Posts Tagged Rheumatoid Arthritis
Running and the Sundance Film Fest
Posted by My RAD Life in Dealing, Drugs, Fitness, RA/RAD, Running/Marathon, Symptoms on January 20, 2013
I ran the longest I’ve ever run this weekend – 17 miles! My marathon training friend and I combined a 5-mile race, a 2-mile in between run, and a 10-mile race, for one epic morning.
The run went pretty well. I was worn out after, and my legs definitely started feeling it around mile 13 or so. The great thing is that all the aches and soreness seems to be normal “I just ran 17 miles” pain, not Rheumatoid Arthritis pain. And that makes me so happy to be sore. š
On another note, I’m going to the Sundance Film Festival next week. This will be my second year going. I have mixed feelings about the event last year. It was a couple of months pre-diagnosis, and I was struggling to be normal and figure out what the hell was wrong with me. My feet were aching, my mood was low, and my energy was pretty non-existent.
The streets of Park City were snow-filled and icy, which made walking on uncooperative feet and poorly-chosen shoes one of the worst experiences of my life. Despite all that, we saw some great films and apparently I had enough fun that I signed up again.
This year’s gonna be a little different. First off, my feet are way better than they were a year ago. Second, I’m only packing ridiculously not-cute, but totally ice/snow appropriate shoes. Third, I can’t drink.
As Sesame Street would say, “One of those things is not like the other!” That’s right, not drinking at Sundance is really not something I’m particularly looking forward to. Drinking is kind of part of the Sundance culture – where celebs drink and bars and clubs literally pop up over night. So everyone I’m going with is understandably excited to party. Hopefully with Joseph Gordon-Levitt. š
I, however, just got back a blood test that shows that my over-worked liver enzymes are once again elevated. This is a fun side effect of taking Methotrexate, which happens to be a chemotherapy drug that’s pretty hard on your liver.Ā So, that’s fun.
My friend was excitedly talking about the parties and how our friend is psyched to be ending a detox with a drink-fueled weekend at Sundance. Great. So I told her that I was worried that the whole thing was going to be drinking and I may be seeing more movies than all my friends to avoid the bar scene. To which she replied, “You’re not drinking??!!?” Uh, yeah, still got that disease goin’ on…and still on that drug…which you know because we hang out all the time…so, yeah, I’m not drinking.
I’m trying to look on the sunny-side though, because I’d rather be sober and enjoying Sundance pain-free, than be drinking to try and dull the pain in my feet, making it all the more difficult to walk (go denial-style logic!).
Joseph Gordan-Levitt and Tony Danza posing for pics at this year’s Sundance. (January 18, 2013 – Source: Larry Busacca/Getty Images North America)
Hero Foods From a Chef With RA
Posted by My RAD Life in Diet, Recipes on January 14, 2013
Hero Foods From a Chef With RA
Sasha who writes the blog RA My Way mentioned Seamus Mullen’s book, Hero Foods, in a recent blog post. I haven’t checked out the book yet, but love his philosophy and had to share!
23-year-old cyclist Jack Bobridge reveals he has RA
23-year-old cyclist Jack Bobridge reveals he has RA
& is managing well with medications… I like this article because it a) breaks the stereotype that RA only affects menopausal-aged, inactive, overweight women; b) is incredibly brave of him to “come out”; and c) is hopeful because his meds are allowing him to continue cycling and live the life he wants. Cheers to that, Jack!
Never, Never, Never Give Up
Posted by My RAD Life in Dealing, Fitness, RA/RAD, Running/Marathon, Symptoms on January 10, 2013
Happy new year everyone! Today, I feel like 2013 is going to be a great year!
I guess that between the holidays and being stuck in a bit of a flare without the energy to put a positive spin on it or the desire to add to the negativity you often find online, I didn’t have much to say over the last month since my last blog post. At any rate, it’s a new year and I’m back!
Let me catch you up on both my RA and my marathon training. Over the last month or so I’ve been having more inflammation and pain in my feet. The three smallest toe joints in each foot have been pretty stiff and painful. It wasnāt hurting more with running, but it was making me just not want to go running. Or do yoga. Or do much of anything at all.
Despite all that, I’ve started my ski season. It makes my foot, especially my right foot, extremely angry and swollen to ski. Itās a little reminiscent of last yearās ski season, before I knew I had RA, but thought my feet mysteriously had grown because it was such a painful struggle to put my boots on (Nope, they were just majorly swollen with RA!). At least this year my boots go on fine. I just start to feel them swell and press on the boot about halfway through the day. (Yeah, yeah, maybe I should lay off the moguls, powder and trees, but whereās the fun in that?) It’s a little disappointing that Iām not just ācuredā, but I’m grateful to be back on the slopes.
Combine my mad ski foot with lack of sleep because of an unexpected, but welcome holiday houseguest, and RA symptoms seemed to be creeping up on me.
Then, like I like to do, I pushed myself a bit too hard. After a week of Christmas parties (read: not enough sleep) and a day of mogul skiing, I decided to go on a 10-mile run with my two Barcelona marathon training buddies. My pace is slower than theirs, but I tried to keep up anyway, and the run was pretty rough. My foot didn’t feel great, I accidentally hyperextended my knee on a steep downhill, and the cold weather and wind made my normally-dormant asthma flare up.
After that, my marathon training started feeling pretty damn stupid. And there’s nothing like seeds of doubt to make everything – from pain to happiness to stress – worse.
I knew I needed a break. I took two weeks off of running completely, only skiing twice (foot wasn’t exactly happy about the skiing). I spent the time doing holiday stuff, eating and relaxing. It felt good to rest, but a little dispiriting. In all that resting, I was secretly giving up on the marathon.
Then last Saturday rolls along. My training buddy and I were supposed to be at 16 miles (wtf, right?!), but my feet were hurting (especially the right one) and just the thought of one mile was enough to make me want to go back to bed. But, I didnāt. I strapped on my running shoes and drove to meet her. I warned her that one mile might be my limit and she could be on her own, and she agreed that I should prioritize my health.
So, we took off. Mile one felt good, mile two great. We got lost in conversation, and suddenly we were at mile eight. I started playing music, and miles 10-14 literally had me grinning. It felt SOOO good to be running. My feet felt fine. Honestly, it was so weird. The last two miles were a little rougher, but totally manageable. Nothing like the miserable 10-mile run Iād done over the holidays.
16.4 miles later, I felt great. I mean, beaming ear-to-ear, exhilarated, and feeling for the first time in nearly a month that a marathon was possible and not the dumbest idea Iād ever had.
Another bonus from my awesome run: I woke up the next day and my feet DIDNāT HURT. I donāt really have an explanation for this. Maybe the run and the stretching after actually stretched them out in a way they needed. Maybe my flare just ended (topic for another post, but my symptoms seemed to disappear with my waning hormone cycle – read: period). Whatever. I didnāt care too much why, I just felt great. AND Iāve continued to feel great all week – my mood and energy levels are way better; Iāve done yoga, weights and a six mile run.
Moral of the story: please donāt give up. Or, in the brilliant words of Winston Churchill, āNEVER, NEVER, NEVER GIVE UP.ā I feel like it really is that simple.
Sure, listen to your body. Take a break if you need to, but donāt get sucked into that creeping, enticing lazy, depressive apathy that can take over your life. Strap on your shoes, go for a run (or whatever that activity is that makes you feel happy, powerful and strong). Just never, never, never give up.
RAD Fish Oil
Posted by My RAD Life in Dealing, Diet, RA/RAD, Symptoms on December 10, 2012
Fish Oil!!
So there’s some science to the obscene amounts of fish oil my naturopath has me consuming… yeah!
Marathon Training & Raw Food
Posted by My RAD Life in Dairy/Casein Free, Diet, Fitness, Gluten Free, Recipes, Running/Marathon on December 6, 2012
Mile 4.5 water break!
Just had to share that last weekend I had a great solo run – 13.2 miles (that’s a half marathon!!) on a beautiful, dirt, hilly trail. I was running VERY slow, but I had a great time and it was FUN! Barcelona Marathon, I’m on my way!
On another note, I tried Kari Carr’s Mediterranean wrap recipe. This was my version of the cashew cheese:
Throw the following into a blender and blend until cheesy (consistency of hummus):
- 2.25 cups of raw, unsalted cashews (I didn’t presoak because (a) what does that even mean? (b) why would one do it? and (c) who has the time?
- 1 cup almond milk (I used almond milk instead of water because I thought, why not?)
- handle of Italian parsley
- sprinkle of chia seeds (they’re apparently good for you and give you energy, so this was another addition to Kris Carr’s recipe)
- sprinkle of salt & pepper
I put the “cheese”, black olives, sundried tomatoes, and pumpkin seeds, onto collard greens for a super yummy (trust me!), healthy lunch. š
My super yummy wrap! š
The Science Behind Acupuncture
Posted by My RAD Life in Alternative Medicine, Dealing, RA/RAD on November 30, 2012
The Science Behind Acupuncture
I’m sure we’ve all been told to get acupuncture for some sort of ailment, but should you expect results? This article looks at studies of acupuncture’s affect on fighting pain in osteoarthritis, and other chronic pains. It then looks at whether those results translate to rheumatic diseases, like rheumatoid arthritis. Like all thing rheumatic, the answers are a bit ambiguous…
Thanksgiving Update: So Many Things To Be Grateful For
Posted by My RAD Life in Dairy/Casein Free, Dealing, Diet, Drugs, Fitness, Gluten Free, RA/RAD, Running/Marathon, Symptoms on November 29, 2012
My Thanksgiving and the last week has been awesome, and I’m so grateful for it.
My marathon training had been off to a slow start as I was dealing with some symptoms, fatigue being one of them. It was really hard to motivate.
My last two long runs – 10 and 11 miles – have been great. I did the second long run on Thanksgiving with my parents’ dog. She’s a great motivator & keeps me going fast.
So now I’m feeling like a marathon may actually be a possibility for me. I’ll be getting X-rays in February, so I’ll be able to see if I’m doing damage, but so far I feel great. I love the feeling of getting out and running. I’m so grateful to live in a place with such awe-inspiring running trails.
Then I spent the rest of Thanksgiving cooking – 2 gluten-free, dairy-free pumpkin pies, 1 gf, df pumpkin bread, and a grilled zucchini/squash salad tossed with garbanzo beans and olive oil. Yum! My family was very supportive of my restricted diet (with a little teasing, of course!). I am consumed with gratitude for my supportive family and friends.
Also, perhaps one of the biggest things I’m thankful for: my symptoms have been really minimal. AND, I’ve gotten the hang of the syringe, so self-injection is finally pretty painless. The verdict: I definitely like the syringes better than the pens. Way less pain, bruising, swelling and uncertainty.
I hope you all are off to a great, pain-free start to the holiday season.
Stabbing Yourself In The Thigh Isn’t Easy…Take Two
Posted by My RAD Life in Dealing, Drugs, RA/RAD on November 19, 2012
The needle was like 5x that size in real life š
Alright, I’m not proud, but I can’t lie to you guys: It was really freaking hard to give myself my first syringe injection of Enbrel.
I’ve been using the pen injectors since March – 8 months! – but had been having problems with post-injection welts and bruising and button delays/glitches (I would press the top part of the pen and nothing would happen). You can read more about that here, here, and here.
My marvelous nurse (who clearly thinks I’m tougher than I am) thought that I may be ready to try syringes. According to her, patients say the syringes are less painful. Also, since you’re in complete control, you can’t have glitchy buttons or not know if it worked.
So, she gave me four syringes and told me to try it out.
I got home on injection night from a really great dinner date and set up. I was feeling pretty confident. I’d even had some wine at dinner, which I thought should make things a little easier.
I let the medicine get to room temperature, washed my hands, sat down, put rubbing alcohol on my thigh, iced my thigh, pinched the skin, went for the “dart-like motion” to inject myself…and froze. So I tried placing the needle on my thigh, thinking I’d just push it in…froze again. And then cried because I was frustrated. Why couldn’t I just do it?
I texted a friend the pic you see to your left and said I needed a pep talk, to which he replied, “Yikes. You’re a courageous woman. Find the life energy in your fear.”
I don’t know about life energy, but the validation that it was a huge, scary needle made me feel a little better.
I tried again. Still couldn’t make myself do it. At this point, it’d been about an hour and it was a little past midnight. Frustrated and wishing my cat had opposable thumbs and could do it for me, I called my little sister.
She’s as wussy about needles as I am, but she does have an epi-pen (that she’s never used), so I thought maybe she could do it for me. She said yes, I could come over to her (college) apartment and she would try her best to stab me in the thigh. I said I’d give it one more go and call her back.
The thought of driving over to my little sister’s and making her do it gave me renewed inspiration to man-up and do it myself. I would never want to give her an epi-pen! I knew that it would be hard for her to do it, even though it’s not her thigh.
So I looked on YouTube and found this video. Seeing that this big guy was freaked about self injection too made me feel better. Also, his reaction – actually, not so bad! – gave me confidence.
I didn’t do the “dart-like motion,” I just gently put more and more pressure on the needle until it punctured my skin and the full thing disappeared into my thigh. Success! I took a breath and pushed the liquid into me slowly. It didn’t hurt, it didn’t sting, it didn’t even bleed when I pulled it out.
It’s less painful then the pen at least. I think it will go a lot better this week, since I know what to expect.
And for those of you about to self-inject for the first time, I am here to report that it may be psychologically difficult to give yourself an injection, but it really truly is ACTUALLY, NOT SO BAD.
True Grit
Posted by My RAD Life in Alternative Medicine, Dairy/Casein Free, Dealing, Diet, Doctors, Drugs, Fitness, Gluten Free, RA/RAD, Running/Marathon on October 9, 2012
GRIT:Ā noun –Ā firmness of character,Ā determination or strength of character
I think some people are born with a natural abundance of grit. I think my grit, the will to persevere and the optimism to keep going is learned, practiced and fickle.
I’m still trying to figure out why sometimes I’m so strong and determined, and why other times I want to pull covers over my head and never leave my bed.
I think something about the beginning of October triggered the ostrich response in me. Suddenly I bounced from I can do anything to I don’t want to do anything anymore.
When I was diagnosed with my RAD new disease back in March, my doctor marked autumn as the time when I could possibly be in remission and we’d be looking at getting off the methotrexate, and later the Enbrel. My September doctor’s appointment was instead met with an increased dosage of methotrexate and the news that the MTX may not even be working yet. Doc’s new goal for remission: spring 2013.
That’s actually kind of good news because it means when it starts working, I’ll feel a lot better. But also, really?!?!
I left the doctor’s appointment feeling fine about it, but then October came and all optimism drained out of me. I was suddenly so, so, so done with MTX day and freaking injections. All things gluten appeared appetizing, dairy seemed impossible to avoid, myĀ vitamins made meĀ nauseous, and I felt like if I even had to look at fish oil again, I’d vomit.
What’s the point? What if it doesn’t go into remission? Am I really going to do all of this forever? I don’t want to have this life. I didn’t ask for this. F#@! RAD and all the stupid S**! that goes with it.
I stopped taking the vitamins and I laxed up on the fish oil. I cheated on my diet. But I kept going on the drugs.
My negativity quickly started to annoy the hell out of me. So there I was, standing over my morning folic acid and fish oil supplements, a wave of nausea overwhelming me, and I snapped. Out of it that is.
My grit was back.
What’s the point? The point couldn’t be more obvious or important – it’s my health. Is it worth trading because I’m a wuss about injections, I hate swallowing pills, and the smell of fish oil is gross? Obviously not.
So I’m staying the course. I’m back on track. (Although I am being a bit more relaxed about supplements for my sanity’s sake.)
I’m thinking March is gonna be a great month for me. I’ll be running my first marathon and hopefully I’ll officially be declared in remission and will be breaking up with methotrexate. Maybe Enbrel and I will even get to say goodbye. Here’s hoping.
In the meantime, I’m happy to report that I think the higher dose of methotrexate is starting to work. My compromised immune system and the changing season has led to a cold, but otherwise I feel great. No joint pain, no feet pain, less fatigue, less trouble sleeping. I even went on a 12 mile run a couple weekends ago.
Now I just have to figure out how to keep my grit from disappearing on me again.
My RAD Life 