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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Best of RA Blogs 2012

August 14, 2012

While I was gone I got a nice surprise in my email inbox – a notification that my blog had been chosen as one of Healthline.com‘s best RA blogs of 2012. Check it out:

“22 Best Rheumatoid Arthritis Blogs of 2012″

(you have to scroll through the pages/slideshow to find mine)

Home

August 13, 2012

Sarajevo, Bosnia, 2012

Hello from Minneapolis! I am actually somewhat glad to be back, surprisingly. Usually when I come back from trips abroad I’m depressed for quite a while afterwards. Since arriving back home from Dublin late Friday night, I’ve felt pretty energized and motivated and in a decent mood. I miss my friends a lot, of course, but I’m feeling positive about finally making some important decisions about my future, regarding my career, moving, creative projects, etc. While the trip was really fun, it was also physically demanding and exhausting, so I’m glad to be home to finally get some rest and to attend to my joints which seem to be exploding with inflammation. This afternoon I left a message for my rheumatologist’s nurse about wanting to discuss with my doctor other treatment options and needing help with what to do next about this stubborn right foot and ankle. Hopefully she will return my call tomorrow and we can get the ball rolling. Strangely, the weather here right now is cooler and less humid than in Dublin and Berlin, so that’s making me feel better.

Also in health news – sadly, I think I have gained back some of the weight I lost just before I left on my trip. Even though I was walking a lot, my careless mass consumption of Croatian/Bosnian/German/Irish beer and delicious bread and pastries probably didn’t help the situation. So now it’s back to tracking calories, self-sacrifice, and near-starvation. I’ll find out what the damage is when I weigh-in Friday. Can’t wait. I did go on a little bike ride today though and that felt good. I’ll have to work my way up to two rides a day again and I’d also like to start swimming on a regular basis, if I can muster the energy to drag myself to the pool (I blame laziness and inconvenience for current procrastination). But seriously, during the entire trip I kept thinking about how much I really do want to be healthier physically and to continue losing weight. It will be a challenge to get back on track after nearly a month, but I think I can do it.

So, that’s the update for now. I took a million photos and I’ll post a link once I get them uploaded if anybody wants to see them.

As always, thanks for reading!

Angela

Hallo aus Berlin!

July 31, 2012

The Berlin Wall, East Side Gallery

Guten Tag! Hello from Berlin, Germany. I arrived late Saturday night from Dubrovnik, Croatia. Sorry I haven‘t posted until now but I‘ve been running around with friends in Croatia and Bosnia for the last week and finding fast, convenient Internet access challenging. There have been many challenges on this trip, not surprisingly, but I‘m glad that I decided to do the trip and meet up with friends over here. Croatia and Bosnia were beautiful and incredibly interesting places despite the oppressive heat of Croatia. Swimming in the Adriatic Sea felt surreal, surrounded by gorgeous, towering mountains. We tried to hit the beach quite a bit which was cool and swimming in the sea helped ease the pain and throbbing of my continually swollen right foot and ankle. The intense heat and humidity of Croatia (Bosnia was better, thankfully) definitely was not good for my RA – my foot and ankle ballooned to a disturbingly large size by the end of each day. But I just tried to deal with it the best I could, like I am doing right now in Berlin. Luckily the weather is much cooler here so I feel better overall physically. Traveling is exhausting though – I always forget that until I‘m back doing it again, dragging heavy luggage and bags, walking miles, rushing through airports. Then I think, Why am I doing this to myself? Because I love to travel. I think? No, seriously, I do love traveling to new places, and especially to different countries. But traveling while living with a painful chronic illness is very difficult. And it takes patience and empathy and understanding from those around you, your traveling buddies and friends, and from yourself. I have to keep reminding myself that it‘s okay to go slow and to take my time and to listen to how my body feels. Getting upset because you can‘t make it to all of the sights isn’t worth it. It also isn‘t worth it to feel guilty or anxious that you might be holding others back or slowing them down because of your own physical limitations. However, that is easier said than done. I admit I‘ve been struggling with that since the start of the trip. I hate feeling like a burden or that my RA is annoying other people. They are friends, so they should be understanding of course. But even friends can‘t really understand what it‘s like to just get through a normal day while being in considerable pain, never mind running around to different countries and cities.

Anyway! I am having a great time and it‘s been fun seeing old friends again, whom I haven‘t seen since 2007 (wow -it’s also kind of freaking me out thinking about how much time has passed). Visiting Croatia and Bosnia (Mostar, Sarajevo) are my favorite parts of the trip so far and I definitely want to go back there. It‘s been cool seeing old ‘haunts‘ in Dublin and Berlin too, despite feelings of disorientation and bittersweet nostalgia I‘ve been experiencing. I‘m mostly just trying to have fun with friends and to do my own thing a bit (taking photos) which will hopefully give me some much-needed motivation to get my own life in order when I get back home.

Well, I think it‘s time to end the rambling here. The sun is shining in Kreuzberg now (the area in Berlin where I‘m staying) and I should get out of the house and go for a bike ride or hit some museums. Time flies when you‘re drinking giant mugs of beer and embarrassing yourself speaking broken German.

Tschüß!
Angela

P.S. Good news – I am still losing weight, despite basically having to throw my pre-trip “diet” out the window. I‘m guessing I‘ve lost at least a total of 10 lbs by now. I‘m excited to weigh-in once I get back home!

Joy!

July 14, 2012

I received some wonderful news today when I went to my doctor appointment -

I’VE LOST SEVEN POUNDS!!!

Incredible! Especially since I’m currently taking 15 mg of prednisone. Wow. I’m beyond happy about this. And, if I keep doing what I’ve been doing, I should continue to lose more weight (says my doctor). The last time I was weighed there was about three weeks ago. I’m so ecstatic and relieved that my “dieting” and tracking calories is finally starting to pay off. Maybe my metabolism isn’t dead after all?

Well, I just wanted to write a quick post to share with you all my good news. I’m going up north early tomorrow morning for an annual family event and I’m really looking forward to that. However I know there will be a lot of bad food temptations there this weekend and I’ll have to work extra hard to control myself. But I can do it, right? The temperature is also supposed to be in the 90s with high humidity again. Ugh. Maybe it will be too hot to eat. Ha.

Happy weekend!

Angela

NE Minneapolis, 2012

I can’t believe it’s July already; so many things have been happening – good and bad, as usual. I’ll get the bad out of the way first, I suppose. With great frustration, I’m back on prednisone again because my right foot (toes, ball of my foot) has been flaring up pretty bad for the last 2-3 weeks. It’s definitely swollen and my toes hurt and are tender to the touch. My right ankle has also been worse, so basically I just want to chop off my entire right foot starting at the ankle. For the past month I’ve been working so hard on improving my diet and tracking calories in order to lose weight, and being back on prednisone is making this even more of an uphill battle. I’m simultaneously really angry and depressed about it. And about the fact that I don’t seem to have lost one single pound yet, despite drastic calorie cutting and an increase in my bike riding. I don’t know what to do except keep on with it and try to have patience. I did make an appointment to see an endocrinologist at the University of Minnesota Medical Center’s Weight Management Clinic. I have to wait FOREVER to get in to see the doctor though. But once I get in for my appointment I really hope someone can help me. Doing all of this work with no results is really disheartening. I think my metabolism is dead.

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Lifescript!

June 17, 2012

Exciting news – I was just published on lifescript.com last Friday! They wanted to do a little compilation of some of my blog posts for their site. Cool, eh? Here’s the link:

“My RA: A Year with Rheumatoid Arthritis”

I was a bit worried that I come across as sounding too whiny and negative, but I was assured that that wasn’t the case. Okay, I hope so! It’s always hard to look back at things you’ve previously written and not cringe somewhat, right? But anyway, I’m very happy and honored that Lifescript wanted to publish my posts. It’s a great health site – check it out if you haven’t already!

I know I’m overdue for an update post, especially when so much has been going on lately (I’ve been losing-my-mind-busy). If I can gather up the energy I’ll do one tonight!

Hope you’re all doing well out there…

Angela

Creaky Joints post

May 31, 2012

Well! I just got a good surprise! I discovered that my guest blog post for Creaky Joints was published last week. I didn’t even know! It’s really cool to see it published and I’m grateful they gave me a chance to post something for their site. Hopefully I can do more of it sometime in the future.

Here’s the link if you want to check it out!

After being diagnosed with Rheumatoid Arthritis, Angela learns that volunteering is the best medicine

Memorial

May 28, 2012

Happy Memorial Day! Or, Happy Memorial Day weekend! I hope you’re all having a lovely weekend. Mine has been kind of a blur when I stop to think about it. What did I do anyway? Yesterday I went with my parents to visit my grandparents who are buried at Fort Snelling National Cemetery, as well as my aunt at Lakewood Cemetery and my other grandparents at Crystal Lake Cemetery in Minneapolis. I don’t go to cemeteries that often but whenever I do, I’m always glad I went. I love how peaceful they are and how they give you a chance to stop and really remember those you love and the part they played in your life. It’s sad, but comforting as well, I think.

We don’t get out to Fort Snelling that often because it’s kind of out of the way, but I was really glad we went. I still miss all of my grandparents very much; I think I actually miss them more as time passes. I especially miss Nana and Papa, who we visited at Fort Snelling yesterday. My grandma, “Nana,” suffered terribly from rheumatoid arthritis herself until her death. She was such a strong woman though, in so many ways. She always wanted to do things and go places and keep learning in life despite being in so much pain and increasingly disabled from the RA. She also always encouraged me and the rest of her grandchildren to live the same way and to not take life for granted. “Get your education!” she always said. Even though she used to drive me crazy sometimes (she was an opinionated Italian from New Jersey), I admire her immensely. She was her own independent person and most importantly, she was a loving, caring woman who selflessly gave so much to those she loved. All of the work I do to support funding for arthritis research, arthritis advocacy, and arthritis awareness I do not only for myself and the friends I know who also have the disease, but I do it for my grandma. I grew up watching her suffer so much from RA, yet she didn’t let it drag her down. She deserved to have a pain-free life, as do so many others living with the disease today.

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