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. πŸ™„ 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. πŸ˜’ 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! πŸ˜ƒ

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 β€œfix” 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? πŸ€£πŸ˜‚πŸ‘

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? 

Oh It’s Real Yar Shug

I am not always graceful or dignified. Especially when it comes to handling my body or my medical conditions. Despite being grateful for many things over the last few years, I have never actually thanked my body. In fact I blame it. I have had to grow accustomed to living through pain and discomfort daily or I would never get out of bed each morning.

The last 6 weeks have been a rough time for me medically. After two inpatient hospital admissions my asthma continued to flare at home. I was taking crazy high doses of prednisone and doing breathing treatments at home every 2-3 hours hoping to keep me out of the hospital for a third time. During this time my blood sugars spiked to the point where we had to start me on daily 24 hour insulin. That sucks balls but breathing is more important than sticking myself with a needle daily. Besides, I’m already used to self-administering my IV treatment for my hereditary angioedema so an insulin needle is nothing!

Despite the mega prednisone dose and frequent nebulizer treatments, my breathing kept worsening to the point where I would get so out of breath just walking upstairs or going to the bathroom. I would have to sit down afterwards for several minutes and catch my breath. I couldn’t talk in complete sentences. I started coughing up thick grey and green shit too.

Finding the balance of when it’s time to go to the hospital versus continuing home treatment is not a clear cut decision for me. We have to weigh the risks of exposure to mercaptobenzothiazole, catching some nasty infection from being immunocompromised, or exposure to coronavirus over the potential benefits of treatment the hospital can provide me that I don’t have access to at home like IV magnesium and nebulized epinephrine to open up my airways.

We finally made the decision to go to the hospital for treatment after my doctors told me “You’re playing with fire Amy!” Due to coronavirus restrictions, NO ONE (not even your spouse or family members) is allowed inside the emergency room or hospital with you. I waited 3.5 hours in the emergency room waiting room for a treatment bed despite my breathing status because the hospitals are that overloaded. And I was the priority patient in the waiting room due for the next bed! By the time I was called for a room, the nurse had to assist me and call for help because I had so little air movement in my lungs. I was immediately given nebulized epinephrine, multiple albuterol treatments, IV magnesium, and IV steroids to open my airways. They continued double albuterol treatments every 2 hours and told me I was being admitted to the intermediate care unit just below ICU.

Due to the higher level care room I required, I remained boarded in the emergency room for the next 30 hours because so few of those rooms are available compared to a regular room. I got virtually no sleep and was receiving nebulizer treatments every 2 hours plus IV steroids every 6 hours. I don’t know how anyone could sleep on a stretcher with no pillow anyway.

Over the next few days my breathing began to make slow steady progress. But the high doses of IV steroids made my blood sugars even higher. Now we had to start administering insulin after every meal in addition to the 24 hour insulin I was given each night after dinner. My arm looked like a pin cushion! πŸ˜„

As a patient in the hospital they also give you daily shots in the belly to help prevent blood clots. These fuckers sting like hell and often bruise me. The first shot left such a nasty bruise that it looks like a birth mark! The following day it ended up bleeding through my gown so we had to bandage it up for a little while.

Bleeding bruise after shot for preventing blood clots

My doctors originally told me to plan on being in the hospital for one week which I wasn’t thrilled about. But since this was my third admission in 6 weeks I also didn’t want to be discharged too early again only to end up back a fourth time. The hospitals are overloaded with patients and COVID pop up units are occurring all over the hospitals due to the rising numbers of positive patients. This is spreading all of the healthcare workers thin and negatively impacting patient care. My hospital stay was extended by a few additional days because healthcare workers missed scheduled breathing treatments for me multiple times. This caused huge setbacks in my breathing so we had to spend three days in a row rapidly increasing medications and nebulizer treatments to get my respiratory symptoms stable. After a 10 day hospital admission we finally got my breathing stable enough for me to safely come home.

There is no cure or treatment end date I am working towards. My conditions are a permanent part of me. As much as I hate to admit it, they control so much, including my appearance. The pregnant looking belly, swollen distorted face, buffalo humps on my neck and shoulders, the sideburns, my hair thinning and falling out, and bruises everywhere. I certainly do not meet society’s conventional standard of beauty. There’s sort of a pirate quality to my appearance. Oh it’s real “Yar” shug!

Swollen from high dose prednisone

While I know that I don’t always appreciate my body, I am realizing how much I actually ask of it. I push it every day in spite of my diseases and it still continues to recover. So far, no matter what obstacles it faces or appearance changes it goes through, my body continues to allow me to see another day. So today, I am grateful for this new perspective, for the deep breaths I can now take, and for the reminder of what a blessing it is to be alive.

Gratitude From A to Z

It’s that time of year where comfort food is king and “A Charlie Brown Thanksgiving” is playing on the television. People tend to reflect on the past year and express gratitude as they come together with loved ones. But this year will look different around the world as we enter the next wave of this coronavirus pandemic.

About a month ago I read a blog post by Soni from Soni’s thoughts where she listed her favorite things from A-Z. Click here to read her post “My A-Z Fav Things!!!” It inspired me to do a similar post on things I am grateful for since Thanksgiving is right around the corner.

A= Air conditioning Cuz hot humid Maryland weather and hot flashes from the prednisone and hysterectomy make me sweat like nobody’s business and that’s just gross.

B= Blogging community The support and encouragement from bloggers I have met around the world gives me warm fuzzies πŸ€—πŸ’•

C= Charmin ultra soft toilet paper No other toilet paper will do. Period.

D= Delivery people 🎢 They work hard for the money. So hard for it honey. They work hard for the money so you better treat them right! 🎢 Seriously, they’re a lifesaver to me delivering my medical supplies, household items, and clothing to my house so I can remain safe at home.

E=Epipen Why thank you EpiPen for always saving my life during an anaphylactic reaction!

F=Face masks Protecting us from coronavirus, flu, and other illnesses

G= Glenn G has stood by my side throughout out our 16+ years of marriage. We have tested the “in sickness and in health” part of our vows more often than I’d like and I am grateful that he still chooses me as his wife every day.

Classic G and A shenanigans πŸ˜„

H= Home Grateful that not only do I have a roof over my head, but that it’s a home safe for me and free from all of my allergies

I= Insurance Not everyone has access to medical or dental insurance. I am EXTREMELY fortunate to have excellent medical and dental insurance coverage.

J= Jackets Protect me from mother nature’s wrath of rain, cold, wind, or snow

K= Kitty love

L= Laboratory scientists Without them your doctor is just guessing at your diagnosis

M= Memories Traveling, going to grandma’s house, all the good shit

N= Nebulizer You help me breathe

O= Orchids Instant smile watching my orchids grow

P=  Pen & paper I like having a backup when technology fails. It has also come in handy when I needed to communicate while on the ventilator and couldn’t speak. I’m not gonna let a tube down my throat stop me from cussing out someone who needs it!

Q= Quiet Who isn’t thankful for quiet time? Besides a youngin.

R= Respiratory Therapists These people bust their hump to help my breathing every time I am at the hospital. They have done everything from nebulizer treatments to assisting with intubating and extubating me. I have really bonded with a few of them over the last couple of years.

S= Showers There is nothing like that first steamy hot shower to clean your ass after being in the hospital or traveling.

T=Teeth I have strong healthy teeth that can chew my food. And food is VERY important to me 😁 Not everyone is fortunate enough to have good teeth.

U= Underwear Specifically clean underwear. No dirty drawers up in here please.

V= Veterinarians They take care of my kitties at all stages of their lives and tell me how adorable they are πŸ˜ƒ

Tilly
Savina
Poovey

W= Water I drink it, swim in it, bathe in it, pee and poo in it, wash my clothes and dishes with it, and cook with it. We can’t live without it.

X= Xyzal It’s an antihistamine I take to help control my allergies.

Y=  You! If you are reading this post then you are a part of my life and I am grateful for that!

Z= Zippers They keep our clothes closed so we don’t expose ourselves and flash people.

So what are some things you are grateful for? Share with me your serious, silly, or sentimental thoughts in the comments below!

Looking Fear in the Face

Have you ever battled with a step stool and lost? I’m not ashamed to admit that I have. πŸ™‹β€β™€οΈ Okay, maybe there is a little embarrassment. 😬 After an unexpected hospitalization recently, I had to take a short break from blogging. But now I’m back so let’s get after it!

I needed to buy a taller step stool in order to take down the curtains in our living room to clean. We have 9 foot ceilings downstairs so our current step stool wasn’t tall enough for me to safely reach the curtain rods. The only stool tall enough in the store was made of metal and plastic. But there was a wrapping around the metal handle that was possibly made of rubber and could contain mercaptobenzothiazole. For those of you new to my blog, I am HIGHLY allergic to this chemical. So I VERY CAREFULLY held the step stool by the metal sides while wearing my gloves. But when I attempted to pull it out of the back of my truck to carry inside the house, I lost my grip and the rubberized handle fell on my forearm. Of course it would fall on an area of skin that didn’t have a protective barrier of clothing or gloves. FML! πŸ™„

Within minutes I was having an anaphylactic reaction. I immediately used my EpiPen, took benadryl and extra prednisone, did a breathing treatment, did an IV treatment for the tongue and throat swelling, and called my allergist. We were able to get the reaction under control for the time being. The next morning I woke up feeling worse and the reaction rebounded. That means my allergic reaction reoccurs without an additional exposure. This was nothing new to me. All of my anaphylactic reactions to mercaptobenzothiazole have resulted in rebound reactions within 24 hours. I treated myself again with home meds, breathing treatments, and another IV treatment for throat swelling hoping to avoid a trip to the hospital. But this time it wasn’t helping. My voice was becoming more hoarse, I was choking on food, and my skin was fiery red. So G took me to the hospital. That’s the last place I wanted to be. πŸ˜’

Thankfully the emergency room staff brought me back to a room immediately and started treatment. After some nebulized epinephrine, IV antihistamines, IV steroids, and breathing treatments, I was starting to improve. But within a couple of hours I rebounded again. So here comes a shot of epinephrine in my arm and more IV antihistamines. Again I start to feel better and my swelling really starts to go down. They even allowed me to eat some applesauce and a fruit cup after several hours. So now I am thinking the worst is over and that I am out of the woods. Oh Amy, haven’t you learned by now that your body is an ass hole?!

After 1st round of hospital treatment. Face still swollen and the nebulized epinephrine whitened the skin above my lips.
After 2nd round of hospital treatment. Swelling going down but chest still fiery red.

Several hours later things changed at the snap of a finger. My reaction rebounded AGAIN, this time worse than before. My throat was swelling so fast they were discussing intubation. Please! For the love of God! I don’t want to be intubated! I’ve been intubated in the past for anaphylactic reactions and it’s complete and utter hell. 😞 There aren’t enough cuss words in the universe to describe how I feel about it! I gag and fight to pull out the tube, so then I end up getting restrained. The medical team gave me another shot of epinephrine in my arm, more IV steroids, more IV antihistamines, more nebulized epinephrine, and humidified oxygen.

After 3rd round of hospital treatment I was put on humidified oxygen.

Three different doctors talked to me about consenting for intubation but I refused. For no reason other than fear. I know I can be a stubborn jackass at times, but I was scared shitless. I begged them all to give the meds a little more time to work. The scariest part to me wasn’t the idea of them shoving a tube down my throat and a foley catheter up my hoo-ha. I’ve done that more times than I care to count. It’s the thought of being sedated and not being able to stop someone from causing another anaphylactic reaction because they wore gloves containing mercaptobenzothiazole while taking care of me. Due to coronavirus restrictions, no visitors are allowed in the hospital-especially for immunocompromised patients like me. I can’t have G there speaking on my behalf or stopping people from coming in to my hospital room wearing the wrong gloves. Despite me providing signs about the gloves and wearing medical alert bracelets about my allergies and glove requirements, someone ALWAYS misses them and comes in to my room wearing the wrong gloves. I know that no one would intentionally wear the wrong gloves to cause a reaction, but the consequences are still the same.

Thankfully the extra epinephrine worked in just enough time that I was not intubated. Woot woot! I was kept on humidified oxygen for a while, and after a couple of days in the hospital I was discharged home. Who would have thought that a step stool could have kicked my ass? Step stool-1, Amy-0. 😳

The Lockdown Tag

Thank you BluntPathway for tagging me in “The Lockdown Tag!” I have really enjoyed following this blogger so far. Their honest writing often puts a smile on my face and a chuckle in my belly. πŸ˜€ If you have not had the pleasure of reading their posts, you can follow BluntPathway here.

So let’s get down to the nitty gritty, shall we? πŸ™‚ Here are my answers to the questions from BluntPathway:

1. Overall, how are you handling the quarantine? My life during quarantine hasn’t really been any different than before it. Due to my health conditions, I already had to take precautions of wearing gloves, masks, and distancing myself from people. It’s almost like the rest of the world now has a taste of my daily life.

2. Have you violated any of the restrictions? If yes, what rule(s) did you break? That’s a big fat noop! The consequences are dire for me if I played with that fire. πŸ”₯

3. What viral recipes have you tried during the lockdown? I’m an old fart so I don’t know what constitutes a “viral recipe.” πŸ˜† But I have tried my hand at baking cookies from scratch. I’m damn near 40 and finally used a stand mixer for the first time during quarantine!

4. What activities have you missed the most during quarantine? I miss going out to breakfast with my friends! Brekkie is the most important meal of the day so getting to combine that with my friends just makes it all the more delicious!

5. Do you wear a mask when you leave the house? Abso-fucking-lutely!

6. Are you an essential worker? If yes, what is your job title? Not anymore. I was a med tech in a hospital blood bank until I became too sick to work. But that was pre COVID-19.

7. How do you exercise during the lockdown? Mostly housework and walking as I don’t get out much and my respiratory symptoms severly limit what exercises I can do. I’ve also dabbled in yoga.

8. Have you subscribed to any new subscription services since the lockdown started? I did a free trial of Netflix during quarantine. But I’ll be damned if I will pay for more television that I don’t watch. I already pay for Hulu and that’s enough for me. It has all the juicy shows and ridiculous cartoons I love to watch!

9. What did your daily schedule look like before the pandemic started? I refer you back to my answer in question #1. 😁 My typical day includes learning French, breathing treatments every 4 hours, laundry, playing with Tilly, communicating with my doctors, and eating food that makes me happy. πŸ˜‹πŸ€—

10. Do you think that the pandemic is getting better or worse? Honestly….both. On the one hand, supplies are becoming more available, businesses are reopening, and people seem to be finding their “new normal.” But that doesn’t mean the risk of spreading the virus has diminished. On the other hand, I think people have become more complacent about the risk of transmission. Too many people don’t wear masks correctly in public and are coming in contact with people outside of their household without taking appropriate precautions. There seems to be this false sense of security that family, friends, and/or trusted individuals can’t spread the virus to each other.

11. What have you become grateful for during the lockdown? Toilet paper! My goodness…the way people bum rush TP (pun intended πŸ˜„) during this pandemic has left me squeezing my Charmin ultra soft a little tighter when I can find it in stores.

12. What do you think the world should learn from this pandemic so that things are better in the future? Our countries “reopening” does NOT mean that COVID-19 is no longer a threat. Just because you may not know someone who has been infected with or died from this disease doesn’t mean it isn’t real and capable of devastation.

Public health is everyone’s responsibility! There are a number of people who are more vulnerable to this disease (myself included) and are not capable of speaking up for themselves against those not exercising care in preventing the spread of this virus. It is very possible to contract coronavirus and unknowingly transmit it to someone else who dies as a result.

Your loved one or friend could be the one with a machine breathing for them, being fed through a tube, and all alone in the ICU. If we all work together, show some compassion to each other, wear our masks, and stay an appropriate distance from others, we can keep everyone safe!

Spicy Nuggs Volume 2

Spicy nuggs are back! And no I don’t mean Wendy’s spicy chicken nuggets. Although chicken nuggets are delicious. Seriously, how good is chicken?! πŸ—

Spicy nuggs is all about my intolerance for stupid ass people doing stupid ass things; AKA ninny behavior. It’s the kind of stuff you just can’t make up. So pitter patter let’s get at ‘er!

G and I had just left Hardee’s after chowin’ down on some cinnamon raisin biscuits and hash rounds. I notice a car traveling in the center highway lane with its LEFT turn signal on. Next thing I know I’m watching this fool merge into the RIGHT lane. Once they’re fully in the right lane, the driver THEN turns on the right turn signal. πŸ€¦β€β™€οΈπŸ€¦β€β™‚οΈ A bit late for that super chiefton!

There’s an intersection by our house with a 3-way stop. It’s not uncommon to wonder if drivers are going to stop at these stop signs based on the way they come flying down the hill. Recently G and I saw a woman haulin’ ass through this intersection while eating an Italian ice. Are you telling me that Italian ice was so fucking good that it prevented you from seeing and obeying the stop sign? I’ve seen people do all kinds of crazy shit while driving-applying makeup, trimming nose hairs, brushing their teeth, eating tacos, but I’ve never known an Italian ice to be the cause of shitty driving.

A student takes another classmate’s graded assignment and erases the other student’s name off the paper. The student then writes their own name on the assignment and gives it to the teacher claiming the teacher forgot to put their grade in the computer. The teacher realizes the name at the top of the paper is in COMPLETELY different handwriting than the rest of the paper. The teacher talked to the student who originally submitted the assignment and confirmed it was in fact their work. When the teacher realizes the other student is cheating, a meeting is scheduled with the student, their parent, and the department leader. The student and their parent deny any cheating. How much more proof do you need? A forensic handwriting analysis? 🧐 Get your finger outta your ass!

One Sunday G and I were going to eat some chicken and waffles. There’s a local place in Baltimore that really knows how to put their foot in it! Their chicken and waffles make you wanna say “I’ll have what she’s having!” πŸ˜„ Anyway we’re driving along and I see a lady wearing a fanny pack over her right buttcheek. She obviously took the term “fanny pack” literally. I noticed her midriff was exposed in the front below her crop top. Why would you wear a fanny pack over your rump if you can conceal your belly with it? πŸ€” Je ne comprends pas!

I couldn’t venture out of the house much over the last few months of the coronavirus outbreak but a recent trip to the pharmacy provided me this story. There was a woman in front of me in the pick up line wearing an exterminator mask. Yes. An exterminator mask. Inside the pharmacy. I could hear every breath she took like Darth Vader breathing through his mask. The woman repeatedly asked the pharmacy staff where Cold-EEZE (a cold medicine) was but no one could hear or understand her through the exterminator mask. Finally another customer understood what the woman was looking for and brought her a box of Cold-EEZE.

Shi Shi Shaw!

After my hip replacement surgery last June I received the bill for my surgery and hospital stay. I paid the bill in early July through the hospital’s online payment system. A month later I received the same bill again. I called the billing office to inquire as to why they are billing me again when I already paid through their online payment system. The billing office employee claimed they had no record of my payment. I gave them my payment date and confirmation number. The billing office employee said all they needed was a faxed copy of my bank statement proving the payment posted. So I faxed it. In early September I received the same bill AGAIN. Now you’re pissing me off. 😠 I called the billing office AGAIN and went through my whole spiel. I was told the same bullshit AGAIN-fax a copy of the bank statement proving the payment posted. So I begrudgingly did this. AGAIN.

At the end of September I received a letter from a collection agency. These mother fuckers have turned me over to collections FOR ACTUALLY PAYING MY BILL! Bullshit like this is exactly why I keep meticulous records of every bill I pay. I immediately called the collection agency and told them that I can prove I paid this bill through the hospital’s online payment system. So I sent the collection agency everything I have proving I paid this bill (bank statement, confirmation code, and screenshots of payment through the hospital’s online payment system.) I don’t hear another peep from the hospital’s billing office or this collection agency so I’m thinking the billing office finally got their shit together.

NINE MONTHS LATER I receive a letter from a DIFFERENT collection agency for THE SAME DAMN BILL! 🀬 I called this new collection agency and told them that I can prove I paid this bill last July through the hospital’s online payment system. I send this collection agency everything I have proving that I paid my bill (bank statement, confirmation code, and screenshots of payment through the hospital’s online payment system.) A couple of months have since passed and I haven’t received any more bills or collection letters…yet.

I’d like to give a shoutout to everyone who helped make this post possible. Mad props to chicken, exterminator masks, fanny packs everywhere, and of course Hardee’s breakfast for being the shit!

I Won’t Give Up But I Will Cuss the Entire Time

I can remember what life was like before my rare diseases arrived. Before they forced me inside a bubble. No matter how many times I have to miss out on things, it never feels ok. Sometimes it feels like I am left behind and that my world is becoming incrementally smaller.

People treat you differently when you have a rare disease. Sometimes their words can seem insensitive or even pitiful. Some people say nothing, out of fear that they will say the wrong thing. But avoiding me because you don’t know what to say ends up making us both feel uncomfortable. You can provide comfort by sitting in the shit πŸ’© with me. Understand that you can’t fix me. But with an open heart and a willingness to feel a little awkward, you can be a much needed form of support. It’s a gift that truly makes a difference. 😊

So many times in the last two years I have lost my normal. I have lost my career, friendships, my freedom to travel, hell even the simplicity of going to a store or a restaurant. After each loss I muster the fortitude to pick myself back up. Along the way there are lots of tears 😭, groaning, and more cuss words 🀬 than I can count as I try to figure out my new version of normal. I have had a lot of practice in being nimble and adjusting my life when my body decides to be an ass hole. I never know when something that was previously ok for me will suddenly stop being ok or safe. I no longer look for reasons why things happen because it doesn’t change my reality.

There are many days where I am forced to make decisions between my safety and doing something I want. I have already learned the disappointing lesson that I don’t get to do things whenever I want to do them. This is a lesson that so many people have struggled with during this pandemic. They aren’t used to sacrificing their vacation, visits with their family, or a party with their friends. Now we are forced to release our tight grip on how we think our life should be in order to live the life in front of us. But I know that my resilience (and a few fart jokes πŸ’¨πŸ˜‚) will propel me forward just as it does every time my life unexpectedly changes. It is up to me to imagine my new future and to find ways of doing things safely in order to make the best of life in our world’s new normal.

For the foreseeable future our new normal includes keeping an appropriate distance from others and wearing masks (that cover your nose AND mouth!) 😷 I feel like that shouldn’t have to be explained yet every day there are people not wearing face coverings properly. I have no patience for people unwilling to wear masks. Refusing to adjust their behavior for the interest of public health and safety is callous. Masks allow us the freedom to do things that we otherwise would not be able to do during this time. It is not a sign of weakness to wear one but a sign of responsibility and respect. It allows all of us to have control over our reality without putting people’s lives in jeopardy. We have the power to keep the spread of this virus at bay. We have control over how long this pandemic goes on; if only everyone believed this.

As a rare disease patient I am used to losing my normal. I have learned how to adapt and adjust without giving up hope. Once we accept that life is unpredictable and sometimes crushing, we can look for the strength to push forward after losing our normal. Some days are going to hurt. BAD. Nothing can protect you from that. Not money, social status, or even love. BUT you will experience beauty and healing that will make the painful moments feel worthwhile.

If You’re Coming, You’d Better Come Correct

During the last three months the world has had a glimpse of what it’s like to live like me. People have worn masks and gloves when they go out in public, they wore pajamas more than regular clothes, and they learned what it felt like to miss out on their plans and social activities.

But as the world opens back up and more restrictions are lifted, my reality remains unchanged. My rare diseases weren’t suddenly cured during the three months of quarantine. Unfortunately, the world now feels even more unsafe as people are flagrantly disregarding the need to wear masks or keep an appropriate distance from others.

Our country lifting restrictions does NOT mean that contracting coronavirus is no longer a risk. Just because you may not know someone who has been infected with or died from COVID-19 doesn’t mean it isn’t real and capable of devastation.

I can tell you first hand that being a patient in the hospital during this pandemic is AWFUL. You can’t have your loved one(s) there with you. YOU ARE ALL ALONE. Imagine delivering your baby without your loved one by your side. Imagine your loved one is on life support and all medical decisions have to be made over the phone. Imagine trying to cope with saying goodbye to your dying loved one via Facetime or Zoom because you aren’t allowed to be with them in person. πŸ˜ͺ Imagine having a medical crisis yourself and not having the ability to communicate with the medical team. This is my reality EVERY TIME I go to the hospital.

This picture of me was just before the coronavirus outbreak. It’s a very REAL example of what can happen if we’re not careful as a society as we reopen with fewer restrictions. This could be your loved one or friend with a machine breathing for them, being fed through a tube, vomit on their gown, and all alone in the ICU.

If you don’t like wearing a face mask then you’re REALLY going to hate the ventilator

But why are people so resistant to wearing face masks or practicing social distancing? Some people simply want to rebel because they don’t want to be told what to do. Some people don’t believe coronavirus is real and that it’s a government conspiracy. πŸ˜³πŸ™„ Then there are people who won’t wear a mask just because it’s uncomfortable. If we want to get trivial about what is comfortable versus uncomfortable, let’s get trivial.

  • Wearing a bra is uncomfortable. But I still wear one in public because no one needs to see my nips 😁
  • Wearing underwear that gives you a wedgie is uncomfortable. But we all still wear underwear in public (I hope!) And if you’re out there lovin’ every minute of it, that’s TMI for me πŸ˜†
  • Wearing a cup to play contact sports is uncomfortable. But athletes still wear a cup as protection in case someone kicks them below the belt. 😡

Public health is everyone’s responsibility! Smoking inside restaurants and bars has been banned because of the harmful effects of smoke to people’s health. Similarly, if someone is infected with coronavirus (whether they are symptomatic or not), they can cause grave harm to other people’s health every time they cough, sneeze or talk.

There are a number of people who are more vulnerable to COVID-19 and are not capable of speaking up for themselves against those not exercising care in preventing the spread of this virus. I believe in being a voice for those who can’t speak for themselves. I know what it’s like to be in that situation and it sucks. I’m lucky to be able to share my story but not everyone has that luxury-especially those infected with this virus.

I feel a combination of disappointment and frustration as I am reminded of my own limitations as our country reopens with fewer restrictions. As much as I would like to believe that my diseases won’t impact my life, deep down I know they do. I am a captive in my own body, grieving the losses related to my conditions. Man do I miss scrapple- with its crunchy outside and soft inside! 🐷 I know that I am missing out on many things others feel ready to do, but I must carefully weigh every movement I make in order to keep me safe and out of the hospital.

I’m not saying that we need to continue another three months of quarantining. I recognize that there needs to be a balance between restarting the economy and reducing the spread of coronavirus. But public health and safety should be prioritized over getting your nails done, hair colored, or going to the movie theater. These activities are not essential. But breathing is. Human life is essential. So if you’re coming, you’d better come correct by wearing your mask, washing your hands, and practicing appropriate social distancing.

Raw Honesty

“It is what it is.” A statement used by many of us to express frustration about a situation we believe cannot be changed and therefore must be accepted. A snarky facial expression and an eye roll often accompany the saying. πŸ™„ But do we REALLY accept the things we reference in this expression? Could we actually make a change? Or do we just spout off in the heat of the moment?

I came across a poem titled “It is what it is” by Austrian poet Erich Fried. It presented me with another perspective on this phrase; how it can also be about love, fear, and pain.

It is what it is

It is nonsense
says reason
It is what it is
says love

It is calamity
says calculation
It is nothing but pain
says fear
It is hopeless
says insight
It is what it is
says love

It is ludicrous
says pride
It is foolish
says caution
It is impossible
says experience
It is what it is
says love

I think this poem points out a number of reasons why we fail to accept some situations in life. Or at the very least why we are quick to dismiss them. Logic tells us it’s too risky. Fear convinces us that it will be too painful. Experience leads us to believe it’s impossible. Pride tells us we are ridiculous if we accept the situation. But love is just that…love. It is what it is. No nonsense. No foolishness. Just love. ❀

This got me thinking about situations in my life where I routinely mutter “It is what it is.” More often than not I am saying this as a dismissive expression rather than accepting or trying to change a situation. Deer eating the flowers in my garden? It is what it is. Boss asking me to work on my day off? It is what it is. McDonald’s employees giving me honey mustard when I ask for plain honey packets? It is what it is. One area of my life where I struggle with complete acceptance is how I look and feel while taking daily prednisone. Effin’ prednisone! 😠 See?! I can’t even say its name in a sentence without wanting to cuss at it!

If you know me or have been following my blog, you know that I have a number of health conditions that have caused me to be hospitalized several times over the last couple of years. Well I am about to dump my purse all over your welcome mat. In addition to managing severe asthma and life threatening allergies, I also live with 2 rare diseases: mastocytosis and hereditary angioedema. Unfortunately when one condition flares, it’s often like a domino effect that causes the other conditions to flare as well. For example, when I have an allergic reaction, the mast cells in my body overreact and release too much histamine. This taxes my respiratory system resulting in me being placed on a ventilator. When I am able to breathe on my own again I am taken off the ventilator, but the trauma from the tube down my throat causes my hereditary angioedema to flare. So my face, tongue, and throat start swelling. Then I have to receive IV treatment for the angioedema to prevent being intubated again. See what I mean about a domino effect?

In an effort to suppress all the inflammation in my body and keep my asthma as controlled as possible, I take prednisone daily. I fucking hate it. Unfortunately there aren’t many treatment options available for my conditions. And what treatments do exist, I am currently taking or have already failed.

Some days I struggle with truly accepting life on prednisone because the reflection I see in the mirror is not a person I recognize. I don’t look like or feel like me. I feel like a distorted monster looking at themselves in a fun house mirror. Kinda like Rick the hormone monster on Big Mouth on Netflix. πŸ‘ΉπŸ‘Ί

Swollen face from Prednisone AND Hereditary Angioedema flare this past week
Round “Prednisone face” remaining after treating Hereditary Angioedema flare this past week
Before prednisone 3 years ago

I try to keep in mind that underneath the cauldron of shit side effects I am still the same person. I’m still random, kind, weird, stubborn, supportive, fierce, loud, smart, and resilient. I’m still delicate and brutal. 😁 I still mix funfetti cake batter by hand instead of with an electric mixer. I still love all varieties of hydrangeas and I always smile when I hug someone. I still lick my fingers after eating cheese puffs and I always find it soothing when I hear a cat purring. I am not defined solely by my round swollen face, the buffalo hump on my neck, the sideburns on my face, my hair thinning and falling out, the diabetes, the weight gain, the purple stretch marks on my boobs, and the insane cravings to chow down at all hours of the night.

It is what it is. I know that there are certain aspects of my health that can’t be changed so I have accepted that fact. That doesn’t mean there aren’t things that I miss or wish were different. I miss eating scrapple for breakfast. I miss traveling around the world. I miss my thick beautiful wavy hair that I could style any way I wanted. I miss the work I did in blood bank. From the rush of a trauma to identifying antibodies, I just felt like that environment was my calling. I wish that I didn’t feel self conscious about taking my picture now. I wish that I didn’t have to pay such close attention to the elastic in my underwear for fraying. I wish that I didn’t have to do multiple breathing treatments several times a day every day. I wish that I didn’t have to wear special gloves every time I open the mail or a package. I have had to accept that the world isn’t safe for me. Everyday outings and mundane tasks can trigger an anaphylactic reaction or angioedema flare for me.

I’m still working towards complete acceptance of myself on prednisone. Some days it’s more of a struggle than others. For now I live day to day, even moment to moment, and trust that in my own time I will overcome this obstacle just as I always have.