Wednesday, November 30, 2011

My number one rule!

If there is one lesson that I try to impart upon all my readers it is to take control of your own health care.  A doctor can give you information during a consultation.  A nurse can treat you while you are in hospital. But there is only one person who is with you all day everyday.  There is only one person who knows how you feel all the time.  There is only one person who knows exactly where you have been and what you have done.  That's you.


Doctors are a great source of information, but every piece of advice, or instruction they give you, you should query and research.  98% of the time you will probably agree with your doctor, but there is the two percent of the time that you may not agree with him (or her).  This does not mean your doctor is wrong, it may just mean they have chosen the wrong option for you.


Even if you do take the doctors advice, you should still know what you are trying to achieve from the treatment, mechanism of action, side effects, restrictions etc...  After all, if you have a reaction to a treatment, your doctor is not going to be there to monitor you.  It will be up to you, so you should know what is going on.


And this advice is not just for people with a chronic illness.  This is for everyone.  Did you know what the number one cause of liver failure is?  You probably think it's alcohol.  You would be wrong.  It is paracetamol, aka acetaminophen most commonly known as their brand names Panadol and Tylenol.  Check out the following link about OTC medications.


Pain Killers More Dangerous than you Think


Please don't get me wrong, I think paracetamol is a fantastic drug, but shouldn't you know exactly what you are taking and what the side effects are so you can keep an eye out for them. The same goes for any drug.  Until next time, stay well:)

True spirit

One thing that I get from conversing with people in health forums on the net is the strength and tenacity of sick people who have been burdened with a disease that they didn't ask for.

Even if they do not feel like it, these people fight against the odds, feeling alone, tired and deflated, many also in pain.  And why do they fight?  They fight because they want to get better.  They fight because they have hope.  They fight because they have true spirit.

One person that is the epitome of true spirit is a lady I met on a CIDP forum called Wendy.  What I feel makes her story so compelling is that about fourteen years ago she tragically lost her first husband following complications of a bone marrow cell transplant  (Similar to a stem cell transplant, just a little more invasive).

One would have thought that this would be enough to put you off for life, but not Wendy.  Tomorrow, Wendy is off to North Western Memorial Hospital to see if she will qualify for her own stem cell transplant in order to reverse the progression of her CIDP, and dare I say it, even "cure" herself.

And why?  Well, only Wendy can answer that for sure, but I believe it is because she is one tough lady that will not give up and will fight her disease until she has either won, or taken her last breath, and she believes that God will protect her and guide her in the right direction.  And on top of it all she is always there to assist or encourage other fellow sufferers.  I can only assume that these are characteristics she carries into all facets of her life.

It is people like Wendy that inspire me, and I truly hope that you find the answers that you are looking for in Chicago.

To all people fighting an illness, remember this.  It is not fair that you have been robbed of your health.  But also remember, you are stronger than you think, and with perseverance you will overcome.

Until next time, stay well:)

If you know me, you're all right.

This is funny.  The only problem is most of my friends are completely mad, so maybe it should say "If your three closest friends are mad, then you're probably OK."  Which means I have nothing to worry about!  Stay well:)


Tuesday, November 29, 2011

Nephrology done

I like to go and see my nephrologist.  He is realistic, honest and punctual.  Punctual?  I hear you say.  Yes, you heard it right.   I have been seeing him for over five years now and he has never been more than five minutes late.  But that is not what I like most about him.

What I like most about him is that he brings out the best in me.  When I first started seeing him he gave me a list of instructions and then asked me whether or not such a thing would be feasible, because if I wasn't going to do it then we should find another treatment regime.  This is one of the few times I have liked a doctor right from the start.

The nephrologist I was seeing before this one basically laid down the law saying that this is what I had to do and there was no way around it.  He even gave me instructions that I knew I was never going to follow.  In the end it put me on a mini self destruct pattern as I would show him by not following his instructions.  I ended up only hurting myself.

But my new doctor is great.  Instead of feeling like the naughty school boy kept back for detention with Dame Snap.  I feel like I am part of a partnership, working together to achieve a common goal.  The doc puts some suggestions on the table, and we discuss them in a civilised, intelligent manner.  We then decide if it will fit in with my life style, and if it does, away we go.

On the down side he does insist I do a 24 hour urine collection every six months which aren't much fun, but hey, when you have an illness sometimes you've gotta do what you gotta do.  Another plus was that he understood exactly why I wanted to do the stem cell transplant.  He even wrote a letter to the doctors at Northwestern saying, and I quote "There is no renal contra-indication to an autologous stem cell transplant."

What a champion.  If only it was always that easy.  Until next time, stay well:)


Movember Movember


Available for purchase at http://au.movember.com/mospace/2596030

Funny funny funny

This can also cause constipation as users end up unable to give a shit.  Stay well:)


Monday, November 28, 2011

Good News!

Hear ye! Hear ye.  Come one come all, gather round, I have some good news to share!  After getting the medical ring around from the medical fraternity I have finally got all the information required to send something of substance to Chicago for evaluation.

I went and saw my GP and he gave me the last two letters of correspondence from my neurologist, my last two nerve conduction studies and the full summary of my medical history.  It was a huge relief as knowing the medical system here if I had followed procedure I would not have been in a comfortable position to send everything across to Chicago until May.

I can feel you asking, "Shouldn't you just have done that in the first place?"  Well, call me old fashioned, but I would have preferred to do this with a referral from my neurologist, that way upon return, the management of my care would have been much more seamless.  However, I have to do what I believe is best for me. And that means doing what it takes to be evaluated for the trial in Chicago.

Just for the record, if she didn't believe my CIDP was bad enough for the trial, why did she write"there is still evidence of a severe demyelinating polyneuropathy"?  Food for thought anyway.  Until next time, stay well:)

Movember Apology

Dear Tyson,

I must apologise, three times I have plugged your Movember page on my blog and so far I have not been able to drive one cent to your page!  Maybe I need to stop referring to you as sleazy pool guy, dirty porn star or gas station robber as these accusations are profoundly untrue (well inaccurate anyway.)

So one last crack!  Come on peeps, roll up and donate to Tyson, all round good bloke and legend in his own mind.  It's for two great causes, Beyond Blue and the Prostate Cancer Foundation, so empty your pockets and open your wallets and feel good about yourself because today you have done something special.  You have made a difference.  Thank you.


That hurt

I am getting worried about one thing.  I am falling over more and more.  I am averaging 1 to 2 falls a week at the moment, and luckily I have not hurt myself too badly yet, but last night came close.

As I do most nights, I woke up to the calling of natures alarm clock, so I got out of bed and gingerly shuffled my way to the bathroom.  Given my cocktail of neurological conditions, urination at that time of night for me is a strictly sitting down affair, so I turned to sit down.  As I turned my foot got stuck and over I went, falling neatly into the gap between the wall and the toilet.

What hurt most was I landed on the toilet roll holder, and it dug into my back just below my shoulder.  So there I was lying on the floor, no way to get up with my pants around my ankles.  Luckily, my wife came to my assistance to view me in this most embarrassing and compromising of positions.  She didn't laugh, but I'm sure once she found out I was ok (well for the most part) she wanted to.

What annoys me is that with all the research I've done on my nerve problem I know that there is a treatment out there that has the potential to improve my condition, and my doctors here in Australia are dragging there feet on nominating me for the treatment because it is dangerous.  Well, isn't living like this also dangerous?

I feel like a ticking time bomb at the moment.  So far I've been lucky to evade a serious injury, but I think it is only a matter of time before I break an arm or leg or worse.  So doctors, do I risk doing something dangerous for a potential reward that is almost immeasurable, or do I risk living my life dangerously for no reward?  I for one have made up my mind.

Oh yeah, you might be wondering what I got my foot stuck on.  Well, nothing.  My foot simply wouldn't move.  I am finding that every day I have to be more careful and vigilant to avoid accidents.  Tick, tick, tick.  Until next time, stay well:)

Sunday, November 27, 2011

even more funny:)

I wish my kidney stones were made of gold.  It would actually seem a little worth it. (And a lot more profitable.)  Stay well:)


Saturday, November 26, 2011

RIP Granny

Last week was an amazingly turbulent and emotional week for me.  I had the wonderful news of the birth of my first nephew and this morning I received the sad news of my grandmothers passing.

Although very sad.  It is not tragic.  Never more than this week I have been reminded of the circle of life.  We're born, we live, we die.  On one hand my nephew has just embarked on the journey of life, and right now he has no idea of the amazing voyage he is about to embark.  On the other hand the final chapter has closed in the story of my grandmother.

And what an amazing story it was.  She was such a lovely person and she would have touched so many people in a positive way.  As a child she was always there too cuddle me when I was sad, laugh with me when I was happy, nurse me when I was sick and discipline me when I was naughty.  Her love was unconditional, her sincerity genuine and her example flawless.

And although she is now gone, her legacy of five children, seven grandchildren and twelve great grandchildren still live on, and she will live on in our hearts and memories for many years to come.

You leave the world a better place for having been here.  Rest in peace granny.  I love you.

Chuck Norris and Kidney Stones

My blog has been quite serious lately, so I thought it time for a little humour.  Apologies to all my fellow kidney stone sufferers, but our struggle is an endless source of humour.  Also apologies to Chuck Norris.  Thought I'd get that one in there before he beats me up with his pinkie toe.  Stay well:)


Friday, November 25, 2011

It's All in Your Head

In the patient forums that I participate in there has been a popular topic recently and that is pain.  Pain is the bodies way of telling us there is something wrong and we need to do something.  Some pains are minor, like a paper cut, some are major, like a kidney stone.

Pain is one of the most highly studied and most common phenomenons in medicine, and for the most part we are extremely effective in treating it.  But not always.  Pain comes in thousands upon thousands of shapes, sizes and intensities and it is impossible for doctors to know how to treat all of then.  For the more complicated cases there is a lot of trial and error until they find the answer.

This is where I believe as a patient you can take charge of your own care.  No one is going to understand your pain quite like you, and no one knows yourself quite like you do.  If you do your research, you, yourself have the best chance of beating the problem.

In 2006 as I have said many times I was in hospital for three weeks.  It was the worst time of my life, and three month later, when the final remnant of stone was removed from my body by the surgeon, the damage had been done.  My emotional state was akin to the aftermath of a hurricane, except there was nobody to clean up.  And even though I had no stone I still had kidney pain.

The doctors said it was impossible as I had no stone or blockage.  They couldn't figure out why, so they concluded that it was all in my head or I was a drug seeker.  I can assure you I am no addict or seeker.  Honestly, if I have pain the drugs are great, but if I don't have pain I want nothing to do with them.  They make me fell weird in a not so good way, and bung up my intestines something fierce.

But there I was. Pain, but no blockage.  Looking back it must have been really bad.  Mentally, I was pretty much rock bottom, yet I felt compelled to do something about it.  So I researched, and I found this source that had a rather alternative view.  For the life of me I can't find out where.  I had somehow managed to muster my strength enough to fix my problems, but god forbid I would take notes or use the information to help anyone else.  I was too wrapped up in my own misery, so for that I apologise to all my readers.

But I do remember the underlying theory.  Basically, pain has a memory which sits either in the brain or the nervous system.  The more you experience a type of pain the stronger that memory becomes, and every time that memory is triggered you can feel pain which can be almost as intense as the real pain originally experienced.  To me this made perfect sense and was a theory worth exploring.  It explained why I was feeling pain and why the doctors couldn't explain it.  So how do I treat it?

The author then went on to explain that for every memory there was a trigger that fired it off.  That trigger could be anything.  Stress, anxiety, a smell, certain foods etc.  Basically, it could be anything, the important thing was to identify it.  So every time I felt pain (which was nearly ever day) I had to think about what I had done the hour or two prior so I could identify the trigger.

Personally I identified two triggers.  First, if I ever felt a little dehydrated, and second anxiety, which was really a negative spiral.  I got anxious, I would feel pain, so I would get more anxious.....  I now was fairly certain I had identified my triggers, now I needed to find out what to do next.

Apparently for every 'on' trigger, there was also an 'off' trigger.  Now I just had to figure out what that was.  Normally the off trigger was something similar to the on trigger, so I started to have a glass of water every time I was a little dehydrated and I felt the pain coming on.  And you know what, it worked.  But it did not help with the anxiety.  Occasionally I would get anxious about having another stone and hey presto! Back came the pain.

Finding a trigger for that was a little harder, so I ended up seeing a hypnotherapist.  I don't know exactly how she did it but at the start I told her the problem and then she got me to sit in a chair and....  Well I'm not sure really.  I remember I felt like I was in that slumber just before you fall asleep where I was still vaguely conscious.  She asked a bunch of questions but I have no idea what about.

After it was over, I felt no different, and I really thought the exercise had been a waste of time.  However, a couple of weeks later I noticed that I had had no pain.  I still felt anxiety from time to time, but funnily enough not with kidney stones.  Every time I thought about stones the problem seemed exceptionally manageable.  She had not given me an off switch, she had done one better, removed the on switch!

This worked for me.  I'm not saying it will necessarily work for you, but it is harmless and if you are scratching your head it might be worth a try.  Step by step this is how it works.

  1. Identify your pain.  Describe it to yourself.
  2. Rule out physiological reasons for the pain.
  3. If no physiological reason identifiable, look for your on trigger.
  4. Once you have found it, try to identify your off switch.
  5. If necessary, repeat steps 3 and 4.
So the doctors were right.  It was all in my head.  But they were also wrong.  As Morpheus said in the Matrix, "Your mind makes it real".  The pain I felt was as debilitating and nasty as nearly any other pain I felt.  It needed to be treated, not ignored.  Luckily, I found a solution that worked for me.  If you suffer chronic pain I hope you find a solution that works for you too.  Stay well:)

Inspiring

When I was 20 a t-shirt like this would have simply made me cringe.  My attitude was extremely close minded, and although I was battling my own demons at the time I still had no empathy.  To tell the truth, I am almost embarrassed about the way I felt.

Now, is a different story though.  I am genuinely moved by this.  Over the last few years I have met a lot of people with one illness or another, and one thing that remains constant is the courage and stoic persistence they have to battle their problems, and maintain a positive attitude towards life.

To me, it is both motivational and inspirational.  I feed off their strength and courage, and in return, I hope they can feed off mine.  The t-shirt was created to raise money and awareness for multiple sclerosis.  I have attached a picture of it below, and if you desire, you can purchase it at the following address: MSmagnet

Stay well:)

Thursday, November 24, 2011

Calm Down.

I have just read through my last couple of posts and although I wouldn't change them because that is how I felt at the time and for the most part still feel now.  However, I did take a big swipe at my doctor and doctors in general, and I do think that was a little harsh.

When it comes to my neurologist I have no doubt that every decision she makes, she makes in the best interest of her patient.  But I don't think she really understand how much time I have spent researching this, how much time I have spent thinking about this.  I know it is a long hard process.  I know I might come out worse than when I went in.  I know it might not work.  I know I might even die.

I know the statistics.  I know all about the procedure and yet I still want to do it, and I think that should be my choice to make.  After all, I could go and do many stupid and dangerous things if I wanted to and not need sign off by anyone.  I could go base jumping, swim with hungry sharks or play chicken with a brown snake.  If I wanted to be really stupid and dangerous I could even start an argument with my wife;)

My point is that for everything dangerous there is normally a reward or potential of reward.  And normally there is no one there to stop you.  So my point is if I am informed and willing, why can't I?  Stay well:

A new day

Yes today is a new day.  And after a swim and a hearty breakfast I feel ready to take on the world!  Yesterday was a bad day, but today I am revitalised and rejuvenated.  So kids, buckle up and fasten your seat belts because next the next bout in our entertaining series is:

ANDREW PRICE Vs. MEDICINE (round 4658)

And it got off to a flyer with a referral to the new neurologist in hand by 9.00am.  Faxed new referral to new neurologist and called for an appointment.  CRASH!  All referrals need to be reviewed by the doctor before appointments can be made.  Well never mind, the poor receptionist is going to hear from me every day until I have an appointment.

On the brighter side, yes, I didn't get very good news about my health, but I got great news from the other side of the world.  I became an uncle!  My brother had his first child yesterday and I am really happy for them all.  Mum and bub both doing well.  Welcome to the world little Johnny, I'm really looking forward to meeting you.

Movember Update 2

Me thinks someone might be cheating?  Tyyyyyyyyysonnnnnnnnn!!!!!


Wednesday, November 23, 2011

Where to from here?

I just got a message asking me if I was going to be OK and what am I going to do?  Well, I have to say that I'm still a little angry.  Especially when I read that the first SCT was done on a non-cancer patient in 1968, and it has taken them over 30 years to look at doing this for auto-immune diseases.  So why so long?  There is no money in the cured, but there is in the living sick.  If the research had been pioneered twenty years ago, we might already be done with the trials and moved on to a working treatment by now.

Anyway, I digress and I sound really bitter.  But I will be OK, and where to from here?  Well first I will employ what I call the Tiger Woods ten steps technique.  No, get your mind out the gutter.  I'm not referring to his sex addiction.   The late Earl Woods told Tiger that if he played a bad shot he was allowed to be angry for ten steps.  After then he had to get it back together and focus on his next shot.

For me, it is OK for me to be upset.  But I'll give myself until the end of the day to be like then, and tomorrow I'll refocus and reengage.  As for tomorrow?  Well, I haven't been told no.  This is more of a speed bump.  And what could I expect really?  A ticket to Chicago and an all expenses stay at North Western hospital?  Not quite.

So tomorrow, my first steps will be to contact North Western and let them know the state of play and then go and see my GP for a referral to the new neurologist so I can get in before Christmas. Aside from that I will keep reminding myself I am strong, I am resilient and I will find a way.  Until next time, stay well:)

I Feel Like I'm in Purgatory.

Sometimes I feel for all their knowledge, doctors don't get one very important fact.  How the patient really feels.  My doctor did entertain the fact that I did want to actively explore the option of a stem cell transplant, BUT, why do feel like I am getting the medical ring around.  She raised genuine concerns which is fair enough, but I like to think that I am an educated, well informed and rational person and I should be able to make my own decisions.

I get that there is a chance of mortality.  I get that there is a chance of morbidity.  I get that it might not work.  But I am still willing to try, and if it doesn't work, at least I'll know, and at least I will have tried.  Waiting, doing nothing makes me feel like I'm in purgatory, not going up, not going down.  Unknown, undecided.

All I know is right now I have to live with this disease all day every day.  It does not take a holiday, it doesn't even take a tea break, and this is what doctors don't understand.  They see you for 15 minutes every six months and then it is on to the next patient, meanwhile we the sick, fight and struggle through our everyday lives.

The other problem I may have is that, get this, "I may not be sick enough".  Seriously, I don't understand. I compared my nerve conduction studies to a patient that underwent SCT and has results published.  They are strikingly similar.  I do my very best to stay active and exercise in order to maintain my muscle mass and retain my ability to function independently.

Just so you know I swim twice a week, train with a PT who works on my balance and co-ordination as well as fitness and I practice yoga.  It is a fine line though.  Too much exercise and I cramp up and can barely walk, not enough and my muscles start atrophying.  Maybe I should give it all up, deteriorate rapidly and then be sick enough to qualify.  The other thing that could happen is I have an accident.

I value my independence and I am very proud.  My wife keeps nagging me to use a walking stick everywhere I go, and I have only just relented.  But my pride and value of independence makes me a high risk of having an accident.  At the moment I am accidentally falling over once or twice a week.  Luckily, I have so far evaded injury, but I think it is only a matter of time.

So, where to from here?  My neurologist has referred me to another neurologist for a second opinion.  I can't book an appointment with him until the referral gets to him which won't be for two weeks!  That means that I won't get an appointment until next year.  Luckily, I know a guy who is quite adept in manipulating the medical system to his own personal gain;)

As for me, do I self destruct to guarantee I meet the study criteria or do I keep trying to do the best I can.  Well, I have pretty much conquered my depression and I am a proud man.  Self destruction is not in my nature.  However, right now is the lowest I have felt in about a year.  I am feeling bitter and angry.  I have no answer on whether I qualify and no date set for anything, not even an appointment.  Welcome to medical limbo.  Welcome to purgatory.

Tuesday, November 22, 2011

Neuro Appointment

Tomorrow I go and see my neurologist.  She is smart, brilliant, patient orientated and just an all round great doctor and lovely person.  However, in the past her opinion (which I value greatly) has sometimes been a little conservative.  And I need her blessing and referral to take part in a dangerous, experimental, autologous stem cell transplant trial.  Do you see my problem here?

So, what to do?  I could find another doctor, but I think that is a bad idea seeing as though I am so happy with the one I've got.  I could ask my GP to refer, but he probably wouldn't have all the necessary skills.  For now I am left with my current neurologist which is OK because as I said, she is a great doctor.

Right now I have one option.  Convince her that this is the right thing to do.  That this is my best option and I am 100% committed to doing this.  And I am.  I have a similar thought process to how I tackled my brain surgery.  That is, if I had it and it didn't work sure I would be disappointed, but the thought of not having it and not knowing if it worked would be worse.  The treatment is there, I know it is there and I want it.

The other argument I get is what if something went wrong?  You have a young family and so much to lose.  Yes, but on the flip side, I have so much to gain also.  I want to dance with my daughter, kick the footy around with my son.  I wished I could have taught them both how to ride a bike, but I missed the boat on that one.  That was hard.  Really hard.

My first weapon will be to use these arguments, secondly, I need to come prepared with results and facts that prove this is the right course of treatment for me, and right now that is what I am going to do.  Stop blogging and mindlessly surfing the internet and start preparing.  Until next time, stay well:)

A funny bone.

I borrowed this from someone in the cystinuria support group on face book.  Enjoy:)


Sunday, November 20, 2011

The Stem Cell Debate


If you asked me about my opinion on stem cells six months ago I would have given you a luke warm politically correct answer that would have hinted on my thoughts, but would have done so in a way that would certainly not have stimulated a firey debate.  Why?  Because I really did not prioritise it as one of my most important issues.

However, since stem cells have become a hot topic for me personally, the issue has stepped up in my view.  Now the hot topic that everyone is talking about is embryonic stem cell research.  Just to clarify, the procedure I am having is an adult autologous hematopoietic stem cell transplant.  Hematopoietic meaning from the blood, adult meaning from an adult donor and autologous meaning donating to myself.  The reason I tell you this is so you know that I do not stand to benefit directly from an embryonic stem cell transplant.

I'll start by making two statements.  First, incase you haven't guessed, I am an supporter of embryonic stem cell research.  Second, I really hope to get your opinions on the subject, especially if you are anti embryonic stem cell research, because it is only through debate that we can move forward with the issue.

As always, this post is becoming much larger than I suspected so I am just going to give you one argument.  Is the source of an embryonic stem cell part of a life form?  There are many definitions of life, from the theological to the biological.  Depending on what you believe will influence on your definition.

Embryonic stem cells are extracted from blastocysts which is a structure formed in the early stages of embryogenesis. The blastocysts we would use are formed in vitro (outside of the womb) and therefore cannot grow into a foetus in their current environment.  As the cells involved are yet to grow into their final tissue, there is no brain or nerves.  Therefore they cannot think or feel.  So they are not life, just the potential to be life.

Every ovum is the the potential be life, so is every sperm.  Does that mean that every unused sperm and ovum is destruction of life?  I guess it all comes down to where you draw the line of where life begins.  For me, it is when one can think or feel.

As I stated earlier,  I will welcome your arguments on both sides of the debate.  All I ask is that you keep it civil.  Until next time, stay well:)

Kidney Stone Funny. Again.

In a way it's hard having kidney stones.  They are the brunt of more than their fair share of medical humour.  But that is a good thing.  If you can laugh about your condition it can make it a little easier to deal with, and I for one have had many a laugh about my stones.  When I was at university my friends used to joke about them all the time.  And that was OK, I enjoyed the humour, and it was my friends that looked after me when I was sick.

Anyway, here is my latest instalment of kidney stone humour.  Luckily, it is still making me laugh.  I hope it does the same for you.  Stay well:)

Saturday, November 19, 2011

More on stem cells

Yeah, I get it.  It's a PR movie for adult autologous stem cell transplantation.  I've worked in advertising for a long time, so I know all about it, but as a potential recipient of an SCT I have to say I am very excited.

Funny Funny. Ha Ha!


Friday, November 18, 2011

Stem Cell Transplant

About three weeks ago I mentioned the possibility of having an adult autologous stem cell transplant,  Since then I have been researching it thoroughly and I'm amazed not more has been done to promote this treatment further.  Doctors do not like to use the word cured, but to all intents and purposes people with auto immune diseases have been "cured".

Below are two links to trials of stem cell transplants for people who have had an auto immune disease.

Systemic Sclerosis
Lupus

The results are amazing.  Everyone treated with stem cells showed improvement.  Generally, auto immune diseases are degenerative, so to see improvement in 100% of patients is wonderful achievement.  In terms of CIDP, I have read many blogs and accounts of people who have had the procedure, and all have reported improvement, some have even said they are cured.

So, what is the catch?  First, it is dangerous.  In order for the stem cells to take a patient has to be completely neutropenic (no immune system at all).  This is achieved with high dose chemotherapy.  With a weakened body due to chemo and no immune system, one is highly susceptible to infection.

Second, it is expensive.  In order for me to have the treatment I have to pay about $150,000 to $200,000.  This is a problem that means that a number of people cannot have the procedure simply because they can't afford it.

However, the more I think about it the more I think that it is the only option.  If I can get accepted into the trial I will find the money to go.  To me it is a no brainer.  If I had to live with this disease I could, but if I don't have to I won't, and I am prepared to take big risks to achieve that.  Stay well:)

Thursday, November 17, 2011

Movember update

Oh my,  I think old Dirty Flynn(aka. Tyson aaka. T Bagger) has multi-personality disorder.  He hhas gone from service station robber to sleazy porn star in less than a week!



Depression funny

I found this cartoon funny because it would have been the sort of thing I used to do.  The only problem with this is the longer you leave it, the bigger the issue becomes and the greater the stress.  Enjoy and stay well:)


Wednesday, November 16, 2011

Depression Control

Depression can reoccur.  Does that worry me?  Absolutely.  But I have been given the tools to identify if things are going backwards for me, and what to do if they are. Thankfully, things have not headed in that direction yet, and I guess the real test will come if and when they do.

So how do I identify if my depression is returning.  When I first started getting symptoms many years ago I had no idea what was happening.  My biggest weapon in identifying a relapse is awareness.  I know what it looks like and I know what it feels like, but I also have to be wary of false indications.

In my post titled Finished Up, I touched on this, as after my IVIg treatment I felt awful, but this did pass.  Sometimes you're just going to have a bad day.  What needs to be done is differentiating between a bad day and a relapse.  For me the sighs are:-


  1. Having negative emotions (anger, anxiety, sadness) for three days or more.
  2. Waking up in a bad mood.
  3. Withdrawing myself from social situations.
  4. Procrastinating about things I have to do.
  5. Not doing things I would normally want to do.
If any of these things are occurring, I have to stop and ask why.  If the reason is isolated I can deal with that and move on.  If it is bigger I can utilise the following tools to help:-

  1. Think positive.  What we think effects the way we feel, and the way we feel effects the way we think.  I is very hard to change are emotional state, but we can change the way we think.  This allows us to reverse the trend and put us back in the right direction.
  2. Make sure that any issues both now and in the near future are dealt with now.  Waiting, will only allow them to fester and breed negativity.
  3. Remind myself of my achievements.  This allows me to feel useful.  This blog for example, allows me to feel productive and useful.
  4. Go and see my psychologist.  If I can't figure it out by myself, I know I can always go and get some help.
Well that almost wraps it up now for me and depression.  There will be a couple more posts on the subject, but I will leave the exact nature of those a mystery.  Until next time, stay well:)

If you think you may be suffering from depression, go and see your GP.  They will be able to assess you and point you in the right direction to get help.  If you don't feel ready to see someone yet, type "depression help" into google and that will give you a list of resources you can use for help.  In Australia, Beyond Blue is a great place to start.  There website is:-

www.beyondblue.org.au

Tuesday, November 15, 2011

Depression Gone

It was a long road, I think in all I was suffering from depression for about eight to ten years, five of those I was just trying to get myself better, something I feel I have only just achieved.  In brief, I did it by following the following steps:

  1. Identifying the problem.  For so long I didn't realise I had a problem.  Once it had been identified and diagnosed the depression felt more tangible and solvable.
  2. Get help.  In the fine words of Bono, "Sometimes you can't make it on your own." That is so true for people suffering depression.  It's OK to ask for help.  Everyone needs help at some point in their lives.
  3. Anti-depressants.  They are not the answer but they do help and assist you in getting to the next step.
  4. Validate your feelings.  It's OK to feel the way you feel.  Once you have acknowledged this and validated it you can move on to dealing with it.
  5. Rectify past mistakes.  For me certain things I did, or more accurately did not do, were hanging over me like the sword of Damocles.  I was never going to finally conquer my depression until I had sorted them out.
I guess the question is "Am I cured?"  That is an extremely difficult question that can't be answered with a simple yes or no.  Depression is not a switch with an on off button.  It is measured on multiple scales, which makes it extremely hard to evaluate.  So, am I cured?  I am a great deal better than what I was, and if you were after a medical term I think that they would say I was in remission.

Which leads to another question.  Could I relapse?  The answer to this one is much more simple. Yes, absolutely, and it worries me.  Looking back it is somewhere I don't ever want to be again.  But it could happen.  It is not like one day I will just take a wrong turn, I would just simply be there and again I would have this horrendous mountain to climb.  

So what can I do about it?  Well luckily there is a point six.  Tools for identifying a relapse and rectifying it early.  But that is the post for next time.  Until then, stay well:)

If you think you may be suffering from depression, go and see your GP.  They will be able to assess you and point you in the right direction to get help.  If you don't feel ready to see someone yet, type "depression help" into google and that will give you a list of resources you can use for help.  In Australia, Beyond Blue is a great place to start.  There website is:-

www.beyondblue.org.au

Monday, November 14, 2011

Shakes, Stones and Shady Mo's

A friend of mine is doing Movember.  To tell you the truth it makes me feel kind of guilty because it is two brilliant causes that I really believe in and I'm not doing it.  See the links Below:-

Prostate Cancer Foundation of Australia

and

Beyond Blue

So I think apart from growing my own mo the best thing I can do is promote old Dirty Flynn (aka. Tyson Sheean).  Please don't let the fact he looks like he just knocked over a gas station dissuade you from donating, he is really a nice guy.

His page is linked below:-

Dirty Flynn



If anyone else wants to show off there movember page, just put the link in a comment for this post or send me a message and I'll do it for you.  Stay well:)

Depression Continued.

During my depression I made a lot of mistakes.  It was not so much with the things I did, but with what I failed to do.  In a way, dealing with the medical problems was easier.  I had little control over the problems that I was confronted with medically, but the other problems I had created by my failure to do what was necessary.

Since 2002 I had been running my own business.  With that comes certain responsibilities.  Responsibilities that I had to fulfil.  To run a successful business you have to work hard and be proactive. To run a business there is a bare minimum that you have to do.  I was doing less than that.

It could have been viewed as me being greedy or selfish.  The truth was that in reality nobody was hurting more than me.  If you told me in 2002 that I would be in this situation, I would have laughed at you.  But in that moment where work had to be done and decisions had to be made, I would pick up the edge of the carpet, shovel everything under there, walk outside and bury my head in the sand.  For five minutes I would feel better.  Inside my head my problems would disappear, but hen they returned they would be worse and harder to deal with.

It was not a good space to be in.  I felt tremendous amounts of anxiety and guilt, and I had felt like I had let a lot of people down.  But it came time to deal with it all.  I realised at the time that I could not deal with my medical problems and run a business.  My medical problems weren't going to step aside, so I had to take a leave of absence from my business.

I order to do that I had to let a couple of people in on the problems I had created.  This was extremely hard.  I was embarrassed and guilty and the people I confided in were really great.  I couldn't have blamed them if slowly but surely they left, but they didn't.  Instead they helped me deal with it.  I was really surprised, but also extremely grateful.

As it stands now, I have a very solid business.  The problems I faced although tough have been dealt with, and although I am still not involved with the business on an operational level, I am still very proud.  I started it, I created it, I moulded it into the company it is today, and although it was others who took it that final step, I set the foundation.  I am also no longer guilty about where we are positioned.  We are strong, healthy and moving forward.

Next time I will talk about where I am at now and what tools I have to stop me falling backwards.  Until then, stay well:)

If you think you may be suffering from depression, go and see your GP.  They will be able to assess you and point you in the right direction to get help.  If you don't feel ready to see someone yet, type "depression help" into google and that will give you a list of resources you can use for help.  In Australia, Beyond Blue is a great place to start.  There website is:-

www.beyondblue.org.au

Sunday, November 13, 2011

Inner Strength

This is a little quote I pulled off the CIDP forum, and is something I keep telling myself when I'm researching stem cell transplantation.  It is really relevant in many other areas of life too.  Stay well:)


Milestones Ahoy!

I have to say that I am really enjoying writing my blog.  Personally I find it very therapeutic and rewarding and I really hope that you people out there are deriving some benefit or learning something from it.  Would love to hear what you think!

I have just passed the 3000 page views mark, I have 24 followers and this is now my 117th post!  Also, my technorati authority is up to 107, (ranked 26741) and my technorati health authority is up to 89 (ranked 2472).

Also 900 of my page views have been in the last month.  I will continue to write everyday for the foreseeable future.  Don't worry, I have plenty to say.  Stay Well:)

Saturday, November 12, 2011

Depression Smack Down!


When I last posted to you, I had just felt like I had really made some headway tackling my depression.  I had taken myself to a point where things actually started to feel possible.  I had issues that needed addressing, and now I was in a space where that was possible.  If I had tried to skip straight to this point I would have failed and probably ended up in a worse spot.

Every step I made I did in consultation with my psychologist.  We discussed each step, what I needed to do, how I was going to do it, when I was going to do it by, what my expectations were, and most importantly, what I would do and feel if it didn't go as planned.

The first things I needed to address were my medical issues.  Be proactive not reactive.  I had three major issues that I needed to counter. Kidney stones, CIDP and tremor.  In terms of my battle with cystinuria and kidney stones I had been losing the battle for a long time.  Throughout my 20's I hadn't really been very good at looking for a medical solution.  If I wasn't symptomatic, I would pretend I didn't have a problem and carry on living my life normally.  If I was symptomatic I would get my stones dealt with surgically.

Truth be know, in my late teens and early 20's this actually worked quite well.  When I was not symptomatic I could go about my business as a regular uni student, and when I was symptomatic I had the time to go and have surgery and my young fit and healthy body would recover well and quickly.

However, when I got older, time was more precious and the surgery took more of a toll on me until I finally had my mega hospital stay in 2006.  Something had to change.  I organised to see a different nephrologist, who I liked and respected a whole lot more, and instructions I was much more likely to follow.  I also went and got hypnotised to help me drink more water.

With a metabolic disorder like cystinuria, you are never going to get rid of the stones completely, but I went 3 years after then without one stone!  Something I hadn't done since my first stone in 1994.  Next, I set my sights on CIDP.

I was extremely focused on getting better, but I had tried nearly every known treatment there was already, so where to from here?  My answer was to hit the disease with multiple treatments all at the same time.  I had in the past been treated by IVIG, plasmapherisis and mycophenalate, but never all at the same time.  So that is where we headed.  

Unfortunately, that didn't work, and in the past it would have wrecked me, but with my counselling I had prepared myself for that eventuality.  I was disappointed, but I could carry on.  But there is hope, as I have been researching the possibility of an autologous stem cell transplant.  But that is another story for another time.

Lastly, I had to combat my tremor, and since I was hitting it hard, it was time for the deep brain stimulation surgery.  There was an element of fear, but I realised that it was something I had to do.  I was done with my diseases dictating my life, I was in charge and I was going to have the surgery.  I have blogged about this surgery extensively, but if you haven't read it before, it went great.  In contrast to the CIDP, where I didn't let the bad news set me back, I certainly let the good news from this surgery carry me forward.  For the first time in a long time I had experienced the joy that came with success and triumph.  Positive emotions rock!


If you think you may be suffering from depression, go and see your GP.  They will be able to assess you and point you in the right direction to get help.  If you don't feel ready to see someone yet, type "depression help" into google and that will give you a list of resources you can use for help.  In Australia, Beyond Blue is a great place to start.  There website is:-

www.beyondblue.org.au

Next time, I will talk about all the other issue that I had to confront and face as part of my depression recovery.  Until then, stay well:)

Friday, November 11, 2011

Finished Up

It's ironic that my treatment post comes at the same time I am blogging about depression. Why? I hear you say. Well now my treatment is over I can safely say I feel like crap, and my symptoms are depression like. All I want to do is go to bed, shut off the world and sleep. Everyone can just go away and leave me alone. Well, bring me chocolate and then leave me alone.

The question is should I be worried? And the answer quite simply is no. During my therapy I learnt skills that allow me to identify whether I am slipping back, or whether I am just having a bad day. This is the latter. I can tell for two reasons. First, I have dragged my sorry arse out of bed long enough to write this post, and second and more importantly, I feel like this every month, which would indicate to me that it is temporary and will pass.

If I still feel like this in three days, I will know I have a problem. Until next time, stay well:)

Thursday, November 10, 2011

My Monthly Dose of Boring

Anyone with CIDP, or any autoimmune disease that requires Intravenous Immunoglobulin (IVIG) infusions will know that there is really not that much to look forward to.  Just to let you know what it is like, you sit in one of those comfortable hospital recliners while a nurse sticks you with an IV and you sit there all day whilst watching the drip, drip, drip of the IVIG as it is slowly infused into your body over six hours.

I was hoping to write this post whilst I was in the chair, but I cannot move the hand that the IV is located in and typing with one hand is too hard.  Unfortunately, with my poor venous access and the viscosity of the IVIG, even the slightest movement sends the iMed machine into distress so the nurse has to come and fix it.

Yes, the process is boring.  Yes, it is long.  Yes, you do feel like crap afterwards and yes, that day for me is tomorrow.  I feel as if I have started this post off on a really negative note, but two things.  First, it is not all bad.  Second, there are things you can do to limit the boredom. Now there are not many people who have IVIG, but there are many people who have lengthy infusion treatments, and this should go a long way to helping them too.

Firstly, decent preparation.  I find that if I have got the body going and the heart pumping a bit before I get to the hospital.  If this is the case, I find that my veins are bigger which makes it easier for the nurse to put in the IV and less likely to have problems during the infusion.  So on IVIG mornings I like to get up and do a bit of exercise (for me, either a session with my personal trainer, or a swim.)  I like a big breakfast and lots of fluids to up the blood volume and vein size.  Lastly I pump a stress ball all the way to hospital to really get the veins up.  It is also important to stay warm so your veins don't shrink inside your arms.

Secondly, combating the boredom.  Yes, six hours of nothing is really boring, and seeing as I can't use one arm I keep myself from getting bored by watching movies.  Right now I am downloading three movies onto my computer for tomorrow.  I bet you wish you knew what they were, but I'm not telling;)
I also sleep sometimes, read a book, or talk to the other patients.

Thirdly, the nausea.  Although I have never actually been sick I have still felt nauseated.  I find a simple remedy for this is to keep snacking.  The hospital supplies a never ending supply of cheese and crackers, so I am always eating them.  I used to bring a big bag of M and M's with me but they used to only last 20 minutes plus the nurses used to eat them.

Fourthly, the headache.  Nasty headaches are a side effect of IVIG, and prevention is the best cure.  IVIG pushes up your blood volume, which increases your blood pressure.  Your body combats this by expelling water, causing dehydration.  Blood pressure plus dehydration equals headache.  To combat this, drink plenty of water, take pain relief (neurofen works best for me) and if all elso fails ask the doctor for a script of blood pressure meds, a beta blocker like inderal works best.

Lastly, a couple of general pieces of advice.  Get someone to drive you or catch a cab.  There is a good chance you won't feel like driving home. Second, be nice to the nurses.  They do a great job and do the best they can.  If you are not nice to them they will not be nice back to you.  If I feel up to it I willl let you know how it went tomorrow.  Until then, stay well:)

More funny!

Who says sick people don't have a sense of humour.  The humour here is rather dark but funny none the less.  Chronic kidney stone sufferers are often labeled as drug seekers even though they are simply in pain. Some for months at a time.  I guess this cartoon (which I took of a cystinuria forum) parodies that.


When I lived in Sydney I had a really bad stone that landed me in emergency.  I was at St Vincent's Hospital in Sydney, which is right next door to Kings Cross, the drug capitol of Australia.  As you could imagine, they have their fair share of bona fide drug seekers, so what they do is they make you wait an hour.  If you are still there after this time, you are probably legitimate, which is no fun if you fall into this category.  I hope you enjoy the cartoon.  Stay well:)



Wednesday, November 9, 2011

I'm Back!

I was going to call this post 'Back to Normal'.  But what is normal?  For a while my normal was feeling depressed and all the baggage that came with that, so I've just gone with 'I'm back!'  Back from that nasty place from which I don't ever want to return.  Also in terms of our emotional constant, our normal is forever changing.  My normal from ten years ago (the last time I could be sure I wasn't suffering from depression) is different today.  So I'll simply say I'm Back! Back experiencing positive emotions, back feeling useful and productive.

But the question remains how did I get here?  In my post titled "Not so Silent, Not so Deadly", I commented on how I had made baby steps to solve my problem.  But they weren't really baby steps as much as one big step.  And that was creating a foundation for myself to tackle my depression.  I had talked to my doctors and was receiving professional help.  I was on anti-depressants which although weren't the answer, stopped me from reaching the punishing lows I had once experienced, and I had made mistakes which allowed me to see which direction not to go in.

So, where to from here?  I realised that I still needed help, so it was back to the GP.  This time he referred me to a different psychologist, but I realised that I had to make the change.  I had to be completely honest with my new psychologist, and not leave anything out.  That was a really tough thing to do.  I have always found it hard to open up to even the people closest to me, let alone a complete stranger, so I kicked off my first consult by letting her know this little conundrum I faced.  As insignificant as that seems, I had started to let my guard down, which lead to open honesty and a path to correcting my problem.

That first consult also marked a huge point in my treatment.  We talked about how I felt about all my medical problems.  I felt ripped off, like I'd been robbed, and inside I was upset and angry.  I had never shared this with anyone because I didn't want to be branded a whinger, or burden my problems with people who clearly would prioritise their own issues and would not want to hear mine.

So there I was, laying it all out on the table.  For me it was not the talking about it that really helped.  It was the unexpected response I got.  I was expecting a response like "Suck it up! Its the lot you were given you just have to deal with it." Or, "It's not so bad, think about all the people in the world worse off than you."

Instead, what I got was complete validation of how I felt.  Total and unconditional validation.  For the first time I felt justified in the way I felt and all of a sudden it didn't feel so bad anymore.  Instead I felt strangely calm.  The relief was the first real positive emotion I had felt in a long time.  It proved to me that I could get back.  I felt like I did not just have to fight the fight, but I wanted to.  What is more, I wanted to win.

Next time, I will talk about the battles I had to fight and how it all unravelled.  It was still a long road, but personally, a rich and fulfilling journey.  Until then, stay well:)

If you think you may be suffering from depression, go and see your GP.  They will be able to assess you and point you in the right direction to get help.  If you don't feel ready to see someone yet, type "depression help" into google and that will give you a list of resources you can use for help.  In Australia, Beyond Blue is a great place to start.  There website is:-

www.beyondblue.org.au

Monday, November 7, 2011

Not so Silent, not so Deadly.

In 2006, I finally had an unofficial diagnosis from my neurologist, and she referred me to a psychiatrist for an official diagnosis and treatment.  Realistically my recovery started then.  Just knowing that it wasn't normal to feel this way, and that I wasn't alone, and that there were treatments available.  It was a really important step.  It got me off rock bottom and the strength to go a little bit further.

However, I then stagnated for a bit.  I went and saw the psychiatrist, and I have to say he wasn't much help to me.  His appointments were only fifteen minutes long, and his initial diagnosis came from a questionnaire I filled more than the actual consultation.  After that his only recommendation was anti-depressants.  I resisted the treatment partly because I didn't like him and also because I felt (and wrongly so) that the only people on these drugs were psycho cat ladies and suicidal teenagers.

Eventually I relented though and lucky thing too as the anti-depressants were an integral part of my recovery.  But the drugs were by no means a cure.  They stopped me from feeling the dark, dark lows, but they didn't make me feel good.  I was still lethargic and procrastinated a lot, and I certainly wasn't looking forward to anything, no matter how much fun it was.

Realising I wasn't going anywhere I decided to talk with my GP.  From here, he took over my treatment from a medication point of view, and referred me to a psychologist who would treat me therapeutically.  This was a positive step for me as I was starting to take charge of my own treatment, but I still had the line share of the work to do.

In hindsight I don't think I was ready to see a psychologist, but I needed to do it anyway.  I think I needed time to get used to talking to someone about me, and not just the good parts, but everything.  It was very confronting, and as a result I steered the conversation in areas I didn't mind talking about and ended just telling him what I thought he wanted to hear.  Looking back it seems like a colossal waste of time, but realistically, it was a very important step.

Eventually I stopped seeing him and I went for a follow up consultation with my GP. After that, things really started to get interesting and better, and although I hate to keep you all in suspense that story is for my next post.  Until then, stay well:)

If you think you may be suffering from depression, go and see your GP.  They will be able to assess you and point you in the right direction to get help.  If you don't feel ready to see someone yet, type "depression help" into google and that will give you a list of resources you can use for help.  In Australia, Beyond Blue is a great place to start for help.  There website is:-

www.beyondblue.org.au

Sunday, November 6, 2011

My Symptoms of Depression

There are many symptoms of depression.  As is the case with many diseases, no two people have quite the same set of symptoms.  But these are the ones I felt as I continued down the track.

One of the first symptoms I felt was anger, but it was very closeted.  For example, driving to and from work I would get really angry with other drivers, and I would shout and yell at them.  As long as they could not see or hear me  I didn't mind.

I became quite withdrawn.  Unless I had to do something or go somewhere I would stay at home, and I would actively minimise my calendar so I had less to do.  However, I actively encouraged my wife and kids to go out so I could spend time by myself.

I would get frustrated by anything.  The tremor didn't help.  I would get so annoyed if I did something trivial like mess up tying my shoe laces.  I was not the fact that these things were harder with tremor and CIDP, but because I let them get to me.

Procrastination and avoidance.  If I had something to do I would put it off for as long as possible, and if I could manage it not do it at all.  Sometimes I would leave something so long, eventually someone else would do it which would be exactly what I wanted.  However, instead of thanking them, I would have a go at them stating I was going to do that!  Avoiding certain issues nearly got me into a whole world of trouble.  This trouble would only serve to make things worse for me, as they say, a spiral of depression.

During this period I also felt emotionally numb, but only when it came to positive emotions.  I remember a time about three years ago, I took the family to the UK for a family wedding and a holiday.  And what did I think and feel.  All I thought about was the effort and hassle of plane travel and dealing with tired and cranky kids.  As a result I felt tired and cranky too, not excited, happy and enthusiastic like I should have been.

Because of all of the above there is an overriding sense of guilt.  I was not the person I expected myself to be and I also felt that I had let everyone down.  Coupled with the fact that I wouldn't let anyone else in meant I had to shoulder all of this by myself.

I still feel like these problems still surface from time to time.  The important thing is now I have the skills to identify them and the tools to deal with them.  But that is another post for another time.  Until then, stay well:)


If you think you may be suffering from depression, go and see your GP.  They will be able to assess you and point you in the right direction to get help.  If you don't feel ready to see someone yet, type "depression help" into google and that will give you a list of resources you can use for help.  In Australia, Beyond Blue is a great place to start for help.  There website is:-

www.beyondblue.org.au

Friday, November 4, 2011

It was too good to be true!

Just when I thought everything yesterday ran like clockwork, it did all come crashing down today when I got a call from the x-ray lab to say I need to pick my CT scan results up as they won't post them......  Oh well, I guess that is an hour of my life I won't get back on Monday, lol.  Stay well:)

Busy day.

I had three medical appointments today, and I have to say I feel like I'm in the twilight zone.  Why? I hear you ask.  Well, I didn't have to wait more than five minutes to see any of them!  The other point to note is that none of them were bad, which is becoming more common as I grow in confidence and get on the front foot with my treatments.

I started out with my tremor doc.  A week ago I would have thought I had pretty much reached the end of the road in terms of what my stimulator was capable of.  I was wrong.  I had an adjustment and although the improvement was only minor, it was still an improvement.  So, I am now thinking how much more can I get out of this.  I guess that only time will tell.

While I was there we talked about stem cell transplantation and other drugs for CIDP.  It was good to get his feedback and opinion even if as I suspected he was not well versed on the subject.  His thoughts were that I was extremely knowledgeable about the subject and that any doctor would have to take my wishes into account.

After that I went and had a chat with my chemist.  I wanted to get her thoughts on rituximab, and we ended up chatting for about half an hour.  One problem that I overlooked about the drug was that it is insanely expensive.  About $3500 a treatment, and is not covered by the PBS.  So if I can't get on a trial, or get a pharmaceutical company or hospital to pay for it, it is probably not going to happen.

After that I had to run off to the mercy hospital to have a 'stealth' CT scan.  Stealth is basically a way that they can superimpose the images of the CT scan over the top of my old MRI scans from a year and a half ago to check the lead placements from my DBS surgery.  I had to question the relevance.  Seeing as everything is working really well, surely the leads are in a good spot?  Anyway, I had the scan, and I'm sure if something is wrong, they will call me.

Lastly, it was off to the physio for a bit of neck work, which felt great.  All in all I feel it was a good day for me from a medical point of view.  Until next time, stay well:)

Wednesday, November 2, 2011

Silent but Deadly

No, this is not a crass attempt at a fart joke.  It is something really serious.  Something that I have battled with for many years and approximately one in ten adults suffer from, many without knowing.  It is depression.  It has many causes, many manifestations, it hides inside us like a thief in the night, and if left unchecked can have fatal consequences.

As with many of my subjects, my experiences with this are way too big to cover in one post, so stay tuned, it will take a while to cover it all.  I will start with my history with the disease.

I don't know when I officially started to suffer.  It was not like my first kidney stone, which was marked down as the 30th of April 1994 at approximately 11.00am with excruciating pain and a trip to emergency.  It was suddenly just there.

I didn't actually know about it until late 2006 when I had an appointment with my neurologist and she informed me that I might be suffering from depression.  In hindsight the evidence was astoundingly obvious.  But when you are right in the centre of it you can't see past the end of your nose.

I'm sure that I was suffering in May 2006 because during my huge surgery I convinced myself that it was never going to get better and I would spend the rest of my life suffering until I finally died.  I did have suicidal thoughts, my thought process was that if I was going to suffer for ever, why not end it now?  I'm so glad I didn't.

Truth be known, 2006 was simply my lowest point.  I had been sinking for a while, I just didn't know it.  I had this zombie like way of just making it through the day until I could finally retire to bed where I would want to stay for ever.

I think that looking back it was all the bad news I kept getting medically that started it.  All the bad news took up so much of my energy that I began to neglect all the other areas of my life.  Slowly but surely, they then added to the problem.  Before I knew it, it was way more than I could handle.  I guess that is why it is called a spiral of depression.

Reading back through this post I have to admit it does sound pretty depressing, but this is just the start of my story.  It does end well.  Next time, I will talk about the symptoms that I experienced with my depression and then I will talk about my treatment regime. Until then, stay well:)

If you think you may be suffering from depression, go and see your GP.  They will be able to assess you and point you in the right direction to get help.  If you don't feel ready to see someone yet, type "depression help" into google and that will give you a list of resources you can use for help.  In Australia, Beyond Blue is a great place to start for help.  There website is:-

www.beyondblue.org.au

Also funny!

I guess sitcoms are funny because they imitate real life.  This cartoon that I pulled off a CIDP facebook forum really resonated with me.  When I first presented with CIDP, it seemed to take an eternity to get an diagnosis.  Wait for the GP, wait for tests, wait for the GP again, get referral, wait for specialists, wait for more tests etc..... I hope you find it funny too!  Stay well:)


Tuesday, November 1, 2011

Cure for HIV?

Whilst searching the net for information on stem cell transplantation I came across this article.

Stem cells and HIV

Yes, by all accounts this man has been cured of HIV!  However, there is a down side.  Only 1 - 3% of all people of European descent carry the CCR5 delta 32 mutation.  Those people then need to consent to donation and be healthy enough to donate.  Do the math, there are far more people with HIV.  There is also the compatibility issue.

The second point to note is that to put a patient through a very risky and life threatening procedure is unethical, seeing as the quality of life and longevity are almost normal with the anti-viral out on the market now.  As the experts say, "HIV no longer has to be a death sentence".

Still, a cure would be nice.  In this case the patient was treated for leukemia, they just managed to find a transplant donor with the delta 32 mutation, and this gives us a valuable research tool.  We already have drugs that attack individual proteins on the surface of cells.  For example, a drug I am researching for my CIDP, rituximab attacks the protein CD20, hopefully destroying the cells that cause my neuropathy.

So it is probably only a matter of time before they develop a drug to attack CCR5.  Seeing as this article is 2 years old, and the Berlin Patient was treated 4 years ago, that cure may be closer than you think.  Stay Well:)