added to the heart transplant waitlist on August 16, 2016. That is exactly 400 days ago. The last 90 of which have been spent in the hospital two hours away from my home and husband. Some days I am sure I can’t go on, others I am sure I can. I want more than anything for my team to find me a good donor match so I can live a more healthy active life, but more importantly, so I can return home. Today I reflect not so much on the entire wait, but more importantly the time in the hospital. As you know, I am big on writing letters to myself. Here is another I would like to share with you.

 

 

Dear Warrior,

Today marks a bittersweet milestone for you. When you received the call that you were accepted on the Heart Transplant Wait list you were so grateful and relieved you hit your knees and thanked Spirit. You were so happy and hopeful, your future looked so bright. Then when they admitted you in June, no one expected you to still be in there waiting 90 days later.

Three months is a long time. You have missed so much; sipping coffee on the front porch with Bill, walking hand in hand through nature, midnight snuggles with Bill’s soft breath on your neck, listening to Skye’s barks and nips in her sleep and feeling the gentle hum of Bubby’s purring on your lap. But for all the things you have missed, you have gained so much; you’ve made new friends, you have a greater sense of who you are, your marriage is stronger, you have built a closer relationship with Spirit, and you have found a sense of purpose.

My dear warrior, you are not the same woman as you were a few short months ago. You have gained wisdom, faith and determination. Because of these days in the hospital, you are mentally stronger and more prepared to face your post transplant recovery.

I know every day you spend here feels like an eternity. But remember, we are all connected. You are here for a reason. Think of the lives you are changing with your strength and positive mindset. The physical borders of your life may have changed, but there are no limits to your spiritual one. Take this time for yourself. Look within. Meditate. Feel. Write. Share your story. This is how you can be of service to others. Your time will come dear one. When it does, all you have endured will have been worth it.

Stay strong. Stay the course. You will prevail.

 

 Chelle

https://www.donatelife.net/register/

 

 

Medications In The Land Of Heart Failure

I love frequenting our neighborhood restaurant. The waitresses know us by name, they remember our favorite dishes, they always smile and treat us with kindness. Spending the last ten weeks in the hospital with heart failure, waiting for my gift of life, I have found many similarities. Many mornings I feel as though I am visiting a restaurant specializing in medicinal cuisine.

 

                                                            Presbyteriano Café                                                                

Nurse: Good morning Chelle, how are you today?  Your room smells delightful and you have so much sun coming through your window.

Me: Best room in the place they tell me.

Nurse: Sure is. Your doctor has prepared a nice little medley for you, much like yesterday’s. I’m sure you’ll enjoy it. Would you care for a starter before hand? Perhaps Ativan or Tylenol?

Me: Yes, I believe I’ll have the Ativan, that sounds lovely this morning.

Nurse: Good choice. I brought for you a fresh pitcher of ice water, here let me pour you a cup.

Me: Thanks.

Nurse: So, I have for you today; Lasix, Spirinolactone, Neurontin, Metoprolol, Magnesium, Potassium, and Vitamin D. Those come with a side of Folic Acid, Creon, and are topped off with Aciphex.

(I watch as she tears each pill out from it’s own individual package, and drops it into the little plastic shot glass)

Nurse: Last but certainly not least, your Ativan. (Did she really just say that?) (She hands me the shot glass) (I take it, look at it, look at her)

Me: Bottoms up. (I swallow them all with the water from the small styrofoam cup)

Nurse: How does some fluids sound? We have Milrinone and Heparin on tap today. Milrinone comes with side of Zofran and the Heparin comes with a complimentary blood draw.

(Not happy about the blood draw)

Me: Do they come with fresh tubing?

Nurse: Why yes, and new caps also.

Me: Wonderful. That sounds great, one bag of each please. And the Zofran.

Nurse: Coming right up. (Hangs the new bags, changes the tubing and caps on my PICC lumens) Would you like any add-ons today? May I suggest Tums or Miralax?

Me: Not just yet, thank you though.

Nurse: If there’s nothing else I can get for you, I will see you again at 12, 2, 5, and 6. In the meantime, let me know if you need something.

Me: See ya later

 

Chelle

Register here to register as an organ and tissue donor

 

With Love, Humor and Grace

Pulling back from an emotional kiss with my husband, I saw the sadness in his eyes, the sadness that mirrored mine. He didn’t want to leave but I knew he couldn’t stay. Letting our tears flow, we held our embrace a little longer, then walked hand in hand toward the elevators. We expressed our love in a public goodbye, then I stood and watched him go until he was out of sight. I struggled to hold back the flow of tears while George and I turned around, desperate for the refuge of my room.

Almost to my destination, I caught the eye of a nurse whom I have become close to. Noting the look on my face, she asked how if I was alright. I mumbled “Sunday’s are the hardest days”, as tears flowed down my cheeks. She stopped what she was doing, wrapped her arm around me and we walked down the hall. Once in my room, she held me as I cried on her shoulder telling her how much I missed my husband and my home. She explained that being away from those we love can sometimes be a harder struggle than the actual battle we are facing. She reminded me of what I strong woman I am. Reminded me that not only have I have made it this far, but I did so with love, humor and grace. And reminded me that when we get through to the other side of this journey all the suffering and sacrifice that my husband, my family, and I have made will all be worth it.

My strength being renewed, I gave her a hug, thanked her and told her to get back to work. With my head held high, I wiped my tears and told myself I was ready to continue the journey.

I only wish she could have done this for my husband as well.

Chelle


Please register to be an organ donor so someone else doesn’t have to go through what we are. Wwwdonatelife.net/register/

Every Obstacle Is An Opportunity

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Officially, I have end stage heart failure. I am on an end stage heart failure medication that flows directly into my heart. Having said this; I, myself, am far from end stage. I have been on the transplant list at a status 1Ae for 26 days now, but whose counting? Actually, UNOS is counting. Every day you wait, counts. I am finally at the top of the list for my blood type and body size, so our wait is nearly over. It is important you know that a heart transplant is not a cure, it is merely an exchange from a terminal illness to a chronic one. And that is fine by me. I know how to do that, have been doing it my whole life.

Being a long-term patient here as been trying at times. I’ve laughed, cried, screamed (internally of course), shook my head, rolled my eyes, and cried some more. And I wouldn’t trade one minute of it. I have literally stripped down my life. No running errands, no business dinners with my husband, no traffic, none of the day to day distractions. I am left with myself. Just me. Just my thoughts. I could ignore them, keep myself distracted in other ways like tv, books or music. But that isn’t me. I embraced my thoughts. I chose to make this experience into an opportunity. I took a hard look at my life, and asked hard questions. My answers have enlightened me.

When faced with the reality that this surgery could lead to the end of my Earthly existence, I realized I have everything I need. Although I am not ready to leave them, I know my family loves me whole heartedly and any past issues are long resolved. I have created and maintained valued friendships, and found my best friend and soul mate. And most importantly, I have found purpose in my writing. I am fulfilled.

When I arrived here, I felt my world had shrunk. I was wrong. My world is overflowing with love, and I have been enlightened spiritually. My life is richer because I am here. For the first time I am fully present. In this moment. Facing my own mortality has taught me many things. Life is not what I do or what I have, but who I am. And that cultivates love. To fully engage with those around me. To listen with purpose and intent, instead of letting my thoughts wander.

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I expressed my gratitude every day leading up to my hospital admission. All our necessities were met; house, car, health insurance, food. Life was great, and we were happy. But some how, I missed it. There are so many more things that I took for granted that I don’t now; fresh air, birds singing, neighbor children’s laughter, the smell of the hardwoods and dirt, sunshine on my face. Even without these things, I am still very happy.

Without death, life would have no meaning. I am fortunate to learn this at such a young age. My journey is nowhere near over, and I will continue to grow and flourish. If I could give you one take away from my experience so far it is this. Don’t be a slave to your work. Sit in quiet reflection. Engage and be present with your loved ones. Because time is an illusion my friends. You’ll blink, and it will gone.

Chelle 

Click here to register to be an organ and tissue donor

 

An Open Letter To My Future Donor

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Dearest Friend,

I feel we’ve met before, on another spiritual plane, in another time. I’ve spoken to you in the morning dawn and whispered to you late at night. You may not be ready to leave yet, and that is okay. No worries, I have time, I can wait. Live your life, have adventures and find love. You and your family have been in the forefront of my mind quite a bit lately. It is hard to express how much love I have for someone I have yet to meet.  I want to assure you that I will honor and celebrate your life everyday. That you will become part of my family and one day I hope to be part of yours.

Together our spirits will become one. We will hunt and camp together, sing in the rain, act silly under a summer full moon and dance by the firelight. I’ll teach you to write, and together we will finish my book. We’ll meditate, pray and be still together; we’ll be active and strong. We’ll see the mountains of Montana and the deserts of Arizona. When I learn more about you, your passions will become mine. We’ll pursue them together. We’ll root for your team and mine.

There is no thank you large enough in this world for the gift you and your family are giving us. You are giving me back my life. You are giving parents more time with their daughter, siblings more experiences to share, nieces and nephews a chance to learn who their Auntie is and a husband more time with the love of his life. The only way I know to repay you is to live everyday to the fullest, to speak your name, share your story and honor your life.

With love and gratitude,

Chelle

Be a hero. Be an organ donor

My Best Birthday Yet

my 1st birthday

“There are those who hate to see their birthday arrive. Ah, but not I. For each year is a gift, each day is a gift. I am thankful and am grateful for this day of my birth. I find motivation within to live this year so let it begin!”

~~Theodore W. Higginsworth 

 

Waking to a light rap on my door this morning, I slid my eye mask up to my forehead, took a deep breath and started another day in the hospital. A young care aid pops in with towels for my daily wash up. “Happy 4th of July,” she declares rambling on about how quickly the day arrived and where did the time go. “One’s perspective is relative,” I answer groggily from my bed. Looking at the confusion on her face I explain,”To you it may seem fast, however I have been waiting for a heart transplant for 324 days. To me it feels like an eternity.”

After she leaves, I wash up and eat my fake eggs. Shortly after, my husband shows up bearing gifts and clean clothes. I think I was more excited for the clean underwear than the gifts! We sit on my bed and get down and dirty. Not like that, gutter mind. I opened packages from my family as well as strangers. I was overwhelmed by everyone’s thoughtfulness and generosity. About this time there was a knock on the door, three mail room employees walked in with donuts singing to me. And that was the beginning of a great birthday filled with off-key singing. The doctors sang during rounds, the nurses sang at shift change, and just when I was ready for bed the food service workers sang and presented me with a small cake. In between vampiric nurses and singing doctors, I managed to video chat with my family which was much-needed. I also got to go outside for the first time since I have been here. It was hot a humid and only lasted five minutes, but I was glorious!

Every birthday has been a hard-earned milestone for me. I say this every year, and every year it’s true; I never expected to still be here, which in itself is pretty amazing. I have learned to think of my heart defect as a wonderful gift. This gift has made me grateful for every day, even the bad ones. Having TGA has forced me to realize how valuable and precious time is and has allowed me time to learn beneficial life lessons. For instance:

  • procrastination is for the healthy and the young
  • every moment is a miracle
  • don’t waste time on false or toxic people
  • always check my feet for slippers before leaving the house

Today I proven once again, no matter what my circumstances, with a positive attitude and the love of family, friends and strangers I can make any day into a wonderful one.

Chelle

Be A Hero. Be An Organ Donor.

 

 

What I Do All Day

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Morning comes early here in the hospital with whispers by a nurse with a vampire fetish. Clicking on a dim light, she sucks blood from my PICC line into small tubes while I try to continue snoozing.  As she opens my door to leave, the white hall light splashes across my floor while the dings of my neighbor’s call bell sounds urgently. I roll over snuggling down trying to get comfortable, when I hear a soft rap on the door. What seemed like 10 minutes was actually two hours. It’s the care aid with a giant scale for my daily weigh in. I can’t help but feel like a resident at a weight loss camp. I bet they don’t get weighed in at 6 am though. After I see my bright red numbers appear she hands me my telemetry monitor, I gather my tubes, IV pole (which I named George) and shuffle back to bed.

An hour and a half later, I am lightly snoring away in dream land when I hear a light knock at my door. The door opens to the commotion of the nurse shift change. My night nurse bids me farewell till evening, while my day nurse takes my vitals and hands me morning meds. I slide to the edge of the bed, grab a hold of George and my tubes then  to the bathroom where I pee into what they call a hat. It looks like an upside down white hat, sits in the toilet and measures my output. Good times! I wash up for the day, grab George, gather my tubes and head to my recliner where I wait for my low sodium fake eggs and potatoes which I heavily cover in ketchup. I hear the pleasant ring of my video messenger and have a lovely chat with my husband before his meetings start for the day.

Shortly after that the nurse practitioner/fellow come in to see how I feel and my night was. I tell them what I told my nurse, they do a quick assessment and off they go. Then I settle in with a little light reading, currently The Heart of the Buddha’s Teaching, while I wait for the attending doctor to come around. Depending on the day, what happens next can vary. Once a week my PICC dressing gets changed, twice a week my tubes/caps get changed, twice a week my linen get changed and daily my room gets cleaned. If it is the last two I like to go for a walk, I can’t stand the smell of hospital disinfectant. When they are through I saturate everything with lavender water.

Back in my recliner, I listen to the buzz of activity in hallway. I feel like I’m living in a small town and peeking out the windows.  Engrossed in my reading and note taking, I am distracted by a call of yoo-hoo at my door. My nurse walks in with more meds, a new milrinone bag and takes my vitals, again. About this point my attending doctor, which changes every few days but is always a heart failure doc, comes in with his entourage of fellows, students and groupies. Today is Doctor Ramani. A tall Indian man with kind eyes. I repeat to him what I have told the three people before him and he tells me what the attending before him did. “It is just a waiting game now and we will make it homey as possible for you.” Ok, then.

After another trip to the bathroom, dang the IV lasix works well. Me and George go for a late morning stroll down the hall. I walk and George rolls about 75 feet, then I return to my room. I curl back up in my recliner, pop open my laptop, find a good movie to watch and wait for my lunch to appear. My favorite is the hot turkey with mashed potatoes and carrots. I have to say it is a strange feeling not to be able to go to the fridge anytime I wish. I do however have a snack drawer and the nurses let me store things in their fridge. When I am done eating, someone comes in and grabs my food tray. Then my nurse pops back in with more meds, vital check and blood draw. Are you seeing a pattern here?

Now I am free until my next meds/vital check at 5:00. I usually try to walk every hour if possible, take a nap and do some writing. Walking the halls is a good distraction because I can chat with people. Mainly the nurses so far, it seems I am the only patient up moving around. My day is also sprinkled with battery changes, extra meds (potassium, magnesium), aids documenting my input/output, and just random whatever.

Around 6:00, I am back in my recliner to await my dinner drop off. I should explain that I get a menu everyday to choose what I want for the next day. I usually make substitutions of course, I like something lighter for dinner. The food isn’t too horrible if you know what to order. I like to walk a bit after I eat then wash up and settle in bed for the night. By 8:00 I am nestled down in my bed, my video messenger ringer goes off and I chat with my lovable hubby again. After we blow kisses and say our good nights, I practice a little meditation to boost my spirit and clear my mind. Just as I am getting drowsy, there is a knock at the door. My day nurse pops her head in to say she’ll see me tomorrow and my night nurse walks in. See gives me more meds, checks my vitals and says she’ll be back in a couple of hours to draw blood. Of course she will. And like clock work, the vampire nurse is comes in, clicks on a dim light and sucks blood from my PICC line.

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Soul Mates

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I believe Rumi said it best when he stated,

“The minute I heard my first love story I started looking for you, not knowing how blind I was. Lovers don’t finally meet somewhere. They’re in each other all along.”

I am so fortunate and grateful to have found my soul mate. So many people these days never find that connection. Our spark was instantaneous and strong. We complete each other. Our souls intertwine perfectly.

Although Bill was in the medical field, I was nervous about explaining my cardiac situation and future transplant.  You see, my first marriage sort of imploded partly due to the fact that my ex wasn’t mature enough to handle my illness. I never expected to find a man who would not only be accepting of my impending heart failure diagnosis, but would jump right in to the chaos with me. But that is exactly what Bill did, with a “bring it on” attitude.

My health stayed stable for the first couple years of our relationship, then it took a nasty downhill ride, like a skier on a black diamond slope. This was the start of his caregiver metamorphosis. He takes care of me in so many different ways, a loving approach and a no complaints. Sitting in on countless doctor visits and sleepless nights in uncomfortable hospital rooms, holding my hand through it all. And when everything seems to much for me to handle, he is at his best; holding me, wiping away my tears and whispering encouraging words. He restores my hope and faith.

We are grateful for everyday we have together, more than other couples it seems. We understand how precious life really is, how health can change in an instant. Our unity is strong, I know we can withstand anything that comes our way. My heart transplant is a perfect opportunity for us to grow stronger and deepen our love.

We chose each other long before we came to our Earthly bodies and we will be joined together again when we leave them.