treatment post #4

Time: 11:23 PM.
Current mood: miffed.

I didn't get the IV infusion done today because my skin test showed a positive result for TB exposure. In terms of respiratory health, this means virtually nothing, since 90-99% of Filipinos are TB exposure positive. But this makes all the difference for me in my arthritis treatment, because now Dr. Ong says I need clearance from a pulmonologist before I can start my infusion. Which will take around 1-6 months. I'll elaborate more in the morning. I came here just to vent.

I've been achy lately. Usually it's just my elbows that are in pain, but today and yesterday it's been hurting everywhere. Elbows, knees, wrists, ankles, even jaw. They all hurt not so severely, but the fact that they're simultaneously causing me pain just adds a whole new layer of ache.

So I guess I'm feeling extra cranky and tired tonight. I find myself getting inwardly upset over all the things I usually just ignore, like the mess in my room and the scratchy feeling of my palms and the orangeness of pajama top. The patch of skin where I got my skin test is itching. My pillow feels too flat. My mouth feels too dry. Everything is infuriating me.

And it's a thought that has stayed with me since I woke up. I don't feel comfortable in my skin anymore. It hurts to simply let my arms dangle from my shoulders. It hurts to shampoo my hair or put on pants. It hurts to pick up my cellphone and hold it to my ear. Every little thing is causing me misery. I'm so frustrated.

And what frustrates me the most is that the treatment will take soooooooooo long. I can't bear to wait another day, what more a month (or six)!

Blargh. That's it. I'm going to sleep. See you in the morning, folks.

posted from Bloggeroid

Look ma, no side effects!

I was bracing for impact last Saturday, expecting the side effects of methotrexate to incapacitate me for some twenty four hours. But nothing happened, thank God. I felt the same as any other day - achy in the elbows, springy everywhere else. It was fine. I did feel a little sleepier than normal, but that feeling went away around lunchtime.

Feeling fine and dandy, I was able to attend Rap's condo blessing. Some Health Sci friends were there and it was nice being with them again.



(Oh, he's still looking for one more roommate. His condo in the Ortigas area, near Robinson's Galleria. Rent is 8k a month, with a lot of awesome freebies that come with the deal! Let me know if you're interested!)

Afterwards, Rap's mom took us to Greenhills. Jeth needed to get his phone back, and I needed to go buy some extra strong Vitamin D3 capsules, as prescribed by my doctor. So Tita Tet took us to this store in V-Mall that sold imported goods, and when I found what I needed, she was able to haggle the price from 1,200 pesos to only 800! Man, I'm so thankful. This is what I bought:



Yes, I have a Vitamin D deficiency. My dad says it's probably because I'm indoors too often, but I think I get out plenty. He said I should expose myself more to the sun. I feel like a plant.

. . .

Yesterday, I went in for my skin test reading. Rap was with me again. We took a jeep from Robinsons Galleria to Medical City for the first time, and now we know how to commute to ASMPH.



At Medical City, the doctor just made some pen marks around the small circle in my skin, measured it with a ruler, and then wiped it off. (After all the effort I put into keeping it on me!) They didn't charge me for the reading anymore. Phew.

Then we walked to a Family Mart nearby to get some ice cream, and along the way we found some sort of racing event. Well, it wasn't exactly racing. Basta. A road was closed off and people were riding all sorts of wheeled vehicles on it. There were bikes, skateboards, scooters, pedicabs, and this thing.



We rented two and pedalled like the wind.

posted from Bloggeroid

treatment post #3

I'm pretty tired, so this will be very short. Rap and I went to ASMPH earlier to submit some last-minute confirmation documents, and because it was conveniently nearby, I got my PPD skin test done at Medical City. It cost me around P550.










Prior to today I did not know that a PPD skin test meant injecting something beneath my skin and drawing a circle around the swelling in pen ink. I still have to go back twice so that they can get two "readings." Until then, I should take care not to soak that arm, lest the pen ink wash off.

Today was my first day on metothrexate, and I'm preparing myself to be bogged down in bed all day tomorrow because of the side effects. I'm not feeling anything now (aside from tiredness) but they'll kick in by tomorrow. I partially wish that I wasn't informed of the side effects of the treatment, because now I'll be expecting them, and of course because I'm expecting them, they'll probably come.

Anyway. Thanks to everybody who's been showing me love and support! I really really appreciate it.

Now to get some much needed rest. Gute nacht.

posted from Bloggeroid

treatment post #2

(Still can't think of a better name for this series)

I went for my second visit to Dr. Ong yesterday at Cardinal Santos. She's the rheumatologist I keep mentioning. In the waiting room I was greeted again by her loyal patient, a Miss Lourdes.

She's roughly 80 years old and walks with a cane. She has arthritis, too, and she prefers natural medicine over commercially sold drugs. I know all this because during my first visit last week, we had a really long chat about life as an arthritis patient.

She had probably been surprised to see a person my age at a rheumatologist's waiting room, so she had asked me what my sickness was. That kind of spurred a conversation that literally lasted for hours, with her doing most of the talking of course. She gave me all sorts of pointers, like how oranges makes the pain worse, how fish is the best, etc etc.

Okay anyway, she was present again yesterday, and we sort of compared notes. What did Doc Ong tell you last week? How have you been? Apparently she went to Subic for the Holy Week.

Then another old lady showed up asked me the same questions Miss Lourdes did. Why are you here? Nako, ang bata bata mo pa, may arthritis ka na... Man, some old ladies really love to talk. I mostly don't mind. I like to listen, anyway. Old Lady #2 is really into God and stuff. She even showed me this book she got called "How the Bible can Heal your Arthritis." How oddly specific.

Anyway, when finally it was my turn (aftern seeing a lot more old people in the waiting room), the Dr. Ong checked out the results of my lab tests and said that everything was okay. I mean, my eosinophil and neutrophil counts are high and my Vitamin D3 levels are low, but all of that is normal in an arthritis patient. All of that indicate inflammatory action, which of course is what's going on in my joints.

She said that it was okay because my creatinine and SGPT levels were normal, which meant that we could proceed with the standard treatment: three methotrexate tablets, taken thrice a day on one day of the week.

The common side effects of methotrexate include nausea, headaches, colds, flu-like symptoms, muscle aches, and diarrhoea. Since they take a day to manifest, I should take methotrexate on a Friday so that it won't disturb any school activities I may have. Which probably means I'll be spending my Saturdays bogged down in bed.

I was also told that I can start on my other treatment, a biologic agent called actemra, next Tuesday. Actemra is drug administered through an IV infusion. The infusion will take about two hours, and I'll get it at UST.

The infusion typically costs 39,000 pesos. But since it's my first dose, I get to buy it for 19,824. Yeah, it's really not cheap. Hayayayay.

Tomorrow I'll be finishing up with my baseline tests. I just have to get a PPD skin test since I already did my chest X-ray earlier.

Hayyyy. Expenses, expenses. Thinking about how expensive the treatment is, compounded with the costs of med school, always makes me despair. Sometimes I despair enough to want to call off the treatmenr altogether. But in those dark moments, I remember Rap telling me that this is one of those times when I need to let myself be loved. It's actually pretty hard, letting other people care for you, but sometimes you just have to let them love you. I deserve it. You deserve it.

Oh, and this is a picture of Miss Lourdes. I tried to be as discreet as possible when taking it.

posted from Bloggeroid

treatment post #1

Lookie, I'm blogging from Android! So cool. Finally, I can blog while lying down (isn't that The Dream?). However, because I'm not using a keyboard, it isn't as easy as blogging on a laptop. I also make a lot more typos on a keypad. But I get the extra benefit of being able to write on the go. And I can just directly upload pics from my tablet instead of first bluetoothing them to my laptop. So I guess I'll be using this technology for making short, quick posts like this one. Technology is wonderful.

Anyway. Today Rap took me to HealthDev, a lab/clinic in Ateneo, so that I could get to work on those lab tests I need for my treatment (for my rheumatoid arthritis). Since the clinic is just on campus, we dropped Caitlin off at school along the way. Sadly, HealthDev didn't do serum Vitamin D assays, a blood test that I needed to have, so we had to go elsewhere.

We drove to LabWorks upon his mom's suggestion and then I got the tests I needed done in less than thirty minutes. It wasn't cheap (it cost almost four thousand pesos on the blood tests + urinalysis) but I think it's cheaper compared to other labs.

I still have to do other tests like a chest X-ray and a PPD skin test, but those will come after my meeting with my rheumatologist on Wednesday.

I'm bummed at all the expenses but I know (and my parents know too) that my good health will be worth it. Christiaan Barnard, the surgeon who performed the first successful heart transplant, had to retire from his medical career because his rheumatoid arthritis prevented him from being able to move his hands properly. I need to take aggressive treatment now so that I don't end up like him.

Anyway, I think this post will be the first in a series of posts documenting my treatment process. I've blogged about my condition before, but mostly just as an afterthought. Now I want to show people what it's like to receive treatment for it. I know I'm pretty young for an arthritis patient, and most online arthritis websites cater to helping out oldies with RA. Well, I'm 20 years old and diagnosed with rheumatoid arthritis, and this is what it's like. Now to come up with a catchy name for the series...



(As an afterthought: I have old clothes that I want to get rid off before I move to Ortigas for med school. Do you know any institutions that would take them off my hands?)

posted from Bloggeroid

Maundy Thursday / anniversary number three

I think yesterday marks the first time that my sister and I have ever spent Holy Week away from home. (It also marked my three-year anniversary with Rap, but more on that later.)

Sort of spontaneously, Cait and I decided to get these tattoos. Guess which wrists are mine.

We drew these on ourselves using a cone of henna ink that I stumbled upon in Little India during our visit to Singapore. I'm so glad we bought it! It was three for ten Singaporean dollah, so that translates to about P106 each cone. Considering that there's still a lot of ink left, I'd say it's a pretty good deal. Here's what it looks like:

Like I said, it was my third anniversary with Rap that day. Unfortunately for us, it happened to fall on Maundy Thursday, so most of the restaurants around the city were closed. We ended up spending our anniversary evening at a crowded Jamba Juice down by Serendra.

But before that, while we were walking around, Rap presented to me his "special surprise" from Korea:

It's a stamp, with The Little Prince on the side. At the bottom:

"Doctor Aimee" in Korean. (I'm holding it sideways in the picture.) It looks like this when stamped:

Really, how awesome is that!?! And when he gave it to me, he recited to me a passage from The Little Prince, the one where the prince is talking about his rose. Sighhhh. I teared up. (Okay this is a very condensed version of the events of that night. I'm writing as little as possible because I have to go get lunch soon!)

It's a really wonderful present. I'm pretty excited to buy a red stamp pad and just go stamp-crazy all over everything I own. Thank you, Rap!

Anyway, enough mushiness. I went to the rheumatologist the other day, and the results were kind of bad. She used an ultrasound on my elbows and knuckles and found some signs of early bone erosion. So we have to do aggressive treatment from now on, which will primarily consist of IV infusions once a month, in addition to strong painkillers and this capsule called methotrexate. Dear God, all of this is really, really expensive. But I'm really happy to be receiving a lot of encouragement and support from the people around me. I'm more than ready to say goodbye to my stupid painful flare-ups before med school starts. Bye, arthritis! 

Singapore Day 2

Our agenda for this day: Universal Studios! Typically, the way to get to Universal is in a cable car that goes from Singapore to Sentosa Island. But that would've cost around 30 dollahs per person, and we were on a budget. So we took the cheaper alternative, the monorail. I think it was a 6-dollah trip, and that already included the return trip!  

The view from the train. You can see the cable cars, they look like tiny little dots. Hah. Those suckers paid twenty six bucks to see the same view that we did! 

The monorail stops first at Resarth World and then goes on to two more stops. You have to alight here to get to Universal Studios. Anyway! Everything looked sweet and yummy...

...Including me. Nyehehehe. (But that, my dear children, is considered cannibalism, and is frowned upon by most societies.)

When you get to Universal, the first thing you do is take a picture with the famed Universal Studios globe.

 But of course you have to wait until the area is cleared of TSBG - tao sa background - before you can really get a good shot.

I think this was supposed to be a hold-the-world-in-your-arms shot. And a jump shot. At the same time. Obviously a bad combination. *cue: When you try your best but you don't succeed...*

This guy selling minion jugs at the entrance was being so sad, and dad felt compelled to point it out. Hence this picture. Which mom also photobombed.

A lot of the photos we took this day (perhaps all, even) involves one of our family members standing in the foreground and smiling while something pretty is going on in the background. If it were up to me, I'd just be taking pictures of the pretty things in the background (sorry but honestly, seeing the same group of people with the same smiling expression on their faces in each picture can get a little boring). Anyway, I've made do.

Madagascar was our first ride. I loved it! Great for kids (and grown-ups like me who are biding their time until their daredevil sister forces them to ride the big scary roller coaster).

Far Far Away came next. My family loves Shrek (well, the first two movies anyway), so we were really excited for this area. 

 Love the authenticity and attention to detail everywhere. There's one hall filled with posters of Prince Charming!

Like I said, attention to detail! Even the trash cans have the Far Far Away seal on them. (FFAPS - Far Far Away Police Society?)

Next up: Waterworld. I haven't seen the movie yet, but the show was entertaining nonetheless. 

 Rusty metal sheets everywhere. Universal Studios sure went to a lot of trouble to make the place look like the Philippines. 

Back in Far Far Away for lunch. We had fried chicken, mashed potatoes, and hot buns. They didn't serve rice, but they did have giant soda. 

Next: Ancient Egypt! I think this was the most beautiful area of all. 

 

At the intersection of Ancient Egpyt and Sci Fi City. I think the buildings in the back are from Hollywood. 

Fortunately for me, this thing was closed on that day (and it was actually shut down for good some two days later!) so I didn't have to ride it! Woohoo! (Brief background: I am deathly afraid of roller coasters.) Cait was very disappointed though. 

 Finally, a decent photo of you. 

 In the Transformers ride. It looked like a nuclear facility, if I had ever seen one. 

 You got to push a lot of buttons that didn't do anything! And the ride was really really fun but I'm not gonna talk about it because I don't want to spoil it. 

Next: New York!!!

 New York is one of my dream destinations. I desperately want to go visit 30 Rock, ice skate at the Rockefeller Center, eat New York hotdogs, check out the public library... Blargh. I want to go to there. Anyway, the New York area was probably my favorite stop at Universal, just because it's the closest I've ever been to the real New York. 

^ This sign was actually for a restroom. 

A show came on later, featuring a dance troupe called the Rockafellaz. 

 Cookie Monster driving a school bus. OMG. I love New York (but am also terrified by the prospects of getting into a bus being driven by a puppet).

(Baliktad man ang map, mom!)

 My brother's instinctive reaction to when he sees his crush approaching.

 Lovely parents.

 Char lang, dad.

Waffle break. Back at Ancient Egypt.

Since we were back in Egypt, my dad somehow conjured up the bravado to go ride the Revenge of the Mummy, an indoor high-speed roller coaster. And he's terrified of heights! Anyway, since he and my sister were so game, I was peer-pressured into riding it too. And I'm glad that I was, because it was really fun (despite my stomach doing sommersaults the whole time). 

 HAHAHAHHAHAHAHAHAHAHAHAHAHA. Kills me every time. 

That was the end of our Universal adventure. We took the train back to the hotel and rested up for a bit. Even though we were feeling super tired, we kind of had to force ourselves to head back out for the Night Safari, which we had already paid for when we arrived at Changi Airport.

Man, the commute was so long. And so draining. We took several trains, walked across so many platforms, waited so long for a bus... We even kind of skipped dinner because our schedule was so tight (it was already 10:00 and the safari closed at 12).

It was still fun though! Because we were so tired, we didn't have much pictures to show for the night. I would've wanted to snap pics of the animals we saw, but our camera's light settings wouldn't permit it. Well, anyway.

Man, that was exhausting. Blogging, I mean. Not the actual trip (but that was exhausting too). I started on this thing at around 10 in the morning and here I am typing up this last bit at 10 at night! It's picking out the pictures, editing them, and uploading them that takes up so much time. 

Tomorrow Rap is coming back from Korea! Maybe he'll get around to posting a travel entry on his blog about the trip soon. Or maybe my mentioning it here will pressure him to. Hooray for pressuring other people!

Today was Cait's first day of classes at Ateneo and already she's complaining about the homework and the fact that there's gonna be a quiz on Wednesday. Heh. I love having no more school. Also, she had her first Philosophy class today, and she said it really weirded her out. I remember feeling the same about my first Philo, too. We talked about Wonder and why it's so important to life. Hay, Philo really is weird. But it gets awesome pretty soon. 

Coming up next: Singapore Part 3. Tschüss!