Thursday, May 29, 2008

How Do We Know When We're Ready To Change?

This, I think, is a very good question and one that really resonates with me right now.

I know that I am going to have to learn to cut myself some slack – that what used to be my 95% is now my 110%.

I was always a go, go, go, and never stop type of person.

But I can’t be that way anymore. Or I’ll crash and burn… fast.

I don’t have any specific orders from my doctors about what I can and can’t do, but I guess if it gets to that point, I’m really in trouble. Well, if you ask me, I’ll always keep going until I can’t anymore. But with the way my life is now, that is not a realistic plan.

So I can think all of this in my head and know that I need to do it. But how do I? How do I know when I’m ready to change? I mean, me calling the shots, not my body forcing me to slow down and take a rest, not other people telling me what to do - me.

But how do you train yourself to let go? To let go of stress, frustration, hurt, anger, the need to be everywhere and do everything. How do you let go of being yourself and yet keeping things the way they are?

Clearly I am still losing this part of the game. I was too tired to workout Tuesday night, but I forced myself to do it last night. By the end of the workout, and still this morning, my hips feel like I am 80 years old.

Needless to say, I’m not too pleased with this. It makes me wonder how smart it was to start a 40-hour a week job a month after steroid infusions. I fear that they may be beginning to wear off…

That said, something in my life needs to change and I need to be the one to change it. But I’m not sure what it is yet.

3mg And Counting...

As of today, I’m down to 3mg of Prednisone for the next two weeks.

Some of you make think this is stupid, but this is really big for me. When all is said and done, I’ll have been on Prednisone for 7 months. And I’ve dealt with all of the lovely side effects that come along with this “wonder” drug.

It has definitely made me feel better in some ways, but as I’ve learned in this game, there are always trade-offs.

When I first started taking Prednisone, I dealt with being hungry all the time, only being able to think about what my next meal was going to be, and the ever iconic “moon face.” I’ve also had and continue to have very bad and painful breakouts. I don’t know what to call them other than alien life forms that take root wherever they plant themselves.

A small price to pay for feeling better – yes. But a price, nonetheless…

Wednesday, May 28, 2008

Black Bean And Brown Rice Casserole

I made this last week, but forgot to post the picture.

Zucchini Bran Muffins

Yes, they are heart shaped. They are kitschy-cute. They are healthy. Need I say more?

How Big Do Foreign Invaders Have To Be To Cause A Reaction From The Immune System?

I mean, are we talking microscopic here or bigger? Or does it all depend on the type of bacteria?

Why do I ask?

Well, ever since my “diagnosis,” I’ve developed a pathological fear that I am going to get sick. If someone coughs, I am going to get a cold. If someone throws up, I am going to get the flu. That is, if they are sick when they are around me. I don’t just hear that someone is sick and think I am going to get sick.

There are several reasons for this:
1) All of this started, or domino-ed, from a few innocent Strep throat infections.
2) My immune system is already compromised from my illness.
3) My immunosuppressive medications further compromise my already compromised immune system.

What’s a girl to do? Stay at home and become a hermit? Where a mask? Hope for the best?

Who's The Villian In Your Story?

Yes, I’ve been watching too much “Grey’s Anatomy.” But sometimes these candy pop shows can be surprisingly insightful.

As I’ve been talking about a lot lately, I’m beginning to realize that it’s important to filter the people who come through your life. They’re not all going to make the “best friend” list. Then again, they might not make any list at all. And it doesn’t make you or me a horrible person for making that decision.

You know, there was a time when I was really picky about my friends, but in a different way than I am now. Now, for me, it’s about the people who I know I can count on. I hope those out there whom I call my friends know that they can always count on me.

Obviously, whether to include/keep someone in your life isn’t a snap decision that you make on a whim. It’s a decision that comes after a lot of thought and soul searching.

I’ve been wondering whether it’s easier to remember those who are the antagonists in our lives or the protagonists. As I said before, sometimes the simplest gestures mean the most. Then again, I feel like a lot of times I come back to the hurt that others have caused (and some continue to do).

But I guess as with anything in life, we have to take the good with the bad, and that includes people, too!

Work Day 2

Well, I’m tired, which is no surprise, but I’m alive, so that’s a good thing.

I never realized how exhausting it is to put in 8-hour days before.

Today was better than yesterday in terms of tiredness, but when I got home, I had no power. Now, I’m trying to learn to let things go and not stress about the little things, but the lack of power sort of put a damper on the things on my to-do list that I didn’t get done yesterday and had planned to get done today.

So, what’s a girl to do? Make a dozen and a half zucchini muffins, of course! Isn’t that what any girl with a gas stove and some time on her hands would do?

Tuesday, May 27, 2008

New Job + Exhaustion = Insurmountable Worry

I started my research internship today. It went fine, but, needless to say, I’m completely exhausted. I haven’t done this much activity in a long time. By the time I got home, I felt like my body was going to shatter into a million pieces.

I’ve realized that I can work through the pain. It’s the exhausti0n that is really debilitating. Well, actually, whether I can handle the pain vacillates on what seems like a daily basis. Today it was the fatigue that was really the problem.

And my advisor wants me to take a class. The class would be during work time, which is fine. But it meets everyday and I’m really worried about getting the work done, especially if I come home exhausted from work every night.

This brings me to the old question – who do I tell what? Do I admit that I’m worried about taking a class and explain everything that has been going on or do I attempt it and hope for the best?

It seems that every time I attempt to push myself to the limits (or what used to be my 95%), my body pushes back and reminds me that I’m no longer in control.

Career enrichment-wise, the class would be helpful, but body-wise, probably not so good. Today I felt the most stressed that I have in a long time and this was a relatively easy day.

And also, I’m trying to figure out when to pick up my prescriptions. It’s a matter of coordinating my work schedule and walking/bus/transportation, along with making sure that I actually get my medication before it runs out.

Not a big deal, but sort of.

I guess it’s not as simple as picking up and going. I can have the most ironclad plans, but that doesn’t mean that my pain or fatigue isn’t going to interfere with those plans.

Early this morning I was intending to stop by the grocery store to pick something up on my way home, but in the end, I was far too exhausted to make the effort.

And all I can keeping thinking is that every time I fail myself by not following through on something, even as small as going to the grocery store, inevitably, at some point, I will end up failing someone other than myself. And lately I’ve come accustomed to failing myself, but failing others is NOT who I am.

Thursday, May 22, 2008

New Title, Same Blog

I had contemplated using this title originally and now it’s seeming more appropriate than ever. While there was some significance to Jumbo Shrimp, I think this title holds more meaning. It doesn't seem quite as frivolous...

Wednesday, May 21, 2008

Are Our Doctors Also Our Friends?

I haven’t said this in awhile, but today was a bad day – physically and emotionally. I’m in the most pain I’ve been in, in awhile, and have a headache that I can’t seem to shake.

I got up this morning feeling slightly off and my mood worsened throughout the day. I’m feeling quite disillusioned right now. Over the past year, I’ve spent more time in doctor’s offices, being poked and prodded, etc., than I have anywhere else.

And I don’t feel much connection to anyone right now, including, maybe even especially, my doctors.

I’m tempted to throw my ever-expanding binder of medical *stuff* out the window and say to heck with it.

What if I decided to forego the meds and see what happens? I know, just as I was starting to feel better. This wouldn’t be my most brilliant idea ever. And it’s not going to happen. That would be just plain dumb of me, and probably quite dangerous.

But, you know, I am a pretty organized person. I like routine. But this monotony of medication and appointments is becoming a real drag. Especially when I have days like this when I just assume lay on the couch all day and do nothing.

But I couldn’t do that today because I had an appointment with Doctor E.

I guess, aside from still needing to learn how to deal with my doctors, I also need to learn how to deal with the flares. I could tell it was happening yesterday, but I thought if I ignored it, it would go away. No such luck.

So, when you have a chronic illness and are going to have a long-term relationship with yours doctors, shouldn’t they come to feel like friends? I mean, the doctor-patient relationship is certainly a hard thing to bridge, but doesn’t there have to be some kind of deeper connection than my patient number and the diagnostic code for my disease?

People Who Need People

Here’s a for instance:

I’ve had several friends get engaged or married over the past year.

If I told any of them that I couldn’t share their joy because I hadn’t had the experience myself, I would be considered a pretty crappy friend.

I hate to beat a dead horse, but my illness is part of my life. It’s part of who I am now.

Maybe one day I’ll be able to say:

I have lupus and rheumatoid arthritis. Ha, ha. It doesn’t control my life.

Whether it’s too new and I haven’t fully dealt with the meaning of it yet, or this is the way I am always going to feel, I’m not ready to say that. Despite feeling better, some part of everyday has to do with not being completely well.

Maybe it’s the fact that I take medication 3 times a day or that I have to get up extra early to take the first dose. My entire routine has changed. It’s hard to act like things are like they used to be pre-illness.

I get the fact that all of this may be hard for others to understand. It’s hard for me to understand, too. But in this case, ignorance isn’t bliss, for me or those around me. And a lack of empathy is, in my opinion, inexcusable.

I’m learning to purge from my life the things that aren’t useful and only seek to hold me back or put me down, and this includes people, as well. As hard as that is to say and do, I’ve really learned a lot about myself and others over the past several months.

One-sided relationships don’t work for me anymore. I think there was a time in my life when I was so eager for acceptance, that I really let people take advantage of me.

Well, no more.

Anyone that knows me at all knows that I’m not the type of person that likes to ask for help. And I wouldn’t ask unless I truly needed it. They also know that I’m the type of person who reciprocates, sometimes above and beyond what was done for me.

So, while the people around me have to understand that some aspects of my life have changed, in other ways, I still am and always will be, the same person I was before.

Monday, May 19, 2008

Toxoplasmosis, Anyone?

In one of the many books I’ve read on lupus, it suggested that lupus patients are more susceptible to toxoplasmosis (a disease mainly contracted through cat litter/feces).

I wonder if anyone knows more about this. Is the susceptibility increased because of an already compromised immune system or is there something inherent in the bacteria, itself, that increases susceptibility?

I’ve been considering getting a cat, but wasn’t sure if it was a good idea because of my various health issues. After reading the warning from the book, I am definitely not sure if it is a good idea, but I would like to find a better explanation of why this occurs.

Premature Birth and Autoimmune Diseases

I was born severely premature (almost 3 months early).

And I’m wondering if anyone knows if there is any connection between premature birth and subsequent diagnosis of autoimmune diseases.

I know I’ve suggested before that I refuse to look back on earlier parts of my life and question them.

However, until this point in my life, I’ve been relatively lucky health wise for a severely premature baby born in 1985.

So I find myself having to wonder if there is any correlation between my premature birth and my recent diagnosis with multiple connective tissue/autoimmune diseases.

I’m not sure what I’ll do with information about this, but as I’ve suggested before, I’m trying to put the pieces of this puzzle together and make some sense out of all this for myself.

I've Spiced Things Up!

Let me know what you think of the new look!

(I'm still discovering all of the crazy cool things I can do with this thing!)


Eggplant is the word of the day.

So, I’ve been trying to make eggplant myself, as when I first tried to cook it several months ago, I failed miserably.

But last night, with my 5 pound eggplant in toe – success!

I cut it into rounds, salted it, let it sit, rinsed it, cubed it, and then sautéed it with garlic-flavored olive oil.

While this was quite palatable, I got to thinking:

What variation of something that I already know how to make could I do using eggplant?

I decided – eggplant patties – like tuna or salmon patties.

I took a few of the prepared rounds, cubed them, put them in the blender, and let them go until they were in fine shreds. Then I mixed in (not in the blender, in a bowl) egg white and breadcrumbs. Then I put them in a pan. And the rest is history.

They were awesome. What a stroke of culinary genius, if I do say so myself.

Do You Like Pina Coladas?

As is evidenced by my medication regimen (see previous post), I can’t drink alcohol. This is fine as I was never a big drinker, anyway. But, lately I’ve become quite addicted to Starbuck’s frappucino’s *the light version*.

I mean, come on, we all have our vices, right? And since I had a lot of ups and downs in April, it was a good way to get some calories in me, without having to force myself to eat when I wasn’t feeling up to it.

However, despite my love of Starbuck’s, I think I’ve found my own creation that is going to fit the bill:

- ½ cup Silk light chocolate soy milk
- ½ cup ice

Blend soy milk and ice in a blender until frothy. Enjoy! *

You know, it’s the little things in life. Especially because now I can make something at home that might just make me feel a little better, especially on really bad days. And there is definitely something to be said for being able to make the bad days a little better!

* The whip cream is fat free and the black part at the bottom of the picture is actually the glass!

The Ultimate Breakfast Burrito

Okay, so personally, I couldn’t stomach this for breakfast, but those who are so inclined can feel free to enjoy. I prefer it for lunch, instead.

Monday, Monday

I hate Mondays. Always have, always will.

Especially today, when I learned that prednisone and the garbage disposal don’t mix.

Here’s the story, which just proves that there was no way I was going to win this fight.

So, as I went to take my medication, 2 of my prednisone fell. One I found, even though it fell onto a white counter. The other I couldn’t find, but I knew that it bounced off of (or into) the back of my coffee maker.

I decided to shake out the coffee maker over the sink, thinking it would be easier to see if the pill fell out onto a silver surface than a white one.

Well, I saw it, all right. I saw it pop out of the back of the coffee maker and proceed to roll directly into the garbage disposal.

I was able to see the pill in the garbage disposal, attempted to get it with my hand, then a spoon, and then, two spoons, which, rather than rescuing the pill, proceeded to crush it into oblivion.
Then, just for good measure, I turned on the garbage disposal, to make sure that I finished the job.

Unfortunately for me, since I’m tapering right now, I only got 1 prescription (with no refills) for the exact amount of 1mg pills I would need.

Assuming I don’t manage to destroy anymore of them, it should be okay, though.

The thing is, I’ve always thought that these spills were too small, anyway. I’ve decided that I’m a big fan of – colorful pills, capsules, and pills that aren’t flat and round – pills that are easy to see and get your grip on, just in case you happen to land one in the garbage disposal on a Monday morning.

I just really needed to get that off my chest!

Happy Monday!

Sunday, May 18, 2008

Doctor Refresher

Since it’s hard enough for me to keep track of how I refer to all of my doctors, I figured I would provide a concise list for those who are wondering and don’t feel like reviewing my first three posts:

Doctor A – Original doctor from home (unlikely will see again)*
Doctor B – First primary care doctor (unlikely will see again)*
Doctor C – Rheumatologist (current)
Doctor D – Gastroenterologist (current)
Doctor E – ENT (current)
Doctor F – Second primary care doctor (current)

That’s enough for now, don’t you think (doctors, I mean)?

* For more information on these, see first few posts for explanations.

My Life

I remember a time, not so long ago, sitting in Doctor C’s office, begging for help; telling Doctor C that I didn’t know how much more I could take of this; that I had been physically sick for a year and had come to realize that I had been having symptoms for several years.

I think Doctor C realized that it was time to put up or shut up, not as a threat, but as a personal plea from me.

A lot of people (not those with any of the illnesses I have or any illnesses at all, for that matter) have told me that I could live a relatively normal life with what I have.

Looking back, they may be sort of right.

But do they know what it’s like to go to bed and wakeup in pain? To start most days by smacking yourself on the forehead and saying in your head:

Oh my goodness. This is the rest of my life.

In some ways, that’s the way life is. It is full of ups and downs, even if you don’t have some stupid illness to worry about. On the other hand, it’s different not to have control of situations and not having control over your body.

I mean, I’m grateful for finally feeling a lot better than I did before, but that could change at any moment, without any warning, and there’s very little I can do about it. That’s the scary part.

"I Still Haven't Found What I'm Looking For"

All of this talk about mountains (proverbial or otherwise) leads me to a song – another one of my personal favorites…

“I Still Haven’t Found What I’m Looking For” by U2:

“I have climbed the highest mountains
I have run through the fields
Only to be with you
Only to be with you.I

I have run, I have crawled
I have scaled these city walls
These city walls
Only to be with you.

But I still haven't found
What I'm looking for.
But I still haven't found
What I'm looking for.

I have kissed honey lips
Felt the healing in her finger tips
It burned like fire
(I was) burning inside her.

I have spoke with the tongue of angels
I have held the hand of a devil
It was warm in the night
I was cold as a stone.

But I still haven't found
What I'm looking for.
But I still haven't found
What I'm looking for.

I believe in the Kingdom Come
Then all the colours will bleed into into one
Bleed into one.
But yes, I'm still running.

You broke the bonds
And you loosed the chains
Carried the cross of my shame
Oh my shame, you know I believe it.

But I still haven't found
What I'm looking for.
But I still haven't found
What I'm looking for.

But I still haven't found
What I'm looking for.
But I still haven't found
What I'm looking for.”

From the album, “The Joshua Tree

"Beyond Measure"

For those who don’t know, in my academic life, I study issues related to height. I read this book last year about a woman who climbs Mt. Everest.

After reading the book I thought, why not? That would be a good goal to have.

To leave solid ground and travel among the clouds.

But now I’m forced to wonder…

Haven’t I climbed enough proverbial mountains?

Do I really need to prove I can to anyone but myself?
(Frankel, Ellen. Beyond Measure. Nashville: Pearlsong Press, 2006)

Why Does Hurt, Hurt?

I’ve been thinking a lot lately about why people hurt us, why we hurt others, and why some hurts go away and others do not.

I’ve come to realize that the hurts that go away are those that are acknowledged by the doer. Those that don’t go away, are the ones that the doer does not acknowledge, or pretends doesn’t exist at all.

And I guess it’s our job to either move on despite the hurt, or let the hurt envelope us.

We hold grudges. But is it really because we are so hurt that we can’t forgive or because it’s easier to stay mad? Is it because holding a grudge allows us to have power over the other person?

I wonder all of this for several reasons:
1) I’ve been known to hold a grudge or two and am currently holding several.
2) I mentioned in an earlier post that I sought to make amends with several people from my past, but to no avail. Did never responding to me make them feel better about themselves?
3) Is any of this hurting and being hurt worth it? Life is so short. Shouldn’t we spend the time we have making the most of it?

I received a card in the mail today from a family friend who I haven’t talked to in awhile, not because I was holding a grudge or was feeling hurt by that person, but because repeated attempts on both sides have failed to make contact.

The card made me cry.

It was filled with some of the nicest, kindest, most thoughtful words I have heard in a long time.

And it’s those kinds of moments that really make all of the hurt bearable. The moments of the opposite, that truly shows the kindness and compassion of humanity.

I’ve realized over the past several months that I am more resilient than I ever anticipated. I can survive the hurt. It might take months, even years, but I can overcome the pain. What I cannot overcome is the ignorance of the guilty party.

It’s funny because several weeks ago, a friend of mine who I hadn’t talked to in awhile (that’s just how our friendship works) called to see how I was doing.

And you know what?

This call touched me more than most things recently have.

And I wondered why such a simple gesture had such a profound impact. It’s because this person, like the card sender, are true friends. No matter how big or small the gesture, they are always there. And they would never do anything cruel or malicious, intentionally or otherwise, to compromise what we have.

As the card tagline reads:

“Remember, I’m here to share the rainy times, too!”

So even when we are hurt and holding grudges, there will always be people there to support us. As I’ve suggested, there are those that will run as far away as possible at the first sign of trouble, but there are others, who, no matter what, will always be there to share both our pleasure and our pain.

A New Leaf

There was a time (October through April) when nothing seemed to being going right. Everything was going wrong and my life seemed to be spinning out of control (at least, out of my control).

There was even a point when things got worse, when I didn’t even know there was a worse possible.

Things have calmed down considerably and it appears that my life may be returning to (somewhat) normalcy.

I’d be fooling myself if I thought that my life was ever going to be completely normal again – there will always be the worry of things turning downward again – but for now, I think things are as normal as they are ever going to be.

And I definitely think that is something to celebrate, or at the very least, acknowledge.

Friends Are Like Bras

Bandeau/Strapless Bra – This (friend/bra) provides no support at all. It’s only there to pretend that it does.

Lace – Some (friends/bras) are there to look pretty, but they don’t add much support.

Miracle/Wonder Bra – This (friend/bra) makes you look and feel bigger (and better) than you really are. Some may call them supportive, others may call them phony.

Racer Back/Sports Bra – Fun and supportive, and versatile enough for work or play.

Super Supportive – This (friend/bra) may not be the smartest or the prettiest, but is there to provide support whenever you need it.

T-shirt Bra – This (friend/bra) provides your everyday, run of the mill support.

Underwire – While this (friend/bra) can be incredibly supportive, it can also be pretty darn unbearable (uncomfortable), as well.

What’s the moral of this story?

Friends, like bras, are all about support (or lack thereof)!

Thursday, May 15, 2008

4mg Of Prednisone And Counting Down...

As of today, I’m down to 4mg of Prednisone for the next two weeks!


Too Much Reality

Tonight when I was half paying attention to “ER,” I heard the following:

Is she on any meds?

Prednisone and plaquenil
*. She has Lupus.

(And of course the woman ended up dying.)

Honestly, if I wanted to watch reality TV, I would. Since when is “ER” considered reality TV?

When they started playing my reality.

I had considered doing either the Lupus or Arthritis walks, but realized that it would be too much, too soon. It would mean that I am accepting the hand I have been dealt.

And eventually, I will have to.

But right now, it is too much, too soon. If “ER” mentioning Lupus makes my skin crawl and my heart beat faster, how would I feel entering myself as one of them?

These wounds are still too fresh and new…

Acceptance takes time.

* What I’ve referred to as Hydroxychloroquine. They are the same thing.


I can’t drink pop.

It makes my bones hurt.

I don’t drink pop often, but sometimes I get a craving for it.

But I can’t drink it…

Or I can, but then my bones ache…

Wednesday, May 14, 2008

Oprah Says

You know, I don’t want to give her more credit than she deserves, but sometimes, Oprah just gets it right. She hits the nail on the head.

I was reading the current (June 2008) issue of the magazine, and in her “What I Know For Sure” section, she had this to say:

“It is indeed a miracle when you realize the fullness of who you are. You’re not your body, and for sure you’re not your body image. That’s a free at last kind of recognition. No more wasted time” (244).

I think she’s right. And it makes me realize that I was hung up on being short and then I get sick and I got hung up on that, and then the medication made me gain weight (not a lot), but then I became hung up on that.

There will always be something to fixate on, something to want to perfect, if we let it.

But what if we all were to step back for a moment and rather than pin-point all that we feel is wrong with us, look at all that is right. I think many times we construe this as being a selfish, self-centered pursuit, making us seem too into or full of ourselves.

What if the key to true happiness relies on accepting ourselves for who we are?

I’ve said a lot recently that this whole experience of illness and disease has, to some extent, made me accept my own limitations.

All of us are good at some things and bad at others.

But we are who we are, and for better or worse, there is something inherently good in that.

So, Here's A Question...

During my first year of graduate school, I did a fairly good job of concealing what was going on with my health. I pretty much told people on a need-to-know basis. And luckily, except for the very end of first semester, things never got quite bad enough to alert the masses.

However, now I am sort of in a quandary. While I am feeling much better than I was before, I am quite easily tired. When I put in full days or several full days in a row, it definitely catches up with me. And lately, it takes me forever to get started. And I do still have other symptoms, even though they aren’t as bad as they used to be.

So, I start an internship in a couple of weeks and I wonder what, if any, information should be disclosed to the program director and my mentor about my illness.

You know, it all goes back to the fact that if my disease was wrapped up in one nice little package, it would be easy to tell people, “Okay, I have this. And therefore, I might act or feel this way.” However, things still aren’t quite as simple as that and truth be told, may never be.

Similarly, I’m going to start GSIing (teaching) in the fall. And I wonder what information I need to provide to the professor I’ll be teaching for. So much of this is based on what ifs. What if I flare up again? What if I get sick from my medication? What if I can’t plan doctor’s appointments around class?

It’s hard to know what to tell people and what not to, especially given how insensitive some people have been about my situation thus far.

And I guess I also don’t want to be one of those people who is accused to using their illness to their advantage. Although I think that thus far, I’ve done just the opposite and have worked through it, probably to the point of doing myself more harm than good. And I guess, ultimately, there will always be those people who simply don’t understand and never will, and say negative things about me, just to make themselves feel better.

Tuesday, May 13, 2008

Rehabilitation Institute of Chicago Pain Boot Camp

So, I don't know if any of you have heard about this, but it has been all over the news and is particularly exciting to me.

I've been looking for a personal trainer or someone to work with who will help me get back into shape, but make sure that I don't hurt myself in the process. This hasn't been an easy search and I have pretty much ended it to no avail.

However, there is this great program at the Rehabilitation Institute of Chicago that specializes in working with people who have chronic pain. It’s month-long, intense program that helps people build strength they have lost due to chronic illness and pain.

More information about the Rehabilitation Institute can be found here:

And information about the Pain Boot Camp can be found here:

Since I’m not in the kind of pain that I was before, this isn’t something I would do in the near future, but is definitely something I would keep in mind, should the need arise.

By the way, does anyone know of anyone in the area who works with people with chronic illnesses in terms of exercise and personal training?

My New Mantra

Baby Steps and Deep Breaths…

Think of this in an encouraging tone, rather than a negative one!

The Courage To Laugh... At Ourselves

While I was in Chicago this weekend, I was on my way to the club I talked about in the previous post (about Chicago).

I was dressed up for the first time in a while, wearing heels, and I totally tripped in front of a whole group of people.

Mind you, I tripped, but I did not fall.

And you know what I proceeded to do? Laugh my butt off. Yep, right there on the corner, I laughed at myself.


Well, for starters, anyone who knows me, knows that that is totally a “me thing” to do.

I’m not the most coordinated person in the entire world.

And you know what? I’m sick of sweating the small stuff. I didn’t get physically hurt, and I can’t even say that my pride was hurt all that much, because honestly, if I went through a week without tripping over my own feet at least half a dozen times, I’d be truly shocked.

And the other thing I’ve come to realize is that my true friends will embrace my quirks. If not, they aren’t true friends.

As I’ve said before, I think that disease and illness are, unfortunately, a really good way to weed people out of your life and find out who your true friends really are.

There are people that will be there for you no matter what, and there are those who will cut and run at the first sign of trouble and difficulty.

The people who have been the most helpful through all this, while they have been truly supportive, have also added humor to the situation. We’ve laughed together and cried together, but ultimately knew, that for better or for worse, life would go on – and somehow, together, we would survive.

It has been an incredibly long road for me to get to this point, where I think I can finally say that I can let go of the little things. Not all of them, of course, and I am still working on this on a daily basis. But I’m becoming more at ease with cutting myself, and others, slack.

I was quite shocked, actually, that I was able to make it through a full day walking around Chicago without totally bottoming out. But I did it! And I think this leads me to a new mantra…

Medication Regimen

So, here’s where the medication recipe stands:

One hour before breakfast – cellcept (1)
Half hour before breakfast – omeprazole (2)
before 9 a.m., but after food – prednisone* and hydroxychloroquine (3)
One hour before dinner – cellcept (1)
Half hour before dinner – omeprazole (2)

Plus your everyday variety multivitamin (1)

Wow, with a schedule like that, you would think I had a serious illness. Oh wait, I do!

* Although I am happy to report that I am finally on a schedule to get off the prednisone (hopefully for good!).

Chicago, Etc.

A non-illness related post (for once)!

So, this past weekend (read Friday and Saturday), I went to Chicago by train and had an absolute blast! Ate at Grand Lux Café and Giordano’s, which are musts if you’ve gone to the city and never been to those restaurants.

I went to this really fun place called Howl at the Moon. It’s a dueling piano bar. The thing that’s great about Chicago is that the city is so clean. And now that they’ve outlawed smoking in public places, it makes going to bars and clubs actually bearable.

I feel oddly at home in the Windy City, which made it really hard to leave. The trip wasn’t long enough, but, then again, it never really is. The trip made me realize how important the little things are and that sometimes we have to do things for ourselves, even if they seem totally insignificant to others.

For instance, it was comforting to be surrounded by Starbuck’s, not to sound like a snob, but it really was. There is something oddly comforting about seeing the familiar green and white sign. It’s like even though the scenery has changed, a big part of the landscape hasn’t.

Obviously, I’m not the only one who thinks like this. There’s a guy who went to all of the Starbuck’s in Manhattan.
You can view the video here. It’s pretty hilarious:

As of this morning, according to, there are 43 Starbuck’s locations in the Downtown Chicago area. The next time I’m in the Windy City, this seems like it would be a fun challenge to take on – as a bonafide social critique, of course. Granted, it’s nothing close to the 171 locations that Mark Malkoff went to in Manhattan, but it would be a challenge, nonetheless. That’s almost two Starbucks’ an hour over twenty-four hours, and the window of time would be more like twelve hours. That’s a lot of coffee!

And this also assumes that I come upon a windfall of expendable income and one of those cool camcorders that connects directly to the USB port of your computer…

It also proves that there is a Starbuck’s on every corner, or just about!

Thursday, May 8, 2008

For The Love Of Family

Recently I had a discussion with a friend who wondered if my sister was going to be tested for Lupus.

This wasn’t the first time I had considered this, but someone else asking the question really got me to thinking.

Should my sister be tested?

Would doing so spare her the pain and agony that I’ve been through over the past year?

There are several realities here:

1) I don’t just have Lupus and until the slate is wiped clean of the diagnosis of Multiple Connective Tissue Diseases, there really is no definitive about what I actually have.
2) There is no cure for most of these diseases at present, and finding out would only cause undo worry, especially since “normal” people can test positive for some of these tests.
3) With no cure and no symptoms, the tests would pretty much mean very little – and one could think they are developing symptoms, even if they are not – just because they are told that they might.

At the age of 13, I honestly think that just the experience of having the tests would be traumatic enough for my sister, regardless of the results.

At first, part of me was really torn, though.

What if I could prevent pain and suffering to someone in my family? But the truth is, unless I find a cure for Lupus, or Rheumatoid Arthritis, or the host of other autoimmune diseases that I may, by association, have, there really is nothing I can do. And if testing would cause pain and suffering, what’s the point?

Now I’m not suggesting that should my sister or anyone I know start displaying symptoms that would suggest they have one of these disease, that I wouldn’t advocate them going to their doctor.

But am I suggesting that anyone who has a 10% increased risk be tested as a prophylactic measure? Absolutely not. Because in this case, it isn’t really prophylactic, is it?

If you ask me, it’s just plain stupid. It’s asking for trouble and digging up dirt that should otherwise be left untouched. Unless, of course, there is something to suggest necessity.

Which, if you ask me, there isn’t at the present moment.

Rather than think that this is something that is going to muddle up my gene pool for generations, I’d like to think that in the autoimmune contest, I simply picked the short end of the stick.

The moral of this story is that there are no guarantees in life.

Just because I have these diseases does not guarantee that my sister is going to get them.

I can sit and question why I, an otherwise healthy person, was struck by a disease that survives by wreaking havoc on the body, and why it wasn’t Joe Blow sitting next to me, instead.

Or I can think that I’m lucky because I have good doctors and that with the right medication, hopefully this will only make me a stronger person and be a positive aspect of my life rather than a defining factor in that it becomes the only part of who I am.

Lupus Cookbook

Sometimes my culinary genius impresses even me!

The other night I made an absolutely delicious concoction of pasta, spinach, edamame, garlic, olive oil, and Italian cheeses (see picture above).

And it got me to thinking. So many people come out with cookbooks nowadays, based on everything under the sun – low fat, gluten free, low carb, etc., etc.

So why not a cookbook that focuses on foods that are healthy and help with the symptoms of lupus (and rheumatoid arthritis)? Plus, I looked on and there isn’t one!

There are two other components to this, as well:
1) I’ve found that when I am feeling well, I love to spend hours in the kitchen experimenting. It’s a good form of therapy and relaxation.
2) The recipes need to be easy because there are times when, despite medication, I (and others out there) aren’t going to feel like slaving away - or might not feel up to eating at all – but need healthy food to keep going.

As is evidenced here, I am never going to be a food photographer, but I think that I might be on to something here with the cookbook idea. I’ll keep you posted.

Plus, this actually fits into some of the goals I had for my life – like studying health and being a published author.

"Shopaholic" Series II

Well, I’m still on the frivolous book kick and have just finished the two newest books in the “Shopaholic” Series by Sophie Kinsella.

It’s really nice when someone’s biggest problem in life is what to buy next!

"Whenever You're In Trouble"

“Whenever You’re In Trouble” by Donny Osmond:

“Tell me from the heart
In your eyes I see the pain
It’s tearing you apart
Let me take it all away
You know someone believes in you
When they love you no matter what you do
You are home
And you’re not alone
When you hear me say

Whenever you’re in trouble
Whenever you may need me
I will fight for you
I will help you through
Whenever life’s deceiving
I’ll give you new meaning
No matter where you are
You’re always in my heart
Whenever you’re in trouble I will be right here

Sometimes you’re going to find
Nothing goes the way you planned
But whatever’s on your mind I will try to understand
You know someone is by your side
Whenever they help you through the darkest night
You know you are home
And you’re not alone
When you hear me say

Whenever you’re in trouble
Whenever you may need me
I will fight for you
I will help you through
Whenever life’s deceiving
I’ll give you new meaning
No matter where you are
You’re always in my heart
Whenever you’re in trouble I will be right here

Now’s the time
To share what you’re feeling inside
No matter how long it takes
No matter how many mistakes
Oh, now’s the time
To reach and you will find
That whenever you need me to care
I’ll always be there

Whenever you’re in trouble
Whenever you may need me
I will fight for you
I will help you through
Whenever life’s deceiving
I’ll give you new meaning
No matter where you are
You’re always in my heart
Whenever you’re in trouble I will be right here”

From the album, “What I Meant to Say


This song really speaks to me.

Plus, on a superficial note, I’ve had a crush on Donny Osmond since I was about 10 years old.

Another Word About "Sex and the City"

I know it’s cheesy, but I absolutely can’t wait for the movie to come out on May 30th!

Tuesday, May 6, 2008

Speaking of Bridges

Sure, situations like this, when your very existence is tested, can burn bridges, but can it build them, too?

I mean, I’ve definitely felt a stronger pull away from certain people than I have towards others.

It’s hard to act normal around people when things AREN’T normal in your life.

On the other hand, I don’t want people to solely see me as a “sick” person. Even on my bad days, I hope I’m a lot more than that.

I guess my frustration is that I am supposed to cut people slack for not empathizing with me, and yet when I’m not feeling 100%, no one is cutting me any slack.

Feeling Good Again... What Does That Mean?

You know when you are sick for a couple of days and when you finally feel good again, what a relief it is?

I’m starting to wonder how you make that transition when you’ve been feeling bad for months and months (read over a year).

I have to wonder if I’m even capable of knowing what it’s like to feel good anymore.

I know this sounds terrible. And it’s crazy to be feeling somewhat human because there is always the fear that I’ll get back into my old ways and hit rock bottom again.

And does it matter that pumping my body with 1500mg of steroids in 3 days brought on this good feeling?

"The Bridge"

“The Bridge” by Elton John:

“I've seen the bridge and the bridge is long
And they built it high and they built it strong
Strong enough to hold the weight of time
Long enough to leave some of us behind

And every one of us has to face that day
Do you cross the bridge or do you fade away
And every one of us that ever came to play
Has to cross the bridge or fade away

Standing on the bridge looking at the waves
Seen so many jump, never seen one saved
On a distant beach your song can die
On a bitter wind, on a cruel tide

And every one of us has to face that day
Do you cross the bridge or do you fade away
And every one of us that ever came to play
Has to cross the bridge or fade away

And the bridge it shines
Oh cold hard
come and risk it all
Or die trying

And every one of us has to face that day
Do you cross the bridge or do you fade away
And every one of us that ever came to play
Has to cross the bridge or fade away”

From the album, “The Captain and the Kid


I think this pretty much just about sums it up!

Time II

I guess in some ways I’m grateful that I am able to experience some of the things that I am now, rather than later. I guess it’s better to be learning now the limits of my body than when I’m 60 and have lived my whole life thinking that I’d feel 20 forever.

Monday, May 5, 2008

"Sex and the City"

This all makes me think back to the “Sex and the City” episode where Carrie, Charlotte, and Miranda go with Samantha to chemo. It’s a hot summer day and they are all sitting there eating Popsicles, keeping Samantha company, and making the best out of an otherwise crappy situation.

I think it has to be just about one of my favorite episodes of the entire series.

However, it also profoundly saddens me.


Well, last week, when I had to go for my infusions, other than my immediate family members, no one was banging down my door, telling me that they were coming with me, no matter what I said to dissuade them.

Don’t get me wrong, I’m truly grateful to the people that were there for me. And I know that there were people who weren’t there, who were supporting me in other ways…

But what about all of the people that weren’t?

Do I not have good friends?

Am I a bad person?

Am I expecting too much from people?

And why does a show about sex and shopping have some many life lessons to teach us?


A situation like this (as I’m still not exactly sure how I’m referring to what has been going on, yet) makes you keenly aware of time.

While it’s true that Lupus is no longer a death sentence, there are lots of complications that can occur – organ failure, necessity of organ transplant, heart and lung problems, and the list goes on and on.

And it’s like, believe it or not, that I did and still do have plans for my life. I would like to get married and have children eventually. I want to write at least one book. I want to travel the world.

But all this is complicated by finding someone who is willing to love you, unpredictable disease and all, and then is willing to face times that are guaranteed to be scary and uncertain.

I know I’m young, but it’s like lately, I feel like my best pick-up line is (drum roll please), “I might look like I’m 22, but I feel like I’m 80.” How’s that for trying to snag a guy?

My mom keeps telling me that in order to meet people, I actually have to leave my apartment. Well, duh! But lately that’s easier said than done. Especially when you’re not feeling good, it’s easy to get stuck in a rut – doing the same old, same old, comfortable thing. I pretty much have a date with my couch just about every night.

This was supposed to be my year. A year of change. A year of doing things I’ve only ever talked about.

Well, this certainly has been a year of change – just not the kind of change I was expecting – starting grad school, surviving my first year, being diagnosed with multiple autoimmune diseases, trying to survive that…

Catch Up

Sorry I haven’t written in several days. There are three reasons for this:

1) For the Solu-Medrol infusions, they left the IV in my arm so they wouldn’t have to re-stick me, so I could only type with one hand.
2) After I finished my Solu-Medrol infusions, I went to my parent’s house for a little R And R. Plus, I had a dentist appointment on Monday. This was a normal, six-month checkup. Finally, not a doctors appointment where I went saying, “I’m in so much pain, I think I might just die right this second.”
3) I sort of made a promise to myself that I would try to write a little less often than I have been (I think I posted fifty times in 10 days!). Although writing has been a really good form of therapy for me and also, I haven’t had much else to do, being out of school and waiting for my internship to start.