Like Lilies of the Field

Science and People

2008-07-11T10:05:00.009-04:00

My physical therapy for my left knee is ending soon. The therapist asked when I’ll be seeing my rheumatologist again. So I told her that I’ve switched from the doctor who originally prescribed my PT. On hearing my new doctor’s name, her eyes lit up. Speaking highly of him, she used almost the exact same words in “Good Rheumatologist Hunting Episode II: A New Hope”. It’s as if she had read my blog.

When I mentioned this story to my husband, he wasn’t surprised. He said that from ten feet away, one could tell already that he’s a good doctor. My husband then added that my previous rheumatologist didn’t make a good first impression with his noticeable lack of enthusiasm, but quickly added that, in all fairness, he seemed interested in the science—only not so much in people.

I thought that was an interesting observation. I don’t know what took me so long to switch, but I’m just glad I’ve found a great doctor now.

Etu, Lupus?

2008-07-08T13:29:00.021-04:00

When my new rheumatologist called about the results of my blood work and hand x-rays, he sounded so nice on the phone: He asked for me by first name and how I’m doing. I know these are part of standard phone etiquette, but I’d gotten used to curt, unfriendly treatment from staff and even my prior doctor. I was surprised.

I was so nervous that I could hardly comprehend all that he was saying. All I really wanted to know was the result for lupus. He said that my ANA did come out elevated, so I will need to have more blood work done.

Here are the good news:

I don't have hepatitis C.
My vitamin D level is good.
Sjögren’s syndrome result is negative.
My thyroids are normal.
My hands are ok, but he wants to confirm the x-ray film himself.

I don’t even know how I could remember all the things he said. Did I mention that I was nervous? Amazingly, I remembered everything he said in the two-minute call, including that term, ANA. Later, I googled the following:

The ANA test is ordered when a patient shows signs and symptoms that are associated with SLE or another autoimmune disorder. It may also be ordered when a patient has been diagnosed with an autoimmune disorder and the doctor suspects that the patient may have developed an additional autoimmune disorder.
Two subset tests for specific types of autoantibodies, such as anti-dsDNA and anti-SM, may be ordered to help confirm that the condition is SLE.
More than one-third of people with rheumatoid arthritis have a high ANA titer.
Almost all people with SLE have a high ANA titer.
However, most people with a high ANA titer do not have SLE.

What will be my fate?I now know that I belong in category 3 above. I do hope that it is the only reason I have elevated ANA, because that is apparently common with RA people. I hope I’m not in category 4 and that 5 applies to me.

My initial gut feeling was that I don’t have it. I don’t have the classic symptoms. Now, I don’t know. I’m not too sure anymore about what else might be wrong with me. I guess I don’t want to raise my hopes too much, only to get devastated later. I’m taking plaquenil and prednisone already. Could these medicines just be hiding the symptoms of another similar autoimmune disease—SLE? Sometimes, I get muscle pains on my back, neck, and arms—could that be why? And why did I have flareups where I was hurting from head to toe? Is that just typical of rheumatoid arthritis? So I have my doubts. This new doctor is right, it’s something to be checked just to make sure. He said that it is not typical for someone with RA to have lupus too.

This has been on my mind since the call. It’s driving me nuts! Every hour, I have to remind myself that there’s nothing I can do if I have lupus. No amount of worrying can take it away. No amount of worrying can add a single second to my life. If it’s in me already, I should stop obsessing about when I will know. This thought helps me a little to snap back to reality and take care of mundane chores. That is the reality of life—we live and go on. Even if I die right now, the world would not stop spinning. Everyone would go on.

Hearing Bad News

2008-07-03T11:07:00.016-04:00

I was explaining to my mom on the phone last night about their upcoming immigration interview, when I sensed that she wanted to blurt in a piece of news to me. The line was a little noisy and I am usually not happy when she tells me unimportant details. But she was unstoppable:

Mom: Len, there's some news I have to tell you before I forget.

Me (nervous): What? Is it bad? Wait! Don’t tell me yet. I’m not ready...

Mom: [A childhood friend]... has breast cancer...

Me: Whooo!? Whaaat!? Who has cancer???

Mom: Why do people get breast cancer these days? It must be from what people eat!

Me: Everyone has something these days, Mom! Everyone dies from some type of cancer. She’ll be alright. Breast cancer has higher survival rates, especially if detected early.

She’s my childhood friend from the Philippines and lives in Canada now. She was planning to vacation back home but had to cancel—obviously, she needs treatment. My mom said that my friend is depressed these days.

How could I even explain that her own daughter has a chronic, incurable autoimmune disease—rheumatoid arthritis and quite possibly... lupus. But no sense in telling her these things; I don't want her to worry about me.

Then we talked about other things, but after I hung up, there was nothing on my mind but my childhood friend. My memories of her are mostly from preschool. Then in our teenage years, I remember her being shallow, spoiled, popular, fashionable, confident, articulate, and bubbly.

She is my age and, like me, has two sons now. Our houses were right next to each other. Her mother and my father both worked in a big banking company. Her mother was my godmother and my mother is her godmother. She is the youngest of five children, just like me. In fact, each of her siblings is the same age as one of my siblings. That means, every time my mother was pregnant, her mother was pregnant too.

Because we are both the youngest, could that mean we are the weakest links? She has breast cancer, and I have my autoimmune disease. Does that mean our genes are not the cream of the crop because our parents were older when we were made?

Times like these remind me of my aging—I’m sick, childhood friends are sick, colleagues are dying of cancer. I know fewer and fewer survivors from my generation. Somehow I feel connected to a person born in my birth year.

Illness grounds us. It reminds us that life is fragile, delicate, and ephemeral.

That night I couldn't sleep right away and was still thinking about her. The following morning, I woke up from a weird dream:

I woke up at dawn and found myself, my infant, my toddler, and my husband all sleeping outside on the porch. I got up and decided to go inside with my baby, when I noticed that there was someone in the old vehicle parked in the driveway. It was a little dark, and all I could see was the silhouette of a man coming out of the vehicle slowly, grimacing, and walking as if struggling from arthritis. Then I recognized him as a dear friend of mine, only there were some big nodules hanging from his face. Somehow I knew that he didn’t want his wife to see his condition, so he didn’t go home that night and slept in the car. I couldn’t bear seeing him that way, so I made up a lame excuse and asked my husband to take care of him. The end.

Bad Girl Gone Badder

2008-07-02T15:57:00.016-04:00

I have been feeling better again this week. I’m back to being good to my body again—eating right! I’ve stocked up on black grapes, pineapple, organic broccoli, chicken breast, yogurt, shrimps and fish again.

I've started drinking organic green tea as soon I read about a new study finding that it could benefit people with rheumatoid arthritis. I add milk and raw sugar. Try the green tea latte at Starbucks—it's sooo good and strong. They probably use a concentrated powder. The one I have just comes in regular tea bags.

Whether this new study is true or not, I like drinking tea anyway, especially while eating my favorite Filipino dessert, ginataang bilo bilo (sweet rice balls in coconut cream). Yum!

The week I saw my new rheumatologist, my wrists and hands were hurting. I also looked bloated—my face puffy. I had been bad to myself, eating crap in the house and at parties. I should have known better! But after feeling good for so long, we forget and give in to temptation.

It is another painful lesson for me. It is easy to break away from a healthy lifestyle, but for someone with rheumatoid arthritis and takes medication like prednisone—a water retainer—the adverse effects appear right away. Like fragile glass, I break easily. Like a sponge, I retain water easily.

Yesterday I asked my husband to cook two of his few specialties: Shrimp with turmeric, garlic, other spices, and broccoli in oyster sauce. I prepared ingredients for him when my baby was napping. I shelled the shrimp and cut the broccoli. So all he had to do was to actually cook them. He moves so slowly in the kitchen, I get impatient just watching him especially when I’m too hungry. I may have RA, but I do things fast and efficiently in the kitchen.

Speaking of turmeric, I’ve read that it is good for rheumatoid arthritis, and shrimp are rich in vitamin D.

Here are the article links:

Hydrangeas

2008-06-28T15:12:00.026-04:00

I took some pictures of my hydrangeas yesterday. I had planted them when I didn’t have rheumatoid arthritis yet.

My backyard is a big mess right now. Since having been diagnosed four years ago, the hydrangeas have not been treated with pine mulch. As a result, weeds have been crowding them. Despite my lack of TLC, the hydrangeas have been thriving and growing like crazy!

The husband is not much help with the garden. He can’t even tell weeds from plants. Why is it so hard for him? *Sigh* The leaf and stem of every plant is different from one another.

When I planted them, I was too over-ambitious. I envisioned a Japanese garden. I dreamed of having a summer garden like one of those on East coast beach properties. I was too greedy. I wanted to plant every variety and planted all over the perimeter of my big backyard. Who would have known that I wouldn’t have the physical energy to take care of them someday.

Now with RA and two kids under age three, if I were to start a garden, I would have planted only three shrubs—something I could manage.

I thought about hiring people who do yard work. Maybe someday when money is not tight. We’ve had unexpected bills lately: my surprise medical bill (read Bloody Bill), the $350 fine for not mowing the lawn—long story.

Hydrangea Macrophylla 'Homigo'

Hydrangea Arborescens 'Annabelle'

Hydrangea Macrophylla 'St. Therese'

Hydrangea Serrata 'Blue Bird'

Hydrangea Macrophylla 'Nikko Blue'

a young bloom on Hydrangea Macrophylla 'Nikko Blue'

Hydrangea Macrophylla 'Brestenburg'

Hydrangea Macrophylla Normalis 'Blue Billow"

Hydrangea Serrata 'Preziosa'

Good Rheumatologist Hunting Episode II: A New Hope

2008-06-25T15:35:00.017-04:00

The search is over! I’ve finally made my decision and picked the older rheumatologist over the young hotshot that I used to see. This older doctor is closer to my house, an Ivy league graduate—just icing on the cake—and is on the same floor as my gynecologist—in fact, he knows her.

I saw him yesterday, and he had all the answers, including how to have my blood work covered by insurance. Now I know the answer to my question:

Does a “better” rheumatologist make a difference?

He does.

He’s thorough about my current health, my vitamins, and my birth control plan, and he ordered more tests on TB and Lupus. Actually, the thought of having Lupus aside from RA is scary. He said, I probably had been tested already before by my first rheumatologist, but he just wanted to make sure. He also ordered an x-ray on my hands. He thinks I have some bone deterioration already because I can’t bend my wrists that much. I will find out the results on July 7th.

He also noticed how my left knee is a little inflamed. Finally, I have gotten confirmation that my left knee has some kind of inflammation and is not just fat!

He also wanted to speak to my gynecologist.

He laid out the plan of attack. No sweet talking, just honest-to-goodness stuff.

At the end of the visit:

Me: You know what, Doc, I’m going to switch. I think I’m going to choose... you.

Doc: It is up to you. Whatever you decide, I’ll be happy to take care of your health.

But right after he said that, he ordered all those tests right away, as if I’d already switched.

I think I have found what I’m looking for.

Dear Sasha

2008-06-20T12:55:00.019-04:00

Thanks for reading! That’s just how life is; we just have to take it easy. With only 4 years of living with and experiencing the frustrations of this disease, all my annoyances somehow seem funny (sometimes). I find humor with all these little quirks in people whom I’ve had to deal with and who’ve had to deal with me—difficult person that I am, with or without RA....

1. My super-laid-back husband—when is he going to get fed up with the sickly wife?

2. My too transparent rheumatologist, who’s constantly staring intently into his PDA during my visits—what’s in there, I wonder? All the knowledge from medical school? With that face, he couldn’t win a poker game. He’s such a character—how could I blog without him? If Cosmo Kramer and Dwight Schrute made it, he’d be their baby.

3. All the receptionists and nurses, two of whom are visibly playing solitaire side-by-side. Maybe they’re competing? Hmmm, no wonder they’re so eager to hang up on me. They’re just too busy!

I’ve enjoyed your writing too. Like this part in your article entitled Living with Chronic Pancreatitis was too funny:

“... but it’s pancreatitis that scares the living shit out of me and makes me get on my knees and pray.”

I’m new to blogging, and I’m finding it quite therapeutic. I’m glad to hear you’re feeling better lately!

Sincerely,
Elena

P.S. I created Simpsonified characters of Halle Berry and me. Here, we almost look alike (in my dreams), except Halle’s nose is bigger.


Halle	Elena

Vanity Fair

2008-06-20T08:10:00.014-04:00

Am I too vain for my own good? On a visit last winter with my rheumatologist, I inquired about the small dark dots all over my legs.

Me: Doc, my gynecologist told me to ask you if these dots on my legs are related to my rheumatoid arthritis.

Doc (with of-course-not-your-gynecologist-is-an-idiot look): Nah! They’re not itchy, are they?

Me: That’s what I thought too. No, they're not itchy.

Me (thinking skin looks ugly): OK, I’ll go see a dermatologist then.

Doc (with you-have-RA-what-do-you-need-flawless-skin-for look): ...

I have to admit, I was more worried about wearing short shorts in summer with these hideous dots on every follicle of my legs.

Bloody Bill

2008-06-19T09:30:00.013-04:00

I was crying my eyes out after I saw the hospital bill for my rheumatoid arthritis blood work. The amount due was $525. I panicked and knew somehow I had screwed up with my insurance.

I’d never cried like this even from the most painful flareups. Not like this, where my body is feverish with anger. My ever laid-back husband asked me who died and why I was crying like that. That annoyed me even more, so I answered him, that money is enough to keep someone alive. I cried even more as I thought of how that money could have been used for so many other things—birthday parties for my two boys, a charitable donation, money for my father.

Nevertheless, I called the hospital and confirmed what I had already suspected. My insurance refused to pay in full. My husband called and found that the reason was that the lab work was done in the hospital and not in some independent laboratory like Quest Diagnostics. In short, my rheumatologist should have issued a Quest Diagnostics form instead of just a simple prescription.

Pffft!!!!!!!!

Blood Work

2008-05-28T10:23:00.024-04:00

With the help of the Internet, I have been learning how to read my blood work results, which I had requested from my rheumotologist’s office. Particularly interesting are items marked H (High):


CCP Antibody, IGG
CYCLIC CITROLLINE PEPT              >60       H

REFERENCE RANGE:
NEGATIVE:                       >20
WEAK POSITIVE:                   20-39
MODERATE/STRONG POSITIVE:        40-59
STRONG POSITIVE:                >59

                                            EXPECTED VALUES
RHEUMATOID FACTOR                    59       H         [>20]    IU/ML

According to http://www.labtestsonline.org/understanding/analytes/ccp/test.html, I am more likely to develop a more severe form of RA because both my CCP Antibody and Rheumatoid Factor levels are both high (Strong Positive). Yay.

No wonder my rheumatologist told me there was no way I was misdiagnosed when I asked him about the possibility. He said all my blood work results say I have RA. He did say there is always a possibility of misdiagnosis. But in my case, it is 99.9% assured—a zero point one per cent possibility otherwise.

What bugs me is how much more severe it could get. Without meds, I know mine is severe enough that I’d be bedridden—and not just bedridden, I wouldn’t be able to move from head to toe—everything would be stiff, flaring, unmovable, untouchable. At 3 months postpartum, I was surprised to hear from my current rheumatologist that my RA is actually milder than his initial impression. How do doctors compare the severity of RA among patients? By response to drug treatment or how much misery endured when off meds?

The blood report also indicates I don’t have chronic kidney disease or kidney failure. But some items are low like BUN, ALBUMIN, LYMPH. I guess they’re not of concern—my doctor did not call or say anything. If they are, I’ll see him in court.

Oh, how I miss my prior rheumatologist—why did she have to relocate? Last night, I thought about her again and realized how rare she is. She was sweet and personal, always calling about my blood work results, asking about my son by name, and greeting me in the waiting room before my appointment. I was thinking, maybe we’ll follow her someday.

Foods and Rheumatoid Arthritis

2008-05-22T13:35:00.017-04:00

I am compiling foods that are good or bad for someone like me with rheumatoid arthritis. I don't go overboard or get obsessive. I just keep them in mind—the good ones are yummy anyway and generally beneficial, even if RA is not a concern.

Eat favorite foods in moderation and use common sense. We live only once, so why not treat ourselves to the occasional cake and ice cream? At least we’d die happy, don’t you agree?

Besides, RA is an aggressive disease. Diet alone won’t work. We really do need drugs!

Foods that help prevent inflammation:

pineapple—good thing I love this fruit
blueberries
dark grapes
broccoli

Foods good for joints:

salmon, cod, halibut, swordfish—high in omega-3 fatty acids
yogurt—rich in calcium!

Foods that could trigger inflammation:

tomato sauce—but I love spaghetti! I can’t believe it! I often eat spaghetti and don’t feel any worse. Besides, if I avoid tomato sauce, I would also be missing its antioxidants.
red meat like beef—I’m not that fond of steak, so this is ok.

Rheumatology at Jefferson Hospital

2008-05-22T11:32:00.009-04:00

The Philadelphia Magazine in its May 2008 issue rated top Doctors, hospitals and medical centers in Greater Philadelphia area. Online, here's a small article I got from PhillyMag.com:

Excerpt from http://www.phillymag.com/articles/features_centers_of_excellence_lupus/

Centers of Excellence: Lupus

Since its establishment in 1992 under Raphael DeHoratius, a world-recognized expert in this incurable autoimmune disease that typically attacks females 20 to 40 years old, the Lupus Center at Jefferson has treated thousands of women, trained innumerable physicians and conducted invaluable research. The practice brings together a group of lupus sub-specialists including rheumatologists, nephrologists, dermatologists, pulmonologists, hematologists, and, in particular, high-risk gynecologists. One of its significant services is the management of pregnancy, as lupus patients have trouble with conception and premature delivery. This is a referral center for the entire region, frequently treating patients who cannot be helped elsewhere. In addition to medical treatment, it’s not unusual for staffers to aid in an emotional crisis. They’ve helped a 25-year-old woman get through final exams when her lupus flared up, and helped a high-school senior squeeze into her prom shoes when lupus swelled her ankles to twice their normal size (111 South 11th Street, 800-JEFF-NOW, jeffersonhospital.org/rheumatology).

Chill Pill

2008-05-21T14:49:00.024-04:00

Oooh, I’m pissed after talking with my rheumatologist on the phone again. First, he called me “Mrs. Yeung.” Why couldn’t he just have addressed me by my first name? I wouldn’t have minded “Elena Yeung.” I felt as if my doctor was:

trying too hard to distance himself
being a clueless, chauvinistic pig.

Am I being too sensitive?

Second, he sounded annoyed. A few weeks before, I had called him because he screwed up my prednisone dosage, causing me pain and stiffness—but that’s another story....

Third, he told me in an “Oh, take a chill pill” tone, why don’t I just take some Ibuprofen. That irked me because all the Ibuprofen I had taken before my second pregnancy didn’t help. He made it sound that I was wasting his precious time.

The reason for my call was that I needed a physical therapy (PT) prescription for my left knee. But I didn’t tell right away because I wanted to hear from him directly that I should have PT.

My knee has always been in pain or at least weaker than my right knee since having been diagnosed. If not RA joint pain, it’s at least related to RA. I’ve been complaining about it in every visit, but have never gotten a straight answer.

After beating around the bush, he said the magic words.

Doc: Sports medicine works for some people. If you want, I could write you a prescription.

I'm frustrated that I have to squeeze this doctor for answers.

Then Why Can’t It Be Me?

2008-05-20T16:43:00.011-04:00

As with most people stricken with unfortunate sickness or calamity—I won’t lie—there are times I ask, “Why me?” Of all the people, Lord, why me? Of the one percent of the general population, of the one in every one hundred, why, oh why, have I been picked for this disease?

And then I think, who should it be then? Should it be instead my poor sister? And I stop right there, because I can’t bear the thought. It’s ok that it’s me. It’s better that it’s me. I have the resources. I live in a country with the best doctors in the world. The medical system might not be perfect, but still I can afford the best treatments.

So I tell myself that I’m giving RA a good fight. I won’t let it win over my life or my soul.

I may not know God’s plan right now, but He knows I can handle this challenge and the trials in my life. He won’t give me something I couldn’t possibly handle. But I know for certain my faith may not be nearly as strong as Job's. Still, his words echo in my mind:

“Shall we accept good from God, and not trouble?”

Gloriosa Lilies

2008-05-19T16:08:00.012-04:00

Like the flowers that inspire me on faith and life, lilies of the field—it turns out—a certain kind of lily, Gloriosa superba (Latin name), has a substance used in making drugs for treating rheumatoid arthritis. How appropriate is that?

The plant is highly poisonous, so DON’T eat it.

Excerpt from http://www.flamelilyflowers.co.uk/flamelily/index.asp:

Today Gloriosa has been shown to have even more valuable medicinal properties. Its seeds and roots contain the alkaloid Colchicine, which has many uses in the pharmaceutical industry. The drug has been used to treat gout and rheumatoid arthritis and Colchicine derivatives are now being employed in cancer chemotherapy.

Thanks to its medicinal properties, this wild plant, which until a few years ago was considered just a poisonous weed, is proving to be a lucrative cash crop.

Pregnant and Fit

2008-05-14T14:56:00.016-04:00

My second pregnancy was totally different from the first. How different? Let me count the ways:

2nd	1st
Vaginal birth.	C-section.
Symptoms present, but milder.	In remission, completely off meds.
Gained only 13 pounds.	Gained 46 pounds.
Was active.	Was a lazy bum.
Healthy foods.	Dim sum and Thai foods.

Even my postpartum was easier. Maybe not having to experience a painful recovery from a c-section helped, or maybe having already learned how to care for a newborn, I wasn't as overwhelmed as the first time.

6 weeks after I gave birth, my weight was back to 115 pounds. Just by consciously maintaining healthy eating habits and avoiding salty foods, I’d lost another 5 to 6 pounds. Then I started working out 3 to 4 hours per week. It was a slow, long process, but as of this writing, I'm back to my original weight (100 pounds) from before the pregnancy business.

To my surprise, even my arthritis symptoms are milder this time. By textbook, postpartum flareups should be stronger, so I can’t complain. I beat the system in my own little way, and I feel good to have a little control over my crazy immune system with a mind of its own.

All this would not have been possible without the following people.

1. My Ob/Gyn had told me that prednisone is a water retainer and to avoid eating salty foods like patis (fish sauce), toyo (soy sauce), bagoong (salty shrimp paste), and rock salts on fruits. She is familiar with Filipino eating habits.

2. My husband has been taking care of our children on my workouts. I'd never thought that I could possibly squeeze in going to the gym with having a newborn and a 2-year-old. But my husband has been supportive and understanding of the importance of exercise on quality of life.

45 Days To Methotrexate

2008-05-13T15:55:00.019-04:00

As my next appointment gets nearer and nearer, the more I dread the day. It is the day I begin my new life with methotrexate. There will be no turning back; there will be no holiday break; this drug will do what it’s supposed to do—slow down the overactive immune cells attacking me. Euphemism aside, it is chemotherapy. Okay, maybe it works a little differently from cancer treatment. But what the heck, a rose is a rose by any other name.

In light of this inevitable treatment, I’ve started thinking on whether my husband and I are done making additions to our family. To have two healthy boys already, I’m blessed! Do I really want more? Should I risk my health to try for number three?—and risk having a baby with congenital disease or Down’s syndrome? Not exactly the healthiest person, I am 37 already.

But every pregnancy is a risk, and my 6-month-old is easy. Besides it’s fun to always have a new baby in the house. Babies are adorable and cute, like puppies.

So I go from thinking “Yeah, why not? I can still try”—to “Nah!”—back to “Yeah!”—back again to “Nah!”—and finally back to “Yeah??? Could it really still be possible?”

The other day at the dining table, I brought up these thoughts with my husband the sperm donor:

Me: What if we try for a girl again?

Husband (with the I-want-to-get-laid look): Do you want?

Me: I have to try for number 3. I just have to! That is the pattern in our families! Your sister and mine are both the third! Don’t you see the pattern there?

Husband: Well, look at them!

Me (laughing hard, then sighing): Yeah, right? They are both nutzos.

Then:

Me: Okay, you have to submit your sperm to a lab to test our chances of having girls.

Husband (annoyed): No! It's not covered!

Me: Pay for it! I have to know our chances. If there is a fifty-fifty chance...

That day, I tested the waters and learned that my husband could consider trying for number 3 after all. Two days later after those euphoric conversations, my skepticism returned:

Me: Could we really even handle another? Would it be fair to the next one if we can’t handle that much? Would it be fair to our two boys?

Husband: It wouldn’t be fair to anyone! To the new one. To the boys. To you. To me. To the world!

Me (laughing hard at his over-exaggeration)

Husband: That’s it. We are done! Two boys and I feel blessed!

Me: You mean, I am done! You could have babies with other women! This is it, you know! I’ll be on methotrexate, and the baby factory will be closed, so I want you to be sure of your final decision!

If I Could Debug Me

2008-05-12T15:35:00.028-04:00

if ( my( big messy autoimmune disorder )
     is( but one neat little automaton ), if only! )

   i would:

       crack me open line by line
                     character by character
                     byte by byte
                     bit by bit
       see where i had

       gone AWRY;

   i would:

       parse every syntax
       compile every grammar
       trace every logic

   until i find my bug...

       and fix me,
       not just patch.

Grocery Items

2008-05-12T11:58:00.011-04:00

On a typical restocking run to the grocery store, I was following a woman in the 15-items-or-less lane. Her purchases:

bags of Herr’s potato chips
Turkey Hill ice cream
sodas
muffins
cake

My purchases:

a bunch of Vanilla yogurts
cage-free brown eggs
Stroehmann 100% whole wheat bread
milk
2 bottles of Harvest Surprise Juicy Juice
organic romaine lettuce
2 pounds of pork ribs
blueberries
5 tomatoes on the vine

She paid $20. I paid $40. I thought “Not so bad for all these good things.”

Then when I looked at the woman, I thought “I bet she’s not sick like me.... I bought these healthy items.... Yet inside, my body is invisibly fighting off my own confused and crazy immune system... and there she is with all those high-in-salt, high-sodium, lots-of-sweet, and sugary foods.... True, she is on the heavier side.... Other than that, she’s probably OH-KAY.”

Life.

Painful Reminder

2008-05-11T15:48:00.024-04:00

I’ve been forgetting to take my meds—twice this month. The last time was Saturday night. I woke up feeling my wrists hurting, and my first thought was “I must have forgotten to take my meds....” A look in my daily pillbox confirmed my suspicions: Prednisone and Plaquenil were still in the Saturday box! Good thing it was Sunday because my husband helped with our 6-month-old.

Readily taking my Sunday morning meds, I hoped they would kick in immediately. I didn't want to waste half the weekend because of another really bad flareup.

Lately, on almost every Sunday, as a break from the mundane healthy-eating lifestyle I acquired to deal with my rheumatoid arthritis, I have been cooking blueberry pancakes and whatnots—eggs and, as a rarer treat, bacon. The eggs are cage-free brown eggs scrambled with garlic. On this Sunday, I tried a gourmet bacon: nitrate-free and according to the manufacturer, made from their own pigs fed on only vegetables. The husband asked jokingly whether I was becoming a vegetarian.

It was a little tough cooking this morning though because of stiffy hands, especially when I had to grind fresh pepper on the eggs. My husband had to do it for me while I took a turn with our baby. Other than that, the Sunday morning breakfast as usual was delish!

Later that day, I felt so tired and feverish from the flareups, I napped with our baby. Once or twice I saw him opening his eyes, only to go right back to sleep as soon as he saw me next to him. He is such a super behaved baby!

After our little siesta, I felt a little better, but still I was feverish and my wrists were stiffy until around 7 pm. I should never, ever forget to take my meds again! My husband joked with his usual sarcasm that I’m lucky I don't have diabetes:

Me: What happens when diabetics forget their meds?

Husband: They don’t.

Me: But what if they did forget?

Husband: They’d die.

Pregnant and Fat

2008-05-09T16:06:00.030-04:00

Months after I was diagnosed with rheumatoid arthritis, I got pregnant with my first child. Then with my rheumatoid arthritis in remission and me off meds completely!—I was happily, wishfully thinking that it would never return!

I was also thinking “I eat for two now” and not exercising. I was eating dim sum almost every day and often at the Thai restaurant, where they would kindly serve free Thai iced tea to the pregnant woman. I wasn’t exercising because I was afraid of miscarriage. After all, it was my first pregnancy at an age considered borderline high risk—I was 34.

Early in the pregnancy, I was fit, weighed only 100 pounds, and was complimented by the nurse as being “the model pregnant woman.” But on my labor day, I weighed 146 pounds.

After 10 hours of labor, I stopped dilating at 8 centimeters, and my baby was faced up—considered breached. I ended up delivering via c-section. I had a healthy baby boy weighing 7 lbs 4 oz. He is so cute and it was all worth every pain!

Back home, everything was overwhelming—being a new mom—knowing little about caring for a newborn—being in pain from the c-section—raging hormones causing wild mood swings—always picking on my poor husband—I called it baby blues; he called it postpartum depression, ha ha ha.

Then no miracle happened; of course, my rheumatoid arthritis came back, this time ten times worse than when I was initially diagnosed. That made me realize the seriousness of the disease—painfully.

I wasn't able to exercise right away because of my c-section. I was a big mess: Joint pains were progressing every month, and because I was breastfeeding, I was only on prednisone.

Then one day, waking up in pain from head to toe, I couldn't even move my neck to look sideways. My whole shoulder was in so much pain, I couldn’t raise my arms an inch. I felt feverish and ashamed—embarassed to be seen by my husband. An 80-year-old woman looked stronger. I couldn’t take care of my own baby. But my husband, who fortunately had plenty of vacation leave and could work at home, was of great help.

For the first time in my life, I got fat. Friends would tell me that I finally gained weight and that it looked good on me. (“Right! Thanks for the compliment.”) I knew what I looked like:

My face was puffy or moon faced.
I was wearing size 6 pants—I had always been size zero before.
My legs and knees looked fat and swollen.

Once I had a really bad flareup where my knees were hurting so badly and so swollen and puffy, I immediately called for an emergency appointment. My rheumatologist was diligently checking my knees for inflammation when I broke the long silence:

Me: At first, I thought my knees and thighs were just fatty.

Doc: Aahhm, yes, they are fats, not inflammation.

Me: Oh!

Doc: These here are called fat pads.

Me (red from embarrassment): I never had these things before.

Doc: I know! Pregnancy is such a cruel thing!

Let me point out that this doctor had just given birth too around the same time, and she looked fit. There I was, thinking “Where did I go wrong?”

Determined to lose some pregnancy pounds, I bought a stationary bike, which helped some, but not much. Plus, despite taking 400 milligrams of Plaquenil, 15 milligrams of prednisone, and some Ibuproben on an as-needed basis, I was still feeling less than 100 percent normal and still had flareups on knees, feet, and hands.

18 months after giving birth, I was still fat—20 pounds overweight, size 4—puffy faced, and flaring. That was before my second pregnancy.

Next Time I Fall In Love

2008-05-09T11:18:00.011-04:00

My husband and I live in a house we bought when we were newlyweds. We didn't have children yet, and I didn’t have symptoms yet. At first sight, I fell in love with the two-story house, the big yard, and the many old trees.

I love it. There is something to look forward to with every season. In autumn, beautiful, bright yellows, reds, and oranges dress the maple trees. In winter, a shimmering white blankets the ground. In spring, daffodil-and-tulip yellows... magnolia-and-dogwood pinks and whites... rhododendron purples... azalea whites, pinks, reds, and lavenders... sprout forth. Early in the morning, birds chirp chirp chirp and the red cardinal returns again. In summer, blues and pinks sprinkle the big, mophead hydrangeas—I planted these when I didn’t have arthritis—not to mention the purple cone flowers, the echinaceas, and the shrub with orange and yellow butterflies visible from the kitchen window.

Now five years later with RA and two kids under three, life has been busy. The stairs are challenging when I have flareups. I have neither time to care for a big yard nor energy to clean a big house. The grass grows tall before my husband can mow it. As a result, we often receive memos from the borough.

As much as I love the house, I can’t keep it. Like a beautiful, high-maintenance woman, the house is needy of time and money.

God willing, if we were to look for another house in the future, I would keep these things in mind:

No stairs. Preferably ranch. Flat condo unit maybe.
Nice modern kitchen (because I cook! Easy-to-clean kitchen, clean-line cabinets! Stainless steel double sink).
No yard to maintain, no lawn to mow (although I do want a small garden bed to plant hydrangeas).
Nice school district for my children.

Good Rheumatologist Hunting

2008-05-09T08:14:00.027-04:00

If, like me, you see your rheumatologist more often than you see your own family and friends, then you probably expect your doctor to not only excel in his field, but to also empathize well with patients coping with a disease as disruptive as rheumatoid arthritis. At least I expect that from my own doctor.

Recently, I have been contemplating about switching. But aren’t all rheumatologists the same? They would just prescribe me methotrexate, right? How would a “better ” rheumatologist make a difference? Would a “better” rheumatologist mean a longer life? Could it mean the difference between life and death?

When I was first diagnosed with rheumatoid arthritis, I started seeing a young female doctor. She was sweet and friendly. My first son—who was around 1 year old at the time—liked her, and she liked him to the point that sometimes she paid more attention to him than to me on our visits. She would take the time to personally call me about my blood work results and was thoughtful enough to even ask about my son by name. For those reasons, I trusted that she cared whether I would live a longer, happier life on this planet.

Then she relocated far away after her husband got a great new job. She passed me onto her colleague, whom she assured me is great. “Great” might just mean having a stellar academic reputation because—typical of a male doctor—he seems cold. But lately, he's been growing on me like a dish you learn to appreciate only after some time—like an “acquired taste”.

I’m considering a rheumatologist closer to home in the same hospital on the same floor as my present gynecologist. This rheumatologist is older—probably more experienced—and—even better in my opinion—an Ivy League graduate. The location is more convenient, but an older doctor is not always a good thing.... He might retire soon, just as my Ob/Gyn did the day right after I gave birth.

This has been a difficult decision for me. I am transitioning to a different medication, so I'm not so sure if this is a good time to switch doctors.

Should I give up my young, hotshot doctor for an older, more experienced one closer to home?

Sexy Diseases and Halle Berry

2008-05-08T12:11:00.009-04:00

On a recent visit, my rheumatologist actually took time to sit down with me. The problem is, we spoke long enough to scare the hell out of me into getting off prednisone sooner and taking a more effective drug.

He said the high doses I have been taking could cause osteoporosis, bone thinning, blah-de-blah blah-de-blah... and diabetes. Hmmph, as if rheumatoid arthritis is not bad enough. So now I am trying harder to wean my 6-month-old baby so that I can take methotrexate.

I expressed the shame I felt about my disease:

Me: It's a shameful thing to have.

Doc: Why?!

Me: Because my own immune system is attacking my body.

Doc: Diabetes is an autoimmune disease too. Do you know that?

—I was speechless after he said that. There's no sense arguing with a doctor about something like that. Besides, I had a Homer Simpson moment, and all I could think about was Halle Berry....

Halle Berry has diabetes.... She is hot.... If only I looked as hot... then maybe having RA wouldn’t be as bad....

Like Lilies of the Field

2008-05-08T11:12:00.004-04:00

My name is Elena and I'm 37 years old. I was diagnosed with rheumatoid arthritis when I was 33, and this is my blog about living with the disease.

I’m scared. I’m scared of chronic pain. I’m scared of taking medications. Forever. I’m scared of side effects. Thoughts like “Am I really more likely to get a heart attack? Or lymphoma? How aggressive will it get? Will I always have insurance?” linger in my head. I cry a lot. I’m impatient. I want answers.

Then I try to remember the lilies of the field, to not worry about tomorrow, and to keep my faith strong. I need to slow down, to remind myself to take things slowly, and to enjoy life one day at a time.

Consider the words of Jesus in His Sermon on the Mount encouraging us to forget our worldly needs:

“Why take ye thought for raiment [clothing]? Consider the lilies of the field, how they grow; they toil not, neither do they spin.

And yet I say unto you that even Solomon in all his glory was not arrayed like one of these.”