month one. is done.

saw the clinical researcher yesterday.

showed him the photo of the massive reaction my bod had on Tuesday night.  still there.  but getting better with some numbness on top.

five-inch hot red raised welt.  with tiny raised bumps sprinkled across my skin like tiny stars.

ouch.  that one hurt!

what am I putting in my body?

my thoughts spiraled as I eyed the dangling welts from the last two weeks.

what am I doing to my body??

lots to consider.  pros/cons.  ifs.  buts.  whats??

bit too much for this girl.  but at the moment, I’m appreciating the fewer shots.  giving the dailies up for the day after joint pain.  and massive red welts.  huh.

we’ll see what and how I feel the next time I put on a bikini.

and watch my brain flash by in black ‘n white images after my next MRI.

and work my body out.

MS is kinda sucky.

but certainly the awakening I am awaiting.

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week one. done.

week one on Copaxone 40mg/3x/week is DONE.

and all I can say is, I’m completely…no, utterly sold on the new freedom 3x a week is bringing.  and I just feel better all the way around.

so much freedom, the hub and I are considering doggy #2.  (we’re crazy, I know.  but no babies, so fur babies are a good replacement.)  this guy is older – ten – and needs a home.  we’ll see what doggy #1 has to say about this.  she’s got the floor on this one!

back to the clinical trial…

other than my regular nasty red welts that take 48+ hours to go away.  nothing is different.  well, the only thing that’s new is some joint pain day following injection.  related?  don’t know, but keeping tracking track of everything in my Teva diary.

that’s the latest scoop from my neck of the MS world.  pretty darn grateful.

what’s new with you?  do tell.  😉

xo

trial run.

so, it’s been confirmed:  I’m officially participating in a Teva clinical trial to play with the new three times a week therapy that is moving toward FDA approval in approximately one year.  the new 40mg syringes are being compared to the existing once a day 20mg therapy…so I could have been selected for what I’m already on…figured it was worth a try!

and finally yesterday, I found out I was randomized for the 40mg/3x/week!  super excited!  four days a week I do not have to experience the pain of an injection – yahoo!!

cool factor>>while I really wanted to give the 40mg a try, I knew I could not control the outcome….so I gave the decision up to the Universe…un-gripping my attachment to the outcome…and look what happened!  note to self:  do that often.

keep y’all posted on how it goes.  I kinda butchered my first shot yesterday @ the doc’s office, but the clinical researcher said it looked like I got most of it in…as I watched with terror as about half of the liquid spilled out on the table.  I blame the new AutoJect 2 pen I received.  sure.  no user error involved.  nope.  😉

I am setting the intention that this journey to be less exciting, less painful, and more freeing than my last adventures in learning how to self-administer injections.  🙂

xo

ps.  I have been posting a daily What Went Well (WWW) on FB these days a la Positive Psychology style.  wheeee! – it’s been so fun…and certainly helps keep my positive mojo flowing.  been thinking I should start a separate blog stream for my daily WWWs.  huh.  I’m copying them all into my daily Morning Pages.  maybe something I will focus on for the writing class I just began on Tuesday…(I always gotta have something to relieve the work stress.)

what provides you relief from the daily life, work, family, relationship stressors out in the world?  share below!  xo

39/50. playing with needles?

11 blog posts to go in order to hit my 50 in 30 days.

a couple waiting patiently.  have already drafted 50/50.  so far it’s my favorite.  expect a few more snips of fiction.

but here’s a snippet of MS reality.  one that I would not classify as play time.

~

argh!!  how I hate my daily injections!

my back side is spotted and lumpy.  never know which injection is going to hurt.  1/10 I don’t even feel.  the other 9 burn and sting like a wasp stuck under my skin.  sometimes a big wasp.  sometimes a baby wasp.  they are all different.

but as I have mentioned previously, my hub keeps reminding me, better there than on your brain.

that is what I force myself to remember every time I release the AutoJect, which rapid fires 20 mg of Copaxone under my skin.

injecting in my stomach the last few nights.  much easier there.  stopped injecting in my arms.  as the Copaxone started eating away at my muscle tissue.  also scratched the legs for the same reason.  I still have a 1.5 inch divot on my right thigh.

rookie mistake:  pushing too hard into the flesh with the AutoJect.  for you newbies out there, don’t do that!

so now, I just keep track of the shots on my back side by the lumps that are still red.  don’t punch there.  or there.

Friday night I skipped.  freedom!

but then I worry.

I know my WBC count is up, if my swollen lymph nodes are any indication.

what if a few stray WBCs get through to my brain and start munching again?

huh.

freaky!

but a bit of a reality.  so I keep injecting.

so grateful that is an option for me.  despite the fact that it costs my insurance company $4300.

per month!

can’t wait until BG-12 gets FDA approval!  it will be just as costly, I suspect, but without the literal physical sting.

check out a NYTimes article on BG-12…

BG-12 shows promise!

big ps.  on another note, I get so tired bored reading that MS is a progressive degenerative disease.

it doesn’t feel progressive or degenerative to me!  most days.  😉

in fact, MS released me from myself, which feels more restorative than degenerative.

maybe that is the progressive part of its nature.

xo

12/50: unfortunately. fortunately.

unfortunately, I have MS.

fortunately, MS reset me!

unfortunately, I have a daily reminder that I have MS.

fortunately, my daily injections are helping!

unfortunately, I could end up in a wheelchair.

fortunately, that hasn’t happened, nor will it!

unfortunately, the hub and I have opted not to have kids.

fortunately, we have tons of love to share with other kiddies!

unfortunately, there is not enough time in each day to do everything.

fortunately, I can choose what to do and not do!

unfortunately, I don’t know what’s next.

fortunately, neither does anyone else!

what’s your unfortunate/fortunate dichotomy?

everyone’s got one.

do tell… 🙂

xox

50 posts in 30 days: 1/50, insurance blues and gratitude, word count 300

the hub and I sat down tonight to pour through his company health insurance plan options.

it’s open enrollment time for both our companies.

stresses me out.

how lucky are we??  I have insurance.  he has insurance.  we all have insurance.

and now we are considering dropping mine.

which plan do we choose?  what if we don’t choose wisely?  and how frustrating will it be to switch my speciality prescription over to his plan?  probably very.

whatever.  I can deal with that.

this is what really weighs my brain down when I start looking at everything I receive through my insurance:  what do MS peeps do when they don’t have insurance???  I know one answer, they call the MS Society.

but it still torques my brain how good and how messed up our country is when it comes to the good of the people.

Copaxone is $48,000/year.

I currently pay $240/year.  supplies are free.

a brain MRI in the OC costs $3300.  just for the brain.

I coughed up $330 for mine.

$1500 for bits and pieces of the spine.

forget about infusions and hospital stays.   luckily have avoided both.

doctor visit after doctor visit.

prism lenses and eye patches.

therapy.

acupuncture.  still haven’t tried that yet.

nutrition analysis.  coming up next!

and the MonSter blood work to rule everything else out.  until something else shows up.

turns out MS is one flippin’ expensive disease.

I want to help.  but then don’t know what to do.  or how I can make a difference.  what can I do???

Gandhi said to be the change I want to see in the world.

need some time to meditate.

and figure out what Jillie, my fiction MS traveler, is going to do when her health insurance gets dropped.

that may point me in the right direction…

xo

a pain in the neck. not!

neuro visit #4… for my cervical spinal cord MRI results today.

a slew of thoughts, emotions, and feelings always descend any time the MS topic is on the table. especially when there is a professional at the helm. and a novice researcher on the poop deck. (that would be me, btw.)

with this MRI…I can officially say to my last two neuros, “see, look right there, I told you so...!” if they are even interested. Gertrude was proud. ha!

so…turns out, I have a handful of inactive (yeah!) lesions on my spinal cord in this area. between C4-6 and then a smattering around my Thoracic spinal cord.

oh, and then a few on my brain stem.

uh huh. the part of the brain that mostly regulates all autonomic body functions. huh. fantastic.

eeek. how freaky is that? that is what mostly threw me for a loop today.

but, now I know why I have been having so many strange sensations and other bizarre things show up over the last three years. it’s right there. in black and white.

get this>;>;>;I even have had olfactory issues as a result of the brain stem lesions. things don’t smell or taste like I know they should smell. weird. that showed up in 2006. crazy.

my hub has to be so tired of me asking him if what I’m drinking or eating tastes like formaldehyde. in his opinion. huh. maybe that’s how I lost eight pounds over the last ten months?! nothing tastes good anymore! (don’t worry, I have been working on gaining some weight back – and I’m up four pounds now. and stopping here. 😉

also got the blood test results from the 27 vials of blood drawn in April…or was it 28?

results in: I officially have MS. and that’s it.

nothing else is wrong with me. I don’t have lead, arsenic, or mercury poisoning. or an anti-coagulant issue. or LUPUS. or HIV. or any other auto-immune disorder known to woman. I’m not deficient in a variety of vitamins. my glucose is not out of whack. nor do I have ALS. everything is within ‘range.’ and…my WBC count seems to be settling down – that is so GOOD! my lymph nodes are no longer the size of marbles. ha!

all of the above…a huge YEAH!

so, all I have is MS. that is SO cool. I’ll take it. back in 2005, MS was the optimal disease on the table. so that’s what I got. phew!

(sidebar>;>;careful for what you hope and wish will happen to you. it might just happen.)

today was a great day. it really was.

every day matters. pay attention to one’s thoughts. and, take care of you!! be kind to your body and soul. you are the only one in control of that. 🙂

xo

ps. the doc said that after I have my brain MRI in September…and after BG12 has been approved by the FDA…and out in the market for six months…he will switch me to the oral disease modifying drug if I want. LOVE it! the daily injections are wreaking havoc on my body (but I don’t care…uh huh. right.) he said I’ll be in line behind 3,000,000 other people. in the world.

pps. have a GREAT weekend. the hub and I are celebrating our seven-year wedding anniversary tomorrow night! love it. love him. love us!

hello late 30s…

or am I already there!?  😉

I think I officially grew up this last year.  well, maybe.  😉  let’s face it, I have been on this path of self-discovery since my 20s.  huge progress in 2011.  my friends who are older…and also introvert empaths…say life just keeps getting better and easier as we unravel, discover, and accept what is.  thank goodness!

since my birthday falls on tax day, we are celebrating early this weekend.  while I’m still 37.  time to say good-bye to the year when MS hopped on for a ride.

long sidebar on that topic>>>had 19 vials of blood drawn yesterday.  yikes!  that was a lot of blood.  my new doc is awesome, but I’m eager for a break from medical appointments.  period.  MRI of my cervical spine is Monday.  legs have been buzzing non-stop the last three days.  interesting.  did some research Thursday night, and I’m now curious if some of the symptoms I’m experiencing might instead be Copaxone side effects.  buzzing is def not.  but muscle and joint pain may be.  my left shoulder hurt so much on Thursday night.  it felt like someone had stabbed me in the back.  ha!  though muscle pain is def on the MS list.  not sure about joint pain.  my BP has also been high the last two months.  also a side effect of the big C.  that’s all I got on this topic!  I’m ready for regular life to resume.

so back to celebration!!  last night, my hub booked us at our favorite ambiance restaurant – La Cave – where food is wheeled out to you.  no menus.  steak, seafood, salad, and a twice baked or regular baked potato.  great martinis.  think circa 1960s Dean-o vibe.  this restaurant has been in Costa Mesa for almost 50 years – and in the most obscure location.  it’s downstairs from a giant Blockbuster.  no windows.  ancient elevator.  red accented lights.  brick walls.  cool staff.  my hub said that it has our kind of peeps.  I love it!  thanks baby!!

then tonight, we are hanging with a small group of friends.  at Silky’s.  our favorite local Irish pub.  I’ll have my photo taken with Silky the horse.   can’t wait!

what happened to you this week?  anything good?  love to hear!

xo

um. yeah.

I’m back at work.

wowzer.

yesterday started out well.  lots of love from my work peeps.  all good.  today was better.  my confidence returned.  yesterday, I was a bit nerve-y.

but, it’s exhausting.  I could not stop yawning in an IT meeting this afternoon!  I felt so bad.  and I have been sleeping in 45 mins. longer than I used to.  no wonder I would inject my body with 20 ounces of Startbucks and a Redbull by 11AM in the old days.  yet still barely made it through the day!

I was sitting in my office this afternoon working on a quarterly report.  pause.

and look over at the blown up deconstructed daily calendar pages from April 19, 2011 Feb. 21- 25, 2011, of The Arnolfini Marriage that I have taped to the wall right by my desktop.  (that is the painting that allowed me to pass my AP Art History test in high school.  the painting still fascinates me.  even though I don’t find it particularly attractive.)

I digress.

a wave of surreal-ness washes over me at that exact moment.

I never left.  did I?  maybe the last eight months was just a dream.

or maybe I’m dreaming now – ha!

enough about work!

so, I saw my brain on Monday at my new neurologist’s office.  um. yeah.   now, that was SURREAL.  (yes, I’m on my third neurologist.)

another wowzer.

this doc is good!  he spent over an hour with me.  listened actively.  ran more tests than the last two.  and has ordered additional blood tests (27 vials!) to rule other things out that can mimic MS.

how much do I wish that might be the case!  or do I?

so I had nine vials drawn on Tuesday.  more (as in 18) on Friday the 13th.  as they wouldn’t do them all at once.   the girl was good – no bruising, and fast.  I’m also going in for another MRI.  of my NECK.  the one part of my central nervous system that the last two neurologists said that they didn’t need to see up close, despite the fact that I was exhibiting symptoms of a cervical spinal cord lesion.  huh.  that never sat well with me.

the new doc said he’s mostly sure that I’m presenting MS based on my brain MRI and progression of symptoms.  but he wants to rule out everything else.  he showed me the MRI from 2005 MRI and how the two tiny spots that were lit up back then…have grown.  and that I have Dawson’s fingers fingering my brain.  lovely.  not.  but awesome; he seems genuinely interested in my overall well-being.

and to top it off…he says that Copaxone is the most effective treatment from his experience!  walking through his office that sits on top of the palm trees swaying over Newport Bay (or is it Balboa?), I would say he’s seen a lot of  MS peeps.

so, I’m doing my daily shot again.  I was only doing it six-ish days a week.  it gets old, yes.  but if I can battle my lesions with my lower stress level, diet, and self care.  and the nasty nightly injection.  I’ll do it.  🙂

I’m happy.  my hub is happy.  my dog…may not be as happy.  😉

xo

from page to post…re-blog from October 2011: solo second shot…

…husband stuck at work late tonight…so I was on my own.

nothing happened.  other than I gave myself a shot.

the red welt appeared…man, it still stings.  but, I survived.  again.

huh.

that’s the latest.  pretty anti-climactic, wouldn’t you agree?

sometimes anti-climactic can be good.

found out yesterday that if a neurologist identifies twisted blood vessels in your neck and you have MS – an angioplasty might be the solution:  they have been found to alleviate MS symptoms.  and Parkinson’s symptoms.

(article from the BBC on the topic:  http://news.bbc.co.uk/1/hi/health/8510437.stm)

Canada is working on a study.  go figure, the FDA is not very supportive of liberation therapy.

misc:  I ran into a neighbor tonight while out walking the dog.  she saw us walk by her window the other day at  5AM.  we were being followed by a coyote.  nothing happened.  anti-climactic, again.  yeah!

off to our fave irish pub tonight.

so grateful for your support.

one of my girlfriends asked what she could do for me.  my reply, enjoy every day…and play as much as possible.

xox