Monday, June 13, 2011

The Right To Live And The Right To Die

A few months ago I watched, “You Don’t Know Jack,” the movie where Al Pacino plays Jack Kevorkian, or the man known as “Doctor Death.”

And it got me to thinking.  In the movie, Kevorkian blames doctors for selfishly keeping people alive who have no quality of life.  That’s very subjective.  I’m sure that on my worst days, somebody would think my quality of life is pretty bad.  But at least for me, right now, my quality of life is relatively good, all things considered.  I’m not planning on jumping ship any time soon. 

But what about some of the patients Kevorkian assisted in suicide?  Some had Lou
Gehrig’s Disease, Multiple Sclerosis, and debilitating and incurable cancers, among others.   

People asked to die.  Some had attempted to take their own lives, but had been unsuccessful.  They sought Kevorkian out, not the other way around.    

What if, when everyone turns 18, they are handed a pill, a suicide pill, like what they give to astronauts and some politicians, in case they get stuck in space or are captured by the enemy (at least in the movies).  We would all have one, riding around in our back pockets, a symbol of knowing that we have a choice.  That there is an out if we want one. 

Hospitals offer up advanced directives, DNRs, and power of attorney. 

And that’s okay. 

I’ve certainly been asked if I wanted additional information about them during my two hospital stays.  And it irked me.  On one hand, I thought maybe things were worse than I was being told.  On the other, I felt like giving in to such things at such a young age would simply make it a reality that I would die young (or maybe it’s my past obsessions with people who have died young, like Evita and Selena, that make me feel that way).

In theory, we are supposed to make choices for ourselves.  And we would like to think that if and when the time comes, those choices will be carried out.

While on the surface it may seem that Kevorkian is an enemy of modern medicine, the movie paints him as a sympathetic character.  Someone who truly believes in what he is doing, and this is only furthered in the portrayal of ill patients who genuinely wanted to escape their constant and unending pain.  These people wanted to make the decision while they were capable of doing it on their own, and so they did. 

Obviously, that’s not an option in all cases, as in, for instance, when someone ends up in a persistent vegetative state.  At that point, that’s where things get really dicey, and this has been played out in the media at various times. 

So I wonder.  If we were given an out, the ability to say exactly when and where the end will come, would we use it at a desperate moment, possibly in a situation that would ultimately resolve itself?

You know, I don’t think so.  The human spirit is pretty resilient.

But then again, I’m unsure.  In a post I wrote several weeks ago, I talked about prednisone as an out for the pain I was in.  But if I had a cyanide pill, at that moment, when I felt like the world was crumbling down around me, would I just have assumed end things right then and there? 

It’s a scary thought.  But shouldn’t we be the ones who define the end of our world, as we know it?  If astronauts and politicians have an escape clause, why don’t the rest of us? 

I’m not saying that I’m an advocate for suicide.  But I’ve been in pain, pain so bad that I would have given anything for it to end. 

And I think this argument transcends political and religious beliefs.  It gets at something deeper. 

In the movie “Wit,” which I also saw recently – and wouldn’t recommend for anyone who is ill – Emma Thompson has stage 4 ovarian cancer.  She is DNR.  At one point, the resident said that they never expected her to live through all eight experimental chemotherapy treatments.  When she codes, the resident ignores the DNR order, in an effort ultimately to prove that it was the cancer, and not the ridiculous chemotherapy treatments they were giving her, that kill her.  

The point here is that DNR is subjective, and not necessarily always heeded.  So if you can’t rely on that to get your wishes across, what or who can you rely on?   To me the answer to this question is obvious.  You can only really rely on yourself.  Which brings us back to the argument about a suicide pill.   The point of it, aside from what it does, is the power and control it gives to the person who has it in their possession. 

You say when.  You say where.     

I’ve been working on this post for awhile, so it’s a little weird that Jack Kevorkian died in the middle of my writing it.  Some say that he was down to about 70 pounds when he died.  There are rumors of kidney disease, Hepatitis C, and liver cancer.  He was an allusive character.  But in some ways, I think he was ahead of his time.  After all, he did get his MD degree from the University of Michigan, the very school I go to, that espouses itself as the home of “The leaders and the best”.  

Obviously, I wasn’t present (or necessarily even born) to be able to comment on his methods, the times that his rudimentary inventions didn’t work as planned, or much of the controversy surrounding his life. 

In doing some digging, I found that Kurt Vonnegut wrote a book in which he has a series of “controlled” near-death experiences, where Kevorkian helps him meet people in the afterlife, but then he returns to earth.  The story takes place in the lethal injection room of a prison in Texas.  Oddly enough, the book is called “G-d Bless You, Dr. Kevorkian” (1999).  Were the two really friends?  I guess we’ll never know.  But in Vonnegut’s imagination, he has all of these interesting experiences until Kevorkian is arrested for murder.  Apparently Vonnegut was a fan of Kevorkian’s.  Why else would he have written such a laudatory book about him? 

And there’s tons of irony here.  Vonnegut turns the man known as Dr. Death into a hero, saving his life over and over again.   But maybe this odd display by Vonnegut tells us something more important about the legacy of Kevorkian.  Maybe he was a hero, by allowing people who no longer wanted to live the chance to escape.  There weren’t any do-overs for them, though, and there certainly aren’t any for him.  Maybe by granting people death on their own terms, he actually saved them from lives that would have been full of pain and misery.  I don’t know.  I can’t ask Kevorkian and I can’t ask the people he helped to die.  And I think that’s what makes this such a touchy subject.  There is so much that is unknown, and that we will never know, about him and about them.  

Is it ironic that Kevorkian had a “natural” death in a hospital.  Maybe, maybe not.  I think the real question is: was that his choice?  Was that what he wanted in the end?  Because if it was, then he stayed true to his mission.  If not, well, he should have gotten a better attorney to see that his rights were carried out. 

In many ways, it’s surprising to me that he went quietly.  I always assumed that his end would come with some of the bravado that surrounded his life. 

But if there’s one thing that Kevorkian brought out with great relief, it’s that modern medicine doesn’t have all the answers.  Doctors play g-d all the time.  I think it’s time that we played g-d a little bit, too, at least in our own lives (and deaths). 

Currently in Britain, author Terry Pratchett, who has Alzheimer’s disease, is currently fighting for his right to die, suggesting a take-home “suicide kit”, allowing terminally ill people to end their own lives.  He also hopes that his death will be broadcast on British television.

This example suggests that the death of Kevorkian does not mark the end of the discussion about the merits and drawbacks of physician-assisted suicide.  To the contrary, it seems to me that the conversation is only just beginning. 

Wednesday, June 8, 2011

Patients For A Moment: Down But Not Out Edition


For this edition of Patients For A Moment, I asked the following question:

What gets you down, and what do you do to pick yourself back up?

I sincerely appreciate the honest and open responses that the participants in this edition provided:

Brittney, from The Road I’m On, talks about a variety of issues in her life that have contributed to depression, seeking out therapists, and trying to find other means of dealing with hard times, in the post, “Is That A Dark Hole I See?”.  She suggests that writing is one of the most therapeutic activities for her, and I couldn’t agree more.

In the post, ‘don’t let it bring you down’“: PFAM blog carnival”, Phylor of Phylor’s Blog explores some of the adventures of her “past life”.  She calls chronic pain and depression “evil twins”, and she tries to send them on their way with thoughts of butterflies and sunshine.  

Kitty from My CFS writes about being fed up with making changes that don’t seem to work, only to go in the other direction when she eats the things she’s not supposed to.  She calls herself “bad kitty!”, but I think she’s being too hard on herself.  Sometimes it feels too bad to be good.

In the post “On moping”, Helen of Pens and Needles Pens and Needles talks about coming to terms with not being able to do things because of illness, but that’s not really what gets her down.  What gets her down is being in pain from doing nothing at all. 

In my post “The Dark Side Of The Moon, The Underbelly Of My Soul”, I (Leslie from Getting Closer to Myself) talk about hitting a rough patch recently, and feeling pretty down about things. 

No one, including myself, was really able to answer the second part of my question.  I really put it in there because I felt like I’d get people down if I didn’t, but I guess sometimes just making it through is the best we can hope for.  Sometimes all we can do is hope that things will get better.

And sometimes when you are down, all you can really do is give the world a big f*** you, Cee Lo Green style

The next edition of PFAM will be hosted by Una Vita Bella and will go live June 22nd.

Monday, June 6, 2011

Guest Blogger: My Sister Molly


I haven’t talked much about my family on my blog, not because they aren’t a huge part of my life, because they are. I haven’t talked much about them because this is my story. I’ve been public about it, but didn’t want to put them in a more public eye than they would be comfortable with.

However, my aunt and I recently did the arthritis walk, and my aunt, sister, and I did the lupus walk. Given this, I figured I would give my sister the opportunity to share a bit with you, from her perspective.

My sister is 16 years old. She will begin her senior year of high school in the fall and is preparing to apply for college.

How would you describe our relationship?

M: Since Leslie and I are nine years apart, our relationship has grown over the years. I think that we have become better friends and sisters for one another. We know that we are there for each other, and we enjoy so much more every moment we get to spend with each other (I think and hope Leslie feels the same way). Even though I mess with Leslie (probably a little too often), I know that when and if she needs me, she will let me know.

I agree. Molly and I are nearly ten years apart. I think it was difficult when she was younger and I was a teenager. I think Molly and I have become better friends over the last several years, when she entered high school and I moved out to live on my own.

(And yes, I'm older, but she is taller...)

What do you know/understand about my illnesses?

M: Honestly, I know a lot more than one might think, because of some of the classes I am taking at school. I know that Lupus and RA are both autoimmune diseases, where healthy tissue is attacked by your body’s immune system. One’s body cannot respond effectively, and most if not all of the effects from RA and Lupus are chronic. I also know that Lupus and RA have a huge impact/ side effects on the patients and those that are involved with them.

Can you tell from this answer that my sister wants to go to medical school in the future? I’m impressed!

At what point did you gain this understanding? I was diagnosed a little over three years ago in 2008.

M: Throughout Leslie’s journey, I was periodically filled in on what Lupus and RA were. From the beginning I was aware that they were both recurring illnesses, and I knew that Leslie (in whatever capacity the diseases would affect her) would have to deal with this for the rest of her life. Like I said before, some of the information I learned in my AP Biology class.

Oh, AP Bio. She’s one smart cookie, that sister of mine!

How have my illnesses impacted your life and/or our family?

M: Leslie’s illnesses have definitely impacted my family’s life more greatly than my individual life. Sometimes hospital visits may have gotten in the way of homework or hanging out with friends, but now and even at the time, it did not really matter. It was my responsibility to be there, in the best or worst of times, to support Leslie as much as I could. As far as family is concerned, everyone has been affected be Leslie’s illness, but I would not say in a bad way. We have rallied together, a support network of Rott’s ready to fight for Leslie, but not just Leslie. In general, we have become much closer as a family (we were always very close) and I absolutely love that about us. Even though it can feel like I am being watched by big brother (mostly my mom) it is good to know that I have people always watching my back. Hopefully, that is how Leslie feels, too.

What is it like to have a sister who is chronically ill?

M: This is a really tough question because some of my closest friends do not understand the effects Leslie’s illnesses have on me. I have mixed emotions, some that it is just really strange and some that feel so sad because Leslie is chronically ill. The strange part is the part that is still naïve, which still does not understand exactly what Lupus and RA are, and when people ask how awkward it is to say, “Oh, well I don’t actually know, but I will ask to find out exactly what it is”. The other side, the sad side, is the fact that all I can do is sit back and watch and hear what happens. I can’t stop Leslie’s itching attacks or pain, so I have to be there, to support her and most importantly, to make her laugh.

Has our relationship changed as a result of my illnesses? If so, in what ways?

M: Like I said before, I think that we have become a lot closer since your illness, and since we both are old enough to know that we are sisters, we don’t have a choice, and we always will be (and I can’t imagine being anybody else’s sister). In general, we have learned to share better  and be more appreciative of each other. I have definitely learned so many things from you that I always believed you would teach me, and I cannot thank you enough for that.

What has influenced you to take part in the lupus walk and become an instrumental part of “Team Leslie”?

M: I just want Leslie to know that I support her, and if I can walk to show her that I am vested in finding a cure for her and those effected by Lupus, then I will. I could not be more proud to be part of such a cool team, and doing it with Leslie and my aunt is just icing on the cake.

What would you say are our happiest/proudest/most favorite moments together?

M: Most family moments are pretty funny. Scattergories is all I have to say for one of my favorite family moments!!! Now for Leslie and I, my all time happiest moments with Leslie are the times where we just chill together. The times, where we can be in the same room, watching a movie or just laughing, that is the best. Quiet or loud, annoying or off tune, does not matter, special sister moments that I will never forget!!!! Leslie, I love you so much, and want you to know that a girl could not ask for more in a big sister or friend.

Thank you, Molly, for being my sister, and for being the laughter through the tears. You’re the best little sister a girl could ask for. I love you!

Tuesday, May 31, 2011

“Patients For A Moment” Is Here June 8th

I’ll be hosting “Patients For A Moment” on June 8th.

I’ve been feeling pretty down lately, as is evidenced by my last post, so my question for this edition is related to that:

What gets you down, and what do you do to pick yourself back up?

(You don’t necessarily have to specifically address the second part of the question if you aren’t sure what the answer is).

Sorry to be doom and gloom, but sometimes you’ve just got to let it flow in order to move forward.

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, June 5th.

A big thank you to those who heard my plea and volunteered to host PFAM during the summer months. Please note that there are still several spots still available for 2011 that are up for grabs. Please contact me if you are interested in hosting.

Sunday, May 29, 2011

The Dark Side Of The Moon, The Underbelly Of My Soul

“Made a wrong turn once or twice
Dug my way out, blood and fire
Bad decisions, that's alright
Welcome to my silly life

Mistreated, misplaced, misunderstood
Miss ‘No way, it’s all good’
It didn’t slow me down.
Mistaken, always second guessing
Underestimated, look I’m still around […]”

- “Fuckin’ Perfect,” Pink

I haven’t unleashed this much blackness in a while. It doesn’t feel good, but I have to let it out. I am screaming inside.

And it’s weird. Because there are good things happening. But I don’t see them. I only what isn’t there, what’s lacking, what’s missing.

I’ve made it a practice of putting it all out here on my blog. I have been honest, possibly to a fault. So here I go again…

Let me just say that the rain is destroying my life. The other morning, I got up, made coffee, and was checking e-mails, only to keep lifting an empty coffee cup to my lips. I had drank it all, but felt like I had none. I ended up hopping back into bed for about another hour, and felt better. But as the day cycled through rain on and off, so did my brain.

I’ve been feeling a bit down, as I think about this time last year, and how I was meeting my now ex-boyfriend’s parents. It’s amazing how things can change. And it’s sad. Really sad. Because now, I worry about running into my ex-boyfriend. I literally have panic attacks when I walk the same route to get to the hospital that he and I used to walk together. I hate being afraid of people. But I think the fear stems from the fact that the last experiences we had together were with a person I didn’t know, didn’t even recognize. And what if I see him and he ignores me?

It’s the unknowns that I hate. What if, what if, what if. I just wish things could have been different. What if my whole life is one big fucking mistake? How’s that for a what if?

It’s like, I wonder. Do people see me as strong? Because I’ve cried in the middle of the grocery store, I’ve cried at Starbucks, I’ve cried pretty much anywhere you can cry where you won’t get committed.

This might sound horrible, but I am so sick of fighting for myself. There are honestly days where I feel like I could stay in bed and no one would know the difference.

It’s so damn hard to be strong all the time.

Old patterns re-emerge. I am feeling awful, to the point of barely functioning. I scrape myself off the wall. I’m sleeping my life away. Is this just Plaquenil withdrawal while waiting for the Quinacrine to kick in? Is the Quinacrine working at all? How can I trust the process, when right now, I can’t trust myself?

Then there is the pain, from the top of my head to the soles of my feet. And it hurts to breathe. It feels like there giant air bubbles between my ribs. Maybe I started feeling a bit better because I acknowledged that I could take prednisone. I didn’t take any. But the thought of any kind of out was appealing.

Depression is a bitch. And chronic illness is a bigger bitch. Wow, great, my life is full of bitches and assholes. How wonderful. Go me!

I’m a walking liability, literally and figuratively.

Sometimes the hardest thing to do is to forgive ourselves for crimes we’ve committed against ourselves. I need to forgive myself for being blind-sided by illness. I need to forgive myself for being blind-sided by a boyfriend who was as clueless about himself as he was about relationships.

And it seems as if every errand on my to-do list turns into a multi-step process.

Last week I went to get my student ID card renewed. As a volunteer at the hospital, they only make it good for a year. So I went to the ID place and they told me that I had to get a form from volunteer services. So I go to volunteer services and am told that this necessitates me filling out all of the paper work all over again (on a yearly basis). This also necessitates being asked if my emergency contact info, with my ex-boyfriend’s info is still current. Buzz the fuck off. So I am doing all this stuff and the person tells me that in the future I should make an appointment. Okay bitch. Don’t bust my hump for something I didn’t know I had to do. All I wanted to do was get a new ID before mine expired. And don’t worry. Based on how you treat your volunteers, there probably won’t be a next year.

Why is this woman treating me like I’m a fucking child? I haven’t been a child for a long time. I’m not really sure I was a child even when I was a child. And chronic illness took any shred of innocence I had left. Pain is real. Too real. And pain and loneliness are a really bad combination.

I was due for a tetanus shot in September. I’ve been putting it off. After the whole cellulitis thing, I tend to be wary of vaccines, especially ones given by the student health center. So I went. I got the shot. And I needed to get a copy of my vaccine record for volunteering. The nurse hands my chart off to the receptionist, and tells her I need a copy of my vaccine record. The receptionist acts all put out about this. And then she starts complaining that my medical record is too long and that I should get a new one. And she’s bitching and bitching and bitching. And I’m breaking into a cold sweat, and the room is tilting, and I feel like I am going to pass out. I’m not sure if I was actually having a reaction to the shot, or if my previous history of vaccine flub-ups is causing anxiety. I’m ready to run for the door and tell the receptionist she’s off the hook, but I do my best not to pass out, because I resent her feeling inconvenienced because I’m sick.

When did everyone get so fucking annoying? And when did I resort to non-violent protest? To just stand there and nod and smile? I guess because I am better at writing the shit out of it than talking about it.

I have snot all over my face because I’m crying. And my arm hurts from the fucking tetanus shot. And I just want to curl up into the fetal position, and return to a time when there was nothing to understand. But I’m already there. I really don’t understand what’s happening to me, or why things are happening the way they are.

For the first real love to tell you that they don’t love you anymore. That hurts. That hurts a lot. It hurts more than anything any person should ever be allowed to do to another person.

I get the feeling that we are never going to be friends. And it frustrates me because I’m the one trying to offer an olive branch, when I should be the one saying fuck you. Fuck you. You dumped me. And I should hate your fucking guts. But I don’t. I get heart palpitations and it’s hard for me to breathe at the thought of seeing him. At the thought of what a face-to-face encounter would be like.

And then there’s survivor guilt. There are times when I think about my cousin and I wonder why it was him and not me. Why did I get more time and he didn’t? Time for what? To see how much I can take before I break? Because I think I’ve hit my limit. The everyday, minute interactions have become too much. I don’t want to talk about my emergency contact information, or the fact that I don’t have a boyfriend, or the fact that my medical record is three inches thick. I don’t want these to be the things the define me. But they are. They are. And I hate it! I’m so over being nice to people who don’t deserve my pleasantries. Especially since there are obviously so little pleasantries at the moment.

I am not a martyr.

Life is fucking hard. If life is easy, you’ve done something wrong.

I’m overwhelmed. Between the weather and the new med. And everything else. Maybe I should have left well enough alone, but it didn't feel like well enough to me.

We put ourselves out there, hoping that the risk will be worth the reward. But sometimes it isn’t. Sometimes the risk is just plain risky. It puts you in the position of being made to feel lower than you’ve ever felt before. Lower than you thought it was even possible to go.

I’ve hit a rough patch. Things will get better. They have to. They have to.

Through my tears, I am trying to smile…

Sunday, May 22, 2011

Traveling (Alone) With Lupus And Rheumatoid Arthritis

For the next edition of Patients For A Moment, Maria at My Life Works Today! wants to know what your goals are for the summer, which you won’t let illness get in the way of. This topic is very timely for me, as I prepare for what promises to be a crazy summer.

As I talked about in my last post, I have a lot of traveling to do this summer. Most of it is for my dissertation research. I never intended to have a dissertation topic that would require me to travel, but that’s just how it ended up. So if I want to have a dissertation, I have to travel to the source.

With the exception of one trip that hasn’t been scheduled, and could wait until fall, everything else that is happening this summer has to be done this summer. Or I will derail my timeline for finishing graduate school.

In graduate school, summer is a time to relax and recoup. Just kidding. Is it really? No, not at all. The summer after my first year of graduate school, I had a research intensive internship. The second summer I taught and studied for my first preliminary (comprehensive) examination. The third summer I taught and completed my second prelim. And this summer, I am teaching, will be traveling extensively in July and August, working on all things dissertation, and getting used to a new medication (Quinacrine).*

I’ve got nothing going on, right?

Anyway, as you probably already know, if you’ve been following me for awhile, I don’t travel well. No matter how hard I try, I tend to always come back worse for the wear.

For me, traveling is both physically and mentally exhausting. Not only do I have to contend with lugging suitcases, I also have to contend with the endless walks through the airport, the travel between where I arrive and where I’m staying, and all of the other things that go along with it; and my lupus brain also has to be functioning well the entire time.

At my last rheumatologist appointment, which I discussed in my last post, my rheum asked me if I am traveling alone. I know that this is his not-so-subtle attempt to inquire about my romantic life. YES, I’M TRAVELING ALONE. WHAT’S IT TO YOU, DOC?

But I digress. The reality is, though, that I’m not really traveling alone. And when it comes to chronic illness, it’s impossible to travel alone.

Not only am I traveling with my illnesses, and all of the literal and figurative baggage that comes with them, I’m also traveling with a cache of goods to help me be as successful as possible in not killing myself.

I’m planning to do a “What’s In My Bag?” post (or possibly vlog) once I get myself ready to do all of the traveling that I am doing this summer. But suffice it to say, I have been stocking up on everything I could possibly need that is carry-on size approved.

So, in answer to Maria’s question for the next edition of PFAM…

Um…my goal for the summer…Try not to die?

* A note about Quinacrine: While it is in the same class of drug as Plaquenil (Hydroxychrloroquine), Quinacrine is not commercially available in the United States. It is only available at compounding pharmacies, and because it is made up of only one active agent, my insurance will not cover it.

Wednesday, May 11, 2011

Down Like A House of Cards?

“Do you ever feel like a plastic bag,
drifting through the wind
wanting to start again?
Do you ever feel, feel so paper thin
like a house of cards,
one blow from caving in? […]

You just gotta ignite, the light, and let it shine
Just own the night like the 4th of July

’Cause baby you’re a firework
Come on, show ‘em what you're worth
Make ‘em go “Oh, oh, oh”
As you shoot across the sky-y-y [...]

- “Firework,” Katy Perry

Things are going okay.

But I am worried, very worried about the months ahead. The reason being is the following list:

I had my last physical therapy session last week, and also saw my GI doc (see post here).

I started teaching a course for spring term last week. It meets Tuesday, Wednesday, Thursday, and goes from May 3 to June 16. I also defended my prospectus on Monday. For those who aren’t familiar with graduate school protocol, defending the prospectus – which is basically an outline of the dissertation – is kind of a big deal.

And I had an appointment with my rheum today.

Given everything that’s done, I still have the following to do:

- May 14 - Arthritis walk
- June 5 - Lupus walk
- Somewhere in between - Conducting interviews for dissertation
- July 2-6 - California
- July 12-13 - Blogger event (location TBD)
- July 14-17 - Illinois
- Somewhere in between - New York
- August 20-23 - Las Vegas (American Sociological Association conference)

I’m putting this list here as much for you as for me.

Can I do it? If you look closely, the beginning of May will be very busy. June won’t be too bad if I use the time when I don’t have anything to do to rest. July is going to be hard being in California one week and Chicago the next. I don’t exactly know where the New York trip will fit in, or if it may even be postponed until the fall.

The thing is, I slacked off a bit this past term. I was on fellowship this year, so didn’t have classes or teaching, and I was able to just cruise. I expected things to fall into place with my prospectus a few months earlier than it did, but I was dealing with family stuff, and then a break-up, so I had a lot going on emotionally.

Ultimately, if my dissertation research gets done this summer, the end result will be what I wanted. I guess it doesn’t matter as much how I got there.

I wondered what my rheum was going to say today when I told him about my summer schedule. But there’s not much I can do about it. I could drop the conference in August, but that’s not even the biggest concern at the moment. The concern is that I don’t travel well. My body takes a beating. It looks like Prednisone is going to be the go to.

I admit, I get an adrenaline rush. This must be what you used to carry me through, from a summer internship at a newspaper working 100 plus hours per week to writing a 125 page honors thesis. But it doesn’t work anymore.

I get it for a time, and then I crash.

I really see now how I used to function before. It’s like episodes of freakish productivity. And when I wasn’t sick, that was sustainable for much longer periods of time.

It frustrates me. I want to punch something. I can’t be the person I used to be, but in some ways, I don’t know how to be the person I am now. How do I get done what I need to without killing myself?

Why is that so often our worth is measured not by quality, but by quantity? I would rather do a few things really well, and keep my health, then to do a bunch of things that are only okay.

I truly wonder how much more I can handle. Like what event will be the final straw, will put me over the edge, and will deliver the striking blow? Because I don’t think it’s a matter of if, but of when. When will I not be able to handle it anymore? When will the next heartbreak be too much?

When I feel this way, I’m reminded of how few people get it. How few people care to know. Illness is much less the enemy than my head and my heart. And my heart is far more the enemy than my head. I feel too much, and illness taught me to do that. Illness has taught me that I’d rather be in pain than be numb. But being numb certainly has its allure.

Last time I saw my rheum, he asked if I had the same boyfriend. I was happy to report yes, and honestly thought that at this most recent appointment, six months later, I would be happily sporting an engagement ring. But since I have no ring and no boyfriend, I really didn’t want to have that conversation with my rheum. Why does this make me feel like such a failure, especially when I wasn’t the one who gave up on the relationship?

And I wonder. Will he notice the pattern? Patient seems happier and healthier when in a relationship.

It’s not that I can’t do life on my own. I can, I do. But I don’t really want to.

I know my rheum to be pretty laid back. He isn’t an alarmist. So today was weird. We had a few good laughs, but he has some serious concerns, about what seems to be a chronically elevated diastolic blood pressure (like we’re talking in the 90s) and heart rate. He’s worried, given the propensity for those with lupus and rheumatoid arthritis to have cardiovascular problems. 10 tubes of blood, and three urine samples later, my rheum is going to wait for the results, talk to my PCP, and get back with me before I fly the coop to do everything that I have to do this summer.

But I can’t keep doing this. I can’t keep saying my health is a top priority and then treat it like an afterthought. Something’s gotta give. Or I’m going down like a house of cards.

Monday, May 2, 2011

Physical Therapy Redux: “It’s All In Your Butt”

The theme for the next edition of PFAM is memorable advice. I think my experience of physical therapy over the last few months fits well with this.

Besides the colonoscopy and defogram, this has been the worst experience I have ever had in the medical system.

Not only was the physical therapy itself uncomfortable and antiquated, but I felt like my physical therapist and I were living on two different planets

“At least now you know, it’s not all in your head, it’s in your butt.

Yes, that lovely phrase was spoken by my physical therapist. I’m not sure whether to laugh, cry, or smack her. Or all three.

Overall, the experience was a little too touchy-feely for me, literally and figuratively. I have never been one of those people who can really zen out or find mindful breathing to be helpful. It’s just too much granola hippie-ness for me. Or maybe I’m just far too high maintenance. Either way...

My physical therapist and I engaged in a variety of conversations. Thank goodness for the distraction, because it’s not like I could just pretend that her finger wasn’t up my ass.

After telling my PT that I was Jewish, she started spouting off Christian verses. Holy uncomfortableness. I think it is probably the most unprofessional thing I have experienced at the hands of a medical professional.

And it’s hard to commune with a part of your body that you can’t see, and is only used to evacuate excrement. I’m pretty sure even if I could see it, I wouldn’t like it very much.

I know, maybe I’m being too much of a hard ass.

But I’m supposed to be getting in touch with my bottom-side. I’ve tried to be as open-minded as possible during this process, if for no other reason than to hope that it helps, and that all of the uncomfortable-ness was worth something. And in some ways, it has helped; and in other ways it hasn’t. (But I won’t go into that in depth, because I fear, my dear readers, that I may have actually found something that is just TMI for you…and for me…)

Truthfully, I counted down the days until therapy was over. And today, it finally was!

I also coincidentally had an appointment with my GI doc today. This is the woman who I have seen randomly at the hospital and there’s no recognition on her part. Well, today she came in and asked how my Crohn’s is. I said I don’t have Crohn’s. Colitis, she asks? And I’m like no. And she says she should probably look at my chart. And then she’s like, oh yeah, you have lupus and rheumatoid arthritis. All those autoimmune diseases just run together.

So the outcome of that appointment was that I need to have another colonoscopy. But should I really trust this doctor to do it? I just hope she knows which end is up…

Are you the butt of every joke? No, but my butt is!

I’m laughing so hard I can’t go on…