Today, I am thankful for my pain

I can't say that very often, most days I resent my body, I resent that I have struggled with this pain in varying degrees for the past 20 years.  But today, I am thankful for my pain.

I have a friend who has two angel babies, ones that didn't get to stay on earth and are waiting for her in heaven.  I cannot imagine how that feels, the horror of empty arms, longing to hold the precious miracle you were promised.  Yet even in my complete lack of understanding, the struggles I watch her going through in so many ways echo with mine.

Neither of us know why we are here.  There was no accident that caused this situation.  There are things that we could have done differently, and we will always be plagued with "if only", but we both know that this is the path that God put us on, and He is the only one who knows why.

The pain keeps us both up at night, and haunts us every day.  We try to distract ourselves, to not feel the agony for a brief second, but it is always right there.  Some days we look fantastic, and people assume that we have gotten over it, but that is their wishful thinking, really they are the days that we are lying the best.

We both research, ways that others have coped in our situation, but the problem is no-one has ever lived our *exact* situation, and the solutions are never quite one-size-fits-all.

This is where the similarities end.  I have finally had a scan that shows the problems with the nerves in my legs!!  I truly don't know why I wasn't offered this ultrasound years ago, but I have had it done.  I have a doctor that has told me he is willing to do a peroneal nerve release at the fibular head.  This is the same doctor that did my ulnar nerve release, and I woke from surgery in less pain than when I went under, so I am expecting amazing things from this surgery.  I will have my life back!!

But I pray that I will never forget this pain.

And I feel guilty that I have an end in sight, when my dear friend will live with her loss forever.

So I pray for her.  I pray that the days where the effort to get out of bed in the morning is too great to overcome will become fewer and further between.  I pray that her nights will be filled with more restful sleep, that the darkness will no longer be filled with the loneliness of desperation.  I pray that people will remember her precious babies forever, and stop expecting her to "get over it" and stop giving her shallow platitudes that cannot ever hope to fill the gaping hole in her heart.  And I pray especially that her pain will lessen, that it will be less raw.  But I actually also pray that it will stay with her, that her angel babies will always be a very real part of her.  Because that is what makes her so admirable. 

Today I am thankful for the pain because with it, I have gotten to have a glimpse into her heart, to actually be alongside her and hurt with her.  I know that this is something we are going through together, and that it has made us so much closer than either of us ever imagined.  I just wish that could have happened without hurting so much!!

Starting the clearout

On Saturday we held a Garage Sale.  As part of the plan to move to the Gold Coast, we need to downsize, MAJORLY!!  We have made a dreaming/planning board, and we are working towards moving!

We walked around the house, and tried to work out what was important enough to pay to move it to the Gold Coast, and what we could get rid of beforehand.  Being a list-maker, (and ever-efficient organiser, as my sister calls me in her blog Musings of a Muddled Mum ), I of course made lists

And then I went through my DVDs.....

Anyone who has known me for a while knows I love my DVDs.  I pride myself in having a very large collection, and absolutely love being able to lend people the movies that they have been wanting to see.  So to even think of culling my DVD collection caused major anxiety for me.  But I did it, and we had around 300 DVDs to sell

I did my research on Pinterest, and made sure I knew all the tricks to having a successful Garage Sale.  I made sure that prices were clearly labelled on all the smaller items, with a list on the wall for everyone to see of the prices of the larger things.  

I have had Garage Sales in the past, and barely sold anything, and I spent the day running around answering questions and having extremely rude offers on my precious things....
This time was going to be different.

And I am so happy to say it was.

The people turned up earlier than I advertised, but I expected that.
If people balked at any of the prices, I was able to offer to barter if I felt comfortable.
I had another dear friend selling her beautiful designer clothes, so in the lulls I had great conversations learning more about her.

And we sold our stuff!   There was so much left at the end that I am not really sure what it is that we sold, but the money we counted at the end told a different story.  Happily, the cost of the move ($3-4 thousand!!) is a little more dealt with, less to move and some money towards it.

So now I hope that we get a job really soon, and that I can continue to sell our stuff on Gumtree.  I've got momentum now, and the downsizing is feeling really positive, so hopefully it continues to go this well!

I have a doctor who believes me......

At the start of the year I saw a specialist.  He made me feel fantastic.  Actually, he just made me feel heard, and with my undiagnosable pain, being heard is a huge thing.  He made me feel like it would only be a short time until things were being sorted out.  He told me to go, and he would think some more on my situation and get back to me.......

After a month, I excused him, saying he was a very busy specialist, and I couldn't expect him to drop everything for me.

After two months, I excused him, saying that my situation was tricky, and I couldn't expect him to just jump in and do the nerve release we had discussed.

After three months, I started to think that maybe I had dreamed it all.

After five months, I was pretty sure that he had forgotten who I was.

After six months, I started ringing his receptionist daily, trying to get some answer, any answer. Every time, she told me she would talk to him, and call me back, and every time I would have to call again, because she never did.  Until one day I actually got a call, which turned out to be a disappointing one, left on my voice mail "I am very sorry, but Dr does not think you are a candidate for surgery."  NOT the call I was expecting at all.  We made an appointment with him, and insisted that he explain what he was thinking, and how he had managed to forget me.  He pleasantly surprised us, not only had he not forgotten me, but he had been doing some research, and decided that I must have Charcot-Marie-Tooth Disease, and I had to get the genetic testing done.  So I started the roller-coaster of visiting another doctor, explaining my story, more tests, etc etc.  Fortunately those ones came back negative, and I was relieved that I didn't have that awful disease.  But it put me back where I was at the start of this year, having to go back to the first doctor and retry to convince him I needed the surgery.

A week ago, I sat back down with my lovely doctor.  Once again he made me feel heard.  Once again he made me feel like we were moving forward.  He sounded very convinced that the nerve release in my arms was exceedingly successful, and that the equivalent operation in my legs was the right way to go.  He warned me that I would have some rather large scars on my legs, and I answered that the scars were such a small price to pay for being pain free and able to walk properly again, and that I really didn't want to live with this pain a single day longer than I had to.  He seemed very convinced.  So I asked him when we could go ahead....

HE DOESN'T EVEN DO THAT OPERATION!!!!  But he would be keen to watch when it does happen!!!

I don't know why my arm surgeon sent me to him??  I don't know why I have spent countless hours going to him, explaining my story, ringing his receptionist trying to get an answer.

So as I picked my jaw up off the floor, he told me that he would make some calls "tonight" and I should ring his receptionist in the morning to find out what I was going to do next.  He was going to ring my arm surgeon first, to see if he wanted to do the surgery in my legs, then ring another specialist to see if he would do it instead.  He reassured me that he would pass on all my story to the next doctor, so I wouldn't have to sit and explain everything to him.  I left there a bit disconcerted, but certainly happy to seemingly have a doctor as my advocate.....

I rang the next morning, and was told that he had tried to call my arm surgeon, but he was away, so my Dr would be calling him over the weekend, and I should call back Monday.

I rang on Monday, and was told that he had a very busy weekend, and she would ask him last thing what was happening and call me back on Tuesday.

I didn't get a call on Tuesday.

On Wednesday, I was starting to feel despondent, so got my wonderful hubby to call, and he got the same run around, they would talk to him and call me back.

Here I am Thursday night, a week later.  I have heard NOTHING.

I don't know what I'm meant to do.  Where is the point that I cross from persistent self-advocate to crazy & annoying??  

I don't want to live with this pain anymore.  I have a specialist orthopaedic surgeon who can explain to me exactly what is happening with my nerves, that they are inflamed not compressed, so they will show up perfectly on every single scan you can throw at me, and nerve conduction velocities will be normal.  I have a doctor who believes me!!  But for whatever reason, he is not helping me.  

So I keep waiting.

I will call again in the morning, if I can bring myself to do it.

I can already feel myself slipping, the reality of waking up each morning in pain is a lot to bear, and the thought of being rejected again, told I have to start the whole process again with a new doctor, is such an overwhelming concept to me, that I wonder how I keep pushing.

Then I find myself again in the Psalms.  King David has been such a huge comfort to me, the way he seems to be struggling with depression and anxiety, but still he turns everything back to our amazing God and relies on His strength.  Psalm 119:50 "This is my comfort in my affliction, that your promise gives me life."

Why Didn't You Call??

One of the things that caring people say to me when they hear how much I am struggling is "Call me if you need some help".  It sounds like a great thing to say, and I am grateful for the offer........

But I am extremely unlikely to ever call.

Firstly, probably the biggest reason, is that on the days where I possibly would consider calling, when my pain is at its' worst and I am unable to do anything but put myself back to bed, I can hardly remember my own name, let alone remember who I could call because they had offered to help.

Secondly, the stress of picking up the phone, actually admitting for a second time that I really need help (the first when we were talking and you offered), is so daunting that it is easier to just let it go.

Then there's the question, what will I ask you to help with? What if I pick something that you absolutely hate doing, and then you either feel guilted into doing it, or you would do it half-heartedly and resent me, and then probably never offer to help either me or possibly anyone else again.  At least, that's how it turns out in my head when I have been over-thinking things.

So you can see, my over-thinking basically means that I never accept help.  Well actually that's not true at all.  It's actually not that hard to offer to help if you actually want it to be accepted.

Firstly, don't say it as a platitude.  Don't say it just because it seems like a nice thing to say, and you're secretly hoping they won't take you up on it, like when you ask how someone is and only want the answer to be "good, how about you?"

Then be specific. To be honest, where I am at, I am so overwhelmed with absolutely everything, that it wouldn't matter what you offered, it would be one less thing that I have to do, and that is a huge plus.  And I have spoken to friends in very different situations, one who had lost their precious new baby, another whose husband had lost their job, and they completely agree.

So what can you offer?

Take the person out for coffee.  Sometimes people who are in need of help feel trapped at home, and that makes them feel very alone.  Even offering to visit at their house is better than leaving the person alone.

Cook them a meal.  Make it one that is freezable.  When my dad had a near-fatal car accident, we were inundated with lasagnes, ending up with about 3 weeks' worth.  That's all we ate for the first week, but after that, it was fantastic to have spare meals in the freezer for days when we felt overwhelmed.  If you want to make one that is best eaten straight away, then arrange with the person a few days in advance.  Another really nice meal-oriented offer of help is to ask the family over for dinner, which also helps with the person feeling alone, but be prepared that they may have to cancel at the last minute.

Pick up their ironing.  And tell them how long you will take, so that anything urgent doesn't have to be chased up.

Take a load of washing or two, especially difficult ones like sheets or towels.

Mow their lawn.  Don't assume that they have teenagers so it's covered.  When one person in the family is suffering, the repercussions flow onto the whole household.  Yes the teens could do it, but they are also probably already doing so much around the house that a "normal" teenager wouldn't be asked to do.  I know in my house, my teens cook/clean/wash regularly.

Babysit. Give the parents some time alone together.  I know that my pain puts a lot of strain on our relationship, sometimes at the end of the day we are too exhausted to hang out together, we just go straight to sleep, and with excessive medical costs, romantic nights out are few & far between.

Send a note or gift.  Something that shows you are thinking about them.  Flowers or a card can often brighten many days, every time you see them, you are reminded of that person's love and concern for you.


And I could go on.  Everything that you need to do around your house every day/week/month needs to be done around mine as well.  And I struggle with pretty much all of it.


And one of the biggest tips I can give, be aware that some peoples' struggles go on for a very long time.  People are often inundated in the first few days, what I call "crisis care".  People first hear about the situation and jump in to help, but when they hear that the person is still struggling weeks or months later, they aren't as inclined to help.


Luke 6:38 

"Give, and it will be given to you; good measure, pressed down, shaken together, running over, they will pour into your lap. For by your standard of measure it will be measured to you in return."

Big Changes Ahead

This is a hard post to write.
Firstly, I don't want anyone to be offended that they found out our big news via my blog post.  I have tried to let some people know, but for various reasons I haven't been able to tell them.
Secondly, telling the world makes me more accountable, makes it all a bit more real.  People will be asking me how the plans are going, and if God decides that this isn't the right thing for us, then I will have to explain why we didn't do it.

But the thing is, I truly think God is telling us to do it.

What are we doing??  Moving to the Gold Coast...

We have been playing with the idea for absolutely years, every single time we go there on holiday everyone in our family says that they want to live there.  Even when we drove through when visiting friends on the Sunshine Coast we wish we lived there. Being self-employed, we couldn't just up & move, we had loyal customers who we wanted to continue to help.  But the recent downturn in our local economy meant that we had to close our business, so that reason to stay was removed.  Hubby getting a full time job showed him that was employable, even without tertiary qualifications, which was something he had struggled with.

The final piece in the puzzle was given when we went on holidays to the Gold Coast at the start of August, we left the cold Central Coast and discovered the beautiful, mild winter weather of Queensland. And I was in so much LESS PAIN. 

I know what you're saying, I was on holidays, of course there was less stress, but there was less stress for more reasons than just being on holiday.  Everywhere on the Central Coast reminds me of the hard things we have lived through.  The streets where family lived or still live.  The worry of walking through Erina Fair and running into one of them.  On the Gold Coast we can make new mistakes, I know we will still be taking ourselves with us.  That all our hurts, habits & hang ups will still cause us the issues that they cause us here.  But that constant rub in your face reminder, the fear that they will do something and "attack" again, that will be gone.  And that will be a HUGE relief!!

So we are making plans.  We have contacted a friend who works in a school up there that can put feelers out for us.  We have made lists of what we need to do.  We have contacted moving companies for a rough estimate so that we know what we have to save up for.  We have even applied for some jobs for hubby.

Now we start down-sizing.  We are looking at everything and wondering how much of it we really need.  Weighing up the cost of moving it against the necessity of it.  So even if this doesn't work out, we will definitely benefit from the de-cluttering & downsizing.  

But I know it is going to work out.  And we are going to move interstate!


I keep praying.  Pray that we make wise decisions.  Pray that it is truly the best thing for all the family. Pray that we will keep excited, and use that excited energy well.

The biggest thing I pray for is that we will find a great Bible teaching church on the Gold Coast.  We are so blessed at EV Church, that they are so firm on teaching from the Bible, and teaching us to seek the truth, not what we feel, not what society thinks is best.  I pray that as we find our new place in the world, that our place in eternity will never be compromised.


WE ARE SO EXCITED!!!

And we promise that you can come & visit, even if we have to stack all the furniture to fit you xoxo

Not the Road I was Hoping For

Those crossroads I was facing, well I was truly hoping that I would get a diagnosis. It wasn't a great diagnosis, but it was at least an answer.  Something to answer when someone asked "What's wrong with you??".  Something to tell the doctors at the Emergency Department when I had a flare up, so they didn't just think I was after heavy duty pain medication.

Last Thursday, the doctor happily flourished his paperwork, and announced that my tests came back completely clear.  He started to tell me what a good thing that was, but I think he realised my despair when I couldn't stop the tears streaming down my face.

So now..... 

Chasing doctors, trying to get appointments, trying to get them to understand the gravity of what I am dealing with. Trying to make them see that my arms were improved with the nerve release, my legs are following the same progression, so surely the fact that my arms and legs are in the same body, there is the slightest of remote chances that they might be doing the same thing!

Research, research, research.  Try to find solutions, different explanations, so that I can ask the right questions.  But also remember that if I make it obvious that I have been researching, the doctors put their walls up, so I need to work out how to steer the conversation without saying "What about this ...".

Praying.  As always, I ask God to heal me.  Actually, more often than not I beg for it.  Pray that He will open the right doors so I can get answers. And pray that if I have to live with this, he will give me strength, because without Him I am completely unable to go on.  And I pray for patience, patience while I wait to get into doctors, patience to deal with the condescension from doctors, and from people who think that they have solutions, who "know someone who".




I really hope that this path leads to a solution, that some time in the foreseeable future I will have my pain taken away.  I at least hope that I can get a diagnosis, something to work with.  I am not really sure how I can cope with nothing, with this pain forever with no actual reason, I truly hope it never comes to that