Thankful Thursday: PAIN

I can see you now, rolling your eyes and wondering, how can she be thankful for pain……  Is it possible anything good can come from a life with pain?

Whether you live with pain as a result of a chronic illness, addiction, or a physical/mental reason, are you still able to smile?  Is it possible to find happiness after a disease has stolen a career, ended friendships, stolen memories and some days even confined me to the house?   Is it really possible to not fall apart?

I lived through the pain of addiction, relapse and recovery,  I have lived with the pain of MS.  Some would say I do it by living in denial or in some sort of fantasy world I’ve made up in my own head where everything is unicorns and rainbows.  The pain I feel most days is not physical (although I wish it was) it is emotional.  Is it possible for someone to fight addiction, secondary progressive MS and still find purpose in life? Can someone whose life has been striped away; have moments, if not days, of tears; live in confusion not remembering things, continual fatigue and weakness yet find themselves not cursing the world, their disease and everyone or anything?

Is it truly possible to be thankful for a life with pain?

The truth is, pain has helped me to grow as a person.  It has helped me to see “joy” is possible.  I will admit entering into recovery the first and then again after a relapse, the pain seemed immense.  There seemed to be no light at the end of the tunnel. Then hit with the diagnosis of MS after 4+ years of testing, the emotional roller coaster started again.

I wouldn’t know the treasure a smile could bring if I didn’t know the misery of pain. I wouldn’t know the simple pleasures of sitting outside enjoying the weather.  I wouldn’t understand the value of time spent with those I love.  I wouldn’t hold dear those moments of peace I experience if I had never lived through days of chaos and disorder. I wouldn’t appreciate the little things in life, often passed by as nonsense or unimportant by most people if I hadn’t been in a place where those things were all that kept me going.

When the pain is great enough, I am ready to practice gratitude and do some work on me.  In recovery, I know the pain is great as a result of those inner gremlins who keep rearing their ugly heads.  I may have lost LOTS of memories but those inner gremlins sure know when to jump up and make me feel even worse.  I don’t know what the next moment in my life or tomorrow will bring. I don’t know if today will end in tears or laughter. I don’t know if I will have enough strength to fight my way through. I don’t know if my hands or legs will fail me when I need them the most. There are a lot of things I simply don’t know.

There are two things I do know………#1 Using is not an option whether it is a drink or a drug or endless shopping or binge eating.  Going back to doing the things which lead me to more pain and heartache is not an option.  #2 MS will not define me. I used to be brave. I used to be a tower of strength for those around me.  I used to be a mighty warrior. But now…now I’m a warrior with weak ankles, fading memories, and tears in my eyes.

Some days I don’t know if the emotional pain is a result of the relapse or because of the MS.  The two get so jumbled together.  I said for many years, the loose of memories was a result of my addiction when the truth is, it was probably the start of my MS.  The pain of not being able to remain is greater than any physical pain I could ever feel.  Not remembering my childhood is one thing – I mean I’m getting old, right? But when you can’t remember the day your daughter was born, when pictures don’t tigger memories, when you dan’t remember your wedding day which was only 8 years ago…..the emotional pain is great.  Relying on others for their memories of particular events is tough – it is their perspective and not my own.

MS has stripped me of the person I once was.  Addiction, relapse and recovery has shown me glimmers of the me I could become or used to be. I know it sounds weird since I don’t have many memories BUT if I can feel good about me then it is a good day.  Today,  I put my foot down and refuse to sink amidst the swirling tumultuous seas pushing against me. I refuse to quit. I refuse to give up.

Today, the battle I am facing begins in my mind. I am reminding myself and you, I am more than MS (or whatever you are dealing with).  We are more than the pain. We are more than the loneliness, the struggles and the fears. We are true warriors! People may never understand the battles we face (although in recovery there are others who thankfully get us) or see the internal struggles taking place in our lives, we stay in the fight…weak, but grateful for one more day.

Wear your badge of honor, bravery and courage proudly today. Hold your head high. You are a hero…a gutsy, courageous, mighty warrior! You are strong enough. You are brave enough. You are tough enough.

Have a blessed day!

Do You Have a Bold Decision To Make?

I’m not good at making decisions!  For those who know me, it is no big surprise.  Ask me where I want to go for dinner?  I will leave it up to you, because “I can always find something which sounds good”.  Ask me what I want to do?  I will usually defer to the person asking unless there is something really pressing on my heart.  So, why is it so hard? I’m a proverbial people pleaser – one of my character defects.  I don’t want anyone to be made at me or upset or get their feelings hurt.  The end result over the years has caused me to stuff feelings and was definitely part of my relapse story.

What about you?  Are you good at making decisions?  I don’t mean just the little every day things but the BIG ones.  The life changing ones – maybe it is time to retire, or change your career or quit your job or end a relationship or admit and accept you have a problem (or a chronic disease).

Do you make your decisions base on everyone else’s expectations?  Some decisions are tough – really tough!  Some conversations are uncomfortable.  Some choices are not popular.  A true sign of spiritual and emotional growth comes when you can stop making decisions based on everyone else’s expectations.  The greatest feeling is when you can lay your head down at night and be at pease with your Higher Power.  If you compromise the peace you have with him, then you have compromised EVERYTHING!

For many years, I was spiritual, avoiding church but having a great relationship with my Higher Poser then I got involved with the church again.  No hate mail please!  I’m not against organized religion but I will admit it is then I started  to make decisions based on others expectations (again).  Over the last 9 months, I have started to have a stronger relationship with my Higher Power again.

I’m learning to be bold and courageous in my decisions.  Pray.  Listen (this is tough for me).  Don’t overanalyze! (okay so I struggle with this too).  There are days I pray for an answer and when the answer comes via a person or event or opportunity, I don’t always recognize it.  I want the SMACK on the head or the booming voice to say “here is the answer”.  LOL.

Use your common sense, which is a blessing from God to help you make the right decision. Have you ever heard the saying: “Don’t be  like the frog in a pot of cool water who didn’t notice the heat had been turned up and the water was starting to boil. All he had to do was jump out of the pot!”.  Yup.  I’ve been there a few times.

All of this is to say, if you have a decision to make…. make it based on YOUR common sense, your wishes and NOT what others will think.  This is where I am at right now!  Decisions about my business and this blog.  My fear of letting others down has me struggling with accepting decisions I know in my heart are okay.  Fear of what the future will bring has me hesitating.  Fear of stepping into a new path where God seems to be leading me.

 

Do you have a decisions to make?  Don’t worry about what others think. Do what you know is right. No one else has to live your life—or your consequences.

I challenge you to “Rather than people-pleasing, be bold and courageous in your decisions.”  Can you do it?  If you need support, comment below and we will help!

 

Have a ThirtyOne-derful day!

Unlocking the Power of Praise

Thank you Rachel Wojo for today’s message….

My 21-year-old daughter, Taylor, stares at me as she sits propped up in her hospital bed. Not many young adults would ask for a hospital bed in their room, but she hasn’t been able to ask me for anything in 15 years. I attempt to read the communication in her eyes and will her body language to reveal her needs and desires. She’s been a frontline disease fighter since birth and since age 4, we’ve faced the eventual outcome of no cure and no treatment. My thoughts turn to prayer, an instinctive reflex I’ve cultivated for all these years, but somehow, I can only be silent.

Though I can find no words in the moment, I long for God’s presence. Just as my girl will move her leg over to touch mine so she can simply know that I am here, so I find myself seeking moments to be still and know that He is God and yes, He is here. I remind myself that prayer begins with praise. Our Father who art in Heaven, hallowed be Your Name.

How do I find words to praise God when my child, my heart existing outside my body, is suffering? Limbs that once ran everywhere have withered down to skin and bone. Hands that once grabbed with lightning speed can barely hold a sippy cup to her mouth. Voice box that once chimed “Mom-my” is lost, never to be returned on this earth. Though together we’ve practiced gratitude day after day, frankly, we are running out of things to be thankful for.

But Jesus didn’t begin His prayer with thanksgiving. And the praise didn’t begin with things God has given. Nor did it begin with God’s work. Jesus first reminded God of Who He is. With this epiphany, the prayer that I couldn’t begin starts to form as I grip my girl’s hand. Just as Jesus began his prayer with words of adoration, so my prayer reflex is stimulated to follow his model.

Praise is the most powerful tool in our prayer arsenal. Through Jesus, therefore, let us continually offer to God a sacrifice of praise—the fruit of lips that openly profess his name. (Hebrews 13:15, NIV) As today’s truth explains, the blood of Jesus sacrificed on the cross provides our direct access to God. As a result, we are privileged to enter the presence of our Father and whisper praises directly to Him! When we stand before the Almighty God, we come as we are. It doesn’t mean we have a complete understanding of His work in our lives. It simply means our hearts are trusting and believing Him to be the ever-present, never-changing God who loves us beyond our comprehension.

When we can’t find praise in our hearts because we don’t understand what God is doing, we can always praise God for Who He is. He is the God Who never changes and has loved us since the beginning of time. Praise Him!

Have a ThirtyOne-derful day!

HIV/AIDS Still Exists

Today December 1st is World AIDS Day.  For some, it is just another day.  For others, it is a time to remember those who have fought the battle and lost, encourage those who continue to fight and educate to end AIDS in our lifetime.  Since leaving the field of HIV/AIDS many years ago, I seem to have become complacent about what was a passion.

Living with a chronic illness has brought back many memories for me. So today, I am reflecting on the lessons I learned when I worked for the South Jersey AIDS Alliance.  As a new “inexperienced” Social Worker and a recovering addict, I was the “crazy white lady” who stepped into Bridgeton wanting to help the world.  Yes, it is what many of my clients thought of me and willing shared as we got to know each other.  I didn’t see any of the people who walked through our doors as “diseased”, “hopeless” or less than.  I saw them as people who because of their bad choices were sick.  “There by the grace of God go I” was a constant reminder for me since I had made many bad choices over the years.  So what could I do in a little office (actually half a duplex) with little funding, the only paid staff, a handful of volunteers (who in many cases were also clients) and a heart wanting to save them all.  In those early years, AIDS was not a “manageable disease” for many it was a death sentence.  It took babies from their mothers.  Moms and dads from their kids.  It took people from all walks of life – yet no one talked about it.  I can remember the first few funerals where the family said “they died of cancer” because they did not want their loved one to be remembered for the stigma of HIV/AIDS.  This was the world I dedicated many years of my professional life too.  Belinda grew up joining me in this battle to end the stigma of HIV/AIDS.  She played with kids who were HIV-positive, she shared her toys, she helped with fundraising, as well as sorting and delivering holiday toys.  She grew up with a passion for helping people which I admire.

Fast forward to today when little is spoken about HIV/AIDS.  It is a manageable disease so we seldom hear the prevention message.  There are medicines to keep you going, so why worry, right?  The theme for World AIDS Day 2017 is “Now Let’s End It”

Globally, there are an estimated 36.7 million people who have the virus. Despite the virus only being identified in 1984, more than 35 million people have died of HIV or AIDS, making it one of the most destructive pandemics in history. Only 1 in 4 people are making their way through the obstacles called health care and medications.  Let’s not be complacent.  Let’s continue to share how HIV can be transmitted.  Let’s all work together for a day when there is an AIDS-Free Generation.

World AIDS Day is important because it reminds us and government HIV has not gone away – there is still a vital need to raise money, increase awareness, fight prejudice and improve education.

What are you willing to do to help?  Today, I remember those who fought a great fight – Jackie Wise, Matt McCrossen, Sam, Maria and all of the others who walked through the doors of my office in Bridgeton and the other SJAA offices.  I honor those who continue to fight especially Jeff, Donna and Veronica.  They continue to inspire me with their strength and determination after 26 years.

Honor someone you know who is living with HIV/AIDS or who has lost the fight.  Share their names so we too can honor them.

Have a ThirtyOne-derful day!

 

 

 

Are You Tired of Being Told to Pace Yourself?

I started physical therapy to strengthen my muscles to try to get rid of some of the “wobbles” from the MS.  The favorite line from the trainers is “pace yourself”.  I’m sure I have heard this before in my life but NOW it seems to grate on me.

In my business, I have been told to pace myself.  In other words, don’t play the comparison game.  Quick and easy will get the sales now but it won’t usually get you long term success.  After almost 7 years of being in direct sales, I am grateful I paced myself.

When I started with MS symptoms (or had flare ups), the phrase “remember to pace yourself” became the one thing people would always say.  I don’t know about everyone else, but I know when someone says it to me, I tend to speed things up! I know they mean well, but it can be frustrating – a constant reminder we can’t do things like we used to.  As unpleasant as it is to hear, the sentiment is not all bad. Taking some time to do things our way at our own speed can be extremely helpful and make for a more rewarding life. It’s something not only those with a chronic illness need to remember, but also those around us need to learn.

Runners, pace themselves in a race.  Those struggling to lose weight, pace themselves.  So why is it, those of us with chronic conditions seem to think it is a bad thing to do. I know it just can’t be me, right?

#1 Feeling different from everyone else

I have always been non-stop, on the go.  From to being a career woman, then a single mom and then working full-time and commuting.  I always seemed to have enough time to do everything.  I will admit, I don’t like the idea of having to slow down, or of feeling different from everyone else.  Heaven forbid if I feel like I am holding anyone up. So despite everyone’s best intentions when they say pace yourself, it makes me feel bad. It’s a huge reminder we’re different. On any given day, it can make me feel like I’m a burden to the person saying it.  I know they mean well, BUT if you know someone with a chronic illness, don’t tell them to “pace themselves”.  Just as a runner knows their body, we know our bodies.  Believe me, if we need to slow down, trust me, our body will let us know.

#2 Going at our own speed

I joke with my mom who is 81, I inspire to run up the steps like she does.  There was a time when I could BUT life with a chronic illness, has taught me I need to pace myself. It is the key to enjoying life.  Whether it is a good day or a bad day, we can still accomplish a lot if we simply take our time and do it at our own speed.  Moving at a slower speed, taking breaks in between doing things can be frustrating, but more often than not, it can be rewarding. The key is having others understand we may be just a little slower or do things a little bit differently to get the task done.  I will admit I am still a work in progress where this is concerned…

#3 Little accomplishments can mean a lot

I have often joked about our “dust bunnies” but I will admit I do like staying on top of keeping things neat and tidy.  Fall cleaning (or whatever season) can be a pretty overwhelming task for someone like me even before MS.  My desire is to do it but I easily squirrel (forgetting how to do tasks or just get tired).  So now, I set small tasks to get done – scrub bathroom, wash kitchen floor, etc.  It won’t happen quickly, but it will get done. I need to enjoy the little accomplishments.   I know it may sound bizarre, but little accomplishments mean a lot.  Why is it “baby steps” are good things in life, showing we are moving towards a goal yet with a chronic illness, we tend to think of it negatively?

#4 Advice for family and friends

Patience!  Not one of my strong points.  If you know someone with a chronic illness, you will definitely need to practice patience.  It’s more important for friends and family to understand and respect our need to pace ourself, than it is for them to remind us to do it.  Yes, I do sometimes need to be reminded since slowing down can be helpful.  I would rather discover it on my own, no matter how painful it might be.  Sounds crazy, right?  So friends and family, please don’t tell us to slow down, but understand if we do.

Just as we would cheer for a runner who is pacing themselves towards the finish line…  let’s try to remember there is nothing wrong with going at our own pace when we have a chronic illness.

Today’s post was the result of some conversations with friends who also have chronic illnesses.  I hope it shed some light for someone, especially those who have family or friends who are newly diagnosed.  I believe God put this on my heart today to share for a reason.

Have a ThirtyOne-derful day!