managing a chronic illness and being your own advocate

a couple of weeks ago I wrote some notes about a blog that I wanted to write about managing a chronic illness.  Those notes included things like:

  • finding the right doctor(s)
  • learning about medications and side effects for yourself
  • how to respond to well meaning people…”my aunt, cousin friend, etc. has x disease and this is what they did”
  • keeping up with a schedule of doctor appointments, when to take meds, how to take meds and interactions
  • making sure you rest enough
  • following news stories as much as you choose to and responding when same people say “did you hear….?”

That leads me to my concerns lately.  MANAGING INSURANCE and getting your medications COVERED!!!  M.S. medications are very expensive and have an interesting variety of side effects.  It is your job to do your research and learn about all of them and decide what is best for you.  My doc will make suggestions and provide lots of literature but it is up to me to decide what to take.  That includes finding out about pricing and how insurance will cover it.  Learning what programs may be available to help you pay for these very expensive meds and following up!

I am changing meds and it’s been quite the ride.  Insurance has now agreed to cover my medicine and I have assistance to help with the $400 monthly copay.  (zero out of pocket for me!)  I have all of that in writing now but no medicine.  Why?  because the doctor and the pharmacy haven’t communicated so well with each other.

What I am trying to say is that it is our job to learn as much as we can about our health needs and our insurance coverage so we can be our own advocate when we need to be.  Call the doctor, call the insurance company and keep notes.  Is it frustrating? SURE?  Difficult?  YOU BET!  But who else is better to learn about and protect our own needs than us?!

If this feels like a bit of a rant I guess it is.  I just know first hand how hard these waters are to navigate and I just want everyone to know that you are not alone and don’t give up!  I should have my medicine by next week!! 🙂

Today’s Gatha:

Instead of being frustrated, I must accept such instances with humor, calmness, or constructive efforts to improve the situation. And when awareness is present , it displaces the kind of grasping that breeds frustration.

Namaste,

Sarah

but I want to do more!!!

the truth is that I feel like I SHOULD do more…it feels to me like I am busy.  2 classes a day, 5 days a week, one class on Saturday.   I have to remember to make an effort to set aside time to rest.  Most of my days are from 10 a.m. to 3 or 4 p.m.  That gives me a bit of time to rest on my own late in the afternoon.  Sounds silly but I feel guilty for not doing more.  I know that I am taking good care of my body and managing my M.S. as best I can.  I plan for social events where I may be standing or walking more than normal.  (M.S. walk…did the WHOLE 3 miles!! resting along the way.)

I’d love to be available to volunteer more, be even more involved in my community but it’s just not possible.  I have to manage my time, maintain my health and keep my strength and mobility up to the standard that I am used to.

I have had conversations with friends recently, we all struggle with taking time for ourselves, making it OK.  Making it all right to rest when we are tired or to say “no” when we may have over committed.  Maybe for me it’s not the M.S. it’s just life or it is the M.S. making just a bit tougher.

It’s times like this when I being to think about things that I realize the M.S. does impact my life….would I do more if I didn’t have M.S? Who knows?  it’s been 24 years since my diagnosis.  Life is good, I am happy I guess I need to remind myself to stop worrying and that it’s OK take time for ME to rest.

Today’s Gatha:

I aim to make every action serve  goal of helping others.  Even resting can have this motivations:  I rest to maintain strength, prolong my life, and be better able to help others.  I am always mindful of my motivations.

Namaste,

Sarah

My Mother’s Hands

As I look at my hands these days I see my Mother….also my Sister.  Of course people say that I look like my mom…my dad, my sister but they are looking as facial features and body type.  Yes we are all tall and slim, but hands?  I am sure that I am on the only one that sees the similarities there.

My Mom was a farm girl…she worked hard as a kid.  Her hands showed it..she was always embarrassed of her large knuckles and didn’t wear rings except for her simple wedding band.  She also had one thumb that she was embarrassed about, it was crushed when she smashed it while opening nuts with a hammer! I just remember how special those hands were to me.  Her gentle touch, the way she rubbed the inside of my forearm as we would sit side by side.  If you have seen my tulip tattoo inside my right arm that is there for Mom.

I always thought my sister had beautiful hands.  She has the long lovely nails that I thought I could never have.  My nails were soft and broke a lot.  I never wore polish. She has strong nails and keeps them manicured,  I so wished for the day that I could do that too! Now I do…thanks to gel polish manicures and a daily dose of calcium my nails are long enough to keep polished now too!!

I look as my nails now and see those 2 strong women reflected in them.  I see that my hands are aging. That  bothers me a bit until I recognize that I see the 2 female role models in my life reflected there in my 10 fingers and carefully manicured hands.

Mom I miss you , Karen thanks for being my big sister.  I know when you were 11 years old and  Mom and Dad brought me home that  I wasn’t the pony you had been hoping for but we’re having a great ride in this life aren’t we?

What stories do your hands tell?

Namaste,

Sarah

Today’s Gatha:

Peace of mind is my top priority.  I reflect on what is truly of value, what gives meaning to life. I set my other priorities on that basis.

the benefits of a list…

or maybe better said the benefits of ME keeping a list.

I have always been a list person.  I love checking the tasks off and if something isn’t on my list I will add it just so I CAN check it off!!

I am realizing lately that the list of things to do on my calendar every day is sometimes what makes get me out of bed.  Those of us that live with M.S. we know that some days your body may say..”I don’t THINK so..no not today”!!  When I see on my calendar my schedule of classes to teach, I know that there are folks out there waiting for their yoga class and maybe that is their reason to get out of be that day.  Just about every time this happens and I do get up…get showered and get moving I feel so much better.

I am so thankful I am able to get up and get out every day.  6 days a week I teach….Sunday is my day to rest and get things done around the house.  I try my best to stick to that schedule and make time to recover from the week.

So happy Sunday everyone…enjoy your day and do something just for you!!!

Today’s Gatha:

As I take my first step, my foot kisses the floor.  With gratitude to the earth, I walk in liberation.

Namaste,

Sarah

today’s lesson on being thankful

the lesson came today from one of my senior (aged) yoga students.  one of the joys of teaching seniors is getting to know them and sharing their lives.

after telling me about bridal gown shopping for the granddaughter that she has raised , this lovely almost 90 year old said…”oh come outside with me and see my new WINDSHIELD!!”  she was so excited.  she wasn’t mad that something happened to break her windshield, instead she was thankful for insurance that paid for it, for  the installer that came to her, and that he didn’t make a mess and “didn’t even leave glass everywhere!” she just kept saying “doesn’t it look good?”  of course I oooh’d and ahhh’d appropriately.

this is the same woman who 2 years ago was so negative that I gave her an assignment to tell me at least one positive thing every time I saw her.  at the time her granddaughter was working overseas in a very unstable part of the world for the government.  this sweet lady would watch non-stop news coverage and she worried constantly.

today to hear about the wedding dress shopping and the lovely new windshield was just great.  a real lesson in being grateful for things like new windshields and not worrying about the reason that we needed one.

today’s gatha:

every moment can be used gain insight and from that calm arises.  I aim to practice constant mindfulness.  this brings tranquility and insight.  I can sustain wisdom even in the midst of ordinary activities and distractions.

Namaste,

Sarah

p.s. yes I did say almost 90 and she does drive!! she is in great shape both mentally and physically.

learning to be still at 60 MPH!!

Lately I have been driving in silence.  No radio.  It’s been rather nice.  I am finding that arrive at my destination more relaxed.  Since most of the time I am driving to teach a yoga class, this is a VERY good thing.  I am in the perfect, quiet frame of mind to start a practice with my class.

I hear the sounds of the road, the big trucks, the teenager’s loud car or someone else’s radio!!  The interesting thing is…..I find that my mind wanders less!  When I don’t have the music to distract me my mind stays rather quiet.  I thought that the radio kept me from thinking….turns out it creates thought.   I know it makes sense but don’t we all use some sort of sound as a distraction? The music in the car or the T.V. on at home.  I used to say that I kept the T.V. on as a distraction.  Long ago I started keeping it off during the day when I am home.  Quiet at home,  quiet in the car it just makes sense.

I must be getting older….(OK for me to say but NO ONE ELSE!! )  :-O I remember wondering how my parents could stay in such a quiet house.  Turns out they were onto something.

Today’s Gatha:

The off button brings peace and quiet.  It brings me to myself.  I turn off the TV and turn on life!!

Namaste,

Sarah

STOP teaching yoga!!!

That was the title of an online article I read recently.  I stared and stopped reading it a couple of times before I made it all the way thru. I thought maybe it was someone who would be not so nice to those of us who teach gentle or adaptive yoga as not “real” yoga.  Turns out I agree and LIKED everything they said once I got the courage to read the whole thing.

What the author wanted to communicate was to not TEACH but to more share your practice. Share your challenges and your successes.   That is what I have done from the start and why I got started.  I just wanted to share what yoga has done for me.

From the early days when a friend would come over and I would practice with her, to now when I am teaching up to 12 classes a week.  Every time I am sharing my love of yoga and yes we call it teaching.  Every class I tell some part of my story, my struggles, which asana have come to me over the years, which ones are still a work in progress. It’s never been my time to show off, it’s always been my times to encourage others to begin their yoga journey.

Join me sometime and let’s practice together!!

Today’s Gatha:

The whole world is my teacher.  What am I teaching others?  I sit in stillness and listen. With a quiet mind, I find a way to teach kindness.

Namaste,

Sarah

my reminder this morning to slow down

On the way to teach my yoga class this morning a group of Canadian geese taught me a lesson.  That lesson was to always take time to slow down and enjoy the little moments.

Those of you that know me, know that morning is my least favorite time of day.  This class is at 10:30 and I  try to be there by 10.  My eta this morning was close enough to that.  Then as I got close to the studio I had to stop and wait for a (is this the right term?) gaggle of geese to cross the road.  I just smiled, took a deep breath and watched.  I think they are lovely so I just kinda giggled as these creatures stopped several lanes of traffic.  Once we were able to proceed, the feeling of being rushed and hurried was gone and I was relaxed.

When the class asked for a more gentle, yin yoga type class I knew those geese had prepared me for my day!!

Today’s Gatha:

Waiting is the practice of patience.  I develop my ability to wait and listen, going deep into stillness. It is seeking without seeking. Deep slow breaths help me practice waiting in the current moment.

Namaste,

Sarah

always remembering to practice what I preach!!!

in the days since Christmas I am remembering to slow down. The holidays were great…parties, baking yummy treats, spending time with friends and family.  I think it was  the cookie baking marathon that did me in.  Putting candy pearls on cookies with tweezers?  who does that?!  they looked great and I was terribly proud but that day is when the WAY tired began to set in. These last couple of days I have been very careful to make sure I do a whole lot of not much.  Understand…I am still doing my regular chores etc. just taking it a bit slower and asking for help.  (what a concept right?)  people want to help us, we just have to ask!!

I am sure that a relatively restful weekend and a couple of days off for the New Year and I’ll be back in business. Understand that I love to talk about the life that I am able to live despite this M.S. thing…sometimes I just have to remind myself…”ok….girl, you do have to monitor your energy as the fatigue monster is always lurking.”

It seems that time at home gets to me more than when I am out and about. I honestly think it’s the stairs.  I am trying to better plan the up and down trips.  We’ll see if that helps.

In the mean time I will continue to talk to my students about taking care of yourself and listening to your body and it’s need, but I will also quietly whisper the same thing over and over to myself.

Namaste,

Sarah

Today’s Gatha:

I must stop, calm down, and rest heal.  I cultivate receptivity and acceptance.  I work to create the right conditions for healing by acknowledging my suffering, exploring it and letting go.

too busy or not busy enough?

It’s an ongoing struggle.  What is too busy?  What is just right?  I have some time off from a couple of classes right now and of course during the busy holiday season that is a good thing,  I do have a little extra “stuff” going on.  A bit more baking….decorated the house a little.  HOWEVER my body is missing the yoga!

One of my twice a week classes is just meeting once a week for now. It is the most active class that I teach.  A lunchtime class with a group at an office building.  Taught them yesterday and it felt SO good!!  I wish I could motivate myself to find a class like that for myself.  It takes me a while to work something new into my schedule.  That and I go back to that person long ago who worries about “will they know that I have M.S? will the wonder why I wobble sometimes?”

Finding a morning class ……aka motivating myself out of bed in the morning is tough.  ….and oh yeah….I could practice at home but that hasn’t started yet either.

Can you feel the confusion?  I think I am trying to learn the difference between what is enough rest and what is just enough activity.  I must admit I do adore being at home.  Keeping my space just so…planning things.  Next month classes will ramp up again and I will enjoy that too.  Maybe then I will compare how I feel busy vs. not quite as busy.

This M.S. monster is a weird one.  Those of you that know me know that I like to control things and have everything just right.  M.S. isn’t so cooperative.  I’ll keep you posted if I find a way!!!

Today’s Gatha:

Chasing after the world bring chaos,  Allowing it to come to me brings peace.

Namaste,

S.

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