Off for a bit for shoulder replacement surgery

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I’m having my right shoulder replaced in a couple of days and it’s amazing what needs to be done beforehand! Part of the problem is that my right arm will be in a sling for a while and I can barely scratch my nose with my left hand. So in addition to rearranging all kinds of schedules I have to do a bunch of home stuff while I can still use my right hand.

This is my fourth joint replacement (and my second shoulder replacement) since my RA diagnosis not quite 10 years ago. I keep telling my husband that I’m getting younger instead of older since I have all these new parts.

I also tell him that when I die that instead of burying me, he should just turn me into a hardware store and make a bit of money.

At any rate, I go in for surgery 2/15 and will be in the hospital for at least a couple of days. I’ll try to update as soon as I can, but typing is going to be a challenge for a while.

Looking forward to being back online! Thanks for checking in.

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Seeking Sleep

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I used to be a world-class sleeper. Thanks to RA I not only DON’T hold that title, there are a lot of nights I barely sleep. If you share this issue, you might want to read more of my story and efforts to find sleep on RheumatoidArthritis.net: https://rheumatoidarthritis.net/blog/seeking-sleep/.

 

More About ADF

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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.

Good and Other News

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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.

Photos (Finally)

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Thanks to our brilliant family photographer (my husband) pics from our recent transatlantic voyage are now posted here: https://jwktexas.smugmug.com/. We left out of Southampton, UK and journeyed on to Lerwick in the Shetland Islands, Scotland; then to Reykjavik, Iceland; St. John, Newfoundland, Canada; Portland, Maine; finally ending our voyage in New York City. There are lots of pics from other adventures as well, so enjoy!

Can the New CVS RA Program Harm Patients?

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Today CVS Health issued a news release announcing their Transform Rheumatoid Arthritis Care™ program. At least they were honest. In the first sentence, it clearly states that the purpose of this program is to “help the company’s pharmacy benefit management (PBM) clients better manage care and costs for rheumatoid arthritis (RA).” At least they didn’t lie and say it was for the benefit of patients.

For those of you who don’t know what a PBM is, they are the organizations that insurance companies use to determine such things as what drugs are covered and for how much and whether step therapy is required before approval. They exert an amazing amount of control over what drugs are available to patients and what those drugs cost. In a previous post, I debunked one of the major PBM’s assertions where they misstated the American College of Rheumatology treatment guidelines for their own purposes.

It’s a known fact that RA drugs – particularly biologics – are some of the most expensive medications prescribed. I acknowledge that we need to manage these costs as much as possible – but I disagree that it should be at the expense of patient care or interfere with the doctor’s right to design the best treatment plan possible. Even the National Institute of Health (NIH) has stated, “The treatment of RA has been transformed in the last decade with the introduction of several targeted biologic agents. Although biologic agents are more costly in the short term than conventional disease-modifying antirheumatic drugs, drug-specific costs may be offset by significant improvements in RA symptoms, slowed disease progression, and improved physical function and quality of life for patients.”

What are some of the key points CVS Health’s new program that I think may be directly or indirectly harmful to patients?

  • It encourages the “use of lower-cost therapies”. Translated into patient language, that means that patients may not have immediate access to biologic medications until first “failing” on older, less costly treatments such as triple therapy (sulfasalazine [a sulfa drug], hydroxychloroquine (Plaquenil), and methotrexate).
  • Under outcomes-based contracts, pharmaceutical companies might be penalized if patient targets or goals are not reached. Most patients are prescribed an anti-TNF drug as their first biologic. It’s a well-documented fact that approximately 30% of patients fail on their first TNF biologic within the first year. How will penalizing the manufacturer (1) help the patient or (2) lower drug costs (the program’s goal)?
  • Changing to an indication-based formulary. This means that instead of a certain class of drugs being covered for a condition, medications are placed on the formulary (payment scale) based on the specific drug. For example, all anti-TNF drugs (the most commonly prescribed RA biologics) might not be covered. According to CVS’s Carefirst statement the following, commonly prescribed RA drugs have been removed from the formulary for rheumatoid arthritis: Actemra, Cimzia, Kineret, Orencia (infused), Simponi, and Xeljanz/XR. This can severely limit the affordable treatment choices for patients.
  • According to the news release, a PBM could save up to 5 percent on RA drugs. That translates to $500,000 over 100,000 patients – or about $5 a patient. First of all, I will gladly pay the $5 to be given access to the drugs that my doctor thinks is the best treatment plan. And second – back to the patient – while this might save the PBM money, there is no indication that these health care savings will be passed to the patient.

For me, there are two inescapable conclusions. The first is that these types of pharmacy programs border on practicing medicine by dictating what treatments are available on an affordable basis to the patient. The second is that all the focus is on saving money while apparently no thought is given to the debilitating effects on patients who are denied effective treatments.

Is Working with Pharma a Problem?

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One of the things I have enjoyed most the last few years as I’ve focused on my health is the opportunity to work with pharmaceutical companies. I’ve met some amazing, talented people who see the future of RA treatment from a very different perspective than I do. This has given me both insight and hope for both present and future people with not only this disease but related autoinflammatory and autoimmune conditions.

The downside of this is I’ve also been accused of “selling out” to big pharma and “being used.” Some of this is simply bias against the pharmaceutical industry but part of it is because patients who participate in these activities are often paid. It’s usually not much — I could make a lot more in the same amount of time in my mainstream consulting business. I do it because I sincerely believe that the patient voice needs to be heard and I’m thrilled that industry is listening.

I just ran across the following article by a cardiologist who has also worked with pharmaceutical companies and shares some of these same concerns. Obviously he works on a much different level than I, as a patient, do. However, his comments and perspective are both well-considered and relevant. I invite you to read it:

https://www.medpagetoday.com/blogs/revolutionandrevelation/70407

Thanks for checking in.

Systems Maintenance

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I’ve been searching my archived posts for some information and, in doing so, ran across the article below. I hope you don’t mind my sharing it again. It struck a chord with me as we start the new year with new resolutions and hopeful expectations.

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My husband is an architect.  In the context of this blog, that’s fairly meaningless information except that all of our significant others (spouses, partners, kids, parents, close friends) impact our lives in ways both subtle and dramatic. For example, while most people have travel journals filled with pictures of sunsets and scenic vistas, mine are filled with various close-ups of architectural details like cornices and columns and downspouts (oh my!).

One of the other effects being married to architect is watching an inordinate amount of Discovery and History channel programs on architectural and engineering marvels.

One recent such program I [really wasn’t] watching was being moderated by the lead engineer in charge of maintaining one of our famous structures. I honestly don’t remember whether it was the Golden Gate Bridge or the Empire State Building. However it was a significant structure and one that even those people who can’t find South Dakota on the map have no doubt heard and could possibly guess its location.

The moderator made a very striking comment – one that has stuck with me while the rest of the program quickly faded from my memory. He said that structures are like the human body. The human body doesn’t fail all at once. First one system — eyesight, muscular-skeletal, pulmonary, circulatory, whatever — starts to fail, then other systems follow. Structures — specifically buildings — are the same way. Given the lack of outside influences (like earthquakes), a building doesn’t just become decrepit — first a system — like plumbing or electrical or HVAC — will fail and need to be fixed, then something else will have problems, and on and on. (Those of you who are homeowners are sitting there nodding your heads, aren’t you?) Further, when one system has problems, either the faulty system itself or the repair of the system can cause issues elsewhere. For example, leaky plumbing can cause foundation issues. Fixing the foundation can damage the exterior of the building (not to mention one’s budget).

I’d never considered this before. I’d always just assumed that as I aged, my entire body aged at the same rate or started to malfunction at the same time — my skin would wrinkle, my hair would turn grey, I’d lose some of my eyesight and hearing, and eventually some of my mental and physical abilities.

But much like the building with the haywire plumbing, those of us with RA have one system (our immune system) that is not only haywire itself, but it is causing havoc for the rest of our bits and parts — like our joints. And besides that, efforts to stem the damage by using powerful drugs, has its own set of destructive mechanisms on otherwise innocent bystander bodily functions and parts.

And while we have our own maintenance engineers (doctors, pharmacists, physical therapists, to name a few), we have one great advantage that buildings and bridges don’t have. Humans are self-healing. We have the ability to make lifestyle changes — diet, exercise, rest, mental health — that counteract or impede the ravages of both time and disease.

In an earlier blog, Do What You Can, I pointed out the success I felt at finally going to a water aerobics class and how doing anything is better than doing nothing. So this weekend, do a little self healing. Walk an extra few steps, eat a little healthier, get some good rest, hug someone you love, and find a reason to laugh.

Thanks for checking in.

Be It Resolved …

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I’m not much for New Year’s resolution, but the start of a new calendar (following the excesses of the old one) is a good time to reflect on ways to make your life better. Here are some of my thoughts as we begin 2018:

  • Balance. Since I left full-time employment about two years ago, I’ve been almost exclusively focused on RA advocacy. This has been incredibly rewarding in ways that I couldn’t begin to imagine. But I’ve come to the conclusion that my disease is now dominating my life. I spend hours each day researching, writing, emailing, and on social media. While I intend to maintain the wonderful relationships and existing activities, I have declined some new opportunities and adjusted some other commitments to make more room in my life for other things.
  • For better, not for worse. We all have situations or people that cause us varying degrees of stress or grief. This might be an annoying friend or co-worker, a job where we cry on our way to work, or even an abusive life partner. We often “go along to get along” because there are benefits in these situations or perhaps we just don’t want to go through the drama (or trauma) of change. Many years ago, I adopted a strategy I use when I start to think that “enough is enough.” My bottom line assessment is whether my life is better with or without that person/situation. And while this assessment has led me to move, change jobs, and even to divorce an abusive spouse, it has also given me the commitment to work through issues to improve a situation or relationship to where it is rewarding (or at least acceptable). It seems like the last couple of years I’ve fallen into the habit of saying “yes” to temporary things that have morphed into longer-term obligations that do not provide a positive return for me. I have realized that these things are actually robbing me of the time and energy I could use to do things that bring me joy, enrich my life, and feed my soul. As these situations raise their head this year, I am committed to being honest about my feelings and whether they should continue to be part of my life going forward.
  • Sustainability. In 2016 I lost 25 pounds. In 2017, I kept them off. It’s time to take the next step toward losing more weight. But I know that I have to do it in a manner that works for me. I started walking in 2017, and that works for me. Basically all I have to do is lace up my shoes and head out the door. While something like water aerobics might be better for my joints, if I have to get dressed, drive to a pool, then take the time to dry off, get dressed and drive home, I won’t keep the commitment. I need an exercise program that is sustainable. Similarly, I’m looking at a temporary diet modification to jump start my weight loss. I have a neighbor who has had amazing results with the GBOMBS plan, losing 28 pounds and relieving his gout symptoms. The Galloping Grandma reports incredible results following Clint Paddington’s eating plan. I know that I would last about one week following either of these highly regimented diets. I’m not saying they won’t work — but they will only work if you adhere to them and I know that I won’t. Rather, for the month of January, I am adopting the Alternate Day Fasting (ADF) where you restrict calories (to 500) one day, then eat normally the next. The 500 calorie days take a bit of planning, but it is actually quite a bit of food if you stick to lean proteins and vegetables. I’m modifying it slightly, doing the fast days on M-W-F which give me two days during the week and the whole weekend to eat reasonably. This schedule also is a bit easier on my husband who has to endure my diet attempts. If this works, and I can do it, I might adopt it for a longer period.
  • Kindness. I continue to be amazed at how cruel we can be to each other, especially online. In other cases, we tend to be very self-absorbed (in ourselves, in our phones, in our own desires) that we forget about the other people around us. It’s always easier to criticize (How could you be so stupid?) than say a kind word (That must have been tough for you.) I am continuing my quest to be kind, not only to myself, but to others. I implore you to do the same and, if you can’t actually be kind, at least try being polite. The dividends for you and for those whose lives you touch are amazing.

So happy 2018 to you and yours. May the year be filled with blessings for all of us. I hope whatever you resolve that it brings you health and happiness. Thanks for checking in.