"All In My Head"

So, I got to see Shawn Mullins in concert tonight, which was super cool. He sang the song, "All In My Head," which I had never heard before and I thought it was rather appropriate for the recent happenings in my life.

I promise to get some "real" posts up as soon as I have a little more time.

By the way, where did July go??? Thanks to all of my fabulous readers for hanging in there, even though I have been notably absent...

*****

“I’m just trying to get by
I’m just buzzin’ on a sugar high

Yeah...Everybody moves so fast, no time to wonder why
Yeah...I’m just tryin’ to get by

Is it all in my head?
Is it all in my head?
Could everything be so right without me knowin’?

I’m just workin’ for the Man
I’m Just tryin’ to lend a hand

Yeah...And If I had a rocket ship, I’d never wanna land
Yeah...I’m just doin’ the best I can

Is it all in my head?
Is it all in my head?
Could everything be so right without me knowin’?

Is it all just some game, where everything stays the same?
Is it all in my, all in my, all in my head?

Everybody needs a little love, to make it all work out
But I’m still lookin’ to the stars above...Hey! Hey! Hey!

It’s all in my head
It’s all in my head
It’s all in my, all in my, all in my, all in my head

Is it all in my head?
Is it all in my head?
Could everything be so right without me knowin’?

Is it all just some game, where everything stays the same?
Is it all in my, all in my, all in my, all in my head?”

From the album, “Honeydew”

"FDA Experts Recommend Approval for Experimental Arthritis Drug"

From HealthDay Health Highlights:

“The experimental rheumatoid arthritis drug Actemra should be approved by the U.S. Food and Drug Administration, an expert panel advising the agency recommended Tuesday.

The advisors voted 10-1 in favor of approval, despite the drug’s serious side effects including possible infections, liver damage and cancer, the Associated Press reported. Last week, the FDA posted documents on its Web site that said Actemra appeared effective in treating moderate-to-severe RA, including symptoms such as disabling joint damage and pain.

RA differs from typical age-related arthritis, which involves wear and tear on the joints as people get older. In RA, by contrast, the body’s immune system actually attacks the joints. About 2.5 million Americans have the condition, and most people get it in early adulthood or middle age, the AP said.

While most arthritis medications are designed to relieve pain, Actemra is a genetically engineered drug that blocks a protein called IL-6, which has been linked to the body’s inflammatory response.

Actemra is made by Hoffman-La Roche Inc.

The full FDA generally follows the suggestions of its advisory panels, though it isn’t bound to do so.”

(http://healthday.com/Article.asp?AID=617911)

*****

Read also the recent blurbs on HealthDay about Actemra from July 25, July 26, and July 27.

My Wordle

I have decided to join the Wordle bandwagon and create my own. So, click on the picture to view it full size, and enjoy this piece of Monday randomness!

Forced Disclosure And The Battle Within

I know I’ve been delinquent about posting this week. It has been a busy week and one that today made me regret. It was a week full of too many long days and late nights and I slept most of today as a result.

Part of the difficulty of this week was the emotional battles that raged inside me.

As I’ve mentioned before, I’m going to be a graduate student instructor (GSI) starting in the fall. This means 20 hours of work per week plus my own classes. But most of all, it means having to constantly deal with other people who probably won’t understand my health situation. The other GSIs and I received an e-mail last week that we needed to decide amongst ourselves the sections we are going to teach.

Simple right? Not even close. It was one of the most stressful situations I’ve experienced in awhile.

I was the second person to e-mail my choices; either two early Thursday or Friday sections. I opted not to teach the Wednesday sections because I only ever have doctors appointments on Wednesdays and there is no way I would be able to conceivably fit that all in, in one day, considering that doctors appointments on the “good” days take at least two hours (by the time I leave home and get back). And I knew that I wouldn’t be able to physically handle teaching two evening sections in a row, either.

I wasn’t trying to use my illnesses as an excuse to get out of things. I was being honest with myself. Why would I commit to doing something that I know I physically can’t handle doing?

Well, these explanations apparently weren’t good enough for my fellow teachers. There were some heated e-mail exchanges that followed. I said that I was willing to teach two late sections, as long as they weren’t back to back, but apparently this wasn’t enough compromise coming from the only person who was willing to make concessions. The one concession I wasn’t willing to make, however, was my health.

In the end it did get worked out, but it was incredibly frustrating. When I sent my choices, I indicated that my reasoning for picking the times I did were for doctors’ appointments and health reasons. I didn’t feel that any of the people I was communicating with needed or deserved any more information than that. And I stand by that decision.

However, it made me realize that now I probably have to explain what has been going on to the professor I’ll be teaching for. I had been contemplating this and hadn’t come to a firm decision on whether or not to have this discussion. But this whole scheduling fiasco made me realize that my having lupus and rheumatoid arthritis is probably something I should disclose.

I don’t necessarily think it’s fair, though. I feel that I wouldn’t necessarily have to disclose to this person if it weren’t for the fact that I’m surrounded by a bunch of graduate students who can see no further than themselves.

I know that sounds harsh, but other experiences this week made me realize that people, in general, are unfeeling and uncaring. People can just be plain mean. I think I’ve always known this, but lately, meanness seems to be out in full force.

On Tuesday, I’m giving my first professional presentation as a graduate student. As I’ve said before, very few people in my department or in my internship program knows what has been going on. And this presentation has the potential to “out” me. The presentation is on chronic illness, stress, and self-esteem and self-efficacy. In the presentation, I explain why studying chronic illness is important, but there is the potential that someone in the audience may ask why it is important to me.

It’s one thing for people to stumble across my blog and find out what’s going on. That is a risk that I am obviously willing to take. But this whole issue of forced disclosure just doesn’t sit well with me. I don’t like being put in the position where, it’s not my intention to disclose, but I am forced to.

A situation like this happened earlier this year, long before I had started blogging or even knew what was wrong with me. I had signed up to do some publicity for a departmental event. After I had finished everything I was supposed to do, I was told that details of the event had changed and everything I had done needed to be redone. I had told the person in charge (a fellow grad student) that I couldn’t do it. I was then told that I would have to e-mail all of the grad students in my year to find someone else to do it. So I had to send an e-mail out explaining that “for health reasons,” I needed someone to take over for me. It’s not like I had gone back on my word and not done something I said I would do. I had done my part.

The thing is, I don’t think that if I came right out and said “I have lupus and rheumatoid arthritis” that it would really make any difference to the situation. In fact, I think it would make things more awkward. Most people aren’t going to understand the significance of those illnesses, especially if they don’t understand the significance of health issues, reasons, etc.

In the teaching situation, no one had any problem offering up their issues and excuses, but no one stopped to consider the significance of mine. This is something that I face continually. I am supposed to care about everyone else’s “stuff” when no one bothers to care about mine.

While everyone else is busy looking out for themselves, it’s time I started doing the same thing for myself…

In Memoriam: Randy Pausch, 1960-2008

Some said news...

As many of you know, I have been following the Randy Pausch story, and have posted about him several times.

Randy died today at his home in Virginia, at the age of 47 (from pancreatic cancer). More information can be found here.

There had not been any updates on his update site for more than a month.

Even though I only knew him from TV and reading his book, I really admired Randy, and hope that I am half as brave as he was in the face of great adversity.

I am not really sure what else to say about this right now. I just figured some of you may want to know.

Why Do We Insist On Pushing Ourselves?

Why do we do this? Pushing our bodies harder, faster, farther, only to be hit with the realization that our bodies push back. And they usually push harder, faster, and farther than we had intended to push in the first place.

At least for me, this is a competition within myself. It’s not a competition to be the next supermodel or Olympic athlete. It’s about being better than myself. It’s a game I know I can’t win. And yet, I keep playing a game with myself that has an impossible course.

The past week or so has been busy at work, preparing my presentation. And since I’ve actually gotten a lot accomplished at the office, I’ve been taking the nights off. And I think, why can’t I do that more often? Because I’m a Type A control freak, that’s why.

It’s funny because I used to push myself, really push myself. I would tell myself that without feeling pain, I wasn’t really trying hard enough. But one day, that pain lasted for more than a day after exercise. And then soon enough, that pain was all I knew, whether I exercised or not. It felt like I was running a marathon, even if I was walking only a few steps.

And so, this thinking leads (some of) us to believe that we have made ourselves sick. But maybe, for me, at least, this constant nag to push is what keeps me going. It is no longer to see how many miles a day I can walk, but to see how many stairs I can climb with little pain, without wincing at every step, without feeling like a miniature firing squad is poised and ready to take down my knees.

I think we push and push and push, only to realize that it’s the small strides that really count. But in the intense academic environment that I find myself in, it’s hard to admit this when I’m surrounded by people just like me. Rather, I’m surrounded by people who are just like the person I used to be.

I haven’t lost all of my “push”. I still stress too much about things I shouldn’t, but I’m trying to work through this. For me, I push so I don’t have to justify myself to others. I guess I shouldn’t have to do this, regardless, but it makes me feel that I don’t have to answer questions that people don’t ask.

Would You Rather Be A good, Sick Person, Or A Healthy, Bad Person?

“Serious illness doesn’t bother me for long because I am too inhospitable a host”

- Albert Schweitzer

Now, I’ll admit, this isn’t really a fair question. However, I’m inclined to first respond that I would rather be healthy, period. But if I had to pick, I guess I would pick good over bad, even though that also means opting for sick over healthy.

We can’t have it all, can we? And for that matter, we don’t get to decide.

I always thought that by taking care of my body, I would be able to thwart illness, at least for a few more decades. But that’s not true. The illusion of control is great, but in reality, there is very little we actually have control over.

Especially at this age, if you haven’t experienced serious or chronic illness, you may think that staying healthy is within your control. And so, I wonder how I can help those around me learn what it’s like really to be sick?

Have any of you seen what Kerry over at Six Until Me has been doing?

She’s had some of her co-workers be diabetics for a day (Part One and Part Two).
Now I wonder…

Could this be done with Lupus and Rheumatoid Arthritis?

I think the “The Spoon Theory,” which I’ve posted about before (Leslie on “Spoon Theory”), is a good exercise to this end.

However, I do think there are people who literally have to walk in your or my shoes in order to understand what you or I are going through. Often times I think the attitude is, if I haven’t been there and done that, why should I care?

Making people realize that they would have to calculate the energy of every activity and that, almost without question, they would not have enough energy to do everything they set out to do, is certainly a starting point. But what about the nausea, dizziness, generalized feeling of being unwell? And let’s not forget about the joint and muscle pain. Plus, all of these symptoms are variable and come and go as they please. And let’s not forget that what your illness doesn’t cause, your medication probably will…

How do we truly make those around us understand all of that?

Is There A 12-Step Program For Chronic Illness?

I’ve been feeling kind of down lately, hence the lack of posting. I’ve had a lot to say, bottled up inside of me, but little willingness to write it.

It seems, as of the past few weeks, that my pain has diminished considerably.

However, I haven’t made it over that “month hump,” which I seem to be getting stuck on. There will be vast improvement for literally a month, and then boom, I hit bottom again.

When I walk to work and home, by the time I’m there, I feel like my calves are going to explode. And it still feels like hammers hitting my knees when I walk down the stairs.

It also seems to me that as one system starts to normalize, another one goes defunct. Lately, I have no appetite. I could go from breakfast to dinner without eating anything. The only thing that really makes me eat at all is the fact that I get kind of woozy and would prefer not to pass out.

It’s like the head is miles behind catching up with the body. The physical pain is mostly gone, but the emotional pain of a broken body remains.

And then, of course, there is the daunting thought of when will I hit bottom again? Because I know this is a question not of if, but when. It’s like an alcoholic who doesn’t realize until they’ve hit the bottom of the last bottle of alcohol in their stash that they have a problem.

When my “normal” friends talk about similar things that I am feeling, I feel resentful. Why should they have self-esteem issues? They don’t have a body that has betrayed them. And when I talk to people who have had similar experiences with illness, I find myself instantly connecting. But there must be some way to build a bridge between both worlds. After all, I used to be “normal,” if that means illness free.

I think at the age of 22, having just embarked on several journeys that mark the beginning of the rest of my life, there is still a lot about myself that I have yet to learn. Who I am as a scholar, for instance. What I achieve in graduate school has the potential to shape the rest of my career. And who I am as a woman with several chronic illnesses. I know that how I decide to live that life is my choice. And most days, I want to do it with dignity and grace, proving that I am more than a patient number, more than some medical diagnosis. But other days I do think it would be a lot easier to send the doctors packing and go it alone. Face Rheumatoid Arthritis and Lupus cold turkey. No meds, no doctors. Just me.

So, if there were a 12-step program for chronic illness, what would it be?

I think a lot of it goes back to control, something that I have a very hard time letting go of.

What Do You Think Of The New Blog Colors?

I received an e-mail from a reader saying that the color of my blog background was too bright.
At home, my computer has a very small screen and the colors do not appear that bright to me. I am thinking, though, that people with larger screens may have found it too bright.

I’ll admit that I was kind of partial to the bright pink, but I don’t want people not reading my blog because it hurts their eyes or they are unable to focus because the colors are too bright.

Please let me know what you think, either by posting comments to this post or taking the poll in the right hand column.

"Drug Combo Improves Remission of Rheumatoid Arthritis: Those on methotrexate-etanercept therapy 3 times less likely to have to stop working"

WEDNESDAY, July 16 (HealthDay News) -- Patients with moderate-to-severe rheumatoid arthritis benefited from combining the drugs methotrexate and Enbrel (etanercept), new research found.

The combination improved both remission and radiographic non-progression rates within one year compared with the standard treatment of methotrexate alone.

Patients on this regimen were also more likely to stay employed, according to a study in the current issue of The Lancet. The study was funded by Wyeth, the maker of Enbrel.

According to the Arthritis Foundation, some 1.3 million Americans live with rheumatoid arthritis, thought to be an autoimmune disease. The disease involves inflammation of the joints which can lead to both pain and disability. There is no cure for the condition, although several drugs can provide relief.

More than 500 outpatients who had not previously tried methotrexate, a chemotherapy drug, were randomly selected to receive either methotrexate alone (with the dosage increasing regularly) or methotrexate plus 50 milligrams a week of Enbrel.

Half of the patients receiving both drugs went into remission, while 94 percent had a "good/moderate" response. Only 28 percent on methotrexate alone went into remission, according to the study.

And, those on the combination therapy were three times less likely to have to stop working, compared with those taking methotrexate alone, said the study authors, from the University of Leeds and Leeds Teaching Hospitals Trust in the United Kingdom.

Almost a quarter of patients who were working at the beginning of the trial and who were in the single-drug arm had to stop work by the end of one year, compared with only about 10 percent in the combination group.

*****

Here is yet another story touting Methotrexate. I think it is very interesting that none of the recent articles I have posted have mentioned the recent finding that Methotrexate has been implicated in causing (significantly) increased risks of Melanoma.

Believe me, I know that all of these drugs come with risks. I just find it really interesting that, that finding seems to fall below the radar.

It is also interesting that the sponsor of the study is the pharmaceutical company that makes Enbrel. I guess I shouldn’t be all that surprised.

When Is It Time To Clean House?

Honestly, I’m pretty confused at the moment. Shortly before my last major “illness episode,” I requested my medical records. Luckily, what was sent to me ended up including my last emergency appointment with Doctor C.

What’s weird is that what I’m being told by Doctor C doesn’t exactly correspond to what the medical records say. Over e-mail, I was told that my most recent blood work all came back normal. Well, according to my medical records, this isn’t so. I had a positive Anti-Ro, elevated Rheumatoid Factor and high IGG. And the levels that Doctor C reports as “remarkable” are the last three on the sheet and those are all normal.

The report was sent to the wrong PCP. I’ve told Doctor C on three separate occasions that I had changed PCPs, but obviously this means nothing.

It also says that Doctor C “has taken the liberty of scheduling” my next appointment. Actually, and Doctor C and I talked about this during my appointment, I scheduled that appointment three months ago after my last one.

So, what does this all mean? Are these seeming inconsistencies the result of inattention? Forgetfulness?

And if it’s the latter, do I really want someone as my doctor who can’t remember which patient is which?

I’d be lying if I said that I hadn’t been thinking about this, because I have been. There has always been something in my relationship with Doctor C that just didn’t work for me. Sometimes I think, I might be sick, but is Doctor C alive?

It’s no surprise that the doctor-patient relationship is a dicey one, especially for those of us who are more than once or twice a year patients. There are definitely vast inequalities in my relationship with Doctor C and it’s no secret who holds the upper hand in the relationship.

After all, what do I know?

So I’m wondering… Is now the time to find a new rheumatologist?

Although I was hesitant to move on from my first PCP, I felt instantly better that I had once I found a new doctor.

And it’s like the other day. It had been a while since I had really cleaned my apartment from top to bottom. But once I had, even if inside me, I was still feeling disordered, at least the outside was no longer in disarray.

Part of me thinks that some of the problem is due to the fact that e-mail and medical records are even more impersonal than the already alienated face-to-face interactions with my rheumatologist.

The other thing is, I’ve seen my records. I’m currently considered a “pleasant” and “interesting” patient. Do I want to get labeled as combative, uncooperative, or worse?

It seems like our relationship follows the same trajectory as my illnesses – two steps forward and one step back. I always seem to be making up for all of the back-stepping I’m doing.

My last appointment with Doctor C, as I’ve posted about before, was a vast improvement from past interactions. But then the e-mail communiqué that Doctor C fervently encourages is curt, frustrating, and often unhelpful.

I consider myself to be a generally nice person and I try to avoid conflict whenever possible. Even though I know I had a reason to drop Doctor B, I still make my appointments with Doctor F on the day I know Doctor B doesn’t work.

Back to Doctor C. I wonder if finding a new doctor will really be as “cleansing” as I want it to be. Or will I just be filled with guilt about another failed relationship?

Maybe I’m overreacting. Maybe there’s nothing to these inconsistencies and I just need to learn to let things go. But this is yet another instance where I have no idea what to do.

Plus, as of late I have very little appetite, severe dry mouth from the flexeril, and random attacks where my entire body starts to itch like crazy...

Me For President

Well, if you haven’t figured out already, I’m not actually running for President of the United States. But this is pretty funny. Plus, you too, can be a presidential candidate by visiting http://www.news3online.com/spread.php.

"Lupus Now" Creative Corner

Hey everyone, sorry I’ve been absent from posting for the past few days. I’ve been exhausted and trying to catch up on rest.

Just wanted to draw your attention to the Creative Corner on the “Lupus Now” magazine website.

My poem, “My Life As I Know It… Right Now (An Unconventional Poem)” is posted there. I may also post the poem on here when I get a chance. Let me know what you think!

So swing by and read the poem. Plus, I urge you to read the other submissions there, especially if you are considering submitting your story for my project, as there are some nice examples.

Trouble With The HPV Vaccine - Do You Really Want To Be "One Less"

I’m sure most, if not all of you, have heard something about this from somewhere. It’s been all over the news in recent weeks.

Apparently there have been over 8,000 adverse reactions to the vaccine, including Guillain-Barre Syndrome, which is an autoimmune disease.

Here is a recent article about adverse reactions to the vaccine from CNN.

You can also find information about adverse reactions to Gardasil from a report by the National Vaccine Information Center here.

Or you can Google HPV vaccine or adverse reactions to HPV vaccine, or some similar combination of terms, and find plenty of information.

To my knowledge, the first adverse reaction the news reported was that some people getting the vaccine nearly fainted and that many said the vaccine was rather painful.

Well, when I got my first HPV shot in October, I had an adverse reaction. A few minutes after I received the injection, I got dizzy and my legs went numb. I had never had a reaction like that to a shot before. Luckily for me, after about a half hour of lying on an exam table, I did feel a little better and was able to leave the facility where I received the shot.

Prior to this, since I was having other health issues, I confirmed with the two doctors I was seeing at the time that it would be okay for me to get the vaccine. I also confirmed this with all of my doctors before receiving the other two, which I had no reaction to.

And as for the pain, in my mind, it was the most painful of any vaccine I’ve ever had, including those protecting against tetanus and meningitis.

I know that some of the reactions have come from girls and women who were younger or older than the recommended age range. However, I’m sure there have been fair amounts from people who fell into the age range and thought that they were doing themselves good by getting the vaccine.

So I guess the question is, do you want to be “one less” person to get the vaccine?

Slow Going

You’ve probably noticed that I haven’t been blogging as frequently as usual. That’s because I’ve been trying to get used to my increased dose of flexeril and work has been pretty busy.

It’s funny because when I’m feeling bad, I have more energy than I do when I feel good, but am totally exhausted, which is today in a nutshell. I’m not in too much pain, but I feel like I am just starting to wake up… And I’ve actually been up for over six hours…

This has been the busiest work week yet, with lunch and dinner meetings, and trying to get my project to completion. And then there is the fatigue that has decided to rear its ugly head, yet again. I thought the point of the flexeril was to make me less tired and more rested.

The problem is that last night I wasn’t able to get a sound sleep. I kept waking up. And when that happens, it takes forever for the flexeril to wear off the next day. I fell asleep super early on the couch because I was exhausted, but you wouldn’t know it by the way I feel today.

I’ve had two meetings already and have two more before the week is over, plus a dinner thing and a baseball game (I'm not playing!!!), and I was invited to a party.

The party is causing me a lot of stress. I feel like I probably shouldn’t go for several reasons:

- I don’t drive and I would need to get a ride. The problem with this is that then I will be at the mercy of another person as to how long I stay at the party. This worries me because I’m not sure I will be able to stay that long and I don’t want to ruin someone else’s good time.
- While it’s fine if I fall asleep on my own couch at 8 o’clock, it’s not as if I can do that at someone else’s house. What if I end up being hit with a wave of fatigue at the party?
- What if I do find a ride, but end up not being able to go because I’m too tired or don’t feel well?
- If I turn down another invitation, will people stop inviting me?

It’s not as if I can really even talk to my friends about it because they can’t begin to understand. It’s not like saying what should I wear today? The question is more to the effect of how much is this activity going to cost me?

And when I’m worried about fatigue, it’s not your garden variety I’m tired. It’s a fatigue that I can’t fight. It hits and all I can do is succumb to it. It’s a fatigue that caffeine can’t cure. I feel like either I have no reserve of energy or I’m already running on my reserve. Either way, I need more sleep to regain the energy I expend each day.

Most people don’t understand how you can still feel the effects of an activity you did a week ago. But everything seems to hit me harder these days. Yesterday, I had to go to the hospital to pick up a prescription. It took forever. What was supposed to be a quick trip ended up, in total, taking almost two hours. By the time I got home, I was totally exhausted.

I think a lot of us challenge ourselves and end up regretting it. That’s what I mean when I have to think about how much the activity is going to cost me. If I go to the party, how many days afterward am I going to feel exhausted? And if I don’t go, will people think I am a socially impaired loser?

I fear that I might be becoming the latter. Lately, staying home or saying no is easier than weighing the consequences of my actions. Especially because it seems like the extra errands I throw into my day end up being a lot more difficult than I expect them to be, these bigger things are bound only to cause trouble.

So once again, I’m torn between the life I should be living as a 22 year old, and the reality of the life I’m living as a 22 year old with a chronic illness. Plus, I’m having a serious identity crisis and feel like I look terrible, so who wants to be in the company of others when they feel like that?

"Women, Work, and Autoimmune Disease: Keep Working Girlfriend"

I just finished reading “Women, Work, and Autoimmune Disease: Keep Working Girlfriend” by Rosalind Joffe and Joan Friedlander. I read the book in about five days. I would have read it a lot faster if it hadn’t been for being bogged down with work stuff (pretty coincidental given the subject of the book). It was exactly what I needed. Finally, a book about chronic illness that isn’t wholly depressing!

I have to say that I found this book to be incredibly readable.

Maybe I’m over-thinking this a bit, but I really think that both Rosalind and Joan’s experience with their own autoimmune diseases really helped them to create a user-friendly “manual”. The book is on the smaller side, which I know at least for me, made it a lot easier to hold, without a lot of discomfort. The print is not super tiny and is easy to read. Props to them for knowing their audience!

I would recommend the first chapter on autoimmune diseases to anyone. It is an extremely succinct and understandable explanation of autoimmune diseases that I think would be helpful to anyone whose life has been touched by chronic illness.

I really liked how the authors talk about what to say and how to describe your illness when you disclose to people. I thought this was very helpful. It can be confusing enough trying to explain my symptoms to myself, let alone others.

When I did the interview for Rosalind’s site, Working With Chronic Illness, we had a pretty lengthy discussion on whether I wanted to disclose my identity or not. Rosalind made sure that the decision was mine and not one that I felt pressured into making. In the end, however, I decided that I would, at least at the present time, have more to lose by hiding in the shadows than by stepping into the light.

I’m glad that I read Rosalind and Joan’s book at this point in my life. It has really made me think about what I want to do with my life and if I’m in the best position right now based on my health issues.

They definitely give women who are attempting to balance their lives with work and chronic illness a lot to think about. Even if you’re are like me, and aren’t currently working in a full-time job, they Rosalind and Joan provide a lot of practical advice for women dealing with chronic illness – “the sisterhood.”

*****

“It takes determination to look at decreasing possibilities and refuse to crumble. It takes courage to face the loss and of what you could do and see opportunity in its place” (50).

This, I think, can be incredibly difficult. Rosalind and Joan, however, provide some practical and useful advice about how best to discover what you can do, once you have developed the determination and courage to do it.

“When you live with a chronic illness, you often wonder how far you should push yourself. If you back away from the task, you worry that others will think you’re ‘wimping out.’ After, all[,] you should be able to do it. You could do it yesterday” (107).

I think we can all relate to this, even if it occurs outside the context of a job. And I think we all have attempted to push ourselves to hard, only to regret it a few hours, a day, or a few days, later.

“Some folks will remain right by your side, unfazed by the changes that your illness brings about. Others will run screaming from the room, spurred on by their own sets of reasons – not knowing what to say to you, not knowing how to deal with your new limitations […] fear that whatever you’ve got, it might be contagious” (181).

It’s odd, I think, that when you’re sick, your illness can become more about others than about you. What will so and so think of me? Will they act differently toward me? It’s hard because our reactions and the way we cope with our illnesses can be far different than the way others around us do. And this can cause the relationship to break down, if not fail, completely.

*****

I think Rosalind and Joan do a really good job of trying to convince the reader of the positive aspects of autoimmune diseases. I think this book is great for anyone diagnosed, as two women that have been dealing with their illnesses for a long time wrote the book. They speak from experience…
*****
(Joffe, Rosalind, and Joan Friedlander. Women Work and Autoimmune Disease: Keep Working Girlfriend. New York: Demos Health, 2008.)

Trying To Get Back In The Swing

I hope everyone had a fun and relaxing long weekend.

I know I certainly needed the break.

Right now, I’m trying to rebound from my last round of not feeling good.

I’ve been on a short leash lately. The pain was starting to get to me again, and this whole musical medicine thing is becoming beyond annoying. Doctor C decided to up my dose of flexeril from 5 mg to 10 mg. This caused me to go from feeling exhausted to feeling drugged and dazed. I have to take the flexeril early enough at night so that I am actually able to get up in the morning and be functional for work. I’m still trying to work out the kinks.

Well, my weekend started with a snag. I took the train home. At least, I attempted to. The east bound train ended up getting in two hours late, so I didn’t get home until two and a half hours after I was actually supposed to be home. For me, traveling is exhausting. So this experience really pushed me to my limits.

I was hoping to get a lot of reading done for work over the weekend, but that didn’t really happen. I think it was important that I attempt to rest and relax, though.

I was a little anxious about this weekend. Seeing a bunch of people that I only see a few times a year is hard enough. Having seen these people last, pre-diagnosis, and feeling pretty bad about my appearance as of late made the situation even more anxiety-filled.

And I’m still sporting my super hot bruise from my blood draw a week and a half ago.

That was the biggest question I got this weekend – “What happened to your arm? Where’d you get that bruise?”

Paying For Your Chronic Illness At The Cash Register

I heard a very interesting story today on CNN, which as far as I can tell was taken from an article from http://www.businessweek.com/ (magazine).

The article, entitled, “Your Lifestyle May Hurt Your Credit Score,” can be read here.

The article states that some credit card companies are limiting credit lines based on purchases (i.e. where you spend your money) – marriage counselor, bar, massage parlor – to name a few.

Another article on the same topic from the Washington Independent states that credit card companies are trying to penalize people for going “morally astray.”

The article doesn’t go into more detail about what other kinds of purchases are being penalized, but imagine how quickly my mind went from marriage counselors to chronic illness and the related topic of medical expenses. I, for one, always try to pay for prescriptions (I get these from a hospital pharmacy, not a regular drugstore) and appointment fees by check because I find them easier to keep track of.

In other words, I don’t know how these things would show up on a credit card statement…

But what’s preventing credit card companies from seeing medical expenses and decreasing your credit score. If a person who drinks socially or enjoys massage is a credit liability, certainly a person with a chronic illness is. With this line of reasoning, chronically ill people probably have more expenses and are not as easily able to pay their bills and, who is going to pay your bills if you are, for whatever reason, unable to do so?

And let’s not forget that there are a lot of stigmatized illnesses out there. Plus, many people with chronic illness find such things as massage, acupuncture, and other similar things therapeutic. Plus, a lot of people with chronic illnesses seek help from therapists for a variety of purposes.

So, why do I think this is timely? As we all get ready to celebrate Independence Day, I’ve been thinking a lot about independence, more generally. I think a lot of times chronically ill people feel like they are dependent on others and would prefer not to be. Or they feel, often unnecessarily, like they are a burden to others.

Another issue that chronically ill people face is disclosure. Who do they tell about their illness? How and when do they tell and what do they say? To me, this measure would force disclosure on chronically ill people. It’s often hard enough to disclose your illness to the people you are close to, let alone complete strangers.

Plus I think it’s pretty interesting that credit card companies, who prey on people’s vulnerabilities, think that they are good judges of what is “morally” proper.

This whole credit card thing puts a whole new spin on personal freedom, doesn’t it?

Call For Submissions!!!

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PLEASE FORWARD
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CALL FOR SUBMISSIONS:

Are you:
- A woman in your twenties or thirties who has a chronic illness, or
- A woman who is older, but was diagnosed with a chronic illness in your twenties or thirties?
- Are you either one of those and you blog about your illness?

If so, I am working on a project collecting essays from women about their experience with chronic illness. There are many books available that chronicle the story of one person. And they are great, but… I’m interested in providing women like me with a variety of stories that they can relate to. Although the diseases and symptoms may be different, the overall experience of chronic illness is very similar. I am also interested in having people tell their own stories.

These stories should be in your own words! Tell it well and tell it from the heart!!!

Submission guidelines are the following:
- Essays should be between 5 and 20 pages.
- Please also include a few pieces of advice at the end of your essay that you think other women with chronic illness might find useful.
- Please include a paragraph or so about yourself.
- If you are so inclined, include a picture of yourself.

The end goal is that these essays will be compiled and turned into an anthology for publication.

*** DEADLINE FOR SUBMISSION IS OCTOBER 1, 2008 ***

ABOUT THE EDITOR: Leslie Rott holds a bachelor’s degree in English and Sociology from the University of Michigan. She is currently a graduate student in the sociology Ph.D. program at the U of M. Expressing talent in journalism during her days as an undergraduate student, she has written for a variety of publications, working as a reporter for The Mackinac Island Town Crier and The Michigan Daily. She currently authors the blog Getting Closer To Myself (view here), which chronicles her journey with her own illness and other aspects of her life. And she was recently interviewed by Rosalind Joffe for her widely read blog, Working With Chronic Illness. The interview can be found at (view here).

Submissions or questions? E-mail: gettingclosertomyself@gmail.com.

Best Foot Forward

Another nod to a fellow blogger.

I had to half laugh when I fed the title of Rosalind Joffe’s post, “You Can Live With Chronic Illness And Still Love Those Shoes”.

I’ve been thinking about shoes a lot lately. As of late, I have three types of shoes that I wear:

- Winter boots
(I live in Michigan, so these end up being warn about four months out of the year!)
- Gym/tennis shoes
- Flip flops
(I am not sure how great these are, but they feel pretty good to me)

Yes, these three types have become my shoe repertoire. Not very glamorous if you ask me.

As I’ve mentioned before, I’m not always so steady on my feet. Some of that is illness related, some of it is just the fact that I’m a total klutz.

But you’re probably wondering… Does the girl actually own more than three pairs of shoes? Of course I do. And I love them. And I want to buy more. But what used to be a concern for comfort is a lot more important now.

Shoes that are uncomfortable are just no good. A bad pair of shoes can throw an already off-kilter body severely out of balance.

I haven’t bought a new pair of shoes since the summer (last summer). Now all of you girly girls out there don’t go gasping at my fashion faux pas.

I think that buying clothes and shoes are related a lot to self-esteem. And as I talked about last week in my post, “Illness And Self-Esteem,” chronic illness and be a pretty big buzz kill in the self-esteem department.

I think that chronic illness makes you more realistic about a lot of things, shoes included. Maybe there are some of you out there who think, forget comfort, and are going to wear those stilettos forever. But for me, the heels only come out when absolutely necessary.

And maybe in some ways that’s better. The nice shoes only come out for special occasions. They’ll last longer that way. And so will my body, feet included.

A Matter Of Semantics

I want to draw your attention to a post by Laurie Edwards on her blog, A Chronic Dose.

In her post, Illness, Wellness and Storytellers, she talks about issues that bloggers face in what they write about, how much they tell, and how they identify those they write about.

I agree with her on the account of not identifying people. From my very first post, I suggested that the way I tell my story might be very different from the way my doctors or those around me see it. Therefore, I would never want to risk anyone feeling like they had been directly misrepresented. These are my interpretation of the facts, no one else’s. Additionally, I would never want to hurt anyone’s feelings or make them feel bad. Some times my posts are based on experiences had with one person, but other times, most of the time, they are based on a combination of similar experiences that finger no one person in particular. And this is the way I want it to be. The purpose of my blog is not to hurt and demean others.

I also agree that we have to decide carefully which stories we tell and which we do not. However, I struggle with this. I by no means put every aspect of my life on here. Why would anyone want to know the banal details of my life? And maybe to some of you think the entire blog is banal. You’re entitled to your opinion. But it definitely is a balancing act, deciding what is post worthy and what is not, and what parts of the stories we decide to tell are worthy of being told.

Recently, I have been pondering the following:

Should the names of illnesses and medications be capitalized? I don’t wonder this because I’m concerned with the proper punctuation, but for myself. Do these “things” deserve to have capital letters? Do they deserve such a place in my life that they are capitalized? Some of you may notice that the punctuation of medication and illness names vary from post to post. I can’t really even say what this is dependent on – or why I do it one way one day versus the other way the next.

I think Laurie makes some really interesting and provocative points in her post, and I urge you all to read it.

“Alone In The Kitchen With An Eggplant”

I wouldn’t normally do this, but my friend and a former teacher of mine, Jenni Ferrari-Adler, has a great book, “Alone In the Kitchen with an Eggplant”.

The book is a collection of stories about eating for one.

Jenni sent an e-mail letting her friends know that the book came out in paperback today.

It’s not as if Jenni’s relying on me for press. She’s been all over the place with this book and it has received some pretty great reviews.

I just figured that some of you might be tired of me talking about books about chronic illness. This one isn’t. But I think we can all relate to feelings of loneliness.

Plus, it’s a really great book.

So, check out Jenni’s website, http://aloneinthekitchen.com/ and, better yet, read the book (Jenni’s book on Amazon.com).