Monday, 20 November 2017

Learning to live with limitations

I’ve been up, I’ve been down, I’ve been unwell, I live with pain and sometimes you just have to accept that things are just as they are supposed to be.

This year has been a rollercoaster for me. Battling my demons, taking on my body and fighting between duty and self respect.

I’m not here to share my struggles or my achievements with you, I’m here to let you know, even as you sit reading this, feeling scared or assured in yourself, anxious or calm, in pain or pain free, stressed or relaxed, tired or rested, lost or empowered, weak or strong, ashamed or proud, sad or happy, hopefully or hopeless that every moment you are living… you are doing just that. Living! You are awesome! You (your body) and your mind are doing several million processes all at once; breathing, smelling, sitting/ laying, standing, holding a phone, tablet or sitting with a laptop or computer, reading, seeing, holding your head up, healing, digesting, your heart is pumping oxygenated blood around your body. And a whole host of other processes!  You are just awesome! Yes your body might be in pain, or behaving in a distressing way or not working at a optimal level, but you are here, reading this, possibly searching the internet for answers, learning, connecting, communicating, influencing. You are here and you are doing the best you can.

What has 2017 taught me?


If I were to summaries what this year has brought me, I would summarise it as a sense of oneness and a little bit of acceptance. Not fully, but a little.

My limitations may always be there, but my body is amazing and I need to be thankful for that. The immense pain, the stress, the exhaustion, it’s me and that’s ok. It may have taken me 7 years longer than it should have but, I respect my body and what I do every day just to get through. Thinking back to just a few short years ago when I couldn’t even hold my “fat head” up for more than an hour, or stand in a queue for longer than 2 minutes or walk from my house to my car or get dressed unaided. Heck there was a time when my mother had to hold my phone up (because it was too heavy) just so I could text my friend’s and family. I should feel proud of that and not be ashamed. Sometimes things regress in life, you feel like you aren’t getting anywhere. Where one day after the other is just a cycle of pain, medication and a pure struggle to just get comfortable or sleep. But there will be moments (be them seconds, minutes, hours or days) where you will do something different. You’ll open your mouth a little wider, you’ll try a chip or a piece of bread, long term pain sufferers, you’ll take one less pill or get yourself out of bed, or call a friend. All while, breathing, pumping blood, thinking, planning, moving. How amazing!

Never belittle your achievements and please try not to compare yourself to others. You are special and amazing and you need to look after yourself.

I know things aren’t perfect, but where possible eat and drink well, open the curtains and the windows and get some fresh air, go for a little walk (if possible), surround yourself with glorious fragrances and beautiful images, quotes or photos, drink water, moisturise your skin (even if it’s just your hands), do your nails, or go any get them down, take a shower or bath, meditate, be proactive. Enjoy the small things in life and be kind to your body.

Lessons Learned


A few weeks ago I worked myself into a horrible bout of illness. I was sitting on the bathroom floor, in tears at 3am, bladder on fire (girls you know), kidneys in agony, vomiting, shaking, sipping water waiting for the antibiotics and pain meds to kicked in. I crawled from the bathroom to the bedroom, picked up my blue bunny (the one my nanny bought me and my favourite pillow), my phone and a lighter. I literally crawled back into the bathroom, lit the candles by my bath, turned off the light, sat on the floor, put on some soothing meditation on by Louise Hay and cuddled my teddy. I stayed there for some time, waiting for the meds to kick in and trusted everything was ok and I could trust my body to let me know what to do. I made a decision right there and then, enough was enough, I had to put myself first. Running my own business and working 60 hour work weeks was not sustainable. And what was I achieving. I had no quality of life, no friendships, relationships, hobbies, or self care, it had been months since I went for a massage, saw a psychologist or eaten properly. What was I doing to myself?

I was so scared of work drying up, letting my clients down, or worse letting myself and my family down that I was on the treadmill. I need to be able to pay my bills and I was scared that if I did get off that treadmill, I wouldn’t be able to get back on. I thought a few hours off a week will work ok, my body had other ideas. I was enduring the face and neck pain daily, pumping myself with pills and Sumitryptan nasal sprays. I started amitryptline again, dulling down my nerves and sending me to sleep every night. But now, I sat on my bathroom floor helpless and out of control. The only way things were going to get better was by partnering back up with my body and working as a team. I couldn’t keep mistreating it and not listening to it. After all it’s the only body I’ll ever have.

I’m back on the road to recovery now, eating better, working less, drinking more water, topping up with vitamin rich foods and supplements, signed back up with a psychologist, go for a massage every 2 weeks and I’m starting with a personal trainer on Wednesday doing 30 minute sessions per week.

So what I’m trying to say here is, whether you are recovering from jaw surgery, dealing with pain or just not treating yourself right. Acceptance of the current state of things and putting yourself and your mind and body first is so important. Trust me you deserve it. Be patient with yourself. You know you are doing a bloody great job!

This marks the start of a new phase in my life and I am looking forward to getting back to you all and my blog. I have several blog post ideas lined up and I am excited to get writing again.

Speak really soon!
I am back!

Steffie x.x.x



Wednesday, 15 February 2017

Bad skin and sore lips after jaw surgery

After jaw surgery your body will be full of drugs and anaesthetic. In most cases you will not be eating or drinking as much as you usually do. You may also be covered in the yellow iodine used to clean the area during surgery. As a result of these factors you may find you break out in spots or hives. Or alternatively, you may find your skin is very dry and peeling. Providing you do not have any external scars you can resume your usual skin care routine and make sure you drink plenty of water. However, if you have external scars, like I did, you may have to adapt the way you clean your face.

Cleaning my face after surgery


After surgery I had several external stitches and as mentioned in my previous blog, a very sore bloody nose dot between my eyes. When I was first home from hospital I cleaned my face using cotton wool and warm water (avoiding the wound areas). It is really important that you use a mirror and fully wring out the cotton wool to avoid any drips falling onto your wound sites or stitches.

Within a few days I was using sensitive perfume-free baby wipes to wipe my face after food or medicine. These were great for a quick freshen up. My skin was really dry, red and at times was very sore. I invested in a good night cream for sensitive skin by Olay and used cotton wool with E45 after I had a bath. Other patients who have very sensitive skin suggest using organic Aloe Vera products during their recovery. Personally, I have tried quite a few of these natural products and none of them worked particularly well and none of them provided the level of moisturisation my skin needed. However, this isn’t to say that they will not work for you.



Very sore peeling lips


During the surgery the main body of work happens inside the mouth, but on rare occasions small cuts can be found around the mouth area after surgery. This is due to the extensive pulling and stretching of the mouth during surgery. These small cuts are usually less than 5mm in size but can be quite tender and red in the early stages of recovery. Something that I was all too familiar with during my recovery. When I woke up I remember feeling like someone had tried to literally rip my bottom jaw off. My lips were so swollen and cut that I did not think I would ever be able to shut them again.

I had a very sore and dry mouth area after surgery. Each corner of my mouth was quite swollen, sore and slightly ripped. To combat this, I used Vaseline in the early weeks after surgery and bought an intense lip moisturiser once my lips started to properly peel and heal. It is important to note that this is completely normal and the area of redness can last for up to 10 months before fully healing. It does not usually leave a permanent scar.



Stitches removed after jaw surgery


Once I had my stitches removed, my surgeon told me to moisturise the area so the scars would fade. I used e45 body lotion on my face every day and also rubbed a small amount of vitamin e oil onto the scars before bedtime. My scars have almost completely disappeared and the only time they are noticeable is when I point them out to someone on a sunny day or when I have a tan (scars do not tan).



It is not uncommon for people who have had this operation or similar operations to have skin complaints after surgery. Some patients I have spoken to have had really greasy and unmanageable skin after surgery. Others had a very similar experience to me. I am lucky because my skin is no longer dry and I do not get any spots or skin complaints since the operation and this is the same story for most other jaw surgery patients.

Please can you take a moment to like my page: www.facebook.com/steffiesstuff

And please feel free to follow me on Instagram: www.instagram.com/jawandface and Twitter: www.twitter.com/jawandface

Many thanks for reading.

Love always,

Steffie

x.x.x






Wednesday, 11 January 2017

The Nose Dot

So what exactly am I talking about here? After surgery I woke up in the recovery room, in agony and totally groggy. I woke up with weird numbness and a crazy level of pain radiating along my jaw, down my neck, back and shoulders. meaning I was completely paralysed in these areas and unable to move my head. On top of that, I had a splint in my mouth, which was not holding in place my bottom teeth, as I now had a 3mm overbite and I had a lot of excess saliva in my mouth. Anyway, besides all of this going on, I was very aware of how painful the bridge of my nose felt. It was so painful that I actually thought it had been broken. I didn't remember my surgeon talking about a nose job and I had no way of checking what was going on or why it hurt so much. 




I was wheeled back to my room an hour later to be welcomed by the sight of my mum's horrified face. I had external stitches and a noticeable red dot in between my eyebrows. All of which I was totally unaware of and too drugged up to care about. 

After a couple of days in hospital I was able to look in the mirror and see the images mum had taken of me on her camera phone. It was then I noticed the bloody scab between my eyes and what seemed to be the main cause of all my nose pain. 



Before I was discharged I had to have the splint removed by my surgeon's assistant. It was causing me to gag and produce a lot of saliva. And it was also restricting me from drinking and swallowing properly. When he removed the splint I was finally able to talk with a little more clarity. It was then that I asked what had happened to my nose.



My surgeon's assistant went on to tell me that the dot was caused by a pin that had been inserted into my face during the operation in order for my surgeon to use as a reference point to align my jaws. He assured me that my nose wasn't broken, but admitted that he was quite baffled as to why it was causing me so much pain. 

Over the next few weeks I visited the hospital for a weekly check up and was told to avoid my stitches when washing my face. I was told that my nose dot would disappear within a few weeks, the pain would subside and the dot would simply dry up like scab and fall off. 



It went on for weeks. I was careful not to scrub it and gently patted it with wet cotton wool when I washed my face. Eventually the scab fell off, revealing what I felt like, was a mammoth hole in my face. As we can see from the images, it was not big, nor a hole, but merely a small dent. To be honest, I was mainly annoyed that I'd never been told anything about this pin or the possibly of it marking my face. Thankfully, the pain in my nose had died down and I was only left with the dent. The dent that I still have to this day. 


Wednesday, 28 December 2016

I still wear my retainers

Hi All,

Hope you all had a good Christmas and are all prepped for the New Year. With most of this week off work I thought it would be a perfect time to blog about my ongoing retainer drama.

Believe it or not, I still wear both my upper and lower plastic (Essix) retainers at least one night a week. Although my surgery was over 5 years ago, I still suffer from muscular and nerve pain in my face, neck, shoulders and head. This is made worse when I do not wear my retainers at least one night per week. The retainers not only keep my teeth in position, but they also act as a vice holding everything neatly in line while I sleep.

When I initially put the retainers in, the lower ones always hurt and feel tight. A painkiller usually settles this down and I use a heat pad around my face to relax my muscles. Once I get off to sleep the pain subsides and does not return. When I take the retainers out in the morning they are rather disgusting, my teeth feel horrible and smelly, but both my face and teeth feel better for it.

A decade ago, wearing a retainer for more than a year or so after brace work was unheard of. But recent evidence has shown that the only way to 100% guarantee that your teeth won’t move and they remain straight is to wear a retainer once or twice a week or a fixed retainer indefinitely.

Do I have to wear retainers for the rest of my life?


It is a commonly known fact that the roots of your teeth are held in place by fibrous tissue that stretch and adapt while undergoing orthodontic treatment. Some of these fibres are moved and remoulded while undergoing orthodontic treatment. But not all stay that way. This means that the fibres that do not remould or stay in their new position try to spring back to their original positions. Thus, causing your teeth to move with them. Without braces or retainers to hold them in place, relapse can occur. Some people are lucky and their teeth do not move post-orthodontic treatment, but for most of us they do. I do not know about you, but I do not fancy going through any of this again.

So coming to terms with the fact you will have to wear retainers for the rest of life is a bit of a tough one. I do not like being reminded of my operations and it is hard to explain to new people why I have a jar in my travel bag that looks like false teeth. But there really wasn’t another viable alternative for me. While there are several options for retainers: Hawley, Essix and Permanent retainers, my only viable option was the Essix retainers. Hawley retainers made me gag and produce so much saliva I almost drown. And Permanent retainers restrict proper teeth cleaning. When I was young, Sidcup hospital took a lot of teeth out, much to my later orthognathic team’s dismay. This means that while my teeth are straight, I have larger gaps between them and I must floss and get them cleaned a little more often that the average person. This in turn means that a Permanent retainer was out of the question for me. On top of this, the last time I had a fixed appliance added to my back teeth, tissue grew over the metal and these had to be yanked out.



Cost of retainers


I have had my retainers now for 5 years and I have had them replaced by the hospital free of charge 2x. I have now been discharged for my orthodontist at Guy’s hospital, so if I needed a new retainer I would have to go to central London and pay £150 for each new retainer or £300 each at my local London dentist. A few weeks ago, right before Christmas my trusted bottom retainer broke. I have had this retainer for 4 years and it simply split in half. Ok I hear you say, no big deal. Well the problem was I had not worn my retainers for a couple of weeks previously because I was very unwell with sickness and Kidney issues. All in all I had not worn my most needed retainer for almost a month. My teeth were painful, my jaw was being pulled in a different direction and my neck muscles were in a right state. Working and living up in Essex and having a busy work load in the run up to Christmas meant I had little time or option but to try and source a local alternative and hope they were not £300 each.

After a quick Google search I found 2 local dentists who provide orthodontics and retainers. After emails and telephone calls neither got back to me. It was then I remembered one of REM’s clients Thaxted Dental now provided orthodontic treatment. After a quick email, I was provided with a quote for only £69. A whopping £81 cheaper than the hospital. I booked an appointment for the same week and was on my way.

Being the first time in 11 years since I let anyone touch my face, jaw or teeth, I was a little scared. I even cried before I went in. But they were lovely and really put me at ease. The impressions were taken first time and they used the correct size mould. Often the hospital try to use huge moulds that hurt my jaw and face and they end up getting the paste in my hair and all over my face. But Thaxted Dental were great and really knew what they were doing. I was so impressed I even booked myself a hygiene appointment for the end of January.

I received an email to collect my retainer the day before Christmas Eve and popped by before work to pick them up. Unfortunately, I did not have enough time before the Christmas break to book an appointment and I was really desperate to get my bottom retainer. In hindsight, it is always best to get the dentist or the ortho to fit the retainer and ensure it doesn’t rub or dig in anywhere. When I got home I realised the retainer had a few issues and was really tight. So, tight I almost couldn’t get it off again. It digs into my gum and it is quite low set compared to my hospital equivalents. The retainer itself is also quite a lot lighter and thinner than my previous hospital made ones. I am going back on Friday to have it filed down and adjusted.

In a panic and in agony on top of Christmas, I decided to try and put the two broken pieces of my old retainer into my mouth.  Luckily, they fitted and they did not cut my tongue. I also booked myself for a hot stone massage at a beauty salon not far from my house. It was heavenly and I felt so much better after a massage, some pain relief and a good night with my retainers in. I have been wearing these on and off for the past few days as my teeth are really tender.



How to clean my plastic retainers?


This is a question I get asked a lot and I always couple this with some friendly general oral hygiene advice. When you first get your retainers you will have to wear them most of time and eating and drinking can become quite a chore.

While you are wearing the retainers continuously, please ensure you brush every couple of hours and avoid drinking anything that is not water while you wear them. When it comes down to wearing them of a night time only, this is when it becomes a lot easier.

So here is my routine for cleaning and inserting my retainers:


  1. Brush your teeth using an electric toothbrush using a standard toothpaste.
  2. Once complete, floss and follow up with a non-alcohol based mouthwash.
  3. (Optional): I then use a baking soda based toothpaste (e.g. Eucryl or Arm & Hammer) but you can use your general toothpaste.
  4. Simply brush your teeth again lightly moving your brush in circular movements around all your teeth. At this point you do not rinse your mouth out.
  5. Using a brush and a little dot of the same toothpaste, pick up your retainers and generally clean them.  Rinse them under the cold water tap and place in your mouth.
  6. After you wake in the morning, remove the retainer, rinse under cold water and place into a cup or container. Thoroughly brush your teeth, floss and use a gentle mouthwash. Moving back to the retainer container, pop in some cold water and a Steradent tablet. Yes, the same type your nan uses for her false teeth. Leave the retainers to soak in the cold mixture for the rest of the day and rinse and brush again before wear.


After going through years of braces and surgery it seems silly not to look after teeth and ensure that you can enjoy your new bite and smile to the absolute maximum. If you do not regularly clean your teeth and retainers properly you will find your teeth will start to become translucent, stain and decay. Moreover, you retainers will need to be replaced more frequently and that can become very costly.

So, there you have it, a run down of my pre-Christmas retainer drama and my top tips on how to keep your retainers in great condition. I will be blogging more in the New Year and I look forward to speak with you all then.

In the meantime, wishing you and your loved ones a Happy Pain and Stress Free New Year and a prosperous 2017.

Talk soon.

Love Steffie.

x.x.x


Wednesday, 21 December 2016

Jaw pain in the Winter

Winter is finally upon us and although mild weather so far, I still find my jaw plays up horribly. Cold, damp, foggy or snowy weather is the arch enemy of us jaw patients. 

Ever since my first surgery back in 2011 my jaw has played up terribly in cold weather. At first I thought it was all to do with the metal plates and screws, but as the years have gone on and my plates have been removed, I have come to discover that it much more complex than that.

When I had my upper and lower plates and screws in place, the cold would literally sting my face and nose. I was really uncomfortable and at times it was so bad it made my eyes water. A year after my original orthognathic surgery I asked my surgeon to remove all my plates and screws. The upper screws were in my naval cavity and causing horrible sinus infections and because of the lack of flesh around my lower jaw, the lower screws were close to the surface and causing my nerves and muscles to fire up.

I had my plates and screws removed in the December of 2012. After my plates were removed I could breathe so much better and more freely and there was a lot let tension around my lower jaw. However, I still found it really painful to go out in the cold.

According to studies, changes in barometric pressure and temperature drops can trigger pain by causing air pockets throughout the body to expand and/or shrink, putting pressure on the nerves and muscles. Winter can be the worst for jaw joints because the atmosphere is continuously altering and becoming colder. In warm, dry weather, your joints tend to be naturally looser, but they can tighten up, tremble, and contract when it is cold or damp outside.

So here is what I do to try and combat the cold:

1. I try to reduce the amount of time I spend outside in the cold and opt for warm and comfortable locations. I am practically a hermit in the winter months and I really look forward to getting home and snuggling up on the sofa with my neck support and warm blanket.

2. I opt to always wear a scarf, inside and outside. When I am indoors, I drape a scarf around my neck and shoulders to avoid drafts and chills. When I go outside, I wrap the scarf around my face and neck and cover my head and ears with a fluffy warm hat. Some people take it a step further and buy a Balaclava or ski mask to protect their face from the cold. I also always ensure that I wear gloves. Sounds silly, but when my hands are cold it makes me tense up and this puts pressure on my shoulders and jaw. The gloves also restrict the nerves that run from the neck to the fingertips from firing off.



3. When I get home, usually the first thing I do is run a hot bath or have a hot drink and wrap a microwave heat pack around my face and ears. When I have a hot bath, I try to add Epsom bath salts and some aromatherapy oils to help clear my airways and help relieve the pressure and compression on my sinuses caused by the cold weather. This feels so nice when I am in a lot pain and it is one of the things I look forward to most.

4. After my hot bath or shower, I also use SBC Camphor & Menthol Massage Gel. My friend Theresa bought this for me last year and I only started using it the past couple of months. What an amazing product. After I am fully dry I gently rub it into the top of my shoulders, neck, my temples and my jaw joints and wait for it to work its magic. I wrap up in my fluffy dressing gown and my PJs, take my pain relief and curl up on the sofa.

5. I drink plenty of water. My house is like a remake of Signs with water bottles everywhere. I drink around 2-3 litres of water every day and also drink more black tea in the winter. Green tea is also great to help reduce the amount of mucus in your airways.
6. Finally, I ensure that I maintain a good balanced diet and take multivitamins, omega fish oils, green tea extract, coconut oil, aloe vera, acai berry and raspberry ketones.


I think with most things, we cannot expect to fully escape jaw and face pain at this time of year, but we can treat ourselves with a little more compassion and care. Treat yourself to some TLC, pamper yourself and relax as much as you can.

Hope you find this helpful.

Steffie x.x.x


Merry Christmas and Happy Holidays. Wishing you every happiness this holiday season. Speak to you all soon!




Wednesday, 7 December 2016

You Can't Get Used to Pain!

A couple of weeks ago I was in a really bad place. To be honest, things aren’t that much better now. During this time I had an interesting conversation about pain and my ability to cope. Since the attack at the age of 18 my anxiety levels have been rather erratic. With the anxiety and stress comes more pain. I suffer from migraines, face, neck, shoulder and arm pain. Both neurologic and muscular. This can sometimes completely wiped me out and leave me unable to communicate. The pain is totally debilitating to the point where I feel sick and I can’t form my sentences properly. With this comes total withdrawal; mentally, physically and spiritually. I shut down; emotionally and physically, while I try to deal with the pain. In this time, I find it hard to communicate, I cannot get comfortable and I cannot lift or move my arms and hands freely. This happens a lot and most of the time I can hide it from co-workers or acquaintances, however, I cannot hide it from my family and friends. Especially those who I live with.

While I try to reassure my loved ones, and tell them that I am ok and that I am just in a lot of pain and need some time, it is hard to live with someone who is like Jekyll and Hyde. One minute I am happy and chatty and looking forward to my day, then within half an hour I can be an angry mute who just wants to be left alone. The only thing that really helps is a massage. This relaxes me mentally and physically and loosens the muscles and in turn the nerves. Unfortunately, I am not a millionaire so an on-call massage therapist is out of the question. So for the most part I try to stretch the spasmed muscles and rely on medication (something I hate). Without the medication I would be unable to have any quality of life. 

From being ill a lot of the time, over time people’s sympathy and empathy diminishes. Unfortunately, for us long term pain suffers the pain doesn’t. During the conversation about my pain and my stress my friend said: “surely you should be used to the pain by now!” When you live with pain every day, day in day out, surely that becomes the norm and you learn to get on with it?” He pointed out, that unlike others who think they are dying after one day of a bad head cold, I somehow must have become used to this pain, even immune to it by now and be able to function the same as any other human being who lives day to day without pain.

I know there will be a few of you raging as you read that. I was a little taken aback myself. Especially beings as he is an intelligent chap. But alas, he obviously does not understand. I am not taking this as an opportunity to bad mouth him or discount his view in anyway. He has never even set foot in a hospital in his life, so he can not even begin to understand or sympathise with a chronic pain patient. He doesn’t understand other people or the struggle they go through. The conversation did make me a little sad. Part of me felt weak, needy and angry at myself because I have to rely on people to help me and the other part felt totally sad and helpless. 

For all those people who live with someone with long term illnesses or pain, just for the record you can never get used to pain. Pain is not a natural state of being. Pain restricts your ability to do things and really impacts on your hormones and your ability to feel happiness. Over time it wears you down and it often means that you are more prone to other illnesses and disease. Not only this, but situations that an average person can cope with just fine, can become a big deal for a chronic pain patient. Being in a constant state of pain is tiring and frustrating. And it can also be very isolating.

I know being back at work and working from an office desk can be quite a challenge and that is one of the reasons why I cannot undertake a full time job. By 11-12 o’clock every day out come the strong pain meds and there with it goes part of my functioning brain. I try and stretch out and take a walk to the toilet. But once the muscles have spasmed and the nerves start to fire off, the only hope I have is to numb the pain a little. The rest of my work day is a bit of a nightmare. Lunch is often unappetising and the pain makes me feel sick. When I am trying to type and use the mouse, the nerve running down my neck, arm and hand starts to fire off. This then leads to the trigeminal nerve firing off and my head and neck muscles becoming so stiff and pressurised that I am sitting at my work station hoping that someone will actually chop my head off.

I also can not drive too far or stand or walk for too long. Christmas shopping is an absolute no-no and I opt to buy my gifts online. Doing my own hair is a challenge so I opt to let it dry naturally or when I can I pay the hairdresser to dry and straighten it. Ironing is another no-no, I cannot even lift the board and the iron to get it set up without triggering pain, so I still rely on my mum to help me. Large boxes, bottles, pans, casserole dishes, bags of washing, laptop bags, shopping bags, pull handle doors and anything else that is heavier than a 500ml bottle of water physically hurts me to lift or move.

Unfortunately, for thousands of people all over the world, pain is a constant and daily battle. One that you cannot often see being fought. People often make jokes about my weakness and limitations but it is a reality for me. I would love to be NORMAL. And even typing this now, my eyes are filling with tears. I feel so flawed as a human being. This article isn’t supposed to be a woe is me moment, it is supposed to help you understand what chronic pain patients go through.

Many patients are worse off than me. The drugs cannot contain their pain and they are suicidal and bedridden. Some people are in so much pain they cannot physically talk, stand or lift a thing. I know I am lucky in that respect and I know I need to learn to love myself and embrace the pain because the pain is part of who I am and it has lead me to the place I am at now. Unfortunately, I resent it, I hate myself for not being able to fix me, to be stronger and to be more stable. It is a constant battle, body and mind and one that I know I need to approach with more compassion.

I'm Sorry!


On a final note, I have received a few nasty messages over the past few months and I want to say for the record I am sorry if you think I have let you down. I am sorry I can not be there for you all and make all your pain go away. I feel guilt every day that I do not respond or blog. There are only so many hours in the day and in between my job, running my own house, going to my appointments, dealing with extreme tiredness and my pain and trying to see my mother and brother, I do not have a lot of time or energy to do much else. Mentally and physically I feel broken. When I usually have a spare hour after sorting everything out at the end of a long day at work, I am in so much pain and so drugged up that I can hardly speak, let alone read, reply and blog. I just want to curl up with my heat pack and sleep. Unlike what some people believe, my battle is still on going, I have not been cured and I suffer, just like you do every day. 

I also lost my God Mother Ann in October after her battle with cancer. And this is another reason why I have been so quiet. Ann was one of the closest and most constant people in my life. She has been there for me since the day of my birth, came with me to the hospital appointments when my mother couldn’t make. She was at christenings, birthdays, Christmas and even supported us all when my baby brother Arran died. My mum and brother were able to be with her son by her side when she passed away. She was an amazingly strong and wise woman and I know that me, my brother and my mum are going to miss her dearly.

Despite everything I have going on, please know, I am sorry and I will try my best to get back to you all. I receive so many messages and some often get missed in the message request file. I set up this blog to help people and to make sure people do not feel alone and I know my lack of response or recent blogs goes against that. I cannot make any promises that things are going to get better, because my health has been bad recently to the point where I thought I was going to lose my job. But I will try my hardest to get around to blogging and replying a little more than I am now.

Thank you as always for the support and I shall speak to you soon.

Love always,

Thursday, 25 August 2016

Happy 5 Years Face!

So it's 5 whole years since my surgery. Yay! This year particularly has been a largely reflective time for me. Lots of changes and endings. Lots of repeating patterns and destructive thought processes. It's been a long old journey. Sometimes I wonder whether it's time to pack this all in. To finally close the book on my orthognathic journey. Although the surgery was a huge success in so many ways, there are still a great many things I struggle with. My journey certainly didn't end after orthognathic surgery.




One of the main findings to come out of this year is the whole sinus infection issue. After suffering terribly with constant reoccurring sinus infections after my first surgery, I had both my upper and lower plates removed. This was in hope that it would ease the pain and muscle spasms on my bottom jaw and ease the sinus congestion and constant infections related to my upper jaw. Unfortunately, although the surgery helped with my breathing and nasal drainage it did not resolve the sinus infections 100%. They were definitely less frequent after surgery, but I still experience nasal congestion daily and sinus infections once - twice every 3 months.

I went to see an ear, nose and throat doctor before having my plates removed and he suggested another surgical procedure. But as you all know I am not willing to go through any more surgery, so I refused. In January this year a 6 year leak was discovered at my mother’s house. A lazy plumber had not installed the pipework correctly and the waste water pipe from the boiler was unconnected to the waste pipe. As a result, over the 6 years water and waste dish water had been seeping into the floor and under the foundations of the house. The leak was fixed, but the moisture, mould and damaged floor was not. The housing association finally got around to sending a surveyor, who proposed a list of works; repointing, walls stripped and replastered, floor brought up and dried out and mould treated. They then discovered asbestos tiles throughout the downstairs living area and promptly stopped all work. It was then when they all disappeared. We couldn’t get hold of anyone. The housing officer, the surveyor, the workmen, the maintenance department, no one.

The air is thick with mould. My eyes constantly itch and burn and my nose feels like I’ve just jumped into a swimming pool. My brother has had flu like symptoms for months and my mother’s asthma is terrible. The house we had worked so hard to make nice was now ruined. The mould started making its way upstairs to my brother’s room, the airing cupboard and the bathroom. We moved all of his clothes into my room. We continued to call, write and email the housing association, but nothing. I took it upon myself to message the MP who was fabulous again and wrote to the housing directors immediately. Another 2 weeks went by and nothing. I email the directors myself, the tweet the CEO @Steve_Howlett, write to the MP again and the Ombudsman. More people have arrived to survey the house and disappeared again. I really don’t know what to do. The mould report says it all.




So anyway, after that long story, we now believe that after years of suffering, pain, high temperatures, shivering and having to take constant antibiotics that this leak may be the cause of my sinus issues. Something that could have been completely avoided if someone had done their job properly. Look what negligence can do. To make matters worse Peabody are in no hurry to rectify the problem and in fact lied and told the MP, the ombudsman and environmental health that the problem has been fixed. Oh to be a millionaire and leave the UK!

This year, like all the others since my operation has been a step forward. I now have a steady stream of money and clients and I am becoming more confident in myself and my abilities. I have had the opportunity to work for myself and explore different areas of work I had never thought of. For example, I have fallen in love with online marketing. If it wasn’t for the operation I would be working in H&S or HR for some corporation somewhere. 

On the flip side I have also had to wrestle hard with myself. I get negativity thrown at me all the time and I take it very personally. I hate myself and constantly pick holes in anything I have done. Be it a lost word during a telephone conversation, a spelling mistake on an email or forgetting to do something. I know no one is perfect, but with my medication and pain, I really have to concentrate extra hard on everything I do. So when it doesn’t go 100% right, I beat myself up for it. Why put in all this effort to mess it up anyway? 

I’ve also had to come to terms with the fact that I am 28 and miles behind others my age and so far away from where I thought I’d be. I take comfort in that fact that this time two years ago, I didn’t think I would ever be able to work again. Constant pain and fatigue made it impossible for me to even go to the shops or see my friends. I still have pain every day and I get awful face and head migraines but these are less frequent now. 2-3 times a week, on a good week. I can sit at an office chair for 7 hours now and not have to go home to sedate myself with powerful pain relief. I still take the pain relief but a lot less. 2-4 co-codomol 30/500mg, ibuprofen 400mg x 3 and 20mg amitriptyline daily. I have sumitriptan nasal sprays and diazepam for really bad days. It would be nice to think that by this time next year I will be able to write and tell you that the medication has all gone and I am pain free at last. Let’s keep our fingers crossed for that one!

My assessment for King’s College body dysmorphia clinic has finally arrived. I have that booked for the 5th September. My mum can’t come with me, so my brother has agreed to. I shall let you all know how I get on. Hopefully, this will be the missing piece in the psychological part of my recovery. I have waited for this appointment for almost 2 years now. In that time, I have only seen my psychiatrist and psychologist at King’s 6x. I know I need to work on this side of me. I know this inner bully needs to be quietened down and I need to be less scared of the world. I need to learn to love myself and to believe the good comments and ignore the bad. I am always waiting for someone to validate my self-hatred. When they do, that is it, nothing else matters. All the negative feelings of hate and fear come rushing back. Stef you are a freak, you are ugly, you have put on weight, you are unlovable, everyone you love leaves, you won’t ever have what you want. Look at that chin, that fat, you are stupid, you are pathetic and weak, you have to rely on other people, just give it up, it will make the world a better place. I suppose some of these are normal, in moderation, but this is all consuming for me. These are my 10 commandments. These are the demons I face every time I leave the front door, answer the phone, speak to someone. It is always there looking over my shoulder waiting for someone or something to back it up. And for the most part people have no problem making that happen for me. 



Have that for a deviated chin! Sure many will hate seeing this picture!


Be it a spiteful comment at work, your partner lying to you, your friend letting you down or just some silly troll online. There is enough hate in the world and I refuse to join these people or to stop helping people who need it. 



Well this went a bit dark. So finally, for now, I shall finish by writing a little bit about plate removal surgery. I have had a lot of people message me recently about removing their plates. It is completely common practice in places like Switzerland to have your plates removed after a year. The only reason it is not common practice in the UK is because it costs money. Personally, I am all for removing the plates after a year. It is much more natural and stops future issues with bone growth over the plate sites. Furthermore, you may find that like me, your jaw movement and breathing gets a lot better once the plates are removed. Many people have a horrible time with orthognathic surgery and this puts them off suggesting plate removal surgery. However, plate removal surgery is a lot easier and a lot less painful. Even people who have had their plates removed 12 years after surgery can tell you this. 

Plate removal surgery is day surgery and all work will be done inside your mouth. You will be sore after surgery and maybe a little numb from the stretching, but nothing like the original surgery. My surgeon said I could go back to a normal diet after a couple of days but I stayed on soft food for 1 month after the plate removal to allow the bones to properly heal and for me to build my facial muscle strength. A lot of people do not have the same pain and or problems with muscles tearing as I do, so this step would be totally irrelevant for you. You can go back to work and resume normal activity as soon as you can. 

  • Pain of orthognathic surgery 10
  • Pain of plate removal surgery 6

Average pain levels for me

  • Pain level on a good day 3
  • Pain level on a bad day 6


This time last year, I dyed my hair red to celebrate my transformation and achievement and this year I make a vow to myself. To be honest and to work on myself. To stop cutting everyone out and to really try to love me and everything I have achieved. As always I send my love and strength and hope that this blog continues for many years to come. 

Lot’s of love

Steffie

xx


Visit my new blog site www.jawandface.co.uk for exclusive never before seen images and content. 






Thursday, 28 April 2016

I'm Tired!


I’m tired of people who don’t understand. I’m tired of pain. I’m tired of seeing people I love struggle. I’m just tired. Mentally, physically, emotionally and spiritually.

The day after I found out my godmother has cancer, I felt compelled to blog. My godmother has been there from the day I was born. She lived 2 doors down from us and has been a trusted family friend and guardian for many years. She has had a hard life. Her daughter hasn't been well, she lost her son at a young age, then her
amazing husband (our godfather) and most recently and without warning her lifelong best friend. I supposed after all of that hurt, her body has finally had enough.

Times like this really put things into perspective. You start reflecting on your own life and your own decisions. You start to come to your senses and remember that really, right now, in this moment, is all we have. This can be quite scary. There is no real past or future, just now. I worry about the mortality and the health of people around me. Not in a selfish way, but because I want the best for them and I don't want them to suffer.

Currently my mum and brother are living in a house that has 6 years of waste water under the floors. The kitchen fitters forgot to connect the waste water pipe in the kitchen and as a result all of the water from the sink and washing machine has been gushing under the floors and the foundations for the past 6 years. Mould is starting to form everywhere and to make matters worse the floor under our laminate is asbestos. My mum, brother and I have been so ill. Skin and eye irritation, breathing difficulties, flu like symptoms and nasal congestion. The housing association are dragging their heels. They think that they can come in; lift the lower floors and strip the walls while we live there. It's killing my mum and brother as it is, without releasing it into the air. Mould is toxic and can cause cancer and asbestos can kill you. Mum is so tired from work and family dramas that she just doesn't have the time or the fight left in her. She is the tenant so only she can deal with it all.

Just when we thought everything was going ok, it all falls apart again. It's disappointing to say the least. I just want her and Fraser to be happy and healthy. I don't want her to struggle, no more than I want my godmother or anyone I love. Life and people can be so unkind.

Work has been hectic and I’ve really neglected my loved ones. I worry and have such high levels of anxiety on a daily basis that this mood of fear is all that I am.  I'm a worrier. That's what I do and have always done. My threat system is on constant high alert and the inner bully in me cannot wait to attack and beat me down. I’ve managed to back myself into such a position that I feel like I am trapped and can’t breathe. The hours fly by and I couldn’t tell you what day of the week it is. I'm a total zombie with very few feelings other than fear, worry, exhaustion, anger or in-difference.

A lot has changed over the past few months and it’s all starting to take its toll on me. Having multiple issues and daily medication makes full time work really difficult. I feel like a lot of the medication (especially sumitryptan) dumbs me down and makes it hard for me to concentrate.

I know my pain levels are often made worse by stress levels but sometimes it's just from over doing it. I'm weak. To the point where I struggle to lift a 500g tub of butter. It physically hurts to lift a 500ml bottle. Doing so puts pressure on my arms, back and neck and in turn causes my jaw and face to hurt.

Don't get me wrong, it is a lot better than a few years back when I couldn't stand for more than 2 mins and my mother had to physically lift my head off of the pillow or the back of the chair. I have a lot more freedom of movement. But it still isn't anywhere what I would class as "normal".

I've also picked up a terrible habit of biting my bottom inside lip when I'm feeling stressed or anxious. Which is practically all the time at the moment. As I can't feel it due to numbness, I bite away until it bleeds. Some weird form of self torture, I suppose. But all this pushing and pulling also puts pressure on my joints.

I'm still getting the optical pain caused by the pressure around the neck muscles but this has eased off somewhat since the spring equinox. For those who are interested; the NHS have been doing trials for some time looking to find relationships between cluster migraines and the moon cycles. Having suffered from migraine and nerve pain for over 5 years I can definitely see a difference in the pressure of my head and face before and after the Autumn and Spring Equinox. This could be due to the warmer brighter weather or there might be some truth in the theory of the moon cycles affecting our pain. They control the tides and we are made up of approx 65% water, so why isn't it possible that the moon can affect us?

 


On another note I tried Bowen for the first time last week. Bowen is a relatively new therapy created by the Australians in the 1950's. Unlike deep tissue massage this treatment uses light movements and is mainly concerned with dealing with the fascia. Fascia is the band or sheet of connective tissue and primarily collagen, beneath the skin that attaches, stabilises, encloses, and separates muscles and other internal organs. It links to the whole nervous system.

Each session typically involves gentle rolling motions along the muscles, tendons, and fascia. The therapist then pauses between each physical intervention to allow the body to reset and adapt to the treatment. The appointment takes around 1 hour.

During my session I could feel a slight sting around the area that had been manipulated and then I had quite a few involuntary muscle twitches around my body. This was not unpleasant and the whole experience was actually quite relaxing. After my appointment I was advised to rest and continue with medication and normal exercise (which is non-existent). I was advised not to take really hot or cold showers or baths and to drink plenty of water. I have been to one appointment so far so I am yet to see if it helps my pain levels. I shall update you in due time.

In summery I just want to say, although you may be tired and in pain and feel like no one truly understands, you are loved and valued and by just reading and gaining knowledge you can help so many people. All of the treatments, drugs and struggles, they all help to inform and treat other people. Many of times I've been on the edge of breaking down and giving up and one nice word from a kind heart is all it takes to snap me out of it.

We don't know how long we are going to be here and it's ok to be a little bit selfish. You have to help yourself and take time for you. You are imperfectly perfect and I hope that when you read this you understand that you mean something to me. By reading, sharing, learning or commenting on my content, you are allowing for me to grow and for others to connect with you. I can't always answer all of the questions but you have taken the time to reply and share your knowledge and experiences with my readers. It's so brave and I admire you all.

Until next time my jaw-geous lot.

With love always,

Steffie



Tuesday, 26 January 2016

Who am I after Jaw Surgery?

It’s always great when things go right but I have always expected the worse. I suppose this pessimistic view comes from years of experiencing constant failures and let downs. I do not want this to be a woe me moment or even a poor Steffie moment. I want this to be an authentic view of the world through my eyes. The eyes of someone who doctors would say has depression, anxiety, agoraphobia and body dysmorphia.

As many of you know I have undergone quite a transformation over the past 6 years. A rollercoaster of emotions, fears and loss. Loss of people close to me, loss of my job, my career, my house, my friendships, my family, my old face and my identity. I speak to a lot of people online, girls and boys, old and young and we all have the same fear going into this operation. What if after all of this I don’t like my new face? What happens if the reflection in the mirror isn’t what we hoped to see?

The sad truth of the matter is, there are lots of people who go through with this surgery with the explicit intent of making their face look better. Yes, that would be a great bonus to finally be aesthetically pleasing to people for once in your life but I really feel that this should not be the primary focus when having the operation. I say this from experience. You will never be 100% happy with your reflection because you are looking for the negatives. While I post up selfies in a vain attempt to make the world like and accept me, I see clear as day the bump in my nose, the way it slightly bends to one side, I see the asymmetry of my jaw line and how long and masculine my chin looks. And no I don't need some helpful person to point that out to me thank you! I dream to look like the tanned perfectly petite models with long eyelashes and flawless figures but I know I am far from that.



Why do we all want to aspire to the norm? Surely the thing that makes our species so amazing is how unique we are? The different skin colours, the hair types, eye colours, the shape of our bodies, our height and even our jawlines. Wouldn’t it be great if we could all just accept ourselves for who we are? There is so much more to beauty than a pretty face but society makes us forget that. Instead we all just get in line and try to clone ourselves.  To make matters worse we are a cruel bunch and there are many people out there who would line up to tell you exactly what is wrong with you. In the age of social media we have nowhere to hide. Even if you don’t post pictures yourself, you can bet at some party or event somewhere your picture would have been taken and it will be online somewhere. Why is it so important for us to fit it? To be normal and not to embrace our oddities. Our wonky nose, our one bent tooth, our weak jawline? Maybe after we fix all the flaws we are still unhappy and miserable? I always consider Michael Jackson and the self-hatred he must have had for himself to what to change his face completely? Why do we torture ourselves?

Most of us have been told from a very young age that there is something wrong with our face or our bite and we need to get it fixed when we are older. As we grow up and develop we become more conscious of our differences and all other manner of insecurities start to surface. As a young impressionable teenager we have magazines, Instagram profiles and television thrown at us. Shoving down our necks how we should live, what we should wear, how we should behave and what we should look like. Anyone who doesn’t fall into line and at least aspire to meet perfection is a weirdo or a misfit. A total social outcast rebelling against the natural order of things. Living in modern society is difficult and if you are already damaged/deformed you are not going to make matters worse by trying to be an individual or trying to draw attention to yourself. We want to fade into the background or slowly drift along the stream with all the other ducks and not be singled out or ridiculed. I spent a lot of my teenage years doing this and trying to fit in that I never really had the opportunity to find out who I really was. I never gave myself the opportunity to express my opinion or explore what I liked.

I visiting the hospital not long ago. I am in pain every day of my life and struggle to function on the pain and nerve medications. I get frustrated because my brain is slower and I cannot communicate as well as I once could. I cannot maintain concentration or retain large amounts of information like I once did. I struggle to grip things and I cannot lift, sit, stand or walk for any period of time without feeling a huge amount of pain. I get tired easily and my neck and face cease up. It gets worse in the winter. As soon as the temperature drops a couple of degrees my muscles spasm up and I am left in huge amounts of pain. I try to control it with heat packs and layers of clothes but I struggle when it comes to showering and drying off.

I constantly blame myself for my imperfections and illness and sabotage my happiness because I don’t particularly like myself. I often question if it is all worth it and what contribution a deformed and defective woman could add to the world. I have night terrors and I suffer from panic attacks. I rarely go out alone and if I do, I am on such high alert that I use my quota of adrenalin and am completely exhausted. People who do not have these fears or anxieties will never understand what that feeling is, but I know many of my spoonies will comprehend. It’s not even the pain that gets me down the most, it is the inability to do things for myself. To be a normal functioning human being. I have contemplated suicide on a few occasions but the only thing that holds me back is that I don’t want to be selfish and hurt my mum. Otherwise I would have given up a long time ago.

Anyway I have gone way off track. At the hospital appointment my psychologist and I were talking about my core beliefs and why I feel the way I do and she asked me; “so who is Stefanie? And what does this person like? What brings her happiness and enjoyment?”. Dead silence came over the room and it was then that I realised, I can’t love or like a person I don’t even know. Who the hell am i? and what do I like?

I have spent my life being a people pleaser and doing things that I thought would make people happy. I went to university because I thought that would make my dad love me. I thought that I would get a little more respect at my workplace. I started working in HR and Auditing because I wanted to have enough money to look after my mum and brother and to make my dad proud. I worked 3 jobs as well as full time university because I wanted to look after my family and please my boyfriend at the time. I used to go out for meals and shopping with my friend because she was unwell and had nothing else to do. Even though I was in pain and had very little money. I also went to the pubs and clubs because I wanted to make her happy even though I completely hated going to a place where drunk people could point out my face and make rude comments.  So when in amongst all that people pleasing was I happy? And when did I have time to grow and develop as an individual?

A lot of people have told me to be more selfish but I still find this hard because of the guilt I feel when I say no. This isn’t because it is something I should be doing, but it is because I don’t value myself enough to believe that I deserve anything good.

4 years on from surgery and I was given my final chance to get the genioplasty from the NHS. I never wanted my operation to be about my looks so I said no. But thinking back to it now, it is probably another way for me to keep bullying myself and believing I don’t deserve to be free of this issue. I am wise enough to know that a million operations will not fix the issues I have with my face or my looks. And I am also wise enough to know that I need to start looking after myself and discovering who I really am, away from family, colleagues or friends. So how do I plan to find myself and my identity?


Silly as I sounds I started a Pinterest board in secret and I started looking online for things I liked. I went and got some holiday brochures and newspapers and I started to put together some ideas about things I like. I moved away from the blog for a while and made some adjustments in my life. I made a choice to be more loving to myself and to treat myself right. I started to paint my nails and wear a little bit of make up to make myself feel better. I looked for a new massage therapist and I started reading again. I really got out of my comfort zone and taught myself how to create a WordPress website. I set up as a self-employed freelance PA and met some new people. I wrote letters to the people who had hurt me and I burned them in a bucket in the back garden. I forgave people who had wronged me and I removed negative people and users from my life. Then I distanced myself from everyone in my family apart from mum and Fraser.  My brain really did not want to do any of this. The fear and self-sabotage made me feel tense and uncomfortable every single day. But I tried to push through it. There were tears and days where I couldn’t pick myself up or function and there were days where I felt like I was really making progress.




Things will never be 100% on the health or pain front but I hope that in time I will gather more confidence in myself and rid myself of the anxiety I feel every day.  I suppose what I am trying to say is “be you” and be who you want to be. Don’t feel like you have to fade into the background or please anyone else. You are living your life and everyone is unique, special and beautiful in their own way. Don’t feel disheartened or like your imperfect because good people don’t see that. They see your beauty both inside and out. Don’t be afraid to be yourself and move towards loving yourself, flaws and all. You will be much happier for it. The answer is never going to appear at the end of a surgeon’s knife. The answer is YOU!

Lots of love