Archive for category Fitness
Magical Thinking #1: I will find the perfect shoe
Let’s start with my favorite magical thinking first: somewhere out there, exists a perfect shoe for us RAers.
I know I’m lying to myself with this one, but the quest is never ending. I love shoes, so, even with the blisters and sore feet pads, it’s a pretty fun quest to be on.
I have two new shoes to test out in the upcoming months: Faux Fur-Lined Tom’s & Yoga Sling Sanuks. The box was waiting on my doorstep as I came home from work today and I seriously did a happy dance. Shoes! 🙂
So far they’re both very comfortable. I’m bringing both on an upcoming trip, so I’ll let you know how they hold up.
Magical Thinking #2: I can gargle my sore throat away
Way less fun is my sore throat that refuses to subside. It started last Friday and has progressively gotten worse, not better. Despite heaps of vitamin C, garlic, immune boosters, salt water gargling, and my ACV elixir. I was on the fence about whether to skip my Enbrel and methotrexate this week, because both are immune suppressants. My RA symptoms have definitely been more active recently, so I begrudgingly skipped the drugs. Sure enough, today they’re flaring a bit again. So much ugh, only new shoes could cheer me up (see above, yay!).
The surprisingly not awful, throat-soothing, but in no way a cure, ACV elixir recipe:
- A generous splash of organic apple cider vinegar
- A dash of cayenne pepper
- A dash of ground giner
- A heap of honey
- A squeeze of lemon
- Enough hot water to mix it up and make it palatable
Magical Thinking #3: I’m ready to start training for another marathon
It’s counter intuitive, I know. I’m sick, my RA symptoms are flaring, I just bought two new pairs of shoes and they have nothing to do with running…. But there’s something about being stuck on the couch that makes me brainstorm big goals. I’ve mapped out a 10k in May, a half marathon in July, and marathon in October.
We’ll see. The timing may change and the races may change, but I’m motivated to push myself to train for something, despite (or maybe because of) the pain!
Rude Awakening posted some great answers to the “30 Things You May Not Know About My Invisible Illness” questionaire in honor of Invisible Illness week: Invisible Illness Week: 30 Things You May Not Know….
She also reminded me, it’s that time of the year again! My answers are below.
30 Things You May Not Know About My Invisible Illness
1. The illness I live with is: Rheumatoid Arthritis (plus Raynaud’s Phenomenon and Chilblains)
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: I noticed what I now believe were RA symptoms as far back as 2009. I’ve had Raynaud’s since at least age 14, though possibly much longer. Chilblains began in 2012.
4. The biggest adjustment I’ve had to make is: Slowing down more often to give my body a break.
5. Most people assume: I’m fine now that I’ve been to the doctor, because I’ve gained weight back and look healthy. They don’t realize that I’m treating symptoms that are chronic and occasionally flare even with treatment – I haven’t “cured” my disease.
6. The hardest part about mornings is: This absolutely depends on the day! Some days mornings are the best, some I have so much fatigue and stiffness I don’t want to move.
7. My favorite medical TV show is: Scrubs!
8. A gadget I couldn’t live without is: Comfy flats and boots, a jar opener, and warm socks and gloves!
9. The hardest part about nights is: Some days it’s fatigue, some it’s pain, some it’s just knowing I have to get up the next morning, some are totally fine.
10. Each day I take 4-15 pills & vitamins.
11. Regarding alternative treatments I: I love acupuncture and find it helpful and relaxing. Would if I could get more massages! I watch my diet and have cut down on many inflammatory foods, including dairy and gluten. I incorporate anti-inflammatory food/supplements into my diet as much as possible: ginger, turmeric, cinnamon, omega 3s. Perhaps most importantly, I try to do something active most days. On rough days, it may just be a very short walk, on good days, it’s runs, swims, boot camps, dance or yoga.
12. If I had to choose between an invisible illness or visible I would choose: Invisible, even though it can be frustrating. Some days I look and feel normal and am able to forget about RA. Those are the best. Plus, being a private person, I prefer being able to choose whether or not I want to share my illness with others. Its invisibility affords me that choice.
13. Regarding working and career: I’m an entrepreneur working on a tech start-up that I co-founded. This means I likely work harder under more stressful conditions than my health and doctor would like. It also means I’m able to work flexible hours that allow me to make my doctor’s appointments and work from home on bad days (even from bed sometimes!). I try to remember to take time to myself to rest and replenish and focus on being healthy.
14. People would be surprised to know: I agree with Rude Awakenings: “Fatigue is as debilitating as pain – some days more so. And I feel like a definition is needed here. Fatigue = flu-like symptoms, not simply being sleepy.” On days with bad fatigue I struggle to do anything, including just talking to the people I love.
15. The hardest thing to accept about my new reality has been: Relying on drugs to feel well and accepting my body’s limitations on rough days.
16. Something I never thought I could do with my illness that I did was: I agree with Rude Awakenings here too: “Talk about it so openly.” When I was first diagnosed, I didn’t think I’d be educating people on my illness or reaching out to strangers!
17. The commercials about my illness: All feature older adults, seemingly in their 60s. They perpetuate the myth that Rheumatoid Arthritis is the same as Osteoarthristis and mainly effects older populations.
18. Something I really miss doing since I was diagnosed is: Not having to wonder how an activity, meal, or drink will effect my RA or interact with my meds. Not having to plan my life and trips around bi-weekly medication, bi-monthly blood tests, and tri-monthly doctor appointments.
19. It was really hard to have to give up: Control over my body. Oh, and dairy, gluten, alcohol and heels (I still enjoy all four in moderation).
20. A new hobby I have taken up since my diagnosis is: Blogging!
21. If I could have one day of feeling normal again I would: Similar to last year – I would just go, go, go all day and night, not worrying about lack of sleep, stress on my body, any of that.
22. My illness has taught me: Celebrate the good days and all that my body does for me. Always be patient and kind to others – invisible illnesses are a good reminder that you really don’t know what others are struggling with!
23. Want to know a secret? One thing people say that gets under my skin is: Agree with Rude Awakening again, absolutely this: “When people equate their grandmother’s osteoarthritis (or their own!) in her wrist to my autoimmune disease.”
24. But I love it when people: Ask me how I’m doing even if I look fine and want to learn more. I also love when people share their own experiences with autoimmune diseases or offer to put me in touch with friends who also have RA.
25. My favorite motto, scripture, quote that gets me through tough times is: I have many. Here’s a kinda nerdy one: “We take what we can get, Champ, and we do our best with it.” – Cordelia Chase. Another one along the same vein: “Do what you can, where you are, with what you have.” – Teddy Roosevelt
26. When someone is diagnosed I’d like to tell them: It gets better. The pain will decrease when you find the right meds. The loneliness will start to dissipate when others with RA come out of the woodwork and you find online communities to connect with.
27. Something that has surprised me about living with an illness is: Most people, even those close to you, do not want to think or hear about your illness. Everyone prefers to think that all’s well.
28. The nicest thing someone did for me when I wasn’t feeling well was: My boyfriend does this well: we’ll order in and watch a movie, and he won’t let me entertain thoughts of guilt over all that I didn’t accomplish that day.
29. I’m involved with Invisible Illness Week because: I want to create more awareness and understanding of autoimmune diseases. There’s so much that is unknown, underfunded and misunderstood.
30. The fact that you read this list makes me feel: Grateful. Thank you for taking the time, and for your support of Invisible Illness Week!
The hardest thing for people to understand about RA is the ebbs and flows of fatigue and pain symptoms. One moment, I can be so tired I’m unable to move from the couch, every step met with sharp pain or a dull internal throb. The next, I’m hiking a 14er or doing a high altitude half marathon. I don’t blame people for being confused.
But here’s what mountains and marathons mean to me:
When I have a flare, I get depressed. Yes, I know logically that physical symptoms have nothing to do with my mental state and that I am separate from my symptoms. But not feeling like yourself or being able to do what you want to do is depressing.
I think the symptom that gets to me the most is fatigue. The all-encompassing heaviness makes me apathetic, which leads to many hours on the couch in front of the TV, which makes me depressed, which makes me more fatigued, which makes me more depressed, and on, and on. I think you get the picture.
So on days I feel good, like really good, I am jubilant. Unstoppable.
Sign me up for a 4:30am wake up call to climb three 14,000 foot mountains in one day. Upgrade me from that 10K to a half marathon.
Give me a challenge, I want to take on the world. I want to celebrate my body and all of its strength, power and agility.
ESPECIALLY because I know all too well what it feels like to have that strength, power and agility seep away. Because of that, I embrace the good and celebrate it when it comes around.
As I told my parents, I’ll take the achy, sore muscles and satisfactory tiredness of a strenuous workout over RA pain and fatigue ANY DAY. In fact, the feeling of sore muscles makes me happy because it reminds me how strong my body is.
Sometimes pushing myself like this means I “pay for it” with more symptoms later. I used to try to regulate my exertion because of that. But I’m realizing that’s not me. I’d rather go big when I can and rest when I need to than live a more regulated life (with seemingly as many random flares) somewhere in the safe zone.
Now I know I’m quite lucky to be able to climb mountains and run races. For many with RA, this is not at all a possibility. But I hope that within any limitations you have, you are able to celebrate the good days with your own version of a mountain, acknowledging all that your body still does for you.
As my birthday creeps closer (tomorrow!), I realized I totally missed another anniversary: the end of two years with my RAD diagnosis.
My first year RAD anniversary was a really big deal to me. Probably because I’d set an unrealistic expectation that one year was long enough to “beat” RA into remission, get off drugs, be pain free, and run a marathon.
One year later, I was only able to accomplish one of those goals: I successfully (though not pain free) ran my first marathon.
By the time my first year anniversary approached, I already realized that “curing” a chronic disease (read: no cure) in one year was pretty unrealistic. As was getting off drugs that were keeping my disease at bay and my pain under control (usually).
My one-year anniversary marked many things for me. I accomplished the huge, scary goal of running a marathon in the face of a huge, scary diagnosis. I also found a bit of respect and acceptance for my disease.
My second anniversary of my diagnosis came and went un-celebrated. I think this speaks to the enormous thing I’ve learned in the last year: you are not your disease, so allow yourself to forget about it as much as possible.
This year has been full of ups and downs, so obviously forgetting about my RA hasn’t always been in the cards. During a flare when you’re in pain, while dealing with methotrexate side effects, or visiting your doctor more than your best friend, or while giving yourself shots, or dragging yourself in for blood tests, it’s pretty impossible to forget your disease.
BUT, in the in between times, I’ve gotten a lot better about letting go. I’ve taken on old hobbies again. I’ve relaxed my diet a bit. I really feel I’ve gotten pieces of my old life back.
So, even though I’m a month late for my anniversary, I think that’s something worth celebrating.
There’s other things worth toasting to too – I’ve successfully moved from 10 methotrexate pills per week to 6, I’ve gotten WAY better at giving myself shots, my liver tests have been stellar despite a bit of wine indulgence, spring is coming and my circulation is already improving, and I’m feeling really good and mainly pain free.
I know it’s odd to acknowledge the anniversaries of a diagnosis you didn’t want or ask for, but I hope your anniversaries bring something to celebrate too.
I have running on the brain.
This is probably not the best thing to be thinking about, as I promised myself that due to last year’s Chilblains, this year, I would take a break from running in the cold. Well, guess what, it’s January and it’s cold, but I want to run! And no, the treadmill just doesn’t cut it for me.
The weather was nice this weekend, so I went for a gorgeous run on the mesa. The only problem is that there were still puddles and a bit of snow coverage.
Anyway, I think that run, combined with two days of skiing prior and one day of wearing my favorite, not-so-comfy boots post-run (But they’re vintage!! How can I say no to them when they stare at me from the closet that way?) was the perfect Chilblains trifecta. Sure enough, my toes are painful, swollen, itchy, red and purple. 😦
It hasn’t stopped me from wanting to run however, it’s just getting me dreaming of warm runs and destination races. And in my daydreaming, I am imagining crossing the finish line on my second marathon. This time sub 4:30.
I’ve been looking, and the Medoc Marathon sounds like a blast. A run through French vineyards with wine and cheese served at water stops? Mais oui, s’il vous plait.
Is anyone else planning a big race for 2014? Has anyone done the Medoc? And most of all, anyone out there a runner with bad circulation and/or Chilblains who has advice that doesn’t involve the treadmill? Merci beaucoup!
NYTimes: Ask Well: Is Jogging Bad for Older People?
This one may be for the ladies, but I think you’ll understand when I say that shoes can be so much more than shoes. They reflect your style, they help define us to the world, and they can change how you walk, strut, and feel about yourself. So where does that leave you when you can’t wear the shoes you want? When you’re stuck with shoes that don’t reflect who you are?
Alright, the shoe story actually starts with my wisdom teeth extraction. I got my wisdom teeth – all four, all impacted – removed back in mid-June. To say healing didn’t go smoothly is to put it lightly.
First off, the initial swelling lasted about two weeks before going down (with one mild dry socket). When it finally did go down, I was ecstatic. The only problem was that the left side of my chin was still pins and needles numb, which is uncomfortable and distracting. Of course, there’s apparently not a whole lot they can do about numbness except wait.
With the swelling down, I jumped back into working out because I’d made a goal to do a sprint triathlon (.5 mile swim, 12-17 mile bike, 3-4 mile run) by the end of the summer, and I was woefully out of shape.
Then fast forward to right before the Fourth of July and suddenly the right side of my jaw was in a lot of pain again. I went to visit my dentist, who at this point was pretty sick of me. He told me to wait it out.
Finally my jaw was so painful and swollen that I made an appointment to see my dentist and a new oral surgeon in the same day. My dentist again told me to wait. So I went to the oral surgeon, who told me that the extraction was so complex, my dentist should have referred me out and never should have attempted it in office. He also said the X-rays that my dentist had been working off of were abysmal.
Well, great. Of course I felt like an idiot, because I had a similar incident with an impacted tooth in high school. My dentist at the time thought that he could do a procedure to reveal and attach a brace to an impacted tooth. Mid-procedure, he leaves me sitting in the dentist chair, awake and bloody with a mouth full on cotton. Turns out he can’t do it, so they cart me away to an oral surgeon to knock me out and finish the operation. I may just have shit luck with dentists.
I ended up switching my care to the oral surgeon, if only because my dentist and I were getting pretty tired of my frequent visits.
Anywho, the new guy was worried my jaw had been fractured during surgery, which turned out to not be the case. He sent me away saying that probably my muscle ligaments had been severed and were having difficulty reattaching because the bone they had been attached to was no longer there. So I went on my less-than-merry way, being told again to just be patient.
But then it got even worse, so I went back to the oral surgeon (bless his soul, aside from the initial consolation fee and the cost of new, more sufficient X-rays, he hasn’t charged me a dime). The OS decided to do a biopsy of my jaw and found out that I had a blood tumor (super gross word meaning that blood has been collecting in my jaw where it shouldn’t have been – also called a hematoma). So… That was really f#*king gross. He had to poke me in a bunch of places inside my cheek with large needles and drain the blood. He also found and extracted two bone spurs, pieces of bone that didn’t get removed during surgery and were trying to work their way out of my jaw. My OS put me on five days of antibiotics.
And here’s where the shoes come in: to cheer myself up, I went shopping. I found myself the cutest shoes and bought them despite not really being able to wear heels because of my RA and their uncomfortably high price. At any rate, in the store I convinced myself that I could wear heels if I wanted.
Maybe heels are a state of mind? Like if they’re cute enough, and well-made (read expensive and Italian), I could wear them. Right? They made me feel feminine and pretty, and I really needed to feel that.
Wrong. Every time I went to wear them, my feet were more swollen than they’d been in the store and it was a blow to my ego. Each time I decided sore feet on top of a swollen jaw wouldn’t make me feel better, but not being able to wear the shoes I wanted to was making me feel worse.
After that I was STILL in pain and swollen, but I guess it was more because of all the needle pokes. A couple days post operation I started getting better and I was seriously soooooooo happy. I danced around my living room beaming.
I went back to some lighter workouts, thinking that maybe I still had a chance at a triathlon in August.
Then, a week later, wham. I found myself back at the oral surgeon’s office, getting a new hematoma drained from my right jaw. Painful, time-consuming grossness. This meant another couple days of recovery and another seven days of antibiotics. Which also meant another week of not taking my RA drugs since fighting infection and restricting your immune system don’t exactly go hand in hand.
It’s been a week and a half of not going anywhere near the gym or my running shoes, trying to keep my blood pressure low, sleeping on my left side only, and trying to keep my head elevated. I’m happy to report that, today, I feel mostly fine and look normal. Yay!
As for the shoes, they met a not-so-happy end. Yesterday, I made the heart-breaking choice to return them, unworn. In the end, I decided that no shoes were better than having pretty shoes mock me from inside my closet. Begging me to choose fashion over comfort.
More than giving up my shoe dream, I had to give up my goal of doing a sprint triathlon this summer. All of these teeth complications have just made it too hard to train. Making the call to choose to give my body a break and room to heal has been hard.
Giving up on goals and dreams is not usually my style. But there’s two ways to look at it: defeat or wisdom. I’m trying to go with wisdom. (Hey, if I can’t feel pretty, at least I can feel smart!)
I’m sporting my Barcelona marathon tee in support of the victims of the Boston Marathon bombings and the running community in general.
I watched the tragedy unfold yesterday and was absolutely speechless, horrified, and angry.
Who would do this? Why? And why are they so cowardly, they haven’t come forward to claim responsibility yet? What did they hope to gain if it wasn’t credit for the attacks?
Don’t they realize that runners will not be terrorized. If I’ve learned anything in my year training for my first marathon, it’s that RUNNERS’ SPIRITS WILL NOT BE BROKEN.
We run to defeat all odds and expectations. We run to stay free. We run.
For those who died or lost limbs, my thoughts are with you. This is such a terrible tragedy. You have the support of the running community. An international community of people who will not give up.
I just got back from my mega trip to run the Barcelona marathon! I’m very proud to say that thanks to you guys, I raised $555 for autoimmune disease research and awareness (http://www.razoo.com/story/Barcelona-Or-Bust-Running-For-Autoimmune-Diseases). That’s $55 more than my goal!!!
I’m also proud to say I MADE IT! I’m not going to lie. It was very hard. My body was aching, my feet were screaming, my legs were shaking and my time wasn’t great, but this pic is me crossing the finish line! 🙂
Here’s my breakdown (obviously, I was slowing down at the end):
10 km time: 01:02:39
1/2 Marathon time: 02:17:40
30 km time: 03:23:27
42 km time: 04:54:30
I’m not sure there’s another marathon in my future, but I am so proud of this one. I’m also happy to report that my body recovered quickly. I was able to go see a FCBarcelona football game that night, do yoga the next day, and thoroughly enjoy the rest of my trip (more on that in another post).
I have been meaning to write a post about Raynaud’s Phenomenon and Chillblains for some time. So why not today while I’m watching snow fall peacefully and thinking, that won’t be good for my toes.
First off, for those of you that don’t know, Raynaud’s is a circulation condition in which cold temperatures or strong emotions cause blood vessel spasms that block blood flow to the fingers, toes, ears, and nose. Meanwhile, Chillblains is a tissue condition that occurs with cold exposure, causing redness, blisters, pain, inflammation and itching.
For me, what this actually means is that I have struggled with cold hands and feet from poor circulation my whole life. When I hit puberty, this translated into my hands and feet occasionally (usually at really inopportune times, because Raynaud’s can be associated with emotion) turning really spectacular shades of blue, red and purple. In my late 20’s, the most common symptom is losing all blood flow to my hands and feet when they’re extremely cold or in high altitude. This causes them to go white and numb.
Then, this year rolls around and my toes are now prone to the really painful, unattractive blisters associated with Chillblains after cold exposure. Fun!
I’m only writing about this because it took me forever to diagnose these two problems. When I first got Chillblains, I thought I’d had a run-in with a troop of vicious spiders that had bit up my toes.
Now, unfortunately, the only treatment I’ve been prescribed is avoiding cold (Ha! Who are we kidding? I ski and snowboard… and I’m training for a marathon in the winter). Other tips include warming your extremities slowly when you come in from the cold (much like frostbite). I’ve also found putting witch hazel on my toes twice a day helps a little.
Though my doc says these are two separate issues from Rheumatoid Arthritis, I’m not convinced it’s unrelated. I am curious how many of you autoimmuners out there also suffer from circulation issues? If so, any tips?
AND, in case you didn’t see my last post, please consider donating to help me reach my goal of raising $500 for autoimmune disease research and running my first marathon! I’m only $200 away!