Okay. I’m guilty of neglecting my blog and, by extension, you. But the fact is, I’m doing well so I’ve been busy off doing other things. Sorry. (No, not really.)
I recently spent nearly a week in London with some other amazing advocates from the US, UK, and Europe at a patient advisory panel and I’m going to have the opportunity to provide the patient’s voice to a much, much wider audience in the near future.
I’ve been working part-time and am about to take on a second client. It’s not a lot, but it’s enough to keep my brain working and I get to interact with some amazingly bright, talented people. Plus it brings in a few bucks to supplement the bit of fixed income I get every month.
And in a month or so, hubby and I are going transatlantic on a cruise for 15 days winding up in Amsterdam where we’ll spend another few days before coming home.
On the RA front, I’m doing pretty well. I’ve been on my current treatment for more than two years (I think that’s a record). I went off methotrexate last July and I’ve happily stayed off of it since then. I think I would actually feel better with the methotrexate and more frequent infusions, but I’m happier with less medication and I’m doing well. Today I walked more than a mile for the first time in ages.
I tell people that I’m doing well, for me, which is true. But with me, there is always something going on. We’re in watch mode for a spot on my mammogram and some marginal labs. But neither are interfering with how I feel and I’m not going to worry about them until I have something to worry about.
So I’m sorry I’ve neglected you but glad that there are good reasons. I hope you have good reasons to think about things other than RA as well. Thanks for checking in.
One of the things that pharmacy benefit managers (PBMs) do is prohibit pharmacists from telling patients when they could save money by paying cash rather than using their insurance plan. In fact, according to a recent NBC Nightly News segment, pharmacists can be fined thousands of dollars for telling patients they can save money. According to the New York Times (as reported by the Dallas Morning News here) much of the difference between the lower “cash” price and the higher “insurance” price goes directly into the pockets of the PBMs.
Fortunately, state lawmakers are taking aim at these so-called “gag clauses,” helping ensure that patients are informed of the lowest price for a medication. The Alliance for Transparent and Affordable Prescriptions (ATAP) reported that Virginia is the latest state to have passed a bill addressing the PBM practices. Virginia’s HB 1177, currently waiting for the governor’s signature, ensures that PBMs allow pharmacies to tell patients when a more affordable option is available and to sell them the more affordable alternative when requested.
Virginia joins Connecticut, North Carolina, Georgia, Maine, and North Dakota that currently have enacted similar laws and a dozen other states are considering legislation to prohibit gag orders.
As discussed in my earlier post, PBMs wield an incredible power when it comes to both access to and cost of medications. PBMs are the organizations that basically set the rules for drug insurance plans. PBMs decide, for example, if medications are even covered (in formulary), at what tier (cost level) they’re covered, and whether other drugs must be taken first (step therapy). These practices have come under scrutiny as whether they might actually be harmful to patients by delaying or even denying access to needed treatments.
On the other side of the discussion is the Pharmaceutical Care Management Association which represents PBMs and which, among other activities, has filed suit to keep these laws from being enforced.
I understand that managing pharmacy benefits is a highly complex business. Like any other supply-chain model there are elements of supply and demand and the need to balance margins across an incredible array of highly sophisticated medications. But medicine needs to be about the patient and purposefully deceiving patients about the cost of their medications does not meet this critical standard.
Since my last post, I’ve gotten some questions about alternate day fasting (ADF), specifically what I eat on my “skinny” days. As a quick recap, ADF is just that. You eat up to 500 calories on every other day. I do a modified version where I eat 500 calories on Monday, Wednesday and Friday and then eat whatever I want to on the other four days. It’s weird that I don’t feel deprived on my skinny days, but I’m starting to appreciate the large quantity of food on the plate on the “regular” days, especially when we go out to eat. I can no longer finish a restaurant meal.
You can actually get a lot of food in 500 calories if you do it right. For example, two Hershey’s kisses is about 44 calories — or about the same as an entire cup of watermelon, and a cup of watermelon is much more filling. So my goal is to get the most food for my calories so that I neither feel hungry nor deprived. And you can eat whatever you want on the skinny days. If you absolutely MUST have some chocolate on skinny days, then the 22 calorie Hershey’s kiss is probably a good, satisfying, low-calorie idea.
I generally keep my breakfast to 100 calories and my lunch and dinner to 150 calories each. That gives me 100 “flex” calories during the day if I want a snack (celery) or I can save them for a short glass of wine in the evening. (Chardonnay has about 120 calories …) My typical day (below) is a bit heavy on the carbs, but a lot of that is fiber which keeps me from being hungry. And at 500 calories, that’s only 100 carbs for the whole day if I ate nothing else. But it’s important (at least for me) to get some protein in every meal to help keep you full.
Here’s a typical skinny day:
Breakfast: 1 cup (5.5 oz) of cantaloupe (56 calories) along with either a slice of turkey bacon (40 calories) or some scrambled Egg Beaters (45 calories worth).
Lunch and Dinner: To make life easy, I typically eat a turkey sandwich for both meals. I use two slices of low-cal wheat bread (40 calories each), 2 oz. of sliced turkey breast (about 50 calories), about a tsp. of spicy mustard on both slices of bread (10 calories total), then I load it down with another 30 to 50 calories of sliced tomatoes, cucumbers, and spring mix. I have substituted a lean protein (chicken, shrimp, fish, etc.) and a salad for the sandwich when I’ve gotten bored. You can really have whatever you want as long as you stay within the calorie limit. For example, Lean Cuisine has a great Steak Portabella dinner that’s not only low-calorie (160 calories), it’s also fairly low carb and has 15 grams of protein. I’ve eaten one of those, especially during cold weather when I want something hot.
I use MyFitnessPall.com to track all my food (skinny and regular days). And I lost 10 pounds in January even eating pretty badly on many of my regular days (pizza, Mexican food, etc.).
If I do get hungry or hit a low point on a skinny day, I just remember that the next day I can eat whatever I want. I figure I can do anything for a day. I think that’s one of the reasons people fail on regular diets — there’s no end to it.
While my version is not necessarily anti-inflammatory, or gluten-free, or Paleo or other structured diet — there’s no reason why it can’t be. One of the great things I’ve found about this is that it’s completely flexible because you can eat whatever you do or don’t want. You just eat less some of the time.
I hope this answers your questions. Like anything else to do with your health, it’s a good idea to talk to your doctor about your diet. Mine has seen the results and is delighted. My labs (cholesterol, glucose, etc.) look great, so my doctor has no problem with my staying on it.
I hope whatever your health goals are, that you’re successful and happy reaching them. Thanks for checking in.
I have news. All of it’s good in its own way.
I’ve been making progress on my New Year’s non-resolutions. Following the alternate-day fasting (ADF) eating plan, I’ve lost 10 pounds this month! I keep to 500 calories on Monday, Wednesday, and Friday, then eat normally the other four days. It’s actually been remarkably easy to stay on. I get my labs done next week so we’ll see if there has been positive impact on cholesterol, glucose, etc.
In other news, I am now scheduled for my second total shoulder replacement surgery on February 16. This is my fourth joint replacement (the others being hip, knee, and other shoulder). This shoulder has had two rotator cuff surgeries already. The doctor doesn’t believe that doing a scope surgery will provide enough improvement.
Of all the surgeries I’ve had, shoulder replacement was the hardest recovery. This is also my dominant hand, so I’m going to be struggling to do anything until I recover enough to use it.
So that’s all for now. Thanks for checking in.
I’d like to start this post by quoting the Orange County Register’s March 25 article (the full article can be found here): http://www.ocregister.com/articles/pain-709555-cdc-chronic.html
For the CDC to issue such blanket guidelines is injudicious and irresponsible. It also displays the capricious and unpredictable nature of the CDC as the guidelines are a significant shift from the CDC position of just a few years ago. Then, it expressed great concern that not enough was being done by doctors for the pain sufferer, especially those afflicted with chronic pain.
I would then direct you to Warm Sock’s recent post on the matter. She is one of the most thoughtful and realistic bloggers in the RA space that I know. Her careful review of the situation has led her to readjust her position on the matter. Her full post can be found here: https://warmsocks.wordpress.com/2016/03/25/pain-meds/, but the following really struck a chord with me:
The fact is that prohibition didn’t work, and I don’t believe the new guidelines will work, either.
Both of these excellent pieces come in the wake of this week’s FDA’s new labeling regulations for opioid pain relievers. As Forbes says, whether they’ll have much effect isn’t clear. (http://www.forbes.com/sites/ritarubin/2016/03/23/fda-orders-new-warnings-for-opioid-pain-drug-labels-whether-theyll-have-much-effect-isnt-clear/#264cfb175117).
As always, I encourage you to add your voice to the conversation.
So last week and this have been filled with doctors. As posted earlier, I have a good bill of health from my neurosurgeon who did my recent back surgery and also had a fairly rewarding conversation with my PCP’s PA about weight loss.
I had a regular follow-up with the orthopedic surgeon who did my hip and knee replacements. The good news is he says both replacements are looking great, which is really positive news considering the hip replacement is now seven years old. Most joint replacements need revisions or replacing after 10-12 years so I’m encouraged. The bad news is that he’s making noises that we might be replacing the right knee sooner rather than later. 😦
Today I had my regular rheumatologist’s appointment. With the surgery and trying to get caught up with stuff at work, I really haven’t had time to think about it. I’ve just been taking my Actemra once a week and going on about my business. I told her that taking the Actemra injection was like taking a 5 mg or 10 mg prednisone tablet. It helped for a day or two, but then wore off. She has suggested that we try to get the insurance to approve Actemra infusions where she can modify the dosage to see if we can’t get a better result. She also wants to be a bit more aggressive with pain management so she has prescribed some hydrocodone. At this point, it’s just one tablet at night to help me sleep. I’m really not much of a fan of hydrocodone but I keep having doctors insist on prescribing it for me. I should be grateful. There are a lot of people who really need it that, because of the new regulations, are having trouble obtaining it.
I got my lab results back prior to my rheumy appointment and they, for the most part, looked good. All my labs have always looked great. The one result that was out of line was one of my liver enzymes (again). But it was just slightly high and is probably because I’m still on Lyrica after the surgery to help with some diminishing but continued numbness in my right thigh.
The big news is that I formally gave my notice to my company effective mid-November. I am in the midst of a major project and I don’t want to leave them hanging, so I’m going to wrap that up before I leave. One of the benefits offered at the company is disability insurance (both short-term and long-term), so I have applied for benefits. If awarded, I will receive a large percentage of my current salary up until my full retirement age. I’m not sure what they’ll say about RA being a pre-existing condition, etc. but I guess we’ll see. So in the midst of everything else, I’ve been scrambling trying to get my doctors to fill out the (really stupid) forms and get them in so we can get a determination. I never really actually thought I’d be retiring early due to health reasons — I more kept the insurance so I’d have income during surgery recovery if I needed it. But the point is I’ve been paying the premiums all this time so there’s no reason not to apply for the benefits. All they can say is no and I already have that.
The good news is that I discussed this decision with all my doctors that I’ve seen recently and they fully support my decision to step out of the corporate world. That’s a bit sobering. It’s almost like I’m seeing myself through their eyes for the first time. Not one of them said anything like, “Are you sure you’re ready for that?” In fact one of them said they have been amazed that I’ve worked for as long as I have.
Of course this will play havoc with my insurance. I’ll be covered by company insurance in November. Then in December, I’ll still be covered, but I’ll be paying for it through COBRA. Then in January, I’ll still be on COBRA, but they’re switching insurance companies. Am I nervous making three major changes in my insurance coverage in three months? You bet.
In other news, Dallas is set for a major rain event. We had enough rain in May that a significant part of our area finally came out of the five-year drought we’ve been enduring. But it’s barely rained since. In fact, October, which is one of our wettest months, has not logged more than a trace of rain all month. With highs in the 80’s and 90’s, it might as well be early summer. But all this sunny weather has lulled me into a false sense of security. Rain and stormy weather on the other hand, send my joints into a tail spin. So with four days and 3″ to 6″ of rain in the forecast, I may be glad that I’ve got that new prescription for pain medication.
Overall none of this is really bad news and some of it is actually quite good. I think I’m just tired with dealing with it all. I’m tired of not feeling well. I can’t remember the last time I actually felt good. I’m tired of the stupid back brace and I’ve got two more months to go on my three-month sentence. I’m tired of doctors and needles and insurance claims. The thing that keeps me going at the moment that this time next month, much of this will behind me. I’ll be officially “retired”, the determination on the infused Actemra will be in, and the determination of the disability will be in. My biggest problem should be finding something new to whine about.
Thanks so much for “listening” to me whine and thanks for checking in.
I mentioned in my previous post that one of my primary goals in improving my health is getting back down to a healthy weight. I have a way to go. I also have high cholesterol, high blood pressure, high triglycerides and the occasional borderline high glucose. In addition, the extra weight is murder on my joints (as if RA wasn’t bad enough).
I sound like a weight-loss commercial when I say I’ve tried low-carb, no-carb, commercial programs, Weight Watchers (which really works), and just trying to watch what I eat.
I looked at bariatric surgery. I have friends and family who have successfully lost weight with lap-band, but I am so sick of surgery that I can’t hardly to stand to think of it. Plus there are long periods of follow-ups with these surgeries. Then I ran across the gastric balloon which is non-invasive (it’s a balloon they place in your stomach). It remains in place for six months, during which time the average weight loss is 20-30 lbs. It costs about $6K and is not covered by insurance. Then I thought, if someone would pay me $1K/month to lose five pounds a month for six months, could I do it? So I’ve decided to keep the money in my own bank account and just be very serious about losing the weight.
When I got a new PCP about 18 months ago, I also got a relationship with his PA, whom I adore. I would have to do several posts about why that is, but when considering such a major change in my life, it just felt right talking to her about it, and I was right.
She said there are four elements when it comes to weight loss:
- Diet. Diet is critical. Not only lowering your calorie intake but making sure you get enough calories so that your body doesn’t go into starvation mode. If that happens, your body start hording calories, which also causes stress which makes you put out stress hormones (such as cortisol) that act a lot like prednisone. The key is trying to get good nutrition within a reasonable calorie allowance. I had originally thought 1200 calories, but she had me move my calorie target up to 1300 to make sure I was getting the nutrition I need. To help, I track what I eat with My Fitness Pal (www.myfitnesspal.com). The basic plan is free and you can track online or on your computer. It has thousands of foods including packaged foods and restaurant items as well as letting you input your own recipes.
- Exercise. Okay. This is really, really hard for me but I am hoping that once I get healed enough from my surgery and I’m no longer working full-time that I can get back to the gym/pool. This is my goal. I will soon have no more excuses.
- Mental. This is critical. You have to be motivated (I am). Beyond that, you have to understand the mental and emotional triggers that cause weight gain. I eat when I’m stressed and my job causes a great deal of stress, so by retiring, I’m removing a huge contributor to my weight gain. Not everyone can quit their job, but it’s important that you learn coping methods for stress. As noted above, stress hormones act just like prednisone in many ways (and my waistline proves it).
- Medical. I take about 10 oral prescription medicines and a handful of supplements and vitamins. Add to that the OTC pain relievers, allergy meds, occasional rounds of prednisone, etc. and you can understand why taking even one more pill was more than I wanted to consider. But I knew I probably need some help to jump-start this plan while I wind down my work and help me get used to eating less. The PA recommended a drug called Saxenda. It’s marketed under another name to help diabetics get their A1C results in line. It was noted that diabetics were also losing weight right and left while on the drug, so FDA agreed to let it be marketed for weight loss under the Saxenda label. It’s a daily injection, but after years of taking injections for RA, that didn’t faze me. In fact, the needle is so small that I don’t even feel it going in. The down side is that it’s not covered by insurance and it’s very expensive. The PA gave me a starter sample that is good for a couple of weeks and I’m about to find out how expensive as I’m picking up the first prescription today. The PA said that she could prescribe it under the other label so insurance would cover it, but she’d have to give me an official diagnosis of pre-diabetes, which I really don’t want. She also said she’d be glad to provide samples if she has them (which she doesn’t always). I’m very impressed so far. I’m not hungry — at all. I’ve even lost my stress “munchies”. The problem I have is getting enough calories in since I really don’t want food.
So that’s where I am. I have a lot of work to do and I know it will take me several months to attain any significant weight loss and to get in better shape. But I have the motivation, a plan, and medical support (along with that of my husband), so I think I’m off to a good start.
If you have RA and are carrying around the extra weight, I urge you to start making changes, however small, to reverse that situation. Nothing will pay more dividends not only for RA, but your overall health.
Thanks for checking in.
I must have checked a box somewhere, sometime otherwise I wouldn’t have gotten the letter. You know those letters that start out “You previously contacted us and requested information …” This one is from Bristol-Myers Squibb (BMS) and even though I usually toss this kind of letter directly into File 13 (aka, the wastebasket), this one has piqued my curiosity.
BMS is introducing a data collection research projected called RALLY. It’s a long-term study evaluating the impact of RA on the quality of life and treatment experiences of people with RA and rheumatic conditions. There’s not much effort. About twice a year fill out a questionnaire that takes 30 to 60 minutes. Their recruitment goal is 20,000 participants.
On one hand, this is the kind of thing that I support because I believe that knowledge is power and the more we understand about RA, the closer we come to finding better treatments and, eventually, a cure. On the other hand, there is a certain qualm about providing so much information that goes into a database. (This comment from me — the woman who has given her fingerprints and retinal scans to the NSA to get through airport security and immigration more quickly …. ) I haven’t looked at the questionnaire yet but, among other things, the letter says they might contact my doctor to verify my diagnosis. I get it, they want valid information.
If you would like to learn more and/or participate there are two websites. For frequently asked questions, go to http://www.arthritis-research.org/participate/frequently-asked-questions. If you want to participate, you can either call 1-800-323-5871 or visit the RALLY website at www.ndbrally.org and click on “NDB & RAlly Participant’s Entry.”
In other news, I’m proud (and somewhat humbled — again) to have been notified that Carla’s Corner has been named one of Healthline’s best Rheumatoid Arthritis blogs. Many of my favorite bloggers have also made the list. Check them out at http://www.healthline.com/health-slideshow/best-rheumatoid-arthritis-blogs. If you aren’t already familiar with the terrific people who write these blogs and share their stories, I think you’ll find it well worth your time and effort. There are some extraordinarily inspiring and educational posts out there.
This week is filled with doctor’s visits. I should have lots to report by the end of the week (hopefully all good!). Thanks for checking in.
I can’t remember a time when my joints didn’t pop. Even as a kid I’d sit watching TV and flop my hand back and forth just to hear the snapping sounds, like a kid popping chewing gum. Must have been terribly irritating.
As an adult, I was at an appointment with my orthopedic surgeon and when I slid off the exam table, both my ankles popped loudly. I didn’t pay any attention but it startled my doctor who immediately started examining them and asking if they hurt. I explained that was the norm, not the exception for my ankles.
The list goes on and on, from the TMJ issues that make every meal a rhythm section down to my ankles. I can make my fingers sound like castanets. I used to pop my knees and hips out of joints just to get a good stretch. The only joints that I think are immune are my elbows.
But the interesting thing is, when my joints are swollen, my joints don’t pop. (Which makes sense when you think about it.) Even when the swelling is slight enough not to be very visually noticeable, I can tell something is going on because my usually vocal joints go quiet.
I doubt this makes any scientific journals or gets used as an RA measure like DAS28. However, it’s important to understand our bodies and the ways it tells us what’s going on. As an example, a mother of child who had badly injured his hand noticed that the affected fingers didn’t wrinkle in water. As the child healed, the wrinkling effect returned to his hand. Water-wrinkled skin is now often used as an indicator of nerve activity in various parts of the body.
So when I get up in the morning and things go snap, crackle, and/or pop, it’s not a bad thing.
Here’s hoping that whatever pops up in your life today is a good thing. Thanks for checking in.