Visit to the Rheumy and the Enbrel Chronicles

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.
An Awesome, Inspirational Speech
Posted by My RAD Life in Dealing on June 5, 2012
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.
Double Whammy
Posted by My RAD Life in Drugs, RA/RAD, Symptoms on June 5, 2012

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.
Paying The Price
Posted by My RAD Life in Dealing, Fitness, RA/RAD, Running/Marathon, Symptoms on June 3, 2012

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?
Omega-3 Rich Smoothie
Posted by My RAD Life in Alternative Medicine, Diet, Recipes on June 1, 2012
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
- Kale
- 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
Enjoy!
Consenting to Heal
Posted by My RAD Life in Alternative Medicine, Dealing, RA/RAD on May 29, 2012
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.
Notes From My Visit to a Naturopath, MD
Posted by My RAD Life in Alternative Medicine, Dealing, Diet, Gluten Free, RA/RAD, Symptoms on May 29, 2012
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.
Gluten Free – More Than a Fad Diet
Posted by My RAD Life in Diet, Gluten Free, Uncategorized on May 11, 2012
Gluten Free – More Than a Fad Diet
This article affirms what many of us know, gluten free is more than a fad diet. Though I’m not sure being on a gluten free diet has eased my RA symptoms, I’ve had friends with Celiac’s and gluten intolerance truly benefit from this diet.

It’s Totally RAD (I’m weighing in on the RA vs. RAD debate)
Posted by My RAD Life in Dealing, RA/RAD, Uncategorized on May 9, 2012
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?

New Drug to Head to FDA Approval Panal
Posted by My RAD Life in Drugs, RA/RAD on May 4, 2012
U.S. panel seen backing Pfizer’s arthritis drug hope
Like any new drug, reading about this makes me both optimistic and wary. The idea of a pill drug to replace injectables is very appealing though! Check out the story here.

