I should have probably done this as my first post...
but it required me to write something completely new, while with the first two posts, all I had to do was copy and paste my older blogs from other web sights.
I guess I wanted to have things in chronological order so you (the reader) can understand how I got to where I am now, and understand the evolution of my thoughts...
Well... enough of my wind baggage...
Lets get to it....
I'm a 27 year old New Yorker, born and raised in Manhattan with the genetic mix almost as confusing as animal shelter mutt.....
I was conceived by two medical professionals, raised by one, and spent most of my youth hanging out or helping in the hospital after school. It's because of all the time I spent their talking to patients, staff, asking questions, and watching how hard my mother worked to bring some small bit of peace or comfort to her patients, that helped me developed a heighten, real world understanding of sickness, pain and the world of medicine.
I was also born with some health problems of my own, but what made me real "special" was my uncanny ability to catch almost every childhood sickness or find some unique klutzy way to injure myself.
I did this so often that my uncle was ready to buy me a child's hazmat suit and a football helmet....
Through each one of these different experiences/incidents I learned not only how to handle pain (our family mantra was "walk if off"...lol) but how to understand my own body. I started to be able to tell when I was about to get sick and forestall it. I could even tell when something wasn't right and I needed to see a doctor (because of this I was able to catch two very debilitating diseases early enough to be treated), but unfortunately there was nothing I could do about being a klutz except to walk slower and avoid heals which isn't easy when your a whopping 5 feet even...
My uncle to this day still threatens to buy me a helmet...
Growing up I never feared sickness or pain because I learned how to handle both. In fact I was proud of my ability to handle pain and as I grew more accustomed to my body's signals, doctors visits grew less frequent. Then everything changed.....
I have been living with this sickness for over a year and a half now which is nothing in comparison to the 4 to 5 years the average person has to wait for diagnoses.
Life has changed dramatically for me since the pain started, but not all the changes have been bad. I've learned a lot about myself during these difficult times, and even more about those around me. I share my journey in the hopes that what I'm going through can help someone else who is also struggling.
Let me clearly state that I have Not been officially diagnosed with Fibromyalgia.
All my symptoms match the disorder but the one or two doctors who believe this is what I'm suffering from don't know enough about the disorder to officially diagnose me.
My hope is that if I'm proactive enough with my health care, push for doctors to take me seriously, but allow then to come to there own conclusions, I can find some answers and get diagnosed. That way I can try to enjoy some remaining aspect of my youth.
My next post will be about how it all started, what I've been through, and where I am now....
Thursday, June 11, 2009
Wednesday, June 10, 2009
"F-Word Rant on a Roll with Mustard on the Side" Written Saturday, November 15, 2008
In this blog/rant I had what's commonly called an "emotional outburst" after a friend asked me about a recent doctors visit.
In my family, my rants are called "Fuck Rants" because I have the tendency to use that key word to an obscene amount. Especially if I'm already emotionally aggravated.
It was left on her page as a very long comment and I turned it into a blog.
How things evolve...
-------------------------------------------------------------------------------
"Wait and see"....
That's all they keep saying..... wait and see.
Like my fucking pain is going to magically disappear.
I understand them not wanting to diagnose me if they don't know what the cause is, but at least they could have helped me with the pain earlier.
Only a few days ago my doc finally saw how bad off I was and prescribed me something to help with the pain.
8 fucking months of me saying "Hay...Um don't mean to bug ya but I'm in a fuck lode of pain". But now when they can actually see me barely able to hobble into there damn office is when they do something about it.
Fuck Um!!!!!
Oh... and the cherry on this Shit cake is that the pain pills they prescribed are usually given to people that suffer from Fibromyalgia. The same fucking thing I was sure I was suffering from 6 months ago but that the docs are only figuring out now.
I fucking found it on the web for fuck sake!!!!
I went to a respected medical web sight, put in my symptoms and POOF there it was.
Don't they have the Internet!!!!
Even if it's not the exact diagnosis, it could lead them in the right direction. Fuck!! It could lead them in any direction instead of having me just sit here in pain.
Maybe then I wouldn't have had to wait 8 months for someone to give me these pills, or to set up a freaking MRI.
Maybe then I wouldn't have had to be tortured with the constant pain and lack of sleep, unable to even leave my home or be held cause of the pain it would cause.
I was being bounced back and forth from doctor to doctor like a helpless ball in a pin ball machine.
Yet they're still waiting to see what happens.........
I'll give ya a quote from a movie:
"Well, honey, doctors are sadists who like to play God and watch lesser people scream..."
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Added note:
In the 8 months that I have been suffering, each doctor has only drawn bloods for tests. I've seen 4 different doctors, have had enough blood drawn from me to create an army of 5 foot clones, but to no result. Though I clearly stated to all of them that the pain was severe and that it started in the back of my head and neck, down my spine, then spread to the rest of my body, only now are they sending me for and MRI and a EMG.
On a more positive side, the pills are beginning to help with the pain which gives me hope that this is the right course and that's why I even have the energy to bitch....lol.....=)
In my family, my rants are called "Fuck Rants" because I have the tendency to use that key word to an obscene amount. Especially if I'm already emotionally aggravated.
It was left on her page as a very long comment and I turned it into a blog.
How things evolve...
-------------------------------------------------------------------------------
"Wait and see"....
That's all they keep saying..... wait and see.
Like my fucking pain is going to magically disappear.
I understand them not wanting to diagnose me if they don't know what the cause is, but at least they could have helped me with the pain earlier.
Only a few days ago my doc finally saw how bad off I was and prescribed me something to help with the pain.
8 fucking months of me saying "Hay...Um don't mean to bug ya but I'm in a fuck lode of pain". But now when they can actually see me barely able to hobble into there damn office is when they do something about it.
Fuck Um!!!!!
Oh... and the cherry on this Shit cake is that the pain pills they prescribed are usually given to people that suffer from Fibromyalgia. The same fucking thing I was sure I was suffering from 6 months ago but that the docs are only figuring out now.
I fucking found it on the web for fuck sake!!!!
I went to a respected medical web sight, put in my symptoms and POOF there it was.
Don't they have the Internet!!!!
Even if it's not the exact diagnosis, it could lead them in the right direction. Fuck!! It could lead them in any direction instead of having me just sit here in pain.
Maybe then I wouldn't have had to wait 8 months for someone to give me these pills, or to set up a freaking MRI.
Maybe then I wouldn't have had to be tortured with the constant pain and lack of sleep, unable to even leave my home or be held cause of the pain it would cause.
I was being bounced back and forth from doctor to doctor like a helpless ball in a pin ball machine.
Yet they're still waiting to see what happens.........
I'll give ya a quote from a movie:
"Well, honey, doctors are sadists who like to play God and watch lesser people scream..."
-------------------------------------------------------------------------------
Added note:
In the 8 months that I have been suffering, each doctor has only drawn bloods for tests. I've seen 4 different doctors, have had enough blood drawn from me to create an army of 5 foot clones, but to no result. Though I clearly stated to all of them that the pain was severe and that it started in the back of my head and neck, down my spine, then spread to the rest of my body, only now are they sending me for and MRI and a EMG.
On a more positive side, the pills are beginning to help with the pain which gives me hope that this is the right course and that's why I even have the energy to bitch....lol.....=)
"Shadow" The First blog I ever wrote about what I was going through. Written Wednesday, September 03, 2008
I'm clear for the moment but I don't know how long it will last and don't know what to write......
My mind is being affected by whatever it is that is causing me all this pain (the doctors still don't know what it is). I'm not as clear as I used to be. It's like being trapped inside your own body. The person you used to be is there inside this pain racked flesh and try's to speak out of my mouth but can't because of malfunctioning misfiring synapses, thoughts freezing like an out of date computer while I'm in mid sentence. I'd try to describe it further but I'm loosing my words even now.
I try to laugh about it....seeing how I'm now on equal footing with my aunts and uncles....all of us trying to remember what something is called, sitting in silence until we all look at each others silent faces and start laughing, but part of me feels their worries through side glances and forced smiles.
I feel lost, isolated from my friends.
Most don't understand, and I can't explain it any better then I have. It's something you have to experience. Some are annoyed...cause I can't hang out, or cause I don't call. They don't understand that I don't have a choice.
I don't call cause the words aren't really mine....
I don't hang because I'm not really there.....
They belong to this shadow, echo, the one who can't spell, who stops speaking in mid sentence cause she can't find the right word, the one who can't walk up a flight of steps without the pain making her knees give way or the one who can't be hugged hard cause the pain will linger for hours.
I don't want them to see that cause if they do then it becomes real. I can take the worried glances from family but I don't think I can take it from my friends.
So I fake it....
I try to walk without a limp though it hurts more, I make jokes when I incorrectly say a word or forget one, I smile and I don't talk about it....all so they don't see my shadow........
My mind is being affected by whatever it is that is causing me all this pain (the doctors still don't know what it is). I'm not as clear as I used to be. It's like being trapped inside your own body. The person you used to be is there inside this pain racked flesh and try's to speak out of my mouth but can't because of malfunctioning misfiring synapses, thoughts freezing like an out of date computer while I'm in mid sentence. I'd try to describe it further but I'm loosing my words even now.
I try to laugh about it....seeing how I'm now on equal footing with my aunts and uncles....all of us trying to remember what something is called, sitting in silence until we all look at each others silent faces and start laughing, but part of me feels their worries through side glances and forced smiles.
I feel lost, isolated from my friends.
Most don't understand, and I can't explain it any better then I have. It's something you have to experience. Some are annoyed...cause I can't hang out, or cause I don't call. They don't understand that I don't have a choice.
I don't call cause the words aren't really mine....
I don't hang because I'm not really there.....
They belong to this shadow, echo, the one who can't spell, who stops speaking in mid sentence cause she can't find the right word, the one who can't walk up a flight of steps without the pain making her knees give way or the one who can't be hugged hard cause the pain will linger for hours.
I don't want them to see that cause if they do then it becomes real. I can take the worried glances from family but I don't think I can take it from my friends.
So I fake it....
I try to walk without a limp though it hurts more, I make jokes when I incorrectly say a word or forget one, I smile and I don't talk about it....all so they don't see my shadow........
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