....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!!
Sunday, 27 April 2014
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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