I can't believe it has been a full year since I last made a blog post about Colleen's health.
Usually at this time of the year, I am giving my "holiday speech" - that speech where I will beg a loved one to not force the holidays on anyone who is sick. The holidays are filled with a lot of stress, but more importantly, they can also be filled with a lot of FOOD. And when your loved one has a chronic stomach condition, well - food is public enemy number one. Combining food and the stress that can go along with the holidays is a double-edged sword. You are now trying to force something on someone who is both physically and mentally unable to do what you are forcing. Obviously, I get your plight: You want them with you as you make the rounds to friends and family and all of the joy that can come with that. But be aware that by doing that, you are potentially making their condition worse.
I have found through the years that patience will be key. I have never always been the most patient of human beings (as my close friends and family can attest to!) I essentially went from one extreme to another - perhaps being a bit too patient with people nowadays. But when it comes to your sick loved one, PATIENCE is probably the number one thing you should learn to practice. It can be frustrating as several doctors throw several things at your loved one, only to see nothing work. They will see good doctors, they will see bad doctors. They will be recommended people who are alternative (I am not against alternative medicine in the least bit - but BE CAREFUL. There are more snake oil salesmen out there than you can ever imagine. If something seems to be too good to be true or pure illusion, guess what? It probably is. You wouldn't rely on Penn & Teller to cure your disease with an illusion, so don't expect one of these doctors to be able to do it. Even alternative medicine should make sense.)
Now for a little plot twist in this post: Colleen is actually feeling better as I type this. Gone are the 12-13 hour sleep days - replaced with a schedule that is much less sleep dependent. Gone are the days of being so sick that even when she was awake, she couldn't really function. She now does her exercise routines. (intense exercise routines at that!) She now can eat more foods - no more reliance on Cream of Rice, Minute Rice, and whatever else she might be able to hold down on a good day. This is not to say that she can necessarily eat anything and feel great - but this IS to say that she has been able to eat different foods and not feel awful within an hour of doing so.
Every holiday season, the Christmas Light Tour is one of our favorite things to do - we drive around the state of NJ, just looking at Christmas lights and decorations that people put up (Note: If you use those new projector lights, Colleen will give you a very big thumbs DOWN. If you use bright lights that don't blink and give you a headache, you will get a big KUDOS! And if you own a house that is is bigger than Sicily but don't decorate it? Let us just say that I am glad we don't carry eggs in our car). Anyway, this year we have done more tours than we have in recent years - there were days in the past where she may have wanted to go, but just couldn't. This year? Every night she has wanted to go, she HAS. The word "CAN'T" is quickly being replaced. It isn't being replaced with "CAN" - rather, it is being replaced with the word "WILL".
Does all of this mean Colleen is cured? Of course not. Cured is a very strong word - and if you have ever been hit with a chronic illness, you will find out that the word CURED is probably not one you will use to describe yourself often. I have never described myself that way - after all, if nobody ever could 100% diagnose what was wrong with me, how can I be cured of it? Same type of thing for Colleen - nobody can say "cured". What they can say is "feeling much better than I did last week".
How did Colleen start feeling better? Tricky question. Right now, she is taking a prescription medication (Mirtazapine), a Vagus Nerve Support supplement (Parasym Plus) and essential oils all in combination. By the way, this particular blog is not "for profit". By clicking on products above, I am not getting any kickbacks. I am not even promoting them for use - that is a decision that can be made between you and your physician. I am not a doctor and I surely cannot diagnose you. This is all written from our experiences. I am sure the increased exercise has also helped, but increasing her exercise was a result of starting to feel better. It is possible that the increased exercise has helped her maintain her improved health, of course.
All of the above isn't to say that Colleen feels 100% normal 100% of the time. It is all about taking one day at a time and hoping that her renewed energy and health continue into 2017 and beyond. If you have followed her journey, and have a journey of your own, you know how uplifting that can feel - seeing something that looks like a light at the end of a very, very long tunnel. I hope for many of you that 2017 can bring with it some normalcy in your health and happiness. If someone as sick as Colleen was can start to break out of it, trust me: Anybody who suffers a similar condition can as well.
I will be posting another update "post-holiday".
Monday, December 19, 2016
Monday, December 7, 2015
Does it Happen for a Reason?
Last Friday, Colleen and I made another trip down to Baltimore for her regular appointment with her specialist. (The more you drive down to Baltimore, the faster it appears to go. The interesting thing about travelling to Maryland is that the hardest part going there and coming back is actually New Jersey. Delaware is so small that it barely registers on Google Maps, and you really don't drive too far into Maryland. When one comes home from Baltimore, you feel this sense of relief when you see the "Welcome to NJ sign". Then you realize that you are still nowhere close to home) Anyway, the trip was again worthwhile, as Colleen is again attempting a few things to try to get herself some relief from her condition. She has doubled her dosage of Mirtazapine, and will also be at least temporarily trying Xifaxan, which has recently been given approval by the FDA for IBS-like disorders. As I have said many times, we have no idea exactly what Colleen has - so a lot of this stuff is trial-and-error. While the marijuana pill didn't do much to help her, the Mirtazapine has helped with the mental side of her disease, which is definitely a good thing. The drug has released some of her sense of hopelessness and given her more energy to get back into some exercise routines. This shouldn't be considered a cure, because the problem is still there. But when you are chronically ill, the mental side needs to be treated just as aggressively as the physical side. To date, other than some extra tiredness, this particular drug has not shown the side effects that she experienced with other drugs indicated to help treat that side of the equation.
As always, Dr. Clarke (and his assistant) were very responsive to Colleen's needs and questions. If you can find a doctor with better bedside manner, I would love to meet him. Because Dr. Clarke is a a saint - the perfect combination of knowing what he is talking while keeping you at ease, and making you feel comfortable asking questions.
This whole experience over the past several years brings me back to an old adage you all have probably heard one million or so times in your lifetime. Repeat after me: "Everything. Happens. For. A. Reason". No matter what happens in your life, you will probably have at least one person tell you that - and you yourself have probably mentioned it a time or two as well. You spilled gravy on your best shirt? No problem, because everything happens for a reason. You have a peanut allergy? No worries - when you break out and can barely breathe, just remember that it is happening for a reason.
I sometimes would even think that when I got sick many years ago, that it happened for a reason - so I would understand better when my wife was to get sick only a few months after I was "cured". It is a good way to rationalize things, of course. A good way to make an excuse for why I got sick It had nothing to do with something going crazy inside my body - it was because it would make me understand when a loved one also got sick. Sure, it may have taught me perspective - and most definitely put me in a mode where any time I hear of an illness from friends, family, friends of friends, coworkers, etc...I can instantly find the compassion, the sadness, and everything else. But here is the thing about that: Would I not feel the same if I never got sick? If Colleen never got sick? Of course not. I may better UNDERSTAND what someone is going through on SOME level, but the feeling of empathy wouldn't be much different.
There are a few ways to look at this old adage. One way is by simply stating the obvious: Of course everything happens for SOME reason. If your computer breaks down, something caused it to happen. If your shower no longer has running water, there is likely a reason why. But it is not likely some spooky, unseen thing that causes it - a gremlin didn't come into your house and shut off your water to prevent a flood. He certainly didn't jump into your computer because he was sensing a fire hazard. Something simply FELL APART and needs to be fixed. The same is true when you become ill, whether it be the rather mundane common cold or something much more serious than that. A ghost certainly didn't cause it, and I doubt those with pitchforks have any real reason to attack you with something while not giving it to someone else. (Isn't that something? Not only does one have to deal with being sick - they have to deal with the possibility that an unknown spirit hates them so much that they made them sick!)
In the end, when you become chronically ill, or whatever malady you may face in this crazy world, just remember that what happened to you is not because you are hated - not because the world is against you - and certainly not because of anything you did wrong. It didn't happen for a "reason" that can likely be rationalized in any real way. In the case of Colleen, the medical reason could have been a "simple" bout of food poisoning gone terribly wrong, as her first and original illness felt like a stomach flu - a stomach flu that went into remission for three months before deciding to come back permanently. It may be connected to a bout of the shingles she experienced. It could be a wide variety of things - that may never be known.
But I can almost guarantee anything that it wasn't some part of a grand plan. You don't get sick for five years due to some great person's weird, diabolical plan to take away a large percentage of your life to make you come out of it better in some way. I can almost guarantee you that anyone who is sick would rather just live their lives than be taught a strange lesson through human torture.
No matter what your illness may be, or what the prognosis is, or the feeling of hopelessness you may or may not have - just remember that it doesn't speak to who you are as a person - doesn't speak to your soul - your illness doesn't define your past, your present, your future, or your legacy. You define that yourself - you define that through your heart, your soul, your brain, and how you treat others.
And when someone perfectly healthy tells you it is all happening for a reason? Just smile, and actually show compassion - for they seriously have no idea what it is you are going through. And hopefully they never will.
As always, Dr. Clarke (and his assistant) were very responsive to Colleen's needs and questions. If you can find a doctor with better bedside manner, I would love to meet him. Because Dr. Clarke is a a saint - the perfect combination of knowing what he is talking while keeping you at ease, and making you feel comfortable asking questions.
This whole experience over the past several years brings me back to an old adage you all have probably heard one million or so times in your lifetime. Repeat after me: "Everything. Happens. For. A. Reason". No matter what happens in your life, you will probably have at least one person tell you that - and you yourself have probably mentioned it a time or two as well. You spilled gravy on your best shirt? No problem, because everything happens for a reason. You have a peanut allergy? No worries - when you break out and can barely breathe, just remember that it is happening for a reason.
I sometimes would even think that when I got sick many years ago, that it happened for a reason - so I would understand better when my wife was to get sick only a few months after I was "cured". It is a good way to rationalize things, of course. A good way to make an excuse for why I got sick It had nothing to do with something going crazy inside my body - it was because it would make me understand when a loved one also got sick. Sure, it may have taught me perspective - and most definitely put me in a mode where any time I hear of an illness from friends, family, friends of friends, coworkers, etc...I can instantly find the compassion, the sadness, and everything else. But here is the thing about that: Would I not feel the same if I never got sick? If Colleen never got sick? Of course not. I may better UNDERSTAND what someone is going through on SOME level, but the feeling of empathy wouldn't be much different.
There are a few ways to look at this old adage. One way is by simply stating the obvious: Of course everything happens for SOME reason. If your computer breaks down, something caused it to happen. If your shower no longer has running water, there is likely a reason why. But it is not likely some spooky, unseen thing that causes it - a gremlin didn't come into your house and shut off your water to prevent a flood. He certainly didn't jump into your computer because he was sensing a fire hazard. Something simply FELL APART and needs to be fixed. The same is true when you become ill, whether it be the rather mundane common cold or something much more serious than that. A ghost certainly didn't cause it, and I doubt those with pitchforks have any real reason to attack you with something while not giving it to someone else. (Isn't that something? Not only does one have to deal with being sick - they have to deal with the possibility that an unknown spirit hates them so much that they made them sick!)
In the end, when you become chronically ill, or whatever malady you may face in this crazy world, just remember that what happened to you is not because you are hated - not because the world is against you - and certainly not because of anything you did wrong. It didn't happen for a "reason" that can likely be rationalized in any real way. In the case of Colleen, the medical reason could have been a "simple" bout of food poisoning gone terribly wrong, as her first and original illness felt like a stomach flu - a stomach flu that went into remission for three months before deciding to come back permanently. It may be connected to a bout of the shingles she experienced. It could be a wide variety of things - that may never be known.
But I can almost guarantee anything that it wasn't some part of a grand plan. You don't get sick for five years due to some great person's weird, diabolical plan to take away a large percentage of your life to make you come out of it better in some way. I can almost guarantee you that anyone who is sick would rather just live their lives than be taught a strange lesson through human torture.
No matter what your illness may be, or what the prognosis is, or the feeling of hopelessness you may or may not have - just remember that it doesn't speak to who you are as a person - doesn't speak to your soul - your illness doesn't define your past, your present, your future, or your legacy. You define that yourself - you define that through your heart, your soul, your brain, and how you treat others.
And when someone perfectly healthy tells you it is all happening for a reason? Just smile, and actually show compassion - for they seriously have no idea what it is you are going through. And hopefully they never will.
Tuesday, September 22, 2015
Two Trips to Baltimore, With a Raccoon in the Middle
Recently, Colleen was placed into a clinical study (this has nothing to do with the raccoon), where she needed, over the course of two weeks, to take a few visits to Baltimore to undergo a study which involves taking a lot of blood, undergoing yet another gastric emptying study, and an EGG (electrogastrography) test (actually, two of these tests - one that I guess you would call a "normal" test, and one that they refer to as a water loading test)
My original plan for this entry was to do it in real time - for one, I do it this way because I don't want to forget anything. For another, it does help pass the time. Suffice to say, things moved at such a quick pace that it was hard to keep up with everything. Now, "going at a quick pace" doesn't necessarily mean that these trips were quick. Quite the contrary, actually (especially trip one). Anyway, if you saw a very much incomplete blog entry posted a few weeks ago, that is why it was never finished..that, and the raccoon, which we will get to later.
For the first trip, we left the house around 4:30 in the morning, and made decent time getting to Baltimore. Timing is very important when planning a trip to Baltimore - if you live in the Northeast and decide to make an appointment down there, I highly suggest going in as early as possible - it may be a long, lonely ride - but at least you won't hit crazy commuter traffic. We have to travel some roads that are typically quite busy (NJ Turnpike, 95, etc.), so getting out of here as early as possible usually helps us make great time.
The first part of Colleen's test that day was another gastric emptying study. She already had undergone a few of those through the years - to be exact, it was an outdated version of this test that originally lead to a Gastroparesis diagnosis. The second time she had this test, it was a more updated version of the test that resulted in an emptying time that was only slightly off. The third test? Let us just get this out of the way: Our suspicions that Colleen is not dealing with Gastroparesis were pretty much confirmed. This was supposed to be a 4-hour test, with the typical images taken at various intervals to see how much of an egg sandwich has been digested. Colleen was told she could leave only a few hours into the test, as the meal was passing through her system at a normal level. The bottom line here is that do not let one test or one doctor tell you what you have. Getting second opinions. Third opinions. Because it takes more than one test - especially an outdated one - to prove you have anything.
You may be thinking that was the end of the day. You couldn't be more wrong. We had to take a second drive - this one to the building where Colleen goes to see her specialist - for more testing. It probably wasn't much after 12 pm when we arrived for this part of the test. The researcher who was conducting this testing essentially explained to us, as we were walking to the area Colleen would be tested in, that these tests were going to take a long time. I don't know exactly how close Colleen was to leaving at that point, but I am glad she waited it out - this was not going to be easy. Remember this important thing when you sign up for a study like this: You are essentially a guinea pig (and when they take this much blood, a pin cushion). These tests aren't necessarily diagnostic in nature - no doctor is going to come in at the end of the day and discuss the results with you. That said, the results are real, and they should be seen by your doctor. There is that delicate balance between what is research and what is actual patient care. If they take all of this blood work and notice a major problem, they aren't going to toss it aside - by the same nature, you do have to realize that you are helping them do clinical research and there are certain protocols that need to be followed.
I don't remember the nature of all of the testing Colleen had done on that first trip - the gastric emptying (normal), the blood work, a "smart pill" test where she had to swallow a pill while pictures were taken as it traveled through her system (this required her to eat a "Smart Bar", which is essentially a $20 granola bar that Colleen found to be quite disgusting. I personally looked at the ingredients in this bar, and my goodness. You are giving this thing to a person with digestive issues, and it actually contains partially hydrogenated oil, also known as "trans fat", which is perhaps the most dangerous of all of the fats found in our "food". Just as a general tip: Always read the list of ingredients when purchasing something. A company can put 0.49% of these oils in any food they wish and still claim to be "trans fat free". That is because the FDA allows companies to round down. This is also why spraying a whole bottle of "zero calorie" I Can't Believe It's Not Butter on your potato is actually not calorie-free. But I digress...) There was also another test that required Colleen to do some breathing exercises in addition to the EGG (mentioned above). She was literally there for hours, somehow getting through all of this stuff while not feeling anywhere near her best. We don't know the results of any of these tests (other than the gastric emptying and the first round of bloodwork). Hopefully, we will get at least some answers on what the tests are showing in December.
In total, we left the house around 4:30 in the morning and arrived back home at around 9:15PM that night. We did make one rest stop on the way home, but that only added marginal time. Bottom line: This was a long day. A long day where our three dogs (one of which is very young, and another of which is 11 years old) were home the entire time without anyone to let them outside. Miraculously, there wasn't one mess anywhere to be found - it was as if all they did was sleep for all of those hours. The 11-year old didn't even go outside upon our arrival at home - he was more interested in getting his meal. (note that this is typical behavior)
The next round of testing was scheduled for the following Monday.....but that came to a screeching halt the day after her first round of testing. As I was walking two of our dogs through the neighborhood at 4:00pm, we encountered something one does not want to encounter in broad daylight: A raccoon. Let me get this out there right now: If you see a raccoon in broad daylight, the reasons why are not typically good. The most common reason is that the raccoon is sick and rabid. If it is a younger raccoon, it could be that he or she was abandoned. Either way, they are not out for a friendly stroll of the neighborhood. In trying to run away from the raccoon (who decided that he wished to follow us rather than run off), I tripped and landed very hard on my right shoulder - to the point where I couldn't even move it as I was laying there. I can't tell you to this day what actually became of the raccoon - one of the two dogs started going crazy and was barking uncontrollably, which actually makes me think he went into protection mode and took it upon himself to scare the animal away. Regardless, it disappeared. A couple of neighbors saw all of this action and came to my rescue, walking the dogs the rest of the way home for me. As for me, well - a free (well, not really) trip to the ER, with the customary X-Rays included. They came back negative for any breaks, but I did have a severe sprain, which is still bothering me as I type this a few weeks later. Suffice to say, this episode (in connection with the possibility of stormy weather) had us cancel the Monday appointment - instead, we scheduled it for yesterday.
I still was unable to drive such a long distance, so Colleen had to be the trooper, driving both to Baltimore and back (I usually handle the drive to Baltimore). That is essentially driving six full hours of driving, on what turned out to be about two hours of testing. For this round, they simply took some more blood (not nearly as much!) and did another EGG - this time, the EGG was called a Water Load EGG. Colleen had to drink as much water as she could before feeling full before they ran the test. At intervals during the EGG tests, she has to fill out a form saying how she is feeling. It is a lot of sitting around for her (her least comfortable position), but again, she was able to power through it. We are not sure what this round of bloodwork entailed or what they were looking for. We should be able to find out, though.
This time around, we left much earlier and were home in the middle of the afternoon. To be exact, the hardest part of the driving for Colleen came during the ride home, when we made a stop at a rest stop so I could run in to get something for us to eat and drink. Friday was a hot, brutal day - having to sit in the car while I was getting this stuff was pure torture - when you factor in my injury and the need to make two trips, that made it even more brutal.
We won't really know the results of the EGG testing and the other testing she needed to do right away. We don't know what, if anything, the smart pill is showing. We don't know what the EGG is showing. We don't know what the second round of blood testing was for. And there was another test that required Colleen to do some breathing exercises that I don't even know the overall purpose of.
As for all of that initial bloodwork, a few things did come up - whether they will lead to any kind of true answer is tough to say. Her Vitamin B level is extremely high, but if you read up on that, that isn't clinical - research has shown that Vitamin B tends to be high in people with certain conditions, but it isn't the high Vitamin B that LEADS to those conditions. Her Vitamin D level was insufficient, which she can bring up through supplementation (and one thing we don't have a small supply of in this house is Vitamin D, as I have to take it as well). She also had a low MCH test, which is a measure of hemoglobin. Her test isn't extremely out of range (but I think most of you know my feelings on ranges in lab reports), but a low number here could indicate some sort of anemia. My research showed that people can get a low reading on this if they lack iron, or have some sort of vitamin deficiency (and, as I noted above, Colleen is low on the Vitamin D scale). Anemia can be an interesting little detail, since Colleen is often very tired - but this is no time to put the cart before the horse. It is one low number among a bunch of very normal numbers, it is not severely out of range, and most importantly, we are not doctors able to completely interpret the numbers. The last test that came back abnormal was her TCH. Colleen has always suspected her thyroid is crazy, but she has never been actually treated for it. She has had a few tests that show normal levels, a few that have shown elevated TCH (which is hypo) and even one test with a very low TCH (hyper). Sometimes, you wish a doctor would see that and wonder what is going on. (To be fair, TCH is a very sensitive test - and it isn't completely abnormal for it to show different numbers based on time of day, and other factors. Plus, there are other thyroid function tests that take things even further. As one doctor explained to Colleen, she may need to treat it some day, but she doesn't typically treat someone with her numbers NOW.) It really does depend on the doctor - do you want the doctor that will look at the number and say "Here's your prescription - get out" or the doctor who says "Well, that isn't normal - but it is my procedure to not treat people at those levels"? The second doctor is probably the better overall doctor - but the first one may be the one you want when you are feeling desperate for a solution.
As always, Hopkins came through in terms of hospitality, doing their best to keep Colleen comfortable, and just running a generally great operation overall. There is definitely some feeling that Colleen is a bit of a lab rat with these tests, and technically, that is true. Without the research, the hospital can't made advancements - but the research can be a killer, especially when you aren't feeling well and you have that nearly three-hour drive home in the back of your mind as you are going through it.
Colleen has another appointment with the actual doctor in December - hopefully, she will be able to discuss all of this with him at that time. As part of the study she is doing, she also has to return in six months to take a few of the tests again as a follow-up. Hopefully, none of it requires eating a disgusting, far-from-healthy granola bar. ($20 for a piece of crap bar?!?! Seriously?)
The journey has been long, and we still have more questions than answers. The only answer we have really verified is that this isn't Gastroparesis - at least not a traditional form of Gastroparesis. It is something else - but what that something else is, we just don't have any kind of answers on. Maybe all of this testing will actually reveal something beneficial.
My original plan for this entry was to do it in real time - for one, I do it this way because I don't want to forget anything. For another, it does help pass the time. Suffice to say, things moved at such a quick pace that it was hard to keep up with everything. Now, "going at a quick pace" doesn't necessarily mean that these trips were quick. Quite the contrary, actually (especially trip one). Anyway, if you saw a very much incomplete blog entry posted a few weeks ago, that is why it was never finished..that, and the raccoon, which we will get to later.
For the first trip, we left the house around 4:30 in the morning, and made decent time getting to Baltimore. Timing is very important when planning a trip to Baltimore - if you live in the Northeast and decide to make an appointment down there, I highly suggest going in as early as possible - it may be a long, lonely ride - but at least you won't hit crazy commuter traffic. We have to travel some roads that are typically quite busy (NJ Turnpike, 95, etc.), so getting out of here as early as possible usually helps us make great time.
The first part of Colleen's test that day was another gastric emptying study. She already had undergone a few of those through the years - to be exact, it was an outdated version of this test that originally lead to a Gastroparesis diagnosis. The second time she had this test, it was a more updated version of the test that resulted in an emptying time that was only slightly off. The third test? Let us just get this out of the way: Our suspicions that Colleen is not dealing with Gastroparesis were pretty much confirmed. This was supposed to be a 4-hour test, with the typical images taken at various intervals to see how much of an egg sandwich has been digested. Colleen was told she could leave only a few hours into the test, as the meal was passing through her system at a normal level. The bottom line here is that do not let one test or one doctor tell you what you have. Getting second opinions. Third opinions. Because it takes more than one test - especially an outdated one - to prove you have anything.
You may be thinking that was the end of the day. You couldn't be more wrong. We had to take a second drive - this one to the building where Colleen goes to see her specialist - for more testing. It probably wasn't much after 12 pm when we arrived for this part of the test. The researcher who was conducting this testing essentially explained to us, as we were walking to the area Colleen would be tested in, that these tests were going to take a long time. I don't know exactly how close Colleen was to leaving at that point, but I am glad she waited it out - this was not going to be easy. Remember this important thing when you sign up for a study like this: You are essentially a guinea pig (and when they take this much blood, a pin cushion). These tests aren't necessarily diagnostic in nature - no doctor is going to come in at the end of the day and discuss the results with you. That said, the results are real, and they should be seen by your doctor. There is that delicate balance between what is research and what is actual patient care. If they take all of this blood work and notice a major problem, they aren't going to toss it aside - by the same nature, you do have to realize that you are helping them do clinical research and there are certain protocols that need to be followed.
I don't remember the nature of all of the testing Colleen had done on that first trip - the gastric emptying (normal), the blood work, a "smart pill" test where she had to swallow a pill while pictures were taken as it traveled through her system (this required her to eat a "Smart Bar", which is essentially a $20 granola bar that Colleen found to be quite disgusting. I personally looked at the ingredients in this bar, and my goodness. You are giving this thing to a person with digestive issues, and it actually contains partially hydrogenated oil, also known as "trans fat", which is perhaps the most dangerous of all of the fats found in our "food". Just as a general tip: Always read the list of ingredients when purchasing something. A company can put 0.49% of these oils in any food they wish and still claim to be "trans fat free". That is because the FDA allows companies to round down. This is also why spraying a whole bottle of "zero calorie" I Can't Believe It's Not Butter on your potato is actually not calorie-free. But I digress...) There was also another test that required Colleen to do some breathing exercises in addition to the EGG (mentioned above). She was literally there for hours, somehow getting through all of this stuff while not feeling anywhere near her best. We don't know the results of any of these tests (other than the gastric emptying and the first round of bloodwork). Hopefully, we will get at least some answers on what the tests are showing in December.
In total, we left the house around 4:30 in the morning and arrived back home at around 9:15PM that night. We did make one rest stop on the way home, but that only added marginal time. Bottom line: This was a long day. A long day where our three dogs (one of which is very young, and another of which is 11 years old) were home the entire time without anyone to let them outside. Miraculously, there wasn't one mess anywhere to be found - it was as if all they did was sleep for all of those hours. The 11-year old didn't even go outside upon our arrival at home - he was more interested in getting his meal. (note that this is typical behavior)
The next round of testing was scheduled for the following Monday.....but that came to a screeching halt the day after her first round of testing. As I was walking two of our dogs through the neighborhood at 4:00pm, we encountered something one does not want to encounter in broad daylight: A raccoon. Let me get this out there right now: If you see a raccoon in broad daylight, the reasons why are not typically good. The most common reason is that the raccoon is sick and rabid. If it is a younger raccoon, it could be that he or she was abandoned. Either way, they are not out for a friendly stroll of the neighborhood. In trying to run away from the raccoon (who decided that he wished to follow us rather than run off), I tripped and landed very hard on my right shoulder - to the point where I couldn't even move it as I was laying there. I can't tell you to this day what actually became of the raccoon - one of the two dogs started going crazy and was barking uncontrollably, which actually makes me think he went into protection mode and took it upon himself to scare the animal away. Regardless, it disappeared. A couple of neighbors saw all of this action and came to my rescue, walking the dogs the rest of the way home for me. As for me, well - a free (well, not really) trip to the ER, with the customary X-Rays included. They came back negative for any breaks, but I did have a severe sprain, which is still bothering me as I type this a few weeks later. Suffice to say, this episode (in connection with the possibility of stormy weather) had us cancel the Monday appointment - instead, we scheduled it for yesterday.
I still was unable to drive such a long distance, so Colleen had to be the trooper, driving both to Baltimore and back (I usually handle the drive to Baltimore). That is essentially driving six full hours of driving, on what turned out to be about two hours of testing. For this round, they simply took some more blood (not nearly as much!) and did another EGG - this time, the EGG was called a Water Load EGG. Colleen had to drink as much water as she could before feeling full before they ran the test. At intervals during the EGG tests, she has to fill out a form saying how she is feeling. It is a lot of sitting around for her (her least comfortable position), but again, she was able to power through it. We are not sure what this round of bloodwork entailed or what they were looking for. We should be able to find out, though.
This time around, we left much earlier and were home in the middle of the afternoon. To be exact, the hardest part of the driving for Colleen came during the ride home, when we made a stop at a rest stop so I could run in to get something for us to eat and drink. Friday was a hot, brutal day - having to sit in the car while I was getting this stuff was pure torture - when you factor in my injury and the need to make two trips, that made it even more brutal.
We won't really know the results of the EGG testing and the other testing she needed to do right away. We don't know what, if anything, the smart pill is showing. We don't know what the EGG is showing. We don't know what the second round of blood testing was for. And there was another test that required Colleen to do some breathing exercises that I don't even know the overall purpose of.
As for all of that initial bloodwork, a few things did come up - whether they will lead to any kind of true answer is tough to say. Her Vitamin B level is extremely high, but if you read up on that, that isn't clinical - research has shown that Vitamin B tends to be high in people with certain conditions, but it isn't the high Vitamin B that LEADS to those conditions. Her Vitamin D level was insufficient, which she can bring up through supplementation (and one thing we don't have a small supply of in this house is Vitamin D, as I have to take it as well). She also had a low MCH test, which is a measure of hemoglobin. Her test isn't extremely out of range (but I think most of you know my feelings on ranges in lab reports), but a low number here could indicate some sort of anemia. My research showed that people can get a low reading on this if they lack iron, or have some sort of vitamin deficiency (and, as I noted above, Colleen is low on the Vitamin D scale). Anemia can be an interesting little detail, since Colleen is often very tired - but this is no time to put the cart before the horse. It is one low number among a bunch of very normal numbers, it is not severely out of range, and most importantly, we are not doctors able to completely interpret the numbers. The last test that came back abnormal was her TCH. Colleen has always suspected her thyroid is crazy, but she has never been actually treated for it. She has had a few tests that show normal levels, a few that have shown elevated TCH (which is hypo) and even one test with a very low TCH (hyper). Sometimes, you wish a doctor would see that and wonder what is going on. (To be fair, TCH is a very sensitive test - and it isn't completely abnormal for it to show different numbers based on time of day, and other factors. Plus, there are other thyroid function tests that take things even further. As one doctor explained to Colleen, she may need to treat it some day, but she doesn't typically treat someone with her numbers NOW.) It really does depend on the doctor - do you want the doctor that will look at the number and say "Here's your prescription - get out" or the doctor who says "Well, that isn't normal - but it is my procedure to not treat people at those levels"? The second doctor is probably the better overall doctor - but the first one may be the one you want when you are feeling desperate for a solution.
As always, Hopkins came through in terms of hospitality, doing their best to keep Colleen comfortable, and just running a generally great operation overall. There is definitely some feeling that Colleen is a bit of a lab rat with these tests, and technically, that is true. Without the research, the hospital can't made advancements - but the research can be a killer, especially when you aren't feeling well and you have that nearly three-hour drive home in the back of your mind as you are going through it.
Colleen has another appointment with the actual doctor in December - hopefully, she will be able to discuss all of this with him at that time. As part of the study she is doing, she also has to return in six months to take a few of the tests again as a follow-up. Hopefully, none of it requires eating a disgusting, far-from-healthy granola bar. ($20 for a piece of crap bar?!?! Seriously?)
The journey has been long, and we still have more questions than answers. The only answer we have really verified is that this isn't Gastroparesis - at least not a traditional form of Gastroparesis. It is something else - but what that something else is, we just don't have any kind of answers on. Maybe all of this testing will actually reveal something beneficial.
Wednesday, July 15, 2015
A Downpour And Clearing Skies......
If you deal with a chronic health issue, you probably have experienced this feeling before: You wake up one morning, and you are feeling pretty good. Perhaps part of your mind goes to "This is the day when I am going to finally beat this!", but by the time dinner time comes around, you are back in bed, wondering why you ever even had any hope at all of your illness suddenly disappearing into the night.
When we were driving down to Baltimore on Wednesday morning, the whole notion of a downpour and clearing skies came to me when I drove right into a tropical-like downpour on the NJ Turnpike. One moment, the skies were fairly clear - the next, you can barely see a few feet in front of you. The rain was essentially taunting us - once you thought you were out of the blue and the skies were clearing, it would start raining again. As Colleen knows, I am not a big fan of driving in the rain, the snow, the fog, or even if a mosquito flies on the windshield. If conditions aren't perfect, I just want to stay alive until they are.
These are the types of conditions people with chronic illnesses face in their every day lives - a massive rainstorm that can last for days on end, followed by a brief clearing of the skies, before another rainstorm rears its ugly head, leading to you even forgetting that you even had a few hours, or maybe even a day, of peace. The roller coaster a chronic illness can put you on can be dizzying - and, more to the point, downright cruel. It can be like a downpour that leads to a flood that sweeps your car away, only for you to be rescued - than repeating that same scenario over and over again. Eventually, the rescues begin to lose their effect - you don't want to be temporarily rescued anymore. You want the floods themselves to stop.
Once again, the trip to Baltimore was a long one, but a fruitful one. Our experiences with Dr. O'Brien-Clarke have been nothing short of fantastic. He actually listens to everything you have to say, talks in a very clear tone, and even is willing to accept and consider all options you throw at him. Although he certainly is the biggest expert in the room, he doesn't shoot you down just because he has a fancy diploma on his wall. I will get to more on that in a moment. Experiencing this doctor and the staff as a whole just leaves you speechless - the entire operation is run like a well-oiled machine. While some hospitals and medical establishments on a whole use the "get them in, get them out" protocol, that does not happen here. He talked to us for at least 45 minutes or so, clearly explaining what he thinks could be going on with Colleen, while also allowing Colleen to actually talk about what is actually going on with her.
Colleen is a naturally nervous and anxious person - she needs a doctor who puts her at ease, and doesn't attempt to make her think that what she is experiencing isn't real. The last thing a patient wishes to hear from any doctor is that everything is in their head - that they can't help you because YOU are, in essence, faking your illness. The last thing anyone with a horrible illness wants to do is travel hours on end to see specialists over something that isn't real. Trust me, Colleen would rather be sipping margaritas on Sanibal Island over having tubes placed in her mouth and endless testing done to her body.
Of course, for family and friends, you likely want to know exactly what came out of this - and not just the part about stopping at a rest stop on the ride home in Delaware for Starbucks and an Auntie Anne's pretzel. Why is it that when you go to a rest stop, the food that comes out of those places tastes like it came out of a gourmet kitchen when you get back to your car? I think they could serve you a piece of cardboard, and you would still login to Yelp proclaiming how you just had the best piece of cardboard ever. Other than the fact that the Starbucks Girl didn't know how to make my Lemon Bar Frapp (which should have been a sign to me to NOT ORDER THAT DARN THING - I can't help myself - you would think the combination of what is essentially lemonade, vanilla, and milk would not be appetizing - but you would be so wrong) Anyway, I digress...
The bottom line is that Dr. O'Brien-Clarke firmly believes that Colleen has a pain issue - pain is her most active physical symptom, along with frequent feelings of her body being on fire, sleepiness, light-headedness, etc. Note that although it appears likely that Colleen doesn't have what you label Gastroparesis, he didn't flat out say that Gastroparesis is ruled out - just extremely unlikely. Hopefully you have learned through reading this blog that Gastroparesis is a very much general, "all-encompassing" term. One day, I (and I am sure the medical establishment) would probably love to be able to take these motility issues and give them more specific names. Since so many people who have Gastroparesis have varying symptoms, it really is impossible for it to all be one condition. There aren't many conditions, for example, that lead to some people bloating like a balloon, while leaving others looking like skin and bones. Yet, Gastroparesis can (and does) cause BOTH symptoms. It just shows how little understanding there is about all of this.
As for Colleen's protocol for now:
1. She will, for about a week, start taking Marinol, which is essentially the pill form of marijuana. Although typically prescribed to aid in the feelings of nausea, it can also have positive effects in other areas, including potentially easing pain. This drug will need to be taken for a week or two - if she isn't showing any signs of improved well-being within that time frame, the drug is not likely to work long-term and can be instantly discontinued;
2. After that trial, she is going to try Remeron. Remeron is actually in the anti-depressant class of drugs, but those types of drugs have proven to sometimes be effective in the treatment of motility disorders. It is again one of those medications that was designed for one thing, but has shown to also have positive effects in other areas of medicine as well.
(As I always say, medications are masks - they are not cures. If you have high blood pressure and take a drug to control it, you aren't curing your high blood pressure. You are taking a drug that essentially balances out your high blood pressure!) The reason you take any medication is because the potential gains (Good health!) may override the potential risks (You mean my skin may turn bright green if I use this medication long term?) Bottom line is that Colleen is trying a few new things to attempt to get herself back into her old routines - she would take 5,000 masking drugs in one dosage every five hours if it meant she could have her life back.
3. Pain management therapy - This is something Colleen has yet to try. Pain management therapy is essentially a series of injections in what doctors call "trigger points". I believe Dr. O'Brien-Clarke also referenced pain patches as a part of this therapy. Colleen has a major trigger point on the left side of her body - a spot where she can feel the pain radiating from. From what I gather, they would inject her in that area and evaluate whether or not her pain subsides.
4. The NIH registry study - Essentially, a series of tests not typically covered by insurance but are free to people who volunteer for the studies. Although these studies are more in the Gastroparesis side of things, we have to remember that Gastroparesis has not been ruled out completely (just seems very doubtful) AND these tests can have benefits beyond just Gastroparesis.
5. I have yet to really research this myself besides going to their web site, but there is an Integrative Digestive Disease Center at Johns Hopkins (http://www.hopkinsmedicine.org/integrative_medicine_digestive_center). This is more in the "alternative medicine" vain. Although Colleen has done the acupuncture therapy in the past, there are many things here that she has yet to try.
6. She also can schedule a neurology consult for autonomic testing. The doctor recommended to us for that essentially has a 6-9 month waiting list, so if Colleen does decide to go in that direction, it will be a long while before we are able to actually get to see him.
Bottom line is that for all of the long hours we are on the road (and Route 70 truly is the worst, longest road in New Jersey history - don't even try to convince me otherwise.), the trips are worth it. They aren't comfortable for Colleen given her illness, but they have purpose - they have meaning - and the pros greatly outweigh the cons. Very few doctors we have seen gave us the feeling that the pros outweigh the cons - I can probably only name two or three.
I just hope one day we don't have to make them anymore - that the downpours subside, and the clear days outweigh the dreary ones until we get to the point where the dreary ones no longer exist. For now, Colleen would accept incremental improvement. Hopefully, one or more of the therapies above provide it.
When we were driving down to Baltimore on Wednesday morning, the whole notion of a downpour and clearing skies came to me when I drove right into a tropical-like downpour on the NJ Turnpike. One moment, the skies were fairly clear - the next, you can barely see a few feet in front of you. The rain was essentially taunting us - once you thought you were out of the blue and the skies were clearing, it would start raining again. As Colleen knows, I am not a big fan of driving in the rain, the snow, the fog, or even if a mosquito flies on the windshield. If conditions aren't perfect, I just want to stay alive until they are.
These are the types of conditions people with chronic illnesses face in their every day lives - a massive rainstorm that can last for days on end, followed by a brief clearing of the skies, before another rainstorm rears its ugly head, leading to you even forgetting that you even had a few hours, or maybe even a day, of peace. The roller coaster a chronic illness can put you on can be dizzying - and, more to the point, downright cruel. It can be like a downpour that leads to a flood that sweeps your car away, only for you to be rescued - than repeating that same scenario over and over again. Eventually, the rescues begin to lose their effect - you don't want to be temporarily rescued anymore. You want the floods themselves to stop.
Once again, the trip to Baltimore was a long one, but a fruitful one. Our experiences with Dr. O'Brien-Clarke have been nothing short of fantastic. He actually listens to everything you have to say, talks in a very clear tone, and even is willing to accept and consider all options you throw at him. Although he certainly is the biggest expert in the room, he doesn't shoot you down just because he has a fancy diploma on his wall. I will get to more on that in a moment. Experiencing this doctor and the staff as a whole just leaves you speechless - the entire operation is run like a well-oiled machine. While some hospitals and medical establishments on a whole use the "get them in, get them out" protocol, that does not happen here. He talked to us for at least 45 minutes or so, clearly explaining what he thinks could be going on with Colleen, while also allowing Colleen to actually talk about what is actually going on with her.
Colleen is a naturally nervous and anxious person - she needs a doctor who puts her at ease, and doesn't attempt to make her think that what she is experiencing isn't real. The last thing a patient wishes to hear from any doctor is that everything is in their head - that they can't help you because YOU are, in essence, faking your illness. The last thing anyone with a horrible illness wants to do is travel hours on end to see specialists over something that isn't real. Trust me, Colleen would rather be sipping margaritas on Sanibal Island over having tubes placed in her mouth and endless testing done to her body.
Of course, for family and friends, you likely want to know exactly what came out of this - and not just the part about stopping at a rest stop on the ride home in Delaware for Starbucks and an Auntie Anne's pretzel. Why is it that when you go to a rest stop, the food that comes out of those places tastes like it came out of a gourmet kitchen when you get back to your car? I think they could serve you a piece of cardboard, and you would still login to Yelp proclaiming how you just had the best piece of cardboard ever. Other than the fact that the Starbucks Girl didn't know how to make my Lemon Bar Frapp (which should have been a sign to me to NOT ORDER THAT DARN THING - I can't help myself - you would think the combination of what is essentially lemonade, vanilla, and milk would not be appetizing - but you would be so wrong) Anyway, I digress...
The bottom line is that Dr. O'Brien-Clarke firmly believes that Colleen has a pain issue - pain is her most active physical symptom, along with frequent feelings of her body being on fire, sleepiness, light-headedness, etc. Note that although it appears likely that Colleen doesn't have what you label Gastroparesis, he didn't flat out say that Gastroparesis is ruled out - just extremely unlikely. Hopefully you have learned through reading this blog that Gastroparesis is a very much general, "all-encompassing" term. One day, I (and I am sure the medical establishment) would probably love to be able to take these motility issues and give them more specific names. Since so many people who have Gastroparesis have varying symptoms, it really is impossible for it to all be one condition. There aren't many conditions, for example, that lead to some people bloating like a balloon, while leaving others looking like skin and bones. Yet, Gastroparesis can (and does) cause BOTH symptoms. It just shows how little understanding there is about all of this.
As for Colleen's protocol for now:
1. She will, for about a week, start taking Marinol, which is essentially the pill form of marijuana. Although typically prescribed to aid in the feelings of nausea, it can also have positive effects in other areas, including potentially easing pain. This drug will need to be taken for a week or two - if she isn't showing any signs of improved well-being within that time frame, the drug is not likely to work long-term and can be instantly discontinued;
2. After that trial, she is going to try Remeron. Remeron is actually in the anti-depressant class of drugs, but those types of drugs have proven to sometimes be effective in the treatment of motility disorders. It is again one of those medications that was designed for one thing, but has shown to also have positive effects in other areas of medicine as well.
(As I always say, medications are masks - they are not cures. If you have high blood pressure and take a drug to control it, you aren't curing your high blood pressure. You are taking a drug that essentially balances out your high blood pressure!) The reason you take any medication is because the potential gains (Good health!) may override the potential risks (You mean my skin may turn bright green if I use this medication long term?) Bottom line is that Colleen is trying a few new things to attempt to get herself back into her old routines - she would take 5,000 masking drugs in one dosage every five hours if it meant she could have her life back.
3. Pain management therapy - This is something Colleen has yet to try. Pain management therapy is essentially a series of injections in what doctors call "trigger points". I believe Dr. O'Brien-Clarke also referenced pain patches as a part of this therapy. Colleen has a major trigger point on the left side of her body - a spot where she can feel the pain radiating from. From what I gather, they would inject her in that area and evaluate whether or not her pain subsides.
4. The NIH registry study - Essentially, a series of tests not typically covered by insurance but are free to people who volunteer for the studies. Although these studies are more in the Gastroparesis side of things, we have to remember that Gastroparesis has not been ruled out completely (just seems very doubtful) AND these tests can have benefits beyond just Gastroparesis.
5. I have yet to really research this myself besides going to their web site, but there is an Integrative Digestive Disease Center at Johns Hopkins (http://www.hopkinsmedicine.org/integrative_medicine_digestive_center). This is more in the "alternative medicine" vain. Although Colleen has done the acupuncture therapy in the past, there are many things here that she has yet to try.
6. She also can schedule a neurology consult for autonomic testing. The doctor recommended to us for that essentially has a 6-9 month waiting list, so if Colleen does decide to go in that direction, it will be a long while before we are able to actually get to see him.
Bottom line is that for all of the long hours we are on the road (and Route 70 truly is the worst, longest road in New Jersey history - don't even try to convince me otherwise.), the trips are worth it. They aren't comfortable for Colleen given her illness, but they have purpose - they have meaning - and the pros greatly outweigh the cons. Very few doctors we have seen gave us the feeling that the pros outweigh the cons - I can probably only name two or three.
I just hope one day we don't have to make them anymore - that the downpours subside, and the clear days outweigh the dreary ones until we get to the point where the dreary ones no longer exist. For now, Colleen would accept incremental improvement. Hopefully, one or more of the therapies above provide it.
Friday, June 26, 2015
I'll Have a Chocolate Chip Cookie With That.....
It has been a long time since I made a new entry here; unfortunately, it is not because Colleen is healed and life for her is back to normal. Her symptoms have actually worsened a tad most days, and days that are defined as "pretty good" for her would be defined as "sick" for a healthy person.
There is always an inspiration behind my blog posts - something happens, and instantly a blogging idea goes into my brain, and off we go. This past week, I left on a trip to Boston with members of my family to go see Fenway Park (more on that in another blog post coming soon). Before the trip, I got into a random conversation with my niece about her baking prowess, and asked her to make me anything that has lemon in it (I can eat, drink, and sleep anything that has a lemon flavor to it). Of course, the conversation lead to Colleen's favorite type of cookie - the basic, yet always a fan favorite, chocolate chip cookie.
As you may have guessed, Colleen ended up with a batch of chocolate chip cookies. A simple gesture with very little planning involved - but sometimes, little gestures can go a long way - a long way to make a person feel at least a bit better about themselves, even as they battle a dreaded condition. No, the first gift one thinks about for a person with a bad digestive illness is a plate of cookies - Colleen will eat them at her own pace. That isn't even really important. Sometimes, a gesture to show someone you care or thinking about them can go a long way in improving the mental side of things - even if only for a brief moment or two.
Now, if you are reading this from afar, I am not necessarily suggesting you run out to your nearest bakery to get a cake for your sick family member. If they can't tolerate an occasional desert at all, then you really shouldn't feed the temptation. But there are a lot of little things one can do to make life feel a bit better - a bit more special - for a sick family member. Little things can go a long way - especially if the person you are caring for is too ill to do the big things you may have in your mind.
As stated above, Colleen's condition is not better - it is not improving. As always, you look at someone with a disease like this from the outside, and you may not even realize just how much pain they are in - Colleen is on the smaller side to begin with, and because she doesn't get the bloat that some people with digestive issues get, she may look just as healthy now as you ever remember her. As I have said previously, if someone has a cast on their leg, you likely will instantly assume it is broken. That person has a visual clue to lead you to what may actually be wrong with them. If someone nearby is sneezing, you may conclude they have a cold - or allergies. This time, your sense of hearing can lead you to a reasonable conclusion. There is no sense that can lead you to a reasonable conclusion about someone who is sick on the inside. They look normal, often act normal in an attempt to hide their illness, etc. There is no visual clue sometimes - often, no audio ones either. Someone on the street isn't going to walk up to her and ask "What is wrong?", because nothing even appears to be wrong.
But sometimes, we have to take a bit of a step back. Look hard enough, and you will quickly see that the person is not looking quite as "normal" as you would expect. There may be a look of defeat in their eyes - you may catch onto a vibe of despair, of frustration, anger - all kinds of emotions that sometimes you can figure out just by observation, even if they APPEAR to be normal.
Colleen has dealt with this condition for four years - she has been to at least ten doctors, various specialists. She has tried various medications, has seen a chiropractor or two, a holistic doctor, and a few scam artists who pray on the sick in order to put some extra money in their own pockets. (By the way, if you are a healthy person reading this and are saying "I would never fall for any kind of scam!", you may be in denial - a sick person has the mentality of "Well, maybe this actually will work - and I will never know unless I try it!" Yes, that is exactly what a scammer wants - but there are legitimate people out there who aren't scammers who still try approaches that don't work - so figuring out the good people who just can't help vs. the bad people who just want to take as much money away from you as possible can be hard). She has tried needles and aromatherapy - two tried and true methods that can get you real results - without any kind of relief.
Why is that? We don't know - but there is one very real possibility: We are fighting one thing, but the real problem is something entirely different. If your car breaks down due to a dead battery, and the mechanic decides to replace your muffler, the odds are that the car won't work. The new muffler may help the car in other ways, but it still won't accomplish what replacing the dead battery will accomplish: Getting the car to actually start again. That could be happening here - the things Colleen has tried (like the aromatherapy) are not likely hurting her system in any way - and could be improving something within her body as a whole. But it isn't fixing the PROBLEM, because the treatments she has tried are designed for another problem that she doesn't actually have. How do you figure out the exact issue Colleen has? We have been trying to figure that out for four years now. Maybe the doctor in Baltimore will get us there (We visit him again in July), or maybe he can refer us to someone else in his hospital who may start us on a new path. Or perhaps we are actually on the correct path, but keep choosing the wrong fork in the road. Whatever it is, things haven't improved - that much is certain - and Colleen is left to fight a disease with every ounce of her energy, while also keeping a smile on her face and a good attitude despite fighting a true demon inside of her.
As a loved one of someone with any kind of medical issue, you need to be your loved one's advocate. You have to make sure they KNOW you are on their side - that you care just as much today as you did a year ago. Or five years ago. You don't ever want your sick relative to have to worry about where you stand - because they have enough to worry about. So keep fighting along side of them, go to every appointment you can get to, and let them know every day how much you love them. In essence, you can be their chocolate chip cookie.
There is always an inspiration behind my blog posts - something happens, and instantly a blogging idea goes into my brain, and off we go. This past week, I left on a trip to Boston with members of my family to go see Fenway Park (more on that in another blog post coming soon). Before the trip, I got into a random conversation with my niece about her baking prowess, and asked her to make me anything that has lemon in it (I can eat, drink, and sleep anything that has a lemon flavor to it). Of course, the conversation lead to Colleen's favorite type of cookie - the basic, yet always a fan favorite, chocolate chip cookie.
As you may have guessed, Colleen ended up with a batch of chocolate chip cookies. A simple gesture with very little planning involved - but sometimes, little gestures can go a long way - a long way to make a person feel at least a bit better about themselves, even as they battle a dreaded condition. No, the first gift one thinks about for a person with a bad digestive illness is a plate of cookies - Colleen will eat them at her own pace. That isn't even really important. Sometimes, a gesture to show someone you care or thinking about them can go a long way in improving the mental side of things - even if only for a brief moment or two.
Now, if you are reading this from afar, I am not necessarily suggesting you run out to your nearest bakery to get a cake for your sick family member. If they can't tolerate an occasional desert at all, then you really shouldn't feed the temptation. But there are a lot of little things one can do to make life feel a bit better - a bit more special - for a sick family member. Little things can go a long way - especially if the person you are caring for is too ill to do the big things you may have in your mind.
As stated above, Colleen's condition is not better - it is not improving. As always, you look at someone with a disease like this from the outside, and you may not even realize just how much pain they are in - Colleen is on the smaller side to begin with, and because she doesn't get the bloat that some people with digestive issues get, she may look just as healthy now as you ever remember her. As I have said previously, if someone has a cast on their leg, you likely will instantly assume it is broken. That person has a visual clue to lead you to what may actually be wrong with them. If someone nearby is sneezing, you may conclude they have a cold - or allergies. This time, your sense of hearing can lead you to a reasonable conclusion. There is no sense that can lead you to a reasonable conclusion about someone who is sick on the inside. They look normal, often act normal in an attempt to hide their illness, etc. There is no visual clue sometimes - often, no audio ones either. Someone on the street isn't going to walk up to her and ask "What is wrong?", because nothing even appears to be wrong.
But sometimes, we have to take a bit of a step back. Look hard enough, and you will quickly see that the person is not looking quite as "normal" as you would expect. There may be a look of defeat in their eyes - you may catch onto a vibe of despair, of frustration, anger - all kinds of emotions that sometimes you can figure out just by observation, even if they APPEAR to be normal.
Colleen has dealt with this condition for four years - she has been to at least ten doctors, various specialists. She has tried various medications, has seen a chiropractor or two, a holistic doctor, and a few scam artists who pray on the sick in order to put some extra money in their own pockets. (By the way, if you are a healthy person reading this and are saying "I would never fall for any kind of scam!", you may be in denial - a sick person has the mentality of "Well, maybe this actually will work - and I will never know unless I try it!" Yes, that is exactly what a scammer wants - but there are legitimate people out there who aren't scammers who still try approaches that don't work - so figuring out the good people who just can't help vs. the bad people who just want to take as much money away from you as possible can be hard). She has tried needles and aromatherapy - two tried and true methods that can get you real results - without any kind of relief.
Why is that? We don't know - but there is one very real possibility: We are fighting one thing, but the real problem is something entirely different. If your car breaks down due to a dead battery, and the mechanic decides to replace your muffler, the odds are that the car won't work. The new muffler may help the car in other ways, but it still won't accomplish what replacing the dead battery will accomplish: Getting the car to actually start again. That could be happening here - the things Colleen has tried (like the aromatherapy) are not likely hurting her system in any way - and could be improving something within her body as a whole. But it isn't fixing the PROBLEM, because the treatments she has tried are designed for another problem that she doesn't actually have. How do you figure out the exact issue Colleen has? We have been trying to figure that out for four years now. Maybe the doctor in Baltimore will get us there (We visit him again in July), or maybe he can refer us to someone else in his hospital who may start us on a new path. Or perhaps we are actually on the correct path, but keep choosing the wrong fork in the road. Whatever it is, things haven't improved - that much is certain - and Colleen is left to fight a disease with every ounce of her energy, while also keeping a smile on her face and a good attitude despite fighting a true demon inside of her.
As a loved one of someone with any kind of medical issue, you need to be your loved one's advocate. You have to make sure they KNOW you are on their side - that you care just as much today as you did a year ago. Or five years ago. You don't ever want your sick relative to have to worry about where you stand - because they have enough to worry about. So keep fighting along side of them, go to every appointment you can get to, and let them know every day how much you love them. In essence, you can be their chocolate chip cookie.
Monday, December 1, 2014
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.
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.
Thursday, November 27, 2014
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).
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?
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