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 😊) , 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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Testing Times….medical tests that is!

What a day! I’ve just seen my GP, had blood taken & booked in a Bone Scan for Friday & a Breast Scan for next Friday…I must say I feel exhausted thinking about all the tests.

I saw my Endocrinologist yesterday who is monitoring my Bone Disease and unfortunately my bone turnover has plummeted again which is not good news in terms of not enough new bone forming to heal my broken femur & also not good as it means my bone disease is active. She also wasn’t happy with my Vitamin D levels even though I take supplements. Again just indicative of disease flare.

The Bone Scan on Friday is to see if there are any stress fractures that we don’t know about & that might be getting ready to turn into major fractures. I am praying that is not the case.

The Breast Screen is partly routine & partly because I am having breast pain & swelling & shouldn’t be. I’m sure its just because my whole system is out of whack but best to play it safe. Actually something quite weird happened as we were on the way home. I got my mobile out to ring the Breast Screen number & my phone rang….it was the Breast Screen people calling me as a courtesy to remind me I was due. I just started laughing….how bizarre…. I’m sure the lady on the other end of the phone thought I was mad. I did explain but the moment seemed lost on her. Never mind☺

Anyway we now know why my Broken Femur is not healing. Hopefully my xrays at the end of August for my Surgeon will show slight improvement otherwise I will be facing a bone stimulator being inserted.

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Just to top off the day my immune system is in a mess, my salivary glands are infected & I’m on antibiotics.

The only thing to do after all that is to put the kettle on, make a cuppa & blog 😊

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!

The Femur Break is not behaving at all!

Peter & I spent 3 hours with my Orthopaedic Surgeon yesterday afternoon which included him sending me for an urgent xray. The break is showing some signs of trying to heal which is encouraging, however the excruciating  pain I’ve been experiencing, since the screw removal surgery 3 weeks ago, is because my leg is unstable at the break now that the screw has been removed & on some movements the break is actually twisting. That explains why the pain feels very similar on occasions as it did when the leg actually broke. He knew removing the screw would cause some instability but he didn’t have a choice as it was going to snap. He explained he could have put in a replacement screw straight away but he is worried that will cause my leg to fracture further down.

It really is just so complicated now….not that it was ever straight forward if you think about it.  Hmmm…thinking about it is not wise….I try not to dwell on it for too long at all.

We have agreed to wait another 6 weeks before intervention, with me using 2 crutches at all times & only gentle muscle strengthening exercises. I have to repeat the xrays in 6 weeks & see him again. He said to us that he may then consider inserting an internal bone stimulator to encourage the break to heal quicker. The issue now is that if the break doesn’t heal I’m stuck in this limbo of excruciating pain so he is really keen to try and get it moving. The stimulator stays in for 3 months if he goes down that path. I’m relieved not to need more surgery just yet as he was also considering reinstalling a knee screw. That may yet have to happen.

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So back to 2 crutches & feeling every bit of my 50 years….actually my body really does feel about 90 but again best not to dwell on that either 😊

Surgery Done…tick…Recovery underway…tick

I’m home from my surgery yesterday to have the interlocking screw removed from above my knee. My femur break is not healing and all the weight from my leg was being placed on the screw, causing pain but more worrying for my Surgeon was that he thought it was going to snap. The procedure was under General Anaesthetic but it was day surgery so I got to come home last night & sleep in my own bed. The beautiful looking bandage came off this morning & under it is steri strips with a waterproof dressing, which can come off in 10 days. The pink pre surgery prep wash will take a while to get out. Quite the fashion statement don’t you think 😁  I’m not in too much pain yet as they also put a local Anaesthetic into my knee. That’s starting to wear off so I have some strong pain killers ready & waiting.

The big issue for me now is the healing of this femur. My Surgeon is still saying a long process. It seems the bone disease is delaying healing & there is a possibility of needing debridement surgery in the future to get rid of the dead bone & allow new bone to form properly.

For now though I’m just going to focus on recovering from this round of surgery & getting ready for my 50th birthday in 3 weeks. Beautiful friends are coming to visit which I’m really looking forward to. It will be a low key affair with lunch & treats. Actually the next day I have my post op follow up appointment. Hopefully it will all be good news & I can get back into rehab work again. Now that would be a lovely birthday present 🎉🎂
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The Waiting Game

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2 weeks today until my Surgery and no matter how I occupy my time, how engaged I am in the moment at hand, I just can’t shake of that waiting feeling, just like a clock is ticking constantly. It happens every time. I’m not anxious, I’m quite relaxed, I’m sleeping well but I still feel like I’m waiting for that date to roll around. It’s so annoying!! I even packed my bag yesterday in the hope that by getting that out of the way I could just forget about it and enjoy the next 2 weeks.

It helped…

for the afternoon….

but I woke up this morning and once I came around fully (it takes a while these days), the first thing I announced to my husband was I’d forgotten to pack something 🙂

So why am I writing this post? To help me forget and stop that clock ticking of course.  Will it work? Not likely but it’s another part of my story that belongs amongst my musings.

A Screw issue in my leg….. surgery needed!

I had my 8 month review appointment with my Orthopaedic Surgeon today to see how well, or otherwise,  my broken femur was healing. I’ve been having increasing pain above my knee so my husband & I were expecting a mixed report.

Well we were right in expecting that. When my femur broke 8 months ago the Surgeon inserted a titanium rod with a screw at my hip & a screw above my knee,  which is designed to compress & support as the break in the femur healed. My problem is that the screw above the knee has compressed too quickly & my bone is healing too slowly (called non-union). This means that all my leg weight is at the screw site & one issue is the screw could snap but the main issue is that my femur simply can’t heal if left like that.

So we arrived at my Surgeons office with him standing at his door ready to greet us ( never had that happen before…didn’t know whether to be honoured or scared). He ushered us in & before we could say hello he said, “I’ve got your xrays, the screw has to come out, you have to use crutches at all times leading up to surgery & for quite a while after surgery, your knee will feel loose but we have no choice” 😯

I think he took a breath at that point thank goodness. Thankfully we had a feeling this was going to happen so we were slightly prepared but still had to adjust our thinking a little. Recovery should be ok but because of my Rheumatoid Arthritis medication he explained that impressive bruising will be the main difficulty. I remember so well the bruising I had following the femur repair surgery. It’s the debilitating kind but with time it improves & I can thankfully take whatever time I need.At least I’ve got 3 weeks to get ready for this next round of surgery booked for 22nd June.

The only other piece of news to digest is that healing will be delayed & we are looking at another 12 to 18 months from here. Good job I’ve become great friends with my crutches & am getting around well all things considered.😄