Monthly Archives: September 2012

getting crafty

i am on week 6 of a 6 week break in between my internships. it has been phenomenal! and has given me some time to ponder life, make bucket lists, lay around in my PJ’s till 3 in the afternoon, and complete projects i have been meaning to do. when K and i first moved in here nearly a year ago, i set my desk up in the mud room off of the kitchen as a study area. then, we began renting that area out as a “guest nook” to supplement our finances since internship = pay $$ to work for free.

let me tell you, being able to rent out that space was absolutely a lifesaver! however, it meant that my desk needed a new place to live. this translated to it being hastily and unceremoniously shoved into our bedroom and then piled up with random things and clothes. our bedroom door was not left open for months. things began to pile up in there. it started to look more like a storage room than a bedroom.

i came to realize that my desk was something that i no longer needed. i mean, grad school is over and frankly i never sat at my desk to study anyways, so why keep it? it was big and taking up a ton of space. plus, my plan is to travel as an occupational therapist so i need to be thinning out my possessions. i sold my beloved desk. the one that i had all the way through college. the one that i forced my ex to drive up to the bay area after i dumped him so that i could have it back. i went from this:

to this:

i needed storage! so, i got around to another project that had been on my list for some time–making a wine crate shelf. i had many ideas in mind for these, but since we are renting and i didn’t want to put any unnecessary holes in the wall that would be docked from our deposit later, i opted for a standing shelf.

i really wanted to mount them on the wall above the desk and i also considered making planter boxes. in the end i needed storage. construction was simple i just used 4 nails to join the two boxes vertically. i plan to paint the insides of the boxes a bright fun color. i love that one of the shelves is covered so that i can hide practical, but not pretty items.

it balances out the new desk set up nicely, wouldn’t you say?

 

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kale and chorizo soup

there i was, bored, hungry, and K was in class. what’s a non-cooking individual like myself to do?! well, i got creative and for once it turned out well. K loved it. it was the first time i have ever heard her exclaim “that’s fucking delicious!” after taking a bite of soup. oh snap, i must have done something right!

ingredients

  • 1 medium red onion, diced
  • 1 large potato, sliced any way you prefer
  • 2 stalks of celery, diced
  • 3 cloves of garlic, minced
  • handful of shredded red kale leaves (about 1 cup)
  • 1.5 tbs chopped parsley
  • sliced mushrooms (i used the last couple in the fridge, but i don’t think the amount matters so use as many as you like)
  • oregano
  • salt
  • dash of cayenne pepper
  • olive oil
  • 1 tbs better than boullion (chicken flavor)
  • dry/cured spanish chorizo cut into small pieces (i used a roughly 3 inch piece)
  • 4 cups of water

directions

  1. heat a large non-stick pot with olive oil over medium-low heat
  2. add in the onion, mushroom, and celery and sautee until the onion becomes transparent and the other veggies soften
  3. toss in the garlic
  4. sprinkle oregano and salt generously
  5. add the potatoes and chorizo and allow to warm up for about 5 minutes stirring frequently. the chorizo will begin to release its oils. don’t allow it to heat too much because the cured chorizo will get crunchy. think bacon bits…not what you want in soup!
  6. take a 2 cup measuring cup and fill with hot water
  7. add one tbs of better than boullion to the water in the measuring cup and stir until it dissolves then pour into pot
  8. add 2 more cups of water to pot and stir ingredients together
  9. add most of parsley
  10. bring to a simmer and then cover (i left the lid at an angle so it was mostly covered)
  11. allow soup to simmer until potatoes have softened
  12. add kale and simmer until leaves have softened
  13. serve, top each bowl with fresh parsley

serves 4-6

Enjoy!

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sometimes i get frustrated

and turn into a sarcastic, trolling 12- year old brat. take this email exchange for example. i have been trying to sell my mattress on CL for about a week. its a good quality mattress and i’m selling it for $50. it’s cheap enough for people to take a risk in buying it because buying a mattress from a stranger over the internet is risky. so far everyone has been a flake or they have asked me ridiculous questions. today, i got annoyed.

 

 

apparently she didn’t get the joke. sigh.

 

 

 

 

i apologize, but i just couldn’t resist.

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an ode to hail merry

these are fucking delicious. that’s right, i have to use bad language to describe how unbelieveably tasty they are. they are that good.

i LOVE them, and not just because they are free of everything bad. they aren’t just “good for being gluten free/vegan/etc” they are actually DELICIOUS simply because they are.

the last time K and i went to whole foods, she pointed at the hail merrys and said “more?” i said “always!” a man walking down the aisle witnessed the interaction and chuckled to himself, probably because he too knows how chocolately and rich and amazing these bad boys are.

plus, they come in other flavors. and the other desserts by this company such as the lemon or chocolate torte are equally as delicious. you should get some. 🙂

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taking inventory

it’s been just over a year since diagnosis, so i thought it would be a good time to discuss my symptoms, my treatments, and my future plans.

signs and symptoms
lhermittes–severe, diffuse tingling/pins and needles in my legs from 5/11-11/11. i still get this occasionally when i am walking, but its very mild and mostly on my right side now.

Arm pain/tingling/numbness–this started around the time that the lhermittes faded away. it was also around the time that i was trying to type my research proposal in my grad program…how timely :/ it was bad enough that i had trouble sleeping and bending my arms made the pain worse. the tops of my arms go numb as well, along with tingling in my 4th and 5th digits. i still get this, but its less intense and usually when i am very fatigued.

FATIGUE–this is probably my biggest struggle right now. i know its going to be a fatigue day when i wake up and my eyes are shaking (nystagmus) and i have an intention tremor. luckily, they both disappear after a few minutes, but its a good warning that i need to take it easy. in general, i have to take it pretty easy but i am trying very hard to push myself and build some endurance. this is one of the reasons i have birdie. in fact, the last couple of days we have gone on some epic walks and i have handled them well. MS:0 Meagan:1!

Cognitive–another big hurdle for me. my memory is TERRIBLE. its super frustrating to know that you should have remembered something, to lose things constantly, to only be able to do one thing at a time, to need to write EVERYTHING down or put it in a phone calendar, and still manage to forget half of the things you need to remember.

Clonus/spasticity–it’s mild, barely even noticeable but definitely there. just after i got my MRI’s back from the workers comp doctors (the ones that found the lesions originally), i saw my physical therapist and showed him the MRI results. he was in disbelief too and he said, “but you don’t have any spasticity, see i can’t even illicit clonus.” as he repeatedly lifted the ball of my foot to show me…and then my foot began to involuntarily beat. i did have clonus. he looked up at me, a bit surprised and a bit grim. at that time, i only had it in my right foot but now i also have it in my left. ah, sneaky progression how i loathe you!

Balance–i lose it often! prior to my diagnosis i was seeing a chiropractor who picked up on these problems before anyone else. each time i attempted the tandem romberg i would sway wildly and lose my balance and it didn’t get better over time. i notice this at key times for instance, when standing at the edge of a rocky cliff. i guess i should avoid those…

Muscle Fasciculations–i get these all the time, everyday. it started just after i was diagnosed. they are annoying and sometimes when they affect a larger muscle a limb will jerk involuntarily. they don’t hurt or cause any issues though. most MS docs will tell you that they are not related to MS but seems like every person i have talked to with MS has these.

Itching–another unproven symptom, but troublesome nonetheless. i get itching spells primarily involving my legs. the sensation is like itching mixed with being poked with something pointy. i believe that the rise in body temp after a warm shower brings on the itching. it also coincided with a flare at the time of diagnosis and has since improved.

Visual disturbances–this is a problem especially when i am fatigued. i skip lines, misread words, rearrange letters, and am noticing more and more that i need to increase the font size and brightness (thereby increasing contrast) on my computer screen when surfing the web or writing in a word document. i also have noticed that i prefer writing in blue ink because of the contrast it gives. because of these things, i hardly ever read anymore. it’s a shame, because as a kid i loved to read.

treatments

Vitamin D study–i am a study participant in a randomized control trial through UCSF that is studying the potential benefit of high dose vitamin D combined with copaxone. each night, i take a vitamin D tablet of unknown dosage (double blind) and my copaxone shot. once every few months i meet with the study coordinator to do standardized assessments and track my EDSS score (mine is currently 2.5, in case you were wondering). the study is 2 years long and includes MRI’s.

Gluten and dairy free diet–these days, food is the biggest purchase i make each month. that’s because we shop at whole paycheck (er, whole foods). still, it has been very good for me and i am happy with my choice to quit eating junk.

future plans

overall, i take very little medication and i like it that way. i am not big into committment and many of the medications that i could take to control things like the lhermittes and arm pain (which are both enough of a bother at times that i have considered it) have to be titrated up and down–i cannot miss doses or decide on my own to quit taking them. boo!!

Supplementation– i am researching now taking B 12, COQ10, cordyceps, and alpha lipoic acid and acetyl L- carnitine for fatigue and immune system function.

Accupuncture and Chinese Medicine–this has been on my list for quite some time. i am excited to make this happen, and think it could go a long way to improve my mood, fatigue and pain/symptoms. maybe even progression? who knows.

Diet–i have been thinking lately that i need to keep pushing myself forward in this regard. i know i have high levels of inflammation in my body because of my overachieving immune system. there are diets that can help, so the next thing i plan on removing from my diet is legumes.

Exercise–yesterday birdie and i were walking machines. i love the fact that i live in a city that i can complete many of my errands on foot, with my dog. very convenient! i am also taking swim lessons once a week and i love it. as soon as i am able to do the flip turn i will begin lap swimming. pilates are in the works as well. for some reason, i am struggling to build up the courage for this one.

overall, everything still works pretty well but it is disheartening to see progression. just a few months ago i was a 1 on the EDSS scale. they say that RRMS is progressive and that progression is caused by flares. i have never had an all out flare just lots of subclinical flares that cause mild issues, most are hardly noticeable. in fact, at the time of diagnosis i had 12 lesions. i was totally unaware of any of them! i think flares happen subclinically all the time. regardless, i fully intend to be as healthy as i am this year when i update on the second anniversary of my diagnosis.

birds and i on an afternoon walk with one of K’s coworker’s dogs. she is wearing a holt anti-pull headcollar (its not a muzzle)

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9/5/11

this is an email i wrote on  9/5/11. one year ago. in a few days i will have been diagnosed for a year. seems like a lifetime. 

so i guess i should begin with how a MS dx was put on the table. i have been having back and shoulder problems for almost a year and i have had tingling in my legs for about 6 months. recently, i reinjured myself at work and because i now have tingling in my hand, the docs ordered a MRI. thats when this all began. the MRI goes on at length about the multiple lesions in my cervical spine and one in my lumbar spine (“confirm MS dx clinically” “further workup advised”). i was referred to a neuro who examined me and then ordered more MRIs that included ones of my brain.

i just finished those on thursday and i am now stuck in a waiting game to find out what the neuro thinks. my uncle is a nurse practitioner in a chronic pain clinic and when he found out about what was going on he called me and wanted to know about the MRI findings. he said he expected them to find brain lesions as well. he apoligized and said he has worked with many patients with MS and given that i have multiple spinal lesions he was fairly sure i would have them in my brain as well.

i am hoping that this will be something else. even when my neuro wouldn’t speculate as to the cause of the lesions, only saying that MS was the most common reason for someone my age to have spinal cord lesions i didn’t lose hope. it was hard to hear it from my uncle, knowing that he does have a lot of experience working with patients who have MS, but i still was not thinking it could be true. however, yesterday i went to visit my mom (a critical care nurse for 30 years) and we were talking about the MRIs and i mentioned that my uncle thought they would find brain lesions. she quietly said, “i do too, honey.” she averted her eyes. at the time we were eating brunch at a restaurant and i instantly lost my appetite. it was SO hard to hear that from my mom.

last week was probably one of the hardest ones of my life. in addition to going through marathons of MRI’s, i was basically ambushed by the drs in the occupational health clinic at work (original MRI was through workers comp). i had two doctors going on at length about how my symptoms were from MS, asking me questions about how i felt, telling me they were going to drop me as a patient because i have MS (even though my neuro has not even confirmed this yet…how do they know? i guess MS patients cannot also have a work-related injury??). i felt completely demoralized after leaving the office. an hour of two doctors interrogating me, teaming up and working off each other to make me feel as awful as they possibly could about my future. i went back up to my unit and cried in the break room…and i am NOT a “crier.” i almost never cry.

if i am really honest with myself then i have to admit that i have had some vague symptoms for quite some time. i just thought that was me. i was seeing a chiropracter and he discovered that i have a positive tandem romberg test (balance issues). at the time, he was trying to convince me that i had this because of a gluten intolerance. but i suppose i can now safely attribute that to the spinal lesions. i have always blamed the chiro for the tingling i feel in my legs. he adjusted me and then later that afternoon i first felt tingling in my legs. now i wonder if the spinal lesions were the culprit and it was just coincidence that it started after the chiro session.

the neuro cautioned me against hot baths, etc. and in direct defiance of what she said, after my appointment i came home and immediately ran a hot bath. when i got out i was shaky and didn’t feel well. same thing happened to me this weekend. i went up to the mountains and had to shut the a/c off when i was driving up a steep incline. by the time i got to the top i was shaky again, and by the end of the day i was completely and totally exhausted. that was yesterday. i slept about 10 hours last night and have done nothing but veg on the couch all day and drink 4 cups of caffienated tea and i am still ready to fall asleep. i also have been having such a hard time with memory. if i answer the phone at work and the caller gives me thier name, by the time they tell me who they would like to talk to i have forgotten it. maybe its just stress from everything going on, but it seems like it gets worse everyday.

i am meeting with the neuro on thursday and i feel like the closer it gets, the harder it is to think about anything else. anytime i am quiet, my mind wanders to MS. the countdown is agonizing. gah! my final year of school…seriously?!

anyways, sorry for going on forever…i’m just trying to manage all of this and get through the week without falling apart.

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