cate.to.date

graphic designer by day, power yoga teacher by night. 27 years old and diagnosed with rheumatoid arthritis in 2012. i'm here to track about how i feel and what i'm doing about it. from symptoms and medications, to diet, supplements and yoga.

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yeah, so what.

i'm writing this post-afternoon-16oz.-work-beer, so let's just say life isn't so bad.

and i keep writing sentences to start this post and then find myself holding down the delete button. i don't want to complain. i really don't have a right to. nothing is THAT bad. 

yeah, my foot hurts. yeah, i found out the "mass" or "thing" or whatever in my foot that started this whole crisis isn't actually a mass at all. it's just a super upset joint that's swollen and receiving the brunt of this ra. it's like the tiniest joint in my body (not really but, honestly, its a knuckle in my foot) that chose to get attacked first. and yeah, it's probably going to be that way forever (if not worse, because there's nothing to "get rid of" or "take out" now that we know this). fine. 

and yeah, the enbrel i was supposed to take this week was defective and didn't inject and now i'm three days past due for medicine and my foot is getting progressively more swollen and immobile, to the point that i kind of wanted to cry this morning and had to limp for the first few hours of work. and yeah, i had to make about 10 phone calls yesterday to get that defective enbrel pen replaced. so what.

i'll get my overnighted enbrel delivery tonight. i'll take it in the morning. i'll feel better in two days. my fingers don't hurt. not even after 17 days without an injection. they're not even swollen. they're like the opposite of swollen even a little bit. i keep my rings on while i sleep and at yoga and can take them off easily in the morning and post-practice. i can't complain.

i guess the point is this: it's a bit scary to realize that when you stop taking your medicine for three days and you are in almost-crying-limping-down-the-stairs pain for a bit, you realize the significance of what you're body is doing to itself and the magnitude of how much modern medicine can help. 

yeah, i can eat all the anti-inflammatory foods i want. pineapple, yes. limited wheat and gluten, yes. all those other things that millions of different blog posts tout? sure. those things are really important to do to just be a healthy person. to live responsibly. but there's something to be said about medicine and what it can do to improve your life when you're not just a healthy person in some regards.

i'm a firm believer (as many know, and some rebute) in the powers of humanity and ancient medicine. of yoga; of reiki; of food as medicine; of your mental state, stress level, and environment as a groundwork for your health.

but i believe in modern medicine too. and that a lot of times, it makes the difference between the good days and the bad.

so yeah, that is all. so what.

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my professor / friend julie elman draws peoples fears and this week, she drew mine. here's what she has to say about my fear and fears in general:

——

The Fear Project :: What's ahead with rheumatoid arthritis

Catherine, 26, was diagnosed with RA last year. She wrote a lot about what it's been like to live with this disease, but I was only able to include a fraction of what she expressed here. There are so many unknowns for Catherine, a yoga teacher, writes, "I've actually come to terms with everything a lot better than I expected."

——

About The Fear Project:

"Boo.

Admit it. You’re afraid. Very afraid. Of something. Spiders, perhaps? Getting a root canal at the dentist? The stranger out there who will kidnap your kids?

I illustrate people's fears. Working with their words, I just try to visualize what those fears could possibly look like. I work quickly and post my pieces no matter how I feel about them. It's a good way to get over any fears I have about the creative process.

Fear not, I keep telling myself. Fear not.

— Julie M. Elman

Got fear? Send it: ffearproject (at) gmail (dot) com"

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juice cleansed.

today is day three of three of my first ever juice cleanse. my friend aimee owns embody natural health in lawrenceville and makes these raw, organic juices from local produce. i felt good, not only accepting the challenge of cleansing but also supporting my friend's small business. that made the price worth it, alone.

i chose to do this cleanse now, along with three of my coworkers, to clear my dependency on caffeine and sugar (recent addictions, probably due to stress, ongoing winter, and a slippery slope), improve sleep (i clench my jaw to the point of waking with headaches frequently), and regain better energy overall (i've had horrible mid-afternoon fatigue and mood swings). plus, after the pneumonia vaccine that drained me, i wanted to restart my body in a natural way and see how the clean energy affects my joints.

the first day was not nearly as bad as i expected. i was excited and proud of myself. the second day was hard. i was getting tired of the same juices and the sweetness of them was becoming overbearing. i never really felt hungry, but i was craving crunchy salty foods frequently. after work on day two, i "let" myself eat half an avocado, some cantaloupe, and one stalk of celery with all-natural peanut butter. i felt better, and learned a big lesson: withholding yourself from clean, healthy snacks is ridiculous, even during a cleanse. i figured this choice would also lead to less indulgences post-cleanse.

today is the last and i've almost forgot i'm cleansing. i'm definitely sick of the green and red juices now, but know the end is very near. i'll probably introduce similar foods as i did last night back into my diet for dinner. i didn't use all 6 of the daily juices, so i have some left. i'll freeze a few to use in smoothies or just drink them as energizing snacks for the remainder of the week.

the results have been great. my caffeine headaches and afternoon slumps of tired crankiness are gone. work doesn't feel as stressful and my yoga teaching has been more energized. i've slept better, but i still feel tension in my jaw (time to call the dentist, i think). my skin has noticeably less clogged pores to pick at, and my knuckles are free of all swelling, where on sunday my rings were uncomfortable to wear. overall, my energy and happiness is up, and hey, my jeans are a little loser.

when i do a cleanse again, i'll approach it differently. next time i'll likely just buy one day worth of juice instead of three and intermix them with a raw veggie diet. it'll be more affordable and seem less like torture. i'll also continue to schedule my cleansing with friends. having a support system was key, if not for more than encouragement and a few laughs about how tough the red juice was to finish after day one (tasted great, just really rich).

these results do bring up questions for me: should i be gluten free? does that have something to do with my joint relief or is it the sugar, processed foods, and dairy elimination as well? i'm going to continue to eat as clean as possible to keep up this energy level. i'm also going to try to notice how certain types of food affect my body. almost a year ago i tried eating for my blood type (basically, the paleo diet). i may go back to that general way of thinking: heavy on greens and good protein. light on everything else. we'll see how it goes.

glad i could check this off my bucket list! thanks aimee for a great first cleanse.

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in six years when you're due for another pneumonia vaccine, remember: it sucks for multiple days and makes you hate life.

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things to remember from my rheumatologist:

went to the doctor yesterday. he reminded me of many things i forget to keep in mind, so I'm writing them down this time:

— you probably wont have any heart or lung issues if your ra is under control.

— you probably wont become deformed or immobilized with joint damage if your ra is under control.

—you know if your ra is under control by the number of joints that are affected currently and how well you generally feel on a daily basis.

— increased cancer risk may just be a cause of the disease, not of the enbrel.

— you could get cancer from something totally unrelated anyway. you just stop the ra drugs, treat the cancer, and go from there.

— once again, you probably won't get cancer.

— if the enbrel stops working there are at least 7 other drugs to try.

— new drugs are being made! including a pill that was just introduced in november. 

— you can't really aim to feel perfect, you can aim to feel mostly good though. little things will always bother you, let them go.

— get a flu shot every year. you will not become paralyzed. it will protect your sad immune system.

— bloodwork every six months. a must-do.

— we have made progress. my ra is under control. we found a medicine that works. and it'll work til it doesn't anymore and that's ok.

—we can consider my strength of disease as "in remission."

— most importantly: doctors who remember the tiniest details of your previous conversations, and who know you by way more than your chart after only two face to face visits are absolutely irreplaceable and completely necessary. you can feel like your doctor has your absolute interest at heart.

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trip to the rheumatologist today and I learned about this: a new RA drug, FDA approved in November. pills not injections with a whole new approach. don't need it (yet anyway) but so encouraging to see new developments for treatment!

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yoga: hands, feet & shadows.

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cause & effect.

it's been almost six months since i've updated, and although i have a lot to say, i want to try to keep it concise. mainly because things are going well!

the major updates: i dumped dr. d. — i found a new doctor, dr L, the head of rhuematology for upmc, and i love him. he sat with me for an hour and said "tell me everything" as he wrote it on a blank sheet of paper. he held a meeting with numerous radiologists just to review my second foot mri and walked me through why it was so strange. he didn't want to put me on enbrel right away until he understood my case a bit better. all wins.

i started enbrel — after about a month under dr L, my symptoms were coming back (changing seasons perhaps?) and i was getting frustrated. he didn't know if we'd be able to even get enbrel approved for me since insurance companies require a certain degree of disease and number of joints affected to approve. dr L seemed to sweet talk them though because within a few weeks i was at his office with nancy-the-nurse who was helping me do my first injection. 

giving myself shots — this is not nearly as scary as i thought it would be. once a week, in the thigh, using an epi-pen-type tool that makes it so easy. it practically does the work for me, so other than a 15 second pinch, it's nothing. the amazing thing is, the enbrel works...

off the other meds! — ... and because it works so well, i am completely off the prednisone and plaquenil. all i take daily are vitamins now - it's still kind of shocking. i noticed my symptoms dissipate in days. the enbrel works by killing the tnf inhibitors in my immune system and those are the guys that make the system attack my joints. without them, i'm pain-free and not causing permanent damage.

my immune system is fragile — that said though, my immune system is basically broken down on purpose. i got a severe cold and the flu that was going around in january that pretty much drained me. i need to be extra careful to wash my hands at work, after shopping, and post yoga. because we're weakening my immune system, my life chances for getting lympoma or other cancers is about 3x higher than what my chances were off the enbrel, but that's not really a worry. the bigger worry is letting an infection (cold, flu, etc.) take over without being treated. this is typically how people with ra get really sick. but i just check in with dr L when i'm sick, skip my weekly injection til i'm better, and all is well.

the minor side effects — with enbrel, i get a couple minor side effects. clear mucus collects in my lungs, especially in the morning. some days it's worse than others, but honestly, i'm a mucus-y person so this isn't bad or all that a-typical. i've cut back on a lot of dairy to lesson it. i also get large red, hot, itchy patches at the injection site on my leg about 5 hours after my injection. they last for about two days and then go away. at first this was really irritating to me, but its normal and honestly, much better than the alternative. i recently went to puerto rico and i put a lot of energy prior to our trip, planning when i was going to take my injection. i wanted to take it prior to the trip, so i didn't have to a) travel with the injection b) have a red welt on my leg while in a bikini and c) so i didn't have any joint pain. i ended up taking it just before the trip and dealing with the red welt on the first day. i thought it would bother me, but it didn't. it's minor and temporary. had i not taken the shot to avoid the welt, i would have had foot pain walking around old san juan for three days. lesson learned: just take the shot... a 36 hour itchy spot is nothing.

returning symptoms — my symptoms typically return about 12-15 days after each injection. so although i'm supposed to take it once per week, i've found that the more often i take it, the weaker my immune system is (logical), the more likely i am to get a cold, and since i don't feel pain until about 2 weeks post injection, i've talked to dr L about going to twice-per-month shots. he's cool with it and it's been working better for me overall. and at $10/shot, it's nothing, cost wise.

the go-forward — so ii took me almost a year, but i finally found a safe medication that is actually working. i'm generally happy and think very little about this whole thing. i'm seeing dr L later this month and we're going to talk about my foot. it still swells and hurts where the mass/nodule is, so i may consider surgery to get rid of it. for 2013, i picked a higher-cost insurance so i'll pay less out of pocket and be covered in cases where things arise that are more of a surprise. i've learned that everything i do has a cause and an effect. i can pick a new doctor and have a new outlook on my situation. i can't take a medicine without side effects. i can make a decision but must realize there are  always consequences. i just have to pick wisely and choose with effects i want and which i don't. all-in-all, as long as there's options, that's pretty great.

until next time... and hopefully not for awhile... cg

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you know your life is a little weird when you wake up ahead of your alarm, so excited to go see your rheumatologist. #lifeisstrange

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a big FUCK YEAH for lower doses of prednisone.

so i've basically been avoiding this post. why? because there's a lot going on and yet nothing going on at the same time but for some reason there is more than enough to say.

when i went off the prednisone completely, symptoms in my right foot (mass/nodule) and right knee came back within 48 hours. i also noticed a bit of swelling in my knuckles in the evenings. enough that i decided to go back on the 5mg prednisone every day. 

when i went in for my check up, dr. d basically told me that meant the plaquenil wasn't working and i needed to try something else (i questioned this beacuse plaquenil is said to take 3-6 months to kick in and it had only been barely 3). since i am 100% against taking/trying methotrexate (i.e. cancer drug mentioned in previous posts with nasty side effects that you cannot drink while taking), he suggested sulfazalazine. sure. why not.

sulfazalazine is a huge yellow pill you take a twice a day. its an antibiotic that is mainly used to treat coilitis but for some unknown reason (seriously), it works in mild cases of ra. lovely. so i start taking this with the understanding that if i remain on it i'll have to get my blood tested once a month. ok, fine. i took the sulfazalazine for the two weeks without any trouble until...

(males/men/dad/guys/dudes: this is where you stop reading if you have issues with feminine part chit-chat)

...until i made the connection that the not-exactly-like-a-yeast-infection-infection i felt like i'd had for the same couple of weeks was probably due to the antibiotic nature of the medicine. the morning i connected the two together, i was also noticing the symptoms of a chest cold. DUH — antibiotics always give me a cold and a yeast infection, i should have realized sooner. i called dr. d and he suggested i stop taking the sulfazalazine. it's been about a week and as far as i can tell coming off this drug has fixed all the "down there" issues. 

so now what? well, to continue avoiding the methotrexate, there's really only one other option. injectables. enbrel and remicade are similar, new and highly effective drugs for ra. developed in the last ten years, they basically treat moderate to severe cases of ra with very little side effects or harm to the body. the hang up is, you basically give yourself a shot every week or two. that and they're super expensive.

at first i thought this was a really drastic approach — i'm not that sick. is this necessary? if it works will i have to do it for the rest of my life? what if they stop working and i become immune to them before i really need them? i don't have moderate or severe ra, i cried thinking about being that girl that has to give herself shots (that's hard to wrap your brain around), i don't want to spend a ton of money on this. i told dr. d i'd think about it and this is what i've come to terms with:

first, i've decided now is the time to get a second opinion. i've made an appointment with a new rheumatologist and the upmc rheumatology and autoimmune center. different practice, different doctor, different ideas. i'm not really looking for a new/mis diagnoisis. i'm pretty positive i have ra. i just want to make sure the treatment plan and approach i'm on is the correct one for me to stay healthy. whichever doctor i feel better about, i'll stick with.

secondly, i watched the video on remicade's website about giving yourself the shot. with enbrel it would be once per week, with remicade once every two. not bad. if they work, i could come off the prednisone and the plaqueil and be down to just supplements and vitamins in the pill department. i think i could see the benefits of stabbing myself with a needle if the medicine actually worked. what i understand is it's safe on the body as far as anyone can tell. where the predinsone has long term damanging effects, this does not (as far as they know). i wouldn't have to get my blood checked, eyes checked, or watch what i drink. win. win. win. win.

and last but not least, cost. from what i can tell it will cost about $70 each month out of pocket for these drugs. however, both have a program with a discount card that knocks the co-pay down to about $5-10 each month. totally doable. 

i'm going to hold off for now. dr. d wants me to come back in to start the prep work for these injectibles this week but i'm going to wait until a) i discuss with the new rheumatologist in mid-october b) i discuss with my trusted friend / ra partner in crime tara who i believe has been on them before and c) i do some more research.

so as of now, i'm feeling good and weighing my options. the awesome news is after coming off the prednisone for a few days and feeling symptoms, i decided to go back on every day but to only 2.5mg/day. dr d was happy with that. it's 50% less and i don't feel a thing. even more awesome news? i decided to try taking only 2.5mg every other day for the last week... still no symptoms! dr. d was also happy about that. a month ago i was taking 35mg/week and now i'm down to 10mg/week! excuse my french, but FUCK YEAH! part of me wonders if the plaquenil is slowly starting to work... :)

ok so now you get why i'm saying a lot is going on and yet nothing is going on. my medicine is changing. i'm playing around with new things and weighing new options. what's not going on? symptoms. i dont feel bad or sick or anything. if i have "a bad ra day" every now and then, its not because i feel pain, it's because i'm frustrated and emotionally drained thinking and talking about medication, etc. when i literally feel perfectly healthy. 

so there's the update. stay tuned...

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the best thing you can possibly do with your life is tackle the motherfucking shit out of love.

dear sugar, cheryl strayed.

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a photo i took last night from the book i'm reading. cannot not love this quote. #liveyourlife

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officially off the prednisone for 24 hours. feeling okay but feeling my knee for the first time in weeks. bummer. hopefully that'll be it.

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Hey I saw your prednisone post, I've been on and off prednisone my whole life. I don't think 5mg will do anything in terms of withdrawl symptoms. I believe when you're on high doses like 60mg to 80mg, that's when you have to worry but you should listen to your body, if you feel fuzzy the next day, then i'd take 2.5mg but I don't believe you'll need to, hope this helps!

brita, thank you! that is so good to know. i always like to kind of fact check my doctor with other people's real life experiences. and exchanges like these are exactly why i started this blog — to be able to reach out and find/give answers when i need it. hope you're well. cate.

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prednisone withdrawl?

so i got permission today from my doctor to come off the prednisone steroid to "see how i do without it." i've been on only 5mg a day for the past almost-three months. i've read a lot about how you shouldn't just stop taking prednisone as your body's glands go into shock without the help of the steroid and you can experience fatigue and other pretty awful symptoms for awhile... basically predisnone withdrawl.

that said, does anyone have advice on what i should do? doctor says just go right from 5mg to 0 tomorrow, but i'm thinking of cutting down to 2.5mg per day for the next week, and then 0 after that. keep you posted on what and how this changes things. i've been symptom free for so long i have no idea if its the prednisone or the plaquenil working, here's to hoping :)

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yoga is phases.

this month i've put a lot of thought and effort into looking at my yoga practice, taking inventory of what poses are making me feel stronger and those that i've just been pushing myself through. 

i've always been the "super flexible" one that gets cast into the "she can do any yoga pose she tries" category... well, wrong. if you know yoga well, you know that often times the most flexible students are those that have to work the hardest at backing off so we don't injure ourselves (especially our lower backs). on the other hand, we often have the continuous challenge of finding the sensation in a pose that others feel often and easily. i've gotten pretty good at the later, but to be honest, i was never one to pull back, even amid lower back pain... until now.

as a "type a" yogi, this is all easier said than done. since i've been diagnosed with ra and the pain in my hands and feet have almost ceased completely, i have made some specific alterations to my practice:

wearing rings: sometimes this is okay at night, but in the morning in the humidity of the studio, i find myself removing my rings as soon as i get to my mat. it keeps the blood from restricting and my fingers don't feel swollen.

fingertips: in poses where going up on fingertips instead of flat hands is suggested, i usually ignore and grab a block to heighten instead. although my fingers are pretty strong, its not comfortable for me, even if it may have nothing to do with ra, so i just don't do it anymore. DON'T BE SCARED TO GRAB THE BLOCK. you're not less of a yogi for doing so.

backbending: practicing with ra has made me insanely aware of how i treat my body parts, and my low back is something i've always "dipped into" due to my natural flexibility there. now not only do i notice that adding a slight backbend into my crensent lunge or warrior one causes that horrid grinding scenation in my back, but i don't even let myself take the pose to the point where i can feel pain. i just don't try. if we do three belly backbends, two camels, three bridges, and two wheels in class, i will do half of them. maybe. there is nothing wrong with sitting hips on a block... and i don't even put the block on the heighest side.

a tip for those who struggle with camel: you'll learn it's one of the most comfortable backbends to do if do it properly and push your tailbone under and forward. think length upward from pelvis to heart, not curve.

the curve is impossible to avoid in wheel, even if you can walk your feet out away from your hands and get more length on your tip toes, i still feel the pinch. i've learned the best way to practice wheel is to walk my legs out completely straight with pointed toes (fish pose legs) and think tailbone, tailbone, tailbone.

knees knees knees: just as much as i'm aware of my lower back, i am now overly aware of my knees. forward folds are no longer about how straight i can get my legs, warrior two and triangle legs can still support me and look beautiful with a slight bend. however we got the idea of that locked knees is the goal, i do not know, but i've been trying to break this habit along with express the importance of it with my students. soft joints, people, soft joints!

balancing poses: holy. lowback. pain. i've probably always had it, but never noticed it to the extent i have in the last few weeks. airplane KILLS. warrior three, unthinkable. i just busy myself with eagle or a forward fold until half moon is called, which feels good, but i do notice a bit of grinding in my low back. i don't miss having these in my practice, and i really don't miss the lingering tension in my back after practice.

all that said, i've been feeling great at practice now that i've backed off a bit. i'm also not practicing more than 3 times per week... which is fine because my schedule with teaching and going to work and having a social life just doesn't allow for more than that anyway. feeling good. lovin' life.

in chicago right now for lollapolooza. checking music festival off the list of things to do before i'm 30. boom. 

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to florida and back.

it's been awhile since i've written anything about how i'm feeling but a lot has changed. at least a lot for me.

right after i found out my blood type i went to florida for a family wedding. it was an awesome weekend, but emotional for me on the ra level. my cousin (the bride) and i shared a few airport arrival tears upon her finding out about my diagnosis. as one of the females on my dad's side with multiple autoimmunes, she understood and felt my sadness. basically, these tears officially initiated me into our private female-only family club.

the weekend got a bit more overwhelming when i noticed what was probably nodule on my back right heel/achilles tendon. it was an overwhelming feeling to look down, see one heel looking red and pretty oddly shaped while at lunch with my family on the beach. i will admit, i freaked out a bit and teared up in front of everyone. i'm not used to seeing my body just "deform" overnight. thinking back, that tendon had been bothering me the days prior — i kept circling out my ankle to loosen stiffness i'd been feeling. the nodule went away after a few days as did the stiffness in the tendon... this is just something i need to learn to expect.

that afternoon we walked along the beach for an hour and around the resort we were staying, that night at the rehearsal dinner i noticed my knees were hurting so badly i just wanted to sit down. this feeling was so similar to the way i've felt my knees hurt after i go to the mall for a few hours sometimes. suddenly i realized this was ra-related pain... that not everyone gets achy knees after they walk a few miles. i might have been experiencing these symptoms at the mall or walking around new york city for years but never placed it as anything more than tired joints — like when you're feet hurt from walking all day. the next morning, being in a pool never felt so good. aqua-therapy may be something i look into soon.. the movement without the pressure felt amazing on my knees.

my aunt, who is a wealth of information on the blood type diet, autoimmunes & all things homeopathic medicine, was at the wedding too so she talked me thru her recommendations. based on my blood type and swollen joints, she strongly recommended i go gluten (and dairy if i can manage) free. she and my uncle have ridded both genres of food from their diet and with it, my aunt's long term illnesses are under control and my uncle has stopped taking all medication for colitis.  

i decided i am blessed to not have a serious allergy to gluten or dairy and that instead of going completely free, i'd play with cutting back on most of these foods. if i want pasta or a cookie, i have it. but instead of getting a sandwich every day at lunch with tons of bread, i get a salad with more protein than i would have picked before. i've learned i like almond milk, so i've swapped my normal milk and cheerios for almond milk and chex mix (gluten free, who knew?).

being a type o blood type suggests that you eat like the first people on the planet (o blood type stands for "old"), meaning lots of veggies and meat. this shocked me, as i typically avoid a lot of meat because i thought it made me tired. having lessened the gluten in my diet for just two weeks now, i've noticed i'm less tired after i eat. it wasn't the meat after all, it was the bread.

and in agreeance with my aunt's recommendation, my joints are noticeably less swollen and achy than they were before. this could be the plaquenil starting to kick in too (let's hope!) but i will definitely give credit to feeling better since i've taken stock of my diet and slightly modified.

overall, the last three weeks i have noticed the least amount of right foot pain than ever (no swelling or bruising on the top where the mass is), my finger joints have less visual swelling, my rings all fit, and i find i'm massaging them less. my knees are fine for the most part. i find i rub them sometimes when i'm sitting but no noticeable pain on a regular basis. nothing is super stiff when i wake up and with that, i've noticed how my mood in the mornings has improved. waking up happy is a really great thing.