Archive for category Dealing
Crazy Sexy Advice
Posted by My RAD Life in Alternative Medicine, Dealing, Diet, Fitness, RA/RAD on January 22, 2013
The lovely Kris Carr
I happened upon Kris Carr’s blog through a recipe. I loved her recipes and her attitude, so I decided to check out her book, Crazy Sexy Cancer Survivor (apparently there’s a documentary too, which I haven’t watched yet).
I felt a little dramatic reading it because everything she was saying really hit home for me. I have Rheumatoid Arthritis, not cancer. I’m not going to die of RA. My life’s not at stake. But many days, it feels exactly that way. I have the least sexy form of cancer possible. The kind that doesn’t get a book or sympathy. It’s an invisible disease with a name that diminishes its magnitude on sufferers’ lives. A disease that eats you from the inside out and can take everything away from you if you let it. Your joints, your freedom, your hope. So, in that way, I identified with Kris. As I was reading her book, I replaced the word “cancer” with disease, and it became a book about the power of survival.
One of the most important things I got from the book, which I totally wasn’t ready for, was the concept of healing versus curing. She writes that many of the healthiest people she knows are living with disease. This really hit home because I think I’m the healthiest I’ve ever been in my life, minus the RA. I watch what I eat, I workout, I don’t drink, I try not to sweat the small stuff, and I take care of myself. She talks about how people always say they want to be “cured” and get their lives back, but with healing, you can’t go back to that life. You will change your life after a diagnosis. Hopefully many of those changes will be for the better.
She writes about how important it can be to re-align your expectations of a cure and to be OK with healing over clinical remission. All you have to do is look at my “About Me” page to know that this is NOT my current approach. I want to kick this thing in the butt! I want it to be out of my life completely! But it made me think, could I be OK with healing to the point of this disease being manageable with minimal drugs? It’s sure not as much fun as not having it at all, but it is worth a thought. Sometimes the goals of “cure” and “remission” can just be added stressors because they may not be in the cards and they certainly may not be in your control. What is in your control is an attitude of healing. Constantly improving, learning, living, hoping. Not giving up. And maybe that’s enough.
I recommend you give it a read or browse through her blog. There are powerful nuggets there on changing your attitude, diet and lifestyle to promote healing. Here are my favorite quotes:
“During the time of darkest night, act as if the morning has already come.”
-The Talmud
Kris Carr quotables:
- On making intimidating life/diet changes & just living:
“You don’t have to be good at what you choose. In fact, go ahead and embrace rotten. You already have cancer (RA, a disease), why would bongos intimidate you?” - “Success is six degrees of separation.”
(i.e. take small steps on big goals) - “The secret to happiness is the decision to be happy.”
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. 🙂
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. 😉
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. 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)
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 wasn’t 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. It’s a little reminiscent of last year’s 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 where’s the fun in that?) It’s a little disappointing that I’m not just “cured”, 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 didn’t. 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 I’d 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 I’d ever had.
Another bonus from my awesome run: I woke up the next day and my feet DIDN’T HURT. I don’t 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 didn’t care too much why, I just felt great. AND I’ve continued to feel great all week – my mood and energy levels are way better; I’ve done yoga, weights and a six mile run.
Moral of the story: please don’t give up. Or, in the brilliant words of Winston Churchill, “NEVER, NEVER, NEVER GIVE UP.” I feel like it really is that simple.
Sure, listen to your body. Take a break if you need to, but don’t 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!
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 😉
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.
Emotions and Other Sharp Things
Posted by My RAD Life in Alternative Medicine, Dealing, Doctors, Drugs, RA/RAD, Running/Marathon, Symptoms on November 15, 2012
No, it has nothing to do with this post, but this baby hedgehog is waaaay cuter than any of the sharp things in my life. Give me a baby hedgehog over acupuncture, blood tests and Enbrel any day!
I went for my second acupuncture appointment a couple of nights ago.
I would love to say that it was an enjoyable, healing, relaxing experience. But, in truth, my heart was racing and blood pressure was high before the needles even came out. I’m not sure why – it wasn’t so bad last time.
So my heart was racing, and I was sweating, and my acupuncturist and an observing student (who I had recently met at a party and who now knows way too much about me – awkward!) were sticking me with needles, and I was talking myself down from a panic attack.
Weirdly, the needles hurt more this time than the first time. I felt each one going in, and some of them felt uncomfortable as they were in my skin.
After the acupuncture, they gave me earnest tips on how to improve my circulation – ginger foot soaks, chi generating hand exercises…
They were well-meaning and those things might actually work, but in that moment I was so overwhelmed. How many things can I try? What other ridiculous suggestions is the world going to throw at me?
So leaving the acupuncturist, I just felt depleted. Every part of me felt heavy and I felt overwhelmed with emotion.No matter how much you do, how many new things you try, how much sleep you get, how kind you are to your joints, how much effort you put into positivity, there’s always one more – one hundred more – things you should be trying.
It was enough to make me want to curl up in a ball under my covers and cry.
The following morning I saw my rheumy. The report was more of the same – I’m improving, I’ll improve more. Things will get better.
I’m due to get X-rays in February and am very curious to see how those will go.
He did say that he’s doesn’t think going down on meds before my marathon (March 17th) is a good idea, which is disappointing, but I understand the reasoning. I don’t want to not be able to do the race, and I don’t want the race to do more damage than good.
I told him about the problems I’ve been having with the Enbrel pen (button not depressing correctly, bruises and welts, etc.) and my wonderful, amazing, patient, kind, God-send of a nurse gifted me four Enbrel syringes to try out. I am about to do my first one (post for tomorrow!) and am so nervous, I’m procrastinating by writing this.
The beauty of the syringe is that you have complete control of when the medication enters you and how fast. The downfall is that you have complete control and you get to see the whole thing. AHHHHHH!!!!!
I’ll let you know how my injection goes…
You’ve Come a Long Way, Baby
Posted by My RAD Life in Dealing, Doctors, RA/RAD on November 9, 2012
I know I’ve come a long ways from the girl who almost fainted every time she had blood drawn.
How do I know this? Because yesterday I went in for a blood draw and got a new girl. I warned her that my veins have a tendency to “roll away” from the needle, making them easy to poke, but hard to draw blood from.
So she pokes my vein, and then a few seconds later – in a baby voice – I hear, “Come here you little vein.”
Eww. For so many reasons, eww.
At this point in a blood draw I usually get faint, but I was feeling fine.
Then I hear, “Oh, we have a squirter!”
Seriously? A “squirter” apparently means blood had shot up my arm. Even looking at that, I was feeling fine.
The other arm did the same roll away, so she went to find a more experienced technician. Through all these pokes I felt completely fine.
So, my veins aren’t cooperating anymore than they used to, but I’m doing a lot better, and there’s something to be said for that kind of progress.
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