Archive for category Dealing

Paying The Price

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?

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Consenting to Heal

One more thing from my experience with the naturopath. She had me sign a consent to heal form that I actually thought was a pretty great reminder of the role we play in our healing and treatment plan. I’ll share the whole thing, but one thing that gave me pause was agreeing to “acknowledge and rejoice in all improvement in my health.”

I love this and as I read it, I realized I hadn’t really been doing it. I’ve been so concerned about people understanding what I’m going through, that I probably have been focused on the negative rather than the positive. So when my friend asked me how I was doing and told me I was looking a lot healthier, rather than the “yes, but” or “I’m doing OK, but” flustering statements I usually come back with, I said, “You know what, I really am feeling a lot better. I think my treatment is working. It’s not perfect, but the pain is down and my energy is up, so, yes, I’m doing good.”

Here it is in full:

CONSENT TO HEAL

  • I consent to minimize complaining, blaming, irony and sarcasm because I know that they contribute to illness and make it harder to get well.
  • I consent to maximize praise and gratitude by expressing these toward myself and others as I understand that this will help me get well.
  • I consent to minimize all obsessive worrying and concern about anything at all, including my health problems, because this can make it difficult for me to get well.
  • I consent to acknowledge and rejoice in all improvement in my health.
  • I consent to acknowledge all fear of getting well and any gain I get from staying sick so that I can release what hinders my ability to get well.
  • I consent to minimize and eliminate all behavior that undermines or sabotages my healing.
  • I realize that I deserve to be well.

There you go, I hope you got as much out of this simple form as I did. It’s at least food for thought. You can see more notes from my naturopath visit here.

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Notes From My Visit to a Naturopath, MD

My diagnosis (3 months ago, yikes!) led me to do a lot of research on RA and how diet might effect its symptoms and outcomes. From that research, I’d made some diet changes and added several supplements. I went gluten free, I cut way down on red and white meat and caffeine, I majorly boosted my intake of omega-3s – through fish, avocado and supplements. I also added lots of fruits, veggies, turmeric and ginger to my diet. I started taking more supplements daily than just my multi-vitamin, including B12, Calcium/Magnesium, Coenzyme Q10, Omega-3 Fish Oil, and Zyflamend (New Chapter’s version of an anti-inflammatory daily, which is mainly turmeric).

With all of these changes, I began to wonder if I should consult a professional dietician or naturopath. So when a Living Social deal popped up for a respected, certified naturopath who also held an MD, I jumped at the opportunity. I wanted to share a little of what she told me – keep in mind everyone’s different, so don’t take this as professional advice!!

First off, the whole experience was a positive one. I had never been to a naturopath before or used any sort of homeopathic medecine, so to say I was skeptical is possibly an understatement. I did and do, however, firmly believe that diet can be a powerful agent of change and healing in our bodies. She started off by patiently going through my long (novel-sized now, haha) medical history, family history and symptoms. I liked how we weren’t just talking about RA, we talked about other past ailments and current conditions as well.

Though hearing about the drugs I’m on – methotrexate and enbrel – made her twinge a bit, I liked how she didn’t push me to get off these drugs. She said the idea was to use diet, supplements and homeopathic treatments to get my body ready for when I would get off or cut down on the drugs, so that at that point symptoms would not reoccur. She said she just didn’t want to see me on these drugs forever, and I couldn’t agree more.

She believes that the root of many autoimmune diseases can be found in the gut, and that healing the gut can heal the root cause of the disease, instead of just treating the symptoms. In the end, she agreed with most of what I was doing, but made some tweaks to my diet/supplement plan.

She agreed that gluten-free is the way to go, but also recommended cutting dairy. I guess the idea is that you cut likely allergens to see if you feel better. She recommended a basic gluten-free, casein-free anti-inflammatory diet made up of 40% carbs, 30% protein and 30% healthy fats. She encouraged me to mix up the foods I was eating as much as possible, and also encouraged me to add more protein, even adding red and white meat back into the mix if I wanted.

Two big, but difficult suggestions were cutting caffeine and refined sugar. I’d already cut way back on my coffee drinking, but cutting it out completely? Don’t think that’s for me. Also, I don’t drink sodas or generally do a lot of refined sugar, but cutting it out of my diet completely seems near impossible because I tend to eat out a lot.

Another biggie was to increase water intake. She recommended drinking half my body weight in water every day and adding electrolytes, like Emergen-C or coconut water, to vary it and boost my body’s absorption.

As far as the supplements go, she took me off B12, saying that my Folic Acid was doing a very similar thing and she didn’t want me to have too much of a good thing (apparently a sign of too much of this particular good thing is numbness or tingling up your arms). She switched my Omega-3 fish oil from the supplements to cold-pressed cod liver oil and majorly boosted the amount I was taking. It’s more expensive, but I guess it’s way more effective. She kept me on CoQ10 (100-200 mg/day for energy and antioxidant support), Zyflamend or Turmeric (as a natural inflammatory, she likes the brand Boswelya Plus, but I haven’t tried it yet), and the Calcium/Magnesium (600mg calcium, 300-500mg magnesium/day), but she also added Vitamin D (6,000IU/day) and daily probiotics. She also suggested 1,000-2,000mg/day of Vitamin C for immune support – this has been easy with Emergen-C packets.

On top of all this, she has me on three homeopathic remedies twice daily to heal my intestines and liver, and Ribes Nigrum twice a day for adrenal and energy support and anti-inflammatory properties.

I was feeling overwhelmed at the end of the visit, but motivated to try it. I’ve been doing a mega-smoothie each morning with the fish oil, probiotics, and brown rice protein added (recipes in another post!). I have little gluten free snacks to get me through the day – nuts, fruit, pretzels (GF, of course), and try to do something pretty healthy for lunch, like a big salad with fish protein. Dinner has been a bit of a free for all, but I’m trying to come up with new recipes and welcome any suggestions.

It’s only been a few days on the diet, but I gotta admit, I’m feeling pretty good. It’s nice to have some ‘medical’ validation that there’s a reason to be avoiding gluten and other things (I think my friends either think I’ve turned into the most pretentious eater alive, or I’m trying to lose weight). It’s also good to feel a certain amount of control over the disease. I know I can’t control a lot of things with RA – the drugs, the bad days – but I can control my diet and what I’m putting in my system to help fight it. And the pain and symptoms have been pretty minimal lately, who knows if it’s the diet or the drugs or both, but I’m not complaining! I even ran a 10K on Memorial Day, relatively pain free.

So there you have it, my first visit to a naturopath.

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It’s Totally RAD (I’m weighing in on the RA vs. RAD debate)

I thought you all were more than due for an explanation as to why I prefer Rheumatoid Autoimmune Disease to Rheumatoid Arthritis. Everyone with RA can empathize with that awkward moment when you first tell people about your disease. The reactions for me generally vary from “You’re too young to have arthritis.” to “Arthritis isn’t that big of a deal.” to “What’s that?”.

Even the people that are sensitive to the disease or maybe have even heard of it have misconceptions. They don’t know that the disease is systemic, as in effecting more than just the joints. If they do have a concept of RA, they usually immediately jump to the images they’ve seen of deformed hands. “You have that!? But you look fine.”

I don’t need everyone to understand my disease. And I don’t need their sympathy. But I’m a 29-year-old woman and I hate the stigma of the word ‘arthritis.’ Maybe it’s superficial and hyper-sensitive of me. Maybe it’s because I’m still fresh to the world of RA. Whatever it is, I much prefer Rheumatoid Autoimmune Disease.

You say Rheumatoid Arthritis, and people’s minds turn off. “Arthritis. I know what that is. My grandma has it.” You say Rheumatoid Autoimmune Disease and people just might hear you out and take you more seriously.

Also, I think that RAD just generally encompasses the disease that I am experiencing better. It’s not just the joints. On many bad days, the joints are the least of my concerns. It’s the fatigue and insomnia and even GI problems. It’s the full systemic issues of RA that make it so complex and difficult to deal with.

So there you go. I know they’re just words and, ask anyone, I normally hate arguing semantics, but this one has pushed a button.

Oh, and RAD just reminds me of neon and the ’80s, and that makes me smile. What disease name can do that?

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Why Nurses Matter

I’ve had two more reactions to Enbrel injections. The injection itself usually goes fine (except for this last time when the blue button wouldn’t push down again and it seemed like the liquid went in too fast…), but then the injection site starts to itch and turns into a big red welt that’s both itchy and painful.

The last time it happened I contacted my doctor. I’m lucky enough to have a doctor who is available via email. This is great and I applaud him for answering my questions so quickly. The only problem is, along with the promptness, he can be very abrupt. Sometimes that stings.

His reply to my question about the welts and whether or not I should be concerned or if he had advice was a very short, “…it’s pretty common. Hydrocortisone is fine to use. Let me know if you want to switch drugs.”

No I don’t want to switch. Not if this is starting to work (Is it? I’m not always sure.). The last thing I want is to start treatment again and get used to another drug. So I took it as a sort of “stop complaining” message.

About an hour later, the nurse from my doctor’s office called and said that she knew the doctor had been in touch already, but she had some thoughts. She told me that it could be that I was applying too much pressure to the pen. She suggested holding it more lightly.

It wasn’t much and I’m not sure it’ll work, but man I loved her in that moment. She took the time to realize that I might be looking for more help than he’d given and to offer real, heartfelt, personal advice.

Thank you to her and all the kind nurses out there. We don’t thank you guys enough.

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You Gotta Fight For Your Right to Party

This was me, sans martini. 😉

I threw a bachelorette party for my best friend this Saturday. I wanted things to be absolutely perfect for her. And since I didn’t know many of her friends, I wanted to make sure it was perfect for them as well.

As the weekend approached, I was getting nervous. What if I didn’t have the stamina to make it all night? What if my feet started aching? Would I even have fun, not being able to drink because of the methotrexate?

I’m happy to report it really was better than I could have ever imagined. The night was a blast and everyone had a great time. I struggled a bit at the end, but I partied (sober) with the best of them, finally falling asleep at the hotel room, having girl talk with my best friend about her soon-to-be husband.

I know that I should be aware of my body and respect its limitations, but it felt good to push myself more and (mostly) forget about my disease for awhile.

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From Glutard to Gluten Free Goddess

After being diagnosed with RA, I immediately did a TON of research online. A reoccurring theme was nutrition and diet. I don’t want to tell people to try to fix everything with diet – I’m on methotrexate and Enbrel myself right now – but I do think it’s an important component for feeling better.

Based on research, blogs, books, webmd, magazine articles, conversations with a friend who is a nutritionist and a friend who has an autoimmune disease herself, I made a few changes.

  • No red meat
  • Less white meat (chicken, turkey, etc.)
  • More omega-3 rich fish (hello salmon!)
  • No gluten 😦
  • Less caffeine (and I was a serious coffee addict!!)
  • More green tea (antioxidants)
  • Less dairy (I switched from cow’s milk to almond milk and cut my morning yogurt in favor of fruit)
  • More omega-3 foods like avocado
  • More nuts and legumes to replace cut protein
  • MORE veggies and fruit – lots more

These are by no means the changes everyone should make. A friend with Hoshimoto’s Disease decided to go on the paleo-diet (red meat, nuts, berries, wheat), while another friend with Celiac’s is obviously gluten free.

I’ve had these changes in place for about two months and, overall, along with the drugs, I’m feeling much better! Making these changes has definitely made me more conscious about everything I consume, which is likely a good thing. I’m a single girl with a downtown job – I go out to eat a lot and am not a huge fan of cooking, but this diet has forced me to pay more attention to menus and eat at home more often. I also love to workout and therefore usually am able to maintain a steady weight while eating whatever I want, so being really conscious about eating healthy has been a huge shift.

It has been a lot of fish, salads and smoothies. Here are three of my fave smoothie concoctions so far:

Can’t Beet It

  • Beet
  • Kale
  • Apple
  • Ginger
  • Water
Ice Cream Substitute
  • Strawberry
  • Banana
  • Unsweetened cocoa
  • Almond milk
  • Ice
Bavonano
  • Avocado
  • Banana
  • Shredded sweetened coconut
  • Chia seed (for added omega-3)
  • Almond milk
  • Ice
Best gluten-free brownie mix I’ve found (it was a big hit with my officemates, glutards and non-glutards alike): Arrowhead Mills Gluten Free Brownie Mix
I’d love to hear if anyone out there with RA decided to make diet changes. If so, what? Has it been successful? Any recipes to share?

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This is a Gift

I spoke to a friend of mine tonight who is about to undergo surgery for a detached retina. Now, this surgery and the whole circumstance sucks in a million ways. First of all, your vision is at stake. Secondly, you’re essentially bedridden for possibly a month (already she’s had to hold one position on the couch for a week as they tried to have a gas bubble push her eye back into place).

But talking to her tonight, she was so positive it was inspiring. Yes, she is scared to go into surgery and frustrated at her “bad luck” of randomly getting a detached retina, but she’s also strong and optimistic. She said that she was looking at this as a lesson, that maybe she should be less wrapped up in the petty things. That maybe there was a lot she could learn from this experience.

She also caught me off-guard by apologizing for not being more there for me during the last couple months. That having this happen has made her truly realize how hard it is. I didn’t feel like she owes me an apology, but I do understand what she means. I can absolutely empathize with what she’s going through.

This conversation made me take stock of the emotional rollercoaster I’d been through since my diagnosis (and even before!) and how my own priorities had changed. I’d like to say that having a chronic disease means I never sweat the small stuff, but of course that isn’t true. What is true is that I appreciate the little things in a way I don’t know if I have before. The spring flowers coming up. A pain-free downward dog. Stumbling across a really good cupcake that fits my new gluten-free diet (more on that in another post). And it really makes me appreciate the bigger things. Like the days I go for a run. A really good laugh. A truly supportive friend. My family.

It’s not like I never throw myself a pity party (believe me, I can throw a pretty good pity party), but I’d like to say that the strong me outweighs the weak one. And I’d like to think there’s a lessons I’ve learned, and lessons yet to be learned from this whole experience.

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Loneliness vs. Solitude and the Quiet Spaces In Between

Edward Hopper Painting

Since I was diagnosed with RA, I have been more understanding with myself and my own body. This often means that rather than staying out, or going to get a post-work happy hour, or making social commitments back-to-back like I was so used to doing, I make more time for me to just relax.

I cherish this time to myself to read a book or take a bath or catch up on a TV show that no one else cares to watch (Glee!). This time is beautiful solitude.

But there are times, when having to turn down plans because I’m too tired, or just adding up all that solitude turns into something else. Suddenly, I’m not basking in the self-indulgence of my “me” time, I’m agitated and wishing someone was there with me, or that I was anywhere else.

I came across this article in Psychology Today, 10 Quotations and Reflections on Loneliness, that really rang true for me.

In case you don’t follow the link, here’s one quote to leave you with:

“Solitude is fine but you need someone to tell that solitude is fine.” —Honoré de Balzac

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Positive Thinking is Positively Powerful

I went to a luncheon/talk today that focused on meditation as a powerful healing tool. The speaker talked about the way meditation can actually force real changes in your brain and body. The concept of neuroplasticity (literally, the idea that brains are more malleable than we had imagined) is growing.  For more on this, check out this NPR story.

I have to admit, I don’t do meditation (though maybe I’ll try now…). I find it difficult to sit still and really turn my brain off. I do however do yoga, which I feel like I get a lot of calmness, flexibility and strength out of.

The speaker today shared some “tools” for engaging in a more positive, calm brain state, or, as she put it, a para-sympathetic brain state. I’ll share my two favorite tools:

The first is simple. When you’re worried about the future, as in, Oh my god, what does RA mean for my life? Will I be disabled?, tell yourself, “This is going to be better than you could ever imagine.” Worried about giving a speech? This is going to be better than you could ever imagine. Concerned about an upcoming doctor’s appointment? This is going to be better than you could ever imagine. I think you get the point…

The second tool came from an audience member. He was an older man, and he said that throughout his life, he’d always prided himself on his ability to solve problems. He said he’d recently gone to a counselor with a problem that he was having a lot of trouble solving. He told us that the counselor changed his entire perspective and fixed the problem with some very simple advice: “Approach this not as a problem, but as an adventure.” With that, the man said he could stop worrying about something that couldn’t be “fixed,” and could start focusing on living again.

I think this advice is great. My new mantra: RA is not a problem, it’s an adventure. An adventure that is going to be better than I could ever imagine.

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