Triggers are BULLIES!

It’s amazing how, with grief, one can be going along and out of no where one gets hit with a sucker punch.  I am coming up on the 4th anniversary of my oldest daughters’ death.  I have, for the most part, been doing well.  Until earlier in the week.  I started to have nightmares again. I would be sitting in my chair at work, only to break into a cold sweat.  I could not for the life of me think what was causing this.  I knew the date was close. But that just didn’t seem to be what was happening.

 Let me preface this by saying, the company I work for installed wonderful desks that will adjust to let you stand or sit…they are amazing!!!

Something like the picture below. My office even has this dress code 😊:

UNTIL…

I walked out of the restroom here at work yesterday. I looked over the office and immediately I could hear, smell and THIS is the picture I had in my head.

Stupid triggers. I was wrecked. When in reality, I was at work, safe!  But in my head…I went to this place.  The last place I was with my daughter. The medical team making rounds, consulting over her condition.  I have been walking through these memories in my mind and didn’t even realize it. 

Now, that I have talked about it out loud with my husband, it’s not so scary.  But these stupid triggers are the worse!

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UBUNTU or Playing to your strengths, Reflective Best Self

If a member of the Babemba acts irresponsibly or unjustly, he or she is placed at the center of the village, alone. All work ceases, and the entire tribe gathers in a large circle around the violator.

Then each person in the tribe, regardless of age, speaks to the accused, one at a time, recalling all the good things the person in the center of the circle has done in his or her lifetime. Every incident, every experience that can be recalled with any detail and accuracy is recounted. All the individual’s positive attributes, good deeds, strengths, and kindnesses are recited carefully and at length. No one is permitted to fabricate, exaggerate or be facetious about the accomplishments or the positive aspects of the person.

This tribal ceremony often lasts for several days and does not end until everyone is drained of every positive comment he or she can state about the person in question.
At the end, the circle is broken and the person is symbolically and literally welcomed back into the tribe with joyful celebration.”

(Excerpted from “Contact, The First Four Minutes” by Leonard Sunin)


“Your ability to work for the benefit of the team and not just yourself”

Teamwork, Compassion, Commitment, Accuracy, Friendly, Sincerity

Your strength is tenacity. You have a way of graciously getting what you need to finish a project. [..] administrate to the completion of a project

Care for family and make others happy and to be a part of the bigger calling/team.

Ability to work for the benefit of the team not just yourself, ability to see a project all the way through, and the desire to put your best into every project.

You stay on top of issues. Your focus is to always seek the best information and pathway to ultimate health.

When we worked together […] I gave you the task of creating a way to communicate to the employees that would grab their attention. You were creative and always made sure the project was complete.


“Your honesty and integrity is your inner force”

Compassion, Determination, Commitment, Integrity, Longevity, Excellence, Safety, Composure

You follow biblical truths, which is not always easy, but that motivation comes through your faith.

Honesty and knowing the job is well done.


“You have a fire about you when you are able to initiate a plan, accomplish and see the plan through to completion. Your hearts desire is that the plan or event is for the betterment or benefit of those around you”, “You give of yourself 100% to the things you do”, “You are most alive when you are being creative”, and “You are an organizer in the natural sense”

Competition, Compassion, Determination, Commitment, Initiative, Creative, Capable, Organization, Awareness, Excellence,
Accuracy, Other-focused, Spontaneous

You come alive when you are allowed to be creative. When you are able to take the lead on a project.

You provided a way and method for engaging the employees.

When fully given a project and a required outcome, then striving to get the most creative and straight path to the outcome. Normally with you, there is always an unexpected gold nugget to each path in your world.

While on a mission trip you have encouraged young adults to work hard through your own example […] you reminded a group of girls their efforts were just as important as their male counterparts. […] you believe in people no matter their age or capabilities. You make those around you desire to give their best. You celebrate them.


“Strong and passionately protect your family, friends and those that are hurting or those you are mentoring”, “You have a sense about you. You know when someone needs extra encouragement or help and you give it with honesty and love”, “You do not have to use your words to show your strength or where it comes from. Even when you are in a very difficult or trying time yourself, you still show strength and become a shelter for others” and “You have an unwavering strength and happiness through lifes’ trials and day to day events”.

Compassion, Determination, Commitment, Initiative, Longevity, Awareness, Structure, Safety, Friendly, Integrity, Sincerity, Rational, Spontaneous, Fun, Composure, Freedom


“You are a perfect mix of grit, love and faith”

Watching you through the most difficult time in your life, I believe. As a nurse I watched the most beautiful thing, you didn’t have to use words to be insightful. It was all in your actions, and your willingness to trust God with your heart.

I would love to see more nurses have your perfect mix of grit and love and faith! We need more people with hearts like yours, a heart that loves like Jesus, in our profession.

The REASON for my existence and

The reason I rise and continue everyday

The above areas I have highlighted include the feedback from some of the most important people in my life whom I admire and value their opinions. This sampling of the feedback I received, are what make me who I am today.  I am who I am today because of them and the life experiences I have gone through. My confidence, desire to do good, and fire in my soul is all because of them.  Thank you for reading my Reflective Best Self 2019.

#ThisIsSjögrens

April FB Frame

Name: Shelley

Current age: 51

Age when diagnosed (or What is your connection to the disease): 51 after 8+ years of being symptomatic 

How would you describe yourself in (teacher, graphic designer, stay at home parent): Administrative Coordinator 

What are your top three most difficult symptoms to live with: Extreme Fatigue, Muscle Aches/Burning – Brain Fog

What is your most difficult symptom that people don’t understand: When I say I am hurting or tired it is not just a need to lie down or a need for Tylenol or attention.  It’s a final hit the wall and I can’t go any further and have to stop  

What do you wish people knew about your Sjögren’s: I don’t want your pity or disgust. I want you to understand me the same way you understand and love on someone with cancer  

What’s your best Sjögren’s tip: love yourself! 

This a set of questions recently asked of patients diagnosed with Sjögren’s syndrome. The answers are mine. This one portion of my health seems to have taken over all of my thoughts these days. Not necessarily in a negative way. Not in a positive way either. However it is a consuming thought. I just need to know everything about this monster that has reared its head inside of me. Not only because of the things I listed in my answers above, but also so that I know how to fight this enemy.

As I said, I want to be understood. That is all. I want others like me to be seen and understood. To be loved and cheered for like others fighting a battle you cannot see but you trust them in knowing it is real.

#ThisIsSjögrens

When you are at the end of your rope. How does that end?

Actually I know how the saying ends…tie a knot and swing.

However, I have to laugh at that phrase right now. If I were to tie a knot, there is no way in this lifetime I would be able to swing.

I caught myself finishing the quote this way the other day;

“I realized if I tie a knot and try to swing, I will wear out too soon. Instead I looked around found what I could, and built a swing. I seem to be doing just fine now. Just swinging. And enjoying a different view”

The person I was talking to just kinda looked at me with a sideways glance and half hearted laugh. As they walked away, I heard them say, “well ok”.

Let me bring you up to speed. I have recently been diagnosed with a plethora of medical conditions. It all centers around an autoimmune disorder.

To be honest, in my opinion when you receive this diagnosis, it’s as if you step up to a buffet of all types of diagnosis. All because everything wants to attach itself to this thing.

The down side, to treat what I have, they have to suppress my immune system. So I have a medical mentor that I can talk with anytime I need to. I have a person that has had the same family of diagnosis as mine that I can also “live chat” with. Along with a host of online community group that my medical team has connected me with. The biggest thing I learned from this amazing group of people is this simple little thought;

“Look, no matter how hard you have to look sometimes, look for the good!”

Which brings me back to not having a knot in my rope. That’s why I just made me a swing! Because most days….I wouldn’t have the strength to hang on a knot!

Finding my purpose among the thorns

I woke up today with my body feeling as though it were being invaded with hot thorns throughout every vain. I am learning, even though this has been going on for some time now, this is the beginning of what is called a psoriatic arthritis flare.  After I showered, trying to ease the feeling, the thorn feeling began to come at me from the outside on the surface of my skin. I’m not even mentioning the way my joints feel in my legs or neck. That is for another day.  

As I sat there, I asked myself the question again; how and why I am to use this time in my life for God’s glory.

[side note: The reason I asked myself this question is because when I first started having these problems, someone said to me, why do you think all of this is happening? My first response was, I don’t know but God is not shocked, and I know that I am to look for ways to give Him the glory.]  

I am so mad about all of this. Heck, I am still mad about things that happened on July 27, 2015. Why did Mackenzie have to die? So, am I even capable to use anything in my life for God’s glory? Does He want me to? Would it matter? 

I began being consumed with the thought of roses and the thorns that are on a rose bush.  

The first thought that came to my mind was the quote by Lincoln. I’m not sure if I can be thankful for the thorn bush yet. But, for today, I have done all I can do to at least focus on the fact that at least the thorn bush has roses. In addition, I have focused on what else the thorn bush does. It protects so many things, baby birds and other small things that otherwise would not make it. The rose is beautiful and shines when it can, but it is weak. Alone it is prone to disease and invasion, without the gardener who works with it diligently, pruning it and working in around the thorns to take care of the rose, the rose would die. It would be destroyed by the invasion of disease that love to consume the rose. The thorns would overtake the rose. In the big picture the thorns, no matter how painful they are, protect the rose. How are my thorns, aka psoriatic arthritis, fibromyalgia, and several other autoimmune syndromes that I have “protecting” me I do not know, but they have a purpose in my life currently. The gardener as He works through the thorns, to prune and care for the rose bush, He is in a sense caring not only for the rose, but for the thorn bush.  

So, I want to enjoy and be happy for days that have roses outweigh the thorns. But I must remember my thorn bush is somehow a protection. Only the master gardener in His wisdom knows that. I can’t see His full plan, but I must remember to trust His heart. It’s not easy, not easy at all. But I have too. I must believe that even when it hurts the most, and when I feel as though I am the biggest burden and let down to my family, the Gardner is taking care of me and wanting me to wait until the roses bloom again.  

A letter to my family and friends

Dear family, friends and anyone on a journey they are not sure they are ready for…

We are at the beginning of a new journey. And this one is a very different one, at least for me. This time, I am the one that is in the seat being taken on the journey and not just observing.

Along with other things that we are still watching, I have recently been diagnosed with fibromyalgia, and psoriatic arthritis. To be honest, I’m having a hard time talking about it, but I’m really going to need your love and support as I go through this journey.

Fibromyalgia, (yes it is real! Many times, I have been told by doctors and others that it is a fake disease or it is all a mental thing) is a Syndrome effecting the central nervous system. In addition to this, I have also been diagnosed with psoriatic arthritis. This is an autoimmune disease which has many factors involved with it.

At times, I might be feeling down, in pain, or just exhausted from dealing with the effects, but you might never know it because this is an invisible illness. However, because every day, every hour is different, I will appreciate and be honored for you being there for me in every way. Especially in prayer.

Again, I come to the place where I say, God is not here in shock or shaking his head in surprise at this. He knew this was happening. Now it’s just up to me. Up to me to look at what and where He is to be Honored and Glorified.

Love you so much,

Shelley

[ You can find creditable information here if you would like: Fibromyalgia Information  and Arthritis.org ]