So yesterday, today, and tomorrow, I have/had to go for steroid infusions. This is so Doctor C can taper me down on the prednisone and attempt to get me off of it, while hopefully buying me some feel good time before the cellcept kicks in, in a couple of months.
It has been an interesting experience, to say the least. But I guess a small price to pay if it will make me feel halfway human again.
My normal dose of prednisone was up to 20mg a day and the steroid infusions are 500mg a day.
Needless, to say, they pack a punch. Hot and cold flashes while your getting them. And when you’re hot, you’re hot. Today my face was so red, it looked like I had worked out for about 3 hours.
Stomach cramps, jitteriness, increased heartbeat, insomnia, a really bitter taste in your mouth…
Again, I guess not such bad things if I can finally get on with my life (at least until the next flare).
Tuesday, April 29, 2008
Silence Isn't Always Golden
Why is it that we are supposed to trust doctors, who have a high level of intelligence, and yet, we know that Lupus is so often misdiagnosed? Knowing this, why don’t doctors make a greater effort to diagnose it?
So many people suffer, often in silence. I know that for me, once you are told that you may be crazy, that the symptoms are all in your head, you start to believe it.
I’ve decided that I will no longer remain silent. We are silenced by our pain. We are silenced by our depression. But I refuse to keep quiet!
And hopefully this blog is the beginning to having my voice and my story heard…
So many people suffer, often in silence. I know that for me, once you are told that you may be crazy, that the symptoms are all in your head, you start to believe it.
I’ve decided that I will no longer remain silent. We are silenced by our pain. We are silenced by our depression. But I refuse to keep quiet!
And hopefully this blog is the beginning to having my voice and my story heard…
Honesty
Throughout this experience, the one thing I’ve truly desired from all parties involved is honesty and the truth.
Doctor B filled me with a lot of false hope. Everything I was told I didn’t have, and felt relief about not having, I am now finding out from Doctor C that I do have.
I don’t really know how my friends feel about all this. And honestly, even if they don’t care, I’d like them to just come out and tell me, so I can know where I stand.
Clearly, when my body is battling itself, I don’t even know where I stand with myself most of the time.
But ultimately, I need a support system that is honestly, truly going to be supportive.
Doctor B filled me with a lot of false hope. Everything I was told I didn’t have, and felt relief about not having, I am now finding out from Doctor C that I do have.
I don’t really know how my friends feel about all this. And honestly, even if they don’t care, I’d like them to just come out and tell me, so I can know where I stand.
Clearly, when my body is battling itself, I don’t even know where I stand with myself most of the time.
But ultimately, I need a support system that is honestly, truly going to be supportive.
Looking Back
I’ve decided as of late that one thing that will not help me move forward is looking back. Once I’ve made a decision about directions to go with treatment and medication, I can’t second-guess it or later wonder if I made the right decision.
Similarly, Lupus manifests itself in very complex ways. Episodes that seemed simple may have been early signs that my immune system was starting to spin out of control.
Doctors don’t want you to go to them every time you have a stomachache or sore throat – that would bring to a halt an already bogged down medical system. However, when you’re diagnosed with an autoimmune illness, doctors think that you should have seen the warning signs.
Small things, that maybe I didn’t even go to the doctor for, taken one their own, seemed like nothing. But when they all hit at once and my whole world came crashing down in front of me, it became painfully obvious that something was very, very wrong.
Although it’s hard for me to admit to myself that I’m not to blame for this, this is not my fault.
Other than realizing that something was wrong with my body and not stopping until I found a doctor that would listen to me (which wasn’t nearly as easy as it sounds), I have to believe that there is nothing more I could have done.
Similarly, Lupus manifests itself in very complex ways. Episodes that seemed simple may have been early signs that my immune system was starting to spin out of control.
Doctors don’t want you to go to them every time you have a stomachache or sore throat – that would bring to a halt an already bogged down medical system. However, when you’re diagnosed with an autoimmune illness, doctors think that you should have seen the warning signs.
Small things, that maybe I didn’t even go to the doctor for, taken one their own, seemed like nothing. But when they all hit at once and my whole world came crashing down in front of me, it became painfully obvious that something was very, very wrong.
Although it’s hard for me to admit to myself that I’m not to blame for this, this is not my fault.
Other than realizing that something was wrong with my body and not stopping until I found a doctor that would listen to me (which wasn’t nearly as easy as it sounds), I have to believe that there is nothing more I could have done.
Accepting Responsibility
So, I’ve started to realize that my somewhat strained relationship with Doctor C is partly my fault. While that’s not to say that at times, Doctor C has a less than friendly personality, I think that in some ways, I’ve been expecting too much.
I think I’ve been resenting the fact that Doctor C can’t answer, what is to me, still the most important question.
Why?
Why is this happening to me?
Not only can Doctor C not answer those questions, but no one can.
Sure, there are medical answers, like my immune system has decided to go haywire on itself.
But the philosophical reasons, the core as to why this is happening to me at this point in my life, no one has the ability to answer.
I think I’ve been angry that his is happening at all, and Doctor C seemed like the most logical person on which to place the blame, which is completely unfair. It seemed logical at the time, but now I realize that Doctor C was really the one to jumpstart treatment and really tried to make an effort to work on making me feel better.
I think I’ve been resenting the fact that Doctor C can’t answer, what is to me, still the most important question.
Why?
Why is this happening to me?
Not only can Doctor C not answer those questions, but no one can.
Sure, there are medical answers, like my immune system has decided to go haywire on itself.
But the philosophical reasons, the core as to why this is happening to me at this point in my life, no one has the ability to answer.
I think I’ve been angry that his is happening at all, and Doctor C seemed like the most logical person on which to place the blame, which is completely unfair. It seemed logical at the time, but now I realize that Doctor C was really the one to jumpstart treatment and really tried to make an effort to work on making me feel better.
Sunday, April 27, 2008
"Shopaholic" Series
While this may not interest my more “serious” readers, I’ve become addicted to the "Shopaholic" book series by Sophie Kinsella.
Honestly, I need something to break up the monotony of graduate school and all of the autoimmune illness reading I’ve been doing. Don’t get me wrong, I wouldn’t be doing it if I didn’t want to, but life also requires something on the lighter side, as well. And this has fit the bill perfectly.
Honestly, I need something to break up the monotony of graduate school and all of the autoimmune illness reading I’ve been doing. Don’t get me wrong, I wouldn’t be doing it if I didn’t want to, but life also requires something on the lighter side, as well. And this has fit the bill perfectly.
I’ve read the first three books in the series, “Confessions of a Shopaholic,” “Shopaholic Takes Manhattan,” and “Shopaholic Ties the Knot,” and I’m planning on buying the latest two!
Saturday, April 26, 2008
"Double Life"
Clark Kent
Superman
Dorky
Sex Fiend
Glasses
Short Skirt
Stupid jokes on the fly
Holds the drink just to look cool
Skinny
Fat
Mirror image
Same person
But Different
Superman
Dorky
Sex Fiend
Glasses
Short Skirt
Stupid jokes on the fly
Holds the drink just to look cool
Skinny
Fat
Mirror image
Same person
But Different
Everything Is Temporary
Life.
Time.
The way I feel. Tomorrow I might feel far better or worse than I do today.
Being young, healthy, and spry.
Some people get to live with these ephemeral notions for longer than others.
Me, I’ve got a disease that’s causing my body to attack itself. That’s unfortunately not temporary.
A lot of people have called me “an old soul.”
Maybe this just proves it…
I’ve never been the most optimistic person in the world…
Clearly that is evidenced here.
Time.
The way I feel. Tomorrow I might feel far better or worse than I do today.
Being young, healthy, and spry.
Some people get to live with these ephemeral notions for longer than others.
Me, I’ve got a disease that’s causing my body to attack itself. That’s unfortunately not temporary.
A lot of people have called me “an old soul.”
Maybe this just proves it…
I’ve never been the most optimistic person in the world…
Clearly that is evidenced here.
Further Thoughts On Organization
Especially with my lapses in memory and poor concentration (from both the illness and the medication), being an already organized person has helped immensely.
And that's not to say that there haven't been people who just think I'm completely dumb and not together. But for those who knew me "before," they know that's not the kind of person I am.
There are days when I really don’t know up from down, so anything I can do to keep things routine, is extremely helpful.
I bought this awesome pill holder that has a slot for each day of the week, and each day has 4 compartments – morning, noon, evening, and bed. Each day is detachable, and the entire unit is wall mountable.
From what I’ve read, the amount of medication I’m on is baby stuff compared to other Lupus patients. I only have 10 pills a day to keep track of right now; some people have 30.
I never thought that a pill holder would be something to brag about, but as I’ve said before, a situation like this really puts thing in perspective.
And that's not to say that there haven't been people who just think I'm completely dumb and not together. But for those who knew me "before," they know that's not the kind of person I am.
There are days when I really don’t know up from down, so anything I can do to keep things routine, is extremely helpful.
I bought this awesome pill holder that has a slot for each day of the week, and each day has 4 compartments – morning, noon, evening, and bed. Each day is detachable, and the entire unit is wall mountable.
From what I’ve read, the amount of medication I’m on is baby stuff compared to other Lupus patients. I only have 10 pills a day to keep track of right now; some people have 30.
I never thought that a pill holder would be something to brag about, but as I’ve said before, a situation like this really puts thing in perspective.
Ethnography/ Creative Writing
I walk through the hospital, an already sterile, cold, uninviting environment. I see the glances I receive from people as I pass.
She’s so young…
What’s wrong with her?
The gauze around my arm covering the fresh wound from where blood has been drawn, the only signal that something is remotely wrong.
Otherwise I look perfectly healthy.
And this experience makes me come full circle. I want to drop to the floor and cry, right there.
But how do you express emotion inside these disconsolate walls?
And if you do, will it matter to anyone?
She’s so young…
What’s wrong with her?
The gauze around my arm covering the fresh wound from where blood has been drawn, the only signal that something is remotely wrong.
Otherwise I look perfectly healthy.
And this experience makes me come full circle. I want to drop to the floor and cry, right there.
But how do you express emotion inside these disconsolate walls?
And if you do, will it matter to anyone?
Friday, April 25, 2008
Poetry
“Contradictions”:
Will you recognize me when the day is done, when the journey is over?
Will you be able to see beyond what time has done to my face?
Will you remember the person that I once was and will you want to know the person I’ve become?
Time heals all wounds, but makes us strangers to ourselves
We climb mountains and stumble on solid ground
We think we’re immortal and yet a tiny part of us dies everyday
Life is full of contradictions, things that we believe even though they don’t make sense
I’ve been becoming more and more introspective lately and I’ve been writing a fair amount of poetry. I don’t know if you could call it good, but I figured I would start posting some of it on here.
I guess I’ve been realizing, as is evidenced by the title of my blog, that life is full of contradictions. And I guess it’s not so much what we do with the contradictions, but how we react to them – whether we laugh or cry, fight or flight, etc., etc.
Will you recognize me when the day is done, when the journey is over?
Will you be able to see beyond what time has done to my face?
Will you remember the person that I once was and will you want to know the person I’ve become?
Time heals all wounds, but makes us strangers to ourselves
We climb mountains and stumble on solid ground
We think we’re immortal and yet a tiny part of us dies everyday
Life is full of contradictions, things that we believe even though they don’t make sense
I’ve been becoming more and more introspective lately and I’ve been writing a fair amount of poetry. I don’t know if you could call it good, but I figured I would start posting some of it on here.
I guess I’ve been realizing, as is evidenced by the title of my blog, that life is full of contradictions. And I guess it’s not so much what we do with the contradictions, but how we react to them – whether we laugh or cry, fight or flight, etc., etc.
Blood
I had 5 tubes of blood drawn today. Two to check my blood count levels because of the cellcept and three because it would appear that Doctor C is thinking that I may have some other syndromes overlapping with the Rheumatoid Arthritis and Lupus.
Looking at the lab sheets was certainly a fun way to find out!
After having 27 tubes taken at one time after my first appointment with Doctor C, 5 seems like nothing. But it’s nothing to sneeze at. Truthfully, I’m feeling physically and mentally exhausted.
Maybe I’ll start keeping a monthly tally of how many tubes of blood I have taken.
Looking at the lab sheets was certainly a fun way to find out!
After having 27 tubes taken at one time after my first appointment with Doctor C, 5 seems like nothing. But it’s nothing to sneeze at. Truthfully, I’m feeling physically and mentally exhausted.
Maybe I’ll start keeping a monthly tally of how many tubes of blood I have taken.
Another New Symptom
Nosebleeds!!!
After having two in the past week, I suspected that maybe this was from the cellcept, because the nosebleeds started just after I began taking it. But I e-mailed Doctor C this morning and was told that Doctor C never heard of nosebleeds when on cellcept, but is concerned that this could signal more problems with my immune system.
Isn’t that just the best news you’ve ever heard?
And this comes on the heels of numbness, tingling, and burning in my hands and face.
When am I going to catch a break?
After having two in the past week, I suspected that maybe this was from the cellcept, because the nosebleeds started just after I began taking it. But I e-mailed Doctor C this morning and was told that Doctor C never heard of nosebleeds when on cellcept, but is concerned that this could signal more problems with my immune system.
Isn’t that just the best news you’ve ever heard?
And this comes on the heels of numbness, tingling, and burning in my hands and face.
When am I going to catch a break?
Thursday, April 24, 2008
"Unwritten"
“Unwritten” by Natasha Bedingfield:
“I am unwritten, can't read my mind, I'm undefined
I'm just beginning, the pen's in my hand, ending unplanned
Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words that you could not find
Reaching for something in the distance
So close you can almost taste it
Release your innovations
Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten
Oh, oh, oh
I break tradition, sometimes my tries, are outside the lines
We've been conditioned to not make mistakes, but I can't live that way
Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words that you could not find
Reaching for something in the distance
So close you can almost taste it
Release your inner visions
Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspokenLive your life with arms wide open
Today is where your book begins
The rest is still unwritten
Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words that you could not find
Reaching for something in the distance
So close you can almost taste it
Release your inner visions
Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten
The rest is still unwritten
The rest is still unwritten
Oh, yeah, yeah”
From the album, “Unwritten”
“I am unwritten, can't read my mind, I'm undefined
I'm just beginning, the pen's in my hand, ending unplanned
Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words that you could not find
Reaching for something in the distance
So close you can almost taste it
Release your innovations
Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten
Oh, oh, oh
I break tradition, sometimes my tries, are outside the lines
We've been conditioned to not make mistakes, but I can't live that way
Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words that you could not find
Reaching for something in the distance
So close you can almost taste it
Release your inner visions
Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspokenLive your life with arms wide open
Today is where your book begins
The rest is still unwritten
Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words that you could not find
Reaching for something in the distance
So close you can almost taste it
Release your inner visions
Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten
The rest is still unwritten
The rest is still unwritten
Oh, yeah, yeah”
From the album, “Unwritten”
Organizing and Cleaning
One thing that has always helped me stay grounded, even during the most stressful times of my life, is being organized (sometimes to a fault).
I recently upgraded all of my medical papers from a folder to a three-ring binder, fully equipped with dividers and page protectors. Everything is organized by type of document and doctor, and it’s much easier to find things than it was when they were haphazardly strewn into a folder that was busting at the seams.
I think part of my reluctance to actually get this stuff into some semblance of order was another part of my denying that it is actually happening. But I realized that what I need for myself is to keep my life as together as possible, even though I often feel like I am completely losing ground.
The only thing about organizing and cleaning is that it is something that you have to have the energy to do, and there hasn’t been a fertile supply of that lately. And if there is, it comes in random spurts. So, I do what I can, when I can…
And for better or worse, I am accumulating quite a collection of medical documents.
Maybe one day I’ll paper the walls with them. Then again, maybe not…
I recently upgraded all of my medical papers from a folder to a three-ring binder, fully equipped with dividers and page protectors. Everything is organized by type of document and doctor, and it’s much easier to find things than it was when they were haphazardly strewn into a folder that was busting at the seams.
I think part of my reluctance to actually get this stuff into some semblance of order was another part of my denying that it is actually happening. But I realized that what I need for myself is to keep my life as together as possible, even though I often feel like I am completely losing ground.
The only thing about organizing and cleaning is that it is something that you have to have the energy to do, and there hasn’t been a fertile supply of that lately. And if there is, it comes in random spurts. So, I do what I can, when I can…
And for better or worse, I am accumulating quite a collection of medical documents.
Maybe one day I’ll paper the walls with them. Then again, maybe not…
Comments, Please!
So, this blog has been up for about a week now and I’m curious to know what people think, assuming that there are people out there who are reading it…
Coping
One way that I’ve dealt with this has been by developing a rather wry sense of humor, which hasn’t really been appreciated by my doctors.
The last time I saw Doctor C and it was suggested that I go on cellcept, I was told that basically the medication would cause my T-cells to commit suicide. So I told Doctor C that it was either them or me, and I would rather have my T-cells be the ones to commit suicide than myself.
You know, the doctors get squeamish when I cry; they don’t like it when I laugh. I’m doing the best I can. I’m learning how to deal. Maybe they should to…
The last time I saw Doctor C and it was suggested that I go on cellcept, I was told that basically the medication would cause my T-cells to commit suicide. So I told Doctor C that it was either them or me, and I would rather have my T-cells be the ones to commit suicide than myself.
You know, the doctors get squeamish when I cry; they don’t like it when I laugh. I’m doing the best I can. I’m learning how to deal. Maybe they should to…
Bad Dream
I wonder at what point I will stop thinking that I am going to wake up and discover that all of this was just a bad dream.
I know that things could always be worse, however, this is something that is going to be with me forever.
It will always be a ball-and-chain dragging behind me, an elephant in the room that I want to silence and scream about at the same time.
It will always be there, no matter how hard I try to shake it.
I know that things could always be worse, however, this is something that is going to be with me forever.
It will always be a ball-and-chain dragging behind me, an elephant in the room that I want to silence and scream about at the same time.
It will always be there, no matter how hard I try to shake it.
"The First Year" Series
Several months ago I read, “A Patient-Expert Walks You Through Everything You Need to Learn and Do – The First Year – Rheumatoid Arthritis – An Essential Guide for the Newly Diagnosed” by M.E.A. McNeil.
Now I’m reading a book from the same series about Lupus, called, “A Patient-Expert Walks You Through Everything You Need to Learn and Do – The First Year – Lupus – An Essential Guide for the Newly Diagnosed” by Nancy C. Hanger.
The book on RA was extremely helpful and I assume that the Lupus one will be, as well. Many other illnesses and diseases are covered in this series and I would highly recommend them if you are going through your own health crisis.
These books are supposed to guide you through the first year, once you are diagnosed, but I read the RA one in about a week.
*****
(McNeil, M.E.A., and Kenneth Sack. The First Year - Rheumatoid-Arthritis: And Essential Guide to the Newly Diagnosed. New York: Marlowe & Company, 2005.)
(Hanger, Nancy C. The First Year - Lupus: An Essential Guide to the Newly Diagnosed. New York: Marlowe & Company, 2003.)
Now I’m reading a book from the same series about Lupus, called, “A Patient-Expert Walks You Through Everything You Need to Learn and Do – The First Year – Lupus – An Essential Guide for the Newly Diagnosed” by Nancy C. Hanger.
The book on RA was extremely helpful and I assume that the Lupus one will be, as well. Many other illnesses and diseases are covered in this series and I would highly recommend them if you are going through your own health crisis.
These books are supposed to guide you through the first year, once you are diagnosed, but I read the RA one in about a week.
*****
(McNeil, M.E.A., and Kenneth Sack. The First Year - Rheumatoid-Arthritis: And Essential Guide to the Newly Diagnosed. New York: Marlowe & Company, 2005.)
(Hanger, Nancy C. The First Year - Lupus: An Essential Guide to the Newly Diagnosed. New York: Marlowe & Company, 2003.)
Wednesday, April 23, 2008
"Coping With Prednisone"
If you or anyone you know is going to be on prednisone or a similar steroid treatment for any length of time, you must read, “Coping With Prednisone” by Eugenia Zukerman and Julie R. Ingelfinger, M.D.
Steroids can do crazy things to your body and this book really made me feel empowered. I was scared to read it at first, but it helped me realize that the side-effects I was having that made me think I was going nuts, were totally normal when being on prednisone.
While I don’t wish anything like this on anybody, it is comforting to know that there are other people in the world who have been through similar experiences in their lives and survived and even thrived, as a result.
*****
(Zukerman, Eugenia, and Julie R. Ingelfiger. Coping With Prednisone. New York: St. Martin's Griffin, 2007)
Steroids can do crazy things to your body and this book really made me feel empowered. I was scared to read it at first, but it helped me realize that the side-effects I was having that made me think I was going nuts, were totally normal when being on prednisone.
While I don’t wish anything like this on anybody, it is comforting to know that there are other people in the world who have been through similar experiences in their lives and survived and even thrived, as a result.
*****
(Zukerman, Eugenia, and Julie R. Ingelfiger. Coping With Prednisone. New York: St. Martin's Griffin, 2007)
The Hardest Part
The hardest part of all of this hasn’t been feeling bad. Well, it hasn’t been easy. But the hardest part has truly been dealing with the ups and downs. It’s not even that I have good days and bad days, but rather, good hours and bad hours. One minute my arms and legs are working perfectly and the next they might as well be alien parts that I’ve never used before. One minute I can be filled with energy and exuberance and the next I can be filled with insurmountable fatigue and exhaustion. Doctor C tells me that the fatigue is the hardest symptom to treat in autoimmune diseases.
In some ways, I feel like I am a slave to my body. While before I could push and push and push, until finally with a stunning blow my body pushed back, now I am forced to actually listen from the start.
In some ways, I feel like I am a slave to my body. While before I could push and push and push, until finally with a stunning blow my body pushed back, now I am forced to actually listen from the start.
"One More Day"
“One More Day” by Sinead O’Connor:
“My love more dear than this life you are to me
Your kiss more clear than the crystal of the sea
Please save me I’m fallen hereI'm lost and alone
An angel weeps
I hear him cry
A lonely prayer
A voice so high
Dry all your tears
Come what may
And in the end the sun will rise
On one more day
Hey
(Gaelic part)
Dry all your tears
Come what may
And in the end the sun will rise
On one more day
Hey
The sun will rise on one more day”
From the soundtrack of the movie, “Veronica Guerin”
“My love more dear than this life you are to me
Your kiss more clear than the crystal of the sea
Please save me I’m fallen hereI'm lost and alone
An angel weeps
I hear him cry
A lonely prayer
A voice so high
Dry all your tears
Come what may
And in the end the sun will rise
On one more day
Hey
(Gaelic part)
Dry all your tears
Come what may
And in the end the sun will rise
On one more day
Hey
The sun will rise on one more day”
From the soundtrack of the movie, “Veronica Guerin”
Asking For Help
I think there comes a time in everyone’s life when they have an Oh, Crap! Moment. It’s a moment when you question everything and realize that you know nothing about yourself.
And I realized that in a time of crisis, I had no idea who I was. What kind of person am I? How am I going to react? How am I going to fare in the face of adversity? Who will stay with me through it all and who will run in the other direction? How will I feel about those people?
But most importantly, what do I need to get through it.
It’s ironic when you consider yourself to be a person who doesn’t need others and then you end up in a situation where you realize your entire life might be defined by needing people.
Will you be there to catch me when I fall?
Can I call you at three a.m.?
And maybe it sounds selfish, but if the answer to those two questions is no, then these people really do not deserve to be your friends.
I’ve realized that I have to surround myself by positive, encouraging people, not people whose only goal is to bring me down. There are days when I’m feeling bad enough as it is, I don’t need other people’s negative energy as well as my own. Believe me, there are days when I have plenty to go around!
I’ve never really been one to ask for help or feel the need to depend on people. But all of this has made me realize that sometimes we can’t go it alone and we need other people to see us through. This doesn’t make me less of a person. It makes me human.
And at the end of the day, if that need for help is met with questioning glances and unconcerned responses, well, pick up and move on, you’re not the problem in that relationship.
And I realized that in a time of crisis, I had no idea who I was. What kind of person am I? How am I going to react? How am I going to fare in the face of adversity? Who will stay with me through it all and who will run in the other direction? How will I feel about those people?
But most importantly, what do I need to get through it.
It’s ironic when you consider yourself to be a person who doesn’t need others and then you end up in a situation where you realize your entire life might be defined by needing people.
Will you be there to catch me when I fall?
Can I call you at three a.m.?
And maybe it sounds selfish, but if the answer to those two questions is no, then these people really do not deserve to be your friends.
I’ve realized that I have to surround myself by positive, encouraging people, not people whose only goal is to bring me down. There are days when I’m feeling bad enough as it is, I don’t need other people’s negative energy as well as my own. Believe me, there are days when I have plenty to go around!
I’ve never really been one to ask for help or feel the need to depend on people. But all of this has made me realize that sometimes we can’t go it alone and we need other people to see us through. This doesn’t make me less of a person. It makes me human.
And at the end of the day, if that need for help is met with questioning glances and unconcerned responses, well, pick up and move on, you’re not the problem in that relationship.
Tuesday, April 22, 2008
My Mantra
This goes along with the “Everyone’s a Doctor” post.
I’ve tried to live with the mantra, “Just because I feel like crap, doesn’t mean I have to look like crap while doing it.”
The prednisone has made this incredibly hard. It’s hard to feel good physically when your self-esteem has been totally crushed.
I’ve tried to live with the mantra, “Just because I feel like crap, doesn’t mean I have to look like crap while doing it.”
The prednisone has made this incredibly hard. It’s hard to feel good physically when your self-esteem has been totally crushed.
Everyone's A Doctor
Why is it that people are so free with their opinions when you’re sick? Don’t get me wrong, there are certain people that I want/need an opinion from. However, all of this makes me realize that people aren’t always tactful.
Would you tell a cancer patient who is having chemotherapy that they’ve lost their hair?
I didn’t think so…
So why, then, is it necessary to tell me that my face has rounded?
I’m on steroids. I know!
Did anyone ever stop to think that I might be self-conscious about it?
Did anyone ever stop to think that maybe I just don’t care because I am trying to get better here and a filled-out face is really, truly the least of my worries?
People can truly be cruel and caddy. I can only imagine what has been said about me behind my back over the past few months. I know the things that have been said about other people when they’ve been acting weird, so I can only imagine what people have said about my changing appearance and sometimes-strange behavior.
But you know what?
Do me a favor. The next time you’re wondering…
JUST ASK ME!
Would you tell a cancer patient who is having chemotherapy that they’ve lost their hair?
I didn’t think so…
So why, then, is it necessary to tell me that my face has rounded?
I’m on steroids. I know!
Did anyone ever stop to think that I might be self-conscious about it?
Did anyone ever stop to think that maybe I just don’t care because I am trying to get better here and a filled-out face is really, truly the least of my worries?
People can truly be cruel and caddy. I can only imagine what has been said about me behind my back over the past few months. I know the things that have been said about other people when they’ve been acting weird, so I can only imagine what people have said about my changing appearance and sometimes-strange behavior.
But you know what?
Do me a favor. The next time you’re wondering…
JUST ASK ME!
More Explaining How I Feel
So, I’ve spent a lot of time trying to put into understandable terms how I feel on a daily basis.
Some mornings I wake up and I feel like I’ve been hit by a truck. As if I would know what that feels like, right? But I’m telling you, that’s the best way to describe it.
Doctor C says that a lot of people describe feeling like they’ve been hit by a truck when they have autoimmune diseases. While it’s comforting to know I’m not the only one, somehow this is supposed to make me feel better?
Or I wake up feeling like I have a hangover, but I haven’t been drinking. I literally feel like I’m plastered against a wall. My head usually hurts and I want to fall back into bed. I’m nauseous and dizzy.
I’m pretty much tired all the time and never feel 100%.
Some mornings I wake up and I feel like I’ve been hit by a truck. As if I would know what that feels like, right? But I’m telling you, that’s the best way to describe it.
Doctor C says that a lot of people describe feeling like they’ve been hit by a truck when they have autoimmune diseases. While it’s comforting to know I’m not the only one, somehow this is supposed to make me feel better?
Or I wake up feeling like I have a hangover, but I haven’t been drinking. I literally feel like I’m plastered against a wall. My head usually hurts and I want to fall back into bed. I’m nauseous and dizzy.
I’m pretty much tired all the time and never feel 100%.
Autoimmune Diseases Are Complicated
So, I was going over some of my medical records yesterday and came across a letter that Doctor C wrote to Doctor B.
Two words hit me like a truck – Overlap Syndrome
I can think of two other phrases that have been swimming in my head the last few months, for which I have been filled with a fair amount of anxiety:
Multiple Connective Tissue Disorder (MCTD)
Undifferentiated Connective Tissue Disease (UCTD)
Rather than having Rheumatoid Arthritis or Lupus, it appears that I have both.
As if one of these diseases alone wasn’t “fun” enough!?!
Why is it that these diseases seem to come in pairs? I’ve done a lot of reading and it seems to me that most people who are in the autoimmune camp don’t just have one disease. Is this because these diseases are so hard to diagnose?
The thing is, both MCTD and UCTD are great umbrella categories because they fain actual diagnosis. Maybe I am too hung up on the need for a diagnosis, but I really feel like I can’t move on and it turns out I may never be able to.
One step forward, two steps back…
Two words hit me like a truck – Overlap Syndrome
I can think of two other phrases that have been swimming in my head the last few months, for which I have been filled with a fair amount of anxiety:
Multiple Connective Tissue Disorder (MCTD)
Undifferentiated Connective Tissue Disease (UCTD)
Rather than having Rheumatoid Arthritis or Lupus, it appears that I have both.
As if one of these diseases alone wasn’t “fun” enough!?!
Why is it that these diseases seem to come in pairs? I’ve done a lot of reading and it seems to me that most people who are in the autoimmune camp don’t just have one disease. Is this because these diseases are so hard to diagnose?
The thing is, both MCTD and UCTD are great umbrella categories because they fain actual diagnosis. Maybe I am too hung up on the need for a diagnosis, but I really feel like I can’t move on and it turns out I may never be able to.
One step forward, two steps back…
Monday, April 21, 2008
"This Woman's Work"
“This Woman’s Work” by Kate Bush:
“Pray God you can cope.
I stand outside this woman’s work,
This woman’s world.
Ooh, it’s hard on the man,
Now his part is over.
Now starts the craft of the father.
I know you have a little life in you yet.
I know you have a lot of strength left.
I know you have a little life in you yet.
I know you have a lot of strength left.
I should be crying, but I just can’t let it show.
I should be hoping, but I can't stop thinking
Of all the things I should’ve said,
That I never said.
All the things we should’ve done,
That we never did.
All the things I should've given,
But I didn’t.
Oh, darling, make it go,
Make it go away.
Give me these moments back.
Give them back to me.
Give me that little kiss.
Give me your hand.
(I know you have a little life in you yet.
I know you have a lot of strength left.
I know you have a little life in you yet.
I know you have a lot of strength left.)
I should be crying, but I just can’t let it show.
I should be hoping, but I can't stop thinking
Of all the things we should’ve said,
That were never said.
All the things we should’ve done,
That we never did.
All the things that you needed from me.
All the things that you wanted for me.
All the things that I should've given, But I didn't.
Oh, darling, make it go away.
Just make it go away now.”
From the album, “The Sensual World”
“Pray God you can cope.
I stand outside this woman’s work,
This woman’s world.
Ooh, it’s hard on the man,
Now his part is over.
Now starts the craft of the father.
I know you have a little life in you yet.
I know you have a lot of strength left.
I know you have a little life in you yet.
I know you have a lot of strength left.
I should be crying, but I just can’t let it show.
I should be hoping, but I can't stop thinking
Of all the things I should’ve said,
That I never said.
All the things we should’ve done,
That we never did.
All the things I should've given,
But I didn’t.
Oh, darling, make it go,
Make it go away.
Give me these moments back.
Give them back to me.
Give me that little kiss.
Give me your hand.
(I know you have a little life in you yet.
I know you have a lot of strength left.
I know you have a little life in you yet.
I know you have a lot of strength left.)
I should be crying, but I just can’t let it show.
I should be hoping, but I can't stop thinking
Of all the things we should’ve said,
That were never said.
All the things we should’ve done,
That we never did.
All the things that you needed from me.
All the things that you wanted for me.
All the things that I should've given, But I didn't.
Oh, darling, make it go away.
Just make it go away now.”
From the album, “The Sensual World”
Just In Case
Just in case anyone is wondering, none of these posts are meant to offend. To the contrary, it is my hope that the people who have been a part of my life thus far will be filled with more understanding of what I have been going through. This is, for me, an attempt to bridge the gap between my life and my situation, not to call anyone out. I am aware that unless you have experienced something like this, it’s pretty hard to empathize (completely). That’s why all I’m asking for is a little bit of understanding and I hope that I can give others the same respect in return, whatever their situation may be.
Future
I went from being a forward-looking person to having no future at all. When things were all over the place and the doctor’s weren’t really sure in what direction things we headed, I’d be shocked at the fact that they would schedule appointments three or four months in advance. Who plans that far in advance? Am I going to be around then? There was a point where I really didn’t know what life was going to be like. Every morning I woke up with a new, bizarre, unexplainable symptom, and yet, no one, including me, had any idea what was going on.
I think that being told you are sick is difficult, but if you have a diagnosis, at least you know. The not knowing is absolutely unbearable…
I think that being told you are sick is difficult, but if you have a diagnosis, at least you know. The not knowing is absolutely unbearable…
“Closer to Myself”
“Closer to Myself” by Kendall Payne:
“Digging deep, I feel my conscience burn.
I need to know who and what I am. This hunger jolts me from complacency.
Rocks me, makes me meet myself
Jacob walked a limp to remind him
Of the greater gift of the greater one.
But when I fell, I fell to my own resources
How can I carry the truth if I can’t even crawl to you?
I wanna feel something sweeter than this sin.
Cover me in leaves roll me over again.
I've been everybody else now I want to be
Something closer to myself
Paint me in a different light.
Shed me yet another coat of skin.
Mark me with ash until I'm clean again.
’cause I’m so sick and tired of being sick and tired.
I know I can love you, I know that I can La di da di da di da”
From the soundtrack of the movie, “Never Been Kissed”
“Digging deep, I feel my conscience burn.
I need to know who and what I am. This hunger jolts me from complacency.
Rocks me, makes me meet myself
Jacob walked a limp to remind him
Of the greater gift of the greater one.
But when I fell, I fell to my own resources
How can I carry the truth if I can’t even crawl to you?
I wanna feel something sweeter than this sin.
Cover me in leaves roll me over again.
I've been everybody else now I want to be
Something closer to myself
Paint me in a different light.
Shed me yet another coat of skin.
Mark me with ash until I'm clean again.
’cause I’m so sick and tired of being sick and tired.
I know I can love you, I know that I can La di da di da di da”
From the soundtrack of the movie, “Never Been Kissed”
Friday, April 18, 2008
"The Last Lecture"
I just finished reading “The Last Lecture” by Randy Pausch. For those of you who don’t know, he was diagnosed with pancreatic cancer and asked to give a “Last Lecture” at Carnegie Mellon. Well, the lecture ended up all over the Internet and has since been turned into a book.
And what a truly inspiring book it is. Randy’s courage and strength should be a lesson to us all. In the face of great adversity, we can still beat the odds (even when the odds are stacked against us, we can still beat them!).
While the whole book was great, there were a few things that particularly stuck with me.
Sometimes admitting that there are some brick walls we aren’t even going to attempt, I think, is braver than trying to attempt them. This whole experience has taught me to accept, even embrace, my limitations. I’ve always been jealous of people who run marathons. I’m not going to lie, but I never was much of a runner. However, in the back of my mind, I’ve always aspired that one day, I would run a marathon. For all intents and purposes, that probably won’t happen now. You don’t know what you’ve got until it’s gone, right? Maybe someday I’ll be able do it, but if not, that’s okay, too!
“The Lost Art of the Thank-You Notes” (161-163)
I couldn’t agree more with this one. I was taught to send a thank-you note for almost everything. Not a thank-you e-mail, but a handwritten note as a gesture to truly show my thanks and appreciation. So few people do this anymore. And I think in the long run, it truly makes a big impact.
“No job is beneath you” (168-169)
I’ve come across a lot of people lately who have given up opportunities because they feel they are “too good for them.”
I think the sooner we realize that we are only as good as our worst flaw, the better off we are. I’d rather feel poorly about myself and have others build me up than think too highly of myself and have people think I’m a complete jerk.
I’ve been guilty of this, too, in recent memory. But the thing is, I “womaned” up and accepted that I might have to make due with Plan B. And wouldn’t you know that as soon as I made terms with Plan B, Plan A came to fruition? It’s funny how sometimes life has a way of working itself out in our favor. Not always, but sometimes…
“If you can find your footing between two cultures, sometimes you can have the best of both worlds” (171).
Now I know that Randy is not here attempting to channel his inner Hannah Montana. At least, I think he’s not. He’s talking about something more esoteric.
For me, this makes me think of the battle that has ranged between my world and the medical world.
During this experience, I’ve had mixed feelings about Doctor C. But the realization that I came to is that for Doctor C, all of this is very normal, everyday stuff. But for me, this whole experience has been anything but normal. Somehow, I have to find a way to bridge these two very different, very distinct worlds. In order to fully cope with the situation, I will have to learn to accept various aspects of the medical world as a part of my life.
I’ve even had several people suggest to me that I should think about going into medicine because I’ve become so educated throughout this experience so far. I don’t think so...
“…the questions are more important than the answers” (195)
Despite any evidence to the contrary, I think that this statement is quite true. In communicating with Doctor C, I’ve learned that our best encounters are when I ask smart, calculated questions. The answers, while not always what I want to hear, make me feel fulfilled when they are truthful.
This experience has made me realize that I don’t need to coddled. While I may get emotional about things, I can handle the truth, but I need to be given the truth in order to really be able to handle it and face it head on. I can’t ask good questions if I’m not fully informed about the situation.
At my most frustrated, I felt like either my doctors knew more than they were telling me or they knew less than they were pretending to. Either of these options, in my opinion, was problematic. But the search for answers was a less fruitful pursuit than my ability to ask the right questions, questions that the doctors couldn’t avoid answering.
I have to say that it's not often that a book comes along that makes you laugh and cry, and hits all the right notes for the time of life your in. This book did it for me and I hope that if you decide to read it, you too, will be inspired
*****
(Pausch, Randy. The Last Lecture. New York: Hyperion, 2008.)
And what a truly inspiring book it is. Randy’s courage and strength should be a lesson to us all. In the face of great adversity, we can still beat the odds (even when the odds are stacked against us, we can still beat them!).
While the whole book was great, there were a few things that particularly stuck with me.
*****
“The brick walls are there for a reason. They’re not there to keep us out. The brick walls are there to give us a chance to show how badly we want something” (51-52).
Sometimes admitting that there are some brick walls we aren’t even going to attempt, I think, is braver than trying to attempt them. This whole experience has taught me to accept, even embrace, my limitations. I’ve always been jealous of people who run marathons. I’m not going to lie, but I never was much of a runner. However, in the back of my mind, I’ve always aspired that one day, I would run a marathon. For all intents and purposes, that probably won’t happen now. You don’t know what you’ve got until it’s gone, right? Maybe someday I’ll be able do it, but if not, that’s okay, too!
“The Lost Art of the Thank-You Notes” (161-163)
I couldn’t agree more with this one. I was taught to send a thank-you note for almost everything. Not a thank-you e-mail, but a handwritten note as a gesture to truly show my thanks and appreciation. So few people do this anymore. And I think in the long run, it truly makes a big impact.
“No job is beneath you” (168-169)
I’ve come across a lot of people lately who have given up opportunities because they feel they are “too good for them.”
I think the sooner we realize that we are only as good as our worst flaw, the better off we are. I’d rather feel poorly about myself and have others build me up than think too highly of myself and have people think I’m a complete jerk.
I’ve been guilty of this, too, in recent memory. But the thing is, I “womaned” up and accepted that I might have to make due with Plan B. And wouldn’t you know that as soon as I made terms with Plan B, Plan A came to fruition? It’s funny how sometimes life has a way of working itself out in our favor. Not always, but sometimes…
“If you can find your footing between two cultures, sometimes you can have the best of both worlds” (171).
Now I know that Randy is not here attempting to channel his inner Hannah Montana. At least, I think he’s not. He’s talking about something more esoteric.
For me, this makes me think of the battle that has ranged between my world and the medical world.
During this experience, I’ve had mixed feelings about Doctor C. But the realization that I came to is that for Doctor C, all of this is very normal, everyday stuff. But for me, this whole experience has been anything but normal. Somehow, I have to find a way to bridge these two very different, very distinct worlds. In order to fully cope with the situation, I will have to learn to accept various aspects of the medical world as a part of my life.
I’ve even had several people suggest to me that I should think about going into medicine because I’ve become so educated throughout this experience so far. I don’t think so...
“…the questions are more important than the answers” (195)
Despite any evidence to the contrary, I think that this statement is quite true. In communicating with Doctor C, I’ve learned that our best encounters are when I ask smart, calculated questions. The answers, while not always what I want to hear, make me feel fulfilled when they are truthful.
This experience has made me realize that I don’t need to coddled. While I may get emotional about things, I can handle the truth, but I need to be given the truth in order to really be able to handle it and face it head on. I can’t ask good questions if I’m not fully informed about the situation.
At my most frustrated, I felt like either my doctors knew more than they were telling me or they knew less than they were pretending to. Either of these options, in my opinion, was problematic. But the search for answers was a less fruitful pursuit than my ability to ask the right questions, questions that the doctors couldn’t avoid answering.
*****
I have to say that it's not often that a book comes along that makes you laugh and cry, and hits all the right notes for the time of life your in. This book did it for me and I hope that if you decide to read it, you too, will be inspired
*****
(Pausch, Randy. The Last Lecture. New York: Hyperion, 2008.)
The Little Things in Life
When all of this happened, my first instinct was that I had to stop worrying about and letting the little things in life consume me.
I soon realized, however, that this is easier said than done.
When you are feeling awful and all you want is a little compassion and empathy from others and you don’t receive it, the smallest things can set you off.
The little things become even more frustrating because they mean so little to me and so much to other people.
I’ve told many people that I don’t expect them to share my priorities or worldview, but that they do have to accept that our priorities are different.
I’ve learned that a lot of people don’t like to be so open-minded…
I soon realized, however, that this is easier said than done.
When you are feeling awful and all you want is a little compassion and empathy from others and you don’t receive it, the smallest things can set you off.
The little things become even more frustrating because they mean so little to me and so much to other people.
I’ve told many people that I don’t expect them to share my priorities or worldview, but that they do have to accept that our priorities are different.
I’ve learned that a lot of people don’t like to be so open-minded…
Tide with Downy
Detergent and fabric softener combined in the same container…
Need I say more?
Need I say more?
This makes life so much easier. My hands and arms will thank me!
The Joy of Cooking
It seems the one thing I really enjoy doing when I’m feeling good is cooking.
Not just experiment with new recipes, but spend hours in the kitchen preparing elaborate meals for myself.
Not just experiment with new recipes, but spend hours in the kitchen preparing elaborate meals for myself.
My Giant, Pink Bag
What’s so ironic about a giant, pink bag, you ask?
I’m a fairly small person, so a big bag may seem a little bit strange and overwhelming.
But I have a lot of figurative baggage, so it seems only fitting to literally carry it around with me!
I’m a fairly small person, so a big bag may seem a little bit strange and overwhelming.
But I have a lot of figurative baggage, so it seems only fitting to literally carry it around with me!
:)
Opposable Thumb
As humans, we are evolutionarily inclined in some departments, but not others.
The opposable thumb is one of those things that we, as humans, don’t have the market cornered on. Other animals share this trait in common with us.
However, I can speak from experience when I say that not having a properly functioning opposable thumb is a real downer. The thumb on my right hand likes to freeze up and stop me in my tracks.
These painful, often embarrassing episodes, seek to show that we can never be too proud and never take the simple things in life for granted. The days when all of my body parts function fairly normally with minimal pain and stiffness, are days when I truly feel lucky.
Before, I never would have consider walking up the stairs a feat of greatness. But now, some of the most celebrated moments are those when I manage to complete the tasks of the day.
The opposable thumb is one of those things that we, as humans, don’t have the market cornered on. Other animals share this trait in common with us.
However, I can speak from experience when I say that not having a properly functioning opposable thumb is a real downer. The thumb on my right hand likes to freeze up and stop me in my tracks.
These painful, often embarrassing episodes, seek to show that we can never be too proud and never take the simple things in life for granted. The days when all of my body parts function fairly normally with minimal pain and stiffness, are days when I truly feel lucky.
Before, I never would have consider walking up the stairs a feat of greatness. But now, some of the most celebrated moments are those when I manage to complete the tasks of the day.
Adjustable, Massaging Showerhead
Not for the reason you’re thinking!!! Get your mind out of the gutter…
For the holiday’s, I asked my parents for an adjustable showerhead with massage settings. It turned out to be one of the best and most useful gifts I have ever received. The luxury of a hot shower is truly priceless.
It has been a true lifesaver. It’s sometimes the only thing that manages to soothe my aching body. I just stand there, letting the spray wash over me, and I truly feel cleansed.
I never realized how truly rejuvenating a shower could be, but somehow, on most mornings, it manages to bring some of the life back into me.
For the holiday’s, I asked my parents for an adjustable showerhead with massage settings. It turned out to be one of the best and most useful gifts I have ever received. The luxury of a hot shower is truly priceless.
It has been a true lifesaver. It’s sometimes the only thing that manages to soothe my aching body. I just stand there, letting the spray wash over me, and I truly feel cleansed.
I never realized how truly rejuvenating a shower could be, but somehow, on most mornings, it manages to bring some of the life back into me.
Life's Little Pleasures
You know, one thing that autoimmune disease brings to the fore are the everyday things we take for granted. In this group of postings, I'm going to be talking about just that!
"My Turn to be Brave"
There are a few songs that I’ve found inspiring lately.
One is “Brave” by Idina Menzel:
“I don't know just where I’m going
and tomorrow it's a little overwhelmingand the air is cold
and I’m not the same anymore
I've been running in your direction for too long now
I 've lost my own reflection
and I can't look down if you're not there to catch me when I fall
If this is the moment I stand here on my own
If this is my right of passage that somehow leads me home
I might be afraid but it's my turn to be brave
If this is the last chance before we say goodbye
at least it's the first day of the rest of my life
I can't be afraid 'cause it's my turn to be brave
All along all I ever wanted was to be the light when your life was daunting
but I can't see mine when I feel as though you're pushing me away
Well, who’s to blame?
Are we making the right choices?
'Cause we can't be sure if we're hearing our own voicesa
as we close the door even though we are so desperate to stay
If this is the moment I stand here on my own
If this is my right of passage that somehow leads me home
I might be afraid but it's my turn to be brave
If this is the last chance before we say goodbye
at least it's the first day of the rest of my life
I can't be afraid 'cause it's my turn to be brave
and I might still cry
and I might still bleed
these thorns in my sidethis heart on my sleeve
and lightning may strike this ground at my feet
and I might still crash
but I still believe
This is the moment I stand here all alone
with everything I have inside everything I own
I might be afraid but it's my turn to be brave
If this is the last time before we say goodbye
at least it's the first day of the rest of my life
I can't be afraid it's my turn to be brave”
From the album, “I Stand”
One is “Brave” by Idina Menzel:
“I don't know just where I’m going
and tomorrow it's a little overwhelmingand the air is cold
and I’m not the same anymore
I've been running in your direction for too long now
I 've lost my own reflection
and I can't look down if you're not there to catch me when I fall
If this is the moment I stand here on my own
If this is my right of passage that somehow leads me home
I might be afraid but it's my turn to be brave
If this is the last chance before we say goodbye
at least it's the first day of the rest of my life
I can't be afraid 'cause it's my turn to be brave
All along all I ever wanted was to be the light when your life was daunting
but I can't see mine when I feel as though you're pushing me away
Well, who’s to blame?
Are we making the right choices?
'Cause we can't be sure if we're hearing our own voicesa
as we close the door even though we are so desperate to stay
If this is the moment I stand here on my own
If this is my right of passage that somehow leads me home
I might be afraid but it's my turn to be brave
If this is the last chance before we say goodbye
at least it's the first day of the rest of my life
I can't be afraid 'cause it's my turn to be brave
and I might still cry
and I might still bleed
these thorns in my sidethis heart on my sleeve
and lightning may strike this ground at my feet
and I might still crash
but I still believe
This is the moment I stand here all alone
with everything I have inside everything I own
I might be afraid but it's my turn to be brave
If this is the last time before we say goodbye
at least it's the first day of the rest of my life
I can't be afraid it's my turn to be brave”
From the album, “I Stand”
*****
When all of this first started, I was truly paralyzed by the fear of the unknown. But now, I can finally stand up and say, “It’s my turn to be brave!”
When all of this first started, I was truly paralyzed by the fear of the unknown. But now, I can finally stand up and say, “It’s my turn to be brave!”
Making Amends
When all of this first started and I was feeling completely awful, but no one could figure out what was wrong with me, I was struck by the immediate need to mend broken relationships in my life. This seemed to me like an incredibly important thing to do.
However, it was not met with the same enthusiasm by those I sought forgiveness from.
Now, I wouldn’t say I had done anything that was truly abominable to those I sought solace from. But I felt like there were loose ends that I wanted to try and mend.
Even so, most people didn’t even bother to respond.
And do you know why? I think it freaks people out. It takes a lot of courage to be the bigger person and want to put the past behind you. And I just think that some people aren’t mature enough to step up to that challenge.
While I was disappointed that the situations weren’t resolved, I felt better knowing that I had taken the initiative to make amends. Now the ball was in the other person’s court. And even if I didn’t get the response I had hoped for, I knew that I was the bigger person, and in some small way, I felt forgiven, anyway.
However, it was not met with the same enthusiasm by those I sought forgiveness from.
Now, I wouldn’t say I had done anything that was truly abominable to those I sought solace from. But I felt like there were loose ends that I wanted to try and mend.
Even so, most people didn’t even bother to respond.
And do you know why? I think it freaks people out. It takes a lot of courage to be the bigger person and want to put the past behind you. And I just think that some people aren’t mature enough to step up to that challenge.
While I was disappointed that the situations weren’t resolved, I felt better knowing that I had taken the initiative to make amends. Now the ball was in the other person’s court. And even if I didn’t get the response I had hoped for, I knew that I was the bigger person, and in some small way, I felt forgiven, anyway.
Denial
Truth be told, the reason I’ve been pressing Doctor C for a diagnosis is simple. In a jaded way, I feel like my illness doesn’t really exist until a diagnosis is placed upon it.
I know that this isn’t quite true, because I know how I’ve been feeling for nearly the past year. But there is always the hope that I’ll go to the doctor one day soon and they’ll say, “Surprise! We were wrong. Take this one pill and all of this will be over…”
There are times where I truly feel I am experience all of this outside of myself. I’m aware of what’s going on, but it feels like it’s a million miles away, happening to someone else. I’m the spectator in someone else’s life. It’s all very surreal, really. It’s like, maybe if opt not to think about it, I can will it away. But these attempts, too, have been unsuccessful.
I know that this isn’t quite true, because I know how I’ve been feeling for nearly the past year. But there is always the hope that I’ll go to the doctor one day soon and they’ll say, “Surprise! We were wrong. Take this one pill and all of this will be over…”
There are times where I truly feel I am experience all of this outside of myself. I’m aware of what’s going on, but it feels like it’s a million miles away, happening to someone else. I’m the spectator in someone else’s life. It’s all very surreal, really. It’s like, maybe if opt not to think about it, I can will it away. But these attempts, too, have been unsuccessful.
On Other People's Opinions
One of the toughest parts of the past few months has been the reaction of others to my situation. The consensus has been, if you look healthy, you must be healthy. Unfortunately, you can’t always judge a book by its cover.
I have tried to explain to those around me that the day I look “truly” sick or am unable to function to the point where I can’t get out of bed or go about my normal routine, is the day I am finished. To them, this seems like years and years away. To me, it is a fear I carry with me on a daily basis. People don’t realize how precious their health is until they don’t have it anymore.
I’ve found that those who are the most supportive aren’t the ones who are immediately available. They aren’t the ones that I see on a daily basis. They are the ones who are a phone call away, who live from a few hours away to across the country. Why is this? Maybe the reality scares the people who see me all the time. Maybe they are in denial as much as I am (A post about Denial to follow).
I have tried to explain to those around me that the day I look “truly” sick or am unable to function to the point where I can’t get out of bed or go about my normal routine, is the day I am finished. To them, this seems like years and years away. To me, it is a fear I carry with me on a daily basis. People don’t realize how precious their health is until they don’t have it anymore.
I’ve found that those who are the most supportive aren’t the ones who are immediately available. They aren’t the ones that I see on a daily basis. They are the ones who are a phone call away, who live from a few hours away to across the country. Why is this? Maybe the reality scares the people who see me all the time. Maybe they are in denial as much as I am (A post about Denial to follow).
Feeling Like You Have the Flu
I’ve attempted several times to explain to others what I feel like on a daily basis. While this can vary drastically, even from hour to hour, the best way to describe it is that I feel like I have the flu… all the time. You know that achy, nauseaus, dizzy, just plain crummy feeling you have when you have the flu? That’s pretty much the way I feel on nearly a daily basis.
Asking Why
While I didn’t live my life before thinking that I was immortal, I think there was a part of me that didn’t think that anything like this could happen to me, at least not at this point in my life.
As I’ve thought back to the past few years, it almost seems like all of this was, to a certain extent, somewhat inevitable. The summers after my sophomore and junior years of college, I worked non-stop at an internship. No one other than myself caused me to do this. Then, in my senior year, I wrote an honors thesis, interviewing short women, which pretty much enveloped my life. I worked myself to the bone. I thought I was taking care of myself.
However, when I think back, there were signs that all was not right. Three years ago, I had a terrible spell of vertigo (the event that I believe triggered my immune system to go into “attack mode”). I woke up one morning and couldn’t make heads or tails of the floor or the ceiling. I thought that the episode would pass, but it didn’t. I almost drowned in the shower, because I kept slamming into the walls. I had no depth perception. I couldn’t eat. I could barely see straight. I ended up having to call an ambulance and was taken to the hospital. I had four or five more, less severe episodes of vertigo after that. I had repeated eye and strept throat infections, and random stomach bugs that put me in bed for a few days at a time. I attributed it all to being a stressed out college student. Apparently, I was wrong.
I’ve since come to learn that if you experience repeated acute episodes of illness more than a few times a year, this should be a note to self that something more might be going on.
And the stories of many others who have been diagnosed with autoimmune diseases follow a similar trajectory. We are all go, go, go people until our bodies make us stop and take note with a stunning blow.
I wish I could go back and reverse the toll that the past four or so years have taken, but I don’t have the power to do that. I do have the power, however, to make significant life changes that will ensure that I am able to fight this illness to the fullest extent possible.
As I’ve thought back to the past few years, it almost seems like all of this was, to a certain extent, somewhat inevitable. The summers after my sophomore and junior years of college, I worked non-stop at an internship. No one other than myself caused me to do this. Then, in my senior year, I wrote an honors thesis, interviewing short women, which pretty much enveloped my life. I worked myself to the bone. I thought I was taking care of myself.
However, when I think back, there were signs that all was not right. Three years ago, I had a terrible spell of vertigo (the event that I believe triggered my immune system to go into “attack mode”). I woke up one morning and couldn’t make heads or tails of the floor or the ceiling. I thought that the episode would pass, but it didn’t. I almost drowned in the shower, because I kept slamming into the walls. I had no depth perception. I couldn’t eat. I could barely see straight. I ended up having to call an ambulance and was taken to the hospital. I had four or five more, less severe episodes of vertigo after that. I had repeated eye and strept throat infections, and random stomach bugs that put me in bed for a few days at a time. I attributed it all to being a stressed out college student. Apparently, I was wrong.
I’ve since come to learn that if you experience repeated acute episodes of illness more than a few times a year, this should be a note to self that something more might be going on.
And the stories of many others who have been diagnosed with autoimmune diseases follow a similar trajectory. We are all go, go, go people until our bodies make us stop and take note with a stunning blow.
I wish I could go back and reverse the toll that the past four or so years have taken, but I don’t have the power to do that. I do have the power, however, to make significant life changes that will ensure that I am able to fight this illness to the fullest extent possible.
"The Real Housewives of New York City"
Lately I’ve found myself obsessed with “The Real Housewives of New York City” of Bravo fame. I think it’s because I find the worries of uber rich people completely amusing.
You know, everyone thinks that rich people have it so easy, and in some ways, they do. However, it’s not as if they don’t have worries. Even though those worries might be different than most peoples, they exist, just the same.
It just goes to show that the old adage, “money doesn’t buy happiness,” is totally true!
You know, everyone thinks that rich people have it so easy, and in some ways, they do. However, it’s not as if they don’t have worries. Even though those worries might be different than most peoples, they exist, just the same.
It just goes to show that the old adage, “money doesn’t buy happiness,” is totally true!
Thursday, April 17, 2008
"The Autoimmune Epidemic"
My friends have termed my penchant for reading about autoimmune disease as pleasure reading. Um, since when does reading about incurable diseases count as a pleasurable experience?
For me, it’s all about educating myself so that I can make sure that I am able to get the best care possible, and so that I can, hopefully, educate others, as well.
So, if you read any book on autoimmune disease, I have to suggest “The Autoimmune Epidemic” by Donna Jackson Nakazawa and Dr. Douglas Kerr. This book has gotten a lot of press lately, but it truly is a very informative read. It is pretty scary and not the most uplifting, but I think it is a call to action, even for those who are not brought down by these diseases.
*****
(Nakazawa, Donna Jackson, and Douglas Kerr. The Autoimmune Epidemic. New York: Touchstone, 2008)
For me, it’s all about educating myself so that I can make sure that I am able to get the best care possible, and so that I can, hopefully, educate others, as well.
So, if you read any book on autoimmune disease, I have to suggest “The Autoimmune Epidemic” by Donna Jackson Nakazawa and Dr. Douglas Kerr. This book has gotten a lot of press lately, but it truly is a very informative read. It is pretty scary and not the most uplifting, but I think it is a call to action, even for those who are not brought down by these diseases.
*****
(Nakazawa, Donna Jackson, and Douglas Kerr. The Autoimmune Epidemic. New York: Touchstone, 2008)
My Story, Part II
*** WARNING: This is probably going to be long, too ***
So, over the past several months, I have seen a rheumatologist (Doctor C), a gastroenterologist (Doctor D), and an ear, nose, and throat doctor (Doctor E). I used to be the kid who hated blood and needles and now it has pretty much (sadly) become second nature to me. I've been poked and prodded more times than I like to even think about. But ultimately, if we can get my illness under control (notice I don't say "cured", because that's not possible), that will be worth everything.
If I didn't have much of a social life before, I certainly don't have one now. I've spent more time in doctor's offices than I have anywhere else in the past eight months, I've had to switch my primary care doctor from Doctor B to Doctor F. This was a difficult, but I think ultimately, the right decision.
I've learned through all this that the only one who truly knows your body is you. So if you think something is seriously wrong, keep fighting until someone will listen to you. Again, this goes back to being you're own advocate, but I can't stress it enough.
Anyway, I went off on a tangent, there. So, I finally went to Doctor C, who ran about a million blood tests to try and get more information on what might be going on with my body. The same tests that Doctor B had done had come back positive. Doctor C put me on low dose prednisone and hydroxychloroquine (It had been almost four months since initially going to Doctor B that I was put on medication by Doctor C).
In the meantime, I was having new symptoms almost daily, was feeling like I was being bounced around from doctor to doctor, and felt like I really wasn't being taken seriously. Along with not feeling good, I became intensely frustrated. I'm told that in some ways, this type of frustration is normal when you are diagnosed with an autoimmune disease because so many of these diseases avoid easy diagnosis.
I soon realized, however, that there was a part of my medical team that was not working and I was determined to figure out who it was. I determined that it was Doctor B, and as I suggested, have recently switched to Doctor F.
My current repertoire of medication includes low dose prednisone, hydroxychloroquine, omeprazole (for GERD caused by the prednisone), and cellcept. Although the closest I have come to a diagnosis is juvenile arthritis and/or adult lupus, the cellcept seems to indicate a more lupus like disease. I am still trying to decide what exactly this means for me.
So this, in a very long nutshell, is my story.
* These are the drugs I was prescribed. I am not suggesting that these will work for others or in the combinations I describe. Again, my journey... *
So, over the past several months, I have seen a rheumatologist (Doctor C), a gastroenterologist (Doctor D), and an ear, nose, and throat doctor (Doctor E). I used to be the kid who hated blood and needles and now it has pretty much (sadly) become second nature to me. I've been poked and prodded more times than I like to even think about. But ultimately, if we can get my illness under control (notice I don't say "cured", because that's not possible), that will be worth everything.
If I didn't have much of a social life before, I certainly don't have one now. I've spent more time in doctor's offices than I have anywhere else in the past eight months, I've had to switch my primary care doctor from Doctor B to Doctor F. This was a difficult, but I think ultimately, the right decision.
I've learned through all this that the only one who truly knows your body is you. So if you think something is seriously wrong, keep fighting until someone will listen to you. Again, this goes back to being you're own advocate, but I can't stress it enough.
Anyway, I went off on a tangent, there. So, I finally went to Doctor C, who ran about a million blood tests to try and get more information on what might be going on with my body. The same tests that Doctor B had done had come back positive. Doctor C put me on low dose prednisone and hydroxychloroquine (It had been almost four months since initially going to Doctor B that I was put on medication by Doctor C).
In the meantime, I was having new symptoms almost daily, was feeling like I was being bounced around from doctor to doctor, and felt like I really wasn't being taken seriously. Along with not feeling good, I became intensely frustrated. I'm told that in some ways, this type of frustration is normal when you are diagnosed with an autoimmune disease because so many of these diseases avoid easy diagnosis.
I soon realized, however, that there was a part of my medical team that was not working and I was determined to figure out who it was. I determined that it was Doctor B, and as I suggested, have recently switched to Doctor F.
My current repertoire of medication includes low dose prednisone, hydroxychloroquine, omeprazole (for GERD caused by the prednisone), and cellcept. Although the closest I have come to a diagnosis is juvenile arthritis and/or adult lupus, the cellcept seems to indicate a more lupus like disease. I am still trying to decide what exactly this means for me.
So this, in a very long nutshell, is my story.
* These are the drugs I was prescribed. I am not suggesting that these will work for others or in the combinations I describe. Again, my journey... *
My Story, Part I
*** WARNING: This promises to be a long post!!! ***
So, just about a year ago, I had just completed an undergraduate thesis, graduated from college, and was starting graduate school in the fall. Then I started having an intense pain below my right rib. The pain became fairly constant and was pretty annoying, to say the least. Over the course of the summer, I went to Doctor A four times. I was repeatedly told that I was just constipated. Needless to say, the pain did not go away.
In August, I began having shooting pains in my legs and arms, which seemed to happen only after I worked out. I didn't really think all that much of it at the time. I figured I was just working myself too hard (talk about ironic foreshadowing!). Once I started graduate school, I began to see a new doctor, Doctor B. I also began feeling terrible all the time. I was exhausted, my entire body hurt, and I woke up every morning feeling either hung over or like I had been hit by a truck. I realized pretty quickly that this was NOT normal.
I told Doctor B about all of this and was told that I was just stressed out and should talk to a therapist. My response was that I've been stressed since I came out of the womb and never felt like this before. But I listened to Doctor B and went to talk to a psychologist. This did not make me feel better!!!
Doctor B began running tests. I was told that if I was tested for connective tissue diseases and the tests came back positive, it would cause a "fishing expedition". Obviously, I wanted to know what was wrong with me, but I never quite expected the tests to come back positive. I, like most people, thought arthritis was only a disease that "old" people get.
Anyway, so the results indicating some kind of connective tissue disease come back positive. This is NOT what I wanted to hear. It turns out that my organ function tests are all over the charts. Every time blood work is done, something new comes back positive. At this point, I'm feeling completely awful. I'm trying to survive my first semester of graduate school, literally dragging myself everywhere, and trying to put on a brave face. My original plan was not to tell anybody except my immediate family about what was going on until I had a definitive diagnosis. Well, as of writing this, I still don't have a definitive diagnosis...
* I do not intend to name names. For one thing, this is only my view of the situation. It is very possible that my doctor's would not agree with my portrayal and since they have no way to defend themselves, I have decided to keep them nameless. Also, who these doctor's are is really unimportant to the story itself. I am trying to highlight my journey *
So, just about a year ago, I had just completed an undergraduate thesis, graduated from college, and was starting graduate school in the fall. Then I started having an intense pain below my right rib. The pain became fairly constant and was pretty annoying, to say the least. Over the course of the summer, I went to Doctor A four times. I was repeatedly told that I was just constipated. Needless to say, the pain did not go away.
In August, I began having shooting pains in my legs and arms, which seemed to happen only after I worked out. I didn't really think all that much of it at the time. I figured I was just working myself too hard (talk about ironic foreshadowing!). Once I started graduate school, I began to see a new doctor, Doctor B. I also began feeling terrible all the time. I was exhausted, my entire body hurt, and I woke up every morning feeling either hung over or like I had been hit by a truck. I realized pretty quickly that this was NOT normal.
I told Doctor B about all of this and was told that I was just stressed out and should talk to a therapist. My response was that I've been stressed since I came out of the womb and never felt like this before. But I listened to Doctor B and went to talk to a psychologist. This did not make me feel better!!!
Doctor B began running tests. I was told that if I was tested for connective tissue diseases and the tests came back positive, it would cause a "fishing expedition". Obviously, I wanted to know what was wrong with me, but I never quite expected the tests to come back positive. I, like most people, thought arthritis was only a disease that "old" people get.
Anyway, so the results indicating some kind of connective tissue disease come back positive. This is NOT what I wanted to hear. It turns out that my organ function tests are all over the charts. Every time blood work is done, something new comes back positive. At this point, I'm feeling completely awful. I'm trying to survive my first semester of graduate school, literally dragging myself everywhere, and trying to put on a brave face. My original plan was not to tell anybody except my immediate family about what was going on until I had a definitive diagnosis. Well, as of writing this, I still don't have a definitive diagnosis...
* I do not intend to name names. For one thing, this is only my view of the situation. It is very possible that my doctor's would not agree with my portrayal and since they have no way to defend themselves, I have decided to keep them nameless. Also, who these doctor's are is really unimportant to the story itself. I am trying to highlight my journey *
Introduction
Hello all! I'm new to the world of blogging, but I felt that I had to take my recent experiences and make something productive out of them. The past year has been the most trying, scary, and difficult time of my life. I was diagnosed with an autoimmune disease. This would be a blow to anyone, but I am 22 years old. What frustrates me the most is that in all of the books I read, I keep coming across the same stories over and over again. Twenty-something’s who start having pain that they attribute to working out. They don't think much of it until they pretty much hit bottom and then have to go to multiple doctors until someone is able to figure things out. This is, needless to say, a lesson in frustration. And I've determined that if you can survive that part of the process, you can survive anything. It's crazy that this happens because over 20 million people in America suffer from autoimmune diseases of various sorts. And little research or funding is given to this class of illnesses, for which many are often horrible, debilitating, and have no cure. While most of this blog will focus on my illness and subsequent journey through the medical system, I didn't want to have the name focus solely on that. I hope that for those who know me, this will keep them updated and help to answer some questions that they may have been left with over the past few months. For those who don't know me, I hope this will provide some type of education, as I, in my limited blogging experience, have come across few blogs that deal with autoimmune diseases. I hope that this will empower people to be their own advocates when it comes to medical care. This is probably the greatest lesson I have learned this year. When it comes to medical care you are your own best friend and worst enemy. It is easy to shut down, but in the end, the only one you are hurting is yourself. I haven't gone into much detail here about how I got to where I am today, but I hope to do that in the very near future... Anyway, happy reading!!!