The Spinal Surgery Recovery Road

I’m a week post L4/L5 laminectomy and decompression surgery. I’ve been home from hospital for 5 days and the road to recovery has begun. Well sort of. I really feel like I’m still in survival mode.

My Surgeon tells me we did the right thing proceeding with this surgery. My spinal cord was severely compressed and my legs are already feeling stronger and more stable than they were when standing and walking with aids.

A good early sign. The pain in my lumbar surgical site is quite another story. The pain is excruciating and I’m in for a long 3 months of healing, hopefully with no complications.

It’s still a little too early to say if the surgery has been a complete success. My Surgeon is being cautious and so am I. My body has a habit of behaving badly or surprising us with the most unexpected reactions, so we are right to be cautious.

Recovery Is A Process

One thing I have learned over the years is that recoveries can’t be hurried.  They need to respected. Time needs to be given and all precautions and post surgical instructions must be adhered to.

So from a medical theory perspective, a recovery sounds straight forward and very practical.

There is another side to the medical recovery process. It’s the personal effect major surgery has on your life, especially when you’ve had multiple surgeries over a short space of time.

The fatigue of constant pain from recoveries and often complications, seems never ending. I’m again struggling through the effects of waning General Anaesthetic and strong pain killers. Stomach pain, colostomy complications, lack of sleep plus sitting, standing, walking, bending and daily task restrictions, can really make the recovery process ahead a cumbersome time.

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Reflecting Through Recovery

Surgical recovery restrictions can give us the gift of time. We can choose to be frustrated and bitter about facing yet another recovery period, or we can choose to use the time wisely.

I’m choosing to take time to reflect, in the hope of discovering what my path for the best future possible will look like.

Reflection allows me to grieve the loss of my ability to run, to even walk normally, to shop, to go to church, to participate in life with the energy and passion I have always enjoyed.

I don’t ask why me, I don’t feel sorry for myself.

I’m tired of being in pain but I know I’m not alone in feeling this way. I know others face similar or worse battles. Others journey with me.

Strength In Sharing

The strength of my online support forum members, coming together and openly sharing their stories, clinging to the fact that they are not alone, is heart warming.

I also administer an online forum for parents who have children with Juvenile Idiopathic Arthritis. The courage of these parents struggling with the decision to either medicate their young children with toxic chemotherapy drugs, or take the risk of them having such severe damage to their joints they will be crippled for life, is both inspiring and excruciating to read.

Underlying all the individual stories shared in these forums, is a determination and strength never to give up but to make the most of every day. To accept the pain for what it is while choosing to find joy in the simple things of life. To look at life as a new adventure. To fight for some kind of quality in each day.

All grieving what is lost while also looking forward to finding new ways to live, new activities to enjoy and embracing new friendships formed out of adversity.

The Next Three Months

My recovery road is going to feel long. I’m no doubt going to have moments of wondering was the surgery worth it. I had one of those today and I haven’t even left hospital yet! It’s normal to have those feelings and I know to deny them will hinder my recovery.

With Gods grace, I’m going to ensure I focus on respecting this recovery period so I have the best opportunity of living a full and precious life.

Taking time to reflect is so important and I believe it’s the most important part of the healing process. It renews strength, resolve, courage and new dreams and hopes never thought possible, can be forged.

Who knows what new adventures I may be inspired to pursue on my road to recovery.

Take care

Sam xx

Because of the Lord’s great love we are not consumed,
for his compassions never fail.
They are new every morning;
great is your faithfulness.

Lamentations 3:22-23 (NIV)

 

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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Surgery Can’t Come Soon Enough!

My Spinal Specialist appointment went well. I think that’s the best description under the circumstances.

I managed to walk to his office using my walker and I thought I was doing well. As I entered his room I smiled as brightly as possible.

However the pain in my eyes and my inability to move faster than a snail, revealed a very different picture to my Dr than the positive one I was working on presenting. He knew just looking at me I was doing far from well.

He grimaced and said;

So it’s clear the facet joint injections didn’t work” 

I looked up as I struggled to sit in the chair in the office and replied;

” Unfortunately not, although the anaesthetic worked a little for 24 hours”

I knew I was grasping at straws at this point and so did my Surgeon.

Nothing Like Getting Straight To The Point

I thought we would sit down and have a chat about numerous options. Well, a few options….it was clear we were getting to the end of possible treatments. In hospital we had discussed radio frequency neurotomy as the next step, so I was at least expecting to revisit this idea.

Apparently not!

My Dr turned his laptop around to show me my MRI. I had seen it before but he had been studying it. He pointed out the spinal stenosis was severe and was obviously not going to respond to conservative treatment. We had tried.

You really only have one option available to keep you out of a wheelchair. You need decompression surgery.”

Those words lingered in the air for a moment. I wasn’t expecting him to be so definite. We both knew that surgery of any kind would be risky for me. I’ve had so many and my bones just have a mind of their own. We never know what to expect when I’m opened up.

I raised this fact. He acknowledged he was concerned about what he would find. Would my bones remain stable? Would they be so hard he’ll need specialised equipment? We just don’t know.

So why are we even contemplating going ahead?

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We Have No Choice

We simply don’t have a choice. The pain from the stenosis is horrendous. The Spinal cord compression is dangerously close to requiring emergency surgery. Best to avoid that scenario. I also have a lesion at L4. It may be a bone spur or a cyst but it’s not going away and will only get worse.

I can’t even begin to think what “worse” would be like.

So, I’m having surgery. Open lumbar laminectomy and decompression spinal surgery at L4/L5, on the 9th November.

It will take 3 months to recover with the first 6 weeks being very difficult. I won’t be able to sit or stand for longer than 15 to 20 mins at a time. No twisting or bending. No housework. No lifting. No stretching up. I will only be able to sleep on my back.

My situation and recovery will be complicated by my bone disease and especially my non-union broken left femur and foot fractures.

All we can really hope for is eventual relief from the intensity of my back pain so I can better manage my leg and overarching bone pain.

Trust in the Lord with all your heart, and do not lean on your own understanding.

Proverbs 3 v 5

Taking The Risk

Sometimes in life you just have to take a risk. You have to gather all the information you have available and weigh up the cost and the benefit.

I don’t like the thought of the tough recovery period but I’ve been through major surgery before and I can do it again.

I know there is a chance the surgery won’t work but at this point I have nothing to lose.

I know my Surgeon is not entering into this lightly and he has his own concerns. That gives me confidence that I am in good hands. He cares and he will be doing every thing he can to mitigate the risks.

Does that mean I won’t get cold feet? Believe me I will definitely be thinking of reasons to run the other way.

Thankfully I do tend to face things head on so I’ll be proceeding. When I do get moments of feeling like cancelling, my body has a great way of reminding me that I have a problem.

Accepting The Inevitable

I had a goal of getting to a local shop for 10 mins this afternoon. A goal that failed miserably!

My back rendered me unable to move at all from 7pm last night. Same situation that landed me in hospital 2 weeks ago. I avoided the ambulance trip this time as I know complete rest is the answer until surgery and I want to be at home in the lead up to surgery.

It was a timely wakeup call reminding me, even if I get an hours relief from pain it just isn’t lasting.

I’d love nothing more than my back to miraculously heal. I’d love nothing more than to not need more surgery.

Sometimes we just have to accept that we can’t have or do what we might like. When our plans have to change, or our hopes are not realised, it’s not the end of the world. It’s a setback.

Finding a way to deal with chronic illness setbacks is the key to remaining positive. It’s the key to survival.

So, my advice…..no matter what difficulty you’re facing, acknowledge it, cry about it, talk about it, research all options available and then set it all aside and do something you’ll enjoy.

My husband helped me get up and dressed and seated downstairs today and we enjoyed a favourite Father Brown episode. I also enjoyed some online shopping……a couple of dresses that will be easy to slip on post surgery.

So life isn’t all that bad, despite pain and disability. There are always options to salvage setbacks and disappointments

One of the biggest positives of my recent setback is quite simple. It’s brought a change of attitude and I can honestly say…..Surgery can’t come soon enough!

Sam xx

I can do all things through him who strengthens me.

Philippians 4 v 13

If you’re looking for genuine support, care, understanding and 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 and 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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A Day Of Pondering Is Good For The Mind Body And Soul

Inspirational Quotes surround us in today’s world of Facebook, Twitter, Pinterest and Instagram. Throw away lines that are designed to both challenge and motivate us.

Do they or are we overwhelmed by the many thoughts, sayings, likes and shares that crowd our day?

Do we really take time to reflect and ponder and listen to our own thoughts?

Do we quieten our minds enough to work out what we really feel, what we really believe?

A Day Of Pondering

I’m pondering today, partly because I’m battling severe pain and partly because I need quietness to listen to my own heart, my own thoughts and to just be.

I’ve just spent 8 days in hospital dealing with complications of severe lumbar spinal stenosis. The journey isn’t over but at the moment I’m just exhausted and I need peace, perfect peace.

Hospitals are full of noise. Machines beeping, Nurses hustling and bustling along corridors, or prodding you awake at 1am to take your blood pressure.

Specialists visiting you just when you had finally managed to make it to the bathroom or were about to enjoy a meal.

Texts, phone calls, TV’s streaming different shows from different rooms. Nurse buzzers going off left, right and centre.

Blood tests being taken when least expected. Catering staff taking orders and delivering food.

Being wheeled through the hospital on your bed, to Radiology for scans and x-rays.

Cleaners coming into your room to dust and vacuum, just when you thought you were finally about to get some rest.

Noise,  noise, noise!

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I Need Quietness And Solitude…Now!!

Quietness and solitude is what’s required to regroup, recharge and renew my physical and mental strength after any lengthy hospital stay.

So as I ponder, I’ve been looking at inspirational quotes for my online support group, Medical Musings With Friends.

The more of them I read the more I feel a growing sense of emptiness. So many  lack substance and that’s ok for a light-hearted pick me up kind of day, when a throwaway line will make you smile and say “yeah, I like that”.

Today is not that kind of day. Today I need more. Today I need to go where I know I will find real strength. Where my faith will be confirmed, where my soul will be comforted.

I have many favourite verses in the Bible that keep me going through the good days, the bad days and the in between days.

2 Corinthians 4 v 17 – 18

For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.  So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

Ahhh….as I read those words and many like them I begin to relax. There is a much bigger picture for my life than my current circumstances.

The noise begins to disappear. My mind is beginning to function again. My thoughts are starting to form with some clarity. My body may still be weak and sore but my soul is being renewed.

As my soul is revitalised, my mind relaxes and my pain is better managed.

Time out to ponder is definitely good for the mind, body and soul.

It is good to be reminded that God has a plan for my life. A plan full of hope and a future.

When true inspiration is needed I know where to go! I know where to find perfect peace and solitude.

Sam xx

If you’re looking for genuine support, care, understanding and 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 and 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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From A Spine Tingling Saga To A Cracking Crisis

Sometimes the chronic illness road has twists and turns. Sometimes it has major cracks and potholes.

My latest bone disease adventure has created a new chronic illness road cliché.

I’ve found myself in the midst of what I’m calling,  a “cracking chronic fault line”

Think earthquake and you’ll get the idea.

I recently wrote about my Spine Tingling Saga.

It’s a saga which took a direction I didn’t see coming and my Specialist certainly wasn’t expecting.

Oops…That Can’t Be Good

I woke up Tuesday morning with the same horrific low back pain I’d been dealing with for 5 weeks. It wasn’t improving but I was now under the care of a Spinal Specialist and I felt comfortable with the diagnostic approach he was taking.

The L5 nerve block I had 10 days prior didn’t work. I wasn’t upset, it just meant we knew something else was the instigator of this debilitating pain. In essence this was still progress towards an answer.

By midday each day this new back pain settled enough to help me move a little. I was finding the exhaustion, from pain that was not responding to medication, so overwhelming. I just figured it was par for the course.

I had no idea what was going to happen next.

I had a much needed dentist appointment at 3pm to review my salivary gland blockage. You really can’t have enough issues all at once….don’t you think?

Anyway, I went upstairs to change my stoma bag before going out. I very carefully bent forward to open a cabinet drawer to get out my supplies.

I had only slightly bent forward when I heard and felt an enormous crack across my lower back. I can’t begin to explain the pain but all I could think was;

” Oh No, that can’t be good”

I automatically tried to stand straight, pushing through, what can only be described as a “cracking chronic fault line”

There was no doubt my body was once again having its own shattering earthquake.

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The Ambulance Debate

I called my husband, in what he said was my “Honey, my femur broke voice”.

Whatever that tone is, he knew it and knew I was in trouble.

I couldn’t lift my legs off the ground without wanting to pass out from the pain. In true form my stoma went into overdrive as it does if a major bone disease incident occurs.

I needed to change my stoma bag desperately but we also knew we needed an ambulance.

I didn’t want to call one as I inevitably knew I’d be admitted. I do love my hospital but I love my home more.

So we had a short debate of “should we, shouldn’t we” and after 10 mins of no improvement we made the 000 call.

We somehow even managed to remember to call the dentist to cancel my appointment. They were obviously very understanding under the circumstances.

You’ve Made The Right Decision

The paramedics were there within 5 minutes. I couldn’t sit at all. I was standing on very sore broken femurs, leaning on two crutches.

I’ve never had a canulla inserted before while standing but I did on this day.

They quickly heard my story of my rare bone disease and what they said in response was so beautiful;

“We do this job to help people like you, who have serious conditions. Never hesitate to call us, even if you just need us to give you extra pain meds”.

I knew we’d done the right thing to call and that I was in good hands. Their genuine care and concern caused me to cry with tears of gratitude and relief.

The reality of “here we go again” was hitting home.

A Special Reunion

I was only in ER for 30 mins when I was told I was being admitted.

As I was being transported to my hospital room, I realised this was the ward I was in when my femur broke.

The nurse entered my room to “check me in” but this wasn’t just any nurse. This was the nurse who cared for me so beautifully 4 years ago when I was brought in with a major pathological femur break. This was the nurse who put my leg in traction that day and then ran to get me the best cup of tea ever.

As she walked into my room our eyes locked and we both exclaimed;

“Oh my goodness it’s you!!”

We couldn’t believe it. We also couldn’t believe that it was 4 years ago, this very week, we were going through the broken femur saga.

Here we were again….4 years later!

I knew whatever was happening to me now, I was again in good hands. More and more staff came into the room who remembered my story and were full of care and concern for this next episode.

It was such a special reunion in the midst of yet another bone disease crisis.

So What’s Going On This Time?

Oh that we knew the answer to that!!

The jury is out. The pending verdict includes;

1. Avascular Necrosis of the right hip causing instability and impacting my lumbar spinal stenosis further.

2. A stress fracture (not yet showing on current scans)

3. The Lumbar lateral recess and central stenosis at L4/L5 , which is compressing the spinal cord, may be causing all the issues. This is the most likely scenario.

Next Steps

We do have a plan courtesy of bouncing ideas around with my Spinal Specialist.

1. A series of facet joint injections to try to settle the spinal cord compression.

2. If I get even a minor decrease in pain with the facet joints injected, my Surgeon wants me to undergo radiofrequency neurotomy from L4 to S1.

3. If all else fails, unfortunately we can’t avoid L4/L5 decompression surgery.

So at least we have a plan and you all know I absolutely love a plan.

Jeremiah 29 v 11

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.”

Staying Stress Free

It’s a known fact chronic illness is stressful. Even the most upbeat, positive person still has moments of worry and concern.

We don’t know if this latest issue can be fixed or if I am facing this intense crippling pain for the rest of my life.

What I do know is I need to be doing all I can to work out what we’re dealing with. Definitely ticking that box.

I also need to know that my husband and I are thinking about what further life changes are required if this new pain and disability is permanent. We are working on this.

Focusing on both current and future needs, while confronting, is important to staying as stress free as possible.

Hmmm….maybe the boy scouts really did have something with their motto of “Be Prepared”.

I can’t stop a “cracking chronic fault line” in my chronic illness journey, but I can work on being as prepared as possible for them.

This spine saga is far from over so stay tuned for more in my, “Chronicles of a Spine Tingling Saga” series.

There is sure to be a few chapters ahead full of twists and turns. I’m just hoping to avoid any cracks!!

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 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

Please click here to read our Privacy Policy

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A Spine Tingling Saga

Saga by definition means, a long story of heroic achievement or, a long story full of incidents.

This story is definitely the latter, no heroics to be found I assure you.

Rewind three weeks ago and I woke up to find I couldn’t turnover in bed. I had pain in my right lower back that was as severe as any I’d experienced post major surgery. As bad, if not worse, than when my femur broke.

The throbbing was so intense it reminded me of my worst dental abscess. You know, the horrific constant throbbing, full of infection!

I knew I was in trouble. I didn’t realise just how much.

Let’s Rewind and Review

Let’s rewind to nine months ago. I was in hospital trying to deal with severe pain from my bone disease. That’s a whole other saga which can be fully appreciated by reading  “A Hospital Stay To Remember”

During that hospital stay I had an MRI on my lumbar spine, as I was dealing with a similar right-sided back and hip pain.

Among other issues the MRI reported:

L4/5: Disc bulge is present which causes a mild central canal stenosis. Mild
bilateral foraminal narrowing is present though there is no neural compression.

20180921_150950.pngThis is what mild central canal stenosis looked like on my MRI nine months ago.

So it was determined by a huge team of Specialists working on my case, my bone disease was beginning to attack my spine. I also had nerve impingement at L5/S1 reported, due to a disc protrusion. I’ve had it for 12 years so I wasn’t really factoring it into the equation.

L4 was my issue and in my heart of hearts I knew something sinister was going on courtesy of my bone disease. Central canal stenosis means it is impacting the cauda equina area and if compression of that area occurs, it’s a medical emergency.

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Back To The Present

I waited 10 long days after waking up on the morning of the pain onslaught before thinking….”ok, this isn’t easing up, I better call someone”.

My first point of call was my trusty Orthopaedic Surgeon who always looks after me when I have a bone crisis.

Without hesitation he sent me for a lumbar MRI. He discounted it being my hip based on my symptoms.

Just getting to the MRI appointment was horrific. I can’t even begin to explain the pain as my husband helped me out of the car.

I later found out that with this L4 stenosis issue, sitting is the best position. Getting in and out of the sitting position and standing is excruciating. Walking is never great for me and even lying down aggravates this pain.

I quickly prayed for help to get from the car to the radiology dept. My prayers were answered. I was so looked after at the hospital with a wheelchair being brought to me as staff saw me struggling along on my walker as I passed by reception.

The scan went smoothly and I was also assisted beautifully by the caring Radiology staff. I’m pretty sure I fell asleep in the MRI. I was so grateful to be lying down, even in a tube!

The next day I received an email from my Surgeon to say my spinal cord (cauda equina) was being compressed on the right side at L4/L5.

Given my pain, I wasn’t surprised but I was concerned. Within 9 months we had gone from no neural compression to full right-sided compression.

20180921_090741You can see when comparing the two MRI images, where the issue is (green arrow courtesy of Radiologists). 

My Orthopaedic Surgeon specialises in lower limbs so he wanted me to get assessed by a Spinal Specialist. He quickly sent a referral to one of his spinal colleagues and later that day an appointment was made for me to see this new Specialist.

The Appointment

It’s never easy seeing a new Specialist, especially when you have a complex health history. This poor guy honestly looked like a deer in the headlights.

It was all too much for both of us! I was exhausted from getting there and close to tears (not something I do in any appointment). He was trying to get his head around a rare bone disease with no name and a pathological femur fracture, let alone the fact it’s still broken 4 years on and I have constant foot fractures. I mentioned I had a permanent colostomy and I think at that point he just didn’t know what to do.

So he asked me where I worked! I laughed out loud. I really shouldn’t have but it was a ludicrous question given what we’d just been talking about. You could see he thought so too but the words had left his mouth before his brain engaged.

I simply replied, “I’m medically retired” and we moved on.

He then asked me to get up on the examination table. That would require me to step up backwards on a little block ,with no rails to assist me, and try to swing my legs around and up on the bed.

I just stood there looking at it. My legs were visibly shaking from pain and fatigue. My husband, who was observing all this, said the Specialist looked at my legs, looked at the table and quickly realised this wasn’t going to happen.

The Specialist ran to get my walker to stabilise me and asked me to take a seat. The table idea was being abandoned…thank goodness.

He really was a lovely guy, I was just not your average spinal patient. So we decided an examination with me sitting was the best option.

After much prodding and poking of my hips and legs, we began looking at the MRI scans.

He was comparing both sets and also was so surprised at how fast the deterioration had taken place. He pointed out to me that the cause of the right-sided compression is a lesion on the L4 facet joint. It wasn’t there nine months ago. He believes it is likely a bone spur and my bone disease would be the cause.

I asked him can he be more definite about it being a bone spur and he said not really. MRI’s show it as a lesion. A CT Scan will be more specific.

Where To From Here?

I was so exhausted by this stage I couldn’t think straight. He asked me if I had any questions. All I could say was, “What next?”

Turned out to be the best question as we devised a plan. My health is so complex that he doesn’t want to do surgery unless we have no other choice. I’m happy with this approach as it’s in line with the view of the rest of my medical team so….tick ✔

He decided on a diagnostic plan which includes:

  • L4/L5 nerve root block injection with CT Scan
  • Pain Diary for 6 days after injection
  • Bone Scan 2 weeks later if pain hasn’t subsided
  • Follow up appointment in 4 weeks

This will help him determine any necessary next steps at the following appointment.

Getting Further Acquainted

I’m hoping next time I see him, I’ll be in less pain and he will have his head around my very peculiar medical case. Maybe not but we will at least get better acquainted and that’s always really important.

Let’s face it, he’s joining my team. I need to build a good rapport with him and get to understand how he operates just as much as he needs to understand my disease.

That takes time and as with all good working relationships, it’s often hard work in the early days.

So this saga is far from over. The reality is it will likely become, “The Spine Tingling Chronicles”.

Watch this space for the next “spine tingling” edition.

Take care

Sam xx

The Lord says, “I will guide you along the best pathway for your life.
I will advise you and watch over you.”

Psalm 32:8 (NLT)

 

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

Please click here to read our Privacy Policy

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WEGO Health Award 2018 Nominee