May 31, 2013
The Pfizer summit today was really excellent – professional, well-organized, interesting, FUN! It was exciting and inspiring having the chance to meet and talk with other bloggers as well as the people from Pfizer and Twist Marketing. Everyone has been so warm and welcoming and just really a pleasure to talk to and work with during this event. I’m impressed. This is obviously not a very long or detailed update, but I wanted to write something quick before I fall into a sleep coma (exhausted). I just got back to my hotel after taking a little stroll around Times Square tonight with two awesome young women bloggers from the summit. They’re both flying back home tomorrow which I’m bummed out about, but hopefully we will keep in touch and we can meet up again soon. I happily have a feeling that there’s a pretty good chance of that. SO –breakfast with the ladies tomorrow morning…maybe the MoMA with Britt, AKA The Hurt Blogger? I’m kind of just “winging it” while I’m out here, but that’s okay, and actually pretty fun.
More soon – I promise!
Hello from NYC!
This is just a quick first post because I’m running late (as always). I arrived here yesterday for a rheumatoid arthritis blogging/social media summit organized by Pfizer. Today is the actual event (in five minutes!) and we’ll be heading over to Pfizer’s headquarters. Last night we had a really nice dinner and I got to meet some of the other people who are here for the summit – a group of fantastic ladies! I’m excited to talk with them again today and to hear more of their own arthritis stories and what they’re doing regarding arthritis advocacy and social media outreach.
So – now I have four minutes to run downstairs at my hotel to meet the group. Better go! I will definitely post again later today/tonight. If I don’t die from heat/sweat stroke. 90+ degrees again today?
I still can’t believe I’m finally here, seeing New York City for the first time.
May 2, 2013
I meant to post this last week but time got away from me, it seems. Funny thing, I received this “threatening” collections letter the day I had my last Remicade treatment – which is also the day I read a really fascinating Time magazine article titled, “Bitter Pill: Why Medical Bills are Killing Us” by Steven Brill. It’s from Time’s March 4, 2013 issue and I luckily found a copy at the clinic so I snatched it up to read while being hooked up to my Remicade I.V. for three hours. Good decision! Although after reading the article (and in the middle of reading it), I became so infuriated and upset, because much of what Brill writes about has affected my life in similar ways. Unfortunately you have to pay to read the article online, but it’s really worth it. Everyone should read it – especially if you go to the doctor often, have a lot of medical expenses, or have any kind of health condition.
The article profiles several different patients and tells their stories about how they racked up huge medical bills, mostly from hospital expenses. Whether a cancer patient, an ER patient for heartburn thought to be a heart attack (and a $21,000 bill for that), the recipient of an overpriced implanted medical device, or a patient injured from a simple fall, one thing is constant in all of these stories – everyone was drowning in thousands, even hundreds of thousands of dollars of medical bills. And the majority of the medical costs of these bills were grossly inflated and overpriced. Luckily I have managed to stay out of the hospital so far this year, but since January 1 I have accumulated a lot of medical debt due to doctor office visits, MRI and X-ray scans, prescription drugs, and expensive I.V. treatments for my RA. Let’s also add the bills for my psychologist appointments that I find necessary to help me stay sane trying to navigate all of this health crap on a daily basis. I feel like I’m going to the doctor all the time, even when I sometimes do cancel appointments (especially the therapy appointments) just to save money. Or I try to hold off on making appointments until after I’ve met my deductible and out-of-pocket maximum for the year. I’ve heard stories from many other people who also go without their medications, treatments, or doctor visits because they can’t afford it. This, I feel, is simply wrong. Nobody should have to sacrifice his or her health because of financial reasons. But the way our healthcare system is set up, that is exactly what patients are pressured to do if they can’t afford their medical bills. Go into massive debt? Declare bankruptcy? Lose your house? Risk your life? It’s such a racket, with your dollars lining the pockets of the CEOs and administrators of many health care and hospital systems – especially these so-called “nonprofit” hospitals that are actually making huge profits.
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!
April 6, 2013
Where has the time gone?! Seriously. I’m sorry it’s taken me so long to post these JAM photos, but here you go! The annual Juvenile Arthritis March was held March 2, at the Mall of America, and it was a great success. It was the busiest I’ve ever seen it in the four years I’ve been photographing the event. And a record amount of money was raised this year – over $153,000! Anyway, here’s the link to the photos I took. Enjoy!
Two days after JAM, I went to Washington, D.C. for the Arthritis Foundation’s Advocacy Summit. Once again that was a fantastic, inspiring experience. I’ll write an update post about D.C. and the Summit soon!
(there’s still snow here, ugh)
March 2, 2013
Good morning! Why am I awake at 5:00 AM? The Juvenile Arthritis March (JAM) fundraising walk is this morning at the Mall of America! I’m taking photos again for the fourth year, I think? It’s always such a great, positive event – usually with a large turnout. I’ll post a link to the photos once I get them uploaded. Although I’m not sure if I’ll have time to do that before I leave for the Advocacy Summit in D.C. Monday morning. Yikes! I can’t believe I’m leaving so soon for that already.
More info about JAM can be found here, if you’re interested:
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!
January 22, 2013
“We hold these truths to be self-evident, that all men are created equal; that they are endowed by their Creator with certain unalienable rights; that among these are life, liberty, and the pursuit of happiness.” - The Declaration of Independence, 1776
So I am a day late posting this, but better late than never, right? I didn’t tune in to ALL of the inauguration coverage that was happening yesterday (and before yesterday), but I did catch some of it and listened to President Obama’s speech, which I liked. I’m glad that he mentioned health care reform in it, because of course that is something I am passionate about and support. Publicly debating politics or getting preachy about political issues isn’t really my thing, but I will stand up for what I believe in and I don’t expect others to agree with me. I voted for Obama again this election, as I did four years ago and I’m incredibly happy that he won. I suppose I would consider myself a Moderate Liberal – more fiscally conservative but socially liberal. I’m not for outrageous wasteful government spending (who is, really?), but I also believe in many of the social programs that exist to help people. And of course health care is a huge issue for me and one that has affected my own life, very personally, in so many ways. Speaking of that – I’ve been having some major health and arthritis-related things going on over the last month, which I will update about after this post. I promise!
Health care should not be a luxury or privilege for few, but it should be seen as a basic human right, and this I believe with my whole heart and mind. I don’t blindly think President Obama or the Democrats are perfect by any means, but I do sincerely hope that the President and people across all parties will realize the importance of improving our corrupt, archaic, and broken health care system and will do something about it. There are too many people suffering just in our own country because they can’t get decent, affordable medical care when or if they need it. This is wrong and must change.
Anyway, here are some quotes from President Obama’s speech yesterday that stuck with me:
“For we, the people, understand that our country cannot succeed when a shrinking few do very well and a growing many barely make it.
We, the people, still believe that every citizen deserves a basic measure of security and dignity. We must make the hard choices to reduce the cost of health care and the size of our deficit.
We do not believe that in this country freedom is reserved for the lucky or happiness for the few. We recognize that no matter how responsibly we live our lives, any one of us at any time may face a job loss or a sudden illness or a home swept away in a terrible storm. The commitments we make to each other through Medicare and Medicaid and Social Security, these things do not sap our initiative. They strengthen us.
It is now our generation’s task to carry on what those pioneers began, for our journey is not complete until our wives, our mothers and daughters can earn a living equal to their efforts.
That is our generation’s task, to make these works, these rights, these values of life and liberty and the pursuit of happiness real for every American.”
To read the entire transcript of President Obama’s speech, go here:
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 firstname.lastname@example.org.