Another Trip Down I-95.....

On Monday, Colleen had her latest appointment in Baltimore.  As I have said a few times, the drive to Baltimore from New Jersey really goes by fast - there is one section of road (Route 70) which Colleen knows I am not terribly fond of - but the rest of the trip is fast and straightforward, two things that I like.   We hit a few traffic jams along the way, but we made it to the office only a few minutes after the scheduled appointment.

We saw Dr. O'Brien-Clarke rather quickly, as he didn't have his assistant by his side today.  We figured either she only observes during initial consults or is perhaps a student who observes when she isn't in class.       Once again, we left the office rather impressed.  I am officially at the point where I would say if you live on the East Coast and can get to Baltimore, this is the guy I would see if you have a bad motility/gastrointestinal issue.  No, he isn't a miracle worker who is going to fix you in five minutes - Colleen has seen him twice and isn't "fixed".    He simply has the perfect combination of bedside manner and knowledge.  Some doctors are nice, but don't really know what they are talking about.  Some doctors have knowledge, but lack general people skills.  That isn't the case with this particular doctor - he is both pleasant to speak with and knowledgeable.  Colleen threw a bunch of questions his way today, and he was happy to see that she was researching her condition. He was also happy to answer every question she had, and was able to give insightful answers to everything she had to say.

As you all know, we have run the gauntlet here - does Colleen have Gastroparesis?  Does she have something else?   The most important question I have, however, is:  Does it even matter?    Gastroparesis is just a label that is placed on a disease that has a myriad of different symptoms for different people.   Colleen may technically have it based on the fact that the definition is broad.  You can probably have one of 100 different symptoms, one test that is slightly (or worse) off-center, and boom!  You get the label.  

Imagine this scenario:
Doctor:   "Patient, you have cancer"
Patient:  "Where?  And how bad is it?"
Doctor:  "I don't know - this one test we have shows you have cancer, so we will go with that"

The day has to come when we don't just say "You have Gastroparesis", but we are able to go further than that:  "You have Gastroparesis - we know exactly where it is, what is causing it, and which treatment plan will work best for you".  There is one form of Gastroparesis that has some of those answers:  The diabetic variety.   If you have diabetes and Gastroparesis, you likely have your cause, for what that is worth.  But for other forms of the disease, there is nothing concrete on what the cause may be.  In Colleen's case, it may have been a virus that hit her a few weeks before the condition started.   But is there anyway to PROVE that?  Not really.

Here are a few others things discussed today:

NIH Trials - Colleen qualifies for trials being done by the National Institutes of Health in the research of Gastroparesis.   While these trials are not necessarily diagnostic in nature, the hope is that they can further understand the disease through some new tests and procedures.   Colleen is interested in it, and will be receiving more information about it in the coming days.  The tests are typically done over a two-day period with questionnaires that need to be filled out as she goes.

Bethanechol - This is a bit of an "old-school" type of treatment.   Used mainly to treat issues with the bladder, it also has worked to varying degrees for some Gastroparesis patients.  This is not a true "prokinetic" drug that increases stomach emptying, but stomach emptying is not the big symptom that Colleen experiences.   Its main purpose is to increase muscle contractions in the stomach, which could have some benefits for Colleen.  The worst part about this drug are the side effects (pain, for example) - the best part?  It works quickly.  Patients will know within a few weeks whether or not it is actually helping them.   The fact that the time commitment is relatively short makes it something Colleen wants to try out.

Her next appointment isn't until April.  In the meantime, she will try this new (which is actually quite old) treatment along with her Lyrica (which has done a great job managing her pain) to see if it makes any difference at all.

The Holiday Season Is Here.....

It has been a while since I have written an update, and I apologize for that.   Most of what has been going on with Colleen remains the same.  The Lyrica she has been taking has helped with her severe pain and cramping, so that is one positive - but, as is the case with many drugs, it is masking her symptom of pain, not curing it.  That said, if someone invented a drug that took away everything Colleen has been feeling, she wouldn't care if it was just a mask instead of an actual cure:  She would be able to get her life back.

We will be back in Baltimore on Monday, December 1st.  I will let you know what the doctor has to say.

When I first started writing this blog, I typed a few posts about the holidays and how they can be one of the toughest times for people who are chronically ill, especially with a never-ending stomach issue that has completely sapped you of all of your energy and your ability to do the things that once-upon-a-time were routine.  For Colleen, the routine would be baking a pumpkin pie on Thanksgiving Eve, baking cookies and wrapping presents on December 23rd, etc.  This is not to say she doesn't partake in other routines we have done through the years:  We do our annual "Christmas Light" tours around town (which is typically a mix of "Nice house!", "What the heck were THEY thinking?" and "Such a huge house - and they don't have one freakin decoration outside?")   Hey, it is the spirit of the holidays, right?   She also still does her outside decorating, typically on the coldest day of the year (not sure if that is just tradition or plain bad luck).

The point here is that for people who are very ill, sometimes the little traditions can still go a long way in an attempt to make the holidays feel "normal", even when they are not even close to being as normal as they once were.   

As a loved one, this may be tough to watch, especially if you are experiencing it for the first time: "Oh my!  He/she was once so into the holidays, but this year, they just don't have their usual spirit!"

What does the sapping of the spirit typically come down to?   Well, for someone with a sick stomach 24/7, the sapping of the spirit typically comes from the fact that holidays are filled with one more tradition: Food.  And lots and lots of it.  The very thing that helps bring families together during this time of the year is Kryptonite for many with Gastroparesis, or any disorder dealing with the digestive system.    

But it goes beyond that - because they can't eat like a normal person can normally eat, their energy is sapped.    And when their energy is sapped, it can affect their desires - think about the last time you went 24 hours or so without sleep.  That happened to me recently, and I was down for the count for 12+ hours when I finally was able to get to bed.  Now, you have to think about having that type of feeling almost constantly; a low energy level coupled with a bad stomach which could be leading to other issues within the entire body.   I always talk with Colleen about the "vicious" cycle - and that is the best way to put it.  When you have a disease of the digestive system, it doesn't just affect the digestive system - the human body is designed in a way that everything needs to work together in order to have a healthy outcome.  If one "switch" gets turned off, your body is "smart" enough to know to try to compensate - but just like in real life, that can only get you so far and eventually, the entire system starts going haywire.  

So, what does one do during the holidays if you are caring for someone with any horrible disease?  It is hard for me to speak about that in general, because everyone is different.  Even people within the Gastroparesis spectrum are different.    But just be aware that you should take care of the needs of your loved one, first and foremost.  If your loved one is too ill to attend a family get-together, you need to understand that, and not resent it.    What you can do (and is something I kinda like to do) is encourage the activities that your loved one can partake in RELATIVELY easily.    Whether it is going out looking at Christmas lights, or a stroll through a store, or whatever the patient is in the mood for on that particular day.   

The bottom line is to remember the fact that as hard as it may be to watch a vibrant, full-of-life person fall down due to a terrible disease, that the person suffering the actual disease still has it many times worse than you.    We all have little, petty complaints in life - heck, as Colleen knows, I still have mine.  But life should take on at least a bit of a new perspective when you are watching as your loved one is in bed, or throwing up, or feeling uncontrollable nausea, etc.  The list goes on and on - pain, feelings of fullness, nausea, trapped gas, not going to the bathroom for days at a time, etc.  Colleen doesn't suffer from all of that, but the symptoms she does have are still what I would consider severe.  And this is now a three-year journey - not a 1-week case of a bad flu.

Have a happy and safe holiday season - remember, you don't have to make a choice: You can have both a happy holiday season combined with the feeling of sadness that your loved one is not having such a happy season.    The bottom line for you is this:   Even though your loved one is suffering, you can still try to make it a very happy season for them.  Sometimes, the little things can go a long way.  And in the end, whether sick or healthy, aren't the little things typically what matter most?

Live Blogging From Baltimore: Upper Endoscopy and Endoscopic Ultrasound

11:15AM Arrived here in pretty good time.  Was expecting more traffic this time than last time, but it never materialized.    Getting into Baltimore is so straightforward.

11:30AM Automated check in?   Sign me up for that!     Such an efficient hospital.

11:45AM They have a big screen where we can track the patient's progress throughout the day.  Can we get ESPN on that?

11:50AM Colleen's procedure begins at approximately 1PM.

12:03PM Colleen has been taken back to get ready for her procedure.   Procedure itself takes about 30 minutes.   Prep and recovery takes about 40 hours or so.    It is like when you go to Great Adventure to go on a popular ride - a million hours of waiting just to get on the 2-minute ride.

12:06PM As for Colleen herself, she of course is a bit anxious about the procedure and wasn't feeling great this morning.  She got through the ride here OK though.

12:11PM So, what is the procedure Colleen is getting done?  This explains it better than I ever could:
http://www.medicinenet.com/endoscopic_ultrasound/article.htm

12:22PM The receptionist actually walks around to make sure everyone is being taken care of?  In Philadelphia, the receptionists were nice and all - but they were pretty much "Have a seat - we'll come get you whenever"

12:32PM A lot of people here.  Some are on their iPhones, some are on their iPads, a few are on laptops, and one is reading a newspaper.   There are also a few that refuse to give in to modern times and are actually reading books.  They still make books?

12:40PM Someone just asked the receptionist if she validates parking.  Yeah, and she can renew your driver's license while she's at it.

12:42PM I want to thank those who have been playing Words with Friends and Dice with Buddies as I wait.   Isn't Words with Friends interesting?  Something like SUQ is a word - meanwhile, WXTZ continuously gets rejected.

12:43PM This guy is behind me humming.  Rather annoying.

12:45PM This woman is showing around a new employee and told him one of his main responisiblities is to feed the fish.  I WANT THIS JOB!  

12:51PM I am bored so I decided to start liking a bunch of Facebook posts.   You just had a grilled cheese sandwich with your best friend from high school?  LIKE!

12:52PM So what did we do with the dogs while we are away for the day?  Josh and Jeter have full access to do what they want, while Alanis has to be in a crate...otherwise we'd probably come home to torn walls, torn toys, relocated furniture, and a missing sneaker or remote control.  She's a wild one, I tell ya.    We did block off the upstairs to "force" the boys to stay downstairs in her vicinity, hoping it helps keep her calm.  First time she has been home in her crate while both of us are out.

1:00PM I just read the Impusive Buy.  Archer Farms now makes a pumpkin doughnut muffin.  What in the heck is a doughnut muffin?

1:05PM According to the Big Board, Colleen hasn't yet been admitted into the operating/procedure room.....

1:26PM Colleen is now in the procedure room....fingers crossed.

1:34PM A pet peeve of mine is when someone sitting close to you decides to get on their cell phone to talk to someone about personal stuff.  Go outside, or hang up the freakin phone.  Of course, I can just choose to ignore...but what fun is that?

2:00PM The big board just turned red...indicating that Colleen Is in recovery....I will hopefully be called back there soon.

2:18PM Now in the recovery room with Colleen.   Sore throat from the tube they placed in her throat, and still barely awake.

2:40PM The nurse Colleen has is very nice and talking with us about the Jersey Shore.  Colleen's blood pressure is low...so we are waiting for it to normalize a bit.

2:50PM Doctor saw Colleen.  She has a small cyst on her pancreas which isn't considered much of anything.  They took samples for a biopsy, but those results are not yet ready.  We will find out in a few days.  As per usual, it is a relief that they didn't find some life-threatening condition - but still leaves the mystery on what is going on inside of Colleen.

2:55PM Last time we were in Maryland, we were caught by a camera that measures speed and got a ticket in the mail.  Let us hope that doesn't happen today.

3:00PM Blood pressure has normalized a bit.  She should get discharged shortly.

3:10PM We are on our way out....

7:00PM (or so) After waiting seemingly forever for some woman to pay for her parking, we got on the road and we are now home.  The patient is not feeling her best, but she got through the day, which is important in its own right.   The dogs were good - no accidents from our newest addition.  Josh and Jeter were their typical good selves.  More as we learn more - next trip to Hopkins is not scheduled until December.

A Summary of Sorts.....

Over the past three years, Colleen has gone through many different doctors, approaches, etc.  She has been through so much that sometimes things could even get confusing in this blog - mostly because we have done a lot of jumping around from one thing to the next, often ending up at the same point we started at.

And that is one of the major issues Colleen has been dealing with:  The fact that we can't even find the path for her to go down.   You can't run a marathon if you are having difficulty locating the starting line.

Here is a summary of a lot of the stuff Colleen has done over the past several years, and some thoughts about those things.  This is in no particular order.

Temple University (4 stars out of 10) - As a disclaimer, supposedly Temple has hired a well-respected doctor to their mix recently, but Colleen has obviously not seen him and hopefully won't need to.  I am basing my rating solely on her experiences at Temple.  It wasn't all bad - they ran a bunch of tests, and Dr. Fisher (who is retiring) did have a broad understanding of Gastroparesis and conditions in general.  What he couldn't do for Colleen is go that extra mile in an attempt to find out what was really going on.   They seem to operate under the assumption that tests will reveal all, and if they don't, they can't help you.   Bottom line?  I would probably recommend Temple to those who have a diagnosis etched in stone and need to know their treatment options.  If your condition is a little more complex than that, you likely will run into a brick wall.

William Van Wyck (7 stars out of 10) - He is our PCP, and he is a rather good one.   At this point, he can't be of much use to Colleen beyond giving out recommendations on specialists.   It is telling, however, that after a few bad experiences with "specialists", Colleen decided to go back to him.   Colleen is beyond what he can do at this point, but as a PCP, he does a good job.

David Kleinman (0 stars out of 10) - Colleen wanted to get an endocrine doctor's perspective on her condition, and ended up running into the worst doctor I have ever experienced in my lifetime.  No knowledge of anything that I could see, mixed up Colleen's chart with someone else's, and (as we found out later), ordered a test to check Colleen's cortisol levels that was NOT A VALID TEST for her to have.  Completely and utterly useless - I don't know how he is even in practice.  If he had good bedside manner, I would throw a star or two his way - but he doesn't even have that.

"BodyScan" 2010 (0 stars out of 10) - There are people out there who simply love to profit off of the sick - I hate to even think that this is the case.  That people who have these types of devices actually do think they are helping you, when the reality is they are not.  They have you sign forms that basically say what they are doing is not meant to treat, cure, etc. any diseases.  Then what is the point of your "practice"?  Here is what they do:  Hook you up to a computer, watch as results pop up on the screen, recommend marked-up supplements that they conveniently carry, etc.  He even told Colleen he can do a procedure (hernia adjustment) that he really couldn't do (and didn't do when Colleen went there specifically for that purpose)   He tried to claim that Colleen had all of these other things wrong with her not related to the stomach, but as soon as Colleen told him her stomach was giving her problems, suddenly his "tests" showed that her digestive system wasn't right.   I try to be an open-minded guy, which is why I too can fall into these traps - don't do it.  If anyone guarantees you that you will get better or tries to sell you on how many other people they have helped from all over the world (don't dare ask to talk to those people - perhaps we should have asked), run away.   There is no procedure, device, etc. in the world that guarantees anything when it comes to a health problem.

Acupuncture (8 stars out of 10) - During the first round of Colleen's journey, acupuncture was the one thing that seemed to work quite well for her.  However, after she was "healed" and feeling better, she was attacked again by this mystery ailment, and acupuncture did not help as much the second time around.  I do think there is a place for this, however, and would recommend it to anyone who wants to try something "alternative" that isn't too far off course.  Many western doctors now accept it as legitimate, and Johns Hopkins even has an acupuncturist on staff and is willing to share his protocol to any local acupuncturist you wish to use.   That is the key - making sure those needles are hitting the spots that truly need to be hit.

Prosperity Health Center (7 stars out of 10) - Unlike some places (such as the BodyScan above), this center doesn't make any guarantees that you will "cured" within X number of weeks or months.  What they can do is get you on the right track for healing through various techniques, including acupuncture, chiropractic care, and herbal remedies.  One of their mottos is that they don't try to relieve your symptoms - they try to improve your life by using some of the techniques above.  I think they are very reputable, that the staff is extremely friendly, and Dr. Kuan is more than qualified.  Colleen doesn't go here anymore, mainly due to the distance but also because she wanted to try something different locally.  Plus, some of the herbal mixtures she was given caused some problems with pain after they did their job.   I would still highly recommend them, because it most certainly does not scream "SCAM!"   Colleen had paid for future visits before deciding to not go anymore, and they gave us a full refund.

Johns Hopkins University - Dr. O'Brien-Clarke (9 stars out of 10 - but still incomplete) - We have only been here once thus far, with a second appointment (for a test) in a few weeks.  Based on the one visit, you can see why they are often rated among the best (if not THE best) hospitals in the country.  The staff is extremely friendly, the doctors are very knowledgeable, and they have a solid system set up that makes sure the doctor has all of the information in his hands before he even comes into the room to talk to you.  I loved this aspect.  You get 30-35 minutes of a doctor's time, if you are lucky - you want it to be useful to you AND him - not just a rehash of your prior medical history.   We don't know yet how this story will end, but I do like the facility and the fact that the doctors are willing to think a bit beyond just a test score.

Stanley Hsu (0 stars out of 10) - Gastroenterologist that Colleen saw earlier in her journey.  I can't comment on how he is with other conditions, but he knows nothing about Gastroparesis - his first comments were about how young Colleen is (Gastroparesis can strike anyone of any age). He followed that up with comments about her not being diabetic.   It is a condition common in diabetics, but is not restricted to them.  Overall, a waste of our time - but I can't comment on anything else he specializes in.

Diane Fresca (8 stars out of 10) - Our second endocrine experience was much better than our first.  Even though Colleen's condition appears to be digestive related, Dr. Fresca still took her seriously, asked a lot of questions, ran a battery of tests - and also explained some of her thoughts on thyroid disease.  She did a complete thyroid panel (which came back clean), plus ran a test for a rare stomach condition that I assume came back clean.   She is also the one who pointed out that the cortisol test Colleen did was the wrong test that would not give an accurate profile of her true cortisol levels.  She ordered the GOOD test, which Colleen still hasn't had.  So, even though Colleen may not have an endocrine issue (we still aren't sure), I will still recommend this doctor - she knows what she is talking about and has good bedside manner.

Teresa Tacopina (6 stars out of 10) - She is Colleen's local gastroenterologist, and the doctor she has seen the most about her condition.   While probably not an "expert" on Gastroparesis, she also is not a novice - she has treated many with Colleen's condition.  Her bedside manner is good, and she is willing to think outside the traditional box (even recommending acupuncture early in Colleen's journey).   She loses a few stars due to a recent appointment, where she prescribed Colleen a drug that Colleen already tried and rejected. (It wasn't the same drug - but it was in the same class).  By the same token, Colleen asked her if she could attempt to try a different drug she hadn't tried before, and Dr. Tacopina obliged  I guess in this case, there is some good and some bad - but as a primary, local gastroenterologist, she is more than capable.

Russell Mariani (2 stars out of 10) - This is the first person Colleen encountered when seeking a more "radical" approach to her condition.   The cost is high, and he doesn't really offer many insights that go beyond what you already know.   So, his "program" is good - it isn't junk science or voodoo magic, but it is also rigid, and he has the personality of "my way or the highway", which is a bit obnoxious when he charges such insane prices to get on his program.  If he is unwilling to adjust based on each individual need, it becomes a situation where his program will help a few - just like the broken clock being right twice a day.

Essential Oils (No rating) - Have essential oils helped Colleen?  It doesn't appear to be the case - though they have helped others with a variety of conditions beyond just digestive issues.  Because of that, I can't say it is a big scam unworthy of your time.  All I can say is that they haven't really done much good for Colleen's particular condition.   If you need to try something new and different to potentially get relief from what ails you, it can't hurt to try them - and because I don't see them as a voodoo scam, I would even say they can help people - just not everyone.

There may be other people Colleen has seen that I have already forgotten about - there have been so many, after all.  There is another doctor she saw in the beginning of her journey, but I forget his name.  He knew a lot about Gastroparesis, but was trying to sell Colleen on getting the pacemaker which she likely does not need.

As I have typed many times already, we don't even know exactly what Colleen has - and that is the major sticking point we have run into through the years.  We are hopeful that Johns Hopkins will figure something out for her.  Only time will tell there.

A Trip to Baltimore: Best Doctor to Date by a Longshot

Over the past several years, Colleen has cancelled an appointment or two at Johns Hopkins in Baltimore, and for good reason:  The drive is long, she has been consistently sick, and she thought she was under the care of a top physician in Philadelphia, which is a fraction of the time that it takes us to get to Baltimore.

Our house is just under 3 hours or so from Baltimore - at least to this location in Baltimore.   Her appointment was at 8AM, meaning departure time was at 4:15AM.  In the end, we actually left closer to 4:30AM after we got ourselves situated in the car before leaving on our journey.  Colleen and I are night owls, and I often don't fall asleep before 4AM, never mind waking up at 3:30AM for a trip to a place we have never been before.   Colleen says she barely got an hour of sleep - I likely got 2-3, if I was lucky.   

The best part about this trip is the ease - getting to Baltimore requires no special instructions beyond getting on Route 95 and just driving...and driving...and driving.   Johns Hopkins is right off of an exit - no twisty roads to navigate.  You get off the exit, you are pretty much there.

The facility itself is impressive - it is modern, it is clean, and the people are beyond friendly.   I even asked Colleen if the staff there is paid to be friendly.  Not only did a woman ask us if we were lost trying to find the reception desk after seeing the doctor, she even walked us there!   What is that all about?  The receptionists are all nice, the nurses don't act as if they would rather be elsewhere, the doctors are personable.  It was like we drove into some sort of alternate universe on our way to the hospital.  We have not, in our journey, met up with a nicer set of people.

Colleen was checked in without a hassle, and saw her first nurse at around 8:05.   She has a thankless type of job.  Take your temperature, your weight, your blood pressure, enter information into the computer.  She sat longer with Colleen than most of her DOCTORS to date did.   That was amazing to me at least - the doctor would be armed with information before he even walked into the room.  In Philly, Colleen had to continuously repeat her medical history to the doctor every time she went.

She next saw a nurse practicioner, who did a remarkable job of talking to Colleen about her condition.   Seriously, this young lady knew more about gastrointestinal conditions than some of the "experts" we have seen.    She was thorough, listened to everything Colleen had to say, allowed Colleen to ask questions, didn't brush off any of Colleen's concerns, and even knew of treatments that Colleen had yet to try.   This was no standard nurse coming in to ask the basics; if the appointment ended with her, we probably would have been satisfied - that is how good she was.

After a good 30 minutes with her, she took all of the information she gathered and discussed it with Dr. O'Brien-Clarke.  This was BEFORE the doctor even walked into the room.    This is how a hospital should be run - let the experts walk into the room armed with all of the information in hand.  The doctor should walk in with a general idea of what he is going to do or recommend before he even talks to you.   This way, he isn't wasting time asking you a million questions about your history - he can spend the 30-45 minutes with you discussing your condition, what he recommends,  answer any questions you have, etc.   I can't say enough about how professionally run this operation is.  I would recommend O'Brien-Clarke to anyone with a gastrointestinal/mobility issue - that is how impressed we were with the first visit.  

As for Colleen, there are other treatments she can try and other tests she can have run.  Her next big test will be an endoscopy with an ultrasound component, which she has never had before.   It is an outpatient procedure in Baltimore.  We don't yet have a date for that.  For now, she is going to try a nerve pain drug that is typically used for other conditions but has shown to help some with conditions similar to Colleen - the drug itself is Lyrica, though one potential issue we ran into is that there may have been a mixup between the doctor and the pharmacy, as Colleen actually has a different drug in her possession right now.  It is possible also that we misunderstood which drug he wanted to start Colleen on first, as there are a few she can potentially take.   One class of drugs has similar properties to other drugs Colleen has taken but have shown to have lesser side effects.

Not once did this doctor suggest to Colleen that this is in her head.  Not once did we hear that from anyone today.   The bedside manner of this doctor and his nurse practitioner was just amazing - Colleen, who is an anxious person, was so at ease that I didn't even need to mutter a word.  She had it all under control.  And the credit for that goes to her (of course) but also the the way the staff treated her and made her feel as if she was a person, not just a name on a medical chart.

He is also a progressive doctor who isn't afraid of alternate treatments - they even have a person who does acupuncture on site, and have a specific protocol they are willing to share with anyone local to us to help treat Colleen.  Not being afraid to think outside the box is a welcome sight.

So, do we have answers for you today?  No.   But we weren't expecting a miracle - we were expecting a fresh start from a new doctor, and that is what we got, plus much more.  You can just tell this doctor doesn't just read from a textbook - he studies this stuff, gets involved in trying to find new treatments, etc.  There is even ongoing medical trials going on for some patients that he made us aware of, but we aren't yet going down that path.  All of this is stuff any "expert" should know, yet this is the first doctor who has brought it up to us.

I wish he was closer - not because I hate the drive, but because if he was closer, we likely would have seen him much sooner in our journey.

Oh, and as I told Colleen on the drive home, today marked a record for me:  longest distance I have ever personally driven.   I am also happy to report that Colleen drove the entire way home, which can be a challenge for anyone who is very sick.

As one more aside, I created an iPod playlist for the entire round trip.   I mixed up a bunch of my favorites (ok, mostly Alanis and Christina Perri) with a bunch of songs I thought Colleen liked.  As it turned out, I am not sure which Madonna songs (Colleen's favorite artist of all-time) are her favorites.  I think I picked two out of a dozen or so that she said she would have chosen if she made the playlist.  Just remember - no matter how much you think you know about your spouse, there is always more to learn.

Don't Be Afraid to Express Your Feelings

I am sure many people who read this blog have Facebook accounts, Twitter accounts, etc.  You read posts from your friends, acquaintances, and whatever the other 99% of your Friends list represents, and wonder why so many seem to complain about such trivial things sometimes.   Of course, deep down, you realize that if you were healthy, the fact that it is raining today, or there is too much snow on the ground, or that your PopTart didn't have as much frosting as you like would probably be the stuff you would be complaining about as well.  We all complain based on our current situation in life.  If one is healthy and able to get through their day without any pain, suddenly other things going on around them become a source of complaint, or irritation.  

Even as a spouse of someone who is very sick, I can sometimes fall into this trap as well.  As a big-time sports fan, I will complain about my teams from time to time.  As a computer/tech guy, I will complain if my PC isn't performing well or my iPad is giving me trouble.   I have tried through the past three years to temper these admittedly trivial things, but even I slip up from time to time - it is human nature.

But here is the thing:   People who are chronically ill, such as my wife, tend to be the people who complain the LEAST about their condition.   I am not a psychiatrist or anything like that, but there must be a reason for that, whether it be not wanting to show the world just how sick you really are, or not wanting your illness to be the focus of everyone's attention.  Perhaps you don't want people who are having a good conversation on Facebook to suddenly stop what they are doing to read about your day of dread.  Or perhaps the bottom line is that you feel Facebook or social media is not the proper forum for such talk; that personal relationships, support groups, etc. are better places to vent and get out your frustrations.

Even in private, my wife doesn't really "complain" about her condition in a traditional sense - not in the same way one may complain about a baseball manager making a wrong decision, at least.   She vents, she cries - she does everything one with a terrible illness does.    But a true complaint? Other than about her myriad of bad doctor experiences, not really.   She is more focused on her pain, and her next steps, and all of the stuff people with bad illnesses think about not only daily, but often by the minute.

As someone who is sick, you need to put yourself first...and express exactly how it is your feeling when you are having a rough time.  I know it is difficult for Colleen to actually tell me when she is having a relatively good day - the whole jinx thing - but those days are unfortunately not very frequent.   But sometimes she also may hold back when she is having a bad day, which I think is a natural thing as well.   She will use words at times like "burden", which I tell her she most definitely is not.    As a loved one, you should be able to pick up on signals that your loved one is having a rougher day than even a typical rough day.  It can often be seen in their facial expressions, their overall look, their energy level, etc.  Sometimes, the clues can be subtle - but they are there.  Watching a TV show you both enjoy, and your spouse not being "into it" as much as usual.   It shouldn't always been a one way street - obviously, you can't always be a mind reader, and only your loved one knows how he/she really feels at any given moment.  However, you should try to always ask how they are feeling - first thing in the morning, a few times during the day, before bedtime, etc. and let them vent and get it all out if they need to.   Venting doesn't necessarily make a sick person feel physically better - but the MENTAL aspect of living with a bad disease can be just as damaging as the physical at times - they feed off of each other, and venting/crying/lashing out is something that helps with that aspect.  It gives them a release.  

When someone in your household is chronically ill, the very least one can do is lend them an ear - it isn't difficult to do, and the person who needs the ear is in much worse shape than you are.   Let them vent - say some encouraging words, if you feel it to be necessary - but sometimes the vent itself is what releases the most pressure from a true mental standpoint.

For those who are sick, you are not a burden - you most certainly are not worthless, or a waste of anybody's time.  You have just as much right to live a life as everyone else does.   If someone makes you feel like a burden or a waste of their time, move on - find people who actually care.   They do exist - to be exact, you may even be surprised just how many of them do exist.   You were given a condition - in many cases, an evil condition that may or may not be curable.   The best you can do is keep trying - persevering - trying to keep your head up high even when you are feeling your absolute worst.  And never be afraid to tell anyone how you feel or what is going on inside of your body.   It is very important - necessary -that you let that stuff be known.   DON'T BE AFRAID TO BE SELFISH from time to time - in many cases, it is your life that is at stake - and no stakes are higher than that.  People who love you and support you will understand when you have those times where you simply MUST put yourself first and foremost without worrying about what everyone else needs.  

Colleen's journey has been a long one, obviously - and is obviously still continuing.   I have said in the past that if any doctor, or non-doctor for that matter - were to ever give Colleen something that would ease her pain and make her feel better again, I would write up several blog entries on their greatness.  Unfortunately, we have yet to find that magic person.  She is currently in the care of a chiropractor, with three treatments thus far.   It may be a bit too early for us to draw any conclusions from those visits, but when one has been so sick for so long, patience does tend to run a bit thin with anything that doesn't show much, if any, initial relief.   I will update on that further as she goes through more treatments.



  

An Inspiration...

"I still keep my hope and stuff.  I know I can beat this.  Just gotta have a lot of faith."  More on that quote a little later.

Earlier today, Colleen made a request for a blog entry.   This actually marked the first time she has ever asked me to write about any specific topic.    She didn't want this particular post to be about doctors or treatments or any of the more technical aspects of her disease that I have been typing about in my most recent posts.  To be exact, she asked me one simple question to write about:   "Why do bad things happen to good people?"

Obviously, I don't have an answer to that question.  Nobody really does.    I don't pretend to be a religious person, or someone who looks to the heavens for guidance when it comes to Colleen - I can't find answers in that spectrum, and there is obviously no test that can be run that shows us who is good and who isn't, and why bad things happen all the time to good people (and good things happen to bad people).

The first person that came to mind when she asked that question was Casey Anthony, the Florida mom who killed her daughter, found enough sleazy lawyers to defend her, and found a way to be found Not Guilty.  A bad person who, as long as she keeps her nose clean, will forever be able to walk this earth without any fear of being prosecuted again for killing her own kid.   Isn't this the type of person who should be struck with something that will keep her bedridden?    I wouldn't typically wish that fate on anyone - but if there is going to be disease in this world, may as well give it to the people who, quite frankly, aren't very good people.

It also brought a few other thoughts to my head.  Colleen's cousin and his wife dealt with a tragic death in 2007, when their 10-year old daughter died of cancer.    The brave little girl did nothing to deserve such a fate obviously, her parents didn't do anything to deserve such torture, etc.  The inspiration of her story is actually found in a series of online videos she did while she was fighting for her life (Here is one such segment of Tara's video diary - searching for her on YouTube may find more).       A kid with that much hope and faith that things will get better is inspiring - her videos are touching, hopeful, sad - a bunch of emotions all mixed in one big giant ball, and in the end, you realize her legacy is that of someone who can give hope to any of thousands of children who deal with similar conditions every single day.  I think Colleen would love to be one of those people some day - someone who can look someone square in the eye, tell them about how she fought through a most horrible ordeal, and came out of it feeling healthy, strong, and doing everything she has ever dreamed of doing.

There are more examples of bad things happening to good people.   Colleen's dad died many years ago (years before I even met Colleen) unexpectedly.   My family lost my father in 2013, a year or so after being diagnosed with lung cancer.   We lost a cousin, not much younger than I, not long after that unexpectedly.  I have a friend who deals with an illness that I believe is still unexplained, and she has a friend who is fighting cancer as well.   Another person I know had symptoms pop up that lead to the eventual diagnosis of Parkinson's Disease.  All of these people are good people - didn't deserve their fate, just like Colleen doesn't deserve hers - just like many people out there who are dealing with these crippling diseases do not deserve them.

But why does it happen?  Why can't we be picky and choosy?  If 5% of the population is destined to have Disease X, can we not just give it to the child killers, the serial killers, the animal abusers, etc?  Why do people who have so much to give and so much to live for have to end up often in bed, feeling so much pain and despair, with very little they can do to fix themselves?

Unfortunately, there is no answer to that.   "Everything happens for a reason" sometimes rings hollow, as there isn't always a reason for everything we go through in life - extreme illness definitely qualifies as something that doesn't happen with a higher purpose in mind.   If it did, we would all be hoping for it so that we can all find our higher purpose in life.     Think about when you get the flu.  Think about someone you may know who at one time was extremely sick and feeling hopeless, only to one day come out of it feeling healthy again.   Are they ever thankful for being sick, or are they thankful that they are once again healthy?  I would venture to guess the latter.

Sometimes, you may have to think like Tara - her final outcome wasn't what she or anyone hoped for - but the message is still loud and clear.  You need to have hope and faith that some day, everything will be better again.  It is not easy to reach deep down and find that when you are feeling sick, when you are having your worst days.   It is easy for a healthy person, such as myself, to say be hopeful, have faith, keep your chin held high.   But all of that has to come from within - the strength of a Tara to look cancer in the eye and say "Not me" is an inspiration.    Getting to that point in your journey is not easy, and may always seem impossible.   Colleen has had many moments in her horrible journey where she had those feelings - the feelings of being hopeful and crossing her fingers, only to run into another brick wall, or another person who makes claims they cannot really back up, or doctors who simply are completely clueless and uncaring.    Her strength, which she doesn't always think she has, inspires me - if she, as someone who is horribly sick and often bedridden can do THAT, then I can certainly do THIS.    Her constant efforts to get better are heartbreaking to watch when the ultimate outcome just doesn't come for her.     She deserves better, and everyone reading this deserves better.   It isn't fair, in any way, shape, or form - and it is my opinion that if you are sick, or have dealt with a sudden death in your family, etc. that it is perfectly acceptable to say "THIS ISN'T FAIR" without someone retorting with the dumb "Life isn't fair" crap.   There are scenarios where "Life isn't fair" obviously rings true - being chronically ill and not knowing when you are going to be able to eat again is not one of those times.

The person Colleen is has never changed.  If you are a chronically ill person reading this, always try to remember that:  The essence of the person you are has never changed - if you woke up tomorrow feeling healthy and strong, you would probably run out the front door, naked and screaming to the world that you are healthy again (Colleen once commented that she would have a giant party as soon as she is healthy again.  OK, she may have said "IF she is healthy again" - I, as her husband, resist using the "I" word)

So why do bad things happen to good people, while bad people are able to roam the earth free and easy without even the slightest bit of indigestion?   The answer is not as clear as the day, nor is it like a math equation that can be solved in a few steps.   The illness is not punishing you for a past injustice, nor does it make you a different person inside than you were before.    They are two separate entities - the good person you are and the bad illness you have been given.  They intertwine in how you feel daily, no doubt about it.  But you aren't bad just because you are sick - and Person X isn't good just because they are healthy. Unfortunately for all of us, sickness has random elements to it - which is why people who are active, eat healthy, etc. can still find themselves in a hospital bed, while someone who can't get through a day without eating two doughnuts and smoking a pack of cigarettes lives to 90 without any medical conditions.  In many ways, like the illness you are suffering from, it is a great mystery without any detective capable of solving it.

As for the quote in the beginning of this entry, as you may have guessed - it comes from Tara.   In the end, knowing you can beat it and having the faith you can is very powerful.  It may not always be enough when it comes to our bodies, but having the hope and the faith and the ability to stay strong is what ultimately will carry you to the finish line, no matter what ails you today, tomorrow, or next week.   Don't let anyone bring you down or make you feel smaller than you already feel - you are worth the air that you breathe, and one day the sun will hopefully shine brightly once again on you.

The Chicken or the Egg?

It probably doesn't take a rocket scientist to figure out that the past three years have been complete torture for Colleen - especially on a physical level, but also on an emotional level.     If you have a chronic illness, you have probably dealt with the emotional side of the spectrum.    Perhaps at one time, you were able to do whatever you wanted without the fear of passing out, throwing up, or becoming so overcome with pain that you end up in bed in a fetal position.     When an illness hits you as hard as this one has hit Colleen, you will (not may - WILL!) forget exactly what it is like to be healthy.   Sickness becomes your new normal, and trying to get out of that phase is extremely difficult - some would say impossible.    I dealt with it when I went through my own illness.  It became a situation where I knew I was going to nearly pass out when I walked through a store.   I knew I wouldn't be able to walk my dogs more than a block without feeling dizzy.   The biggest one is that I most definitely knew I wouldn't be able to drive to see family and friends without experiencing at least one incident where I felt as if I was passing out at the wheel (which did happen once).  Once you start to accept that as part of your life, you don't even really think about how it was before you got sick - it feels like a lifetime ago.  In some ways it feels like you were never healthy in the first place.

Colleen went to see her GI doctor today.  A local woman probably no older (and perhaps even younger) than Colleen who has the ability to be compassionate and relatable while also being direct and honest.   If you have ever gone to a doctor who runs a million tests that "proves" to them you have nothing wrong with you and comes to the conclusion that everything is in your brain, that is not a doctor worth keeping.  The difference with this doctor is that she doesn't just say "It is in your head - now go away".  Rather, she explains how our systems work within our body - and how emotions, stress, and anxiety can cause our systems to go haywire.  This does not mean what you experience is all in your head - what it does mean is that your brain is working on so much overdrive that it makes your real symptoms even more unmanageable.

So, what does all of this have to do with the chicken and the egg?  As she explained today, there isn't an answer to the simple question:  Is my mind causing my symptoms (or making them worse) OR is my illness causing my mind to explode with fear, anxiety, and panic attacks?    When I read that question, I come to my own conclusions with my own answer.  Simply put, it doesn't really matter which comes first - because the bottom line is that you end up with a brain that is working at a speed of a million miles per hour while your body is in constant pain that you simply cannot get away from.    If you have constant stomach pain, where does the feeling of "pain" come from?  Your brain, of course.  That is how we feel pain - when we bang our knee against a wooden table, we typically do not feel the sensation of pain in that moment - it takes a millisecond or two for your brain to process what just happened and give you the feeling of intense pain. 

The GI doctor also explained what Colleen is going through this way:   Our human body is constantly doing things that we cannot feel.   The typical healthy person cannot feel it as food is going through their systems.  We can't feel the blood flowing through our bodies - we don't sit down and feel our heart beating, etc.  But for people with a condition like Colleen has, these sensations are actually FELT and magnified to an extreme.  In my mind, it is kind of like going through surgery without being knocked out first - if are having major knee surgery but the doctor decides not to put you to sleep first, you are going to feel everything that is going on (thinking about that I am sure makes you feel scared).   That is how someone with Colleen's condition can actually feel - her stomach/digestive system/body/brain/whatever is not hiding all of the stuff that is going on inside of her.   Hence, she gets sensations of "sloshy" liquids in her stomach, or intense pains throughout her body.  It is a vicious, unrelenting cycle that is very hard to get out of.    Simply shutting off your brain doesn't fix it, because you have a REAL PHYSICAL CONDITION (again, don't let ANY DOCTOR convince you otherwise!).  Simply shutting off whatever the disease is you have is also not likely going to make you feel 100% - because your brain has not yet been shut off as well.   So, you become "cured", but your brain simply won't accept it.   As I stated many times, I have been there, done that.  After my illness pretty much left my body, I still went months where I had trouble driving.  There was nothing really wrong with me at that point, but the incident where I passed out at the wheel when I was legitimately sick was still there - and  my brain would not let go.  I can't even really tell you when my brain decided to let it go and let me drive normally again.   

As for today's visit, for now we have to deal with a new diagnosis:   Since everything has been essentially ruled out, Colleen may have a bad form of IBS, which is something you can look up online.   The first thing you may thing when you see that is "IBS!  I've heard of that - thank goodness it is *only* that!"  Well, yes and no - yes, thank goodness, because IBS is not typically a disease that kills you.   By the same token, it also has no known cure - only treatments, a few of which Colleen is starting today to see if it helps her symptoms at all.  As with everything else, she isn't going to feel better after one pill - we just have to hope and pray that the treatment over the course of several weeks gives her relief and makes her feel better and herself again.    For those who are wondering "Do I have IBS?  How did the doctor come to that conclusion?", the answer is simply this:   IBS is an exclusion diagnosis.  A good doctor (which this woman is) will NOT diagnose a patient with IBS unless every other reasonable condition has been ruled out through testing, observation, therapies, etc.

Does this all mean that Colleen definitely has IBS?  Of course not....if you have ever heard the term "You can't prove the negative", here is the time to apply that.   IBS is something that cannot be proven - it can only be given as a cause when everything else comes back and says "No".  Since you cannot prove it, you also cannot ever tell anyone that they definitely have it.  

In any case, that is where we are at the moment - I haven't mentioned anything in this blog about her BodyScan experience, but that for now will be left for another day.    We just want (NEED!) Colleen to be healthy again - whatever path we choose that gets her where she needs to be is the one we will applaud in the end.   I will also write up a separate blog about her GOOD GI doctor soon. 

Having An Open Minded Approach....

Yesterday, Colleen went in for testing that was, shall we say, a bit unique.    If you have ever heard of BodyScan 2010, you are probably in the minority.  It isn't all that well-known, and isn't really used in many places.  (To be exact, as we found out yesterday, people from other countries will fly into America to get the test).  You can read about the specifics online, but it is run much differently than your standard blood test (to be exact, blood isn't even needed).  You are essentially hooked up to a computer and told to put your hand on a pad.   When you do that, the computer runs 10,000 tests on your body, trying to determine what may be ailing you.  (Say WHAT?   A hand on a pad and a computer can tell me what is wrong with me?)  Well,  maybe.   Let us back track a little bit.

When Colleen walked into the office, she had to fill out of a form indicating what has been bothering her for so many years - obviously, her number one symptom was going to be her stomach.    She emphasized that without really getting into her own theories on what has been ailing her.  For a while now, Colleen has been wondering about her hormones and her thyroid on top of her stomach.  Something was malfunctioning somewhere, but every test she had came back normal.  She would often bring up to doctors that normal blood ranges DO NOT MEAN A DARN THING sometimes, but they wouldn't listen, for the most part.  "Your numbers are fine; that's all I know"    Frustrating, yes.  But as desperate as we may be to get Colleen healthy, we weren't going to break into any pharmacies overnight to steal thyroid prescriptions.  

I won't get into all of the details, but the doctor who saw Colleen last night, without knowing much of anything about Colleen's own suspicions, almost instantly identified the thyroid as a problem.  Not only that, he identified the hypothalamus as perhaps Colleen's biggest problem.  The hypothalamus?  What the heck is that?  Well, I will let you read about that online - but essentially, it controls many functions within your body, including (drumroll.....) your hormones!  (Ding!  Ding!  Another thing that Colleen has suspected for months comes up as a problem on this test!)     The other two issues identified were fatigue and yes (ding ding!) her stomach.    During the initial parts of the testing, the doctor even described to Colleen something about shooting pains coming from her chest.  Once again, Colleen didn't mention this at all, and she has dealt with shooting pains since the day she was diagnosed with the shingles years ago.    If you are sitting there in disbelief, I don't blame you - if someone came to me and told me they had this experience, I likely would have a tough time believing it myself.

So, what does all of this mean?  For now, absolutely nothing.   All we have is an open mind.   We were given some supplements and a few homeopathic therapies that Colleen will be taking for the next several weeks in an effort to try to get all of these issues under control.    The bottom line is that I cannot recommend or not recommend anything without seeing how Colleen feels when everything is completed.  This can take months - perhaps as far out as Christmas or so - to see if it actually worked or not.   All we have right now is a computer that identified things that Colleen suspected, and supplements/therapies targeted to try to fix those things.   Will she wake up tomorrow as the healthy woman she was years ago?  Of course not.   But I will say this:  If, after she is done with all of these appointments, she is feeling healthy and strong again, that is all the proof I will ever need that the system works, and works very well.     Right now, I am feeling hopeful.  And hopefully my future blog posts on this subject will be filled with good news.  Colleen can certainly use plenty of it.

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.......