It’s beginning to look a lot like Christmas!

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For those of you who know me well you will know that I adore Christmas. The past few Christmases have been interesting to say the least with my stoma creation (Rudolph had to feature ūüėä) , my broken leg, bone disease and Rheumatoid Arthritis. This year is not disappointing in the challenging Christmas stakes.

My husband is recovering from difficult surgery on his hand to remove a cancer, my leg is still broken and I have an infected root canal under an old crown which needs attention as soon as possible. We are relying on the support of carers to help us out on a daily basis and even have Meals on Wheels being delivered daily. Not ever what I thought I would need but I am so very grateful for this amazing service.

Yes, It’s beginning to look a lot like Christmas….the kind we’ve had over the past few years anyway. It could be depressing but for me Christmas is full of hope, joy and peace. I love the Christmas story, I love putting up a Christmas tree and singing carols. I love wrapping presents and even writing Christmas cards is a lovely way to sit and remember special friends and family far and wide. In fact in many ways I feel the lead up to Christmas is the most special time of the year.

I am ¬†so looking forward to catching up with family and friends on Christmas Day/Boxing Day this year. My body may fail me but there are always ways to do things differently so that joy can remain and the simple things of Christmas take on extra special meaning when you can’t take things for granted.

Thank you to those of you who have followed my blog during the year. Your encouragement, comments, thoughts and prayers have meant so much.

I’m looking forward to continuing to write about my medical musings in 2016 and sharing my journey with you.

A very happy Christmas to you all.

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Stoic by nature…..just not for a moment!

I was once called “Stoic” by my boss when I was working because of the way I got on with my chronic health issues without fuss & was always cheerful, smiling & putting others first. I kept working full time with that stoic attitude & nature until my body physically would no longer let me. Even with a permanent colostomy, Rheumatoid Arthritis, a rare bone disease that has left me with a broken femur that refuses to heal, I am still stoic & happy & positive….on most days!

It is a rare day that sees me crushed but that’s how I felt this morning. The pain in both my legs was unrelenting & even though I have a high pain threshold I just, for a moment, felt a wave of despair flow over me. It wasn’t self pity, it wasn’t even regret, it was despair that arises from chronic debilitating unrelenting ¬†pain. On top of that my stoma was in overdrive & I needed to find the strength & even courage to get on my legs, get to the bathroom & shower, deal with the stoma & get dressed for the day. Sounds simple in words but the reality of doing it was anything but simple. It was overwhelming.

I sat on the bed & allowed the tears to flow. Did it help? A little yes. It allowed me to take a deep breathe & pray for the strength I needed to get up & get going. It allowed me to become stoic again as I realised I didn’t want my disabilities to dictate to me. I wanted to celebrate that even though the activity of showering, dealing with my stoma, getting dressed & doing my hair & makeup would take over an hour, I could do it. I did have the ability, just not like I used to & not like many healthy people would have but all the same I could be thankful that I could get up, grab my crutches & walk. I could focus on what I could do.

There will be many people today with chronic diseases like Rheumatoid Arthritis, Lupus, Multiple Sclerosis, bone diseases etc, ¬†waking our streets, sitting in work meetings, caring for their children, looking like they have everything under control. Their pain will be invisible to most. The reality is they too would have struggled this morning wondering how they were going to get through the day or even how they were going to make it to the shower like I was. They are stoic & courageous but they probably don’t think they are. They will be trying to fit in to the norm when their own normal is so different to most healthy people.

For those of us battling chronic disease, knowing that we are not alone in that battle is so important. Speaking to others who understand what it is like to wake up day after day with the same pain & the same physical struggle is crucial to keeping strong. I’m so thankful that I have been blessed to administer online support forums & know that I don’t journey alone. ¬†Others living with chronic disease have stories that are all unique & their strength of spirit is inspiring & uplifting.

I am not the only one who is stoic!

I have a Cricket Ball on my face….according to my husband!! Thankyou Oral & Maxillofacial Surgeon

Dentist

Yesterday was my visit to the Oral and Maxillofacial Surgeon for debridement surgery. Back a few posts and you’ll remember that a tooth extract last year turned into a complicated surgery as my tooth had fused to the jaw bone and it was all infected with an abscess. 8 months on and fragments of bone were¬†still stuck in my gum and some bone was healing and some was not, partly because not all of the infection had been eradicated. So that brought me to yesterday and more surgery!

The Surgeon had to shave off ragged bone and re-model ( all under local anaesthetic in his rooms mind you). The result is that today I have swelling the size and colour¬†of a cricket ball on the right side of my face¬†with about 10 stitches in my gum. Thankfully I’m not in that much pain due to the nerve drug Lyrica that I take for Trigeminal Neuralgia and Rheumatoid Arthritis. I am exhausted though and that was not just because of my surgery….my friend Rudolph (my stoma) decided¬†to¬†act up yesterday ( must be an attention issue) ūüôā

So¬†my husband and I¬†were about to¬†head for the¬†hospital yesterday morning¬†when Rudolph started having a party. It was not a¬†fun party more like a nightmare situation. ¬†We managed to get to the hospital after the 30 minute drive only for him to decide it was party time again.¬†We were already running late which is not something I ever¬†do (my friends will confirm that) so I was frantically trying to find the Dr’s phone number to explain. How do you explain all of this is¬†in a hurry???

It went like this:

” Hello, It’s Sam here, I am so so sorry to be running late, I am sitting in¬†the car park with an overactive stoma and I have to get to the disabled toilet before I can come in for my surgery, oh and I can’t hurry because I have a broken leg and am on two crutches”

The Dr’s secretary was so wonderful. She simply said” Sam, that is completely fine. Take your time and come to the office when you are able”

Ahhh..I began to breathe again!

The whole situation was so ludicrous but I suddenly felt a sense of calm because none of this was in my control and there was just no point worrying or panicking anymore.¬†It’s happened, it’s going to happen again and it was just one of those days. There will be many more like that but there are also many good days and they definitely outweigh the bad¬† and actually the bad days are soon forgotten….I’m not sure how long it will take for this cricket ball on my face to be forgotten though!

Just one of those days!!

Drilling

This is not health related at all but it’s doing my head in, so maybe a little health related!. ¬† My husband and I live in small complex of 4 town homes. Yesterday it was discovered that there was a leaking pipe coming somewhere from the mains in the common property area. Our neighbour noticed water running rapidly through the storm water drain in the complex and alerted us to it. Being medically retired and at home¬†we get the lovely job of organising plumbers¬†and being on site etc…¬†which¬†we are¬†more than happy to do. Anyway today the plumbers are here with the concreters jack hammering our shared driveway to try and find where the leak is coming from. What a noise! What a mess!! Mud and water and road base everywhere! We’ve all had to park out on the street otherwise we’d be trapped in. The water keeps being turned off and on and they are still no closer to finding where in the pipes the leak is coming from.

We went out this morning for a lovely coffee overlooking¬†the looking the Bay¬†and providing us with a break from the noise but¬†with Rheumatoid Arthritis, plus a broken leg and a colostomy¬†I just¬†can’t sustain being out all day.

Ahhhh wait.. the machine has stopped for a moment!! Looking out my window there are 3 plumbers all staring down a large hole in the concrete scratching their heads….concerning? Yes but at least some peace and quiet… yeah! I’ll enjoy it while it lasts ūüôā

Dickens meets Rosie ~ A special moment

Special

A dear friend of mine has a stoma called Rosie. Rosie has been giving her a hard time of late and she has been in and out of hospital as a result. Life has been tough but she is an amazing lady who keeps bouncing back and brings much joy to others ( more than she perhaps realises!)

I was talking to this lovely friend this week on the phone and she told me a beautiful story that had happened that afternoon which I just can’t get out of my head and I need to share. She was in a clothing area of a department store and was looking at a top which was perfect for covering up Rosie on bad days. At the same time a lady in her 70’s, who was obviously feeling quite frail and had her daughter with her for support, was looking at the same top as my friend. She said to her daughter ” This top would be perfect for covering Dickens”

My friends thought was what on earth would Dickens be, other than a stoma!!Spontaneously my friend turned to the lady and said ” I need that top in that size to cover Rosie!”. They looked at each other and there was a silent understanding immediately that both were talking about their stomas. The lady was recovering from bowel cancer and had only had “Dickens” for 3 months and was finding the adjustment difficult. My friend was able to give the encouragement needed at just that moment and she in turn was encouraged by being able to help someone else in a similar predicament.

Right there in the middle of a shop, two complete strangers meeting over one top, both feeling fragile and burdened by the uncertainty of their health and in particular the management of their stomas! How special, how amazing, how beautiful! A blessed meeting…I just love it when things like that happen.

Disabled Decor ~ A nice house is still possible with a bit of creative thinking!

One of the things I have always loved is Interior Decorating. After working crazy hours, when I was able to work, I would like nothing better than to spend the weekend at home creating new looks around the house with soft furnishings. My favourite style is French Provencal with a bit of the Hamptons style thrown in. Some would call my d√©cor “Vintage” others “Traditional” but whatever title is given, I love to create a space where I am surrounded by things that make me smile. No matter how large or small your house is, whether you own it or are renting, I believe if you make it a space that reflects the things you love, it will always feel like home.

Two main events have happened in my life that have caused me to have to do a bit of re-designing to adapt to my disabilities. One was the creation of my colostomy. Having a colostomy means having lots and lots of colostomy supplies. That means storage is required. One thing I didn’t want was a bathroom that looked like I had a colostomy or that was in a nursing¬†home. I wanted to still be able to retain as much… I guess the word is dignity, within my home. I wanted to be able to store my supplies somehow that would make me feel organised, as that was really important in terms of managing my stoma but also I wanted to enjoy going to my stoma cupboard. So that meant only one thing…. going shopping ūüôā My husband was fully supportive on this particular shopping trip. I found a beautiful French style cabinet which sits in our bedroom and matches the rest of our furniture and its next to the ensuite so works perfectly. No one would ever know what that little cabinet holds but I love it and that was what was important. I enjoy going to that cabinet to collect my supplies to change my stoma. It’s all part of maintaining my sense of wellbeing and it really works!

It’s affectionately called “Rudolph’s cupboard of course!

Rudolphs cupboard-open Rudolph's cupboard

The other event that turned my life upside down was the pathological left femur break, not to mention the diagnosis following of a rare bone disease that leaves me clueless as to whether another bone will break spontaneously. This health event has been particularly challenging in terms of interior décor.

I needed to think about the best way to rest my leg as it heals ( remembering it will take at least 18 months).¬† We needed a stool that didn’t raise my leg too high or have it hanging too low. We worked out, after using a couple of cushions, that around 15 cms high was the perfect size to provide support and limit pain when sitting ( in my favourite Hamptons’ style wing chair of course). I had previously bought some lovely cushions online from a site called “Classic Tapestries” so I thought I’d have a look to see if they had anything like I was looking for. They had the perfect thing and within a couple of weeks, thanks to the wonderful Rebecca who owns the business,¬†my leg was in heaven.¬† My clever husband then decided to make one for me for my study, which means I can sit at my desk and blog with my leg happily supported. I love them both but probably like his just a little bit more as it was made with love!!

The footstool

Husband's version...made with love
Husband’s version…made with love

 

I also needed to think about standing in the kitchen and finding something incredibly comfortable to stand on, rather than tiles that cause my legs to ache and swell. The kitchen floor was something I wanted to do well and in keeping with my style. We found a lovely indoor/outdoor mat which matched my décor and my husband had the idea of putting a yoga mat underneath it. We actually ended up getting a double bed thin camping mattress made of PVA foam and it fits perfectly under the rug.

Kitchen rug decor The kitchen rug

It feels amazing, looks amazing and I am now able to get back to cooking some meals, which helps make me feel normal on good days. All so important when living with a disability.

Rudolph and Rosie

Having a stoma requires a change of life and a change of mindset.¬†Accepting that you now have to manage a normal bodily function a little differently is half the battle. For many people that can be an extremely difficult leap as they may have received their stoma in an emergency situation due to severe diverticulitis or a bowel perforation, or as part of a surgical procedure to remove a cancerous section of their bowel. In that case being given the news that you have cancer alone is difficult but add in a stoma a few weeks later and it’s a tough road for the strongest of people. In the case of emergency surgery, to wake up with a stoma, not even having any idea that was going to happen, can be a devastating situation for the new ostomate and their family.

I feel blessed that I  knew 2 years before my stoma was created that I would probably need one. That gave my husband and I so much time to research exactly what having a stoma meant, plus the situation with my bowel prolapses and the failure of 2 surgeries to try and mend it all, led me to a place where I was more than happy to head into my colostomy surgery.

Friends and family support is incredibly important but finding others who are of a similar age and adapting to a new life with a stoma is paramount to moving forward. That’s where online support groups in particular are the key. Stomas are created for babies, young people, middle aged and the elderly and each generation has a different set of needs and challenges in adapting to this new way of life. The extra icing on the cake that can come from¬†online support, is when true friendships are made through these groups. I now have an Ostomate friend who, believe it or not, had the same Surgeon as me and had her surgery 2 weeks prior to me at the same hospital and we met through a national online blog support group. We would have passed each other in the hospital corridors and had no idea only a few months later we would become such great friends. We no longer blog, we email, we text and we talk on the phone. We are there for each other and can talk about the most intimate details of our lives living as Ostomates.

One of things that new Ostomates are encouraged to do is give their stoma a name. That might sound a little odd to most people and I would have been of that thinking years ago but it makes a lot of sense. My stoma is called Rudolph ( red nose and it was created near Christmas and my husband and I have a warped sense of humour!!) My friends stoma is called Rosie for obvious reasons…obvious to us anyway ūüôā

So why give it a name? For me it makes it easier when I am in public in shopping centres etc¬†and need to let my husband know I have a problem, I can simply say “I need to attend to Rudolph”. We can then swing into action and find the nearest disabled toilet.

It also personalises things…it is a very personal thing after all and for my friend and I we have often had a good laugh over the antics of Rudolph and Rosie….we have contemplated many times creating a Rudolph and Rosie blog but for now those stories are probably best kept somewhat private!

Not so long ago a dear friend of mine found she too needed to have a stoma. She has called hers Ruby and we too have laughed and cried together as she has adjusted to this new way of life.

So the adventures of Rudolph and Rosie will continue and I’m sure some of their antics will make it to pages of this blog over time!