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.
August 11, 2013
Well, this is a nice surprise! About a week ago I received an email announcing that my blog has been chosen as one of healthline.com‘s best rheumatoid arthritis blogs of 2013.
Check out the other 19 blogs that were chosen, in no particular order:
July 15, 2013
I went up north (northern Minnesota, for those of you not familiar with the “up north” expression) this last weekend for an annual family event/get-together. The weather was mostly cloudy and rainy which is a major departure from the usual scorching, unbearable heat that happens that July weekend. I stayed with my cousins, aunt and uncle, and some other family friends in an old farmhouse just outside of the town of Osakis. Even if the weather wasn’t perfect, I just loved getting out of the city for the weekend and away from the stress of “normal life.” I’ve always fantasized about living in a small town or out in the country for a summer, and I still think about it. Would I really like it? I know it seems like I’ve been doing a ton of traveling over the last few months, which is true. But I still feel like I need some sort of vacation. I feel like I can think about things so much easier and clearer when I’m away from home. And really, I need to focus and start making some major decisions here. I’m tired of floundering around, feeling like I don’t know what the hell I’m supposed to be doing, or how to do it. Although it is admittedly difficult to stay on track with things when your life is constantly being interrupted and derailed by chronic illness and everything that goes along with it (flare-ups, doctor appointments, physical therapy appointments, sickness, fatigue). But anyway — this post doesn’t have much of a point, I guess, except that it was good to get away, and I would like to go back to Osakis again before the end of summer. Realizing the things that make you feel good and better is an important part of healing and managing your health, I think. I don’t know why it’s such a struggle sometimes.
Hope you all had a happy weekend!
July 1, 2013
“It does not matter how slowly you go as long as you do not stop.”
- Confucius (551 – 479 BC)
For almost a week I’ve been trying acupuncture treatments again at the Traditional Chinese Medicine (TCM) Health Center. I’ve had acupuncture there in the past and had a good experience, I just never stuck with it long enough to see any results. This time I’m determined to be more strict and diligent, so I’ve been going every day now since last Thursday (well, I missed Sunday though). The Chinese doctor advised that I go every day for two weeks at first because of the amount and severity of my various health problems: rheumatoid arthritis (especially that stubbornly swollen and inflamed right foot and ankle), debilitating tension headaches, jaw pain, gastrointestinal problems, sinus congestion/infections, fatigue, anxiety, inability to lose weight. As previously mentioned in this blog, I’ve been dealing with the right ankle swelling and pain since 2005, so that’s nothing new and I’ve been forced to get “used” to it in some sense. But recently my tension headaches (which include terrible jaw, neck, upper back and shoulder pain) have been flaring up with a vengeance, and that’s what made me decide to try acupuncture again. I’ll also be starting physical therapy for the headaches later this month at the Minneapolis Clinic of Neurology. I had physical therapy there for the same thing over 10 years ago which helped. During these past couple of months of the headaches flaring up, I’ve been trying to remember to do my stretching exercises and to be aware of my posture and all of that stuff, but it’s not really working. Even taking pain killers and muscle relaxers isn’t doing much, so I decided I need some extra professional help with this.
Why am I getting the headaches again so bad? Well, I think the jaw pain I’ve been having from clenching my teeth has a lot to do with it. Basically I’m just always a giant knotted ball of stress and that’s how I deal with things –unconsciously tensing up my muscles and not realizing I’m doing it until it’s too late and everything is an inflamed, painful mess. I suppose I’m going to have to break down and get one of those attractive mouth guards to help with the teeth clenching, but I don’t want to do that. I have enough problems breathing at night due to sinus problems and nasal congestion. Ugh. Can someone just come over and chop off my head for a couple hours and then put it back on? I think that would feel pretty fantastic. So yeah, I’m stressed. Always. And I already deal with the chronic pain from RA, which probably adds to my stress and tension in ways that I don’t even realize. How do you deal with arthritis pain on a daily basis without unconsciously tensing up and doing harmful weird things to the rest of your body?
Another question for you guys — have any of you tried acupuncture before? Or other “alternative” treatments? I’ve also been taking an herbal supplement from the TCM center to help with my digestive problems. My stomach does feel better, so maybe that’s working?
In conjunction with starting acupuncture and the herbs, I’ve been trying really hard to get back to eating healthier – - whole foods, less wheat and gluten, less/no dairy. AND I really want to lose more weight. I’ve hovered at around the same weight for a year now, after I lost 10 pounds last summer. I just can’t seem to get rid of it! But, I’m not giving up. I’ve started tracking my food again using Spark People and trying to ride my bike at least once a day. Kicking the Diet Coke habit is another important goal I’m trying to stick with — I’ve been trying to replace it with homemade iced tea with lemon and lime when I have an urge for something other than water. And hopefully the acupuncture will also help increase my seemingly dead metabolism. The place on my leg that controls digestion and metabolism was really sensitive and throbbed with pain today during my treatment. The doctor explained that the spot is a very important acupuncture point and she’s not surprised I felt a lot of pain there. So, hopefully that means SOMETHING is working?! Acupuncture is so strange — how in some spots you can’t even feel the needle going in, but with others you might feel a lot of pain and sensation. Interesting. I’d like to read and learn more about it, actually.
I feel like my body is extremely sick and broken lately. But I know it’s up to me to take the steps to change this. I really want to get better.
June 7, 2013
Well, I just got off the phone with Fairview in response to the multiple collections phone calls they’ve been making to me while I was in New York. It looks like I have a total Fairview bill of about $1,800. And I know I have like $500 due to The University of Minnesota Physicians. My, ah, bank account currently holds about $45. I almost choked when I logged into my account today and saw what my Visa bill is. Okay, the Visa bill isn’t a huge surprise since I’ve been spending like crazy on traveling lately and I’ve barely been working full-time. The medical bills are pretty daunting though – especially when I was only getting paid $9/hour for substitute teaching over the last month (ridiculous). Nobody likes to listen to other people whine and moan about money problems, I know, so I apologize for this venting. I just think it’s unfair that my health insurance costs so much in the first place, and then to have all of these other expensive medical bills on top of that. There are others out there who are in much worse shape than I am, I know, and I feel really awful for them. Dealing with the stress and worry of medical bills while you’re already trying to manage a painful chronic illness kind of stinks.
Okay, my venting is finished (for now). I have other positive, awesome things to write about, such as my New York trip, and plans for the future. Stay tuned!
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 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!