May 1, 2013
Hello from Florida! I’m on a little family vacation now in Ft. Myers Beach with my parents, my sister, and her husband and their two year-old daughter. We just celebrated my mom’s birthday today; we had dinner in Naples and then watched the sunset from the Naples pier. It’s been wonderful to escape from cold (and SNOWY, still!) Minnesota. My family and I have been recently dealing with a very stressful and scary health situation – my dad was diagnosed with prostate cancer. We still don’t know the results from the last tests he had done to see if the cancer has spread. He wanted to wait to find out after this Florida trip, which is understandable I suppose. Although my mother, sister and I have been worrying like crazy. Relaxing on the beach and just getting away from “real life” for a little while has definitely helped to take our minds off things. So while the questions and fears and “what-ifs” are still nagging in the back of our minds, we are having fun being down here, enjoying the beautiful Gulf of Mexico and the sunny Florida weather. It’s been especially a joy to watch my little niece running around on the sand and getting so excited about being at the beach. She’s so adorable I almost can’t handle it – I just want to hug and kiss and squeeze her all the time. So cute.
In RA news, my arthritis is worse again, of course. Both ankles have been swelling up like balloons, especially my right foot and ankle. I’m not sure if it’s the humidity, the extra walking, or all of the Diet Coke I’ve been guzzling. It’s probably a mix of all three, I’m guessing. So I’ve started taking prednisone again, icing my ankle and I’ve cut way down on the Diet Coke consumption. Water just isn’t that satisfying when you’re lounging in the sun by the beach and you want something cold and zero calories to drink though. But Diet Coke is bad, I know that. Also pain-related, like the moron I am sometimes, I was careless and got terribly sunburnt our first full day here. I went and laid on the beach wearing a tank top and shorts for seemingly not that long – but apparently it was long enough to get fried. What was I thinking? Hello, pasty white Minnesota skin that hasn’t seen sunlight since last May/June! Stupid. My shoulders, upper arms, upper back and the backs of my legs are the worst. Trying to sleep Sunday night was torture. Luckily my sunburn is better today, but my shoulders and back are still pretty sore. You’d think by now that I would be used to being in pain constantly, right? No! I don’t think I’ll ever get used to it. Physical pain, mental pain, emotional pain – I need a vacation from all of it.
More posts soon, I promise. I have a lot of new arthritis stuff to write about!
February 21, 2013
I’ve been holding off on posting about this on here because, well, I didn’t know what was going to happen. And maybe I still shouldn’t write anything. But…who cares, I guess. So, almost TWO YEARS AGO I was terminated from a temp job because of something related to my RA. Since then I filed a charge of discrimination with the Minnesota Department of Human Rights – which was a long, tedious, annoying ordeal. Just a few days ago I got my answer – my charge was dismissed because there is “No Probable Cause” of discrimination. I’m very angry and frustrated by their decision, however I’ve been told by a couple of attorney friends that it’s not surprising (they probably didn’t do a very thorough investigation – short on staff, short on funds?). Now I only have about a week to appeal this decision and I don’t know what to do. Is it worth it to appeal it? To go to court? I’m beyond broke right now and I can’t afford to hire an attorney. But what this company did to me is so completely WRONG. It infuriates me to think of them being able to get away with it.
This has been a difficult winter so far. I’ve been sick since Christmas, basically, with either bad RA flares or this upper respiratory thing that keeps coming back. I feel really whiny lately, which I hate, but I do hope some good things will start to happen here soon. I’m ready.
January 26, 2013
It’s official – I’m going to D.C. again for the Arthritis Foundation’s annual Advocacy Summit! The Summit this year is March 4-6th and I can’t wait. I registered for it yesterday – the last day to get the “early bird” discount. Hopefully I can get a travel stipend again like last year, because my financial situation is even more dire than a year ago (is that possible?). But being a part of the Summit is really important to me, especially since last year was such a positive, incredible experience. I’m going to contact some people at the Arthritis Foundation who are involved with the event to see if I could also photograph and write about the Summit in some sort of official volunteer way. I’d love to do something like that in addition to being one of the delegates.
Here’s a photo from last year’s Summit of Emily, part of our Minnesota group, reading a letter she wrote for Representative Keith Ellison (I think), sharing her story of living with arthritis.
And here’s a photo of Emily again, along with two other awesome kids (Sammi and Ali) who were part of our Minnesota group. I met and got to know so many nice people last year at the Summit – can’t wait to do it again!
December 15, 2012
I went down to Rochester very early Thursday morning for an appointment with an ankle surgeon at the Mayo Clinic. My ankle surgeon recommended I see this guy and I had been waiting many months just to get an appointment. Well, I have the sinking feeling that all of this is just going to be a huge waste. The doctor didn’t seem very positive that there’s anything he can do to help me. He (like so many other doctors I’ve seen) said that since my X-rays and MRI scans don’t show anything, he doesn’t think surgery would help. Or it could make my ankle worse. He does not want to fuse it (I don’t really want that either, but…). He doesn’t think scoping it again will help either. The only idea he had was to refer me back to my rheumatologist to manage my RA. Okay, great. But my rheumatologist doesn’t know what to do either. Since the rest of my joints have been pretty good and stable, my rheumatologist doesn’t really want to switch my medications. WHAT AM I SUPPOSED TO DO? My ankle is constantly noticeably swollen. It’s painful every day. I can’t walk or stand on it for very long before the pain becomes close to unbearable. I’ve been dealing with these stubborn ankles since 2005 when they both flared up out of the blue. The left one got a lot better (it’s still not normal) but the right one has remained in pretty bad shape. I’m at the end of my rope. Do I just have to live with this? I can’t believe that nobody can figure out exactly what’s going on or how to fix it. But anyway, I need to go back to the Mayo next Friday to have new MRI scans for each ankle. And then a follow-up appointment with the doctor after he reads the scans. The only appointment I could get for the MRIs is at 7 AM, which is really annoying. So either I’ll have to drive the almost two hours down to Rochester, leaving my house at 5 AM. Or I’ll have to go down there the night before and spend the night. None of this is very cost-effective, of course. But, I will go back and have the MRIs. I’m not feeling very optimistic right now, but I hope something good will come of this after I have the new MRI scans. If anybody has any advice or insights, please let me know.
December 2, 2012
First off, many apologies for my absence. I’m embarrassed at how long it’s been since I’ve posted on here. I’ll write a proper update post after this one, I promise!
Anyway, I have some exciting arthritis news! I’ve been given the opportunity to write two articles for Arthritis Self-Management magazine, which is based out of New York City. And, I’ll even be getting PAID to do it. Amazing! The first article will focus on young people who have RA and how they deal with challenges related to school and work. The second article will also be about young people with RA and how they deal with issues of relationships, dating, social interaction.
My question for YOU – are there any of you young adults with RA who would be interested in getting interviewed for either of these articles? I have a couple of people already, but I need some more help. Please let me know ASAP. I’d really appreciate it! The first article is due mid-January. Email me at email@example.com.
October 14, 2012
Fall is here! It’s my favorite time of year yet I feel like I haven’t really been enjoying it that much. Why not? A sudden “episode” of anxiety has seemingly come out of nowhere and hit me like a truck running over my head at 80 mph. Well, okay I guess that analogy isn’t that great because if a truck really ran over my head I would be dead right now and I’m obviously alive. But this anxiety has been really debilitating and I haven’t been living life as I should because of it. I suppose realizing that my dreaded birthday is coming up is what triggered the anxiety attack. I started thinking about my age and where I am in life and what I’ve done and more about what I haven’t done (marriage, kids, grad school, career, my art, moving abroad again, etc). And that’s been really worrying and upsetting me. I know I’ve been beating myself up, unfairly, and way too harshly. But despite my efforts to be rational and chilled-out about things, the same obsessive worries and fears and regrets keep going round in circles in my head. But I think that once I start to really make progress and improvements in at least one area of my life, these feelings will get better and go away. God, I hope so. Regret is such a miserable, self-loathsome, sickening feeling. I’ve struggled enough with it already over the years and I thought I had finally let go of some things until this latest crippling bout of it. I know regret is extremely counter-productive because you can’t go back and change things. Looking back, dwelling, getting sentimental and nostalgic to the point of extreme sadness – this has always been a problem of mine since I was a kid, really. How do you stop thinking this way? If anybody has any good tips, please feel free to share them. I’m so tired of it.
Anyway, in other good news, I just started a new photography blog – http://aclundberg.blogspot.com. I’m really happy with how it’s looking so far. Hopefully as I add more posts it will start to look more professional and will help me land some jobs or something. But despite using it as a job tool, I’ve just been having a lot of fun working on it.
September 11, 2012
Okay, so I finally called and spoke with someone at the Mayo earlier this week and was told that I wasn’t rejected, but I’m on a waiting list for the physician I want to see. So I will see the doctor, but who knows when. I emphasized my desire to be seen ASAP if possible because my health insurance goes back to crap January 1st. The nurse made a special note of that, apparently. Mm-hmm, sure. Waiting, waiting…always waiting.
Another health update: I was recently rejected by the Mayo Clinic to see a doctor in their Orthopedic Surgery clinic for my right ankle. I had surgery for the second time on that ankle last October and the surgery hasn’t helped and possibly made it worse. I’m beyond frustrated. When I got home from my trip last month, I got a referral from my surgeon to see a foot and ankle specialist at the Mayo Clinic. I guess I’m not totally surprised at this rejection, since it’s difficult to get in at the Mayo. But I’m still pretty upset. I’ll have to get on the phone tomorrow and try to talk to someone about it and see if there’s anything that can be done. They just sent me a lame, generic letter in the mail so I didn’t even get to talk to anybody about it. Wish me luck, please! This ankle must be fixed.