What's in a name?

I have spent 20 years chasing a diagnosis.  Trying to get a doctor to say those magic words "I believe you" - I have an explanation for exactly what you are going through, it's not all in your head, it is a very real thing.

I'm still not really there.  But yesterday, I got close.  

I went in for the follow up to my nerve release in my legs.  The doctor asked me how everything was going, and when I told him that the nerve pain was gone, he wasn't surprised.  Not only was he not surprised, he was expecting it.  And he was so convinced, he had already looked at his schedule for when he could do the same surgery on my right leg.  The nerves in my left leg were so badly damaged when he went in to release them, that he knew I was going to have instant relief.'

My problem is, I don't know why my body is doing this.  Why have I needed to have the nerves released in my wrists, elbows, and now my knees?  I think it's because I have all the characteristics of Hypermobility, and my Physio agrees.  Unfortunately, a Physio agreeing isn't the same as a diagnosis.  And without a diagnosis, if I have another flare up in another joint (such as my ankles), I am going to have to go through the agonisingly long process of convincing a doctor that my history shows that it is most likely nerve entrapment.  Each different flare up has taught me more of the right questions to ask, but why do I have to know the questions????

And my next concern, what if this is genetic.  What if I have passed on the way my body is structured to any or all of my kids?  Are they looking at the same path as mine?  How much will being able to say to doctors "my mum had this" is going to help make the doctors pay attention?

So do I pursue a name?

Do I ask someone, my specialist or my GP, to quantify what exactly is "wrong" with me?  Will this give me a sense of closure, knowing that there was a legitimate reason for my pain, that there have been and will be others who have had the same thing?  Most importantly, can I use this name to help others?  Will it help my kids to be able to give an actual medical term if they are having the same symptoms?  And can I then go out and find others, and support and encourage them?

I keep coming back to the same question.  Now that I can see a light at the end of the tunnel (and I'm pretty sure it's not another train), what do I do with this?  This has been too large a part of my life for too long to mean nothing.

How can I use my pain to help others?

I think I have a book in me, it is starting to bubble away in the back of my mind, and I think it may be time to start spending time with it, seeing if it is worth coming out into the bright light of day.

I think I would like to start doing some professional speaking.  I love standing up in front of a crowd and engaging with the audience, whether through song or through words, and I think I may have a lot to say.  I would like to tell people to trust themselves.  To push when they think they know they should.  To not take it when the "experts" try to squish them into a box that doesn't fit.

Most of all, I want to tell people how amazing God truly is.  Every step of the way, I can see His hand all through every single aspect of my life.  

I am reminded of the Footprints poem, and I know so many times there is only one set of footprints in the sand of my beach.  So many times in my life that I couldn't have possibly taken one more step myself, and that Jesus has always been the one to carry me.  I want to tell people that the level of your suffering does not mean that God loves you less, or more, than anyone else.  That suffering just is.  And whatever your level of suffering, God wants to use that suffering to make you cry out to Him. 

The Depth Of Your Pit

It's a strange thing having a painful story.  People never know how to react. Worse than that, I start to see that people feel that they can't share their struggles with me, because they have judged my situation "so much worse", that their troubles couldn't compare.  So to help them, and me, I have come up with a little theory - THE DEPTH OF YOUR PIT

Having trouble in your life is unfortunately par for the course, no one can escape it, no matter how well they seem to hide it. 

If you are at the worst point you have ever been, you are at the bottom of your "pit".

Now in comparison to my pit, yours may seem shallow, and in my personal struggle, I wish that my pit was the same depth as yours

BUT....

The depth of your pit is the depth of YOUR pit.  It is still the deepest you have ever been.  You are still sitting in the miry mess that is normally at the bottom of a pit.  You are still sitting there looking up at the sky wondering how you will ever get out.  Exactly like me.

I think if we can learn to look at each others' struggles with this thought, then the need for comparisons and competitions can be removed.

Personally, I like to hear about other peoples' struggles.  Not because I get any sick enjoyment out of it, but because I know first hand the joy and hope that is born from someone taking the time to listen and hear what is being shared, and I hope that I am able to give that to others.

I often ask God why he has given me these struggles, but I equally ask Him to give me ways to use them, to not let them be for nothing.  I truly believe that everything I have been through has made me more compassionate.  And for that, I am so very thankful for everything I have been through, and will continue to go through.

Less than a week to my operation

I really wanted this to be a happy post.  I don't want to whinge, I want to be excited that my surgery is almost here..... 

I remember those last weeks of pregnancy, when I just wanted my baby in my arms.  

When I was so uncomfortable I couldn't sleep, could barely walk, and everyone asked inane questions about how long I had left.  

That's what this feels like.  

Every position I find that makes one part of my body comfortable, is ridiculously uncomfortable for the rest of me.  And everyone who asks is surprised how quickly the surgeon got me in, and say I must be so excited that it's so close.  And I am.  

Actually, I'm not.  At the moment I am completely fed up.  I am cranky that it took 11 months from my first presentation to hospital in absolute agony for any doctor to even suggest doing an ultrasound of the nerves in my knees, the equivalent place to my elbows, when I was having IDENTICAL pain in my legs as I was in my arms.  I am cranky that I started talking to doctors about the weird symptoms I was having 20+ years ago, and was written off by every type of specialist you can imagine.  I am exhausted that my dysfunctional family was often pegged as the cause, making me dredge up that stress over & over & over again.  I am even disappointed that the doctor that told me he would "get me in within days" of my appointment took 2 1/2 weeks.

I am so impatient.  I want it to be next Wednesday already.  Actually I want it to be the month after that, when I have had both knees done and I am (hopefully) pain free.  Then I really want it to be at the point when I am fit & active again, when I can say I will do things and not let anyone down. 

And I'm so lonely.  I have a great circle of friends, who I am friends with in real life as well as on Facebook.  When I share my struggles on Facebook, they read them and then when they run into me they tell me how they care, and how they have been praying for me.  The problem is, as I become more of a hermit, unable to go out to many places because of the pain, I don't run into them any more.  So the encouragement I had been getting disappears, at a time when I need it even more.  Then I beat myself up about it, because I know that it's my fault I'm not running into them, not theirs.

And I am scared.  Scared that this operation won't be the answer.  Scared that something else will fail in my body, like my legs did after my arm operation.  Scared that I am still recovering from Chronic Fatigue, and that even with the pain gone, I still won't be able to get things done.

My biggest prayer at the moment is for peace.  I know that in the light of 23 years of pain(7300+ days), 5 days is absolutely nothing, but I seem to be sitting in that time thinking through everything I could be doing if I was well, and worrying that things won't go to plan.

I am also praying for answers as to what I am meant to do with this.  How can I use the lessons I have learnt through this battle with doctors to help others?  I don't want what I have been through to be for nothing, because I don't quite know how to cope with the idea that it just happened and that's it. 

So if you have taken the time to read this, I thank you.  I am grateful that you care enough to be on this journey with me.  My one request of you is this, please let me know.  Just like the post I shared this on.  Or comment.  Or call me.  Or drop in, I'm almost always home.  And remember, I am not the only person you know that feels alone, please let someone else know you care, because they may not be in as good a place as I am, and your call could be the one thing that stops them doing something permanent.  Let them know you care, before you can't. 

What is my identity?

I have had a friend comment recently how I need to be careful not to let pain become my identity.  That they have seen a lot of people with pain let it become their identity, and I need to be sure that I don't do that.  While I think this is a valid comment, I think it truly comes from a place of misunderstanding.

My pain is all-encompassing.  I very rarely have a moment where pain isn't on my mind.  If I am blessed with a time without pain, I am considering how hard I can push myself so I won't end up with a major flare up.  When I wake in the morning, I lie there as long as possible before moving, because at that point I have a relatively small amount of pain.  When I get dressed, I decide what to wear based on how much it will irritate, or make things difficult throughout the day.  I cannot do a single thing without pain having an impact.  My pain is the filter that I look through to see my whole life.

My pain has changed me.  I am no longer the person I was before I had chronic pain.  I can no longer put my shoes on and clear my head by going for a long walk.  I can no longer work full time.  I can no longer make plans without warning that I may have to cancel at the last minute.  My past self is just that, past. Even if I have my operation and have my pain taken away, I will never be the same person again....

And I am so glad!

I am now more compassionate.  I understand what it's like to have an "invisible illness", that looking at a person is never enough to understand them, that they may be battling far more than I can ever realise.  

I am proud that I am outspoken about my pain, that I don't simply hide it, because it has allowed me to have great conversations with people who also have pain, helping them see that they aren't alone, like I have so often felt.

So back to my friend's comment, about pain being my identity.  I think my pain makes other people uncomfortable.  I also think that they don't realise how all-encompassing it truly is.  The fact that I can talk about anything else is the thing that is amazing.  So my identity is certainly shaped by my pain.

I have also been incredibly blessed by my pain.  I have seen how strong & comforting God is.  I have learnt how to have amazing joy, even when it seems I have nothing to be happy about.   I have learnt that my hope is in Jesus, even when my life seems completely hopeless.

So what is my identity?  I wear many hats.  I am a wife. I am a mother.  I am a friend.  As important as each of these are, they do not have eternal significance.  And that is why my identity is in Christ.  Christ died for my sins, to allow me to be reconciled with God the creator.  Without Christ, my life would have no hope, and in my darkest times, I would certainly find no joy.  

"Do you not know that your bodies are temples of the Holy Spirit, who is in you, whom you have received from God? You are not your own; you were bought at a price. Therefore honour God with your bodies." (1 Corinthians 6:19-20)

The outside of my temple may seem broken.  At times it may seem that all I can consider is my pain.  But know this, at all times I hold onto the verse

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.  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 Corinthians 4:16-18)

Emotional Recovery??

I have been struggling for the last few days with what to write.  I really want this blog to be an honest reflection of my life, but when things get really sticky, it's not something that you necessarily want to share.  But since this is my Road to Recovery, and it is my emotional recovery just as much as my physical or spiritual recovery, I am going to share it.

I had an amazing weekend.  But I also had a completely rubbish weekend.  And unfortunately, the rubbish is what you stew on in the week following.

On Saturday I caught up with a friend, one who I hadn't spoken to in 2 years (almost to the day!).  It was hard for me to contact her, I knew I owed her an apology, but I felt very hard done by, and felt that as I was in the right (or so I told myself), I was better off without her.  I was wrong.  Having coffee with her, I knew that I had missed her, and I am very glad that I have gotten to the point where I could admit my mistakes and apologise.  We both agreed that we were in a really bad place at the time, and that we both made mistakes.  I know I can't jump straight back into the deep friendship I had with her, but I hope over time that we can build back up an even better relationship.

On Sunday, after church, we went and had a picnic at Avoca Lake

We took our own kayaks down, and shared a fun afternoon with two different families.  I was nervous inviting the second family, because I had originally organised the picnic with one of my oldest, dearest friends, but the day was so much fun for everyone.The guys watched the kids on the water, while the ladies chatted and had a child-free (ish) afternoon, it was sublime!

Unfortunately that was the end of the amazing weekend.  That afternoon I received a very toxic text from a different friend, abusing me for a mistake I had made in communication that week, and ending our friendship.  She said some very hurtful things in the message, and I am still floundering to work out where it all came from.  

Then that night, probably because I was so stressed from the text, hubby and I had the argument that had been simmering away for a couple of weeks now.  It was one of those arguments that are completely awful when you're in it, but it actually got things resolved..... I think.  Neither of us were feeling heard by the other, and it was interesting when we worked out that we were both arguing the same issue, but from our own point of view.  I hate that sometimes in marriage, you can be completely convinced that your spouse is trying to hurt you, and that everything they do is a calculated attack on you emotionally.  I wish that when I was in that head-space  that I could remember that he is the one person I know that has always had my back, and that the thought of hurting me is the furthest thing from his mind.  I also wish that I could stop reacting to every little thing, so I will stop making him feel that I am attacking him.

So now I am stuck in the aftermath of the weekend.  I keep stewing on what happened with the toxic texts.   I know that I handled things badly in this situation, but I cannot work out why things have blown up like they have.

My biggest stress in this is I am asking myself, have I been a true reflection of Christ?  I stood up for myself, and my daughter, and refused to have someone dictate how I should behave or allow them to treat us unfairly.  Did I do that with honesty and integrity?  Does being a Christian mean that I have to just lie down and take it?  I really don't think so.  I am so tired of having people accuse me of not being a Christian when I am not willing to let them walk all over me.  Why does being a Christian mean that I am a wimp?  Jesus certainly wasn't a wimp!

So that is the question I am left with, and one I will put to you, my dear readers:

If you are being treated unfairly, how should you respond?  And if it means that the person attacks, what do you do then?

What would Jesus do????????

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

Crossroads

This week I feel like I am coming up to a fork in the road.

On Thursday I am getting the results from some DNA testing that I had done.  These tests were suggested to me by a specialist who had told me he could and would help me with the nerve pain in my legs.  When he rang me to tell me that he didn't feel that surgery was an option, I was devastated.  Now that sounds weird, being upset that I couldn't have surgery, but after having the exact same progression of nerve symptoms in my legs as I had in my arms, and knowing the relief on the recovery table after my ulnar nerve transposition surgery, being told that he wouldn't operate on my legs was devastating.I felt like he was fobbing me off, like countless doctors have done over the past 20 years when dealing with my pain.  But we insisted on having another follow up with him, and he convinced me that he hadn't forgotten me, he had actually been researching me, and that he strongly felt that this was the answer.

Hereditary Neuropathy with a tendency to Pressure Palsy.

It's hard to say, let alone get your head around.

The specialist I had to see to have this DNA testing done had an absolutely lousy bedside manner.  He read my notes, and hardly asked me any questions.  When hubby and I put things to him, we seemed to be interrupting him.  He did all the nerve conduction tests in his office, and told me straight up that it wasn't going to be HNPP, but he would do the blood test anyway, since I was there.  He also told me that any relief I got from the ulnar nerve surgery was most likely circumstantial, and that I wasn't actually experiencing true nerve pain!!

So I left there absolutely devastated.  To have so many therapists work with me, and say that they felt conclusively that my nerves were compromised, this guy was just a jerk!!

That same week, a good friend had found a Public Forum into Chronic Pain, and I was booked in to go.  It was then that I was able to ask my questions, and tell them how I had pushed and pushed for so long, trusting my knowledge of my body, knowing that the pain wasn't in my head.  They then used my example in the response to several more questions telling them to keep pursuing the answers.  At the end of the night, I spoke to the MC who was a researcher specialising in lower limb and ulnar nerve neuropathies, and he said that I definitely sounded like I had HNPP!!  He said that I sounded like I had a classic case, and he would be very surprised if my DNA blood tests came back negative.

So I had to sit and wait.  I had my appointment in September, and all I could do was wait. 

Then I got a call from the specialist, saying he had my results, and could I come in the following Thursday.  I have no idea if they just didn't realise I had an appointment already, or if something came up in the tests.

I started looking at different hereditary neuropathies, and discovered Charcot Marie Tooth Disease.  I couldn't believe how perfectly it fit, not only the nerve issues, but also IBS and failing eyesight. Type B also presents with nerve conduction velocities within normal ranges.  I was so angry with this specialist, who wrote me off, even when his reasons were so inaccurate.  I kept researching, trying to find less significant causes, but I keep coming back to this.  

So now, the crossroads.

On Thursday, I will enter a new phase of my life with pain.

The first option, is the doctor tells me that nothing showed up, that everything is "perfect" (as I keep being told),  In this scenario, I have to resume the fight, to get back to other specialists and insist they help me find the true cause of my pain.

The second option is the doctor will finally give me a diagnosis.  An actual name for my condition.  Something that when people ask me what's wrong, I can say a convoluted name that they've never heard of, but it certainly doesn't sound made up.  And then I can work out how to live my life with it.  What the prognosis is, how other people have dealt with it, possible medical interventions.  I can find support groups, other people who have the same thing as me.

It is so hard to know which way to pray.  Both ways are going to be hard.  Both ways are going to have their toll on my family.  As always, I am asking God to heal me, but I also accept that He has His plan, and it will come about.  The only thing I know, I will trust Him through this.  

Here I am

I had been toying with the idea of starting a blog for ages. I knew what my subject was, but couldn't think of the name.  For some reason, naming things seems to be my stumbling block.  Then so much happened this week, and I decided to take the plunge, and jumped in with my Parking Permit post.  So now I think I had better introduce myself.

I love God.  This is the thing that over-arches my whole life, and I strive to make all my decisions with His strength.  Of course, I am human, so this is something that doesn't always happen..

I love my husband.  He is my Prince Charming, the love of my life.  I was so blessed to meet him in high school, and he is my absolute best friend.

I love my kids.  I have three teenagers, and they are pretty extraordinary  I love watching YouTube videos and awesome tv shows like Doctor Who and Buffy with them, and generally hanging out with them.

I love my family, but only my adopted ones!  I have some beautiful friends that I consider my family, and they go a long way toward filling the hole.

I love my dogs, Lily and Marshall (and obviously How I Met Your Mother).  They are beautiful Beagliers, bought to give me company, and they do that well.



I don't love my chronic pain.  

Since I was a teenager I have lived with pain.  In the last 10 years it became constant agony.  And the hardest part was that no tests that the doctors ran found anything wrong.  After a month in hospital, and a month in a mental health ward, a doctor finally agreed to do surgery on my arms, and for a brief period of time, I was relatively pain free. (of course, that's a story for another blog post) 
Now I am living with constant nerve pain in my legs, with the doctors running a similar barrage of tests, and I am still hitting the same brick walls.  At the moment, I am waiting for DNA test results, hanging on the edge of either knowing what is happening with my body, or having to start another fight for answers.......

I don't love my biological or married-into family.  These people have been the source of the most pain & suffering in my life, hurting my heart worse than the pain the nerves are causing me.  The decision to cut all ties with them has been the best decision we have ever made, but they are certainly persistent!


I hate mushrooms, they make me gag ;)


So thank you for reading, I hope to share along my journey of recovery, recovering from my abusive upbringing, recovering my health, and recovering my faith in God.

Pain, Perseverance, Psalms and Praying Hard!

I have decided to start blogging, mostly because I think it will give me accountability, and a way to look at my experiences and work to find the positive in them.  Also, because I hope that I can, in my own small way, I may be able to help someone out by showing them that they are not alone.  

I am a wife and mother, a Christian, and someone that is dealing with chronic pain, with no official diagnosis.

In this blog, I hope to share my challenges and victories, as I struggle with all of those aspects of my life, how to support my family and still look after myself and manage the pain, and struggle to nut out God's plan in my life.

Disability Parking

Yesterday I picked up my disabled parking permit...  

A lot of my friends are excited for me, which I guess show that for some time they have felt I need the assistance.  My husband is completely relieved, knowing that even when he drops me at the door, at the end of a shop, when I am completely exhausted and can barely walk, I hate to wait for him to pick me up.

I am not really sure how I should feel. 

There's a huge part of me that feels like I'm giving up.  That I am just saying "yup, I'm disabled, I won't even try any more".  I feel that I have said that I won't ever be better than this, that this is my life now, and that I will always be in pain.  That there is no longer any reason to fight, to keep pushing doctors for the answer that is so elusive.

Then there's the part of me that feels like I'm a fraud, that there are people so much worse than me, people who can't even walk, or even drive themselves anywhere.

Then I consider the reality of my physical condition, what I have to consider on a day to day basis.  The fact that a trip to Coles to get milk takes a huge amount of consideration, and includes a lot of time circling the car park trying to find a park close to the door.  The amount of times I have seen the half-dozen disabled parking spots empty, and I ended up parking in the furthest corner of the place, exhausted by the time I got to the door!  

And the clincher for me, the one that actually made me park in the space, was thinking that there is most likely someone out there that is struggling, and hasn't been blessed with the same thing, that they are cursing the empty spots and praying for a close spot, so I did my bit, took a hold of the gift I have been given....



And for once, after my quick Boost Juice run, I was in the least amount of pain than I have ever been...

The lesson I learnt, that there are things in place for people like me, and that if I have qualified for assistance, that means I am allowed.  And if it helps me have a better day today, and a little less pain, then I will park in my spot.