In Sickness And In Health, There Will Always Be Good And Difficult Seasons In Life.

I love turning over the calendar at the beginning of a new month. I have a pretty wall calendar in my study so I can anticipate revealing a new picture on the 1st day.

It’s a symbolic act in some regards, of saying goodbye to the old month, the good and the bad. I like looking forward with wonder as to what the month ahead will hold. I always hope that it will be a month full of blessings, while realistically praying for strength to handle the difficult days.

Some new months herald a season change which always adds to my musings of what lies ahead. New seasons are a reminder that nothing is stagnant.

As with the extremes of weather, not all changes in life are welcome though. There are always twists and turns, both good and bad.

The Seasons of Life

Whether we have good health or chronic illness, life has seasons. Living with chronic illness does tend to heighten the adverse impact of life’s ordinary difficulties.

Things will happen though that are not connected with our chronic disease. They are just normal life events.

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However, living with chronic illness adds a complex layer to these normal seasons of life. The good times can seem intensified as we know what it’s like to experience the depth of pain. We so often have to miss out on special events because of our illness, so when life is good, it feels extra good. It can feel euphoric.

Sometimes when life throws curve balls at us (not health related) we can, if we are not careful, make them feel larger than they really are.

Dealing With The “Ordinary” Unwanted Life Events

With chronic illness we are constantly experiencing pain, fatigue and niggling concern about our health and the impact it will have on our future. This can easily make us less tolerant of even the ordinary unexpected and unwanted life events, that interrupt the smooth flow of our day or week.

An argument with a loved one, the inconvenience of an appliance breaking down, someone on the phone being less than helpful etc, can quickly become catastrophic in the life and mind of those battling chronic disease.

If you are experiencing a season when you feel like everything is against you, just take a step back for a minute. Sit quietly and think about the issue that is distressing you. Is it as bad as you think?

Does it feel like the last straw but in actual fact the main issue is that you are just too tired to deal with it?

Taking Time Out

By taking time out to stop and think calmly about your difficult day or season, you might surprise yourself and find a way to handle it, without it being blown out of proportion. Without it causing you undue health repercussions.

On the flip side, if you are experiencing a season of joy and good times, enjoy every minute. Those times are priceless and deserve to be celebrated, especially for those living with chronic disease.

“There is a time for everything, and a season for every activity under the heavens.” Ecclesiastes 3 v 1

I hope and pray every new month and new season brings you much joy, even with the challenges that chronic disease will always bring.

Just remember to try and keep everything in perspective and stop and breathe when life’s circumstances and health issues feel overwhelming.

The title of a well known book comes to mind… “Don’t Sweat the Small Stuff”

Take care

Sam xx💗

 

If you’re looking for genuine support, care, understanding & friendship, a place to share your seasonal changes & challenges,  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 also a Contributor at “The Mighty”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

I’m a member of  the Chronic Illness Bloggers Network and the  Grace Girls Facebook Group

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It’s Never As Easy As……

How many times have you said, “No worries, that’s as easy as…….”

I know I’ve said it countless times during my life. In fact that’s how I used to live my life. Everything was seemingly easy and if it wasn’t I could quickly convince myself it was.

I had a positive can do, absolutely, yes to everything, kind of attitude to life.

I still have that attitude but my chronically ill, crumbling and disabled body, really does struggle to get with the agenda.

A Gradual Awakening

I feel blessed my change in life circumstances have gradually evolved. Many are faced with a drastic and life altering diagnosis in the blink of an eye. A serious accident or a terminal illness can so quickly turn life on its head.

My gradual awakening, while a blessing, has not been without its challenges. I suffer from fatigue due to my bone disease pain and autoimmune diseases but in general my brain manages to stay alert and functioning. At least I’m telling myself that at this stage!

The downfall of an active and alert brain, is the message “it’s not as easy as….”, fails to get through.

My brain still has a lifelong program installed, playing the opposite message, “you can do that,  it’s as easy as……”.

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Point In Case

Now I’m not completely stupid. I do know that my disabilities limit me severely. My regular readers will know I have made mountainous changes to the way I live my life.

Where I still trip up, is thinking that something as simple as packing a day bag for day surgery, will take me half an hour.

Ha…..how wrong could I be?

So here’s how that little exercise went;

  1. Got hospital day/overnight bag out of cupboard.
  2. Another bag fell on my foot…..oops a new stress fracture!
  3. Finally opened the bag (after trying to stand on my legs) to find that it was full of things I didn’t need.
  4. Emptied bag and gave surplus to requirement items to my husband. He had come to my rescue following the foot crisis.
  5. Realised that some of the things I thought were in the bag were not.
  6. Climbed on my stairlift for an unwanted trip upstairs.
  7. Gathered required items and headed back downstairs on the stairlift.
  8. Packed my pills ( you really don’t want to know or ask about that saga!)
  9. Realised I needed a few items from the shop and some prescriptions required refilling.
  10. Husband headed out to chemist, leaving me with firm instructions to sit and rest.
  11. I actually listened to his advice as I was in agony and I waited!
  12. Husband came home and I finished packing the remaining “normal” items.
  13. I say normal as next I needed to work out what I wanted to take in terms of my stoma supplies.
  14. I decided to pack each stoma change in a zip lock bag. This system works incredibly well when I’m trying to deal with bag changes and broken legs/feet. It does take time to pull together but worth the extra effort.
  15. Husband decided to tell me I perhaps should pack a little more in case they keep me in overnight. Thanks for that thought! Unfortunately with my medical history, experience tells us its a possibility.
  16. Extra packing gets underway.
  17. The whole process was spread over 4 hours!!
  18. Later that night, we were lying in bed just about to go to sleep, when I remembered I forgot to pack a spare set of underwear!
  19. Hubby got out of bed to put the items on top of the dresser so I’d see them in the morning. At this point we decided we’d completely had enough of this day/overnight bag shenanigans.
  20. Thankfully I still had 2 days to recover before my surgery!!

The Moral Of The Story

There is a moral to this story. It can probably be best summed up as;

With Chronic Illness it is never “as easy as!”

So many clichés spring to mind but I promise I will spare you those.

Basically we need to allow plenty of time to prepare for any lengthy event. Be that a holiday, surgery, a day visit to family or friends.

We can’t just think all will be ok on the day. We can’t just assume a task will take us 30 minutes like it did when we were healthy.

If we do we will set ourselves up for failure. Stress, anxiety, extra pain and fatigue and possibly not even making the event, are likely outcomes of not getting sorted days in advance.

My rule of thumb is, where possible, always allow 2 days minimum to recover from packing/preparing for an event.

We can’t guarantee how we will be on the day of the event, as Chronic Illness doesn’t like to play fair.

By being well prepared we can at least guarantee we will feel better, knowing whatever the outcome, we didn’t deliberately sabotage ourselves by leaving things to the last minute.

It’s never as easy as, but it’s not impossible with a lot of preparation”

Take care

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 regular Contributor at “The Mighty”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

I’m a member of  the Chronic Illness Bloggers Network and the  Grace Girls Facebook Group

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A “Good News” post ~ Happy Easter!!

Happy Easter

There is always a lot I can write about in regards to my health but today I just want to say “Happy Easter”.

This is such a wonderful time of the year, full of the hope of new life, as we remember what Jesus did for us on the cross, dying that we might be saved and rising on the third day to show us that there is life everlasting.

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For someone with a body that is failing at every opportunity, the joy of knowing that one day I too will have a new life and a new body is so exciting.

In the meantime I am still finding new ways to enjoy the life I have now and to never for one moment take it for granted.

However you choose to spend this Easter weekend, I hope it is full of love, peace and joy….oh and of course some chocolate eggs!

I pray that for those of you who are unwell and unable to celebrate Easter as you would like, that you would find the strength to enjoy simple things and use this time to rest and renew as best you can.

Take care

Sam x

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

I also write @ Blogs by Christian Women

Where is the rule book?

What are the rules for living with a rare bone disease? Where can I find that rule book?

That’s the question my husband and I have been contemplating over recent weeks.

I want to try and get out a bit more and when I suggested this great plan of mine, you should have seen the look on his face. It was priceless and read like a book of horrors.

“What on earth is wrong?”, I asked.

His response was slow and measured. He did want to take me out but……

He confessed he is petrified that the pole in my leg might snap ( thanks to my Surgeon for putting that thought and vision in our minds!!)

Yes, the pole is past its used by date because it’s been supporting the unhealed femur break for too long and is at risk of fatigue. Yes, it needs replacing but my Surgeon doesn’t want to do more surgery unless an emergency. I completely agree with him.  I’ve had way too many surgeries, I’ve aspirated twice under General Anaesthetic and my body needs a rest.

Facing A Dilema

So, we have a dilema of not really knowing how to live under these circumstances. No one has written a rule book. No one even knows what this disease may or may not do next.

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Pain and fatigue limits me, disables me, renders me useless most days. I guess that’s our best indicator of what we should or shouldn’t do.

Just listen to my body. Let it guide us.

That’s what we’ve decided anyway.

If I’m having a good day we’ll go out locally for a coffee or lunch. For longer outings we will have the services of a carer soon to accompany us.

The carer is partly for peace of mind if anything should go wrong while we are out. Mostly though we need help to assemble and disassemble my mobility scooter.

My husband’s osteoarthritis is severe and makes that particular task a huge challenge. We can’t afford to have him totally out of action with an injury, not if we can avoid it.

Are We Paranoid Or Just Realistic?

Do we sound paranoid? Are we though or are we just being realistic? Maybe we are just facing our new reality.

It’s quite weird how we adapt our lives in accordance to knowledge. Before my leg snapped in two, we were oblivious to that event even being possible. Blissfully just getting on with life. We had no idea I had this rare disease.

We thought Rheumatoid Arthritis and a Colostomy were restrictive enough but I was finding ways to live well and get out and about managing both.

Writing Our Own Rules

So, I guess we are writing the rule book, our rule book, together. It’s pretty short and sweet so far:

1. Listen to my body

2. Avoid crowds

3.  Accept help

4. Keep enjoying the simple things in life and be content.💗

After all is said and done, I think the best approach is to just take one day at a time and not worry about putting too many rules in place.

So, what about the rule book?

Hmm….It’s a work in progress, very flexible and I have a feeling even if we do write it, or find it, we’ll probably break the rules anyway.

I’m ok with that. Actually, I’m more than ok, I’m content with that and content to live my life as best I can, no matter the circumstances.

Sam 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

 

 

 

How Sweet it is to Trust in Jesus

Years ago, when I was much younger, 22 to be precise, I was involved in the restoration of a historic church building. It had been left derelict for years. To see it returned to its original glory as a place of worship was amazing.

After the restoration was completed, I would visit the church on my way home from work. I loved the quietness and solace that God’s house provided. Especially this building as I had invested so much of my heart and soul into the restoration process.

I had grown up in church life. My Dad was a minister and I had given my own heart to Jesus with childlike faith at the age of 7. It wasn’t until I was 21 though that I experienced a strong call to serve God, no matter what circumstances I found myself in.

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My Heart’s Song

As a 22-year-old standing in that empty church at the end of the day I would sing out loud my favorite hymn:

Tis so sweet to trust in Jesus,
Just to take Him at His Word;
Just to rest upon His promise,
And to know, “Thus saith the Lord!”

As I sang that song with complete faith that God would be with me every step of my life, I had no idea what I would be facing 26 years later. I sang those words with such conviction, not realizing they would have even more meaning to me as I lost my mobility, my career, and my life as I knew it on so many levels.

Even Still

“How can you be so positive? I’d be curled in a ball in the corner crying uncontrollably if I was you. What’s your secret?”

These are just some of the things that people say to me when they hear my story.

I was diagnosed with a rare debilitating, progressive bone disease in 2014 at the age of 48. My bones are too dense and I have a dangerously low bone turnover that has resulted in a broken left femur that spontaneously snapped in two on October 6th, 2014.

Four years later it still won’t heal.

I also have a stress fracture in my right femur and both legs have rods from hip to knee. I have constant foot fractures that won’t heal, spinal stenosis  throughout my spine with spinal cord compression in my lower back, ossificans myositis, avascular necrosis, Trigeminal Neuralgia, Rheumatoid Arthritis and Sjogrens Syndrome causing salivary gland disease.

My constant pain on a good day is 6/10.

Because my bowel ceased to function, I have a permanent colostomy.

In the past three years, I’ve had 7 surgeries on my left leg alone. There is no treatment and no cure.

Despite my chronic disease I still laugh, love and I thank God daily for the amazing blessings he has bestowed upon me.

The list is bountiful:

  • A beautiful Christian husband who is my best friend, my soul mate, my lover and my full-time carer
  • A beautiful home that provides me a safe haven
  • A wonderful purpose and ministry, caring for others through my online support forum I founded, for people with a chronic and complex disease.
  • Friends and family who uphold me in prayer
  • A peace and joy that passes all understanding
  • An acceptance of my circumstances, which is undoubtedly the greatest gift God could have given me.

 Hold to His Truth

There have been so many verses of Scripture that have been an amazing encouragement but perhaps the two I hold onto the most are:

Beloved, do not think it strange concerning the fiery trial which is to try you, as though some strange thing happened to you; but rejoice to the extent that you partake of Christ’s sufferings, that when His glory is revealed, you may also be glad with exceeding joy.  (1Peter 4 v 12,13)

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. (Jeremiah  29 v 11)

God never promises us an easy life but he does promise us a life full of purpose, joy, and hope. Our bodies were never made to last but our souls are. We can invest so much time worrying about being sick and seeking healing. Don’t get me wrong, I believe God can heal and miracles of healing when there appears to be no hope do absolutely happen. I also believe that often the greatest healing comes when God heals the heart and mind bringing peace, acceptance, and joy despite less than desirable circumstances.

trust God to be with me through my journey. He has never failed me in sickness or in health. As I have kept my eyes on the things above, He has always opened opportunities for me to serve Him. God comforts me as I pray,  sing songs of praise and read my Bible. He gives me assurance that He is the same God who was nurturing and guiding that 22 year-old all those years ago.

As my faith has grown over the years, God has trusted me with more. More experiences of life that have given me insight and empathy for others that I would never have had otherwise.

‘Tis so sweet to trust in Jesus”

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

I also write @ Blogs by Christian Women

I’m a member of  the Chronic Illness Bloggers Network,  the  Grace Girls Facebook Group and Salt and Light Linkup Group

If you would like to read a little more about my journey, here’s the link to My Story

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The End or the Start of a New Beginning?

I’m lying on my bed resting my legs and watching the sunset outside my bedroom window. It is stunning and although I’m in pain, it lifts my spirits and makes me feel very blessed to be alive.

It’s been a busy week. Hectic actually, well hectic for me. Nothing like my old working week looked like of course. Although my family have been laughing at me this week and saying that with my forum and writing, I’ve managed to create a new full-time job for myself.

That’s a good thing though. A really good thing.

New Beginnings Take Time

It’s been over 4 years since I medically retired and it has taken that long for me to reinvent myself, so to speak.

I really wasn’t sure what I was going to do in my medical retirement. When I first left work I had Rheumatoid Arthritis and a permanent colostomy but I had no idea that I was about to experience the full force of a rare bone disease. That onslaught came 10 months after I retired.

My original plans of a quiet medical retirement, with outings on good days, perhaps a bit of local travel within Australia and some daily exercise with walks around our beautiful Bayside suburb, all came crashing down the day my femur broke in two.

Two years of surgery after surgery and countless hospital stays, didn’t really provide me with the time or energy to think about what I could do with my life, particularly given that my physical disabilities had become non treatable,  permanent, progressive and incredibly restrictive.

2017 was a good year. Not because my health improved, it didnt. In fact it’s got worse. My disease was and still is really out of control. My Specialists made a decision late 2016 to avoid further surgery, unless a life threatening emergency, to give my body a rest. That has thankfully stopped the onslaught of being in constant recovery mode.

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The Gift Of Time

I was being given the gift of time. Less appointments, no hospital stays, no lengthy surgical recoveries.

2014 to 2016 is a complete blur. I can’t remember much about those two years at all. In stark contrast, 2017/2018 has given me time to think with a clearer head. No constant effects of general anesthetic fogging my brain. What a relief!

Yes I have severe pain, constant fractures, extreme exhaustion and increasing mobility issues but it’s been a delight to be home. To just go about my days at my own pace. I’ve enjoyed sunrises, sunsets and all the hours in between.

I’ve also finally been able to reinvent myself. I’m too young to just do nothing. My brain runs at a million miles an hour. It needs to be active and I need a sense of purpose and to feel like I’m still contributing to society in some way.

I’ve never been someone who was content to just focus on leisure activities. Even as a child I was always working on a project of some kind. At school I would finish assignments early and be given extras to do for the fun of it.

I know that sounds kind of sad but believe it or not I wasn’t a nerd and was even part of the “cool” group at school, or so we thought!

I’ve always had a strong sense of commitment and responsibility to make a difference in some way and that wasn’t about to be squashed by chronic disease. It’s just who I am, how I’m wired I guess.

Dreams Become Realities

My dream of writing began to take shape as my blog became more established. Writing opportunities presented and I became an ongoing contributor at The Mighty.

I joined the  Chronic Illness Bloggers Network and have been inspired by other bloggers all writing to educate readers about specific diseases and share ways to live the best life possible with their health issues.

My greatest love though and the thing that keeps me the busiest, is  Medical Musings With Friends, my online support forum for people with chronic and complex diseases. I love it. I love the members. Their stories are so precious, their support of each other so genuine.

Keeping this forum positive and relevant is my major daily focus. It is such a blessing and honour to be able to serve it’s members each and every day.

As well as the forum members this wonderful opportunity has also brought with it my team of moderators. This team are such an amazing support to me and we have all become great online friends.

Don’t Lose Hope

I had no idea 4 years ago what I was going to do with my life. It’s so easy to think that chronic and complex disease is the end of life.

It may be the end of life as you know it now but it can be the start of a whole new fulfilling life. That process takes time, even years but don’t lose hope.

Keep dreaming and thinking about what you can physically and mentally cope with and eventually you too will reinvent yourself.

The end will be the start of a new beginning!

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

I also write @ Blogs by Christian Women

I’m a member of  the Chronic Illness Bloggers Network and the  Grace Girls Facebook Group

Please click here to read our Privacy Policy

 

This link will take you to all the submitted blog posts at the RA Blog Week 2017

The Next “Leg” of My Journey

It’s nearly 3 years since my left femur snapped in two. Those first two years I can barely remember. It’s a blur of surgery after surgery, hospital stay after hospital stay, recovery after recovery. Actually recovery is probably the wrong word because I haven’t recovered. My left femur is still broken. It’s officially diagnosed as non-union.

A pole holds it together but the two pieces of bone, being compressed together by an interlocking screw at the base of the long rod, rub constantly and cause unrelenting pain.

My right leg has a femur stress fracture and that too is being supported by an internal rod & not healing. That too has aching pain on a daily basis despite a regime of strong pain killers.

My feet also have multiple constant non healing fractures, although amazingly these only really hurt occasionally.  It may be the other pain is just greater.

I have muscular atrophy and bone marrow inflammation in both legs. I have sclerosis in my spine and severe damage to most of the discs in my neck and back.

All of the above is a result of my rare bone disease. It has no cure or treatment so the disability & pain are here to stay.

Rheumatoid Arthritis sits along side my bone disease and has its own set of varying symptoms and pain issues. It is joined by Sjogrens Syndrome, Trigeminal Neuralgia, inflammatory nerve disease & Autoimmune Thyroid Disease is also starting to present itself.

Managing these disabilities and using double crutches makes getting out and about difficult, especially when I have to factor in my permanent colostomy and the care that needs at its beckon call.

So, the above are the facts, the reality of my situation. Facing facts and realities of this nature can pretty much do one of two things.

1. Cause extreme depression or;

2. Motivate you to make a plan to live  well with your Disease.

From the outset I’ve chosen to embrace my situation & plan for the future as much as possible. That plan has included a muti-faceted approach including:

  1. Medical Retirement
  2. My husband becoming my full time Carer
  3. Care agency Support
  4. Building a strong relationship with my Medical Team
  5. Installing a stair lift
  6. Installing Bathroom/Toilet rails & making other changes to our home to cater for my new needs
  7. Keeping my brain active through Blogging/Writing
  8. Setting up an online forum, Medical Musings with Friends, to connect with & help others living with chronic & complex diseases.
  9. Enjoying the little things in life everyday, caring for my soul as well as my body
  10. Planning for my future care with Permanent Residential care approved, if/when it’s needed

The list could be expanded as there are lots of other things I do to ensure I embrace life within my limitations but  you get the idea.

One thing I’ve struggled with is getting out of the house, other than for medical appointments or a coffee at our local cafe.

My husband & I have often discussed an electric wheelchair or mobility scooter but I always wanted to wait & see if my leg would heal. I felt I was giving up on the hope that it might heal if we went down that path.

As my 3 year anniversary of my bone disease diagnosis approaches, I know it’s time to face some more facts. My disease is a permanent disease. Even if my leg could heal it won’t heal properly as the bone & muscles are dead & the nature of my disease is that I have low to negligible bone turnover. Pain & disability will be my lifelong companion.

I’m not looking to go on great overseas adventures or long trips but I would like to stroll in the park with my husband or go to a Westfield shopping centre every now & again. I can’t do that on crutches. At best I can walk 100metres on a good day but that is a huge stretch for me & painful & exhausting.

So, it’s time….time for a new “leg” of my journey to begin. That leg starts with a mobility scooter. It arrived this week & we registered it today. I am the proud owner of new legs….well, wheels to be precise!

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It’s not without its challenges because the suspension capabilities of the scooter is limited & the vibrations through the seat aggravate the pain in my legs. We’re getting a gel cushion which will help alleviate that to some degree. I’m hoping with time my legs will adjust to it & allow me to stay out for longer trips. To begin with we will start slow. A short outing to the park will be wonderful. I can’t wait.

Life with chronic disease requires constant adjustment. There are never neat & easy answers. The answers to our problems are often life changing & take time to digest. For me the key is not to give up looking for solutions to new issues.

We might hope for a particular outcome only to discover that’s not possible but don’t lose hope. Find it in a different outcome. It’s a bit like a sailor adjusting the yachts sails when the wind suddenly blows in an unexpected direction. That happens with chronic disease all the time & we have to find new ways to cope when previous ways cease working.20170719_124352

So far I haven’t got any further than our garage on my new legs but stay tuned as I’m sure I’ll soon be writing a blog all about “The Adventures of Sam & her Sleigh” 😄

 

As we trust God to give us wisdom for today’s decisions, He will lead us a step at a time into what He wants us to be doing in the future.
Theodore Epp

 

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 also a Contributor at “The Mighty”  

The Mighty – Author: Samantha Moss