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This week marks three years since my RA diagnosis, and I’ve been tossing around some thoughts lately. 2012 has been a rough year in so many ways, and as time progresses and the stressors don’t change, I can see how much that stress affects me. I also have had a couple of people ask me lately to share what keeps me going … strategies that help me stay feeling well.
Challenges: My main challenges are pacing myself and managing stress. I am a busy, doing, going and never stopping kind of person. This can be a little too much for my body sometimes. And my main stress relievers are exercise and my work (more on that later) … not exactly still activities. So I have to force myself to slow down and relax a LOT.
Strategies: I switched last year to a more gentle form of exercise – water exercise. I love it and find it to be the perfect pace. Plus I can ramp up or down depending on how I feel – and no one in the pool is judging me because it’a all underwater! (same goes for swimsuit-related self-consciousness …)
Strategies: I have a much lower stress career now than I did 10 years ago. That’s massage therapy versus advertising. Although I believe in good customer service and meeting my clients’ needs, I also have a wonderful group of clients who encourage me to take care of myself first so I can take care of them more effectively. I don’t have a boss telling me I must perform. I judge my schedule based on how I feel at the time. Even though I book people ahead (sometimes several weeks out are full), I can skip filling in the spot when someone cancels and give myself a break when needed. Little things like that make a big difference for me. I also work in a beautiful space that I completely designed. I play peaceful music that I love. I talk with chatty clients, or I have long breaks of silence where I can focus on breathing and the meditative nature of giving a massage.
Challenge: After a 10-year massage therapy career, I think I’ll probably taper off over the next 5-7 years. I’m nearly 50 now and ready to shift into another career – health coaching! I am passionate about this field, and especially about helping people who have chronic pain and inflammation like me.
Strategies: Still working on how to do this … but I just know that if I plan that will help. I have a few expert friends that I’ll reach out to for ideas. This is a big part of my strategies – don’t try to “go it alone!” Asking for help always offers better solutions.
Challenge: Managing medications
Strategies: Get a smart-phone enabled medication reminder app. It’s my savior and reminds me to take my meds twice a day. Plus once a week. Plus every other week. Ayyyiiiyii … I have enough in my brain without stressing about compliance. And consistent medication is a big help to my overall wellness. The meds reminder also helps me remember any non-standard meds I have taken, like antibiotics for example.
Challenge: I’d love to say that I can eat anything I want and never be affected … in my waistline or otherwise. But that would be a big, fat LIE. I have had to revise my perception of “comfort food.” If I eat a bundle of junk food, sugar or even too many carbs … my body gets angry. If I gain weight, my clothes hurt (literally … tight waistlines are yucky!) and more significantly my knees ache. My hands will also swell with too much “discomfort food.”
Strategies: Well, as a health coach, I know a lot of great information. I even know how to take baby steps and put it into action. And starting about 20 years ago, I began this journey toward making better health choices. 20 years?? That’s long journey … why so long?? Well, because I believe the journey never ends. There are always changes in our bodies and in nutritional theories. For example, three years ago I would never have truly considered going gluten free. Now I’m considering it pretty seriously. I work every day to eat clean – whole foods that are primarily home cooked with love. I read food labels and know what ingredients make my body hurt. I know how much I can “goof off” before I get the diet smack down. My morning starts with a nutrient dense smoothie, and my afternoon snack is often a fantastic green drink I found recently. I avoid “discomfort foods” but I also don’t allow stress about those foods to overwhelm me … that would produce the same result as eating a bite or two of the food.
Challenge: SLEEP! Some nights I have perimenopausal symptoms (extra uncomfortable heat), and others my husband snores louder than usual. Often I get achy in the middle of the night and can’t find a comfy position.
Strategies: Keeping a standard sleep schedule all seven days of the week helps me a lot. Same time to sleep and same waking time means my body isn’t surprised every night – less change equals less stress. I also found a cool thing a few weeks ago called a Spoonk. It’s an acupressure mat that I lie on for 10-15 minutes before sleeping every night. It seems to calm my nervous system down and deepen my sleep. I also think that better sleep is helping my digestion – an unexpected bonus!
Well, now these aren’t secrets anymore … you know them too! Hope they help you make your RA easier to manage.
Sometimes I tell someone I have RA and it doesn’t even register on their face. Like I just told them I have a cold or silver/gray hair. Colds go away in 10 days (if we’re not immune suppressed), but RA is forever.
It’s just frustrating … so I thought I’d share with you. Even though you didn’t ask.
I wish I could tell the person that the easiest response is, “So what does that mean for you?” They don’t have to know anything about RA to ask me that. And I can choose how much I tell them … which depends on mood and the “need to know” factors.
Phew. Got that of my chest. Thanks for listening.
As a holistic health coach, I am blessed to be part of a large and vibrant community of progressive-thinking folks. I have learned a tremendous amount about nutrition and ultimately about wellness from my training and experience. In fact, it’s this kind of naturally-based healing/health that I have focused on my whole life.
Many years ago I was a leader for Weight Watchers … my first experience with “diet” and nutrition programs. I’ve done yoga for years, and spent a lot of time at gyms working out before that. I’ve had acupuncture. I’ve trained in Reiki and receive it regularly. I’ve received other types of energy healing regularly for years. I’m a massage therapist who depends mightily on a weekly massage (and have for 6+ years). I love having green smoothies and shopping at my local farmers’ markets. I believe in the power of prayer. And for the most part, I’ve always tried a lot of natural healing methods before turning to medical care.
And despite all this stuff … the RA symptoms started. Reiki and massage didn’t help (although they certainly didn’t make anything worse). I tried to keep eating healthy, but my ability to exercise became severely limited. I had to cut my work schedule back by 20% to keep the incredible pain in my hands at bay. Symptoms didn’t get better when I wasn’t working either. Weight gain ensued … and it was all depressing. I hung in there with the natural healing methods as best I could, but I knew it wasn’t going to be enough. I’d reached a fork in the road.
It was time to pursue medical diagnosis and treatment. You’ve read about that process here on the blog, so I won’t repeat it. But let me summarize the results: I feel a thousand percent better! Practically my old self. I continue to pursue all my natural health and wellness methods, which support the medical process that keeps me going.
What I discovered is that it isn’t a fork in the road, but a new path. I don’t have to give up the things that have always helped me. I don’t have to feel guilty about getting the medical treatment I need to be well. In fact, my rheumatologist has been pretty darn impressed with my incredibly low inflammation levels. The other RA indicators are still positive, but my liver is processing the meds in the healthy way and my overall symptoms feel mostly under control.
So for those who might judge because I’ve chosen to integrate these (sometimes opposing) paths … take a walk in my shoes before you tell me I’ve done myself wrong. And remember, I wear mostly “sensible” shoes now … not the beautiful higher heels of my youth. So it may not be as easy or much fun to be in my shoes … but I’m happy here. Isn’t that what life is all about?
**This blog post is part of a larger Blog Carnival organized by Rheumatoid Arthritis Warrior, Kelly Young. Please visit the other posts as well … this carnival’s topic is “Resistance to Rheumatology Treatment”**
When I turned 40 my aunt told me that my body would never be the same again. That it would change unexpectedly and often. That everything I thought I had figured out would become wrong. That these adjustments would keep happening every year or so for the rest of my life. None of that information was easy to absorb or adjust to! And that was before the RA symptoms started!
Here’s an example of my “new body.” This morning my pain alarm woke me up. Truthfully, it woke me twice (at least) last night and then once after it was light outside. I’d just like to know who installed this alarm. How do I control it and could I even disable it? It’s bad enough to use an alarm clock to wake up every day, but having one inside my body stinks!
Another example is that lately my relationship to food has changed. I love delicious food. But I’ve been wondering why I find most food a lot less interesting. Maybe it comes from meds or maybe just from dealing with so many annoying issues related to RA all day. Sometimes I just don’t have the energy left to get excited about meals. Except possibly ice cream … LOL.
I have always been a bit ADD, hyper and not very good at sitting still. Now I treasure those days when I can fit a nap in during the day. I know that I have to take a break to sit down or lie down during many of my former “normal” tasks. I am grateful that I can still accomplish a lot, since I know a lot of RA patients aren’t able to do their everyday stuff. But it all just takes so much longer now.
Does anyone know where my body went … because I’d really like to trade this one for the other one. Okay? Thanks. Bye.
This weekend I’ll be traveling to another state to visit with my mom. While I’m looking forward to seeing her & spending time together, it brings up three significant stress points as well.
1. The travel process itself
2. Her RA situation
3. My RA – especially relevant to the tasks she needs my help with
I’ll be traveling alone as I typically do for visits to see Mom. Keeping luggage light and easy to manage should help. Even so, I always check my bag so I have less to wrangle during layovers and airport navigation. And it turns out my first day of travel will be a 11-12 hour process. It’s mostly a very long layover, but airports just aren’t very comfortable after a couple of hours. Honestly, just the length of the day is daunting. Thankfully the trip home is more direct and shorter in duration – because by then I am sure to be tired!
I am quite comfortable in my own yummy memory-foam bed. Yet this trip will include two separate guest room beds of undetermined comfort/discomfort. Hoping there will be lots of pillows available so I can prop myself into a comfy position on my back. Side sleeping is still problematic due to shoulder flare issues. But hey, at least I don’t have to factor sharing the bed with hubby into the equation! ;->
My mom has RA that has gone virtually untreated medically due to her religious beliefs. She’s had some type of RA-related symptoms for nearly 10 years, but likely has had the disease for much longer. Her hips, feet and knees are so damaged that she’s now wheelchair bound. Other joints are so damaged that at 69 she’s dependent on nursing care for most of her daily functions.
I can’t begin to describe how difficult it is to see Mom like this. I just don’t know what the next RA-related issues will be for her, but they are bound to be uncomfortable and scary. And that’s probably a massive understatement.
I have chosen not to tell her about my RA diagnosis. I’m not sure how much longer I will keep her in the dark, but for now the choice makes sense to me. I am doing well with my various medications, and perhaps she won’t notice for a long time.
On the other hand, the list of tasks grows longer and longer as we approach the visit. I don’t really slow down or stop and rest enough. And on my last visit the pain levels skyrocketed and I hardly slept at the end of the trip. Since then I have learned to take better care of myself, so I just need to stay strong enough to make sure I slow down to rest during the day. I am still struggling with this at home … so who knows how it will go when I’m with Mom.
Maybe I’m just a big whiner … because in the big scheme of things I’m still doing a lot and mostly pain-free. But every day I still only get so many spoons, and traveling sure changes how they get used. Thanks for listening!