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)

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.

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.

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!

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.

For All We Know...

“[…] For all we know

This may only be a dream

We come and we go

Like the ripples of a stream […]”

- “For All We Know,” Donny Hathaway

Illness has changed my life in tangible and intangible ways. For all I know, it may be simultaneously the best and worst thing that has ever happened to me. It has given me perspective.

I think it’s easy to think about the things we can’t do because of illness. But it’s harder to think of the things that illness has allowed us to do. This is a much more introspective task.

Illness has shown me that I possess strength within me, but I do get tired of hearing that such and such experiences will make me stronger. Maybe I’m strong enough already, maybe I’m not that strong at all.

Illness has taught me how to fight, not in battling the disease, but in fighting for myself, and the treatment I deserve in all aspects of my life.

In illness, as in life, you have to pick your battles wisely. You have to be willing to fight the good fight, but also know when to step away and let others take the reins.

Illness has taught me, as I have discovered recently, that I’d take physical over emotional pain any day.

Illness has taught me not to hold back, to share my feelings, and love with my whole heart, body, and soul. And that makes me a far different person than I was before I got sick. Sure, I had crushes on guys, but I never really put it out there. Now, I grab the bull by the balls (pun intended). Yes, the bull, and yes, by the balls (my girlfriends will understand this).

The main thing illness has taught me is that we can’t control everything. For all we know, this could be our last day on earth. For all we know, we might live another 80 years. Those of us who are chronically ill feel the ticking of time more acutely, the need to make every day, every minute, every hour count.

I don’t think it was until I got sick that I realized I really wanted to have children. It’s like discovering I didn’t have the body I wanted, made me realize that I may never have the life I wanted. With the reality, at least in the beginning, that I may not live long enough or be healthy enough to have children.

With my ex-boyfriend, I even considered and almost relished the concept of being a stay-at-home-mom, of leaving academia behind for the most important role of my life.

Recently, several people have made the comment to me that you don’t have to have a man to have children. But the problem is, there are going to be real physical challenges. As much as I want a child, there is no way that I would do that as a single parent, knowing that there may be times I won’t physically be able to care for a child.

Illness has made me realize that the little stuff doesn’t matter. It has shown me to take absolutely nothing for granted.

When life gets too hard and I think that I can’t, I just keep telling myself “I think I can, I think I can, I think I can.” Maybe I will, maybe I won’t, but at least I tell myself I can before telling myself I can’t.

Ultimately, if there is one thing that illness has done for me, as the name of my blog suggests, it has brought me closer to myself.

A Singing Vlog: (Love Is) All She Has To Give

Yes, that’s right. A signing vlog. Me, on camera, singing. I wrote the poem that follows, and decided to put it to music, that is, a tune inside my head. And then I decided to record it and sing it for you all. I’ve been wanting to write or vlog about how I’ve been feeling, but really didn’t know how. So this poem really captures my life at the moment. So enjoy this rare treat of my tone deaf self.

(And sorry folks, but for this one, I had to leave my glasses on in order to read the poem I wrote)

(Love Is) All She Has To Give

She wakes up
Trying to face the world alone
Standing on two feet
Not knowing where to go

Her legs are short
But they carry her
Where she needs to go
Her hair is long
As long as the wind blows

She loved her boyfriend
And she loves her mom and her dad
She feels like love
Is all she has to give

Her brain is big
As big as the sky
Her heart is whole
And she holds her head up high

Her body is broken
But her spirit is strong

If there’s only one thing
In this world that she does
She feels like love
Is all she has to give

She feels like love
Is all she has to give

White Girls Don’t Get Lupus

Some people say that white men can’t jump.

And some people say that white women can’t get lupus.

But tell that to all of my fellow bloggers who have lupus…and are white…

I evidenced this myself firsthand in attending a lupus support group – in a predominantly white area – where I was the only white girl in attendance.

So there. It’s no secret that lupus has higher incidence rates in African Americans, Latinas, and Asians.

So why all of this talk about race all of a sudden?

Because, unless you live under a rock, you’ve probably heard that Benlysta – the first drug to specifically treat lupus in over 50 years – was approved yesterday by the Food and Drug Administration.

According to the most recent  New York Times article, “The drug is not recommended for patients whose disease is severely damaging their kidneys or central nervous systems because it was not tested on those patients. Moreover, African-Americans, who have a far higher incidence of lupus than white people, did not appear to respond to the drug.”

The approval of Benlysta could be a victory for us white girls with lupus. But it could also mean that those predominantly affected will not receive any benefit.

Will it be considered “off-label” for doctors to prescribe Benlysta to African Americans? Because the reality is, it hasn’t been approved for them.

Isn’t it disturbing to anyone else that the majority group who is most affected by this disease are the least likely to receive help from it? And is it really any surprise that a disease that affects primarily minority women has had such a difficult time gaining treatments?

Plus at a cost of $35,000 a year, I can’t imagine that patients are going to run in droves to their doctors, asking for this drug, especially considering that the findings from the trials have been relatively mixed.

I definitely think that this is a milestone to commemorate: the first drug for lupus in over 50 years. But, as always, I remain skeptical. No drug, no matter how good, is a miracle cure. There will always be side effects.

And it seems like, for a drug to treat lupus – that can’t treat African Americans, those with kidney involvement, and those with central nervous system involvement – who can it treat?

Oh yes, us run of the mill white girls, some of whose doctors don’t even believe they can actually have the disease.

(And please note the irony here: I’m probably one of few who would be able to take Benlysta. Also note that my position on Benlysta has always been the same.)

A Personal Commitment To My Readers

I am grateful for the expanding opportunities I am being offered, and have entered into a partnership with HealthCentral.com. I am looking forward to seeing how the relationship develops.

That said, this blog, and the readers of this blog, mean the world to me. You have all been there through good and bad, with encouragement and advice. You’ve allowed me to spout off and rant, and ultimately, to grow into my illnesses.

I truly don’t know where I would be without this blog or the readers of it. So please, continue to support me, and stay on this journey with me.

I am not leaving this blog behind. I intend to keep this blog going. But I am also excited to be writing new material for a broader audience, although I’ll be focusing on rheumatoid arthritis for Health Central.

You can read my first post here.

And I have added a tab at the top of this page that will provide links to my Health Central posts.

As always, thanks for reading!

I Just Want To Be “Normal”

“[…] Or should I give up

Or should I just keep chasin’ pavements

Even if it leads nowhere

Or would it be a waste

Even if I knew my place

Should I leave it there […]”

- “Chasing Pavements,” Adele

I’ve been thinking a lot lately about what is worse: being chronically ill or being dumped. And I’ve come to the conclusion that being dumped is worse. With chronic illness, it’s forever, but there’s always the possibility of remission, or better meds, or possibly, a cure. But with being dumped, you think it’s forever, but it turns out to be never.

I wish I never would have gotten dumped.

And I wish I never would have gotten sick.

In my heart, I know that my illnesses were not the reason that my relationship ended, but trying to be upset with something or someone other than my ex-boyfriend, illness is the logical first choice. Although come to think of it, in a roundabout way, they did.

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

It feels like someone has my heart in a vice grip, and they are simultaneously strumming rubber bands against my heart. That’s the only way I can describe the pain I’m in right now. The pesky few pounds that I gained during my relationship came off in no time once the relationship was over. The break-up diet. I don’t really recommend it. Living basically off of tea and toast because my stomach hurts all the time. I sleep in fits, waking up expecting to be in his bed and not mine.

At my yearly gyno exam, which came less than a week after my break-up, my blood pressure was 136/100, practically in a hypertensive crisis with that bottom number. I can’t say I’m proud that this break-up has sent me into a tailspin, but it’s hard not to. I keep trying to tell myself to hold it together, but then something will happen, or someone will say something, and it will send me into a crying jag. I feel like I haven’t done much more lately than stare at the wall. There are two critical differences between this relationship and my last two: 1) This was about love and the others weren’t, and 2) I was totally blind-sided by the ending. There was no warning. No matter how much the other two hurt, they were over before they really began.

I was convinced he was the one, that I had gone on my last first date ever. I was also convinced that he was truly willing and able to deal with the illness stuff, not because he had to, but because it was a labor of love. When you love someone, you make sacrifices. There were certain things I was willing to change and give up for him, because when you truly love someone, the other person comes first.

Not only did he stay with me in the hospital, but he was a health advocate. He made sure I was seen by the best people, and fought for me when I ran into red tape. And he was there for me the few times that I really didn’t feel good. I’ve honestly dated a couple of guys who said that if I were sick, they would throw a blanket over me and go to work, pretend that I wasn’t even there.

He stayed up all night reading my blog. And he cried. And he told me that I was the strongest person he knew.

I didn’t know it was possible to hurt worse than I did when I found out that my ex-ex had cheated on me. But the truth is, there was no love in that relationship. He was only happy when I was miserable. And I was attracted to him because being with him was a teenage fantasy of mine. But there was love in this relationship. I guess “was” is the operative word.

When I started dating my ex-boyfriend, I wasn’t really expecting to fall in love. I had been dealing with two major hurts, one in which the guy was crazy and bordered on stalking, and the other who was a teenage fantasy come to life and nothing more. I was also dating someone else. Yes, I was dating two guys at the same time and it was really stressful for me. Having to break up with the other guy was one of the hardest things I ever had to do, but it wasn’t fair to hang on to both of them. I wasn’t used to being on the other end of the break-up train. And now I am left to wonder what might have been with this other person.

I realize now that there was a huge gulf between us. While he was worried about a bunch of petty shit, I was concerned about the big picture. And apparently, we never met in the middle. He didn’t understand, that for me, being happy meant more than anything. I didn’t care about the little decisions because my life in the last few years has been so encompassed with major, life-altering decisions. I didn’t care what we watched on TV. I was with him and happy. That’s what mattered. Not what TV show we had on. In the end, I was too indecisive and agreeable. And for that, the relationship was doomed to fail.

But I finally understood the words to cheesy love songs. They spoke to me. They spoke about my life.

And I guess you’re only as alone as you feel. But why is it that it’s always the one person who isn’t there that makes the difference?

Do I have “wounded heart” written on my forehead? Everyone’s being so nice to me and it’s a little bit hard for me to handle. While illness was something that caused people to not know what to say, when it comes to matters of the heart, people know exactly what you’re going through; after all, who hasn’t loved and lost?

For example, my parents and I were out to dinner. I order pancakes, but only ate one of them. We know the manager of the restaurant and he came over to talk to us. He asked me if there was something wrong with the pancakes, if I wanted something different to eat. With tears in my eyes and a heaviness in the heart, I said, “It’s not the pancakes. The pancakes are fine.” Because the thing is, the pancakes were fine. It’s everything else that wasn’t.

Like the bloody nose I got while crying hysterically while my boyfriend was breaking up with me. Or the mouth sores that keep cropping up. Or the tremors in my hands.

When I had a boyfriend, I was so jealous of everyone having babies. Now, I still am, but I stare at myself in the mirror, and I wonder if this body has the ability to be life sustaining. Right now, it’s not doing a very good job of sustaining me.

I thought my luck was changing. I thought that despite illness, I was lucky.

I thought I had found my happy ending. But happily ever after didn’t last nearly as long as I had hoped.

If it seems too good to be true, it probably is…

I just want to be healthy. And happy. And NORMAL.

When Love Isn’t Enough

Above is my “love note” that was printed in the latest issue of Lupus Now magazine.

Why the public declaration of love? Because in the dictionary, love comes before lupus. Coincidentally, it also comes before rheumatoid arthritis, too. (Lucky me!) Because I’m in love; every hour of the day, every day of the week.

But I guess that doesn’t matter now. What I intended to write here isn’t what I’m going to write, because what I was going to write about doesn’t exist anymore.

My relationship of over a year is over. And honestly, I’m as shocked as you are.

Devastated doesn’t begin to sum up the way I feel right now.

Relationships are hard. They take work. And you don’t just take what we had and throw it away, especially without so little of a coherent explanation. It just doesn’t make sense.

I remember our first date like it was yesterday, and our second, and our third, and our fourth. I remember how my head fit perfectly into the crook of his arm as we slept. I remember the way that he took care of me when I was in the hospital, how he stayed with me all night in the ER after working for 24 hours the night before.

But I’ll also never forget the look on his face when he said, “I need to talk to you.” And I’ll never forget the pain of having to pack up my stuff from his place, to exchange keys, and say goodbye. I’m nauseous just thinking about it.

Or the way he cried, too. But if doing this is so upsetting to you, why did you do it?

Right now there are too many memories. Too many unanswered questions. Just too much.

Does love conquer all?

I don’t know.

Does love heal?

I don’t know.

But I am certain that love helps, especially when you find the person who is the missing piece to your puzzle.

The thing is, I really thought that I had found that person. What’s more, I wasn’t scared anymore. Well, that’s not quite true. I did worry that at some point, sooner or later, this would all become too much for him, and he’d realize he signed on to a nightmare.

But now I’m the one in a nightmare that I wish I could wake up from. I saw myself marrying this man, and having children with him, and coping with the ups and downs of illness together. No matter what, we would get through it together, as long as we had each other.

I loved, and still do, love this man with all my heart. Together we made sense, or so I thought.

I’m scared, first, of living a life alone that was once so entwined with someone else’s. How to be single again? How not to go to his place or call him on the phone to share the events of my day? How to live with the specter of illness, as a never-ending cycle, without it mattering in intimate ways to another person? And I worry that my health, which in some ways was relatively stable while I was in this relationship, won’t stay that way.

I know that ultimately, I will survive this. That’s what I do. I survive and I soldier on. Writing helps me cope, so I’m sure I will be sharing more with you as things become clearer, although I’m not so sure they ever really will.

In, reality, illness took a backseat to love. So now I’m left with me and these illnesses, in a world that makes no sense at all. And for right now, that has to be enough.

When you look in the dictionary, love comes before lupus and rheumatoid arthritis. But there’s a single letter that comes before all three of those things: I. No matter what, I have to love myself.

Modern Medicine's Biggest Failure

OMG!  Do I really look like this when I talk?  Anyway, this is the prednisone vlog.  I'll warn you, it is a bit on the long side (about 11 minutes), but there is a bit of repeating.  I hope to try and do one vlog a month.  Let me know what you think about this one, and feel free to give any suggestions you have about the topic of future vlogs.   

Guest Blogger: Carla Ulbrich

I recently read “How Can You NOT Laugh at a Time Like This” by Carla Ulbrich. Carla is a fellow lupus blogger and her blog persona is The Singing Patient. I’ve invited Carla here today to tell you a little bit about herself and her book.

What does the title “How Can You NOT Laugh at a Time Like This” mean to you? (And by the way, the cover is super cute!)

CU: Thanks! I’m really happy with the cover art (I can’t really take credit for it – it’s all the graphic designer, Linda). I’ve been dealing with several chronic illnesses for years. One summer, my kidneys were failing and my legs and feet were so swollen I couldn’t wear shoes. My only pair of shoes was a giant poofy pair of Snoopy slippers. I wore them everywhere – the drug store, the doctor’s office. I got some really weird looks and comments. I had to use a cane to get around, and I walked really slowly. And I spent a half hour every morning getting on my compression hose. In the summer. In South Florida. And it seemed like every time I went to the doctor, I would leave just as the sky opened up with an afternoon thunderstorm. And me with no umbrella, walking through puddles in what were now essentially 2 giant sponges. Well, if I couldn’t find that funny, I was just going to be pretty ticked off on a regular basis. Somehow it went past the point of being annoying and embarrassing to just being ridiculous.

To me, it means when things are really bad and you just can’t take it anymore, you’re either going to cry, strangle somebody, or laugh. And if you’re sick, then you’re too weak to strangle anyone. And laughing is so much more fun than crying. They’re both great releases.

Comedy, they say, is pain plus distance. When everything is falling apart around you, it’s kind of a gift from the comedy gods – it’s half of what you need for great comedy. The more painful it is now, the funnier it will be when you have some distance from the situation. You can either create distance by letting time pass (“we’ll laugh about this later”) or by just mentally stepping outside the current situation and seeing the absurdity of it.

Laughter helps you relax, releases endorphins and lowers blood pressure. And humor helps you to gain perspective. It can seem impossible to laugh when you’re in the middle of a really tough situation. But the thing is, who needs a laugh more than someone who is suffering?

In the book, you write about the importance of humor in healing; can humor also be hurtful?

CU: Yes, of course. Humor can be mean. I think we all remember being taunted in the schoolyard. Some of those comebacks and nicknames were pretty witty, but they were mean-spirited. It’s really important that we avoid laughing at other’s pain when they are suffering, at least until they are able to laugh at it themselves. At one point I had lost my hair and was wearing a wig. I was at a folk festival with friends, and we were hanging around backstage cutting up, and I was laughing so hard I lost my balance and fell over. And my wig fell off! My friends all showed concern and helped me get back up. Then we had a good laugh about how I literally had laughed my head off. But if they had started laughing at me before they were sure I was okay, it wouldn’t have been funny to me at all.

Your blog persona is the Singing Patient. Did you write the funny medical songs on your CD Sick Humor while you were sick? Was that hard to do, or did it help you cope?

CU: Yes, I wrote them while I was recovering from a pair of strokes. Even though I was writing about my problems, the act of writing humorous songs about my current situation was a great distraction. It helped me step outside of what was going on and find the humor in it, and also helped me feel like myself, because I am a songwriter, and I was back to doing what I do. I find creativity to be so life-affirming. And as a huge bonus, it gave me something really fun to do during those long waits in the doctors’ waiting rooms.

So were you a musician before you got sick? Or did you start writing music to help yourself cope?

CU: Yes, I’ve been playing guitar since age 4 and writing songs since high school. I always wrote songs about difficult things I was going through – boyfriend problems, annoying roommates, difficult teachers. So I suppose it was natural to turn my lyric-writing efforts towards illness and medicine when that became the main struggle in my life.

Do you consider your book to be an illness memoir?

CU: I don’t think of it as an illness memoir so much as a collection of thoughts about what I’ve learned over the course of 19 years that I think might help other patients. I wanted it to be in bite-size chapters that stand alone, so that you could read it on the toilet – because heaven knows when you’re sick, that’s your second home.

You have lupus, but your book certainly seems to appeal to people with a variety of chronic illnesses. How did you do this? Was this intentional?

CU: That’s great to hear. Because my illness led me to a lot of specialists, and lots of drugs, and multiple hospital stays, I think I wound up with a lot of experiences that everyone who has any illness goes through. It wasn’t intentional, but really for the most part it does seem our struggles are the same – trying to get good care, struggling with blaming ourselves, seeking balance and meaning, dealing with friends and family.

In 2002 you had a pair of strokes that left you unable to use your left hand for months. Were you scared you wouldn’t recover?

CU: I would not allow that thought to take hold in my mind. I just refused to believe it. I did all kinds of crazy things to get my left hand to work again, so I could play guitar. I squeezed a tennis ball, I got a cheap ukulele and glued corn pads to my fingertips, I put those rubber tips that cashiers use on the ends of my fingers, and I talked to my hand (“talk to the hand!”). Most of all, I believed. I believed I would play even better than I did before the strokes.

What inspired you to write your book?

CU: Getting a book deal.

I wanted to write a book about this for years, to share with others in a neat package all the ways that I’ve found to make the challenges we all face more bearable. But seriously, a deadline is amazingly inspiring. I would not have a book without it.

You’ve performed your humorous medical songs as "The Singing Patient" for organizations such as the Lupus Foundation, Medicaid, the Alaska Palliative Care Conference, and Nursing in Practice. How do you make illness and pain funny?

CU: My number one rule is to only joke and sing about things I’ve actually been through. Since comedy is pain, and someone has to be the person in the joke experiencing the pain, it is best if it is me. I don’t want other people laughing at my pain until I give them permission, and so I don’t laugh at theirs.

Are you well now? How do you stay healthy? Do you think you’ll get seriously ill again?

CU: Yes, I’m doing well now, thanks for asking.

I am on a gluten-free, vegetarian diet. I do chi gung. I work out. I have a great husband and a sweet dog, and we usually have a good belly laugh every day.

What have you learned from your experiences?

CU: Friends are everything. Creativity is healing. Laughter is a great release valve. Pets are angels covered in fur.

I can have a tremendous impact over my own well-being. I am not a victim of illness. I can get better. I can get my life back. And from that, I’ve learned that I can make a lot of other dreams come true as well, by deciding to pursue them, asking for help, and believing.

What do you hope readers will get from your book?

CU: Hope, and the ability to find humor in tough times. A few good laughs. And some ideas about dealing gracefully with chronic illness. Most of all I hope they feel less alone and more empowered.

What’s next for you?

CU: I’ve been doing more and more performances for medical events as The Singing Patient, focusing on the funny medical songs I wrote when I was recovering from the stroke. Those shows are really rewarding. I feel like I can make a difference in that setting. I like to help people laugh at things they never thought they could find funny.

Thanks, Carla, for making me laugh out loud many times while reading your book. I’ll admit that I was a bit skeptical about a book about illness that relied mostly on humor. But it’s all good! And thanks for stopping by Getting Closer to Myself today.

Be sure to check out the shout out I gave to the book in my first ever vlog, and make sure you head over to Lupus and Humor and say “hi” to Carla (a.k.a The Singing Patient)! 

What To Expect When You’re Unsuspecting (Or The Things Your Doctor Doesn’t Tell You)

I started physical therapy for my gut last week. I was hoping to write a post about it once it was over, but that is at least six weeks away, and I really needed to vent about the experience.

I really didn’t know what to expect going in, but I assumed that you just lay on a table and someone palpated your stomach in such a way that it would get things moving. Not so. Are you ready for this? Brace yourselves…

Someone takes their finger and sticks it up your butt. And they manipulate the muscles that way…

(Read until the end. I promise, it gets better.)

I had no idea. And this is partly my fault. I did not ask my GI doc what physical therapy would entail. Mainly because I didn’t want to know the answer, because if I had known the answer, I probably would have refused. And because, at the time, anything, well, almost anything, sounded better than having to have surgery.

But shouldn’t someone have warned me? Shouldn’t I have had the opportunity to escape before I was knee deep in the situation? Given the tests that my GI doc has sent me for, I guess I shouldn’t be all that surprised, because they go from unpleasant to unpleasant-er. But don’t good doctors tell their patients what to expect from therapies and treatments? I’ve said it many times before: my GI doc is an uber-specialist, but the more time I spend under her care, the more I think it’s time to jump ship and find someone else.

Don’t get me wrong, the physical therapist was kind and gentle. But when someone’s got their finger up your ass – I’m sorry, but I don’t know a nicer way of saying it – at some point you just have to dissociate, like your body is there, but your mind is not. That’s the only way to get through it.

Modern medicine continues to disgust me with some of the antiquated methods it seems so hell bent on using. Really? In the 21st century, we really have no better way of dealing with a barely active colon other than to stick something up there, especially since I thought the goal was to get stuff out?

Some of you may be shocked by my openness here. But the truth is, there is no privacy anymore. No matter how depersonalized I felt things were in the past, this experience beats them all. I’m sharing with you all because I feel like I have a relationship and rapport with my readers. And because I’ve opened myself up in far more intimate ways to a total stranger.

I feel violated. Like a piece of meat that has to lay there and take it. I am just a specimen. My feelings and emotions don’t matter. I should remain mute. My boundaries have been crossed, and now there’s no way to go back.

As patients, are we allowed to have boundaries? Or being chronically ill, is it simply a fact of life that our boundaries will be tested?

When I went to my first rheumatologist appointment, and he had me get 27 tubes of blood drawn, that certainly tested my boundary of breaking out into a cold sweat for just one tube. In that moment, I had to grow up, and I had to accept the situation because I really had no choice. Had I resisted, I would have probably been considered non-compliant, and refusing something that was directly related to being diagnosed, would have seemed contradictory.

So should I just expect that from now until forever my boundaries will be tested and my threshold for what I am able and willing to handle will continually go up?

Have you ever found yourself in a compromising situation that you can’t get out of because your doctor put you there?

I so did NOT sign up for this!

And don’t worry, the irony of the fact that my physical therapist’s last name is BUTTS, isn’t lost on me. Only in my life would something like that happen. And I have to say, there needed to be some humor in this situation.

And a friendly warning: Don’t get caught unawares, because someone might just come and stick their finger up your ass. Yes, apparently there are people who spent years being educated on how to do this. And they enjoy it! Well, maybe they don’t enjoy it, but they don’t dislike it, either. There are no ifs, ands, or butts about it.

Okay, I’m going to stop now…

It Just...Kind Of...Happened...

“I finally found someone

That knocks me off my feet

I finally found the one

That makes me feel complete

It started over coffee

We started out as friends

It’s funny how from simple things

The best things begin”

- “I Finally Found Someone” by Bryan Adams and Barbara Streisand

My BF and I have been dating for a year today. So I guess this makes it our “one-year-dating-anniversary.”

I think that my previous relationships didn’t work because the other person was so set in their ways that they didn’t have room in their life for me. And that’s okay. I’m better for it. Because without those experiences, I wouldn’t have been willing to throw caution to the wind and go out with someone who I wouldn’t have normally gone out with.

What does that mean? A red-headed, Jewish doctor (as if that is the worst thing to be, right?). All of the qualities I didn’t want in a man. This is funny in and of itself, but it is all the more funny because my Bubbie – that’s a Jewish grandmother – didn’t want to marry a man name Manuel who was in the grocery business.

And guess what? She married a man named Manuel, who owned a grocery store, and they’ve been married for 64 years (I definitely like those odds!)! And I’m so glad that I went out on a limb, because I would have made a huge mistake if I hadn’t.

When I first started dating, I didn’t feel like I had the right to be too choosy because I am sick. I thought I had to take what I could get because, who, after all, wants a sick girl? This line of reasoning is incredibly negative and did not serve me well at all. I made a lot of mistakes along the way. But these mistakes made me realize that I deserved so much better than what I was getting.

Insert BF here…

I can’t really believe a year has gone by so fast. But to be honest, it has been one of the best years of my life. I never expected that going for coffee on a day that I wasn’t feeling well, and got out of my pajamas at 7:00 p.m. to go on the date, would turn into something that has lasted a year (and will hopefully last a lifetime).

I feel so lucky to have found someone who truly loves me for me, who has embraced my shortcomings, has celebrated the positive things with me, and has supported and encouraged me through the negative.

The reason I titled this post “It Just…Kind Of…Happened…” is because I can’t quite believe this is happening to me. I can’t believe that this amazing man is a part of my life. We survived the disclosure of illness, we survived past the third date, we survived meeting the parents, we survived a hospitalization, we survived losing a grandparent.

The point is, we’ve survived a lot of heavy stuff in a fairly short period of time, and we are still together, and I think, loving nearly every minute that we get to spend together.

He’s my B-F (boyfriend), my S-O (significant other), my P-I-C (partner in crime), and really, more than anything, he’s my everything.

Rich, I truly hope you know how much I love you and how lucky I am to have you in my life. Thank you for making every kiss feel like it’s the first. Thank you for making love song lyrics that I used to fantasize about become my reality. And thank you for never making me feel like a “sick girl,” even when I was in the hospital. You might be a red-headed, Jewish doctor, but you’re my red-headed, Jewish doctor. And I love, love, love, love you!

Forgive me for being so schmaltzy. But healthy or sick, there are some things you just have to celebrate.

Needles(s) To Say: My First Vlog

Hey everyone, this is my first vlog.  I really hope you like it.  Forgive the lack of makeup, and the fact that I apparently really like to roll my eyes. Please feel free to leave comments about whether you like me vlogging, and if so, what topics you would like me to talk about in the future.

Dear World, I know I’m Too Young For This, So Stop Telling Me So!

You know, rather than punch people in the face, as one of my previous posts suggested I want to do, I’ve decided to come up with a battle cry, and I think the title of this post is just about perfect.

It’s so annoying when I talk to people and they tell me I’m too young to be sick. I have lupus and rheumatoid arthritis, among other things. I’m 25 years old. Clearly I’m NOT too young for this.

Even a recent article in the Huffington Post backs up the fact that I am not too young for this. The article’s title says it all: “Preexisting Conditions Afflict Up To Half of Americans Under 65.”

Do people not think I am aware of my situation? I’m 25, but sometimes I feel (and possibly even behave) like I am 80 years old. I am aware that this is not the “normal” course of events that life should take. But it is my life.

I think people think they are being nice when they say this. I think in their heads it sounds like I’m so sorry this is happening to you. It shouldn’t be happening to you. You don’t deserve this. But to me, it sounds like I did something wrong. If I’m too young, but it’s still happening to me, then clearly I am the problem.

I don’t think these comments are made with malicious intent, but they are not made with much thought, either. Rather than saying nothing, people try to fill up empty space with comments that are equally empty. In this case, If you can’t say something nice, don’t say anything at all, doesn’t really work. But what about If you can’t think of anything intelligent to say, don’t say anything at all? Leave the empty space empty. Don’t say something just to fill air. Because these types of comments are worthless and sometimes even border on hurtful and offensive.

Better to let illness remain the elephant in the room than to try to come up with a comment that shows you clearly don’t understand the situation.

This statement is supposed to be some kind of consolation, but it’s not. In fact, it’s exactly the opposite. It doesn’t make me feel better about things; it makes me feel worse about them.

When people tell me I’m too young for this, I feel like saying: Wow, thanks for stating the obvious. And if this is true, THEN WHY THE HELL IS THIS HAPPENING TO ME?

This goes along with other unsolicited advice and opinions that healthy people give, and are so adept at giving. Or they ask questions like, “Are you really sure you actually have lupus?” As opposed to what, ass wipe, chronic constipation and pelvic dyssenergia? Oh wait, I have that, too! You lose. I’m just too awesome for words.

But seriously, my GI doc told me that I’m too young to be having the problems with my gut that I am. Well that’s just great. Even doctors fall into this trap. Sometimes they say the most unhelpful things.

So much of a chronically ill person’s time is spent dealing with healthy people and the stupid shit that they say and do. I think many of us try to educate those around us about how best to treat a sick person. This usually means treating us like we are people, and not acting weird or saying inappropriate things. This isn’t rocket science, people, it’s common sense.

Yes, I’m too young for this. So what are you going to do about it?

No more Miss Nice Girl.

Diagnosis Isn't Everything

The Mayo Clinic recently released the results of a study, suggesting that women have a 3.6% lifetime risk of developing rheumatoid arthritis and a 0.9% risk of developing lupus (http://www.eurekalert.org/pub_releases/2011-01/mc-mcd010511.php).

This reminds me while I’m not alone in this fight, I am unique.

The lifetime risk for breast cancer for women is 12.2% or about 1 in 8, although this risk is very small for my current age bracket (http://www.cancer.gov/cancertopics/factsheet/Detection/probability-breast-cancer).

In other words, we are being told virtually nothing about these other illnesses, and billions of dollars a year go to causes that most women think about, at least to some extent. So really, we are harboring silent killers. I thought arthritis was only a disease of old people, and I don’t recall ever really hearing of lupus until I was diagnosed with it. This really frustrates me. And this should not be the way things are. This, after all, is America.

On the other hand, with a lifetime risk of just 0.9%, shouldn’t I feel an obligation to question the diagnosis?

Recently, someone (not a medical professional) asked me:

Is it really lupus?

And I was forced to wonder:

Am I still supposed to be asking this question?

Because with this question comes others that I think are equally unproductive.

Did I cause this?

Maybe I did. Maybe my flu shot caused it. Or loving Splenda. Or drinking diet soda on occasion. Or eating fat free everything in undergrad because I was worried about the “freshman fifteen.”

If we all lived life like this, examining our every move under a microscope, we would all be miserable, fairly unproductive people.

I keep telling myself that I want to stop dwelling on the past and asking unproductive questions.

What if I had done this differently? What if I hadn’t dated this or that guy? What if I had indulged more or drank less soda?

The problem is that illnesses are complicated, and no one thing could have caused, or prevented, my illnesses. Just as there are a constellation of symptoms, there are a constellation of causes. To think that I can ever really figure out this puzzle is ludicrous. It’s nonsensical. So why bother trying?

Because healthy people say and do things that lead me to believe that I should have all the answers.

I’m sick of the self-blame. Of the feeling of inadequacy I feel for not being like my healthy counterparts. I still struggle with trying to balance other people’s opinions with the fact that grad school is not my top priority. Being as healthy as possible is. But healthy twenty- and thirty-something’s don’t get that.

I’ve been thinking back to what it took for me to get to where I am today. I am also working on a paper that I hope to submit for publication that looks at my illness experience over and against, and in relief of, the broader medical sociology literature. This has led me into an extended foray into my medical records, and has reminded me of how muddled the diagnostic process was.

Celiac’s disease. Systemic yeast infection.

Those are just a few of the illnesses that were in the running when I was in the process of trying to obtain an accurate diagnosis. And there were many, many more.

I can only imagine that those who have contested illnesses, or those that have illnesses that cannot be identified via medical testing, feel differently about diagnosis. I know that in many ways I am lucky that there is a label to put on me.

But diagnosis isn’t everything.

I was convinced that my life would be better as long as I had a diagnosis. But it turns out that, that isn’t always the case. I have lupus and rheumatoid arthritis, but I also have a constellation of other symptoms that don’t necessarily fit my diagnosis perfectly. I have illnesses that are hard enough to explain to myself, let alone other people.

A diagnosis provides some comfort sometimes, but it doesn’t do much for the reality that I am chronically ill with two incurable diseases and all that comes with them. A diagnosis provides an outline of medications, although some may work, and some may not.

I thought that a diagnosis would solve my problems, but it doesn’t. Sometimes I wish I didn’t know. Sometimes ignorance is bliss.

Tie Me In Knots; I Won't Come Undone

“Our lives begin to end the day we become silent about things that matter”

- Martin Luther King, Jr.

I have the right not to remain silent. Hence, this post will emit all of the things and feelings I have been dealing with over the past few months.

Thanksgiving was terrible. Christmas was non-existent, and I already feel like the first days of 2011 have flown by without me noticing.

I’ve felt a bit guilty about not sharing recent events with my readers, but I didn’t want to seem like a complainer. And I didn’t know how to talk about it all in a coherent way. So this post may only be semi-coherent.

The last few months have been filled with more calls from doctors, doctor’s appointments, and tests than I care to remember.

I had more disagreements over appointments with the GI people, I had to contact patient relations again, and I was finally told by someone in GI that I wasn’t being treated properly and that the way I was being treated goes against protocol.

In between the other chaos, I got separate calls from my rheum’s and GI’s office telling me that separate labs had come back abnormal. I was taken off Methotrexate. I am back on it now, on a lower dose. That which does not kill you, right?

I also had a defecography and colonic transit test. While it’s amazing how comfortable you can become talking about the inner and outer workings of your gut, I’ll let you discover exactly what these tests entail on your own, if you so desire. I will say, however, that the colonic transit test is a weeklong commitment. And what a commitment it was.

I don’t know how people that have mainly GI symptoms associated with their illness(es) do it. It is exhausting, embarrassing, and disabling, not knowing how your body is going to react, and not being able to trust that it will work properly.

On the one hand, my life has been overwrought with health stuff. On the other hand, I have found myself on the other side of things.

I won’t say too much about the non-health stuff because it is not really mine to tell. But it has been like watching a speeding train derail, and not having any way to stop it. Now I know what it feels like to be in the position of those around me who have had to deal with my illnesses and have no way to really help me.

I’ve also learned that you never really know what is going on in someone else’s life or home unless they tell you about it. You can think that these are the happiest people in the world, and their lives could be falling down around them.

How much can one person take?

I wish there wasn't a before and after. I wish there was just life, and a life that wasn't always spiting and thumbing its nose at me

I have a feeling that this might be one of those posts that I look back to and shake my head at, wondering how I really could have been feeling this low. But right now, I am, and the only way I can really think to help myself is to write the hell out of it.

Honestly, I’m pretty convinced that these people don’t know their head from their butt, and given that they are GI people, that definitely isn’t a good thing.

And does it make sense to anybody that my two and a half day hospitalization was billed to my insurance as outpatient care, which meant that I had to pay for part of it?

I am also sick of living in a country where people who are down on there luck get no compassion whatsoever.

I didn’t really make resolutions this year. Mainly because what I would really like to do is go into bed, put the covers over my head, and not get out until all of this crap is over.

I am exhausted…already…physically and emotionally.

I ran into my GI doc at the hospital, on the way to my volunteer post, and she had no clue who I was. There was zero recognition. I have seen this woman many, many times. My rheum has recognized me “on the street”. This really frustrates me. I want to trust this doctor and what she has to say, but how can I? Her inability to recognize me makes feel worthless and invisible. It makes me realize that in the medical system, I am just a patient, a number. My personhood is in question. Because I am sick.

I’m sick of being the person that gets treated like crap, but takes it with a nod and a smile. That acts like it doesn’t bother me. Because it does. And now I want to rip everyone’s heads off at any chance I get. But I don’t. And I won’t.

I’m trying to get things under control. In the near future, I’ll be starting physical therapy for my colon. Not sure what this will entail, but needing it to work so that I can avoid surgery. My doc thinks that this is not related to my rheumatologic issues. How can it not be? I’m still searching for more concrete answers, and hoping they come my way very soon.

And I’m doing what I can to support those around me who are dealing with difficult things.

So that’s where I stand. And that’s the key thing. Despite being totally overwhelmed by things, I am still standing. I may be a bit worse for the wear, but I’m doing the best I can.

2010: My Year, In Books (And Other Remembrances)

“Five hundred twenty five thousand

six hundred minutes
Five hundred twenty five thousand

moments so dear

Five hundred twenty five thousand

six hundred minutes

How do you measure, measure a year”

First, I’ll start with the other remembrances, and then I will get to the books.

2010 was a year for many things:

The year of Methotrexate:

I chronicled my on again, off again love affair with the drug, in the posts:

- “The Sacrifices We Make To The Medication Gods”

- “A ‘Sick’ Day Or A ‘Typical’ Day?”

- “Running Out”

The year of Repeat Cellulitis:

- “Patient Knows Best”

The year of the Guest Blogger:

I was happy to host Sara Gorman, author of “Despite Lupus”, and Toni Bernhard, author of “How To Be Sick”:

- “Guest Blogger: Sara Gorman”

- “Guest Blogger: Toni Bernhard”

The year of the death of Support Groups:

Virtual support seems to be the beacon, as in-person support groups fizzled out:

- “Hello, Lupie!”

- “Two Years And Counting: The Insight That Comes From Illness”

- “Does Misery Really Love Company?”

The year of annoying and incompetent hospital staff and other “professionals”, and other mishaps:

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

- “Same Stuff, Different Day: Unfortunate Lessons In Disclosure”

- “Patient Relations To The Rescue! (Definitely Something To Be Thankful For)”

The year of Volunteerism:

- “Give And Let Give”

The year of My Second Hospitalization:

- “Worse Date Night Ever (And It’s All My Fault)”

And most importantly…

The year of the Boyfriend, the year of the boyfriend, and oh yeah, did I mention, the year of the boyfriend?

We’ve been dating for nearly a year now, and I couldn’t be happier! I’ve blogged a lot where he’s concerned from disclosing to living to talking about babies and everything in between:

- “Breaking My Own Rules: The Doctor Is In The House”

- “When Your Body Calls, Who Responds?”

- ‘Le Talk’

- ‘I Love You, Don’t Touch Me’

He’s briefly mentioned in passing in many posts, so I’ll leave it to you to find them all.

*****

And now on to the books…

One of my goals for 2010 was to either read all of the books on my shelves that I haven’t read, or get rid of them. Maybe that sounds stupid. But part of my more abstract goals was to get rid of excess baggage, to get rid of the things that are holding me back and/or down.

I did not end up reading all the books on my shelf, but I did set a goal to read at least 50 books, and I surpassed that.

This list includes only books that I read in the entirety. This does not include the countless articles and book chapters that I read for my research. 

Reading all these books made me realize that I need to get on writing my own, because some of the stuff out there is just plain crap.

Maybe 2011 will be the year that I write a book!

Anyway, I think the books a person reads says a lot about them. And since I do truly spend so much of my time reading, here goes. You will notice that I do tend to get on author kicks. Hopefully from my list, you'll find something worth reading in the year to come:

1. “Lip Service” by Susan Mallery (F)

2. “Straight From the Hip” by Susan Mallery (F)

3. “Hot on her Heels” by Susan Mallery (F)

4. “The Pursuit of Perfection” by Sheila M. Rothman and David J. Rothman (NF)**

5. “Mistaken Identity” by Don & Susie Van Ryn and Newell, Colleen, and Whitney Cerak with Mark Tabb (NF)

6. “As Nature Made Him” by John Colapinto (NF)

7. “Dear John” by Nicholas Sparks (F)

8. “90 Minutes in Heaven” by Don Piper (NF)

9. “Despite Lupus” by Sara Gorman (NF)*

10. “How to Write a Lot” by Paul Silvia (NF)**

11. “The Art of Being a Healing Presence” by James E. Miller and Susan C. Cutshall (NF)*

12. “Time Management from the Inside Out” by Julie Morgenstern (NF)

13. “The Five People You Meet In Heaven” by Mitch Albom (F)

14. “For One More Day” by Mitch Albom (F)

15. “Have a Little Faith” by Mitch Albom (NF)

16. “Cancer Is a Bitch” by Gail Konop Baker (NF)*

17. “Messenger” by Jeni Stepanek (NF)*

18. “The 9th Judgment” by James Patterson (F)

19. “My Stroke of Insight” by Jill Bolte Taylor (NF)*

20. “Better” by Atul Gawande (NF)*

21. “The Immortal Life of Henrietta Lacks” by Rebecca Skloot (NF)* **

22. “Lift” by Kelly Corrigan (NF)

23. “The Short Book” by Zachary Kanin (NF)**

24. “In An Instant” by Lee & Bob Woodruff (NF)*

25. “The Middle Place” by Kelly Corrigan (NF)*

26. “Hornet Flight” by Ken Follett (F)

27. “Complications” by Atul Gawande (NF)*

28. “Private” by James Patterson (F)

29. “The Council of Dads” by Bruce Feiler (NF)*

30. “Short” by John Schwartz (NF)**

31. “Lupus Q & A” by Robert G. Lahita and Robert H. Phillips (NF)*

32. “As I Live and Breathe” by Jamie Weisman (NF)*

33. “The Woods” by Harlan Coben (F)

34. “The Postcard Killers” by James Patterson and Liza Marklund (F)

35. “The Innocent” by Harlan Coben (F)

36. “Julie's Story, My Life With Lupus” by Julie Miller (NF)*

37. “My (So-Called) Normal Life” by Erin Zammett (NF)*

38. “Love Story” by Erich Segal (F)

39. “The Biopolitics of Breast Cancer” by Maren Klawiter (NF)**

40. “Train Go Sorry” by Leah Hager Cohen (NF)**

41. “Deaf in America” by Carol Padden and Tom Humphries (NF)**

42. “Impure Science” by Steven Epstein (NF)**

43. ‘So What Are You Going To Do With That?’ by Susan Basalla and Maggie Debelius (NF)**

44. “Courtney’s Legacy” by George Cantor (NF; link not available)

45. “Better Than Well” by Carl Elliott (NF)**

46. “How to be Sick” by Toni Bernhard (NF)*

47. “Disarmed” by Kristin A. Goss (NF)**

48. “Flammable” by Javier Auyero and Débora Alexjandra Swistun (NF)**

49. “The Case Against Perfection” by Michael J. Sandel (NF)**

50. “Promise Me” by Nancy G. Brinker (NF)*

51. “Complete Your Dissertation or Thesis in Two Semesters or Less” by Evelyn Hunt Ogden (NF)**

52. “Normal At Any Cost” by Susan Cohen and Christine Cosgrove (NF)**

53. “Unstoppable in Stilettos” by Lauren Ruotolo (NF)

54. “Footprints of Courage” by Jan Jenkins (NF)

55. “Hoda” by Hoda Kotb (NF)*

56. “Someone Like You” by Susan Mallery (F)

57. “Falling for Gracie” by Susan Mallery (F)

58. “Into Thin Air” by Jon Krakauer (NF)

(F) – Fiction
(NF) – Non-fiction

* Books specifically of interest to chronically ill readers
** Academic books/books for my research

*****

Wishing all of my readers a very Happy New Year!

Be sure to check out my new blog/business venture: Creating Everlasting Memories (And More!).

And, of course, look for new posts in 2011!