discovery.

what a cool weekend this has been.

we attended a newly diagnosed seminar yesterday.

awesome.  not as scary as I thought it would be.  only one of the MS peeps exhibited external physical symptoms of MS.  she was in a wheelchair.  but had no problem taking notes and getting more coffee.  yeah!

the first speaker was AMAZING.  licensed clinical social worker and hypnotist.  my age.  changed her life in 2010.  she had always wanted her own practice.  so she opened her practice in HB.

she has had MS for three and a half years.  first year was the hardest.

her life change came after diagnosis.  complete inspiration.  she said she wouldn’t be where she is now…without MS showing up uninvited.  she talked my language, and reminded me so much of my friend Karen!

second speaker, was cool too.  he reminded me of my doctor-doctor cousin.  he conveyed that clearly the medical community doesn’t know enough yet about the connection between fatigue and MS.  huh.  my husband was perplexed by this.

big take-aways:

-> I am not MS, but MS is a tiny part of me.  hands cupped at my right side.  MS is with me, but it does not define me.

-> it’s normal for people to think that there’s nothing wrong with me.  huh.

-> except when you’re walking around like Jack Sparrow.  he shows up when I stride.  I have learned to walk more slowly and take smaller steps these days.  many folks with MS walk around like they’re drunk.  go figure.  if only we were!

-> all the up and down emotions I have experienced…are completely normal.

-> reinforced what I already know:  the scariest thing about MS is the unknown.  everyone has the same story of that fear.  good lesson for me to live in the moment.  this is my wake-up call.

-> we tire easily.  that goes along with the MS ride.

-> one of the women at our table suggested I read Healing Multiple Sclerosis.  on page 32 as of this afternoon.  it’s good.

felt overwhelmed and exhausted after the four hour session…

so we stopped by the movie theatre and saw Puss in Boots…seriously.  we laughed.  🙂

slept well last night after a last minute freak-out.

today was a good day too.  I got a call from MS Society Laurie.  she experienced the same clinical symptoms I had before diagnosis!  she is in her 60s now and confident I will follow along just fine.  yeah!  she sounded so happy on the phone.  love that.

I’m meeting her in December.

life will return to normal. it already is.

hope you peeps had a great weekend!

xo

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good day, again…

despite the migraine which lasted exactly, not approximately, 24 hours.

it’s gone now.  Yeah!

pop up video:  according to about.com, up to 58 percent of people with MS experience chronic migraines or recurring headaches, compared to 16.5 percent of the general population.

found the funny tonight, complete with a theme song:

http://www.blogtalkradio.com/mslolradio/2011/10/20/humor-me-finding-the-funny-while-living-with-ms.

tragedy + time = comedy

though my husband found the funny quickly.

DOD (day of diagnosis)…

“at least we now get to park up front and use one of those scooters at the Target.”

I laughed.

xo

perfect day.

today was a perfect day.

the lavender oil worked!!  full night’s sleep…perfect rest last night.

I know I didn’t wake up.  I dreamed.

work was easy with no hint of stress.  I laughed a lot.

chiro tonight.  perfect adjustment.  perfect massage.

now home with my husband.

I was reminded today not to let this define me.

I’m not.

I’m using this to find my voice.

have a fun idea I’m mulling.  details will be provided once I’m organized.   maybe.  😉

xo

turnaround.

it’s my life.  it’s now or never.  jon bon jovi.

in my Martha Beck life coach training, I learned all about thought work and turnarounds.

turnarounds jog your brain, giving you a different way of looking at things going on in your life…specifically things that are troubling you…and as a result you develop new neural pathways and changes in your “normal” way of thinking.

so you can feel better and accept reality!

turnarounds are hard!  you have to work at them, over and over again.  hire a coach trained in The Work, and you’ll see.  harder than a positive affirmation or mantra.  I have those down pat.  for you peeps out there, Jenny McCarthy is a fan of The Work.

today, I reached a small turnaround.  turtle steps.

original thought:  I feel like I’m going crazy I’m so wound up all the time.

turnaround:  I’m not going crazy.  I am experiencing what lots of other MS peeps have.  and that’s okay.

evidence to support my turnaround:  NorthWestern researchers in neuropsychology have found that many (in fact most) MS patients feel like they have been going crazy until the final diagnosis!

then the crazy is replaced with momentary relief – “I’m not going crazy, it’s MS!  YEAH!”

unfortunately, that newfound relief is usually short-lived and replaced with anxiety for approximately six months-two years…of ups and downs as the reality of an unpredictable life sinks in.

the new normal takes time.

someone said to me today…life wouldn’t be fun if it was predictable.  umm…yeah!

I got a hug from a coworker today just when I needed one.  that was unpredictable.  and, it felt so good.  she has been following my blog without me even knowing!  and then someone gave me lavender oil to help me sleep. again, unpredictable!  love that.

starting to lean into the unknown.

get this>>>apparently, peeps who receive a more dire prognosis (with a finite conclusion) than what MS has to offer (unknown), fare better emotionally than MS patients.  huh?

that hurts my brain.

xo

processing.

as you may have noticed from yesterday’s post, I’m processing…and watching my thoughts…most of the time.  😉

both top priorities for me these days.

I was on a Copaxone sponsored patient conference call tonight, and reality is sinking in.  though it was a great call. lots of stories, some like mine, some not.  some hurt.  others inspired

topic was sleep.  or lack thereof.

conclusion: I need more sleep and less stress in my life.  both of which I can control.  most of the time – ha!

shots have been a tad painful.  tonight my brilliant husband gave me a tip while watching me prep to inject my right thigh.

don’t push so hard on your auto-inject, baby!

simple.  still hurts though as the meds make their way around, but the initial injection is much easier.

not looking forward to tomorrow night’s shot.  I still have a lump on my tum from last week’s injection.

that’s all I got tonight.

PS. I have joined the Carnival of MS Bloggers! amazing stories out in blog-land.  I can only hope to be as good as others.  some stories are like mine, some not.  most are inspiring.

connection…

after a rough week my friend, Lori, reminded me about patience today.

I realized this morning that I have been denying patience with myself.

a lot.

all the time, in fact.

Lori says “the opposite of patience is anger.”

that caught my attention.  fast.  goosebumps.

I started mulling this over and realized that I have been angry at my body for most of my life:  there has always been something wrong with some thing God gave me.

I can count on both hands and feet the number of things I don’t like.  from my nose to my toes.

and now, there’s even greater reason to lash out at my physical body:  it hurts, it buzzes, it won’t move the way it used to move…or the way I want it to move.

my body is fighting back.  at me.  finally.  and in a big way.

wow.

need to do something about this.  my husband always asks me how I can see beauty in everything, everyone around me, in people I don’t even know, but not in myself?

I don’t have a good answer anymore.

intentions for the week:  become my own thought watcher.  interrupt when necessary.  rest until it’s time to play.  play until it’s time to rest.  repeat.  get out of God’s business.  

hard start to the week…

pre-read warning:  ramble ALERT with lots of narrative!!

hard start…started with a sleepless Sunday night…arghhh!

but it got better today…thank you GOD!

there is something that is going to be good out of this adventure…it was supposed to happen.  otherwise, it wouldn’t have happened.  can’t argue with reality.  you always lose.  Byron Katie is one scary genius.

I cried on and off for a half hour in my office Monday at lunch time…the tears just kept coming…hate it when that happens, but what can you do, other than roll with it?

sidebar>>here is what I have been paying attention to when it comes to crying (since it’s been happening a lot lately):  it allows me to process what’s going on in that moment from all the feelings that have welled to the surface (glad, sad, fear, or anger).  ever notice how the big flow of tears only lasts for 9o seconds?  it does.  take note next time, if you let them roll.  then a new thought enters, the crying either subsides or it starts over again for another 90 seconds…or you laugh.  huh.  it’s kinda cool that our bodies alert us to pay attention to what’s going on – on the inside – it will show up one way or another!

note:  not looking for any sympathy with all this crying biz!  seriously.

there is a lesson in all this…and last night, I decided to examine why I was so emotional yesterday.  I didn’t associate with anything – I just watched my thoughts and feelings – like a compassionate observer watching my thoughts roll by.  as a result, I didn’t beat myself up (my usual MO).  here’s what I concluded:

1.  EXHAUSTION:  I was going on two hours of sleep.

2. FEAR:  what I have experienced since 7/29 has been overwhelming.

3.  COMBO of all four emotions:  I have been thinking about all my relationships with friends, family, work…and how I have let so many people down…and why do I do that?  that took some serious compassion not to beat myself up on that one!!

4.  FEAR (again!):  I am fearful of what this diagnosis means for my future.  when will the next relapse occur, when will this one end, and what will the next one be?  (Sunday for example, I had a new electrical jolt hit me like a gigantic bee sting – Tim confirmed that no bee had made his way through all my layers of shirts.)

I can handle all of the above.  

1.  EXHAUSTION:  I need my sleep.  I like to sleep.  when I can’t, I will do something with my time to better my time – read, write, play Angry Birds – rather than thinking about the fact that I’m not sleeping, tossing and turning…and then stressing about not sleeping.  that never works.

2.  FEAR:  Yep, but it could have been worse!  and I’m doing something about it now, despite the daily fear when I give myself a shot.  (tonight’s was a doozy!)  I will get used to my new normal.  here’s how I’m bettering it:  Tim and I have decided I will only give myself a shot when he’s around just in case my body decides to reject it.  

3.  COMBO:   I don’t have to take everything so seriously.  there is not always a crisis awaiting.  my husband loves me.  he really does.  my friends, family, and buddies love me.  my dog adores me.  bag it:  I can’t control other people.  duh!  

4.  MORE FEAR:  I can only live in the moment.  I always say, that all we ever really have…is right now.  I will listen to my own advice.  huh.  better it:  start going to yoga again and focusing on the good in what’s happening right now.    

Misc illuminations>>

I have discovered that there is a whole world out there that I had no idea existed until MS entered.  there is something I can do to be an active member of this new world and give back.  just haven’t figured out what that it is yet.

going to a newly diagnosed seminar at the end of the month.  can’t wait, actually.

this post was a bit too serious for my book…but again, what else can I do?  I have five more blog titles waiting for me…I will try to work on MS Blogs Galore this weekend…or before.  we’ll see what happens.  and that’s not something worth worrying about right now.

xo

Copaxone 101

first of all…clearly, I need a WordPress lesson.  still can’t figure out how my last post ended up as its own tab! 

another day I’ll sort that out.

so let’s talk about my meds.

Name:  Copaxone

Dosage:  one daily subcutaneous injection

Initial reaction:  it is genius

I’m three shots in, and my body map is slowly expanding as I track my injection sites.  To prevent skin damage (lipoatrophy and skin necrosis – yuck!), I have to keep a clear map of where I have already injected.  I don’t want to hit the same place for at least three weeks in my arms, and eight weeks for my hips (more room there, obviously!).

today will be my left thigh. tomorrow, right thigh.  Tuesday, stomach (ouch!).  Wednesday, left arm.  fascinating, eh?

from my recent research, Copaxone is a protein immuno-modulator and works in the following manner:

the proteins attach to my brain cells – yeah!

my white blood cells, which are currently attacking my brain – are now supposed to be more attracted to the proteins supplied by my new friend, Copaxone.

that’s it.

huh.  I love this idea.  it’s genius!  oh wait, already said that.  it just makes sense.  instead of my WBCs picking on the useful parts of my brain, the protein is a stand-in.

(my doctor-doctor cousin is probably groaning at this un-scientific explanation.)  😉

two weeks to break the blood-brain barrier.

I hope it works.  only time will tell.  group finger-cross please!  the nurse said that I should start to see a small improvement in my current symptoms once it breaks the b/b barrier.

what it’s supposed to do long term:  reduce the frequency of relapses and reduce the length of time involved for each relapse.

the only side-effects I have experienced:  intense stinging for 20 mins post injection and a red welt, which disappears in about an hour.  plus the injection spot is tender until the next morning.  but that’s IT!

I’ll take IT.

definitely doing better on the emotional front now that I’m actually doing something to help my body.  writing helps.  I don’t do so well with the talking out loud all the time.  oh, the other plus>>this is the one drug that doesn’t have depression as a side-effect!

PS.  got back on the bike yesterday.  and that felt so good!  my legs were a buzz for hours after…and we only did four miles off road… but it’s a start!  I want to keep my legs moving.  no MS ride for me this year.  but there’s next year.  my uncle is doing 100 miles!!  wowzer!

that wasn’t so bad…

…but need a break now…nice red welt…and a little blood.  tomorrow will be my right hip.  I have to keep moving my injection site to prevent permanent skin damage.

this is my new normal.  weird day on many levels.  glad tomorrow is Friday.  I’m wiped.

catch y’all later…

PS.  bummed I missed Oprah’s live class tonight…with Martha Beck.

xo

disappointed…

…the nurse had to reschedule.

tomorrow night is the new night.

great, so I get to be anxious all day tomorrow as well. or not.  I choose not.

there are worse things in the world.

just heard that the worst massacre in OC history, happened today.  down the street on PCH…at a salon, where people were taking a break from the chaos of daily life.

my heart breaks for the families of those involved.  the police caught the dude who did it.  apparently it was because of a divorce.

you guys have no idea how much you are helping.  thank you.

hope you all have a good night.

xo