10 Years : 30 Days

RA Guy Adventures of RA Guy 7 Comments

A couple of weeks ago someone asked me how I cope with the financial concerns that often result from living with rheumatoid arthritis. From reading my blog, she had (correctly) determined that I currently do not have a full time job. This is my answer.

calendarRheumatoid Arthritis Guy has always had the habit of looking back a year.

It’s not something I do every day, nor is it something that results in me getting stuck in the past. Instead, it’s just a personal game that I have always played.

The rules of my game are simple. I try to think back and remember what I was doing approximately a year earlier. I can’t look at any old calendars nor can I refer to any archived emails to try to refresh my memory.

But I just decided to twist things up a bit.

Last night, as I was at my physical therapy session, I snuck a peak at the display on the machine that I was wired up to. I have always heard the long series of beeps as the physical therapist programs the device, along with references to upper and lower frequencies. 40-80. 90-10. Take your pick. I was fascinated with the fact that this therapy simultaneously delivers upper and lower frequencies, as opposed to one constant frequency I received years ago when my treatment used standard TENS machines.

So, I thought it might be fun to expand the upper and lower limits of the time span that I look back upon. If there’s anything that I have learned recently through living with rheumatoid arthritis, it has been to not only accept change but to have fun with it. So, instead of one year, I ended up with a time frame of one decade and of one month.

One Decade

Ten years ago to the week I walked across the stage at Harvard and received my masters degree in architecture. (This anniversary would have passed completely unnoticed had I not altered the rules of my game.) What a huge turning point of my life this time was! After eight years of college, I was finally heading into the working world, armed with my double Ivy League degrees. (My bachelors degree in architecture was from Columbia – what a blast it was to be an architecture student in New York City!)

I was full of hope, somewhat naive (okay, very naive!) when it came to internal office politics that would soon become a part of my corporate life, and definitely still unaware that my monthly student loan payment would soon be equivalent to a comfortable mortgage payment in many parts of the country.

I left the cold winters of the northeast for the cold summers of (foggy!) San Francisco. My career immediately turned into a dual track which included traditional architecture and user experience design/information architecture. Living in the heart of the internet and software boom, I thought it would be fun to overlay the physical design principles I had learned in architecture school onto the virtual design principles of the emerging field of web interface design.

Right around this time I started experiencing slight pain in my knees and feet. I just assumed that this was the normal aging process, and started taking supplements like glucosamine-chondroitin. I went to the doctors office a few times for x-rays, but they never showed anything conclusive.

One Month

Fast forward nine years and eleven months, and I find myself at the start of May 2009. I had just passed through the worst flare of my life – the exact days will stay etched in my mind for a long time to come. May 1 – May 3. My entire world shrunk down to periods where I took things minute by minute  – literally. Everything that I had previously loved was pushed aside in a heartbeat.

As I rode out (and continue to ride out) this recession, I was actually grateful that I was forced to drop my financial worries and instead spend all of my time and energy prioritizing my health care. All of my medical visits (rheumatologist, psychologist, physical therapist, acupuncturist, etc.) became my full time job – literally.  Last week alone added up to forty hours. Although, instead of money coming in – it ended up flying out faster than ever before. (I guess it would be too much to ask that my unpaid internship at Rheumatoid Inc. also provide health benefits?)

The results of my efforts of the past month are already paying off in ways that a salary never could. The lab results I took to my rheumatologist yesterday show improvement. Looking at my rheumatoid arthritis overall, it has gotten much better. I still continue to have “mini” flares about every ten days, but the severity baseline is trending down. (While these flares that I refer to are no way “mini” in regards to the actual pain and inflammation, they are no longer the life-altering events that they used to be just a month ago.)

I even got a bonus!  I was able to use the presence of rheumatoid arthritis in my life as a portal to get back into the world of art and design that I love. (I’ve even started to enjoy the art of writing, something that I have never really done before. As a designer in multiple fields, my work has always focused on drawing.)

My health will always come first. But, I now know that there is no need to push aside everything that I have enjoyed doing in the past ten years. I need not wait for another consulting engagement to appear, nor I need wait until my rheumatoid arthritis comes fully under control. I can go back to doing those things now, and I can do them on an even more personal level.

And as my health and happiness continue to fall back into balance, I have no doubt that improvements to my financial life will soon follow.

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

Comments 7

  1. Jules

    Isn’t it a wonderful discovery when we get to the place where we know that we don’t have to sacrifice everything we enjoyed to our disease? As I find more and more things that I CAN do again-it becomes like the sun peeking out from behind the clouds.

  2. Diane

    What a leveller! I’m just completing an application form that, should I get the job, would increase my hours worked from 20 to 37 – I’m agonising whether to do this, but financially I need to…Whilst I appreciate the time at home with my part-time role, I’m aware that I have no financial plans for my retirement, and it’s approaching far more rapidly than I would like. Life is full of decisions like this. My life has changed immeasurably since the RA diagnosis, but like you I try to find happiness and balance in everything I do. The balance in this case being that the job is in a school, and I would therefore always know that I would have at least 1 weeks holiday coming up for every 6/7 weeks worked.
    Love your posts

  3. Laurie

    An Architect!!! I guessed you probably did something very creative as a career, but I thought that perhaps you were a writer! I spent days drawing floor plans on graph paper as a teen, but I suck at math…so I became a nurse instead!

  4. Jo-Ann

    It is always interesting to learn something new about other RA sufferers. Have you ever considered combining your talents and design buildings that are attractive and disability friendly? I think that would be a great way to use your talent and insight. I know I would be more interested in buying a house that was designed by an architect that understands my needs as someone with RA.

  5. Post
    RA Guy

    Yeah I think it might be nice to get more back into architecture!

    During the past few years I’ve consulted for some of the larger software and media companies as I’ve helped to design their web site and web applications, and made things easy to use. This has allowed me to work from home, which has been great.

    There are a lot of aspects related to usability and accessibility in web design, as well.

  6. Missy

    Have you ever thought about combining what you’ve learned about all of the above and working it into a partnership the Center for Universal Design at the School of Architecture at NCSU?

    So many of the UD web sites concentrate on the elderly; that’s wonderful. I learned this when looking for specs and ideas about a grab bar, etc. for the shower for myself long before my mom needed it. Stiff and frustrated. I ended up combing through through my dad’s old specs and some old Architectual Records, AIA Journal, and Architecture Magazine, building code manuals, for reference. It was more physically comfortable, especially on HPD’s (high pain days), to look at portable books and magazines. And I ended up looking at the AIA Universal Design Newsletter new product section to ferret out products.

    The wrought irony is that if you need to be looking at the web to get idea for implentation of the UD principles then you might be looking at it to get ideas for someone of any age.

    You would bring so so much to the table; you can visualize, experience, articulate AND bring a robust, pragmatic, intuitive presence.

    And thanks for the smile and shared joy. You brought back a great memory of an excited phone call made on my first visit to NYC. “I saw both the Seagram Building AND the AT&T building!” It was a standing joke amongst his colleagues and friends for years. Yes, studying architecture at Columbia would be a wonderful experience.

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