August 18, 2014
Hello from beautiful North Carolina! I’ve been here since August 12th, initially for a medical appointment at Duke University Medical Center with an orthopedic foot and ankle specialist/surgeon. The appointment was a huge let-down, to put it mildly. But I’m glad that I decided to extend my stay and make a little holiday of this trip. I’ve been staying on an incredible little island called Ocracoke, which is part of North Carolina’s Outer Banks since last Friday night. I really lucked out in choosing this place, as well as the cute and charming B&B I came across online. I’ve been so impressed with the island, the village, the B&B, the beaches. Everything.
You can read more about my Duke and NC experience in the post I recently wrote for RheumatoidArthritis.net:
Tomorrow is my last full day here and I’m quite sad thinking about it. I’m not ready to go back home! I love the ocean so much and I have to say that island life certainly agrees with me. Alone time is something that I’ve been severely lacking for several months; I didn’t realize how much I needed this vacation.
April 28, 2014
You know what, I do have some good news to share–I’m not totally consumed with whining and venting about this miserable flare-up that’s going on now (thank God for that, right?).
THE GOOD NEWS: I recently got assigned to write another article for Arthritis Self-Management magazine! The topic is “invisible illnesses.” I’ll be interviewing people who have different kinds of invisible illnesses, not just RA, and how having such a disease affects their lives–and the lives of others around them (family, friends, coworkers, employers, etc.). This “invisible illness” topic is something that’s really important to me not only because it personally affects my life in huge ways, but I know that so many other people are stuck in difficult situations because of it too.
How do you get people to understand what you’re going through when you look “normal” on the outside? How do you avoid being discriminated against because of your illness if you do decide to open up about it with others? How do you find a balance that works? Either people don’t take you and your illness seriously enough, or they judge you because of it. It’s a fine line and I think that many people don’t know how to deal with it–neither the person with the disease nor the caregiver/friend/partner/family member.
For the past 16 years, my default mode has mostly been keeping my mouth shut about my disease while trying to continue pushing forward, and living as normal a life as possible. The danger with this approach is it can lead to intense feelings of isolation and frustration, which I often do feel. I don’t know. Despite living with RA for so many years, I don’t have the answers or feel like I know what I’m doing most of the time. But I’m looking forward to talking with others who also understand what it’s like living with an invisible illness and hearing about their experiences. I’m also excited to be able to spread more awareness about this issue. There is a weird stigma and sense of taboo attached to talking about chronic illnesses, and especially chronic pain. It’s frightening and uncomfortable and awkward, but it’s a real problem. There are too many people out there whose pain and struggles are still invisible.
April 28, 2014
KEEP ON LIVIN’! KEEP ON LIVIN’! KEEP ON LIVIN’…keeps shouting in my head. Well, I did just finish watching The Punk Singer (2013) again (love it!). This Le Tigre song is a catchy tune, but it’s also not a bad mantra to have looping over and over again in my mind at the moment.
Keep on livin’ –easy, right? No. I’m still going through a bad RA flare-up despite taking 30 mg of prednisone for over two weeks. My right foot and ankle are killing me and not much is helping. I have ice strapped to my foot most hours of the day. I’ve got my ankle wrapped in ace bandages and tape and I’m trying to elevate it wherever I am (which is not easy to do when you’re in public). I also took all last week off from work (and today) to try to rest and stay off my feet, despite feeling guilty for doing that–that I was letting my employer, coworkers and myself down.
Well. What can I do? More phone tag with my doctor’s office and nurse. More medications. More MRI scans. More unanswered questions. Desperation elimination diets. Acupuncture? Meditation? Drinking binge? I have no control. And that’s one of the main things I hate about having RA flare-ups–the disease is in absolute control during these times. I don’t know how long this is going to last and I don’t know how much or little pain is going to come from it. The scariest thing is not knowing if it’s going to go away or if I’ll be stuck with a new permanent disability. I keep trying to tell myself to calm down and not panic and not fall into despair because that won’t help anything. And as cheesy as it might sound for me to say this–I am simply trying to just keep on living right now. Living would be a lot easier, though, if my doctor, or someone, could figure out how to help me get better.
October 6, 2013
I’m sorry I’m so late posting this! Things have been a bit crazy in my life (see previous posts). The Arthritis Walk a few weekends ago was a great time and the weather was perfect and beautiful for it. Lots of people came out to participate in the walk and to support arthritis funding for research and to help those who suffer from the disease. It’s always inspiring and motivating to be involved in these types of events because you’re surrounded by positive, energetic people who are all passionate about arthritis issues. Many of the people involved also have some form of arthritis themselves, so it’s nice to be able to talk to people who can understand what you go through living with the disease. All-in-all, a fantastic event! Lots of money was raised, people got outdoors and came together to exercise and cheer each other on. As always, it was fun for me to walk around snapping photos of the walkers and other stuff going on at the walk. And, even though I decided at the very last minute to register as a fundraiser myself for the walk, I managed to raise over $200. Awesome! Thank you to everyone who donated and supported the walk — I really appreciate it.
If you wanted to donate to the walk and didn’t have time, you can still do it! You can make a donation on my page or you can donate on the main Arthritis Walk page too, I think.
Here’s my fundraising page again if you want to contribute something: http://awtwincities.kintera.org/angelalundberg
And here’s the link to the photos I took at the walk on the (Upper Midwest Region) Arthritis Foundation’s Flickr page:
Hope you like them!
August 28, 2013
A new RA website is officially launching TODAY – RheumatoidArthritis.net
It’s a cool site, full of information about rheumatoid arthritis for patients, families, spouses — everyone really! A great part of this site is there is a community of bloggers sharing their personal stories of living with RA. And the exciting thing is, I’m going to be one of their featured regular bloggers! So now in addition to blathering on about medical appointments and swollen joints on this blog, you can read my posts over at rheumatoidarthritis.net too. Whoo! Actually those will probably be a little more organized structurally. And maybe more well-thought-out. Although I do try to not sound like a blubbering idiot on here, too, I swear. Ha ha. In any case, I hope you like the new site and my blog posts.
So check it out! It’s a neat site and I think it will be a helpful resource and source of communication and community for people affected by RA.
July 9, 2013
I’m so angry and frustrated I could scream. I probably shouldn’t be writing about this but I doubt my father will ever read this post (or this blog), so who cares, I guess. As I wrote in a previous post, my dad was diagnosed with prostate cancer this spring (some higher grade cancer cells were found during the biopsy), which has been a very stressful and frightening thing to deal with. Even worse, my dad has been acting like an idiot about it. He put off making a decision whether to have radiation treatment or the prostate totally removed with surgery. We, my family, all wanted him to opt for the surgery because of the risks radiation treatment has, and BECAUSE IT’S CANCER. Get it OUT of your body! I really don’t understand what is wrong with him. He’s been acting like it’s no big deal he has cancer, and it’s been driving my mother and my sister (and me) absolutely nuts. He must be in denial. I understand that surgery is a big deal and a scary thing, but the other choice, having cancer spread and KILL YOU with a MISERABLE DEATH is not a better option. He is also a bitterly stubborn person and is very sensitive whenever he gets the slightest feeling that someone is trying to tell him what to do. He will then be immature and do the complete opposite. So, trying to sit down and talk to him seriously about this stuff hasn’t been very easy or successful. We’ve basically been silenced, tip-toeing around the issue, while growing more and more anxious and upset about it.
Anyway, I found out today from my sister that Dad finally scheduled his surgery but of course he can’t get in right away. His surgery date isn’t until the end of August. He’s been screwing around all spring and summer putting off making a decision about which treatment to have, and then once he decided on the surgery, making the surgery appointment. Also causing stress in my family is that my sister is due to give birth to twins in early October. But as she gets closer and closer to her due date, those twins could arrive at any time. And she is going to need a lot of help from all of us – me, Mom, and DAD. How can we help her while he is recovering from surgery? This is really bad timing, but it didn’t have to be. If he would have made the appointment and had the surgery already we wouldn’t be worrying about this. Worrying about the cancer having more time to spread. Worrying about my sister getting dangerously close to bed rest and giving birth. My poor mother is about to have a nervous breakdown right now. And my dad? He doesn’t care, apparently. So today I have been making phone calls to the surgery scheduling department and his urologist’s nurse. I feel guilty and sneaky making these phone calls behind my dad’s back and he would kill me if he found out I’m meddling in his health business. But we desperately need to move this surgery date up on the calendar. Although after speaking with the scheduler just now, I fear it’s too late, unless another patient cancels. I’m so mad. I can barely take care of managing my own health; I don’t have the energy to deal with my dad’s medical issues when he is perfectly capable of doing it himself. But he’s always been very nonchalant when it comes to his health. I am the total opposite. As soon as I don’t feel well I’m on the phone with the doctor’s office, making appointments, playing phone tag, until I’m sure that everything’s okay. Good God, if I were diagnosed with cancer I’d be making an appointment for surgery the next day. How he just doesn’t give a crap is unbelievable. Is this a preview of what’s to come as he ages and will need more medical care? So far in all of his 66 years he’s been lucky to not have hardly any health problems. Things can’t stay that way forever. But he’s still too young to be acting like an immature, senile, self-centered old man.
In addition to being worried about my dad, another part of this that really bugs me is that I feel so frustrated when I see other people refuse to take responsibility for their health. I work incredibly hard at trying to manage my own (which most people don’t realize). And trying to make myself be as close to a normal, healthy person as possible — yet all the while feeling great frustration, loss, anger and sadness at the realization that my disease will never go away and I can’t ever be totally “normal” or healthy. People who don’t even have a chronic illness to deal with, yet still don’t care about taking care of themselves really irritate and disgust me. It’s like a big slap in the face to those of us who are working hard to be healthy.
Maybe this post sounds harsh, and I know I’m stereotyping all over the place here. But needless to say, I am just so upset right now.