The little things

I posted on my status earlier that today was a good day. It was. 

I left the house.

I engaged with others in public.

I laughed and ate and chatted with family.

I even washed my hair.

It was a good day. 

You see, each of these things may seem minor to so many people.

I guess in the bigger scheme of things, they are. 

But

I don't know what tomorrow or the next day will be like.

 One, or all of those things could be impossible for me to do without triggering an attack. 

On a bad day...

It's the inability to do my hair because it's too painful.

The inability to eat.

The inability to hold a conversation for any period of time without pain.

It's the little things.

The little things become the things that allow or block me from living the life I want. The life I expected to have right now. 

The trick has become to celebrate when they form part of a good day, because there's no positive to engage with it when they're part of a bad day.

The little things. 

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

No Hope in sight

Hope
A few years ago one of the recurring statements in TN groups was that we should have hope.
Hold
On
Pain
Ends

I have always known that my pain would get worse. I have always known that there is no cure. As the medication options failed, I had hope when surgical intervention was a possibility.

I had hope.

What happens when that hope is gone? How do you motivate yourself to just live with it. To know that your independence is, and will continue to, slowly being leeched from your existence.  That, just as the hours of functionality in the day reduce, so does your acceptance of the fact that this is life.

That's the thing about pain. It is a very personal experience.  An assault on your being in a way others cannot necessarily see or understand.  Yes, they see the effects. They see and empathise with you from their perspective.  It's all they can do.
It doesn't change the fact that hope of relief is only possible when you die.

So you try to live in a world without hope because you don't want to die.

And that is that.

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

Who's afraid of the big, bad..... Doctor?

It has been a while since I have written here. I have been trying,  and generally succeeded, to focus on living what is my life regardless of what my pain level is on a daily basis. The elephant has been it's unpredictable self as always,  but I am determined to deal with it and live the hell out of my life for as long as I am able to. I guess I reached a point of acceptance, which facilitated a kind of peace. 

I guess you're able to deduce that this has not been enough to truly tame the pain or the turmoil of living in pain, if I am writing here again.  It sucks. I am pissed off and have no other way to describe how pissed off I am than to pour it out in words right here. So if you're reading and continue to read this, thank you. 

In all this time, the 3 doctors who have understood and helped me most, have been like a beacon in a sea of disbelief and health professionals who felt the need to tell me that I was imagining my pain or that my obesity was largely responsible for it. Even those 3, in kindness, enquired about my obesity and recommended that I attempt to deal with that while also treating my pain.

I have done that. I have lost a ridiculous amount of weight, begun exercising and generally improved my mental and physical health over the past 15 months. So the fact that I am now a day away from an appointment I need but didn't want to make is infuriating.  The anger is real. I am angry that I have done all I can do. Physically,  mentally and with medication prescribed over time.

I have done the work. I am studying, exercising,  working and living like a "normal" 38 year old. But I can't continue to lie to myself and ignore the fact that once again,  my TN has changed in intensity or frequency and it hurts. Not just physically,  but emotionally and mentally.  For the longest time, I have had people asking when my next appointment is, when they see or hear that my pain is at an unbearable level. I generally deflect. Why? I don't want to tell them that I haven't been to a Dr for my pain in over 2 years. I don't want to tell them that I am afraid to go because of the "what if" of it all. 

What if there is literally nothing left to do?

What if there is a new medication but it puts me back in the dependent state I was in 4 years ago?

What if there is a progression of damage to my nerve and this is the start of a decline in daily function that I don't recover from.

What if there's no explanation for the new symptoms and no answers to process? 

What if my work to be respected in my job is now affected by those who would easily take this as an opportunity to point out why I don't deserve to be where I have worked so freaking hard to be?

You see, when you live with pain on a daily basis. The moment when it changes or increases is a scary thing. It is all those questions I listed above that makes the call to your compassionate Dr, the even more scarier thing to do.

So here I sit. Afraid of the pain becoming a focus in my life again and more afraid that my delayed decision to seek help has put me in a position where that will happen in any case. 

Here's to wishing all the warriors a day where the elephant is kind, or at least doesn't use its tusks to maim.

Believe me..... no really, BELIEVE ME

It's been months since I have written anything but I know if I don't write this down now I will most probably end up crying myself into a flare.
In the first 4 months of this year, I have been trying to take a different approach to my life. I have tried to focus as much as possible on my family, my work, my passions. I have tried to ignore the increasing pain frequency and intensity over time. Even on the bad days, and there have been many, even on the frustrating Dr appointment days, the days where I am stressed about the cost of medication, the days when I am heartbroken at missing out on spending time with loved ones....yes even on those days I have tried to work with my TN instead of fighting against it.

Now I am tired. I am so incredibly sick and tired of it all. I have been tired for a while, but that proverbial last straw made its appearance today in the form of communication with one of the doctors I have seen recently. I am surprised, to be honest, at how much this has affected me, since it's not the first time it's happened in

the past 3 years, but it hurts like hell to basically be told that you are lying about your symptoms. It cuts like a knife to be told that your scans do not show how you could be experiencing pain that feels like a knife being stuck into your ear and jaw at random on a daily basis. It crushes the soul to be told that the crushing bone pain you say you feel can't be so, even though there is a valid and proven bone-related diagnosis. It truly is a slap in the face to be told that the lack of red flags on a scan mean that your symptoms of pain in your face are not real.

I still have two, out of the many, doctors who believe me. One is possibly willing to repeat the surgery she did last year in a effort to provide a little more temporary relief....I know that I should be focusing on that right now. Seriously though, the psychological and emotional pain of the reality that is the medical professions' disbelief of those like me, is quite honestly overwhelming every time you experience it.

Today that elephant is at least a ton heavier, I hope that one day soon it will lift itself just slightly and give me a freaking break.

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

Taking it as it comes

It's new years eve and as always, I have been reading messages, statuses and tweets all day about how awesome 2016 is going to be. I am not a pessimist,  but I am definitely  a realist. This means that if I am to be honest with myself, I will say it's been quite a hard year. In fact, if I am really honest, it's been a difficult year every year for a while now. Yes, there have been good times, successes and happy moments, but in reality, they have been in spite of all the other crap. Some may say I am too negative. That just by thinking this way, I am being ungrateful. I beg to differ, and since it is my life, I have a right to.

So what does this have to do with TN? Well, everything, actually.  If I wasn't a realist, I don't think I could have survived the journey that TN has taken me on thus far. I don't think I would have been able to avoid the depression that often comes with chronic pain, go to work when my pain levels were bearable or be the wife and mother that I am. If I didn't take things as they come, use my low pain moments to accomplish  things I couldn't the rest of the time, I would be in bed permanently,  in a mental health clinic, or dead. That, my friends, is the truth. I had to be realistic this year about what I could and couldn't  do.... even if it was something  as simple as opening the door on a breezy day. It is truly, in my opinion, the only way to live with TN.

So for 2016, I am not going to post a status that says it is MY year, I won't be telling the world that I will conquer it.... I will take each day as it comes. TN has taught  me that, if nothing else, and for that, I am grateful.

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

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

Out of control

Generally, we all like to have some control over our lives. One thing that TN doesn't allow me to have, just like any other illness, is to have control over how I feel physically. It doesn't allow me to have control over how severe an attack is, though I can try to avoid triggers, I still can't decide when I'll have an attack and when not.

I do not have control over how I will feel in the morning, even if I did go to sleep with low pain levels. I do not have control over how much pain I will have by the time I get to work, even if I was able to wash, brush my teeth and get dressed without attacks. 

I think you get my drift.

Having a diagnosis of a progressive condition, one without a curative treatment, means that I have had to learn that there is a lot that I can no longer control. I have no control over how much it has progressed in the last 5 months.
It has been, and continues to be, a very difficult thing to deal with. As a result, I have found that I try to hold onto as much control as possible in areas of my life where I still have it. Certain aspects of work, being able to choose not to take medication that isn't working, selecting a procedure after I have researched it and discussed it at length with the specialists.... these are all things that I have control over. 

In a way, this is why it is so irritating and at times, infuriating, for someone to say something like, "but you were fine yesterday/earlier." It is extremely frustrating to have simple things that I should and can still do, being taken away from me because others feel that they are either more capable or are fed up with waiting for me to deliver on a promise where in the past I would have done it much quicker. I am not saying that I still expect to, or want to do everything I could before. I am however, finding that I am asking those in my life more and more to at least talk to me about their ideas of issues that affect me. To take away my decision making ability when I still have it, is by far, the most hurtful thing that has happened since my diagnosis and the progression of this disease. 

So, for those, who like me, are struggling to hold on to the seemingly simple matters in life.....carry on. Keep that control, even if your body has decided to take so much away from you. For those who have to live with, and interact with us, remember, this physical condition, though it has its' psychological effects, does not take away my ability to think and reason as I did before. I can still have a reasonable, logical conversation with you (assuming I am able to talk on that day) or email discussion. My disease might reside in my head, physically, but it has not taken full control of it and/or its' contents.

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

Randomly musing and missing being part of your life

A good friend recently said something to me that makes perfect sense, but yet, is something I have struggled to accept since becoming ill. People generally stay away from someone with an invisible illness, not because they don't care, but because they feel helpless to help the person they care about.

This makes sense. I know it does. On a purely logical level, I do understand. This is something that I have heard so many in the support groups cry and vent about. Family members who no longer invite you to gatherings, friends who don't invite your kids out to play with theirs, friends/family who no longer visit.

It is so extremely difficult to deal with. I have always been a home-body. Not necessarily someone to go out and party. What I have always done though, is enjoy spending time just being with family and close friends. I miss that. I have had to adjust to being a hermit for most of the week with a maximum of 2 days out of the week where I have to be in the office. Even that has become difficult, with more sick leave these days than before.

I have had colleagues, friends and family all say the words "I wish there was something I could do" to me recently. I do too. I wish there was something I could tell you to do. I wish I knew what would help. BUT, because I don't know what will work, and neither do the very qualified, highly specialised doctors, I do not have a straight answer to that statement. What I do know though, is that 'something' you may wish to do for the chronic pain warrior in your life, is just to be there. Coming to visit, even if it's just sitting and watching tv with me would be awesome. Sending a short message just to say hi, making sure meetings are not unnecessarily long.....those are 'somethings' in my book.

I have slowly, but very surely, felt my friends pull away. Colleagues and friends may be frustrated at my limitations, and I understand that. Just imagine how frustrated I am? How frustrated I am to have to plan my day to make sure that I do not have to brush my teeth too close to having to be in a moving vehicle because the combination would cause too much pain? Imagine how frustrated I am to have to avoid work gatherings that are in a place with too many windows/air conditioning/outside?
I know it must be irritating at times for you too. Irritating to have to hear about my pain all the time. Just imagine how irritating it must be to have absolutely no control over how much pain I may be in, over when an attack will hit.

Think of it this way, if someone had to break their arm today. Would you give them all the manual labour that needs to be done around the office/in the home? Would you tell them to get over it, pray the fracture away, deal with it because it isn't a terminal illness? Tell them to stop wearing a cast/sling to show everyone that their arm was broken? Would you stop being their friend for something that they did not have control over? I have heard statements to my face and behind my back, all to this effect. I don't expect pity, I don't expect my friends and family to be constantly asking me if I'm in pain (I always am). What I do ask for, and I am sure others with TN ask for the same, is for you just to be there. Just understand that this is scary for me too. I feel helpless and without any hope most days, and it would be awesome if you you said the same to me too, because then we could figure it out together.  For now though, unless I make the effort to contact many friends/extended family members, I have had to accept that their absence from my life is something I will have to live with. I just sincerely hope that it is because they don't know how to not be able to fix me. I don't want to think of the alternative, because that is a whole other post. A post about those who no longer want to be in your life because you can no longer help/do for them what you did before.....


To my fellow TN warriors, may the elephant on your face be gentle today, if not, may he go to sleep really, really soon.

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

Dear Dr X - an open letter to health professionals dealing with chronic pain

Dear Doctor X (insert other health professional as it applies)

Today I feel that I need to let you know what is on my mind. I studied and worked as a health professional and still work in that field, albeit, in education now. So before I say what is on my mind, please know that it is done with respect and a certain level of understanding of your world.

As students, you are taught the physiology and anatomy of a disease. It is impossible for you to know everything about every illness, I know that. You did however, I hope, enter this field to help bring relief to those in pain or poor health. You do this, often under difficult circumstances and with a very tired mind and body. If I may be as bold as to offer you some advice, please let me do so:

1. A patient with a chronic, rare, incurable disease needs understanding. That is a fact and imperative if there is to be any success in treatment. You may not ever truly understand the pain that this person is experiencing, and I sincerely hope you never do. But please try and understand the frustration and despair that they enter your office with.
2. You are intelligent and well educated, but that does not mean that you can assume you know exactly what all the symptoms are of this disease. It does not mean that because you were taught that chronic pain conditions may be psychosomatic, that this case is that. It does not mean that because this patient does not fit into the textbook picture of the disease, that they do not have it. Do me a favour, use the technology available to do a quick search on the research going on out there on the disease. It will help your patient to know that you are interested in finding out how best to help them way more than if you say "I have been practicing for years and have not heard of that symptom," OR "Because you don't respond to the medication decided upon 20 years ago, there is NOTHING else I can prescribe."
3. On the subject of research. Please understand that thanks to technology, many of the patients you see with these conditions, have done a lot of research. Please refrain from being condescending by assuming I am using WebMD and Yahoo Answers to find out information about my illness. I am not an idiot. I am not gullible. I look for scientific studies on a daily basis, hoping that today will be the day that someone has published a new treatment option. I am not alone in this, MOST of us do this. You may find that your patient will come to you with those studies in their bag, but unless you seem open to finding out new scientific information, that research article that was printed out, will walk out the door with the patient.
4. We are, generally, NOT drug seekers. Asking you for a prescription for a medication that has helped in the past, or helped someone else that I have come across with the condition, does not make me a drug seeker. Yes, many of the drugs we can take do have addictive possiblities, but that doesn't mean you have the right to say to me : "No, that is very addictive and WILL NOT help for your pain" and walk away. It is hurtful to hear and adds to the despair. Perhaps you have another treatment option as a suggestion. If not, please read no. 2 in this letter.
5. Your comments about maintaining quality of life to a patient who has had the rug pulled out from under them in a heartbeat is appreciated. Please though, try to understand this. Just because I am still employed or am able to look after my family does not mean that I have the same quality of life that I had or that I believe I deserve. My visits to you and many others in your profession are part of my life. As a result, quality of life for me includes the quality of care I receive from you. If that is not at a high level, if I am not longer able to work with the same efficiency I once did, if my kids have had to grow up way before their time because I am not able to do what I did for them......then I feel that I do not have a good quality of life. So to those in your profession who say " I can't do anything more for you, let's try to maintain your quality of life", please understand exactly what that means.
6. Finally, it is unacceptable, completely and utterly, unacceptable, to expect that you know more than I do about my own symptoms. Symptoms, by definition, is a subjective thing. There are signs of an illness that are objective, but only I can tell you what I am feeling. So please, I am begging you (and I've actually used these words), when I say do not touch my face to 'check my sensation', don't do it. It is excruciating. If I was able to put up with it, I would rather have my daughters kiss me on the cheek....that is worth it. I would rather have my husband stroke my face, but when you decide that you're not sure if what I am telling you about my body, my symptoms is true and you then decide to elicit the exact symptom that I have just described to you as being unbearable, don't act all surprised when I scream, cry and attempt to inflict pain on you with a slap or a kick.

Dr X, I sincerely hope that you take this in the light with which it is written. I appreciate your compassion and care for all your patients, including me. I understand your frustration at not being able to provide a quick fix for me. If you are still around and willing to be my physician even after you're out of ideas and are simply able to manage my care with follow-ups to ensure my records are up to date, I applaud you. Believe me, we go through so many of your colleagues because they simply show us the door when we are too complex for them. 

There is much more I would like to say, and I am sure that I will find the words and courage to do so one day, but for now, Dr X, thank you for your time in reading this. I sincerely hope that if there are other doctors reading it, that they are some of those who DON'T need to read these words and that one day you will also say, 'that used to be me.' Also know that it is my goal to spread awareness about what chronic pain, specifically, Trigeminal Neuralgia does to a person, so I will stand by what I have said here. I will also be working hard to change the minds of the medical insurance companies and my colleagues in the way we educate your future colleagues - So, I am not only targeting you.

Sincerely

Lianne

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

HOPE, No ... Give me TIME

It has been a few days since I wrote anything, and with good reason. I have spent the past few days dealing with pain and disappointment of yet another treatment option not working by trying not to think about it at all, finding distraction where I can. This has me thinking about the word HOPE. I hear it on a daily basis now, " I hope you are feeling better today", "We hope that the new treatment or surgical procedure works", "All you can do is have hope and faith that it will work out."

Early on in the process of trying to find support online from others with Trigeminal Neuralgia, I found out that chronic pain sufferers use the word HOPE as an acronym, Hold On, Pain Ends.

Really? How?

How is this pain going to end? How can this pain end when there is no known cure or long term treatment, yet? When healthcare professionals question our symptoms? When we are treated as drug seekers just because we go from one doctor to the next to try and get relief? When trying to find help requires time and finances that we don't have anymore?

How am I supposed to be positive in the way I think about how my life has changed when those changes have forced me to give up on dreams and aspirations for my career, friendships and relationships? How can I hold onto HOPE when I keep on being shown the door as yet another surgeon or specialist says, ' sorry, there's nothing else I can do?'

Every time I have asked myself these questions in the last week, I think about something I heard. A short while ago, I watched an episode of "Grey's Anatomy" in which one of the characters has been diagnosed with a supposed inoperable brain tumor. Now I know that the medicine on the show is not exactly science and don't watch it for that, but rather as a show I really love. What hit home in the episode was a monologue by that character after being told that a colleague felt that she could successfully remove the tumor: "Can you name the single worst most malignant symptom of terminal cancer? It's hope. It's recurrent, and it keeps creeping back in no matter how many times it gets ripped apart … And every time the hope goes, it takes chunks of you with it, until you can only find comfort in the one thing that you know you can count on: that this thing is going to kill you."

Please DO NOT think that I am equating Trigeminal Neuralgia to terminal cancer.  The point I am trying to make is that HOPE, for me, is like that. It's the worst possible thing I could have right now. 

Do you know why? 

I have spent thousands of Rands seeing specialists, taking medication, having tests, having two surgicial procedures in the past year. With each Rand spent, with each doctors visit, with each test or procedure or new medication prescribed....do you know what came with that? Yes, HOPE. Now, after both surgical procedures have failed to relieve my symptoms, even for a single day, I can tell you that I do not have HOPE. I cannot Hold On until this Pain Ends. If I did, I would probably allow myself to sink into a serious state of depression that would allow me to reach the point of submission to my pain and ignore my guilt about wanting to end it all. If I continue to hold on to the HOPE that the post-op visit to the surgeon tomorrow will bring me anything more than a " well, I told you there was a chance it wouldn't work" coming from across the table...then I am an idiot. I would be an idiot to think that being HOPEful that this pain will end is going to be around the corner.

So now what? How can I get up every day and go about my life? Well, I don't know. I don't know how I get up and how I will go back to work next week. I don't know how I will find the strength to make it through the next bad attack. What I do know is, I'm still here. Even if the rest of the world (i.e. my friends/acquaintances/colleagues) has become tired of me sharing my story, of raising awareness, of 'complaining' about my pain....my family is still here. We have adjusted to a different way of living. We are pushing through the difficult times and emotions this causes for our daughters and for our marriage. I'm still here. I don't know how, but I am. 

One day, I know, I will again find the courage to fight and look for another option in my treatment. Today though, that is not going to happen. I need time to adjust to this new level of pain. I need time to deal with the fact that my HOPES have been shattered yet again. 

So with this I say, give me time. This Is Momentarily Excruciating, but those moments are coming in thick and fast right now. So give me TIME to deal with it. I may not respond to messages or calls, because it is hard for me to respond to a "how are you" with an " I'm fine/ok".  I just need 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

May the guilt be with you

I saved this post and was ready to publish when I realised I should start with a disclaimer: I am not suicidal. I am not going to harm myself or others. I am safe, I am loved, I am in pain - but it's a pain I know and am dealing with. 

Now for the actual post:

There have been moments in my journey with TN where I have felt like I wanted to throw in the towel. Moments where I knew that I was teetering on the edge of joining the statistics that have resulted in TN being dubbed the suicide disease.

Those moments have been interwoven with an undeniable, excruciating sense of guilt. There is a guilt that comes with living through something that others don't understand or can't see. Feeling guilty because you're no longer functioning at the same level you did previously. No matter how illogical it seems or how much psychotherapy you go through, this guilt is there and is difficult to ignore.

The guilt at those moments of despair is different. Its guilt that eats at you for letting your supporters down. A feeling of guilt for being weak and not being able to push through. A feeling of guilt because you know there is going to be someone saying or thinking that "this isn't going to kill you" so you should be grateful and not desperate for a way out. Guilty feelings that fester because, surely you should have been able to push through this for your spouse, your kids, your loved ones, because it's selfish to think otherwise. Guilty feelings exacerbated by the constant advice about the healing that will come through prayer or exercise or lemon water (or any other natural remedy). Guilty feelings raised up on you because you should be thankful for the advice as it shows care and support from those who offer it.

Yes, the guilt that lurks daily is exponentially greater at those low moments. Sometimes, scarily, the guilt is all encompassing. Those moments when the pain is suffocating and the feelings of guilt are low, are the really scary ones.  More importantly though, in those really scary moments, I am grateful for my husband. His support and offer of a shoulder to cry on, an arm I can dig my nails into, or 'borrowing' me a spoon to at least shower, is invaluable. I can honestly say that without that support, without him helping me fight the demon, I would find it more difficult to embrace that guilt as a means of helping me keep it together to make it through the extreme pain.

I hope today that all those living with chronic pain, especially TN, have some guilt to keep them going. If you're lucky enough to have moved past that feeling of guilt, my wish for you is that you never feel it again or at least never have to rely on it to get you through a dark moment.

May the elephant on your face sleep tonight.

  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

Fact or fiction?

I often struggle with the dilemma of sharing my personal journey versus sharing facts. Facts are good, they inform others in a way that promotes awareness and can be seen as educational. Feelings/personal journey are useful for trying to create an understanding of what it means to be living with TN but can be seen as complaining or negativity. I know I have "lost" friends who are "tired" of my social media posts or the way in which I have changed....but I will continue to share as I know that those people were never true friends to begin with. I do think though that I have neglected to personally share facts about living with TN, though I have posted on social media various links and posters to share the information, here are some of the facts I have discovered through research (actual scientific studies and not yahoo answer websites), personal experience and the sharing through support groups I've been lucky enough to find on line.

1. Trigeminal Neuralgia (TN) is a chronic, progressive condition in which the person experiences severe facial pain. The pain is most often triggered by light touch, vibration or a breeze on the face.
2. TN is generally classified in two distinct groups, TN 1 = sharp, electric shock pain that comes and goes. This pain can last seconds or minutes with some people experiencing up to 100 attacks per day. TN 2 = also known as Atypical Trigeminal Neuralgia is almost always a constant, deep, burning pain that "flares" in intensity but almost never goes away. 
3. The literature says that TN is generally a condition that affects those with an average age of 50 or older - The support groups tell a different story with the majority being in the 20-40 range. This year the international awareness day for TN is aimed at raising awareness of the children and teens with TN, that should say enough about how outdated the stats are.
4. Those with TN have to go through a long process to receive a diagnosis, often having teeth extracted and diagnosed with migraines or Temporal-Mandibular Joint pain before finding a diagnosis. There are very few of us who have this diagnosis who have not been ignored, called liars/drug seekers/hypochondriacs in the process. The health care system, regardless of country, is not equipped sufficiently to deal with conditions without clear, curative, protocols for treatment, that is a very sad, very true, fact.
5. Treatment usually begins with anti-seizure medication (Tegretol is the first line of treatment for most) through a trial and error approach for finding the dosage and type of medication that provides the most relief. If and when it is not enough, certain anti-depressant medications are added as they are often used in nerve pain conditions. Narcotics may or may not be added for pain relief but does not work on its' own for most of us. Surgical options are Micro-vascular decompression (where surgical Teflon padding or a similar material is placed between the nerve and any blood vessels causing the pain), Steriotatic Radiosurgery (concentrated, directed radiation to damage the nerve), Glycerol rhizotomy (a glycerol solution injected into the nerve ganglion to damage the nerve), Balloon compression (a procedure where compression of the ganglion of the nerve for destructive purposes is done).
6. None of the treatments can guarantee 100% pain relief or relief that is lasting. 
7. Trigeminal Neuralgia has no cure; it varies in intensity for each person; it is real; it is debilitating; it is not fully understood by MANY health care professionals; it requires research to enable those who are able to help, to know what to do.
8. People with TN have and do lose their jobs as a result of the pain and or side-effects caused my medication. We are almost ALL dealing with family, friends or colleagues who choose not to accept that the pain is real or that it is affecting every aspect of our lives and as a result lose those friendships or support in the workplace. It's a difficult disability to defend in applications for disability cover due to the lack of knowledge and understanding regarding the true impact on functioning.
9. We are determined to find a cure and raise awareness, this is evident in the efforts by many to work on various events for 7 October, the international awareness day for TN.

Finally.... 10. we miss our lives that we once had. Once the progression has reached a point where no remission is in sight, we miss our work, our family events, our exercise opportunities, our simple pleasures such as taking a walk without fear of a breeze knocking us to the ground.

For those interested in more information, visit The Facial Pain Association website. This website provides updated research and support links. For those who are looking for support on Facebook, a good place to start is End Trigeminal Neuralgia a page with detailed information and testimonials regarding treatment.

  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

Life Changes

Life changes. Technically I could leave the post at just those two words and I would be making my point. However, as this is a blog and not Twitter/Facebook, I should probably elaborate.

Right now I'm sitting somewhere where sat a year ago and the year before that and the year before that. I am sitting at a Fellowship programme that I am privileged to be a part of.

Now, before you ask....but what are you doing at a conference when you just had surgery last week, it can't be that bad then, right? Well, let me explain.

This programme is directed towards improving the health professions education arena in Sub-Saharan Africa. It is a programme of like-minded health professionals who are all passionate about creating a group of educators who strive to ensure that healthcare on the continent is improved by improving the education of those who will one day provide said healthcare. The organising and facilitating group, of which I am blessed to be called a part of, are my friends, close colleagues and for some of them, my career mentors. They understand what I'm going through (to a degree) and support me by allowing me to find the joy I need in participating, albeit minimally, this year while also resting when needed.

With that explanation out of the way, let me tell you why I am so taken aback by how much life changes.

As little as 1 year ago, I was here, and loved it. I was energised. I was excited and excitable. I was driven by my passion for the cause as well as my passion for my work. I love(d) my job. I love(d) the opportunities I was presented with to help others see their potential. I was busy working on my PhD proposal, managing work matters in the evenings, calling my family at home while missing them like crazy, taking walks in the evening when the sessions for the day were done and visiting with friends.

This year, I'm recovering from surgery, though the majority of the surgery pain has gone. I am in pain, my "normal" pain, but pain nonetheless. I am tired. I participate where I can, sleep when I need to and run out of the room when I have an attack. I can't handle the 1866 emails in my work inbox and can barely handle the whatsapp messages when they come through. I struggled to walk up and down the stairs today when the vibration of my steps once again caused attacks. Even if I had a car here, I can't drive, I haven't been able to in almost 1 year. This year, I am glad to be here, just to give my family a break. I needed to give them a break from me, and that breaks my heart. I'm glad to be here to get some of the passion and energy I need, even if it's in short bursts. I am happy to be here where I am still able to say - Screw you, TN, you can't take this away from me too.

I know when I leave here next week, it will be to another doctors' appointment where they will discuss the plans to give me glycerol injections into my skull to provide temporary pain relief. I also know that it will not be the last visit or the last option they present me with.

I can't look forward to going out to a park for the last of the summer with my girls, because it's too windy and even my scarf isn't enough protection against the pain of the wind most days, anymore. I can't look forward to getting back to work because most weeks, I am only able to cope for 1 full day at work. I am slowly, but surely, running out of spoons because I'm using up, not just the ones I need for tomorrow, but those for next week, next month, etc. etc.

So yes, I could have just said, Life Changes.
But really, could it have meant what I just said?

Life changes, enjoy every single pleasure, fear, joy, hope, sadness, excitement - filled moment. One day it may change for good.

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