I have a cure for Addison’s

tui ad(Those of you that are from New Zealand will understand this ad, for others, it’s about the “Yeah Right”.  Basically, it means what is on the left, is a complete fabrication.)

I belong to several on line support groups for Adrenal Insufficiency (Addison’s Disease) to both help others with Adrenal Insufficiency (AI) and to get assistance with questions Derek and I have about AI.

One thing that annoys many who have struggled to get a true diagnosis, and the correct treatment for AI once diagnosed, is the people that post that they had AI, diagnosed by this herbalist, or that naturiopath, or some Dietitian with a Dr in front of their name and even once by a chiropractor. None of these people have access to the correct blood tests for a definitive diagnosis of either SAI or PAI. They then tell everyone how they have had this miraculous cure by neck manipulation, taking this herbal mixture, or that vitamin concoction, or eating this menu of food. They then try to convince those who have the condition, to stop their steroids, take these natural cures, and they will be cured. “Here, read this, it will fix you.”

If you truly believe you have this condition, go to the UK Addison’s Disease Self Help Group for a fantastic resource on how to get diagnosed, and treated.  Some people have difficulty finding a Dr that understands blood tests enough to correctly interpret the results, or that put their symptoms down to anorexia, depression, psychosis etc.

Here I am talking about, those who come in asking about everyone elses symptoms, so they can copy them, to make it sound like they have the condition.

I have also had people come to me personally and tell me that they heard about a natural cure for AI.

Some of the sites they refer you to look like genuine medical sites. They even claim to be by Dr’s.

And that is not to say that the “Dr’s” don’t have a Doctorate. One particular one has a Doctorate, but in fact it is in nutrition. But he has developed a great, natural cure for AI. He is not a medical practitioner, can not do blood tests (and does not recommend blood tests). He is a multimillionaire by selling “snake oil” aimed at those with “Adrenal Fatigue”.  Unfortunately people thing that Addison’s is simply Adrenal Fatigue and can be cured naturally.

Another such site was posted on one of the support groups recently. Not to encourage us to use the cure, but in share frustration that the member posting it, had yet again been told that they can stop taking steroids, and just eat natural herbs, vitamins, and other cures.

I have also heard someone was told that they could go through a IVIG (immunoglobulin exchange) and they could stop their steroids because fixing the immune system would fix the already damaged Adrenal Glands. Fixing the immune system is great, and can stop an inflammatory attack from doing further damage (it even be used during CAPS), but it will not repair the damage already done.

AI does not only last while you are suffering an attack by your immune system, it is the resultant damage. Even once the attack is over, the damage is permanent.

Sadly some people believe these sites, and can end up in Hospital, fighting for their lives.

The cure this week: Vitamins, Liquorice and Green Tea. (Warning Signs Of Adrenal Insufficiency And Natural Methods Of Treatment)

The issue I have with this one isn’t taking vitamins, it isn’t eating liquorice, or drinking green tea. All of things, in moderation, can be good for you.

The issue is people miss quote research, meaning their solutions can be dangerously wrong.

Grapefruit juice and licorice increase cortisol availability in patients with Addison’s disease: Paal Methlie1,2, Eystein E S Husebye1,3, Steinar Hustad1, Ernst A Lien1,2 and Kristian Løvås1,3

This study looked at the effect of Grapefruit Juice and Licorice on Cortisol.

Conclusion Licorice and in particular GFJ increased cortisol available to tissues in the hours following oral CA administration. Both patients and physicians should be aware of these interactions.

The most important thing about this study (which is what people use to say stop the cortisol and start eating licorice) is that it helps prolong the life of the cortisol in your body.

This sounds great, but it has been shown that over eating of such things as licorice WILL cause other medical conditions especially in Addisonians. The reason. Addisonians (especially primary) suffer from high potassium which must always be kept under control and licorice can decrease your potassium levels.  But there is a warning out there “Despite its apparent use in a few clinical scenarios, the daily consumption of licorice is never justified because its benefits are minor compared to the adverse outcomes of chronic consumption.” (Licorice abuse: time to send a warning message. Hesham R. Omar,)

The catch?   To help extend the life of cortisol in the body, you must first HAVE cortisol in the body. Addison’s Disease/Adrenal Insufficiency means you no longer naturally produce cortisol. What you have in your body is what you take via replacement therapy. With secondary AI you may actually produce a little, but not enough to live. It doesn’t mat­­ter if you don’t have a math degree, you should still know that 0 x anything will still be 0.

Are you getting the point yet?

You can’t increase the effect of something you don’t have. For this particular website to say you should stop taking steroids and start taking their “cure” is actually dangerous.

Education doesn’t always work

As said earlier, I have very recently been the victim of this myself. I spent some time explaining to someone, the problems with Adrenal Insufficiency, what it was, what Derek had to take to stay alive.

I have now been told twice by this person that natural treatments will fix Derek. I should get him off all his medication, and give him “Adrenal Support”, which I discovered when I looked up the product I was told about, was in fact animal adrenal glands with other herbs and vitamins.

Wow, if only. Unfortunately this was the “cure” from 1890’s to 1950’s when they found Hydrocortisone allowing Addison’s sufferers to actually be able to get out of bed (although some still can’t), a lucky some to work, and if lucky (and the medical profession don’t kill you first) to live a longer life.

I am sure I have said before, hydrocortisone is not a Cure for Addison’s disease. There is no cure. Hydrocortisone and fludrocortisone are what is currently used to keep the Addisonian Patient alive. The average Life expectancy is now found to be reduced on average but a lot longer than in 1942 when it was still less than 2 years and where if you had to have surgery, got an infection or even a tooth extraction, it would probably kill you.

Why, oh why, would anyone go backwards to “natural cures” that would if you were really lucky, keep you alive (but in bed and in pain) for no more than 2 years over the synthetic hydrocortisone that is available today.

If you are reading this please DO NOT tell your friend who has Adrenal Insufficiency, either primary or secondary, that you have read about a cure. You will only achieve 2 things.

  1. The loss of a good friend (if they were one to start with)
  2. Manage to make yourself look stupid.

Now you know it, forget it!

That is the Mantra of the Lecturers to Medical Student’s after being told about rare diseases.

I was talking to a Medical Student (just completed her 5th year) while I was with someone at the Emergency Department of a hospital recently.

We began talking about Chronic Illnesses and the fact that the families of those with Chronic Illness know more than many Dr’s about their particular condition.

She asked me about Derek’s illnesses…. “do you mind me asking what he has?”

No, I did not mind her asking. I am all for education.

I told her Antiphospholipid Syndrome. “Oh” she says, “I have heard of that”.

To say I was very surprised would be accurate.

I then asked her how she had heard about it.

Apparently, they were told about it in a Gynecology Lecture, had to learn about it in relation to pregnancy, and had a question on it in their 5th yr Exam.

They were then promptly told to forget about it, as they would never meet anyone with it.

She was not aware that Men could get it, or that it was something that can and does occur outside pregnancy!

Given that I know at least 4 women with it, and Derek has it, it isn’t that rare.

She knew nothing about the Catastrophic variant  or even that such a beast existed.

This is not the first time I have heard this about rare conditions.

Every time we query a Junior Dr or fully trained Nurse they say the same thing about Addison’s Disease/Adrenal Insufficiency. “We are told it exists, what the symptoms are, then told “but don’t worry, it is so rare you will never meet anyone with it”.  They are then shocked to hear about Derek.

If he is in hospital, the Medical Students are told to go see him, they will never meet anyone like him again!

No, they won’t. Because if they have a patient with either of Derek’s conditions, the patient will probably die before they are diagnosed.

Then there are those patients who suspect they may have a rare chronic illness is who are frequently (almost always) told “No, you can’t have that, it is too rare!”

Another useful thing all Medical Students are taught is: “if you hear hooves, look for horses, not Zebras.”

Just because a condition is rare does not mean it doesn’t exist.  It also does not mean that a patient is imagining things.

So what does this mean?  It simply means you look for Zebra’s if the Horses aren’t in the room.

How can you rely on the Medical Fraternity, when they so often get it wrong.

That is not to say they should know everything. What they should be doing is listening to their patients. Don’t rule out things just because they are Rare, or not “normally” found in that sex.

Listen carefully to your patients. If what you think is wrong comes back negative, give your patient the benefit of the doubt. Do the basic test to see if it IS  a “Zebra in the Room”. If you want to be arrogant, do the test to prove your patient wrong.

What is the worst that can happen?  The Patient is right, and you have to apologize.

Heaven forbid a Dr should find out they are not GOD!

DHEA – To Take It or Not

What is DHEA?

Dehydroepiandrosterone (DHEA) is a drug that those in the Addison’s world talk about.   Some talk is positive, some is negative.
Some have tried it and think it is the best thing since sliced bread, others have tried, and stop quickly because of their perceived side effects.

Technically Dehydroepiandrosterone (DHEA) and DHEA sulfate (DHEAS) are the major circulating adrenal steroids and substrates for peripheral sex hormone biosynthesis.

DHEA is a Hormone precursor that is produced by the adrenal glands. The problem is, as a rule it is not replaced when your adrenal glands fail, especially in men. For 2 years, we didn’t know anything about it. It wasn’t an option talked about by Derek’s Public Hospital Endocrinologist. It was something I started hearing about in the Forums.

After discussing DHEA with a number of men in the forums I talked about it with Derek. He started investigating. He is not one to listen just to those taking it. He wanted to know the scientific information behind it.   He read multiple studies.

After 6 months of investigation we went to our Dr and asked if Derek could trial it. She had heard of it, but never scripted it so sent him to a private Endocrinologist who worked with “those with complex endocrine issues”. We spent an hour with this Dr.

At the end of that time, we walked out with a 3 month trial of DHEA. The catches:

        It is a prescription only medication.
        It is not available through your normal pharmacy.
        It is not subsidised, so you have to pay full price.
      You have to go to a compounding pharmacy.

DHEA and Testosterone

DHEA increases your Testosterone, in both women and men.  There is he risk of too high a rise in Testosterone because Derek has had, but is currently clear of, Prostate Cancer. We are aware that pushing his testosterone up too high may be an issue.

We decided the trial was worth a trial it.

We knew all this going in. We also hoped (but anyone who knows ACC wouldn’t hold their breath) that as this was a hormone produced by the Adrenal Glands, ACC would pay for it.

Step 1 – Get blood tests of important levels as a base point.

Step 2 – Send script to the Compounding Pharmacy. The Endo gave us the name and contact details. We then contacted them to find out what had to happen.

Step 3 – Wait. Because the drug had to be made for us especially, we knew it would take a few weeks. It finally arrived.

Step 4 – Trial Begins. There needed to be some provable results so we got blood testing. We started with levels of cholesterol, testosterone and DHEA.

Derek began the Trial. – 25mg/day

After a week he felt he wasn’t quite as tired as he normally was by the end of the week.  I actually observed one night about 5 days into the trial, that he was still up working on his tablet and watching TV at 9.15pm.

His normal bedtime for the last 3 years has been 7.30-8.00 pm.

Was this wishful thinking, or genuine result? Time would tell.

After a month I had noticed a difference. He seemed happier, more relaxed, less fatigued (we were able to do more things), but the biggest difference was he became more “loving”. He was not back to pre injury, but he would grab me as I walked past and give me a hug. Something he hadn’t done in a long time. Not that he hadn’t wanted to, he just hadn’t had the energy to do it.

After 3 months we had his levels checked again.

Testosterone Range – 9-25 nmol/L
Pre DHEA – 15.3 nmol/L
Post DHEA – 19.7 nmol/L

DHEA Serum Levels Range: 1.4-8.0 umol/L
Pre DHEA – <0.6 umol/L (undetectable)
Post DHEA 2.6 umol/L

LDL/HDL ratio: <4.0
Pre DHEA – 6.1
Post DHEA – 6.0

The Trial Ends

After 3 months it was decided Derek would take a 2 week break while we got another script, and to see if there was any obvious change.

Within 4 days, he was back to going to bed around 8.00pm at the latest. He was struggling to work properly, he was finding it hard to focus on things for too long.

Monday of week two he struggled home from work and collapsed into his chair. He could barely function. Tuesday got worse. Wednesday he was barely working. He took extra cortisol.

Thursday he again took extra cortisol, had a bad headache, and his blood pressure had begun jumping for no obvious reason. His mood was that of a person fatigued to the point of no patience.

Another thing we noticed is that at some in the first day or two of stopping the DHEA he had knocked his head, and had got a small “mark” which bled. Every morning for 2 weeks he would wash his face, and the small mark would bleed. On the Saturday before he started the DHEA again he was walking into the bathroom and walked into the door frame. He cut his forehead just below the previous mark, and right through his eyebrow. It wasn’t a serious cut, but enough that it took a while to stop bleeding.

The telling issue came at midnight Thursday night/Friday morning of week to off DHEA.

I woke to find Derek tossing and turning. I heard the tell tale signs of burping. I lay there, not letting him know I was awake, as he hates disturbing me.

He had developed a headache before going to bed, and by midnight it was a lot worse. He eventually took panadol and got up for a cup of tea. I went to the kitchen to see him, get him back to bed and, after resting for 5 minutes, I took his BP. After being in bed for 6 hours, it had risen to 157/99.

At this point I insisted he took more HC. We had two more days before we were going to have him take the DHEA again.

Should we give up and start it again?  Was this rapid downhill run truly due to the lack of DHEA?

He suffered on Friday, taking double dose HC. He was not ill, but showing signs still, of too low a cortisol level.  Saturday morning, laying late in bed, Derek asked me if he should take the DHEA or wait till the Sunday.  He was getting worse by the day so I told him to take it again.

Back on DHEA

Derek started taking DHEA again on Saturday, Sunday he felt the same (we didn’t expect anything else).  We have settled on 25mg/day.

Monday he worked from home. He felt tired, but not as bad as the previous week.

Tuesday night our youngest (18 yr old) came into the lounge and asked if we were going to bed, what was Dad still doing up.

We suddenly realised it was 9.45, and he was tired, but not struggling to the point of being desperate for bed.

Other things we noticed.

We have noticed some other things significant to Derek.

The most telling was the small mark on his forehead that had continued to bleed each morning on washing his face for the whole 2 weeks he didn’t take DHEA.

By Monday morning, not only did that mark finally stop bleeding when Derek washed his face, but so did the cut he received 2 days previously.

Since his CAPS event, he has suffered from sharp sudden migraine type symptoms when put in a fight or flight situation. Nobody has been able to get to the bottom of this. The only thing we know for certain is that, if it is a visual issue, the pain begins on the right side of his head, if it is auditory, it begins on the left.

What Derek didn’t realise until he stopped taking the DHEA is that he still suffers these incidents, but the sharpness of the migraine has been reduced when on DHEA. It wasn’t until he suffered a fright in the car on the second Saturday and he got the old “sharp” pain in his head did he realise that in the last 3 months, the pain had been more dull than sharp. He also suffered 3 events in one day.

Clearly this is a Plus for Derek.

The second thing he has noticed is his sleep. We have Fitbits. We use them, not only to track walking, but to track his sleep.

When not on DHEA Derek tends to “crash” for long periods of not moving.  When on DHEA his sleep is more of the normal 3 levels of sleep that “normal” people get.

During the 3 months trial period Derek got a cold.  It is not the first cold he has had but this time, it didn’t come to anything. He took an extra couple of days at home, but he didn’t need to take time in bed. He was able to function. This was a big change from previously when he would end up in bed, taking double or tripple dose HC for 2-3 days just to function.

He is going to continue taking this for at least a year to see if there is further improvement. The fatigue is still there, that is a side effect of the exective dysfunction, the effort to eat with his dysphagia, and the adrenal insufficiency, but it has definitely lessened. With some of the other improvements, for Derek at least, DHEA is something that should be replaced.

As a foot note. The Accident Compensation Corporation has agreed to fund the DHEA, our local Chemist is able to source if for us (from the compounding pharmacy so we simply take the Script to them when Derek takes other scripts in, and now the Dr knows what level to prescribe, she will do the pescriptions.

Today, all is good with the world (at least the world of DHEA).

If you are a male with Adrenal Insufficiency, and you haven’t thought about this hormone, it is worth giving it a go. There isn’t a lot of research where men are concerned, but that doesn’t mean it isn’t right for men. Speak to your Dr or Endocrinologist. If they say NO, ask them why, make them justify not giving it, rather than them making you justify why you should have it.

WARNING:  there are two types of DHEA.  Be careful which one you get.

Wild yam and diosgenin promoted as a “natural DHEA.”   In the laboratory DHEA is made from diosgenin, but this chemical reaction is not believed to occur in the human body. So taking wild yam extract will not increase DHEA levels in people. Individuals who are interested in taking DHEA should avoid wild yam products labelled as “natural DHEA.”   Copied from <http://www.nlm.nih.gov/medlineplus/druginfo/natural/970.html>

In Dr’s we Trust?

Without really thinking, we do.  They are Dr’s, they know it all.  But putting all your faith in these special people, especially specialists, is not always a safe option.

We have been going around in circles trying to get more things sorted.  Derek’s lungs don’t appear working properly.  He gets breathless quickly, when talking, when walking, when laughing.  He is now worse than he was a year ago.

We used to walk 5.5km in an hour with no stops.  Now he walks that distance in 1 hour 20 minutes and he has to stop.

We are trying to find out why he is going down hill so have asked several medical people to investigate.

We went to a specialist Endocrinologist in June this year. One we have been to several times.   We mentioned this reduction in ability, but it was not recorded.   He spent a short time with us, discussed things, then wrote a letter to our GP.

This is an important letter as it tells Derek’s GP how he is doing currently with his health and his medication levels.

We have recently changed GP’s as our previous one has recently retired.  Therefore the new Dr needs all these specialist notes, to ensure she is treating Derek properly.

At the time of transferring, we decided to get a copy of all of Derek’s GP’s notes from his previous GP to see what had or hadn’t been noted.

What I found floored me.

We all put our faith in the medical profession getting things like medication correct..  But is that faith justified?

To put your all trust in what Specialists say (and they are supposed to be the all knowing Gods of Medicine), has again proven to be very dangerous.  Thankfully this time, we ignored what the specialist wrote, and the Dr didn’t bother reading what the specialist wrote.  Instead, the Dr asked US what medication Derek was on.

What the letter stated as Derek’s medication was  dangerously wrong.  This specialist  is the one responsible for making note of what Derek’s medication should be on a daily basis to keep him alive.

According to the latest letter to our GP (and the one that the hospital would read to confirm dosage) The letter states ….Hydrocortisone is 10 (5 at lunch, 5 at dinner)….

hc dosingThe letter should read 10mg HC in morning, 5mg at lunch and 5mg at dinner.  There is 10mg of Hydrocortisone daily missing.  It is half his daily dose to keep him alive!

If Derek took that low a dose he would not be conscious to take HC at lunch time on the 2nd day.  He takes 10mg in the morning (6am) rolls over to let it kick in, then takes another 5 before lunch time, and another 5mg at 4pm.

Derek has had blood tests done at 8am before his morning dose of HC and it was found that he had a level of  9nml/L in his system, the absolute minimum a normal person should have is 250nml/L.  It should actually be in the 500’s at that hour.  Less than that and you are probably in crisis.

Taking 5mg at lunch time, then 5 in the late afternoon would not be enough to keep him alive for more than a few of days, and those would be a major struggle to stay conscious.

Taking Hydrocortisone is not like eating extra food.  You can’t take your normal dose one day, stay in bed all day, and store it up, to use when needed another day.  It peaks at 2 hours post taking, and only lasts in the system for 4-6 hours.  Once that 4-6 hours is up you start to go down hill until you take your next dose.

Derek cannot get out of bed in the morning except to struggle to the toilet if he hasn’t taken any HC.

And the kicker is, the less HC you have in your system, the quicker you use it up as your body starts fighting to cope, so it use up what it has to function pretty quickly.

So putting on a legal document that he is only on 10mg a day when he struggles to stay out of crisis on 20mg, is a medical misadventure waiting to happen.

NEVER PUT ALL YOUR TRUST IN YOUR DR.  Always get a copy of your medical notes, and check them for accuracy.  They have a habit of not recording everything you say, interpreting it how they want so it fits the book, or just brushing it off.  Or worse, not checking their own notes, when writing to inform others of important information.

There is no excuse for getting critical details wrong when it could seriously harm someone

 

Medical mishap almost killed man

Quote

In my post “One Year On” I stated that we held Wellington Hospital CCDHB responsible Derek’s CAPS event, and that they could have taken measures to prevent it.

After months of investigating, in March 2014 we contacted the CCDHB to tell them our thoughts on what happened.

Several months ago we were told that there was to be a full investigation into the event to see if they could work out what happened.

That investigation is now complete and they have agreed with us that they failed Derek at every turn.

We received a copy of the report 2 weeks ago, but didn’t agree with what it said, and many of the assumptions they made. We went to a meeting with the writers of the report and as a result, they have re-written the report and accepted even more blame.

Under Findings it states:

The review team consider the root cause of the adverse event was communication failure. The final plan was neither communicated to the patient in full in a manner that ensured the patient had received and understood the final plan, nor was his understanding of the plan checked. It was not identified during the admission for surgery that the pan was not being followed as expected.

There is a system in place in all hospitals that, when an adverse event happens for whatever reason, it should be investigated.

Also under Findings:

The review team note that the reportable event was indicated but not entered when it was identified that the patient had developed CAPS and that the anticoagulation plan had not be fully implemented.

In the Cover Letter they acknowledge:

Due to the failures in communication of the plan to Derek, and the lack of detailed documentation in his clinical record, we did not recognise that the intended plan had not been completed until Derek wrote to the CCDHB in March 2014 with concerns.

Our goal in complaining, was to ensure there are processes in place to try and prevent this happening to anyone else. They now have to put in place, set procedures which must be followed.

Hopefully this will not happen again.

At the same time we asked that a very special Dr got mentioned. Her name is Dr Helen Myint, I may have named her before, but we firmly believe it was her diligence that saved Derek’s life.

The final part to their admission of errors, is the public report they must do.  As a result Derek ended up on the front page of the Dominion Post in Wellington.

Medial Mishap

MEDICAL MISHAP: Upper Hutt man Derek Edson developed a chronic illness when doctors failed to note his blood-clotting condition before cancer surgery.

MEDICAL MISHAP:

The medication Derek Edson needed to survive cancer surgery was waiting to be picked up from his local pharmacy – but no-one from Wellington Hospital told him about it.

As a result, the Silverstream resident nearly died, and will now have chronic exhaustion and ill-health for life.

The 56-year-old computer programmer brought a complaint against Capital & Coast District Health Board – one of 454 cases of medical misadventure recorded nationwide in the 2013-14 year.

Because of a pre-existing blood-clotting condition, he should have been taking a drug called Clexdane before his prostate cancer surgery in September 2012. The drug had been ordered and was waiting for him – but he didn’t know.

After surgery, his health went into a rapid tailspin, and his adrenal glands permanently died – a condition known as Addison’s disease. He suffered severe liver and kidney damage, pneumonia and fluid in the lungs. “I kept going downhill.”

On a good day, he crashes into bed at 8pm after a day of work. On a bad day, he is in the emergency department, facing a coma or death within 72 hours.

He said: “I don’t have the initial upset I used to have – I can’t afford to.”

Frog in a Well

frog

Did you ever go to a dance and try to slow dance on a crowded floor with the aim of just getting from one side of the hall to the other? Have you found that each time you moved in one direction, you ended up further back than when you started? You are moving, and think you are going forward, but when you look up from focusing on dancing you see that you have moved in the wrong direction?

This is what it can be like with Chronic Illness.

Derek has been trying to get his fitness up. Each time he tries, he gets sick, either a cold, general fatigue, pneumonia (this last one). It takes a long time to recover from each illness.

The problem is, he takes 1 or 2 steps forward in his fitness, and bam, he is knocked down with something. It then takes him a month to recover enough to try and get fit again. The problem is, that month has not only taken away the fitness he had achieved, but it has also wiped out another part of what little he had started with.

For example, we have recently bought him a Fitbit. It’s a fancy pedometer.  We set it so that each day Derek must do 6000 steps.

When he began, he could easily do 5000, and had to make a little effort for the last 1000. He got pneumonia 4 weeks ago. He went from doing 6000 steps daily to nothing for 3 weeks. Now he is struggling to do 4500.

You see, he is swimming against a strong current. He is not only having to start again, but he is starting a little further behind where he was. And the more he tries to get back to his 6000, the harder he has to push himself, and the more chance he has of getting sick again.

This doesn’t mean we are giving up. He is doing other things to try and improve his leg muscle tone even when he can’t get out and walk far.

I read a post by a teenager with 3 Chronic illnesses today who was talking about the fact he may not be able to do his chosen sport of boxing any more. He likened it to Muhammad Ali who, when knocked down in a fight, and everyone thought it was over for him, Ali got back up, took one punch at his opponent, and knocked the guy out. He had decided that being down for the count was not for him. Nor was it for the brave teenager.

And that is what most people with Chronic Illness do every day. Something sucker punches them, they lay there for a minute, take stock, then get back up fighting. They may not have a lot left to fight with, but sometimes it only takes one punch to win the fight.

The battle still goes on, one fight at a time.

As Derek and I dance on this dance floor of life, we dodge some things, we get blocked by others, we get pushed backwards by yet more. But eventually we WILL make it all the way across the dance floor.

 We won’t dance around the floor because even moving forward you end up right back where you started from and where’s the challenge in that. It seems a wasted effort to me.

Prostate cancer campaign ahead

Finally Prostate Cancer is being taken as seriously as Breast and Cervical Cancer.  Derek is “in remission”, i.e. he does not currently have active cancer because his Dr is proactive in screaning.  Had he not been, who know what state it would have been in, a year from now.  2 years makes all the difference in catching Prostate Cancer in time to act, or in time to “treat” until death.

http://www.stuff.co.nz/national/health/9450677/Prostate-cancer-campaign-ahead

It’s All in His Head!

Imagine how you feel when you are trying to get someone listen to you, to help work out what is happening and the Dr you are talking to you tells you that.

For months we have been trying to work out what we should be doing when Derek gets a fright and has an “episode”.  He would get a bad headache, loose focus, be unable to communicate properly, speech becomes slow, it is all he can do to be conscious, as and he has to lay down.

Then when you finally get an appointment with a Specialist and you are told that “it’s all in your head”.

Lets go back to last year………

While Derek was laying unconscious in hospital, I noticed that the left side of his face was slightly lower than his right.  I tried talking to the Dr’s about it, but they didn’t show any interest.

When he left hospital we noticed (I noticed) he had left side deficit in his leg and his foot would slap when he walked.

It took 6 months of physio to fix it to a point where we only notice it if he is really tired.

He also has the issues I recently highlighted where every time something happens he ends up needing to lay down for hours on end.

We have been searching the internet to try and find an answer.  We were sure it was to do with his adrenal glands, and the lack of an Adrenal Medulla, but couldn’t find anything to give us a hint of what it could be.

After our last visit to our GP he finally decided that it needed investigating.  Great.

He contacted Derek’s endocrinologist.  As far as the Endo was concerned, his Adrenal Insufficiency was under control.  He was sure it wasn’t that so he didn’t want to see him.

Derek was then passed on to a General Medical Consultant.  We are not sure how it worked, but the GM Consultant to take the case was  his Rheumatologist.  Great, but could he explain anything/everything?  Would he listen, would he be able to work it out.

Apparently yes, his explanation is that “it’s all in his head”.

The Dr confirmed that Derek’s Adrenal Insufficiency is under control.  He is on the right dose of Hydrocortisone, he is on the right dose of Fludrocortisone.  Using clinical observations, he could confirm that the petuitory gland was fine, blood tests confimed his thyroid glands were working properly.

As the Dr sat there listening to Derek’s symptoms he asked a lot of questions and made lots of notes.  The most interesting thing is that he LISTENED.  He didn’t just pay lip service to what we were saying, go aha, ok, then say, Don’t know, go away.  He asked for clarification of each individual symptom.

The whole appointment took 1.5 hours.

At the end of it, the conclusion was “forget everything from the neck down.  We will focus on your head, that is where the problem is.

I.e., “IT’S ALL IN YOUR HEAD”

THANKYOU!!!!!

Finally we are being listened to.

What the Dr explained is that once you put the fact he has no adrenal glands aside, all the symptoms that are left can be very easily tied to traumatic brain injury.  The same type of injury you see in car accident victims, head injury victims etc.

Derek is now being booked in for an MRI and a neurological exam.  The Dr believes that there was probably (in fact extremely likely) brain involvement with the CAPS last year.

They may not be able to prove through an MRI that there is damage, but a neruo exam will help.  He seems convinced however, that it has happened.  He did warn us that we may never be able to fix the problem, it may or may not get better, if it does, it may take up to 5 years to see any improvement, but we don’t expect to see it back to normal.  That is fine.  At least we will have an answer.  Somebody is taking the time to confirm what that there is a problem, and what the problem is.

We will finally get an answer.

We will then have to learn to live with whatever the results are, but that would be no different to what we are living with now.

“it’s all in his head” is a good thing.  Brain Injury not so good, but we can work with that.

When Boring is Good

Boringmonotonous, tedious, irksome, tiresome, humdrum. These adjectives refer to what is so uninteresting as to cause mental weariness.

Just imagine waking up to the alarm, getting up and doing a couple of chores, having a shower, getting dressed, having breakfast, getting in a car, and going to work.  You work all day, then come home.  You help cook dinner, maybe even do a few light weights, then sit down for a while working on the computer.  9.30 you finally go to bed for a good nights sleep and repeat the day.

Most of us take for granted that this will be our day.  We think it would be nice to have something “exciting” happen.  For us, this IS exciting, because it is so “normal”.

It is now almost 3 weeks since Derek got supplied a Taxi to and from work.  Taking just that bit of stress out of his day has made all the difference to his health.

Last Saturday night we went to watch Phantom of the Opera. He woke up the next morning feeling tired, but so did I.  We didn’t get to bed till late so of course we were tired.  No extra HC needed, no feeling that he was going to crash at any time because he was under medicated.

As long as the Taxi Service is continued through Winter there is some hope that Derek will be able to get some of his fitness back, and therefore be able to improve his all round health.

Our next challenge is to try and again reduce his daily medication from 10/10/5 to 10/7.5/5.  I don’t believe he will ever go down to 5 at lunch time, but 7.5 may be a possibility.

It’s been “boring”.  But “boring” is good.  He has even driven short distances twice.  Only time will tell, but we have time.

One Size Dose NOT Fit All

If there is one thing we have learned in the last 9 months it is that where Adrenal Insufficiency (Addison’s) is concerned, One Size Does NOT Fit All.

We have met other addisonian’s on line, from NZ and other countries.  They are all different in how they manage their condition, how much Hydrocortisone they take, or which other corticosteroids they take to replace their Cortisol.  It also varies on when they take it, when they “stress dose”, why they “stress dose” etc.

Derek is slowly learning what works for him.  We ask others with more experience what they do, and then work out if it could be of benefit, either by trialing, or by “assessing the benefits”.

One thing we have found out is that “Stress” is different for everyone.  Derek finds it stressful getting to work in the morning.  Since he has had a Taxi to work, he is feeling a lot better.

He also finds meetings where he is not the person with the knowledge and experience, can be extremely stressful.  When he is in a meeting at work, or with a client discussing their needs for individualised versions of  his Security software, he is in control, he knows what he is talking about, so he does not get as stressed and can normally manage such meetings without “stress dosing”.

When he is in a meeting with  someone where they “have the upper hand”, or they are controlling the meeting, it is a lot more stressful.  A Job interview, a phone call to make a complaint as a consumer etc, are all stress triggers for him and he needs to Stress Dose.  Others find just dealing with their Dr causes high stress levels.

We have also found that the standard “You are this height, take this dose” also doesn’t fit everyone.  In fact, it’s a shame the Dr’s don’t realise it doesn’t fit anyone.  There is no consideration for what you do for a living, what your home life is like, what other medical conditions you may have that your body is working hard to control.

And then, just for the heck of it.  Something happens (like you get older) and you have to change the amount you take because your circumstances have changed.  You no longer have to get yourself to work, your have moved into a house with no garden work to do, you get a pay rise so can get a house keeper, your kids leave home (one day please).  Any thing can change your routine to a point where you need to take extra, or, if you are lucky, can reduce what you take routinely.

Addison’s, like many, is a hidden condition. You don’t know someone has got it unless they tell you, or they collapse in front of you.  On a good day, they look “Normal”, on a rough day, they look tired, on a bad day you don’t see them because they haven’t got out of bed.

The only time you would notice it is if they are in a stressful situation or they have overdone things and they start to “crash” in front of you as their cortisol levels drop, their blood pressure drops, their ability to “function” drops.

I have watched this happen with Derek recently.  He was fine, talking, thinking, interacting, with life and zeal.  I turned to look at him and I could see him going down in front of me.  His speech had slowed, his eyes were a little sunken, he looked like he had been through the mill.  He decided to get up from his seat to get some more HC and found it hard to stand.  His blood pressure had dropped.

It can happen quickly.  The good news with this event is that when it happened, he took the extra HC and an hour later he was feeling better.  He woke up the next morning feeling well enough to go to work.

The speed an Addisonian recovers from stress is proportionate with how they are feeling pre-stress.  If they are unwell, it will take a lot longer to recover than if they were feeling good before hand.