Ft. Myers Beach, FL

Ft. Myers Beach, FL

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!

Goodnight,

Angela

Juvenile Arthritis March, Bloomington, MN, 2013

Juvenile Arthritis March, Bloomington, MN, 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!

JAM 2013 Photos

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!

Happy Spring!

(there’s still snow here, ugh)

Angela

JAM 2013

March 2, 2013

JAM 2012, Mall of America, Bloomington, MN

JAM 2012, Mall of America, Bloomington, MN

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:

The Juvenile Arthritis March (JAM) 2013

Employment discrimination

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.

capitolblog

The U.S. Capitol, Washington, D.C., April 2012

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.

Emily on Capitol Hill

Emily on Capitol Hill, 2012

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.

Minnesota girls on Capitol Hill, 2012

Minnesota girls on Capitol Hill, 2012

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!

We are made for this moment

January 22, 2013

obamapinsblog

Happy Inauguration Day (yesterday)!

“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:

The Washington Post – President Obama’s Second Inaugural Address

Mayo Clinic update

December 15, 2012

mayotreeblog

The Mayo Clinic, Rochester, MN

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.

Arthritis Self-Management

December 2, 2012

ASMblog

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 lunda7@yahoo.com.

Mayo rejection

September 11, 2012

UPDATE 9/28/12:

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.

Cooler weather, happier me

September 11, 2012

Palmer Lake, Minnesota, September 2012

It’s getting to be mid-September already and the weather has been cooler and less humid. However today it was a bizarrely balmy 95 degrees. What? Crazy Minnesota weather, I guess. Fall is my favorite time of year anyway, but I love it even more because the drop in temperature and humidity makes my body and aching joints feel so much better – especially my stubborn right ankle. Since returning from my trip to Europe a month ago, I admit I’ve been having trouble staying energized and motivated to get my life together and to get back on track with health stuff (diet, exercise, weight loss, doctor appointments, ankle). However, I did go on a long bike ride around Palmer Lake a couple days ago – twice around the trail! So that’s about eight miles total. My hardcore bicycling friends would probably find that distance rather wimpy, but it was the first time I ever did that, so I was pretty happy and proud. But, um, I haven’t been on my bike since then. Er. TOMORROW! I just can’t ride my bike or do any kind of exercise in 90 degree heat, and I think that’s understandable.

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