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)
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