Happy 5th Stomaversary to Rudolph and Me!

I can’t believe on the 11th November my beloved stoma, affectionately called Rudolph, is turning 5!

For those of you without a stoma it may seem a strange thing to celebrate. While it was life changing, it was also life saving and I will be forever grateful for the day of my stoma surgery.

Something About November

There must be something about November and surgery for me. I’m about to undergo lumbar spinal surgery in less than 48 hours. It’s funny how your mind begins to think about the logistics of moving post surgery…..or maybe that’s just me. I’ve been contemplating how I’ll have a catheter when I wake up and how relieved I am that I won’t have to think about using a pan or getting up before I’m able.

I then realised another reason for being grateful for Rudolph. No bed pans for that end either. Just the convenience of my stoma bag. All areas covered. See, there really are bonuses to every situation if you look for them.

Rudolph and Rosie

One of the things I am definitely celebrating as my 5 year Stomaversary comes around, is the friendships I’ve made in the Ostomate community.

My closed Facebook support forum, Medical Musings with Friends has quite a few members who also have stomas. We share a special bond, a knowing understanding.

Not deliberately, three of my Administration team have stomas, all of us for varying reasons…..Crohns Disease, Ulcerative Colitis and a Non-functioning bowel. Their friendship means so much to me.

There is one friendship that has always been extra special. We shared the same Surgeon and without knowing it at the time our stomas were created only a few days apart.

Our paths crossed through an online stoma forum quite by chance. Our stories were so similar and we clicked instantly. Our friendship blossomed via texts, phone calls and we eventually had the opportunity to meet in person. What a special day that was!

Over the past 5 years we have journeyed through so many highs and lows of life and all as a result of meeting because we had a stoma. We have also laughed,sometimes cried, over the antics of Rudolph and Rosie.

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Blessed With Time To Decide

I was blessed to be able to have time to make the decision to have a stoma. While I didn’t have a choice, my Colorectal Surgeon very gently led me through a process, where I could of my own free will say to him “I’m ready, let’s do this”.

Not everyone gets that opportunity. While I’m celebrating a positive health life choice, I also am thinking of those who are still struggling to come to terms with such a radical change to their lives.

Many receive a stoma through emergency surgery due to bowel perforations, a cancer diagnosis and other health scenarios requiring urgent intervention. My heart goes out to those in that situation.

My husband and I usually do something special to mark my Stomaversary. This year I’ll be in hospital recovering from spinal surgery, so celebrating will not be at the forefront of my mind.

I believe it’s good to take the opportunity to reflect on life changes. It’s important to me to take a moment, to remember what life was like before my stoma and why having it has been such a positive experience.

If you’re interested in “why” Rudolph is a permanent fixture in my life, you can read the full journey in My Stoma Story, A Happy Ending

Happy 5th Birthday Rudolph and thank you for making my life so much better!

Sam xx

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

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

I also write @ Blogs by Christian Women

 

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A Cheerful Approach To A Chronic Situation

 

A cheerful look brings joy to the heart, and good news health to the bones. Proverbs 15:30

It’s a gorgeous morning. The sun is shining, the birds are singing.

I can hear children playing in the local schoolyard and a cool gentle breeze is blowing through my bedroom window.

I’m resting on my bed in the hope that my broken bones will soon cease screaming at me. Pain meds will take the edge off eventually and I’ll be able to stand long enough to sort out my stoma and get dressed for the day.

Sometimes You Just Have To Laugh

I’m not going anywhere today. I am pretty much housebound every day. Despite that I still like to dress as if I have something special to do.

Smart casual is my style…or it is now. It used to be corporate suits with high-heeled shoes. I miss that but I quite like my new wardrobe.

Everything has elasticated waists for comfort and ease of wear, plus that works better sitting over my stoma. I like slightly fitted, tunic style tops over 3/4 length bengaline pants. Both have to easily pull on and off and be made of slightly stretchy material to allow me to move freely.

The pants hug my legs a little, as this provides my broken bones extra support when I stand. A bit like bandages. So there is a slight method to my madness of getting dressed like this each day.

I’ve learned the hard way when it’s come to reinventing my wardrobe. My husband and I have been known to cut me out of tops that haven’t stretched, as I couldn’t pull my arms in the right direction to get out of them.

Sad….but oh so funny. On those occasions, through tears of laughter, I’ve managed to give my husband clear cutting directions while I’ve been stuck in the top. A great trust exercise!! Thankfully no one has been harmed during such a procedure. His handiwork has been so good, after each “surgical removal”, I’ve been able to turn the top into a jacket. Bonus!

You really do just have to sit back and laugh sometimes at such a ludicrous  situation.

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Letting A Cheerful Heart Emerge

Today and everyday I’m enjoying what I can do, rather than thinking about the things I can’t do.

It’s not easy.

A concerted effort over time was needed to change my mindset but it was well worth the effort. It’s always worth the effort.

That moment when the focus shifts to the possible, rather than looking at the impossible, is a life changing moment. It’s the moment a cheerful heart has room to emerge.

Don’t get me wrong, dreaming of the impossible, holding onto hopes and dreams, believing they can happen, is also important at times.

But when the very basics of life are verging on the impossible every day, a dose of reality and being grateful for what you can do, is so important.

A Chronic Situation

I’ve had a really tough few months with some bad news on the health front.

Among other things I’ve recently been diagnosed with Gastroparesis. I’ve also recently been reminded by my medical team, my rare bone disease is progressing and there is no treatment and no cure.

I’ve been reminded no further surgery can even be considered as I am such a high risk for permanent complications or worse.

I’ve been reminded by my Orthopaedic Specialist, my bone graft in 2016 just dissolved in a month as if it never happened. We are dealing with a rare complex disease that has a mind of it’s own. It’s not following any rules of medical logic.

My left femur is still well and truly broken nearly 4 years on from the initial break. It’s now classified as a permanent break. With the progression of my disease, my body is affected from head to toe with various ongoing fractures and muscular atrophy.

I can’t sleep or sit comfortably. Getting in and out of chairs or the car or any movement at all really, causes excruciating pain resulting in debilitating fatigue.

Pain medication only takes the edge off at best. I could increase the medication but it would completely reduce my ability to write, think and support others through my online forum. I would end up both physically and mentally disabled and that’s just not worth it.

It’s a chronic situation and one that requires me to make difficult choices to ensure I am living the best life possible.

The Best Medicine

I’ve needed some encouragement over the past few weeks. It’s can be a bit hard to come by when feeling so overwhelmed with pain and disease.

When the punches keep coming an encouraging word means so much, especially when you are really limited in what you can do.

Encouragement can come from friends and family, even strangers, or from something you’ve read.

A cheerful look brings joy to the heart, and good news health to the bones. Proverbs 15:30

This little proverb was on my calendar and it reminded me how much a cheerful heart really is the best medicine.

It encouraged me and confirmed I am on the right track when I focus on helping others, encouraging others.

I need to keep surrounding myself with things that encourage me and make me happy, so that I’m able to bring ongoing cheer to others.

It’s good medicine to do that. According to the Proverb, it even brings good health to the bones to give a cheerful look!!

So why are my bones so bad you may ask, especially those of you who know me well and know I give cheerful looks constantly?

Well, I don’t think it’s supposed to be literal. It means to give a cheerful look or to be cheerful, gives you a sense of well-being. When battling a chronic disease or dealing with any difficult chapter in your life, that sense of well being is exactly what is needed to help sustain you.

That being said, I did smile and felt very encouraged that the Proverb says “good news brings health to the bones”. A sense of hope flooded my soul and that’s a good thing. We all need hope and as a Christian, I believe and know that my seemingly hopeless situation is well and truly in God’s hands.

If God wants to send me “good news that will bring health to my bones”, then I believe that is absolutely possible.

In fact I do receive the gift of “good health” every day. Each encouraging interaction I have with others or each time I provide encouragement, I have a greater sense of well-being.

Without the good news of a cure or treatment, I am resolved to remain working on having a cheerful heart. It does make a difference to my overall well-being.

Giving cheerful looks and encouraging words to others, truly is good medicine.

Take care

Sam x

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 Hospital Stay To Remember

For 8 days in November 2017 I lay in a hospital bed basically writhing in pain.

Rewind to the beginning of that 8 day period and I was being rushed to hospital in an ambulance as my left leg, the one with the non union femur fracture, was like a wooden block and it would not lift off the ground. It wasn’t numb, it was excruciatingly painful.

A quick phone call to my Orthopaedic Surgeon and my 8 day hospital journey began.

After a few hours in ER I was admitted to a ward. My hospital is a Private Hospital and I always get a private room. They were undergoing major renovations this visit, so some rooms were closed off. Generally there are only 2 or 3 shared rooms per ward. I was desperate to get to my room so I could deal with my stoma in private and finally get some peace and quiet after the craziness of the ER.

A lovely nurse popped her head into my ER bay where my husband and I were waiting. Actually it was a bed in a stationery cupboard due to lack of space and that auspicious start really defined how this entire hospital stay was going to play out.

So back to the nurse. She very sheepishly said, ” I’m so sorry Sam, we have no private rooms tonight, we have to put you in a shared ward”. My heart sank but I told myself, as positively as I could, that I’d survive and it was only for one night. They had promised me a private room the next day, how bad could it be?

Not Quite The Room With A View

We arrived at the ward only to find it was filled with high care geriatric patients. They were at risk of wandering and needed a nurse in the room 24/7. I took some comfort from the fact that at least a nurse was there. The logistics of a shared bathroom in this environment, when I was on two crutches and needed access to my stoma supplies, was a little too much to bear I must admit. I felt like wandering too at high speed out of there!!

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I was in so much pain that the first night was a bit of a blur. The next morning I had a team of Specialists all working on my case. My Orthopaedic Surgeon, my Endocrinologist, my Colorectal Surgeon, my Pain Management Specialist, my Clinical Immunologist and a Rheumatologist was brought in for good measure.

Each one wanted to poke and prod me, take blood, test out my leg movement and the worst part of all was that each one wanted a different kind of CT Scan, xray, ultrasound and MRI.

Finally Some Good News…But Not For Long!

Thankfully the following morning the nurses gave me some good news. I was top priority for a private room given the complexity of my health. I was so relieved and by mid afternoon my husband was settling me into my new “tenporary” home. We thought now at least I would feel settled for the rest of my stay.

Hmm…we were wrong. Three days later a nurse popped into my room with a slightly nervous smile on her face. “Sam, I’m really sorry but due to renovations this entire ward is closing down tomorrow and we have to relocate everyone by 10am Monday to a different ward, on the other side of the hospital”.

My heart sank again. I was exhausted. I had not slept since arriving in hospital.  I’d been transported backwards and forwards to the xray department numerous times. Each transportation increased the pain due to the impact on my bones. I was also told that the relocation was only for one night and we would have to move back the next day. Oh my goodness!!

I was so numb from the news I forgot to ask if I would still get a private room in the new ward. I didn’t have any energy left to care really. Drugs and tests and examinations were all taking their toll. I had come to the end of my resources.

Thankfully the move to the new ward went smoothly and I was one of the first patients transferred with a personal Nurse. I was so relieved to be wheeled into a large private room with a big picture window, looking onto a couryard filled with greenery. It was tucked down a little corridor and so peaceful. I had left this entire relocation in God’s hands and I had been so looked after.

Chaos Prevails

There were a few issues which kept the chaotic theme running. The bathroom had a power point hanging off the wall and the TV would turn on but wouldn’t turn off.  The air conditioning vent had a plastic bag hanging off it to stem the cold breeze. It was an old ward!

A lovely maintenance man was called and he couldn’t do enough for me. Within 10 minutes he had everything fixed and I could finally breathe a sigh of relief and relax a little. At the back of my mind though was the thought of having to do the move all over again the next day.

I ended up with 6 scans/x-rays etc in total and each one caused severe pain to shoot through my bones.

Medication Madness

On top of that the Pain Management Specialist, who was so keen to reduce my pain, started me on large amounts of Palexia and a Ketamine infusion.

This site gives an excellent overview about Ketamine Infusions

Now, I really don’t do well on strong pain killers. The only one I can tolerate is Endone and even then I have to divide it into regular 2.5mg doses every 5 hours to avoid being ill. So you can imagine what a star patient I was on 200mg Palexia and a Ketamine infusion. I was so nauseated and dizzy I couldn’t get off the bed. I went from being hyper to unable to control my tears. I felt trapped and overwhelmed which is just not me at all.

I couldn’t sleep with the Ketamine infusion as it was being infused through the right side of my abdomen. It got moved every 12 hours but because my stoma is on the left side of my abdomen we couldn’t rotate sides. That meant I couldn’t lie on my right side to sleep which I need to do to take the pressure off my broken left leg. It was just a nightmare that had no escape route!!

“You Obviously Just Don’t Do Drugs”

Finally my Pain Management Specialist agreed that I just don’t do drugs. On day 6 of my stay we stopped the Ketamine infusion which thankfully restored the normal taste in my mouth. The Ketamine had caused another very un welcome side effect. Everything tasting like salt, even water. It was disgusting!

I felt like a failure. I’d reacted badly to the medication and even worse none of it had touched my pain.

The scans revealed all kinds of things, none of which could be fixed without surgery and we all agreed I am not up to dealing with major surgery unless an emergency.

Some of the issues just can’t be fixed. My legs have muscular atrophy which has worsened since last scan. I have avascular necrosis in my hips. I have calcification in the muscles in my left leg. My broken leg remains broken. I have damage to my sacroiliac joints with stress fractures. I have disc prolapses throughout my lumbar spine threatening to compress my spinal cord and the list goes on.

My Rheumatoid Arthritis can’t be treated because my medical team believe the Disease Modifying Medication, including biologics, used to treat RA, will adversely affect my bone disease. This was the final decision by two Rheumatologists. That means I’m at high risk for joint deformity and disability but the bone disease will cause even greater damage, so we have to weigh the risks.

The bone disease causes pathological fractures throughout my body. I’m basically being attacked on every angle from a muscoskeletal perspective.

The non functioning leg and escalation of pain is all the result of my bone disease progressing. There remains no treatment and no cure.

True Care

I had some of my Specialists sit with me with tears in their eyes. I found myself comforting them and saying, “It’s ok, at least we’ve tried a few things, it’s good to know why the pain’s increased and I’ll adapt”.

I told my Pain Management Specialist that I’d been approved for a Level 4 care package (highest level of care in Australia). I thought she might say, ” Oh you won’t need that”, instead she quickly responded, “so you should”.  It’s moments like those when the reality of my situation punches me.

I did however receive a bit of a reprieve when an excited nurse, who was accompanying me back from the xray department, told me an email had just been received advising that we would all be staying in the new ward. The other ward would be closed for 3 months.

Yeah!! I could stay in my quiet peaceful room. That night with no Ketamine infusion in my abdomen and with the knowledge of no more moves or tests to endure, I finally slept.

The whole hospital stay was really a dead end. I knew it, my Specialists knew it and none of us really knew what to do about it. Well, that’s not strictly true. I knew the best place for me was home. I wanted to go home.

Can I Please Go Home Now?

Reluctantly, my Specialists agreed that home was the best place. I could rest more easily, manage my pain meds without relying on the nurses schedules, eat food that worked for me and I would continue to be monitored closely as an outpatient.

The Doctors and Nurses were amazing as always. On one really bad night a beautiful nurse brought me a much needed cup of tea at 3am. Gestures and care like this made a nightmare hospital stay just a little more bearable.

Despite my inner turmoil at what was happening to me and around me, I was constantly surprised at the amount of times Nurses came into my room to seek refuge. They said my room was serene and peaceful. That in itself was a miracle as I felt far from serene and peaceful.

All I could do in my darkest hours of pain was cling to God’s promise that “He would never leave me nor forsake me” and ask Him for strength for each day and hope for tomorrow.

“He will never leave you or forsake you. Do not be afraid; Do not be discouraged.” Deuteronomy 31 v 8

After being home for two days, my pain remained and I came down with a viral infection (a parting gift from the hospital). I was finally sleeping at night though in my own bed…pure heaven.

I came home with a clearer picture of where things are at with my bone disease and I now know that my regular pain medication of Endone is the best for me with the dose slightly increased.

At the end of the day, if at all possible, there is just no place like home 💗

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

Please click here to read our Privacy Policy

This post was shared at the Salt and Light Linkup Group

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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”  

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Thank goodness…It wasn’t me!

I don’t often write about the ins and outs of living with a stoma but today I’m making an exception.

The life of an Ostomate is in general a mystery to most people. Let’s face it, you don’t usually think about having a stoma or researching what it might be like to have one, unless that particular path is a possibility or if someone close to you has one.

Ignorance and Lack of Understanding

I certainly didn’t give much thought to what it might be like to have a stoma when I had a functioning bowel. Any thought I might have had, was one of “yuk, I wouldn’t want one”. My reaction was of course based on my own ignorance and lack of understanding.

One of the concerns I had when facing the prospect of life with a stoma was whether it would smell. Whether I would smell. It was my biggest fear. Again it was a fear based on a lack of knowledge.

The Facts

Stoma bags have an inbuilt filter so when an Ostomate passes gas, the smell is filtered and contained. In essence there is no smell, unlike someone without a stoma who accidentally passes gas in public.

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Stoma bags are amazing really. There are all kinds to choose from. I have a colostomy which means my output is pretty normal as I still have most of my large intestine. My stoma is on the left side of my abdomen and is a cute red little button. Who knew our intenstines were a lovely red color and so clean!!

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So, back to my bag. I have a one piece bag that literally just sticks onto my skin around my stoma. So easy to put on and dispose of and change. The stoma bag is the same colour as my skin and is so comfortable I’m at the stage where I often forget I even have a stoma. To get to that point takes a while but I’m just over 4 years post my colostomy surgery.

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A Slightly Funny Story

Today, I was however very aware I had a stoma. I had to go for blood tests, I was not feeling wonderful and my stoma was being quite active. I didn’t have a full bag but it was full enough. I didn’t want to be out for too long so was hoping to be seen very quickly.

My husband and I entered the pathology rooms and I was hit by a smell. “Oh no”, I thought, ” I’ve had a leak!”

Leaks can happen but I quickly put my hand on my abdomen and could tell I hadn’t. You learn the signs and everything felt in place and ok.

My next fear was the bag had a hole or tear in it. That has happened before, only twice but once was enough. I wouldn’t be able to tell until I got home or found a toilet.

My legs were playing up so I didn’t have the strength to try and find a toilet and no one else was in the waiting room apart from the phlebotomist, so we just took a seat.

The smell dissipated and I relaxed a little.

We were soon called into the collection room. As my hubby and I entered with the phlebotomist the smell hit again and flooded the small room. My heart sank. It was the smell of a babies nappy in desperate need of a change. I just wanted to go home or at least have the floor swallow me up.

I looked at my husband trying to speak to him with my eyes to check if he could smell anything. I probably looked like I had a severe tic so not the best idea under the already awkward circumstances.

The smell quickly dissipated again, which was slightly odd as usually if a bag leaks the smell is there until you sort the issue out.

My blood was quickly taken and I thanked the lady, grabbed my crutches and walked as fast as possible out into the street.

Did You Smell That?

I asked my husband immediately did I smell?  He said no but confirmed my fear that he definitely could smell something when we were in the rooms. We got into the car and I checked my bag (thank goodness for tinted windows). My bag was perfect. No smell, no leak!!

We looked at each other & burst out laughing😄

It wasn’t me!!

It was the lady in the rooms. We realised the smell in the collection room was worse when she bent over to get something out of the cupboard.

Hmmm….obviously something she had for lunch.

While I felt slightly bad for laughing, I can’t tell you how relieved I was it wasn’t me.

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Just goes to show that even though I am comfortable with my stoma even I was pointing the finger at me first.

Moral Of The Story

So, moral of the story….if you are in a room with someone who you know has a stoma and you smell something odd, please don’t assume it’s them. In all likelihood their Stoma bag is protecting any smells. In all likelihood it is someone else.

I’m just so glad, on this occasion, it wasn’t me 😊

Click here to read more about  My Stoma Story

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Lifes puzzle

I am excited to introduce my new Guest Blogger, Dave Head. Dave lives with a number of Chronic diseases including, Multiple Sclerosis and he has an Ileostomy. His courage, strength and determination to live life well,in the midst of and despite of his circumstances,is truly inspiring as you will see for yourself as you read his latest post. Don’t stop there though, check out his entire blog ” Life is how you live it”
Enjoy Sam xx

Life is how you live it…

There tends to be a question that often arises once I build a friendship with another person;

“How in the hell do you stay so positive with everything you’ve gone through?”

My typical response will be “I don’t know, I just seem to.”

I have come to realize there is a far deeper explanation than this. Previously I had not put a great deal of thought into the true answer. I simply account it to moving on. As you can imagine, it is not as simple as this. Often during times of difficulty with an illness I do go into a different state of mind as I’m sure all of us do. Our daily routine of life is disrupted, depending on the circumstance this disruption will vary from mild to severe. Either way, what seemed most pressing in our lives suddenly moved down our list of importance.

I have read…

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