Science and People

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?

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:

1. 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.
2. 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.
3. More than one-third of people with rheumatoid arthritis have a high ANA titer.
4. Almost all people with SLE have a high ANA titer.
   
5. 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

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

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:

• Green Tea Compound EGCG May Turn Off Chain Reaction of Inflammation, Joint Damage in RA
• Turmeric Prevents Experimental Rheumatoid Arthritis, Bone Loss

Hydrangeas

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

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

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