July 9, 2013
I’m so angry and frustrated I could scream. I probably shouldn’t be writing about this but I doubt my father will ever read this post (or this blog), so who cares, I guess. As I wrote in a previous post, my dad was diagnosed with prostate cancer this spring (some higher grade cancer cells were found during the biopsy), which has been a very stressful and frightening thing to deal with. Even worse, my dad has been acting like an idiot about it. He put off making a decision whether to have radiation treatment or the prostate totally removed with surgery. We, my family, all wanted him to opt for the surgery because of the risks radiation treatment has, and BECAUSE IT’S CANCER. Get it OUT of your body! I really don’t understand what is wrong with him. He’s been acting like it’s no big deal he has cancer, and it’s been driving my mother and my sister (and me) absolutely nuts. He must be in denial. I understand that surgery is a big deal and a scary thing, but the other choice, having cancer spread and KILL YOU with a MISERABLE DEATH is not a better option. He is also a bitterly stubborn person and is very sensitive whenever he gets the slightest feeling that someone is trying to tell him what to do. He will then be immature and do the complete opposite. So, trying to sit down and talk to him seriously about this stuff hasn’t been very easy or successful. We’ve basically been silenced, tip-toeing around the issue, while growing more and more anxious and upset about it.
Anyway, I found out today from my sister that Dad finally scheduled his surgery but of course he can’t get in right away. His surgery date isn’t until the end of August. He’s been screwing around all spring and summer putting off making a decision about which treatment to have, and then once he decided on the surgery, making the surgery appointment. Also causing stress in my family is that my sister is due to give birth to twins in early October. But as she gets closer and closer to her due date, those twins could arrive at any time. And she is going to need a lot of help from all of us – me, Mom, and DAD. How can we help her while he is recovering from surgery? This is really bad timing, but it didn’t have to be. If he would have made the appointment and had the surgery already we wouldn’t be worrying about this. Worrying about the cancer having more time to spread. Worrying about my sister getting dangerously close to bed rest and giving birth. My poor mother is about to have a nervous breakdown right now. And my dad? He doesn’t care, apparently. So today I have been making phone calls to the surgery scheduling department and his urologist’s nurse. I feel guilty and sneaky making these phone calls behind my dad’s back and he would kill me if he found out I’m meddling in his health business. But we desperately need to move this surgery date up on the calendar. Although after speaking with the scheduler just now, I fear it’s too late, unless another patient cancels. I’m so mad. I can barely take care of managing my own health; I don’t have the energy to deal with my dad’s medical issues when he is perfectly capable of doing it himself. But he’s always been very nonchalant when it comes to his health. I am the total opposite. As soon as I don’t feel well I’m on the phone with the doctor’s office, making appointments, playing phone tag, until I’m sure that everything’s okay. Good God, if I were diagnosed with cancer I’d be making an appointment for surgery the next day. How he just doesn’t give a crap is unbelievable. Is this a preview of what’s to come as he ages and will need more medical care? So far in all of his 66 years he’s been lucky to not have hardly any health problems. Things can’t stay that way forever. But he’s still too young to be acting like an immature, senile, self-centered old man.
In addition to being worried about my dad, another part of this that really bugs me is that I feel so frustrated when I see other people refuse to take responsibility for their health. I work incredibly hard at trying to manage my own (which most people don’t realize). And trying to make myself be as close to a normal, healthy person as possible — yet all the while feeling great frustration, loss, anger and sadness at the realization that my disease will never go away and I can’t ever be totally “normal” or healthy. People who don’t even have a chronic illness to deal with, yet still don’t care about taking care of themselves really irritate and disgust me. It’s like a big slap in the face to those of us who are working hard to be healthy.
Maybe this post sounds harsh, and I know I’m stereotyping all over the place here. But needless to say, I am just so upset right now.
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 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)