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.

To Representative Ferguson

To Representative Ferguson

From: Christine G. Duane, Executive Director, The Foundation for Casey’s Cure, Inc.
RE: The Rare Disease Community of Georgia
Date: March 2, 2021

Dear Representative Ferguson,
On Tuesday, March 1, I had the opportunity to speak with your staff member, Robert Redding.
The purpose of our conversation was to provide him with information about why you, Rep.
Ferguson should support federal legislation that will improve access to care, services, and research that will improve the lives of the rare disease community of Georgia, especially within
your district. This is the text of my presented speech to him. On behalf of the Rare Disease Community across Georgia and the rest of the United States, 25 million patients are calling for your support. I hope you heed their call on their behalf.

Sincerely,
Christine Duane, Executive Director of The Foundation for Caseys Cure, Inc.
162 Wellington Drive
LaGrange GA 30241
732-300-5708

The text of our call was as follows:

Hello!
My name is Chris Duane from LaGrange/Troup County, Georgia.
In preparation for this meeting, I’ve spent some time reviewing the health-related bills and resolutions previously or currently supported by Representative Ferguson. In doing so, I’d like to commend Representative Ferguson for his support for:
• HR 119: Lower Cost More Cure Act of 2021
• HR 4066: Save The Rural Hospitals Act of 2021
• HR 3630: The Lymphedema Treatment Act and
• HR 1916: Ensuring Lasting Smiles Act

Representative Ferguson’s support for these and other health issues leads me to my first ‘ask’ for today’s meeting.

As an active member of the Rare Disease community, I hosted an event at Lafayette Square on Monday, February 28, in support of #RareDiseaseDay. I was honored to hear the tragic stories of my neighbors in LaGrange and those who live in your district and their struggles with getting help for their very sick child or themselves. It is on behalf of these people that I urge Representative Ferguson to demonstrate his commitment to the Rare Disease community and join with 100 fellow House members of the nonpartisan bicameral Rare Disease Congressional Caucus. The Rare Disease community’s voice needs to be heard and we are looking for his voice to join with ours.

One of the other resolutions he supported was HR 3537, Accelerating Access to Critical
Therapies for ALS Act, which was introduced to the House floor on May 25, 2021, and moved for Presidential signature on December 23, 2021, to become PL 117-79. This bill was passed with unprecedented speed; a credit to the writers and supporters of the ALS community. This leads me to my second ask: The Rare Disease community strongly urges Representative Ferguson to support the Speeding Therapy Access Today Act of 2021, more commonly known as theSTAT Act (HR 1730). This bill is a bipartisan bill, created with the input of the Rare Disease community, aimed at improving the development of and access to therapies for the Rare Disease community.

Specifically, the STAT Act of 2021 (HR 1730) will enact policy reforms at the FDA level to accelerate the development of therapies across the rare disease spectrum. And, just as the Critical Therapies Act did for ALS, the STAT Act of 2021 has the huge potential of shortening the development process of a rare disease patient from an average of 15 years to as few as 3-4 years.

25 million Americans deserve access to therapies within their lifetime. Many of these
Americans will die before those therapies are made available to them or their family members.

Five years ago, the FDA established the first FDA Center of Excellence focused on
oncology, which has been extremely successful in bringing new cancer therapies to
patients. We ask for the same opportunity to be given to the Rare Disease community.
We ask you to show your support for the Rare Disease community in your district and
cosponsor the STAT Act of 2021, HR 1730.

Thank you and respectfully ask for your support on these legislative issues.
_______________________________

Dear Reader,
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Read “About Us” to learn more about Casey’s journey with muscular dystrophy.

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