Koolhaas Houselife

RA Guy Adventures of RA Guy

Koolhaas Houselife is a film about The House in Bordeaux, designed in 1998 by Rem Koolhaas / OMA. The centerpiece of this house is an elevator platform the size of a room which connects the three levels of the house, creating a fully accessible living space for the owner who lived in a wheelchair.

Maison Bordeaux

Unlike most movies about architecture, this feature focuses less on explaining the building, its structure and its virtuosity than on letting the viewer enter into the invisible bubble of the daily intimacy of an architectural icon.1

If you are going to watch only one of the previews, be sure to check out the second one – it’s full of moving platforms, automatic windows and glass walls, and self-retracting ceiling panels!

[YouTube Video: Koolhaas Houselife Trailer 1]

[YouTube Video: Koolhaas Houselife Trailer 2]

The married couple bought a hill with a panoramic view over the city and approached the Dutch architect Rem Koolhaas in 1994. The husband explained to him: “Contrary to what you might expect, I do not want a simple house. I want a complicated house because it will determine my world.”

Instead of designing a house on one floor which would ease the movements of the wheelchair, the architect surprised them with an idea of a house on three levels, one on top of each other. The ground floor, half-carved into the hill, accommodates the kitchen and television room, and leads to a courtyard. The bedrooms of the family are on the top floor, built as a dark concrete box. In the middle of these two levels is the living room made of glass where one contemplates the valley of the river Garonne and Bordeaux’s clear outline.

The wheelchair has access to these levels by an elevator platform that is the size of a room, and is actually a well-equipped office. Because of its vertical movements, the platform becomes part of the kitchen when it is on the ground floor; links with the aluminium floor on the middle level and creates a relaxed working space in the master bedroom on the top floor. In the same way that the wheelchair can be interpreted as an extension of the body, the elevator platform, created by the architect, is an indispensable part of the handicapped client. This offers him more possibilities of mobility than to any other member of the family- only he has access to spaces like the wine cellar or the bookshelves made of polycarbonate which span from the ground floor to the top of the house, and thus respond to the movement of the platform.2

Now that’s accessible design!

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

On Pins And Needles

RA Guy Adventures of RA Guy

NeedlesFor the past couple of days, Rheumatoid Arthritis Guy has been on pins and needles. No, I am not nervous that something bad might happen.  The reality is, I am actually the most calm that I have been in a long time. (In my RA terms, a long time means a month…)

The pins and needles that I speak of are literal.

Two days ago, I woke up early in the morning to go to the lab. (This was the first time in a long time that I’ve actually had to set my alarm clock.) I arrived right when the doors opened, submitted my doctor’s orders, paid the bill, and then went into the area where the actual blood samples are taken.

After about five minutes my name was called; I entered the room, sat down, and rolled up my sleeve. Luckily, it has never been difficult to find a vein in my arm. A few minutes later I was pressing down on the cotton ball, as the lab technician put the labels on the four test tubes.

Before I was diagnosed with rheumatoid arthritis, I was one of those persons who could not stand the sight of blood. On the few occasions when I accidentally caught a glance of my blood as it was being drawn, I immediately became dizzy and light headed. Now, with all of the blood work that I have had done since I was diagnosed with rheumatoid arthritis, I am able to look directly at the tube as it fills – without even missing a beat.

This is the first time ever that I have had my blood drawn without a sense of impeding doom. We know the routine…get your blood tested every few months to make sure that the medicines are not causing any liver damage, check for rheumatoid factor levels, and so on. (Although, up until now, I continue to be seronegative. Does this mean that I will always be seronegative?) In the past, I was always a nervous wreck between the time the lab test was performed and I received the results from my rheumatologist. I always expected the worst.

Everything always turned out to be okay, though. The funny thing is, that if there was ever a time to be nervous, now would be the time. You see, I’ve had a strong abdominal pain for about two weeks, and it continues to get worse with each new day. My next appointment with my rheumatologist is Monday afternoon. While I could spend from now until then worrying, I’d much rather adopt a wait-an-see attitude.

The best part of going to the lab was dropping in on a great little hole-in-the-wall breakfast joint that is just around the corner. (When breaking the fast that is required for blood tests, I’m going to do it with style.) At the table next to me was a young girl and her father. Her face was one big smile, as they bought breakfast to her table. Just a few minutes minutes earlier, she had been sitting next to me in the lab with the most worried look on her face, obviously scared at the thought of being poked by a needle. It seems like I’m not the only one who combines a visit to the lab with a visit to this breakfast joint.

Yesterday, I spent two hours late in the afternoon with my acupuncturist. Although I have gone many times in the past, I had not had a visit during the past half year. I had been looking forward to this session all week, and it was great to finally go back.

The person who I see practices electroacupuncture, which is a combination of traditional acupuncture and TENS (transcutaneous electrical nerve stimulation). After my left knee and my right hand were loaded up with needles, the cables were attached and the machine was turned on. Although this may sound like a painful process, for me the results are nothing other than complete bliss. (Can anyone doubt a guy when he uses the word bliss?) Unlike traditional TENS, the electrical massage of electroacupuncture goes directly to the muscles and tendons.

In every session I have had, including yesterday’s, I have fallen asleep immediately. I still don’t know why exactly this happens. The best explanation that I can think of is, that since some of my most chronic pains are temporarily swapped for an absolutely wonderful sensation, my body takes advantage of the opportunity to experience pure, undisturbed sleep. (I don’t think I’m the only who has often woken up more tired than when I went to sleep, after another night where the pain prevented restful sleep.)

I ended up getting a two hour session, instead of just the sixty minutes that I was scheduled for. (The acupuncturist is a close friend of the family.) I often read articles online and discussions in forums where people ask if acupuncture really does help rheumatoid arthritis. All I can say, for a fact, is the for the two hours that I was on the bed, I was in pure heaven. Whether this helps my RA on a “scientific” level, I do not know. What I do know, is that there are few other things that have such an immediate and noticeable positive effect on my mind and body.

As of my current medications are in pill form, the one needle that is not a regular part of my life is the syringe needle. Although I take this back. A month ago today I had my first cortisone injection, and I have two more vials and syringes here in the house that my rheumatologist gave me “in case of an emergency”. (What a great rheumatologist I have, no?) While I was bumped up to methotrexate injections a few years ago, that was called off after it was obvious that is was not relieving my stomach and nausea problems. So while I do not see the syringe on a regular basis, it still is there every now and then.

Having been afraid of needles most of my life, they seem to have become some of my closest friends in my life of rheumatoid arthritis.

Are needles a part of your life?

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Hyperflexible

RA Guy Adventures of RA Guy

plasticmanRheumatoid Arthritis Guy is extremely flexible. Since I live with rheumatoid arthritis, this can be both ironic (to me) and misleading (to others).On one hand, I have joints that stiffen up and snap on a regular basis. On the other hand, my body has always exhibited signs of super elasticity.

My nickname at my last yoga studio was “rubber man”. My nickname at my current yoga studio is “bubble gum”.

I try to not draw too much attention to my flexibility, but when I throw my knee over my shoulder or do a forward bend that might make some Cirque du Soleil performers jealous, I guess others do tend to notice. (And I’m sure there is at least one person in the room who thinks: There is absolutely no way he can have arthritis!)

My first rheumatologist always asked me to bend forward and touch me toes, as part of my routine physical exam. I always thought this was sort of silly, as even during my worst flare days I can still place my hands palm down on the floor in front of me. No matter how much I told her that this should not be used to evaluate my current state, I don’t think she ever really listened to me. (She always thought that I might have ankylosing spondylitis, but after every part of my body except my spine showed signs of inflammation, she finally dropped that theory once and for all.)

While my physical flexibility continues to be a great benefit, it  hasn’t been nearly as important as the lifestyle flexibility that I have learned to incorporate into my days. At times it feels like my choices are limited to either/or. I am learning, however, that there are many other options in between. By exploring these alternatives, I can often find a healthy and enjoyable balance between “doing too much” and “doing nothing at all”.

Tardiness

In general, I am a very punctual person. I dial into conference calls two minutes before the meeting start time. I get to yoga class ten minutes early so that I may set up my mat and do some light stretching. I arrive at my doctors appointments five minutes before the hour. And according to the type of social event I am attending, I arrive either at the appointed time or during the range of what is accepted as fashionable lateness.

Now that I live with rheumatoid arthritis, rarely does my punctuality reach the precision of minutes. If I hit the target withing half and hour to an hour, I am happy. (Although I do make an exception for my medical appointments, as I don’t want to lose a minute of the time that has been set aside for me.)

There is a direct relation between how I am doing physically, and how long it takes me to get ready to leave the house. (Rheumatoid Arthritis 101.)

For me, it’s not out of the ordinary to spend twenty minutes putting on my ankle braces and shoes. (Even at that, I still have to take a short break between each of the four items, six if we’re counting socks.) Almost half an hour, and we’re only talking about my feet!

I now set aside an hour to get ready, for what used to take me ten minutes. (Depending upon my current state of dress, I might even have to give myself an hour and a half to get ready.) I like to try to get in at least a thirty minute nap before I leave the house. Add in transportation time, and this means that I often have to start getting ready at least two hours early before any appointment.

Arriving on time can sometimes be a challenge. (It can also be an additional stress on top of what I already have to deal with.) Needless to say, I have learned the importance of allowing myself to be late. Although I don’t think I take it to an extreme of “irresponsibility”, it certainly has made things a little easier.

Of course, different types of events require different lead times in which I need to notify the person that I am going to be late. But ,I have generally found the person on the other end to be quite accommodating (even more accommodating that I expected).

I’ve even had dinner plans postponed by more than two hours. One evening I had some ankle stiffness that wouldn’t go away. I didn’t want to cancel dinner plans, so phone calls went out every half hour between friends and the restaurant. Things eventually got better, and a couple of hours later we were all sitting together. This was much nicer than just canceling outright (I was visiting from out of town, so rescheduling for another day was not a possibility). My friends actually confessed to me that the unscheduled delay actually ended up working in their benefit, as well.

While we live in a culture that praises punctuality almost down to the second, it may seem odd to try to introduce variable tardiness into the equation. But by doing so when necessary, it has made my days easier and has allowed me to continue to take part in things I enjoy – even though I just might be a little bit late in doing so.

Change of Plans

Plans have been made days ahead of time, but the morning of the event I wake up with a horrible flare. From experience, I know that things are not going to get any better as the day progresses. What should I do? Sometimes, it seems easiest to just call and cancel. Although in the end, this really isn’t that much fun.

Once, I promised a group of friends that I would invite them to my house and cook dinner. As the date neared, my grand dinner menu continued to shrink both in size and complexity. The evening before I finally accepted that I wasn’t even going to be able to prepare microwave popcorn, much less anything resembling a dinner.

My first reaction was to cancel, but then I thought: Why don’t we go to a restaurant instead? I reserved a table at a nice restaurant, and then called my friends to let them know about the change in plans. The evening ended up being a blast, and I still look back at it with fond memories.

Sometimes I do the exact opposite.  Plans to go to to a favorite neighborhood restaurant turn into take-out and dinner at home. Things changed, but the highlight of the evening remained the same: good Thai food (my absolute favorite).

I am also learning that sometimes a change in plan means cutting out Activity A in order to be able to do Activity B. By prioritizing, I am able to pick and choose those things that will be most meaningful, and accomplish those. There are many days where, if I leave everything on my plate, I end up getting through none of it.  Less truly is more.

By bringing more flexibility into my life, I am realizing that I can overcome some of what I originally perceived to be restrictions of my life with rheumatoid arthritis. The limitations of fatigue used to be a hard wall that surrounded my days; now they have become blurry boundaries. Sure, they are still there – but as long as I don’t bump up against them so often, they do seem to begin to fade a little into the background.

*****

One doctor told me that my (physical) hyper flexibility was actually a symptom of my rheumatoid arthritis. Has anyone heard this before? (I have had a lot of this flexibility since I was a child.)

*****

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Survivor: Tierra Del Fuego (Season 19)

RA Guy Adventures of RA Guy

SurvivorWhile surfing online last night, Rheumatoid Arthritis Guy came across a leaked document that included all of the secret details about the upcoming season of the hit CBS reality show Survivor.

The link has since been taken down, but I’ll go ahead and share with you what I remember.

This season’s big twist (spoiler alert!): In order to be eligible for the show, contestants must be living with rheumatoid arthritis. (In a related twist, producers have agreed to eliminate any upper or lower age limits.)

This new season will be named Survivor: Tierra del Fuego. (Translation: “Land of Fire”.) This archipelago is located off the southernmost tip of South America; the island chain is divided between the countries of Chile and Argentina.

However, the internal documents showed all filming will actually take place in a climate-controlled sound stage located in New Jersey. The goal is not to maintain a stable weather environment, however. Instead, the aim is to be able to easily and quickly switch from arctic tundra winds to rain forest heat and humidity. (Experts who are advising the producers were quick to note that these climate changes would not have any affect whatsoever on the contestants…whatever!)

Originally, producers planned to start with the following two tribes:

Tribe A: Contestants who received a speedy RA diagnosis.

Tribe B: Contestants who received a long, drawn-out RA diagnosis.

Ultimately this idea had to be shelved, as not enough people could be found to complete the first tribe.

(Harsh, no? But have you ever stopped and thought: Why, in this day and age, does it still take so long to arrive at a diagnosis of rheumatoid arthritis? As I bounced from doctor to doctor for years, all the time exhibiting what I later found out were major signs of RA, not one ever suggested that I see a rheumatologist.)

In the end two tribes were finalized, and trust me – these two tribes really raise the notion of rivalry to a whole new level!

Tribe A: Contestants who believe that diet affects RA.

Tribe B: Contestants who believe that diet does not affect RA.

(Seriously folks, can’t we just all get along? I’m not advocating the take-this-special-pill-and-you’ll-be-cured-overnight stuff, I’m just talking about the food that we choose to either eat or not eat.)

As usual, this season will be chock full of exciting challenges.

Endurance: 10-yard dash, grocery shopping (on a Saturday morning), and holding that smile while you hear (for the millionth time) some off-beat bit of “advice” from a perfect stranger.

Problem Solving: Three card rheumy (where you have to try and pick which rheumatologist is good at listening), balancing your health budget (always in their favor), and “what do you do at work when every day technically qualifies as a ‘sick’ day?”

Teamwork: 1% me 99% them (on the absolute worst of flare days, of course), “‘I’ll stir if you chop, slice, measure, pour, and clean up”,  and the six-legged race (three legs, two crutches, and one cane).

Dexterity: Tie your shoes, thread a needle, and button your shirt.

Willpower: Keep moving even though it really hurts, keep moving even though it really really hurts, and keep moving even though it really really really hurts.

In reward challenges, contestants will have the opportunity to win “Get out of flare free” cards.  (Redeemable only at time that is never of their choosing, of course.)

There will be no immunity challenges this season. All contestants are equally eligible each week to have their torch lit during the “you’ve been flared” ceremony.

The season winner will receive a year’s worth of doctor visits, lab tests, physical therapy sessions, medicines, more medicines to counteract the first group of medicines, counseling sessions, acupuncture sessions, and (if you were in Tribe A) dietitian visits.

Early reviews are already coming in.

“It’s going to be the teariest season yet!” -TV Guide.

“All winners, no losers!” -NY Times.

“Two (swollen) thumbs facing in the general upward direction” -Ebert & Roeper

Okay, so I obviously wanted to have some fun with today’s post – and not provoke a river of tears for a second day in a row. Still, I’ll close on a simple, yet serious, note.

Be a survivor. Don’t be a victim.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Wonder Woman, My Mentor

RA Guy Adventures of RA Guy

Wonder WomanA week ago today, Rheumatoid Arthritis Guy spent an hour talking with an absolutely wonderful woman. Even though she and I are years apart in age, we do share one very important thing in common – and this is what bought us together for a visit on that sunny afternoon.

Both she and I live with rheumatoid arthritis.

What made my visit even more special was the fact that – for the first time in my life – I was sitting down face to face with another person so that both of us could share our stories about living with rheumatoid arthritis.

To be honest, I took me a while to build up the nerve to go through the visit. Oh, it had nothing to do with her. It was all me. By meeting another person who has spent a lifetime living with rheumatoid arthritis, the rheumatoid arthritis that I was actually struggling to confront was my own, and not hers.

Was it okay for me to cry if I felt the need to?

How was I going to react to any visible deformities?

Am I really doing the right thing?

These and many other thoughts raced through my head in the days leading up to our visit.

Just a few minutes into our conversation, all of my fears were put to rest. In front of me I had this incredibly strong woman who has been living with rheumatoid arthritis for almost three decades. And while her body showed visible signs of her long struggle with rheumatoid arthritis and osteoarthritis, her person radiated nothing but strength.

This physically fit thirty-something guy couldn’t help but look up to this feeble lady with anything other than amazement.

Her first words were “the pain – get used to it. Learn to accept it, and make it part of your life, because it’s not going away.” Her statement was not the least bit cruel. Instead, she spoke with wisdom and experience. As I have only recently begun to accept (again) the chronic nature of RA pain, I really appreciated her advice.

She then proceeded to show me her hands. The wrists were permanently swollen and out of place, as were the knuckles. One pinky finger is scheduled for an upcoming joint replacement. These hands were a true testament to time, and they were beautiful. She had no shame whatsoever as she held out her hands so that I may inspect them. (I silently kicked myself for even worrying how I might react when I saw her hands.) If only everyone could be so proud.

We traded stories of different medical treatments and their sometimes horrible side-effects. She could not handle Arava, but is on methotrexate. I could not handle methotrexate, but am on Arava. We swapped homemade remedies for protecting our stomachs, and shared information about nutritional supplements.

She pulled a large tube of Aspercreme out of her purse, and gave it to me as a gift. Little did she know that just a week before, my sister had sent me a box of arthritis products and orthopedic aids via international courier – but the large tube of Asprecreme that was originally included in this package had to be removed due to customs regulations. Somehow, a tube of Aspercreme still managed to find its way into my hands.

We wrapped up our visit by talking about the importance of continuing to carry out activities that bring pleasure to one’s life; that by spending time on something we enjoy it is possible to temporarily get our mind off the pain and disability. In her case, knitting has become too painful but weekly bridge is something she continues with a vengeance.

As I walked home that afternoon, I couldn’t help but think back to some arthritis forum messages that I had recently read online. Some women, who have lived with rheumatoid arthritis for twenty or thirty plus years, voiced their concerns about openly discussing their experiences of living with rheumatoid arthritis in front of us “newbies”. They thought that by sharing the details of their lives with RA, they might scare those of us who have only recently started on this journey.

To all those women who have lived a lifetime with RA, please let me say that when I hear your words and your stories, I am inspired by your lives and by your strength. Please do not think that you are scaring me. During some of my most difficult flares this past month (which have been some of the toughest moments yet), messages and posts from people who have lived with RA for decades have flashed through my mind – and I often find myself thinking: If they can get through this, so can I!

Thank you for the inspiration.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!