Supporters UNITE!!!

I have been VERY quiet on this blog for the past month and I wish I could say it is because I have been so busy enjoying every second pain-free since my surgery in August. Unfortunately, most of that time has been spent trying to explain to those I have come into contact with, especially at work, that the surgery was a pain management intervention and was not, and never could be, a cure.

I have also become almost completely riddled with guilt this past month. Not the guilt that I spoke of a while back "May the guilt be with you" in another post, that guilt that prevents you from giving in to the temptation to live up to the "suicide disease" nickname. No, this guilt is about me feeling that I'm always complaining, that I've completely destroyed so many good relationships and family activities because others have to consider my ability to function through the pain. This guilt is one where I almost feel like I would rather just keep my head down, be quiet and try not to make everyone miserable because I am in pain.

It is something I am really struggling with, especially after surgery. I have relief in the 2nd branch of the nerve, and it is wonderful. I am grateful for it. BUT. I still have the same pain I had before, only now it almost feels more amplified in the the 3rd branch of the nerve and in the ear. So yes, my silence has been a difficult one, and I suspect, one I will struggle to push past for a while.

This has also brought me to the title for todays' post. It is October 5, 2015, the 3rd international TN Awareness day and my Facebook timeline is almost completely teal!!! Granted, it is because most of my timeline is full of posts from fellow TN warriors, from TN support groups, etc. But there is also the odd post and shared post from personal friends and family, and this warms my heart. The awareness day this year is dedicated to the children who have to live with TN, contrary to what most of the literature says is the case. Children with TN, who are not believed, because they do not fit the criteria for TN patients with regard to age. The support from all the online posts and buildings lighting up teal in the US, Australia, UK and Canada are awesome, but I want to make special mention of those who support me.

I want to thank my family, immediate and extended, for believing me and supporting me with calls, hugs and lots and lots of understanding. I want to thank the friends, the true friends, who have not decided I am too high maintenance and still invite me over or come visit or call to chat. I want to thank colleagues and management who have taken the time to try to understand more about TN and who have provided me with the opportunity to work from home on a more regular basis so that I can function at a better level than when I was expected to work in the office every day. I want to thank my TN family, the ones who I can literally call on day or night when it all gets too much. I cannot and would not want to go on without all this support.

Sadly, there are many of the TN warriors out there who have NO support. Who have lost their spouse/partner because they can't handle the all-encompassing way this pain affects us; who have had their children pull away from them; who spend all day alone at home without a single person wondering how they are; who are physically, financially and emotionally abused by so-called loved ones.

My awareness day post is a plea. A plea for those who know someone with TN to support them. My awareness day post is a heartfelt thank you. A thank you that cannot be fully expressed for those who have shown support for me and many others.

My goal is to work towards an awareness day next year where more public awareness in South Africa is a reality, but for now, I will continue to #TurnTheWorldTeal, one post at a time.

There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader

Are you better yet?

As children, we went on many road trips with our parents and I am sure that, just as my kids do now, my sisters and I often asked the dreaded four-word question: "Are we there yet?" *insert nagging voice here*...... As much as my parents, and now us as parents, dreaded that question, it was and is a natural question to ask. I am going from point A to point B, so naturally, I want to know how long will it be to get to point B, even if this means that I literally left point A, 2 minutes ago.

In the same way, human nature and society tells us that if someone is ill, there are two outcomes. Point B, in the case of illness, is either return to full health or death. It may sound callous, but that is just what we have always known and have come to expect.  Chronic illness messes with that concept though. I can definitely say that TN has completely screwed up that premise for me. I did understand the concept of chronic illness prior to this, however, I don't think I ever truly grasped the complete frustration of the person living with that illness and knowing that no matter how many times we ask "Are you better yet?"....the nature of their illness is that they are not going to get better. So to use the roadtrip analogy here....I think I've begun to experience the dreaded four word question now as, "Are you better yet" with the same frustration and, at times, annoyance.

I've stated the following in an abridged version on Facebook this week and have had a lot of time to contemplate how to write this post since I've had my surgery. I know I'm running the risk of offending someone, or maybe a few people with my opinion in this post. However, I will continue to remain true to myself and style of blogging about TN and present you with my reality, the truth with which I live daily.

It's now been 3 weeks since I had brain surgery. A few facts about it, in simple terms:

1. It was endoscopic transphenoidal surgery i.e. they went in through my nose to the skull base, drilled through the skull and then used GPS navigation, cameras and other tools to perform the surgery.
2. Surgery lasted 6 hours and the doctors removed quite a large portion of the tumor growing in a very delicate part of my skull. 
3. It is still benign, i.e. has not spread to other tissue other than the skull bones themselves, but is growing.
4. Scans on the morning of the surgery proved that the tumor was growing much faster than they thought, and putting pressure on the brain itself, regardless of previous treatment and that it was a good thing they went in when they did. 
5. They did not remove everything, there is still a portion of the tumor growing on the side of my head, the part they removed was in the middle.
6. The portion they removed was attached to major arteries and compressing at least 4 of the cranial nerves. With each pulse of the artery, pressure was being placed on the nerves, hence the random electrical shocks I was getting in my face and eye.
7. It will take up to 6 weeks for all the swelling to subside and full healing to occur after surgery, that is, healing of the tissue they cut through or on.
8. I will be needing more treatment to try and manage pain and hopefully the rest of the tumor (medication and possibly more surgery).

Now, getting to the point of my post.
In the past, I was jealous, insanely jealous, of those who were able to have surgery for TN. Because of this, I couldn't wait to have mine done, if only to be able to know that I had tried everything possible to manage my pain. This is not to say that brain surgery is to be taken lightly. It is one of the treatment options available to some TN patients, and has a good chance in many of them to provide up to 80% relief from pain for as long as 10 years. Note, it is not a cure. I was told by the doctors that I had a 50% chance of having relief from pain if surgery was to be successful, especially considering the location and size of the tumor. Not having it provide complete relief is not proof that the condition doesn't exist, neither is it proof that its' all "in our heads - figuratively speaking", as many TN warriors have had to hear post-surgery.

My emotional and psychological state right now, three weeks post op, is one of anger and frustration at the fatigue and pain I have been experiencing. Neither of which is helped by what seems to be the daily "are you better yet" questions I hear. The only way I can begin to answer that is to say that I still have pain. I have moments, like I did before, where it feels as if an elephant is head-butting me in the face, where I can literally feel a knife stabbing me in the jaw, where a fire-poker is stuck in my ear and being jabbed in and out over, and over, and over again.
I don't have electricity randomly striking me in the face, and for this I am grateful. I am able to tolerate, and therefore enjoy, kisses from my girls and husband on my cheek. That is about it.

I am struggling to understand how my honest response to people has been met with statements like "don't worry, I'm sure it is going to all go away soon", "oh, but I'm sure it isn't as bad anymore", "we continue to pray because we know it is going to go away" or " I"m sure once you recover fully from surgery you will be cured."  Perhaps it's that "Are we there yet" mentality. Don't get me wrong. I appreciate the support I get and the prayers offered up on my behalf. I love so many of the people who are truly caring and concerned for me. I do not doubt for one minute that most, if not all, of the comments are made with the utmost sincere belief that they are true to the person offering them. I am however feeling as if I am expected to say that I'm better. I feel that there is an expectation of the surgery having been a cure and this expectation is confirmed especially when I see the expression of confusion or disbelief on someones' face as I tell them that I still have pain.

Trigeminal Neuralgia, when caused by a compression on the nerve, leads to damage of the protective sheath around the trigeminal nerve. This is what causes the pain (think of an electrical cord with constant rubbing or pressure on the outer covering until the wires are exposed). Removing the compression is not guaranteed to remove the pain. That nerve has suffered years of pressure and as a result, damage. Medication may minimise pain by decreasing the random firing of the nerve (already proven not to work for me). Again though, all treatments, including brain surgery, are there to manage the symptoms of pain in TN patients, but it can't cure the condition. This is what incurable means. I am not being negative, I am not being ungrateful, I am not suffering from a lack of faith.....I am being a realist. Incurable, that is currently the label attached to TN as an illness. This means that I have had to change my understanding of what the outcome of surgery or treatment may be for me. It means I have to re-conceptualise what Point B is.

Point B may be coming to terms with adaptations in my life and then living in the moment. Point B is likely to change as the years go on. Perhaps I will try to take the trip as it comes. Move from Point A and just keep on moving, forwards, backwards, sideways....who knows.  At the end of it all, my TN Point B is not death or full recovery. I know that. I just wish, so desperately wish, that the chorus from the back seat was not constantly "Are you better yet?" I hope, beyond reason, that those not driving on my journey will try to appreciate that it is my journey and right now, there is no destination. You're welcome to join me for that journey, I love company, please just remember, no four word questions allowed.

There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader

FAR from normal

I've been avoiding this particular post only because I am trying to figure out a way to write in as positive a manner as possible, while staying true to my realistic approach to life.

I am FAR from normal. Yes, I know that normal is relative and honestly, normal can be boring for many people. I'm FAR from normal because right now I am filled with Fear, Anticipation and dreading the Risk of what I'm about to do to achieve a sense of normality. Normal in the sense that I want to be able to open my front door when someone knocks without first having to cover myself up like a mummy and literally hide behind the door when I open it. Normal in the sense that I would like to work Monday to Friday without a second thought and definitely without the pain and fatigue that results from doing so. Normal in the sense that intimacy with your spouse isn't a complex series of avoidance of touching while all you want to do is hold each other. Normal, normal, normal.......

In a few days time I will be going under anaesthetic for a surgical procedure called Transphenoidal Endoscopic Skull Base Surgery.  

In this procedure, the skull base surgeon (an ENT who has specialised in skull base surgery) and the neurosurgeon will go into my nasal pasages and cut through to the base of my skull. Using a GPS navigation system, they will carefully work on removing the tumor piece by piece over a minimum of 6-8 hours which has slowly been taking over my skull base and is thought to be the reason for my TN and other cranial nerve pain. The tumor is full of blood vessels and located adjacent to my brainstem and carotid artery, not to mention the other nerves. So, according to the doctor, they will literally have to move a maximum of a millimeter at a time and remove a piece of tissue, stop the bleeding, and then move on and repeat.  This particular surgical technique boasts impressive recovery times and minimal risks when used for removal of pituitary tumors. Obviously, mine is not a pituitary tumor, or in fact, one which any of these surgeons have removed before. I guess there always has to be a first time for everything.

I have a 50% (optimistically) chance that it will work in terms of helping with my pain. There is also the risk of complications. Honestly though, I am accepting this risk with the support of my family because there really is no other option. 

This got me thinking, for all the TN warriors out there who consent to surgery, we are all plagued by the fear, anticipate the potential relief and acknowledge the risks involved. Brain surgery is not something to laugh at, as with any surgery. However, when you are in this much pain, you honestly would pay a guy on the street corner to cut off your face with a chainsaw in the midst of a severe attack. I for one am grateful that technology has advanced to allow for this endoscopic surgical technique, as, in the past, skull base surgery would require literally removing a part of my face and lifting the brain up in order to get to where this particular bony tumor now sits.

Funny how TN patients can talk about brain surgery as if it is a trip to the dentist and vice versa. Strange how many around us do not realise the magnitude of the actual decision to do this and the utter devastation we feel when we are denied surgery by so many doctors. 

I don't know if it will work. I don't know if this is the last time I'll go under the knife, though I know that if it doesn't result in any relief, I will most probably be willing to go for any other procedure available. And that, my dear friends, is how desperate this disease can make you. How absolutely ridiculous it can sound to us to hear someone say that we should learn to make the best of it for the rest of our lives and NOT go for risky surgery. 

An so, I sign off today while reminding every single one of my fellow warriors.....Do Not take no for an answer. Keep searching for a doctor or team of professionals who realise the importance of achieving a sense of normality, a team who will walk down the path with you to the point where you are happy to be able to say you have done everything possible to deal with the hell TN has put you through. It may be surgery, it may not be. Whatever the case, keep fighting until the Elephant on your face becomes an addendum to your story and not the introduction and conclusion.





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Struggling to remain visible

I studied to be a physiotherapist and after working in clinical practice for a short while, I began lecturing at a local University. As a physiotherapist, the primary function of my job and those of my students and future colleagues, was to ensure that we enable patients to reach their highest level of function in their daily lives. To do this, it was imperative for me to understand what physiological and anatomical issues were going on in their lives that could result in having an influence on their ability to perform daily activities of living. So my job was to understand ability and disability on a very literal level in order to work with patients in achieving the most they could out of their lives.

Generally, we all see a disabled person as someone who physically shows signs of not being "normal" or not looking like what the world considers an able bodied individual. Someone who is in a wheelchair, has visible signs of downs syndrome...that is commonly accepted as a disabled person; someone who needs special accommodation to be a part of society, right? Are you sure?

The world health organisation implemented the international classification of functioning, disability and health in 2001. Since then, all health professionals have a standardised framework for measuring a person's level of functional ability. This framework takes into account the interaction of environment, society and the body, or physiological impariments. It stands to reason then that it should not be difficult for a health professional to determine whether or not someone is disabled, right? It's been 14 years, and yet, this is not the case. Those, like me, who have an invisible disability are not easily accepted as having any disability at all. We fight for accommodation in the workplace, government or insurance support offered to disabled individuals, and generally, acceptance of the fact that we do in fact have a physiological impairment that has severely impacted on our lives.
I wonder about this and about why we sit with this problem. Is it because we, as a society, cannot move past the fact that normal is determined by outward appearances? Is it because chronic pain isn't recognised as something that a person can't control? Could it be that we, as those who have these invisible disabilities, are hindering our own cause by hiding the difficulty we have in performing basic tasks? If I were walking around with outward signs of what I live with daily, a gaping, open, festering wound on my my face, would I be treated differently from what I am now? The short answer, yes. If I were walking around with my arm in a sling, would you expect me to carry heavy boxes? No. But if I had a chronic pain condition, like the millions who have Fibromyalgia, where the pain could be the same or worse than that of one with a broken arm, would you expect them to carry heavy boxes and be irritated if they said they could not? More often than not, Yes.

So maybe we need to stop hiding behind the facade of normality. Stop hiding the realities of our invisible disabilities for the sake of our colleagues and acquaintances' comfort levels.

I have difficulty doing what I was able to in the past, before TN. I can't open my front door when someone knocks because the wind generated by that action causes ridiculous levels of pain. There are many days where I cannot shower because doing so is akin to standing under a live electrical wire in a puddle of water while someone holds those wires to my face. There are times when I am unable to answer the phone because just saying hello is too painful. There are weeks where I am unable to go to work because I can't even keep water down, or walk because the action of swallowing is so painful that I throw up and walking causes a vibration in the body that sends me into screaming fits of excruciating pain. I am no longer able to work two consecutive days without knowing that it will take at least 4 days to recover. I am unable to speak continuously for more than an hour (which is required by my job) without becoming severely fatigued or experiencing a lot of pain. There is no medication that eases this pain for me (for many other TN warriors, some medication works, but only for a while). There is no cure for TN. It is not terminal, but it it has a lifelong influence on your life and a huge impact that only worsens as the disease progresses.

Is it pretty? NO. Do I want others to feel uncomfortable? NO. Do I want others to feel sorry for me? NO. Do I receive the same acceptance of those with visible disabilities? NO. Will I every get better? NO. Does that matter to others? Well....... I guess that is up to us.

It is up to those of us with invisible disabilities to break the silence. We need to stop tip-toeing around issues that have these severe influences on our basic ability to function in the world we live in simply so that we do not make others uncomfortable. Once we move out of that zone of comfort, that is when change will begin to take place. That is when we can start affecting enough change for organisations to be held accountable for passive aggressive management of employees with invisible illnesses. Change in social benefits and insurance companies policies for who deserves compensation and who doesn't cannot begin before we move out of that zone of comfort.

Perhaps I'm living in a dream world, perhaps I'm not. What I do know is that I will start shouting from the rooftops if I must, I will break MY silence. I refuse to be invisible. I am not invisible and neither is my struggle. I deserve to be heard. I deserve to be seen. My family deserves the support that any family who take on the role of carer should get.

It may be a struggle, but I will struggle to be visible for as long as it takes.

May the (invisible) elephant on your face be gentle today.



There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader

Just between me and you

Hi New TN warrior, I thought I would welcome you to this world with some advice based on what I have learned on this journey so far. So just between me and you...

Firstly, education is key. Make sure you have educated yourself about TN. There are lots of web posts about it, but the more reputable sites are those covering scientific journals and sites dedicated to facial pain research, like The Facial Pain Association or tnnme.com . It's important for your own sanity and for sharing information with family friends and colleagues. More importantly though, it's possible you will come into contact with health professionals who haven't yet heard of this rare disease, believe it or not, and this means you need to be sure of your facts going into a consultation. It's also very important, and I mean EXTREMELY important, to learn that all TN patients may be similar in how they describe and experience the pain. However, for some reason, we all react differently to treatment. What works for some to put them in remission, may not work for others.
Secondly, TN is unpredictable. One day/minute you will feel okay and the next you will feel like you are the source of an electrical storm or that a knife has been jammed into your face...or however you choose to describe your symptoms. It's scary, I know, but something that I am starting to accept.
Next, remembering the first two I have mentioned, it is understandable that you need to be your own best advocate. Your own best weapon as a TN warrior. You are likely to come across a doctor, specialist, emergency room nurse or manager at work that tries to dismiss your pain because either they aren't aware of TN or they see you as "ok" at that moment. This is when your self-education around the disease comes in handy. Your knowledge of TN and the possible treatment out there is how you can know what to ask in a consultation. Your level of understanding about your capabilities in your current pain levels or going in to a possible scenario where you will encounter a trigger, is what you need as a weapon in any discussion with your manager. Do not let someone who doesn't have TN try to dismiss your pain. Don't let anyone force you into a situation where triggers will be inevitable, e.g. having to sit outside in the wind for any reason if wind is your trigger.
That said, something that I really hate to have learnt is that this disease is an unrelenting beast. It doesn't care if you don't have plans for the day or if it's the day of your child's athletic event. It doesn't care of you have just started a new  career and need to be in important meetings. It will attack when it wants to. It's unrelenting, yes, but only you can decide how you respond. If you choose to push through the pain for an important event, you have to know how you will react later (for me pushing through in pain for something I don't want to miss, means days of being incapable of functioning afterwards). It kind of links to the education side of what I have shared. You need to educate yourself about your own limits and be sure that those in your life understand them. I have read many blogs and articles where people with various chronic conditions say that you should remember that 'you are not your disease' or 'don't let your disease define you.' I'm sorry, I honestly don't think that applies to TN. Someone walking past me causes enough disturbance in the air to cause pain...it IS my life! I think I'll leave that sentiment for another day.

Two points I think should be made together, is what I will end my conversation with you on. Find support, either from a family member/members, friends or online in one of the support groups. Your personal, physical support is so important to help you cope on a daily basis. When it comes to the online groups, there are many, find one you feel comfortable in. The value of having others, even virtually, know what you're going through is hard for me to explain. It truly does help. Once you know who really does accept, believe and support you, hold on to them. Your family and friends will often feel helpless because they can't make it better, they can't say 'get well soon' and they can't relieve your anguish in the midst of an attack. You need to acknowledge their helplessness but more importantly, hold on tight to the support you have. You are not alone in this, your acceptance of this last fact is what can keep you going even on the hardest days.
My dear fellow warrior, welcome to the battle, and may the elephant on your face truly be gentle on you today.

There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader

Atypically typical

Trigeminal Neuralgia is often categorised as either, typical (type 1) or atypical (type 2). Type 1 is  where someone experiences intermittent stabbing/shocking/burning sensation in the path of the nerve. It is debilitating and comes without warning or as a result of a trigger. Type 2 is a more constant burning, pressure or stabbing pain in the area of the nerve. I have the unpleasant experience of having both.
On most days, I have an average of the type 1 attacks 5-20 times but always have a constant level of 7/10 type 2 pain. I have been trying to understand the severity of the disease in a way that I am able to explain it to doctors and those around me but often the words just do not come close to providing a true account of what it is I feel.
Most people with TN will speak of flares as a period of time when pain is at a maximum and can't seem to be relieved by medication or any other methods. Attacks are the more sudden, short-lived pain that brings you to your knees.
I have come out of an atypical TN (aTN) flare of 36 hours now and thought it best to just explain it as it is....perhaps someone out there will understand and it will hopefully help them to understand their friend, loved one, or colleague with this horrid disease.
For the past 36 hours I have been unable to eat or keep even liquids down. My husband has made sure that I have at least tried to. The pain has been mostly a sensation of some demon pushing out my eyeball with a knife from the inside, coupled with a knife or ice pick stuck in my ear and a blowtorch focused squarely on my jaw. I struggled to speak, move or focus on anything with my eyes. Vomiting was all I could do, but that just intensified the pain. I honestly didn't care if I wet myself as walking to the bathroom meant I would feel the vibration that comes with moving, so getting to the bathroom was not a priority. What could bring about such pain? This time... Unintentionally turning to face my husband in bed while he was sleeping and having him breathe onto me. It's not his fault,not mine either...I'm just an atypically typical TN sufferer.

During a flare of 10/10 pain my family begs me to allow them to take me to the emergency room. I know that there are people out there who believe that because I don't go to the hospital, it really can't be that bad. However, being on high doses of schedule 6 narcotics on a daily basis, and hearing the accusations from doctors or pharmacists about being a drug seeker already, it seems quite pointless to go to a place for help when there isn't help available. It's a chronic, progressive condition, so a short term knockout by meds in the ER with a dose of irritation from staff is honestly not worth it. In this case, based on the feedback from fellow support group members, I am again, atypically typical.

So today, I am back down to a bearable 7/10 aTN pain and have had a few 8/10 TN shocks.... But I can walk today, I can talk and I can finally focus enough to read and write.
just another atypical typical day for me. Wishing the same for those I know living with an elephant on their face.

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Hard work... For what?

I have been "quiet" thanks to quite bad and continuous attacks lately....it basically sucks the life out of you and I have had to prioritise.

I had a conversation with my husband a few days ago that has inspired this post.

One of the common themes in posts on the support groups for TN is that of "I never thought this is how my life would be..." I can relate and add another commonly used part to that sentence "...at this age."

The conversation I spoke of above followed a similar path. I began saying that I never dreamed this life up for me and my family and then stopped. You know what? I didn't dream my life up. I worked hard, damn hard, to get to where I was before TN reared its ugly head. I put in effort, tears, determination, late nights, worked up to 5 jobs at a time..... And for what? To live one minute to the next, not knowing if I would be able to continue a conversation or if I may embarrass myself by screaming like an incensed banshee in the middle of a meeting? Did I do all I have in my young life for me to become a relative prisoner in my own home only to leave when I really have to? Did I work to prove the naysayers wrong so that I would have to deal with many people not even believing the basic premise of who I am and what I deal with every day?  I worked hard to try and achieve ambitions in a relatively young career and in studies...FOR WHAT????

I think this, not the pain, is probably one of the most difficult parts of coming to terms with TN for me. 

So, for today can I ask you to do me a favour? If you come across someone in your life struggling with a chronic pain condition.... Don't underestimate the effect or impact it has had on, not just their dreams but, their hard work in this crazy thing we call life.

To my fellow warriors, May the elephant on your face be gentle with you today.