Worst Case Scenario...Maybe Not...

Yesterday I had an appointment with a new doctor. I believe we are on Dr. H at this point, although I honestly don’t remember anymore… So Dr. H it is…

Dr. H is an uber-specialist. What do I mean by that? She comes highly recommended. I’ve only ever heard good things, and she is nearly impossible to see. It was Dr. C, my rheumatologist, who got me an appointment with her.

Dr. H is a gastroenterologist. I started seeing Dr. D (when I first got sick), also a gastroenterologist, but he was a liver specialist (and it turned out my liver was fine), and Dr. H is known for all things related to the stomach/intestines.

I’ve been having various gastrointestinal issues for a while now. Some that I’ve tried to ignore, some that have gotten progressively worse. It appears that the main concern, as it often seems to be, is that one autoimmune disease tends to bring others with it. So given my history, there is the potential of something autoimmune going on beyond lupus and rheumatoid arthritis, related to the gastrointestinal area.

In the back of my mind, for me, the worst case scenario regarding this appointment would be being sent for a colonoscopy. And, well, that’s exactly what I got.

Now I know, in the grand scheme of things, this is a simple outpatient procedure. Drinking some gross stuff, mild sedation, and two to three hours of my life. That’s it. Easy-peasy.

But I don’t know…

As the woman at the check-out desk attempts to schedule me for the endoscopy and colonoscopy, the power goes out (seriously – I swear, I couldn’t make this stuff up if I tried).

Is that a sign that I should run away with my innards still intact and unexplored?

In the end, I don’t run. I sit there, on pins and needles, thinking how ironic it all is. The nurse is being super nice to me because she knows the procedure she’s about to schedule me for is usually reserved for people at least twice my age.

And it’s ironic that it’s the age factor that bothers me the most, and not the fact that someone’s going to stick a camera up my ass…

The good thing is that Dr. H seems super nice, and she will be the one to do the procedures. In many ways, it seems like this is the most prudent thing to do. But I’d be lying if I said I wasn’t nervous and apprehensive about this, because I am.

The whole lack of control thing definitely comes into play here. As the education nurse reviewed all of the paper work and information about the procedures with me, I laughed to myself at the fact that it says you shouldn’t try to walk home from the hospital after a colonoscopy (go figure!).

But that would be me. I’d probably try to walk home from the hospital just to prove that it can be done. But alas, they won’t start the procedure if your designated driver/responsible adult isn’t present and they won’t let you leave without them, either.

So there it is. This is going to be good. It’s going to be great. Well, maybe it’s just going to be fine…

“Below Zero”

It’s just about two and a half weeks into the semester, and already I’m feeling exhausted and drained. I received a link to the following documentary, by Claude Parker, from the leader of one of the support groups that I am a part of. The documentary is about living with lupus and rheumatoid arthritis*.

One of the women suggests that having lupus and/or rheumatoid arthritis means that you are always starting “below zero”. You are always starting at a “deficit”. And I think this is a very fitting way to describe what it means to be dealing with such illnesses. No matter how much sleep I get, or how much or little I do, I’m always exhausted. I’m always relying on my reserves to get me through. And sometimes my reserves run out before I want them to.

All of this is to say that I am working extra hard to stay rested and not get too run down, so I can avoid getting sick in the midst of what is promising to be a crazy flu season.

And with a new school year (or semester), comes a new group of people to decide whether or not to disclose to. Because of the things I’m hearing about students getting sick already, and the potential of widespread illness, I do plan to disclose to my professors that I am chronically ill, and in the event that I do get sick, it could hit me harder than it might hit other people.

I hate having to operate on “what ifs”. It makes me feel like I’m sealing my fate to get sick by saying it. But on the other hand, I’ll be in worse shape if I don’t say anything, and I do end up getting sick (and have to miss school).

Right now, I feel like I’m at a double disadvantage. I start out at below zero because of lupus and rheumatoid arthritis. And I’m also at below zero because I’ve hit my limit. Right now, I feel as if I am below zero in every way possible…

I’ve realized, given recent events, that much of my time in grad school has been spent losing sight of what’s really important – me. I matter, and I’m worthy, and there are no letters in the world behind my name that can live up to that. I have to do that for myself. And I’m not sure I can do that here.

I want to live my life with no regrets. I don’t want to make the same mistake twice. And when I do make mistakes, I want to learn, grow, and become stronger as a result. Right now I’m unhappy. I am full of internal conflict, and I feel like my insides have been twisted together in knots.

More than anything, I want to be true to myself. And that means that in the end, I want what I do to improve the world. I want what I do to matter. And I want to be a good person and matter to others. I didn’t come to grad school so that I could get published in the top journals. I came to grad school so I could help heal the world. But in order to make a difference in the world, I have to heal myself first.

I’ve also hit my limit in fighting with myself. I’ve tried really hard over the past few years to strike a balance between my school and personal life. And not only have I failed, but others have failed, as well.

It has come to my attention recently that there are people who think they know what’s going on in my life, who absolutely don’t, even though they think they would like to. And I’ve found out that there are other people who ask my friends how I am doing or if I am okay. It’s funny because I never knew these people had any idea what was going on with me (and I’m not sure they really do). You know, I’m not going to volunteer that I am ill to everyone in the sociology department, in the context of the department. But if anyone ever came to ask how I felt or how I was doing, I surely would have answered them and provided them with any information they wanted. I don’t think I’ve actively tried to conceal being ill. I just haven’t been “out” to everyone because the response I’ve often received has been negative, telling me I shouldn’t aspire to an academic career, or that I’ll be a more “empathetic” sociologist because I am sick. I wonder how differently I would feel about things now if more people had actually made an attempt to care. I wouldn’t feel so alone, and I probably wouldn’t feel as conflicted as I do. But one thing is for sure. I don’t want to be here right now.

I know that the decisions I currently face are difficult ones. But I am confident that I will be a stronger person having asked myself and attempting to answer the tough questions. I have always delighted in proving others wrong when they have doubted me. But I realize now that, that is not a sufficient reason for staying in grad school. Finishing simply to spite those who suggested I couldn’t or shouldn’t do it is not a valid reason for spending at least three more years at a place that I feel does not respect the person that I am or the person I hope to become.

I don’t think leaving permanently is an option. There was obviously something about sociology that spoke to me, my first day of my freshman year of college, and there was something about sociology that I kept coming back to, no matter how crazy or difficult things were as an undergrad. I had hope then, and I felt like what I was doing mattered. So what gives now?

I found out that I passed my preliminary examination. While this is something that I should be celebrating, I’m not. This monumental event is overshadowed by sadness and confusion. Do I belong here? (I mean, I passed my prelim, right? That says something) Did I make the right decision in deciding to go straight to grad school, and not stopping at all through illness? Sure, I’m happy that I passed. (I was so worried about failing, that I was nauseous while preparing to open the envelope) But in the back of my mind, I also think how much easier the decisions I face would be if I hadn’t.

I feel awful voicing this. It makes me sound ungrateful about the opportunities I have been given here. And that is certainly not the case. But in order to feel accepted and approved of, a person shouldn’t have to conceal who they are, or feel that they have to squelch something that is so much a part of their life.

Living a double life has always been exhausting, but these days, it’s more than that. It’s taking energy that I don’t have to give…

And I know that a lot of what is going to come from my friends is that I’m stronger than I give myself credit for. And I’m sure they’re right. But illness has also taught me that sometimes being strong means knowing when to say “I can’t”…

* Even if you don’t have lupus and rheumatoid arthritis, I would recommend taking a look at this documentary. It’s very moving.

Guest Blogger: Maria Pfeifer

I think sometimes other people say things far better than we are able to express them ourselves. Today, I’m happy to share my blog with Maria Pfeifer. Maria is a fellow blogger with lupus. She is the coordinator of “My Life Works Today! A Living, Learning and Lupus Network.” For more information, visit http://mylifeworkstoday.com/. When Maria shared this post with me, I was struck by the sheer honesty of it. And I think she expresses feelings and brings up issues that many of us face, but are unwilling to admit to. Without further adieu, I give you Maria…

*****

I have had a rough couple of days. With last week’s remembrance of those we lost on 9/11/2001, it all seems so trite and embarrassing, really.

I have noticed a change in how I respond to events, circumstances and even people that are in one way or another ‘threatening’. Not the obvious stuff like imminent danger or in-your-face reactions. I’m talking about the uncomfortable, unseen and unnecessary conflicts that I’m feeling less able to avoid these days.

I thought not having control over my immune system’s erratic responses was going to challenge me the most. What has happened, over time mind you, is that I’m feeling more confident in not having health care in case something happens to me, and more vulnerable to forces around me that are as deceiving in their ‘beneficial services’ as my immune system!

For example, the internet. I have been struggling to figure out how I really feel about it. Having the access to information, people and opportunities is very important to me. The problem is, everyone who is out there to make a buck or interfere with what I want to accomplish knows how important it is to me. This isn’t new – I realize that. What concerns me is just how dependent I’ve become on having it and how easily my life comes to a screeching halt at the very hint of viruses, hackers, server failure, or my own operator stupidity. The reliance on Twitter, Facebook and other sites to affirm that what I want to say and do is dependent upon approval, Retweets, friend/follower acceptance and requires constant input. Or does it?

Blogging has become a valuable source to connect, find and discuss issues pertaining to lupus outreach – what I do. Lupus is not just what I have - it is what I do and THAT makes it a part of who I am. While doing the usual maintenance and management work, I noticed the ever-present theme of not being able to write. Why? If it is so important to do and be what I see myself accomplishing, then what makes it so difficult? To not blog doesn’t feel like an option, and I seem to have developed a perverse reliance on Twitter, Facebook and other sites to affirm that what I want to say and do is dependent upon approval, RT’s, friend/follower acceptance and requires constant input. How did that happen? I consciously know better, yet I have allowed this seemingly fun and available medium to communicate become toxic to my very being.

Answering the phone – I just don’t do it anymore. Yes, I screen – otherwise I would be up every ten seconds. I have put myself on lists only to have them hitting my cell phone, too. The constant email spam is easier to deal with, but both phones have become more liabilities and nuisances than they are helpful for me. I resisted a cell phone for years and still cannot justify the cost only to say that at least I can find my kids easier in an emergency.

The healthcare debate. Community Town Halls, media coverage of all forms, my representatives in who I have placed a great amount of trust to know what I need. The insurance and pharmaceutical companies. Just the other day, I received a bill from a physician’s assistant who saw my youngest for a physical to play volleyball. I learned that my daughter received a vaccination I had already refused to have given to her. There were tests ordered for EKG’s and ‘thorough’ lab panels due to concerns about extremely high cholesterol (229 at 14 years old?!) and an irregular heartbeat that has never been detected before. Yet, she was given a clean bill of health to play at that level knowing these concerns. Huh? I went in and questioned the reasoning, was assured I had it all wrong and walked out of there without agreeing to any tests – the P.A. finally conceded that a ‘watch and wait for six months’ would be “fine”. Yeah, I know. Imagine how much money I saved and how little you got kicked back to you. Since when did receiving proper health guidance become a competitive sport?

I firmly believe in the “less is more” approach to living. The problem is that I am finding that I have less ability to choose what I want and don’t want to bring in to my life. I want to decide whether I will pay the bill on the 15th or the 30th...living so close to the edge requires flexibility. Yet, I can no longer go to my dentist of 20+ years with good payment history – I have to pay up front before anything is done. I have had my credit card for about 27 years with the same company – I have been an excellent client, yet I closed it because they decided to ignore my history and make that added option ( if things got rough) into a threat to my financial survival.

There are countless ways in which I am feeling more pressure to see the potential harm that these ‘helpful’ sources can cause me – and I am losing any ground in avoiding them. If banks go 100% online (they are now beginning to charge for using any paper), then I have to have the internet. If I have the internet, I am open to a whole lot of people out there looking at their own needs, not mine. If I go through my days having to watch my back to thwart something coming out of left field, I physically respond causing my lupus to flare. If I flare, I have no healthcare to help me through it. If I loose the health I have, what good is what I do and who I am anyway?

I thought losing control over my health was enough to make me lose sight of the person I wanted to become. Today, I am getting the feeling that having lupus was only the beginning of more to come. Gloom and doom aside, I know there is plenty of joy in this world to be had, but I am getting so tired of having to dig for it as deeply as I seem to be. The remembrance of 9/11, a week ago today, reaches farther than that single day eight years ago – we need to recognize our true vulnerability and how we are not the country we used to be, nor are we truly the top of the food chain…

Just ask any virus you come into contact with…

*****

Thanks, Maria, for sharing your insights with us!

“The Enemy Is Your Body”

This past weekend was a rough one. I did the lupus walk, which I wasn’t really looking forward to, and a few hours later, I found out that a fellow graduate student in the sociology department unexpectedly passed away.

It’s hard to write about both of these topics simultaneously, but they are related…I promise…

First, I will say that I am conflicted about these walks. On the one hand, I am grateful that at the present moment I am healthy enough to take part. However, the whole celebratory atmosphere is a little too much for me to handle.

What exactly is it that we are celebrating?

The woman organizing the walk called me a few weeks ago to introduce herself, see if I needed help fundraising, and to ask if I was “looking forward to the walk.” Now isn’t that an oxymoron? Am I looking forward to a walk that I wouldn’t be doing if it weren’t for having a disease that I don’t want and didn’t ask for?

I’m not asking for pity here. But is this really a serious question? How am I supposed to answer that?

The walk, itself, was good. It was nice to push myself to attain a physical goal – to do the full, three-mile walk. I know for some people that’s nothing, but for me, it’s a lot. We really lucked out, it was a gorgeous day, and the park where the walk was held was absolutely beautiful.

The only problem with the walk was the doctor from U of M who spoke (keep in mind this walk was not sponsored by the University (as far as I know), and was in fact held near where my parents live). The doctor kept digging deeper and deeper into sentiments that I can only describe as anti-patient. One thing said was that if patients are so interested in new drugs specifically to fight lupus, they have to be willing to enroll in clinical trials. Yes, because donating our bodies to science is of course the answer to all of the problems in the world. I think not.

The other thing said, as the title of this post suggests, was that “the enemy is your body.” I have a hard time with this for several reasons. First, if my body is the enemy and the point is to destroy/kill the enemy, well, you know where I’m going with this… Also, environmental factors, among other things, have been implicated in many illnesses. Therefore, the enemy actually lies outside the body.

Honestly, I was really tempted to tell this person to shut the hell up and get back to the lab where they belong. I know, I’m being blunt, but this is the exact sentiment I’ve been trying to get out of my own head for the past two years. I am not to blame for my illnesses. I did not cause them. And I couldn’t have prevented them. And it’s insulting, and a sad reflection on the medical system that this is the way that doctors view their patients.

I actually think that the enemy is a medical system that treats 20, 30, and even 40-something patients as if they are immortal. Serious symptoms are downplayed, diagnoses are made at later stages of illness, that could be dealt with, but are instead found much too late.

The enemy is a medical system that despite its advances, has not advanced far enough. New strains of diseases are found, worse than the last, complex illnesses evade diagnosis, and illnesses that are known but not well understood evade cures.

The enemy is also an insurance industry that is not available to all. HMOs and managed care organizations that require referrals, increase wait times, and create an ambiguous chain of command - that is the enemy. Our bodies are our bodies. Our bodies are not the enemy.

*****

So how does this relate to the devastating events that occurred this past weekend? The person that passed away was an incredibly intelligent, talented, 32-year-old mother of two young children. This is one of those times when all you can say is that life isn’t fair. I was at her dissertation defense at the end of May. And now she’s gone… Apparently, she was diagnosed with inflammatory breast cancer two weeks ago, began chemotherapy on Friday, and died on Saturday.

While I’ve heard stories on primetime news shows about people who are diagnosed with rare, aggressive forms of cancer and die very quickly, I’ve never actually known someone that, that has happened to. And I preferred not knowing anyone.

I think the immortality complex that plagues the medical system is something derived from society-at-large. In grad school, for instance, we are made to push ourselves through an academically rigorous program, sometimes comprising ourselves and our health because we are young, we are supposed to push ourselves to the bone and never look back. So symptoms are attributed to stress and ignored until they reveal themselves to be much more than we bargain for. The main point here is that there is too much needless and senseless death and destruction of life happening. Young people are not supposed to die from horrible diseases.

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And as I’ve been reading in the disability literature about “poster children” and “super crips,” I get the sense that the people who are ill who take part in these walks are those who are either exceptionally high functioning, or exceptionally low functioning. I think the majority of people in the middle, who fit the “norms” of the illness, are left out.

The human element, which walks and telethons so much attempt to capture, is, I think, lost in the shuffle. The body is reduced to being seen as the enemy, as a set of symptoms that make up an illness, not as inhabited by a person who has thoughts, feelings, hopes, and dreams.

I don’t want to say that I lost sight of the big picture, but I think we all tend, at times, to crawl into our own little, insulated world, and this person’s passing made me climb out of mine. I don’t know how else to say this, but lupus isn’t looking so bad at the moment. I know that it is impossible to compare suffering, and that’s not what I’m trying to do, but I think the fight is bigger than you and I. I think it transcends illness type. It is about a system that is broken and is in desperate need of fixing.

More than anything, it’s scary to be a chronically ill person, and to see young people die, people too young and too wonderful, taken before their time.

My heart goes out to the family and close friends of this person. This is a great loss to our department, and I have a feeling it is going to take quite some time for the department, as a collective, to overcome this loss.

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…

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“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!’.”

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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” Is Here September 9th

I’ll be hosting the seventh (7th) edition of the patient-centered blog carnival, “Patients For A Moment”.

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 p.m. Sunday, September 6th.

Looking forward to reading your posts!