True Friends

When we think of friendship, we usually think of the people in our lives who have seen us through thick and thin. The people who we have perhaps grown up with, gone to school or university with, travelled with, played sports with or worked with for years. We think of the people who we expect will always be there for us.

The truth is that friends often come and go. Sometimes that’s because we have relocated or had a difference of opinion or have just naturally grown apart. We grow up, we change, we get married, have kids and often we find new friends. The memories of special friendships stay with us though, as a photograph album in our mind to look back over when we want to be reminded of happy times spent together.

Sometimes, health issues can remove us from a “normal” social life that is often necessary to hold friendships together. Sometimes health can get so complex that friends no longer know what to say, what to ask,  or are so distressed about what is happening to their friend that it becomes easier to slowly let the friendship slip. We might think that sounds terrible but I think it’s also understandable. Chronic disease changes everything, for everyone, just like other life changing moments can do.

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As a new life evolves for the person with the chronic disease, around medical appointments and accepting new ways of living with a disability, some beautiful friends will remain but more than likely new, special friendships will emerge….if we let them.

It can be all too easy as a chronic disease sufferer to feel hard done by and that response is also completely understandable. Life is often changing at an accelerating rate, let’s face it… life is changing forever!

So, we have a couple of choices. Grieve over friendships that are drifting or are lost. That grief process needs to happen but once we have done the grieving, there comes a time to reach out and connect again, within our new limitations and with new expectations, of ourselves and others.

My online support forum is celebrating it’s first anniversary today, the 14th January 2018. I’m so excited that it’s survived and thrived through its first year. I’m so excited to see such meaningful conversations daily and beautiful friendships and connections being made.

My aim in creating this forum 12 months ago, was simply to help others as that’s what I love to do. I’ve always believed caring for others is what I’ve been called to do…it’s my life’s purpose. Caring was at the centre of my work and life before chronic illness came along. Continuing to care in some purposeful way, now helps me make sense of this new phase of my life.

The added bonus of the support forum, has not only been connecting others but also finding my own connections with like minded beautiful people, who I now call “true friends”. Such a blessing!

I’m so looking forward to sharing the new year’s adventures with true friends old and new, both in person and online.

Sam xx

 A FRIEND IS A GIFT OF GOD

 A poem from “Someone Cares” by Helen Steiner Rice

 Among the great and glorious gifts Our Heavenly Father sends

Is the gift of understanding that we find in loving friends

For in this world of trouble that is filled with anxious care

Everyone needs a friend in whom they’re free to share

The little secret heartaches that lay heavy on their mind,

Not just a mere acquaintance but someone who’s “JUST OUR KIND“

For somehow, in the generous heart of loving, faithful friends

The good GOD in his charity and wisdom always sends

A sense of understanding and the power of perception

And mixes these fine qualities with kindness and affection

So when we need some sympathy or a friendly hand to touch,

Or an ear that listens tenderly and speaks words that mean so much,

We seek our true and trusted friend in the knowledge that we’ll find

A heart that sympathetic and an understanding mind………

And often just without a word There seems to be a union

Of thoughts and kindred feelings for GOD gives TRUE FRIENDS communion.

 

If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum Medical Musings with Friends. It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

I’m a Contributor at “The Mighty”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

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The Season of Advent – Hope, Peace, Joy and Love

In the hustle and bustle of preparing for Christmas I love the Advent season. This is the season the Christian church celebrate in the lead up to Christmas. It’s the start of the Church year and Advent Sunday marks the four Sunday’s before Christmas Day.

It’s a season of reflection and expectation. Advent is latin for Coming. Christmas celebrates the coming of Jesus as a new born baby in the most miraculous circumstances. A baby was to be born who was the Son of God and who brought the hope of salvation and everlasting life to a dark and cruel world.

On each of the four Sundays of Advent a candle on the advent wreath is lit. The first candle symbolises Hope. 💗

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On the second Sunday of Advent Christians around the world continue to prepare for the joy ahead of celebrating the birth of Jesus on Christmas Day. On this day the candle of peace is lit. The words below come from a beautiful carol, ” I heard the bells on Christmas Day”

It has a lovely melody and stirring words. It’s another of my Christmas Day solo pieces in years gone by.  Just reading the words conjures up wonderful memories of my Dad playing the organ for me, while I rehearsed at home in preparation for the Carol Service. Special times 💗

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On the 3rd Sunday in Advent, the candle lit on the advent wreath represents joy.

When we think of chronic disease and pain it can be hard to imagine feeling a sense of joy. The Christmas message isn’t talking about a frivolous passing joy that comes from enjoying a moment, it’s talking about a deep joy that comes from knowing that God cares for us and despite how bad our circumstances are now, there is hope for a brighter future.

“The angels sang a message of JOY! “…the angel said to them, ‘Do not be afraid. I bring you good news of great joy that will be for all the people. Today in the town of David a Saviour has been born to you; he is Christ the Lord. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger.’       (Luke 2:7-9)

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On the fourth Sunday of Advent we light the candle representing love.

What an amazing gift of love that God should send His son to give us hope, peace, joy and love. What amazing love that this baby born on Christmas Day, was sent to save us from our sins and give us the hope of eternal life.

What amazing examples Jesus showed us, while he walked on earth, of how to love others. Loving our neighbours as ourselves. Showing grace and mercy to those we don’t understand, those in need, those who need love.

This is the essence and beauty of Christmas. This is so worth celebrating!

Happy Christmas…with love xx 🔔🎄🔔

 “For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.”    (John 3:16)

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A Merry Little Chronic Christmas

I was taking a little blogging break but I started musing about Christmas this morning and well… here I am again!

As Christmas fast approaches I imagine most of us, in the chronic illness community, are musing about what we want to realistically achieve over the next two weeks.

For those of us with Chronic Illness it can be an incredibly overwhelming time. Just trying to be happy for others, when your body is screaming at you, is enough to make you want to run and hide.

Even if, like me, you have a super quiet Christmas for two planned, there are still concerns. Will I be able to function on the day? Will I manage to stay out of hospital?

No amount of pacing or planning can ensure my body will do the right thing. I will pace though and my husband and I have removed all expectations. We will go with the flow and it doesn’t matter if it turns out to be a struggling day does it? Does it?

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Hmmm…..let’s be honest….it does matter. I’d be kidding myself to say it doesn’t. It matters a lot to me. I want my husband and I to enjoy Christmas dinner at the very least. He sacrifices so much without any complaining so I want him to enjoy turkey with the trimmings.

I want to feel as pain free as possible on the day so I can enjoy opening presents and chatting to family on the phone. I’d like the energy to look forward to phone calls.

I want to have some energy in reserve to really enjoy the Christmas DVD we’ve chosen to watch on Christmas night. I don’t want to be wishing it would be over because I can’t find a comfortable position for my broken bones.

Then there’s the things I miss. I miss not being able to travel to see my Dad & his wife for Christmas. They are so close but so far and that’s really hard. I miss not getting to a Carol Service and Christmas Eve/Day Church Service. I miss not being able to go to large shopping malls and enjoy the Christmas atmosphere.

Even for those of us who don’t suffer mental illness, the lead up to Christmas can be a melancholy time. It’s important to acknowledge all those feelings. They are real, important & very, very normal for the chronic illness sufferer.

If you are feeling a little melancholy….you are not alone.
My hope & prayer for us all is that whether surrounded by loved ones or home alone,  we will all have a merry little “Chronic” Christmas Day, no matter what it looks like, when it finally arrives.

Lots of love xx 💗💗

 

If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

I’m a Contributor at “The Mighty”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

My 5 Favourite Posts

As Christmas and year end comes around, I’m in a reflective mood.

After a tough few weeks with my health, I’m also suffering from writers block, so I’ve decided to take a short blogging break until after Christmas.

It’s been a great year for me from a writing perspective. I started writing for The Mighty at the start of the year and have amazingly had 24 articles published. Way beyond my expectations!! You can find these articles at My Author Page

As far as my blog is concerned, I thought I’d round off the year with selecting my 5 favourite posts to share with you. They may not necessarily have been the most popular but they are the posts that are special to me for various reasons.

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So in no particular order, here are my 5 favourite posts of 2017:

Chatter, Clatter & Clarity

How Sweet it is to Trust in Jesus

Thank you Sweetheart

The End or the Start of a New Beginning

Patience and Purpose

I want to thank you, my readers, for your love, encouragement and support during 2017. I have so enjoyed sharing with you all, reading your comments and meeting so many other bloggers through various networks.

I wish you and your loved ones a very happy and relaxed Christmas and I look forward to sharing more with you very soon 💗

Take care

Sam xx

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Christmas Expectations

It’s on its way! There is no stopping it! Christmas is coming!

That thought will either excite you or leave you trembling with trepidation. There may be an in between reaction but generally the Christmas Season and the lead up to the big day is forefront of mind by mid November.

I love Christmas. First and foremost I love the reason for the season. I love that we are celebrating the birth of Jesus. My Christmas pasts were filled with preparing Sunday School classes for the Christmas Eve Nativity play. Choir rehearsals for Carols in the Park. Helping my husband prepare Orders of Service for all the Christmas services so that those who attended, who weren’t usual church goers, wouldn’t feel lost and could participate and relax.

I had rehearsals to attend for my annual Christmas Eve Service solo performance of “It came upon a midnight clear”.

In between all that I was Christmas shopping, wrapping presents, decking the halls, baking our Christmas cake. I was also working full-time and involved in numerous Christmas celebrations at work.

Every year we would decorate the Banking department I managed. We’d put on Christmas treats throughout December for the 350 staff. Morning teas, afternoon teas, team parties etc.

I set up a department Christmas choir at work and complete with singers, guitarists, a violinist, bass player and trumpeter, we moved through each level of my departments building, spreading Christmas cheer  through song, like the Victorian Christmas carolers of old. So much fun!

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On Christmas Day I would head to church in the morning with my husband. After the service we headed together into my work, where we would hand out Chrismas gifts to the staff on duty. We’d help set up a Christmas buffet lunch for everyone to enjoy and then we jumped in the car for a 2 hour drive to spend Christmas with my family.

It was full on. It was focused on giving and celebrating. It was joyous and rewarding on so many levels.

Fast forward to today and those wonderful memories remind me that so much has changed. My love of Christmas remains. My joy in celebrating the birth of Jesus is even deeper. My body, chronic disease and disability however prevent me from participating in those wondetful Christmas past activities.

So that could sound like the end of a very sad story. It’s not though. While I loved that full on Christmas celebration, I equally love the quieter relaxed Christmas that is my new norm.

I remind myself how blessed I am to have experienced such joy sharing Christmas so actively with so many. I remind myself how blessed I am now to have a wonderful husband to spend a quiet romantic “Christmas for two” with.

If I had expectations of myself that were unrealistic, this season would be awful. I’d either push myself beyond my capabilities and end up sick or in hospital or I’d just feel miserable thinking of all I can’t do.

This is my 4th Christmas season with my bone disease. The first two Christmas seasons following my leg break were an adjustment period. I grieved my Christmas pasts. I missed not being able to go to church. I missed family and friends. My beautiful step family came from interstate on the second Christmas post my leg break and that was so special. It helped me have the best of both worlds that year. We had a quiet Christmas Day as they arrived Boxing Day. It was a lovely new memory created within my new limitations. It was such a timely visit as it helped me adjust my Christmas Expectations further from old life to new life. It was a gentle bridge.

Last year I really embraced our “Christmas for Two”. It was one of the most special times Peter and I have ever had. We had no set expectations. We decorated the tree, we bought beautiful food, I set a table for two with all the trimmings, we listened to Carols, opened way too many presents ( I went a little overboard on online shopping) and we watched a Christmas movie in the evening.

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There was no set agenda. If we ate at 3pm it didn’t matter. If we didn’t get dressed up it didn’t matter. If I was really unwell or struggling with pain, it didn’t matter. Expectations were non existent. All that mattered was that we were together, relaxing and celebrating in whatever way we could. All that mattered was that Christmas Day, the most wonderful day of the year had arrived.

 

I’m a Contributor at “The Mighty”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

 

Great Expectations

My title might suggest a Charles Dickens book review but rest assured that is not where I am heading with this.

When you live with chronic illness, over time your expectations, of yourself and your medical team in particular, begin to diminish.

In my case it’s not because I don’t trust my medical team or because they have disappointed me. That couldn’t be further from the truth. They have all been amazing in their care, support and passionate desire to try to find treatment options for me.

Expectations diminish though when you know your disease is progressive, rare and disability is steadily increasing before your eyes. There is no escaping that reality. I wake up to it everyday.

Ever the optimist, I do however wake each day hoping that I might get a slight pain reprieve or be able to achieve a few things on my “to do list”. That’s called hope and on some days that hope is realised.

It’s been a while though since I have had the feeling of “Great Expectations”, particularly when it comes to medical appointments. Usually they are routine, follow up type appointments. Just checking blood tests, looking at latest xrays and all agreeing, “yes, the legs still broken and yes the disease is progressing. Sorry still no treatment or cure”.

It’s not quite as matter of fact as that. I do have a great relationship with my Specialists and GP so we also throw around ideas and have a good chat. In general I look forward to my appointments.

This week though I have an appointment that I am really looking forward to. It’s with my Orthopaedic Surgeon who has been amazing in his support of me over the past 3 years. He has been devastated at the little progress my femur has made in trying to heal.

He has consulted so many other medical professionals about my case. He was brave enough to perform radical surgery a year ago, on my other leg, to prevent the bone disease from snapping that one too. As a result of that he inspired other Surgeons to take similar action with complex patients they were looking after.

I couldn’t ask for more. I know that he has felt utter disappointment at not having any further solutions or strategies to manage my non union femur.

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So when I phoned his office last week to ask for an appointment to have a chat with him about issues with my right hip, I did not expect what happened. His Office Manager was so pleased I’d phoned…..she was about to call me!! Talk about timing. My Surgeon had been on an Orthopeadic conference the week before and apparently my case had been discussed. He had told his Office Manager, just before I phoned,  that he wanted to talk to me. He had to talk to some other colleagues first so an appointment has been made for Tuesday.

I have no idea where this conversation on Tuesday will lead. I feel the simmerings of a mixture of excitement, hope and expectation. My Surgeon’s Office Manager sounded excited and hopeful when I was talking to her. That gives me hope. I know her well after 3 years and she is a genuine, caring lady.

Dare I attend the appointment with “Great Expectations”? Yes, I think I can. I’m being realistic. I know he won’t have a bone disease cure but he may have a new solution to encourage my left femur break to heal. If that break would heal it would reduce some of my pain, at least in that leg and that would be wonderful.

So in the lead up to the appointment I’m indulging in a little day dreaming or surmising as to what might be discussed. I have a few ideas like perhaps a stem cell transplant but I am going with an open-mind.

I have “Great Expectations” that if nothing else it will be an interesting and informative consultation.

I’ll keep you posted xx

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If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

I’m a Contributor at “The Mighty”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

RA Blog Week 2017 – A Feast of Great Blogs

AUTHOR 2017 -J

This week I’ve had the pleasure of participating in the Annual RA Blog Week. It’s a wonderful event for bloggers from around the world to share their insights on what it’s like living with Rheumatoid Arthritis & often other associated autoimmune diseases.

Each day of the week a topic is chosen for bloggers to write about. On the last day of the week we are asked to highlight some of the great blogs we have read during the blogging event.

This year I can’t choose. I was really impressed with the varying writing styles & insights that each blogger brought to the event.

So, I’ve decided to highlight & applaud everyone 😊

Below are the topics for each day of the week. If you click on the topic title for each day it will take you to the most inspiring & awesome blogs.

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  • Monday September 25, 2017

Mental Health – How do you manage to maintain your mental health while dealing with autoimmune disease? Discuss how dealing with RA every day makes you emotional. Do you hide your emotions?

  • Tuesday September 26, 2017

Tips and tricks – What are the ways you have learned to work around the physical difficulties and limitations of your autoimmune condition.

  • Wednesday September 27, 2017

Partners  Where would we be without our partners? They are often not just partners but caregivers. Tell your partners story. And if you do not have a partner what will your ideal partner be like, or do you even want one?

  • Thursday September 28, 2017

Hobbies Hobbies are healthy or maybe they are not? What is your hobby and how does it help you with your autoimmune conditions? If you do not have a hobby imagine a great hobby for a person dealing with RA.

  • Friday September 31, 2017

Great Blogs I have read this week – RABlog week is, at its heart, a way for bloggers to connect. Tell others about the great blogs you have read over the week. Perhaps you have found a gem from a blogger you did not know before or maybe one of your friends shared special insight. Give the high five in print to another blogger or two who participated in 2017 RABlog week.

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These questions & links to the various blogs provide such a great resource for the chronic illness community, as well as for those wanting to understand, at a deeper level, what family or friends are experiencing living with chronic disease.

Well done 2017 RA Blog Week participants. Such a huge effort & you are all great ambassadors in raising awareness & encouraging others 💗

A massive thank you as well to Rick Phillips. Rick organises this event every year while dealing with his own health challenges, living with Rheumatoid Arthritis & Diabetes. He is an amazing man & a gift to the chronic illness blogging community.  Check out Rick’s blog at RA Diabetes

Well done Rick on another hugely successful event!

Happy reading everyone 😊

Sam xx

If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

 

I’m a Contributor at “The Mighty”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

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