Sunday, November 6, 2011

Surprises

No entry for September. Why? I had pain. Very severe, sudden and excruciating pain in what felt like was my bladder. It increased and increased in frequency and severity to the point that I dragged myself up out the door to go to the doctor.
Scans found a 'mass' of unknown quality. HUGE! 7cm on the right ovary. The GP wasted no time in getting me to a specialist, insinuating that I'd probably get a laparoscopy done (surgery cut for a camera to go in, with possible removal of lump).

I should note that the initial finding of the lump was a great shock. So I cried! Thankfully a friend asked to drop over that day, so instead of dropping over, she picked me up from the clinic in tears and kindly prayed for me. I felt great peace that stayed with me for the several weeks after, once having a good cry and entrusting everything to God.

So I was all set for hospital. Got lots of friends to pray. I packed all my essentials, and since my parents were away, got organised to stay with relatives post-operative.

For the details of surgery and ME and how they might relate, my specialist said to make sure I drink plenty of Aquaforce (a scientifically balanced energy drink which I take regularly anyway. It basically increases blood volume and keeps sugar/salt/magnesium levels balanced etc. Great for when you are stranded feeling light headed somewhere!) before surgery. AND also to keep up vitamin B12 intake with the other synergistic aids (vit E, Metafolin etc), which rid of the excessive nitric oxide/oxidative stress on the body. That way the general anesthetic won't hit so hard, 'just speaking from clinical experience', he said. It made sense. So I packed it all!

Finally I went to the women's specialist with a friend. He asked me about my menstrual cycle. He got excited when I told him it coincided with the scan.

To cut a long story short- after a 2nd scan, through people's prayers, the fact that ovaries do strange things naturally, and that cysts are quite common in women, it turned out that:
1. The doc was happy not to open me up
2. He pointed out 2 smaller cysts
3. I've not had any pain of this nature since.
4. IF it does come back again, I'm to go straight to hospital, with all my scan shots.

Surprise! What a roller-coaster. I'm not sure what that was all about, but I do know that I was saved from having to go into theater, and the pain has gone of it's own accord. I know that God answers prayers because he answers mine and others', time and time again. I think this was just another example.

I can't imagine how horrible general anesthetic, surgery and ME would be like together. For now I'm thankful I don't have to!

Sunday, August 7, 2011

A scrawled poem I stumbled upon still sums me up

I am a weakling, and you are strong
You are the Light whilst I hold dark portions
What- that this fragile and broken, black pot
has strangely, with thanks become your home!

It is not at all what I chose on that day;
Ability suddenly syphoned away
But You show your glory in weaklings you say
So hope in me here I with joy; wait and pray.

Monday, June 13, 2011

I'm getting tested for XMRV (a retrovirus), despite the scientific controversy.

I did this a few weeks ago. Cost a lot of dosh. My parents paid. Blood shipped in eight vials to Belgium. Very generous of my parents. I feel Grateful. White blood cell count and activation also will be checked, along with cytokines. It will be interesting to see where things lead given the current scientific debate. I'm reassured though by my parents and doc that it will not be a waste of money or time. Let's hope so!
I'm more skeptical than I'd like to be, but I guess I'm fighting off being let down by a scientific 'red herring'. It's clear that I don't put my life in science's hands! But I am very, very grateful for everything that scientists do for us, and I advocate whole-heartedly and handedly for more of it.
Thank you smart scientists! Keep up the great work:)

lesson #6: True Family Needed and True Family needs us Weaklings

I wrote this ages ago, and only now have had the get-up to edit and finally publish. Old thoughts made fresh with a click of the button. So fresh to me even! Amazing.

Sick people are often isolated from daily interactions in the normal circles of uni, school, parenting groups, work, sport, mosque, scout, church, volunteer networks or cause groups.
Even friends' events become a more occasional effort to muster (still with pleasure for me though!).

However Mark Sayers (along with many sociologists) explains that it's not just the marginalised that feel isolated. It's a cultural thing that everyone is often behaviourally isolated in this individualist generation. Our sense of 'family', community and commitment, of covenant has dwindled historically, particularly in this 21st century. Watch and read his blog if you're interested- it's definitely worth a look.

The Jesus faith is about being welcomed into God's family through Jesus himself. It's non-negotiable. If I'm an adopted daughter, then I automatically live with brothers and sisters in the world who I need. They need me. We belong to each other as we do to Jesus.

Being sick gives us opportunity to show that bond and allow family and others to care. Practically. As someone who needs practical help, I need to show my needs so they can meet them, and fullfil their sibling or friendship roles. I care for them as they care for me. I can pray or listen. I can be thankful, allow people to serve me, to 'wash my feet' metaphorically speaking. It was humbling and hard the first time it started to happen for me. I wanted to do things by myself, to show I could cope. 'I can do the house-work! It just takes some energy out of me so I've not much left'. 'I can cook, it's just really hard some days'.
'By-MY-SELF' was the first phrase I learnt to stubbornly repeat as a toddler. Seems not much had changed..til much later. I waited for someone to offer, which they did, but I then failed to take them up, because I didn't want to be a burden. Then things began to dawn on me. I've lost a bit of my pride since, for which I'm grateful.

Yes, with a little prompting from my housemate, I phoned/emailed up my church and asked for regular support and help. BIG deal for me! But I did it, and it was very liberating. I also arranged city council help for a small fee. Now I receive prayer, regular meals dropped off (taking into consideration my extremely picky dietry needs as specified by fructose malabsorption (commonly a CFS/CFIDS issue- around 70% of patients) and other spontaneous offers of help as before... just 'let me know when you need something!' Now finally I take up offers. Oh and the council lady is a GEM! It's taken me a little while to get used to receiving help- but it's much easier now!

It's truly healthy to feel free to say 'Please can you help?'. And 'thank you'.
From a Jesus' 'pedicure' perspective (it sounds bizarre, but it's a beautiful story of Jesus interacting with his friends before he dies- check it), it's the essence of following him anyway- saying 'yes please!' to God's love which is extended even to his enemies. It's allowing your embarrassingly 'smelly feet' (and the rest of you) to be washed by a King- who surely ought to be receiving our services! We are simply asked to say: 'I need you'. 'I need help'. 'Thank you'. It's all we can do. Very humbling. There's nothing I can do to equalise the giving with a deed to match, I just need to accept. And then we are commissioned to do the same for one another ongoing! The great thing about Jesus for me is that He helps and serves me everyday in so many ways, including washing me on the inside- wiping the grime of my selfishness and pride (self-sufficiency?) away with his blood and tears shed on the cross.

I am part of a body of people who are my family, not by blood but by Spirit. Some of this family attend my local church. Some don't, they are part of other churches. Incidently, not everyone at my 'local church' are guaranteed to be part of this body, though. The definition of being a 'body' member is being loved and washed inside by Jesus, in faith- and following him.

Every Jesus person is a 'body part'. Some body parts are weak or seemingly useless, like pinkies or earlobes, love-handles or double chins. Eyebrows. You get my drift. Some are apparently strong or useful: like muscles, abs, lungs and kidneys. I would liken the latter to, say, the doctors, front stage people; the preachers or youth group leaders, social-workers, soup-kitchen coordinators, or singers. The former, who knows? That's the thing. We often don't see the weak members do their little bit, 'cos that's them by definition almost. I'll have a go though: the gardeners and cookers, the strays or those who constantly seem on the margins of community, mixed with whole different worlds. The loving grannies who can't leave the house except once a week. The boy with Down's. The depressed and mentally unwell. The chronically ill (includes me: surprise!).

God gives everyone equal value. Not only that, but that we should give special attention to those who seem 'the least'; in opposite proportions to our automatic inclinations. Read Corinthians 12 here and here for reference in the most popular book every written.

Nobody really wants to announce with a megaphone that "I am a gift of God to you". So I why am I writing something that could make me look arrogant at worst, or a guilt-mongerer at best?

Someone who suffers, is a nuisance or who seems useless in any way for serving is really God's deliberate implantation for the good of his people. We are an opportunity for God's people to grow in patience, love and care for one another. We are a reminder that God's kingdom is made up; not of the successful or most efficient, nor the smartest or most active. In fact, all of us are rather useless to God in and of ourselves, really. It's only God's gift of Jesus- the Head- that gives us any life at all. Life so we can begin a feeble journey of learning to live and love and function as a body part- valued. Useful. Dependent on Jesus most of all.

I invite you to ask someone for help with anything as you may need it. Ok here's my obvious marketing mode switched on (Hey- we all market something, it just so happens that Jesus has changed my life and others' unimaginably, so that's who I do it for!): 
 I also want to encourage you to consider the idea of joining the diverse and eclectic flock of the Jesus' clan- us self-confessed spiritual weaklings; to care, and be cared for, if you've not ever thought to before. It's like nothing else this world of competition and independence could offer. It's crazy-love.

Saturday, May 21, 2011

#5: Still dancing inside!

Well the dancing thing has helped! It has given me a way of expressing my creative side as well as my urge to worship God. I've had to time myself with my ipod clock- keep it under roughly 5 or 6 minutes (this month); 1 song, which is what I can cope with in terms of aerobic exercise at present.


I do strength exercises on alternate days still. This is only when I have not over-done it. Last week, over-doing it was seeing a few too many people after a trip to the hilly Dandenong mountains with my good friend from France (here only a month!). I also won't do exercise during post-exertional malaise (PEM), crash-time and for a few days after this, not until my 'immune flare-up' (as now succinctly described in the latest article  on immune signatures of CFS/ME (wait 45 seconds to download for free)) has resided. Discerning when to build a little strength again is quite hard sometimes... but I can usually tell nowadays.


I have actually weakened in my exercise capacity, and thus overal energy capacity. But hey- winter has set in, chills get caught more easily, especially when my ability to regulate body temperature is akin to getting a drunk man to walk straight. Again, part of the package. A package that means I need to be gracious towards myself when I get it wrong, whilst forgiving and educating others when they don't understand..


However, I need to learn from my mistakes. Always blow-dry my hair in the new house, even if it's sunny outside (or I will get a chill and crash). Try to do something biggish with a FORTNIGHT gap inbetween, not a week. So I probably won't go to Phillip Island this weekend as planned. I'll take it easy.


Gifts have come to me from outside and inside, to encourage me in the bad days of PEM, which was last weekend, and then some.


Outside: My friend Anna came today to play me a song on her guitar from a psalm in the bible. It was too loud, but it was beautiful. It wore me out when she strummed enthusiastically from less than a meter away (sensory overload)! We laughed about that when I told her because she thought she was blessing me, which she was- kind of!  Then she prayed for me. 'God loves you, Kara!' was the message. Beautiful! Very thankful.


From inside: remembering that God is all I have, and that if I'm to die now, I lose nothing, and gain everything (it often feels like death during PEM). 'To live is Christ, to die is gain' (Phillipians 1:21). Heaven is my home.


Another Outside encouragement- Reading the book of Lamentations, now in chapter 3. Along with the cries of the writer, I can also recognise that though I do not suffer because of specific sins (in contrast to the Israelites experiencing the punishment of horrific exile, as warned), it is true that considering my stubborn shunning of the Author of life over the years, nothing I do really has me deserving of the gift of life itself, let alone the deservedness of good health. This is actually encouraging because it reminds me again of God's grace to me, that he even graciously breathes life, keeps my heart-beat daily, enough to pour out my anguish to him, comforting me in the knowledge of his compassion, loving presence and faithfulness. And also, that God does not 'willingly afflict anyone'.


The writer repeatedly uses the ancient Hebrew terms (transliterated) 'yhl' and 'qwh' to refer to 'hoping' and 'waiting expectantly' simultaneously- for God. The promise is that for those who do so, his goodness comes. It's certainly something that any one of us can do! That's all God wants! What a relief: no more performing, just waiting for Him, with expectation that He is enough. We don't need numerological studies for a date to do this, unlike the apocalypse predicters this past weekend!


Recalling God's compassion amidst loss is the center-piece of this little bible gem Lamentations, as well as it's 3rd chapter, as is helpfully summarised by Barry Webb in 'Five Festal Garments: Christian reflections on The Song of songs, Ruth, Lamentations, Ecclesiastes and Esther'. I recommend this read for anyone who wishes to study this book and understand it!


What's also kept me dancing on the inside has been the encouragement of friends who have responded to the Chase Community Giving request this week. If you haven't already, vote for 'Whittemore Peterson Institute' in CCG, which supports research, advocacy and treatment for the pathophysiology of neuro-immune diseases such as ME/CFS, fibromyalgia, atypical MS, and autism. I emailed all my family and friends, and most of them haven't responded yet! Sometimes people need a little reminding. I'm encouraged by a fellow sufferer in the US to keep on at it, without shame or fear of annoying people. It's worth it, I have to remind myself! 


We all need hope, and I have discovered great perseverance and hope from fellow sufferers through years and years of this. Thanks for your inspiration- you know who you are! For me, my sure hope is in God, as his promise of full healing is found in Jesus who has healed, who does still, and one day that is what I will have for certain in him, physically, emotionally for good. This future hope helps me to keep working towards it today, and God's Spirit himself empowers me to dance towards it too! 


The following bible passage shows how this can be anyone! Simply through faith in Jesus- nothing religious/requiring of anything good on our part! Since we aren't, and can't really...


"Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us." Romans 5:1-4 9 (My italics)


Hope to you!



Saturday, February 26, 2011

Mourning into dancing

"Dry your tears, for soon you shall dance." This was a word given to me at a praise and prayer gathering at my church last Saturday.


Dare I believe it? I will. With all my heart. I've already been dancing. 
This process began when a night of grief overtook me after I began to play the piano on Friday for the first time in, shall we say, a little while? What a waste of this gift that God had given me! So beautiful, these song-gifts. 


I've hardly shared them over the last year. Hardly played alone even. I've been too unmotivated, too fatigued, too burdened with my 'to do' list when I DO have energy, that I've let this gift lie dormant.


But they're not dead I've realised. God knows, he is gracious and has a plan.


Since a night of lament and praise- a public display of grieving and tears, receiving joy, hope, prayers, words and hugs from beautiful women who held me up so I could dance to the last song- I have been released in a new way, again.


I'd been praying about what kind of exercise to do that would actually get me fitter and stronger; out of this frustrating plateau of cyclic floppiness! 


The answer came on Sunday morning following. I can dance! I love to dance before God. I've missed this so much without knowing. This morning, for the second time, I did it in the garden, in front of our hard-rubbish pool on the grass with my ipod pumping 'I surrender...to youuuu... Your love makes it worth it all...' Maybe I'll have over-done it today. Who knows? But either way, my songs are flowing again, my love is growing, his love keeps flowing, and I am joyfully not in control of my days. 


A new day is today. Tomorrow is newer still. And God never takes you backward in his love, only deeper and forward, and I can not wait to see how and where that will be. And it's so like Jesus to give us all of this:

Isaiah 61:
1 The Spirit of the Sovereign LORD is on me, 
   because the LORD has anointed me 
   to proclaim good news to the poor. 
He has sent me to bind up the brokenhearted, 
   to proclaim freedom for the captives 
   and release from darkness for the prisoners,[a] 
2 to proclaim the year of the LORD’s favor 
   and the day of vengeance of our God, 
to comfort all who mourn, 
 3 and provide for those who grieve in Zion— 
to bestow on them a crown of beauty 
   instead of ashes, 
the oil of joy 
   instead of mourning, 
and a garment of praise 
   instead of a spirit of despair. 
They will be called oaks of righteousness, 
   a planting of the LORD 
   for the display of his splendor.

Wednesday, February 9, 2011

lesson #4: All things, good and evil can be used for our ultimate good.

So for 2010 pretty much, not much has changed physically for me. I'm still pretty housebound. I now can't walk that far, like around the block is a Great day for me, physically. If that, I feel on top of the world! I still keep doing my strength exercises like push-ups and crunches, but then one day I might accidently do one too many on top of a busy day previously, and before you know it, I've crashed. Back to square one it seems, after a week almost of recovery. My body is SOoo sensitive! I have to walk on eggshells for it, it seems, and even then, one false move, and merciless punishment awaits. Sickliness to be abhorred!


But I've been learning again and again over the years the following: 
(Romans 8:28-29)
28 And we know that in all things God works for the good of those who love him, who[a]have been called according to his purpose. 29 For those God foreknew he also predestined to be conformed to the image of his Son, that he might be the firstborn among many brothers and sisters.


The context of this is 'our present sufferings' which we're told are not even worth comparing to the glory that will be revealed in us. (v18)


I find that very hard to grasp when the sickliness seems so overwhelming, overpowering. But it's in these moments that I recall that even this moment of yuck is being used by God for my good...Why?


It's so I can be conformed to the image of his Son: Jesus! What an honour! He is using my sufferings to help me become like Jesus- because Jesus had to suffer faithfully before God to demonstrate his complete obedience:
(Hebrews 5: 8 'Son though he was, he learned obedience from what he suffered 9 and, once made perfect, he became the source of eternal salvation for all who obey him.')
 If I'm Jesus' sister, then why would I get out of learning the same, his way? 
Jesus was sinless, yet needed to demonstrate his obedience for God's saving purposes. I'm sinFUL, and need to be CHANGED through his obedience-bought salvation. I need to be changed by him, through trials, so that I can learn what it means to really honour God when things aren't as I want, or even should be.
To learn to obey and rejoice in suffering is...:
To really live for his glory, not for pleasure.
To live for heaven, not this earth and it's gifts.
To live for Jesus and not for myself.


Suffering can help us fix our eyes on what is important...relationships, love, the meaning of life, of death. And like patience is only learnt when it's tested by an annoying child (or mother?!), obedience and becoming like Jesus is mostly learnt it seems from going through experiences that test that allegiance.


The test could be anything!
But it's soo worth sticking it out. Because the crown we receive is not worth comparing to our 'brief' struggles, no matter how arduous they feel. Again,  Romans 8:18 I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.' And 2 Cor 4:17 'our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.' 


Wow. How amazing must heaven be? To outlast and outshine ALL my problems put together! 
So, how do I endure and keep perspective?


I find comfort and focus in thinking and daydreaming of heaven. When things are horrible, it's often then I'm prompted by the Spirit to rejoice in God, because heaven awaits, and it I don't want it to be long, because I'm finding earth really hard right now!! So then I pray, 'Come Lord Jesus', and things feel right. Then I remember that God still has a plan for me to be a blessing to God and others on this earth before he comes- to see heaven invade earth now, and I've a heck of a lot of changing and blessing to do and be still, so I push into prayer and Jesus. I repent of my failings and distractions, and relax; 'cos I know it's Jesus who justifies me each day as God's child, through his sacrifice, not my good works. I get snagged so easy with addictions to ebay, the net and other things, then the battle changes to other things. Say, spiritual pride when I'm doing well; what a joke!  But God is winning in my heart, bit by bit!! He'll finish the job on me, I'm promised; yes.
18 So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. (2 Cor 4)


So, suffering can be the most useful and beneficial thing we could experience, if we learn through it Jesus' way.


That's all for today (a sickly one at that!)..:D