Am I Enough?

Sometimes I feel down about myself.  In the past, a lot of it was related to being sick.  But as other things have happened in my life, there are other reasons why I feel down.

When you’re applying for jobs, which can be a demoralizing experience, it can really hurt your self-esteem, and the struggle has definitely hurt mine.  I try really hard to stay positive, but when it seems like a lot is going wrong in your life, it’s hard.

After spending two and a half years in New York, it sort of feels like a failure that I couldn’t make it work.  Even though I tried really hard.  Being back in Michigan is where I know I need to be.  For some people, New York is the center of the universe.  It’s the only place that some people can imagine being.  But it just wasn’t for me. 

It’s easy to listen to the negative comments and let those be the ones that keep coming up in our minds, even when there are positive ones, too.  I don’t know why it’s so easy to focus on the haters when it is often hard to listen to compliments and praise. 

This includes blogging.  I love getting positive comments about posts.  But sometimes the comments that stick out the most are the ones that tell me that I’m not doing something right. 

I’ve been struggling.  I’ve had a lot of change in my life over the last few months and years.  And while I am lucky enough to be surrounded by love and support, some of what resounds in my mind are the comments from those who aren’t coming from a place of love and support. 

And this hurts, even when I know that the comments have no merit and are completely untrue. 

And sometimes, when you rely on others to build you up, and they don’t, you’re only left with the negative.

But having gone through everything that I have, and being able to come out on the other side, I know that I am better and stronger than some people make me out to be. 

And I need to surround myself with the people that love and support me, and try and squelch the negative as much as I can. 

The thing that’s important to know about me is that I speak my truth and I own it, and I’m sorry if that truth is not acceptable to others.  But it’s mine, and I don’t shy away from it.  Sometimes the truth hurts.  And sometimes, the truth can set you free. 

So as I sit here grappling with my truth, I also grapple with the question of Am I Enough?

I’m beginning to realize that just because I wasn’t enough for one person, doesn’t mean I’m not enough for anyone. 

And if you’re grappling with whether or not you are enough because of the struggles you are coping with, you are.  You have to believe that.  You cannot let the negative win over the positive. 

I’m trying really hard to work on this myself. 

So the answer is:

Yes, I am enough.

Taming The Chronic Illness Monster

This post comes out of the post by Maria of My Life Works Today! titled “Paying Attention To My Lupus Road Signs In January” and the post “We make our own monsters” by Duncan Cross.

In Maria’s post, she talks about the sun’s impact on her lupus and how she has to listen to her body and take the sun in gradually.  Duncan’s post talks about some of the social and environmental factors that may have contributed to his IBD.

I’m not really doing justice here to either of these two posts.  They were definitely thought provoking for me in thinking about my own illness experience.  And that’s what I want to share here.

I have been under a lot of stress lately.  It’s crazy when you are trying to finish writing your dissertation and solidifying plans for the future.  And in all this craziness, it takes me back to when I was writing my senior honors thesis at the end of my senior year of undergrad. 

And I’m hit with the reality that my body is not going to be able to do the things it did then.  That was six years ago, but it feels like it is light years away.  I’m not the same person I was then, for a lot of reasons, but mainly because I wasn’t sick, or at least I didn’t realize it at the time (more about that later in this post). 

The reality is, I cannot do what I did when I was writing my thesis.  I can’t stay up until 3 a.m. working.  As much as that was unsustainable then, it’s even more unsustainable now.  To the point where it can’t be done.  Or I won’t be able to function.  Really. 

The truth of the situation back then was that I was sick but didn’t know it yet.  I didn’t do a very good job of listening to my body.

I’ve told this story a lot, but I’m going to tell it again.  During my senior year of undergrad, I had strep throat several times, pink eye several times, and several yeast infections.  We’re talking not a normal amount for someone at that age.  But it didn’t raise any red flags.  I got antibiotics each time and those ailments would go away, although only temporarily. 

There were some other things that happened at the time, that I didn’t talk about then, and are hard for me to talk about now, because they make me feel like an idiot, like I should have known that something wasn’t right with my body, but I didn’t pay attention.

Like everything else, I attributed it to the stress of finishing college, applying to graduate school, and writing a thesis.

At some point, I noticed that when I sat with my knees up for a significant length of time, they would lock, and it would be extremely hard and painful for me to unbend or fully extend them.  I also woke up one day and I couldn’t think.  Like I tried to read e-mails and I couldn’t comprehend what I was reading.  And I put on the TV, but it sounded like the people were speaking a foreign language.  I know, it sounds crazy.  And at the time, it did scare the shit out of me.  But I didn’t do anything about it because I didn’t know how to talk about it.  Since it only happened one time and never happened again, I thought it was a fluke.  Like I said before, I thought it was just stress.

But to anybody who knows anything about the immune system, this probably all spells trouble, and a lot of it.

But things are different now than they were then.  Then, all I cared about was school.  I felt invincible.  Now, my priorities have changed.  There are other things in my life, other people. 

It’s hard to look back at what you thought was the calm before the storm, only to realize that the storm was already brewing, it just hadn’t made landfall yet. 

But I can’t live forever wondering why this happened to me.  Or what caused it.  Or if I could have stopped it.

I don’t know what the trigger was, and I’ll probably never know.  But there was the crazy episode of vertigo I had, which I think was a precursor symptom.  That should have been the red flag, but even that wasn’t.  Because all of these things weren’t happening at the same time. 

I agree with Duncan that so often we are blamed for our own illnesses, and it shouldn’t be that way.  Something set these events into motion, whether they happened while I was young or only more recently, it doesn’t really matter. 

Those who forget the past are doomed to repeat it.

I can’t change the past.  I can’t make red flags out of disparate occurrences. 

I missed signs then.  How do I make sure that I don’t miss them now?

I don’t want to be hyper-vigilant.  And since I’ve been off of immune-suppressing drugs for a little while now, I don’t have to be quite as crazed as I was before.  But I also don’t want to miss warning signs. 

I think for most of us, the primacy of illness in our lives ebbs and flows.  For me, right now, the key is finishing my dissertation, and this seems to be coming before my health.  What I mean to say is that I’ve been feeling okay lately, relatively speaking.  But I wonder how much or how little of a place I feel illness has right now is simply in my head.  It hasn’t really changed, it’s just that my priorities have.

But this worries me.  As I suggested above, when I was writing my thesis at the end of undergrad, everything was put aside in favor of that project.  And in the end, it is probably one of the things that brought out my illnesses.  Although the reality is that I was sick before that point and just didn’t know it. 

So how do you find balance in a life that is filled, not only with illness, but serious duties and commitments?

For me, it’s managing stress.  My stress level has been pretty high lately and my mood pretty low, so I need to work on decreasing the former and increasing the latter.  And the bottom line is, these are things I can control.  I can’t control my illnesses, but I can control my attitude.

So the moral of the story is to listen to our bodies, to pay attention to the signs.  The other moral of the story is that these illnesses are spurred by something in our environment, although we may never be able to figure out exactly what it was that these events into motion. 

I’m trying to find balance as I push through one of the most difficult experiences of my life.  Writing a dissertation is hard work, and writing a dissertation while working within the constraints of multiple chronic illnesses is even harder.

But in some ways, maybe these self-imposed/illness-imposed restraints will actually be really helpful.  Maybe that’s the lesson here.  In the past, I have done a sucky job of listening to my body, and it literally led to my undoing.  Now, when my body speaks, it also forces me to listen.  I wish that lesson could have been learned some other way, but I’m not sure I ever really would have gotten it unless my body hadn’t said STOP!  This is too much.   

I’m truly grateful for the opportunities I’ve been given, and I’m trying to finish my PhD strong.  I know I can do it.  I just have to be patient with my body and respect its limits.  If I can do that, I’ll be the one to reap the reward in the end. 

“I Coulda Been A Contender”

No, this is not some freaky ass rheumatoid arthritis contraption.  It's gloves for kickboxing.

 

 

I’ll admit it.  My last post was kind of down in the dumps.  And it was two weeks ago.  But things have changed.  Why?  Because I had to get off the couch.  I go through these phases, especially as the weather changes and my pain increases.  My couch becomes my own private island, with everything I need on it.  TV remote control, reading material, blanket…

But I can’t, and wouldn’t want, to stay on the couch forever.  So…

Coulda.  Woulda.  Shoulda.  But I didn’t.

And that’s not what I’m going to focus on.

If I were my coolest friend, this is what I would say to me right now: “WTF, biatch?  You are a contender.  YOU ARE A CONTENDER.”

And if there’s one thing that you know about me – although there is much to know – it’s that I don’t like feeling sorry for myself.  Because inevitably, in a pity party, it is only ever a party of one.

So often in dealing with chronic illness, it’s so easy to think about and lament our limitations.  We mourn all of the things that we cannot or are no longer able to do.  It is a much more positive, albeit more difficult task, to focus and capitalize on all the things that we can do.

In the last two weeks, two people that I went to high school with have died from drug overdoses.  This profoundly saddens me.  25 and 27 are far too young ages to die at.  But the thing that frustrates me the most is that, on some level, these deaths could have been avoided.  Of course, I don’t know what was really going on the lives of either of these people, and I don’t think we ever fully know what is going on in someone else’s world. 

But here we are.  Legions of chronically ill people, fighting everyday to get the most that we can out of the lives we have left. 

I think sometimes illness takes us out of life a little bit, along with taking the life out of us.  We feel like we are less, will be less, and will achieve less than our healthy counterparts.  But you know what?  I see a lot of healthy people around me doing a lot of stupid shit.  Stuff that certainly doesn’t make them a contender for anything other than the award for being an idiot.

I know, I’m being judgmental here, and not very congenial.  But the one thing I don’t ever want anyone to say about me is that I sat around and wasted my life – not because I was sick, necessarily – but because I was afraid of getting hurt or being let down.

Because the reality is, if you take yourself out of life in a metaphorical sense, you might not get hurt, but you won’t get loved, either.  And that is profoundly sad.

Maybe it’s the kickboxing.

Maybe it’s the hot pink feather in my hair.

The other day in kickboxing I was working with one of those resistance bands and I broke it.  Not sure how I managed that one.  I think my instructor was as surprised as I was. 

I don’t know exactly what it is.  But there’s going to be a sea change.  I can feel it with every fiber of my being.  It’s bubbling, right at the surface, ready to explode. 

Because for the first time since I got sick, and maybe even for the first time in my life, I feel empowered.  I feel like I have the ability to make my life, and the lives of others, better.    

I’m trying to live my life to the fullest, and not get too down on myself about the mistakes that I’ve made.  I’ll admit it.  There have been many in the last few years.  But the biggest mistake, in life and in illness, has been not putting myself first.  It’s been putting everything and everyone higher on the list than me.  And I fear that this may be my ultimate downfall.  It’s a hard habit to break, and it’s not totally an unselfish one.  I want people to like me, dammit.

During my non-college school years, I was never one of the cool kids.  I was dorky and awkward.  But, oddly enough, since I got sick and found the amazing community of chronic illness bloggers, I feel like one of the cool kids.  It’s odd to think that through illness, I found my niche.  My people.  My home.

I am normally a glass half empty kind of girl.  But right now I’m choosing to look at the glass as being half full.  My life is different than I anticipated it would be.  But for right now, I think I’m finally where I want to be.      

There’s no telling what adventure I’ll be going on next.

Writing a memoir…

Making a documentary…

Getting a tattoo…

The “Rocky” Steps…

Skydiving…

Mount Everest…

The sky’s the limit.  There’s no stopping me now.

And as always, I hope that you will all be here, and join along with me for the ride.

Tie Me In Knots; I Won't Come Undone

“Our lives begin to end the day we become silent about things that matter”

- Martin Luther King, Jr.

I have the right not to remain silent. Hence, this post will emit all of the things and feelings I have been dealing with over the past few months.

Thanksgiving was terrible. Christmas was non-existent, and I already feel like the first days of 2011 have flown by without me noticing.

I’ve felt a bit guilty about not sharing recent events with my readers, but I didn’t want to seem like a complainer. And I didn’t know how to talk about it all in a coherent way. So this post may only be semi-coherent.

The last few months have been filled with more calls from doctors, doctor’s appointments, and tests than I care to remember.

I had more disagreements over appointments with the GI people, I had to contact patient relations again, and I was finally told by someone in GI that I wasn’t being treated properly and that the way I was being treated goes against protocol.

In between the other chaos, I got separate calls from my rheum’s and GI’s office telling me that separate labs had come back abnormal. I was taken off Methotrexate. I am back on it now, on a lower dose. That which does not kill you, right?

I also had a defecography and colonic transit test. While it’s amazing how comfortable you can become talking about the inner and outer workings of your gut, I’ll let you discover exactly what these tests entail on your own, if you so desire. I will say, however, that the colonic transit test is a weeklong commitment. And what a commitment it was.

I don’t know how people that have mainly GI symptoms associated with their illness(es) do it. It is exhausting, embarrassing, and disabling, not knowing how your body is going to react, and not being able to trust that it will work properly.

On the one hand, my life has been overwrought with health stuff. On the other hand, I have found myself on the other side of things.

I won’t say too much about the non-health stuff because it is not really mine to tell. But it has been like watching a speeding train derail, and not having any way to stop it. Now I know what it feels like to be in the position of those around me who have had to deal with my illnesses and have no way to really help me.

I’ve also learned that you never really know what is going on in someone else’s life or home unless they tell you about it. You can think that these are the happiest people in the world, and their lives could be falling down around them.

How much can one person take?

I wish there wasn't a before and after. I wish there was just life, and a life that wasn't always spiting and thumbing its nose at me

I have a feeling that this might be one of those posts that I look back to and shake my head at, wondering how I really could have been feeling this low. But right now, I am, and the only way I can really think to help myself is to write the hell out of it.

Honestly, I’m pretty convinced that these people don’t know their head from their butt, and given that they are GI people, that definitely isn’t a good thing.

And does it make sense to anybody that my two and a half day hospitalization was billed to my insurance as outpatient care, which meant that I had to pay for part of it?

I am also sick of living in a country where people who are down on there luck get no compassion whatsoever.

I didn’t really make resolutions this year. Mainly because what I would really like to do is go into bed, put the covers over my head, and not get out until all of this crap is over.

I am exhausted…already…physically and emotionally.

I ran into my GI doc at the hospital, on the way to my volunteer post, and she had no clue who I was. There was zero recognition. I have seen this woman many, many times. My rheum has recognized me “on the street”. This really frustrates me. I want to trust this doctor and what she has to say, but how can I? Her inability to recognize me makes feel worthless and invisible. It makes me realize that in the medical system, I am just a patient, a number. My personhood is in question. Because I am sick.

I’m sick of being the person that gets treated like crap, but takes it with a nod and a smile. That acts like it doesn’t bother me. Because it does. And now I want to rip everyone’s heads off at any chance I get. But I don’t. And I won’t.

I’m trying to get things under control. In the near future, I’ll be starting physical therapy for my colon. Not sure what this will entail, but needing it to work so that I can avoid surgery. My doc thinks that this is not related to my rheumatologic issues. How can it not be? I’m still searching for more concrete answers, and hoping they come my way very soon.

And I’m doing what I can to support those around me who are dealing with difficult things.

So that’s where I stand. And that’s the key thing. Despite being totally overwhelmed by things, I am still standing. I may be a bit worse for the wear, but I’m doing the best I can.

Shedding Illness Baggage, One Layer At A Time

“[…] Open me up and you will see

I’m a gallery of broken hearts

I'm beyond repair, let me be

And give me back my broken parts

I just want to know today, know today, know today

I just want to know something today

I just want to know today, know today, know today

Know that maybe I will be ok […]”

- “Be OK,” Ingrid Michaelson

I can’t believe it’s almost 2010. What a crazy year it has been. And in the spirit of the New Year, I’m going to make this post a confessional, well, I guess, more so than usual.

I had anticipated taking a leave of absence winter semester. A lot of this semester has been spent getting advice and making decisions. And ultimately, I won’t be taking leave from my PhD program after all.

There was just no way to secure both money and health insurance, and I can’t really afford to be without either. And the alternative, of having health insurance covered, but having to apply for emergency grants while waiting for my SSDI paperwork to be processed, was not really a viable option. I fear that this situation would have put far more stress on me than staying where I’m at and doing the best with what I’ve got. This decision hasn’t been easy. But the prospect of filing for Disability at the age of 24 makes me cringe.

This is something I wrote, anticipating taking leave, and I thought it was important to share:

I need some time to regroup, (re)evaluate my priorities, and take stock of all that I’ve lost and gained in the last two and a half years. Because right now, most of what I’m seeing is the bad. And a lot has happened in a very short time, but not all of it has been bad.

For the first time in awhile, I’m not making the safe choice. I’m not staying in a situation that makes me unhappy because it’s easier to stay than to go. I’m letting go of everyone’s expectations, including my own, knowing that I will come out stronger, more focused and more determined, on the other side.

A lot of people have said, but you want your PhD, of course you’re going to finish. But at this point, I’m not sure that will happen. If I find that I am so happy being outside of this environment, maybe I won’t continue. I do want to get my PhD, I want to finish what I started, but not if it is both physically and emotionally detrimental…

So I’m not going to sit here and make false promises that I will take a semester off and come back refreshed and renewed. The time away may give me clarity that I have to go in another direction. It’s easy for people on the outside to make suggestions and give advice, but until you’re in a graduate program, you don’t know how much of a life commitment it is.

So, I guess I’ll have to find my clarity elsewhere… Okay, so here goes the confessional:

1. The combination of a friend in the program dying and my own hospitalization made me realize that this is not the life I desire. And this is not an environment I will be able to thrive in, given my health issues. I think that this is something I had known for awhile, but that I wasn’t really ready to admit to myself. But now that I have, I feel much better about my future in the program, a future that will hopefully be constructed on my terms.

2. In my recent posts on marriage and children, I’ve come to realize that these parts of my life are going to be complicated by illness. I don’t need them to be further complicated by a job that doesn’t allow me the flexibility to have a life outside of academia. I don’t think this makes me traditional… or a failure… In fact, such “epiphanies” have taken a lot of the pressure off of me. I no longer desire to compete for the top jobs, fellowships, etc., because I know I can’t. And I’m okay with that. I’ve realized that having a family is more important to me than I may have let on, and that in order to make those things happen, I can’t be in an environment like the one I’m in right now.

3. I have these really disturbing dreams where all my teeth fall out. Or my hair falls out. And I realize that this is symbolic. These are visible signs of illness. I get scared because everyone seems to think that my hair is one of my best features. But hair falls out. Lupus can make your hair fall out. Drugs can make your hair fall out. Hair gets gray and white. Hair is transient. I want to be something more than my hair.

4. Along similar lines, I confess that I’ve saved every prescription bottle for the last two years. My therapist, who I admitted this to recently, assured me that this is a “normal” coping mechanism for me. And that he’s not concerned. He says I’ll get rid of the bottles when I don’t need them anymore, when I have the recognition that I’m seeking. I guess when my illnesses mean something to more than just me. But I’m really scared that I’m never going to get it… The bottles are the tangible embodiment of my illnesses. Because most of the time, I look fine. They are the only reminder that anything is amiss. Of course my friends and my family acknowledge what is going on. But I worry that none of them really get it. Yes, I am more than my illnesses. But I am also a different person because of them.

5. I hate to remember the look on my parents’ faces, when they saw me in the hospital for the first time. Or the sound of my friend’s voice on the phone, when she finally got to talk to me. There was fear, but there was also a sense of helplessness, that even I as the patient, did not have. I’m sure I looked and sounded half dead. I certainly felt like I had been put through the ringer. And what I fear the most is that this is only the first in a long line of hospital stays in the name of “complications from lupus.”

6. I’ve become so hell-bent on giving people second chances that don’t deserve them. I’ve convinced myself that I shouldn’t begrudge other people their baggage when I have so much of my own. But in the end, I’m the one who ends up getting hurt. And all I’m left with are lame platitudes that don’t mean shit. How’s that for honesty and openness?

7. I can’t listen to the song “I’ll Be,” by Edwin McCain, without crying. Literally, every time. And I haven’t listened to Eric Clapton since, well, you know…

In the past few months, I have experienced some of my lowest points ever. I have cried more than I think I have in the last 23 years of my life combined. And at this point, I don’t think there’s a place I haven’t cried (coffee shops, the grocery store, etc.). I’m okay with this, but I think that for some people in my life, it is cause for concern. I’d be more worried if I couldn’t cry, if I hadn’t shown emotion towards all that has happened. People have died, people have walked out of my life, I survived my first lupus hospitalization. And when I think of all that has happened, I cry, because I’m not quite sure how I’m still standing.

More than remembering the things that have happened, I have accumulated an immense amount of baggage. And I think it is all illness-related baggage because everything in my life is intertwined with it. Along with the baggage, there are also holes. Holes in my heart, holes in my life that I’m desperately trying to fill. It’s a strange combination to be trying to shed layers and fill holes. And to think that every time I get hurt, I can’t get more hurt. And then I do…

“Just Snap Out Of It”

While traveling through rural Michigan by train to visit a friend, I saw a billboard that made me stop and think. The billboard read, “You never hear, ‘Snap out of it, it’s just diabetes.’ So why do some say that about depression?”

After doing a bit of detective work, I discovered that this billboard is a part of a public service announcement from www.DepressionIsReal.org. Another reads, “You’d never say, ‘It’s just cancer, get over it.’” Heart disease is also an illness used as a comparison. The television spot suggests that heart disease is like depression because the symptoms can be ignored; it’s like diabetes because it’s biological, and like cancer, it can be fatal.

In theory, the purpose of this ad is useful – trying to gain the same kind of attention toward depression that other illnesses get. But to my mind, this falls on its face.

Now why do I say that? I say that because of what the ad fails to acknowledge. I find it interesting that what isn’t mentioned is that all of these illnesses; diabetes, heart disease, cancer (sometimes), and depression are invisible. To me, that is the crux of what makes many chronic illnesses questionable. But you don’t look sick. It’s all in your head isn’t a comment reserved for depression.

I think we have all encountered people who have suggested that we could get well if we simply put our mind to it, or those who suggest that we’d be fine if we only stopped taking our medication and exercised more, etc. I have, in fact, basically had people tell me something to the effect of I have a friend who has lupus and she’s perfectly healthy. Aside from the fact that this is a complete oxymoron, the implicit message there is that I should be perfectly healthy, too, even though I have lupus. So I think that to say that people that have “recognized” illnesses are somehow not asked to account for them is absolutely, positively untrue. In fact, I think people that have chronic health problems are asked to account even more, to prove that we are actually sick, and not just attention hogs or drama queens/kings.

This ad also resonates with me because it has been discussed a lot that sometimes there can seem to be a competition in the chronic illness community as to who has it worse. I completely agree that depression deserves the recognition that this ad is trying to garner, but I do worry that it could be taken the wrong way, and sends the wrong message, even with the most well meaning of intentions.

I think I’ve come to realize that the reason why this ad rubs me the wrong way, and also, why I’ve felt pretty down on myself lately, is because I think I have unconsciously bought into this “just snap out of it” mentality. I’ve tried to ignore the recent issues that have cropped up, to no avail. The problems have gotten worse, and now I have several appointments looming ahead of me, with uncertain outcome.

And the reason I’ve let these things go is because it’s hard to be on guard all the time. In fact, it’s exhausting. To have to question every hiccup, every irregularity, to have to wonder if this new symptom is just a fluke, or the beginning of the next stage of an illness, or the beginning of a new illness...When, according to medical definition, your body has gone terribly awry, the new “normal” becomes exactly the opposite. The new “normal” is where everything is abnormal.

So, if even we tell ourselves to snap out of it, of course the healthy people in our lives are going to be wont to do it, too. It’s easy to play that game. Oh, you’ll feel better if you don’t concentrate so much on being sick all the time. Really, is that true? Because in my experience, it is far worse to go in the other direction. Once you’ve let your guard down, it’s easy to leave it down, and to leave the world of illness behind, unfortunately to the detriment of your own health. One of my friends made a good point, though: If it’s not something normal if you were healthy, then you, of all people, should definitely have it checked out. And while this is sound advice, it’s intimidating, too.

I guess the point of all of this is that even when illness is staring us in the face, even when it’s written in two and a half feet tall letters, it doesn’t means it’s done right. And all of these reminders don’t make it any easier to deal with. I know it’s there, I know I’m sick, because my body keeps reminding me…

The Need To Disengage

May (which is shockingly half over already!) is both lupus and rheumatoid arthritis awareness month, which is a little weird for me since I have both illnesses. I’ve been busy and I haven’t had much time to blog, but overall, I’ve sort of felt the need to distance myself from being forced to think about my illnesses.

I’ve even found myself avoiding my daily onslaught of reading blog updates. Why? I think it’s because this whole illness deal has all become a little too routine. I really have felt like I’ve been dealing with this for years, decades maybe.

Hmm…where do I begin? Let’s see… Parts of my life have become totally cliché and often seem akin to an after school special. How’s that for a one-sentence recap?

Things in my life have been weird lately. I recently started taking anxiety medication because, well, my life was kind of out of control. Everything felt overwhelming and I was in what can only be described as a constant state of “wigging out.” I was constantly on guard, waiting for the next disaster to strike.

I think my more relaxed self has become a bit snarky, maybe even too snarky for some people. But you know, I’m okay with that. Snarky is much better than drab, melancholic, depressed, unhappy, fatalistic – you pick the adjective.

Certainly, I’m not thrilled to have added a new medication to my ever-expanding repertoire. The downside to this latest development is that there are more side effects that I have to worry about and pay attention to. But all in all, I’d say that this was a successful move on my part. And I have a feeling that if you knew me in person before and saw me now, you’d say I seem more “chill” than I did before (at least I hope you would).

More than anything, though, this experience has made me realize that I need a vacation. Then I need to come back and become re-engaged. While I think that an occasional dose of escapism can be helpful, full on escapism can be detrimental. I need to be in control of things that I do have some modicum of control over.

Last year was so completely and utterly consumed by illness because I knew nothing else. I was walking around in pain, sick all the time. In some ways, it’s hard for me to reflect on that time because I’m really not sure how I made it through.

It’s funny when you start writing a blog post and then reality sets you straight. I’ve become adept at knowing that I have a certain window of time for each medication I take that I can flub up and still feel okay. I’m not running to my rheumatologist every time a new symptom crops up. I’m feeling more independent. And while all of this is true, yesterday I was hit by a flare that seemed to come out of nowhere. The nausea that ko-ed me on the couch in the morning didn’t clue me in. The unbearable fatigue that caused me to nap for two and a half hours didn’t either. It wasn’t until I woke up from the nap and my whole body was in pain to realize that I was flaring. And this is a bit frustrating because it makes life difficult – the lack of spontaneity that being chronically ill allows is something that I am still struggling with.

It’s times when I am caught totally unaware by a flare that I am socked back into reality, that I realize I can’t ignore my illnesses. It’s funny because I was never spontaneous before and it didn’t bother me. It’s like one of my favorite songs says, “Don’t it always seem to go/That you don’t know what you got till it’s gone.” But anyway, now that I have things and people in my life, reasons to be spontaneous for, it’s frustrating when I can’t be. And it’s conversations about that, which I dread. Where do I begin? How do I make someone understand that I can’t be up until 3 a.m., no matter how much I want to be? How do I explain that I look healthy, but that a lot of times, my immune system is wigging out? How do I get them to understand the connection between my physical and emotional pain? And how do I explain the disconnect between the two that sometimes occurs?

There are a lot of people in my life as of late who refuse to talk about issues. And at some point, the viability of each of those relationships is going to come into question. And in some ways, I think this is sort of a smaller version of the way my entire life is right now. At some point, I’m going to have to full thrust, grab my life by the balls and look at it for what it is. Just like these relationships are going to have to get unzipped and opened up, or thrown out. I’m going to have to get unzipped and open up to myself.

At some point, I will have to have the internal conversation with myself that goes something like Yo, Leslie. You have lupus and rheumatoid arthritis. Life is doable, but you have to acknowledge lupus and rheumatoid arthritis before they are breathing down your ass and knocking you off your feet.

Quite honestly, this conversation scares the hell out of me, because I know that not only am I going to lose a part of myself with this admission, but by trying to explain my illnesses, I’m going to lose others, as well. And I know I shouldn’t want people in my life who are going to bring me down or refuse to understand, but I’ve acted thus far as if these conversations don’t need to happen; that relationships wouldn’t have to change and that life would be easier by avoiding the subject altogether. Now I know that’s not true…

The question is no longer Do I stay or do I go?, because quite frankly, that’s not an option. It also isn’t whether these illnesses stay or go, because I’ve got them, so now I have to deal with them. The question is whether I live my life with illness at the forefront of my mind and get so bogged down that I can’t think about anything else, or whether I live well with certain constraints and hope that the people I decide to surround myself with attempt to understand and are willing to accept that this is the way my life has to be. Because clearly, avoiding the subject altogether is neither healthy nor productive. In fact, it’s just plain stupid.

I’m not going to lie and say that on the really bad days I won’t disagree with every word I’ve written here, because I probably will. But the first step in getting your shit together is admitting that you don’t have it together at all.

I can’t say right now when these conversations will happen or the form they will take, but I hope that the people they need to happen with can handle them. Sometimes I think we all need to take a step back, disengage and re-energize, in order to get back in, reengage, and face reality head on, no matter how hard reality is to face.

Learning To Stand On My Own

“Oh, why you look so sad? Tears are in your eyes […]

Don’t be ashamed to cry, let me see you through

Cause I’ve seen the dark side too.

When the night falls on you, you don’t know what to do,

Nothing you confess could make me love you less

I’ll stand by you, I’ll stand by you, won’t let nobody hurt you,

I’ll stand by you.

So, if you’re mad get mad, don’t hold it all inside,

Come on and talk to me now.

And hey, what you got to hide? I get angry too

But I’m a lot like you.

When you’re standing at the crossroads, don’t know which path to choose,

Let me come along, cause even if your wrong

I’ll stand by you, I’ll stand by you, won’t let nobody hurt you,
I’ll stand by you”

- “I’ll Stand By You,” The Pretenders

*****

“When the daylight’s gone and you’re on your own
And you need a friend just to be around

I will comfort you, I will take your hand

And I’ll pull you through, I will understand

And you know that

I'll be at your side, there’s no need to worry

Together we’ll survive through the haste and hurry

I’ll be at your side

If you feel like you’re alone, and you’ve nowhere to turn

I’ll be at your side”

- “I’ll Be At Your Side,” The Corrs

*****

I’d be lying if I said that this hasn’t been a difficult couple of months. Nearly four months ago to the day, my cousin died from radiation-induced dementia, a cousin that I had become close to because, as I’ve said before, we were “partners in illness.” This weekend was his daughter’s Bat Mitzvah. I went home to “celebrate,” but it was difficult. I know that Jeff was the type of person who would have wanted the party to happen, but it was hard to celebrate when there was such a deep void.

My cousin Cindy (Jeff’s wife) is incredible. She’s so strong on the outside, but I know on the inside she’s crumbling. And in many ways, I relate to her. I feel like I put the brave face on a lot of the time, but inside, I feel lost, hurt, and scared. There are times when I have cracked, when I have let the hurt show. Some wounds aren’t as quick to heal, as we would like to believe…

Aside from losing Jeff, the past few years have been spent dealing with a lot of turmoil; losing family, losing friends, losing my health, and at times, losing myself. Some people are in our lives for a brief time to teach us something about life that could only be learned through them. Others show us brief glimpses into ourselves and the people we want to become. Others still are in our lives for the long haul; they aren’t quick to leave. And some you can’t get rid of, no matter how hard you try (LOL!)…

I’m realizing that one of the most difficult parts of growing up is learning that it’s not as important to land on two feet, as it is, sometimes, to stand on your own. And to sometimes admit that you’re powerless to change certain aspects of your life, like illness, no matter how hard you try.

Most of the time, when I tell my friends things, it’s not so much for advice as it is for commiseration. If I’m excited about something, no matter how unexpected or off the wall it may seem, be happy with/for me. There have been some unfair judgments as of late, from people I never would have expected. People who have known me for years and years, and who have judged me on terms that I no longer feel I am capable of living up to.

I never realized that over a year of unknown illness could be easier than the first real year of actually dealing with illness as a reality. This year has been a difficult one. I feel as if school went by without me accomplishing much at all.

I can’t help but feel that many of my closest friends have gotten the short end of the stick and that over the past (almost) two years, I’ve taken more than I have been able to give. My life has been filled with physical and emotional upheaval, which at times has felt like more than I could handle.

And for those newer in my life, I often wish that they could have known me before, pre-illness. But since that’s not possible, I guess they’ll have to see beyond the walls that I’ve become so adept at putting up.

I’m grateful to everyone in my life in more than words can say, for the love and support, and the laughter and the tears, but there are some things that I have to do on my own. And I know that many people might not always agree, but I ask that you respect my choices and be confident that I know what is best for myself.

I have changed a lot in the past two years – surprised my friends in ways that no one, including myself, could have ever suspected. There are some things that have happened over the past several months that will probably never be talked about here. But the truth is, illness made me realize that life is too short to be flat-line all the time. Because lately, that’s how I’ve come to feel. Until recently, my world has been a dismal shade of gray. I’ve had to bribe myself to get off the couch. This has never happened to me before, and this is not the person I want to be.

In some ways, much of this is late-bloomer rebellion. But in other ways, it’s because I am still at the anger stage of coping. Some days I’m just plain pissed off…at everything and everyone…

I’ve realized as of late that I have done all I can to convince myself that illness won’t change my life. But at some point, the power of “positive thinking” turns into denial, which in turn becomes self-defeating. And I can no longer be that self-defeating person.

While I have always relied on others to boost me up, as many have, it’s time that I do some of the self-esteem boosting myself. It’s time that the chapter of my life spent dangling between young adult and adult comes to a close, and that I begin to live my life as an adult, making the big decisions for myself.

I’m saying goodbye to the old me and saying hello to the new me. Most of the changes are on the inside, but hopefully they’ll show a bit on the outside, too.

Good friends are hard to find, and even though many of us are geographically farther apart, you are still close to my heart, and I’m not sure I say often enough how much I appreciate those of you who have stood by me, and attempted to understand.

But the reality is that you aren’t always going to understand my decisions or my thought processes. But you have to trust that I know what is best for myself. In a lot of ways, I don’t really know who the hell I am. And that is something only I can figure out.

I’ve been working through a lot lately, realizing that I have been pretty depressed, and trying to have a more positive outlook on things. What I’ve realized recently is that chronic illness is just one of the many journeys that my life will take me on. I’m 23 years old. This isn’t the end. This is only the beginning.

*****

On a slightly unrelated note, I haven’t been blogging that much because I’m teaching a class spring term, which meets three days a week and is totally exhausting. I’ve also had some medication changes, which is keeping things interesting, as always. But more about all that another time!

Deny, Deny, Deny

“Sometimes reality has a way of sneaking up and biting us in the ass. And when the dam bursts, all you can do is swim. The world of pretend is a cage, not a cocoon. We can only lie to ourselves for so long. We are tired, we are scared, denying it doesn’t change the truth. Sooner or later we have to put aside our denial and face the world. Head on, guns blazing. De Nile. It’s not just a river in Egypt, it’s a freakin’ ocean. So how do you keep from drowning in it?”

- Meredith Grey, “Grey’s Anatomy”

*****

“Look into the depths of your own soul and learn first to know yourself, then you will understand why this illness was bound to come upon you…”

- Freud

*****

“[…] It’s hard to see the pain behind the mask

Bearing the burden of a secret storm

Sometimes she wishes she was never born

Through the wind and the rain she stands hard as a stone

In a world that she can’t rise above […]”

- “Concrete Angel”, Martina McBride

Friday was the first anniversary of my blog. For the weeks leading up to it, I was really planning to make a big deal about it; about how much has happened over the past year and how far I’ve come.

But the truth is, I haven’t come that far at all…

Yes, I’ve become a pro at telling people that I have lupus and rheumatoid arthritis. What I haven’t become good at, however, is accepting my limitations. Well, I think I’ve come to accept them for the most part, but I haven’t gotten over the fact that I need to tell the people around me about them.

It’s really hard for me to admit this. In many ways, I thought I was coming to terms with illness. I thought I was beginning to grow into this body, starting to feel comfortable in this skin.

But it has come to my attention that my filling this semester with loads of stuff has been for one reason and one reason only: to act like I’m not sick. This attempt has, however, been an abject failure. Why? Because regardless of what I was trying to prove to myself and/or others, I ended up last on the list yet again.

I tried to take comfort in things that I assumed would take away the emotional, and maybe even some of the physical pain. But the truth is, all these things did was cause more pain than was already there.

And then my body fought back and put me in the most pain that I’ve been in, in a long time. It was only then that I realized what the problem was. I am sick. And I can’t continue to live my life as if I’m not…

Would I like to think that there is some cosmic occurrence behind all of this? Sure, but honestly, I’m not sure what I believe anymore.

I used to believe that modern medicine was truly amazing. But it just goes to show that when you end up with all of the symptoms at one time that modern medicine has learned to treat, it is powerless against them. I mean, I’m taking medications just to counteract the side effects of other medications.

The truth is that there is very little beauty to this experience, no real deeper meaning or truth. There is no hope that one day life will go back to normal. Maybe there never was a normal. Maybe there was only a time when life didn’t suck this much.

Because even today, I think there is a part of me that hopes one day I’ll wake up and be pain and symptom free. Not just for a day, though. I’ll wake up and the world will feel different because I won’t be sick anymore.

I get scared because there are days when I’m so down that I think I might just throw in the towel. Because if this is how I feel now, how am I going to be able to deal with this forever?

Anger is a funny thing. It is a dark beast that hides in the pit of my stomach and rears its ugly head at unexpected times, and in unexpected places. It is like lava rising up in a volcano and it relentlessly destroys everything in its path. It is especially dangerous when it is directed at nothing and no one in particular.

I do desire to be happy, I truly do. But right now I’ve hit a wall, and I’ve dug myself into a hole that’s too deep to get myself out of on my own. In some ways, I feel like no one is listening, like I’m trapped in a glass box that’s filling up with smoke, and I’m pounding on the walls, but no one hears.

Because the truth is, if I wasn’t having a hard time facing the reality of my illnesses, I would never consider not taking my medication, I would never have skipped out on my quarterly blood work to make sure the Cellcept isn’t killing me, and I would never even give thought to how many times I’ve stared down my medication bottles, thinking how easy it would be to swallow them all down and never have to deal with any of this ever again…

I’m trying to stop the cycle of self-blame and self-loathing. I’m trying to remind myself that we do not choose our illnesses, rather, our illnesses choose us. And I’d like to think that somewhere there exists a reason for all of this. But I’m tired of fighting with myself, with my body, and with everyone around me. I’m scared that no one’s ever going to love me, really love me, illnesses and all. But most of all, I’m scared that I’m never going to feel whole again…