Wednesday, June 8, 2011

Patients For A Moment: Down But Not Out Edition


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

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

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

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

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

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

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

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

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

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

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

Monday, June 6, 2011

Guest Blogger: My Sister Molly


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

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

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

How would you describe our relationship?

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

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

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

What do you know/understand about my illnesses?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tuesday, May 31, 2011

“Patients For A Moment” Is Here June 8th

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

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

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

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

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

If you would like to submit a post, e-mail the following to gettingclosertomyself@gmail.com:

Your name (as it should appear)
Your blog’s name
Your post’s title
Your post’s URL

And make sure you put “PFAM” in the subject line.

All submissions wishing to be considered should be received by 11:59 p.m. Sunday, June 5th.

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

Sunday, May 29, 2011

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

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

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

- “Fuckin’ Perfect,” Pink

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

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

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

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

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

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

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

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

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

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

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

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

I’m a walking liability, literally and figuratively.

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

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

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

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

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

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

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

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

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

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

I am not a martyr.

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

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

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

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

Through my tears, I am trying to smile…

Sunday, May 22, 2011

Traveling (Alone) With Lupus And Rheumatoid Arthritis

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

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

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

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

I’ve got nothing going on, right?

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

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

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

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

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

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

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

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

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

Wednesday, May 11, 2011

Down Like A House of Cards?

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

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

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

- “Firework,” Katy Perry

Things are going okay.

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

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

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

And I had an appointment with my rheum today.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Monday, May 2, 2011

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I’m laughing so hard I can’t go on…

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.

Thursday, March 17, 2011

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.

Monday, March 14, 2011

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

Thursday, March 10, 2011

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.)

Monday, March 7, 2011

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!

Thursday, March 3, 2011

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.

Sunday, February 20, 2011

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.

Monday, February 14, 2011

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.   

Monday, February 7, 2011

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)!