The Sleeping Giant

I was diagnosed with GPA almost 9 months ago. At the beginning of this past month, my doctor wrote the word  in my medical file that every GPA patient wants to see : 'Remission'. It has been a long and exhausting journey to see that one word. The drugs, the side effects, the complete and utter exhaustion, scopes, scans, uncountable x-rays and blood tests and the challenges of living every day with a compromised immune system have made for a unique journey, the kind that I never thought would be mine.

I have never been the kind of person that lives in half measures, and it is exhausting to have to constantly remind myself to slow down. Truly I am only on the road to what is medically considered real remission, which would mean that I would have to be symptom free, and be off all of the drugs that I am currently on. However, knowing that I am on the way there helps me to have hope, and to force myself to stop and rest, when before having GPA I would have pushed myself to carry on going.

Each day that I am able to get out and run, I have hope. It feels like life again, albeit slightly slower than before. I run for those who cannot, and for the years that perhaps I may not be able to, because I  had honestly taken the simple joys of life for granted before and now I am reminded every day that forever may not be as long as we think. I may never win another race, but I will certainly try.

I realise that the battle that I fight has a name, and I am thankful that I know it's name, and that although doctors don't know what causes it, nor is there a cure for it, at least I know what I am fighting. It is now sleeping, with the help of the drugs and the many prayers, and by the grace of God. However, many people that struggle with an autoimmune disease struggle for years to get a diagnosis. The disease can be put to sleep (remission) for a time for many people, but for many the damage that is done on the long road to diagnosis is unrepairable. My GPA moved fast, and violently, and although I nearly died, I am thankful that it presented itself the way that it did, because it forced the doctors to keep looking desperately for a diagnosis.

And while I continue to walk this unsteady road to drug free remission over the coming months, I dare not live my life loudly, but have quite enjoyed the process of learning to live slowly for the first time. A life in which I really see and hear many things for the first time -it is truly a gift that not all of us are given. To have something that forces us to realise that our tomorrows may be numbered, and to make the best of each and every one of them - a gift, wrapped in a rather unlikely disguise. There are many days that I would like to exchange my gift, but I have also come to realise that everyone is fighting a battle - and perhaps I overlooked the struggles of those around me before I really had any genuine struggles of my own.  To have one's own struggles in order to really see the struggles of others, and to live in human brokenness in some form or another so that that you can truly understand and appreciate the hardships that some people have to encounter - that is the gift that leads you to the road to true empathy.

So here's to remission - to the putting to sleep of the giant that is GPA. May he never rouse again - but if he does, I sure am glad that I know his name, and am armed with a doctor who has a good idea how to fight him to sleep again.


Sleeping Giant

There's a sleeping giant inside me
I dare not to rouse him
Life is a tiptoe, a quiet dance around him.

There's a sleeping giant inside me
Sometimes he stirs
But yet, he doesn't wake, and I am free again.

Free to wonder when or if the giant will ever wake.
Will he ever show his head again,
Or will his slumber leave me in peace?

Life is for living they said.
The warning is clear
Don't live too loudly, or the giant may wake.

I have only met my giant once.
He tried to kill me.
I know his name now, and fought him to sleep.

Nobody knows where he came from or why.
But now he is a part of me.
Sleeping quietly for now, hopefully never to wake again.

Life is for living they said.
Who knows how much time you have?
You cannot be afraid of the giant - you must live.

But here I am tiptoeing around him.
Playing gently so that I can still play.
My soul shouts 'live', but my spirit whispers 'quietly'.

Live quietly. Not in fear of the unknown.
For I know his name. He is known, and I do not fear him.
But if I live quietly, I know I can live.

Living quietly, laughing loudly.
Slowly. Listening. Looking. Really seeing for the first time.
The giant gave me this.

He tried to kill me.
But also, he gave me life.
Quiet life. Real life. Treasured moments that could be my last.

For the gift that he gave me,
To treasure each moment
I will be thankful, even if we never meet again.

Oh sleeping giant.
Thank you for your gift.
Now, sleep, sleep deeply. Do not rouse. Let me live the quiet life.

Life is worth living

Life is something that I once lived at a million miles an hour.  As I ran through each day attempting to complete as many tasks as possible in the 24 hours that I was given, I hardly ever saw the flowers, let alone stopped to smell them. And they were there of course, the flowers, in the morning with dew drops sparkling in the sun, attempting to grasp my attention that I would stop the mad rush that was my life and take in their beauty, if only for a minute. The birds were in the trees, softly chirping each day, waiting to lift my spirit, to say good morning, but yet my mind was so rushed with the details of the day that I did not hear them. The rain that falls daily for months in Thailand was but an annoyance, a hindrance to the things that needed to be done, rather than a refreshing break from the rat race. It should have been a reminder that life is not about how much we can accomplish in the shortest amount of time, but rather a journey that we continue every day - one with birds and flowers and refreshing rainfall that are waiting to speak to our souls. 

In the rush we do not see, we do not smell, we do not comprehend the beauty of the world around us – the beauty that whispers to our soul. True beauty does not shout, it whispers to our soul, and to hear it our soul must stop and be still. The rain may bring the rainbow, but we will not hear the promises that it has for us if we do not go outside to see it. Not just to look at it, but to truly see its beauty: the kind that cannot be captured by a photograph, the kind that cannot be shared online. The kind of beauty that is whispered by a rainbow and a sunset must be experienced by one’s soul – and we cannot do that from behind the screens of our computers, or with our minds full of to-do lists. We cannot appreciate the beauty of life from the traffic jams of the highways of busyness. Sometimes, we must be forced to stop so that we don’t trample on the roses that have been placed there for us to smell.

The question when we discover this secret, the secret of the whispering that does not shout loud enough to drown out the playlist that we have playing on our headphones, is once we discover that the roses are there, once we have stopped to smell them, and seen the beauty of the sunlight reflecting off of the morning dew, how do we reprogram ourselves so that we live our lives to become constantly aware of the whispering, rather than being rescued occasionally from the rat-race by it? How do we teach our children that life is for living, for setting our souls on fire with the hidden beauty that has been created especially for each one of us to experience? How do we show them in this age of eyes constantly on smartphones, that sometimes the beauty that someone else needs is as simple as a smile from a stranger on their commute home from a difficult day in the office? That in fact, they are the beauty that someone else may need at this very moment. How do we help them to understand that the life that we live on social media is not in fact real life, and that real life is the one that we experience with our senses? Real life is the one where the beauty that God has created for us makes us feel free, despite all of the expectations that others have of us, or in fact that we have for ourselves.

These revelations do not come cheaply. For some of us, we must be forced to stop and look. For me, stopping did not come voluntarily. A near death experience, a rare disease diagnosis, a month long hospital stay – a much needed reality check for someone who thought they were already living life to the full. Six months later, it is the difficult days, the ones that I can barely get out of bed that bless me the most. It is those days when I can hear and see and smell and touch the beauty that God has for me the most. On the days that I am strong, which are increasingly frequent these days, I am tempted to forget the lessons that I have learnt through the struggle. I put in my earphones with my playlist and work through my to-do list. I forget to listen for the birds in the morning and run to finish my workout and carry on my day rather than to see the morning sun on the wildflowers and rice fields. It is on my weak days, the ones where I take a slow walk with my daughter to the park to hear her laugh as I push her on the swing, that I am reminded that fast is not always better. More is often less. Strong, in fact, is my weakness.

So the question, how can I teach my children the lessons that I have learnt, and how do I continue to walk in them as I get stronger? It is a journey, but it must be lived. It must be modelled. It is not something that can be taught, it must be seen, experienced.  We must discover it for ourselves, and we must determine not to lose the insight that we gain. And, when we do lose sight of life’s beauty, which we inevitably will at times, we must learn to quiet our souls and hear life’s beauty whispering to us through the quiet still breeze across the ocean. Life is worth living. Life is worth living and it is beautiful- but it will not shout to get our attention. The whispers are everywhere if only we will stop for long enough to listen to them. 
                                

International Rare Diseases Day

In my almost 8 years of being a parent, I have always been pretty relaxed about childhood illnesses and injuries. Sniffles and stomachaches and chicken pox are all a part of being a kid. Most kids get at least one set of stitches at some point, and maybe a broken limb or some torn ligaments. My most recent trip to the Emergency Room involved my daughter having to have her tongue stitched up after she went down the slide at the playground a little too fast and bit her tongue as she reached the bottom. My kids are accident prone, but also pretty brave. The doctor wanted to put my daughter under general anesthetic to stitch her tongue but she was having none of it and was sure she could lie still while he stitched it up for her in the ER. She was right, she sat still, got stitched up and was still able to be Snow White in her schools kindergarten production the following week.

Both of my kids are pretty similar when it comes to these things and I was the same as a kid. I tore the ligaments in my ankle in primary school trying to prove to myself that I could jump down an entire flight of stairs. I was on crutches for a couple of weeks, but I remember being pretty proud of myself that I had made it all the way to the bottom step from the top. My sons soccer coach tells me that he has the ideal personality to be a goalie because he doesn't think about getting hurt and just throws himself around the goal without much consideration of what could happen to him. 

However, in September when I discovered that I have Granulomatosis with polyangiitis (GPA), every childhood sniffle and ache was suddenly not just a sniffle or an ache. I am so thankful that I only developed GPA as an adult but I have seen children as young as my own receiving chemotherapy at the same time as me for similar diseases to mine. I cannot imagine what it must be like as an 8 year old to have to live through what I am living through. As a mom, I take every complaint seriously now. I know that not everything is serious and that most things will never develop into much more than a sniffle, but now that my eyes have been opened to the world of rare diseases I can't help but collect every health complaint that my kids have somewhere in my memory in case one day it is a piece of information that could save their lives. 

The 29th of February 2016 is International Rare Diseases Day. If you had told me that a year ago it wouldn't have meant much to me. I'm pretty sure I couldn't even have named one rare disease. There are over 6,000 rare diseases that are known about, and many of them affect young children. Rare diseases need very special doctors - not doctors that think they are knowledgeable, but doctors that are willing to say 'I don't know'. I had a very special team of doctors that helped with my diagnosis, and one of the reasons why I was diagnosed in time was because many of them, highly qualified and experienced specialists in their own field had to say day after day, 'I don't know'. They were humble and willing to admit that they didn't know what was wrong with me and couldn't treat me, but referred me on to someone else who could. My rheumatologist is the doctor that diagnosed me, and I am the only patient that she has ever met with GPA. I list my symptoms for her every time I see her and together we have to try and figure out whether they are related to my disease or not. When she started treating me, she brought her iPad into the ICU and explained the course of treatment by showing my family and I articles from the Vasculitis foundation in the UK. I am a case study of the resident pulmonologist and another one of the doctors who is currently studying to complete his specialization in rheumatology. 

Do you know someone with a rare disease? Do you have a healthy child that, like my two children, doesn't have to worry much about sniffles and chicken pox because they are just a normal part of childhood? This 29th of February, why not participate in helping to raise awareness in some small way? Rare Diseases South Africa runs a project called the 'rare bear project'. You can purchase a bear for a child who has a rare disease in South Africa and it will get delivered to them. So even if you don't personally know someone with a rare disease you can touch the life of a child who may be fighting a very difficult fight.

In South Africa you can have your school participate in the coloring contest to support rare diseases. Find out how you can get involved in your community to help raise awareness -http://www.rarediseaseday.org/.

Do you know someone that aspires to be a doctor one day? Encourage them to be the kind of doctor that is willing to say, 'I don't know but lets find out together'. We could all use more doctors like mine in the medical field - one day you too may need a special doctor to stand by your side and learn together with you.

To all the kids with rare diseases who aspire to be Snow Whites and soccer goalies but can't because of the limits of their disease - never give up dreaming, and may you too find your special doctor who believes in you and fights your disease together with you. And to the parents - be brave and never give up hope.

Steroids,chemotherapy and living life with GPA

These two pictures of me were taken on the 12th of August - Mother's Day in Thailand. It was probably a few days before I first started having the first of my strange symptoms - unbearable pain under my feet that came and went for a few days. At the sign of the first symptom, I presumed that it had something to do with the kind of shoes I was wearing, and possibly the amount of running that I was doing, as I was training for a 10km race that I was hoping to do well in. I went to a doctor and his diagnoses seemed to be in agreement with my thoughts. Honestly, who could ever have known that it was anything more than that?

Two days later when I started having pain in my other joints, I started to question whether it was something more, and took to Google trying to find every possible diagnoses so that when I went back to the doctor at least I would be armed with some more information. Google is a dangerous place for people exhibiting strange symptoms. You could go from a healthy individual to someone who is convinced that they are dying in a matter of minutes. I however, had no idea that what I did have actually was much more serious than what any of the symptoms were showing at that point and now that I know that I have GPA (Granulomatosis with polyangiitis or Wegener's Disease), I sure am thankful for all the information that I can find on the internet that most of the doctors here cannot tell me, because they have never actually met anyone with GPA. When I was being seen by seven different specialists at a private hospital and none of them had any idea what was wrong with me, I have to say that it was a very scary position to be in. To be told that the hospital can no longer treat you because they have no idea what is wrong with you, and you need to be transferred elsewhere is pretty frightening. 

Through numerous miracles in the span of 48 hours, I had a diagnoses, and a doctor in my very own town who could treat me. She is the only Rheumatologist in the entire town and had just been transferred from the best government hospital in Bangkok six weeks prior to my illness. My blood tests that had been sent off to Bangkok a few days earlier came back just in time, and the doctor returned to work from a seminar that she had been attending in India the same morning as the blood results came in. At this point I was already on a ventilator and a feeding tube, receiving numerous blood transfusions and my lungs were getting worse by the minute. Once the diagnoses was made, the doctors started plasmaphesresis, substituting the plasma in my blood to rid my body of some of the antibodies that had turned on my own body and were attacking it. They did this for five days in a row. I was already on steroids, but my dose was increased significantly, and once I was off of the ventilator, I was informed that I would start Chemotherapy and that it would begin the next day.

The thing about having a disease like GPA, is that when it progresses so quickly, you don't really get to think about any of the treatment before it begins. It's not like you really have a choice in the matter - the honest truth most of the time is have the treatment and you live, don't have the treatment and you may not be around for very much longer. When I was first put on the ventilator, the nurses and doctor asked me a number of times whether I wanted to have a ventilator put in. I was watching my oxygen numbers drop rapidly, knowing that I couldn't breath and was only getting worse, but at that point I just needed someone to make the decision for me. These are the kinds of situations you never think about and being asked whether it was something I wanted or not was very difficult when I felt so uninformed and powerless. If the doctors hadn't made the decision for me, I am pretty sure I wouldn't have made it until the next morning.

I have learnt through all this then that sometimes it is better to be uninformed when treatment like this begins. While I knew what both steroids and chemotherapy were, I didn't know enough about them to know what the side effects would be like. Had I known, perhaps I would have hesitated to allow the doctor to give me both - even though I need them to treat the disease. Most people that I have met online that have GPA hate being on steroids, but I would say that almost everyone says the same thing - they hate the side effects and wish they could get off the drug,  but they are happy that they are still alive.

So here is some of what life is like on steroids, and chemotherapy - which is what life with GPA looks like for me right now. I was started on a very high dosage of Prednisone (steroids) when I was in the hospital. By the time I left the hospital I was taking 50mg of steroids daily which I presume was less than what the doctor started me on, but I can't say for sure. The side effects were nothing that I ever could have imagined. I had been told by the doctor that I may get a 'moon face', one of the side effects of prednisone, but she didn't tell me that I would be hungry constantly, not able to sleep for longer than 45 minutes at a time, constantly sweating, having heart pulpitations, grow a weird fat deposit on the back of my neck, and find it very difficult to control my temper. There are risks of osteoporosis, damage to my teeth, developing diabetes and high blood pressure and going into early menopause - but I won't know until I have been on the drug long enough for it to affect me in any of those ways.

Definitely the hardest two side effects to deal with have for now have been the sleeplessness and the moon face. I am not and have never been someone who cares that much about my appearance, but it was so odd to watch my face changing before my eyes in the mirror each day. People immediately started to comment on my face every time I left the house. I decided that it would be interesting to take a picture every couple of days and put them together to compare them. This is the progression in around 6 weeks, from just before being released from the hospital when I had already been on Prednisone for a number of days, to now when I have been on it for more than a month and a half. Admittedly, I don't look bad and probably look healthier with some cheeks anyway, as I have always had a very long, thin face. But watching my face change so fast has been quite surreal.

I have already had my prednisone dose reduced a number of times during this 6 week period and am pleased to hear that most people lose the moon face after their dose gets lower than a certain amount. I am looking forward to that day, when I can sleep at night without waking up in a puddle of sweat every few hours, and I can leave the house without people commenting on my suddenly very round facial features. But for now, I am like many other people with GPA, happy that the prednisone is keeping me mostly symptom free and that I am alive, breathing with my own lungs and walking pain free on my own legs for the most part.

Chemotherapy for me was more of a psychological hurdle than a physical one. The physical side effects are there, but I think there is a certain stigma about receiving chemo that makes one want to think twice before agreeing to the treatment. Again, I was thankful that my doctor didn't give me a choice. There was no time to think about whether I would or wouldn't have the treatment, or whether there was even an option not to have it. I didn't ask too much about the side effects, if the doctor thought that it would keep me alive and put me into remission, I was happy to go along with pretty much anything she suggested. I had just come off a few days on a ventilator and was finally breathing on my own, anything that the doctor thought would keep me breathing without help from pipes and machines seemed like a good option at that point.
I was told in the morning that I would have the treatment and had my first treatment that afternoon. It was only when I was having the treatment that I began thinking about the side effects that I may have. Would I feel sick? Would I lose my hair? Would I one day get cancer from the chemicals that were being injected into my body? I don't know the answer to any of these questions, but again, I can say that I am happy that the drugs are helping to keep me alive. I may still lose my hair and the chemicals may affect my body one day in the future in a serious way, but for now I am alive and getting better, and for that I am grateful.

At my last check up with the doctor, she was amazed at both my blood results and my lung x-ray. I am walking a journey of faith and believe that God is healing my body every day. I honestly don't know how much of a role all the medicine has had to play in the healing process, but I do know that every day I get up and try to do all that I can to follow God's leading in how much I take on. Six weeks ago with the state of my lungs, I was pretty sure that I would never run again, which was devastating to me having been a runner all my life. I have been walking every day, and praying that my lungs would recover completely. When the doctor looked at my x-ray last week, her words were: 'Your lung x-ray looks like a normal person's lungs'. She then gave me the go-ahead to run or swim as I feel able. Between chemo treatments, I feel well enough to exercise most days and I am pain free the majority of the time. This is a journey that I take slowly and with caution, but the joy in being able to do something that you really love and thought you would never do again is an experience in and of itself that I feel privileged to have had.

So what does life look like with GPA - some days I am tired, other days I feel fine. It is still strange to think that I live with a chronic illness and to be aware of the fact that my body is fighting a battle against itself. It feels bizarre to know that I have a disease that most people have never heard of, and that just a few weeks ago, I myself had never heard of. It is frightening to think that I could end up back in the ICU in a matter of days or hours just by picking up an infection that my body would ordinarily fight on it's own. GPA is not a disease that goes away, and so even going into remission, which is what I am hoping for, there will always be the chance of the disease flaring again, whether that is in a couple of weeks or many years in the future. For now though, I am taking each day as it comes. I am 3 treatments into my 6 treatments of chemotherapy, and if all goes well I will be finished by the end of the year. I have significantly reduced my dosage of prednisone and am feeling well on the lower dose. I have gained enough strength to do most of what I need to get done on any one day, and have a wonderful understanding husband who does everything that I cannot do, or finds someone else who can do it for me.

Life with GPA has given me a lot of perspective. I have thought a lot about things I have never had to think about before. I will leave the philosophical side of things for another day and another blog post - there is much to be learnt from the challenges that life brings us, and I know I am only just beginning.

My journey in discovering Wegener's Granulamotosis

For those friends who have been following my journey over the past weeks, I am now home and have finally been able to write about my experience in more detail.

In August I started experiencing some strange pain in my joints. I went to two separate doctors and was given an appointment to see the Rheumatoid specialist on the 13^th of September.

On the 3^rd of September I went to seek out the specialist on my own at the government hospital where she works. I was told that her first available appointment was in October. That afternoon, I was admitted to the ER at the private hospital with intense stomach pain.

Inconclusive tests and increasingly strange symptoms left 6 or 7 specialists in the private hospital baffled as they came to see me each day. Joint pain, strange rashes, stomach pain – one morning all stopped and I started coughing up blood.

It was thought that I could have some kind of auto immune disease and the hospital began to send my blood samples through to more sophisticated labs in Bangkok. While waiting for the results my condition worsened and the hospital could no longer deal with my case. We decided to move to the government hospital hoping that if they could not help me that they would send me to the royal government hospital in Bangkok to see the specialists there. On the 9^th of September, I was moved into the general ward of the government hospital. That night at midnight my oxygen levels continued to drop and the doctor put me on a ventilator in the ICU.

It was only the next morning that a diagnoses came through from the blood results that we had been waiting on from Bangkok. Miraculously they came through a day earlier than is the norm. The doctors told me that I had been diagnosed with Wegeners Granulamatosis, or GPA. A rare auto immune disease – and as far as they know only the second case ever to have been diagnosed in Thailand. My lungs were severely affected, but thankfully my kidneys were not yet.

Treatment started immediately. I remained in the ICU for 6 days on a ventilator, and eventually the pipes were removed and I was put back on oxygen. I was moved out of the ICU into a private room where I had my first chemo treatment and was monitored until I was well enough to go home on the 22^nd of September.

I am thankful for so much – having completely out of the blue been given a taste of how close one can come to losing ones life unexpectedly. I was held in prayer by thousands all over the world and as I fought for my life in the ICU each day, God was so tangibly close to my side. It has been a deeply fulfilling struggle, even though that seems like such a contradiction. I know that struggle is not yet over as I now live my life with this disease that I didn’t know I had. For now, I take every day in my stride, prayerfully asking for God’s leading and healing. My family and friends have been amazing and one of the hardest parts of the suffering was to see them watching me suffer. I knew deep down that I would make it, but I cannot imagine how watching me must have felt for each one of them. My mom and dad came to Thailand and became the parents while Noiy waited 24hrs a day outside the ICU. Noiy’s mom had been staying with us since I was admitted to the private hospital. We would not have made it without the amazing support system of family and friends that put aside their own lives for me. I am deeply aware of the sacrificial love of family and the phenomenal strength of character of the people in my particular family – there is nothing quite like it and for it I am forever grateful.

Please continue to keep me in your prayers as we walk this journey together as a family. My treatment will be re-evauted over periods of 3 months, 6 months and 2 years. For now I am being strongly medicated and will continue with Chemo every 3 weeks. Noiy and I know that we are called to this purpose and that this is but a stumbling block in our journey. The stumbling blocks however are sometimes what we learn most from and in all that we have learnt already, I can say that I am thankful – not only to be alive and to continue to serve our Savior, but to have had such an intense experience that can draw me closer to Him for who I live my life.