Cop A Feel

Who wants to cop a feel? No I’m not talking about fondling boobies. But I will admit to mine getting manhandled last week at my first mammogram. It wasn’t that bad though. Lots of pressure but no pain. Enough about my boobs. I’m actually referring to feeling annoyed by our loved ones. I know, sort of a taboo subject because no one likes to openly admit to feeling this way. Whether it’s our spouse, family members, partner, friends, or coworkers, do you ever find yourself feeling irritated by EVERY. LITTLE. THING they say or do?

Nurturing our relationships requires time, attention, and effort. In the early stages of a romantic relationship, we’re ALL ABOUT the other person and see only the best in them. We’re drunk in love. We don’t see the less wonderful qualities that might annoy us later on. But then time passes by, and it’s easy to become complacent until we are no longer appreciating and truly connecting with those closest to us.

When we constantly complain about our loved ones, all we see are their flaws. Annoying little things, which might not have bothered us before, can become quite perturbing. These feelings can snowball until your loved one’s habits drive you bat shit crazy. If you think about it, anyone can become really irritating if we only focus on their flaws and annoying behaviors.

Small things such as not calling or texting me when they said they would, interrupting me when I am talking, or not putting their dirty drawers in the hamper have become bigger issues. I found myself forgetting about the loving and caring things they did and instead focusing on my disappointment and irritation. I would focus on what was wrong in my relationships until all I could see were the problems, not the people. These feelings can chip away at the intimacy and joy in any relationship. If it continues for long enough, it can feel like your relationship is stuck in a rut or it might break altogether.

I have a tendency to expect too much from certain people in my life. I have high standards for myself and often expect others to hold themselves to similar standards. I don’t aim for perfection but I do strive for progress. We are fallible human beings after all, so we can never achieve perfection. Although I don’t expect my loved ones or myself to be perfect, I sometimes find it difficult to accept their flaws and mine.

Fairy tales, movies, TV shows, and social media all contribute to painting this picture of a perfect life. These unrealistic expectations often lead to a lot of disappointment, and can be a huge threat to relationships.

Not one single person or relationship on the face of this planet is perfect. We set ourselves up for disaster when we expect our loved ones to read our minds, understand all of our emotions (even when we don’t understand them ourselves,) or to always make us happy. These pressures are just unrealistic.

When I was younger, I expected people to know why I was mad or why my feelings were hurt without even telling them. Looking back now, it was like I expected them to have this superpower that didn’t exist.

We often look for happiness outside of ourselves and expect other people to make us happy. But the truth is, the only person who can make you happy is you. Happiness lies within you. It’s not somewhere out there. Ultimately, you are not responsible for other people’s happiness and they are not responsible for yours.

Good relationships thrive on respect, support, trust, and patience. There will be times of sorrow and triumph, peace and chaos, and conflict and joy. Relationships do of course change over time, but that doesn’t mean they have to change for the worse. The first sign of a problem does not mean the relationship isn’t good. We need to remember that we are all imperfect human beings just trying to do our best.

Badass Warrior Queen

Badass women are not raised in comfort. We are not formed with ease and grace. We are made of fire and storms. We are made of the stuff that should have broken us but didn’t. -Brooke Hampton

I am often asked “How do you do it?” Or I am told “I don’t know how you do it,” or “I don’t know what I would do if I were in your shoes.” But the truth is, you could do it too. I don’t have superhuman powers. I put my underwear and pants on one leg at a time just like everyone else. Living with multiple rare medical conditions can be as hard for me as you imagine it might be for you. I wasn’t automatically given the knowledge and strength to cope with this situation.

Some days it’s hard. REALLY HARD. There are constant days of doctor appointments, breathing treatments, medication pick ups, insulin adjustments, ensuring I have enough medical supplies, not to mention the hours spent on the phone correcting medical billing errors and answering emails to keep my doctors updated.

I know better than to compare myself to others, but I would be lying if I didn’t say it feels like a kick in the nards watching other people do normal daily activities. It’s hard not to think of all the things I “should be” doing. I “should be” working, I “should be” running errands, I “should be” cleaning, I “should be” exercising. Day to day stuff often gets pushed aside. If I sit still, there is something that isn’t getting done in that moment, and I know it. And sometimes I feel guilty about it.

I don’t get out much and I don’t have visitors often. Friendships and relationships can be hard to develop and maintain when so much of my life revolves around my medical care. That doesn’t mean I don’t long for those connections, though. I am thankful for the people who join in and are a part of my world.

I see people traveling for vacation and I can’t. I miss that. I see people spending their days outside enjoying the beaches and parks and I can’t. I miss that. People are able to get vaccinated to protect themselves and others and I can’t. People are starting to resume all the freedom their healthy lives provide and I can’t. Not yet. Life can be overwhelming and emotional. My mind, heart, and body get tired at times. I won’t let that stop me though.

I am reminded that this is my journey and there are milestones to celebrate. For the first time in over a year I was able to enjoy dinner out in a restaurant. This is really special for me because it shows just how much progress my health is making, especially where I was just on the ventilator in the ICU exactly 2 months ago.

It’s still an adjustment living with and managing multiple medical conditions. It’s a lot of work that is time and energy consuming. Sometimes I have to remind myself to shift my perspective. Life is too short to waste it moping about the hand of cards I have been dealt. So cheers to turning 40 and accepting that even though I Look WAY different on the outside (thank you effin prednisone 🙄), I am still the same feisty, resilient, and badass warrior queen that I always have been 😁

You Repeat What You Don’t Repair

There has been a lot of joy in traveling, laughing at fart jokes, sorrow over loved ones passing away, and loving our kitties over the 18 years that G and I have been together. But there have also been things that he would say or do that left me feeling a bit perturbed at times, like leaving cabinet doors open or using “book words.” That’s when G would say a five dollar word that I don’t know the meaning of when a basic word would have sufficed. Of course things aren’t always peachy keen, and when there has been conflict, my responses definitely haven’t been constructive. Quite often, Mount St. Amy would blow and I would spew out whatever fuckery came to mind in the heat of the moment.

Logically, I knew better than to blow up. So why wasn’t I doing better? Simple. I didn’t want to. At that moment. Of course I regretted my emotional vomit later. But in those heated moments I didn’t give a fuck. All the logic in the world didn’t matter if I lacked the intention to do better during an argument.

We have a tendency to respond to hostile behavior with even more hostility. Whether that’s giving someone the silent treatment, giving them a taste of their own medicine, or cussing someone out (if you want a cussin’ I’ll give you a cussin’! 😉) These actions can create a cycle of anger, judgment, and defensiveness. Often it leads to conflicts that spiral out of control, making them harder to resolve. This level of hostility is destructive, yet we’re all guilty of it at some point, and have probably felt justified in doing so. To get past conflict, we need to want to understand each other more than we want to hurt each other.

In the middle of an argument we may feel the need to defend ourselves, especially if we feel the other person isn’t hearing what we are saying or is dismissive of our feelings. So often we listen to respond instead of listening to understand. It can seem like the other person has the power to hurt us, making us feel insecure. I don’t like how vulnerable I feel when someone says something that is hurtful or disrespectful towards me. It makes me want to retaliate against the MFer. Is that mature? Noop. Helpful? Absolutely not. Does it feel good to use every derivative of the F word in one sentence? Aww hell yeah!

I want my relationships to be made of trust, honesty, and transparent communication. Relationships where we each have the courage to express ourselves without fear of retaliation and would listen to each other with an intent to understand rather than judge. One where we would have compassion for each other’s faults and work to build each other up rather than tear each other down, even when we are upset.

I know that my current responses to conflicts are…shall we say…shitty. So I am trying to shift my intention. Instead of protecting my ego during an argument, my intention is to respond in a constructive way. It requires me opening up when I feel vulnerable. Taking responsibility for my part, even when I want to dump the blame on the other person. Trying to listen with compassion when I feel frustrated or fed up. I don’t want to stay in the vicious cycle of trying to prove who is right and who is wrong. After all, you repeat what you don’t repair.

Waiting For the Other Shoe to Drop

Your day is going along a little too well and you don’t trust it. You just know something bad is going to happen. And then the shit hits the fan. Right on cue. 🙄 I refer to this as the fuckening. Some people call this “waiting for the other shoe to drop.” It can be disheartening to feel like we can’t catch a break.

I will be the first to admit that I expect a fuckening WAY too often. If I have been out of the hospital for a while, I start to worry about how I am likely to end up back in the hospital at an inopportune time. If we have plumped up our savings, I wonder if we’ll have an unexpected large expense that will reduce our nest egg. If we have a car or home repair to make, I expect something else to break needing repair or replacement, If I am flying on an airplane and I pee right before boarding the plane,I just know that I am going to have to pee again when the drink cart is blocking the way to the toilet.

Life changes constantly and there is a rhythmic dance between joy and pain. In one moment our situations can shift so drastically that we feel like we’re falling ass over teakettle. Expecting that every day will be wonderful and flawless is both naive and unrealistic. But anxiously awaiting some sort of tragedy is not beneficial to our wellbeing either.

Waiting for the other shoe to drop is this tricky way of depriving ourselves from feeling good now because we are nervously anticipating something bad will happen in the future. It’s almost as if we are inviting something negative into our life to neutralize the positive feelings. Life will bring cycles of suffering and beauty, pain and happiness, crisis and comfort. We do our best while riding these waves of feelings, trying not to get stuck in a pattern of overwhelming stress.

So can we avoid the chaos? Noop. Not a chance in hell. But here are some techniques to help quiet the nagging voices that suggest disappointment is lurking around the corner.

Realize that worrying is pointless

We need to accept that we can’t possibly prepare for all potential situations. There are umpteen thirty-leven possible challenges that could happen in life at any given moment and there is no way to anticipate all of them. Don’t waste your time worrying about “What ifs.” Time is nonrefundable. Use it with intention.

Stop downplaying yo’ self

When you downplay your own accomplishments and abilities, you are perpetuating the belief that something negative is going to happen. You don’t want to brush off your victories as “being lucky” or “they’re no big deal” when you put in the hard work. Instead of worrying about whether or not you are good enough, start trusting in yourself and believe that you have what it takes.

Focus on the present

The beauty of being present is that, by definition, you can’t be anywhere else. When you choose to be in the moment, thoughts about possible bad things happening in the future may enter your mind, but you can kick their asses to the curb.

Be Logical

Sometimes our thoughts can run away from us, going full steam down a hill that we know isn’t logical or helpful. Learning to accept that sometimes life is uncomfortable can reduce the fear of the unknown.

Our lives are in flux and it is inevitable that something unfortunate will happen at some point. We don’t know when or where, but worrying about things won’t make them go right.

5 Favorite Things About Where I Live

My blogging friend Shelly from growingwithspawn recently wrote a blog post about her favorite things in her hometown of Johannesburg, South Africa. I enjoy reading about another part of the world and seeing the similarities and differences to where I live.

I originally grew up in Salisbury, Maryland. It’s a small town on the east coast of the United States. I always wanted to move somewhere else when I had the chance and so I moved to Baltimore, Maryland when I was 21. I have lived here in the Baltimore area for nearly 19 years now. There are lots of things I like about living here, but here are a few of my favorite things. 🎶😀

1. Delicious Local Food

You know I love me some good ass comfort food! Nothin’ takes me from hangry to happy quite like chowing down on something I have been craving. People around Baltimore know how to put their foot in it! Here are a few of my favorites around here:

Chicken and waffles from Connie’s Chicken and Waffles
Warm apple cinnamon or banana nutella crepes from Sofi’s Crepes
Spinach quiche and pastries from Bonjour bakery
Cornmeal fried oysters, Asparagus, Softshell crabs, and Pan Seared Sea Scallops from Charleston

2. Nature Stuff

There’s a lot of free or inexpensive attractions around Baltimore. It makes me happy when I am able to get out of the house to visit these places.

Rawlings Conservatory: they have a Mediterranean room with citrus trees, a tropical room with a koi fish pond and tropical flowers, a cactus room, an orchid room, and a palm tree room. You know how OBSESSED I am with orchids!
Cylburn Arboretum: there are lots of hiking trails, trees, wide open areas for you to walk or run, and a mansion. My favorite time of year to go here is in the fall to see the leaves changing color. 🍁🍂🌳
Sherwood Gardens: beautifully landscaped garden in a residential neighborhood where you can walk around or picnic. The highlight is the tulip display each spring.🌷
Ladew Gardens: there are umpteen different types of gardens (a rose garden, iris garden, white garden, pink garden, yellow garden, Victorian garden, the list goes on.) There’s also a 1 mile nature trail, butterfly house, and mansion. My favorite is the yellow garden. There’s a water fountain and when the sunshine hits that garden with the Japanese maple tree just right, it’s picture perfect and so peaceful.
Maryland Zoo: There’s lions, and tigers, and bears, Oh my! But there’s also a penguin exhibit, flamingos, zebras, and rhinos. I even got to feed the elephants one day! 🦁🐯🐻🐧🦩🦓🦏🐘

Cactus room at Rawlings Conservatory-Of course the child in me thinks these look like dig ole hairy bicks 🤣🍆

Leaves changing in the fall at Cylburn Arboretum

One of the hiking trails at Cylburn Arboretum

Azaleas in the Garden of Eden at Ladew Gardens

Me feeding an elephant at the Maryland Zoo 😀

3. Funny Port a potty names

Need I say more? How can you not laugh, chuckle, or tee hee at these? 😁🤣

A flush away
SOS
Bobby’s potties
Don’s Johns
Gotugo

4. We have 4 seasons

Call me crazy but I love experiencing all four seasons every year. Although many times in Maryland the weather can feel more like disgusting hot and humid or colder than a witch’s nipple without much difference in between. Our spring and fall don’t last long and we tend to get sick and tired of how long winter and summer last. Mother nature has a hard time making up her mind about the weather in Maryland from one day to the next. It can literally be 80 degrees one day in February and then 35 degrees the next. Here’s why I like having all four seasons:

Spring: Blooming flowers! Azaleas and hydrangeas are my favorites. We have lots of these in our yard! 😊💗
Summer: Vibrant colors everywhere, ice cream, and pool time
Fall: Looking at the leaves changing colors and riding around in my 4runner with the sunroof open, the cool breeze blowing in my face and hair while rocking out to music
Winter: Watching the first snowfall coat the trees and house, drinking hot chocolate out of my cupcake poot mug, and snuggling under warm blankets with kitties on my lap ❄ 🐈🐈‍⬛

5. Great access for traveling

I love to travel! Although it’s been a few years since I have been able to travel due to COVID restrictions and my health. But I am REALLY hoping that within the next 6 months to a year G and I will be able to take a vacation. Here’s why I think living in Baltimore is great for traveling:

Multiple international airports within a 90 minute drive
Cruising out of Baltimore
3 hour drive to the beach
Accessibility to bus and train stations as well as multiple interstate highways for driving destinations

Well that’s it in a nutshell folks. Where do you live and what are things you like about it? I’d love to hear about your neck of the woods!

Purgatory of Indecision

Sometimes in life there is a pivotal moment when you know that you just can’t keep going on the way you’ve been living. Something’s got to give and you have two options: shit or get off the pot. Choosing between making a change or staying where you are can feel daunting, so you find yourself trapped between the two, in a purgatory of indecision.

The prospect of change requires us to take an honest look at ourselves and do things we might be afraid to do. We have to take a leap into uncharted waters, unsure if we’ll sink or swim. This can easily entice us to stay in our comfort zone. But if we can’t bring ourselves to change, we risk living a life of misery, dysfunction, or regret. You may feel like you can’t stay where you are, but you’re too afraid to move forward. You remain stuck in this purgatory of indecision.

As a teenage girl and into my twenties, my plan was to become a pharmacist. I loved math and science, I wanted to help people, and it would be a secure, stable career. I started working as a pharmacy technician a few months after graduating from high school and continued this while going to college. After I completed all the prerequisite courses, I applied to a few pharmacy schools. Imagine my surprise and utter disappointment when I read rejection letter after rejection letter. I didn’t understand why I wasn’t accepted. I had excellent grades, a good PCAT score, and pharmacy experience. It seemed unfair. I felt ashamed and embarrassed. Why wasn’t I good enough to be accepted? How could I have failed? What in the hell am I going to do with my life now? I had busted my hump for years to meet my goal of becoming a pharmacist and now it was being flushed down the shitter.

One of the pharmacy schools I had applied to sent my information to the University of Maryland Department of Medical and Research Technology, so they sent me information about their program. When I read through it and saw Blood Banking as a specialty, I had that “Aha!” moment. I had a special interest in Blood Banking after I needed a blood transfusion during surgery to straighten my curved spine in 2004.

I was still working as a pharmacy tech after getting rejected by multiple pharmacy schools and saw the direction the pharmacy profession was going in. I didn’t like that insurance companies dictated so much of patient care. They’ll cover one type of insulin but not another similar insulin. They won’t pay for this asthma medication but they’ll pay for an alternative. And they change their mind every year on what list of medications they choose to cover. I don’t believe an insurance company knows better than a patient’s doctor what medication works best for the patient.

So what do I do now? Do I keep trying to apply to other pharmacy schools or pivot and apply to med tech school? I decided to get off the pot and apply to med tech school. It provided the same reasons I wanted to become a pharmacist. I loved math and science, I wanted to help people, and it would be a secure, stable career. Plus, I had this personal connection with Blood Banking after my blood transfusions. I was both excited and relieved when I was accepted into the program and worked as a Blood Banker for 11 years after graduation.

The purgatory of indecision is an awful place to be. It is fraught with doubt, shame, anger, and overwhelming amounts of fear. Despite that, sometimes it still isn’t enough to push us in a particular direction. Our fear acts as a dysfunctional voice that eventually grows louder and can become the only one that you hear. Fear, along with self-doubt, whispers “you’re not good enough” or “you can’t do anything right.” It may even convince you that you’re inadequate, unlovable, or a failure. It can feel like there is a constant tug of war going on inside of you.

If we choose to not listen to that dysfunctional voice, then we can subdue it. When it says we aren’t good enough, we can choose to believe that we are enough. When the voice tells us we can’t do anything right, we can choose to know that we are doing the best we can and that is always right. When that pesky voice taunts us with feelings of inadequacy or failure, we can choose to have trust in our own potential. And when the dysfunctional voice tries to convince us that we are unlovable, we can decide that we are worthy of love.

We don’t have to remain stuck in unsatisfying situations. And we don’t need to make big changes all at once in order to live fulfilling lives. Change can be scary and uncomfortable as fuck. But small shifts can lead to huge transformation over time. The way out of the purgatory of indecision is to simply get started and to keep on going.

The Struggle Is Real

Life is made up of ebbs and flows. Although at times it can feel more like a clogged up shitty toilet or a tsunami. We can spend an insane amount of time comparing our lives to others. We look at those who appear to have it all together and wonder if they know what it’s like to struggle. We might be envious of their seemingly sweet trouble free life. It can feel like we are banished to a dark abyss while everyone else happily goes about their lives. We may question if we did something wrong to warrant this “punishment.” It’s easy to ask yourself “Why me?”

After my first anaphylactic reaction in July 2018, I believed I was going back to work. But as the weeks turned into months, it became clear that I was not going to be able to return to work. No work place could guarantee an environment free of mercaptobenzothiazole. Because that shit is EVERYWHERE. I can’t be in contact with common things like rubber bands, tape, or adhesive labels because they contain this chemical that I am highly allergic to. In November 2018 I had another anaphylactic reaction after using a pen that used to have a rubber band around it. Not currently on it. USED TO BE ON IT. That’s how sensitive my body is to this chemical. Fucking crazy! I continued to be hospitalized every few months for anaphylactic reactions, severe asthma, and/or hereditary angioedema flares. In 2019 I spent 22 days total in the hospital over 6 admissions. In 2020 I spent 30 days total in the hospital over 6 admissions. So far in 2021 I have spent 10 days in the hospital over 2 admissions. Many of these days were spent on the ventilator in the ICU. It’s a very weird and unsettling feeling to wake up after being sedated on a ventilator not knowing what day it is or how much time has passed.

It was a tough pill to swallow realizing I wouldn’t be able to return to work. I didn’t expect to become disabled at age 37. I had always been this determined, independent, and sassy lady who could multitask like nobody’s business. Now my world was flipped upside down and I struggled at first with how to fill my time and feel productive. To this day I still battle with feeling like I am not as productive as I used to be or even would like to be. I equated productivity with physical activity. But I have learned that productivity can be mental and not solely physical. While most of my time each day revolves around my medical care, I find ways to feel productive by learning French and Russian, growing and maintaining our orchids and house plants, and writing my blog.

My life is truly like a roller coaster ride. One moment things are going well, my health improves a bit, and there’s a glimmer of hope that there will be some normalcy as I coast along the track. The next moment, all hell breaks loose and I’m zooming down the roller coaster track screaming my guts out. I don’t have a clue what will be thrown my way, but I know I will accept life as it comes. I don’t try to understand everything, because sometimes things are not meant to be understood, just accepted.

It’s easy to become so absorbed in our own anguish that we fail to recognize others are also going through hardships. Focusing on our struggles is like a vortex that isolates us and makes us feel awful. We don’t need to offer advice or solutions to those who are struggling. But we can flash them a toothy grin 😁 or simply be there to spread some extra love. I try to be more cognizant of other people’s experiences of trauma and grief. It’s a good reminder that while things in life might have been different, it doesn’t necessarily mean they would have been better. We all experience suffering and heartbreak. No one in the world is immune from getting hit with some kind of pain, despite how happy and chipper they may appear on the outside.

There is another side to everyone’s life that you may never actually see. So if you catch yourself scrolling through social media and wondering why your life isn’t going as smoothly as someone else’s, remember that there are people looking at your life wishing they had something about yours.

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! 😃

Rare Disease Day

Many of you know that I live with 2 rare conditions: Hereditary angioedema and Mast cell disease. They aren’t pretty and they aren’t flattering. But they are real.

I haven’t wanted to take or show many pictures of myself because of how different I look. I don’t recognize myself and sometimes I feel embarrassed by my appearance. I was afraid of being judged by others the way I have been judging myself.

But since today is Rare Disease Day and it’s about spreading awareness, I am sharing some unpretty, unflattering, but real pictures of me living with these conditions.