Tuesday, 19 April 2011

'P' is for ... Progress and Positivity

I haven't blogged about my progress for a while so when ‘P’ came up, I thought it would be the ideal word.

For anyone new to my blog, nearly five months ago I went through major surgery - total jaw joint replacements (both sides) caused by arthritis, one of the manifestations of my Behcets disease.
Did this really happen to me?

Was it really the 13th October that we drove to the hospital - me taking deep breaths, in, out, puhhhh, blowing away, like I was in labour - trying to calm myself, and not panic, and hubby kept reaching for my hand, covering it with his and crunching it tight as he tried to reassure me. 'It won’t be long now. Soon be over.'

Nearly seven hours of surgery later, and I came round in ITU and was sick, sick, sick - not good when you have two new jaws. Hubby was beside me. I couldn’t see him but I could hear his deep, booming voice. ‘It’s all done – it took six and a half hours. You look incredible. Well done, darling.’

On the one hand it feels as if it was yesterday. On the other, when I see the photos, it might have been ten years ago. When I did my last blog about progress, I think it dawned on me then that it was going to be a long, long road. And it has been.
I will always remember that first glimpse of myself in the bathroom mirror after surgery. It wasn’t me. It didn't even look like my eyes. Tiny, tiny eyes filled with pain stared back in horror. Mrs Doubtfire was the first person to spring to mind. My face was an enormous pastry, doughy mixture. My neck, more swollen than when I had mumps.

Feeling as delicate as bone china for weeks after the surgery, there were times when progress stopped, ir it was so painfully slow, it was undeterminable. The pain was brutal. Everything hurt above the neck. Parts of my face wouldn't do what I wanted them to do. I developed a new party piece - I could only lift one eyebrow. The other sat like an overstuffed caterpillar about to fall off a cushion over my eye. My brain played silly buggers with my nerves for months. I couldn't stand noise. For weeks, every small step was progress; a shower, washing my hair, brushing my hair, pulling a top down over my head.

Now I am me. No more Mrs Doubtfire. There has been so much progress, although I still wonder if there will ever be a time when my jaws feel as if they are mine, rather than mechanical.

The most significant progress, is I have no TMJ or jaw pain. I stopped taking morphine months ago, and don't take any pain killers for my jaws.

The scars have healed wonderfully. The two on my neck are still pink, deep and painful - they feel sore and sometimes pull, although it helps when I rub in copious amounts of bio oil. And the ones in my head ache but otherwise, the scars around my hairline and ears are barely visible. I can turn my neck and drive without thinking about it. Sometimes it feels a little sensitive if I wear a scarf as it rubs, but nothing much.

There are tender patches on my head that feel as if been scalped – hair might have been yanked from my head - and it still feels tender, almost bruised on parts of my forehead and eye socket.

I still can’t sleep on right side as it hurts to put my head and ear down. And if I turn on my left, I have to lay with my head angled on the pillow so that my ear sits below the edge or between a gap to cushion it.

Most of the feeling has now returned to my face but all around my hairline, the scars are still numb. The tops of my ears have feeling but the lobes could be pierced without any feeling.

My mouth opening is about 2.5 - 3cm, a huge improvement from the 1cm opening pre-op.

My bite isn’t quite right - it's still tricky to bite spaghetti or salad but that's no big deal in the scheme of things.

I can just about brush the backs of my teeth.

I can eat crusty bread. And sweeties.

When I use my jaws there is always the sound of a quiet rustling, like fabric or newspaper if I tune in to it. They squeak if I eat an apple or anything that makes them work hard. But there is no longer a clunk or click when I talk or yawn.

I can sing, laugh, yawn, and talk. Oh, I can talk! By the end of the day when I'm tired my cheeks ache, as if I've been laughing too much. And I'm not sure whether others can spot it but when I'm tired I also develop a slur or lisp and my words don't come out quite so easily. If I get too excited and want to speak too quickly my brain stops me, like I’ve had a stroke and slows me so I sound like I'm drunk. Or imagine a ventriloquists dummy. Sometimes it feels as if someone has their hand stuffed up my back and is making me speak, forcing the words out, yet all the time, my mouth won't co-ordinate with it and my face feels taut and stiff.

However I look normal. I go to the shops, the bus stop, the school playground, and to people who don't know me, there is nothing untoward except a couple of scars on my neck if you look up close. Strangers would have no idea what I've had done.

I learnt the hard way that with this surgery there would be no day on day improvement. It was no good getting frustrated or trying to push progress. My consultant told me it might take six months to get my jaws working to capacity. It's still only five months. When I see him in a couple of weeks for my check up he'll be delighted with my progress. Looking back at the photos, it's clear how amazing it's been. A lot of that has been my mental attitude but staying positive has not always been easy. TMJ replacement surgery is complex and the recovery is a slow process. Patience is not one of my virtues.

We still don’t know the life expectancy of the jaws and being realistic, it's inevitable I shall have to go through the whole thing another once, twice - maybe three times in my life time. But after eighteen months of the most debilitating, all consuming TMJ pain, I am free of any. And for now, I can't tell you how good that feels.

Until another day
Bye for now
xx

33 comments:

Deborah Lawrenson said...

Very brave, both to endure and to write about. It seems inconsequential to say, given the circumstances, but this is a very good piece of writing too.

Jenny Beattie said...

Wow; I'm stunned every time I read your updates. Maybe you didn't feel you had any choice about the procedure but I so admire your bravery, tenacity, strength. So inspiring.

Bish Denham said...

I had no idea TMJ could be so serious that jaw replacement would be necessary. And I didn't know that jaws could be replaced! What a trooper. The pain must have been really terribly for you to go through the surgery.

Jane Lovering said...

Sounds and looks horrible, but I'm glad the outcome was what you wanted. My daughter had jaw-realignment surgery last year - not pretty, but the results were fabulous! Congratulations for your bravery in talking about this (and posting the pics!)

toady said...

You're looking great!!
Well done.

Rosemary Gemmell said...

Thanks for writing so honestly about your endurance and progress - I didn't know about it and I can only admire your bravery.

SHIRLEY WELLS said...

Oh my goodness, it was painful just reading about it. I admire your bravery and strength. What progress you've made and in a relatively short space of time too (not that it will feel short to you).

You look great!

mountainear said...

You look fantastic - and sound (on paper) like a million dollars. So positive!

Hope to see you soon.

Fennie said...

Well, you look great. No one could imagine. But what a hell you have been through. Makes people like me who are ready to moan about a bruise or a pimple realise what we have to be thankful for. I am full of admiration. But do take care of yourself now. No more riding camels to Samarkand to buy silk!

bayou said...

You are and will always be my personal hero! I admire the strength and courage and how brave you are and this is absolutely fabulous to see you know - smiling and with smily posts!
You are such an amazing woman and on top of that, you have the talent to write - not only about what you have gone through but also about all these every day encounters. Go on, Debby! I love reading your blog.

Fran said...

Great smile you've got there. Is that a Bailey's smile?

Melissa Marsh said...

You look gorgeous! What a great smile! I am so glad you have made such wonderful progress. I cannot imagine living in pain like that, day after day, and keeping a positive attitude like you have. Bravo! You're an inspiration!

Josh Hoyt said...

I had no idea about your surgery. It is remarkable the recovery you have gone through and how positive you are. You are very brave and a wonderful example.

Reasons said...

You are truly inspirational! And what a wonderful outcome in many ways, you do look fabulous...and so healthy! Keep going and trooping onwards and upwards. Best wishes to you. Joanne x

Suzanne Jones said...

I admire you so much - for your strength in dealing with the procedure and your honesty in writing about it.

And you look fantastic.

XX

stacey said...

Wow, way to be strong and brave, so inspirational!

Colette McCormick said...

You have come so far - well done - you are an inspiration.

Susie Swanson said...

I admire your courage and strength. So inspiring... Susie

lbdiamond said...

My goodness, what a story! Congrats to your progress and healing.

Frances said...

I am so glad that the letter P inspired you to write this post. I am also very glad that your recovery is progressing steadily! On the outside and on the inside.

What you have written about your surgery and the recovery will be so encouraging and helpful to many folks who will read this. They might be facing a totally different sort of surgery, but surely will be heartened by your taking them through the process through which you have traveled.

My past excursions though skin cancer surgery seem minor compared to your experiences, but even so, I always hope to share what I learned with others, so to encourage them to get an excellent doctor and do what is advised.

Scars heal. Health will be embraced.

Love to you. xo

KatieO said...

wow. I'm one of those new followers from A to Z who had no idea. You write about your experience so bravely and so beautifully. So glad you've progressed so far and are doing so well!

Joe Richardson said...

I'll throw my lot in with the others. You look smashing! And it takes a great deal of courage to head into a surgery like that. You're handled it with grace. Wishing you all the best!

Best,
Joe
q: quarter 'til midnight

Empty Nest Insider said...

Very inspiring story! I'm sorry that you've been through so much, but thrilled that you look so well and are not in pain. I hope you continue to heal, and give others hope in fighting this devastating illness. Julie

Debs Carr said...

You're so brave and inspirational and you look amazing. It must have been terrifying to go to the hospital on 13th Oct, but I'm so pleased you're pain free now.

Flowerpot said...

What incredible progress you've made - well done you on all levels. A great example to us all. Keep writing!

Sue Guiney said...

I'm newish to your blog and your story, but it was quite inspirational to read. we can all learn from your lessons....one day at a time, and never give up hope. I congratulate you.

Jenny said...

This is my first visit to your blog--I'm stopping by via A to Z--and I'm amazed by your story. Thanks for sharing it. I'm so glad you're feeling more like yourself again!

Talli Roland said...

WOW! You look absolutely beautiful -- and what a journey you've been on; how brave you've been and how far you've come!

I hope you're going to do lots of celebrating this summer.

Jennifer said...

I am glad you are pain free. Thank you for sharing this story of strength and bravery.

cherie said...

You are one amazing woman! I am blown away by your story. I wish you the very best and I hope all goes well with you. Keep on writing and pursuing your dream.

Linda H. said...

What an experience. I am glad you are healing.

I have TMJ caused by a misaligned neck, so I understand that part. It can be incredibly painful at times. To be honest, I have never heard of Behcet's. I guess I will be googling it now.

Thanks for sharing your story.

David/Dad/Doc said...

I stumbled upon your blog entery about your TMJ surgery. You said that your problem was attributed to your Behcet's diseease. I am a Dentist in Utah, USA and have been studying Behcet's for the past 7 years since my wife was diagnosed with Behcet's. I have believed for some time that Behcet's can affect the TMJ because it has an epithelial lining on one side of the joint that embryologically comes from the same origin as the lining of the mouth and gut. My thought is: Same origin, same genetic target for the autoimmunity. Your case is the first time that I have heard of anyone else attributing TMJ problems to Behcet's. I would enjoy communicating with you and/or your doctors that came to that conclusion. If you are willing, please email me at davidpetersendds@gmail.com I realize this was an old post (from 2011), but I hope it still gets through to you.
David Petersen DDS

David/Dad/Doc said...

I stumbled upon your blog entery about your TMJ surgery. You said that your problem was attributed to your Behcet's diseease. I am a Dentist in Utah, USA and have been studying Behcet's for the past 7 years since my wife was diagnosed with Behcet's. I have believed for some time that Behcet's can affect the TMJ because it has an epithelial lining on one side of the joint that embryologically comes from the same origin as the lining of the mouth and gut. My thought is: Same origin, same genetic target for the autoimmunity. Your case is the first time that I have heard of anyone else attributing TMJ problems to Behcet's. I would enjoy communicating with you and/or your doctors that came to that conclusion. If you are willing, please email me at davidpetersendds@gmail.com I realize this was an old post (from 2011), but I hope it still gets through to you.
David Petersen DDS