Archive for category Symptoms
Dropping the RA Bomb
Posted by My RAD Life in Dairy/Casein Free, Dealing, Diet, Gluten Free, RA/RAD, Relationships, Symptoms on September 8, 2012

I think that authoring this blog has really helped me open up about my RA. A lot (not all yet, but maybe I’ll get there) of the shame and nerves that came with “admitting” to someone that I had this disease have faded.
I’ve had two recent experiences telling a date about my RA. The first time I’d ever told anyone about my RA aside from close friends and family and doctors was on my second date with a very sweet guy (maybe a little on the early sign, but I don’t think there are hard and fast rulles with this). We were at a pretty nice, new restaurant, where, being gluten and dairy free, I couldn’t eat half the menu. I asked the waiter about some gluten-free options and happily chose a modified scallops dish.
My date kept inquiring about my diet, giving me ample space to drop the RA bomb. “Are you allergic?” No, not exactly. “Are you trying to lose weight?” What? No…
Finally, toward the end of dinner, I brought it up. The timing was probably a bit odd, given all the opportunities he’d presented me with before. At any rate, I said something along the lines of, “Since you were asking earlier, the reason I’m on this diet is because I was diagnosed with Rheumatoid Arthritis in March.”
Ka-boom. The RA bomb had landed.
I went on to explain that the elimination diet helps you determine if an allergy or sensitivity to a certain food is making your symptoms worse.
He just nodded, asked how I was feeling. Then he asked if it was hard to do physical things, and immediately apologized for his invasive question. I didn’t mind it though, it’s a fair question. I hadn’t heard of RA before my diagnosis, but if I had, it would have probably surrounded the disability/disfigurement horror stories of the disease.
So I brushed it off, saying, “No, it’s really under control with the meds. I barely notice it.” Yes, that’s kind of a lie. It’s not totally under control and I do notice, in fact, I’m probably hyper aware of all symptoms.
I figured that if we kept hanging out, it would inevitably come back up.
I’m happy to report that the world didn’t implode. He didn’t run away and never call again. He didn’t treat me like a victim. It just was a fact.
The second time was similar, but the window wasn’t diet, it was drinking. Since I’m on methotrexate, which is hard on your liver, I’m not drinking much (my doc says 4-5 drinks per week – no, not all at once! – is fine). So we were running, and he was talking about wanting to not have any alcohol for 30 days, so I talked about how I really wasn’t drinking much either.
Then, ka-boom! The RA bomb once again landed.
He asked questions about my treatment and I answered honestly, and hopefully without any trace of shame. I even told him that my symptoms aren’t totally under control, but that clinical remission is my goal and hopefully where I’m headed.
Again, he didn’t run screaming for the hills. He did call me again.
Lesson learned. Your honesty and courage allows other people to react in a similarly courageous, empathetic way. So, no more shame. Thank you blogosphere for allowing me to reach this point. From here on out, I’m owning it. I’m no longer admitting to a shameful thing, I’m informing someone about a part of my life.
Monday Morning Motivation
Posted by My RAD Life in Dealing, Fitness, RA/RAD, Running/Marathon, Symptoms on August 27, 2012

The last couple weeks have been tough. I moved into a new condo and, very ambitiously repainted the whole thing and did all the moving myself. This of course led to long days and nights and completely messed up my schedule.
Not only was I exhausted from the grind of repetitive paint strokes and heavy lifting, when my schedule gets off, a bizarre sort of insomnia sets in. I’m exhausted, but I can’t fall asleep. I’m in bed, but my mind is wide awake and I’m hyper aware of every ache and pain in my body.
Needless to say, my workout schedule got off track. This only led to my sleep schedule going further down the late night rabbit hole, leading to more pain.
So late last week, I decided I had to reset. I forced myself to get up Wednesday morning to run, despite being up until about 2am reading to try to turn my brain off. Than, Thursday, I made myself wake up to lift some weights. I took the weekend off to do a lot of apartment rearranging and resting, and this morning, I’m proud to say I woke up before my alarm feeling well rested.
Hopefully this means my schedule is finally reset and I can go back to less insomnia and less pain.
For those of you out there stuck in a routine that’s not working for you, my advice is simple: break the cycle. I know, I know, WAY easier said than done. But I didn’t say it wasn’t going to suck, or that you had to be graceful. The point is just to bust out of your rut in anyway available to you. Sometimes baby steps only take you so far, sometimes it takes a leap (or, if your feet hurt, one giant, gentle step :).
My Left Wrist
Posted by My RAD Life in Dealing, Drugs, RA/RAD, Symptoms on August 21, 2012
I wish I had had enough foresight to take before and after photos, but unfortunately I didn’t. After two cortisol shots, my left wrist is almost back to normal!
A bit of history: I hadn’t verbalized it, but pre-diagnosis I noticed that there was something odd about the bone of my left wrist – there seemed to be two little boney wrist bumps where there really should have only been one. I didn’t really spend too much time thinking about it. Just a little, huh, that’s funny. Fast forward to my first rheumatologist visit: my doc – “How long have these rheumatoid nodules been here?” me – “Say what?”
Of course, him pointing them out and giving them a scary name only brought them to the forefront of my mind. As I began treatment, they didn’t seem to be going down. Then, several months ago, they seemed, in my mind anyway, to be getting worse. Where there were once two smallish bumps, there were now three merging into one massive, swollen, misshapen wrist.
Whenever I caught a glance of it, my mind immediately leapt to the gloom and doom thinking of, oh my god, the disease is getting worse, treatment’s not working. Then there was a little voice in my head telling me I was embellishing both the severity of the physical deformity and what it meant to my disease prognosis. Both voices were making me a bit crazy.
Needless to say, I started wearing some big bracelets. Out of sight, out of mind, right?
Well, not exactly. My next rheumatologist appointment rolled around and I asked if he thought my left wrist was getting worse in an off-handed way. He didn’t say yes, but he just said, “I’ll shoot medication directly into it, that should work better.” Right. In my doc speak, that means yes.
Before I knew it, he was spraying cold numbing spray on my wrist and poking two massive needles of cortisol into either side. Truly, it didn’t hurt much. If you ever have to do this, it’s really nothing to be afraid of. It was more psychologically painful than anything (that’s right, I’m still not used to needles). The spray feels a bit uncomfortable and my wrist stayed kind of numb for awhile after.
Other bad news (at least I take it this way), my doc and I decided to raise my dose to eight Methotrexate pills per week (up from six) along with weekly injections of Enbrel. It’s hard not to be discouraged, because when I first saw my doctor, he threw out early fall as the time we may be able to have my RA in remission and take me off some drugs. The new time is March 2013. Just in time for my marathon for those of you who are faithful readers.
I’m trying to replace discouragement and disappointment of my progress with optimism. And hey, if I’m going to be on this crazy toxic drug, I might as well be taking enough for it to be effective.
I guess I was a bit shaken after my appointment (I need to stop going to these things alone), because I got into an accident with a parked car while parking at my apartment. I was trying to not use my left wrist, which wasn’t something my doctor told me to do but between the shots and the numbing spray, it felt weird to use it. My car is hurting worse than the other guy’s. For those of you who think you might be getting this procedure, bring a friend to drive you home.
The good news of all this is that my wrist is back to the size and shape of a normal person! No more big bracelets (unless I wanna wear them – they are pretty). No more constant reminder of my disease! Yippee!
Medicine Milestone
Posted by My RAD Life in Dealing, Drugs, RA/RAD, Symptoms on July 26, 2012

I filled up my first sharps container and sent it away in the mail today. I gotta say, I felt a glowing sense of accomplishment. Damn, that’s the number of times I’ve stabbed myself in the thigh, the number of pep talks I’ve given myself, and how far I’ve come.
So I deserve a gold star, or a gluten/dairy free cupcake LOL.
On that note, I wanted to tell you that I’ve had two weeks of perfect injections. No blood, drama, pain or swelling. No freakouts, tears, or anxiety. Here’s my new process: let the needle warm up for half an hour – definitely not less. When it’s even a little cold it stings more and I think it results in more welts. While it’s warming, preferably by the bathtub, I do something relaxing and distracting. A foot bath or read or both. About five minutes before, I ice my thigh. Then, during the shot I pull my skin a little tight, take a few breaths to relax and always press the injection trigger on the exhale. Afterward, I’ve been applying a natural, plant-based anti-swelling ointment that I found at Pharmaca. I think it does help reduce swelling.
Anyway, hope these tips help you. And congrats to all of you who have already reached your first sharps container milestone!
The Quest for Knowledge
Posted by My RAD Life in Dealing, RA/RAD, Symptoms on July 24, 2012
I have to admit, it’s been a rough couple weeks. Stress in my personal life and friends’ lives, as well as some important projects at work and working out a bit too hard, has taken its toll on my body.
Symptoms that I left behind months ago seem to be rearing their ugly heads. The bottom of my feet ache and swell to the point that no shoes make them happy. My feet hurt even doing small things, like pushing down the gas pedal. I feel very, very fortunate that this doesn’t prevent me from running and working out. For whatever reason, I lace on the tennis shoes and feel OK for that hour or so. It’s worth it physically and mentally, even if I might pay a little afterward.
My left wrist has visible nodules that seem to be getting worse, not better. Just the fact that I can see the effect on RA can send me into a mental tailspin. So I’ve been trying very hard to replace negative thoughts with positive, neutral or grateful ones.
Example:
Me: Oh my god, look at my wrist. Pretty soon RA will take over my body and I’ll be totally deformed.
My reply to myself (no, I’m not schizophrenic): Just because you have a couple Rheumatoid Nodules doesn’t mean your RA is worse. They’re not hurting you, they’re barely noticeable and they won’t be there forever.
Me: Shut up and let me wallow.
OK, so clearly I have a little work to do.
In my attempt to change my thought patterns and gain perspective, I’ve ordered two books off Amazon. I’ll post reviews here when I’m done.
- A Resilient Life: Learning to thrive, not just survive with rheumatoid arthritis by Kat Elton

Too often, people faced with a disease such as rheumatoid arthritis hear words like, “disabling,” “progressive,” or “tragic.” “Tragic” may be what people are saying but the real tragedy is that these often repeated words do nothing but harm to those who hear them. They completely ignore a very real truth: physical issues can absolutely lead to positive transformation, action, challenge, inner strength, deep courage, and compassion. This unique book is written by someone who knows her subject well. Kat Elton, an occupational therapist and woman who’s had rheumatoid arthritis since age two, knows that people with RA don’t need false hope or to be told what to do. What they do need is to be led toward believing in themselves and improving their reality no matter what it is. Part practical guide, part workbook, part memoir, this book demonstrates that although there is no magic bullet or cure for rheumatoid arthritis, there is a way to live well with this disease. - The First Year: Rheumatoid Arthritis: An Essential Guide for the Newly Diagnosed by M.E.A. McNeil

Rheumatoid arthritis (RA), a disease characterized by inflammation of the joints, is one of the most disabling forms of arthritis and affects over two million people in the United States. Without proper treatment it can lead to long-term joint damage, chronic pain, loss of function, and disability. From the first moment of her diagnosis, author M.E.A. McNeil took charge and educated herself on every aspect of her condition. Now, as a “patient-expert,” she guides those newly diagnosed step-by-step through their first year with RA. McNeil provides crucial information about the nature of the disease, treatment options, diet, exercise, social concerns, emotional issues, networking with others, and much more. The First Year—Rheumatoid Arthritis is an essential resource for everyone who wants to be an informed, active participant in the management of their condition.
Woe is My Feet
Posted by My RAD Life in Dealing, RA/RAD, Symptoms on June 21, 2012

No, these aren’t my feet. I wish they were. These feet look happy and pain free.
The last couple days were rough. Once again, my feet were hurting and I was consumed by thoughts of “oh my God, the drugs aren’t working” and “it’s because I’m down to only four methotrexate per week (and Enbrel).” Or, maybe it was just the normal ebbs and flows of life with RA. But of course my mind doesn’t like that thought either. That thought means it might be like this forever.
So with my feet hurting, two days ago I thought wisely that I should not wear flipflops, which let my feet swell, but aren’t supportive for the painful pad of the foot. Of course heels were out of the question and tennis shoes would just throw my outfit too far off (I’ll sacrifice a little bit of style, but I just can’t go that far). I opted instead for my expensive, less-than-flattering, mary-jane-style shoes with nearly-orthopedic inserts, lots of support, and an adjustable velcro strap to counter swelling.
My feet walked me to work relatively happy. By lunchtime, they were so swollen, no amount of loosening that little velcro strap was going to help. I spent the next few hours barefoot (probably didn’t thrill my coworkers). I forced my feet into the shoes and found myself a ride home – no way was I gonna walk if I could help it.
I ended my night with my aching, painful, and now blistered feet in a cold foot bath. It helped a little.
Cue the next day. Guess what, I woke up with hurting feet. They were back to that point where rising up on my toes, even a little, is pretty excruciating. Flipflops were out, my expensive RAD shoes were out, tennis shoes were…out (sorry! I’m just not ready to bring tennis shoes into my work outfits yet!). I felt pretty good about another option: boots with no heel and inserts that would give my feet padding and allow them to swell. Yes, the weather was unseasonably hot for June, but I could sport boots with a dress and make the look work. The great style/pain compromise settled, I happily set out on my short walk to work.
Immediate pain, which of course pained me in another way: it was a painful reminder of how badly my feet hurt in these shoes in my pre-diagnosis days. Only a few hours later, I could feel my feet swell to the edges of the boots. That was another rest my feet kinda night.
And then there’s today. I wake up expecting pain, but I feel fine. Overjoyed, I lace up my tennies (to workout, not to go to work!) and go for a run. It’s a little shaky, but I’m feeling so much better, it’s powerful. My feet are feeling good, so I opt for my greek sandals with plenty of padding on the sole. Mostly pain free all day.
Don’t get me wrong, I’m not complaining since today is a great day for my feet, but the pain rollercoaster of RA is physically and mentally exhausting. There’s just no predicting when a flare will hit or how bad it will be. And there’s no science to why it gets better, at least no science that I’ve figured out.
As my rheumy says, you’ll drive yourself crazy wondering what causes what. I guess it’s best to just take care of myself as well as I can – plenty of sleep, minimize stress, keep at my high fruit, veggie and omega-3, no dairy and gluten diet, and appreciate the good days. At least, that’s what I’m doing today.
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.
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?
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.


