International Travel with a Chronic Illness

leaving-on-an-aircraft

Our Next Adventure Part 1

Having managed tripping up and down the North Island of New Zealand over the last 4 years, including flying, just to see how it would go, Derek and I want to venture a little further.

The Practice

To begin our preparation for an international flight, the first thing we did was try flying to Auckland.

It required a trip to the Airport, then flying to Auckland, and driving to Hamilton.

Derek took extra medication to fly.  He took extra hydrocortisone for the drive to Hamilton from Auckland.  He then lay down for a long rest when we got to Hamilton.  He also had to rest the next day, but that is normal when we travel any kind of distance.

On the whole, the trip was good.  We listened to others’ advice, had learned what Derek could manage, and when he needed to up dose.

Flying Further

This time we decided to go to Australia.  Originally our first trip overseas was going to be to Sydney or Melbourne for a weekend for a Show. After being offered a trip to Fiji earlier this year, and the realisation that a 2 day trip would be way too hard, we thought a longer trip would be better.  Because a friend with Addison’s was heading from Hong Kong to Brisbane for medical treatment, and we had friends in Brisbane, that was going to be our destination.

We are not the first to travel with chronic illness, and we won’t be the last.  When you look around the cue of people going to the flight, you don’t know who has a chronic illness, who has spent days and weeks preparing, and who has just grabbed a ticket and headed to the airport.

I asked my cousin, who’s husband has several serious medical issues, what they do to take a trip.

Trev just sorts all his medication and I just carry it…never had any problems, I think I have only been asked once and they were good about it. I never carry hospital documents but for you guys being a first since Derek has been sick, just get your GP to write a letter out lining the diagnosis and a list of the medications on the letter. Never really had problems with insurance just be up front about it all, you may not get full cover but shop around. We don`t stress about overseas travel, there is always a hospital where you go if things don`t go to plan. Just relax and enjoy the trip. We are probably not a good example…as we are pretty relaxed about it and just roll with it…lol…isn`t that naughty, but thats just us…great place we have just come back from there.

The trip they had returned from was a trip to celebrate 25 years since “Trev” had an organ transplant.  (By the way, I am totally in favour of organ transplants.  It saves lives, including that of my cousin’s husband so please think about donating organs if the unfortunate need should arise).

Booking the ticket.

We have made the decision to travel over to Australia.

Now What?

Do we need to get permission from the Dr?

We don’t believe so because we went to see her about going to Fiji with a work trip for Derek, and she said no, because of the risk of food poisoning, the possible need for INR while there, and the short time frame.

But she said that if we wanted to travel somewhere else, like Australia or England, then yes, she would make sure we could do it.

We bought the tickets. tickets

When I booked it, I also requested a wheelchair at both ends.  That meant an alert on the ticket booking, and I had to call a number, and speak to someone.

The flight is a Partner flight, which means we are booking through one airline, but the flight is provided through another, so there was a delay while the confirmed that the wheelchair was available.

We knew from experience going places with Derek he could not stand in line long.  He gets very fatigued just waiting at the supermarket, and if there are more than 2 in a line, he has to sit while we wait.

Then there is the timing of the flight.  We could fly out at 11am.  That would mean Derek could wake up as normal, and we could take our time.  But that also meant 9-12 hours flying as we would have to fly from Wellington to Auckland, wait for 2 or more hours, then fly to Brisbane.  We would arrive at night, and it would be a very long day.

That would take more out of him.

Alternatively we could fly out from Wellington at 7am.  And then fly for 4 hours, directly to Brisbane, and land at 8am Brisbane time.

This meant a lot less travel time, but a very early morning.  Derek normally wakes at 6am, takes his first round of HC, then goes back to sleep for an hour while he waits for his meds to kick in.

This trip would mean waking him at 4am to take his first round of HC, Drive to the airport, have breakfast, then check through Customs. (hopefully we haven’t got any fines that hold us back).

So next we book an appointment with the Dr.  We need:

  • A letter for treatment protocol (if he suffers an Adrenal Crisis)
  • A letter confirming he is able to fly (because of Antiphospholipid Syndrome and risk of DVT)
  • A list of medication (it needs to be declared at every port entry and exit).
  • Any meds he may run low on before he leaves, or soon after he gets back.
  • We also need to organise an INR when we land in Australia. This is the bit we are unsure of, but the essential bit to make sure it hasn’t dropped too low while flying, which could mean a blood clot.

Then there is Travel Insurance.

Normally you just buy it when you buy your tickets.  All you need for Australia is cover so if you get waylaid, you can get a change of ticket.  But if you have extra conditions, you need to tell them about them.  Then the cost goes way up.  It went up by $150 for Derek.

But we don’t know if we have declared everything as they didn’t have the ability to declare the catastrophic event he had.  And I hadn’t declared his prostate cancer.  Oh well, looks like a phone call.

I got two quotes.  So we needed to call both companies to see how things would change.

After a long phone call to each company, Derek’s insurance was going to cost $6 extra for the prostate cancer which is in remission.

Medication

Emergency Kit

The Take Every Where Kit

We would need a list to make sure we took everything.   It currently sat in multiple areas of the house.  We also needed to make sure it all had a proper prescription labels.

When my friend Wendy travelled from Hong Kong to Australia I told her to declare, declare, declare.  If she declared everything she would be fine.

I was going to work on the same principle.  But that is not the case for Derek as he takes DHEA (Dehydroepiandrosterone).  It is classed as an anabolic steroid, and therefore restricted.  Derek needs a licence to carry it into Australia, even as a prescription medication.

And one of his other medications needs authority to carry it out of New Zealand and then back into the country.

So, we have a Dr’s note x 2, we have an emergency letter, we have an application to take his medication into Australia.

We can only carry a month’s supply in and out of New Zealand but that’s fine because we are only away 6 days.

We have to wait to hear from the Dr regarding whether he needs 1 more medication for the trip, but otherwise, we have things ticked off that we need.

Getting all the advice is key to a successful trip.  So I went seeking advice.

Travel Advice from the Experts

The Addison’s Disease Self Help Group UK has some great advice:

  • Good general advice for long distance air travel includes:
  • Remember that air travel is dehydrating so you will need to drink more fluids than usual in the air. Drink alcohol, cola drinks, coffee and tea sparingly as these dehydrate the body further. If possible, carry a large bottle of water in your hand luggage. If you forget to bring your own water, be assertive about requesting extra refreshments from the cabin crew.
  • Walk around the plane as much as possible. Try to get up out of your seat every two hours to stretch your legs and keep the blood flowing.
  • Many chemist shops now stock knee-length support socks, which can help prevent the formation of blood clots that might lead to a deep-vein thrombosis (‘stroke’).
  • Adjust your watch to the time of your destination as the flight begins, and adjust your in-flight activities to that new time zone as well. Sleep through the in-flight meals, if necessary, to get attuned to the new time zone.
  • Try to book flights that allow you to arrive at your destination in the late afternoon or early evening local time, so that you get a night’s sleep at the end of your travelling. Flights which arrive in the early morning local time will leave you tired after travelling but having to stay up all the day before you get a proper night’s sleep.

So we missed the last one.

But we are going to stay at the house of an Addisonian, so they will know that Derek will be going to have a sleep when he arrives.

So everything we can think of is ticked off.  Now to wait.

Now to wait for the actual trip.

We are excited about the trip.  We have thought of all the possible issues, and taken care of everything we can.  Derek isn’t being wrapped in bubble wrap, but we are reducing the risk as much as possible without saying, “too hard, not going.”

Next Chapter – The trip.

I am hoping this will be a very dull chapter with just the excitement of having the Sunday lunch with other addisonian’s, and enjoying visiting somewhere I have never been.  I won’t apologise if my after trip post is boring, as that would be the best trip ever.

 

 

 

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Know Your Own Numbers

Aside

Every few months we get a question from someone on a forum as to what a normal BP or Temperature, or blood result is.

Everyone will jump in with one of two answers:

  1. The books say…….
  2. Mine is……

Both of these are valid responses. However, the book “Normal” is simply what the middle of the Bell Curve is.

Most “normal” numbers are taken from a group (be it large or small) and are based on a Bell Curve of averages.

 

Bell Curve

In this image, all areas are “Normal” according to a “range” but where you sit will differ to the person sitting next to you.

The first thing Derek and I learned when he was diagnosed with AI is that there is no Strict Normal.  Most people will sit within a range, but they will not have identical numbers.

When you are sick, the first thing they check is BP, Temperature, Heart Rate and Oxygen Saturation and, if you are really lucky, they will do a few bloods.

That is great, but what if you normally sit in the High, and you are feeling off and now sitting in the Low end of the range. Although it might not be screaming “Warning… Out of Range for the BOOK”, if you know your own numbers, you can scream “Warning… Out of Range for ME!”

When Derek had pneumonia in 2014 he went into crisis before he showed real signs of being unwell. For him Adrenal Crisis (or low cortisol) can be his first sign of being unwell.

In 2015 when he got pneumonia (yes he has had it every year since 2012) we knew his “Normal” and once his temp showed to be out of HIS normal range we sought treatment. The problem is, for him normal is 35.9 so once his Temp hit and stayed at 37.3 (considered perfectly “normal”) we knew he had some sort of infection so sought help. We kept him out of hospital because the temp was one of the first signs. We knew HIS “normal” so were able to run with that, and get treatment underway before he became too sick.

The same thing happened this year with a throat infection. Because we know what his “normal” is, we could see that some things were off so he was already taking a bump in Hydrocortisone.

The problem was, he has no feeling on one side of his throat so by the time he had a sore throat he already had a throat infection. But, it wasn’t’ crazy out of control because again, he knew his normal readings and was already taking HC to fight what ever it was he was fighting.

How do we know his “normal”. Quite simple, we did regular checks of his BP over a 3 months period. And by regular I mean 3 times a day every day. And we charted it. We also did a 10 day Basil Temperature Check. We keep all his blood tests. I know it sounds crazy but what that means is we knew when:

  • he was over prescribed his Fludrocortisone when he first started it;
  • the fludrocortisone was becoming less affective, and therefore it needed to be increased;
  • he is low on cortisol rather than just tired;
  • he is low on salt and needs to get some more into him;
  • he has an infection that needs treatment;

Why is knowing YOUR numbers important?

If you have a chronic illness, YOU, not the Dr’s know when you need to seek help, and when you can manage it at home.

If you rock up to the hospital with a BP of 90/60 according to the books it is not a problem (maybe you need to drink a little more), but if your normal BP is 135/85, then 90/60 is a big difference and there is probably something wrong. Also, you have probably already tried drinking water. For some reason many Dr’s seem to think that you are an idiot because you haven’t been to medical school and they have (especially the young, newly trained or still training ones). If you can then turn to them and say “I know my normal, I have tried correcting this myself, I need help” then perhaps they will listen to you.

We had to do that once. A Dr tried to tell us that a creatinine level of 125 was “normal” for Derek because he had that level once before (yes, 3 months after kidney failure, which had been 18 months previous). We knew that for him normal was 110-115. She ignored us, and didn’t treat the dehydration (the 125 was a text book sign). He was admitted to hospital in Crisis and the next day a senior Dr came in, took a look at his bloods and said “put fluids up, he is dehydrated”. The same resident did not bother comparing a chest xray from when he was well, to the one she had taken that night. Had that occurred, she would have seen he also had the beginnings of pneumonia. But because she didn’t know HIS normal, she missed everything.

I wrote a complaint, not because she didn’t know his normal, but because she wouldn’t listen to us when we tried to tell her his normal.

Taking time when well, to find your normal may possibly save you a lot of stress when you are not “normal” for you.

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!

When Will the Doctors Start to Listen

I have written several times, about what happened to Derek, and why. After getting all Derek’s medical records etc, we have now sent a letter to the hospital concerned to let them know what we found out. In all their investigations of why Derek got sick, we were never once asked 1 vital question. Did he use Low Weight Molecular Heparin when they stopped his warfarin for surgery? The answer is NO, because he didn’t know he had to, because nobody told him!

It shouldn’t have taken 18 months, and a letter from us, for someone to ask such a vital question. It should have been asked before he had surgery.

Finally, after getting our letter, we got a phone call from the Hospital, and they asked about it. We pointed out that he had never before been prescribed that drug when stopping Warfarin, only when going back on it, so why would he be this time.

We have since learned about a thing called Bridging. This means that if you have a coagulation condition such as Antiphospholipid Syndrome, then if your Dr, a specialist, or anyone else, wants to take you off your Warfarin, or other Vitamin K antagonists (drugs that reduce blood clotting by inhibiting vitamin K), then you MUST have cover with LWMH (e.g. Clexaine). Before you stop you warfarin for any reason, consult your rheumatologist. We didn’t. We didn’t even have a rheumatologist looking after Derek’s APS. We do now!

What I haven’t written a lot about is the anger I feel sometimes over not so much what happened (don’t get me wrong, I am angry about that) but the way we have been treated, both when it happened, and in the ensuing 18 months.

According to a Dr I spoke to a few weeks ago, Dr’s speak a different language to us mare mortals, and in fact think differently as well. This is not new information. We have all felt it. The interesting thing was that he admitted that they “make assumptions”. These assumptions can lead to death or, in Derek’s case, near death.

When a Dr writes a script for a patient, they assume the patients knows about the script, understands the importance of the script, and therefore will know what to do with the script. It is in the Doctors psyche that, because THEY know all about the script, therefore, so does the patient. It seems beyond their understanding to actually tell the patient the “what, when, why, how long” etc. It’s on the script in code, what does anyone else need to know the info for. What made it worse in Derek’s case was that he was never actually given the script himself.  It was faxed to our local pharmacy, with instructions for the pharmacy to contact us. The pharmacy didn’t have our contact details, and they assumed that we knew about the script being sent to them.

When you have one department giving advice on the need for the script, a second person in a different department writing the script, person 3 organising where to send the script, and person 4 (yet another department)  getting the special authority because of the type of script, it is assumed by ALL that somebody else has told the patient about the existence of the script. BAD ASSUMPTION!

That is not where the poor treatment ends.

When you see your Dr, they have a set routine list of questions they ask you to try and make a diagnosis.  Some of these questions rule out illness, some rule illnesses in.  But all to often the Doctors are tired, thinking about the last patient, or the queue of patients in the waiting room, and don’t have their full attention on you.  To cut down the time you have (normally 10 miutes)  the questions asked are close ended questions requiring a yes/no answer.

Do you have pain? Yes.
Rate your pain with a number? 8.
Where is the pain? My abdomen.

It’s not often that they actually allow the patient enough time for the patient to try and explain how that pain has been in more, or any other symptoms they have had at the same time.

If you have a temperature at home, but not when you get to the Medical person, then you don’t have a temperature.   Because you can walk into the clinic/ER etc under your own steam, you are obviously ok, and not dying.

When they do examine you, they make assumptions because when they are in Medical School they have it drummed into them that “If you hear hooves, look for horses”. That is great because a lot of symptoms are straight forward.

The problem is, what if the hooves they are hearing is one lonely Zebra, in amongst the herd of horses? If they don’t listen carefully to ALL the sounds around them, they may miss that crucial different sound.

For us, that different sound was in the guise of me.

I had been advised to record everything regarding Derek’s recovery from surgery so when we were asked about his history I would pull out my phone and go day by day, blow by blow, everything that had happened. I even offered to e-mail one Dr the details.

When I read the history in the medical notes later, I discovered that half of what we had told them, had not been recorded.  They recorded what THEY thought was important.  The big things, not the little things.  But it was the little things that were the clue to the CAPS and adrenal insufficiency.

For 2 weeks I kept telling people he was not well, it was not normal, and he was worse than he himself thought.

What neither of us realised at the time was that Derek had suffered a brain injury and his cognitive skills were shot.  He thought he had a headache because he was tired, but it turns out it was because he had difficulty thinking and assessing/analysing things.

For 2 weeks they kept asking Derek the same questions. And being a male, he would say he felt fine, yes there was pain, but it was more discomfort, yes he was tired, but he wasn’t well and not sleeping so great (because of the pain for goodness sake, but he didn’t say that) so no more than he would expect.

I on the other hand, was telling them he couldn’t walk 20mtrs without needing to lay down for an hour. He was drinking water, but barely, and then only sips. He was in pain all the time (not discomfort). He would groan in pain, but didn’t tell them that.  Each time I told them something, he would play it down. If they asked him a direct question, he would stop, think, then come up with some answer that was a simplistic personal analysis of how he felt, based on what HE thought they needed to know.  Because I was not the patient, they took more notice of him than me.

Each of the medical personal we spoke to (who didn’t know Derek) would pick another of the horses running around the room and say “Oh, that’s the one I can hear”. None of them seemed to be listening to me and putting the collective sounds together to see the zebra.

I don’t know how to get it through to the medical profession (and better women than me have tried) that when a patient is unwell, they are not the best judge of themselves. And the worse they are, the worse their judgement of their own health is. You need to ask the people that know them best because they are the ones that see the subtle changes.  It’s not just a mother’s instinct about her child.  Wives also have that instinct about their husbands.

Common questions were:

Have you eaten today?   Yes.
(Truth: actually, he took two bites of something and decided he had had enough)

Have you drunk much fluid?   Yes, I am drinking all the time.
(Truth: He is taking very small sips, and it takes him all day to drink a 750ml bottle of water)

Have you got pain?   Yes, it comes and goes.
(Truth: it was there constantly, but at times it was worse than other times.  The pain included a headache which was constant, leg aches, body aches, joint aches, but mainly the abdomen.)

Again, when he was in hospital I hit the same walls. Derek was barely conscious at times, could not hold a conversation, was not drinking water properly, could not stand without assistance, and could not think clearly. Yet still they insisted on asking HIM how he felt. At times he was disoriented and didn’t even know he was in hospital, but still they asked HIM.

At one point I asked a member of the medical staff (I believe it was a nurse) if there had been any brain involvement, and I was told NO, because there was nothing written down about it. Huh? Just because nobody else had noted it, doesn’t mean it doesn’t exist!

What makes me even angrier is that the person I asked didn’t even make a note of the query. I pointed out a “droop” that didn’t used to be on the left side of Derek’s face. No mention in notes about my concerns, so nobody investigated further. The question was brushed aside.

We now know that Derek did suffer a brain injury which still causes cognitive dysfunction at times, given we now know this, how the hell was he able to answer for himself when unwell.  I had to be his advocate, and I wasn’t being listened to.

It Happens everywhere.

According to one publication in the UK in recent years, some child deaths in UK could be prevented if the Dr’s listened to the child’s mother, the person that knows the child best. When a mother’s instinct says a child is seriously ill, they should be listened to. This should apply to the Partner/Spouse of a sick adult as well.

I have become very stroppy when dealing with Dr’s now. If I don’t get an answer I am happy with, I will keep pushing. I request copies of all reports, test results, letters from consultants.

I now keep a medical file, and check the results myself.

I have learned not to trust what the Doctors and other medical staff tell me.  I check everything for myself.

An example of this happening is when Derek had been in hospital for 2 weeks  they had finally worked out what had happened to him and they felt he was ready to be discharged.  They gave him the choice of being discharged home on the Friday and going to another hospital on the Monday for a CT of his Adrenal Glands, or stay as an inpatient  until Monday, but go home on a 4 hour visit on the Sunday.

I refused to let them discharge him and send him home. I said I didn’t want him going home until he had the CT on the Monday. I still wasn’t happy with how he was. I was concerned that his resting heart rate was still too high for my liking but when I questioned it, I was told that it was fine, “it’s because he has been sick!” He seemed to be breathless extremely easily, that he just wasn’t quite right still.

It was a good call. He had a large amount of fluid around his heart which could have killed him. Again, my instincts said leave him there, even though the medical staff were insistent that he was fine.  I was proven right and they were wrong again.

In all of this, we have had 1 Doctor that listened to me rather than Derek. That is  Dr called Helen Myint. She is the one who saved Derek’s life.  She literally went from his toes to his head examining him, but more importantly, she ask ME questions and I actually felt that she listened to me.  It was this Dr that picked up the CAPS, and Adrenal Insufficiency.  Two zebra’s in a room of horses.

I just wish I had asked her about the facial drooping as well, perhaps we might have had the brain injury found when it first happened.  I have since mentioned the droopy left side of the face (especially noticeable when tired), left arm weakness, bad left foot slap which took months of physio to correct to every Dr we have seen, but it took over a year for someone to listen, and accept that yes, there was a brain injury.  Again, the Doctors didn’t listen!

My best advice is, if you think there is something wrong with someone you know well, be it child or adult, don’t worry about pissing off the Doctors, make them listen, and don’t leave until they do.  And don’t be afraid to ask for a second opinion.  You have every right, and any good doctor should value extra input.

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.

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.