Monday, April 25, 2011

Adventures In Blogging: WEGO Health Webinar And “Chocolate & Vicodin”

I had a few blogging-related experiences last week that I wanted to share.

I had the opportunity of being an audience member of the WEGO Health Webinar “Navigating Your Health Narrative” about health blogging, and I also read the book “Chocolate & Vicodin,” written by blogger Jennette Fulda.

I had never taken part in a Webinar prior to this one.

On the Webinar panel were bloggers Lisa from Brass and Ivory and Jenni from ChronicBabe, and a representative from WEGO Health. They addressed topics from starting a blog, why to blog, finding your blogging voice, disclosure, promoting your blog, community building, ordering your blog, and blogger burnout.

For me, many of the topics were things that I already knew about, like starting a blog and why to blog.

Both panelists talked a lot about social media, utilizing Facebook, Twitter, and other web resources. I had never heard of Networked Blogs, as part of Facebook, but it is something I am looking into to streamline my blog posting to Facebook.

Something else they talked about that I hadn’t considered is an editorial calendar in order to plan what you are going to write about. I have had a bit of experience with this in writing for Health Central, but not for my own blog. Both Lisa and Jenni expressed not really relying on editorial calendars, and leaving a lot of room for “creative freedom”.

There are definitely dates I commemorate by posting, but for the most part, I just write what I want, when I want. And I think for my personal blog, this works well. I think it would take a lot of the fun out of blogging if I tried to stick to a schedule. I have enough deadlines with graduate school to keep me disciplined.

Another thing they talked about was keeping conversations positive. One thing I have noticed is that the tough stuff tends to get more play than the good stuff. Maybe this is because the good stuff happens so infrequently. Anybody have thoughts on this?

Finally, Lisa and Jenni warned about blogger burnout, which tends to happen in the first few months of blogging. I think you have to pretty quickly find your niche and facilitate communication with other bloggers. For me, once I started getting comments and knew there were people out there actually reading my blog, I was hooked. Three years and counting…



What drew me to this book was the title, “Chocolate & Vicodin,” and the cover art.

In a very brief summary, the book is about a woman who gets a headache that won’t go away. While I can honestly say that I can’t completely imagine what this would be like, although headaches are a big lupus symptom of mine, I did find some commonalities…

“I realized I had skipped becoming my mother and had gone straight to becoming my grandmother” (214).

Wow, I can so relate to this. I skipped feeling like a 50 year old to feeling like an 80 year old. And my 80+ grandma and I swap arthritis war stories all the time.

“All I could do was swallow the pills and say a prayer” (215).

I can really relate to this, too. It’s no secret that medication working for me is a hit and miss type of thing. All I can do is have confidence that my doctors are doing the best job they possibly can, and that I do my part as a patient, taking my medication diligently, even when it seems like it isn’t doing much, and making sure that I voice concerns about medication efficacy to my doctors.

“Pain was lonely. I wanted someone to stand next to me and share my view of the world” (248).

Need I say more?

”Pain and suffering were siblings, similar but not the same entity” (267).

She’s right. Pain and suffering are related. I think people think that pain is objective and suffering is subjective, but I’m not sure that’s the case. I personally think and pain and suffering are both subjective.

Anyway, this was a good read. There weren’t as many commonalities as I expected, but it is another story of a twenty-something woman facing chronic illness head on (no pun intended).


(Fulda, Jennette. Chocolate & Vicodin. New York: Gallery Books, 2011)

Thursday, April 21, 2011

When Chronic Illness Gets In The Way (Or The Third Date Rule Revisited)

My last post was about a recent flare. It hit me pretty hard for a few days, and has seemed to level off a bit. That’s not really what is wearing on my mind, though.

It’s been about two months since my boyfriend dumped me. I say it that way because that’s the way it happened.

It feels like so much longer, but I guess that’s because when you go from spending everyday with someone and they are no longer there, it does make time drag on.

I wish I could say that I’ve stopped thinking about it, but it’s the background music that is always playing in my head. And it’s making me crazy.

We met a few weeks after the breakup happened to talk about things, because I felt I deserved closure. But I got nothing. NOTHING!

Lately I feel starved, but it’s not food I’m craving. It’s answers, understanding, and other things that I may ultimately never obtain.


There’s part of my dating experience that I haven’t shared. Around the time that I met my now ex-boyfriend, I had been dating another guy. Things were going fine with him, but ultimately, I felt more of a connection with the man that I just finished spending over a year with.

This other guy was fine, other than one major flaw. Before Facebook tightened its security, by virtue of his friends having mutual friends with me, he was able to view my profile, found out about my blog, and ultimately, found out about my illnesses.

When the third date came around and I disclosed to him about my illnesses, his response was that he had known I was sick before we went on our first date.

As I told this person, his friend had no right to do that. It wasn’t his news to tell.

Now only MY friends can view my information. By virtue of online dating, I do not share my last name, and will NOT be Facebook friends with someone unless we are actually dating.

By virtue of blogging, I am obviously open about my illness experience. But it’s one thing writing to an audience of other chronically ill people, it’s another thing to be writing for potential suitors (Suitors? Really? Mates?). Each post is a snippet of my life. I do think it’s easier in some ways to read the words that I have written than try to explain the intricacies of life with illness out loud. I guess I’m just better at expressing myself in writing.


In thinking back to my last relationship, maybe I was once again seduced by the fact that this guy was okay with the illness stuff. It was very hard for me to tell him, in the beginning, because I didn’t want to have to go through what I did with my ex-ex, but I was also worried that because he was a doctor, he wouldn’t want to spend his non-work time with someone who was sick.

But he told me that we all have our things. And then he was so amazing when I was in the hospital, like spending the night in the ER with me was the most natural thing in the world.

The most recent flare that I had was the first time I had, had in a long time. And it sucked. My arms and legs ached, my throat hurt, and I had a pounding headache. To boot, one arm hurt so bad that I couldn’t even use it to hold the cold compress on my head. The last time I felt like this, my ex-boyfriend was in the picture.

(Plus it was my Methotrexate day and I got my period.)

You know how people worry when someone dies that they won’t be able to remember the person’s face? Well I can still see his face, but I feel like there’s nothing left for me to hold on to. It’s not that the memories are fading. It just feels like insert any guy here, that the things I loved weren’t qualities that only he has.

I remember sitting on the bed with my boyfriend, we were at his parents’ house, about three or four months into dating. And he was surprised because he at first thought I was too young, not religious enough, and he didn’t want to date another redhead. And I had similar feelings. The last person I wanted to date was a kosher-keeping, redheaded, Jewish doctor. And yet, there we were. And I think we took that as the ultimate reason to be together; because you can fall in love with the person you never thought you would give a second glance to. But maybe we had it totally ass backwards.

I don’t think our relationship was a mistake. It was a happy thirteen months. But it sucks when you’re alone and feeling like crap on a Saturday night and all you want to think about is all the reasons the relationship should have worked, and all you can think about are all the reasons why it shouldn’t.

We moved quickly in terms of emotional intimacy, and slowly in terms of physical intimacy. I took this as a good sign, especially when he was parading me around his family and friends. Not only did I lose him, I lost them, too.

He was totally not a planner, which I think worked to the advantage of my illnesses in some ways. We just took things as they came. But given that he is a doctor, there is a level of emotional detachment that comes with his job, and ultimately, that carried over into our relationship.

I can’t say that I can explain the way the break-up occurred, or why I deserved to be treated the way I was treated in the end. He was out of town for four days, came back, said we had to talk, and ended it. And made me move all of my stuff out of his apartment that night. I didn’t think that anything could have been more hurtful than the guy before him point blank saying that he was with someone else, and yet, he managed to hit that out of the park. We spent over a year cultivating a relationship that it took about five minutes to destroy.

I hate dating. I love dating one person, but I hate being a serial dater. I’m just not good at it. Plus, there is the whole chronic illness thing. And now that I’m back on the “market,” the one thing I’m looking least forward to is having to disclose my illnesses all over again.

I wish I could just say that I have these illnesses, but that they don’t really interfere. But that’s not true. I mean, they ebb and flow, but the reality is, my short term memory sucks, sometimes I lose my words mid-sentence and can’t remember what I want to say. Sometimes my hip freezes up in compromising situations. Sometimes I’m in so much pain or feel too crappy to get off the couch. But mostly, lately, I’m just me.

I imagine that some of those close to me who read this will be surprised because they thought I was coping better with things. But the reality is, I’m sick of coping. I’m sick of having something to deal with. I’m sick of having to overanalyze everything I’ve done and everything I do because I feel like a failure.

I’m not the one who gave up on the relationship. I’m not like that. I never would have done that. I don’t give up easily. And maybe that’s part of the problem. But I hate having to count losses. I hate having to measures days, months, and years on what has been lost rather than on what has been gained.

Friday, April 15, 2011

Lupus Smart! Me Stupid!

(The title of this post should be read aloud in your most caveman like voice)

I did something kind of stupid the other day. It was a gorgeous day out, so I decided to go for a run. I’m not a runner, but I decided to run a block and then walk for two or three and then run again. I’m not sure exactly how far I went on my run/walk, but it was kind of far.

Well, on Monday I woke up with my legs feeling totally obliterated, like they had been run through a paper shredder. When I got up, my right arm was totally numb. And I have this sore on my lip; it’s like a bump, but the middle of it is cracked. It’s basically like a characteristic lupus mouth sore, but on the outside.

The other nice souvenir I got from my attempt at running was a fabulous reaction to the sun. My skin was not only hot and red, but it looked like I had a rash in just about all of the places that were exposed. That night, the redness had spread. This is a pretty classic lupus reaction to the sun.

So why I wasn’t I prepared for these classic lupus symptoms? First off, these were not symptoms that I had when I was first diagnosed with disease. Second, over the winter months, I was focused primarily on my arthritis, because for me, these illnesses are somewhat seasonal (watch for an upcoming post about this topic). Third, I think that for a minute, I forgot that I had lupus.

Here is the evidence to prove number three:

Last week was one of the most productive in awhile. Nearly more productive than the rest of the semester combined. I’ve been on fellowship, trying to get my dissertation together, and dealing with people who don’t want to work within my timeline. But this week, I was able to move forward on things. So I submitted two papers for publication, submitted two funding applications, completed my Institutional Review Board application for my dissertation research, finished my syllabus for the class I am teaching spring term, and prepared to send off the final draft of my prospectus to my dissertation committee. I also read four books, but I’m not quite sure how I managed to do all of this.

The problem with productivity is that, at least for me, there needs to be balance. So honestly, this week, I have spent most of it on the couch. I haven’t been in this much physical pain in awhile. And my emotional state probably hasn’t helped much (more on that in an upcoming post).

Last week was a classic example of the way my entire life used to be pre-illness. Doing 25 things in a day, staying up late working or reading, and putting the pedal to the metal. And now I am paying for it. BIG TIME!

There’s part of me that feels like this flare kind of snuck up on me. And then as I go back and read this post, all I can do is shake my head. I’m an idiot. This flare didn’t sneak up on me. I practically asked for it. I had it coming.

I pushed my body, and my body pushed back. No surprise there!

Whenever I try and act like I don’t have lupus, guess what?

Lupus takes me to task and reminds me that I do in fact have lupus, and that it actually does have a pretty strong hold on my life.

It’s amazing how easy it is to fall off the wagon, and it’s even more amazing how easy it is to forget how to get back on.

Monday, April 11, 2011

A Very Rheumy Anniversary

I started my blog almost three years ago to the day. In the first 10 days, I posted nearly 50 times. I didn’t know what I was doing, as a blogger or as a patient. I felt like my life had been robbed of something that I would never get back.

I can’t quite put my finger on what I was robbed of because I don’t view the situation the same way now. Certainly my life has taken turns that I never expected it to. But it has brought some pretty amazing people into my life, and maybe some not so amazing, but that’s a whole other issue.

Recently, I asked my rheum to write me a letter for a scholarship I applied for. Along with information about my diagnoses and disease manifestations, he wrote the most thoughtful letter about me, thoughtful to the point that it brought tears to my eyes.

And this is a true testament to how our relationship has changed. When I first started seeing my rheum, the relationship was strained, to say the least. I really did not like him, and I believed that he felt the same way about me. We fought about treatments and the fact that he believed I should quit school.

I’ve often joked that he’s the longest relationship I’ve had with a man other than my father. And this continues to be true, unfortunately.

He has been a constant in my life, and I am truly thankful to be under his care. I worry about someday moving out of Michigan and having to find a new rheum. But for now, I’m satisfied with what I’ve got.

In many ways, it’s weird to try and celebrate something that most people think of as being a negative experience. On the other hand, if we don’t celebrate the triumphs, and we only focus on the tragedies, well, the picture is pretty grim, then, isn’t it?

In many ways, I view this time as the place that my old life ended and my new life began. I’d like to say that this is just a chapter in the book that is my life, but it is so much bigger than that.

There are still things I have yet to come to terms with, like the fact that my emotions are heightened. The good feels better, but the bad feels worse.

It crazy to think that another year has gone by already. It seems like only yesterday that I began the adventure of diagnosis.

There are many dates to pick from that hold significance as far as my illnesses are concerned:

July 16, 2006 was when I had a massive episode of vertigo, which turned out to be a rare precursor symptom to lupus.

September 11, 2007 was the first appointment I had with my new PCP at the time. So began the “fishing expedition” to find out what was wrong with me.

January 9, 2008 was my first rheumatologist appointment.

April 9, 2008 was the exact date that I was diagnosed with both lupus and rheumatoid arthritis. It was a long, difficult road to get to that point, having to relive and examine my entire medical and family history. There are so many theories, and at this point, they truly no longer matter. My life is what it is.

In some ways, this commemoration feels a bit forced to me. I feel like I should have profound things to say about lessons learned and where my life is headed. But right now, today, I don’t really.

Maybe I’m feeling overwhelmed, for several reasons. One, I’ve decided to begin working, in earnest, on my memoir, the story of my life so far. So I’ve spent the last few days going through all of my posts from 2008 for inspiration. And this is a very overwhelming task.

Maybe it’s because I attempted go for a run yesterday and ended up facing lupus and rheumatoid arthritis right in the eye. I am definitely worse for the wear today. My hips are killing me. And I had a nasty lupus-induced reaction to being out in the sun.

And maybe it’s because, in some ways, this moment is rather anticlimactic. I find myself, once again, facing an uncertain future on my own.

The date that I didn’t mention above is April 17, 2008. That was the day I started my blog, the day I made the certain decision to put myself firmly into the chronic illness world. So maybe more than anything, that’s what I should be celebrating. That I’m still here, still writing, that despite everything that has happened over the years, the one constant and consistent thing has been this blog, and its loyal readers/followers. And that, as I attempt to work on my memoir, this whole illness experience has put me one step closer to my lifelong dream of being a published author. So I guess I do have something to celebrate after all!

Friday, April 1, 2011

Sick Or Something Like It

As far as chronic illness is concerned, help can often be a strange bedfellow. We want help. We don’t want help. We know what we want/need. We don’t know what we want/need from others. At least this has been my relationship with help as it relates to my chronic illnesses.

For me one of the most helpful things has been the virtual chronic illness community that I have become a part of. Community building takes time and effort. While the internet has certainly helped mitigate this, there is still something to be said for good, old-fashioned, in-person communication.

But by virtue of our illnesses, we don’t all have that luxury.

Kerri of Six Until Me often shares heartwarming stories about interactions she has with other people with diabetes or those who are close to a person with diabetes. Quite honestly, her stories make me really jealous, because I can honestly say that I haven’t ever had the types of experiences she talks about in person. I’ve never been in line at Dunkin Donuts, or at the grocery store, and have lupus become the topic of conversation. (See also Laurie Edwards’ recent post - IRL: The Rare Disease Edition - at A Chronic Dose)

Why is this?

Well, in some ways, we spend so much time and energy trying to make ourselves invisible to others, to make ourselves seem totally okay, that it’s no surprise these kinds of interactions don’t happen. I think many of us who are chronically ill were quite independent pre-illness, which makes having to ask for help even that much harder.

If you don’t look particularly ill (whatever that means!), and you’re not talking about your illness (because there is a time and a place), how are people supposed to guess that you need help? I think that’s why so many of us tend to search for common ground and understanding from those who are also chronically ill. So much less needs to be said, and so much more is understood.

I’m lucky that early on in my immersion in the chronic illness blogging community that I met Maria Pfeifer through Rosalind Joffe. It’s the type of connection that once you have, you can’t imagine how you ever lived without it. I call Maria my “lupus mom,” but she is so much more than that. She is my friend, and there are times that I have confided in her and no one else. The thing is, I’m in Michigan and Maria is way over across the country in Oregon. I never would have met her if it wasn’t for the Internet. We try and chat in some way everyday, but we have met in person once.

I have participated in the yearly walks for lupus and rheumatoid arthritis for the past few years. And obviously, there are people there that have my illnesses, but for some reason, at least for me, these events never really build concrete connections with people. It’s more of a coming out party of sorts. More of I’m coming out so let’s get this party started as opposed to Let’s come out and make friends.

Recently, I was talking to a relative who told me that she does not view me as being sick. She said she views people that have mental illness or cancer as sick, but not me. I don’t want to focus on her definition of sick, I just want to focus on the fact that she doesn’t view me as such.

This brings about an interesting question. If you are chronically ill, are you sick, too? Is sick too much associated with acute illness? Is being sick all of the time just too sick to actually be sick? Okay, I’m getting bogged down here.

But the thing is, given that the definition of who is sick varies from person to person, what constitutes the need for help and giving help varies greatly, too. Again, asking for help is especially hard when you haven’t disclosed to people about your illnesses, or people perceive you as being totally fine.

I know that when I was first diagnosed, I had no idea what I needed from other people. When your life appears to be in shambles it’s hard to know at which point to start picking up the pieces.

But the point is that help is definitely a four-letter word. It’s hard to ask for, sometimes hard to get, sometimes hard to accept, and sometimes hard to repay. And this may be the crux for us who are chronically ill. Maybe we feel like we are a constant drain on people, and that we will never be able to give back all of the help that we have received from others.

I still have a hard time asking for help. But I think, and hope, that I have become better at and more gracious when I do receive help.

I think for many of us, needing help is the grim reminder that our pre-illness lives of fierce independence and reliance only on oneself are no more. But everyone will encounter a situation in life when they need help, sick or not sick. And let’s face it, since we aren’t masters of everything – although some might like to think so – we will all face situations that we can’t fix on our own.

Life is full of four letter words (including life). Help, sick, well, pain, love; there are thousands, the list goes on and on. Help and chronic illness can either go together like oil and water, or like peanut butter and jelly. Whether you choose to view help as a nasty four letter word is ultimately up to you.