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

Ten Long Years

This morning as I was looking at my anniversary calendar, I was stunned to learn that it has been 10 years since Michael Smith challenged me to collect 2700 Faces of AS. Currently, we have 2,245 which means we only need 455 more Faces of AS.

There is also something I either forgotten or did not realize is that the anniversary of the challenge was made on the anniversary of Stuart committing suicide.

He was the reason that I created Faces of AS on October 8, 2011, I wanted a place that we could safely share our truth with the world.

Stuart was a young man that lived in England and suffered with Ankylosing Spondylitis and in the end felt suicide was his only option. He was kind, gentle and very intelligent and is thought of often.

I had the honor of speaking to his mother many years ago, I was hoping she would share his story with us, but some stories are meant to stay in a mother’s broken heart.

I hope one day that I will be able to complete the challenge that Michael gave me, I have honestly lost hope, but I gave it my best.

Today I am grateful to all the brave people who helped me with Faces of Ankylosing Spondylitis.

Rest In Peace Stuart, and Michael, I hope you know you are still loved and remembered. I hope you are together supporting one another.

Take That AS

I decided today I was going to start the book that Christy shared with me. It is The Flicker in The Night. I have never read any thriller or murder mystery’s before, and I am excited to start this one. I stopped reading due to the difficulties and it just did not seem worth it anymore. I miss reading. I miss curling up with a good book while the house sleeps. It has been more years than I can remember since I experienced this luxury, something I took for granted for so many years and now is something I miss so much.

You see I have Ankylosing Spondylitis and my neck is fused, and my head barely moves, I am unable to look down, and the pain in my shoulders is unbearable trying to hold a book high enough for me to read. I have resorted to Kindle Books on my computer, but it just isn’t the same, when you hold a book in your hands you become a physical part of the story, at least I feel that way.

I sat down in my oversized recliner both excited and fearful, I am not sure if I will be able to handle the heartache of not doing something I love so much. But I have let fear dictate my life for too long so what is the worse thing that will happen, but what if????

After about twenty minutes or so I finally found a position that works! I can not tell you how happy I was and so emotional! I know it is silly, but it was. I was able to read for about an hour at a time before needing to rest. I would become very uncomfortable but then I would stop for a little while.

When I finally finished, I was stunned to see it was 5:00 AM in the morning! As I closed the book, I silently said to myself Take that AS! The rest test came when I got up, but I managed! Extremely painful but I was too happy to care!

Today I am grateful for the simple joys in life, especially the ones that I could no longer do, but now can. I can not wait for the next book!

Damaged And Still Beautiful

I went to the nail salon today, I have been going to the same lady since 1984, I just love her so. She is always so kind and compassionate with me. I was going to get a manicure and pedicure, they always have two people work on me, so I do not have to be there that long, but it is always a little over an hour. 

Life is so strange when I was younger and not in so much pain, I could not afford this luxury but now that I can it is one of the most painful things that I do.

For those who do not know I have Ankylosing Spondylitis and my spine is completely fused. My neck is fused to the point I can not look up or down or turn my head from side to side. My shoulder joints are fusing, and I can no longer raise my arms up high, just a little. 

At first sitting in that big comfy chair is wonderful, but then after about five minutes I begin to get uncomfortable due to having to put my arms and feet in a certain way for them to proceed. 

About 30 minutes in my legs are beginning to go numb, my back is throbbing, but I continue to smile and show the world I am loving this. One of the young ladies sees the tears slowly going down my face and walks over and gently washes my face for me. The compassion in her face was almost my undoing, but they all have known me a long time and help me finish.

. There is a lady that is sited across from me that has been watching, I try so hard to not let the pain show on my face, because this is supposed to be a place of happiness. When I look at her, she smiles knowingly. I attempt a smile back, but the pain is becoming unbearable. 

Finally, they smile and say you are all finished, I smiled back saying you have no idea. They are always so kind and helpful and they began to help me get up out of the chair. I moan out loud due to the sharp pain and am immediately embarrassed, but I do not look around. I stepped out of the chair and went completely down, one of the gentlemen were able to keep me from smacking my face on the floor. 

They noticed that I had smudged my nail polish on my hands and went to sit me down to repair them. I said no that is fine, they are fine. I paid and went and sat in my car gathering myself for a while. The sweet young girl came out and asked to repair them and I told her it was fine.

I sat there in the parking lot for about fifteen minutes and made my way home. Torn between wanting to cry or laugh. I wish people could understand how hard it is just to do the simple things in life, and how much pain we hide behind that smile.

I finally made it home and the puppies acted like I had been gone for years, best part of the day watching them be so excited to see me. Kisses for everyone.

I sat down to get me something to eat, and that is when I noticed how my nails looked. I had chosen a BOLD bright PINK, something I would never wear. I am trying to follow Jenna’s lead live in joy and color.

They look terrible, like a two-year-old painted them (no fault of the salon) but they looked beautiful! I decided I am not going to go back and repair them because they represent me, a little damaged and trying to be joyful too.

Today I am grateful for the kindness and compassion that these wonderful workers have shown me for almost forty years.

 

I Miss It

Seven years ago, my insurance changed, and I no longer qualified for Remicade. I was on Remicade for thirteen years.  I have so many things I could say but what is the use?

Today I am grateful for the thirteen years of treatment. 

Email

I received an email today from someone I have never met or known of. It was a letter expressing his gratitude for the Faces of AS website. He said he has been following it for years but was not at this time ready to submit his story. He just wanted me to know that he was grateful to know he is not alone in his battle against Ankylosing Spondylitis.

I wrote back and told him how much his email touched me and to thank him for reaching out to me. I hope one day I will add him to the site.

Today I am grateful for emails that reach deep in your soul and heal a part of you that you did not realize needed healing.

Deserves

 

This is Peter, he actually has the canine version of Ankylosing Spondylitis. Crazy right? He has had such a horrible life. He came to us, starving, flea infested and abused. He has had to under go heartworm treatment twice, he survived being trapped in an office with three feet of flood water, five knee surgeries (same knee), a spot on his chest that would not go away no matter what we did, only to discover it was cancer, and then he had MRSA. He would be under serious treatments for over 6 years straight non stop. If you want to know what a warrior, sufferer, supporter and SURVIVOR looks like, well here it is!

I take him everywhere I go, and he just soaks up the experience. He is teaching me about gratitude and enjoying the moment.

Today I am so grateful that this sweet little boy is healthy enough to enjoy the car rides he so deserves and I get to be the one to take him.

AS Survivor

 

This is my hope with the Faces of AS and this blog. 

Today I am grateful to those who shared their stories and experiences because if not for those brave souls I would not be an AS SURVIVOR.

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...

Takes Strength

I enjoy watching Chicago Med and tonight they had a man on there suffering from a severe case of Ankylosing Spondylitis. They were performing a difficult and dangerous spinal fusion to hopefully straighten his body so that he could be upright. It was a little touch and go but successful in the end. I know it is just a movie for most people but for my community and myself it is a reality. I know several people who have had this surgery because they had no choice but to. It was wonderful seeing my disease represented in a way that shows how serious Ankylosing Spondylitis. I am so tired of the organizations representing us with healthy athletic versions of us.

They also has a part where Maggie talked about Tough Guy Act, it really home for me.

She said What is it with the tough guy act, everyone knows what you are going through.

Where he replied yeah that is the problem everyone sees me as a sick old person.

Man do I feel those words to the core, society is always saying I am a burden because I can no longer work. Insurance is always saying no to the medicines I need so that way they can slowly kill me, or at least that is how it feels…

Anyway, she says something that really hit me to the core, she said she felt that she was just her illness. She used to feel as if every kind word or offer of help was out of pity. Then someone who was going through that told her that was the furthest thing from the truth, that she was the ONLY one defining herself as her illness. That my family, friends, and my community only wanted to do is support me and all I had to do was let them.

It is not weakness to let people be kind to you, it takes strength.

Today I am grateful for the writers on this show that cared enough to show the truth about people who struggle so hard to fit in a healthy “normal” society and to remind us that it takes strength.

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....

Beautiful Reminders

Yesterday I came across something that was sent to me via email in March 2012.

Cookie, You Give Me Hope! 

You give me hope that tomorrow the sun will shine,

Especially in bad times when I am not feeling fine!

You give me hope that I am not alone with this disease,

You help my heart see that I must do things with ease!

You give me hope and plant a little seed,

Your caring nature is what I did really need!

You give me hope that I can live with this illness,

I feel my soul needed your help to get this willingness.

You give me hope as one of my life line,

So I will never give up, I will still shine!

You give me hope that is ok to have a bad day,

I am human and to get the rest you say!

I will wear my wristband with so much pride and love,

And know you my friend are an angel from above.

I thank you Cookie, from the bottom of my heart,

For supporting AS sufferers and being so smart!

(A Gift I received today that brought me to tears and healed a hurt in my soul like nothing ever has) When I read it again I was affected the same way. Humbled tears and healing thoughts. I needed this reminder more than you will ever know.

Today I am grateful for beautiful reminders.

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.

Just What I Needed

I went to the store today; it has gotten to be such a rare thing to do. I could say it is because of quarantining due to Covid, but it is because of Ankylosing Spondylitis. Online shopping has become a life saver for me. While I was in store, I noticed a young mother with two babies in her basket. I peeked over and caught a glimpse of them. I would say they are about four months old, cutest little boys, twins.

I could not tell them apart and wondered how the heck did she. She told me their names were Kenneth and Austin. I can not explain the shock that went through me at hearing their names. She went on to explain that she was going to name them something like Gary and Larry, but she decided to name them after their grandfathers. We visited for a while, and I told her how much I appreciated her kindness and gift of allowing me to visit with her and the boys.

I sat in my car for awhile trying to gather my emotions, it was shocking enough they were identical twin boys, but their names were shocking to me. So many questions and thoughts were racing through my mind.

Would Austin be a father? Would he have named his son after my father, Kenneth? What would my identical twin brothers be like had they lived? Oh my gosh I have no words to explain how this affected me.

I spent the evening lost in memories and what ifs. I still could not get over the coincidence and the chance meeting with her. It was more than my mind could process, Kenneth is my father's name, Austin is my grandson's name and I had two identical twin brothers named Kenneth and Keith.

After a while I began to find comfort and happiness in this encounter and the blessing of seeing two beautiful little babies.

Today I am grateful for having to run to the grocery store to pick up things I needed and for things I did not know I needed.

 

Remembering

Something I shared with my people, thought I would put this here to remind myself during my struggles.

I have had my morning coffee and all dressed and ready for the day. ( Didn't believe that well neither do I but I will pretend I am ready for the day! )

I have lived my life many times one minute at a time and this is one of those times, but as I am going through the emotions I remember I have overcome everything that has ever happened to me so far, and my record is 100% and I will be damned if I mess up a perfect record.

Thank you all for your kindness, compassion, empathy, and understanding while I struggle through this difficult time of my life but most of all thank you for your encouragement and support, the love you have all given me during this time of my life will never be forgotten.

There have been many difficult situations in the AS community over the past and I battled with myself whether to stay or not, and I am so grateful I have the courage to hang in there, you have been one of the greatest blessings of my life.

You have made it possible for me to be the best me I could be, you believed in me when I didn't, you have lifted me when I have wanted to quit. AS has given me so many beautiful people in my life and so many wonderful experiences in my life and I am grateful to have been blessed with such a beautiful community. When life gets you down and it will remember to honor the struggles with honest emotions and then take a deep breath and remind yourself you got this.

Remember you are worth whatever it takes to live a life that is joyful and happy. Remember that you are stronger than the struggles you encounter in your life. Remember you have a community that is there for you and you don't have to handle these struggles alone. Remember to be kind to your self and gentle with your self as you would someone else walking in your shoes. Remember you are only human and be forgiving of your self when you feel you have failed. Remember that your best, your honest best is enough and no one should ever say it isn't. Never allow anyone or anything to define you that you are what you choose to be. Remember no one is getting out of this journey alive so live it to the best of your ability, take time to enjoy each day in small ways and in bigger ways. No one knows how long their journey will be, so make the most of it to the best of your ability. Make small experiences into BIG experiences, drink out of your favorite cup, wear your favorite shirt, eat the dessert before the meal, hug longer, speak softer, kiss often, smile more. Look harder for the blessings in your life, appreciate the people more in your life.

Remove toxic people from your life, surround yourself with people who appreciate you, who will encourage and support you. Stop. Pause. Breathe and then react slowly because once it is said or done there is no going back. Be honest with people about what you are going through or feel but be TRUTHFUL to yourself. Only demand from people what you are willing to freely give. Remember while loving others and being kind to others to be kind and loving to your self. Remember you must be your own best friend and support system. Remember this is YOUR life, your journey and your experiences no one else's never allowing anyone to influence your decisions or choices in life that will not have to live with the consequences.

Remember YOU got this... and when you need a friend reach out and if you are in a good place and see someone struggling reach out. I hope today will be a day that you will experience kindness, love, and joy. I hope it will be a day you can reflect on with gratitude and happiness. I hope during times you are struggling you will remember someone is grateful to know you... Much love to you all.

Today and every day I am grateful for the people who have made it possible for me to keep on fighting and lifting me up when I could no longer find the strength to keep on fighting.