A System That is Broken....

Here is a quick exercise for you:  If you are currently in the workforce, think back to the last time your boss gave you a complex task that you were having trouble solving.  No need to think that it has never happened to you, because of course it has.  Even after working in my field for 16 years, I sometimes come across problems that I just cannot figure out.  I will sit at my desk for hours (as Colleen knows) trying to come up with solutions to things that one phone call would probably solve in a matter of minutes.   But a lot of humans aren't built that way:  We are given a task, we want to solve it.   We don't want to have someone else solve it for us.   Of course, sometimes that is inevitable - you reach a point of no return, a point where you have two choices:  Throwing your computer out the window or asking somebody for help.   You likely wouldn't call your boss and tell him or her that the problem is unsolvable.  We dig as deep as we can until the project you were given is completed.

Of course, in the world of business, we are connected in ways that makes this easier - you may have a colleague in Europe that you can send an Instant Message to, getting an immediate solution to your problem. You can send out a group e-mail to literally hundreds of people in a matter of minutes and get dozens of potential solutions.  You have Google, Yahoo, specialty message boards - you name it, it exists for you as a resource.  Bottom line is that even though everyone wants to solve a problem by themselves when it is presented to them, you still have so many different ways to communicate, to research, to make your job easier.

Now, let us turn to the field of medicine - a field that supposedly is one of the most important fields you can actually enter in life.   You aren't solving problems to make sure the company books are lining up.  You are solving problems that could go as far as saving a human being's life.   You go to school for years to earn the degree, you have some successes along the way, and rise to the top of your profession in the best case scenario.  

And here lies the problem:  I can get a computer programming solution in a matter of minutes by typing a few keywords into a Google box, or by simply sending my case to a bunch of people in my field for solutions.  Why, exactly, can't doctors do the same thing?   When you are seeing multiple doctors trying to figure out a solution to your problem, why must you go through your case history 5,000 times - inevitably leaving things out along the way, causing confusion because one doctor shows you complained about one thing, while another shows you complained about something else?  In this world of technology and being able to get a real-time batting average on a baseball player the moment after he lines a single to left, why can't a doctor enter something into a computer that instantly goes to all of the other doctors you are seeing?   Would that not potentially lead to more "A-HA" moments in the medical field?

Instead, we have a system where we see one doctor at a time - all with their own specialty, many of which not caring one bit about what other doctors you have seen are telling you.  Isn't there something fundamentally wrong with that?   I do understand that an endocrinologist is not going to know everything there is to know about your digestive system, and the opposite way around.  But why can't a DOCTOR - at the core, that is what you are, after all - sit down and just listen to everything you have to say?  Take good notes, type them right into the computer, send them to other doctors, see if anyone can look at the case history in total and come up with some ideas?  Why does my wife have a million medical records sitting around in a million different offices, hardly anyone knowing a thing about what other doctors have done?  Why is it all the responsibility of the patient to keep all of this stuff organized?  And how exactly did we get to this point?  The point where my wife lost a year or two of her medical history because Hurricane Sandy wiped out the charts at the doctor's office?    Should this not be entered somewhere safe, where anyone with a mouse and a password can access it at any time?

We had another appointment in Philadelphia on Monday - and it simply did not go well.  The doctor continuously asking Colleen questions she has answered many times before in his office. The doctor refusing to really listen to what Colleen was telling him - a doctor who used the old fall back line of "Are you sure this isn't in your head?   I have seen it before!"  Of course, you have - you have seen it every single time you didn't have a solution to the problem - the easiest solution to every problem is blowing it off.  Think about the exercise above:  When your boss gives you something hard to do, would it not be the easiest thing to delete the e-mail and have a piece of pumpkin pie instead?

Isn't the BEST way to solve Colleen's problem by sharing information with as many other doctors as you can possibly find, instead of suggesting we take a trip half way across the country to see someone else?  Why not consult with these experts yourself, share all of the information in Colleen's history, and try to come up with ANYTHING that can explain her problem?   Even if you CAN'T, the effort would at least be appreciated by the patient.    If you need us to sign a waiver for this, we'll sign it - I don't care if the janitor down the hall looks at it at this point.  He or she may come up with a better solution than what we have run into.

To all of the chronically ill people reading this, remember:  It is NOT in your head.  Don't let a doctor convince you otherwise - to be exact, being told that and thinking about it will indeed make you sicker, because you will convince yourself that it is in your head.  The doctor is the expert, right?  No, not always.  Some of them are arrogant, some of them make you feel as if the diploma that is hanging on their wall came out of a box of Cracker Jack - though even those diplomas at times may feel as if they have more merit.  Never let a doctor convince you of anything - if you go to a deli and order roast beef, are you just going to trust the butcher's instinct when he hands you a pound of turkey?  Of course not - you will hand it back, and tell him to fix the order.   The same goes here - don't just accept the turkey.  Tell them they are dead wrong in their analysis, and no negative test is going to prove otherwise.

As frequent readers know, I am not just a loved one of someone with a horrible illness - I dealt with one for years myself.  I don't remember if any doctor ever gave me the "Are you sure it isn't in your head?" speech, but it probably at least entered their minds.  As it turned out in the end, it was proven it wasn't in my head.  I will bet that for 99% of you, it isn't in your head either.   It can happen - don't get me wrong.  But if you KNOW deep down in your heart and soul that your brain is not causing you to be sick, fight it - and don't ever give up that fight.    Ask loved ones what they think - especially those around you most often.  I told Colleen this afternoon that if I thought this was in her head, I would tell her that.  But I have no reason to - because I have seen this first hand, and I know for a fact this is a physical illness that has attacked her.  Whatever that illness is, we have no idea - nobody has any idea - and the frustrating thing is that SOMEONE out there may have an idea.  Finding that person is impossible, however, because the system is broken and has been for a very long time.

I'm Only Human.....

People who know me know how big of a fan of Alanis Morissette I am.    A few years ago, a new artist captured my attention - a girl by the name of Christina Perri, who has a bit of an Alanis vibe to her, while not being a sound alike (I flatly reject listening to Alanis sound-alikes!)

As usual, the above paragraph has nothing to do with Colleen's illness - but Christina's latest song ("Human") has some lyrics attached to it that can relate to many things in life; perhaps even dealing with a serious illness.  The complete message of the song is that we are all only human - we all have our limitations, our fears, our insecurities, our likes and our dislikes.    We all fall apart at times, we all make our mistakes, we are all vulnerable and breakable....but the real message (in my opinion) in the end is this:   Be yourself, and don't worry about what society or anyone else thinks about you.  (The video related to the song drives that point home perfectly:  Perri is, shall we say, a big fan of body art - and the first half of the video is shot with her body art completely airbrushed out while sitting on a pedestal, portraying the "perfect woman" everyone wants her to be....only to have the tattoos reappear at the end of the video; in a way to say "Screw you - I am who I am, and just accept it".  (Perhaps without being that blunt about it)

When someone is dealing with a chronic illness, these same types of fears can come into play; sometimes, you may try to hide your illness so that nobody worries about you; sometimes, you may feel isolated.  You may feel as if the entire world is going as fast as an Amtrak train, and you can't jump aboard.   That no matter what you do, what you say, nothing changes.    That you try to be as strong as possible, but it doesn't seem to be enough.

The bottom line is that you are only human - there is only so much you can do, and there is nothing to be ashamed about, nothing to apologize for.   You didn't ask to be sick - you didn't wake up one day, begging for someone to take away the life you once had in order to feel helpless, worn out, and completely tired of life as a whole.    You can't always expect everyone else to understand, since they aren't living the nightmare - but the nightmare is real, only it is one you cannot wake up from.

This isn't to say all hope is lost - people who are sick do get better - when it comes to conditions like the one Colleen has (whatever it may be), sometimes people get better overnight without doing much of anything to get to that point.  It is a tricky situation when you are sick, nobody really knows why, and you have doctors who just cannot help.   

You may feel down when you have to throw up when you haven't even eaten any food.  You may feel terrified when you wake up in pain, can't really describe it, and have no relief for it other than try to go back to sleep.   You may feel isolated when you are alone, while everyone else is having a good time.  You may feel as if your world is crashing down around you - as if a thundercloud is hanging right over your head, while the rest of the neighborhood is in bright sunshine.    You may look at social media, seeing how great your friends and family are doing, and while feeling good for them, also feel bad that you can't feel the same way.

All of this is natural.  If you weren't sad, weren't upset, weren't occasionally angry, and didn't ever ask yourself "Why?", I would consider you to be in the minority.

Because, in the end, you are only human.

The Easiest Diagnosis

One of my rules on this blog has always been that I will not mention names unless someone decides to ask me for it in private mail.   The reasoning for this is simple, in my opinion:   I don't want my opinion to necessarily influence whether or not someone else goes to see that same doctor.  After all, it is always possible that when we visit a doctor once, he or she is having an off day.  It is always possible that even specialized doctors have areas of expertise within their own specialty; perhaps a doctor who wasn't so helpful to Colleen can be helpful to you if your condition is in their "jackpot" zone; something they have seen before and know exactly what to do about it.   Every case is different, and no doctor is going to score 100% when it comes to diagnosing a patient.

So, why do I feel the urge to mention a name in this post?  The reason is simple:  I find the doctor we contacted to go over Colleen's possible endocrine issue to be a complete waste of time with absolutely no credibility whatsoever, regardless of what the diploma on his wall may say.     To be precise, if you live in my area, and you have an endocrine issue, and you see the name "David Kleinman" pop up when you do a Google search, don't even bother to click on the link.

Colleen made two visits to him - one to discuss her blood results, then another to discuss the results of new tests he prescribed.   To backtrack for a moment, Colleen's primary doctor ordered a cortisol test a while ago.  The test came back with very low levels of cortisol in her blood.  Low levels of cortisol can be an indicator for adrenal dysfunction, with a common cause being Addison's Disease.   Her primary recommended that she see an endocrinologist, with a few recommendations.  The first recommendation was a doctor I have seen in this area (Joseph Birnbaum), who I found to be very thorough and pleasant.  Unfortunately, they no longer accept my insurance, so we decided to go with another doctor that was on the list.   And that is how we got to where we are today.

First, Dr. Kleinman comes off as very arrogant, which actually does not bother me much personally.  If a doctor is good and can solve a problem, I don't care if they think we should bow before them due to their extensive knowledge.   However, in this case, not only was he arrogant, he didn't really seem to know what he was talking about.     When Colleen told him she had Gastroparesis, he told her that a neurologist should be the first place she should look (He saw the word "paresis" in the name of the disease and instantly thought neurology - for someone who is not a doctor, I can see this as a mistake you may make.  For a doctor to make it is just inexcusable - if you don't know what it is, admit it.  There are thousands upon thousands of diseases in the world - no doctor is expected to know about all of them.  It aggravates me more if you pretend to know something rather than just saying "I don't know about that condition".  It is tough for any patient to be honest with a doctor who is not being honest with them).  On top of that, it would have been acceptable - he is in endocrinology, and shouldn't really be expected to know much about Gastroparesis - just like I wouldn't expect Colleen's gastrointestinal doctors to know everything there is to know about thyroid disease.  (Though more on that at the end of this entry)

Second, Dr. Kleinman seems to have a one-track mind when it comes to diagnosis, unless you are diabetic with a blood sugar reading of 350:  If you are sick, and he has no clue why, it must be in your head.  He even was willing to give Colleen the name of a psychiatrist.   Even when Colleen pleaded with him that  anxiety is not her problem, he didn't even seen to flinch.   Note that this wasn't after 20 visits and completely studying her case and coming to an expert opinion that the mind may be playing a role.  This was after 2 visits without having any idea what was talked about in the first visit (he asked Colleen many of the same questions he asked the first time) and not studying much of Colleen's case at all.     Colleen will be the first to admit she has anxiety.  She will be the first to admit that health anxiety is something she has dealt with.  She will tell you she has seen a few therapists,  and even went to one recommended by our primary.   She has anti-anxiety medication.     She isn't hiding behind any of that - has been honest with every doctor she has seen.   In a way, you almost have to think about hiding the fact you have anxiety - go to the doctor, tell him or her you have no problems with anxiety, and see what conclusion they come up with.   If you dare be honest and tell the truth, some doctors seem to go down the path of "You have anxiety.  You say you are sick.  I see nothing wrong with you.  Hence, it is all in your head."    It would be like a mechanic looking at a car that won't start, not being able to figure out the reason why, and coming to the conclusion that it isn't starting because the car has general anxiety and just doesn't want to be driven anymore.  

Thirdly, yes - Colleen's cortisol numbers were supposedly normal this time around.  Dr. Kleinman instantly came to the conclusion that her adrenal function must be fine because of this, completely ignoring the results of her first test.  What if the second test is the wrong one, and not the first test?  How exactly would he know?  He doesn't.   And this is another reason why some doctors are just not useful:  They look at numbers on a sheet of paper and decide if you are sick or not.    Not only is this lazy, it is borderline criminal.   This is not to say blood work should be avoided - of course not - but the results in the hands of the wrong doctor can still be dangerous.     BLOOD WORK NUMBERS ARE NOT DIAGNOSTIC.  This is why we have doctors (supposedly) and not just a robot that comes into the room, draws your blood, and leaves.   Blood work numbers are a guide - something that can lead a doctor to further investigate your condition, if warranted.  If they come back normal, that doesn't mean the person is healthy (The opposite is also sometimes true: An abnormality in blood work does not mean you are sick.)   When a number comes back abnormal, it  means "Here is a red flag for you, doc - now see if it means anything".

Fourth (yes, there is more), Dr. Kleinman didn't even know who Colleen was when he walked in today - and read off the script he had for ANOTHER patient of his when he first walked into the room.  That is right, he started talking to Colleen as if she was someone else.   Look, people make mistakes - don't get me wrong - if he was a good doctor who one day made this mistake, we would have laughed it off.  When I was sick, the doctor's office once placed the results of someone else's testing in my chart - a strange coincidence, it turned out.  Both of us received a specialized blood test at around the same time, and his results ended up in my chart accidentally.   I was even called in to talk to the doctor immediately at the time.  If this doctor was incompetent with me in the past, I may have flipped out - but she wasn't.  It was a mistake - nobody likes mistakes being made when it comes to their health, but it happens.   But when an incompetent doctor makes a mistake like this, it gets magnified - it reassures you that the doctor has no idea what he is doing and is just waiting to move onto the next patient on his schedule.

Seriously, the nurse who took Colleen's blood pressure today may have been in the room for a longer time than Dr. Kleinman was today.  "Your tests are normal, you have anxiety - your issue is anxiety.   The bill is in the mail"

To get back to a point I made above, wouldn't it be nice if most specialists understood conditions that go beyond their specialty?  I think some do - I think Colleen's gastrointestinal doctor likely has knowledge of how different things can impact her stomach condition.   But it just appears that many doctors just don't want to take the time to piece together the entire puzzle.  You end up having an endocrinologist looking only at adrenals and coming to his conclusion.  You have a gastrointestinal doctor looking at only the digestive system and coming to his conclusions.  You have a primary who is looking at all of the numbers from all of the tests and trying to reach his own conclusions.  You may have even more doctors than that - all with their own charts, all with their own conclusions, all based on their specific area of expertise.   There is nobody looking at the entire puzzle, sitting down in a chair for a few hours, trying to figure out what the answer can be.  It is like having two detectives working on the same murder case and not comparing notes.   It just doesn't work - no one person has every piece of information in front of them, trying to figure out if there is a condition that can connect everything.   Perhaps there is nothing that jumps out as obvious - but it would be nice just to have someone who will try.

It is times like these that make you want to sometimes give up on the medical field as a whole; and I don't mean to get down on every doctor Colleen has seen.  I find a few of them to actually be helpful and useful.  But the majority of doctors she has seen have not been useful, and that is a serious problem.

Today's doctor, however, took it to a new level of incompetence.  Some of the doctors we thought were incompetent in recent years suddenly looked like geniuses compared to this guy.    It was simply a bad day that left a terrible taste in both of our mouths.

The Endocrinologist Visit

Someone reading this blog for the first time may be a bit confused by the title of this particular blog entry, and I can see why:  Gastroparesis and Endocrinology do not appear to really mix very well.     The endocrine system does not include the stomach, after all - it includes the glands that control hormones (thyroid, pancreas, etc.).    However, the endocrine system (like many systems in our bodies) is quite complex - and the stomach actually does perform secondary tasks for the endocrine system.   This is where I sometimes think "specialists" can actually end up not being as useful as you would hope; especially specialists who may be unwilling to think outside the box.  The cause of your stomach issues can come from many different sources.  It is like a pinball machine - you may aim for one section of the board you wish to hit, and it causes a chain reaction, where it bounces all over the board, including places you did intend for it to go.   The same type of thing can happen to your body - one system goes out of whack, and it causes a chain reaction where many different things start going wrong.   

As I mentioned in a previous post, Colleen had one test which showed a very low cortisol number.  As I have stated many times in this blog, it is just a number on a page - in and of itself, a number that shows up on a blood draw is essentially meaningless.  No doctor can look at a number and tell you that you have a disease, or tell you that your are healthy.  Numbers are a guide - and always remember one thing about the "ranges" you see on the side of the page:  Those numbers weren't just picked out of a hat, nor are they 100% reliable.  They are statistical - you look at people who are healthy, see what their numbers are for various factors, and come up with a suitable range.   It is very possible to be 100% healthy and have numbers slightly out of range.  But the reverse is also true:  You can be sick as a dog but have blood work that looks normal.  No doctor should tell you that you are healthy or sick based on a blood draw - IT IS IMPOSSIBLE.

As for Colleen's visit, we didn't exactly learn anything revolutionary - however, the doctor did seem knowledgeable in his field, which is the most important thing at this point.   Many specialists can come off with a bit of an attitude - the attitude that "I am the specialist, you are the patient - just listen to me".  In some cases, I understand where they are coming from.  However, a doctor should always be willing to listen to a patient who questions things.   Patients indeed are not doctors, nor are most of them medically trained.  They should have the right to ask questions about treatment options, etc.   Being someone who is good at computers, if I recommend to someone that they should replace their hard drive, their first instinct shouldn't be "Sure.  I'll do it today!".  The first thing out of their mouth should be "Why?"    That is how the doctor-patient relationship should work.   Patients should be allowed to ask why - and shouldn't be afraid to do so.

Anyway, as I said above, one cortisol number was not going to lead to anything revolutionary.  Colleen now has to take a second cortisol test, including a 24-hour urine test.  It likely is as tedious as it sounds.   The problem is we have been hit with some snow in this area, and she has to do the test in a fashion where as soon as she is done, she has to get the container to the lab.   We can't sit on it for a day or two.

There are a few other things he seems to be looking for; I don't know if any of these tests would give us a clearer picture on diseases such as Addison's Disease, but I do think he is following protocol with what he is doing.  Colleen will see him again in a few weeks.  It is possible that she will once again be referred to a university hospital for further testing.

I hope everyone enjoyed their holiday season.  And since this is a blog dedicated to health, here is to a healthy 2014 for everyone.......

Communication is Key

As a loved one to someone who has a terrible disease, you may often try to downplay some of the stuff you are going through in your own life, to the point where you don't even communicate those feelings to your sick spouse.   After all, nothing you are going through compares to what they are going through.  They are lucky sometimes to get out of bed on their worst days, so how can you even think about complaining about your job, or the fact that it is raining, or that you can't get past a Candy Crush level?    Of course, I wouldn't probably recommend complaining too much about a game, but you get the point - everything in your mind seems trivial compared to the person who is sick.   You will get into your own mind that you can work everything out yourself, and move on without even your spouse noticing you were having a problem.

Here's the thing:  You have likely lived with your spouse for a long time - perhaps even years.  A small change in your behavior - even if you don't personally see it - is going to be noticed.    It is almost impossible to "fake" being OK, because your body is going to naturally do things that show that you really are not OK.

I say all of the above, while recognizing that in this instance, I don't practice what I preach.   That has always been the case; even before Colleen got sick.  I don't communicate my feelings very often, especially when the feelings are the not-so-good variety.    It is easy for me to express my love, my gratitude, and all of the finer points.   But put my back up against a wall, and I internalize it - at times, it would be easier to go into a jungle and lift up an elephant than it is to get anything out of me.   It is a part of who I am, and how I am built - is it healthy?  Not in the least bit.

Bottom line is that communicating with your loved one is a key for them to get through their disease as well - sometimes switching the focus from what they are dealing with to something you may be dealing with can actually make them feel a little better.   They can release all of their dreaded thoughts and concentrate more on what you are going through.   In the end, you have to try to get it out of your own mind (I never would say this is easy - because I can't do it myself) that your problems are trivial compared to your loved one's problems.    This is actually quite true, but you shouldn't simply minimize what you are going through in your own life in order to protect your loved one.

They will catch on.

An Antibiotic A Day......

As you may have figured out by now, I often need an inspiration for a post entry - sometimes that inspiration comes from a place completely out of left field and unrelated to Gastroparesis itself.  In this case, my inspiration came from my niece's recent diagnosis of a strep throat.

There is only one way to really cure a strep throat - through the use of antibiotics, and that is what my niece is taking.   Antibiotics are not necessarily "bad" drugs.  They can treat many horrifying conditions, and have been a life saver for many people.   When you have a bacterial infection, something designed to kill that infection is logically the way to go.

However, when you are dealing with a stomach condition, antibiotics can cause all kinds of havoc. To be exact, there is a theory that Colleen has that taking an antibiotic to cure a case of the shingles years ago may have contributed to where she is now.

Antibiotics do not discriminate when they go into action.  In addition to killing off the bad bacteria that is causing your illness, they also kill off beneficial bacteria within your system.   In some cases, an antibiotic is not necessarily designed to kill bacteria - some are designed to stop bacteria from growing.  This is the case for a drug Gastroparesis sufferers all know a lot about:  Erythomycin.     This antibiotic is often prescribed to Gastroparesis sufferers, but not for its bacterial benefits.   Rather, it is given because it is proven to have prokinetic properties.    This drug doesn't necessarily have a tremendous track record in the treatment of Gastroparesis, and it does sometimes have me wondering if it is actually doing more harm than good in the overall landscape.      Remember, nobody designed this antibiotic to cure or even treat Gastroparesis, and that in itself can lead one to hesitate before going on a consistent regimen.  

Think about that for a second:  You have a terrible stomach condition, so the doctor prescribes you a drug that attacks bacteria (both good in bad) in the region of your body that you are having trouble with.   Unfortunately, drugs cannot be programmed.  The doctor can't flip a switch in an Erythomycin pill that tells it to only help contract the stomach while leaving bacteria alone.

This is not to say that Erythomycin cannot work for you or anyone who has Gastroparesis.   Sufferers of this condition are desperate to find anything that can give them relief, and if this drug can provide that for you, I would not tell you to stay away.

By the same token, you need to be somewhat careful when using anything that takes good stuff out of your body.   Because of that, some doctors may recommend you take a probiotic - in theory, this is a great idea:  All the bad bacteria is forced out of the body, now let us reload it with the good stuff.   You can get over-the-counter probiotics, but another great source of probiotics comes in the form of Kefir, which is essentially liquid yogurt.   Colleen takes this every day, and doesn't even need to take a large amount of it.  (For the record, she is not on any antibiotics - she takes it because it is a part of a program she is on to try to get rid of the evil disease inside of her).

There has been debate on whether or not you should take a probiotic during antibiotic treatment or after.  I was under the impression that you should take it afterwards - after all, the antibiotic will just kill the good bacteria you are putting back in your body, right?  The answer in reality is that it actually doesn't seem to matter and it may be beneficial to take the probiotic during treatment.

Regardless, just remember that there is no cure for Gastroparesis - and that no antibiotic that has been formulated was designed to cure Gastroparesis.    If your doctor wishes to put you on Erythomycin (if you have Gastroparesis, this is a given), follow instructions carefully.  Typically, you will not want to take this like you would if you actually had a bacterial infection as your body will become immune to it.

In the end, it is my personal belief that antibiotics should only be used for what they are designed for:  To cure bacterial infections.  They shouldn't be used for viruses, and they probably should not be used for something like Gastroparesis.      I am not an expert and nothing close to being a doctor, but I do like to say that fitting a square peg into a round hole typically doesn't work in the long run.  

A Bit of Mind Over Matter

Today was our annual "Christmas Decorating" day - or, shall I say, it was Colleen's annual Christmas Decorating Day.  She doesn't really want or need me to do very much.  If I strung the lights outside, she would inevitably find something she doesn't like and redo them to her taste.  She is a perfectionist with Christmas decorating.  Luckily for our marriage, I am not - so it is very easy to have her take over the reigns without any pushing back.    Anyway, my mission today was to go out to Target and Lowe's to try to find additional lights that have caught Colleen's attention this holiday season.  Of course, today was December 7th, and the only stuff left in the stores was the stuff that nobody wanted.   Perhaps there is an Island for Misfit Lights that is next to the misfit toys from Rudolph.

Coming home with nothing is always a bit of a downer for me - I am the type of person that is more than willing to drive all over town, going into various stores, just to find the one thing that Colleen or myself wants.  I like the hunt, I guess you can say - if the product is on the shelf, I am going to find it somewhere.  

After I came home with nothing, I believe a bit of an urge came over Colleen - the urge to find those lights she wants to add to her already impressive collection.   That urge lead to the point where she decided to go out and try to complete the mission herself - with our dogs and myself waiting back in the car at every stop.  And, of course, complete the mission she did - as we went to another Lowe's that had more stuff in stock than the one I went to.

When you are sick, there is always that feeling that you simply cannot go anywhere.  When that sickness involves a horrible sensation in your stomach, it makes it even worse.  Your mind goes to places such as "What if we are 20 minutes away from home, and I suddenly get so sick that I have no choice but to throw up in an aisle somewhere?"   There could be more to it than just that - if you haven't been out in a while, the whole situation of needing to get ready in and of itself can be daunting.  When you are ill, you simply don't want to deal with stuff like that.  As I have said a few times in this blog, the one thing I can relate to with Colleen is being sick for a long period of time.  I remember the days when leaving the house simply wasn't appealing to me - my thought process being that it would do me more bad than good.    

This is where mind over matter can come into play - my inspiration for this post came from something Colleen herself said:  "I was browsing through the stores, and I wasn't feeling sick - because I had something else to occupy my time...to concentrate on".   This is so very true - when you are sick in bed for hours or days, the only sensation you feel is "sick".   When you get out of bed to do other things, the sensation of sickness may alleviate - it is still there.   It isn't that you aren't sick.  It is just giving your brain a break from the constant thoughts of illness.

If you ever feel this way, one thing I don't want you to think about is whether or not someone will look at that and say, "See, you aren't sick - you were able to accomplish so much today!"  This is not the place you need your mind to go; to be exact, you need to 100% not think about that in the least.  Doing something that you enjoy doing or something you want to do shouldn't come with feelings of what others would think when you actually do them.   That is a vicious cycle that is impossible to break.  "If I go out looking at Christmas lights, everyone is going to think I am healthy again - instead of dealing with that, I will just not do what I want to do".  That kind of thought process will never work for you - because going down that path will just make you feel worse, and won't let you break out of the vicious cycle you are in.

As a loved one, my advice is simple:   When your patient is feeling the need to do something they really miss doing, lightly encourage them to do so.  Never try to force the issue, but also don't discourage.   One step to breaking the curse that illness puts on people is to not always let it win.   That isn't easy, and it can't always be accomplished.    But on days when it can be accomplished, do what you want to do - and don't worry about what others think.   In the end, what they think means nothing - how YOU personally feel is what is most important.