a new treatment takes guts

i started a treatment for my multiple sclerosis in january, and it wasn't working. actually tecfidera pretty much never worked for me as i had been having symptoms since march. not just some fleeting sensations. it was intense pain that lasted for 8 to 24 hours. other times it was burning sensations that traveled up and down my arms and neck. this pain and burning was so severe i could hardly speak. i had two MRIs in the spring that showed nothing new. but then my most recent in july showed all the activity i was feeling.

so 6 months after i stopped chemo i was in the same place i was when i started it a year and a half ago. talk about rain on a parade. however there was no time for a pity party. my raging lesions required action.

my first inclination was to start chemotherapy again. it stopped the lesions in their tracks the last time, and i pretty much felt well during the treatments too. the thing about chemo as a treatment for autoimmune disease is that you can only be treated this way for 3 years...ever. i've already used 1 year. and since we know it works i want to have it in my back pocket for emergencies.

my other treatment options were tysabri, rituxan, and gilenya. all pose risks. gilenya may cause problems with the heart. i do experience heart palpitations often, so my neuro and i were quite weary of that one. tysabri and rituxan pose risk of PML, and since i've tested positive for the JC virus both had me quite nervous. the risk of PML is higher with tysabri so i focused in on rituxan.

additional information that helped sway my decision was the fact that rituxan is used to treat other autoimmune diseases like RA and Lupus. ding, ding, ding! i feel in my heart that whatever is going on with me is not just MS. it's lupus too. i think that is why a drug used mostly for MS didn't work for me.

so i went with rituxan despite the risk. rituxan is one infusion that lasts 9-18 months. it's a biological agent that wipes out your b-cells which is part of your immune response. and since it is not a chemical, you can use rituxan indefinitely as long as it is working for you. not sure some of the people in my support system agreed with my decision. they thought the risk too great. but it's a risk to do nothing too.

the truth is i've never been one to shy away from anything. be it a challenge, an adventure, a dare. in fact if you tell me i can't do something or i shouldn't do something, chances are i will do it anyway. it's not in order to prove someone wrong. more to prove something to myself. the minute i believe there is something out there that can stop me, i think that's when it starts to become the truth.

it was a leap of faith, but i took it.

it's been almost a month now, and i feel pretty darn good. the pain and burning has stopped. additionally, i'm not dealing with any side-effects. i'm looking forward to recovering from this relapse and finally getting back to yoga and other exercise.

feel free to email me if you have questions about rituxan or MS. i'm happy to share :)

ms cannot stop me ~ j

beautifully thymed sweet potatoes

i think of my life 10 years ago. a life with no sweet potatoes. my mom would make them only at the holidays, and since they looked exactly like the pureed squash i steered clear. even topped with sugar, butter, and marshmallows i wouldn't try them.

perhaps the real issue was that they only made an appearance on the thanksgiving table. they were so foreign to me. and hey, i didn't even know what they looked like raw. see, so mysterious! plus back then the stuffing had my eye :)

i didn't know then that i was passing up on all sorts of healthy goodness! these babies are packed with vitamin A. some vitamin c, manganese, potassium (which i always seem to be low on), and of course fiber. when you nosh on these though you should remember that the vitamin A requires fats in order to be absorbed into the body. so don't forget to add a bit of extra virgin olive oil or coconut oil. can't go wrong with that!

now-a-days you won't find me going a week without these gems. soups, stews, juices, curries, mashed, baked, fried...and roasted. when you chop em up and roast em it's like the perfect combination between fried and baked. a nice little toasty-crispy exterior and a creamy-sweet interior. add some fresh thyme and salt and you are golden.

Recipe

• 2 large sweet potatoes
• 2 Tbsp extra virgin olive oil
• 2 Tbsp fresh thyme leaves
• 1 tsp sea salt
• 1/2 tsp fresh ground pepper

1. preheat oven to 350.
2. peel then cut sweet potatoes into 1 inch cubes, wedges or whatever. just be sure the pieces are close to the same size.
3. add the sweet potatoes and the rest of the ingredients to a 9x13 glass dish. toss to coat.
4. roast in the 350 oven for 20 minutes. 
5. after 20 minutes increase the oven temp to 425. flip the sweet potatoes and roast for another 20 minutes.

My kids add a bit of sugar. i sometimes add a little bit more salt or some gomasio. they are a good side for anything, especially thanksgiving dinner. there is perhaps already too much mashed stuff at that table anyway.

healthy eating ~ j

my MS resolutions

well it's been months since my last post. i've been out of sorts regarding life, health, treatments, etc. doing my best to eat right and i continue to educate myself on ms and lupus. however i do feel like i've been chasing a ghost. the ghost of who i once was. a woman who laughed hard, had great adventures, and always had answers and made decisions. i've hardly been that woman lately.

but... my recent MRI brings great news! no new lesions and no active lesions. so the plan is to stop the monthly chemo treatments i've been enduring for 10 months and move forward with tecfidera.  it's the newest drug for ms on the market. it can't possibly be the roller coaster ride that chemo was, but i've got to be ready.

i plan to take control of my MS in 2014. it's possible! making smart food choices and getting my body strong can help with side effects from drugs and keep the body/mind strong enough if relapses do occur. my resolutions this year reflect as such.

resolution #1 - diet
while i've been following a vegan diet for over 2 years, i will admit to you that on certain occasions i have let certain items slide. a baked item, a sprinkle of cheese, cream in my coffee when there was no alternative. i've not slipped on meat but i have on some dairy. but some of the resources i've been reading lately discuss a possible link between dairy and ms as well as some other autoimmune diseases. so truly, is it worth it to me? no! so i am done with dairy forever.  if i want a baked item i will need to make it myself. if there is nothing vegan on the menu, i will leave. no non-dairy creamer...my coffee will remain black.

something else i've been reading in this book called Overcoming Multiple Sclerosis is the part of saturated fats. there is evidence that a diet high in saturated fats can lead to more relapses and more disability over time. well there is just no room for that in my book. so it's time to limit saturated fats to almost none. i've never been one to count calories, but i'm going to have to start counting saturated fats. no chips and fried foods. they are not worth it.

another bit of information from that book regarding diet has to do with omega-3 fatty acids. they play a role in the production and flexibility of myelin. that's good stuff. many people see fish as the best way to get omega 3s. a fish oil supplement is taken by many. as a vegan i seek omega-3s in flax seeds and chia seeds. i've been taking this Udo's Oil 3-6-9 blend daily which i think fantastic! i just blend it in my smoothie or drizzle on salad or toast.

resolution #2 - meditation & faith
i do meditate now but not regularly and not nearly enough. and i'm not even good at it yet. i still require a guided meditation on youtube or on one of my apps. though i do feel it helps, i don't feel like i'm getting the mind/body connection i should. i've not leaned to quiet my mind. in fact when i try to quiet my mind i feel it gets louder.

i need to follow through with a meditation regimen. i know it will lead me to be strong in mind, be light when stressed, and be faithful in my journey. this is me. i am happy with me, content with the journey.

resolution #3 - strong body
i know everyone says exercise as a resolution. so cliche! but i must be here. i've been going through a new phase mentally regarding my ms. i've been thinking about how tired i am fighting ms and how i will have to fight it for the rest of my life. it's overwhelming to think about, and i can see how that thought can send an ms fighter down a depressed road. in particular i've been thinking of all the things i used to do like kayak, run, hike, snorkel and how someday i may not be physically capable of those things anymore. there may be a time when i can no longer walk. so depressing i know!

however, none of this has happened to me yet. so what the blue blazes am i upset about and what am i waiting for? my body is still capable! my body is still strong! i need to feel joy everyday i wake up to that fact. and i need to move. exercise for strength and exercise until it hurts. then i'll know that when my body really does hurt i will be strong enough to still move and i will be resilient enough to be able to endure it.

resolution #4 - gratitude
i've chosen to start a gratitude journal. start documenting both the big and little thankfuls. remind myself everyday why i am grateful. these things need to be in the now. what am i grateful for now? what adds to my happiness now? i know this daily check in with myself will help keep my outlook positive, never negative! i can't allow myself to think that the future looks dim. how can it when the present is so amazing?!

my gratitudes so far this year include my daughter's fearlessness when faced with a tooth being pulled, my kid's great attitude towards meatless mondays, and my new connections with ms-ers through instagram.

2014 is going to be amazing. i have confidence that my resolutions will get me through the year relapse-free and i know they will help me become just a little bit better of a person.

stay strong - j

fruit rules!

fruit rules! i mean it really rocks! who doesn't love a big juicy ripe peach or a perfectly crisp apple? fruit is considered by many to be the most perfect food you can eat. i consider all fruits to be superior and that means it's a major part of my diet.  however, i do have a few rules i try to follow when it comes to consuming fruit.

rule #1 - choose only organic

i go where i need to go to get great organic fruit.  typically during the summer and fall i can go to my local farm stand or farmers markets. during other times of the year i will go to Whole Foods. choose the fruits that are most in season so as not to spend a fortune. off-season organic fruits can be found in the frozen section as well, which you can use in smoothies :)

organic is not something i am willing to waver on. as someone who battles autoimmune diseases, i know that any chemicals entering my body pose a threat to my already confused and already compromised immune system.  sometimes i wonder if all this factory farming, pesticide, gmo BS is what triggered this autoimmune response in my body in the first place. our world and this environment is chemical laden...control what you can!

rule #2 - wash everything

all fruit, even organic should take a little shower before it enters your body. this is easy and does not take tons of time so do not skip this step! a quick rinse helps but i think is not enough. the surface of your fruit may not have pesticides but with all produce you run this risk of bacteria or fungal growth especially if the fruit has traveled far to get to you. the very best process you can use to rid your veggies of unwanted germs is to fill up your sink or a large bowl with water and a bit of apple cider vinegar. then simply let your fruits and veggies soak for five minutes.

rule #3 - eat fruit first

believe it or not it matters when you eat fruit. a piece of fruit travels swiftly through your system, taking only 20-30 minutes to digest. other foods like starches and proteins will take quite a bit more time. if you are combining fruit with other types of foods or you already have these other foods in your gut digesting, fruit can get stuck in the mix. when fruit is stuck it can begin to ferment before it's through your system causing gas and bloating and just an all around yucky tummy! to avoid turmoil like this in your gut you should plan to eat fruit on an empty stomach allowing 30 minutes for digestion before eating anything else. most days i tend to eat lots of fruit for breakfast and snacks up to lunch and then avoid it the rest of the day.

this idea to take care about when you eat fruit is for the sake of gut function. you want your foods all day to be flowing smoothly. when it's not flowing smoothly in your gut your body must spend additional energy aiding in digestion. additionally, when you really disregard food order and food combining you run the risk of gut disfunction and gut disfunction can and will eventually affect your immunity. this girl does not want that!

eat healthy and be well! ~ j

a visit to maine with a massaged kale salad

packed up the kids and headed to maine for the week of the fourth of july. we love it up there. to say the beach is peaceful is an extreme understatement. it's a private beach so no hoards of people. and it's in a bay so no giant waves. i can sit and relax since i don't have to worry about the kids getting lost or being knocked over by a rogue wave. ah....maine.

pristine!

the only drawback is dealing with food. the fridge is stocked but by my mom. she is not a vegan. and my sisters, their husbands, all the kids, they are not vegans either. so me being the only vegan, planning and prep is required.

these dunes are magical!

this time i brought my blender along with frozen fruits and spinach. that took care of my breakfasts. but for lunch and dinner i need salad! i knew there would be no room for all my veggies so i made a salad ahead of time. i managed to make the perfect pack-away salad!

this salad involves kale. i love kale! with all the vitamins and minerals inside those lovely leaves who wouldn't? it's also known to have anticancer and anti-inflammatory properties! bring on the kale!

me and my salad :)

i made this salad on a monday and it was still good on wednesday. i enjoyed it in maine on the deck while we waited for the sun to come out. when it finally came out it was hot and lovely. perfect weather for a dip in the cold gulf of maine waters.

massaged kale salad

• 1 bunch of kale either green or purple
• 2 tbsp olive oil
• 1 tsp of salt
• 1 avocado cubed
• 1 red bell pepper chopped
• 1/2 red onion sliced thin
• 2 tbsp pumpkin seeds

1. de-stem the kale. rinse well and spin dry in a salad spinner.
2. add kale, olive oil and salt to a salad bowl. using your hands, tear into bite size pieces and massage. continue to massage for 15 minutes. the kale will wilt down considerably.
3. add the avocado, bell pepper, onion, and pumpkin seeds. toss and serve. you can serve with a bit of balsamic vinegar if desired.

tips for an enjoyable MRI

in the whirlwind of illness leading up to my diagnosis and treatment of ms, i had four MRIs. then just

two weeks ago i had a fifth. results were great this past time :) but the point i'm getting to is that when it comes to MRIs, i'm a pro.

for many, MRIs are nerve-wracking or uncomfortable. and for others, especially those with claustrophobia, MRIs can be frightful. i'd like to reach out to anybody in the population with an upcoming MRI to let them know it's not as dreadful as they may think. here are my tips to an enjoyable MRI.

schedule at a relaxing time

if you have a choice as to when you have your MRI, schedule it at your most relaxing time of day. this is, of course, person specific. my choice is first thing in the morning when the day has not had time to put me in a lousy frame of mind. nothing has happened. no one has approached me with a deadline or eaten my lunch out of the fridge. this last MRI i was able to schedule on sunday which was even more amazing because there was no traffic and very little people crowding the hospital.

the best time for you may be as an escape on your lunch break or later on toward dinner. you schedule for you.

wear the right outfit

this is no joke. wear your favorite and most snuggly, comfy sweats. i also recommend socks and sneaks. no zippers or snaps. and if you are a woman, no hooks and underwires in your bra. so i suggest a sports bra. wearing an outfit with no metal allows you the comfort of wearing your own clothes and not a hospital gown. who designed those crazy things anyways?? i mean they fit no one.

plan to go alone

here's the thing. it may sound like a good idea to have a spouse, family member, friend with you, especially if you are scared of what this MRI might mean. however, you will probably not be getting results right away. generally you hit your doctor appointment a day or two later to discuss. so you won't need a friend for support.

bringing someone along only has the potential to make this MRI more difficult. on the ride in you have to talk to this person. you will likely discuss the possibility of poor results. this can only add stress to the task currently at hand. additionally, an MRI can take a while. perhaps you will feel bad that your support person is now out in the waiting area alone. that too can stress you out and make you feel bad.

listen to a soundtrack

on your way to your MRI listen to your kind of music. music that makes you happy, content, or relaxed. if possible listen to your iTunes or Pandora. what you don't want is talk or news radio. the woes of the world do not need to be on your plate at this particular time on this particular day.

prep for comfort

once in the MRI room, you want to take measures to ensure your comfort for the extent of the MRI. earplugs are given and you should be sure they are snug and therefore will be effective. some MRI facilities have padded headphones. if this is the case, feel free to request a particular kind of music.

if you are one who suffers from claustrophobia you may want to consider an eyemask of sorts. if you can't see the confines of the MRI machine you perhaps won't be affected by your fear. some eyemasks even have aromatherapy properties which can add another layer to your relaxation.

one last issue to consider is the temperature of the MRI room. typically it's cold and can be too cold while laying still for over an hour. request a blanket to be safe. you will not regret it.

meditate to relax

the first part of your meditation is to do a body scan. think of every part of your body from your head to your toes and make sure to relax each body part. pay close attention to the area of interest as it is important to keep that area from moving during the MRI. if you are carrying tension in that area and you don't realize it, you may find you need to move at an inopportune time.

the second part of your meditation requires you to go to a happy place. envision a place in this world that makes you incredibly happy. for best results this should be a place you have actually been to. try to choose a place where things are happening and there are many things to see. remember this vision needs to last for your entire MRI. it can't just be one place with one scene.

my happy place is catalina island off the coast of southern california. i'm snorkeling...weightless...floating on the top of the sea...drifting in and out of the kelp beds...oodles of bait fish are passing by...maybe bat rays are flying through the water...a seal swimming towards me...  as you can see this vision can go on for some time :)

putting some thought into your MRI ahead of time can make all the difference. you may find that you even enjoy this time to yourself!

~j

3 ways the internet helped me cope

have you ever been to your pcp for a routine physical, had some blood work done or some other test, then received the results back from your doctor in jargon that you don't understand? generally the results are negative so you don't even need to know what the test was for. your hermatacrit is fine, your compliment levels are within range. "great see you in a year!"

when my symptoms returned after the birth of my daughter, i had to start going to my doctors more often. i went through tests after tests.  the results were read to me in doctor mumbo jumbo, lingo that i did not understand. i felt confused and very, very alone.

then something special happened. medicine and healthcare decided to embrace the internet! here are 3 wonderful ways the internet helped me learn about my disease and ultimately cope with my situation.

medical websites

two of my favorites are webmd and mayoclinic. check it out. go ahead. type in the flu or something. it will tell you whether you are at risk, what the symptoms are, how to get diagnosed, flu shots, etc. webmd even tells you how to cope with the flu.

so i research things about lupus and now ms all the time. if i have puffy eyelids i check a site to see if it may be a symptom of lupus or ms. if not then maybe i will call to discuss with my doctor but i check myself first. that's right, i'm in charge here!

once i was also diagnosed with ms, many different medications were on the table as options. all the options had side effects so i needed to be informed. these medical websites helped me with research.  i'm pretty sure if i was unable to do my own research i would have just gone ahead with what the doctor seemed most psyched about. but only i really knew the full complexity of my clinical history. after my research and after the doctors answered my questions, i decided on a different route.

patient portals

maybe 2 or 3 years ago the hospital i go to moved to an electronic system of delivering patient information. they call it a portal or gateway. i can log in and see all my upcoming appointments, doctor information, and test results. i get alerts via email when test results are in. additionally, i can contact my doctor through the portal in a sort of email type way.

essentially i can email my doctor!?! i don't have to go to see my doctor to discuss issues that arise. amazing!

the test results portion of my portal has been especially informative. not only do i get results to tests but i get to see the range the results should fall in. sometimes i might be in range but close to being out of range (which i think is important to know). also test results over time can help you see what your baseline is.

the portal i have has an amazing feature that i would like to mention. next to the data from each test result is an icon that allows you to find out more about the test and what it means. because of this feature i really know how lupus and ms are affecting me. knowing absolutely as much as you can about your disease and yourself helps you to discuss your treatment and care with your provider. i have found this so empowering. truly it has helped me regain my confidence, get back out there, and fight the good fight!

apps

they have apps in the field of medicine that can help with a scary diagnosis, help pin point medical issues, or help you chart your symptoms. there are a couple that i have become familiar with.

pain coach screen

the pain coach is an app i have used. it is created by webmd. you can track your levels of pain from unbearable to great. add which symptoms you are experiencing on individual days. you can add items you think are triggering or exacerbating your symptoms. over time you can see if there is a correlation or not. you can add what your treatments are. it's a great way to keep track of your medications too especially ones you have to take multiple times a day. i will tell you that it was this app that helped me pinpoint my nerve symptoms. ultimately this led to my ms diagnosis.

the multiple sclerosis self-care manager is another i have on my iPhone. i'll admit i don't use it as much as the other app i mentioned above but there are several great features. the self monitoring feature will help you keep track of weight, bp, and glucose. i can think of other "vitals" you could self monitor and track here but those are the ones listed. there is a place to keep track of lab results which i think is important if you don't have a portal (as mentioned above) for your information. there is also a place to list your medications as well as list which ones your are allergic to. the most important feature on this app i think, is the side effects log. it's important to be able to distinguish between symptoms of your disease and side effects of your medication or treatment.

if you are fighting a disease, you should be sure to use all the knowledge and information that is available to you. it will help you cope, move forward, and perhaps find new hope.

be strong - j