So I went to one of the Massage Envy spas last night for their Arthritis Foundation deal. It was an…uh…interesting experience. Basically, my massage therapist was a weirdo girl who tried to chat me up during the massage while I was lying face down shirtless and already feeling a bit uncomfortable. Practically straight away she asked me in a creepy voice, “So what do you like to do for fun?” Huh? NOTHING. DO NOT TALK TO ME DURING MASSAGE, PLEASE. Throughout the rest of the hour she proceeded to tell me about how she thinks about what it would be like if her dad was a cat and that she has psychic abilities. Regarding the latter, of course I couldn’t resist asking (still lying face down while she pummeled my back and called me “Dear”) – Ok, so what do you sense about me and my “energy?” She replied, “Your right side is full of work stress and…FEAR.” Uh ok. She went on, “Your left side has some…anger. Is there trouble with your mom?” What? No. She said, “I sense an older, female energy in there.” Well I’m certainly mad at plenty of people these days but my mother is not one of them. And I’m pretty sure she’s not in my left shoulder. Maybe it’s Grandma? Er, okay, thank you, Creepy Girl, glad I asked.

I think I walked out of there more tense than when I walked in.

A lot of things have been happening regarding my RA, and well, with everything really. I’m having surgery on my right ankle again on October 31st (I hope my surgeon doesn’t play any “tricks” on me in the operating room). It’s the same surgery I had five years ago – the doctor is going to scope my ankle to try to see what’s going on in there. Like last time, I have a feeling that he’ll also end up removing inflamed synovial tissue. The frustrating thing about my ankles, the right one in particular, is that nothing ever shows up on the MRIs and X-ray scans yet I continue to have debilitating pain and swelling. As the surgery date gets closer, I’m starting to get more nervous and scared, but I just hope the surgery is more of a success than it was last time. I had my pre-op physical yesterday and I’m good to go. Whoohoo! Happy Halloween, eh?

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Margo’s Story

September 28, 2011

This video is really good! I found it on the Arthritis Foundation’s Facebook page.

I gave up playing the piano (I had taken lessons for nine years) 14 years ago when I was diagnosed with RA. This girl is amazing – maybe there’s hope I can play again too?

Arthritis Walk 2011

September 27, 2011

The Arthritis Walk 2011, Edina, MN

Sorry I haven’t updated in a while but I’ve been busy working at a new temp job for the last month and doing a million other things – doctor’s appointments, photography stuff, volunteer work, passing out on the couch, etc. Last weekend was a busy one, but it was pretty good. The Arthritis Foundation’s annual Arthritis Walk was held at a lovely park in Edina last Saturday morning. I volunteered to take photos again for my local chapter, The Upper Midwest Region. Luckily it was a perfect, beautiful day for the walk and a lot of people participated in the event, raising money for the Arthritis Foundation. Also exciting, a few of my photos were shown on the local news broadcast later that night (KARE 11 News/NBC) and I was credited for them (this did not happen last year)!  As soon as I get a chance I’ll upload the photos to the MN chapter’s Shutterfly site:

The Arthritis Walk, Sept. 24, 2011

The New York Times article: Williams Says She Struggled with Fatigue for Years

Tennis star Venus Williams just recently withdrew from the US Open tournament announcing that she has Sjogren’s Syndrome, which is an arthritis-related auto-immune disease. I heard the news on the radio when I was driving home from work last night and I immediately felt surprised and really sad. If she has been having any joint pain and fatigue similar to RA, I can’t imagine how she can continue to play tennis. Hopefully she will get on a good treatment regimen right away and that she won’t have to give it up.

In 2004 I was diagnosed with Sjögren’s myself after waking up one morning with extremely dry and inflamed eyes. It was horrible and probably the worst pain I have ever experienced in my life. My vision became blurred and I felt like I had shards of glass cutting into my eyes. The only relief I got was when I was asleep; my time awake was torture. After waiting a month to see a dry eye specialist (I fault my former rheumatologist for this), I finally got in and had tests done to try to determine what was really going on. I was scared to death that the inflammation was attacking my tear glands and that my eyes would never be normal again. Luckily, my tear glands were fine and were producing enough tears. It was my tear quality that was bad resulting from inflammation of my eyelids, also known as blepharitis. After using steroid eye drops and other drops and tedious home remedies, my eyes finally returned to “normal” after about a year of dealing with this. I have little flare-ups from time to time but thankfully my eyes have never gone back to being as bad as they once were. However, I still can’t wear contact lenses (which makes me really mad and depressed because I hate glasses).

My heart really goes out to anybody who suffers from Sjögren’s  Syndrome because I know how incredibly painful and frustrating it can be, emotionally as well as physically. I hope Venus will get the care and support that she needs having this chronic disease.


August 31, 2011

My ankles are worse again – puffy, swollen, painful. They had gotten a lot better recently and now they’re back to how they were before. I was so happy because I (wrongly) thought they were going to stay better.

Will my life ever stop being such a roller-coaster?


August 26, 2011

I’m so glad it’s Friday! This has been a long, stressful week. In bad news, my ankles and feet are still in rough shape and are very swollen and painful. I wound up going to the ER Tuesday night because I was kind of freaking out and didn’t want to wait for a doctor appointment. Thankfully all of the blood/urine tests came back normal. The doctor told me that she thinks I just have a random case of edema and she prescribed a diuretic for me to take for a week (Lasix). Today is Day 2 of taking the water pill and I don’t notice anything different. I also don’t feel like I’m having to go to the bathroom more often. So now I’m afraid that the swelling is from the RA. My rheumatologist’s nurse is supposed to be calling me back today about this. When I talked to her a few hours ago and explained what was going on, she didn’t seem to think that my swollen feet/ankles are from the RA. But who knows, right? Most of the time with this disease I can never get a certain answer or diagnosis which DRIVES ME CRAZY. It’s so maddening. I really hope this swelling problem gets sorted soon because I feel like I’m really on the verge of not being able to handle it. What that means, exactly, I don’t know – but I’m close to it.

In good news, my new glasses came in a couple days ago (which I am sporting in the above photo). They’re different than my old frames and a bit bigger, but I think I really like them. Change is hard for me sometimes – arthritis flare-ups, new illnesses, new jobs, new glasses. Stress! I keep trying to tell myself that change can be good. I probably look even more like a librarian in these specs, but that’s fine with me. Librarians are pretty awesome.

Ok, I better get back to “work.” Happy weekend!

Arthritis and art

August 15, 2011

Several months ago I was interviewed by a Stanford University student for a project she was working on involving art and biology. More specifically, she decided to focus on rheumatoid arthritis as an example of an auto-immune disease. The student, Catherine, had randomly found my blog and emailed me asking if I’d like to participate. She described the project a bit over email, which sounded really interesting, so I said sure, give me a call. It was maybe a week later that we spoke on the phone and I became quite impressed with Catherine and her ideas after hearing more about the project. She explained it better than I can, but basically she said that she planned to interview several people with RA and then in a series of drawings (of cells, body systems, etc.) she would use their exact words to form the images she would illustrate. As we spoke, I became very excited and inspired hearing her tell me about her studies and what she was doing. The biology and science of RA is something that I’ve been forced to learn about, you could say, and it is a constant presence in my life. I have also always loved art and seeing new ways one can express him or herself through it. Catherine asked me a lot of questions about my history of having the disease and about my life in general. She wanted to know what it feels like having RA and what my fears, hopes, and joys are (if any). We chatted for about two hours with her also tape recording me. She was a very lovely, sweet person to talk to and I feel grateful to be a part of her work at Stanford. But anyway – last week she emailed me a video clip of her presenting her project. She’s also supposed to email me scans of the actual artwork sometime in the near future, which I will post when I get them. So here’s the video clip. Arthritis and art, crazy huh?

Dear President Obama

August 12, 2011

Just saw this posted on Facebook by The Arthritis Foundation! Good stuff.


August 10, 2011

Bike lock demonstration – The Bike Library Program

I just got back from taking a short bike ride, about 2 miles, which felt really great. Because the weather here has been so disgustingly hot and humid for the past month or so, I’ve been neglecting riding my bike (among other things). Maybe that’s a bit lazy of me, but if you ask anybody who lives in the Twin Cities area they’ll agree that lately it’s just been too damn hot to do anything. This evening I photographed the last Bike Library orientation of the season too, which maybe helped put me in the mood to bust out my own bike again. Sibley Depot’s Bike Library Program has been a lot of fun to be involved with and I’m very impressed with the work they’ve been doing in the St. Paul and Minneapolis communities.

In other news, while I’m still unemployed, I have been trying to keep busy working on my own stuff. I finally bought an Internet domain and web host and started building my own photography website/online portfolio. It’s pretty basic and minimalist, but that’s the look I’m going for, I think. Maybe someday in the future I’ll be able to make it fancier but for now I think it will work out fine. I hope to use it as a reference for potential employers and job opportunities.

Here’s the link:

Feel free to let me know what you think and if you have any web design tips or advice!

Okay, I’m really tired yet hyper-wired on caffeine. I will give up coffee again tomorrow, I promise. Or the day after tomorrow.

Goodnight, all!

Bikes are awesome. ♥

Sibley Bike Depot:


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