Stress… can you really say it’s only the feeling of the day?

Stress.  I feel like everyone can relate to being overwhelmed. How can life not be overwhelming at one point or another, right? Throughout my childhood and young adulthood, I had always considered the idea of being overwhelmed as something that meant you just had too many things to do and not enough time to get it all done before another task or responsibility got added to your pile. As I have matured and entered into what science deems “middle adulthood”, and even though that makes me feel old, lol, I reflect on the times and my life’s current situations and realize that during most of it, I was more emotionally than physically overwhelmed.

Chaos

Yes, the demands of being a young mother at 18 were challenging. Couple that with being the primary caregiver for my dad while also going to college/nursing school, I had a lot on my plate. But growing up in a house that was in a constant state of chaos for one reason or another, left me feeling like the amount of physical and emotional tasks and challenges were normal. Living in a constant state of high stress was the only way I knew how to survive. I was so accustomed to chaos, that when there was none, I would seek it or create it.

I knew no other way to function if life wasn’t constantly trying to take me down. I even jokingly reflect that my teenage years in our childhood home could have been easily upgraded from chaos to mayhem.

Physical  Impact

After many…. many… years of therapy, I learned how to stop looking for chaos. By finding or creating my own peace, I was able to manage my stress levels…. or so I thought.

This constant stress always created some underlying health issue or challenge at one point or another in my life. My mother would say that I wasn’t a hard child, just the one who was constantly presenting new challenges on the family health front. (If no one has heard of it, then Casey must have it.  )While that can be a post all on its own, the one that truly stuck out and I think it relevant to this posting, is my skin condition (again, could be a post on its own).

An Allergy to Water

The shortened version is that after the birth of my oldest son, I developed a skin condition that no dermatologist could identify. After many dermatologists and 12 years later, I was told that I had an allergy to water. Yes, you read that correctly. And the reason my body was having this issue, was initially triggered by the overwhelming amount of stress and emotional trauma I endured during that time.

And since I didn’t realize that stress and unresolved family issues were causing so many physical flare ups, I was placed on disability for almost 9 months, removed from work that I truly loved, so I could go on immunosuppressants, coupled with anti-anxiety medication and a heavy dose of antihistamines. This medication regimen had helped get my body to stop attacking itself, allowing me some time to get my stress levels under control. But more on that later.

After some big personal losses in my late 20’s and lots of consideration, my husband and I decided to move our life in New Jersey to Georgia to start fresh. Even though we absolutely loved our home state, to say that the stress and emotional triggers in our lives were overwhelming would be a complete understatement.

The Big Move, Big Relief, Surprise News

Once we settled into a routine, our lives in Georgia became simple and surprisingly, significantly less stressful. Yes, we had stress, but it was a different stress. I had stopped seeking chaos, avoiding it at all costs. And an added bonus…. my skin calmed down! The emotional turmoil that I was enduring all those years, slowly started to melt away.

Yes, I still have sensitive skin but I no longer need any of those meds for my skin! Rebuilding our lives in Georgia gave us a feeling and sense of happiness and peace that we had truly never experienced. And along comes fate, with its news of my diagnosis… laughing at our idea of a plan… throwing our lives once again into complete emotional upheaval.

The Diagnosis

We struggled to understand what the future held when no one could even tell me what was going to happen or when it was going to happen. The idea of a prognosis was an absolute joke. Our stress levels were once again taking one giant leap at a time with the jumps coming closer and closer together.

We had decided not to tell our boys because quite frankly, what were we going to tell them? We didn’t have any answers, so how were we going to answer any they had? We kept my diagnosis from them for almost a year before my knee problems and endurance became more prominent.

My oldest had more questions and my husband was protective, sometimes overprotective. We were both on a short fuse. (Telling my sons was another hurdle… I just keep adding post ideas, don’t I?)

I had sought out a therapist again, knowing that all of the coping skills and mental health intelligence I had learned weren’t enough… I wasn’t prepared for this. I wasn’t prepared for muscular dystrophy.

Disease Progression, More Unknowns

As the disease has progressed and remained an unknown, I have tried to find different ways to cope with the ever growing demands that our ever evolving, forever changing lives brings us. I am not sure how other people choose to handle their stress.

But since I am unable to do any physical exercise that would bring endorphins that create more muscle damage, and I am told that yelling at everyone is not a true coping method, regardless of how much better I feel in the moment….I’ve had to choose a new strategy.

Moving Toward Goals, A Game Changer

Instead, I have embraced setting long term goals. A few months of therapy taught me that I was living in fear of things I had no control over.  And that I could remove some of that stress by finding something to look forward to.

Working toward a goal that would make me feel productive in my own life- – not feeling like such a potential burden was a game changer. Another game changer was embracing living in my emotions but not moving them in permanently. For example, when I am frustrated or upset, I can be in that emotion for a certain time frame, but it isn’t allowed to consume my life. My mother always referenced it as having a pity party when needed, but at some point, the party needs to end.

In the last few years, especially since Covid, I resumed my love for reading. It allows me a space to be out of my own head for a while, regain some emotional control and find my center.

My hope..

I hope that at some point the stress of the unknown will go away and be replaced with scientific answers and standards of care. I hope that you, the readers of these posts, find some sense of solace with the knowledge that you aren’t alone in struggling to handle those hurdles that leave you feeling unprepared.

Your emotions are just as challenging and just as valid as everyone elses.

And lastly, no one has their shit together. Everyone handles their shit differently. As long as you aren’t hurting yourself or anyone else, then continue to do your best each day, because that is all the rest of us are ultimately trying to do, too.

A Walking Medical Mystery

In some of my other posts, I mention having had health issues most of my life. Let me preface by saying that I never had to endure anything as horrible as childhood cancer or some life threatening or debilitating disease as a child. I did, however, have health conditions that, in their time, were not as well-known as they are now.

I also want to acknowledge that standards of care are vastly changed since my childhood, but it will explain where science and medicine were at that time and how far we’ve come.

Medical Mystery #1

As a child, I had eczema that only covered the left side of my body, (for real!)- – rashes that only affected certain parts of my body; 5-6 operations to have tubes in my ears starting when I was 18 months old, and horrible sinus allergies. Nothing crazy but enough that my mom had to keep an eye on me more often than not.

Medical Mystery #2

Fast forward a few years, maybe late elementary school, early middle school. I get what first appears to be pink eye… no big deal, right?
Wrong!
3 doctors and 1 week in the hospital later to determine that I didn’t have pink eye, but an abscess had developed in my eyelid and was pushing my eye into my head, causing an increase of pressure in my eye and head. Who knows, right?

Medical Mystery #3

Few months goes by… I must have gotten sick and required an antibiotic. I had told my mom that I felt like I had something in my throat for days but nothing was there. A few days later, a friend and I are in our bathing suits, getting ready to go to my grandmother’s house to go swimming when she asks what’s on my stomach. I look down and there are these huge, raised sections on my skin.. (FYI… I had one of those really cool bathing suits back then that had 2 holes on each side of the stomach… they have since gone out of fashion and are making a slow come back, just in case you weren’t interested, lol). One ER visit and a hospital admission later… anaphylactic reaction to an antibiotic. One week stay with the world’s most misleading medicine in the world. It smelled like white chocolate.. only it didn’t taste like white chocolate… the hospital was close to the high school, so my brother came by on his lunch to drop off Jolly Ranchers to my nurses to bribe me into taking my medicine. It worked. LOL

Medical Mystery #4

I’m now in 5th grade, I start telling my mom that I have horrible headaches and I am so tired all the time. I can’t keep my eyes open for more than an hour at a time. She takes me to the doctors again… they say its nothing and send us home. This goes on for almost a month… a FULL month! After 3 visits and my mother laying down the law, the doctor finally decides to take a blood test only to figure out that I have mono. (I’m about 9-10 years old. Doctor’s excuse was that he didn’t think a blood test was necessary…) Today, this would have been figured out within a few days, but again this is the early 90’s. Science hadn’t caught up yet. It’s highly contagious to people who live with. I got my own set of dishes and utensils that no one else used, washed with bleach when done. I spent the next 3 months sleeping 18-20 hours a day!!

Medical Mystery #5

Now it’s 6th grade… and I get it again, but this time I am out sick for 6 months, same sleeping patterns. The doctor tells my mom that it will double each time I get it so I need to take care of myself so it doesn’t continue.

Not too soon after this, I break my hand being a kid and rollerblading in the neighborhood. It takes 3 doctors to figure out to turn my hand a different way on the X-ray to see all the fractures on the inside face of my knuckles that were not seen on a different view. 6 weeks in a cast… and oh! It was my writing hand! My teachers don’t seem to understand that I can’t just switch hands to write, so they make me use my right hand to write all the assignments and homework. Needless to say, I remain someone ambidextrous.

Medical Mystery #6

I’ve somewhat told you about my skin issues but I kind of glazed over it.

I was 18 when it started to happen. I noticed that after I washed the dishes my hands were swollen, red and itchy. I figured it was the soap I was using and kept that mentality for a number of years. I changed my soaps, saw a few dermatologists who said to try this or that, but it only made things worse.

If I went out in the heat and started to sweat, my whole body was itchy. Itchy like your skin was crawling in bugs, itchy. Exercise made me sweat… itchy. Showers… itchy before I even washed my hair.

The doctors my mom took me to kept telling me that there was nothing there. There was no reason for it and would send me home with a prescription for some expensive scentless cream or lotion that made my skin go crazy. We continued to search, but to no avail.

It got so bad that when I would shower, my husband would have to hold my hands to prevent me from scratching my skin off. I didn’t care if my skin bled or cracked or wept. The itch was so intense it would drive me literally insane.

My hands were the most visibly affected. I would wrap my fingers in cortisone cream and cover them in gauze. I looked like a leper. I finally got some medicine to stop my itching before I would shower. It was like taking 2 Benadryl just so I could get clean. And to deal with this, I had started showering every other day because my skin couldn’t tolerate the water.

Medical Mystery#7 and ten years later..

This process went on for over a decade, literally. It just became part of my norm. Using a certain brand of homemade soap, certain brand of razors and shaving cream, medicating before a shower and every other day…. I had stopped noticing how often I was itchy. I was always scratching my legs or arms or back. I was getting ready for a surgery when my GYN asks me why I am taking a particular medicine. I explained it to him and he stops…pauses… looks at me and says ” You live like this?”

He then referred me to a teaching hospital in North Jersey, where he thought they might have a better idea or more specific subject knowledge. At this point in life, I had all but given up hope that someone would believe me, but figured, ‘Let’s just try one more time.’ Couldn’t hurt for one more crazy reaction from a dermatologist.

OK, one more doctor..

So I went, told the doctor about it. Showed her my hands. She said, “It’s psoriasis.”

I said,” No it’s not.”

She looked at it under a microscope during my visit, said “You’re right, it’s not.” Then she said, “I don’t think you’re crazy. I think you really do have something and I think you have aquagenic pruritus.”

Then she proceeds to explain that it literally translates to itchy after water. (How does one become allergic to water…?)

I said  to  myself, “Well duh! ”  as she explained that there’s no official way to test it except to do a skin patch test to rule out other potential irritants or allergens that would cause an issue.

Longest 3 days ever it felt like!! Turns out, not only did I have my body attacking itself after I went in water, but it didn’t like a bunch of other things that are in almost everything you eat or touch! I can’t live in a bubble, is what I told her!

I thanked her for everything, especially for believing in me. We came up with a treatment plan, including getting my triggers and allergens under control.

I, still to this day, am careful about where and when I shower, what soap I use and read the labels of products that are topically applied. Talk about a nontraditional PTSD!

So imagine my surprised face when I’m told that I am a patient with a disease that affects only one in a million people…HMERF (Hereditary Myopathy with Early Respiratory Failure)…







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