Breaking My Own Rules: The Doctor Is In The House

(This isn't my man. But this is a gift he got me when he was out of town. He said I need to have a doctor in the house when he's not around. Isn't he sweet?)

There has been some good excitement in my life as of late, but it has taken me awhile to sit down and compose my thoughts. Because in some ways, I feel like I’ve become pretty good at dealing with the bad stuff, but not as good as soaking up the bliss.

So I guess I should start at the beginning. Our first date…

When I first started Methotrexate (MTX), I was taking it on Tuesdays. This particular Tuesday was bad. I slept from 12:30 until 3:30 in the afternoon. When I first started MTX, I would feel progressively stronger and better as the week went on. But for awhile, I would get more and more exhausted as the week progressed, and then I’d be staring Tuesday in the face again, wishing that it would go away.

I had a first date set up, which I really wanted to cancel, because I just wasn’t feeling myself. But how can you cancel a first date? If you want to attempt to make things work, you can’t. So I didn’t, and tried to make myself look better than half dead. But what do you wear when you’ve been sleeping all day and get out of your pajamas at 7 o’clock for a date?

I was worried. I’ve never dated a doctor before. Would he be able to read on my face or by the way I carry myself that I’m sick? Would it be obvious to him? And because he’s a doctor, he spends like 100 hours a week with sick people. Why would he want to come home to me? Man, insecurities are a bitch. Clearly, I have issues…

So the first date went well. And there was a second date. And the third date came and went with no disclosure of illness on my part. And I found myself hating myself because I didn’t ever want to have that conversation. Things were going well, and I worried that illness was going to mess it up. This is why I’ve always disclosed so early in the past, so that I didn’t have to worry about getting attached to someone, only to have them run the other way. Never before had breaking the rules felt so bad…

And there’s a part of me that feels this should be easy. There are worse things in the world to have to confess to someone. But then there’s another part of me that feels like there is never a good time to break this news to someone.

I wish it could be done in a “by the way” kind of way. But that doesn’t feel quite right, either. I don’t want it to seem huge, but I don’t want to minimize it, either.

Disclosing illness isn’t a requisite part of patient education, probably because doctors are notoriously bad at delivering news. They make sure you know about procedures you’re going to have, and medications you are going to have to take (when and how to take it), but they don’t prepare you for having to tell the people already in your life about illness. And they certainly don’t prepare you for having to tell the new people in your life.

But the truth is, more than worrying about what to say and how to say it, I worry about what happens after. Does the person take one look at me and run the other way? Do they hug me and tell me that everything is going to be okay? Are they relieved that “that’s all” it was, after being prepared for the worst – “we have to talk,” “there’s something I need to tell you,” etc.

When I finally got around to disclosing, I felt like a deer in headlights. And I felt myself going into shutdown mode. “There’s something I need to tell you about, but I really don’t want to…” I can only imagine what he thought might be coming next, because he honestly sounded relieved when he heard what I had to say.

I’ve found somebody, who, when I finally disclosed, basically said “so what.” He feels bad that I have to go through what I do, but it doesn’t change anything between us. With the right person, this isn’t earth shattering news. The other person says something like “we all have our issues,” and move on. That’s exactly what I was hoping to hear, but didn’t think anyone would ever come close to telling me that.

I’m forced to be reminded that not everyone is like my ex. And that the right person won’t see me as damaged, not whole, and in need of fixing. But it’s that notion that makes me so insecure about sharing this news. I realize now, that my last relationship was not a good one. But I didn’t know any different. I allowed myself to be treated poorly because I agreed with the notion that I was damaged, not whole, in need of fixing, and not worthy of love. It’s hard for me to sit here and admit to this. But now that I know that relationships can actually be good, it’s harder to allow such treatment to happen again.

I’ve realized that in my past relationships, I wasn’t myself. I pretended to be something I wasn’t. It wasn’t intentional. I was trying hard to make things work, thinking that I didn’t deserve more than what was in front of me. I started wondering if it would ever be possible to be the real me, illness and all. But I’ve met a person, who not only accepts that side of me, but embraces it, asks questions, provides answers, and makes me feel like myself is the only thing to be.

And it’s also in that moment, of unqualified acceptance, that for the very first time, I’m glad that things didn’t work out with my ex, because I see all I would have missed if I would have settled for someone who didn’t treat me the way I deserved.

The truth is, I’m so glad that I didn’t cancel that first date. I feel so lucky to have met such an amazingly wonderful guy.

The doctor is in the house, and for the first time ever, that’s a good thing!

“Despite Lupus”

I had taken a break from reading books about lupus or rheumatoid arthritis or chronic illness, mainly, I think, because I have really been entrenched in illness for the past few months. Things have been quite up and down for me, and experiencing lupus flares after months without them has taken both a physical and emotional toll.

“Despite Lupus” has seriously been sitting on my shelf for probably close to a year. But I just haven’t been feeling it…until now…

Sara Gorman’s story sounds like so many young women with lupus, including my own. We’re at the top of our game, never stop kind of people…and boom…lupus changes all that. And for most of us, we were fairly healthy until we weren’t anymore. Although luckily for Sara, diagnosis came quickly after her first symptoms began to show. Mine went unheeded for years.

I think one of the main lessons of this book is a simple one. When it comes to lupus and the challenges that come with it, you have to be real with yourself. As Sara talked about all of the things she can no longer do or has had to accommodate, I’m struck by the thought that lately, more and more often, without even asking, someone is helping me put my coat on. I can get one arm in, but can’t maneuver the other enough to get the other arm in. It’s frustrating. It’s discouraging. It makes me feel like I’m 80 years old. Bras have become a chore for me, too. I’m finding that if I can maneuver my arms enough to swing it on, I’m partial to front closures (sorry if that’s TMI).

But who would have ever thought that at 24 years old, I’d be so concerned, not whether articles of clothing are fashionable, but whether I can get them on myself? I certainly never did.

Sara is the ultimate cheerleader. As I read the book, I imagined running, and having Sara running alongside of me, coaching me on, telling me I could do it. And I haven’t run in years. I also haven’t set foot in a gym since an acquaintance of mine contracted MRSA from the gym a few years ago. “Despite Lupus” makes me want to take back the things that lupus has taken away from me. Of course, there are things that I’ll never be able to get back. But there are others that I could have if only it weren’t for the fear that is standing in my way.

I buy purses based on whether I’ll be able to carry them both in my hand and on my shoulder. Silverware, plates, and cups all get a similar test (minus the shoulder part). So do books. Are they easy to hold? Will my hands and wrists hurt after only a few minutes of holding them?

I no longer wear my hair straight, because of the time and effort it takes to dry and straighten it, unless I’m having it done at a salon. Otherwise, I’ve come to wear it wavy/curly – which is actually what it is naturally – because it hurts my arms too much to style it.

There are many times over the last few years that I’ve wanted to go for a run. I was never a big runner to begin with, but it seems that as soon as I could no longer do it, I wanted to. Go figure!

I wish that I could have Sara on one shoulder, competing with my devilish side of me that seems determined to make many of the mistakes Sara warns against.

Sara talks about lack of control. I, too, cried when told I was being admitted to the hospital. It was the first time that lupus hit hard and I was unable to hit back. There was nothing I could do. It had, simply put, gotten the better of me.

The point of all of this is that “Despite Lupus” has made me look at ways my life has changed because of lupus. It also makes me realize that in some ways, lupus, while making life decidedly more complicated, takes me back to the basics of things. Sara encourages readers to measure life’s moments in new ways, ways that used to seem small and insignificant, but are now so precious and important.

“[…] my future of living well would be my greatest success yet to come” (181).

Yet again, I find myself deciding whether to do the lupus and arthritis walks. My feeling is that as long as I am able to walk and well enough to do them, I should. I couldn’t even touch them the year I got diagnosed. But I did both last year and think it may be a good tradition to start, especially because there are people who are willing to do them with me.

My illness outlook has certainly changed since I was first diagnosed. The year that I was sick and trying get diagnosed, I tried to keep things as normal as possible. I pushed myself way too far, and it was certainly at the expense of my health. I had planned to wage war. When lupus hit, I would hit back harder, being stubborn and headstrong. Not letting the disease get the better of me. But I’ve learned as of late to stop fighting, because it’s not a fair fight. It’s not a fight that I am going to win.

So I have to make difficult choices. I was asked recently if lupus has changed my plans for the future. How could it not? I always thought I wanted to work at a Level One Research university. But I’ve realized that in order for me to be competitive in that kind of environment, I won’t be able to be as healthy as I possibly can be. I do realize now how lucky it was that I really became sick after starting graduate school. While it made my first few years of grad school impossibly difficult, had I gotten sick before, I probably never would have committed myself to a five plus year PhD program.

So I am doing what I can, despite lupus!

*****
(Gorman, Sara. Despite Lupus. Four Legged Press, 2009.)

Patient Knows Best

During my last flare, one of the lymph nodes in my left arm became swollen and painful. Nearly two weeks later, more nodes were involved and I was in a great deal of pain. This is the first time that this has ever happened. I had e-mailed my rheum to brief him on the situation, and when it got worse, I made an impromptu appointment to see him.

The more I thought about it, the more it dawned on me that this was the same arm I had cellulitis in, for which I was hospitalized in October (see Adventures In The ER And MPU). And the pain was very similar to the pain I had during that time. Imagine someone wrapping a tourniquet around your arm and it getting tighter and tighter. My arm was in so much pain and so tender that I couldn’t even put deodorant on. But within two days of starting an antibiotic, my arm started to look and feel much better.

I saw my rheum last Wednesday, who told me that cellulitis can often incubate in the lymph nodes, and that this was likely a secondary infection; that Methotrexate (MTX) had knocked my immune system just enough to cause the cellulitis to become active again.

Now wouldn’t it have been nice if one out of the bazillion doctors I saw would have mentioned the fact that just because cellulitis appears to be gone, it can incubate? Maybe they were worried that this information would make me paranoid and hypervigiliant. But I don’t think it would have made me any more than I already am, especially since that October hospitalization.

But this experience, as with the cellulitis the first time, made me realize that I am the main arbiter of my health, and if I don’t look out for myself, no one else will. I have to trust my instincts. I knew that what was happening under my arm was not normal. And the more I connected the dots, the more I worried that this was something serious, more than a cut from shaving or an ingrown hair. And yet, I waited nearly a week to make first contact with my rheum. I tried to convince myself that whatever was going on would resolve on its own, but instead it only got worse.

In America, the land of consumerism, it used to be that the customer was always right. Not so anymore. But if such a maxim still held, I wish the same also held for patients. After all, we keep our doctors (and the pharmaceutical companies) in business. And yet our word is often seen as hearsay. And maybe this is self-fulfilling and causes us to think that our opinions should be taken with a grain of salt. After all, I haven’t gone, and don’t plan on going, to medical school. But while I may not have a degree in medicine, I do have the market cornered on my body…most of the time, anyway…

And I think my rheum knows by now that he only hears from me between scheduled appointments if something is seriously not right, and in need of his attention. He also knows that given the original cellulitis infection, the pneumovax debacle, he is the one I go to first for anything more than routine issues.

Anyway, at my appointment, my rheum had a very “green” medical student come and talk to me first. She was asking all sorts of bizarre questions. Have I been exposed to industrial waste? Do I do monthly self breast examines? I could tell where this line of questioning was going. The “Big C.” It’s not like I hadn’t entertained that idea in my mind already – fever, swollen lymph nodes (But apparently, according to my rheum, issues related directly to lymph nodes aren’t tender to the touch. Who knew?). But given that the original node swelling had been related to a flare, I figured it had to be related to that. And not the fact that I drink radioactive sewage for breakfast…just kidding!

In some ways, I had some vague idea of what was going on. I didn’t need some med student trying to convince me otherwise. And my doctor came in, took a look, asked a few questions, and pretty much knew what was going on, too, based on all of the information I had provided for him via e-mail.

So I’m off MTX, again, and hoping I’ll be able to go back on it in a couple of weeks, once I’m off the antibiotic (Keflex).

More importantly, though, I am also reminded how much medicine is an inexact science. Doctors can only do so much, especially given the resources they have available to them. This whole re-upping of cellulitis is a perfect example. I’m on MTX so it can attempt to reign in my crazy immune system. But the catch is that if it suppresses my immune system too much in the other direction, I’ve opened myself up to a host of other issues, including pesky infections that my body is incapable of fighting off. (And as of this week, the picture for new drugs to treat lupus and rheumatoid arthritis got a bit more dismal)

So what’s the next step for me? I’m not really sure at this point. I’m hoping that I can go back on MTX, at least until my next (scheduled) appointment with my rheum in June. And from there, hopefully finding a drug that I can tolerate, does a pretty good job of reducing my symptoms, and doesn’t try to kill me in the process. But at this point, I’ve resigned myself to the fact that, that may be asking for too much. The thing I do know for sure, though, is that when it comes to my health and the care I receive, I know best!

And speaking of patients, check out the latest edition of Patients For A Moment, courtesy of Duncan Cross.

Always Something There To Remind Me

After hosting Patients For A Moment #18 and asking other patient bloggers about their relationship with illness, I decided that I should explore my own. I was a bit forestalled in this because I was hit with several lupus flares in February, which quite honestly, took me very much by surprise. Because these flares brought with them symptoms that I haven’t experienced in months, maybe even years, and also came with symptoms that I have never had before.

Flares are the direct hits, the most extreme example of my body in turmoil. My latest flare began with my right rib hurting. I guess you could call that my “universal sign” for a flare. That’s one of the very first symptoms I had way back when I first got sick. Then comes the headache, which seems to prefer only one side of my head – actually, the flare seemed to favor one side of my body – only to be followed up in the morning by the “lupus hangover.” And as I was sitting battling a headache and nausea, I realized that I did not miss these kinds of things.

I had a day. The signs were there. I had a freaking day to stop my speeding freight train of a body from derailing off the track. But I didn’t.

You know how else I knew I was flaring? I brushed my teeth and the toothpaste gave me heartburn…

I never realized before how my breathing changes when I’m in a flare and in pain. Somehow I’ve adapted to a kind of deep breathing – slow deep breaths – that seem to be one of the only things that keeps me at all calm and prevents me from freaking out when my body is going crazy.

And for the first time in two and a half years, I cancelled an appointment I had. I tried to gear myself up, telling myself that if I just threw some clothes on and headed into the frigid Michigan winter, I would make it. But then my head started pounding and the nausea came on strong, and I really thought that if I went somewhere I would either puke or pass out, neither of which sounded appealing. So I didn’t do it. And I knew that I was doing myself a favor.

In these moments, when every single movement is painful, and I can’t believe it’s possible to feel as bad as I do, I catch myself wondering what I did to cause my body to punish me so relentlessly.

Almost in the same instant that such thoughts enter my consciousness, I tell myself that I need to push such thoughts to the furthest corner of my mind.

It’s easy to want to find a trigger for a flare. Maybe I stayed up too late, or didn’t eat well enough, or worked out too hard. The list of what I could have potentially done wrong is endless.

But such self-blame is counterproductive, especially given the fact that I am no longer on meds specifically to treat lupus. My rheumatologist and I agreed at my last appointment that the RA was the bigger problem. But now I’m not so sure. Even though it seemed like Cellcept wasn’t doing anything, is it possible that it was and I just didn’t realize it?

The truth is, I will never know what triggers these flares, and the fact is, it is most likely a very complex combination of things. And as bad as flares are, there are other things, too – small reminders…

No matter what I’m doing, I can be feeling great, and then boom, just for good measure, I get reminded that no matter how healthy I may feel, if even for a second, I’m not.

There are certain things I do, which no matter how I feel going in, cause me pain. For instance, I can feel fine, have very little pain, and as soon as I start doing my workout video, it feels like someone is trying to pull off my arms and legs. Yes, it feels like someone is trying to dismember me (or at least it feels like what I imagine it would feel like to be dismembered). Nice, huh?

Every time there looks like there will be a reprieve, some other system gets f***ed up or something goes wrong. The past two and a half years have been a nearly constant onslaught of ridiculousness.

Even my insurance company insists on reminding me that I’m sick (see picture at beginning of post). Talk about Big Brother. I think it’s their way of making sure I realize how much more I cost than “normal” people my age.

And I keep having to be reminded that I haven’t been at this for that long. Next month will mark just two years since I received the diagnosis of both lupus AND rheumatoid arthritis. But honestly, it feels like 10 years. It feels like so much time has passed, and really, not very much time has passed at all.

As much as there is physical pain, there is so much emotional work and upheaval that come with flares and other signs of a body that is battling itself. And it’s exhausting.

I’ve been dealing with some other health issues, which I will hopefully post about soon. But the truth is, I feel like I’ve hit my limit. We all have a breaking point and I feel like I’ve hit mine. I am so ready to be taken off all the meds, as lately, they seem to be doing more harm than good. Sometimes I feel like illness has made me a stronger person than I was when I was healthy. But right now that seems like a pretty big price to pay from always having to be on guard about my health.

I am once again left to wonder:

Does this ever get any easier?

Is there ever a day off?

Because it seems to me that no matter how I feel, there’s always something there to remind me…

Patients For A Moment, #18

Welcome to the 18th edition of the patient-centered blog carnival, Patients For A Moment. The posts submitted were based on the following questions I posed to readers:

What’s Illness Got To Do With It?

What is your relationship to illness? Is there a particular time when you wish illness wasn’t in the picture? Or is there a time when you find it’s easy to forget about illness?

Illness can be good and bad, and provide a wide range of emotions and experiences. For all, living with illness is a delicate balance, to be sure.

*****

What would it be like without illness?

Kathy, from the blog Making Noises, describes in the form of a poem, how creative endeavors help her escape illness and allow her to be “a sick chick no more”, in the post, Behind the lens.

Duncan Cross, from the blog of the same name, describes his relationship with illness like Ike and Tina Turner, in the post What’s illness got to do with it? Duncan wishes that illness wasn’t part of the picture, but it is.

In the post Ahead in the Game, Behind in Life, Brittney of The Road I’m On, talks about what it means to be a veterinary student living with chronic illness. Without illness, she says she’d be ahead in just about everything, but illness makes getting ahead difficult.

Elisabeth Greenwood, from the blog Redefining “Good”, suggests that illness is always there, like a pet, creating an unbreakable bond, in the post Fessing Up.

Annie Martin, and the blog It’s Time To Get Over How Fragile You Are, takes the good with the bad in the post Life With A Side Of Illness or Illness With a Side of Life?

Thank you for letting me be myself

In the post To Be, Or Not To Be,…, Maria from My Life Works Today, explores her relationship with illness, and suggests that many of the uncertainties she faces would be the same even if she didn’t have lupus.

Helen, from the blog Pens and Needles, writes about the future and efficacy, or lack thereof, of contingency plans, and how we have to rely on ourselves and our innate ability to get through anything in the face of illness, in the post Big Plans.

In the post The kindest of friends, Sandra, from the blog Healing Environmental Illness, puts a positive spin on the illness experience by examining all of the lessons that illness has taught her.

In a thought provoking post entitled The Perverse Benefit of a Diagnosis, Lisa Emrich of the blog Brass and Ivory, describes how having rheumatoid arthritis gives her the possibility of trying medications that may potentially help her multiple sclerosis, as well.

Pain pain, go away…

In the post Making Pain Go Away, Barbara Kivowitz of In Sickness and In Health, explores the trials and tribulations of titrating the dosage of medication, and what it means to not be in pain.

Jolene, from the blog Graceful Agony, beautifully expresses that while chronic pain becomes a part of everything we do, it is simply what we feel and not who we are, in the post Feelings of Uselessness.

Fibro Mom, from Fibro World, explores the question of whether there is a cure for chronic pain, in the post Fibromyalgia Is Not For The Fainthearted.

And finally, Kelly Young, Rheumatoid Arthritis Warrior, explains What Is it Like to Live with Rheumatoid Arthritis? Part 3: Communication Failure, in a post that suggests how hard it is to explain RA and its varied symptoms to others.

*****

Thanks to all those who submitted posts for this edition of PFAM. I really enjoyed reading them, and the insights that you shared.

The next edition of PFAM will be hosted by Duncan Cross on March 10th.

“Patients For A Moment” Is Here February 24th

I’ll be hosting the 18th edition “Patients For A Moment” – a patient-centered blog carnival created by Duncan Cross – on February 24th.

Here are my questions for this edition, which your posts should be related to:

What’s Illness Got To Do With It?

What is your relationship to illness? Is there a particular time when you wish illness wasn’t in the picture? Or is there a time when you find it’s easy to forget about illness?

If you would like to submit a post, e-mail the following to gettingclosertomyself@gmail.com:

Your name (as it should appear)
Your blog’s name
Your post’s title
Your post’s URL

And make sure you put “PFAM” in the subject line. All submissions wishing to be considered should be received by 11:59 p.m. Sunday, February 21st.

Looking forward to reading your posts!

L-I-F-E

I was a little late, and didn’t end up submitting something for the latest edition of Patients For A Moment (PFAM), which was hosted by Selena at Oh My Aches And Pains. Selena’s question for this edition was, Love? Hate? What are the four letter words you use to describe your life with chronic illness?

Despite the fact that I didn’t make it in time to submit, I thought this was a really interesting question, and wanted to take a stab at answering it.

So, if I had to come up with a four letter word to describe illness, it would be life (L-I-F-E).

First of all, illness is a fact of life. At one time or another, everyone becomes ill. For some, this isn’t until they are old and in their final days of life. For others, like me, it happens in our “prime,” which is definitely sucky, but can also be character building and teach us things we never even knew about ourselves.

In a perfect world, illness wouldn’t exist. No one would have to go through the things that so many of us do. But the world isn’t perfect, and neither are we…

I also use the word life because illness has had a broad ranging effect on my life, both absurd and profound. It has caused me to have innumerable identity crises, but it has also forced me to show strength that I never knew I had. You never quite know what you’re made of until you’re called upon to face a situation that shakes you to your very core.

Whatever I was before, and whatever I intended to be after, illness has become inextricably linked with my identity and who I am as a person. Illness is not all of me, but it is a very big part. And I have to be realistic. Illness is a part of my life now. That’s just the way things are.

And illness is a part of life in that it doesn’t just affect the sick person. The people in my life have been impacted by my illnesses, as well as I have. Probably not to the same degree, but illness is one of those things that shows people’s true colors – those who truly love you will be there, even if, especially if, you are ill. Those who don’t, won’t.

Illness has also taught me the capacity to feel (F-E-E-L) in a deep way. I think I’ve always been a caring, feeling person, but illness amps up the senses. Good feels better and bad feels worse. But at the end of the day, I know that I am not numb to the world around me. I feel joy and pain; I am a part of it. Because that’s life…

I guess I might use another four letter word, suck (S-U-C-K). Lately I’ve become very adept at telling things (and people, but not to their faces) to “suck it.” Very mature, I know. Because the truth is, illness can suck. It can also suck the life out of you, physically and emotionally. But rather than concentrate on the negative aspects, I would rather focus on the fact that despite everything I’ve gone through over the past few years, and the fact that things do suck at times, I’m living. I’m alive.

And with every day more I spend on this journey, I’m learning that illness and life are not diametrically opposed to each other. There can still be life in the face of illness.

So, for better or for worse, this is my life…and I’ve only got one…so I’ve got to live with what I’ve got…

On a side note, be sure to check out Selena’s edition of PFAM. And I’ll be hosting PFAM on February 24th. You can base your posts on the following questions: What’s illness got to do with it? What is your relationship to illness? Is there a particular time when you wish illness wasn’t in the picture? Or is there a time when you find it’s easy to forget about illness?

The Sacrifices We Make To The Medication Gods

I’ve been a bit absent from blogging lately because I’ve been waiting to get some closure on some issues I’ve had with Methotrexate (MTX).

MTX is the first medication from which I’ve seen tangible improvements in my arthritis. My pain is greatly diminished, and my joint mobility has visibly increased. So you’re probably wondering, is there a “but”? Yes, unfortunately, there is…

My rheumatologist’s office called me a few weeks ago to tell me that my white blood cell (WBC) count was low. Then they called last week to tell me that my WBC count was still low and my liver levels were up.

So off the MTX I went. A week and a half off of it, my elbows won’t bend all the way, my fingers are stiff and swollen, and my right hip is back to hurting on a daily basis.

I’m not going to lie. Being on MTX hasn’t been all butterflies and rainbows. There’s the tell tale nausea and dizziness. And I’ve gotten to a point where I wonder whether sleeping my life away is worth not being in pain. It causes the kind of fatigue that no amount of coffee can kill, the kind of fatigue that you have to submit to because it’s too great to fight it.

That’s why this situation has been all the more frustrating. Aside from marked fatigue, I have felt pretty good. So why couldn’t things, just once, go smoothly? It’s so frustrating to find a drug that actually works in some ways, but is simultaneously killing you…

So I’ve been going to the hospital once a week for the past six weeks to get my labs drawn. That’s not the ideal thing to try and diminish the primacy of illness in your life. It gets really old, really quick.

(And to add insult to injury, my doctor’s office somehow managed to give me the wrong lab requisition form, so I had been getting the incorrect labs done for several weeks. But that’s a whole other story…)

I am certainly not someone who loves to be on meds, especially the heavy duty ones I am currently taking. But I know that I wouldn’t be functional without them. Every time I have a flare, I’m reminded of just how bad things can get, and the meds seem like a small price to pay.

And oh, there are the sacrifices that come with prednisone. But the thing is, as much as I hate the side effects, I am always reminded of its wonders when I’m experiencing crippling pain – and I finally have to concede and take it. A few hours after I take it, I no longer feel like my body is made of lead. I know that prednisone doesn’t work this way for most people, but for me, I can take 10 mg. every once in awhile and I seem to be able to fool my body into thinking that it’s going to be getting more soon, but it doesn’t. And I always feel like an immobilizing weight has been lifted off my shoulders.

It also seems to me that any medication that says it will cause lack of appetite has that effect on me. Or causes really weird food cravings like my fixation with baked Cheetos, boxed macaroni and cheese, and orange juice – viva la orange – which thankfully, has finally gotten to the point where the combination is no longer appetizing and just makes me nauseous. Because that was a weird phase for awhile.

And lately, I have been so spacey. I can only hope that blaming it on MTX is truly the problem. In my first few weeks on MTX, I screwed up the appointment days/times of four appointments. That is not like me at all. But maybe my brain has ceased to function when it is not working on overdrive to cope with pain.

What I wish healthy people understood, is that none of these drugs are a cure. Every medication has its pros and cons, and I don’t think it’s ever an easy decision to make to start a new medication, especially one that is more aggressive than anything else you’ve tried.

It’s like, if the disease doesn’t kill you, the medication will. But society doesn’t view people who are on a lot of medication, for whatever reason, in a positive light. I was particularly frustrated watching “The Biggest Loser” a few weeks ago. The main doctor on the show made the main goal of achieving health to be being on as few medications as possible. It’s a nice thought, but in reality…

And all everyone seems to want to know is when I’m getting off MTX. I don’t know, and honestly, right now, I don’t really care. Yes, I would very much like to get off the meds, all of them, but right now, to me, feeling good is more important than some lame goal of banishing as many medications as possible from my medicine cabinet. I need to get my health in a stable place, which it hasn’t been in for the past several years.

I wish I could have the illness disclosure conversation and say that lupus and rheumatoid arthritis rear their ugly head once in awhile, but other than that, they don’t mean much. But that’s not the case. So for right now, for me, living well means taking a bunch of pills everyday in the vain hope that I can lead a semi-normal existence.

I heard from my doctor’s office yesterday that my labs (finally) came back normal. What a relief!

So for now, I’m back on MTX, and redoing labs in two weeks. We’ll see how long this love affair lasts…

A Slave To Medical Technology?*

A few weeks ago, I took this bag of change I had to a coin counting machine. I’ve had the change for maybe a year, and figured I probably had about $70 worth. Turns out I actually had almost $160 worth of change. Change that I take out of my wallet everyday and save, because I don’t like carrying it around. Basically “found” money.

Anyway, rather than save that money, I decided to buy an IPod Touch. My aunt and a friend’s husband had both recently purchased one, and it looked pretty cool to me. It’s not something that I absolutely needed, but it only ended up costing me about $30 because of the change I had turned in.

I never thought I’d be a slave to technology, but this thing is awesome. Aside from making me more hyper-organized than I already am, the best things are useful and cheap (read $.99 or free) applications that are useful to those of us with chronic illnesses.

(Check out my pictures of screenshots from ITunes on my computer…)

I’ve downloaded a medication tracker, iMedication, which allows you to put in the name of the medication, the dosage and frequency, and the prescription number and when it is due to run out. It keeps all of your medication in a very convenient list right at your fingertips. Much better than my handwritten index card that I keep in my wallet, which has to be re-written every time a dose changes.

I’ve also downloaded MyEmergency, an application that allows you to keep all of your personal information, plus next of a kin, allergies, a list of the names of the medications you take, medical conditions, doctor details, and insurance information.

Another great application is My Pain Diary Lite (Lite as in free). This allows you to rate your pain intensity (on a scale of 1 to 10; no silly smiley faces here), the type, location, and trigger of the pain, and the remedy. I think this is a good way to more accurately keep track of flares, which I haven’t been very good at doing. It’s also good for people who keep a paper pain journal.

On the whole, I haven’t found one application in which I love all of the features, that’s why I have several separate ones. There’s also Medical Records and My Health Records, which are both free. I just downloaded those and am going to play around with them.

Obviously, there are going to be some things that won’t get completely digitized any time soon, like prescriptions and lab requisition forms. But on the whole, I’m really impressed with what’s out there, which seem especially useful for people who have complicated medical histories and health issues.

Although I guess there’s always the question of whether you really want to put all of your information in one place because 1) someone else could easily get their hands on it, 2) what happens if the IPod breaks, and 3) what if you don’t have it with you when you need it? Also, I wonder how doctors these days feel about their patients using such technologies. Do they streamline the doctor-patient encounter or make it more cumbersome?

Along with fancy IPod applications, there are a plethora of Internet sites, some more social network-y and free – like Cure Together and Medpedia - and some more practical and expensive, like Minerva.

If you know of other sites/programs that you particularly like (or don’t), leave them in the comments. I’m interested to know peoples’ experiences with technology as it relates to chronic illness. Do you partake or opt to stay away?

* I have posted about these product out of my own personal experience with them, and not because I have received compensation, financial or otherwise, from these companies.

"Hello, Lupie!"

At a recent support group meeting I went to, the leader asked us at the end of the meeting if any of us were offended that she refers to us as “Lupies” in her e-mails.

Personally, I’ve never been particularly fond of the term. But it doesn’t bother me, per se, that she uses this greeting. But apparently, it bothered someone. Because she received an anonymous complaint that someone found her use of the term to be offensive.

I cringe at how political everything is these days. Take, for instance, the recent Facebook meme that asked women to proclaim their bra color in their status update to raise awareness for breast cancer.

I admit, I did it, too. But then I read this article, and I saw the error of my ways. I hadn’t given much thought to the fact that many women who have had breast cancer can no longer wear bras. So in some ways, it made all of us tit-ified women seem like we were elevating ourselves above women who can’t wear bras or no longer have breasts.

There certainly is a pride that comes with supporting our own causes. But I think we do this, sometimes in detriment to ourselves, because we have limited the scope and range of our support. It is neatly and conveniently tied up in our specific illnesses. But as I have said many times before, regardless of the particular illness, chronically ill people, generally, have a lot in common with each other.

Lupus has been getting more attention lately, but the battle doesn’t start and end with lupus. Like many illnesses that impact mainly women, lupus remains the “bastard child.” And there are many other illnesses out there that get far less attention than they deserve.

When I was first diagnosed with rheumatoid arthritis and possibly mixed connective tissue disease, I remember being very dissatisfied with this. Neither explained the whole story, and I didn’t want to get lumped into a vague disease category. When I received the diagnosis of lupus, in addition to rheumatoid arthritis, it made sense. And it gave me a box to put myself in.

But I realize now that the box may not be all it’s cracked up to be. Because so many of us have many other illnesses on top of our primary ones. I now have Raynauds, and the jury is still out on a few other auto-immune issues. So in some ways, the “check a box” mentality is severely limiting.

Lately, I’ve been at odds with various people about the role that illness should play in my life.

When it comes right down to it, I think you have to own it. Sometimes owning it means making it more visible for yourself. And sometimes it means making it more visible to others.

If I don’t do it for myself, then I do it for all those 20-something women, who, in the prime of their lives, find themselves having strange and bizarre symptoms that no doctor can seem to figure out. And for those who start having joint and muscle pain after working out, which eventually never goes away. Because I’ve heard this story all too often from those I have met who have lupus.

I guess my point is, when it comes to support, healthy and sick people play very different roles. I have established that there are certain people in my life who are never going to make an effort to understand my illnesses. And really, the only people that get to hear everything, are my fellow “Lupies,” who can understand every part of this journey.

Believe me, I love the healthy people in my life, but sometimes they really just don’t get it. And there is a huge part of me that is grateful that they don’t, because if they did, it would probably be because they’re sick, too.

When I was in the hospital in October, my room phone never stopped ringing. I think it drove the doctors kind of nuts because every time they’d come in to talk to me, I’d be on the phone. And there was a big part of me that wanted to tell them that, that wasn’t my real life. And I knew that as soon as I was out of the hospital, things would be back to “normal.” The hospitalization made a lot of people take notice, who hadn’t before.

But it’s like when you spend months and months, or even years, planning a big party. And then the party comes, and it is over with in two seconds. There’s a huge letdown afterwards. Getting out of the hospital certainly wasn’t a letdown, but some people going back to the way they had acted pre-hospitalization, was.

This is all to say that we all make mistakes sometimes. Even those of us with illness don’t always say or do the right thing. Sometimes following the crowd supercedes common sense.

There is so much competition, even between groups that deal with the same disease. So who’s being helped in all of this? And who’s being hurt by the lack of cohesion? If it was the organizations that were being hurt, then they certainly wouldn’t be so fervently against each other. When it comes right down to it, it’s the patients that suffer the most, not from disease necessarily, but from a lack of readily available support.

I’ve wondered quite often why none of the doctors I’ve been to have had any resources or literature available. Sure, now my doctor asks me to sign up for research studies, but that’s because his colleagues are doing it, and who knows what he stands to gain.

I think a lot of doctors see this as being a single patient fight. Doctors don’t really care at the end of the day if you want to stand up and speak out about your illness experience, or if you want to find a group to support you. Doctors might support events, such as walks, but again, this is to promote themselves and the newest drugs. They speak about a cure, but to me that’s not much more than a good rhetorical device. If you use the C word, you can command a crowd for sure.

I have often wondered what it would be like if lupus and purple became the “thing” that was plastered on cereal boxes, yogurt containers, and a myriad of other products. What would it look like if lupus was widely available for public consumption? I honestly think it would leave a bad taste in peoples’ mouths. I don’t think they would be comfortable with it, and I don’t think I would be comfortable with it, either. This isn’t about endorsements, even though that’s where the money is.

Clearly, I’m skeptical of the efficacy of these kinds of politics. If a certain group can’t agree on what terms they should be using, there are going to be great rifts between people with the same illness. Like I said, I’m not 100% fond of the term Lupie, but I think if someone with lupus really takes offense to it, it’s because they haven’t owned up to their illness.

In many ways, the beast is not these illnesses. The beast is the ignorance of healthy people. The beast is doctors who don’t listen to what we’re saying. And unfortunately, the beast can sometimes be ourselves, losing what’s really important, in the battle for recognition.

I think all of the politicking proves that we have to stick together. I shouldn’t have to divide my loyalty between lupus and rheumatoid arthritis. My body certainly doesn’t, so why should my mind?

The Ultimate "Coyote Ugly"

A month or so ago, I went to bed with a dull ache in my shoulders, which I assumed was from carrying groceries and other purchases after a shopping trip. When I woke up the next morning, it was clear that I was flaring. I could only extend my elbows half-way – and resigned myself to walking around like Frankenstein’s monster all day long – had a low-grade fever, and felt nauseous.

Lupus and rheumatoid arthritis (RA) are severe examples of coyote ugly. I never know what I’m going to wake up to. And I find that particularly distressing.

For those who don’t know, coyote ugly is an “urban” term that suggests that after a drunken night, you wake up next to someone in your bed who is so ugly that you’d rather chew off your arm to escape than wake the person.

And that’s kind of how I feel. Even though illness is not a person, I feel as though I’m at the mercy of something I don’t have total control over. And I guess a big part of illness acceptance is the lack of control aspect.

Lately, especially, I really feel like I don’t have very much control. I wonder: Do we control the medication or does the medication control us? Or is it a combination of the two?

We were at family dinner for the holidays, and my elbows were in such pain and of little use, I asked my sister, who was sitting next to me, if she could cut my food for me. Seriously. It was a new low for me. Being that I was off Cellcept and Methotrexate was not working yet, I guess I shouldn’t have been surprised that I couldn’t function up to what I feel is, or should be, my potential. But my “highest level of functioning” keeps changing, and it’s pretty hard for me to deal with.

Cellcept clearly did not work for me, and it may have even caused more harm than good. And Methotrexate seems to be a mixed bag so far. The day I take it, I get dizzy and nauseous. And lately, I’m exhausted a lot of the time. The thing is, the dizziness and nausea aren’t so terrible, but they’re just enough to make me wonder why I’m doing this to myself. And my rheumatologist mentioned increasing my dose, but I’m not eager to remind him of that fact.

Honestly, I think I was doing better when lupus was the bigger issue. As much as I thought that lupus was a problem, and it was (and still is to some extent), the symptoms were more consistent than my RA symptoms are. With lupus mainly came dizziness, nausea, headaches, and muscle aches, mainly in my thighs and upper arms. But I can go to bed fine, and wake up with swelling and stiffness in my knees, elbows, hips, wrists, fingers and hands, and shoulders, to the point where those appendages become pretty much useless. Clearly RA has the upper hand right now.

It’s not so much that I worry about waking up and looking at myself in the mirror, and seeing a stranger. I think I’m past that phase now. It’s more that I’m worried about what new symptom I’ll wake up to, or what part of me will have decreased functioning. I guess if we all lived life this way, we’d have no reason to get up in the morning. But I guess I’m still at a point where I don’t know I’ve pushed too hard until I find myself in so much pain that I can’t move.

I try to be optimistic that Methotrexate is going to make a real difference, that my arthritis won’t get worse before my very eyes. But right now, I’m not really sure what to think.

I guess if I had a choice, I’d rather wake up next to some ugly guy that I don’t remember meeting – not that, that has ever happened to me before – because it’s really bad when the party you don’t want to wake up next to is yourself…

2009: The Year For Lupus

For all intents and purposes, 2009 seems to have been the year for lupus. There have been a lot of happenings surrounding the disease.

MJ – With the sudden and tragic passing of Michael Jackson, the King of Pop, questions surfaced about whether the singer suffered from lupus. I’m no medical expert, but based on what I’ve heard, I think that there’s a good possibility that he did have the disease. Keeping with this theme, I channeled my inner Michael, and went as him for Halloween (see pictures at beginning and end of this post).

“Lucy” – Julian Lennon and James Cook introduced the song, “Lucy,” which paid homage to the Lucy from the song, “Lucy in the Sky With Diamonds.” Lucy Vodden died of complications from lupus in September, at the age of 46.

What strikes me about this song is the fact that it’s about Lucy and her girlfriends. I think that, especially for women with lupus, this is empowering. It’s like, despite her illness, she was stilled loved.

I think that’s something that I forget sometimes. Sometimes I feel incredibly alone, like I have no one. But in reality, that’s not true. It’s really easy to focus on the places where support isn’t coming from; my program/department, men, the world in general, sometimes those closest to me. And it sucks! But this upbeat song puts things in a different perspective, even though it doesn’t explicitly talk about the disease.

In the music video, both Lennon and Cook are wearing the purple “Someone you know has lupus” bracelet.

You can find out more about the song here.

Benlysta – The first lupus drug in over fifty years made it into the news, suggesting that it may just be the next best thing. Here were my thoughts on it.

Me – For me, 2009 was more down than up. It began early on with the tragic death of my cousin, which sent me reeling. It continued with a search for answers about myself and others. There have been posts about love, dating, relationships, and babies. There was my first lupus hospitalization. There was the opportunity to travel, to talk about my illness experience, and to meet blogger friends.

Once again, my readers have come to my rescue. I’ve been overwhelmed by the comments that were left while I was away, and even though I may no longer get a chance to comment back to everyone, I want you all to know that I read your comments and they mean a lot to me.

Here’s to hoping that 2010 will be full of good things!

Add Another One To The List

There’s always something, isn’t there?

It’s the holiday season, and lupus and rheumatoid arthritis are the gifts that keep on giving…

I had my six-month rheumatologist appointment on Friday.

The more that I think about it, I’ve had pretty constant disease activity since I was in the hospital, and maybe even before. And this isn’t shocking, considering that the hospital is a pretty horrible place to try and survive in, even if you’re not dying. No sleep, crappy food (if you even feel like eating), and being constantly poked, prodded, and questioned by strangers. The hospital is the ultimate lack of control.

For instance, I can’t quite forget when a hot, male orderly came into my room, asking if I had paged the nurse. I reluctantly told him that I had to use the bathroom. He asked if I could get up and walk to the bathroom or if I preferred a bedside commode. I opted for the bedside commode because I was in no condition to walk anywhere at that point. I remember thinking, nothing makes you feel eighty years old like a bedside commode… (Obviously, my mind must always be on “thinking of good lines for blogging” mode)

Anyway, my doctor was so charming, he squirreled me into getting the H1N1 vaccine. I said I wouldn’t do it. I said I would refuse. But he offered up, unprompted, “I got it. And I made my wife and daughter get it” (I didn’t know he had a wife and daughter - maybe he just made them up to butter me up). I was tempted to say, “Well, they don’t have whacked out immune systems.” But I didn’t. I made the decision to get the shot. And I’m not suggesting that anyone with similar illnesses get it. I think it’s a personal decision. My reporting this is just that. I’m not advocating one way or another, although I know there are many people out there who have very strong opinions on both sides of the issue. I found myself looking and feeling my arm, making sure that it didn’t look weird, or hurt more than I thought it should. I kept the injection site covered with a band-aid for several days. All seems to be fine so far…

So I am officially off of CellCept. But I am starting Methotrexate (MTX) next week. I have avoided MTX and am not thrilled about this change. But…

Based on the symptoms I am having, my rheumatologist and I agreed that the CellCept seems to have plateaued – when I had to be off of the CellCept for two weeks during and after the “pneumovax debacle,” I didn’t know if I’d be able to function without the CellCept, but I was fine – and that the rheumatoid arthritis has taken the “upper hand.” My right hip is a daily pain, and my elbows are painful, swollen, and don’t fully extend anymore, without great pain and effort. This was a symptom I was having when I first started seeing my rheum. Reverting back isn’t a comforting feeling.

I’m starting on oral MTX, which only has to be taken once a week. My doctor seemed jazzed about the shot form. But I protested. This is the one thing I’ve been trying to avoid all along. I just don’t think I can inject myself. And there has to be a point where I put my foot down, and say, “I just won’t do that.” My doctor thought it was kind of funny that the mere thought of giving myself a shot made me nervous, given everything I’ve been through. But ultimately, he conceded. He said that if I don’t do well with the oral form, we will try the shot, and we will try and coordinate with the student health center so I can be given the shot once a week and won’t have to do it myself. Not so sure I really want to trust the student health center with shooting me up with anything, but at least the guy is trying…

Plus, given my more than occasional blue lips and fingernails, my rheum confirmed that it looks like I’ve acquired a secondary condition to both lupus and rheumatoid arthritis: Raynaud’s (phenomenon). Fabulous. Just add another one to the list.

It’s funny because the nurse who met with me to go over MTX said, “If you have a fever of 100 or more, and there is any sign of infection, you have to stop taking the medication and call us immediately.” Then she said, “But you know, a sniffle is not an infection.” And I’m thinking to myself, you just told me to be hyper vigilant, and now you’re telling me not to overreact. Makes total sense.

A lot happened at this appointment. But I feel oddly okay with both of the decisions I made. My doctor was cracking jokes. His demeanor was so much different than my very first appointment with him in January 2008. There was a point in time when I considered switching doctors. But this appointment put me at ease. I asked if MTX was truly the best option at this point. He said yes. And given that we haven’t tried everything yet, I feel like I have to try things at least once. And, in some ways, I’m happy to be trying a new med because we’ve kept things status quo for a while, without seeing any marked improvement. Plus, we I think we’ve been fairly liberal in terms of treatment to this point. My rheum even thinks that some of my recent gastrointestinal issues may be a result of having been on the CellCept for as long as I was. So despite all of the bad things I’ve heard about MTX, I have to be positive and think that it will hopefully work for me and that change is a good thing…

More than anything, I’m amazed at how far the relationship with my doctor has come. And I appreciate that we both took the time and effort to feel each other out and get to know each other, over the last almost two years. I feel at ease with my decisions because I felt comfortable asking the important questions, and my doctor openly and willingly answered them.

I’m not sure whether it was the holiday spirit, eggnog, or something else that put a spring in my doctor’s step, but whatever it was, I liked it.

I’m sure I’ll have plenty of updates once I’ve started MTX, and I’m a bit relieved that I’ll be at my parents’ when I start it. So, for now, I’m off…

Happy holidays, everyone! Catch you in 2010!

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…

Chronic Illness Is A Marathon, Not A Sprint

Recently, one of my good friends got a tattoo to commemorate running her first marathon.

I’ve been thinking about getting a tattoo for awhile, one that symbolically represents lupus and my illness journey. And my friend’s explanation got me to thinking about the fact that having lupus is like running a marathon…every day…for the rest of my life. Or living with any chronic illness really.

Acute illness is a sprint. You run hard and fast for a short period of time. You lose stamina, but you gain it back.

But chronic illness is a marathon. It’s a long haul. You need to learn how to pace yourself so that you’ll survive to the finish line.

Running a marathon takes discipline and training. It takes as much mental, as it does physical, agility.

While I may never actually take part in a “real” marathon – although I would like to try to walk a half-marathon at some point – I think the analogy of chronic illness as a marathon is a fitting one.

And some of the advice for marathon runners is fitting for “sick” people, too: get plenty of rest, drink plenty of water, practice self-care, and always wear comfortable shoes.

It’s hard to imagine that people who want and put their minds to running a marathon get tired of training. But they do. So just imagine how chronically ill people feel. They’re training for something they didn’t ask and weren’t prepared for.

So if we think about the courage and strength it takes runners to undertake such a feat, it should give us hope (and pause) about the courage and strength that we, as chronically ill people, have to get through each and every day.

We don’t always make it through on the top of the leader board. Sometimes our illnesses get the better of us. But ultimately, we push through and move on. And if we think of each day as a leg of the journey, we always have our eye on the prize and are focused on the end goal, whatever that may be.

(And in case you’re wondering, the jury is still out on my tattoo. I know what I want to get, and where on my body I want to get it, but there’s something that’s holding me back. I’m not sure what it is, really. A tattoo is so permanent. But then again, so is lupus. And lupus wasn’t a choice. So stay tuned…)

The Third Date Rule

I guess you could say that I’m back in the dating saddle, which is both a good and bad thing. It’s definitely good that I’m moving on from my past relationships – especially the one I posted about – but it’s very overwhelming to me because lupus and rheumatoid arthritis are always lurking in a dark corner, waiting to throw a kink into things.

So when you start dating someone, when is it okay to drop the “sick bomb”?

My first inclination is the sooner the better, so if someone wants to run the other way, they can before either one of us gets too attached. But because so few relationships seem to make it past the first date, maybe it’s best to wait it out. Then I got to thinking that maybe the third date is best. If you’ve gone past one and two, you’re getting somewhere. Definitely time to come clean. So in other words, I don’t know. I’m feeling very conflicted at the moment.

Mainly because this conversation gives me nightmares. I imagine it going something like this (even though I’ve really had it, and this is pretty much how it goes):

ME: There’s something I need to talk to you about, and I’m not sure how you are going to feel about what I have to say.

THE GUY: Trying to be cute, says, “Are you seeing someone else? Did you used to be a man?”

ME: No, nothing like that. (This is potentially worse)

THE GUY: Whew!

ME: I’m sick. I have lupus and rheumatoid arthritis – followed by a very laymen explanation of illnesses – and while these illnesses effect my life to varying degrees at varying times, I thought you should know so that you can make the decision to get out while you can, if you don’t think this is something you can or want to deal with.

In my last three relationships, I blew the third date rule in waiting to have this conversation. The first and third because we were quickly getting to know each other, so I disclosed prior to the first date, and the other because we had known each other for a long time before we got together, and he already knew I was sick when we started seeing each other. And maybe that’s why it was so easy for me to fall into a relationship with this person, because he already knew I was sick.

I think as much as we would all like to have faith in people and give them the benefit of the doubt, we have to be realistic about the fact that illness is a definite deal breaker, or at least it feels that way to me. And I would hate to see illness get in the way of what could otherwise be a good relationship, but I have seen relationships end over much less, so I guess that’s how it goes.

I am convinced now that the third date rule – which I came up with – really doesn’t work, if the relationship gets to that point. Men these days are relentless. Everyone wants to be your facebook friend, and text and tweet you (get your mind out of the gutter…or maybe not…), and get to know you better by not really getting to know you. And because of this “let’s be facebook friends first” mentality, guys are actually getting access to a surprising amount of information very early on (even before the first date). This is the first time that I’ve considered my blog to be a liability…

But the truth is, I’m not going to censor myself. Lupus and rheumatoid arthritis are a fact of my life. And I guess with the right person, these illnesses won’t be all of who I am. They are only a small part of me. And the right person will be able to strike a balance between the two. Or they won’t be the right person, and they’ll walk away. I guess that is a risk I have to take.

Maybe this post sounds rather doom and gloom, but I’m not convinced that this conversation goes well most of the time. In fact, I think this conversation going well is the exception and not the rule. As tough as many guys claim to be, I’m not optimistic that many of them can (or want to) deal with something like this. Although I’m learning that some can, it doesn’t mean the relationship is going to work out.

Because in most cases, the “in sickness and in health” bit is hypothetical. But in a way, too, is the above conversation. I could go into remission tomorrow. My illnesses could stay the way they are for the next 20 years. Or not. But the truth is, I don’t know… And that’s why I have to be honest and upfront, no matter how much it pains me to do so…

One casualty of illness is that I worry that I am too quick to glom on to guys who are willing to wear the illness hat, or at least try it on for size. It’s easy to see that person as being Mr. Right, even when they’re not even Mr. Good Enough, not even close. The problem is, though, that this acceptance is going to be a huge piece of the puzzle. So it’s easy to get seduced by the idea that someone is okay with the “idea” of my baggage. Because no one that I’ve been with has actually experienced a flare first hand, oddly enough.

I have to wonder, in a very Carrie Bradshaw kind of way: Has illness acceptance become a proxy for chemistry? Has “this is who I am, take all of me” literally come to mean “take all of me”?

I’m curious to know from a male perspective: When would you want to know about health issues like this, and how would you best like the conversation to be framed? Or do you trust the person you’re with to know how and when the right way to tell you is?

And from an illness perspective: What are your rules about this type of thing? And do they work or not?

(Oh yeah, and my super, hot pink medical bracelet? Can’t exactly sport that on a first date…)

“The Etiquette Of Illness”

I read this great little book, “The Etiquette of Illness,” by Susan Halpern. This book offers advice, but isn’t preachy. And some books are just written in a way that is soothing to read – this is one of them. (Thanks to the recommendation from Rheumatoid Arthritis Guy)

“It is the role of the ‘well person’ to reach out. While it can be hard to initiate contact, doing so brings pleasure and solace to both parties” (3).

Lately I’ve been thinking a lot about what I need from people. I’ve been having a hard time dealing with a lot of things in my life, and have really had to explore the relationships I have with others. I’ve realized that while a lot of people have not done a very good job of dealing with my health issues, I haven’t either, mainly because I haven’t known what to ask for, or even how to ask for help. In order to ask for help, you need to know what you need. And that’s a hard thing to do if you don’t really like having to ask for help.

I’m learning that I have to assert myself more, because if I don’t look after myself and my health, no one else will.

“Find the words that give you comfort and teach your friends to say them […] Given the sensitivity around what to do and say, unless the person who is ill speaks out loud with specificity and care about what pleases him or her, no one will ever know” (30, 223).

For me, there’s always the battle between the person that I am and the person I want to be. If it were up to me, I wouldn’t need help, and I wouldn’t be struggling to cope, and I wouldn’t be sick.
But that’s not reality. So the people that I want in the inner circle are the ones who really want to be there (this is, I think, what Halpern calls “the inner sanctum” (234)). The one thing in my life that I refuse to tolerate is disingenuousness and fakeness. If I put time and effort into a relationship, I want it to be real, and mutual.

“Opening the heart as a receiver of love and care makes exchange equal. It is not all one person giving, one receiving. It is the reciprocity of giving and receiving that gives rise to joy” (234).

It’s sad, but some people, whether they’d like to be able to or not, are incapable of giving of themselves unselfishly. What I’ve realized is that help has to come from a place of mutual understanding. And it also has to be unselfish on the other person’s part. It doesn’t really count if they are only offering help because they have ulterior motives or expect something in return.

“Compassion occurs when we open our feelings to the feelings of another person, without judgment, pity, or a need to fix” (219).

I’ve realized that whenever anyone asks me how I am, I’ve gotten very used to saying “good” or “fine.” Not that I want everyone knowing exactly how I’m feeling, I also realize that such vague generalities do no one any real good.

For me, a major “path of least resistance” is being a “yes” woman, even when saying yes comes at the expense of my health.

I was supposed to go to Yale at the end of September to present at a conference for a professor I do work for. The way the trip ended up being, I would have been in New Haven for 30 hours, and taken a total of six flights to get there and back. If that doesn’t spell F-L-A-R-E for me, I don’t know what does. Ultimately, I begged out of the trip a month shy of going, which is not something I would normally do. But I knew that it would be bad for me, and had the potential to derail the semester (which has turned out not to be a very good one, as it is). It was an expensive lesson to learn. But it was an important one. (And the world didn’t end because I didn’t go to this conference, shocking, I know)

“A little response to chronic illness goes a long way” (129).

I think what I’ve come to realize is that you have to let those in who want to be. Now, you don’t want to rely on people so much that they become tired and worn out. But you also don’t want to stare a gift horse in the mouth. For me, being there mostly means that I can call and laugh or cry with someone. It doesn’t mean being on guard 24-7, waiting for me to call or e-mail. But it means being there when I’m really having a hard time of it.

I’m the first one to admit that this is a forever thing. And it sucks. But it is what it is. And, for better or for worse, illness doesn’t just impact the sick person. Whether we know it or not, it impacts everyone that we come in contact with.

One day, I was flaring badly. And “a certain person in my life” picked up the phone and called me. Only my parents had really done that. It meant so much, and yet, my first thought was why. Why was this person doing this? And shortly after, I sent this person a message saying something to the effect of I don’t want you to know me like this.

We’re all afraid of something. And to be so open and vulnerable to someone, to let them see you at your worst, isn’t an easy thing to do. And when actions aren’t met with the desired response, at least for me, I immediately retreat and go inward again, opening myself up to others less and less. There seems to me to be a fine balance between what is and isn’t enough and what is too much.

Lately I’ve had several people make offers of help, and follow up by telling me that they really mean it. It’s interesting that these have all been fellow people dealing with illness. And like I said, I think this is the key. The offers have to come from a place of true compassion. And even if I say no, it doesn’t mean I don’t appreciate the gesture. In fact, I may appreciate the offer more than the action itself. It’s nice to know that there are people who truly do care.

And if someone calls and you don’t feel like talking, I think that’s perfectly okay. I know that when I’m in a bad flare, and I feel like I can bend steel with my teeth, I can be kind of cranky. So that is probably a time when I might say, “I really appreciate your calling, but can we talk another time?” I think whoever is on the other end of the line should understand.

I think this may be the book’s best piece of advice to those who are a part of a sick person’s life:

“Don’t let the loving, lusting, adorable side of your friend disappear” (13).

Recently, a friend responded to something I posted on facebook that the “old Leslie” never would have done something like that. And she’s right. And it’s nice to know that certain people know me that well. That’s all I want. No matter how down and depressed (or sick) I get, I hope that those in my life can always help connect me and bring me back to myself; and can bring out other parts of me than the sick persona. Because, you know, on occasion, I can be a pretty fun person. I’d hate for illness to kill all of my good parts.

“Expressing feelings of gratitude does not make us weak; it may make us stronger […] There is something in the saying yes that carries with it a helpless feeling” (28, 47).

I would like to say thank you to those people in my life who have been there, through laughter and tears, those who have let me tell them that I’m having a bad day pain-wise, etc. Sometimes it’s easy to not consider help, help. To let people do things that seem totally appropriate for the relationship you have, it’s easy to pass it off and not say thank you. Some people may respond, “That’s what friends are for,” or “That’s what I’m here for.” But saying thank you shows those people how much you care and appreciate them in return for all they do for you.

And I’m sure, that inevitably, as my illnesses evolve and change, what I need from others will change, as well…

*****
(Halpern, Susan. The Etiquette of Illness. New York: Bloomsbury, 2004).

“A Dream Is A Wish Your Heart Makes”???

“I’m sorry I can’t help you, I cannot keep you safe

I’m sorry I can’t help myself, so don’t look at me that way

we can’t fight gravity on a planet that insists

that love is like falling

and falling is like this”

- “Falling Feels Like This,” Ani DiFranco

If this is what Walt Disney meant, he certainly had a messed up sense of humor…

I had originally intended this post to be about a rather disturbing dream/nightmare that I had come to have quite regularly. The gist of the dream is that I need a kidney transplant and there is a certain person in my life who appears to be the only match in the whole world. The most distressing part of the dream is that it never gets resolved. I never know the choice the person makes. I haven’t had this dream recently, which is good, as unfortunately, the person that the dream centered around is no longer in my life.

This is the mother of all posts. It’s one that I’ve been trying to get down on paper literally for months now. I have struggled, time and again, about how to write about the personal stuff that has been going on in my life. This is one of those posts that I’ve sat and cried while writing, every time I’ve come back to it. At one point, this post was ten pages long. But neither I nor you nor he needed to be subjected to that. (I even have a word document labeled “Director’s Cut,” with all the fodder that didn’t make it here)…

I’ve realized that while I may have briefly alluded to the relationship, I’ve never “officially” talked about it. I think at the time this was because I didn’t want to announce anything to the “world” until I knew it was a sure thing, which in the end, it wasn’t. And I also wanted to respect this other person’s need to keep things relatively quiet. But in an effort to move on, I’m breaking the silence. This is my magnum opus, my Declaration of Independence (or my attempt at it).

I went to see him on Memorial Day weekend so I’d have place to stay. And I got so much more than that. I never expected to fall in love. It definitely ranks in the top five best weekends of my life. And there was a sea change, and everyone noticed it. But in the end, this certainly wasn’t the fairy tale romance that I’d hoped it would be, though it certainly was something. And it gave me hope, for a time, that things could be better. In fact, that things could be great. I remember that one month, that we were the most connected, both physically and emotionally, no matter what, I couldn’t stop smiling. And I felt like such an idiot. This person even told me that my happiness made me more beautiful. I wanted to be happy for him. And I wanted to be happy for myself.

But all good things must come to an end, and with a crashing halt, they did. And I felt like my world ended for a minute, like it had been made infinitely smaller in a single moment. And it also made me wonder – did I feel this bad when I was diagnosed with lupus and rheumatoid arthritis? But the two aren’t comparable. The world feels different, though, different in ways that maybe only I recognize. Because I whole hog opened myself up to the possibility of something and someone other than myself.

In some ways, the relationship, however short lived, put a lot of questions to rest. Five years of subtext and stolen glances were gone in the blink of an eye. And at the time, it felt right. More than right, it felt good. I guess in some ways, the experience was a gift in that I had only ever viewed this person as a fantasy, but never in a million years would I have imagined we could have gotten together in reality. And I guess we got each other out of our systems. Or at least he got me out of his...

The first night we spent together, we slept together, but we didn’t “sleep” together. It was one of the most intimate moments of my life. I can’t even explain it. I just know that I felt safe and wanted. And for the first time in a long time, I wasn’t worried about the possibility that the world would come crashing down around me in the morning. I felt like the difficulties in my life were worth facing head on because there was someone there who cared about them, too, not because he had to, but because he wanted to (or maybe because I wanted him to).

I know the exact moment that I fell in love with him – and I’ve never even shared this with him. It was when he was sitting on the couch next to me, staring at me like a drunken puppy dog. And despite everything, he was still looking at me that way. In that moment, I felt like he really saw me, got me, in a way that no one else did. And it was in the way that he kissed me goodbye after our first weekend together. It was the kind of kiss that was tender and gentle, but sure and commanding. It could have stopped time, and I think, for a minute, it did. Having to leave and walk away from that was hard, but it wasn’t the end. That has been much more difficult and much less sure. I guess I was supposed to walk away without having felt anything. And he was hoping to fix me in a way that’s simply not possible. I don’t think he had ever thought past the present moment, and what my life would be like without him in it. And as soon as I got visibly attached, he pulled away…

When someone tells you the things they know you need to hear because they know you need to hear them, are they really being sincere?

And I have to ask myself: how many tears can you cry over someone who isn’t crying over you?

There were private jokes, and some of the hard conversations were easy to have. I learned more about him in two days than I had learned in five years. And there was more that I wanted to know. There was a profound feeling of happiness and contentment that I have never felt before. But as good as things were for a time, we also knew exactly what to say to hurt each other. And we both succeeded in doing that, as well. I’m happy that this person is happy, and has found someone that he is happy with. But I also had hoped that we could be happy… together…

I’m grateful to have been shown that happiness and life lurk somewhere deep inside of me, waiting for a chance to escape. But that’s gone now. And I don’t know if I’ll ever get it back.

Maybe the truth is that, that person never existed outside of my own imagination. Maybe I saw what I did because it is what I wanted to see. I don’t want to believe that, but I really don’t know what to believe anymore. It’s hard to move on, even when the other person has in very obvious ways. It doesn’t make it any easier. I think we were both guilty of seeing what we wanted to see, of seeing in the other person a person that didn’t completely exist in reality.

And maybe this is truly the way things are supposed to be. Maybe we are on different pages of the same book. Two people who deeply care about each other, but nothing more… Or perhaps we are two different books from completely different genres, whose stories happened to collide in a verbal stew both beautiful and grotesque.

Illness, and life in general, are like this too. There’s a lot of physical and emotional pain that comes with illness. But there is also a lot of wisdom. And we wouldn’t be people, and we wouldn’t really be living, if there weren’t both good and bad parts. It’s just that some of the bad things take longer to accept than others.

Ultimately, I don’t want a “partner in despair.” And no matter how I was feeling, he managed to make me laugh, and it was the silliest things that brought on these moments of connection, moments that were never had with anyone else. But then there’s the idea that I am permanently flawed in a way that I’m not sure either one of us will ever truly be able to get past. And that’s my fault as much as it is his. I want someone who looks at me and doesn’t think I need fixing.

“I never thought I could love anyone but myself
Now I know I can’t love anyone but you

You make me think that maybe I won’t die alone

Maybe I won’t die alone
What have I become?

Something soft and really quite dumb

’Cuz I’ve fallen, oh, ‘cuz I’ve fall-fallen, oh ‘cuz I’ve fall-fall-fallen

So far away from the place where I started from”

- “Die Alone,” Ingrid Michaelson

*****

“[…] I never thought that I

Had any more to give

You’re pushing me so far
Here I am without you […]”

- “Love Remains The Same,” Gavin Rossdale

And while he was there in spirit, we were never together when I was flaring. And there’s a part of me that wonders if he would have been able to handle that. I have to believe that the relationship didn’t end over illness. And maybe it’s good that it ended when it did so that he never had the opportunity to end it for that reason.

It’s funny because in my relationship prior to him, I found myself flaring all the time. And that was a pretty clear signal to me that, that relationship wasn’t going to work. But I don’t think he ever caused me to flare. And I think that’s something that worried him a lot. If we fought, and I went into an emotional tailspin, would I flare? And if I did, would he be responsible for it?

Maybe the truth is that the first love brings with it the greatest hurt. Because when it’s gone and you know it’s over, there’s no way of getting it back. It’s something that can’t be undone. And it’s especially hard when the other person doesn’t love you back. They say they care about you deeply, but it’s not love. And they don’t think it ever could be…

Why does it feel so bad to want to be a part of someone’s life who will never be who and what you need them to be?

It is in this moment that all of my illness related insecurities come to bare. I don’t think I can handle dealing with this shit by myself forever. And I worry that I’ll have to and I won’t be strong enough to do it. I don’t want to be 40 or 50 years old and have my parents be the ones that are there. I want a person, my person. Someone who thinks I’m worth fighting for, despite the baggage I bring to the table. I can’t look at what my parents and friends have done for me and push it aside. Because they have really come to help and support me. And yet, the one person I most want to be there isn’t, not even in spirit, and I don’t know if he ever was. And this is the part that hurts the most; the want, the longing, the unfulfilled need. The feeling of having been empty and now feeling emptier.

What I realize now, is that I deserve someone to be that person for me, as I will be for them. But I don’t want to mold someone to fit that role because I need them to. They have to want to. When I meet the person that I’m supposed to be with, I’m going to be all in, I’m going to put all of myself into that relationship, because that’s something that not even illness can take away. And I don’t just want this for me. I want to be that person for someone, too, because I know I can be. Because I feel like I have so much love to give. And I would have given it to him, if he would have let me.

Maybe this would all be easier if this was some guy I had met off the street. If there wasn’t the history of knowing him for five years, of doing an on again, off again dance for nearly a year, and for being together for several months. Because what I miss the most is knowing that he’s there, even when he’s not, and not having to be ashamed of calling or e-mailing when I need/want to.

There are a lot of things I miss. I miss his number popping up on my caller ID. But mostly, I miss the feeling that I am not alone in my struggle for survival; the feeling of someone else caring, someone who doesn’t have to care, makes it all seem worth the physical and emotional pain of being sick. It’s ironic because some days, lupus feels easy compared to this. It’s much easier to harbor anger at an invisible foe that you may never truly know than at a real person.

And it truly pains me to say that there is something that has hurt and damaged me more than illness has. Because unintentional hurt can be the worst kind. He thought what he was doing was the right thing to do. My life wasn’t going well and he “felt bad for me.” And I thought that my actions and feelings were right, too. So were we both wrong?

The truth is, the healthy me probably never would have taken a chance on him. I probably never would have opened myself up to the possibility of him and I. But the drawback of risk taking is that when the risks don’t pan out, it hurts worse than before. Because illness magnifies everything. The slights hurt more, but the good feels better than it did before.

He says I can still share things with him without him judging me. But wasn’t rejecting me as a romantic partner the ultimate judgment?

I really thought things could work with him. He is strong in places I’m weak, and I think I’m strong in some places where he is weak. He’s emotionally closed and I’m emotionally expressive. Maybe it never would have been enough for me. I can’t apologize for feeling too much, just as he can’t apologize for feeling too little.

A lot of people said they thought it would be more than it ended up being. And a lot of people said that he was only capable of hurting me. I don’t know if they were able to see beyond the significant age difference between him and I. I guess I was hoping that he would prove everyone wrong.

Do I wish I was still with this person? In some ways, yes. Do I wish I wasn’t sick? Yes. But these “yeses” are non-issues, because they are things that can never be, no matter how much I wish they could be. So, just as I’m never going to be romantically involved with this person again, I’m never going to be “healthy”. And that’s a reality that I have to own up to.

Lately, I feel like I’m undone, coming apart at the seams. I feel like at any minute the final blow will be hurled at me and that will be that. It will all be over. I won’t have the strength to go on. And right now that’s how I feel. I’d like to think that I won’t always feel as bad as I do right now, but there’s no sense that this is going to get easier. And I know it only seeks to negatively impact my future relationships, so if for no other reason than my own sanity, I need to move on. And everyone, including this person, has told me that I do. And it’s easy for him to tell me to move on. He’s the one who dumped me for someone else, not the other way around. So, this post is a large attempt in an effort to do just that.

Just as there are some things that illness can’t kill, there are some things that even failed relationships can’t take away. Like learning that I have the capacity to really love someone else, even if they don’t love me in return. And even when their spurning causes me some of the greatest hurt I have ever known, I am still able to love him as a person…

I’m the kind of person who feels like I need tangible memories for something to be real. But the truth is, what I have is the most tangible thing of all. What I take with me is the person that I am today, a person whose life has been shaped, in some ways, by someone else. I took a flying leap when I decided to let this person into my life as more than a friend. And ultimately, it didn’t work out. But that doesn’t mean I’m left with nothing. What I realize now is that I may have been alone before, but I’m not alone now. Even if this person is out of my life (at least romantically), there are parts of them that I will take with me. If I hadn’t had this experience, I wouldn’t have anything to take with me. And that’s something, no matter how you look at it. For better or for worse, we are impacted by those who are a part of our lives, even if for only a short time. I guess all I want is to know that I meant something in his life, because he knows that in a profound way, he meant something in mine. (And in case you were wondering, this person did read this post prior to my posting it...)

This is both the beginning and the end. Sometimes the cure is worse than the disease…

“Now don’t forget me

Please don’t forget me

Make is easy on me just for a little while

You know I think about you

I hope you’ll think about me too

When we’re older a little slower it doesn’t matter now come on get happy

’cause nothing lasts forever but I will always love you”

- “Don’t Forget Me,” Macy Gray