Monday, June 30, 2008

"Getting Closer to Myself" on "On the Road to a Cure"

Wick Davis sent me a message that he has spotlighted my blog on the LFA blog site. Check it out:

http://lfa-inc.blogspot.com/2008/06/lupus-blog-spotlight-getting-closer-to.html

I have been talking to Wick lately, trying to get involved in LFA...

Thanks, Wick!

Reflections On An Altered Life

“So take a good look at my face
You’ll see my smile looks out of place
If you look closer, it’s easy to trace
The tracks of my tears”

(Smokey Robinson & The Miracles)

Maybe someday I will look back and not be able to imagine my life following any other trajectory than the one it is currently on.

But right now, that seems impossible. Right now I feel like I’m being led very slowly… nowhere. I still can’t believe that it hasn’t even been a year since I started having severe symptoms, since I knew that something was very wrong with me. It feels like a lot more time has gone by than that.

Acceptance is a hard pill to swallow. I say with caution that I think I have accepted my illness. What I haven’t accepted is myself with that illness. I haven’t accepted the loss of the person I was or the knowledge of the person I’m becoming. To some of you, maybe you ask what the difference is. I think I am able to say I have lupus and rheumatoid arthritis. What I haven’t learned how to do is live my life accordingly.

Sometimes when I go to Doctor C, I want to say that I wish we had met pre-illness. I mean, I wish we had met in the context of knowing who I was before all of this. I think a part of me is missing now, a part of me that I will never get back. Maybe I’ve lost the innocence and naivety that had once so gracefully carried me through life.

I try to spare others my pain. I can usually hide the pain from my face, but not from my voice and maybe not from my eyes. I have tried, and I think failed, at sparing my parents the pain of my illness.

No one asks for a sick child, let alone a twenty-something one newly on her own, yet so clearly unable to take on the world. I think while our parents are supposed to be there for us, they too, have their own lives to live. I know my parents will disagree with all of this, but it’s how I feel.

My parents spent four months by my side in the neonatal intensive care unit when I was born. I managed, completely subconsciously, to fight my way out of that. I didn’t know any better. I didn’t know anything at all. But now, I’m forced to wonder if there is any subconscious fight left in me. I can only hope that somewhere deep inside, there is a part of me that is bigger than these illnesses, a part of me that is fully prepared to take them on.

These are the things I am trying to keep in mind:
Others have it far worse than I do.
I haven’t been dealing with all of this for that long. It’s okay to feel the way I do about things. I just hope that sooner or later I come to some of sort of deal with myself, because I am going to be dealing with this for the rest of my life.

As I sat in my apartment, prisoner to the couch, I thought, maybe I’ll put some non-pajama clothes on and go to Starbuck’s. But the thought of an eight-block trek was too daunting. It’s funny. My friends are running marathons. I’m trying to tackle walking to Starbuck’s. I used to think that the only way to get through this would be to push myself to my limits. I’m not sure that’s the way to go anymore.

When I was at the doctor on Friday, Doctor C said, Well, I don’t want to change too much right now. There’s a part of me that believes getting off all of the medication and starting again might be smart. Another part of me thinks that’s really a dumb way to go.

Everywhere around me, life is moving, meanwhile, I’m sleeping my life away. I don’t disagree with Doctor C that more “restful” rest is necessary. But my life has never been about sitting by and watching others live my dreams. However, this most recent stint with the guys and gals in white (doctors) made me realize that pushing myself too far gets me absolutely nowhere.

I’ve realized that no one is going to tell me how to live my life. I have to figure that out on my own.

What I’ve come to realize is that whether the glass is half full or half empty, it is still a glass. So whether I see my life as impossible or worth living, it is still my life.

A while ago, someone told me that I had a mind shift. I had gone from seeing my diseases as taking over my life and being my life, to living my life with illness. Honestly, given the way I feel at the moment, I think that was the Prednisone talking more than me. And I’ve resigned myself to the fact that the physical pain will not resolve on its own, without medication. But I want to be sure that when the emotional pain resolves, it is because I have resolved it, not some drug that is supposed to be doing other things for me.

I have to say that I gained more respect for Doctor C after this last appointment. There were things there that hadn’t been there in the past. There was mutual respect. Doctor C seemed to actually care about me, asked what was going on in my life, listened to what I had to say about the Prednsione. I think that maybe Doctor C is starting to realize I’m not some dumb kid who complains all the time. I waited nearly a month of feeling pretty awful before I went to any doctor. I’ve given the Prednisone seven months to prove me wrong. I’m not rash. I don’t jump in and out of things. I think things through.

Honestly, most of this post was written pre-weekend. I am feeling a lot better than I have been the past few weeks. But this most recent flare or whatever you want to call it made me realize that things aren’t going to be easy. If the necessary thing to make me feel human again is a muscle relaxant/sleeping pill, I’m okay with that. I guess I’m still trying to read my body’s signals and figure out when I really need the help of a doctor or not. And it wasn’t until Doctor C asked me how I’d been sleeping that I realized, while I’d been attempting to get a good amount of sleep, it wasn’t working all that well. But last night, when my head hit the pillow, I didn’t have to think about anything but sleep, which is something I’ve been missing for a long, long time.

“Crash and Burn”

“Crash and Burn” by Savage Garden:

“When you feel all alone
And the world has turned its back on you
Give me a moment please to tame your wild, wild heart
I know you feel like the walls are closing in on you
It’s hard to find relief and people can be so cold
When darkness is upon your door and you feel like you can’t take anymore
Let me be the one you call
If you jump I’ll break your fall
Lift you up and fly away with you into the night
If you need to fall apart
I can mend a broken heart
If you need to crash then crash and burn
You’re not alone
When you feel all alone
And a loyal friend is hard to find
You’re caught in a one way street
With the monsters in your head
When hopes and dreams are far away and
You feel like you can’t face the day
Let me be the one you call
If you jump I’ll break your fall
Lift you up and fly away with you into the night
If you need to fall apart
I can mend a broken heart
If you need to crash then crash and
You’re not alone
‘Cause there has always been heartache and pain
And when it’s over you’ll breathe again
You’ll breath again
When you feel all alone
And the world has turned its back on you
Give me a moment please
To tame your wild, wild
Let me be the one you call
If you jump I’ll break your fall
Lift you up and fly away with you into the night
If you need to fall apart
I can mend a broken heart
If you need to crash then crash and burn
You’re not alone”

From the album, “Affirmation

*****
It’s funny how the songs from my teenage years, like when I was 13, really meant nothing then. And now they all seem to hold new meaning for a life that feels like 13 was infinity ago.

“Blindsided”


I’ve been reading a lot lately. And I don’t put every book I read on here... But the chronic illness ones and the truly enjoyable occasional fiction read I like to share with others.

The thing that I loved about this book is that it expressed the ups and downs that a lot of us who have chronic illness feel. Some days we are ready to take on the world; other days we can barely even handle ourselves.

Richard Cohen’s memoir, “Blindsided,” is honest. It’s forthright. Sometimes it’s humorous, and sometimes it’s downright depressing. But it’s his story of struggling with multiple sclerosis and colon cancer. He struggles with feeling like he has lost his masculinity, like the very things that make him a man have been called into question by his illnesses.

The part that got to me the most was when Cohen talks about his children.
- His children only know him with his illness.
- There is a chance that they, too, will have multiple sclerosis.

I think a lot of us talk about how we are much more than our illnesses. But the people who come into our lives post-diagnosis know only that part of us. They don’t know anything about our previous lives or are former selves.

I know that my parents, and most parents for that matter, would want to do whatever they could to spare their children pain. I want to have kids someday. But there will always be the question of whether they will have the same issues that I do. So much about chronic illness is about “what ifs”. Obviously when that time comes, I will certainly have some decisions to make.

*****

“I am not just a collection of muscles and nerves, the wiring that has short-circuited my dreams. Who I am, my very identity rests in my head. It is from that fortress, my command post, that my being takes shape. Citizens of sickness, those who suffer from their own assaults on the body and spirit, know disappointment. Ours is a common siege. The battle to control our heads is every bit as important as combating these attacks on our bodies. The psychological war with illness is fought on two fronts, on the battlefield of the mind and in the depths of the heart” (xvi).

Despite bodies that fail and rail against us, I am tempted to agree that most often, our biggest obstacle is our brain. Especially for those of us who educate ourselves about our illnesses. We begin to know so much about our specific conditions that we might as well become doctors. Well, maybe not. But you know what I mean. We become consumed, and yet, every time I go to the doctor, I realize that I cannot begin to compete on that front. I know very little of what there is to know about the body in general. But I think I know too much about my own body.

“Coping is a personal art […] I am learning to cope, certainly the toughest course in my continuing education. And the seminar is never over. For me, coping must be relearned every day. Adjusting is not taught at any famous university […] Learning to live with adversity is instinctive and self-taught. It is the stuff of life (xviii) […] Coping is quiet. There is no fanfare, no confetti. There are no parades. Just a quiet task aimed at emotional well-being, if not survival, pursued in subdued and sober tones and spoken in whispers, not shouts. The formula for successful coping rests in the eye of the beholder. There is no magic. We simply know it when we live it. Making peace is not a one-shot deal but an effort that spans a lifetime” (171).

There is no such word as coped. It may exist in the dictionary, but I think that it always occurs in the present tense. You may say, I have coped with my illness for a long time. But you never say I’ve coped – I’m done coping. I don’t think there’s an end to coping. I do find these passages kind of funny given Cohen’s explicit judgment of the coping of others in “Strong at the Broken Places”.

“We only pretend we own exclusive rights to the truths of our lives so we can assure ourselves we are in control of our fates” (56).

I think when a person loses control of a part of their body and physical functioning, it is easy to push others away, to try and be brave and want to handle everything on our own. This gives people, namely me, a sense that I am still in control of something. Recently I have discovered that this is something that can and should be considered a negative coping mechanism. While it is not necessarily useful, I do see the logic used in considering to adopt it.

“Privacy belongs to those who feel they cannot reveal limitations they will not admit to themselves” (143).

I think this is sort of the crux of why I started my blog. I realized that hiding everything inside was going to get me nowhere, with others or myself. And eventually, in the game of life, our hand is revealed. We can only conceal the cards we play for so long. And for me, I think sooner than later proved to be beneficial. I vacillate, day-to-day, sometimes hour-to-hour about how I feel about what is happening in my life. But I don’t do it alone. There are people there to help me. And there will always be those, no matter what limitations we face, that aren’t going to be accepting. And I’ve learned that those are the people I need to purge from my life.

“I knew I was acting out in my head like a child, but I could not stop myself” (163).

This is how I feel about the Prednisone. Am I being stupid? Could be. But it’s hard to convince myself that now’s the time to learn lessons about life that some people are never able to. I don’t think I’m a vain person. I’m just trying to maintain control of some part of my body. I think that no matter how rational we think we are or try to be, there is some part of us that is irrational about one thing or another.

“I must rise above the culture of perfection and remember that I can be even if I can do longer do […] We all benefit from greater sensitivity toward others. I learned that lesson long ago and the hard way, to be sure. Disease adds dimension to a person, depth to the soul […] We all need to appreciate ourselves for what we are and stop whining about what we are not” (222, 232).

I think this is true. In order to truly embrace other people’s imperfections, you, yourself, have to be imperfect (and embrace it). And I don’t mean telling yourself you’re not a perfect person, but not really meaning it. As Cohen mentions in other portions of the book, as well, illness makes us more compassionate people than we were before. We are more accepting of others. I think until we have walked a mile in the shoes of others, we cannot truly judge them. I too, have been known, from time to time, to question why a person is the way they are (personality wise). But the thing is, the way we are is what makes us who we are. It makes us the reason why we are unique and exist in the world.

*****

I’m not going to lie. This book was difficult to read. It was filled with a mix of both hope and despair. It was a story, though, that shows how far reaching the affects of chronic illnesses are. Chronic illness doesn’t just affect the person with the disease.
*****
(Cohen, Richard M. Blindsided. New York: Harper Collins, 2004.)

"Rheumatoid Arthritis Treatment Guidelines Updated: New rules called 'extensive' but not meant to crowd physicians' clinical judgment"

THURSDAY, June 26 (HealthDay News) -- “New recommendations for the use of disease-modifying anti-rheumatic drugs (DMARDs) in the treatment of rheumatoid arthritis (RA) have been developed by the American College of Rheumatology.

The recommendations on the use of non-biologic and biologic DMARDs in RA address five key areas: indications for use; monitoring for side effects; assessing clinical response; screening for tuberculosis (a risk factor associated with biologic DMARDs); and under certain circumstances (i.e. high disease activity) the roles of cost and patient preference in choosing biologic agents.

The recommendations, published in the June issue of the journal Arthritis Care & Research, also take into account RA disease duration, disease severity, and prognostic features.

‘These recommendations were developed for specialist clinicians familiar with assessing RA disease activity and disease severity,’ project co-leader Dr. Kenneth Saag, professor of medicine and epidemiology at the University of Alabama at Birmingham, said in a prepared statement.

‘Applying these recommendations to clinical practice requires individualized patient assessment and clinical decision-making. The recommendations developed are not intended to be used in a ‘cookbook’ or prescriptive manner or to limit a physician's clinical judgment, but rather to provide guidance based on clinical evidence and expert panel input,’ Saag said.

The recommendations include:
- Methotrexate or leflunomide therapy is recommended for most RA patients.
- Methotrexate plus hydroxychloroquine is endorsed for patients with moderate to high disease activity.
- The triple DMARD combination of methotrexate plus hydroxychloroquine plus sulfasalazine for patients with poor prognostic features and moderate to high levels of disease activity.
- Prescribing anti-TNF agents -- etanercept, infliximab, or adalimumab -- along with methotrexate in early RA (less than 3 months) only for patients with high disease activity who had never received DMARDs. In intermediate- and longer-duration RA, anti-TNF agents are recommended for patients who had failed to respond adequately to methotrexate therapy.
- Reserving the fusion protein abatacept and the B-cell antibody rituximab for patients with at least moderate disease activity and poor disease prognosis for whom methotrexate in combination with or sequential administration of other nonbiologic DMARDs led to an inadequate response.
- Avoiding the initiation or resumption of treatment with methotrexate, leflunomide, or biologic agents for patients with active bacterial infection, active herpes-zoster viral infection, active or latent tuberculosis, or acute or chronic hepatitis B or C.
- Not prescribing anti-TNF agents to patients with a history of heart failure, with a history of lymphoma, or with multiple sclerosis or demyelinating disorders.
- Avoiding the initiation or resumption of methotrexate, leflunomide, or minocycline for RA patients planning for pregnancy and throughout the duration of pregnancy and breastfeeding.

‘These recommendations are extensive but not comprehensive, and it is intended that they will be regularly updated to reflect the rapidly growing scientific evidence in this area along with changing practice patterns in rheumatology,’ Saag said.”

*****
Sorry if this is old news to some of you, but it was new news to me. What I find particularly interesting about this article is the predominant use of methotrexate given the article I posted about it last week. The article from last week can be read here.

Friday, June 27, 2008

What A Day

Well, until yesterday, I had made it through June unscathed by doctor’s appointments. Then I had two today. One planned (sort of), the other not (at all).

It’s funny because either you can’t get a doctor’s appointment for four months (they figure if you die in the interim, you won’t need the appointment anyway) or their so eager to give you one that they won’t let you off the hook.

When I called yesterday to try and get an appointment with Doctor F, the woman on the phone was like You sound like you don’t feel good. No shit! Can you wait until tomorrow? Are you sure you can wait? If not, just come and we’ll try and get you in. Feel better. Shut up!!!

When I call to make an appointment with Doctor F, I have to lie about why I’m coming in. It’s always too complicated to explain over the phone, so I always settle for a stomachache or a sore throat, which isn’t necessarily a lie, but it’s not really the reason I’m making an appointment.

What I thought was going to be a list of a few little things, turned in to a list of 10 new, strange, and bizarre symptoms that I guess I had figured would go away if I avoided going to the doctor.

So, I went to Doctor F this morning and was told that my new symptoms seemed to be side effects of the Cellcept. I was told that while Doctor F wasn’t too worried, I should contact Doctor C TODAY. I contacted Doctor C and was told that I should come in TODAY. So I did.

My celebration about the Predisone was short lived. I am no longer on a “two week” plan. As of today, it’s looking more like three months. I’m staying on 1 mg, though, at least for now. Doctor C asked if some of what I could be feeling was from tapering the Prednisone. I said, truthfully, yes. But I am not going to admit it. Doctor C found my weak spot today. I was nearly in tears when I told Doctor C that unless it was the only thing to do, Prednisone is really killing what little self-esteem I have left. I basically said that I feel like crap and I look like crap – you’re doing wonders for my social life. (As was evidenced by my last post, I’m really passive aggressive when I don’t feel well)

The good thing (I guess) is that Doctor C and I are building more of a rapport. Doctor C was much “chattier” than usual. I personally wanted to stick a pen in my eye, but that’s because I felt so good. Although at least I know I’m not crazy and that this isn’t how I am supposed to be feeling. However, Doctor C did not think the way I have been feeling was because of side effects from the Cellcept.

And what’s the deal every time with asking me if I have fevers or night sweats? What exactly does Doctor C think is going on here?

When I went to check out at Doctor C’s office, the receptionist said to me It appears your super duper healthy. I looked at her bemused and in all seriousness said, Well, I don’t know what planet Doctor C is on if this is super duper healthy. She proceeded to tell me that Doctor C had forgotten to write down a diagnostic code. The story of my life… I’m 710, whatever that means.

Doctor C’s prescription: More rest and Flexeril, along with everything else.
Doctor F’s prescription: Less work…

6 tubes of blood, two urine specimens, and three hours of sleep later, and I’m not really feeling much better. So, I think I’m going to apologize in advance for not posting much in the next few days. I’m am going to try and follow my doctors’ orders – less work, more rest… at least for the weekend…

I hope you feel better…

What does that actually mean when you have a chronic illness?

Illness and Self-Esteem

Before all of this, I had pretty low self-esteem. I was too short, not skinny enough, etc. etc. I think chronic illness brings body image into greater focus, but it also makes you shed that.

I’ve resigned myself to the fact that I’m never going to have the body I want, in more ways than one. But there are definitely days when I hate my body for not cooperating with me. Knowing that I will never have that doesn’t make it any easier to accept.

Some people are born with bodies they feel don’t belong to them. Others of us are diagnosed with them.

I’d be lying if I said that I didn’t feel like damaged goods. Because I do. Quite often actually. The struggles with everyday tasks are embarrassing, even when I am alone. My mind does dizzying dances trying to imagine what the future will be like. And it’s hard when things aren’t getting better to imagine a future full of possibility. A future that isn’t spent falling asleep on the couch at 7 o’clock at night.

Sometimes I feel like life is happening all around me. I’m standing on the sidelines cheering others on, while my own life stands relatively still. I mean, my life is still moving, but dreams have put on hold, certain things in my life aren’t accelerating at my desired speed.

As of late, I’ve been suffering from an episode of being passive-aggressive. I have to blame it on my lowered dose of prednisone, because this is what happened when I first started when I wasn’t on a high enough dose. I think I can also blame it on my increase in pain. Literally, I’m walking around with clenched teeth. Lately it’s enough to bring me to tears.

I’ve been ready to pick a fight with anyone – You want to make me angry, I’m ready – so it’s probably a good thing that I’ve spent most of the past week alone. I can’t imagine who would want to be with me. I don’t even really want to be with me right now.

So this brings me back to the self-esteem discussion. You know, I’m a twenty-something. I’m sincerely hoping that I won’t be alone forever. But a lot of the time, it’s pretty hard to imagine why someone else would want to be with me.

I mean, let’s face it, where self-esteem is concerned, chronic illness can be a pretty big buzz kill…

Thursday, June 26, 2008

Measuring The Good Days...

I guess the theme for today is commemorating the small things in my life.

I’ve learned to measure the good days in a few different ways:

1. Days that I can actually touch my arms and legs (gently) and not hit the ceiling in pain… are good days.
2. Days that I don’t have to take any medication beyond my prescriptions… are good days.
3. Days when I don’t have to ask (beg) for help or kindness, but I receive it anyway… are good days.

Yesterday was a pretty bad day, but I don’t really want to get into it right now…

1mg And Counting…

As of today, I’m down to 1mg of prednisone.

I have to say, I’m learning to mark the “small” milestones in my life, and for me, this is one of them.

Wednesday, June 25, 2008

“Strong At The Broken Places”


I’ve just finished reading “Strong at the Broken Places” by Richard M. Cohen. I was actually a little hesitant to read this book at first, because he is telling the stories of the people that he chronicles. He’s already had a chance to tell his own story. Now it’s time for him to let these people tell theirs.

I personally think that while he is telling the individual stories, he interjects his own experiences and opinions too much. He often tries to play junior psychologist. And it really bothers me. What right does he have to pass judgment on the way people cope with their illnesses?

At the outset, before I even started reading, I was of the mind that these people should be telling their own stories. No one knows us better than ourselves. And after reading this book, I believe that to be even more the case.

Okay, so aside from the criticisms… The thing that really struck me about the book was how the five people, whose stories are chronicled, impacted each other when they finally had a chance to meet in person.

I’ve learned over these past few months that the journey of chronic illness is a bonding experience. It is not one that can be faced alone, and yet, help often comes from unexpected places. The places of refuge of the past no longer suffice for what is needed. While it can be lonely when those immediately surrounding you do not understand, those that you encounter who do, become invaluable allies and friends. Even if we don’t have the same diseases, we can relate to each other in a very powerful way. Even if we are thousands of miles apart, we can help and support each other.

I am still struck today by something that happened during my steroid infusions. I was trying to ask the nurse if I was allowed to listen to my IPod. I couldn’t get her attention. The girl next to me, who was just a few years older, was there for chemo. She said to me, You do whatever you have to do to get through it. It was so strange, I thought to myself. This girl has cancer and she feels sympathy for me? What I have come to realize is that chronic illness transcends individual diseases. It transcends race, class, and gender (not in terms of economics and politics, but in terms of us). It brings together people who would otherwise probably never meet. I think that’s what “Strong at the Broken Places” attempts to teach us. We are “chronic,” yes, but we are also many other things, as well, and together, we truly can make a difference.

*****

“Chronic conditions attack body and spirit, assaulting the quality of our lives. Some are life-threatening. All are life-altering. Ever so slowly, moment by moment, function and sensation cease. Muscles and nerves malfunction. The body’s processes grow difficult. Our view of ourselves as normal human beings making our way in a neutral world is challenged as, in the eyes of others, we become our illnesses” (xvi).

On the one hand, I want to be seen as who I am, which is someone much more than a sick person. On the other hand, my illness is now a large part of who I am and continues to shape my self-concept and the person that I want to become.

“Chronic conditions do not resolve themselves. Unlike terminal illness, there is no high drama with these diseases. They are not sexy, and are little noticed or understood by an unknowing public that would prefer not to think about them. Those who are hit hard know the frustration of being marginalized, reduced, and pushed to the side by these chilly attitudes” (xvi).

I think, while I’ve said this in various ways many times, worse than the physical and emotional pain I suffer, the emotional pain caused by others is far more damaging. And I truly feel bad for those who have lived such easy lives to this point that they cannot, even for one second, imagine what anyone other than themselves goes through; whether those others are poor, have a chronic illness, or the host of other life conditions that some are lucky enough not to have to endure.

“We have so much at stake and so much to say, but it can take years of battle with our own demons to recognize the power of what we have to offer one another. Nobody will speak for us with the authority we bring to our own stories” (xvii).

Honestly, based on the way this book is written, this comment confuses me. I think it is incredibly true, but I’m not sure that this book comes even close to achieving that.

“For the sick, living among the healthy is no piece of cake. Empathy is in short supply. Daily brushes with public ignorance and indifference and the stigma of being sick in a society that worships health, brand and define us” (5).

No one wants to be sick, and any insinuation to the contrary is, putting it mildly, incredibly insulting. I know a lot of people who have a flare for the dramatic. A cold or the flu, for them, might as well be cancer. Any indication that their body is not well, is surely a death sentence. And I do not hold this against them. There inability to cope with such things is due to the fact that they have never experienced anything worse. Once they do, such common things will become nothing. Well, it won’t exactly become nothing. Because they will wreak havoc like they never did before. Even the simple things will be unrelenting, unstoppable. But the memory they will have of those past times will make them realize that those illnesses of old were nothing. They were a kink in the chain, not a break in the links holding the chain together.

So why hold my less than perfect body against me? I did not ask for this. I didn’t ask for my whole life to be turned upside-down at the age of 22. No one does. And so, we go from being people, human beings with thoughts and feelings, wants, needs, and desires, to being our illnesses. And nothing more.

“Know this. Ninety million Americans battle chronic illnesses everyday… Welcome to your future” (6).

This line sent shivers down my spine. To think that I am sick is one thing, to think about so many others having to deal with this type of thing, as well, is truly startling.

It’s funny. My dad has Crohn’s disease and has had it since he was 18. He was very sick when he was first diagnosed. He needed blood transfusions and almost died. But he has moved on. His illness does not define his life, and I often forget that his illness is even a part of it. I think he is truly one of the lucky ones, because I think it so rarely happens that your body is attacked to such a full extent and bounces back to near completion.

“Hiding is easier when the other person cannot see…” (12).

You know, I’ve come to take being alone more often, over the need to lie to people all the time. People are compelled to ask how you are. And in return, I am compelled to say that everything is fine, because, in truth, it is only a rare person that actually cares to hear the answer. And it is more rare that I feel strong enough to put myself out there emotionally and offer up the truth.

“The feeling of emotional abandonment by physicians, the very people who should be counselors as well as care providers, can be devastating… The quality of our connection to a trusted physician becomes an emotional lifeline. We lean at difference angles and with varying degrees of force in our search for support… When our heroes in white falter beneath our weight, we struggle to stay standing” (77, 79).

It is incredibly ironic. Those most vulnerable manage to melt away the veil of supremacy of those who are supposed to hold the power.

“Threatening illness demands a period of self-absorption so that, afterward, we can help those we care about” (81).

I think this is very true. Though my parents and I have never talked about it, I have thought a lot about how much I want or don’t want to put them through. I think that I have been so hell-bent on going to most of my appointments and stuff alone because I wanted to protect them. The question is – what do I want to protect them from? They’ve been through a lot in their lives. I would like to spare them the pain of watching their child’s body fail, not work to its full potential. You know, this road that I’ve embarked on is a never-ending one. It will be with me for the rest of my life, and unfortunately, it will be with them for the rest of theirs. I don’t want them to think that there was anything they could have done about this. Because there isn’t. There’s nothing anyone could have done. Our care and vigilance of ourselves and others only goes so far and it does not uncover the things we have yet to discover.

I think that if we admit to others that we are thinking about them and their needs, it brings a whole new reality to the situation. It suggests that what is happening is really happening, and not just to us.

“Too frequently, that is the story of chronic illness. Pain becomes a small price to pay for survival” (84).

Pain can be hidden behind a smiling veneer, behind the workings of pain medication. What can’t be hidden are the changes of the body, the physical changes that are visible, whether we want them to be our not. For some, they are immediately evident. For others, they will come later, after years of fighting them off, after years of hoping they may never come.

“The nightmare of unrelenting chronic illness is that pride must yield to survival, no matter how you were raised or what you think is expected of you” (101).

I think this is totally true. Those who have chronic illnesses have one fact thrown in their face – listen to your body… or else. I think, even after diagnosis, many of us continue to push, and we quickly learn how far pushing the limits gets us. It’s not as fun as it used to be. Pushing the limits isn’t as full of as much gusto.

“In a state of serious sickness, acceptance of a limited life can arrive in a low drip, especially when we are young. At first we resist any knowledge of our limitations. Then, little by little, we let the truth in, particularly when the insensitivities of others are thrown at our feet” (142).

I know I keep coming back to others, but I think that when you are young, acceptance does come because others make sure that you feel bad about yourself. And it’s easier to say I know what my issues are and I’m okay with them. Why can’t you be?

“Our imperfections take over who we come to believe we are. Limitations loom large. Even our loving families do not get that. They see what they choose or need to take in and process” (154).

This is so true. I think, especially in terms of those closest to us, their lack of understanding isn’t meant to be malicious. They see what they want to see, the person that existed before illness.

“I think of acceptance as giving in” (175).

Well, that certainly is something to ponder. On one hand, I’m inclined to agree. On the other, if we don’t accept our illnesses, how do we ever start to live again?

“The state of siege inflicted by illness and drugs never ends. Always there is the awful question, What’s next? Whatever the answer, and always there is a next, fatalism hovers nearby. Things always can get worse” (202).

But the thing people forget is that these are powerful drugs. Some even get into our DNA, trying to manipulate back to the way it was, just as the disease manipulated it to its current state of being.

“Those who suffer serious sickness know there is an ambulance with their name on it, parked just around the corner” (237).

This really resonates with me. I live near a hospital and my senses are constantly bombarded by the sounds of a lack of health – medical helicopters and ambulances have almost become the proverbial soundtrack of my life. When things were worse and even more unpredictable than they are now, I constantly wondered if one of those ambulances would be coming for me. I know that sounds morbid, but that’s what my life was like – waiting for the guillotine to fall. And I think there will always be this type of unease and worry. What will happen next. Will this be what sends my body into a tailspin? Those who have health know nothing of this.

“We can only hope the indifferent around us, next door and down the block or around the corner, will view us as more than our diagnoses and find value in who we are and what we can offer” (328).

I think this is all some of us hope for, and a hope that often falls on deaf ears.

*****

The individual stories in this book were truly amazing to read. I felt like I had a lot in common with them. But I do think that Cohen’s voice still comes through more than the others and I worry a little that their voices weren’t as loud as they hoped them to be.

I hope to have up a post about Cohen’s memoir, “Blindsided,” once I finish reading it.
*****

(Cohen, Richard M. Strong at the Broken Places. New York: Harper Collins, 2008.)

Feeling Little

I think I can finally put into words what the lack of understanding received from people feels like.

My mom has often told me the story that when I was a little girl, around age 2 or so, I was trying to tell her something, but she could not understand what I was trying to say. What in my head were obviously intelligible words meant absolutely nothing to her. I tried and tried and tried to get her to hear what I was saying until I got so frustrated that, if I remember the story correctly, we both ended up crying.

We were speaking the same language, but in a very different way, a way that made it incomprehensible to the other.

Even today, over 20 years later, I can exactly imagine what that little girl went through. The pain and anguish of not being understood, the frustration of talking and not being heard.
I think a lot of little kids have that same experience, of having their parents not understand what they are trying to tell them. I think it is the type of thing that we file away, in order to protect ourselves from the psychological pain that would continue to wreak havoc if we let it.

And some people are lucky that they can live their adult lives and never have to experience the gulf that can exist between you and others when there is the absence of understanding.

Others of us, like me, walk around pretending it’s okay, while inside, I am (we are) that little girl. There seems as if there is no escape from the never-ending lack of understanding when you have a chronic illness.

Monday, June 23, 2008

What You Make Of It

I’ve had friends tell me stories and qualify them with something like, I know this doesn’t hold a candle to what you’re going through. And despite my insistence on compassion and understanding, I’ve never asked for that.

Everyone has problems in their lives, and despite mine, I would like to think I am still cognizant of the problems of others.

Some people have lemons and they make lemonade. Others make lemon juice. Some people take what they’re given and make something better out of it. Others take what they are given and squeeze the life out of it.

Everyone handles things differently.

I guess it’s all in the way you look at things, in the way you play the game.

I, therefore, draw your attention to a poignant essay by Catherine Royce, who was diagnosed with Lou Gehrig’s Disease (ALS) in 2003. The essay, which she read on NPR, can be read and heard here.

“Everybody Hurts”

“Everybody Hurts” by R.E.M:

“When the day is long and the night, the night is yours alone,
When you’re sure you’ve had enough of this life, well hang on.
Don’t let yourself go, everybody cries and everybody hurts sometimes.

Sometimes everything is wrong. Now it’s time to sing along.
When your day is night alone, (hold on, hold on)
If you feel like letting go, (hold on)
When you think you’ve had too much of this life, well hang on.

Everybody hurts. Take comfort in your friends.
Everybody hurts. Don’t throw your hand. Oh, no. Don’t throw your hand.
If you feel like you’re alone, no, no, no, you are not alone

If you’re on your own in this life, the days and nights are long,
When you think you’ve had too much of this life to hang on.

Well, everybody hurts sometimes,
Everybody cries. And everybody hurts sometimes.
And everybody hurts sometimes. So, hold on, hold on.
Hold on, hold on. Hold on, hold on. Hold on, hold on. (repeat & fade)
(Everybody hurts. You are not alone.)”

From the album, “In Time

When It’s Okay To Say “No” and What’s Your Explanation For Saying It

What happens when someone you know, an acquaintance, asks for your help with something that you shouldn’t necessarily be doing?

Let me give you a hypothetical: An acquaintance of yours is moving (or some other similar event that they would need help with). This is not your best friend, not even someone you’ve known for more than a year. You are asked, along with several other people, in an open invitation, to help them move. What do you do?

I posed this question to a friend of mine recently.

The response?

Leslie, why would you even consider it?

My response back?

Because I’m a nice person?

On the one hand, part of me wonders if I’m there, will they know the difference?

On the other hand, I guess part of me hopes that if I help others, they will help me in return. I know this is na├»ve thinking, something I’ve known to be untrue for a long time, long before my illness. But I hope that if I ever need help moving, which most surely will happen, people, my friends, would be willing to do that. And I would hope that people would do this for me because they want to, not because they feel bad for me because I am sick…

So, do I give a seemingly lame excuse for my absence?

Or do I get really blunt and say, “I have lupus. I’m not feeling up to it”?*

Again I ask, at what point do people see your illness as simply a convenient excuse for getting out of things?

These types of situations fill me with a ton of anxiety…

I guess we have to learn to pick our battles.

And I’m still having a hard time deciding which battles are worth fighting.

* While I’m getting better at disclosure, I’m fairly certain that there are still few people that know what has been going on. Sure, anyone could Google me and stumble upon my blog. Then they would know. But I don’t just walk around telling people without there being a reason to.

We Have All Lost Something

While I think we would all like to claim that we are strong and remain unchanged despite our illnesses, I think the truth is that we have all lost some part of ourselves in the process.

I think some of us try and put on a brave face, some of us try to externally fix internal problems and pain. And although we know our efforts are futile, we do it anyway.

There is a part of ourselves that we will never get back. I know that I can never go back to the day before I started feeling sick. I know I will never be able to get that body, that person back. I will never be a person without an illness.
And while I’m sad for what I’ve lost, I think I have also gained some things, as well.

I think that if we admit to our losses and that our lives are forever changed, we can slowly begin to let our illnesses in. Not in as in infecting us. But “in” as in a part of our lives, maybe even a productive one.

Sunday, June 22, 2008

The End To A Very Long Week

Yes, it’s over… and I survived!!!

I had that class this week and it went okay. As I suspected would happen, I was so exhausted after work that I fell asleep reading. After two nights of this pathetic dance, in which I managed to get only half of the reading done, I opted to throw in the towel in order to maintain my sanity.

I think this may have been a watershed moment for me on two accounts:
1. I wasn’t wrong about how this would turn out, after all. I guess I know my body better than I think I do. The next time someone tries to get me to do something I know I can’t, I’ll have to fight harder against having to do it.
2. I think I’m finally learning that it’s okay to let things go. School has always come first for me, but now it’s clear to me that my health has to. Okay, so there wasn’t a whole lot at stake here. It wasn’t a graded class. But it made me realize that I can do little more than the minimum, and skate by, if need be. I don’t plan on making this a habit, but it’s nice to know that I can if I need to.

That’s not to say, however, that this experience doesn’t add worry to my life. It makes me wonder how in the world I am going to be able to handle class and teaching in the fall. But that is a whole other story. For now, I am just planning on enjoying what is left of this weekend, and gearing myself up for what promises to be yet another crazy work week (minus the class, thank goodness!).

"Rheumatoid Arthritis Drug Boosts Melanoma Incidence: Patients treated with methotrexate had a threefold increased risk of disease, report says"

FRIDAY, June 20 (HealthDay News) -- "Rheumatoid arthritis (RA) patients treated with methotrexate have an increased incidence of melanoma and other cancers, an Australian study says.

Methotrexate (MTX) is a disease-modifying anti-rheumatic drug (DMARD) commonly prescribed to RA patients. A link between the drug and cancer has been suggested, and there are even concerns that the drug itself may be carcinogenic, but research examining this concern has proven inconclusive.

This new study included 459 RA patients (309 women, 150 men) who started treatment with MTX prior to June 1986. During a total of 4,273 person-years of follow up (an average of 9.3 years per patient), 87 cancers were identified.

The researchers found that the RA patients who received MTX were 50 percent more likely than people in the general population to develop cancer of any kind. In terms of specific cancers, the RA patients had more than a fivefold increased risk of non-Hodgkin lymphoma, a threefold increased risk of melanoma, and almost a threefold increased risk of lung cancer.
The increased risk levels for non-Hodgkin lymphoma and lung cancer were similar to the findings of studies in Europe and in the United States. However, the increased risk for melanoma identified in this study was new.


'This study is, to our knowledge, the first to report an increased risk of melanoma in patients with RA treated with MTX compared with the general population,' lead author Dr. Rachelle Buchbinder said in a prepared statement.

'Futher investigation is needed to determine whether this risk is unique to Australia and what role MTX, immunosuppression per se, and/or environmental factors such as exposure to UV radiation play in its development,' she said. 'Our findings, taken together with other studies investigating the risk of skin cancer in patients with RA, may support a role for regular skin cancer screening for all patients with RA, particularly those receiving immunosuppressive therapy.'"

The study was published in the June issue of the journal Arthritis Care & Research.

*****
I know that some of you have been on Methotrexate. At my last rheumatologist appointment (Doctor C), the next step drugs of choice were Methotrexate or CellCept. As many of you know, I am currently on CellCept, Hydroxychloquine, and Prednisone. Based on what I have read, I am not sure that any of these drugs come without at least some risk, but I wanted to post this story, anyway...

Friday, June 20, 2008

The Fear Of Face Planting

Should I tell you how many times this week I came close to eating sidewalk or floor?

My feet just aren’t working properly. And I’m kind of unsteady, so any miniscule change in the texture or level of the sidewalk throws me off balance like I’m on one of those bounce house things. And lately when I walk more than a block, my calves feel like they are going to explode - not a good, fireworks kind of explosion, either.

With all these close calls, it’s bound to actually happen one of these days.

What’s The Deal With This Bone Popping Thing?

This was something I attributed to my rheumatoid arthritis. But I read an essay recently that suggests it’s a lupus thing.

But I haven’t read anything about this in any of my lupus books…

- Why does this happen?
- What does it mean?
- What do I do about it?

Not to mention the fact that it’s often quite painful, like an electric shock to my system, I’m finding I’m becoming like my own rock band – pop, pop, pop!

Hypochondria

Jenni Prokopy, Editor of Chronic Babe wrote an interesting post about hypochondria:

Am I a Hypochondriac?

I think that many of us with chronic illness can relate to this, as our symptoms (and/or diseases) are often met with skepticism from our family, friends, and even our doctors.

I know that when this has happened to me, it has been a very degrading experience. Especially when you live with an invisible illness, it’s often hard to “prove” to people that you are “truly” ill. You could shove your medical records in their face, but that might just scare them away.

I think it’s also easy to become obsessive about every little symptom when you have a chronic illness. For my own body, I really am unable to gauge what is normal anymore. But Jenni has a really practical and easy solution to this, that she dubs “The 24-hour rule.” She only calls her doctor if symptoms last longer than 24 hours. I think that’s a pretty good maxim to have.

Self-Imposed Isolation Vs. Disease Imposed Isolation: Is There A Difference?

It’s nice that some people in my life are telling me up front that they won’t be disappointed in me if I don’t take part in an activity. It’s really nice to be let off the hook for a change!

However, when is saying “no” a bad thing? At what point does saying “no” no longer become a function of your illness, but your illness becomes a convenient excuse for saying “no”.

And at what point do people get tired of hearing you say “no” that they give up on you completely?

It’s funny because when there was self-imposed isolation, I didn’t mind it that much. For instance, I’ve never been a big drinker, and before, when I heard about people going out, it didn’t really bother me, I wasn’t into it. But now, I hear people talk about it, and I feel left out. I know that I couldn’t physically handle it most of the time, but I’m 22 years old. There’s a certain expectation of the kind of life I’m supposed to be living. And I’m definitely not doing that. I don’t even mean drinking, but going out, in general. Lately I’m asleep on the couch when people would start going out.

I never had a problem handling peer pressure before, but now that it could have a negative impact on my health, I’m having a hard time resisting. What kind of sense does that make?

Is it possible to be young and chronically ill and have a social life?

Lupus & Arthritis + Bowling = Bad Combination

My internship had a social event last night… bowling!

Under normal circumstances, I am not a big fan of bowling, but this entire situation filled me with a lot of anxiety. And now seeing the way that I feel, rightfully so.

Last night, my fingers were so stiff and in pain, I thought they were going to break.

Don’t get me wrong. It was a fun night. But physically it was no picnic. Let’s be serious here… I was in pain before we even started. The pain only got worse…

I know I didn’t have to go to this event, and in retrospect, I probably shouldn’t have. But I didn’t want to seem antisocial. And I worried that I would have had more questions to answer if I didn’t go at all, than had I bowled poorly, which would have happened no matter what.

I wish there was some kind of guidebook:
- Activities to do under no circumstances
- Activities to do only when you’re feeling well
- Activities you can do almost any time

If only life we’re that easy, right? Or maybe I should know these kinds of things intuitively. I guess I’m still stuck in the phase of trying to make my life seem as normal as possible to those I don’t want to necessarily disclose my illness to.

Wednesday, June 18, 2008

Empathy Deficit Disorder (EDD)

Given my last few posts about people and their lack of empathy and understanding, I couldn't resist posting this:

http://www.cnn.com/2008/LIVING/personal/06/18/o.empathy/index.html

How apropo!

Illness And Appearance

Illness and appearance can be a tricky thing, especially when you have an “invisible” disease.

But I wonder where people get off thinking that they can make comments about my appearance.

Now I’m not talking here about compliments – real, actual compliments – feel free to keep those coming.

I’m talking about people that say things like, you look so much better than you did the last time I saw you, or you’re face is looking much better than it was, or you’re looking less bloated today.

I wonder how these people would feel if I said something like this to them.

Wow, I see you’ve managed to remove your head from your butt.

Now really, I would never say that. But sometimes I really want to.

I really don’t think that the (un)sick would appreciate a comment like, you look better than you did the last time I saw you.

But since I’m sick, it’s okay to make comments like that. Because I don’t have my health, I don’t have any feelings either?

I think it’s funny. These backhanded comments don’t come from people I see all the time, but ones that I see every few weeks or months. It’s like they think they know me or something, or know what I’m going through. But this is kind of impossible since they rarely see or talk to me in the interim.

And believe it or not, I know how I look. I went through the sweat pants only phase, through the my face is so bloated I would rather not leave the house phase.

I don’t insist on reminding these people of their insensitivity or idiocy, so why do they remind me of my personal failings? I know, it’s pretty crazy that I left the house sometimes looking the way I did or admitted that I hadn’t gotten dressed in the dark.

But in life, we have to take the good with the bad, and that includes appearance, too!

A Letter To Lupus And Rheumatoid Arthritis

Dear Lupus and RA,

I just want you to know that you are really driving me crazy right now.

RA, it gets 20 degrees cooler and you’re on my butt like the cold weather is my fault. Actually, it has nothing to do with my butt, but my stiff, aching joints, especially my knees and thumbs, are wishing you would go away. If 60 degrees is any indication of your renewed power, I can’t wait for winter to come…

And Lupus, what can I say to you? You’ve decided it was time for the fatigue to kick in again. Fabulous. Just great. You pick the best times.

And together, the two of you, who I am sure are working in tandem against me, destroyed a perfectly good, much needed night of sleep. First, I couldn’t sleep on my right side, because that pain was back, as well. Then came the ever-enjoyable anxiety attack that you give me from time to time – my stomach starts to hurt, my heart starts to race, it’s hard to catch my breath – because you make me think about the future.

Is this the way my life is always going to be? Is it ever going get better?

Are the new, weird symptoms I’ve been having lately something to be worried about, or just another part of your twisted mind and body games?

And where the heck are hydroxychloroquine, cellcept, and the meager remains of prednisone? I didn’t think I was on this stuff for nothing. But lupus and RA, you have succeeded in diminishing their effectiveness.

I hope you’re happy, because I for one, am not!

Leslie

Tuesday, June 17, 2008

Revenge Of The "Lupies"

Sorry all, but this appears to be the day of rants.

Recently, I have seen the term “lupie” used a lot. This refers to people who have, what else… lupus.

Where did this term come from? (I don’t know)

If this is another invention of the medical profession, like “rhupus,” I hope they don’t think they are being cute!

To me, this term is demeaning. It seems to take away the seriousness of the illness. When I hear “lupie,” I think of “loopy,” and we can all venture to guess that, that is not a positive association.

And it’s not like there is a difference in the length of the word.

Instead of saying, “I have lupus”, you say, “I am a lupie” (heard loopy). But probably very few people will know what you are talking about when you say the latter (assuming that they understand the former any better).

Why Is Research For Autoimmune Diseases So Under-funded?

I’ve been talking to a lot of people recently, many with lupus, and a similar story seems to emerge. We are on medication and we don’t necessarily feel that much better than we did before we started taking it.

Why is this? Maybe because there hasn’t been a new drug produced specifically to treat lupus in nearly 4o years.

I wonder if instead of having cancer, Tony Snow or Ted Kennedy, or any other popular politico, had lupus (not that I wish illness on anybody), if we would see an increase in research funding.

On the other hand, I found out that Barbara Bush has lupus and clearly that has made a big difference in the cause (as in it hasn’t).*

So what do we do about it?

How many more have to die from a disease that they shouldn’t die from?

* This isn’t meant to be a political piece in terms of which side of the political divide I fall on. This is a commentary on the lack of research funding and just so happens to involve (sort of) the current administration…

To Heck With "Normal"

I think there’s still a part of me that’s hoping my chronic illness will adapt to my life, and not the other way around.

I’ve always had a hard time saying “no” to people and it’s especially hard when they don’t understand the situation, even if I’ll regret it afterwards.

It’s like when the woman called to schedule my Solumedrol infusions. She gave me a date and I suggested a different one.

She guffawed at this. Her comment back to me was, that’s two weeks from now. Why would you want to wait that long?

I’m a grad student, I told her. And that will be when all my work is completed. She said she understood. I think I was also hoping that the longer I put the infusions off, the less I would need them.

While I’m learning my limits, I’m also fighting against them. It’s stupid because I always end up exhausted or flaring. But maybe we need these types of lessons in order to accept the confines of our newly defined lives.

The new “normal”.

My illness isn’t going anywhere. I learn that every time it rears its ugly head. So I need to learn to deal with it.

But in a world full of “normals,” it’s hard to get people to understand that when you ask for a break, you’re not asking for special treatment, but rather, the treatment you deserve.

It’s like people offer band-aids to cover inch-long, gaping wounds.

Sometimes I think that I’ve finally hit the rebellious stage in my life. I didn’t rebel against the parental institution, so why not rebel against the medical one?

“Normal” girls my age carry makeup in makeup bags. You know what I carry in mine? It’s a survival kit of sorts. I have high SPF sunscreen, Tylenol, industrial strength hand sanitizer, and my medication. And in the back of my mind, I prepare for the day when the seemingly “normal” provisions are replaced with more daunting medical paraphernalia.

I hate the word “normal.” It is such a relative term. I think what they call steroids and immunosuppressives and DMARDs (Disease-Modifying Antirheumatic Drugs), should really be called Personality Altering Drugs. Because honestly, that’s what they do. And that’s what, at least my doctor, didn’t tell me about. And I don’t mean to be negative here, but if your illness doesn’t kick your butt, in one way or another, the medication will.

And you know what else?

No drug, no matter how powerful, can protect any of us from the outside world.

This post comes in response to another comment made about my face by my so-called friend. I used to have a lot of respect for this person, but no more. Can’t this person see the look I get on my face when the subject is mentioned? I wouldn’t be surprised by something like this coming from a kid, or maybe even an uninformed adult, but this person is supposed to be my friend. Friends don’t say things like that. And this person has some experience in the medical profession, so whether specific details were shared or not (which they were), I’m pretty sure this person could have figured out why my face looked the way it did without making a point of telling me about it.

This is one of those situations that I really don’t know how to handle. On the one hand, I’m pretty much ready to tell this person to jump on the first train out of my life. On the other hand, I want to try and be amiable. But that’s hard when my insecurities are so blatantly being thrown in my face. And clearly, shockingly, I am pretty sure that this person does not realize they’ve offended me. How that’s possible, I’m not really sure.

Maybe I’m being overly sensitive about this. But this is not the first, nor second, but the third time a comment has been made by the same person. My message to this person - You know, you have an axe to grind with modern medicine (in terms of medication use), go grind it somewhere else. I really don’t want to hear about it!!!

Monday, June 16, 2008

Michigan Shmichigan

I’ve been doing some research lately, and have discovered that there are no support groups in Michigan and no clinical trials. I find this hard to believe, as I can’t be the only one in the State of Michigan who has Lupus. This just doesn’t make sense.

Anyone know why this is?

Has anyone started their own support groups or anything like that in their respective states? If I wanted to, how would I go about doing this?

Thank You To All My New Friends

I just wanted to say thank you to all of the new friends I have made over the last several weeks. I can only contribute my influx of readers to my interview on Rosalind Joffe’s site, “Working With Chronic Illness.”

I really appreciate all of your thoughtful comments and hope you continue to read my blog.

Thanks for letting me know, once again, that I am not alone!!!

My Blog On "My Life Works Today"

I happened to be checking the blog, "My Life Works Today", and there happens to be a very nice (and unexpected) plug on there about my blog.

Check it out:

http://www.mylifeworkstoday.com/blog/?p=43

Thanks, Maria!

Sunday, June 15, 2008

Rhupus!

No, it’s not some teenage expression of, “that’s totally cool!”

Apparently it is an abbreviation for those of us who are lucky enough (and I believe it is pretty rare) to have both Rheumatoid Arthritis and Lupus.

Does anybody know more about this? If so, please let me know.

All Hands On Deck?

In the adventure of chronic illness, there is no hand holding. Unless maybe you are a child.

While there is no hand holding, there are no absolute truths, either.

Some doctors disclose everything. Some disclose nothing. And still others provide vague predictions of what’s to come.

On the first meeting with Doctor F, I was basically told that my life has changed in ways that even I haven’t anticipated yet. This wasn’t a proclamation of a death sentence, but it did not inspire hope, either. There was no glossing over the fact that not everything was going to be okay. It was the most honest anyone had been with me to that point.

Go out and do what you have to do to make your life livable.

If only it were that easy. If only I knew how.

Another Word About Randy Pausch

A while ago, I posted on “The Last Lecture” by Randy Pausch:
(see post "The Last Lecture").

In August, Randy was given three to six months to live.

That was ten months ago.

Sometimes when I see him on TV or the Internet, I think he can come across as kind of full of himself.

On the other hand, wouldn’t you be, too, if you had defied your doctors expectations?

I think most of us have the goal that we will prove our doctors wrong, that our illnesses won’t get the better of us, and that we won’t let the medical profession rule our lives. Sometimes that doesn’t quite happen. But then again, sometimes we can even surprise ourselves!

I think that Randy personifies the idea that having a positive attitude can get you through anything. I hate to say that, because on most days I’m guilty of not having one.

His story came at a time in my life when I was questioning everything, and I know it sounds cheesy, but I think he gave me something to hang on to. Whenever I’ve seen him, he’s living each day to the fullest, because his doctors have given him every reason to believe that each day could be his last.

It’s like that quote from “Grey’s Anatomy”:
“…If you knew this was your last day on earth, how would you want to spend it?”

I’ll let you all ponder that while I go ponder it myself…

A Word On Hope

I look at a picture from my 21st birthday, which was nearly two years ago. I see a person full of happiness and promise for the future, a person who had no idea of what was to come.

I don’t think my mind has changed, but my psyche has.

I mark the pages of my books with a bookmark I’ve had for a long time. It says one word:

Dream.

If I do not continue to dream, I do not have hope. And if I have no hope, I have nothing.

Now it’s about living, getting through the day. Everything else (extra) is an added bonus.

Thursday, June 12, 2008

One Step Forward, Two Steps Back; Or Is It Two Steps Forward, One Step Back?

Lately I can’t tell.

Right now I think I’m at a pretty good place illness-wise. I’ve been feeling better than I have in a while and it has definitely been a surprising (and much needed) change.

Although the price you pay for feeling better is that when you relapse or have a flare, it seems to hit surprisingly hard.

Anyway, the thing I’m contending with currently is my mood. It’s very up and down, and mostly, not the most positive.

I find that I’m reverting to anger a lot.

I seem to be asking why? about a lot of things, and I know that, that is the wrong question to be asking.

2mg And Counting...

As of today, I’m down to 2mg of prednisone.

Hopefully I will finally be able to shed the pesky few pounds that I’ve gained over the past few crazy months. They are imperceptible to everyone else, but to me, they feel like they might as well be 20. They are nothing to be concerned with, compared to a body that stands on the cusp of peril on a daily basis.

But they are just one of the many reasons that I am ready to say goodbye to prednisone.

Tuesday, June 10, 2008

Happy Birthday, E!

Today is my friend E’s birthday.

E is having a rough go of it right now and feeling particularly disillusioned by life. I just wanted to let E know that you are in my thoughts and everything will get better soon!

E is not a fellow member of the chronic illness world (thank goodness!), but has been a great friend to me and has supported me through good times and bad!

Here’s to you E, and a wonderful birthday!

What I Want People To Understand

I want people to understand that every aspect of my life is work.

Every move I make takes calculating.

If I do everything on my list today, I will pay tomorrow, or maybe even before tomorrow.

If I put some things off, I will have more energy today.

This is the constant calculation that runs through my head.

I’ve learned that at least for right now, cleaning and working out cannot take place in the same day. These two activities cause me to expend far too much energy. Grocery shopping has to be left on its own. So does walking up and down four flights of stairs three times to do my laundry. There are other activities as well…

Working out is something that might have to be taken off the list altogether. I mean, I walk everywhere, anyway. And while this would present its own set of issues, it may be something I have to consider doing, or rather not doing, for a while. At least as long as I’m putting in 40 hours a week at my job.

Once you have crossed the threshold into illness, there is no turning back.

It gets in there and it messes with your DNA. It flips a switch and causes an unstoppable chain reaction, a collision of body and illness that you never see coming.

And this can happen anytime, anywhere. A lot of us will say that we just woke up one morning and “felt different.” But the truth is, most of us can think back to signs weeks, months, and years earlier, when we thought something might not be “quite” right. But in the absence of any other signs, there was always a cover, always something it could be attributed to. Something that made it make sense.

It’s not just the pain of my disease that I seek understanding about. It is also the frustration that I feel. But no one who hasn’t had over 20 doctors appointments in the last eight months (not counting routine dentist, eye exam, etc. – if those can even be considered routine anymore), four major tests/procedures performed, and a host of blood work, can begin to understand the frustration that ensues when trying to keep life seemingly normal falls apart.

Making other people understand means having them accept who we are, illnesses and all. It means occasionally cutting us some slack, which for some reason, people are, as of late, finding it incredibly hard to do.

To clarify, this post comes in response to three things:
1. I am being pushed at work to take a class. And I’m seriously worried about it. I don’t know how else to explain it to the people involved, so I’ve resigned myself to quiet resignation. I’ve talked about this before. The class is one week long. It would be during work hours, but there is homework involved. This means that I would actually have to make some use of myself during the hours after work, when I usually make a half-hearted attempt to eat dinner and then spend the rest of the night on the couch – because I’m too exhausted to do anything else.
2. My next appointment with my rheumatologist was rescheduled. And this doesn’t mean that I had any say in the new appointment time. This means that I received a letter in the mail today telling me that my appointment had been cancelled and rescheduled and it informed me of the new date and time. Well the thing is, I will be in school, I will be teaching, and I don’t know all of the specifics of that schedule yet. I will have the part of my life that I want to worry about, to worry about. But because it takes so long to get these appointments in the first place, I think I am just going to have to sit back and deal with whatever “chaos” ensues. But I wonder if having no regard for my time is supposed to make me feel more like a person and less like a numbered patient. If so, not the way to go!
3. The general lack of understanding that seems to be a continuing theme in my life.

The Inside Doesn't Match The Outside

The other day as I was making my way down the stairs of my third floor walk-up, I glanced out the window.The sun was shining and it was truly a beautiful day.

What a sham, I thought!?!

The inside really doesn’t match the outside.

I was trying to make my way down the stairs, but my legs didn’t want to cooperate. Every step down the stairs was like a hammer hit to my knees, making me feel like at any moment, my legs were going to shatter into a million pieces.

I know, a third floor walk-up, not the smartest move for a person like me. But I moved into my apartment (not so) long before I realized what was happening to me. And I’m far too exhausted at this point to move.

But, you know, this disjunction occurs on a daily basis.

On the outside, I appear to be vibrant, young, and healthy. But on the inside, I feel old, broken, damaged.

The inside doesn’t match the outside.

Do We Really Fight Diseases?

I know that the concept of “fighting” diseases is merely a figure of speech.

But it is one that comes to define personality types in the world of illness.

Either you’re a fighter or you’re not.

But are we fighting disease?

Or are we really fighting ourselves?

I think many in the chronic illness world would agree with me that we don’t much often feel in control of our own bodies.

I don’t feel very much like I’m fighting a disease. I swallow down medication every morning and evening, at exact times, an exacting regimen. But that is not me fighting. That is the medication working. That is my doctor telling me what to do.

To me, fighting would be to put my foot down, not take the medication, and attempt to move on with my life.

But I have a feeling that I would prove the lesser opponent in that battle and I would not win.

But right now, I’m fighting the battle to survive, but that’s not really a fight, it’s reality.

Two Worlds

Essentially, those of us who experience chronic illness are caught between two worlds.
We are part of the world of the healthy and a part of the world of the sick.

For some, it is easier to inhabit the world of the healthy, for others they only inhabit that world in appearance only. And yet for others, they have been forever robbed of their chance to live, but even for a moment, in that world.

And most all of us join the world of the sick unwillingly. And one day we find ourselves fitting in better with “that” crowd. They relate to us. They understand. They are our lives personified.

We crave to be part of the world of the healthy, but we know we fall short on expectation.

And when we feel we don’t fit in either world, it is often easier to inauspiciously reside in our own heads.

It is loneliness, at its most painful and most useful.

Monday, June 9, 2008

"Coming Out"

I was reading an article entitled, “Coming Out: Considering the Closet of Illness” when Rosalind sent me the link to the interview.

Ironically, I hadn’t known what she was going to title the post.

If you have access to articles databases and stuff, you should check this out! It is very insightful. I happened to stumble upon this article at work, while I was searching for articles for a project I’m working on, on chronic illness, social support, and the life course.

I’ve provided the reference below.

The article discusses something that I’ve been thinking about a lot lately.

Disclosure.


The harm of disclosing the fact that you have an invisible disease is that the person or people you are telling probably do not realize that anything is wrong with you and this can lead to them viewing you differently.Obviously, you run this risk any time, but there is more likely to be a divided reaction when this disclosure is completely unexpected.

I know the way I’ve felt over the past few weeks, having to tell near-strangers about my illnesses. It is both a blessing and a curse. It is a blessing when you disclose to someone who attempts to understand. It feels like a weight has been lifted off of your shoulders. It is also a curse because you are baring yourself so completely to people who would, under different circumstances, not necessarily deserve such outright honesty.

I am a heterosexual woman, so I have never had to deal with the experience of “coming out” as homosexual. But I think the metaphor of likening the disclosure of ones illness to others to the admittance of homosexuality is a profound one.

Both deal with a profound sense of putting oneself on the line with the possibility of outright rejection.

I know that for some, even talking about their illness in the virtual world would be unthinkable. For me, though, it seems to be the release I need, that I can’t often get “in real life.” It’s a difficult distinction for me to explain.

But if you reject me for my illness, you reject all of me. Only recently have I become brave enough to stand up and say that this is for real. And that if being true to myself means disclosing, even when I run the risk of rejection, so be it. If I can’t accept what’s happening, no one else will be able to.

It is truly sad for any group of people that goes through something like this that we live in such a world where difference is so blatantly unacceptable.
*****
(Myers, Kimberly R. “Coming Out: Considering the Closet of Illness.” Journal of Medical Humanities 25(4): 255-270.)

"Working With Chronic Illness" Interview

I did an interview with Rosalind Joffe for her blog http://workingwithchronicillness.com/. You can read the interview here:

http://workingwithchronicillness.com/2008/06/09/coming-out-into-the-spotlight/

The post is entitled, “Coming Out – into the spotlight.”

Thanks, Rosalind, for letting me share my story with you and your readers!

"You Gotta Be"

“You Gotta Be” by Des’ree:

Listen as your day unfolds
Challenge what the future holds
Try and keep your head up to the sky
Lovers, they may cause you tears
Go ahead release your fears
Stand up and be counted
Don’t be ashamed to cry

You gotta be
You gotta be bad, you gotta be bold
You gotta be wiser, you gotta be hard
You gotta be tough, you gotta be stronger
You gotta be cool, you gotta be calm
You gotta stay together
All I know, all I know, love will save the day

Herald what your mother said
Readin’ the books your father
to solve the puzzles in your own sweet time
Some may have more cash than you
Others take a different view
My oh my, heh, hey

You gotta be bad, you gotta be bold
You gotta be wiser, you gotta be hard
You gotta be tough, you gotta be stronger
You gotta be cool, you gotta be calm
You gotta stay together
All I know, all I know, love will save the day

Time asks no questions, it goes on without you
Leaving you behind if you can’t stand the pace
The world keeps on spinning
You can’t stop it, if you try to
This time it’s danger staring you in the face
Oh, oh, oh,

Remember
Listen as your day unfolds
Challenge what the future holds
Try and keep your head up to the sky
Lovers, they may cause you tears
Go ahead release your fears
My oh my, heh, hey, hey

You gotta be
You gotta be bad, you gotta be bold
You gotta be wiser, you gotta be hard
You gotta be tough, you gotta be stronger
You gotta be cool, you gotta be calm
You gotta stay together
All I know, all I know, love will save the day

You gotta be bad, you gotta be bold
You gotta be wiser, you gotta be hard
You gotta be tough, you gotta be stronger
You gotta be cool, you gotta be calm
You gotta stay together
All I know, all I know, love will save the day

You gotta be bad, you gotta be bold
You gotta be wiser, you gotta be hard
You gotta be tough, you gotta be stronger
You gotta be cool, you gotta be calm
You gotta stay together
All I know, all I know, love will save the day

From the album, “Endangered Species

*****

Man, I am such a child of the late-80s and early-90s.

I’ve always loved this song, for some reason, and now it holds new meaning for me.

A Word On Invisibility

There is not a day that goes by that I don’t feel invisible.

Before, I think this feeling could be attributed to low self-esteem. But now, it really is about being invisible. It’s about being in front of people and them not really seeing who I am.

I think when people think of arthritis they think of something out of my nightmare from last week. They think of someone who is visibly disabled, with twisted appendages that no longer serve their intended purpose.

And people here about lupus a lot. It’s a condition thrown around on TV medical dramas all the time.

Every time I talk to one of my friends, that person tells me that lupus is the disease that “House” diagnoses every patient with at first. Yeah, every patient comes in with fatigue and muscle pain. What a joke. If lupus was actually that common, maybe people would actually understand it.

Saturday, June 7, 2008

(Un)Reality

You know, thinking back, there really hasn’t been an official diagnosis, literally or figuratively.

I mean, every time my illnesses have been presented to me (by Doctor C), it has been in a very casual manner, like talking about the newest movie or something. Well, not exactly, but you know what I mean.

I’ve never gotten that stern we have to talk type of conversation. Only blurred explanations, a lot of which I’ll admit that I don’t understand. T Cells and B Cells, DNA, and foreign invaders (oh my!). I suppose it’s stuff pretty common to a conversation about the immune system, but it’s a lot of stuff I thought I only needed to know if I was considering a career in medicine. And there is definitely no mention of statistics. Give me percentages, something that I might understand. What are my chances here, doc? Through me a bone, would you? But we don’t do things by the numbers. I’m not actually sure how we do them.

Your immune system has gone haywire. But this medication will swoop in and defeat your overactive T Cells.

It’s like the medical version of a comic book superhero tale.

And apparently the doctors and the medicine are the heroes in this story, not me.

I am supposed to remain a passive actor while my body, the doctors, and the medication, not I, do the dirty work.

Well, I think it’s about time that I faced reality. I’m starting to realize that it has been so hard for me to do because in some ways, I don’t think Doctor C has really been able to face reality, either. When I go to my appointments, Doctor C is only seeing an incredibly small snippet of what my life is like. And I think telling me the whole truth would mean admitting that modern medicine isn’t perfect and that there are some things we aren’t going to be able to fix. But doctors would never admit to that, would they?

But that’s what I need. I need someone to be honest with me and tell me that my life is not going to be perfect, but it’s going to be livable. You know, I forgot about fixating on perfect months ago. That’s not what I’m asking for. But I need to know. Otherwise I am led to have unrealistic expectations about my doctors’ (and modern medicines’) capabilities.

The other day when I was really feeling bad, I accused my medication of not working. But the thing is, I don’t know if that’s really true. It might be doing the best that it can. Heck, all I can expect of myself everyday is to do the best I can. That’s all we can ever expect of anyone…

But what if our best isn’t good enough?

Peer Pressure, Sort Of

Lately I’ve been hearing about all the great things my friends are doing – running marathons, getting new jobs, moving to new cities, writing articles and books - and then there’s me, trying simply to survive.

I used to run circles around my competition. Now I fear that they run circles around me.

I’ve always been a competitive person, mostly with myself. Always pushing myself harder, faster, and farther. But I can’t do that anymore. Well, I can try, but I have a feeling that the outcome won’t be a very good one.

And it’s not exactly that I can’t, it’s that I don’t have the energy to.

The worst part is not necessarily that I can’t go out and run a marathon tomorrow like some of my friends can. It’s that I’m jealous of their ability and frustrated with my inability.

Maybe this is all some strange sort of mind game. If you asked the people around me if they noticed anything, they’d probably say no, except that I’ve told them about what has been going on.

So, is this just self-imposed doubt I’m suffering from, or am I really behind the curve?

Or, do I have to throw “that” curve out the window altogether and figure out my own? Forge my own path, a shortcut through a never-ending maze. Just like the fact that I was on my own growth chart pretty much my whole life because I was born severely premature. But that’s a whole other story.

"Falling Slowly"

“Falling Slowly” by Glen Hansard:

“I don’t know you
But I want you
All the more for that
Words fall through me
And always fool me
nd I can’t react
And games that never amount
To more than they’re meant
Will play themselves out

Take this sinking boat and point it home
We’ve still got time
Raise your hopeful voice you have a choice
You’ve made it now

Falling slowly, eyes that know me
And I can’t go back
Moods that take me and erase me
And I’m painted black
You have suffered enough
And warred with yourself
It’s time that you won

Take this sinking boat and point it home
We’ve still got time
Raise your hopeful voice you had a choice
You’ve made it now

Falling slowly sing your melody
I’ll sing along”

From the soundtrack of the movie, “Once

*****

I think this song is absolutely beautiful, the words and the music. I’m especially struck by the second to last two verses.

Friday, June 6, 2008

Run Down

I don’t know what’s come over me, but I feel as if I’m moving in slow motion.

I feel like I’ve stood in front of a firing squad. They fired a round of blanks and plastered me against the wall. Now I’ve got to peel myself off.

It’s like I took five very large steps back over night.

I fell asleep on the couch. Then I got up to go to bed. My muscles were weak and they felt like they had been injected with lead. All 90-something pounds of me were useless, dead wait.

Why I insist on dragging myself into bed, I’ll never understand. It’s something about routine, I guess.

Lately, I know why I flare. But right now, it’s like I’m back to where I was in October or December.

There’s nothing to explain this sudden onslaught of symptoms. I have a cold/sore throat that seems to come and go as it pleases.

The only thing I can contribute all of this to is the fact that I’m working 40-hours a week. The thing I can’t make any sense of is why sitting in a chair is so damning to my fragile immune system.

Not only do I feel exhausted, but I also feel run down.

Blog, Blog, Blog

I have to stop blogging before work because I always lose track of time.

I haven’t been late, but I’m always rushed. And lately, slow and (attempting to be) steady are my middle names.

I can’t blog after work because I’m too tired.

Last night, I ended up falling asleep at like 9 o’clock.

Working a 40-hour a week job is yet another example of the imperfect science that is my life. I’m putting in 40 hours at work, but getting nothing done at home. And when I say nothing, I literally mean nothing…

Labyrinthitis

So early last night I was doing research for a project and I guess I had never wiki-ed lupus before (oddly enough). And not that I’m suggesting that Wikipedia is the end all, be all of information, but…

Well, well, well.

I was looking at the symptoms they listed for lupus and…

BOOM!

Autoimmune inner ear disease (AIED).

What the heck is that, you ask? That’s what I wondered too…

BANG!

Labyrinthitis.

Okay, I guess that’s not much clearer.

Well, it’s the very thing that I was told caused my episode of vertigo nearly two years ago.

Now the pieces are starting to fit together.

Apparently, AIED is very, very rare, as in an incidence rate of less than 1%.

But nothing about this experience has been typical. Then again, it never is.

I know I’ve been obsessed with this, but I knew that it was related somehow.

So, what to do with this information? I guess it’s mine for posterities sake!

I, the ever-defiant detective, solves the mystery… again!

"Spoon Theory"

A loyal reader provided this:

www.butyoudontlooksick.com/the_spoon_theory

It’s very insightful and relates to several of my recent posts.

I particularly like “spoon theory” because it seeks to show those who don’t understand that every aspect of my life is work, even the aspects that I used to take for granted. Maybe the next time someone wants to accuse me of trying to take it easy, they’ll realize that I used up half my "spoons" before I even left my apartment this morning.

Thanks, Dan!

Thursday, June 5, 2008

It's All In The Delivery

Yesterday I was talking to a friend who told me something that I hadn’t realized. This friend told me that I’m too nice to people when it comes to their not understanding my situation, and that there’s no reason not to be firm with people in order to get my point across.

You know, when I’ve thought about people not understanding, I’ve wholly attributed it to their inability to commiserate with something they haven’t experienced themselves.

But what if my delivery has been all wrong?

What if I’ve failed in getting the severity of my situation across to people?

Because most everything in my life appears normal, so it shall be.

"Hey, Hey Hockeytown"!!!

I couldn’t pass up the opportunity to congratulate my home team, the Detroit Red Wings, for being the 2008 Stanley Cup Champions.

This is the fourth time in eleven years.

“Pain Is Not An Acceptable Excuse, Nor Is It A Badge Of Honor”

Yep, that’s what one of the commentators said just at the start of the sixth game of the Stanley Cup Finals last night.

In the world of hockey, that might be true, but what about in the world of chronic illness?

These players knowingly put their bodies through the ringer – for the sake of money, fame, career – whatever their reasoning may be.

Others of us are prisoners to our own bodies for crimes we didn’t commit.

Wednesday, June 4, 2008

The Secrets We Keep, The Lies We Tell

Alright, it’s confession time…

- Last year I had an “episode” that I never told anyone about. And now I’m forced to wonder if it was a foretelling of things to come, of a body gone haywire, an immune system on attack mode.

One morning, I woke up and I felt weird. A little nauseous, a little dizzy. But the worst part was that I couldn’t focus on anything, couldn’t think. I attempted to read e-mails, but my mind couldn’t process the words. I tried to watch TV, but it was like the people were talking in a foreign language.

Could it have been a massive episode of brain fog so common amongst lupus patients?

Something worse?

- I can’t maneuver my arms to close the back of hospital gowns. I’ve never bothered to ask for help. They’re usually so big, anyway, that they can go at least fully around me without needing to be closed.

- I have a hard time opening prescription bottles, so I have to ask for the non-child proof kind. But it embarrasses me to have to ask. It makes me feel like less of a person.

- I’m not sure if I know what I’m doing with my life.

- After the first connective tissue tests came back positive and my first primary care doctor sent me for more blood work, I cried in the lab chair the whole time.

The lab tech perceived this as nervousness toward the impending needle stick. By this time I had already become desensitized to this caveman type ritual.

I told her to go ahead.

It was more of the fact that I couldn’t believe I was sitting in the chair, facing so many unknowns, with nowhere to run and hide. I’ve never told that to anyone.

And you know what else? I’m not sure I’m much different than that girl sitting in that chair eight months ago…

- You know, I’ve talked a lot about how so often, it’s people in their prime who are struck down by autoimmune diseases. And I’ve gone as far as to suggest that I am one of those “prime” people.
What if that’s not true?

My new RA/SLE/sick/ill persona would seem to suggest otherwise.

- You know, I’ve been thinking, and I think that at some point in all of our lives, to some portion of our social circle, we are posers.

We act like those around us. We pretend we are people we are not. We appear as happy and healthy, when in fact, that combination of identities couldn’t be further from the truth.

The sad thing is that society has made us feel compelled to do this at all.

It’s dishonest. Not only does it cheat those around us out of knowing who we really are, it cheats ourselves.

Some of us hide more. We have more to lose, so we have more to hide in order to protect ourselves from the loss that would ensue.