The Dentist and the Dragon

The Dragon

As many of my readers know, we have a good medical system in New Zealand.  It’s good, but it’s not great.

We also have a very different system when it comes to injuries and medical misadventures.  For a start, in New Zealand we don’t call them Medical Misadventure.  Oh, it’s an adventure.  For some, like Derek, it’s the ride of your life.

But it is, like a broken leg, classed as an injury.  For Derek, it’s a “Treatment” injury.  He was injured because of medical treatment.  But that’s history.  Or should that be “His Story”.

When you suffer at the hands of the medical community, and are injured because of it, you get to have an assessment by the Government’s “Independent” “Insurance” Company.

Set up in the 1970’s, it was designed to stop any form of Litigation.  Stop people having to pay crazy amounts of insurance just in case they suffer an injury.  But like anything new, the concept and the reality can be vastly different.

This great independent organization, that was there for the injured, were under some very strict Insurance type rules.  And like any good insurance company, they change the rules as often they change their pants.  So, you have an injury you don’t know if you will be adequately covered.

When you read back through my blog you will see that Derek was covered for his Treatment Injury.  This injury is his Adrenal Insufficiency.  This impacts all parts of his life.

He had to give up driving because, although there is no obvious brain damage, he can no longer multi-task (Yes!  I was lucky enough to marry a man that could multi-task).  He is also one of the most intelligent men I have ever met.  This is not me saying this, his School History (top 50 in the country) says this.  He has been assessed as being unable to focus on more than one thing, his short-term memory is now not what it was, his ability to manage his stress is nothing compared to what it was.

But we manage.  He still has his job.  That’s thanks to an amazing boss.

So, the New Zealand insurance system, known as the Accident Compensation Corporation (ACC as we all know it) is our Dragon.

His treatment injury is permanent.  It affects many aspects of his life, and if we need help because of that, we have to go into the dragon’s cave, and convince that dragon to stop breathing flames, and let us past, to get to the help we need.

To this end, he has a “Case Manager”.  This is his direct contact in the dragon’s lair.  But this Dragon is very hard on their workers.  They are always being burned to the point the run, screaming from the lair, never to go back.

But on their way out, as the scream ENOUGH, they are supposed to contact all their “clients” and let them know they have reached boiling point, and they have run.

The Dentist

So why the back story?

Earlier this year Derek when for his normal checkup with the Dentist.  She checked his teeth.  They are ok.  He needs more work the longer he is on steroids, but it could also be the fact he has “reached a certain age”.   It comes to us all eventually.

She did x-rays, and then the bad news.  “You need to have your 2 remaining wisdom teeth out.”

“OK can you do it?”  Ah, the naivety of my darling husband.  Hell NO!  No way she will do it.  She doesn’t mind the fact he is on warfarin to stop him clotting.  He can even keep his INR within his designated range.  She isn’t even worried that he has suffered CAPS.  What she is terrified about is the stress it will cause him, and the very real, and high risk of an Adrenal Crisis.

“You need to see an orthodontist.  They will do it under anesthetic, in hospital, where they can keep an eye on you, and monitor you properly.

Here’s where it gets a bit real.  Oral and Maxillofacial Surgeons cost money.  OK, not as much as in the US, but a lot for little old NZ.  And I sure as hell am NOT paying.

I don’t mind paying $1500 to have it done in the local surgery, under local anesthetic.  But an oral surgeon, anesthetist, a hospital bed for the day (or longer).  No way.  We would not have to pay that if he didn’t have AI, so no way am I paying.

Fighting the Dragon

Off to the Dragon’s Leir we go.  Putting on our bravest face.  Derek puts the words on paper, and I then writing them in a firm way.

Please Mr Dragon, can we have the money for the surgery.  We should be covered as it’s due to the treatment injury he needs the high-risk extraction.

I don’t know if it’s the words I use, but we were told “Please, who would you like to assess you.  We have Surgeons on our supplier list.  Use one of them”.

Well, this is going to be a battle then.  And the line has been drawn.  We have to use one of THEIR suppliers.  And anyone who has dealt with ACC know that their “authorized suppliers” are not there to spend ACC money, they are there to reduce that spend.

First blood to us.  The Oral and Maxillofacial Surgeon we wanted to specifically use, is on THEIR list.  We get our choice.  But this is just stage one.  The visit to the Orthodontist to get an assessment.

Does Derek need the extractions: Absolutely, and soon, there is already jaw damage being caused by the teeth.  It will soon become painful, and there is a high risk of infection.

Does it need to be done by a specialist:  Absolutely yes.  These could be done in a standard dental surgery, but if something goes wrong, the teeth break or they are difficult extractions, then it would have to stop, and then it would become an emergency extraction.

Does Derek need General Anesthetic.  Yes.  Due to his complicated situation, a General, even though stressful on the body would be safer in case something goes wrong with the extraction.

We wait for the report to come back from the Oral and Maxillofacial Surgeon.  It didn’t come.  Oh, yes it did, it went to SPAM.

We then draft a very short email to Derek’s Case Manager and forward the report and the quote.

We decide that we will be willing to split the cost.  We pay what it would cost in a normal dental surgery, ACC pay the rest.  Now we wait to see what they decide.

Again, we waited.  The first thing we were expecting was a letter from the Case Manager saying “thanks for your email, I will forward it for decision”.  It never came.  So, a week later we sent it again.  Having fought battles with this Dragon before (and won) we did our usual.

“HI, you haven’t responded to our previous email.  Please tell us what is happening, we are reattaching the documents in case they were stopped at your gateway.”  We sent the email again 6 working days later.  Then we sent one without the attachment.  Still absolutely no response.  So we had one more go.  But this time we sent a copy to their “Complaints” department.  We have learned through the 6 years so far of battling ACC, that we need to do this to make things happen.

We received a very quick response, but NOT from our case manager.   The response included “ Ann has left ACC, this is why you wouldn’t have received a response yet.  We have sent your email to someone else”.  That was it.  Still no idea who.

Apparently, “Ann” ran so fast out the door of the Dragon’s Leir, she didn’t have time to let anyone know she was going.  We were put on to someone else.

We waited until “someone else” then responded to us.

So off to the complaints office we trot.  This time it was a “Formal” complaint, not just a CC.

We want to know who our case manager is, why have we not had a decision on the dental work, why were we not told our case manager had left, oh, and why, after making the first “complain” was his right to have what is called “Driving for Independence” looked at, and why was our GP being asked whether Derek was now able to drive safely, and therefore cancel the driving provided.

Suddenly a swathe of emails from the Dragon’s Leir.

  • SORRY! We have given you TWO case managers so this never happens again.
  • SORRY! Please resend the information and we will get it to our assessment team urgently.
  • SORRY!  I hadn’t read the case file fully, and just saw that your driving was renewed 6 monthly, and that hadn’t happened so was reassessing your need.  I now understand that it is a permanent (lifelong) Driving service we provide.

I guess, if you have to be given a sword to slay a dragon, it’s great when you get the RIGHT sword.

I have mentioned before, and if anyone fighting ACC reads this again, I will repeat.  YOU HAVE RIGHTS!  And for Derek, the key right is that they MUST take his injury into account whenever dealing with him. They had also failed to properly communicate with us, along with other violations.

For someone with a broken leg it’s easy.  They simply say, here, have some crutches and come on in for an assessment.  With a Mental disability due to an accident, it’s not as easy, and the sword they are given is NOT a strong one.  They are disadvantaged as they must fight with all the might of someone fully functional, but who is missing two arms.  And the sword can be taken at any time, just because they can.

But for Derek, they can’t do that.  His covered condition is Adrenal Insufficiency (although the regularly get that wrong, and are currently calling it Adrenal Sufficiency).   But as it is written everywhere that it is the lack of the stress response hormone, it’s a “Gotcha”.  They are not allowed to cause him stress because it will make him sick, and that is not taking his injury into account.

And they have come to the party.  Not quite with the best offer, but it’s a start, they have agreed to pay for the hospital, and the anesthesiologist.  We haven’t finished, but we have time.

So now the preparation begins for the 24 January 2020 (baring anything going wrong in the meantime). Derek is scheduled for the first appointment of the day, in a private hospital, for his tooth extraction, and a day’s monitoring to ensure he doesn’t get sick.

 

 

A Drug Seeking Nut Job?

This story is fictional, but is based on stories of people that I have talked to.

Are you a drug seeking nut job? Lifesaving Steriods ARE NOT recreational drugs!

Are you a drug seeking nut job?
Life saving Steriods ARE NOT recreational drugs!

Sally woke suddenly.  She could feel the headache.  She knew what it meant.  She had had these before.
She reached on her night stand for her drugs.  Taking 4 tablets, she put them in her mouth, took a mouth full of water and rolled over to try and go back to sleep.
She knew that getting this headache was going to mean a bad day ahead. 
Sally looked at her clock.  It was only 3am.  If she could sleep till 7 and then take more drugs she would be fine she hoped. 
She rolled over, praying the drugs would kick in soon.  Wishing the headache would go away, and hoping the rest would not come.  Deep down she knew it would, she knew she would spend the next two days fighting it off.  There was no way Sally was going to go to THAT place again.
In a town a thousand miles from Sally, Dave woke.  He knew that feeling. That urgency.  He also knew what he had to do.  He rolled over and looked at the clock.  It was 5.10 in the morning.  Dam, hopefully he could fix this.
He leant over to his bedside cabinet to get some tablets out of his bedside container.  He took a drink.  As he sipped his water he felt his wife stir beside him.  He didn’t want to wake her because he knew it would worry her.
After he had swallowed the tablets, he gently sat up in bed.  He didn’t have much time, but he knew, if he took it easy and didn’t try to rush this, he would make it.
He stood up and, leaning on the edge of the bed he walked to the end and around the foot of the bed.  Not much further.  He would make it. 
Oh crap, he had to move faster or disaster would strike.
He got to the bathroom and sat on the toilet.  The relief of making it was great.  There had been times when he hadn’t.
He sat, thinking about the last 2 minutes.  If the tablets stayed down for an hour, just an hour, then he knew he would be ok. 
Then it hit.  That all too familiar feeling of nausea.  Time was not on his side.
Back in Sally’s bedroom she lay quiet.  Then it struck.  She looked at the clock and did a mental calculation.  3.30.  Bugger, it was only half an hour.  Not long enough.  And with that though she leaned over the side of the bed and threw up.
Deep down she knew what she had to do, but she didn’t think it was that bad.  She grabbed her phone, there should be someone in the world awake.  “If I can just talk to them” she thought, they would tell her there was nothing really wrong, and she could just stay quiet for the day.
She opened her phone, swiped her pattern, and hit the facebook icon.
“I think I need help.  Is anyone there?”
“yes, what’s wrong” came the typed response.
“I woke up with a headache half an hour ago.  I took 20mg, but I have just thrown them up.”
“Do you have an emergency injection?”  Sally was focusing hard on what the person talking to her was saying but she was having trouble reading the words properly.  She couldn’t work out who was talking, and it didn’t matter.  She was just grateful someone was there to answer her.
“No, they won’t give me one.”
“How long ago did you take the 20?”
“Abot hald an hour.”  Sally was having trouble typing.
With that Sally dropped the phone and sped to the bathroom.  She just managed to get her head in the bowl of the toilet before she threw up again.
Dave was sitting on the toilet of his ensuite wondering if he was going to need to throw up, or if he could get back to bed.
He stood up.  The room moved around him as he fell against the wall.  This was going to be a good one.
He got a bowl from the bathroom cabinet where Jane, his wife had insisted they keep one, and took it back to bed.
So far so good, the vomiting wasn’t starting, and there wasn’t the urgency of the toilet needs.
He half lay, half sat up in bed.
“Are you ok?” Jane rolled over to face him.
“Yes, I don’t feel great, but I will be ok.”  He lied.
“Have you taken any more HC?”
“Yes, I just took 10mg.”
“Well make sure you still take your waking dose in half an hour.”  And with that Jane rolled over.  She knew Dave would be OK as long as he had taken extra meds.  He hadn’t thrown up, so there was no need to panic.
She also knew she would not bet any more sleep tonight as she would be listening for all the signs.
“Sally, how are you?”  Another group member had joined the conversation.
“I’ve just thrown up again.”
“You need to go to ER.”  The new group member said it.  Sara didn’t want to read it.
“I can’t.  I know what will happen.  They will leave me waiting for hours, and will ignore me.  If I bed for steroids they will say I am drug seeking.  They always do.”
“Sally, do you have someone who can advocate for you?”
“No, I will have to get a cab and go alone.  But I can’t go.  They won’t treat me.  An idiot Dr wrote into my records that I had Munchausen’s!”
“Shit. No wonder you are scared to go.  Do you have any evidence on you that you can take, to prove you don’t have it, but that you have Addison’s?”
“I had doctor who knew my issues who wrote a letter I keep in the file !…He stated not only do I not have Munchausen’s, I have all the positive test results proving my diagnoses! I cannot tell you how many times I’ve had to deal with poorly trained er drs and nurses who simply thought the was in my head, or that I was anxious!”  Sally was remembering the letter she had got written 3 months before.  Would it help?
“Please take that, get a cab, or call an ambulance, and get to hospital.  You are going into crisis.”
 Dave came back to bed,  He had just had a second trip to the toilet, this time he had gone at both ends at once.  It was 6am and he felt very dizzy, new he would continue to throw up.
“Can you take me to hospital.  I need fluids, and to find out why I am so sick.”
Jane was already dressed.  “Where’s your bag, I need to inject you before we go”.
She got out the solu cortef and began drawing up the meds.  “Don’t worry about getting dressed, just put a dressing gown on.”
“Sit here while I get everything ready.  Do you think you will be ok with the injection? “
“Yes, just get me to hospital.”
With that Dave lay down and closed his eyes.  Jane took the injection and jabbed his leg, slowly injecting the steroids, praying it would keep him ok till he got to hospital.
Sally picked up the phone to call a cab but realised she just didn’t have the energy.  She needed to go to the bathroom again.
It seemed to be a long way this time.  The apartment was small, but she could hardly move.  Leaning against the wall she slowly made her way.
All of a sudden the walls began spinning, the floor started moving out from under her feet and she couldn’t stand.
It all seemed to be happening to someone else.  The pain was intense, it was like a vice grip was around her chest.  She started having trouble breathing.
“Dear God, please let Judith stop in on her way to work, and find me.”  All Sally could think was that Judith, her sister, was due to call in in an hour, to drop off some paperwork.
Sally lay there, wishing she had had the courage to go to ER, but knowing that there would have been no point, as they never believed her anyway.  She slowly felt herself going to sleep on the cold bathroom floor.
Sally’s life slowly slipped from her body.  It would later be found that she had had a heart attack due to extremely high levels of potassium, and dangerously low sodium.  Unfortunately, this was a very text book adrenal crisis, however, the Dr’s would fail Sally again, as the wrote the cause of death on her death certificate as “Myocardial Infarction”.   There would be no mention of the cause being an Adrenal Crisis.
Dave and Jane arrived at the emergency room.  Jane went to check Dave in and struck a nurse who clearly had no idea what an Adrenal Crisis was.    She knew what was coming.  She knew that this nurse thought she was being over dramatic.
“Please calm down ma’am, he’s not dying” was the stock standard response the Triage nurse gave her when she tried explaining the crisis.
This didn’t surprise Jane as she had heard it all before, the last one was  “modern medicine is just failing you. I’m sorry but go home and both of you get some rest “.
She knew what she had to do, and did it.  Right in the middle of ER she threw a fit.  She demanded a Dr look at him immediately, or the nurse had to sign the letter she was holding, stating she was refusing to treat her husbands adrenal crisis as a medical emergency.
She had used this letter once before, and just like that time, it had the desired effect.
Dave was taken to a treatment area, given IV fluids, and asked if he needed more steroids.
“He will need at least two bags of fluids, and another 100mg solu cortef in about 4 hours.”  Great, I will chart it came the response from the Dr.
He had never seen an adrenal crisis, but he had been told by the nurse that this woman was serious, was very knowledgeable about her husbands condition, and was not going to take no for an answer.
He had met people like this before.  People with a life threatening chronic illness.  They knew more than the Dr’s about their conditions, and they knew what treatment they needed.  He loved patients like this because he didn’t have to guess, and get it wrong.
Jane was happy.  “Finally, a Dr that listens to his patients, and gets chronic illness.”  She said this to Dave after the Dr left the room.
Dave left the hospital 8 hours later, having had anti nausea meds, 300mg Solu Cortef, and 2 bags of fluids.  He also had a script for antibiotics for the infection that was brewing (according to his blood tests).  They didn’t know where the infection was, but the Dr didn’t want to take chances.
The Dr had seen someone die once during his training because his supervisor hadn’t listened to the chronically ill patient, had disbelieved what was required, and provided a course of treatment that was wrong.  That was never going to happen again on his watch.
Both times he was in crisis and I pretty much had to throw a fit to get him treated.
________________

The people in this short story are not real.  But the stories of their treatment are.  Also the fact you can have a heart attack or stroke because of an adrenal crisis are is real.

There are also stories of people being refused steroids because they are drug seeking, but offered barbiturate pain killers, so they will hurry up and leave the ED.  They are then told they are depressed, anxious, or just nuts, if they refuse the pain medication and ask for life saving steroids instead.

For many, telling a Dr you need steroids makes you a drug seeker.  It is all to common.

Many people, mostly women, before diagnosis, are told they are neurotic, psychotic, depressed, suffering anxiety and in one case I have heard of, been sectioned.

Adrenal Insufficiency can alter the thoughts, and mental capacity of the sufferer.  They don’t always make sense, they don’t always understand what is being said.  Dr’s in ED’s don’t have time to think, they only have time to act on what they see.  And they see a drug seeking nut job, not someone who is critically ill.

­Once these labels are on your medical file, it is extremely hard to take it off.  If you live in a small town and you get the same ambulance officers each time, you will find their treatment the same.  And if you have family that also believe this, it makes it harder to get the right treatment.

There are many people who will not go to hospital when in adrenal crisis because they are so tired of being labled, and left.

I don’t have an answer for anyone.  It is a change that needs to come from the Medical side, not the patients side.

Bruno Allolio, is Professor of Medicine at the University of Würzburg comments:

“As most physicians very rarely encounter an adrenal crisis, they frequently fail to act adequately. There are numerous reports from our patients and others that physicians ignored emergency cards or failed to give parenteral hydrocortisone despite the patient presenting the emergency kit. Thus, I occasionally have given my patients a written text to be signed by any such future emergency physician. It states that the patient has communicated the presence of impending crisis, has shown the emergency card, and the emergency kit. By signature, the physician would thus attest that this evidence was presented, thereby documenting malpractice, if refusing to administer glucocorticoids. I reasoned that asking for the signature would greatly facilitate hydrocortisone administration.

As a consequence of these frequently encountered problems, the essential principle of crisis prevention can be stated as follows:

The well-informed patient (or his/her relative) guides the poorly informed health-care professional!“
If you are a Dr and reading my blog, think about how many patients have you had where you have decided the symptom they have must be anxiety or depression, because they are not presenting in the normal way.

If you have a patient present with a “pseudo seizure” how often do you decide that it means a seizure caused by a mental problem, rather than “caused by something other than an electrical misfiring of the brain, but NOT a mental issue?”

Pseudo seizures have been suffered by a number of AI patients who, because of them, are treated as if they are faking their symptoms.  They are not, there simply isn’t any medical research into why these seizures happen.

Chronically Ill patients should never be afraid to go to hospital (where they should feel safe) because of seriously poor treatment by the medical profession.

According to www.ncbi.nlm.nih.gov

Which drugs do people seek?

Benzodiazepines and opioids are the two most common classes associated with drug-seeking behaviour. Opioids commonly misused in Australia include oxycodone, fentanyl, codeine and morphine.

Psychotropic drugs producing stimulant effects, euphoria, sedation or hallucinatory effects are sometimes sought. These include the newer antipsychotics quetiapine and olanzapine, and stimulants such as dexamphetamine and methylphenidate.2 Anabolic steroids are also increasingly misused.

Anabolic steroids are NOT the steroids needed in adrenal crisis, however, as soon as you say steroids, it is assumed this is what you are asking for, and therefore, you must be drug seeking.

The Puzzel Pieces Don’t Fit!

Have you ever tried doing a jigsaw without the picture? You can put small groups of pieces together based on similar colour/shape/patterns, you can even put the edge together. But you end up with these small groups of pieces all over the place, but you can’t get them to make a clear picture.

You keep twisting and turning the pieces around and trying to fit them in different areas and in different ways, but they just won’t line up nicely. You think you have the right two groups together, then someone looks over your shoulder and tells you, no, that can’t go there because that piece doesn’t work. You end up with what appears to be something, but all together, make nothing.

That is what it is like with Derek. We have all the pieces of the puzzle. We have put them into small shapes, but we just can’t make the small shapes fit the big picture.

We always seem to be missing something!

Finally someone has come and put a group into the middle, that we left to the side. Suddenly it all fits!

Derek’s Addison’s is “under control” or at least as much as it will be. He takes extra medication when needed. His BP is reasonably stable most days. He is learning to cope with the extreme fatigue he suffers at times.

But that didn’t explain the bad headaches, the lack of cognitive skills which make him tired, the inability some days to do basic math when he has a Math’s and Computer science degree.

Recently I did a post called “It’s all in his Head” in which we were told that there “could” be a brain injury. Today we had it confirmed.

He had a simple neurological test. At the end of it, the Dr that was testing him said he had to go to see a Neurologist, as it was above his pay grade.

He failed the test!

The Dr deals with all types of Head Injury rehabilitation, but is not a Neurologist. He has pinpointed the damage to the Frontal Lobe somewhere. Now we have to find out where.

We also now have to “hurry up and wait” for testing to see how extensive the damage is, and put a stick in the sand (actually this one will be in cement as it won’t move) so in a couple of years time we can see if there is any improvement. It is not likely, but we also don’t want there to be any deterioration.

You think if you are told you have brain damage you would worry, but this puts all the pieces of the puzzle together so well. All the little groups are now sitting nicely in line with the brain, and the puzzle is starting to look like the whole picture.

It was with great relief that, as we walked out of the Dr’s office, we both laughed and said “You failed, Yay”.

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.

Welcome to Our World

This is the first time I have written a Blog. I am doing it because people keep asking us how we cope with Derek now having Addison’s Disease.
It’s a rare disease, not many have heard of it, but it’s time people were more aware of it.
Derek is now one of those people that you see looking “normal” but gets urgent action at Emergency Departments, can be “up” one minute, and unable to get out of bed the next.
There are many hidden diseases out there, this is just one of them.
Please come back whenever you like to see how we cope day to day with this illness.