Remembering Our Loved Ones

I was privileged a couple of years ago to speak at a remembrance service for those who had lost a loved one. The following is the text of the words I presented at the service. T

The final prose is attributed to the chaplain and pastoral care team of Wesley Private Hospital, Brisbane, Queensland. I post these thoughts on my blog with the hope that someone who has lost a loved one will read it, and gain some good thoughts from it.

I must confess that when I was asked to say a few words here today, I wondered what I could really say to you. What feelings can I express to you that you have not already experienced. And then I must also state that I feel very humbled to be in your presence today, because you have experienced a sad loss, and many of you are well on your way to healing. I have also learned a lot from the funerals I have been the celebrant and I am grateful for the association I have been privileged to have with the family and loved ones of those who have passed away.

Losing someone or something you love is very painful. After a significant loss, you may experience all kinds of difficult and surprising emotions, such as shock, anger, and guilt. Sometimes it may feel like the sadness will never let up. While these feelings can be frightening and overwhelming, they are normal reactions to loss. Accepting them as part of the grieving process and allowing yourself to feel what you feel is necessary for healing.

When we think of our loved ones who are gone from us, we mourn, but we also give thanks for these lives that touched our own in such significant ways…husbands, wives, children, parents, siblings, family, friends… We are better people for having lived and loved with them. Lives end…but faith teaches us that love doesn’t. Love is eternal and the bonds of love are not broken by death.

There is no right or wrong way to grieve – but there are healthy ways to cope with pain. You can get through it! Grief that is expressed and experienced has a potential for healing that eventually can strengthen and enrich life.

I would say again: Grief is a natural response to loss. It’s the emotional suffering you feel when something or someone you love is taken away. Some people say “time heals all wounds”. But it is not the passage of time itself that brings resolution, but the way we work through the stages of grief.

Grief is love, and it is because we feel such pain – because the inner ache is so great – that we know the depth of our love. Grief simply cannot and does not exist except where there has been love.

Grief is not a mountain to be climbed, with the strong reaching the summit long before the weak. Grief is not an athletic event with stopwatches timing our progress. Grief is a walk through loss and pain. There is no competition and no time trials.

I suggest to you today that we accept the fact that our loved ones have left us. But we need to give them a continuing stake in how we live. In this way, they are not just part of the past in our memories or of the present, but will continue to live and to achieve through whatever we have taken from their lives and added to our own for the benefit of others. And by doing this, we can feel a wonderful closeness to them.

This may be the first Christmas that you are without your loved one. Don’t be afraid to grieve, for grief is an expression of your love. Get support from family and friends. Surround yourself with positive people. Think about, talk about and treasure the memories of your loved one. Heal in your own way and in your own time.

 The experience of grief is powerful. So, too, is your ability to help yourself to heal. In doing the work of grieving, you are moving toward a renewed sense of meaning and purpose in your life.

“Love Remains”

When you lose someone you love,

It’s hard to make sense of anything.

How do you keep on going?

What’s the point of it all.

 You long for sleep with the hope

That when you wake it will all have been

Just a terrible nightmare.

But sleep becomes the enemy! The respite it offers, a lie.

Each time you wake the pain seems to have increased.

How do you recover from this?

Somewhere, in this pain and anguish.

Memories begin to filter through.

As the days and weeks go by they become a bitter sweet gift,

That over time, brings comfort and healing.

Cherish your memories.

They are built on the love you shared

And that love remains forever in your heart.

It’s the one thing that can never be taken from you,

And ultimately, it’s the one thing

That will give you the strength to go on.

In the days to come may your memories bring tears,

Peace, healing and joy as they help to ease your pain.

From the Wesley Chaplains and the Pastoral Care team

CHRONIC ILLNESS AND THE KINDNESS OF GOD

I have been reflecting on the love of God and how that love relates to the chronic illness and pain that I have been experiencing for most of my life, without any relief. I suffer with an immunodeficiency, which, over the years has done irreversible damage to my lungs and liver, and which gives me excruciating gut and joint pain. I take doses of painkillers each day, and also opiod drugs twice daily, but there is no relief for the pain.

I continually have streptococcal pneumoniae, bronchiectasis, pseudomonas, upper respiratory infections and chronic sinusitis. I take massive doses of penicillin daily as a prophylactic and also have intramuscular penicillin injections. Every 28 days I have an intravenous injection of human antibodies, which is infused through a portacath on the right hand side of my upper chest. The immunoglobulin infusion should help me to avoid some of the infections, but it has very little effect. It would seem that I have had this immunodeficiency for most of my life, and I can recall as a child being regularly in doctor's surgeries getting prescriptions for what was diagnosed as bronchitis, pneumonia and lung infections. That was before immunology was a medical discipline. 

Everything came to a head in 2008, when I was 66 years of age. I had been visiting specialist physicians in Hervey Bay as my health was deteriorating rapidly and I had severe weightloss. Eventually the specialists referred me to Wesley Private Hospital in Brisbane, and after a three week stay in hospital it was found that I had common variable immunodeficiency (CVID), a very rare primary immune deficiency. 

I was referred to a clinical immunologist, who has his consulting rooms in the Sandford Jackson Building, Wesley Hospital and treatment was begun to work toward making me more comfortable. The specialists told me that nothing could be done as far as cure was concerned, but they would work toward making me comfortable and perhaps having a better quality of life. My immunologist has been a tremendous blessing; I have access to him whenever I need and he has been so understanding and helpful. 

I look back through my 74 years and contemplate the physical problems that I have experienced and ask: "Where Is God?"  Over the years I have found great comfort from the Scriptures and appropriating the words of  the Epistle to the Hebrews "I will never, never, never leave you nor let you down." At 12 years of age I came to faith, when I realised that God loved me so much, that He sent His son, Jesus to this world, that those who believe in Him will have everlasting life. (John 3:16). I must confess that over the years I have been very unfaithful in following the commandments and claims of God on my life, but I am grateful that God has never let me down.

When I look back on my childhood I do not consider that I had an enjoyable one. When I was 18 years of age I married Tess who was the love of my life. Together we had five children and realised some of our short term goals. However I was absolutely gutted when she passed away with metastatic melanoma when I was almost 40 years of age. This was a time when I questioned my faith and asked the usual questions about why did God do this to me!

Over the months following Tess' passing I experienced an inner peace and an assurance that God still loved me and gradually my faith become stronger. I look back now at this time and see lessons I learned about dependence on God, acceptance of other people, the uncertainty of life, the inevitability of our own mortality, and many more. I went through this tragedy and eventually came out the other side stronger. I had to learn that there are no guarantees that life will be easy and calm, but there is the guarantee that God will never leave me. I married Beryl and we have had a wonderful married life and have celebrated 31 years of marriage.

One particular comment that I have found unhelpful as a chronic illness sufferer, is when people say that I am looking well. Very often I have felt very unwell on the days people have made this comment.

Over the centuries people have found much comfort from the Psalms, finding the messages from the Psalms a source of comfort. For a person dealing with chronic physical or emotional pain, the Psalms present another level of comfort.  Those who have a strong belief in God and also endure a chronic illness, probably have struggled with their faith. The question asked could be: "Why hasn’t God made me well?" The fact that one's physical pain remains day after day, month after month, or even year after year, may well cause heavy discouragement.

It would be easy to assume that if one seeks to live by God’s will and loves Him, God will always relieve that one’s physical suffering. Yet, there you are still bound by pain, disease or disability. Does the lack of physical relief mean that there is something wrong spiritually? It is also easy to assume that because I try to serve, honour and worship God, that he should make me well when I am suffering from illness or pain.

It is right to read the Psalms for comfort and encouragement, but sometimes I fail to notice that several of these beloved Psalms speak about people of faith who suffer from chronic illness. It does not take one long when reading the Psalms to notice that a number of these songs speak about people of faith who suffer from chronic illnesses.

 

So think about this . . .

St Paul, writing to the Corinthian church, refers in the second letter to the Corinthian Christians, 2 Corinthians chapter 1 that they have the opportunity to experience spiritual comfort from God when they endure troubles. Therein lies a concept which is foreign to many: Christians can have troubles, enduring or chronic ones.

It seems to me that you have to experience trouble before comfort means anything. The point I am trying to make is that we all want to experience the comforting love of God, yet we would rather avoid needing that comfort. Comfort is meaningless if we have no heed for it. I can't help but think of St Paul who mentioned that he suffered from a "thorn in the flesh". What this "thorn" was is anyone's guess, but the lesson God wanted to teach him was that God's grace is sufficient for every thing that happens in our life and His mercy shows up best in weak people! 2 Corinthians 12:8-10: Three times I begged the Lord to make this suffering go away. But he replied: "My kindness is all you need. My power is strongest when you are weak." So if Christ keeps giving me his power, I will gladly brag about how weak I am. Yes, I am glad to be weak, or insulted or mistreated or to have troubles and sufferings, if it is for Christ. Because when I am weak, I am strong.

In the following Psalms there are three messages:
1: Christians experience troubles;
2: God is fully aware of our sufferings, there are no secrets from God;
3: God sometimes chooses to give only spiritual comfort. That is a different course of action that we often expect from God.

I: Psalm 6 

Don't punish me, LORD, or even correct me when you are angry! Have pity on me and heal my feeble body. My bones tremble with fear, and I am in deep distress. How long will it be?
Turn and come to my rescue. Show your wonderful love and save me, LORD. If I die, I cannot praise you, or even remember you. My groaning has worn me out. At night my bed and pillow are soaked with tears. Sorrow has made my eyes dim, and my sight has failed because of my enemies.

And this song concludes with an uplifting sense of hope and relief:

You, LORD, heard my crying, and those hateful people had better leave me alone. You have answered my prayer and my plea for mercy. My enemies will be ashamed and terrified, as they quickly run away in complete disgrace.

II: Psalm 8:

I often think of the heavens your hands have made, and of the moon and stars you put in place. Then I ask, "Why do you care about us humans? Why are you concerned for us weaklings?" You made us a little lower than you yourself, and you have crowned us with glory and honour.

This song is a contrast between the frailty of humankind and the majesty of God.

 

III: Psalm 10:

Why are you far away, LORD? Why do you hide yourself when I am in trouble? 

The author felt alone, helpless, overwhelmed by trouble and grief.  This feeling is familiar to those who have chronic pain or illness and suffering. But as we read this song, the author is able to find bolstering for his spirit, but not necessarily for his body.

 

IV: Psalm 11:

The LORD is my fortress!  . . . The LORD knows everything we do because he sees us all. 

The song writer sees God as a "safe place" for him . . . like a bird that can take to the air and fly high above any threat.

 

V: Psalm 23:

This well-known and much loved song speaks of  "walking through the valley of the shadow of death" or alternatively "through the darkest valley" without anxiety It declares a person can be restored, refreshed in spirit, while greatly challenged physically!

I would suggest the following Psalms would be very worthwhile reading:

Psalm 25:16-17; Psalm 31:7, 9, 10; Psalm 32:3-4; Psalm 34: 6, 8, 15, 17-19; Psalm 38 (this is an incredible song!); Psalm 41; Psalm 42, 43, 57 and 63; Psalm 72:12-14; Psalm 77 (sleepless nights, long hours of self-analysis and growing discouragement); Psalm 84; Psalm 88:15 (a person with a life-threatening illness since childhood; fatigued and depressed); Psalm 102 (stressed out, loss of appetite due to discouragement, poor sleep patterns).

The longest Psalm in the Bible is Psalm 119 and a favourite for many readers. But there is chronic illness language in this Psalm - "I am laid low in the dust", "My soul is weary with sorrow", "My soul faints with longing for your salvation", "I have suffered much", "Trouble and distress have come upon me", "My eyes stay open through the night".

As I have read through the Scriptures over the years I find no Biblical justification for the idea that all people of faith are quickly relieved of all trouble or suffering. But God does promise that He will never leave His people, even if they feel alone, and they can always find peace of mind and the spirit.

And so I conclude that a person can find strength and spiritual health through the kindness and mercy of God.

1 Peter 5:7  God cares for you, so turn all your worries over to him.

 

The Rev Dr Ronald Just BTh MPhil, ArtsD(Theol)

Ordained: New Tribes Mission (Australia), July 1967
Ordained and credentialed: New Covenant International Ministries Fellowship, 1995

Living With A PID

In The Beginning . . .

Today, Wednesday July 1, 2015, I am sitting in front of my computer after a day ill with vertigo. I have been resting and now feeling slightly better.

However, I want to write this blog about living with a primary immune deficiency, which in my case is the granulomatous variant of common variable immune deficiency. To abbreviate this I will use the initials CVID. 

I am 73 years of age, and as I look back over the years I acknowledge that I have experienced considerable ill health. I was fostered and my foster mother took responsibility for me when I was two weeks old. My foster mother told me that I was a pale and sickly child and it was considered that I would not survive childhood.

I can recall as a child being in hospital for the removal of my tonsils and adenoids. I also recall that from the age of five years I seemed to spend a lot of time in doctor's surgeries, being treated for asthma, upper respiratory infections, sinusitis, and ear infections. Consequently I was always on the antibiotic that was available in the late 1940s. My foster mother must have had some concern about my health because we used to travel a considerable distance to doctors' surgeries, on the tram and then by walking. At that time we were living in a suburb that was basically all bush and trees, with a few houses along a beach line.

I was also a suffer of migraines, and had an episode of this almost every second week. This continued until I was in my mid-30s. Migraines were not properly diagnosed in the 1940s-1950s so I was considered to be having bilious attacks. Consequently I was always dosed up with cod liver oil. The first meal I had after the migraine was over was toast and vegemite, and this is probably why I love toast with vegemite so much!

As I continued through my teenage and early adult years I was continually in a doctor's surgery being treated for some bacterial lung infection. I would be treated with penicillin and in most times I was close to contracting pneumonia. I would try to make sure I was not in an environment were people were coughing or had influenza, but it seems to make no difference. When flu shots became available I would always make sure I received the vaccine each year, but still had infections. One of the reasons we moved from New Zealand to Queensland, Australia, was because of warmer weather, and an environment that we hoped would reduce the number of lung infections.

In November 1998, Beryl and I moved to Maryborough, Queensland, having purchased a lease on a motel in that city. We worked hard and in my view did a remarkable job of running the motel. We had casual help in cleaning, but we ran the front of house operation, did most of the cleaning, reservations and kept the financial records etc. 

In early 2000s I had my appendix removed. Apparently I had had appendicitis flare-ups, but because of the amount of antibiotics I was taking the appendicitis cleared up, but left behind scar tissue which attached itself to the bowel. I am grateful that my GP made a correct diagnosis even though the surgeon did not think I had appendicitis but decided to operate since I had been admitted to the private hospital.

In October 2004 Beryl and I organised a weekend down on the Gold Coast to attend our grandson's 21st birthday. Family had come over from New Zealand and other members of the family came up from Canberra. During the weekend I felt quite ill and noticed that I was passing dark urine. On the night of the 21st birthday party, which was held in Woodside,  I became very sick and my body must have been in some form of shock. I had uncontrollable shaking, and could not get warm. We returned to the motel at Broadbeach, but I was unaware of travelling back there. The next day I felt a little better and we returned to Maryborough as had been planned. 

On Monday morning, after cleaning the motel, I went to our GP and he said that I could either have a blood test and then go to hospital, or go to hospital and then have a blood test. I chose to have the blood test, and after this returned to the motel to continue working. By now, I was passing urine that was almost black. Around 2pm my GP called and told me to go straight to St Stephen's Private Hospital. I was on IV antibiotics for one week, with nil by mouth. I had a severe liver infection.

After discharge from hospital I returned to working in our motel. We eventually sold the lease on our motel in April 2006, having bought a house in an Over-50s Residential Park in Hervey Bay six months earlier in anticipation of selling the lease on the motel.

After settling into our home in the village, my health started to deteriorate. I had been experiencing considerable pain in my left knee while I was still in the motel, and an orthopaedic surgeon had been giving me injections into the knee to relieve the pain. After we left the motel I returned to the orthopaedic surgeon for further examination as the injections were not working. An X-ray revealed that the top of the bone above the knee cap had broken off and it was decided to operate and insert an hemiCAP. This is a screw that was inserted into the bone which filled the hole caused by the bone breaking away.

I applied for disability pension and was granted this, and it was actually paid by the New Zealand pension system. Around the same time I started having lesions forming subcutaneously, and I was referred to a physician in Hervey Bay who diagnosed that I had sarcoidosis. Sarcoidosis responds to prednisone, and so I started taking a light dose of prednisone. This did not help at all, and in fact after one month I found that I was losing my eyesight.

As a result of this, I had to have my cataracts removed surgically and also with laser treatment as there was a build up of prednisone crystals that could not be removed by surgery. The physician had to rethink what was causing my subcutaneous lesions, which had been excised. Around the same time I was referred to a gastroenterologist and had an endoscopy. There were some small lumps removed, which were benign. 

However, I was experiencing considerable weight loss, and I had lost 20kg. I had liver pain and a biopsy was taken of the liver, and I had lobular hepatitis. However, I continued to be unwell and the gastroenterologist said he could not help me any further and referred me to Wesley Private Hospital in Brisbane, under the care of an interventional gastroenterologist. I was in Wesley for a total of three weeks, and a considerable amount of tests were undertaken. One of my major problems was gut pain, but nothing showed up in the CT scans, ultrasound or MRI. 

Although nothing showed up on the imaging it was decided that I would have a diagnostic laparoscopy on my gall bladder. This was done, and my gall bladder was full of stones. Another liver biopsy was undertaken while I was in Wesley, and again I had lobular hepatitis. The blood tests indicated I had chronic anaemia, renal impairment and hypogammaglobulinaemia. I was then referred to the clinical immunologist at Wesley and I was eventually diagnosed with granulomatous variant of common variable immune deficiency (CVID).

Correct Diagnosis At Last!

The immunlogist was absolutely convinced that I presented with an IgG4 deficiency: infections of lungs, liver, kidneys, sinus. This meant that I needed to undertake intravenous immunoglobulin replacement therapy. This replacement therapy is done every 28 days in the Maryborough Hospital, and will continue for the rest of my life. The IV infusion is a blood product, containing human antibodies. Unfortunately the effect of this therapy does not last for long, probably about a week or ten days if I am lucky.

I also receive an intramuscular penicillin injection during the infusion, and am also taking penicillin capsules, twice daily as a prophylactic. Over the years considerable damage has been done to my lungs, and I have bronchiectasis, COPD, as well as streptococcal pneumonia. I have lung and sinus infections almost every day. I also have pseudomonas.

The exact cause of my CVID is uncertain, although it is possible it is genetic. Granulomatous variant of common variable immune deficiency is very rare and as there is no register of CVID sufferers it is really a guess. Some say 1:100,000, but it is not certain. Some research has been done in recent years, and there has been some funding for research into PIDs in Canberra.

At the time of writing this blog I have had over 100 IVIg infusions. Over time I have had the amount of antibodies increased, and presently I have 27g of human antibodies in 400mls of maltose, infused at the rate of 240mls per hour. My infusion is done through a portacath which was inserted about four years ago. With accessing the portacath, changing bottles of the product (called Intragam P) flushing and a hep blocker, my time in the day clinic is about four hours. Intragam P is also nephrotoxic, which is a concern as I have renal impairment. I have my infusion every 28 days.

For me there is no cure. The damage has been done over the years and is irreversible. My specialists monitor any deterioration of my condition, and give me drugs to keep me comfortable. I have considerable pain, basically gut pain, and I take oxycodone (Targin 20/10 and 10/5) twice daily for this. I am reviewed every three to four months by a clinical physician in Hervey Bay hospital, and also every three to four months by my clinical immunologist in Wesley Hospital, Brisbane, a round trip of 700kms. 

I visit my GP almost every month for oral antibiotics and morphine pain tablets. Fortunately all my doctors send my reports to each other and everyone seems to be up with the play. My GP has stated that I am the first patient with CVID he has had in his medical career. Recently when I was in emergency department at Hervey Bay hospital the ED doctor said he had never had another patient with CVID. Fortunately Beryl was with me in the emergency department and gave the ED doctor my immunologist's contact details, and the emergency doctor called him and got information on CVID and how to help me. I was transferred to a private hospital across the road from the public hospital, and my physician is linked with this hospital, so I was taken care of.

I have had a few stints in hospital with pneumonia and lung infections which have required IV antibiotics. I have had four granulomas excised from my arm, basically immune tissue. As well as this, I have oral lichen planus, also caused by CVID. I still have bouts of lobular hepatitis and renal impairment. I have experienced loss of appetite for the last year, and have lost 10kgs in weigh. This weightloss is not a concern, as I am drinking sustagen and other nutritious food.

I had a left total knee replacement a few years ago, as the cartilage in my knee had been destroyed by CVID. I continue to have weird things happen to me physically, and most of these can be linked back to CVID. 

I am very thankful that Beryl is extremely supportive and understands the impact that CVID has made on my life, and the implications for the future. We have tried to live our lives together normally, and grateful this is happening to a great extent. It does have some impact, particularly in terms of mobility as I get exhausted very quickly and unable to walk very far. Also there is the times when an ambulance has to be called in the middle of the night, and the stress and concern this places on Beryl. Also the uncertainty as to when the next episode will occur and emergency assistance will be needed. We know that there will be no improvement in the future, and we try to enjoy each day as it comes.

A few days ago I had another granuloma excised from my right arm. I am awaiting the histology of this, but I am sure it will be another piece of immune tissue.

A lot of my time is now spent resting particularly in the two weeks leading up to my next IVIG infusion. This is something that I have to come to terms with, and this time of resting is used for reading and studying for sermons and other involvement in my church. Fortunately, Beryl and I have active participation in our village and also in our church. Beryl plays outdoor bowls twice a week and indoor bowls twice a week. Beryl is also chairperson of the village social club, which arranged special events monthly in the village, eg the village dinner and also the village barbecue lunch held on the last Friday of each month.

Summation:

The above sums up what is happening to me in terms of my immune deficiency and the effects it is having in other parts of my body. I hope it also gives some insight into other effects this is having on us emotionally and psychologically. People often say to me that I am looking well. This comment is quite unhelpful, because most of the time of do not feel well, and also probably experiencing considerable pain. Other people feel that the treatment and drugs I am taking will make me better. Again, this is unhelpful because these drugs are prescribed to make daily living more comfortable. I am constantly feeling unwell with joint pain, gut pain, kidney pain, sinus infections, headaches, breathing problems and fatigue.