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.