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.