Archive for June, 2012
I was getting tips on how to prevent pain and stress in the wrists when doing yoga with RA, and my instructor said something so kind, so perfect, so wise, and so simple, I had to share.
“I respect your journey,” she said. “I know you may not see it that way now. You may see it as a pain in the ass and that is fine, but you are on a journey and I respect your path, strength and courage.”
Wow. Powerful words. In about ten seconds she had the reaction to the news of my RA that I realized I was seeking. Acknowledgment that it is a difficult card to have been dealt and it’s not my fault to have it. Permission to react any way I want. Support. Confidence that the circumstances I’m in now will ever evolve. And finally, encouragement of my power to deal with this.
The last couple days were rough. Once again, my feet were hurting and I was consumed by thoughts of “oh my God, the drugs aren’t working” and “it’s because I’m down to only four methotrexate per week (and Enbrel).” Or, maybe it was just the normal ebbs and flows of life with RA. But of course my mind doesn’t like that thought either. That thought means it might be like this forever.
So with my feet hurting, two days ago I thought wisely that I should not wear flipflops, which let my feet swell, but aren’t supportive for the painful pad of the foot. Of course heels were out of the question and tennis shoes would just throw my outfit too far off (I’ll sacrifice a little bit of style, but I just can’t go that far). I opted instead for my expensive, less-than-flattering, mary-jane-style shoes with nearly-orthopedic inserts, lots of support, and an adjustable velcro strap to counter swelling.
My feet walked me to work relatively happy. By lunchtime, they were so swollen, no amount of loosening that little velcro strap was going to help. I spent the next few hours barefoot (probably didn’t thrill my coworkers). I forced my feet into the shoes and found myself a ride home – no way was I gonna walk if I could help it.
I ended my night with my aching, painful, and now blistered feet in a cold foot bath. It helped a little.
Cue the next day. Guess what, I woke up with hurting feet. They were back to that point where rising up on my toes, even a little, is pretty excruciating. Flipflops were out, my expensive RAD shoes were out, tennis shoes were…out (sorry! I’m just not ready to bring tennis shoes into my work outfits yet!). I felt pretty good about another option: boots with no heel and inserts that would give my feet padding and allow them to swell. Yes, the weather was unseasonably hot for June, but I could sport boots with a dress and make the look work. The great style/pain compromise settled, I happily set out on my short walk to work.
Immediate pain, which of course pained me in another way: it was a painful reminder of how badly my feet hurt in these shoes in my pre-diagnosis days. Only a few hours later, I could feel my feet swell to the edges of the boots. That was another rest my feet kinda night.
And then there’s today. I wake up expecting pain, but I feel fine. Overjoyed, I lace up my tennies (to workout, not to go to work!) and go for a run. It’s a little shaky, but I’m feeling so much better, it’s powerful. My feet are feeling good, so I opt for my greek sandals with plenty of padding on the sole. Mostly pain free all day.
Don’t get me wrong, I’m not complaining since today is a great day for my feet, but the pain rollercoaster of RA is physically and mentally exhausting. There’s just no predicting when a flare will hit or how bad it will be. And there’s no science to why it gets better, at least no science that I’ve figured out.
As my rheumy says, you’ll drive yourself crazy wondering what causes what. I guess it’s best to just take care of myself as well as I can – plenty of sleep, minimize stress, keep at my high fruit, veggie and omega-3, no dairy and gluten diet, and appreciate the good days. At least, that’s what I’m doing today.
I experimented in gluten-free, dairy-free cupcakes the other night to surprise my coworker for her birthday. The results were not what I expected (they’re definitely not the red velvet cupcakes the name promises), but were pretty good in their own way. And they were a hit at the office. 🙂
I did this recipe for the cupcakes, but subbed brown sugar for the coconut sugar:
Then I did this for the frosting, which was good, but definitely not as sweet as traditional frosting and a little difficult to spread – it came out a little crumbly.
Let me know what you think, or if you have your own recipes for gluten-free, dairy-free desserts, I’d love to hear them!
Found some great smoothie recipes at NYTimes.com that I had to share. Just add probiotics, fish oil and some brown rice protein, and I’m set!
- 6 almonds
- 1 tablespoon sunflower seeds, soaked overnight and drained
- 1 tablespoon pumpkin seeds, soaked overnight and drained
- 1 teaspoon toasted flaxseeds or sesame seeds, soaked overnight and drained
- 1 ripe banana, frozen if possible
- 1 cup low-fat cow’s milk, rice milk or almond milk
- 1/4 teaspoon vanilla extract
- 1 teaspoon honey
- 1/8 teaspoon turmeric
- 2 ice cubes
- 2 teaspoons almond butter or peanut butter (optional)
- 1/2 cup freshly squeezed orange juice
- 1 cup mixed frozen berries or blueberries
- 2 tablespoons granola
- 1/3 cup diced beet, either raw or roasted (50 grams)
- 1/4 cup plain low-fat yogurt or low-fat coconut milk
- 1 teaspoon honey or agave syrup
- 2 or 3 ice cubes
- Sliced orange for garnish (optional)
- 1/2 cup freshly squeezed orange juice
- 1 cup mixed frozen berries, preferably with some cherries included in the mix
- 1/2 cup chopped red cabbage (50 grams)
- 1 teaspoon honey
- 1/8 teaspoon cinnamon
- 2 or 3 drops almond extract (about 1/8 teaspoon)
- 6 almonds or 2 teaspoons raw almond butter
- 3 ice cubes
First of all, I want to say that I love my rheumy. He is always optimistic about my improvements and the possibilities of getting better. As he assured me during our last visit, “You’re probably 80 percent improved since the first time I saw you, but I promise you will get much better from where you are today.”
Hearing him say how far I’ve come is a great reminder to appreciate your victories instead of focusing on what still isn’t perfect. So I had a small celebration for the realization that it’s been more than a month since I’ve had severe morning stiffness – woohoo!
I’ve made progress, but I have a ways to go. It sucks that I was in the middle of a mild flare when I saw him (still am), which is effecting my feet, wrists, energy and digestive system (or is that the meds, ugh). It made it all the more frightening when he said I have to go down to four methotrexate pills per week from six because the results of my liver function panel weren’t good. I just hope that going down on the meds don’t make my symptoms worse.
I asked him if my current flare might be related to the 10K I ran over Memorial Day weekend, to which he replied, “You can drive yourself crazy trying to figure out what causes what with this disease.” True, and I know that I’m guilty of this.
I explained that pre-diagnosis I was planning on training for a marathon in 2013, so I was worried that running wasn’t good for my body. He encouraged me not to give up that goal, which I love him for. So I guess despite the pain (it usually hurts after, not during running) and fears of making it worse, I’ll keep the goal and see how my training goes.
I also asked him about a weird blood burning sensation I’d had in my arms, especially near my elbows. That one stumped him a bit, but he said it wasn’t a concern unless it was happening frequently. If the symptoms are frequent, one concern is that the Enbrel is causing some sort of neurological side effect (great…). I haven’t had it since then, so I guess I’ll follow the “don’t worry” advice.
One more thing of note, I must of hit a blood vessel or vein giving myself my Enbrel shot last night because it bled, a lot. Eww. Aside from being gross (I’m a total wimp when it comes to these things), it’s fine. It barely even bruised compared to some of my less bloody shots, so go figure.
My takeaway from all this is to try to worry less and really, really try to not let RA rule my life, choices, or mood. Easier said than done, but that’s what I’ll try to do.
EDIT: Just want to add that during my first run after this doctor visit I choked on a bug – it just flew down my throat, gross! And so, another lesson (channel Stewie – What did you learn?): a) don’t run with your mouth open, and b) don’t run at dusk. Let’s hope this isn’t a bad omen for my training, haha.
I got a chance to see Woody Roseland speak this weekend about his experience going through chemo and having cancer. He had actually just gotten done with his latest round of chemo and was doing great. This guy was so incredible to listen to. Unfortunately, I couldn’t find a video of last weekend’s talk, but I did find this other one which is similar.
My favorite moment: “It’s rare that life hands you a gift-wrapped oppportunity to prove yourself. To show yourself and the world what your made of…”
Here’s a bit more on Woody:
Woody is a natural-born entertainer constantly socializing and telling jokes much to the chagrin of virtually every teacher he ever had. Once Woody reached high school he started playing football and quickly moved up the ranks seeing varsity playing time in just his sophomore year. As Woody trained for his senior year of high school football, a nagging pain in his left leg left his doctors, trainers and coaches puzzled. Eventually a biopsy showed that the pain that had sidelined Woody was a rare form of bone cancer. Woody immediately started an intense regimen of chemotherapy along with a complete knee replacement that ended his football career. The cancer returned four separate times, each with its own unique set of challenges. In June of 2011, a four inch tumor was discovered in Woody’s left calf, requiring immediate amputation. During his time in the hospital is when Woody first realized that his affinity for comedy could be combined with his experiences enduring the hardships of chemotherapy. He initially honed his skills by talking and joking with his doctors, nurses, and fellow patients. He now shares his message of hope, perseverance, and positivity everywhere from charity fundraisers, corporate events, to school assemblies and hospital rooms.
Along with a mild flare and a new fun symptom (more on that in a minute), I got a call from the nurse saying that my blood tests flagged my liver function panels as high. For me this means dropping down to four doses of methotrexate per week instead of six and following up with another blood test in a month. This scares me, and is especially bad news to get on a day when your symptoms feel worse than they have in awhile. I don’t want to mess with my meds if their helping. Will my symptoms flare? Will it slow remission progress? So many questions.
Also, there’s this sense of I coulda done more to help my liver while it’s working so hard to process these crazy chemo drugs. I haven’t 100 percent abstained from alcohol (my rheumy said five drinks per week was fine) for example. For those of you on mtx, did you cut alcohol completely? Anything else you’re doing to help your liver?
And then there’s this weird feeling I’ve had all day as if the blood in my arms is burning. Like my arms are on fire from the inside out, especially by my elbows. Has anyone experienced anything like this? Is it a vitamin deficiency, med side effect or RA side effect? Or maybe I’m going crazy. I’ll be asking my rheumy tomorrow, so I’ll let you know what he says.
Despite the burning and flare symptoms, I made myself lift some weights and do some yoga. The distraction was great at least, but now it’s back to burning.
Last weekend I was nonstop – a lots of yoga, a pretty tough hike, a 10K on Memorial Day, tons of walking. I felt REALLY GOOD.
I think I’m paying for it now though. My symptoms began flaring a bit Tuesday and I thought it was just recovery from the 10K. Now however, I’m sitting at my computer, putting off starting my day because I have some morning stiffness I haven’t had in a long while and my wrists are hurting again, ugh. Not to mention I’ve just been extra tired since Thursday – missing workouts and (trying) to go to bed early.
I know it shouldn’t, but whenever my pain feels more acute than normal, my mind goes into what I call “spiral of doom” thinking. Oh my god, the meds aren’t working… Permanent damage is happening. Right. Now. I’ll be disabled. I’ll be in a wheelchair. I’ll have to quit my job. Blah. Blah. Blah.
I’m trying to catch myself when I get into this thinking and replace it with other thoughts. Having symptoms reappear is totally normal. It doesn’t mean you’re getting worse. It doesn’t change the fact that you’re spending a lot more time feeling better than feeling bad. One bad day or week does not null and void your progress.
I just can’t help but wonder if I caused the flare by pushing myself too hard. It’s frustrating though because when I feel good, I don’t want to slow down or hold back. Anyone have advice for striking that balance?
My Naturopath recommended I make smoothies daily have probiotics, fish oil and protein added.
I’ve done some recipe experimenting, and this one’s pretty good:
- 1 Apple
- Fresh Ginger
- 2 Tablespoons Brown Rice Protein
- 3 Tablespoons Cold-Pressed Cod Liver Oil
- 1 Serving Daily Probiotic (I open the capsules and put the powder in the smoothie)
- Almond Milk
- 3-4 Ice Cubes