There Is No "I" In Team

I’ve been pretty frustrated lately by all of the backpedaling I have to do as far as my health is concerned.

I feel like the main problem is that I don’t have a medical team. 

I have a group of doctors that I see, that are responsible for my care, but they are not a team. 

I have a primary care doctor, a rheumatologist, a nephrologist, a gastroenterologist, a psychologist, a psychiatrist, an ear, nose, and throat doctor, and a neurologist.  Some of those doctors I do not see regularly, like the ENT and the neurologist.  But the others I see multiple times a year.

However these doctors exist in isolation of one another.  They don’t talk.  They barely know each others’ names.  And they are in the same, albeit large, medical system.

And this is hurting me.

One hand doesn’t know what the other is doing.  And this often means multiple calls and e-mails to multiple offices about the same issue. 

And lately it seems like nurses are on a power trip and are opting to make decisions without consulting the doctor.  I’ll have another post on this later.

But suffice it to say that I can’t do it all.  I can’t interface with all doctors and get the message across to all the others. 

There is no “I” in team.

Right now I feel like I am a team of one.  And that’s not really working.  One person does not a team make.

That isn’t to say that I don’t have an unofficial team around me, like my boyfriend, family, and friends, who I am sure would advocate for me should I be unable to do it myself.

But I don’t have an official, expert team. 

A group of experts is great, but not when they don’t work together.  In fact, it seems that this can be counterproductive. 

The point here is that a medical team is essential.

The idea of an interdisciplinary team in the medical setting is not a new idea (De Wachter 1976; ).  Neither is considering the patient to be an essential part of that team (De Wachter 1976).

According to one article, “Communication failures are the leading causes of inadvertent patient harm.  Although medical care is delivered by multiple team members, medical quality and safety has historically been structured on the performance of expert, individual practitioners.  Effective communication and teamwork have been assumed, and formal training and assessment in these areas has been largely absent” (Leonard, et al. 2004: i85).

We should also do well to remember that pharmacy technicians are also a part of our medical team.  I’ve had a lot of issues with prescriptions and pharmacies lately.  I was out of town, and because of the holiday, and when my pharmacy reopened, they were out of the medication, so I ran out of medication on Thursday and didn’t get the medication in the mail until Monday.  This is the longest I’ve gone not taking this medication.  I don’t blame the pharmacy completely. 

But my frustration, yet again, is that so much of my well-being is in the hands of others, and that does not fill me with confidence.  And when it is totally out of their hands, it is totally overwhelming for me. 

Lines keep getting crossed, things keep getting messed up, and I feel lucky that I am on top of my care enough to be able to know when errors are being made.

But I also worry about those who are not as much in control, for whatever reason, and don’t know that things aren’t the way they should be. 

I do know that my PCP and rheum do talk to each other, which is a huge relief for me, and has been helpful.  Despite this, my PCP often tells me to ask my rheum or talk to my rheum or try and get in to see him.  And then I get told that I can’t be seen sooner than my appointment that is three months away.  Then I e-mail him directly (and subvert the system) and get in earlier.  Only because I need to see him.    

So how do you create a medical team that is willing and able to work for you?  It’s great to have experts, but experts with disparate goals doesn’t do all that much.  One of my goals for the New Year is getting my healthcare back on track.  That may mean having to find new members of my medical team.  But it definitely means finding a way to get all of my medical professionals on the same page.  Or at the very least, communicating with each other, with my pharmacies, and seeing me as an inherently important part of this so-called team.      

References

De Wachter, M. 1976. “Interdisciplinary Teamwork.” Journal of Medical Ethics 2: 52-57.

Firth-Cozens, J. 2001. “Cultures for Improving Patient Safety Through Learning: The Role of Teamwork.” Quality in Health Care 10 (Supplement 2): ii26-ii31.

Leonard, M., S. Graham, and D. Bonacum. 2004. “The Human Factor: The Critical Importance of Effective Teamwork and Communication in Providing Safe Care.”  Quality & Safety in Health Care 13 (Supplement 1): i85-i90.

Patients Rights Are Human Rights

One of the most trying occurrences during my recent health crisis has been the attitudes and behaviors of some of the medical professionals I have encountered.  While technically, this is nothing new, the degree and frequency with which it has been occurring lately has been incredibly frustrating. 

I went to the student health center for a rogue yeast infection.  It was hard for me to tell what it was at the time because it had gotten so bad, with no obvious sign of improving.  I usually avoid walk-in at the student health center, but in this case, I didn’t feel that I really had the option of waiting to get an appointment.

I have never felt so unfairly judged in my entire life.  I was told that the doctor hadn’t bothered to look at my chart because it was “too thick.”  Then I was refused oral antibiotics because it was deemed that I’m “on too many oral medications already.”  This meant, as many of you with immune system problems know, that I suffered with something for an additional two weeks, when, had I been given oral antibiotics, probably would have markedly improved in about two days.

The reason I didn’t say anything at the time is because I was totally in shock by the treatment (or lack thereof) that I received.  And I was deeply hurt.  I filed a complaint with the student health center, but I guarantee nothing will be done.   

And if I had a dollar for every time a phlebotomist asks if I can bend my elbow any straighter, I’d be so f***ing rich.  I’m so sick of it.  I have arthritis, so no, I can’t bend my elbow any straighter when getting blood drawn.

I tried to see if some note could be added with my information, so that this is something that lab techs will know ahead of time.  But I was told that there’s really no way for them to do that.   

And my veins.  Everyone has a complaint about my veins.

And when my rheum’s office called to tell me I could go back on MTX, the nurse who called left me a message, with my new dose: the oral dose and not the injectable dose.  She left me a message, and I was told to call and let her know I understood her instructions.  And I confirmed what the injectable dose should be.  And the response from her was, “Sorry.  I guess I should have looked at your chart.”

Here in lies the problem.  I have a chart for a reason.  I know it’s four inches thick.  I’m well aware.  And I might just hit the next medical person who sasses me about it over the head with it. 

Ultimately, I don’t feel bad for these people.  I’m sorry if through things I can’t control, your job is made more difficult.  But I don’t feel bad for you.  You’re not the one going through all these things.  I am.  And it is made all the more difficult by me being treated like a leper.  An enigma.  A pariah.  A drain on the system.  A complicated patient. 

It’s my chart, my arms, my veins, my everything.  And when I’m nothing but nice to you, is it so much to ask to be treated with the dignity, respect, and kindness I deserve?  Not just as a patient, but as a human being.

Isn’t it my right as a patient to be treated like a human being?

It’s amazing how quickly you can go from being a human being to being a patient.  And while the treatment should be the same regardless, it’s clearly not. 

There just isn’t room in the system for people like me, people under 40 years old who have significant health problems.  Nobody wants to deal with us.  So they treat us like shit. 

I don’t want the ER to be the first line of defense, but student health is exasperating, to say the least, and my specialists at the hospital are all totally overloaded.

And the bottom line is that doctors, when they need medical attention, aren’t treated this way.  I’ve watched many a time, waiting for my own appointments, where the red carpet is basically rolled out for doctors.   

It’s good to know that there is a Patient’s Bill of Rights.  But it focuses mainly on insurance issues.  It goes nowhere toward addressing the issues of climate that exist for patients in the medical setting. 

Maybe I’ve spent too much time in the medical arena in the last few years, and more specifically, in the last few months, but it doesn’t look like that is going to change any time soon. 

So what do you do when no one will listen to you?  You can fight for yourself to an inch of your life, and get nowhere.  But I don’t want to fight.  I just want to live.

 

Worst Date Night Ever (And It’s All My Fault)

Is illness always in bed, a third party waiting to get in on the action?

I spent this past weekend in the hospital with my boyfriend, spending from around 5 o’clock Friday night until a little after 4 a.m. on Saturday in the ER, and was admitted from Saturday morning to Sunday afternoon.

I had, had pretty severe pain in my right side for about four days. I do sometimes get a pain in the area of my right rib if I am having a flare, but this was not like that, and not in the same place. And the pain wasn’t getting better, despite me trying to nurse it. I knew that going to the student health center would be pointless because if they felt around and saw where I was tender, they would assume appendix and send me to the ER. So in a way, student health would simply have been an unnecessary step.

My boyfriend basically agreed that given my complicated medical history and medication regimen, the only real choice was the ER. So we put aside our Friday night (not) in favor of some time in the hospital, as if my BF doesn’t spend enough time there already, right?

As per usual, it wouldn’t be a medical experience for me if there weren’t some down right ridiculous moments. But that’s how I have to act in these situations, otherwise I think would totally go crazy.

I told the resident that for a body that is rejecting its own organs, it has certainly been good about keeping all the useless ones, too. She told me that was the best line she heard all day. No problem, I love to entertain.

So the running hypothesis was that I had appendicitis, which is what I thought, too. And that because I’m immunosuppressed, my body wasn’t acting exactly like a classic case. So I had an ultrasound, which ended up not even showing my appendix. Then I had a CT scan and was told that I did have appendicitis and would be having surgery. Then a few hours later the attending radiologist disagreed with the original reading of the CT, and that while I didn’t have appendicitis, I did have something going on GI-wise, especially since I had three doses of morphine and very little relief. I won’t give any more details – GI stuff can be downright nasty – other than to say that I have had some GI issues in the past, and that the problem got a bit away from me. I had been having some issues off and on for several weeks and kept saying that I needed to get in touch with my GI doc.

The resident asked how long me and my BF have been married (she obviously didn’t realize he’s only my BF right now). We replied that we aren’t married. She said that it was an awkward moment, and proceeded to tell me that the pregnancy test they did – standard operating procedure – was negative. And I said, well, it would have been a lot more awkward if you would have asked how long we’ve been married – and we said we weren’t – and the pregnancy test was positive. Maybe you had to be there, but it was pretty funny.

And you know how sometimes long-standing advice can come and bite you in the butt, literally? You know how your mother always told you to make sure you are wearing clean underwear? Well, you might also want to make sure that if you are going to end up in the hospital, you aren’t wearing clean underwear that is bright yellow and says “I Love Boys” on it. Yeah, that’s all I’m going to say about that…

The rheumatology people were their usual crabby selves. My rheumatologist didn’t come to see me, but a few people from the rheum clinic did. When they came in on Saturday, they basically said that they felt my hospitalization had nothing to do with them.

I thought that was a bit ridiculous. Because in my opinion, I have lupus and rheumatoid arthritis first. Everything else is secondary. I never had anything happen to me like either of my hospitalizations before I became chronically ill, so to me, this has everything to do with them.

The rheum guy came back on Sunday, and said he heard that I hadn’t been allowed to take my Methotrexate – I was told that because it’s a chemotherapeutic agent, there were only certain doctors who could requisition for it – that whole thing didn’t make a lot of sense, but it was probably better that I didn’t take it. Anyway, in my head I was thinking: Now you care? Now this has something to do with you? Oh well!

I think you can learn a lot from being in the hospital. A few lessons from this latest excursion? It made me realize how much I try and fit into a day or a week. It also made me realize that I much prefer orange Jell-O to raspberry (although any kind of Jell-O tastes like food from the g-ds after being NPO for 34 hours). This is really important knowledge, no? And I think I need to have an “illness” bag packed so I can be prepared if this happens again. You know how pregnant women have a bag packed just in case? I think this probably works well for chronic illness, too, especially since it seems like a few day hospitalization is becoming a annual pilgrimage for me, unfortunately.

So I am, or rather, my illnesses, are a total mood killer. On the other hand, maybe this experience was a litmus test for our relationship. If it was, my BF passed with flying colors. He was pretty amazing.

He spent the entire night with me in the ER, after having gotten very little sleep the night before. He was really calm, which is what I needed, especially when it looked like I’d be having surgery very soon. He also brought me some clothes, a coat to wear out of the hospital since I hadn’t brought one with me, and he even snuck in some food for me when I was no longer NPO. He did this all of his own accord. And he used some of his connections to make sure that I was taken care of.

Aside from my immediate family, I’ve never had anyone take care of me like he did. What would I do without a doctor in the house? My boyfriend, the doctor, that is! I know I screwed up date night. I guess I’ll just have to make it up to him.

(And I am relieved to be going back to my normal role as a patient, the one who takes a bunch of pills and doesn’t always feel good, rather than the one that is confined to a hospital bed)

(And I still may need surgery, but I have to wait to get in to see my GI doc in a few weeks)

(And kudos to my mom for being awesome and helping me navigate the world of adult diapers made for someone the size of a baby elephant)

Running Out

Saturday morning I woke up, and went to take Methotrexate, only to realize that I only had two pills left. I take six every Saturday.

I panicked. I looked at the two pills and contemplated what to do next.

Not take any at all?

Just take a third of my normal dose?

As I started to think clearly, I realized that the CVS that my prescriptions are at is only a few blocks away. So I threw some clothes on and headed out. Luckily they were able to fill my prescription then and there, so
I waited eagerly to get my meds.

I honestly have no idea how this happened, and this has never happened to me before. I don’t think I have ever come up on short on pills at the moment that I needed to take them.

I know I have to let myself off the hook for this. We all make mistakes. And in this case, it was easily rectified.

But where is my head? I knew that I needed to refill my prescriptions sometime during this week, but didn’t realize that I would run out of something, especially Methotrexate, before I planned to refill them.

Has this ever happened to you?

Has it happened when you didn’t have easy access to your home pharmacy?

What did you do?

How important is it to take every dose exactly as prescribed?

There must be room for error, because patients, and even doctors, are only human. We can’t do everything right 100% of the time. It would be nice, but that’s not realistic.

So how do we become the masters of our health domains, considering that we can’t be perfect patients 100% of the time?

A Good Nurse Knows A Prick When She Sees One (And Some Nurses Are Just Pricks)

I try not to take myself too seriously. And I try to focus on the funny, silly, ridiculous experiences that come with being chronically ill, rather than the horrible ones, although sometimes they are hard to ignore. Sometimes, however, we just have to laugh at the funny parts, which brings me to this post.

I’d say that one of the most up and down experiences you can have as a chronically ill person is getting blood drawn. I have to get monthly blood draws to make sure that Methotrexate isn’t getting my immune system too down, and also to make sure it’s not negatively impacting my liver. Aside from this, I have to get blood drawn for appointments, tests, and occasionally, research. If the person knows what they’re doing and hit the right spot, no problem. But if they don’t, it can literally and figuratively be a major pain. So this is to say that I have had, and will continue to have, a lot of experience in the blood drawing department.

In my opinion, a really good nurse will be able to tell if you’ve been poked recently, and sometimes they’ll even be able to spot their own work, or definitely know that they didn’t prick you like that or leave a bruise. So imagine that in a one-week period, I was stuck seven different times. I guess I’m no one poke wonder…

I know that I’m not an “easy stick”. This is something I’ve come to accept. When I go for blood draws and they ask which arm they should use, I hold both arms out and say, “Pick your poison”. Most of my veins are superficial and blow easily. And I’m a small person, so naturally, I have small veins. I’m lucky if they get two tubes out of one stick. I’m a veritable pin cushion.

It’s also weird when nurses and techs say things that are on the list of things you don’t say to a patient. For instance, one nurse, after administering my EKG, asked when I would be seeing my doctor again. Like when are you seeing your doctor, because you need to.

Then another asked what I do for work. But she didn’t phrase it that way. She asked if I’m capable of working. Why, because I told you I have lupus? Or because you see something going on with my heart, on my ECHO, and you can’t imagine how I walked myself in here, let alone get out of bed every day in an attempt to be a productive member of society?

Finally, another nurse says to me, “You look so familiar”. And in my head, I’m thinking, I’m laying here with my boobs hanging out of this gown, with ultrasound goop all over me, and an arm which is about to be shot up with agitated saline. But hey, I get that ALL the time.

And let’s talk about the “agitated saline” for a second. Basically, they inject microscopic air bubbles into your arm, and then they inject saline. This provides contrast and identifies any holes that may be in your heart. It’s not as bad as it sounds, except when the nurse misses the vein and has to stick twice. All the while, I’m thinking that I’m agitated enough as it is, I don’t need agitation flowing freely through my veins.

It’s not just what they say, but how they say it. And one of the reasons I’ve stuck with the doctors that are currently on my medical team is because none of them are alarmists. And that’s what I need. I don’t need someone who is going to make me nervous by saying or doing stupid things.

So why is it, that as patients, we feel compelled to apologize for being hard sticks or for asking too many questions? Why don’t nurses ever feel compelled to apologize for their tactless behavior?

Today, I went for my monthly blood draw. The phlebotomist asked me my birthday and I said, “8-11-85”. She said, “Happy birthday”. I said, “Thanks, it’s tomorrow”. She proceeded to argue with me, “It’s today”, and I said, “No, it’s tomorrow”. The tech next to her said, “How much longer are you going to argue with her? Today’s the 10th”. And then the other tech said to me, “Are you really sure you want her to draw your blood?”

That’s exactly my question…

When you’re chronically ill, blood draws become routine very quickly. But, seriously. As patients, we allow these people to have way more power in our lives than they deserve. And lab techs simply see us as things to prick. Because we see them for such a short time. They don’t see the person behind the needle, the human instead of the disease.

These experiences are frustrating, although it is pretty humorous that someone argued with me about when my birthday is. After all, I should know, right?

So I have to wonder: when we stick out our arms, are we sticking out a whole lot more than that?

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.

Patients For A Moment, Vol. 1, No. 7

Don’t hate me, but I’ve decided to have a little fun with this edition of Patients For A Moment and pay homage to Michael Jackson. I’ve organized the submitted posts around several popular MJ songs.

Why? Well, aside from the fact that MJ can be considered a musical genius, amidst other questions about his character and past, the most interesting thing to me is whether or not Michael Jackson had lupus. So I’m not making any judgments here for or against MJ as a person, but the idea that he may have had lupus makes a lot of sense and resonates with me, a fellow lupus sufferer.

So all that aside, on with the show…

*****

“ABC”

“[…] ABC

Easy as...

123 […]”

Since it’s back-to-school time, I figured I would open this edition of PFAM with a back-to-school themed section.

Chronic illness is, above all, a learning curve. There are lessons that undoubtedly come out of, and are learned from, the chronic illness experience. Some of this knowledge is about ourselves, some is about others, and some is a combination of the two.

Jenn from Fibrologie tackles a topic that is important to myself and other students, as she addresses the pro’s and con’s of utilizing the “Disability Office On College Campuses.”

Helen at Pens And Needles takes heed of her own experience with juvenile arthritis and offers “5 Pieces Of Advice For Parents Of Children With JRA.”

Jenni Prokopy at ChronicBabe offers up “30 Things You May Not Know About My Illness: Fibromyalgia,” in honor of National Invisible Chronic Illness Awareness Week (which is September 14 to 20, 2009).

Lauren at Novel Patient explores the positives of Art Therapy, even when she’s not feeling her best.

“Don’t Stop ‘Til You Get Enough”

“[…] Keep On With The Force Don’t Stop

Don’t Stop ‘Til You Get Enough […]”

While illness might stand in the way, these patient bloggers suggest ways of moving beyond.

Barbara Olson at Florence Dot Com laments the time “Before There Were Rapid Response Teams,” when her involvement in her son’s care was not seen as being an asset to his medical team. But she was undeterred, and suggests that others should remain steadfast in their convictions, as well.

Stephanie over at Head Wise discusses the difficulties of admitting weakness and asking for help in the post “The Falling Of Pride.”

Kate Burton from the blog After Cancer, Now What, looks at how insurance companies try to charge patients above and beyond what is their responsibility to pay, in the post “Billing In The Balance.”

“Heal The World”

“[…] Heal The World

Make It A Better Place

For You And For Me

And The Entire Human Race

There Are People Dying

If You Care Enough

For The Living

Make A Better Place

For You And For Me […]”

Simply put, where there are patients, there are also doctors… (and unfortunately, that’s not always a good thing)…

Kairol Rosenthal at Everything Changes asks an important question of patients: Have You Ever Fired A Doctor? She suggests that there are different rules when it comes to making the decision to fire a primary care physician (PCPs) as opposed to a specialist.

In the post, The Right Stuff, Rachel B at Tales Of My Thirties talks about the importance of achieving balance between everyday life and illness.

Lisa over at New Knees For Lisa asks the question, “Who’s Between You And Your Doctor?” in her post about the power of insurance companies and the perils of the medical marketplace.

Lisa, the Queen of Optimism, praises her primary care doctor, while she laments the poor treatment of a specialist, in the post “Exam Report By Patient Q.”

“I’ll Be There”

“You and I must make a pact

We must bring salvation back

Where there is love, I’ll be there

I’ll reach out my hand to you,

I’ll have faith in all you do

Just call my name and I’ll be there

And oh – I’ll be there to comfort you […]”

Several of the posts address the importance of other people in the chronic illness experience.

Laurie Edwards of A Chronic Dose explores the uniqueness of the online chronic illness community, and suggests how much sweeter in-person understanding can be as a result, in the post entitled “Beyond Memes: Public Versus Private.”

Aviva over at Sick Momma writes poignantly about how difficult marriage can be, and what it takes to keep a marriage together despite chronic illness in the post “On Marriage & Chronic Illness.”

Maureen Hayes from Being Chronically Ill Is A Pill reminds us to keep our caregivers in mind and to appreciate all they do, in the post “The Caregiver Role.”

Barbara Kivowitz, In Sickness And In Health, shares one reader’s story of the frustration and pain that can ensue in being a caregiver, in the post “Well Spouse Caregivers: Do You Ever Say, ‘Enough!’.”

*****

Hope you enjoyed this edition of Patients For A Moment.

And since the show must go on, the next edition will be hosted by Kerri at Six Until Me.

“Patients For A Moment,” Third Edition

The third edition of “Patients for a Moment” is up at Duncan Cross. Be sure to check it out.

Next week it will be hosted by Kairol Rosenthal (Everything Changes). You can read of Parts I and II of my review of her book.

I’ll be hosting “Patients for a Moment” on September 9. More on that later!

“Everything Changes,” Part II

“[…] Drink to all that we have lost

Mistakes we have made

Everything will change […]

- Gavin Rossdale, “Love Remains the Same”

In reading “Everything Changes,” there is one chapter in particular that stuck out to me. It is a chapter that I have circulated amongst family and friends – Chapter 3, “Single” – because it touches on a very unresolved part of my illness experience that I have been trying to make sense of.

I have been struggling for a while, feeling like I needed to write a post about sex/relationships, but it never felt like the right time, until I read Kairol’s book. And I’m trusting that my readers will not judge me, or at the very least, will not stop reading because of the details of my life I am about to share with you.

“In my first two years of living with cancer, the number of men I slept with had more than doubled” (48).

When I read this sentence, I stopped cold. This line got to me because it is me – the same thing happened to me in my first two years of living with lupus. Well, if you go from zero sexual partners in 23 years, to one or two in just a few months, it might not seem like much, but for a straight-laced person like me, it caused quite a stir.

The way the people around me were acting, you would have thought I had murdered someone. Maybe murdered myself. But this has nothing to do with self-respect. Because the truth is, I was being judged on terms that no longer applied to me. Yes, the “old” Leslie, the “healthy” Leslie, would probably have never done any of that. But it was about feeling good in a single moment, one moment without pain was worth far more than the potential consequences of my actions. Feeling wanted, needed, loved (doubtful), and even “normal,” was something that I yearned for, and that was the only place I found it. To be held, to not feel alone, to feel like someone else in the world other than myself and my immediate family had a stake in all this, that was what it was about.

Illness has, at times, clouded my judgment and filled me with a sense of urgency that I never had before. Because the fact is, illness is a major head-trip. If you’re not fully secure in who you are as a person, there’s no telling what will happen.

Kairol quotes one young adult cancer patient:

‘Cancer makes you feel really alone, and you just want to be held and feel loved. Or maybe it is a coincidence, and I’d just really want those things right now even without cancer, and it’s just part of being twenty-four. I want to matter to someone else. I want to feel like someone is thinking about me. Since being sick, I’m just looking for a bit of stability, and I think maybe having someone else to love me is it. You can’t control life so maybe you can just date and control that, but you can’t control that either’ (46).

When I first got really sick and no one could figure out what was wrong with me, I didn’t tell anyone, but the biggest thing I was concerned about was that I was going to die a virgin. And somehow, in my mind, this singular event seemed insurmountable.

I can only imagine the reaction had I ever expressed this fear out loud. It would probably have gone over as well as telling my rheumatologist that I didn’t want to be on prednisone because it made me fat and moody. A 40-something man certainly can’t understand where a 20-something woman is coming from in these terms – to him it makes me seem shallow, ridiculous, and heaven forbid, noncompliant (probably the worst thing in the world a patient can be labeled). Because apparently, when you are sick, you aren’t supposed to think about “normal” person things. You’re supposed to transcend all that, and see that life as a mere mortal is fleeting and fragile, not something that should be squandered away worrying about the things you haven’t accomplished. Just like I didn’t think anyone around me would understand that the fear of death was overshadowed by the fear of not having lived. So, when, in a moment of no thought, I decided to end my relationship with celibacy and make sure that dying a virgin wasn’t a possibility, it’s no wonder that the people in my life, the healthy people, didn’t understand the urgency and all of the emotional work that went with it. It wasn’t about sex. It was about what came with it, what came after, and unfortunately, what was very short-lived.

I used to be the one that people envied for having my shit together. Now I’m the one fighting for control of just about everything. I don’t feel like the envied one anymore. And if the people in my life haven’t realized that this isn’t about morals or character, that it isn’t about being that kind of girl, then they can get the hell out. Because if you haven’t been sick, I don’t really think it’s your place to judge.

I think when healthy people hear about a sick person engaging in behavior uncharacteristic for them, the first thing that comes to mind is risk taking. Oh, that person is sick or dying, they feel like they have nothing left to lose. But it’s not about taking risks. It’s about living, and attempting to feel like you matter, like life is worth fighting for.

It wasn’t until I turned to a complete stranger for support that anyone in my life realized that I needed anything at all. And this is my own doing, because I was scared and confused, didn’t know what to ask for, and didn’t really want to have to ask for anything at all. But the truly ironic part is that it wasn’t until this incident that anyone in my life realized how unhappy, how depressed, how scared, and how alone I had felt for nearly two years, and how truly nonexistent my coping had become.

There were a few people in my life who applauded these efforts, who said it was about damn time. But what I really needed, was something that I rarely got, which I think could only come from other sick people, is to understand that it wasn’t about sex. It was about having lived my life a certain way for 23 years, to get burned by illness, and to be left feeling like I needed to refigure things out. So I started with the new, with the untouched experiences in my old life that had hung over my head for years, thinking maybe that’s what was missing. And what I realized, is that what was really missing was a part of myself that no one, other than myself, could give me.

Kairol talks about what it’s like to find love in the face of cancer. Finding love is hard enough. Finding love in the face of illness is definitely something to envy and hold dear, if and when you find it.

Kairol quotes another patient:

‘Be a little selfish and don’t feel guilty. Tell people how you feel and be open. Remember to tell people that you love them. Don’t play games, don’t be fake, don’t try to be tough all the time’ (55).

And she, herself, says:

“[T]he most remarkable cancer patients are not those who are climbing mountains but those who have found a way to climb into bed at night and be honest with themselves about staring fear in the face” (236).

More than anything, “Everything Changes” made me realize that I have yet to really grieve about my illnesses. I tried to stay strong for everyone else around me that I forgot that maybe being strong for myself means not being strong at all. Maybe some of us never come to terms with illness. Maybe we remain forever wondering why we picked the short straw, or why our genetic makeup failed us. What I realize now is that anger – at ourselves, at G-d, at the world – is a necessary part of this process.

I have to thank Kairol for unintentionally giving voice to my story. I could not put words to this story until I read “Everything Changes.”

And I know I have wonderful readers, and I know some of you worry about me often. But I want to assure you after reading this post that I am currently working very hard on trying to be okay…

“[If] a broken heart caused cancer [or lupus, or any other disease] […]” (154), then all my friends would have understood my situation far better than they have. If illness could be explained in terms that even healthy people could really, deeply, intimately understand, well, maybe none of this would have happened in the first place. But I am attempting to live with no regrets, and to not beat myself up for the mistakes, er, I mean choices, I have made.
*****
(Rosenthal, Kairol. Everything Changes: The Insiders Guide to Cancer in Your 20s and 30s. Hoboken: John Wiley & Sons, 2009.)

“Everything Changes,” Part I

In the words of Pat Benetar, “We are young, heartache to heartache we stand.”

But illness, not love, is a battlefield…

I’d be remiss if I sat here and said that cancer and lupus, or cancer and any other chronic illness are identical, because they’re not. But the book, “Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s,” by Kairol Rosenthal, helps to shed light on the commonalities of experience that do exist when you are young and ill.

“A life that appears freakish, bizarre, and extremely unlikely to the outside world can suddenly become normal to you because, really, there is no other choice but to move forward” (14).

The book talks about illness as a “second job,” and I think that’s completely true. Illness takes up time and energy in ways that no one else realizes. It’s unfortunate beyond words that anyone has to get cancer or lupus or any other illness, but as “Everything Changes” shows, it is especially devastating to young people. I have to concur with Kairol that this is an important, invaluable, and absolutely necessary point to get across to anyone that will listen. Young people’s symptoms are taken less seriously (I’ve been there, I know), illnesses are diagnosed at later stages, and illness impacts more than just the physical.

“At our age, death is what happens if you OD, or you drink and drive, or do something stupid that you could have prevented. It doesn’t happen to you because of forces you can’t control” (22).

So I’ll say, because I’ve been asked before, lupus is not a death sentence. But it’s not a walk in the park, either. I know illness has changed me, probably even in ways that I’m not aware of. I have come to terms with the fact that the life I had planned for myself pre-lupus is not to be, and that everything is different now. Everything has changed. But I think there is a lag, and many of the people in my life are still trying to come to terms with the new me (more about this in my next post, “Everything Changes,” Part II).

This book made me feel like it was okay to embrace my bad moments – when I’m too depressed to get off the couch, or I’m kicking the fridge, saying “stupid lupus, stupid everything, stupid life” (and yes, I have done that before – why the fridge? I don’t know).

I would hope that because of our experiences, we have all evolved beyond the who has it worse mentality. This takes me back to an experience I had early on. I was receiving solumedrol infusions. I was very green at this point in the process, so I was trying to ask the infusion nurse if I was allowed to listen to my IPod. I guess she didn’t hear me, but the girl next to me, who was receiving chemo, told me that I could do whatever I needed to get through it. I was very confused, thinking to myself, you have cancer, why are you comforting me? But I think this strikes at the heart of the matter. If as sick people, especially as young people, we don’t get each other, no one else will. And this experience is one that has remained at the forefront of my mind. Being partners in illness is no small matter.

It is a wretched and lonely feeling when our lives stump and bewilder those to whom we turn to for comfort, solace, information, and support. It is utterly dumbfounding when our lives become so foreign to us that even we do not know how to best comfort ourselves” (10).

I really appreciate this book for its raw, real quality, and for the honesty that it portrays. It wasn’t easy for me to read. It often struck a cord in ways that nothing else I’ve read has. I’d find myself reading and crying, realizing that I had felt like the only one in the world to feel this away about illness; to be angry and pissed off, to feel that I had bargained with g-d and lost, to feel completely and utterly alone.

“People talk about learning to live in the moment. There are times when my present moments shine like diamonds and other times when they are stinger sharp. I think I know well how to live in the moment, and I also know how to vacation in the rich recess of escapist daydreaming. Right now, I don’t want the moment. I want to see a future. Some days I feel tethered to a six-month calendar, and I want to see farther and bigger into the distance” (239).

Illness is a very personal experience, and for most people (bloggers not included), it is usually a very private one. By letting the reader intimately into the lives of young adults with cancer – a picture that has rarely been portrayed elsewhere –this book highlights what it’s like to be a young adult, on the verge of independence, suddenly being thrown back into the hands of your parents. It explores what it means to need people when we don’t want to rely on others for anything. And it highlights, that regardless of disease, with illness comes a profound sense of change that can rock a person’s foundation to its very core.

*****

(Rosenthal, Kairol. Everything Changes: The Insiders Guide to Cancer in Your 20s and 30s. Hoboken: John Wiley & Sons, 2009.)

“Patients For A Moment,” Round Two

The second edition of “Patients for a Moment” is up at Duncan Cross. Be sure to check it out.

“Patients For A Moment”

I wanted to let you all know of a new blog carnival, “Patients For A Moment” (PFAM), that is up at Duncan Cross. PFAM is a patient-centered/oriented blog carnival. Duncan suggests that the benefit of providing an outlet for patients is, “The more we’re able to engage and communicate with one another, the better off we’ll all be.” I think that’s totally true, and Duncan has done an awesome job! I’m also honored, but a little embarrassed, that Duncan has given me “pole position” for my post, “The Continuum Of Disclosure.” So be sure to check out the first edition, and consider submitting for the next.