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