Our Heroes

I was originally going to make this post about the fact that after twelves long years of trying I have still not completed the challenge of 2700 Faces of Ankylosing Spondylitis. 

But this is supposed to be a blog of gratitude, so I thought long and hard about what I wanted to be grateful for today. It was not difficult to realize what I should speak of today, and that is about the people who are no longer with us, that walked the journey of Ankylosing Spondylitis just as I do.

Some of these beautiful people could no longer continue and felt that suicide was their only choice. 

Some of these beautiful people are no longer with us due to Ankylosing Spondylitis complications, issues, accidents, or treatments although their death certificate will never reflect this.

Some of these beautiful people were just called home because it was their time.

They are us, each, and every one of us….

We are one in the same. 

My heart breaks as I add each of their names, to many to be connected to me, how many others are there we have no idea about.

I respect each one of these amazing people for believing in me enough to share their truths with a world who chooses not to see them. 

They fought so hard to help people learn and understand what this journey with Ankylosing Spondylitis is honestly like to live with.

I hope one I will be able to complete the challenge of 2700 Faces of AS, I owe it to them to continue to do so.

I hope they know how much I loved and respected them and how I try so hard to continue to speak our truth with the world.

I hope you will take the time to read each of their stories.

Today I am grateful to all these amazing human beings for helping me be able to create something beautiful out of something so devastating to all of us.

Thank you from the bottom of my heart and the depths of my soul, I pray that you are all at peace.

As I was including each of their names and links to their stories, it became very overwhelming for me, a lot of these wonderful people I had the pleasure on some small  scale being a part of their lives. Their stories are OUR stories, their pain is our pain, and I carry each of them and all my faces in my heart. One day it is my hope that the medical field will take Ankylosing Spondylitis serious, and work harder to find cures for all of us, or at least pick a name and stick with it.

Ankylosing Spondylitis may not be listed as the cause of their death but I assure you it played a role in affecting the quality of life.

There are no words to express my love, respect and gratitude to them or their loved ones for being a part of Faces of Ankylosing Spondylitis.

My heart's desire is that you are all now at peace.

Some of you walked before us.

Some of you walked beside us.

Some of you will walk behind us.

But your memory will

always be carried inside us.

Rest In Peace

May your journey be pain-free.

A.S. Face 1858: Leonard Trask

First person to ever be diagnosed 

with Ankylosing Spondylitis

A.S. Face 0500: Stuart

His suicide compelled me to speak about 

 the hard truths about Ankylosing Spondylitis

A.S. Face 0038: Sara Frankl

She gave me the courage to create 

something beautiful 

and 

a post shared about her

 is how I ended up coming up with 

the idea of Faces of Ankylosing Spondylitis

A.S. Face 0820: Holly Rygaard

A.S. Face 0405: Michael Tracy Smith

Challenged me to do 2700 

Faces of Ankylosing Spondylitis

A.S. Face 0014: Brian O’Neill

A.S. Face 0005 : Jackie Aitchison

A.S. Face 0021 : Jake Chegahno

A.S. Face 0100: John Goff

A.S. Face 0034 : Nicole Kalnicki

A.S. Face 1071: Rachel Tew

A.S. Face 0394: Chris Scott

A.S. Face 1500: Michael Friend

A.S. Face 1280: Denise Burns

A.S. Face 1368: Tanya Amstutz

A.S. Face 0025 : Jennifer Fiamengo-Negrón

A.S. Face 0506: Gail Chamberlain

A.S. Face 1204: Carmen Niesen

A.S. Face 2100: Tisa Elaine Dixon

A.S. Face 1493: Mitzi Pate

 

A.S. Face 1460: Josilyne Kreisler

A.S. Face 0102: June Weatherhead

A.S. Face 1542: Darren McPhee

A.S. Face 1620: Karlie Edwards

A.S. Face 1515: Shawna Underwood

A.S. Face 0942: Annie

A.S. Face 1135: Belle

A.S. Face 2197: Johnny

A.S. Face 0598: Kimberly Kundinger

A.S. Face 0688: Holly Joiner Weatherbee

A.S. Face 0630: Kristi Shpur

A.S. Face 1366: Thad

A.S. Face 2178: Fred

A.S. Face 1728: Carl F. Miller

A.S. Face 1013: David Perry

A.S. Face 1707: John Allan Hill

A.S. Face 2215: John Potter

A.S. Face 1754: Kevin Coleman

A.S. Face 0783: Rodel Ciobanu

A.S. Face 1487: Bradley “Jay” Ford

A.S. Face 0703: Dana R. Spencer

A.S. Face 0195: Patricia White Lisewski

A.S. Face 2074: Sherry Webb Nicosia

 A.S. Face 1016: Don Milde

A.S. Face 2073: Charles Webb

A.S. Face 1490: Araxi Samuelian

A.S. Face 0621: Laura Groscost Potts

A.S. Face 1331: Nicholas Demetrius Hantzis

A.S. Face 0416: Viktor Romet

A.S. Face 0417: Enn Romet

This Message Is To You

This message is to you, yes you.... you know who you are. What if you stopped and paused for a moment, what if you reached out to someone, what if you decided to give tomorrow a chance? What if? What if the struggle was worth the end result? What if the best was yet to come? What if? I can't tell you how many times people tell me you have no idea, but what if I did? What if I told you that I did, what if I told you I had written that letter to my family? What if I told you I was right where you are not once but twice? What if? What if I told you I didn't have some epiphany or change of heart? What if? What if I told you I was angry and bitter because I was here? What if? What if I told you I had gotten to such a darkness that the darkness was the only light I had? What if? This year (2017) especially has been the most rewarding of my life, such a personal triumph that many can't begin to understand but you do. What if I told you I was blessed with doing an interview with Dan Reynolds for This AS Life, live. What if I told you that I was blessed to go to Las Vegas with my daughter? What if I told you I got the honor of being on the Spondylitis Plus Cover with Dan Reynolds? What if I told you I was blessed to get to go to California to meet all the wonderful people at the SAA and Erica! What if I told you I was given an award for Outstanding Volunteer? What if I told you there was a big beautiful fancy dinner in our honor? What if I told you that in 1987 I tried to commit suicide? What if I told you that last night my family and I had the honor of meeting The Imagine Dragons? What if I told you I tried again to commit suicide in 2013? What if I told you I contemplated doing so this year? What if I told you that it is hard to be open and honest with all of you? What if I told you the reason I am is YOU? What if the best is yet to come? What if you reached out to someone who knows what you are going through or has been there? What if? This year during all of these amazing times of my life all I could think of was WHAT IF? Please remember THIS what if and be present today in your life, we are not all guaranteed tomorrow but what if we were?

I used to want my legacy to be the Faces of AS or my desire to be kind to others but what if my legacy was to be this… That you never truly know what tomorrow will bring and what you would have missed if you were not here.

I hope you choose to pause and stop and reflect, then rest, breathe and try again.

Life is meant to be lived and living is one day at a time…

Please remember when you are in that darkness in your life that I shared with you my story of darkness and what I would have missed if I had succeeded, I mean really what if I had!

Stay strong…

I am grateful for the courage it takes to speak out openly to others and the courage it takes to reach out to someone...

A Burdened Heart

I wonder if I had known what the future would hold in store for me would I have changed directions?

I could apply that question to so many areas of my life, but for now it is about my journey in the A.S. community.

It seemed so simple. I am stunned how naïve I was. My intentions were heartfelt. My heart was sincere, but…

I mean how hard could it be to go into a community, make friends, and lend a helping hand.

Listen to people with a compassionate heart. All you had to do is be open and sincere right?

One would think…. 

In the beginning it was fairly simple, just a few of us, open and honest communication. Friendships began to develop, you were able to be there for each other.

And then it happened….

One more, five more, hundred more and then there were thousands of us. All reaching out and communicating building friendships.

You offer your email, you offer your phone number, you offer yourself and then there becomes nothing left of you.

Honestly people in the community have no clue, well some do, how hard it was to keep up…

When you would confess how overwhelming it was, people would suggest don’t call back, don’t answer, just delete. Their reasoning was usually the same it is only social media. How is that true?

Every word typed on a computer and put into the world of social media is typed by a human being.

Every person who called me, texted me, emailed me and reached out to me was a human being. 

Everyone sharing their love, comfort, their troubles, their fears, their friendship, and their selves with me. 

In the end I failed, instead of helping people or being there, I let so many people down and ended up hurting them.  

When my grandson died, I received emails, text,  messages, cards, and calls from hundreds of people. Every time I tried to respond, more would arrive, or they would respond back making it difficult for me to move forward to the next. It was a vicious cycle but such a beautiful circle of love.

It has been this way for many years, hundreds of communications that I can’t keep up with.

People letting me know they are struggling, reaching out to me. People comforting me during my difficult times, people sharing their accomplishments, so much lost in the magnitude of so many messages.

Because of my inability to manage this I carry a tremendous amount of guilt and heartache.

Some of you know the heartache and tragedies that I have struggled with in my life and the difficulties that played a huge part in this.

I know in my heart I did the best that I could. I know that I never meant to hurt anyone or make them feel less than or not important. I know that mentally, but my heart feels differently. 

It is my fault that someone out there is hurt, lost, feels less than or feels betrayed by me. I was so naïve and unprepared to be able to handle this in a way where this would never happen. I hope one day those I have hurt will be able to understand it was never about them....

That I would never intentionally hurt them and maybe one day they will find it in their hearts to forgive me. 

Because for me it was never just social media, it was about precious people. 

Till the day I die I will be burdened with guilt and heartache that I may have missed someone like Stuart who needed us so desperately.

So It Begins

         

 

After a conversation with my daughter yesterday I have decided to write this section for my blog. 

I was originally going to title this section The Truth Behind My Smile, but it didn’t quite feel right to me. Because sometimes it feels like my smile doesn’t belong to me, but to others in my life. I guess what I am trying to say is that most of the time when I smile it is to make others feel more comfortable or to reassure them in some way, which makes it feel like it is their smile and not mine.

 I was introduced to the world of blogging by a friend of mine in the AS community and it gave me a place to be myself. But when I had the courage to be vulnerable and open about something I would always make the post private. I never felt brave enough to share that part of my story until now. I have wanted to write this blog for many years but didn’t have the emotional strength to do so even now I am not sure. I just feel like it is now or never.

Most of the time we only share the half-truths of our stories, because it is difficult and we are afraid of people not accepting it.

I have always tried to be an open book within the AS community but a lot of times I held back from writing about things that were bothering me or had happened. I guess it goes back to being called a fear monger or attention seeker, labels that pieced my heart and lodged themselves for ever. Until now.

I have decided to do this blog because I feel the need to. I need to put it into words what I have been carrying so I can let it go. The dates shown on the post will be the actual date of when they were written.

So today because of a daughter’s ability to see her mother, I will begin removing my mask… 

 

Removing The Mask

Yesterday was an emotional day for me for many reasons. It was my mother’s birthday. My daughter was sharing her plans for her future. Damn I am so proud of her! I was busy working on my blog and trying to get it just the way I wanted. I have a section that I am working on that I want to be very candid and honest about certain topics and I wasn’t sure what to label it as. The truth behind my smile? My truth behind the smile? 

I had just sent my daughter a post called the mayonnaise jar. I thought it would be perfect for her and her new plans. She loved it and I was so happy she did. I felt like I had contributed something special.

So I shared with her about my dilemma about what label I should use and out of the blue she says how about removing the mask? I was shocked! She laughed. I said no you do not understand! I shared with her that I had started a blog in 2011 called Removing the Mask….

She could not believe it, so I sent her this picture.

Needless to say that will be the label I use because it shows me that what I am doing is important, at least for me it is and maybe for others too.

Today I am grateful for the closeness I have with my daughter that allowed me to remove the mask.

We Will See

I stepped away from the community on February 28, 2023 a day after the anniversary of my best friends death. That day was very emotional and upsetting for me and I just couldn't find it in me to be stronger than the situation I found myself in, at no fault of mine. It isn’t the first time I felt the need to walk away, sadly it has happened several times over the past fourteen years. To be truthful this has been the most gratifying and toxic relationship I have ever had. 

At my doctor’s recommendation I sought out “my” people. I sat quietly on the side lines for several years, seeking a place that I could remove my mask and be brutally honest about my life with Ankylosing Spondylitis.

I wanted a place where I could experience the “me too” feeling. Being surrounded by people who got it. Thankfully I found that and so much more. Oh my gosh it was so amazing to watch our advocates/activist fight to raise awareness. I was inspired to do something, but I had no clue what. I came across a post about Sara Frankl. It inspired me to make a gratitude post for those who fight so hard for us. World War III ensued; it was horrible. 

That was the first time I wanted to leave, It was also the first time that I was “labeled” by the community. I was labeled a fear monger. What a horrible word and the first of many labels that I would be assigned to by the community. But thankfully I managed to survive the first of many battles to come and out of that terrible experience Faces of AS was created. There it was, my project, my creation, my salvation and my albatross.

A lot of times in the beginning I was labeled as an attention seeker, mostly because people can't handle it when people are open and honest about uncomfortable topics. In time that label was removed. That project has been one of my greatest life achievements and one of my biggest regrets. It has given me as much as it has taken away from me. A few years ago the website was under attack and I made it private in order to ensure its safety. Sadly no one even seemed to notice. 

This July it will be a year since I posted a new face on the site. It was also my goal to reach 2700 Faces of AS, seemed easy enough since the support groups I belonged in had thousands and thousand of us. But as of today I have 2,224 Faces of AS and it has only taken me 11 years 5 months and 9 days to achieve. Think about that, google will tell you that the average length of a marriage is seven to eight years. I have invested more blood sweat and tears in an awareness project than most people invest in their marriage.

Sometimes I just want to scream come on people help me out, but most the time I just want to scream at myself for investing so much precious time. Time that I will never get back. Time I could have spent with family, friends or just enjoying myself.

Do I regret it? Do I wish I had never ever heard of awareness projects or found the community?

No, I don’t. I have been given so many wonderful experiences because of this community. I have found a family that means so much to me, even if we don’t share the same blood. I do wish I could go back and find the strength to have handled situations better. Sometimes I do wish I had “just’ been a person in the community admiring those who fought so hard for us, instead of trying to become one of them. Mainly that is because I was labeled as a “leader” and that came with a very heavy burden to carry. Especially since all I ever wanted was a safe place where I could remove the mask, instead I ended up having to wear a "suit of armor" in order to protect myself. Which failed miserably I might add.

I have so many emotions going through me while writing this. I feel horrible, I feel selfish, I feel like a coward, I feel as if I abandoned everyone. But I also feel betrayed, and abandoned. Sometimes I feel that no matter what I do it will never be enough.

I am so tired, emotionally, physically, and spiritually. I felt at that time I had no other choice but to walk away for my own sanity and peace of mind.  

Now it just feels like I am being punished. Maybe one day I will figure out a way to navigate and balance both of my worlds. And not worry so much about how things will affect the Faces of AS progress.

For now I will just have to patiently wait for the day I can say "Welcome Faces of AS 2700"

But if I am being honest I am afraid I may not live to see that day.

We will see....

I Am Too

I'm always telling the A.S. community you are worth whatever it takes to have a happier and healthier life. Period. 

It has been something I've said over and over, but never really believed it for the person looking back at me in the mirror.

Yesterday was a day from hell and I was stuck in the middle by no choice of mine.

It was a difficult situation, where people would end up getting confused, mad and hurt, me included. Especially hurt.

While trying to figure out the best way to handle the situation, I also decided to do what I thought was best for me. 

Sometimes the AS community has been a living hell for me but thankfully it has also been the greatest place to call home. I have found so many wonderful people and experienced some of the happiest moments of my life with them. This community gave me the courage to believe in myself and I am slowly learning that being me is enough.

But I'm mentally, spiritually, and emotionally exhausted. I feel broken, honestly. I have shattered into a million little pieces of a broken heart. 

I have felt this way for a very long time.

I feel like those little pieces of me are scattered and floating all over the universe. Lost, never found again.

Today I decided to grab that little piece of me I've been struggling to hold on to and run.....

I feel the only way I'm going to survive is by putting  myself first, at least for the time being.

For how long? I do not know.

But for today I must believe I am worth it too. Just like I keep telling all of you...

Remember to be kind to yourself while you're being kind to others.

Today I am grateful to those of you who reminded me that I'm worth whatever it takes to be happier and healthier even if it doesn’t include you for now.

A Burdened Heart

Everyday when I check my email, I see it staring back at me mocking me, you are NOT brave enough to read me!  Sadly, that is the truth. I cannot bring myself to open and read it, I have no idea what it says but I can make an educated guess. On February 27, 2023, I decided to walk away from the AS community, it was not an easy decision, but it was a decision I felt that I need to make to keep my sanity. I have fought this for many years, some have knowledge why but for the most part I am sure people were stunned, hurt, betrayed, and felt abandoned by my decision, which still haunts me daily.

I decided today was the day that I would finally read the email so I could move past this already, besides I am tired of the emotions it causes me when I open my email and see it sitting there staring back at me.

So…. I did… I can honestly say I was not shocked because over the years I have received many just like this one. Today was a little different I felt no shame or guilt, because over the past few months I have had some brutally honest discussions with myself. One of the greatest gifts that I have learned to do for myself, is to give the gift of forgiveness to me as quickly as I do others.

You should be ashamed of yourself, what a selfish thing for you to do, I expected better of you….

After reading the letter I did not know whether I should reply or not, I mean honestly what they conveyed in that email are things I have said to myself millions of times over the years. You cannot say anything to me that I haven’t said to myself.

The real question for me to answer is do I respond? Do I delete it? Do I save it? Do I even care anymore?

The truth is I do… I thought long and hard about explaining myself and what brought me to this point, but in the end, I chose to do nothing, what can I say that would honestly matter?

That the emails I receive by the hundreds daily since the year 2011, is getting to me? That each person who reaches out to me financial I wish I could help? Each person who reaches out to me needing advice, I wish I had the right words to say. The hundred emails and messages that I find that have been there forever waiting for me, and it brings me to my knees with guilt? That each letter that you can feel the desperation and the knowledge you have firsthand feeling hopeless wanting to end your life, but you say things you had wished someone had said to you? That each time you go to open a message or email you are filled with dread but most of all fear, fear of letting someone down, fear of being too late to help someone, fear you weren’t there for them, fear that they are no longer with us.

I know that on the outside looking in people have no way of knowing the hopelessness and weight that this all carries on your heart and soul.

I am ashamed that I couldn’t be strong enough to continue but the truth of it I did my best, I had no idea how hard it would be later to try to be everything everyone needed even during the times you were struggling to stay afloat. I had no idea how many it would become that would reach out, it all seemed so simple in the beginning, offer love, compassion, and kindness, I mean what could go wrong?

In the end I have decided to just delete it with no response, since there has been no other correspondence since the original email. I just can’t find it in me today, maybe one day I will.

Today I am grateful that I found it in myself to love me enough not to respond and to those who have loved me unconditionally. I pray I will be strong enough not to let the guilt I carry inside my heart destroy me in the end.

Four Years Ago

It has been four years since I fell in my backyard and ended up in the emergency room. One would think that after four years all the issues would be gone by now, but I am still dealing with issues. I guess I shouldn’t complain after all the ER doctors said I should have died. Considering all the tragic events that would happen after that day, I wish I had.

My biggest regret from that day is that I did not save the huge piece of bark that had imbedded itself under my scalp all the way to the back. Still blows me away when I think of it.

I have become terrified when the lights are turned off, afraid of tripping or falling, silly I know but that is the truth.

I still have ocular migraines and kaleidoscope vision at times, the physical scars are fading but the emotional ones continue to stay with me.

Today I am grateful that I did not die that day. 

Just One

Before you place judgement or decide it could never be you…

Remember you are one diagnosis away from being sick. 

Remember you are one pill from being a drug addict.

Remember you are one lost job from being unemployed.

Remember you are one paycheck from being homeless.

Remember you are one decision from being from the wrong side of the tracks... 

Remember It only takes one... 

One kind word, 

One kind act,

One decision 

To make a difference in someone's life.

The Truth Is The Honor Is Mine

Somedays I just want to give up and some days I think just maybe I can do this thing, you know this thing called life!
Somedays I feel like such an imposter because I fight so hard to be positive, to be giving and to be present in my own life.
Somedays I fight not to let the bitterness, anger, and pettiness fill my heart because I want to just stand up and SCREAM don’t you see ME!
Can’t you see how hard this is?
Can’t you see how much I struggle?
Can’t you see how determined I am to do this?
Can’t you see?

More times than not I wonder if people can honestly see me.

Then out of the blue, you read something that brings you to tears and fills that struggle in your soul with such a peace it's indescribable.
Some people are blessed with that feeling of peace every day and some of us fight so hard for it that we almost miss it.

And then you come across this...

Family and Friends, so much has been going on in my life this month, I don't even know where to begin. So I will start with the post below. There are some amazing women doing remarkable things to raise awareness for Ankylosing Spondylitis and Cookie-Cheryl Hopper is one of them. She is a huge inspiration to me, I actually had the privilege to post her interview with Imagine Dragons singer Dan Reynolds,(who also has AS for those that don't know) on my Thursday post for Walk AS One and I was so nervous. It's Cookie, I didn't want to mess it up! Her work in the AS community is monumental and I am humbled to be apart of the project she is working on. Putting a face to AS, an invisible disease. She was impacted by Hurricane Harvey and with any disaster, you have to get yourself and your family put back together before you can get back to your charity work, volunteer work, writing, educating, etc.. or as I like to call it, "your life's work". It's not easy to just pick back up after time lost, especially with a goal in mind, but Cookie brought out that strength, determination, drive, that I admire so much. You almost have to have those traits with a disease like this, never knowing from one day to the next how you're going to feel. Being mentally tough is not easy all the time, but when you have a community of people that understand exactly what you are going through and can lift you up and help you through your hard times, it makes it easier to get your mental strength back. Her goal is to have 2700 Faces of Ankylosing Spondylitis and their stories (optional). I am honored to be number 1827 on The Wall. Receiving that news yesterday, of all days, was exactly what I needed. Thank you Cookie for all that you do, you are an amazing woman and I am so very grateful to know you.  💙 😊

I assure you the honor is all mine!

This beautiful post brought me to tears, tears I couldn't control. Tears that were healing, comforting, healing and peaceful at the same time. My blessing of the day...

Today I am grateful for the sincere words from such a kind and loving person who took a moment to see “me.”

Lost In A Foreign World

For 2,146 days from October 8, 2011, to August 23, 2017, I worked every single day on the Faces of Ankylosing Spondylitis project in some small way.

I have worked with physical illness, family tragedies, no matter what was going on I still did my best to do something that had to do with my Faces of AS project.

The last actual Face I posted was on August 5, 2017, but I still worked on the project behind the scenes until August 24, 2017.

My life changed, my soul changed, my passion left along with the water...
The cherry on the cake was when Proboard closed the Faces of AS information board, 6 fking years wasted and gone in a minute and no one really cared. Just me.

You see little by little my soul has been dying, and I am not sure to be honest I will ever be me again.
Too much pain, betrayal, loss and destruction and sometimes things are so broken there is no hope.

I decided that no matter what I was going to work on adding Faces to the website, I have an obligation to reach my goal and then I will quietly fade away.
(At this moment I am listening to my Imagine Dragons CD and Dan just sang out the words... Then I fade away. Concinedience? Or a prediction or just stating my truth? )

Any way... I logged in to the website and opened my files and sat there for a moment, confused and disorientated.

Finally, I sent a text that said:

How can I be lost in a world I CREATED? I am numb I feel no connection or passion for this project.
I felt as if I was in a foreign world that belonged to someone else.
I went through the motions of years of habit and added face by face to the site.

By the end of the day, I add read almost 200 emails, added 20 Faces to the site and responded to all the emails.

Today I am grateful I had the courage to manage in a foreign world and to a friend who knew exactly what I was talking about.

Feel Broken

I feel broken…

There are times when I feel that if I looked in the mirror, I would look like a jigsaw puzzle.

I wish I could feel complete, but I don’t.

Some of it is my fault, some of it is my family and friends fault, and you must include society into the mixture to.

Everyone, myself included tries to fit me into this perfect little box.

I never knew how black and white, right and wrong the world really was until diagnosed with an Invisible disease.

You are either healthy or sick.

You are either visible or invisible.

You are either employable or unemployable.

You are either abled or disabled.

You are either a negative or positive person.

You are either optimistic or pessimistic.

You are either hopeful or hopeless.

You are either lazy or athletic.

You are either worthy or unworthy.

The truth of the matter at least for me, is I am all the above.

I am a person who has an invisible disease that lives in a visible world that no matter what, I am still just a shadow.

Those in my life that are healthy view me as sick.

Those in my life who are sicker than me view me as healthy.

The doctors in my life see my disease as invisible because not all my symptoms are visible.

The pharmaceutical industry views my disease a

I am not sure where I am going with this but I am going to just let my heart and soul ramble on.

I feel broken….

When I look in the mirror I am always a little surprised that I don’t look on the outside as I do on the inside.

I am sitting here trying to find the words to express what that sentence means…

The reflection I feel that should be looking back at me would be me in a jigsaw puzzle form.

A Little Bit Of Monica By My Side

I am showing my age I love that song! (Actually, it's Mambo Number Five by Lou Bega)

The words are different buy the sentiment is the same.

I had to call ATT benefit center to discuss new insurance options since Obama administration created loopholes for large corporations my life has not been the same.

My work file showed I was an outstanding employee for 24 years before my health made it impossible for me to work, so I tried to take a leave for a while to accumulate the 5 "points" I needed for a full retirement. But I couldn't do I ended up with a medical retirement with all my benefits for "life." In writing!

Fast forward the benefits I worked for so hard have been taken away and a new "let's not treat her plan" is in place.

Due to this, I am no longer on the medication used to treat my Ankylosing Spondylitis for the past 14 years and my future is frightening.

I wonder will I get back to the place in my life where the pain and AS was too much that committing suicide feels like my only option?

I called the number on the page to discuss my new options and Monica answered.
We talked in great detail and I could hear the pain and compassion in her voice and it touched me beyond words.

I am really grateful for the compassion that comes through the phone for a stranger you have never met nor will you ever meet. It restores my faith in humanity.

Today I am grateful for the blessing that is Monica.

It's The Little Things In Life That Will Kill You

I don't suffer from insomnia or have any trouble sleeping, I never had.
Yet, I have taken some type of sleep aid EVERY single night since before the year 2002.

Why you ask? Because the pain I feel when I lay down to sleep is to much to endure, so I take a sleep aid wait till I am dozing off and then lay down to sleep.

That way the time I feel the pain of laying down is minimal, because I usually fall asleep within minutes.

But the ordeal before going to sleep is a nightmare nighttime ritual that I have come to hate.

Take a big drink, swallow and take the pill and swallow and wait.....

Feels like it went down, I go lay down and it comes back up, you see my throat is narrowing due to the bone growth in my neck and makes it hard to swallow things without them getting stuck.

This little blue pill is my pill from hell.

Who would think something so little could cause so much trouble to have you choking and strangling to death, but it's the little things in life that get you and every night its a little pill that about does me in...

One day...

But today I am grateful to have this pill because without it I wouldn't be able to endure the pain of laying down to go to sleep.

This Little Light Of Mine

I reached out today to the Ankylosing Spondylitis community today. In the end, I told them how sorry I was for not being there, but it is hard to be there for others when you are struggling to be there for yourself.

At this moment in time, I only feel the darkness and that I am barely holding on, and have no light left in me. 

If I do it’s just a small shaky flicker.

But light is light and no matter how small of a flame it still shines large in the darkness.

I haven’t had the energy or courage to check messages when I tell you that I am in a dark place spiritually and emotional I am.

I saw the message..... call me and a phone number. I did not open it up but wrote the number down.

I sat there wondering do I really have anything to offer this person when I feel I am failing myself.

What if they need a ray of hope, a large bright light to help them through this darkness, what the hell do I have to offer, hypocrite of the year?

I ended up calling, I couldn’t not call and be able to live with myself. You see I try my best to be there but sometimes I miss the opportunity and then that is a pain I carry within.

It was one of my precious faces, and my heart broke that they are struggling in the darkness also.

Inside I thought what and how can I be of any help to this wonderful person, when my light is too tired to burn anymore.

I took a deep breath, opened my heart, and listened. I caught myself just speaking from the heart with no filter, and I mean NO filter. I shared information about myself that is unknown to others, I spoke of struggles and the darkness I am in now. I spoke of the time when I was living life by trying to survive the next sixty seconds and how it finally became day by day. 

I shared how Faces came about and what haunts me. I shared about my cookie happier life challenge. We laughed, cried, and had many aha moments.  While speaking to this wonderful person I have loved for many years I realized that no matter how dimmed we feel our light is or how dark a place we are living in, that light still has the power to shine. We must allow it to shine.

I don’t pretend to have the answers in life or grand adventures I’ve experienced to offer but I do have life experiences to share and my hope is by sharing them you will find something that makes your darkness a little lighter and your struggle a little bit easier.

Hours later we hung up and I would later find myself humming “This little light of mine” and I assure you at this time of my life it’s little! I laughed at myself but hum it I did and for hours. Catchy little tune for sure.

I hope that call gave him a gift of hope just as it did me.

Later on, my husband would bring in a package from the Spondylitis Society of America with an apology that it’s been in his truck for days. What could it be? I could not imagine what it could be. Maybe copy of the magazines that Dan and I are on the cover? Pamphlets to give away. I honestly had no clue because they hadn’t told me to expect anything nor did I order or ask for anything.

I kept it on the table admiring it for a while, enjoying the fun of wondering what is it!

Finally, I couldn’t take the suspense any longer and it turned out to be a box filled with love.

There were so many beautiful and touching gifts with so much thought and love put into each one of them. The kindness and love inside that box filled my heart with so much appreciation and love but gratitude mostly. 

The most amazing thing was the card... A lighthouse....with a message about how I shine a light on the AS community.

My lesson of the day is no matter how small your flame is or if you feel it's going to burn itself out, that no matter what when you share it, it becomes brighter.

Today I am grateful for the love I have in the community and that I haven't lost my hearts need to still reach out from within the darkness.

Behind My Mask

Earlier in the month of August my interview with Dan Reynolds for This AS Life, Live was released.

I had many people questioning the authenticity of my responses to his questions, but I spoke my truth from my perception of the reality of my life.

It would be several weeks later that Hurricane Harvey would destroy my normal happy life.

During the week that Hurricane Harvey was intruding on my life, I watched that video over and over, trying to remind my self that is how I truly feel. That is my belief, it has been for many years, now as I write this, I am not so sure.

Below are parts of my interview that gave me strength that now taunts me:

"It was just a way to see the positivities. And the more you do that and focus on that, that’s what you carry instead of the darkness. Because it becomes lighter for you. It really does."


My reality today: I am struggling to stay focused on the positivities of my life AFTER Hurricane Harvey, as I deal with the realities of the aftermath of this disaster has done to my life.


"When you look in the mirror and know that you’ve done your best is as good as anybody else’s best. Your best is your best."

My reality today: I am fighting so hard to remember I am doing my best, to the best of my ability due to my physical limitations, due to the aftermath of this storm, due to the limited resources I have available to me and the fact that everyone I would depend on is struggling too.

"You’re not what happens to you. You’re what you choose to be. And it’s a choice. You can’t change it. I mean, you can’t. But you can change how you embrace it, and how you let it affect you. And I don’t want it to control me."

My reality today: I am struggling not to unpack and live in the despair that surrounds my heart. I am trying to remember I can't change what has happened to me and my family. That the only thing I can control is how I let it affect me. I am trying to gain control over a life that is out of control.


It's so difficult to wrap my head around the fact that something I have spent a life time trying to live and be in spite of what has ever happened to me, that once was my source of comfort now feels like it's making a mockery of me.



I am stronger than whatever life brings my way, I am I am I am! For just for today, I need to curl up, have a long cry and be human...

I will work on being super woman tomorrow.

The friends that have given me a safe haven to allow me to remove the mask I hide behind and give me a safe haven where I am free to be afraid and upset, is what I am most grateful for today.

Today I celebrate with It's my party and I will cry if I want to cry if I want to cry if I want to!
You would cry too if it happened to you!

Today I am grateful to have been given this amazing opportunity.