October 23, 2013
Living with a chronic invisible illness such as RA can be tough, for several reasons. Just because you might look “normal” and healthy on the outside, that doesn’t mean you aren’t actually dealing with a lot of pain on a daily basis–physically and emotionally. Sometimes family, friends, co-workers, bosses, and even doctors can be surprisingly insensitive and judgmental regarding this issue. Here’s a recent blog post I wrote for RheumatoidArthritis.net about the pain of living with an invisible illness:
Thanks for reading!
October 17, 2013
Here’s a link to my latest blog post that was just published tonight on RheumatoidArthritis.net!
I received some really happy, surprising news when I went to my last doctor appointment on Monday. I stepped onto the scale for my regular weigh-in and when I saw the numbers flash on the screen I almost fell off of it. I LOST WEIGHT! Crazy. Well, it seems crazy because for the last month or so (or, um, all summer?) I’ve fallen off the weight-loss wagon and I haven’t been doing anything or really paying attention at all to what I’ve been eating. Actually, I feel like since I started the substitute para job at the high school about a month ago that I’ve been eating much worse and indiscriminately scarfing down whatever junk I feel like eating (gallons of coffee, Diet Coke, fast food, burritos, chocolate, pasta, bread, etc.) But hey, I don’t want to complain about this mysterious drop of pounds. I’m ecstatic that I’ve lost about 4-5 lbs. over the last month and I can feel that my clothes are looser too. Now I just have to keep on losing to finally get to where I want to be, which is about 30 lbs less than I weigh right now.
But anyway–my latest blog post on RheumatoidArthritis.net goes more into the difficulty of losing weight while having a painful chronic disease like RA and my personal struggles with it over the years. But I’m going to use this terrific, inspiring news of my recent weight loss to motivate me to get back on track with healthy eating and exercise. I really do want to be healthy. Losing weight is a smart goal to have, for so many reasons.
October 13, 2013
September 13, 2013
I had my bi-monthly Remicade (infliximab) infusion a week ago which was exciting and fun as usual (not). But I’m thankful for it, especially because my stubborn right ankle and foot have been flaring up worse again lately. Why? Stress? I’m guessing stress. Or else God hates me right now. Maybe both. But seriously, it’s painful and irritating and annoying and I don’t have time to deal with it. I also really don’t want to go back on prednisone, which I’ve been lucky to be off since early June. Will I ever be off of that evil yet wonderful drug for a whole year again? I wonder. But back to stress — there’s been a lot of it going on in my life the last few months. Well, all summer really.
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!