Rheumatoid Arthritis

The 2018 Event Of The Year is on It’s Way!

~ Sam ~ Leave a comment

2018 RABlog Week Banner

2018 RDBlog Week Sign Up Page is ready!!

It’s nearly time for #RDblogweek. My FB Forum, Medical Musings with Friends, is very excited to be a sponsor this year.

If you have Rheumatoid Arthritis and are a blogger, we’d love you to sign up and join in the fun!!💞💞

I’m re-blogging my round up of last years RA blog week. It might just help wet your appetite for this years event

Take care

Sam xx

http://www.radiabetes.com/2018-rdblog-week-sign-up-page/

My Medical Musings

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 –

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Taking A “One Day At A Time” Philosophy With Chronic Illness

~ Sam ~ 11 Comments

“Trigeminal Neuralgia…..what on earth is that?”

That was my reaction when I was hospitalised in May 2014 with the most severe right-sided face pain that I had ever experienced in my life. I had been trying to cope with it for 3 weeks with strong pain killers. I was thinking it was just another idiosyncrasy special to me and would soon pass.

Apparently it was here to stay!

I woke up at 4am on the morning I was taken to hospital by ambulance. The pain had got to such a high level, I was physically sick and running a fever as my body was trying to find a way to cope with it. The rigours had set in and all I could manage to say to my husband was “ambulance, call the ambulance”

I had no idea what was going on but I knew I needed help.

Once in Emergency at my hospital (which I must point out, I am now on first name basis with many of the nurses on the wards due to my frequent flyer status!) the doctor in ER came and listened to my story.

Within minutes he diagnosed Trigeminal Neuralgia, although that diagnosis did need to be confirmed by Specialists.

I was admitted to a ward within the hour.

A long stay lay ahead while my medical team struggled to get this first major Trigeminal Neuralgia attack under control. The first 4 days were pure hell until they found the right medication for my case. Often it’s a medication called Gabapentin that works well for TN. It unfortunately did absolutely nothing for me, despite the dose being constantly increased.

My Clinical Immunologist is the Specialist who looks after the majority of my medication and my Rheumatoid Arthritis. When he visited me on the ward the next day, he was very disappointed I had left the situation so long before coming to the hospital. He’s very hard to read at times but obviously he really does care!

How was I to know?

The Neurologist who saw me once I was admitted, was much more understanding as to why I had deferred seeking treatment. I asked him how on earth can I tell, with this idiopathic complex disease, if a symptom is one that will just go away on its own or one that is more serious?

I don’t want to be running to the Dr every 5 minutes saying that something hurts or doesn’t feel right. It’s one of the hardest parts of having such a difficult disease. He completely understood that I didn’t want to waste anyone’s time but all my Specialists re-iterated that my condition is serious and I am never to hesitate in getting treatment if a new symptom arises.

It’s all a juggling act and one I think I’m getting better at handling…until the next curve ball comes along of course.

So after an MRI, a Lumbar Puncture (which actually wasn’t as bad as I expected it would be) and 10 days in hospital, I was officially diagnosed with Trigeminal Neuralgia.

So, what on earth is that?

Trigeminal Neuralgia is inflammation of the trigeminal nerve, causing intense facial pain. It is also known as tic douloureax because the intense pain can cause you to contort your face and move your head to try to get away from the pain. That type of movement is known as a tic.

The pain of trigeminal neuralgia is intense. There is often no known cause but it can be linked to auto immune diseases, most commonly Lupus and Multiple Sclerosis.

Idiopathic trigeminal neuralgia is a clinical diagnosis and often no testing is required after your Dr has taken a history of the situation. In my case my Specialists wanted to rule out MS so that’s why I needed the MRI and Lumbar Puncture.

My Neurologist however still believed, despite my Lumbar Puncture results being ok, that I do in fact have an inflammatory nerve disease. My MRI was inconclusive for MS but falls into the “probable” category.

We decided to park all thoughts of probable MS as I had more than enough to contend with. In all reality my treatment at this point wouldn’t have changed anyway. The medication I was eventually given to treat the Trigeminal Neuralgia (Lyrica), worked and continues to work really well today.

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My Philosophy of “One Day At A Time”

As I was discharged from hospital in May 2014, with yet another diagnosis to pack in my suitcase, I had no idea what lay ahead.

Just 5 months later the strongest bone in my body (my femur) was about to have a major pathological break and I was to be diagnosed with a rare, debilitating and progressive bone disease.

It’s quite probable that my bone disease is the cause of my Trigeminal Neuralgia. My bones are so dense that they impact all kinds of nerves.

Some days, as I look back on my story, I am just so relieved that I didn’t know what lay ahead. I feel like I have been protected from being completely overwhelmed.

The philosophy of “one day at a time” is a really good one as far as I’m  concerned. I am a strong believer that we are only given in this life what we are able to cope with (even if we feel like it’s a lot to bear). So if that means complex diagnoses and health events will arrive unannounced in their own time, I’m ok with that.

Probably just as well I’m ok with that idea as they do seem to be in the habit of showing up when I least expect them!!

Take care

Sam xx

One day at a time sweet Jesus
That’s all I’m asking from you.
Just give me the strength
To do everyday what I have to do.
Yesterday’s gone sweet Jesus
And tomorrow may never be mine.
Lord help me today, show me the way
One day at a time.

One Day at a Time” is a popular Country and Western style Christian song written by Marijohn Wilkin and Kris Kristofferson

 

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.

This post was shared at the Salt and Light Linkup Group

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

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WEGO Health Award 2018 Nominee

 

I’m Good….My Body, Not So Much

~ Sam ~ 28 Comments

As a little girl, around the age of 5 or 6, my parents taught me how to answer our home phone.

I can still remember my answering script to this day. I would eagerly rush to the ringing phone and in my brightest, best grown up voice possible,  I would say:

” Hello, 1234567, can I help you?”

The caller inevitably asked:

” Is your Mum or Dad there?

My scripted response was:

” Yes, I’ll just get them, can I please ask who’s calling?”

My decorum and professionalism, at that young age, then departed as I ran excitedly through the house shouting:

” Mum, Dad, phone call…Mr/Mrs xx is on the phone”

Oh well, I’m sure the caller had a good chuckle.

The Professional Approach

That phone answering training as a little girl, really paved the way for how I would communicate in adult life.

In my business career the emphasis on professionalism and excellent customer service, further instilled that need to present oneself in an upbeat, positive manner.

Add in my own natural positive disposition and my default mode, no matter my circumstances, is to sound bright, upbeat and happy.

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The Real Picture

The other day my Home Care Liaison Manager phoned me to book some allied service home visits…Physio, OT, Podiatrist etc

I was lying on the bed as the phone was ringing, writhing in pain. My rare disease was doing its best to break me. New stress fractures in my pelvis, ankle and feet, on top of my existing non-union femur break and Rheumatoid Arthritis were all working against me.

On a good day my pain level is 5/10. When I’m waiting for my pain meds to kick in, the pain level is around 9//10.

I had only just swallowed my afternoon medication as the phone began to ring.

Thankfully it was right next to me on the bed. It’s really like an additional limb, a lifeline that I’m never without.

I was pale and feeling distressed with my pain levels, yet this is how I answered the phone:

” Sam Moss, Can I Help you?”…. (Insert smiling face and cheerful voice)

” Hi Sam, It’s Mandy, how are you?”

“Hi Mandy, I’m good, how are you?”

I’m Good, How Are You?

There we have it! I could hear these words spouting out of my mouth.

” I’m good”

I could feel myself screaming internally……”No, you’re not good. You’re far from good. You can hardly breath from the pain and you can’t move”

The really stupid thing is that my caller knows that. There was no need for me to put on a brave front. No need to pretend that all was perfect.

So Why Did I Say ” I’m Good”?

I didn’t sleep well last night because of my pain and in the early hours of the morning I began asking myself this question.

My answer is two-fold:

  1. Conditioning – I’ve been trained from an early age to answer the phone in a professional manner and my career endorsed that model.
  2. Desire – I want to be that healthy person and in many regards I still see myself like that. Mentally, I’m good. Physically….not so much!

Body and Soul

There is a beautiful old hymn called ” It is well with my Soul”.

The first verse sums up exactly what I mean when I say “I’m Good…my body, not so much”.

When peace like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to know
It is well, it is well, with my soul.

As a Christian, my faith helps me experience that sense of peace and it is well with my soul….no matter my circumstances.

My faith also convicts me that I need to be more honest and precise when talking to people about how I am. To say “I’m good”, is far from true.

If I said “It is well with my soul”, while accurate, it would sound pious and a bit ambiguous. Not really helpful for me or the caller.

So What Can I Say On The Phone?

When I’m talking to someone face to face it’s pretty obvious that I’m in pain. My eyes give it away. I’m constantly wriggling to try to get comfortable. My crutches are my constant companions and when I do walk I am clearly crippled.

The phone is so different though. Those visual signs just aren’t there.

So, I’ve decided the best approach for me, when asked how I am on the phone, is to simply say;

” I’m good….my body , not so much”

It’s honest, precise and if I need to expand then it opens an opportunity to do that.

Chronic Illness is difficult enough without us making it more complicated.

Keeping our responses to simple questions, short, sweet and honest, not only helps us manage our diseases better, it ultimately helps those who live and work with us and who care for us.

It helps others better understand our needs and situation.

So today if you ask me how I am, I can pretty much guarantee my response will be;

” I’m good….my body, not so much”

Take care

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.

This post was shared at the Salt and Light Linkup Group

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

Lucy At Home

A “Good News” post ~ Happy Easter!!

~ Sam ~ 4 Comments

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

God Cares, Even About The Little Things

~ Sam ~ 10 Comments

We often think of God’s plans for our life in terms of grandiose ideas. God also cares about the little things in our life just as much as the big-ticket items.

When I medically retired 4 years ago, there were many things I could do then that I can’t do now.

I retired early due to Rheumatoid Arthritis and a non-functioning bowel, which resulted in a permanent colostomy. At that stage I had no idea I had a rare bone disease simmering away, ready to launch an almighty attack.

My Story was going to become quite complex over the space of a very short time.

I’m actually glad I didn’t know. Sometimes I think it’s best just to live in the moment with a dash of blissful ignorance about the future.

Thankfully God does know our future and my experience is that He always has a plan available for us at just the right moment. We need to be watching, waiting and listening for it and prepared to act on it.

Do Not Worry

“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life?

Matthew 6 v 25 -34 (New International Version)

Whether sick or healthy, none of us know what the future holds on a day to day basis. While planning is a good discipline to have, learning to appreciate life’s precious moments each and every day, is possibly even more important.

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Appreciating The Little Things

So let’s get back to what I could do when I first medically retired. I could:

  • Still, drive a car
  • Walk through a shopping center with a walking stick in one hand and my husband by my side
  • Go to cafes and restaurants and sit relatively comfortably for an hour
  • Attend church services at least fortnightly
  • Cook a meal or bake some goodies.
  • Potter in the garden
  • Go to a hairdresser salon and get my hair washed, cut and blow dried. Colouring was too much as it meant being there for over an hour.
  • We could go for short holidays not too far from home.

Basically, they were all the little things in life that can so often be taken for granted….until they are gone.

Adjusting to Losing Some of Life’s Little Things

Fast forward to today. These are the things I can no longer do:

  • Drive. Even being a passenger in a car causes excessive pain. We just make it to my hospital visits which are a 35 to 40 min car trip.
  • Walking is difficult. I can walk outside of the home using 2 crutches but can’t walk further than 100 meters without severe pain. I need a mobility scooter for longer outings but I don’t have the energy for these because of constant broken bones that don’t heal and severe bone pain. The scooter also aggravates the pain.
  • Leisurely cafe visits are no longer possible. I can’t sit for more than 20 mins because of the pressure seats place on my broken legs. I use cushions but they only allow me to get through the 20 mins. Without a cushion, I couldn’t do it at all.
  • I can’t go to church for all of the above reasons.
  •  A Hairdresser salon visit or a trip to a supermarket to quickly pick up a few things is out of the question.
  • We can’t go away on holiday.
  • Cooking meals or being in the kitchen for longer than the time it takes to make a cuppa, or get a small snack, isn’t possible.

So, I’ve had to adapt. It’s amazing how we can adapt and find ways to do things differently when we have to.

Finding Ways to Adapt

If life takes a turn in direction, as it does with chronic illness, it’s so important to keep doing the things that make us happy, that keep us contributing to life and gives us a sense of accomplishment.

I’ve found ways to clean my home. I navigate my house holding onto furniture and I can dust. My crutch is an amazing mop. If I throw a wet flannel on the floor and place my crutch on it, I can walk around slowly, crutch in hand, washing the tiles.

I can do all our grocery, clothes and household goods shopping online. I love doing it like that and I’m not sure I’d change back if I could.

We have turned our outside patio area into our own little French Provincial cafe. When I’m not well enough to go out for coffee and cake, we simply have it in the midst of our beautiful pot plants.

My husband and I have church at home. We watch Songs of Praise and listen to a recording of the morning sermon from a wonderful preacher. We sing hymns and Christian songs. Our souls are fed.

Thankfully my husband is an amazing cook (one of God’s wonderful provisions given well in advance of my need).

We holiday at home. When I first medically retired, we felt God leading us to a lovely Bayside village. We thought it was because it would be good for our health to go on long walks and have fresh air. As it turns out it means my husband can drive me 4 minutes, down the road from our home, to look out over the Bay to the Islands beyond. Magnificent views, fresh air and it’s so uplifting. The added bonus is there is a cafe with disability access. On good days we can sit there for 20 mins enjoying a coffee and cake. That’s what we’d do on holidays anyway. This way I get to come home to my own bed and avoid all the packing required for a holiday. Perfect!

God Cares Even About The Little Things

But even the very hairs of your head are all numbered. Fear not therefore: ye are of more value than many sparrows.

Luke 12 v 7 (King James Version)

So that brings me to my hairdressing needs and I must admit I’m a bit excited.

I’ve had 2 beautiful mobile hairdressers over the past 2 years. The first one decided to take a permanent salon job after 6 visits. She was lovely so I was disappointed but I quickly managed to find another one in our area.

She was wonderful and worked quickly which was perfect for my situation. At the second visit, she told me now she was pregnant but would be working through until a month before her baby was born. That would give me time to try to find someone else. Or so I thought. There were, however, no more mobile hairdressers in my area. Know God Cares About All Things

On her last visit, I told her to cut my hair very short. I thought that way I could at least park the problem for a while. We had discussed that she might return to work in 6 months so I was happy to wait and see how things worked out.

She has since had a beautiful baby boy and let me know this week that she won’t be doing mobile hairdressing again. Completely understandable.

So, I am left with hair that hasn’t been cut for 6 months and while it’s healthy enough, it’s at that awkward stage where I can’t manage it. Not ideal when I already have disabilities that make grooming a challenge.

I spent hours searching the Internet in the hope that a new mobile hairdresser had opened a business. There was no one else in my area offering this service so I was really at a loss as to what to do.

My husband even went to a local “Just Cuts” salon to try them out for speed, comfort and wait times. They were good and quick but there was no guarantee I wouldn’t be kept waiting when we arrived, so we had to rule that out.

I was almost ready to give up when I quietly prayed, “Lord, I don’t know what to do. I need your help”.

Within minutes of that short, heartfelt prayer, I had the thought “why not contact my original mobile hairdresser? Maybe she’s left the salon that head-hunted her and is doing mobile work again.”

I found her old website which was encouraging. So, on the wings of a prayer, I sent her an email.

Well, bless her, she rang me within an hour to say she’s not doing mobile work but a good hairdressing friend of her’s has just moved from New Zealand to Australia. Amazingly she lives around the corner from my house.

Even more amazing, she is just starting up a mobile hairdressing business and looking for clients!!

My old hairdresser was as excited as I was. She explained to me that she never looks at the old email address that I had contacted her on but for some reason she just decided to. She saw my name and remembered me straight away so clicked on my email.

God was definitely caring about the hairs on my head that day.

She texted her friend asking her to look after me. Her friend messaged me later that day to set up an appointment for the following week.

Don’t you just love it when hope is restored in what looked like a hopeless situation?

God cares, even about the little things.

Sam xx

This article was written for  Blogs by Christian Women. It is an honour to be a regular contributor.

This post was shared at the Salt and Light Linkup Group

 

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

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.

 

Where is the rule book?

~ Sam ~ 8 Comments

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

 

 

 

The Tides of Chronic Illness

~ Sam ~ 19 Comments

I was sitting at our local cafe this week, which is situated on a Point overlooking the Bay and beautiful Islands beyond. It really couldn’t be more idyllic and I am blessed to live so close to such a gorgeous place on Australia’s east coast.

As my husband and I were sipping our cool drinks and soaking up the gentle sea breeze, on what was a mild summer’s day, I was fascinated at how quickly the afternoon tide was beginning to roll in.

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Only moments before the water was still and there was no sign of change. All of a sudden ripples could be seen and the mud flats began to disappear before my eyes.

I rarely get out due to my health but this is one special place that I can manage on a good day and it’s perfect to sit back, relax and contemplate life. My thoughts turned to how quickly the tide changes in our lives when living with chronic illness.

One minute everything can be calm and stable and the next we are inundated with symptoms flaring, numerous medical appointments, x-rays and scans, blood tests, poking and prodding, emergency trips to hospital, feelings of bewilderment and concern. The tidal waves keep loudly crashing around us until the crisis is over and the seas are calmed.

I have one goal this year. Stay on calm waters! I’ve had too many years of tidal waves crashing over me with my health. I know most of that wasn’t within my control but I have learned some lessons that I’m hoping will keep me out of the firing line of sudden tidal changes.

As I looked to the right of where we were sitting at the cafe, there was a green tree standing tall and safe as the tide began to creep around it.

My aim is to be like that tree this year. Standing above the creeping symptoms of my disease and not allowing them to swamp me and drag me under.

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So while I know some health events will definitely be out of my control, my plan to simplify my life and avoid anything unnecessary includes:

Reduce Medical Appointments 

I have 6 Specialists on my medical team plus a GP.  I have been seeing 5 of them every 3 months. With the agreement of my Drs, less appointments means less running around and more time to enjoy “non-medical” activities. This year we are reducing to 6 monthly appointments for each Specialist. We have spread these throughout the year so I am not overloaded at any one time. If I do need to speak to them in between they are happy for me to email, phone or make an extra appointment.

Reduce Regular Tests

I need regular blood tests to monitor a number of my autoimmune diseases as well as regular xrays, bone scans and bone density tests to monitor my rare bone disease. In consultation with my Specialists we have reduced my blood tests to bi-monthly and my x-rays/scans to every 6 months.

I’m feeling a sense of relief just writing this!

Avoid Surgery Unless an Emergency 

I’ve had 7 surgeries on my legs over 3 years. I’m exhausted. In the last two I aspirated while under general anaesthetic. My Surgeon and I have agreed “no more surgery” unless a life threatening emergency.

Know Your Disease 

This is probably the biggest key to simplifying my life with chronic illness. I’ve been diagnosed with Rheumatoid Arthritis and Sjogrens Syndrome for 8 years now and it is pretty much under control. It flares but I know that we can’t change my medication because of the risks that has for my bone disease.

We have reviewed every possibility in terms of appropriate medication and we’ve brought in other Rheumatologists for consultation. We have exhausted our options.

I just have to manage my autoimmune disease flares conservatively with rest, heat packs and pain meds. It is what it is.

My Bone Disease is my biggest concern. It is completely unmanageable and has a life of its own. I have however discovered what is an emergency (pathological major fracture or pole breaking in my leg) and what is something I just need to live with (constant foot stress fractures, muscle atrophy worsening, muscle bleed).

I’ve also learned with my bone disease, any significant increase in pain or symptoms will usually reduce to manageable levels within 4 days.  If not I need to call my team asap.

Get Out More

With less appointments I won’t have to conserve my energy to be able to get to them. To prepare for an appointment, I can’t go out for the week prior and I need at least another week to recover. With the amount of appointments and surgeries I’ve had over the past 4 years, we have only been able to get to a cafe a handful of times and we have only taken my mobility scooter out twice since I got it 7 months ago.

That has to change and it now can.

I will be able to go out on better days and know that I have time, days or weeks if necessary, to recover from the “non-medical” outing. Such a lovely thought.

When I feel “the tides of chronic illness life” washing over me, as they no doubt will from time to time, I’m going to think about that green, tall tree standing upright as the tide creeps in around it.

I’m going to remember that there are things I can control and have changed.

I might get my feet wet but I won’t get swamped.

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