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!
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.
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.
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.
Virginia Hammerle is a local legal expert, lawyer, and columnist for the Dallas Morning News. In today’s column (also on her firm’s blog) she talks about the Texas Lawyer’s Creed that was created to set standards for courtroom behavior. Originally drafted a generation ago to help curtail the “Rambo-like tactics” of certain lawyers, the two highest Texas courts subsequently issued it as a court order, making it binding on all Texas lawyers. This order was reaffirmed in 2013. Who says rambunctious lawyers can’t mind their manners?
Ms. Hammerle has modified it into a Family Creed that, if adopted, could help civility reign at a time that should be joyous but all too often turns into hurtful drama. I encourage you to read the article at the link above.
I am lucky to not only have a family but to also have an extended family of local friends and to be part of a greater social community that includes many advocates that I respect. Unfortunately, in the impersonal world of social media, it’s easy to be aggressive. I have been witness to behavior online that I would have never suspected came from the person I enjoy face-to-face.
For my gift for the holidays, I would like all of us to adopt Ms. Hammerle’s family creed (both in person and online). I won’t reproduce it here, but two of the things that strike me from the creed are:
- I can disagree without being disagreeable.
- I will treat everyone with courtesy and civility.
I have learned through experience (as most hard lessons are learned) that you can only get back the respect that you give. Let us give each other this gift not only for the holidays but going forward.
However you celebrate the holidays (or like me, don’t celebrate) , may you and yours be blessed with health and happiness.
Traveling? You should be aware that drug laws vary dramatically not only from country to country but between states. The consequences can be severe. Read more on my article for RheumatoidArthritis.net here: https://rheumatoidarthritis.net/living/beware-of-different-drug-laws/?utm_source=notifications.
Did you know that HOW your treatment is administered can affect you financially? That’s because some treatments are covered by the prescription/drug portion of your insurance coverage (or Medicare) and some are covered by the medical/major medical portion. That’s an important consideration in choosing both a treatment plan and (as we’re in the open enrollment period) health coverage.
There seems to be quite a discussion in our community about the misunderstanding that the term rheumatoid “arthritis” causes and a case to be made for calling it “rheumatoid disease.” I don’t necessarily disagree, but I do see some major problems with it. I discuss a major one here: https://rheumatoidarthritis.net/living/the-roadblock-in-naming-it-rheumatoid-disease/
While I’m offline for a while, thought I’d refresh some of favorite posts. This one is from a few years back, but I believe it’s just as valid today. Hope you enjoy it.
The Dallas-Fort Worth Metroplex where I live has an intricate system of highways, streets, and side roads that somehow manages to move millions of us from one place to another. These transportation arteries are connected through an amazing array of engineering marvels constructed of connectors, cloverleafs, and fly overs.
I was recently driving from downtown to my home in North Dallas and needed to take the Dallas North Tollway (DNT). This particular intersection is a single-lane raised ramp that connects one of the main downtown surface streets to the higher level of the DNT. Since it’s a single lane, it is often backed up. It’s also narrow, curved, and rises off the ground about 20 feet. (What’s not to love?)
It seemed particularly backed up on this occasion and I noted that while there were no cars actually on the ramp, there was a single car that was apparently stalled right at the entrance of the ramp. There was no way to get around the car on to the ramp and traffic was quickly backing up.
Sure enough, the emergency flashers came on the car, but it [thankfully] began to ease up the ramp at about 10-15 mph. It came to a complete stop at the crest of the ramp, then continued inching carefully forward.
When we reached the DNT, and were once again on solid ground with four straight lanes of traffic, the flashers went off and the car drove away at highway speed.
It was not a problem with the car, it was a problem with the driver. The driver was apparently terrified of driving on the overpass, and thus slowed down.
The fact of the matter is, you can get anywhere in DFW on side streets, without getting on a highway. It’s not as fast or possibly convenient, but its possible. While there are trade offs, if you’re afraid of driving on overpasses, perhaps side streets are a better option.
Having RA is similar. Just like there is an intricate network of transportation arteries in DFW, there is a wide range of treatment options for our disease. Some of them are really scary. They have side effects that none of us would want. But none of us want the effects of uncontrolled RA, either.
My one irrational fear is the fear of falling. Not of heights — of falling. I’ll leap at the chance to fly in a helicopter, but I simply will not climb a ladder to change a light bulb. I don’t think I’ll fall out of the helicopter, but I’m convinced that I’ll fall of the ladder.
So I contemplate RA and wonder if one of the emotions I feel is fear. Perhaps. Probably. But what of?
Looking closer, I realize that it’s that deep, dark, secret fear that each of carries within. [No, not public speaking or that underwear thing.] It’s the fear of the unknown.
I’m a micro-managing, type-A, control freak and not knowing what this disease holds for my future is scary. Will I be able to continue to work? walk? drive?
What I’ve come to understand is that like all other things in life, as the future becomes the present and things are revealed, I can deal with it. And like other things in life — relationships, career — it truly is a one day at a time situation. And I can do that. I can make decisions based on what I know today, how I feel today, that will hopefully make my tomorrows the best they can be.
Thanks for checking in.