new thought to change

last time i managed to change my thoughts from angry to content.  i'm still practicing.  it's often easier said than done.

as i practice my mood changes, i'm making an even bigger change.  for years now, i've been praying for a strong, healthy body.  it finally dawned on me that while i am differently-able than typical humans, i AM a strong, healthy, able person!  this is a huge shift.  my prayers were answered long ago without my noticing.  i'm still looking forward to a miracle where MS is gone.  in the meantime, i will be spending more time focused on my current strong, healthy, able self.

wishing you thoughts that will change your world!

changing thoughts

Change your thoughts and you change your world. ...Norman Vincent Peale

this quote often confounds me, but tonight it worked!  i was crying over the 15th frustrating thing to happen to me.  i stopped for a second and asked myself, 'do i want to spend my time being angry or do i want to enjoy myself?'  the tears stopped abruptly and i looked at facebook to see how my friends are.  i've stopped to write this, then i've got bills to pay before i can look for more fun.  but the anger, frustration and sadness are gone!  at least for this moment my world feels okay, and living in the moment is what keeps me going.  i hope i can change my thoughts easily every time, but i think it will take practice.

give it a try!  see what you think.  best wishes and happy holidays!

tysabri, take 2

well, i'm disappointed. that extra energy i got from my 1st go around tysabri has not returned. three days after my initial dose in august of 2009, my energy was markedly better. i lost that when i switched to gilenya. now i've had 3 new doses and no benefit. is it slowing my progression? i hope so. it certainly isn't stopping it. but my neurologist agrees that tysabri is my best choice.

i try not to worry. i deal with each day as it comes, frustrating or not. i'm visualizing my fully able self.

i'm just starting to explore quantum physics. can i direct electrons from my source into the healthy version of me? it's worth a try. i'll keep you posted.

breathe

this song really spoke to me:

Breathe by Ryan Star

She's fine most of the time
She takes her days with a smile
Moves like a dancer in light
Spinning around to the sound
But sometimes she falls down

Breathe, just breathe
Take the world off your shoulders and put it on me
Breathe, just breathe
Let the life that you live be all that you need

Let go of our fear, let go of our doubt
Let go of the ones who try to put you down
You're gonna be fine, don't hold it inside
If you hurt right now then let it all come out

i try to do this often. i sit still, breathe and remind myself to enjoy or appreciate the moment. of course, some moments are awful. in those i remind myself things will eventually be okay. that is after i've cried and yelled to let the pressure release. as bad as things get, i do find ways to comfort myself and figure out how to deal with the next frustration.

the best thing to remember is to breathe.

back to tysabri

well, the long awaited oral disease-modifying drug, gilenya, fell short for me. it is supposed to slow down MS progression. it may have slowed things but i've still felt slightly worsening symptoms.

i felt progression on tysabri as well, but it gave me a great benefit. from the 1st dose i had a healthy amount of energy. i was able to do 3 days of activities and feel fine after a good night's rest. it's been years since i could do that! even in the early years just after diagnosis, i would have to rest a full day after most activities; for instance, visiting a friend out of town. i was much more active then at 23 years. it was a noticeable difference though. i needed more recuperation than my pre-MS years. now, along came tysabri and my stamina was great! i had hoped gilenya might be better, but i'm back to needing to rest a full day after being out and about.

i really miss the energy boost i got from tysabri, so i'm going again. the monthly stick of the i.v. is not fun, but it was worth the benefits. so gilenya will go by the wayside. i'll have to wait a month between drugs. also, they're doing a study looking for some virus that many of us carry around without knowing. if i have it we can still go forward with caution. if i don't have it i'll know tysabri is less risky for me.

medicine is often a necessary evil. so we must be knowledgable about the drugs and about the way our body reacts to them. wish me luck! good luck to you too!

how are you feeling?

have you gotten used to this question yet? ever since i was diagnosed that question pops up again and again. when talking to a healthy person, people ask, "how are you?" get a disease and people ask, "how are you feeling?" with that sad look when they emphasize feeling.

after 17 years i've come to expect it. fortunately, people i see regularly don't ask. i tell them things along the way so they know the answer. i understand it. i think i've done the same to others. when you care about someone who's been sick, you want to know how they're feeling. i just prefer to discuss other things in addition to my MS.

also, there's not always an easy answer. how was i feeling the last time i saw you? if you remember, i can tell if things are the same or different. if i have to list all the details, it sounds horrible. it's easier just to say that symptom x is a little worse. it's great when i can say things are about the same.

another hard question is, "how's the new med doing?" for drugs that are meant to keep things as they are, it's tough to know if things are getting worse or not.

ya know though, all of these questions are valid and come from the heart. i've always encouraged others to ask questions. the more i can educate my friends, family and strangers, the more understanding people have of MS, all help to move forward support for research and services for people like me. it's amazing how many people want to help. i can use all the help i can get.

so, keep questioning. just remember that MS is not the only thing we want to discuss.

listening

i've always been proud of my listening skills. i'm great with teachers and with friends. it wasn't until well into my MS diagnosis that i learned how to listen to my body.

from the beginning, most days i began by feeling my way through activities. stand up, do i have my balance? later...what can i hold onto to get me from here to there? then, do i have the stamina to use my walker or do i need my wheelchair? when i didn't listen and tried to push myself further i usually paid with fatigue.

then there was my bladder and bowels. even when i listen carefully, my body often changes its mind. getting to the toilet and nothing happening. hearing the announcement that something's coming only seconds before the arrival. the worst symptom i've experienced by far is bowel incontinence.

in more recent years i've been listening for progression or lack of it. it's often hard to tell. was this a problem last month? especially being on my more recent disease modifying meds. with tysabri, i felt less fatigue. i could get a shower without exhaustion. i could visit with friends multiple days without exhaustion. my friends stopped saying, "you sound tired." now, 5 months off tysabri, showers are tiring and 2 activities in a day wipe me out. i'm also having more frequent trouble with my fine motor skills. i've only been on gilenya a month and a half. i'm hoping that in a few months the gilenya will pick up where the tysabri was helping. so i listen daily in the hope that things will be the same as yesterday.

i've also been trying to listen to and follow my conscience. i want to stay up to read more. my conscience will tell me, "i need my rest." i'm trying hard to obey because i've noticed my conscience ALWAYS works for my benefit.

what do you hear when you listen?

orange is the new pink

this is the title of a new book coming out in march. my story is one of many in this compilation of stories by people with MS.

you can read about it at:
http://www.themsproject.com/ and
http://www.lainaturner.com/books/f-ms/
[look below right to click directly to links]

laina turner is trying to raise awareness for MS and i'm all for that!

gilenya

well, i finally got it. the long awaited pill to modify multiple sclerosis. i had my 1st dose observation yesterday. at intervals over 6 hours they checked my blood pressure and heart rate and asked if i felt any changes. nope! felt the same from beginning to end. a noticeable difference was a slowed heart rate. this was a plus for me as my heart rate has been running 100 - 115 for a few years. now i'm between 80 & 90 which i believe is more common.

now i take a simple pill once a day. that pill will, by some chemical/biological magic, keep certain cells in my lymph nodes far away from the myelin that protects my nerves. the functioning nerves will remain functioning. there is also the possibility the previously damaged myelin could regenerate. this could improve my symptoms. we just have to wait and see.

there are possible negative side effects, which you can read about at http://www.gilenya.com/index.jsp. use caution, but this medication is the best option for me. good-bye progression!

good luck if you try! i like this quote:
You miss 100% of the shots you don't take. Take a shot! --Wayne Gretzky