Years ago, my friends and I had a summer tradition where we would all go to Great Adventure, one of the many theme parks that exist in my area. For me, the day was more about being with my friends than the actual destination, because anyone who knows me would tell you that I have no interest in going on most rides. It didn't bother me to sit on the sidelines, or watch people's things as they went on the rides - it was my choice to not participate in the actual activities during those days. I could have gone on rides if I wanted to - I wasn't injured, wasn't sick, knew all about the safety record of theme parks, etc.
How does this relate to holidays and Gastroparesis? It seems to me, just by reading Facebook posts and blogs, that many family members of those who are sick think it should be like the theme park example above: If you are sick, just don't eat! Come anyway. You are hiding behind your illness in order to avoid the holiday season.
If only that were true - as described above, everything I did was by choice. In the case of holidays and serious illness, there is no choice. You don't have a choice to put a big blob of mashed potatoes on your dinner plate, or grab a slice of cranberry sauce. Your body physically doesn't allow you to do so. Using my example above, when I was at my sickest point in 2007-2008, if we were still doing the trips at that time, I wouldn't have been able to go. That wouldn't have really been my choice - my choice would have been to go - it was forced upon me: My body wouldn't have physically been able to do so.
It isn't really as easy as "Just go and see your family". It is "Just go, see your family, and watch them partake in the activity that makes you so sick." There is also a mental aspect to the whole situation , as well. As a patient, you don't want people to walk on eggshells. You don't want them to think twice about eating a piece of pecan pie in front of you. And of course, there is that feeling that "What if I do eat something, then need to throw up five minutes later?" You want them to enjoy their holiday without the added effect of feeling guilty eating in front of someone who can't.
Just talking to Colleen about this situation is enlightening in its own right. Talk to your loved one if they are having a difficult time during this time of the year. Do not attempt to force their hand - be impartial to the situation - leave the ball in their court whether or not they want to attempt to visit family and/or friends during this time. Colleen feels all the emotions I am sure many of you feel - where a simple Facebook picture can make her sad, or the thoughts of another year missed with the people she loves makes her angry about the disease. Then, of course, reading the "after holiday" posts about all that went right on that day, when she is feeling that everything in her life is just wrong (Obviously, I am not saying to not post these things on Facebook if you know someone who is sick. I am just simply pointing out the type of emotions they can bring out in someone who is sick and reading them. These emotions are real. I remember when my dad was going through his cancer treatments that he would sometimes talk of watching his grandson earn a varsity letter in baseball - he didn't get to see that day, but it was something he saw in the future that he may not be able to get to see - as I have said many times, I don't equate any disease to any other, but the emotions they bring out can be similar. When Colleen sees Thanksgiving and Christmas on the horizon, that feeling of the fact that she may not get to experience them with her family yet again brings out the emotions. Of course, Christmas 2013 has yet to come, so the hope that this evil thing inside of her will get better within the next month is still very much alive. ) As a loved one, if you have trouble understanding this, it is as simple as this: Think back to when your patient was healthy. Did they ever miss Thanksgiving, Christmas, or whatever holidays you happen to celebrate? Do you think that one day they woke up and just decided they no longer want to partake in those festivities? Colleen is more of a warm weather person than a cold weather person, but this time of year still rated very high on her list of favorites.
I do want to say that, from a personal standpoint, I don't get the sense from my family or her family that they feel in any way that Colleen is avoiding the holidays for reasons beyond being ill. I see a sincerity when they ask me about Colleen and how she is doing, how the latest trips to the doctor have fared, and what is going on in the future - but I do read the Facebook posts from people who say their families do have the resentment. And families who tell their loved one to not even show up because the throwing up after eating "sets a bad example for their children". It just makes me angry - and I am beyond the years where I easily get angry - to read those types of things. They have absolutely no idea how the sick person is feeling - how much torture this time of year can be. Their sick loved ones only wish they could once again have a choice, because if they did, the choice would be an easy one: Partake in the festivities. If only it were that simple.
Friday, November 29, 2013
Monday, November 18, 2013
Approaching This From a New Angle
A few years ago, Colleen got in touch with a person who marketed himself as someone who will (not may - WILL!) cure just about anyone of any stomach ailment known to mankind. His approach was mostly military style - following his plan from beginning to end with no deviation was the only way his system would work - and, of course, if you didn't get better as the program went along, it must have been something you did, not something wrong with the system itself. This is one of the oldest tricks in the book for a snake oil salesman - "It works 100% of the time!" Of course it does - because the only results you publish are the success stories. Everyone who wasn't a success story failed because they were too weak - or drank 9 ounces of a beverage when they should have only sipped 8.5. That last example may be a bit dramatic - but it lets you know exactly how this individual operated. Think about being someone who is sick - you reach out to someone who asks for a lot of money upfront (uh oh), and in return, you get a Gastrointestinal Bully - someone who refuses to accept the fact that perhaps his program isn't for everyone, and isn't willing to adjust things based on the "patient" he is attempting to treat.
On top of that, Colleen reached out to this man a few months after she stopped the program because she was going through a rough time. The answer she got from him was along the lines of "If you aren't feeling well, go to the ER". That is when everything came together a bit - he has our money already, so he doesn't care if Colleen is feeling well (SUCCESS story!) or weak (Colleen's fault!). All he cared about was the bottom line.
So, how does the above story relate to a new approach? It doesn't directly - it is meant to show what types of people you are going to run into in your journey, and the types of people who will try to con you when you are at your most desperate point. Do not feel bad if you have fallen for the various cons out there that are supposed to treat this disease - for one, you are not alone. For another, having this disease is so horrible that it is a perfectly natural human reaction to try just about anything that is promoted as a "cure". The bottom line when it comes to this disease is that there really is not a known cure - and no bottle of apple sauce with a "mystery ingredient!" will change that.
The new approach Colleen is taking, however, is a lot more promising than what is described above. The reasoning is simple: It makes a lot of sense.
Recently, Colleen found a Facebook site dedicated to "Healing Gastroparesis Naturally". Let me start by looking at the title of the page itself: Healing. Healing is such a strong word in its own sense; it packs a different kind of punch than "Curing" does. Healing is more of an approach to healing your body - healing the inflammation within your body - rather than try a drug with questionable side effects or go through a risky surgery that may or may not help you. (Please do not take this as meaning "If you are feeling great taking Domperidone, STOP and try this other approach!" Of course not - if anything you are doing is actually working, you shouldn't stop. If you had a surgery and your life is back to normal, I am definitely not saying the surgery was a waste of time. This is more geared towards those who have tried so many things with absolutely no relief).
So, what does this entail? It entails a complete diet change - at least initially, though many of the ideas are the types of ideas you should probably follow for life. Sure, even the healthiest person will occasionally buy a bag of cookies made with 150 ingredients. But when you are in a situation like Colleen is in, you really cannot be even eating one crumb out of that bag. Giving up processed foods is probably the #1 thing in her new diet, along with completely getting rid of dairy products, white flour, white rice, etc. This won't be the easiest thing for Colleen to do; she is an ice cream nut, uses yogurt-based butter as a spread on things she eats, and has used white rice many times when all else has failed. On top of that, as I am sure many other people with motility disorders have experienced in the past, you will sometimes have those good days where your first thought is: "Screw it - I feel good so I am going to eat half of that cherry pie!" I think everyone knows that this probably is not the wisest idea; but, by the same token, it is an understandable position - you go months or years not being able to eat the things you want to eat - the moment you are able to, you probably aren't going to reach for the organic green beans in your refrigerator. You want the sinful stuff! I get it - Colleen can relate to that - and it will probably be one of her biggest challenges when she does have a good day. But for now, the key for her is making those good days come more consistently - until she gets to the point where there isn't anything but good days.
It also entails something called Essential Oils. I have told myself many times in this blog to not even pretend to write about stuff you don't completely understand; it doesn't do the reader any good, and it takes away from my overall credibility. So, given that, I am not going to try to pretend I understand everything that Essential Oils are supposed to do. You can look them up online, or try the site that Colleen is using (http://www.essential7.com) to gain a better understanding of what they are designed to do.
There have already been success stories in using this approach to try to fight off Gastroparesis, or whatever the motility order may be. However, the one thing you gather from this program is that the person running it isn't guaranteeing your health - or saying that if you follow her program, you are going to feel completely healthy within months. She isn't being pushy, isn't sending e-mails asking us to buy this or buy that, isn't steering us towards high-cost stuff that isn't anything more than water with a few vitamins mixed in, etc. Instead, she is letting her products do the talking, and letting her clientele pretty much do what they want to do with the information she provides (while also willingly answering questions from people on Facebook). Also note that her life isn't dedicated to Gastroparesis, per se - her essential oils do cover a broad spectrum of problems. But, for the purposes of this blog, the digestive system is the most important thing.
Obviously, I will report any findings we have from this approach - with the disclaimer that any findings we have with any approach are not "one size fits all". If Colleen does this and starts feeling awesome, I am not going to guarantee that you will feel awesome as well. If Colleen does this and has little or no change to her symptoms, I am not going to say the program doesn't work. I would just say the program didn't work for COLLEEN. That is as far as I can personally go with any of my reviews, which also includes the review I gave for the program in the beginning of this blog post.
As a loved one, you just have to continue to support the patient - anything they try to make themselves better are things you should not only support, but things you should get a better understanding of yourself. I now understand what a snake oil salesman is like, and it isn't pretty. Become your own expert on whatever is ailing your loved one - because it is the only way you will even begin to understand what they go through every day.
On top of that, Colleen reached out to this man a few months after she stopped the program because she was going through a rough time. The answer she got from him was along the lines of "If you aren't feeling well, go to the ER". That is when everything came together a bit - he has our money already, so he doesn't care if Colleen is feeling well (SUCCESS story!) or weak (Colleen's fault!). All he cared about was the bottom line.
So, how does the above story relate to a new approach? It doesn't directly - it is meant to show what types of people you are going to run into in your journey, and the types of people who will try to con you when you are at your most desperate point. Do not feel bad if you have fallen for the various cons out there that are supposed to treat this disease - for one, you are not alone. For another, having this disease is so horrible that it is a perfectly natural human reaction to try just about anything that is promoted as a "cure". The bottom line when it comes to this disease is that there really is not a known cure - and no bottle of apple sauce with a "mystery ingredient!" will change that.
The new approach Colleen is taking, however, is a lot more promising than what is described above. The reasoning is simple: It makes a lot of sense.
Recently, Colleen found a Facebook site dedicated to "Healing Gastroparesis Naturally". Let me start by looking at the title of the page itself: Healing. Healing is such a strong word in its own sense; it packs a different kind of punch than "Curing" does. Healing is more of an approach to healing your body - healing the inflammation within your body - rather than try a drug with questionable side effects or go through a risky surgery that may or may not help you. (Please do not take this as meaning "If you are feeling great taking Domperidone, STOP and try this other approach!" Of course not - if anything you are doing is actually working, you shouldn't stop. If you had a surgery and your life is back to normal, I am definitely not saying the surgery was a waste of time. This is more geared towards those who have tried so many things with absolutely no relief).
So, what does this entail? It entails a complete diet change - at least initially, though many of the ideas are the types of ideas you should probably follow for life. Sure, even the healthiest person will occasionally buy a bag of cookies made with 150 ingredients. But when you are in a situation like Colleen is in, you really cannot be even eating one crumb out of that bag. Giving up processed foods is probably the #1 thing in her new diet, along with completely getting rid of dairy products, white flour, white rice, etc. This won't be the easiest thing for Colleen to do; she is an ice cream nut, uses yogurt-based butter as a spread on things she eats, and has used white rice many times when all else has failed. On top of that, as I am sure many other people with motility disorders have experienced in the past, you will sometimes have those good days where your first thought is: "Screw it - I feel good so I am going to eat half of that cherry pie!" I think everyone knows that this probably is not the wisest idea; but, by the same token, it is an understandable position - you go months or years not being able to eat the things you want to eat - the moment you are able to, you probably aren't going to reach for the organic green beans in your refrigerator. You want the sinful stuff! I get it - Colleen can relate to that - and it will probably be one of her biggest challenges when she does have a good day. But for now, the key for her is making those good days come more consistently - until she gets to the point where there isn't anything but good days.
It also entails something called Essential Oils. I have told myself many times in this blog to not even pretend to write about stuff you don't completely understand; it doesn't do the reader any good, and it takes away from my overall credibility. So, given that, I am not going to try to pretend I understand everything that Essential Oils are supposed to do. You can look them up online, or try the site that Colleen is using (http://www.essential7.com) to gain a better understanding of what they are designed to do.
There have already been success stories in using this approach to try to fight off Gastroparesis, or whatever the motility order may be. However, the one thing you gather from this program is that the person running it isn't guaranteeing your health - or saying that if you follow her program, you are going to feel completely healthy within months. She isn't being pushy, isn't sending e-mails asking us to buy this or buy that, isn't steering us towards high-cost stuff that isn't anything more than water with a few vitamins mixed in, etc. Instead, she is letting her products do the talking, and letting her clientele pretty much do what they want to do with the information she provides (while also willingly answering questions from people on Facebook). Also note that her life isn't dedicated to Gastroparesis, per se - her essential oils do cover a broad spectrum of problems. But, for the purposes of this blog, the digestive system is the most important thing.
Obviously, I will report any findings we have from this approach - with the disclaimer that any findings we have with any approach are not "one size fits all". If Colleen does this and starts feeling awesome, I am not going to guarantee that you will feel awesome as well. If Colleen does this and has little or no change to her symptoms, I am not going to say the program doesn't work. I would just say the program didn't work for COLLEEN. That is as far as I can personally go with any of my reviews, which also includes the review I gave for the program in the beginning of this blog post.
As a loved one, you just have to continue to support the patient - anything they try to make themselves better are things you should not only support, but things you should get a better understanding of yourself. I now understand what a snake oil salesman is like, and it isn't pretty. Become your own expert on whatever is ailing your loved one - because it is the only way you will even begin to understand what they go through every day.
Tuesday, November 12, 2013
Feeling a Bit Fatigued....
If you have been reading these blog posts, you know how much of a roller coaster Colleen has been on. From being diagnosed with Gastroparesis to having a second test come back (relatively) normal, to having blood tests show other possibilities. The list goes on and on - when you reach this point, sometimes you do have to take a step back and consider what it all means. What did all of those digestive tests really show? What clues are hidden in plain sight within her bloodwork? What steps can she take next to try to get to the bottom of this? When you are very sick like Colleen has been, things can go a million miles per hour - your brain gets scrambled with so much information that it gets to the point where absolutely nothing makes sense.
Recently, our primary doctor ran a lot of blood tests for Colleen. Not all of the bloodwork was ordered by him - some was from other scripts given to us over the past several months. In the end, it lead to a lab report almost as long as "War and Peace", and provided a few interesting clues but without any type of diagnosis. Of course, no bloodwork in and of itself can lead to a diagnosis. I have written at least once on here about blood results being nothing more than a "number on a page". And that is exactly what they are - you can't look at a number and determine whether or not someone is healthy or sick. The numbers are just supposed to help guide you in a direction.
Her bloodwork this time reveal a very low Cortisol AM number. Low Cortisol is typically associated with a disease called Addison's Disease, but that disease is so rare (1 in 100,000) that you have to also look in other directions. One of the directions it will lead you in is a condition called Adrenal Fatigue. If you look up Adrenal Fatigue online, you will see a million different symptoms associated with it - you read enough about it, you may even be convinced that you have it. It isn't about reading a list of symptoms and trying to fit your square peg into a round hole - it is about looking for the most obvious clues and putting the pieces of the puzzle together. Not many doctors are going to come out and say "You have Adrenal Fatigue Syndrome". It is probably treated similarly as Chronic Fatigue Syndrome is - some doctors recognize it, some are skeptical of it, and hardly any of them truly understand it.
This is not to say Colleen has it, or doesn't have it - all we know for now is that the results of a blood test reveal low Cortisol levels. They also revealed high B-12 levels (which is not clinical - again, another possible clue that needs to be looked at). If you look up "high B-12" online, you will be scared by some of the stuff you read. Elevated B-12 levels in the bloodstream can certainly be a response to a serious condition - but that doesn't mean much of anything. If you have a serious condition, it will likely first show up elsewhere, and the high B-12 will just be one of those "Well, you have this disease - and that is why your B-12 is starting to rise". Any doctor that looks at elevated B-12 and concludes you have a serious problem just based on that info alone is likely a doctor you want to run away from.
So, what to make of this - low Cortisol; elevated B-12; a thyroid that in one test showed she was hyperactive, and in another test, showed she was low-normal. Of course, all of this added on to the fact that she has a serious stomach ailment and is consistently fatigued. There has to be a doctor out there somewhere who looks at the results of every test she has had, takes a deep look, and comes up with something that is the answer to this 3-year old riddle. A riddle that is severely impacting a person's entire life.
Sometimes, we need to take that step back - not jam ourselves with so much information. "One step at a time" has been one of my mantras to Colleen since Day 1. But it seems that every step we take is a baby step. We need a giant leap forward.
Recently, our primary doctor ran a lot of blood tests for Colleen. Not all of the bloodwork was ordered by him - some was from other scripts given to us over the past several months. In the end, it lead to a lab report almost as long as "War and Peace", and provided a few interesting clues but without any type of diagnosis. Of course, no bloodwork in and of itself can lead to a diagnosis. I have written at least once on here about blood results being nothing more than a "number on a page". And that is exactly what they are - you can't look at a number and determine whether or not someone is healthy or sick. The numbers are just supposed to help guide you in a direction.
Her bloodwork this time reveal a very low Cortisol AM number. Low Cortisol is typically associated with a disease called Addison's Disease, but that disease is so rare (1 in 100,000) that you have to also look in other directions. One of the directions it will lead you in is a condition called Adrenal Fatigue. If you look up Adrenal Fatigue online, you will see a million different symptoms associated with it - you read enough about it, you may even be convinced that you have it. It isn't about reading a list of symptoms and trying to fit your square peg into a round hole - it is about looking for the most obvious clues and putting the pieces of the puzzle together. Not many doctors are going to come out and say "You have Adrenal Fatigue Syndrome". It is probably treated similarly as Chronic Fatigue Syndrome is - some doctors recognize it, some are skeptical of it, and hardly any of them truly understand it.
This is not to say Colleen has it, or doesn't have it - all we know for now is that the results of a blood test reveal low Cortisol levels. They also revealed high B-12 levels (which is not clinical - again, another possible clue that needs to be looked at). If you look up "high B-12" online, you will be scared by some of the stuff you read. Elevated B-12 levels in the bloodstream can certainly be a response to a serious condition - but that doesn't mean much of anything. If you have a serious condition, it will likely first show up elsewhere, and the high B-12 will just be one of those "Well, you have this disease - and that is why your B-12 is starting to rise". Any doctor that looks at elevated B-12 and concludes you have a serious problem just based on that info alone is likely a doctor you want to run away from.
So, what to make of this - low Cortisol; elevated B-12; a thyroid that in one test showed she was hyperactive, and in another test, showed she was low-normal. Of course, all of this added on to the fact that she has a serious stomach ailment and is consistently fatigued. There has to be a doctor out there somewhere who looks at the results of every test she has had, takes a deep look, and comes up with something that is the answer to this 3-year old riddle. A riddle that is severely impacting a person's entire life.
Sometimes, we need to take that step back - not jam ourselves with so much information. "One step at a time" has been one of my mantras to Colleen since Day 1. But it seems that every step we take is a baby step. We need a giant leap forward.
Saturday, November 2, 2013
Spewing Negativity in Positive Situations: Never a Good Idea
Imagine a scenario where you are sick for 2-3 years. Every day is a constant struggle - doing the simple things in life (such as eating!) becomes a chore because you don't know how you are going to feel an hour after you eat your meal. You know, by experience, that you can have the same type of meal on two consecutive nights, and have your body react to in completely different ways. You get to the point where you have no hope - thinking nothing is ever going to come along that is going to make you healthy again.
You wake up one morning, and pretty much from out of the blue, you suddenly feel better. Your first thought may be "I've already been through this before - I am not getting a false sense of security!" But one day becomes two. Two days becomes a week. A week becomes a month. A month becomes a year..you get the picture.
This entry goes a bit further than that - imagine the joy you have when this happens. You feel great - you feel as if you want to tell the world, because you want to give everyone a sense of hope - that you became "cured", and that it can happen to just about anyone. She contacts Crystal Saltrelli, the biggest Gastroparesis advocate you will ever find, and she shares her story with her. Crystal in turn shares the story on Facebook.
Bottom line? Leave your negativity at the front door and don't come outside to play. As you may know, if you are a sufferer or even a loved one of a sufferer, negative thoughts are a major problem with this condition. And for good reason - your life has been stripped away from you. I can definitely understand the feeling of "Why is this person "cured" and not me?", but that should not bring you to post your negative energy in a thread geared towards the positive. There is enough negativity out there about Gastroparesis and motility disorders in general - there are forums and support groups where it is perfectly fine and encouraged to vent, to talk to other people who are sick, and get things off of your chest. For many sufferers, it is their only outlet - as they don't have loved ones willing to talk or understand. And even if they do have loved ones who are willing, the bottom line remains that the only people who understand a sufferers dilemma are other people who are suffering with the disease. My post is not intended to discourage that practice in general - it is a GOOD thing to get things off of your chest. There is just a time and a place for it - when you go to a sporting event and your favorite team wins, your first thought typically is not how poorly someone played. You think about the positive - the team WON - and worry about the negative the next time they actually LOSE. Same thing here - a person WON their battle...so why are we complaining about it?
You wake up one morning, and pretty much from out of the blue, you suddenly feel better. Your first thought may be "I've already been through this before - I am not getting a false sense of security!" But one day becomes two. Two days becomes a week. A week becomes a month. A month becomes a year..you get the picture.
This is how most Gastroparesis sufferers become "cured" of the disease. (If only doctors and researchers can figure out why this happens - why suddenly a body that refuses to let you live lets you live again - we would be well on our way of figuring out answers that can lead to a real cure)
This entry goes a bit further than that - imagine the joy you have when this happens. You feel great - you feel as if you want to tell the world, because you want to give everyone a sense of hope - that you became "cured", and that it can happen to just about anyone. She contacts Crystal Saltrelli, the biggest Gastroparesis advocate you will ever find, and she shares her story with her. Crystal in turn shares the story on Facebook.
You then read the replies to the post and end up slapping yourself in the head. The negativity is actually painful to read - some people going as far as pretty much saying that it is impossible or that the person who had the disease resolve probably had a different diagnosis. You read people talking about the fact that they are "RNs" and they know this can't really happen. (I have all the respect in the world for doctors, nurses, specialists, etc. At the same time, if the best motility doctors in the country don't understand everything there is to know about the disease and how it operates, then how can I expect anyone else in the medical community to really know?)
Bottom line? Leave your negativity at the front door and don't come outside to play. As you may know, if you are a sufferer or even a loved one of a sufferer, negative thoughts are a major problem with this condition. And for good reason - your life has been stripped away from you. I can definitely understand the feeling of "Why is this person "cured" and not me?", but that should not bring you to post your negative energy in a thread geared towards the positive. There is enough negativity out there about Gastroparesis and motility disorders in general - there are forums and support groups where it is perfectly fine and encouraged to vent, to talk to other people who are sick, and get things off of your chest. For many sufferers, it is their only outlet - as they don't have loved ones willing to talk or understand. And even if they do have loved ones who are willing, the bottom line remains that the only people who understand a sufferers dilemma are other people who are suffering with the disease. My post is not intended to discourage that practice in general - it is a GOOD thing to get things off of your chest. There is just a time and a place for it - when you go to a sporting event and your favorite team wins, your first thought typically is not how poorly someone played. You think about the positive - the team WON - and worry about the negative the next time they actually LOSE. Same thing here - a person WON their battle...so why are we complaining about it?
So, when those rare positive posts are put up, think twice before you decide to lash out. People who suffer with these conditions need to have all of the hope they can get - and reading a success story brings positive energy. And whether or not it cures you or not, there is never anything wrong with some positive energy in your life. The bottom line is that the person who was sick with Gastroparesis - or whatever the motility disorder may have been - now feels CURED of the disease. Nothing you can say is going to change that - saying it is impossible? Well, call her on the phone or tell her to her face that what has happened to her is impossible. Or look in the mirror, and begin to think about the fact that sometimes the impossible is very much possible.
Subscribe to:
Posts (Atom)