A defining moment

You know what?  I was diagnosed with cystinuria in 1994.  In 2000 I was diagnosed with CIDP.  So technically I have suffered from those diseases for 18 and 12 years respectively.  In that time, aside from my brother (who also suffers from cystinuria) I have not met one other person with either of the illnesses that I have.  I guess that is one of the reasons that they both fall into the category of rare diseases.

But that all changed last Wednesday when I met Keith.  Keith is a great bloke who has just finished going through the stem cell transplant process for CIDP and is currently on his way home for a little r and r.  His story is quite compelling.  He was in the airforce, and about 9 years ago in the post 9/11 era anthrax was all the scare.  As an enlisted man he was made to have the vaccine, which probably caused his CIDP.

Meeting someone for the very first time that had the same disease that I did was as the title suggests, a defining moment.  Having a rare disease can be a really lonely and scary experience.  And although I have conversed with many fellow sufferers on the internet, there is something about meeting someone with the same disease as you that makes you feel a little less alone and makes the disease feel a little less scary.

Keith and I had a good chat about a lot of things from our backgrounds to the disease we share.  What was really great for me was to talk to him about his experience with his SCT, although I do think that some of it may be a little unrealistic as I got the impression that Keith breezed through the process much easier than most people in the program.  Still, it gave me a great deal of confidence.

Well Keith, it was a real pleasure meeting you.  Best of luck with the recovery, I look forward to staying in touch and seeing how you are doing.  I was thinking too, if you are struggling to find something to do in your post CIDP life, maybe you could try for a spot in the US team to the London olympics;)

Until next time everyone, stay well:)

How do I Feel About it All?

There is so much running through my head at the moment it is not funny.  I am literally having to take time out every day to do a self mental evaluation, and the good news is right now, I'm doing fine.  I don't know if it is experience or something that I am just good at but when it comes to stuff like this I seem to be all right.

But there are a million and one things running through my head on any given day.  How do I get there?  What should I bring?  Where should I stay?  What do I have to do before I go?  How do I get around Chicago?  What can I do when I have down time?  How can I communicate with back home?  What are the people going to be like? And many more.

Then there are also the 'what ifs'.  What if something goes wrong with the treatment?  What if I do not qualify for the treatment?  What if I have trouble travelling?  What if something unrelated goes wrong?  What if something happens back home?

The 'what ifs' seem bad, but honestly I have managed to put them out of my mind so far.  A 'what if' scenario is something I can't control.  If it happens it happens, and if it does I'll just have to deal with it as best I can.  What is bothering me most at the moment is logistics when it comes to a support network.

I live in Melbourne Australia.  The trial is based in Chicago USA.  A one way ticket is about $15 hundred and takes about 22 hours to fly there.  One thing I don't want to do is do it alone.  I will if I have to, but if/when things start to get tough it is nice to have one of your nearest and dearest with you to lend moral support.

So who could give me support?  My wife would love to and would be fully prepared to, but then who looks after the kids?  It is unfair to leave the kids parentless for two months.  Like most mums and dads I value the well being of my kids before myself so my wife will have to stay home for the majority.  That lead to the question of why not bring the kids too?  First, two months is a long time to pull them out of school and second, while I'm immune suppressed it is strongly advised to have no contact with children.  While we love our kids and hygiene is something we teach them from a very young age, it is something they do not fully appreciate, understand or practice until they are in their teens.

There is my mum and dad.  They have been more than supportive of me through this, but could I ask them to come to Chicago for two months.  It is a long way to go to be somewhere you don't know anyone, and they too have commitments and obligations they must fulfil.  Lastly, other friends and family.  A number of people have volunteered to come over and help me but like I said, 22 hours and $15 hundred.

In all I should be ok.  If you look at the schedule the first two weeks are just appointments and testing.  I don't need anyone for that and after that I should be able to get someone to spend some time with me. Next time I'll start addressing some of the other issues I have with my trip and how I feel about it.  Until then, stay well:)