I am back at work after a four-day holiday weekend. We drove down Wednesday evening to visit my aunt and uncle and overall had a wonderful trip, although it did not start out auspiciously. The weather had been foggy and overcast for most of the week, so we weren’t terribly surprised when things devolved into a steady rain. Unfortunately, the combination of cold, damp, and air pressure had me in a fairly miserable place. And thereby provided the first thing that I am thankful for: my husband doesn’t mind driving. I was out cold almost as soon as we slipped into the car thanks to a heavy-duty decongestant. Three hours later I woke up just in time for us to navigate the backstreets to our destination.

The second item I am thankful for is my relationship with my family. Despite the distances that separated us while I was growing up, I am close to my aunt and uncle, two people who I respect and admire enormously. My uncle (my mother’s brother) was an archaeologist and museum curator, and visiting his digs was fascinating when I was younger and inspired my interest in Native American culture later in life. My aunt was paralyzed in a car accident when she was 20, but has always been extremely active, accomplishing more from a wheelchair than almost anyone else I know. I remember envying her long, black hair when it began to turn to silver streaks, and almost crying when I learned that we were not related by blood so I would not inherit her hair colour. As I’ve grown they have become more than just family- they are friends and I cherish that relationship deeply. My aunt has been an inspiration as I struggle with my own health challenges, reminding me of how much I can still accomplish.

The cool, rainy weather kept us all in more than we had intended, and my third item for thankfulness is my reheatable mitts- they helped me get through a couple rough days so I could enjoy visiting and focus on family. We spent all of Thursday cooking and I was able to help more than I first thought, and then we ate ourselves into a delicious coma, to the point of saving dessert for the next day. I spent a good bit of time on the phone with various family members (we’re a wide-scattered bunch), catching up and planning our visit to my parents at Christmas.

Friday dawned clear but very cool, so we spent much of the day recuperating. In the afternoon we went to the local museum where a photography exhibition of Florida wetlands was going on. We got there with one hour to spare so it was a little rushed, but we managed to find a birthday gift and a holiday gift for one of the nephews in the gift shop on the way out. We drove out to the local wildlife preserve to watch the sun set and made plans for our next visit. I would very much like to hike out to the observation tower next time when the weather is warmer.

Saturday we said our goodbyes and drove around the bay to see a friend for lunch. She was meeting a few folks from an online social group and they turned out to be a fun bunch full of stories. We ate fresh seafood down on the dock (literally next to the boat that had brought in the day’s catch), and then made a short trip to view a sand castle contest down on the beach. The weather had warmed up and I was basking- for all that I live in Florida I only get near the ocean once or twice a year and I’d really like to do that more often. I had fun picking up a few shells and watched a rather confused shark swim by, giving the people on the beach a thrill. It really was a wonderful visit, and once again I am thankful for friends old and new, good weather, and a husband who is patient with my distraction by pretty shells.

We had originally thought of calling on a few other friends, but by then we were feeling the sun and headed home. We made good time and picked up a pizza on the way so we wouldn’t have to cook. We unpacked and appeased the cats, then spent some time catching up on the Internet and our online game. It was a wonderful trip, but I was grateful to be home and in my own bed.

Sunday I slipped out the door early to stop by the craft store to pick up one or two items needed to finish up a couple gifts. I swung by Starbucks and got my snoot on by sipping a chai latte, nibbling on a slice of pumpkin loaf and reading a book (never mind that it was science fiction). I still got to the store a little early, so I read outside until the doors opened. I found the trims I needed, picked up a couple new loaf pans to replace the one that disappeared and my very old, rusty pan, and waffled over a few “Learn to Knit” kits for myself. Neither were quite what I am looking for, and I realized that I should wait until after the holiday anyway, lest I end up with more than one. The rest of the day was fairly quiet, reading, working on crafts, and cuddling the cats. In all, it was a truly, thanks-filled holiday.

“My health may fail, and my spirit may grow weak, but God remains the strength of my heart: he is mine forever.” Psalm 73:26

I hope that everyone had a wonderful Thanksgiving holiday. My oldest came home from college and we were joined by a few friends from church. Other than the 18 hours of cooking over two days, it was a pretty relaxing affair. The highlights are the pumpkin, pecan, and sweet potato pies. But for some reason, everyone but me takes a special liking to the pumpkin torte that my wife makes.

I’m taking a break from the RA Weapons series to discuss how RA causes adjustments in expectations.

On Friday after Thanksgiving, the Christmas lights were installed on the house. It’s a fairly straightforward task being that the design hasn’t changed in five years and three children joined in to help. After the lights were up, the snowboards and skis were pulled down from storage for adjustments, tuning, and waxing. The kids learned to wax their own equipment. It’s fun to watch the kids embrace this lifelong sport. There are numerous mountains within an hour or so that have wonderful ski runs.

waxing skis http://www.flickr.com/photos/a2c_s_1980/

After the few hours on these responsibilities, the body made it clear that it had enough. The next couple of days resulted in much rest and joint pain. And of course, the ski/snowboard work got me thinking about how realistic (or unrealistic) my expectations are for future activities. Of all physical activities, snow skiing ranks the highest for me. My skis were waxed the other day but I have no idea if/when skiing will be a reality. But the time will come very soon when we’ll load up the equipment and head to the slopes. I’ll try to ski but my expectations are quite low at the time given the fact that a simple job of hanging Christmas lights kicked me pretty hard. Fellow RA bloggers Terry and Kelly recently spoke about how RA caused them to adjust their expectations for life activities.

This leads to a broader reflection on changes in expectations as RA takes a toll and medication changes are tried. In October, my doctor switched me from Enbrel to Cimzia. The last monthly dose of Cimzia was injected on November 4^th. The next injection is scheduled for this Wednesday. This will be the 3^rd injection since switching over from Enbrel.

Fellow bloggers Terry, Kelly, and I are in the process of trying new medications and we all seem to be attempting to come to grips about what to expect in terms of effectiveness. All three of us can point to a time when we were completely off major medications and can attest to the fact that symptoms were worse during those periods than we were on the “ineffective” previously used meds. But what can we expect with the new medications? In order help track impact and attempt to answer this question, I decided to keep a daily journal of RA symptoms starting in early November. This journal will be taken to my upcoming rheumatologist appointment.

In addition to listing specific symptoms, I created a scale of 1-10 for both energy level and overall joint health. Overall joint health included pain, stiffness, and swelling. A high number is positive and a low number is negative. I also tracked the number of days with headaches since I suspect Cimzia was causing these regularly. A simple spreadsheet was used to track the daily scores. A graph (see below) was produced to display a pattern over time.

The first thing I noticed was that everyday seems to be different. The second pattern is that energy and joint health appears to be related. And finally, there is a slight downward trend over the month since taking the Cimzia injection. This is not surprising since the effects wear off over time. The expectation is that the upcoming injection will bring some relief (and maybe more headaches). Relief is my hope.

I’m considering creating some sort of tracking tool based on this process so that RA patients can easily track changes over time. Feedback from readers would be appreciated. You can contact me via email or leave a comment on the blog.

Will Cimzia work long term? Will snow skiing be in store? These are questions that can’t be answered right now and expectations must be tempered.

Finalzinho de domingo com o novo super mario.

E bom comeco de semana pra cogo mungo!

OBS: Ideia do Haag.

Olha ai onde o zé bunitinho aprendeu, tanto tempo jogando basquete alguma coisa ele aprendeu e muito bem por sinal, não?

Iara Jamra é uma daquelas pessoas que não tem como ‘não ir com a cara’. Embora já tenha entrado nos ‘-enta’ há alguns anos, o rosto de menina ainda é marcante nela. O que ainda ficou melhor quando ela abriu a porta e disse “Oi” com a voz fiel da Nina.

Tem pouco mais de um mês que entrevistamos a Nina, ou a Iara. Fazia muito calor naquele dia. A idéia de que a casa dela era perto do metrô Vila Madalena nos fez levou a uma caminhada que pareceu durar mais de meia hora.

Quem nos recepcionou ainda melhor foi a Xica, a vira-lata mais fofa e graciosa. Sem dúvida ela leva o prêmio de ‘pet do ano’ entre os entrevistados.

Relíquias

O mais legal foi ver que Iara ainda guarda o pente da Nina e muitas fotos e recordações daquela época.

A casa dela é cheia de quadros de alunos, de peças que ela fez quando ainda existia o Pod Minoga e os telefones dos amigos daquela época.

No fim, uma entrevista que parecia difícil – pela pouca memória da atriz – foi uma das que deixou mais recordações, digamos, engraçadas. E o melhor, nos rendeu mais uma relíquia.

Foi Iara quem escreveu a Carta ao Leitor do almanaque. Uma carta cheia de carinho, tanto pela época quanto por o que o programa significa hoje. Imperdível.

Carona

Depois de insistir muito que ela nos deixasse em algum barzinho do bairro, convencemos Iara a simplesmente nos deixar no Metrô. O que já foi de grande bondade. Já passava das 22h e a gente ainda não tinha esquecido o que tinha andado até chegar ao prédio dela.

A próxima vítima…

Raul Barreto. Uma entrevista tão rápida quanto o ‘pit-stop’ da F-1. Em breve!!

Invoking the many names of God or seemingly enchanting and innocuous names like the “Children of the Law of One,” “Rainbow Children,” and “Universal Law” do not make a belief or way of life more true than it was before these names were used. Material upon material is written. Books claiming to give guidance are plentiful. Some claim to be the journey of the author and others are material that have been passed down from person to person as if it were some right of passage. Still yet, others are claimed to have been channeled by spirits long gone, and claiming to be this or that. Man need not titles. Spirit need not titles. Whether priest, or scientist, monk or politician, teacher, or ascended master, they are all useless monikers. You cannot preach the truth and then claim to be someone’s teacher or the leader of some group, named or unnamed. No one’s path is greater than the other. No one’s way is brighter than the other.

Who are you, that you should claim to be the mouth piece of God? Cannot God speak on His own, through the love and guidance He gives to each one of us? Does God need to defend His claim before men who have bastardized the truth? Surely if God is God, He would have no need for justification? We are all of His creation. There is no shortcut to love. There is no shortcut to understanding. All that you need is before you. Look and He is there. Close your eyes and He is there. Listen and He is there.

Un video pe care l-am văzut (incomplet, din nefericire, damn hosting services) mi-a reamintit despre timpurile mele mai vechi în care aveam unele idei despre creştinism. La început nu credeam, dar apoi am aflat că într-adevăr se roagă la un Zeu: la Soare. Da, soarele de pe cer. Cum am ajuns la ideea aceasta? Simplu: Împăratul Constantin. Pentru cine nu ştie, el este “băiatul” care a adus creştinismul ca religie unică în stat, asta după unele acţiuni mult prea neconvenţionate:

- în primul rând, este bine cunoscut că a adus multe “sărbători” din alte credinţe în “creştinismul lui

- apoi, a făcut asta după ce a primit un “semn în vis” de la “Dumnezeu” să folosească crucea creştină într-un război pe care l-a câştigat. Asta implică mult prea multe probleme, poate una din cele mai minore fiind că Ioana d’Arc, recunoscută mult mai mult în prezent ca primind putere şi semne de la Dumnezeu, a fost acuzată de înţelegeri cu necuratul şi executată pentru asta, pe când un Împărat roman (imperiu care oricum nu i-a mai rezistat mult) poate avea vise de la oricine (putea fi şi un demon sau inspiraţie demonică, deşi este convingerea mea că nu acesta a fost cazul), poate introduce un element NOU în “creştinism” (crucea) şi nimeni nu bănuieşte nimic suspect.

Da, aţi citit bine. Crucea nu exista ca element de rugăciune până după 300 de ani de la crucificarea lui Iisus. IISUS NU A FOLOSIT NICIODATĂ CRUCEA SĂ SE ROAGE, NICI NU A SPUS ASTA UCENICILOR SĂI. CRUCEA A FOST INTRODUSĂ LA PESTE 300 DE ANI DE LA MOARTEA LUI IISUS. Puteţi căuta asta oriunde, puteţi întreba la ora de religie. Chiar sunt curios de răspunsuri Cum au putut să încredinţeze clericii timpurile acelora întreaga lor religie pe baza unor viziuni cu sursă neverificabilă a unui împărat complet laic?

Acest zeu a avut mai multe nume în trecut, cel mai proeminent a fost Ra în egiptul antic. Vă întrebaţi ce vrea? Exact ce doreau Ori în Stargate: oameni care nu vor “ascende” niciodată (sau nu prea curând, sau nu cu ajutorul lui oricum), fiindcă are nevoie de cât mai mulţi să se roage în templele LUI, nu ale lui Dumnezeu pentru energie. Şi asta înseamnă că nu vrea să schimbe nimic. Şi când totul stagnează, ajunge la un moment dat să dea în urmă…

Following on from my big adventure to Barcelona earlier in the year, I’m off to Wales for the weekend. It’s going to take substantially longer to get there than it did to get to Barcelona. I’m going by train and I’m rather dreading the journey.

Fortunately Maggie, she of the occasional comments on this blog and provider of the link to the real life chocolate pizza, is putting me up for a night on the way there, so that breaks the journey a bit, but next week I shall be coming home from Wales in one feel swoop.

On the train I’ll be able to get up and stretch my legs now and then, and I might even be able to sleep for part of it, so it has advantages over car travel from an R.A. point of view. Hopefully I won’t get too madly stiff. What I’m worried about is the fact that I have a total of ten trains to catch in the next five days, excluding London Underground links which are the biggest pain of all, and the British train service is notoriously unreliable … to put it politely. Combine that with severe weather warnings across the south of England (I have to travel through London both ways), and it could be an ‘interesting’ weekend.

At least I’m looking forward to seeing Maggie and family and my friends in Wales. Pity that all their Christmas presents are due to arrive in the post to me at work today, and I’m not going into work – I didn’t time that very well!

Chokladkakor från det brittiska företaget Nakd är så goda, kompakta och mättande att de nästan kan ersätta en hel måltid. Innehåller inget tillsatt socker, mjöl, mjölkprodukter eller genmodifierade sädesslag. Däremot består den av råa och obehandlade dadlar, russin, jordnötter, mandlar, valnötter samt kakao och äppeljuice. Otroligt goda och på grund av sina rena ingredienser kanske till och med värd priset. Lite under 40 kronor får du betala för 68 gram av en Cocoa Loco Nakd bar.

Jag köpte chokladkakan på Naturgott i Kristianstad men letar du efter ett köpställe närmare dig får du kontakta Swift Export som marknadsför Nakd’s kakor i Sverige.

It’s awfully lonely here without the rest of the suite. I’ve always counted on Kevin being here, and Shang. But I think I might have almost cried when Kevin left with his suite case. I finally finished my RA at 2 in the morning. I asked people to wake me up from Kevin’s bed at 11, but I woke up to Shang shaking me at 11:34? Apparently everyone’s tried to wake me up at 5-minute intervals, and when Susan came in, I was rude and snored in her face. Great. I’m sorry, Susan. I asked Hassan for more help, sucked it up, and did it. I set my alarm for 9:30 the next morning and woke up a little before 7, then again at 8:30. I’ve never liked bio discussion. I went back to nap after I got back. Went to bio lecture, Brandywine with Kevin, Simon, Cecilia, Flo, Olivia, Owen where they served curly fries. Cecilia and Olivia were falling asleep in bio lecture. Then I went back to watch 101 Dalmatians and Lilo and Stitch and watched Shang, and then Kevin leave. It was really sad. I walked Kevin to the flagpoles and am thinking Shang might have taken my key by accident. It’s just Ana, Susan and me all alone in our suite. Thomas is staying for Thanksgiving, and I keep forgetting he’s from NorCal. We’re waiting for Melinda, my mom and dad to come pick us up at 8:30. It’s terribly lonely here, and we’re going to make a Facebook video for Kevin soon.

Madaleeena, ssê tá fazzenu erradu madaleeeeena isso aí é u pé da caaaaaaama madaleeeena!

Last night I had some trouble ordering Domino’s. The guy had an accent, they forgot I placed an order already, and they couldn’t understand me because I couldn’t understand them. Kevin was being distracting so I said “shut up!” into the phone, and immediately apologized to the man, and Kevin was laughing so hard and telling everyone else. Then the Domino’s guy was like Jennie Lim? I was all, no. My name’s actually Colleen. Kevin told everyone that too. It came an hour later, and I wasn’t too hungry, so I ate 2 mushrooms and one square of pepperoni. I took about an hour nap and finally started on my RA, which was assigned maybe 2 weeks ago. I mostly pulled an all-nighter, with a few minutes of naps inserted here and there. I skipped writing (fourth one) and the peer tutoring last night, and went to breakfast with Kevin and Simon, who carded me in. Breakfast is getting really repetitive and boring and drab. In return, they promised to come to chem lecture with me to wake me up when I fell asleep, which I knew I would, even though I looked really good for someone who didn’t sleep last night. I fell asleep twice. Protesters came into chem and Borovik lost his cool. He was yelling “No!” and apparently pushed some guy. It was awesome, because no one except for a guy and a girl got up.  Everyone was still seated and staring at the people, I felt kind of bad for them after because they should have known that a science lecture isn’t the place to go if they want students to get out of class. It’s much too competitive out there. Borovik is so awesome, he said “shame on you!” to some guy in the front. We applauded him. He looked tired and sat down all slumped and everything after. Then he totally scrutinized everyone who walked in late to his class. It made Kevin and Simon happy they were there. Simon carded me into dinner too, but it wasn’t too good. It never is anymore. Too many potatoes. I had to do some Green Campus intern meeting today too. 40 or so minutes of my life wasted. I am so not doing it again next quarter. I’m sad Thanksgiving weekend is coming again, because I’ll miss staying at school. But I’ll maybe see Melissa and Michelle and maybe Henry and Jenny and Steven again. But then Black Friday after, which will suck. At least I’ll get to see the SF guys leave, which probably won’t happen again, except maybe spring break or the end of the year. I’m sad for that already. It’s already Week 9. It seriously passed by too quickly. I’m DEpressed because a third of the year is almost already over. Shang and Bonnie just finished their hour-long game of Slapjack. My hand hurts, and I finished a long time ago. Which reminds me, Dustin and Kat were being nasty again. He really doesn’t hide it well. I love how me, Chris, Melinda gossip about these things!

Disclaimer: The Arthritis Foundation of  Western Pennsylvania always advises that you consult your doctor and take their advice. The essay below is a personal story of one young woman, and a humorous look at how living with arthritis or other chronic illness can affect one’s life in the most seemingly simple, or silly, ways. The AFWPA does not ever endorse ignoring any doctor’s advice….and the author now has to have another orthoscopic knee surgery as a consequence….as they say, beauty DOES come with a price! – AB

“No! Not the SHOES!” – by Ashley M. Boynes

Here’s the thing: in addition to Rheumatoid Arthritis and Celiac Disease, I suffer from a third disease. This condition is called “Chronic Shoe Lust.” Shoes are my sanctuary. And here’s my frustration: I don’t want to give up my cute shoes, even when my logic — and my doctor — tells me to. While they aren’t Manolos, Louboutins, or Jimmy Choos by any means, my closet is filled with pair after pair of (more affordable!) adorable, uncomfortable, and sometimes dangerous-looking shoes. I love them!

Sometimes, it is so hard to be reasonable. It can be especially difficult when you are 26 years old and have a seemingly endless list of rules to follow, what not to do, what not to eat, which medications to take, which supplements are helpful, when the next doctor’s appointment is, and so forth. Add in a pinch of human emotion and a dash of impulsion – and you’re surely bound to slip up here and there.

I have rheumatoid arthritis in ALL of my joints, but my right knee is a particular mess: I have a torn meniscus floating around, both RA and osteoarthritis, cartilage damage, bone spurs and calcium deposits. I’ve lost my full range of motion – my knee doesn’t fully straighten or bend – and it is constantly swollen.  It sometimes physically locks in a 90-degree angle. I have walked with a slight limp since the sixth grade. With no other choice, I’ve gotten used to my not-so-friendly knee and the pain it causes my whole right leg – from hip to ankle.

And this cranky knee? Along with my doctor and family members, it has chastised me time and time again for wearing kitten heels, stilettos, wedges, pointy-toed pumps and other variations of cute and fashionable shoes. These shoes hate me, though. My difficult knee has teamed up with said hip and foot to cause horrendous wear-and-tear to any pair of heels that I slide on to my feet, ruining the shoe by making the heel slanted and bent inward with no hope for repair. This sad display makes me unable to walk in them any further – but yet, as I consider fashion (especially shoes) an art – I do not have the heart to throw them away! That being said, however, I cannot imagine the damage being done to my joint if that is what occurs to each pair of shoes. Hmm…

Now, I AM a logical young woman. I follow my strict gluten-free diet, I take my pills on time, I take my vitamins and rarely miss a doctor’s appointment. I try to take care of myself, and try not to take on more than I can handle.

But I refuse to give up wearing cute shoes. Cute, painful, inconvenient, fabulous shoes!

I’m not sure why this is. I do enjoy the confidence-boost that I get when a stranger compliments me on a particularly stylish pair. It makes me feel good about myself, and I consider shoe-collecting almost a hobby. I know that, given my condition, the “reasonable” and “rational” thing to do is to wear flats, sneakers, or some sort of more “accommodating” shoes. Yet, I wear platform Mary Janes, open-toed kitten pumps, sandals with little-to-no support, and 4-inch stilettos…I just can’t help myself!

I know, I know. I’m “going to kill myself walking in those things.” It’s “no wonder” I limp. “Of course my knee is killing me — look at those shoes!” -  I’ve heard it all. But when I’m traipsing back to the parking garage at the end of the work day, I don’t feel so badly – because I’m joined by countless other women limping along, teetering on the edge of sanity with their sky-high heels. In that moment, I’m not alone.

Could this be why I torture myself with the heels? Maybe a part of me thinks it is easier to hide behind the guise of “it’s just the shoes,” rather than a chronic illness with no end in sight. It’s the blame game — and blaming a physical ail on having fashionable feet is much easier than the reality of the situation. I also think it’s my pride. I want to hold on to any sense of normalcy that I can, since sometimes my life isn’t exactly that of a “normal” 26-year-old. Do I have to give up something that, as silly as it is, makes me happy?

I know that I’m being stubborn, and I’m probably hurting my knee further, but here’s how I justify it: I’ve sacrificed enough. I have given up pizza, beer, “regular” baked goods, my beloved Twizzlers, and, really, any sense of being carefree. I’ve sacrificed sports. I’ve sacrificed nights out with friends. Isn’t it OK to be stubborn just this once?

I know there are far worse things that could happen in life – after all, they’re only shoes. But shoes are something I can control. The other things that bother me about chronic illness are things that I might not be able to change, ever, even if I want to. So forgive me for wanting to hold on to my shoes. After all, I need to be well-heeled while I take the steps to kick these symptoms!

What do you think, reader? What have you sacrificed because of a health condition — trivial, or serious? Do you ever “cheat” and stray from what your doctor says, like I do with my shoes?  As always, I want to hear your comments…and I’m sure I’ll be blogging before and after the surgery that my unfortunate shoe habit has, in part, led me to have to schedule. Have a Happy Thanksgiving from all of us at the AFWPA, and we hope you enjoy reading our blogs as much as we like writing them! We are “thankful” to have you as readers and as supporters of our chapter as we fight to spread awareness about arthritis and to provide a community of support for anyone suffering from one of the 117 types of arthritis & related illness! Again, comments are always welcomed and encouraged.

Be Well,

-Ashley Boynes

Community Development Director

Western Pennsylvania Chapter

voted, “Best Blogger in Pittsburgh!”

PS: Are RUNNING SHOES more your style? Be sure to sign up for our December 12th Jingle Bell Run/Walk! This 5K takes place in Pittsburgh’s North Shore and should be a fun time — all for a great cause!

An event during jury duty reminded me of a small issue that usually remains just under my radar: my medical bracelet. I have been wearing one now for over a year, and while I fiddle with it constantly, I’m not always conscious of it. There’s nothing like a metal detector to remind me.

I first started wearing a medical bracelet after a camping trip last summer. I was white water tubing with friends and had an asthma attack. Nothing serious, but I realized that if I had not been with people who knew me, I would have had no way to communicate what was happening. This also goes for my garlic allergy- if I have a bad reaction I can’t talk to tell a stranger what’s wrong. So I decided to get a medical bracelet to speak for me when I can’t speak for myself. This is also a handy way to carry my emergency contact information, my current medications and dosages, and all my doctors’ numbers.

There are some cons, however. I chose a bracelet that won’t slide off or come undone, and is comfortable enough to wear 24/7 so I don’t have to worry about losing or forgetting it. This means, however, that I can’t take it off by myself. When I recently had some x-rays done for my RA, I had both the lab technician and the nurse trying to get the darn thing off. And then, of course, I needed help getting it back on again. I do have a “sport” version which I can manage myself for travel or outdoor activities (you don’t want to wear a bracelet that can’t snap off when, oh say, snorkeling or something like that- that’s a nightmare waiting to happen right there), but I have to think about changing bracelets ahead of time, and I completely forgot about the metal detectors at the courthouse.

So, setting off the metal detector and having my bracelet pointed out to a group of strangers brought everything back into my awareness, like a grain of sand to an oyster it is an irritant just below the surface. There is a psychological factor in wearing your illness around your wrist- that you have a condition (or, as in my case, more than one) that requires immediate attention in case of an emergency. While it is an excellent safety feature and I often feel better for wearing it, I also resent it at times and all that it represents. I’m not ready to swap to the sport version full-time; I know I would be tempted to take it off more often and run the risk of forgetting to put it back on, thereby defeating the purpose of the thing in the first place. But there are times when I’d like to throw it across the room and pretend it doesn’t exist.

And partially this stems from how others react to it. I have two co-workers who wear medical jewelery for similar reasons, so it is not quite so foreign in the office. But when traveling or meeting new folks for the first time there are almost always questions and I have to explain, again, why I wear one.  Wearing the bracelet seems to invite strangers to ask me about my health, and some days (most days) I don’t want to think about it. Things were going so well, why do you have to bring *that* up? Luckily, the garlic allergy is unusual enough that it tends to capture the conversation and there is no reason to go forward, but sometimes people press, or I am feeling chatty, or I let something slip without being fully aware and the questions *really* start. But perhaps I’ll save that rant for another post. In all, it is another reason to resent wearing my conditions, literally, on my sleeve.

Flu shot today. Found out today that I was exposed to the swine flu a few weeks back, but not during the really contagious period. Good thing I didn’t get it. I practically ran from bio across the park, where I saw Anthony for a minute or so, to the bridge across from the Zot n’ Go. I would have slapped myself to pieces if the line had been really long, because we could have gone under the bridge right to the line. As it is, Susan and I waited for a total of about 12 minutes before we got our shots. We waited around a bit more because she was waiting for me and I was waiting for her at different places. Then I called Kevin and had some Wendy’s and Jamba. Next time, I’ll remember to get Caribbean Passion instead of Mango-a-go-go or some crap. It’s 3:23 now and I can finish my essay today, if I don’t fuck around like I usually do. Dinner at 5, and have my essay peer reviewed around 6 or so in Arkenstone. Hope the line won’t be too long, but I can always go to Langston Library if it is. And it was adorable last night when Kevin kept going on about cotton candy in his sleep when the guys were playing Dota like they were possessed. Kevin started playing today. We’re going to lose the Restaurant City Kevin we know so well! I learned how to move, but that game is still boring.

Trouxe um videozinho pra vocês hoje.. Cortesia de um amigo meu, que me apresentou ele..

Como eu não sei o nome dos personagens dessa obra maravilhosa de Deus de algum psicopata, chamaremos o nosso amiguinho curioso de Billy.

E um FFUU de minha autoria também.. (Não ia deixar essa oportunidade passar em branco né?)

Clique aqui para ver o FFUU

É, Billy.. Certas coisas não deveriam ser perguntadas…

We just finished shooting a Vamos episode in Houston and had a blast. This was our second Texas show in our Texas series. It had been a while since I had visited good ‘ole H-town and I was not disappointed. 

First, I set up a little one-on-one time for Vanessa with Houston’s Hockey team, the Aeros. Although Vanessa is nowhere near being a pro at ice skating, she actually did well…and yes, she had her first hockey fight with their enforcer Matt Kassian. You’ll have to catch the show to see who won that one. Thanks to the entire team but special thanks to Robert Desimone, Coach Troy Ward, and their other Left Wing Colton Gillies who had some pretty sweet figure skating moves (you’ll have to watch to see what I’m talking about).

Next, we stopped over at the famous Beer Can House, a house covered with 50,000 beers! It was pretty cool too, you should google it if you get a chance.

During our time in Houston we stayed at Hotel Sorella. I mention this because this was an impressive set up. The hotel is in the heart of the new district called CityCentre. Within that development you have entertainment, food, shopping, etc. Everything is just steps from the hotel, not to mention, the hotel has a pretty cool lounge and bar called Monnalisa which could have easily stood alone.  I loved Ra, a rock and roll type of sushi restaurant and the bar and restaurant right under the hotel, Straits, was great as well. Thanks to Stuart Rosenberg for making that happen!

All in all, a fun trip that I think you will enjoy watching.

Producer Luis

We’d intended to have a day trip up to Blakeney Point yesterday, on the north Norfolk coast. It’s an area of slightly bleak but beautiful marshland, famous for its bird-life and a sunsets, and a lovely place for a walk. Unfortunately it was pouring when I woke up, and I was as a stiff as a board and in pain, so pretty much my first thought on waking was, ‘We ain’t goin’ nowhere.’ My second thought was, ‘Then again … it is only half-past-five…’

In typical Polly Penguin doing the positive thing fashion I thought, ‘I’m sure if I go to sleep again I’ll be fine when I wake up, and so will the weather.’ I wasn’t. It wasn’t.

But gradually, with some TLC (and perhaps more importantly coffee) from hubby (and some TLC from middle-sized cat too) I started to thaw and bend, and the sun started to come out, so we thought we’d risk it and go.

I’m so glad we did, although our arrival and first few minutes were not auspicious. It’s quite a long drive so we felt the need to avail ourselves of the facilities and then top up on coffee, but although Blakeney is a famous beauty spot it is remarkably unspoiled. This is of course a GOOD THING … until you want coffee and a loo. I remembered seeing a big sign outside the King’s Arms saying ‘Kenco Coffee served here,’ so we trudged down, me still somewhat stiff and pained. There was a girl outside emptying bins who gave us a blank look and then ignored us. I eventually found the door, which didn’t look too inviting, went in and was me by a fellow giving me another blank stare. ‘Are you doing coffees?’ I asked. Blank stare. Then, ‘Nah, we don’t open ’til twelve.’ I pointed out that the big sign outside saying coffee was being served was, in that case a tad misleading. We walked out to the accompaniment of further blank stares.

Things got better after that. We decided to brave the Blakeney Hotel. Nothing outside to say they served coffee – it’s not the kind of place that has notices outside. Far too grand. In fact it’s not the kind of place that a pair of scruffs in walking boots and wellies felt all that comfortable about going in to, but we thought we’d risk it, especially as nobody really goes to Blakeney Point if they aren’t walking boot/wellie brigade. The charming receptionist said yes, they were serving coffees, and where would we like them? We chose the magnificent ’sun lounge’ looking over the marsh to the sea, and had a very enjoyable coffee there before heading off on our walk. Nicely thawed I felt able to tackle a short potter around on the marsh.

We did even have some sunshine! Then hubby said, quite unexpectedly, that he thought he’d treat me to lunch at the hotel! Yum! I’m sure that melon with lemon sorbet and a port syrup, followed by roast pork with all the trimmings and a rhubarb and ginger trifle would not be what the rheumy would recommend, but hey, it was a treat and it was absolutely delicious! Service was very good too on the whole, although there was some confusion regarding post lunch coffee. (Yes, I know, I drank too much coffee yesterday!) We got it in the end though, and it rounded off a lovely meal very nicely. We sat in the Sun Lounge again and watched the rain lashing down outside!

By sheer amazing luck we’d just decided we’d better wend our weary way when out came the sun again, so we didn’t even get wet walking to the car park. Did get this lovely shot of a boat against the stormy sky, with the sun catching it just right.

Then home past a lovely rainbow, and even got to see a barn owl drifting along in a field by the side of the road. One of my favourite birds and always a treat to see.

So a day with a very unpromising start certainly turned out to be full of promise after all. And talking of promise, hubby’s promising me one of his Hubby Special Shepherd’s Pies, so I need to go and eat it. (Although you’d think after yesterday’s lunch I wouldn’t need anything for a week!)-

The word ‘chi’ or ‘qi’ (pronounced as chee) means life-force and parallels the Indian yoga, Japanese, and African equivalents – kundalini, ki, and Ra respectively. Our life-force or life energy is a hidden intelligence that manages all our vital systems. From breathing, blinking, beating our hearts, digestion, to cell reproduction – it is this breath of life – our qi that sustains us as well as propels us.

The word ‘kung’ or ‘gong’ (pronounced as gung) translates to training or work. Together with qi it becomes the working or training of the life force. As Cohen puts it in the The Way of Qigong: the Art and Science of Chinese Energy Healing, “… learning how to control the flow and distribution of qi to improve the health and harmony of mind and body.”

Welcome to the way of energy cultivation and healing; not at all new but ancient and proven by our ancestors from the great civilizations of Asia and Africa for thousands of years. Qigong is well known for its stress releasing benefits and can also improve heart and blood pressure, the circulatory system, the digestive system, state of mind, the respiratory system, the immune system, and life longevity. Our organs are critical to this improvement process. Blockages and impurities hinder and outright stop the flow of qi in our organs and meridians, but qigong combats this blockage with healing sounds and flowing postures.

Nothing happens overnight, but with patience and dedication to the practice of qigong you can transform not only yourself, but also those around you.

Date & Time : Sat 28 Nov 2009 at 8.00 am

Meeting place : End of the World Cafe, Teluk Bahang

Contacts : Mr Hor Seng Nam ( 04-6448992 )

Mr Hwang Hong Shi  ( 016-4701273)

Trail to Muka Head from Teluk Bahang

Beautiful beach with clean, fine sand under a clear blue sky

Magnificent sunset mirrored in the crystal blue sea

The 115-year historical tower of the lighthouse

Breathtaking view from the top of the lighthouse ( pics by Timothy Tye )

The long school holidays are finally here!

Take a healthy break and join us with your children for this hike and picnic.

Have fun splashing & swimming in crystal blue sea and laze on the beautiful beach.

Encourage the spirit of adventure in your children and let them be awed

by the the world of Nature around them. Muka Head is a forest reserve

which probably has one of the best, unspoilt beaches in Penang – an ideal

getaway especially for hikers/campers. You can visit the lighthouse there.

Many children have never seen a real lighthouse, so entering and exploring

one will be exciting. The Muka Head lighthouse was built in 1883 at a cost

of 37,000.00 pounds. Erected atop a 240 meter (785 foot) cliff, the lighthouse

makes a dramatic marker to ships and sailors negotiating the northwestern

cape of the island. This 115-year tower is now treasured as a historical site.

It is still operational. Watch this You tube video of the lighthouse.

http://www.youtube.com/watch?v=PVDUT1-nGAY&feature=related

]]> http://livingwithra.wordpress.com/2009/11/23/chemical-weapons/ Mon, 23 Nov 2009 05:09:47 +0000 alumpe http://livingwithra.wordpress.com/2009/11/23/chemical-weapons/

“Chemical warfare (CW) involves using the toxic properties of chemical substances as weapons to kill, injure, or incapacitate an enemy.” Wikipedia[i]

http://en.wikipedia.org/wiki/File:WMD-chemical.svg

Many of the first medical treatments for RA were chemical drugs that were actually developed for other diseases. Disease-modifying anti-rheumatic drugs, or DMARDs, are the hallmark chemical treatments for RA.[ii] These chemicals attack or incapacitate the enemy of RA, inflammation, using various processes. Many of these processes are not fully understood by scientists but suppression of the immune system resulting in less inflammation is suspected.

Methotrexate, plaquenil, sulfasalazine, Arava, cyclosporine, Imuran, Cytoxan, and gold salts are commonly used to treat RA. All of these are rather simple chemicals in terms of design, development, and production. This also tends to make them less costly relatively speaking. In heavier doses, some of these drugs are used as chemotherapies for various cancers. Plaquenil is used to treat malaria. If you ever want to help the uninformed really understand the seriousness of RA, let them know that you are taking a chemotherapy drug! Because they are somewhat harsh chemicals, the lists of side effects are rather lengthy.

Sulfasalazine was originally used as an antibiotic. But it is also thought to impact inflammation in the gastrointestinal tract. As mentioned in an earlier post, it is thought that 2/3 of the immune system lies around the intestines so it makes sense that sulfasalazine may reduce inflammation by impacting this area. This was the very first drug prescribed for my RA. No chance was given to see its impact because about 7 days into popping these large pills, I developed a severe allergic reaction. This occurred over the weekend and I was very close to heading to the emergency room. It took over a week for the sulfa to get out of my system. Also during this time, the symptoms of RA stepped it up many levels…that’s when methotrexate was prescribed.

I like to call methotrexate (MTX) the “chemical weapon” of choice against RA. At higher doses, it serves as a chemotherapy drug for some forms of cancer. In this use, it actually acts as a cell killer…attacking cells that divide quickly (like cancer cells). At lower doses, MTX acts as an anti-inflammatory by affecting T-lymphocytes. Methotrexate is probably used by more RA patients than any other treatment and is regularly used in combination with biological treatments (a future post).

http://www.flickr.com/photos/psyberartist/

My experience with MTX was short-lived. I took the first dose (7.5mg) on a Saturday as many do in an effort to fight the common side effects of nausea and headaches. By week three, it was clear that I couldn’t tolerate it at all. Besides the constant nausea and headaches, my brain was in a state of fog, my body hurt (not just from the RA), and I was totally nonfunctional. My rheumatologist said that a portion of patients cannot tolerate MTX. I knew it would be me because of my sensitively to every medicine under the sun. That’s when Enbrel was started.

Even though I’m no longer taking any “chemical weapons” for RA, I’m glad that they exist and provide relief for many. But the side effects are many and patients need to be fully aware of them in an effort to weigh benefits and costs.

[ii] http://www.webmd.com/rheumatoid-arthritis/modifying-medications