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

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Gratitude Is A State Of Mind

As I wake in my hospital room this morning for the 77th time, I stare at the ceiling and sigh. My first thought is one of frustration, for I am living a nightmare. My second thought is one of gratitude, for I am thankful I am waking up at all. I’ve known friends in my situation that did not.

I’m trying to hold on to the gratitude in my heart when the parade of techs, nurses and doctors starts. I miss the solitude and privacy of our home. The quiet mornings with hot tea, dippy eggs and snuggling with my husband and fur babies. I take a deep breath and remind myself that my situation could be worse. I am fortunate to have such a great cardiac staff here at Presby. They never seem to forget that they may work here, but I live here. And that amazes me. They continually support my family and I going above and beyond their duties by; purchasing organ transplant tee shirts, giving me cards, chocolate, and small gifts. One gift I cherish above all others; the gift of their friendship. We have laughed and cried together. There will always be a special place in my heart for them.

As morning turns to afternoon, grey clouds drift through blue skies and my thoughts drift with them. September is here, the first day of fall is just a couple of short weeks away. I love this time of year, the urge to be back home baking and hanging autumn decorations is almost overwhelming. I am reminded of our friends who have made up a fundraising committee in our honor. They have been working hard putting together a reverse raffle to offset medical/travel/lodging expenses for my husband and I. They have managed to arranged the perfect location with great food and obtain fantastic raffle prizes, gift baskets, and more. The most precious gift to us is their time. The time spent in planning meetings and the Saturday they have given up hold the the event.

I struggle to find words to express my appreciation. We are touched by the overwhelming generosity and kindness that has been shown to us these past eleven weeks. Not only from family and friends, but from strangers also. The outpouring of prayers and well wishes continues to humble me.

Neither myself nor my family imagined that I would still be here in the hospital waiting for a donor heart. I try to find comfort in the fact that the Divine has a plan in motion. I pray for my future donor every day and remember that he or she still has a bit of life to live, and I am glad for it. I think of how far I have come spiritually knowing in my heart that all our suffering will be worthwhile.

Please let me express my appreciation again for all everyone has done and continues to do for us.  I give thanks and show gratitude to Spirit who has designed a plan for my highest good and who has given us the strength to endure and persevere.

Chelle

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

 

My Heart Transplant Journey So Far..

Happy Waitaversary To Me! Today marks the one year anniversary that the United Network of Organ Sharing added me to the national organ transplant wait list. I am very grateful just to be on the transplant list. It is quite an exclusive group, like a posh country club without the fancy food, expensive booze and pretentious conversation.

Looking back at this past year, there have been many changes. Some good, some not so good. The first ten months was filled with travel restrictions, extreme fatigue, emotional instability  and the beginning of my loss in independence. The first thing I have learned after two months residing in the hospital, is those ten months were a cake walk compared to this. I had my furbabies, my husband and we were all together at home. Now we are two hours away from each other. And every day we wait seems like an eternity.

time I have to agree with Dr. Einstein here. Residing in this place I have experienced time on time’s terms. And the terms are, none. It doesn’t exist. It’s an illusion. It’s all relative. When you are living your usual normal life, time seems to fly by. However, when you are waiting for a life saving organ transplant it moves at a snail’s pace. Once I started getting the “go juice” pumping into my heart, the game changed from a physical one to almost all mental/spiritual one. The thoughts foremost in our minds are; how many more days will we have to wait, will they find me a match, and if they don’t, I want to die at home.

Life is constantly surprising me. Death has always been my adversary, now in a strange twist it’s more of an ally to me. And that, my friends is very unsettling. I feel as though we are playing some kind of hellish game. With every thought or prayer of the doctors finding me a donor heart soon, I envision Death waiting in the shadows with an irreverent grin on its nasty face. Yes, I understand that my donor’s death and transition to the next plane will happen regardless of my obtaining a heart. Yet the guilt and sadness lives on. For now.

Some days I feel as though I have woken up in the cuckoos nest and expect to see Jack Nicholson walk around the corner at any moment. These are the times I have to practice self-preservation through self-care. The do not disturb sign goes up, the sleep phones go on and The Honest Guys do their thing. Keeping busy is my salvation here. Working on my writing, practicing meditation, reading, goofing off with the nurses and enjoying family visits have all been my saving grace. I feel there are many more lessons to be learned. Letting go is one of them. For if I can let go, I shall find peace again.

Chelle

It only takes 30 seconds to save a life. Register today.

 

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/

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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