So, those of us living with debilitating chronic illness know just how rough the road of chronic illness can be. Let's face it, we go through things well people can't even imagine. The pain, the sick, the "cures" that often make us sick. All the appointments and tests and bad news. Then there's everyday life and the world that goes on around us, that just doesn't stop because you can't get going. It all can be so overwhelming. If we are very lucky though, we have one or two people in our lives who we can count on to be there through it all. Those people that have seen our worst, and are still there pulling and cheering us through it. Our Angles in Disguise.
These are the people who have been there for EVERYTHING. The good, the bad, and the downright ugly. And let me start by saying, the "EVERYTHING" is as far from glamorous as it gets. We're talking about holding your hair after a night of Jager Bombs type messes. Hauling said drunken body (or in our case sick, broken body) off the bathroom floor, changing you into pajamas (or at the very least stripping your soiled clothing and tossing them somewhere you won't trip on them) type jobs. These people have spent hours sitting in the emergency room with you. They can rattle off your drug allergies at triage, and know where exactly your med list is. They know to tell the nurses to try hot blankets before starting an IV because it's probably going to take at least three or four tries to get that winning line in those junky veins, and can tell the nurse what your record is for failed line attempts. They also know which area is more likely for a successful hit. They tell the lab tech who comes for blood to use the butterfly needle, and not to be afraid to tie the tourniquet too tight for the very same reason. They sit there and hold your hand and distract you while you wait for the pain meds to take hold. They know exactly when those meds are wearing off just by looking at you or listening to you breathe. They sit there with you for hours waiting for the final bag of fluids and meds to go in before they can finally bundle you off home. Likewise, they also sit there for the hours it can take before the room you are to be admitted to upstairs is ready for you. They will be the one to go home and know exactly what supplies to gather to bring you in that room. They will hold the universe together until you can come home and slowly try to get back into "routine". They just know, and they just do.
Our Angels often are not only our saviour in times of need, but they are our sounding boards. They are there for us when we have those really disappointing appointments. They wipe our tears when the news isn't what we have been hoping for. They hold and squeeze your hand with a reassuring smile when you hear that the drugs you are being put on might feel worse than the sickness. They cheer and celebrate with us when we get the good news. They get excited right along with you when, after years of misdiagnosis and doctors who have no clue, you finally get a proper diagnosis from an amazing doctor. They will be right by your side, doing the happy dance, if you are lucky enough to hear the word "remission".
We often forget that our Angels are going through just as much as we are with our illness, if not sometimes more, as they take care of us and manage lives of their own. Although we don't mean to at all, these amazing people can sometimes be taken for granted. It is sometimes a thankless job. My point? Remember to say a very heartfelt thank you to your Angels. Do what you can to show them you appreciate every single thing they do for you. Take them out for a meal or a movie on your good days. Make them a special meal at home when you can. Give them a token of appreciation. Whatever you do, make sure you look them in the eye and say a very sincere, heartfelt thank you. Make sure they know that without them, many aspects of your life would be impossible to manage. Make sure they understand just how much you appreciate them. Let them feel like the Angels they truly are.
This post is dedicated to my Angels.
My husband Chris, who pretty much holds life up in our house. These last couple years have been pretty bad for me health wise, and he's been the one holding all the pieces together. He makes sure the kids have lunches for school, keeps the house clean, makes sure we all have clean undies.....pretty much everything. When I fall apart, he gathers me up and puts me back together. It's so cliché to say "I don't know what I'd do without him", but its nothing short of the truth. I hope you know you truly are my Superman.
My mom Rhonda, who will drop anything, anytime to do anything for me. She's sat with me through many long ER visits, and rarely misses a day visiting me when I'm in the hospital. When we need help with the girls she's there, no questions asked. When I'm feeling down she scoops me up. She's my mom, but she's so much more. I hope you know just how much everything you do for us is truly appreciated. I can't thank you enough for EVERYTHING. I am so lucky to not only have you as my mom, but also for the fact that I have you as a friend in my corner.
Sunday, 7 June 2015
Saturday, 7 March 2015
When the Treatment Hurts as Much as the Sick
When you live with the particularly unpleasant and often blindingly painful symptoms of Behcet's, you're often ready to try anything for relief. Like really, anything. Like if someone told you that attempting naked cartwheels down your back alley at sunrise was going to help you, you'd totally try it (assuming you can move at sunrise....arthritis doesn't really work like that!) Especially when you've been waiting for a diagnosis and treatment for a couple years; living with symptoms for countless years. So when your doctor writes this magical script and hands it to you, you have pretty high hopes. It sounds all magical and you see unicorns and rainbows. You float to the pharmacy on a pink cloud.
Then you fill that prescription. Most often you get a sheet of what the drug is, what the side effects might be, etc, etc. When you get handed one that is the equivalent to a short novel you get a bit skeptical. When you actually read it you get a little worried. When you Google it, you are ready to flush the drugs. When you start them, you wonder what you did. What is this devil drug?! Turns out what your doctor forgot to mention is that its a chemo drug. As in chemotherapy. Granted its in smaller doses than a cancer patient receives, but considering she is keeping you on the last chemo drug you were prescribed right along with this one, its a kick in the teeth nonetheless. Especially since you just finally got to the point where you can tolerate the side effects of the first one. A bad Jager hangover would be a welcome distraction. I want my unicorn back.
We get used to living with crippling nausea anyway. Most of us have several meds to combat it. We get used to the incapacitating joint pain, bone pain, muscle, nerve, and connective tissue pain. Again, we usually have a whole arsenal of meds for that too. We fight our way through the grueling fatigue and brain fog everyday just to shower. That's just our reality. We have a list of ugly symptoms as long as our arm, but we somehow manage to live with them. But then you start taking these meds and you feel worse than you did to begin with. That's cause as it turns out, they're really quite toxic. They tear down your immune system so you're open to any infection that's waiting for you. They make your hair fall out. They make you nauseated. They hurt your bones. They destroy your blood cells. You have to go for weekly blood tests when you first start some of them because they are just that hard on your organs. They make you sometimes wish for the flu....at least you'd feel better.
But, you stick with it. Not because you were told you have to, but because it just might be the light you so desperately need at the end of the long, dark tunnel. Hopefully this is what it takes. You grab the hope, because sometimes its all you've got. Sometimes you push through and eventually those side effects become less and less. The good starts to outweigh the bad, and you hear that unicorn galloping off in the distance. And, sometimes you just can't tolerate the meds and you move on to the next miracle. You realize that sometimes the treatments hurt as much as the sick, and that's just the way it is.
"Until you've travelled to that place you can't come back, where the last pain is gone and all that's left is black..."
..."And when you follow through and wind up on your back, looking up at no stars in the sky those white clouds have turned it black."
Then you fill that prescription. Most often you get a sheet of what the drug is, what the side effects might be, etc, etc. When you get handed one that is the equivalent to a short novel you get a bit skeptical. When you actually read it you get a little worried. When you Google it, you are ready to flush the drugs. When you start them, you wonder what you did. What is this devil drug?! Turns out what your doctor forgot to mention is that its a chemo drug. As in chemotherapy. Granted its in smaller doses than a cancer patient receives, but considering she is keeping you on the last chemo drug you were prescribed right along with this one, its a kick in the teeth nonetheless. Especially since you just finally got to the point where you can tolerate the side effects of the first one. A bad Jager hangover would be a welcome distraction. I want my unicorn back.
We get used to living with crippling nausea anyway. Most of us have several meds to combat it. We get used to the incapacitating joint pain, bone pain, muscle, nerve, and connective tissue pain. Again, we usually have a whole arsenal of meds for that too. We fight our way through the grueling fatigue and brain fog everyday just to shower. That's just our reality. We have a list of ugly symptoms as long as our arm, but we somehow manage to live with them. But then you start taking these meds and you feel worse than you did to begin with. That's cause as it turns out, they're really quite toxic. They tear down your immune system so you're open to any infection that's waiting for you. They make your hair fall out. They make you nauseated. They hurt your bones. They destroy your blood cells. You have to go for weekly blood tests when you first start some of them because they are just that hard on your organs. They make you sometimes wish for the flu....at least you'd feel better.
But, you stick with it. Not because you were told you have to, but because it just might be the light you so desperately need at the end of the long, dark tunnel. Hopefully this is what it takes. You grab the hope, because sometimes its all you've got. Sometimes you push through and eventually those side effects become less and less. The good starts to outweigh the bad, and you hear that unicorn galloping off in the distance. And, sometimes you just can't tolerate the meds and you move on to the next miracle. You realize that sometimes the treatments hurt as much as the sick, and that's just the way it is.
"Until you've travelled to that place you can't come back, where the last pain is gone and all that's left is black..."
..."And when you follow through and wind up on your back, looking up at no stars in the sky those white clouds have turned it black."
Black
Danger Mouse feat. Norah Jones
Danger Mouse feat. Norah Jones
Sunday, 27 April 2014
Think Positive......
....If I hear it one more time I might lose it. Think Positive.
OK, I get it. I'm pouring my heart out to you. It sounds like the world is ending. The girls have the stomach flu (and I'm NOT the vomit parent), I'm on heavy courses of steroids so I'm open to catch any little germ, including this one. Because of those steroids I've gained another 20 pounds...on top of the 15 I gained last course of high dose steroids (and so on). The flare those steroids are meant to control is only just starting to ease up a bit, the cat has to be taken to the vet for shots and to get "fixed" but is nowhere to be found, there is a class party that I'm required to provide 20 healthy treats for. Not only do I have to dip into my non existent energy pool to shop for the ingredients for these treats, I somehow have to find the money, somewhere it doesn't exist, to buy this stuff. That's what happens when you are relying on one income. We are only relying on one income because I am currently appealing my denial for disability. Oh yeah, that's happening next week.
I guess for your "average" well mom, this is just another multi tasking challenge. For the mom with Behcet's, or any Invisible Illness, this is the equivalent of a contestant trying to get to the end of a season of the TV show Survivor.
So, when you ask me how I am and this all spills out, I'm just hoping you will listen. Maybe give me a "that sucks". It's when I hear that I just have to "Think Positive", that I lose my stuff.
You see, I'm beyond that theory. Think positive was way back when there was a chance that this was just a transient illness. That this was just a collection of weird symptoms that will eventually go away, leaving me sitting back thinking "Well, that was weird. Glad that's over!". Its clear now though that that isn't happening for me. It's also clear that getting any help medication wise isn't simple either. One road block after another. One hospitalization to the next. This is my life, and darn it, its hard to think positive when you seriously feel like you might die before you actually get some solid medical help.
I know it's overwhelming when you ask how I am, and once in awhile I let the floodgates open. I mean, what do you say to all that? I get it.
It's not that I don't think positive. I do. Going into those high dose steroids that make me sweat like a trucker in the dead heat of summer, ride an emotional rollercoaster Six Flags couldn't challenge, and gain weight simply by looking at a glass of water, I HAVE to think of the positive that comes with it. Otherwise, I would end up crazy.....er. But I also think realistically, and know realistically how this disease acts.
So please, when you ask me how things are going, brace yourself for the truth. Just listen and be there, but please don't ever tell me to "Think Positive". That ship has sailed!!
OK, I get it. I'm pouring my heart out to you. It sounds like the world is ending. The girls have the stomach flu (and I'm NOT the vomit parent), I'm on heavy courses of steroids so I'm open to catch any little germ, including this one. Because of those steroids I've gained another 20 pounds...on top of the 15 I gained last course of high dose steroids (and so on). The flare those steroids are meant to control is only just starting to ease up a bit, the cat has to be taken to the vet for shots and to get "fixed" but is nowhere to be found, there is a class party that I'm required to provide 20 healthy treats for. Not only do I have to dip into my non existent energy pool to shop for the ingredients for these treats, I somehow have to find the money, somewhere it doesn't exist, to buy this stuff. That's what happens when you are relying on one income. We are only relying on one income because I am currently appealing my denial for disability. Oh yeah, that's happening next week.
I guess for your "average" well mom, this is just another multi tasking challenge. For the mom with Behcet's, or any Invisible Illness, this is the equivalent of a contestant trying to get to the end of a season of the TV show Survivor.
So, when you ask me how I am and this all spills out, I'm just hoping you will listen. Maybe give me a "that sucks". It's when I hear that I just have to "Think Positive", that I lose my stuff.
You see, I'm beyond that theory. Think positive was way back when there was a chance that this was just a transient illness. That this was just a collection of weird symptoms that will eventually go away, leaving me sitting back thinking "Well, that was weird. Glad that's over!". Its clear now though that that isn't happening for me. It's also clear that getting any help medication wise isn't simple either. One road block after another. One hospitalization to the next. This is my life, and darn it, its hard to think positive when you seriously feel like you might die before you actually get some solid medical help.
I know it's overwhelming when you ask how I am, and once in awhile I let the floodgates open. I mean, what do you say to all that? I get it.
It's not that I don't think positive. I do. Going into those high dose steroids that make me sweat like a trucker in the dead heat of summer, ride an emotional rollercoaster Six Flags couldn't challenge, and gain weight simply by looking at a glass of water, I HAVE to think of the positive that comes with it. Otherwise, I would end up crazy.....er. But I also think realistically, and know realistically how this disease acts.
So please, when you ask me how things are going, brace yourself for the truth. Just listen and be there, but please don't ever tell me to "Think Positive". That ship has sailed!!
Friday, 21 February 2014
The Guilty Sick Parent
Wouldn't it be nice that, in a perfect world no one would get sick. Or, at the very least you get excused because you have children to chase?
How do you tell your three year old she can't go outside today because Mommy hurts too much?
How do you tell your seven year old you will TRY to make it to her speech recital at school, but it all depends on how you feel when the time comes? Especially when you seem OK at the time?
How do you tell your fifteen year old that you can't be her "client" on client day in cosmetology class because its right at that time of day that is nearly impossible for you to stay awake, let alone drive to the school and participate?
I guess it's lucky for me that my three year old was born into a world where this is the norm.
It's lucky for me that that seven year old has watched her moms health steadily decline, been the big helper to dad when mom has been hospitalised, and she knows its for real.
It's luck for me that I have the worlds most easy going, understanding, caring fifteen year old. Not to mention the fact that she faces her own health battles.
Lucky me.
While I am indeed lucky that these sweet little girls are incredibly well versed on what "maybe" means, and they know plans can change at the drop of the hat, I do know that doesn't mean they aren't crushed that I can't take them to the park or even the back yard. I can't always attend the speech recital, or be their client on client day, even though I no longer work. And it crushes me to have to do that to them.
It's a cross we all bear as parents with illnesses. Those of us with "Invisible Illnesses" are often looked down upon by other parents (even teachers) who don't realise the fact that our children are at school clean, hair and teeth brushed, and lunch in tote, is often our greatest accomplishment of the day. Some days I think "Meh, I don't really care what anyone thinks"! Other days I find myself apologising for the fact that they don't have all four food groups in their lunches, and that their clothes are a bit wrinkly from sitting in the cold dryer - though they have been dry - for three days.
Often the guilt of not being the parents we truly wish we could be sometimes gnaws us to the bone, but we have to remember that we will always be our own toughest critic. Really, no one noticed the girls lunches were missing a protein, and they know my seven year old enough to know that the wrinkles in her clothes are just as likely from being hard at play on the playground before class. Though my girls face disappointment, they are still happy, beautiful girls. They smile and laugh often. I give them my 100% ALL the time, even if my 100% is someone strangers 40%. They are well loved, and they know it. THAT'S what matters.
How do you tell your three year old she can't go outside today because Mommy hurts too much?
How do you tell your seven year old you will TRY to make it to her speech recital at school, but it all depends on how you feel when the time comes? Especially when you seem OK at the time?
How do you tell your fifteen year old that you can't be her "client" on client day in cosmetology class because its right at that time of day that is nearly impossible for you to stay awake, let alone drive to the school and participate?
I guess it's lucky for me that my three year old was born into a world where this is the norm.
It's lucky for me that that seven year old has watched her moms health steadily decline, been the big helper to dad when mom has been hospitalised, and she knows its for real.
It's luck for me that I have the worlds most easy going, understanding, caring fifteen year old. Not to mention the fact that she faces her own health battles.
Lucky me.
While I am indeed lucky that these sweet little girls are incredibly well versed on what "maybe" means, and they know plans can change at the drop of the hat, I do know that doesn't mean they aren't crushed that I can't take them to the park or even the back yard. I can't always attend the speech recital, or be their client on client day, even though I no longer work. And it crushes me to have to do that to them.
It's a cross we all bear as parents with illnesses. Those of us with "Invisible Illnesses" are often looked down upon by other parents (even teachers) who don't realise the fact that our children are at school clean, hair and teeth brushed, and lunch in tote, is often our greatest accomplishment of the day. Some days I think "Meh, I don't really care what anyone thinks"! Other days I find myself apologising for the fact that they don't have all four food groups in their lunches, and that their clothes are a bit wrinkly from sitting in the cold dryer - though they have been dry - for three days.
Often the guilt of not being the parents we truly wish we could be sometimes gnaws us to the bone, but we have to remember that we will always be our own toughest critic. Really, no one noticed the girls lunches were missing a protein, and they know my seven year old enough to know that the wrinkles in her clothes are just as likely from being hard at play on the playground before class. Though my girls face disappointment, they are still happy, beautiful girls. They smile and laugh often. I give them my 100% ALL the time, even if my 100% is someone strangers 40%. They are well loved, and they know it. THAT'S what matters.
Saturday, 4 January 2014
The Journey to Diagnosis: What's Wrong With You?!
Almost anyone diagnosed with an autoimmune condition can tell you the road to diagnosis can be very long and difficult. We're talking YEARS. It's really quite mind boggling to those who don't know much about the process or medicine in general, that in this day and time of technology and medical advancements there is no one specific test for a lot of diseases out there. Even some of the diseases that do have specific tests can quite often test negative when in fact, the person truly suffers from the disease. Very often diagnosis is based on a checklist of symptoms over time, in addition to various diagnostic testing, over a period of several years. If you think its frustrating being the loved one of an ill person who suffers a disease that has yet to be named, try being the sick person.
This is the holding pattern I'm involved in as we speak. It's been five years since the first time Behcet's was suggested as a diagnosis. I've been misdiagnosed with two other diseases in the mean time (which apparently could still be an additional diagnosis), and its been just two months since my rheumatologist finally said he believes I have Behcet's disease, but he won't officially diagnose just yet. (For the record, both said rheumatologist and my internist told me it couldn't be Behcet's because I was "too white", and "your heritage doesn't support that diagnosis") It's been nearly my whole life I've been sick. I've been waiting on this diagnosis and its subsequent treatment for nearly as long. Finally, I have a diagnosis of sorts, and the beginning of a treatment plan.
The problem with having an invisible illness (which I'm learning most autoimmune diseases are), is that most of the time no one can tell by looking at you that inside, your body is waging a war on itself. That you are doing everything you can to smile while you FEEL that war happening inside. That you're smiling when you feel like you might be dying. They call them invisible illnesses because even though you could very well be next door to death, to anyone judging your health based on your physical appearance, you look normal, like anyone else. Not sickly. So, it goes without saying, that another problem we face is all the people in our lives who don't believe we are sick. I've had plenty of those in my time, and not all are just everyday people in your life. Doctors and other healthcare professionals too can be very judgemental. You know, because spending the day/night (sometimes both) in the ER, laying on the incredibly uncomfortable gurney in a drafty gown with your "sick" underwear peeking out, in the not so private (or quiet) too bright curtained cubicle, next to the serial projectile vomiter is my idea of a good time. They also throw in those party favors like catheters, nasogastric tube to vacuum air out of my gut, IV's (which incidentally never get started on the first shot with me. My record is 14 attempts before a successful IV was started on the top of my foot), monitors, and every form of irradiating test known to man. Now that's what I call fun, no wonder we "fake it"! Or the countless Doctor appointments you actually have to get dressed for (at least that's what they expect) which, because the Doctor has no idea what is really happening, usually results in a script for antibiotics and/or an anti inflammatory just as a consolation for actually dressing and getting out the door for said appointment. Or the frantic Doctors appointments you make when you really feel a flare starting, getting an appointment for the next day, and having to cancel BECAUSE YOU ARE TOO SICK TO GO TO THE DOCTOR. It happens, its true. I really do understand that it's hard for those people to really believe there is something wrong with you when all you have to offer after those hospital admissions, ER visits, and countless Doctors appointments is a firm idea of what is NOT wrong with you, and a few vague "maybe's". But whatever happened to simply relying on a persons word? Lucky for me, I have the support of the people in my life who really matter. That's what counts.
So, now the short story when asked "What's wrong with you?!", is Behcet's disease. A rare form of autoimmune vasculitis (5.2/100,000 people in the U.S. are effected). Curious? Well, you could Google it, but there's something else I've learned out of all this. Get ready, brace yourselves because this is a biggie......not everything you read on the internet is true!! And, if you do happen to find a reputable source of information (NOT Wikipedia or, as much as I love him, Dr. House), I can tell you right now that due to it's rarity, the descriptions you do find on BD (Behcet's Disease), are nowhere near as horrific as actually living with this ugly disease. There are so many symptoms we suffer that never make it into the disease description just because there are so many different symptoms and not all BD patients suffer the same. But you can get a loose idea. One of the sayings in vasculitis the community
is "Anywhere blood flows the disease can go". As for the name of my blog, I am very lucky **insert sarcasm here** to have the GI involvement sometimes seen in BD. So for me truly, "Behchet's Is The Shits".
This is the holding pattern I'm involved in as we speak. It's been five years since the first time Behcet's was suggested as a diagnosis. I've been misdiagnosed with two other diseases in the mean time (which apparently could still be an additional diagnosis), and its been just two months since my rheumatologist finally said he believes I have Behcet's disease, but he won't officially diagnose just yet. (For the record, both said rheumatologist and my internist told me it couldn't be Behcet's because I was "too white", and "your heritage doesn't support that diagnosis") It's been nearly my whole life I've been sick. I've been waiting on this diagnosis and its subsequent treatment for nearly as long. Finally, I have a diagnosis of sorts, and the beginning of a treatment plan.
The problem with having an invisible illness (which I'm learning most autoimmune diseases are), is that most of the time no one can tell by looking at you that inside, your body is waging a war on itself. That you are doing everything you can to smile while you FEEL that war happening inside. That you're smiling when you feel like you might be dying. They call them invisible illnesses because even though you could very well be next door to death, to anyone judging your health based on your physical appearance, you look normal, like anyone else. Not sickly. So, it goes without saying, that another problem we face is all the people in our lives who don't believe we are sick. I've had plenty of those in my time, and not all are just everyday people in your life. Doctors and other healthcare professionals too can be very judgemental. You know, because spending the day/night (sometimes both) in the ER, laying on the incredibly uncomfortable gurney in a drafty gown with your "sick" underwear peeking out, in the not so private (or quiet) too bright curtained cubicle, next to the serial projectile vomiter is my idea of a good time. They also throw in those party favors like catheters, nasogastric tube to vacuum air out of my gut, IV's (which incidentally never get started on the first shot with me. My record is 14 attempts before a successful IV was started on the top of my foot), monitors, and every form of irradiating test known to man. Now that's what I call fun, no wonder we "fake it"! Or the countless Doctor appointments you actually have to get dressed for (at least that's what they expect) which, because the Doctor has no idea what is really happening, usually results in a script for antibiotics and/or an anti inflammatory just as a consolation for actually dressing and getting out the door for said appointment. Or the frantic Doctors appointments you make when you really feel a flare starting, getting an appointment for the next day, and having to cancel BECAUSE YOU ARE TOO SICK TO GO TO THE DOCTOR. It happens, its true. I really do understand that it's hard for those people to really believe there is something wrong with you when all you have to offer after those hospital admissions, ER visits, and countless Doctors appointments is a firm idea of what is NOT wrong with you, and a few vague "maybe's". But whatever happened to simply relying on a persons word? Lucky for me, I have the support of the people in my life who really matter. That's what counts.
So, now the short story when asked "What's wrong with you?!", is Behcet's disease. A rare form of autoimmune vasculitis (5.2/100,000 people in the U.S. are effected). Curious? Well, you could Google it, but there's something else I've learned out of all this. Get ready, brace yourselves because this is a biggie......not everything you read on the internet is true!! And, if you do happen to find a reputable source of information (NOT Wikipedia or, as much as I love him, Dr. House), I can tell you right now that due to it's rarity, the descriptions you do find on BD (Behcet's Disease), are nowhere near as horrific as actually living with this ugly disease. There are so many symptoms we suffer that never make it into the disease description just because there are so many different symptoms and not all BD patients suffer the same. But you can get a loose idea. One of the sayings in vasculitis the community
is "Anywhere blood flows the disease can go". As for the name of my blog, I am very lucky **insert sarcasm here** to have the GI involvement sometimes seen in BD. So for me truly, "Behchet's Is The Shits".
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