What does MS look like to me?

What does the face of MS look like to me right now? 

Change- lots of changes going on- change of routine, change of diet, change of what is normal, change of thinking, change of priorities.  Who moved my cheese?  MS did...... so I am getting use to sniffing out the scent of the cheese to find a new normal. 

Live Today- I an no longer sure what today may hold- it may be typical, normal and routine or it may have the added factor of a numbness, foginess or fatigue thrown in just because its that kind of day.  We are learning to rejoice in each day, life in each day and enjoy whatever it may hold.


Fatigue- such an unfamiliar visitor to our life until recent.  When the Bear comes home and needs a nap after work I know you have come to visit.  When sitting and vegging is about all he can do, I know you are the guider of our day.  You are unfamiliar to my once workaholic man.  You are a stranger to the one who can chainsaw for hours with great delight, but now you stop his normal, causing us to find a new normal.  Naps become part of the agenda and its ok; just part of the season of life we walk in for now.

Exercise- the dreaded, avoided and ignored activity that has plagued me for years because I never engaged.  Now you are my friend- you give me strength, renew my energy and lift my spirits.  I am learning to look forward to the audiobook or music of the session.  I am seeing the benefit to me, as a caregiver, and to the bear as he fights to keep muscle tone and strength. 

Simplify- when life causes you to stop and look anew, simplicity becomes a desired goal.  We have begun to evaluate and eliminate.  Proritiies have been shifted and we continue to adjust our life to our words and thoughts of what is truly important.  The stuff that once was so important isnt quite so valuable.  Simple things, spending time and enjoying moments together have risen higher on our agenda.

Priorities- where once the job was the priority all of a sudden health, well being and family have risen to the top.  When faced with an unknown outcome, our vision is cleared and some of the fog of "status quo" and "keeping up" and "everyone does it" show their colors and we start to see again.  Family time, loving well, making memories,  and relationships - priorities to be pursued as we walk through this MS thing.

Grief- the sadness of the unknown.  The fear of what MS looked life in the life of those from my past.  The uncertainty of what lies ahead.  The frustration of no longer being able to do what once was done withouth thought, or not having energy where it was never an issue.  Many griefs, each come and go as they are lived and experienced. I find that at times it comes in waves or laps, then i shake myself, grieve and give it over to the God of the univers who has allowed this season to be filtered through his hands of love and care, and settle in to live another day beside the one I love. 


Green smoothies, shots and supplements- our first book read about MS was Minding Your Mitochondria- the idea of a diet change helping battle MS was exciting.  We bought a juicer and began to juice then  switched to green smoothies.  Not sure how it is helping, but it sure does not seem to be hurting.  As the Bear drops pounds that need to be shed and his body systems work well we are finding a good part of the formula.  Shots- after a second round of MRI films and word of more lesions wisdom indicated shots were in order.  So, this wife who HATED needles and shots now finds herself helping her bear with shots in rotation- he gets the front side, I get the back.  So, in earnest I can speak of "shooting" my Bear!  Supplements- along with the diet shift has come supplemental oils and minerals and ??? - he handles his dosing and drops and again, we see it as part of the formula, not thinking its hurting and perhaps it is helping more than we know.  Just part of this life with MS that we live these days.

We are now ten months into the known journey of MS.  Backtracking to signs now understood we are in reality more like 3 years into it.  It is a journey we never imagined we would take, we dont know what lies ahead, so we take it day at a time.  We trust that God will continue to give us wisdom, that He will guide us and use the journey for some good.  We are changed and challenged as we move forward. 



*the watercolor was done as I processed all that was going on within as I came to terms with MS entering our life.  Each persons picture looks different- this is what my view is now, in time I expect it to change.

Change is all around us

As we move into another fall season I look around and see change all around us.  The garden season has passed, without much to show for the early spring labors.  That has inspired change- I am moving boxes and taking my eclectic garden to task and bringing order to it- straight rows and space between boxes.  Decay set into some of the wood and it is now curbside.  Ahead is a reworking of the water system and order reestablished. 

Homeschooling has taken a different focus- I am tracking time spent by subject- h/s credits must be supported.  We have shifted gears to life skill learning and prep for adult life that will be upon us sooner than we expect.  Therapy has gotten prime attention - both physical/ occupational as well as a new addition - vision therapy.  From first days I can see this need is long overdue to be addressed, so we begin.

The neighborhood has changed- no one has left but change has occurred anyway.  where once the bus came for high schoolers, it runs no longer.  Where once there were many homeschoolers about, the numbers are less this year.  Watching the young men seek out adult lives, children settle into classroom living and moms adjust to new schedules change is upon us all.

I am working my way up to 30 min of exercise 3 x a week.  Presently I am on week 3 of elliptical life, and enjoying it.  This morning I challenged the youngest to beat me on his 10 min- he countered with a 15 min  time option and made my time in 13 min.!  Motivation found for him- seek to beat Mom and throw in a carrot and he is up and walking/ jogging.  I am thankful for whoever invented ipods and their convenience to use while exercising.  yeah for external speakers and no longer fighting with headphones that want to self eject!

We are now about 6 weeks out from reality that MS is part of our lives for now.  I think we are adjusting ok.  Smoothies- check, supplements- check, exercise- check, healthy diet- check, slowing down- trying hard.  living today and not stressing about things beyond our control- trying.  Quirky stuf comes and goes, always glad to hear it has passed and not left a lingering reminder of its presence.  We are getting the meds routine down and also seeking God for strength and healing amidst the things we see to do. 

It looks like I may lose my comic relief child come October.  It seems far away but it could be way too soon.  He has been handy to have around the house to help me with tasks.  Today he blessed me by volunteering to conquer the lawn on his own.  I see him face the challenge of PT and come home sore and wiped, excited about what the Marines will hold.  I dont think of the loss of his feet under the table or the sound of him breezing through the house with his earphones sharing thier ?music?, those things will come in time and we will adjust.  For now I am prepping for the cheese to move, anticipating it but not yet ready to rejoice in that one. 

I will rejoice in the strength the Lord has given me to - give shots,  to keep getting up and exercising, for wisdom in schooling and to live today, today. 

Let the shooting begin!

For the past few weeks I have been coming to terms with new reality. I left for a girls week in CA with sibilings and Mom with my bear handling home life. He juggled life well and conquered many parenting tasks as he flew solo. Just before I returned he had another MRI and doc appt. we had hoped it would be a nothing new, no comment kind of appointment. It did not turn out that way, so as I returned to civilization from 3 days of no service and Yosemite beauty our phone conversation revealed that yes, MS was declared. He would be going on medicine, MS had joined our life.

Words are easier to deal with than reality often, especially when they are words that are not fully lived and experienced. MS - a disease we've seen fundraisers for and known from afar, or in others lives. Now it has entered our home and is making itself known to us personally. So far it has been a gentleman, and so we hope it remains, yet its full nature is not known and therein lies part of the struggle of the adjustment. What lies ahead? and how will i live today with an unknown .... will i live with fear stealing my joy or will i live today for today and deal with tomorrow when it comes at me. I am choosing the later.

As the investigation of the numbness began we heard about drugs- lots of drugs, and our first response was NO! Now that reality of lesions has been seen and lived with and new knowledge has been understood we realize that we can eat well- he is up to 3 green smoothies a day (32oz each) and take supplements- his body is getting healthy intake. Yet as new tingles and symptoms occur the thought of slowing its progression down has become a reality. So, when FedEx stopped by yesterday it was to give us supplies for our shooting clinic on Saturday.

I don't do shots well, I tend to avoid shots, if at all possible, I look away, close my eyes and breathe deep. Yesterday I looked at a syringe for the first time and started to pep talk myself "I can do this" mantra. thankfully there is an auto injection tool in the kit so I have a safety net- a way to help without having to fully embrace the needle. I will be learning a new skill this weekend, another tool in the helpmeet's toolbox of life, who knew 28 years ago that my toolbox would get to be so well stocked ? (eek!)

The reality is settling in as I talk to pharmacy company and clarify monthly copays as it will continue for ?life? ???? As I realize that authorizations for me to talk to the insurance company has been lost in transit and needs to be resent- for I am the admin assistant and navigating the system on his behalf will remain in our future for the future. I am thankful to be here to walk through this with him, thankful for past experience with referrals and therapists and doctors that will serve me in the days ahead.

Often it is easy to forget about MS- for it is "invisible". No sign blares and often the pain and numbness is not mentioned, only later does he speak of discomfort, yet its invasion is occuring. It kind of reminds me of the other uninvited guest we host in our home- epilepsy- invisible until it rears its head, one we are daily dealing with in small ways, wary of in some situations and would prefer to not host, yet it remains. The mental adjustment feels similar as the words become reality and the reality remains invisible to many yet feels heavy on some days and minor on others. Slowly we adjust.

Many small changes are happening. On Saturday a nurse will arrive and teach us to give shots. Shots will be given every other day for ???? and we hope and pray he responds well to a new fluid entering his body to keep the mylon sheath from further deterioation. Fatigue is found at times, so an afterwork rest is a time to recharge for an evening of life together. We have begun to exercise, for it is found to help in many ways, and because we just need to do it. We are talking, reading and praying. We are laughing as the bear throws out "MS moment" when he forgets something- sometimes an excuse, sometimes true brain fog.

We are living today, enjoying today, simplifying our lives to what is important and most needs our time and attention. It feels good to slow down a bit. Life is a journey and we move forward to new adventures, not all of our choosing but knowing that it is filtered through eternal hands we move forward. I am learning to stretch, grow and try new things, so , let the shooting begin!