Margo’s Story

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

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:

http://arthritisfoundation.shutterfly.com

The Arthritis Walk, Sept. 24, 2011

Venus Williams diagnosed with Sjögren’s

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.

Frustration

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?

Friday

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

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

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

Bikes

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: www.aclundberg.com.

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: www.sibleybikedepot.org

Farmers market

Farmers Market, Minneapolis

I went to the Minneapolis Farmers Market this morning with my friend Nikki. This was my first time going there and I was impressed seeing such a wide and varied selection of produce with rows and rows of bright, gorgeous fruits and vegetables in neat little crates and boxes. We walked around taking photos and chatting. I bought a glass of just-squeezed orange juice (I watched the guy do it right in front of me) and my mouth watered every time we passed by the crates of fresh raspberries and blueberries. I managed to get a few good photos, I think, and it was nice just being up and out early in the morning compared to my routine now of waking up at 10:00 or 11:00 AM (thank you, unemployment for making me lazy). The weather here is still disgustingly hot and humid which is making my joints feel more swollen and painful. Good news though – I have been off prednisone for 11 months now. ELEVEN MONTHS! It’s a miracle. I’m pretty sure that this is the longest I’ve ever been off of that miserable drug since I was diagnosed 14 years ago. Whatever is happening-whether it’s from eating better, fish oil capsules, or bike riding-I hope it keeps working. Actually, I’ve probably been tempting fate somewhat lately because my eating and drinking habits have seriously regressed again. I’ve been guzzling Diet Coke and other caffeinated beverages like crazy. Junk food consumption is also getting out of control. Being at the market this morning helped remind me that I really do need to get back on the healthy lifestyle wagon again. Soon.

Heat

We’re in the middle of a sweaty, suffocating heat wave right now. Just running across the street to grab the mail this morning was miserable. So, I’d say this means no bike rides for me anytime in the near future. We’re supposed to have temperatures in the upper 90s at least until Wednesday, I think. The dew point is also extremely high, reaching tropical levels (75 deg. last time I checked online). I know talking about the weather is boring and I should be grateful it’s not snowing right now (I am). I do love summer yet the heat and humidity is hard on my body and causes a definite increase in swelling and pain in my joints. My ankles especially are both puffy and very sore to the touch. I’m sure I would be better off living in a drier climate, however Minnesota is home for now – with its sultry mosquito-filled summers and bone-chilling endless winters. Today I’m mostly annoyed that I can’t go on a bike ride or just sit in the backyard reading a book without melting into a puddle on the patio.

In other RA-related news, unfortunately the steroid injection I had in my right ankle almost two weeks ago did not help. I had a feeling it wouldn’t, because I suspect that the problem is in the soft tissue of my ankle and not the actual joint itself. The numerous other cortisone injections I’ve had in the past never helped, but I was really hoping it would be different with this one. I’m dreading calling my orthopedic doctor again about this because I’m afraid he’ll say what he said the last time I saw him in December after he looked at another new MRI scan – “I don’t know what to do.” What DO I do next? Try the Mayo Clinic again? The ankle isn’t that complicated of a joint (not compared to the wrist, for example); I just don’t understand how no one can figure out the problem. I’ve been dealing with these bad ankles since 2005 and it’s come to the point where I’m about ready to have the right one fused. I don’t want to do that but I don’t know what else to do to ease the pain. Does anyone have any insights or experience with this? If so, I’d really appreciate your input.