We Have To Feel It To Heal It

Why do we feel the need to hide our struggles and present ourselves as having our shit together? Why do any of us feel the need to appear more put together than we really are?

We are emotional creatures, and we were born to express emotions freely and openly. But somewhere along the way, many of us learned to repress our emotions in order to fit in, earn love, or to be accepted. We hide our struggles because we learned throughout childhood and adulthood that showing signs of struggle is a bad or uncomfortable thing.

As infants and toddlers, we didn’t hesitate to show signs of struggle. When we were tired, hungry, upset, or blew out our diapers 💩, we cried or threw tantrums to communicate that we needed help. As young children in school, we raised our hands and asked for help from our teachers if we didn’t understand something.

But at some point while growing up, we become conditioned to stop asking for help and we start to hide our struggles. We stop raising our hands in class because we’re told we ask too many questions. We stop asking our parents for help because they told us to figure it out for ourselves. Increased expectations from our family, friends, employers, and even ourselves feels like mounting pressure. We’re so afraid of doing or saying the wrong thing that we paralyze ourselves and do nothing. We fear that negative response of not receiving help when we need it or our feelings being dismissed.

I grew up in a home where the motto was “Children are to be seen, not heard.” There was little emotional expression tolerated, let alone accepted. No one validated or helped me process difficult emotions in a healthy way. Anger was met with anger, fear went unacknowledged, and there was plenty of shame to go around. My parents didn’t model how to deal with difficult emotions, as they seemed to struggle with that themselves. When those emotions surfaced, I felt ashamed of my failure to be a “good girl.” Trying to hide the pain from others and myself, I built walls, put on masks, and soldiered on.

The truth is, we all hide our emotions occasionally. We pretend, avoid, and deny uncomfortable emotions as a defense mechanism. We do this most often with difficult emotions like guilt, shame, fear, or anger. When we experience events that emotionally overwhelm us and we’re unable to process what is happening, we hide them deep inside us where others can’t see them. And we end up hiding them from ourselves too. Yet, they’re still there. These unresolved emotions get trapped in our body where they build and fester. They drain our energy, which leads to burnout, and we become emotionally imbalanced. They undermine our overall wellbeing.

No matter what our struggles are, there are people who can and want to help. When we share our struggles with those around us, we give them permission to voice their struggles too. We may never know just how life changing that permission may be to someone. They may be feeling alone, overwhelmed, or even at the end of their rope, and we can help by giving them an opportunity to receive our understanding and support. The moment we make ourselves vulnerable, we give others permission to do the same.

The bottom line is, we’re human. We’re all imperfect and we all struggle. No one has their shit together all the time. No one has a perfect life and no one feels happy, confident, and positive all the time. Struggling is a normal part of life. We have to feel it to heal it.

Expectations Aren’t Guarantees

I’ve always had high expectations for myself. I expected to go to college. I expected to graduate at the top of my class. I expected to have a career in healthcare. I expected to have a job lined up before I graduated from college. I expected to get married, buy a house, and for us to have children. I expected to travel the world before and after retirement.

I had a very linear view of life. I believed that by working hard and “doing what I’m supposed to do,” I would go from point A to B to C. News flash: Life is NOT that simple.

In July 2018 I had my first anaphylactic reaction after labeling bottles of breast milk for babies in the NICU at a local hospital. I knew of my allergy to the chemical mercaptobenzothiazole, but only associated it with gloves at the time. I wasn’t aware of how extensive the chemical was until the allergist told me. It’s found in rubber and adhesive products, as well as gloves and latex. Common items such as rubber bands, ear phones, erasers, rubber soles on shoes and boots, band-aids, elastic in underwear and swimsuits, tape, and glue would now spark life threatening allergic reactions if I came in contact with them. Even the residue of a rubber band that used to be on a pen was enough to cause an anaphylactic reaction. That’s how sensitive my body is to this chemical.

For months I kept trying to go back to work. I expected to return to work. But my health continued to decline and I was hospitalized every few weeks to every few months for allergic reactions, severe asthma, or hereditary angioedema flares. I spent days in the ICU on the ventilator each admission. Ultimately It was determined by a judge that there was not a single job that I could do based on my medical conditions.

Out of left field, the life I expected was gone. I never considered the possibility of becoming disabled at the age of thirty seven. I was thrown into a new reality of gnarled, tangled grief. I had to accept the painful realization that the life I knew, the one that I expected to live, was gone. It felt like everything in my life that I worked so hard to accomplish was being ripped out from under me. You aren’t prepared for the complete life shift that happens when you get diagnosed with an illness that can ultimately be your demise.

My expectations were nothing more than thoughts in my mind. Assumptions based on what I wanted at the time, or “that’s the normal thing to do,” or “that’s what so and so wants me to do.” We all want to live a happy and fulfilling life, but our expectations aren’t guarantees.

We tend to think the bad stuff we hear about only happens to other people. We’re aware that it exists. But we feel like it’s just some abstract thing happening somewhere else. Until it happens to us.

I had to accept and learn to live with the limitations of my new life. At first, disappointment pooled inside of me like poison. Nothing I could do was good enough in my eyes. I wanted to do more. I expected myself to do more. I found myself floundering in a new reality where I felt like I was constantly failing. But I had to gain a new perspective when setbacks occurred and stop feeling like individual moments were the be-all, end-all. I needed to become less attached to a prescribed way of living.

I had to let my old self go. I had to mourn the person who was staring back at me in the mirror every day and essentially bury her. I kept comparing myself to who I used to be and that’s not who I am anymore.

I still grieve the old me. I miss the badass I used to be. I miss being accountable to my career and work ethic. I grieve my old self whenever I am feeling defeated, especially when I am reminded that a simple task requires a lot of modification to do. Basic things that people take for granted. Like climbing stairs. Tying shoes. Standing long enough to take a shower. Opening the mail. Buying produce at a market. Licking an envelope to seal it.

There will be days when life feels awful. You will feel pain, loneliness, and fear that can be heartbreaking. Maybe you cry to yourself, “This isn’t the life I chose.” Perhaps you feel like “I don’t deserve this” or “This is so unfair.” You aren’t broken for thinking this way. These feelings are not reflections of who you are, nor are they any indication of what your future looks like. Our feelings are not permanent residents, but merely temporary visitors who come and go.

The tediousness of my new life wears me down to the core sometimes. Some days I still grieve the loss of the life that I expected to live. When these feelings visit me, I acknowledge the pain. I lower my expectations of productivity. I give myself permission to rest while I process my thoughts and feelings. I tell myself it’s ok to fall down. Then I get back up, dust myself off, and move on.

Acceptance Is The Key To Be Truly Free

Acceptance is imperfect. It’s difficult and messy, but ultimately leads to a sense of freedom. I’ve had a lot of painful experiences in my life that I needed to accept. Choosing acceptance has been crucial in helping me move past my feelings of fear and frustration when life throws me a curve ball.

A few years ago I was diagnosed with a life threatening allergy, a mast cell disorder, hereditary angioedema, and my asthma rapidly worsened. I was in and out of the hospital every few weeks, on and off the ventilator most of those hospitalizations, and unable to completely care for myself. My husband became my caretaker and our home became filled with adaptations. From grabbers and shower chairs, to hand rails, canes, and a basket filled with medications that would put Mommom’s pill basket to shame. Everyday there’s 31 pills to take, plus 3 nebulizer meds every 4-6 hours, 2 different types of insulin, 2 inhalers, 1 injection for osteoporosis, and a partridge in a pear tree.

My career as a medical techologist in the blood bank came to a screeching halt. My life threatening allergy alone made me a liability that no employer wanted to take on. Hearing a judge declare that there is no job I am eligible for was like getting punched with a forearm shiver. My illnesses initially caused so much loss and disappointment. I was dealing with the fear of exposure to my allergy, the shame of unemployment, and the guilt of not being the active wife, granddaughter, and friend I wanted to be. I didn’t want to accept that this would be my life. A life without a career. A life revolving around my medical care. A life where I was no longer independent. A body I no longer recognized. I wanted to go back to the way things were and patch the life that I knew back together again. I felt like accepting my illness was accepting defeat.

So how did I move from a position of resistance to one of acceptance? How can we find some wiggle room in situations that may feel utterly suffocating? Chocolate and chicken nuggets help, but what really grabbed me by the short hairs was realizing that if you focus on the hurt, you will continue to suffer.

All human life is fragile and sickness doesn’t discriminate. Pain is inevitable for all of us, but life is constantly in a state of flux. We hurt, we heal. We struggle, we grow. Things get hard, then things get easier. If I were Jerry Seinfeld and my friend had just thrown $20 out the window, I would end up finding $20 in my coat pocket. I would be Even Steven.

My daily life is a well choreographed ballet of organized chaos. Every meal, medication, breathing treatment, finger stick, and insulin injection has to be perfectly timed. Even mundane tasks like washing laundry, cleaning dishes, taking a shower, and watering the plants have to be balanced with my medical care. Any deviation can cause a setback in my health. Then the dance pivots and it’s a race against the clock to see if we can manage my illness at home, or the ballet stops and we have to go to the hospital.

I have learned that acceptance is not defeat, resignation, or giving up. It is an acknowledgment of the truth. By making peace with our reality, we remove the sting of our emotional suffering. This gives us an opportunity to become unstuck and make the best of the hand we are dealt. Once we accept our situation, we can move forward with greater courage, determination, and strength.

There is so much beauty in the world to balance the pain. When we accept what is and enjoy what we can, peace becomes possible, and then we are truly free.

Rebuild Relationships with Fresh Experiences Instead of Sour Expectations

People won’t always be who you want them to be. Some will let you down. Some will show up when you least expect it. Some will drift away. Some will grow with you. Some will see things the same as you. Some will see things differently. Some will test you. Some will teach you. Some will use you. Some will bring out the best in you.

It’s a tough pill to swallow realizing that the people who are supposed to protect you and love you are sometimes going to hurt you. I was estranged from my parents for eight years. Growing up I was a very independent child and didn’t require much attention or assistance with things. I believed that parents should help their children in the ways each child needed. I felt that my siblings received that help from our parents but I did not. You know me, I can’t keep my mouth shut. So I vocalized my disappointment to my parents. Over. And over. And over again. But the result was always the same. A trifling ass argument between me and my father while my mother just cried.

When my siblings needed financial assistance with a car, our parents provided it. For me, nada. When I needed my parents to cosign student loans so I could attend college, the answer was a firm no. When I was scheduled for multiple surgeries, my mom offered to come help me. Then she canceled at the last minute every time. But when my sister was ill and needed surgery, mom and dad were there to help her. Eventually I was no longer receptive to any help from my parents because I expected them to bail on me. And I got sick and tired of explaining how I felt to them, only for the conversation to turn into an argument. Every. Fucking. Time. I was fed up with them invalidating my feelings. I made one last ditch effort to talk through our problems, but that went tits up as usual, and my parents and I parted ways.

Mommom’s funeral was the first time I had seen or spoken to my parents in eight years. They seemed shocked and scared by how sick I looked. Less than a week later, I was in the hospital on a ventilator due to an anaphylactic reaction. They started contacting me regularly after that, asking questions about my medical conditions. There seems to be a genuine interest in wanting to understand how I manage my daily life with a life threatening allergy, mast cell disorder, severe asthma, and hereditary angioedema. Their interest in trying to understand my medical conditions and taking precautions to keep me safe is the kind of help I would want and expect from a parent.

Sometimes what we see in other people can be a projection of our own attitudes or beliefs toward them, and not necessarily a reflection of their actual behavior. I had to learn to let go of that projection before I could learn to forgive my parents. And I had to learn to forgive them before I could rebuild a relationship with them.

There were moments I had trouble letting go of my expectations of who my parents should be and what they should do. Eventually I realized that I had to accept things the way they were, NOT the way I wished for them to be. Sometimes letting go of someone means releasing your grip on the idea of who they should be.

I learned to forgive my parents when I stopped seeing them as the idea of what I thought parents should be. This wasn’t an easy process because I had to face shortcomings in my parents as well as myself. For me, it was my determination to prove my point. With my parents, it was their lack of help when I needed it.

Life is a series of turning points. We get to choose whether we stay in the same place, move forward, or decide it’s time to turn around and start again. My parents and I didn’t agree to disagree. There were no apologies or hashing out of old shit. We just agreed that we wanted peace and to move forward. Since then, I have been able to start rebuilding a relationship with my family based on fresh experiences instead of sour expectations.

Rolling With The Punches

Chronic illness paients are a unique kind of creature that many people don’t talk about or understand.

We condition ourselves to roll with the punches. No matter how brutal things get, we keep rolling. Our life depends on it.

Our eyes see the unfathomable, sights that would keep a healthy person awake at night. And yet we roll.

We try to not take things in life too seriously. We know how delicate and brief it truly is. We are reminded of this every day, so we keep rolling.

We face frequent doctor visits, medical tests, treatments, and hospital stays. We hold out our arms, knowing pain is coming, but also subconsciously knowing it’s necessary in order to help us. And yet, we keep getting back up and continue rolling.

We are resilient, but at the same time, it’s a heavy burden. Our hearts feel things differently from those who are protected from this type of consistent and repeated adversity. We cope, perhaps too well. We don’t crumble under life’s pressures. We embrace them and keep rolling with the punches. 

Sometimes we appear cold and emotionally unavailable. We can be seen as unapproachable. We come off as bossy because we have to advocate for our own health and safety.

You will never see the world through our eyes. If we love you, we wouldn’t want you to. We do our damndest to protect you from it. We tend to downplay our situation. Sometimes you won’t even know we’re in the midst of a Category 5 medical hurricane. We walk from hell to healing knowing we still have a long way to go. But we keep rolling without batting an eye.

Please be patient and kind with us. You never know what battlefield we’re walking through. But what you will see is us rolling with the punches. Always.

Life Is a Gift And One Day You Have To Give It Back

It’s been a little over 3 months since Mommom passed away and I still don’t feel like I’ve grieved her yet. Perhaps it’s because my own health monopolizes so much of my time that it distracts me. It breaks my heart that I couldn’t visit her as much as I wanted to over the last couple of years. I felt like I was failing her. I felt like I wasn’t doing enough. I know it wasn’t my fault I couldn’t visit her due to my medical conditions and the COVID pandemic, but it still breaks my heart.

My grandmother’s unconditional love has given me wisdom. Her love has made me realize that I am special, cherished, and strong. I don’t have to try to become someone because I already am someone. I was “punkin” to her, Poppop, and Uncle Miles. Now I am a badass warrior queen 😁 I was loved by her, and it’s the type of love that changes you. I treasure those moments we shared and her spirit continues to stay with me.

My brother, Mommom, Poppop, & me
Mommom & me at my high school graduation

Mommom showed me that life is a gift, and one day you have to give it back. Life goes by fast. It makes you think you should hold on tighter, fight harder, and become better. You learn to surrender to the fact that you can’t make everything last. But some things do. The most important things last.

Love is what stays when everything else has dissipated. Love is what we know even when we lose our memories of the past. That feeling remains in our soul even when the knowledge of it is lost. I knew Mommom felt my love even when we didn’t get to see and hug each other. I couldn’t control Mommom’s declining health or my own, but I made each moment with her count. That’s all I could do.

Mommom taught me to simply be myself and that I am enough. Society can make us feel like we have to climb the corporate ladder in order to be important. It pressures us to be thinner, richer, and look younger. We show only our best moments on social media to appear successful. This is all superficial crap! Where is authenticity in all of this?

If you feel like you’re not enough, be yourself anyway. Love anyway. Show kindness anyway. Fart in public anyway. Drop the f bomb anyway. Lick the cake or brownie batter out of the bowl anyway. Life is not about being popular or admired by everyone. It’s about being authentic in a world that tries to make us think we are not enough.

Mommom’s love for her family, friends, and the community was undeniable. Her life was filled with little joys. Whether it was baking sweet potato biscuits, playing yahtzee and seeing who got “dirty dirty” (the old quarter that got passed around like hot potato when someone got a yahtzee) sewing clothes, admiring G pick a bird clean, or just sitting at the kitchen table shootin’ the shit. Life is filled with little joys we share with the people who take up the biggest spots in our hearts. I may not remember everything throughout life, but I will remember Mommom’s life as a gift and that I was loved.

Tell That To Your Face

“How are you?” “I’m fine.” We say it all the time. It’s short and sweet. Like strawberry shortcake. But far too often it’s not true. It’s written all over our faces that we’re not actually fine. I don’t know about you, but my face ALWAYS gives away that I am not okay even if I say I am.

So why do we say “I’m fine” if we don’t really mean it? We want others to think everything is working out great for us because we’re afraid of the shame, embarrassment, and judgment that might come if people knew that we don’t have our shit together.

We’re hoping to convince ourselves and others that everything really is okay. But pretending that we don’t have any problems, difficult emotions, or conflicts is a façade. It seems easier to simply avoid certain problems, traumatic memories, and difficult feelings. However, avoidance isn’t a good long-term strategy for our well being. Often, the longer we try to ignore things, the bigger the problems become. So, why do we deny our problems or pretend to be okay when we’re not?

We pretend to be fine in order to avoid conflict. We fear that by sharing our true feelings or opinions, someone might get upset with us. This can create anxiety or at least feel uncomfortable. We use “I’m fine” to shield ourselves from painful emotions. Many of us grew up in households where we weren’t allowed to express our feelings of anger or sadness. We were told “I’ll give you something to cry about,” “suck it up,” or “get over it.” We were punished when we expressed our feelings or our feelings were ignored. As a result, we learned to suppress our emotions.

We also deny our problems and feelings because sometimes they’re overwhelming. We don’t always know how to articulate what we feel or how to solve our problems, so we try to ignore them. We don’t want to be difficult or to be a burden to others because we fear that might push people away. It feels safer to pretend we’re fine and to be a dependable coworker, cheerful friend, or a laid-back partner who doesn’t complain.

I’d rather be honest and authentic and disappoint some people than to exhaust myself trying to keep up the façade of perfection.” -Crystal Paine

If you’ve ever felt like you had to hold it together in order to put up a front for others, just know there is freedom in expressing your true feelings. Many people put on a proverbial mask to avoid showing their vulnerability and potentially making others feel uncomfortable. If you’re not accustomed to opening your heart to people, start by sharing one thing you’re thinking or feeling but may be tempted to keep inside. Opening up to others will allow you to be yourself, and from there you’ll see who’s willing to accept what you have to say without judgment. You can also offer support to others and let them know you’re happy to listen with an open ear. Giving people room to share pieces of themselves lets them know you’re there for them and they can be honest with you.

Many times when we avoid sharing our feelings with others, it’s because we haven’t processed our emotions. Give yourself permission to feel whatever you feel, without judgment, and learn to recognize when you’re lying to yourself. Stop telling yourself you’re “fine” when you’re not. Keep it real. You’re not going to be honest with others if you’re not being honest with yourself.

We tend to beat ourselves up when we do not respond, act, speak, or think how others believe we should. We put pressure on ourselves to meet everyone else’s expectations without truly acknowledging our own needs. It’s a heavy burden to hide behind a mask and pretend that everything is hunky-dory. There’s power in being vulnerable and sharing your authentic self with others. You don’t have to hide, pretend, or feel bad about not always being positive. You’re not weak, you’re human, and you never have to apologize for that.

Moving Through the Pain

Hello! How are ya now? Good and you? For those of you who regularly follow my blog, you may have noticed my nearly 3 month hiatus. There’s a lot to catch you up on, so let’s get crack a lackin’!

Back in February I had surgery on both eyes due to cataracts that formed as a result of the high doses of prednisone I have been on. Just another reason to hate this GD prednisone! I swear. 🙄 My cataracts formed in the center of my eyes and grew very rapidly, affecting my entire field of vision. The surgeries went off without a hitch, but I was left with such blurry vision afterwards that I couldn’t read, drive, or use the computer. So that meant no blogging until I could get glasses. I had to wait 6 weeks to get my glasses prescription because my eyes had to fully heal from the surgeries. Once I got my glasses, it took me a few more weeks to get adjusted to seeing through them since they’re trifocals.

Right after I got my glasses, my grandmother’s health declined to the point where the family decided it was time for hospice to come in and help make her as comfortable as possible. She passed one week later on April 27th. She was the one blood relative that I had the closest relationship with. It broke my heart not being able to visit with her over the last couple of years due to my poor health. We would talk on the phone whenever we could during this time, but it wasn’t the same. I was now struggling with figuring out if I could attend Mommom’s funeral and pay respect to her without jeopardizing my health and safety. After talking with my doctors, they gave me permission to travel the 3 hours in each direction so I could attend her funeral as long as I took the precautions they strongly recommended.

The discomfort and awkwardness people often feel towards grief has given rise to many platitudes. Personally, I don’t like it when people tell me, “Everything happens for a reason” or ‘It’s God’s will.” While I believe the person has good intentions, I don’t believe that time heals all things and that everything always ends up being fine. While I am learning to bear the weight of my grief of losing Mommom, I will never “get over it.”

Words don’t seem sufficient enough to express how much I I love and miss Mommom. She was the epitome of a strong, feisty, and graceful woman. Our bond is so special and it means so much to me that she and G have such a wonderful relationship too. She didn’t allow many people to cook in her kitchen, but she allowed him because he can “pick a bird clean” and “mash potatoes right.” I will always remember her unconditional love, her smile, our Yahtzee games, and family dinners at her house.

My brother, Mommom, Poppop, and me (1985)
Me in my wedding dress with Mommom (2004)

Less than a week after Mommom’s funeral I suffered an anaphylactic reaction. On G’s birthday of all freakin’ days. 😒 Less than an hour after arrival to the hospital, I was intubated and placed on the ventilator. This time was scarier than previous times because G wasn’t allowed inside the hospital with me due to COVID restrictions. Plus, during the intubation I was paralyzed but aware of the breathing tube going down my throat. AGAIN. This same thing happened to me in 2019. I was trying my damnedest to move any body part to alert the doctors but no success. Two days later I awoke in the ICU gagging on the tube in my throat. I wanted that somebitch OUT! The sedation had been turned off in order to test if I could breathe on my own, but I kept failing that test. The doctors just left me gagging on the tube for hours with no sedation. I kept writing on the dry erase board they gave me how pissed off I was with them and that I wanted the tube out. Several hours later, I finally passed the breathing test and the tube was removed.

At this point I wanted to contact G and let him know what’s going on but I couldn’t find my cell phone. It wasn’t in my hospital room. I also realized that my backpack with my medical supplies, shoes, and clothes were missing too. I told my nurse and doctors about all of my missing items and I was given the bullshit response of “sometimes these things happen.” No assholes. 🤬 I was knocked out in the Emergency room without being given the opportunity to secure my belongings. You didn’t allow my husband inside to secure my belongings either. So what the fuck did you do with my shit? At this point I am LIVID. I want to leave. I didn’t feel safe there. Not just because of my missing stuff. But also because they hadn’t given me any of my daily medications since I had been in the hospital, they blew my veins all to hell trying to get IV access and blood gas labs, and the traumatic events of being paralyzed during the intubation and gagging on the breathing tube for hours without sedation. I insisted on leaving and coming home where I could better manage my health care. Multiple doctors tried to convince me to stay but I refused out of concern for my own safety. I told the doctors that I would need an EpiPen to leave the hospital since my missing backpack contained my EpiPen. I was told they would have the pharmacy fill an EpiPen for me so I had to wait for that before I could go home.

My right arm one week after multiple IV lines and lab draws
My left arm one week after multiple IV lines and lab draws

As G is nearly to the hospital to pick me up, the doctor comes in to my room and asks me to have my husband bring an EpiPen from home because she claimed their pharmacy wouldn’t dispense an EpiPen for me. Now I was out of fucks with these people. Hell I was fuck bankrupt at that point. So I had to call G and ask him to turn around and go home to get an EpiPen for me so I could leave this hell hole. An hour later, G arrives with an EpiPen to take me home-with no cell phone, shoes, backpack with medical supplies, or clothes I wore to the hospital. G had been in contact with security about my missing items but no one had been able to locate any of them by the time I left the hospital. A few days later (after several phone calls, emails, and a social media posting) ALL of my missing items were found and returned to me. Thankfully I have been slowly recovering and improving since I left the hospital with my home breathing treatments and medications.

So there’s the 411 on what’s been going on in my neck of the woods these last few months. Now that I can see with my glasses and I am moving through the pain of losing Mommom and my hospitalization, I am looking forward to blogging again. I hope that you will join along for more delicate and brutal tidbits! 😃

Self-Care Is Not Selfish

There are a lot of things causing anxiety these days. We live in a complex and stressful world full of uncertainty right now. Will the COVID-19 vaccines provide the immunity needed to help us? Will there be more senseless violence at the Presidential inauguration this week? Our teachers and students are stressed as they navigate the constant changes and challenges of online education. Our healthcare workers (both front line and behind the scenes) are pulled and stretched in every direction trying to help patients. Many people are struggling financially. We’re constantly plugged in to technology and yet are more disconnected from each other than ever before.

So how do we help ourselves ride the inevitable storms that come our way? How do we handle daily chaos without feeling overwhelmed? We all know that we should make our health and well-being a priority. But we seem to make excuses as to why we don’t take care of ourselves. So what’s the problem? Lack of money, lack of time, lack of resources, lack of awareness, lack of motivation. We may feel disheartened to “fix” our life because we think there are too many problems to tackle. But we don’t have to completely overhaul our lifestyle in one month, or even one year, to make a difference. We just have to take one step forward right now.

Practicing self-care provides stress management techniques to help us cope with life’s challenges. If you have been following my blog you know that I live with several chronic illnesses. Managing my medical conditions can be quite stressful, especially when I am hospitalized. I recently spent a week in the hospital over the new year due to a severe asthma flare. It sucked ass. None of the hospital doctors could reach my asthma doctor or anyone on her team for treatment recommendations. I had to call every time I needed to go to the bathroom because I was hooked up to the heart monitor and my bed alarm was turned on to prevent me from getting out of bed unattended. I had to call for my insulin with every meal. I had to call for the respiratory therapist even though I had breathing treatments scheduled at regular intervals. I was stressed out because I felt like I had lost my freedom and I thought I could do a better job managing my care at home.

On top of all that, the hospital team wanted to shove a camera down my throat to look at my vocal cords because my voice was intermittently hoarse. I have had this done a few times with my ear, nose, and throat doctor to monitor the size of a large polyp. It always causes swelling in my tongue and throat afterwards due to my hereditary angioedema which requires treatment. I refused to do this scope while I was in the hospital since I just had one done 3 weeks before and the hospital didn’t stock the medication needed to treat my hereditary angioedema. We already knew that my vocal cords don’t close all the way because they have become very thin as a result of all the prednisone I have been on. This gap in my vocal cords is why my voice is intermittently hoarse. SIX different doctors kept pushing me to consent to the scope. I felt bullied but I stood my ground. I was pissed that these doctors wouldn’t listen to me and understand that there was no benefit to shoving a camera down my throat when we already had an explanation for my hoarseness.

So what do I do to calm the fuck down when I feel like a hostage held in the hospital? How can I practice self-care while hospitalized where I have limited resources? I do deep breathing exercises, look at pictures and videos of my kitties on my phone, watch TV shows that make me laugh, and look up corny jokes online. Here’s my favorite joke right now: Is buttcheeks one word? Or should I spread them apart? 🤣😂🍑

Now that I am managing my health at home again, my self-care activities have expanded. I enjoy watching our cats run around the house like wildebeests, listening to my favorite music, pigging out on comfort food, tending to our plants and orchids, and taking long hot showers. There’s nothing more refreshing than washing the hospital stank off!

It’s not selfish to take care of yourself. Don’t put off self-care for later because later will never come. We have to make time now for what’s important and self-care should be a priority. It can help you transition from simply existing to living and experiencing everything this world has to offer. Which would you rather be doing? 

Dear Amy

No this is not a “Dear John” letter. I am not breaking up with myself. 😄 Recently I read a fellow blogger’s post where she wrote a letter to her future self. I enjoyed reading it so much that I wanted to do the same. Thank you Olivia from olivialucieblake for inspiring me to do this exercise. 😀

Dear Amy,

You have survived so much. Your body has been put through the ringer and yet you have come out the other side. You conquer pain daily and don’t allow it to hold you hostage. You have countless scars and bruises but you still keep fighting and trying for a better quality of life.

You have made huge strides in learning about letting go and patience. Trivial things that used to piss you off don’t matter anymore. Growing orchids has proven to be a great lesson in patience. Watching new buds bloom after finding the right balance of watering, sunlight, and pruning has brought a lot of joy and excitement to your life. Seeing these exquisite flowers in the windowsill every day, especially on days where you don’t feel beautiful, always puts a smile on your face.

And then there’s Prednisone. The one thing you wish you could eliminate from your daily life. What a fucker. It has caused your swollen face, your hair to fall out, purple stretch marks, your belly to feel hard and swollen, your need for daily insulin, and fast growing cataracts in both eyes. Yet you put up with all of it just to be able to breathe. As much as you hate prednisone, you recognize that it’s necessary in order for you to live and breathe. You can power through the daily shots of insulin, cataract surgery, and body changes for the blessing of taking a breath. I hope one day you won’t need as much of this ass hole medication to breathe, but until that day you will have to peacefully coexist.

Sure there are moments where you cry, lose your shit, eat your feelings in junk food, and wish life were different. Who would want this life of hospitalizations every few weeks to months, daily breathing treatments every 3-4 hours even overnight, taking 22 medications every day, daily needles with glucose checks and insulin shots, and giving yourself a home IV treatment as your face, tongue, and throat are swelling? But this is your life. And I accept it. I’m not afraid of it. I don’t hate or resent it. Some people might think I am crazy for saying that. But through every hardship you have endured, it has become clear that you are a tough cookie. Mmmm cookies. Especially with milk. 🤗🍪🥛 Sure you bend, bruise, crack, or shatter at times. But you always bounce back ready to take on the next hurdle. It may not be very graceful or in the time frame you want, but you are still resilient.

My greatest wish is to be able to travel again. I miss seeing and experiencing different parts of the world. I know it would take a huge coordinated effort to safely travel again, but it would be worth it to be able to go to Iceland or relax on a beach in Cancun again. I would also like to go to be able to lay down on massage table long enough to get a massage again, take a yoga class outside, or walk around my favorite parks and gardens without difficulty breathing.

I don’t necessarily want or expect to be “normal.” I wouldn’t even know how to define what normal is. I just want to be me with a better quality of life. I don’t want to remain confined to the inside of my home for the rest of my life simply managing my medical conditions. I don’t expect a miracle to cure me. But I am hoping that with time, the right combination of treatments can be found that will allow me some freedom.