Living With Scleroderma With a Smile

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Sunday, June 28, 2009

The Nichols"Outback" Family Camping weekend




We enjoyed the "Nichols Outback" family campout last weekend on Friday and Saturday. Each year we set up camp in the back of our property and enjoy a campfire, fireworks, and "family time". This year the weather was so beautiful that we were able to swim in the pool before heading out back. The following morning it is a tradition to cook breakfast over the campfire and just "play" in the woods! This was the time of year that the wild strawberries were 'ready to pick"....so the children had lots of fun picking and eating them:)

I have shared highlights of our time together....but no captions(sorry)....but I think the photos speak for themselves! Enjoy!!!



































































































Saturday, June 20, 2009

An Amazing Man


Sunday, June 21st is Father's Day and I want to take this opportunity to honor my husband Ken. I ponder over the cards at the store every year as I try to pick out the perfect one to give to him. None of them begin to say how much he means to me and how wonderfully blessed I am to be his wife.


The past two years have not been easy for Ken......yet he is a man that never complains. He has incredible inner strength and a deep faith in Jesus Christ. Ken has been the backbone of our home....he cares for me lovingly and tenderly and I always know he loves me unconditionally. When the Lord brought us together He must have known what a perfect match we were! In August we will celebrate 31 years of marriage and this Father's Day Ken celebrates 28 years as a Dad.


The responsibilities of our home can be overwhelming for one person, and even though I try and help as best I can, Ken carries the bulk of the load. He works hard at his job to provide for our family, he cooks, he cleans, he mows, he cuts and stacks wood for winter, he gardens, fixes everything and anything that breaks, he does the laundry (hanging it out on the clothesline to dry), and helps me with absolutely everything that he can.


The pressure of raising a special needs son is something some men would abandon in life....but not my husband...he is so patient with Joel...and provides Joel with so much love and security. At this point I'm sitting here and blubbering as I write this....but I just want to share with you how much love I have for my husband....and how grateful I am to him.


As I watched our sons grow up and become fathers themselves I am confident in the example they had from their dad and the love he gave them (and still does). Even though he didn't raise daughters....he loves and teases our daughter-in-laws as if they were his own daughters. Our eight grandchildren are the "apple of his eye" and I know the memories they share with Ken will forever be engraved in their hearts!


So, Happy Father's Day to my husband........may every day be a special blessing from God....and know that I love you with all of my heart and soul!


Tuesday, June 16, 2009

Scleroderma Update

I had my 4 month check up with my scleroderma specialist Dr. James Seibold at the University of Michigan on Monday, June 15th.
Great news!!!! He is seeing some improvement in my skin.....specifically in my face, neck, and trunk. I also showed marked improvement in my Pulmonary function test (PFT).....so this indicates my lungs are still working well....and there is no internal involvement! Ken and I were thrilled to hear this news...and praise God for these two changes!!! In addition...Dr. Seibold is going to see if I can resume therapy on my hands and do this under a special research study being conducted by the University of Michigan.

I did receive hand therapy for around 7 months last year....but insurance denied the continuance of it because my hands were not improving.
The research project at U of M is specifically designed for sclero patients and is done locally in cooperation with U of M. This may take some time to be approved and scheduled....but we are praying that God will "make a way".

Dr. Seibold also increased my medication "Cellcept" which is an auto-immune suppressant. He stated that the disease (although incurable) can run it's course and hardened skin can begin to soften....but he also stated he is unable to pinpoint the reason for improvement. We can pinpoint it.......THE POWER OF PRAYER!!!! There are sooooo many of you that have faithfully prayed for me since the onset of my disease (2 years ago this month)! I continue to thank the Lord for what He has allowed me to experience by becoming ill....I know that sounds strange...but had I not gone through this valley....I would have missed the blessing of facing this challenge in my life!

Realistically I have a long way to go.....but am elated for the short distance I've come! My prayer is that through my life and trials of my health that God will be glorified....and lives are touched...and that others are moved in their hearts to trust God....our creator....the Alpha and Omega...the beginning and the end!! With the love of Christ in your life...you do not need to fear!!! He can do amazing things with you and through you!!!!

Sunday, June 7, 2009

Happy Birthday to Jason!!!





Jason celebrated his "28th" birthday on June 6th.....and we celebrated it with him today!!!! Ken picked out some juicy steaks and they fixed them on the grill at J and Em's house! Thanks Emily for making the side dishes!! We topped of the dinner with a piece of birthday cake that the kids decorated for their Daddy! It was covered with sweets:) YUM!


I can't believe our firstborn son is 2 years away from 30!!!! I am feeling older!!! I know......that's life! And how joyful our life has been raising our sons! Happy Birthday Jason and we pray this year is full of adventures and blessings! You are very special to us and we celebrate your life today.....and every day! God Bless........Love Dad and Mom

Friday, June 5, 2009

Funny Thoughts from the last 48 Hours!!

  • Thursdays with Grandma: Isaac, Seth, Annabelle, and I were on the Rhino while Uncle Joel followed us on the quad. Things were going well until Joel decided to take one of the jumps out back.....and wasn't wearing a helmet. Well....thinking out loud I said "Oh boy.....Grandma's not too happy with Uncle Joel for doing that without a helmet". So promptly as we stopped the engines and I said some words of correction for Joel, grandson Isaac chimed in with the following: "Uncle Joel....you are not riding responsibly if you don't have a helmet on! If you don't ride the quad responsibly, you will not be allowed to drive it again until you are responsible!" Joel looked at Isaac, then looked at me, then back at Isaac.....burst out in a huge grin....and said to his 5 year old nephew, "Then I guess I'll just have to be responsible". So up to the house he went....driving back to us with his helmet on!

  • Almost 4 year old Seth came in from outside a little sweaty and warm. I said "Seth....why don't you have a big drink of water so your body stays hydrated!" Seth responded, "Grandma, Mommy says if I drink too much water my body will pop!"

  • I went to CHS today to attend a luncheon honoring my retirement. Upon entering the building I spotted three boys just standing around as school got out for the year...not looking like they were in a rush to go anywhere. First, I asked them if they knew me (they did not), then I politely asked them if they would be willing to go to my car and bring in a few things I had brought for the event. So I handed them my car keys, told them, what I needed, then waited for them to return. Back they came toting everything I asked for and then happily took it to the room where the luncheon was held. I was quite pleased with the pleasant attitude and willingness to help from these three young men.....so I shared the story with the staff.....naming the first names....only to get a roar of laughter!!! Evidently I had handed my car keys over to a young man who was just released from jail this morning for a probation violation! I smiled back at everyone and said "I have always been a trusting person!"

P.S.(In the backseat of my car was my checkbook and in the front was a bottle of my pain meds.....untouched....WHEW!)

  • Tonight I was pretty tired out so Ken offered to out our pony "Sugar Babe" in her stall for the evening. She met Ken at the gait with her little nickering.(pony talk).....and he went to put her in the stall. As he went to close her gait....there stood our golden retriever "Cash" in the stall with a piece of manure in his mouth! When Cash saw Ken and the pony enter the stall....he panicked looking eagerly for a way out! Staring at Ken and the pony....Cash dropped his prize catch from his mouth and scooted past the both of them!!! It was one of those "caught red handed moment.....drop the money and run....or in this case.....drop the poop and scoot:)

Tuesday, June 2, 2009

Retirement Dinner and Family Fun

When you choose to work with kids and make it your career,
You have taken a path in life that some would not go near.
For to work with kids requires more than talent or special skills
It’s more than just a paycheck and a way to pay your bills.

The lives you touch, the lives you change are forever in your heart
The impact that you leave on them is felt right from the start.
Friends may say “I could never do what you do every day!”
Tell them you do it for the love of kids…and certainly not for the pay.

Kids can teach you many things if you give them half a chance
When to laugh, when to cry, and sometimes when to dance.
Looking back on our lives with them….lots of joy and sometimes stress..
We have been the ones who learned… we have been so blessed!








This was a poem that I wrote the day of the retirement dinner. I decided to post it here....because (LOL) I FORGOT to share it at the dinner!


The evening of the dinner each retiree has someone special speak about them and share some highlights of their career. I asked Paul Liabenow to be that special person! He shared some wonderful thoughts....some humorous and some that brought me to tears. Paul is the Superintendent of Cadillac Area Public Schools. He and Bonnie have been friends of ours for the past almost 30 years. It was an honor to have them share in this memorable evening.

After the presentation I was invited to come up to the podium and share some parting words. I thanked several people (staff, CAPS, my parents, my family, and most important, my husband).....and then I had every intention of sharing the poem at the end of the thanks....well...oops! I forgot...which is so unlike me:) The evening was terrific...and I will always hold this closure close to my heart!

Kurt and Heidi were here for the dinner with their family, as well as Jason, Emily and their family, plus Dad and Mom. I hope you enjoy the pics of this event. The captions should explain who everyone is!!


Ken and Judy

Emily, Annabelle, Jason
Kurt and the twins...Kirsten and Rachelle


Kenn, Isaac, Andrew, Jon, and Heidi

The Nichols Family table
(Ken was taking the picture)
Everyone was so impressed how well behaved our
grand kids were in the midst of all of the excitement!
Eight kids under the age of 5 1/2. I am sooooo looking
forward to when they are 15,14,13,12.5,12.5,12,12,11...
We can have a Jr. High Octet! 8 part harmony....or two quartets..
4 boys....4 girls....2 bass, 2 tenors, 2 sopranos, and 2 altos when
they are in High School!
My Sr. High buddies! They were so excited they were making it
on the Nichols Blog!!!
L-R Julie Netzley, Theresa Williams, Linda Feister, Janet Neyer,
Joyce Oatley Nancy Vollmar, Kathy Bryson.
Dad and Mom (Dale and Lois Hopkins)
I was grateful they could attend!

More Sr. High buddies!
L-R Marsha Grace, Sharon Tate,Pattie Neibauer,
Kris Darrow, Me, Todd Bruggema
Dave and Cindy Foley, Pat Shroeder, Jake Morris

Kathleen Bieri, Mrs. Warner, Jerry Sinkel, Marie Mercier

Diana Thomas,Elaine Keller, Laura Stewart

Bob and Jan Kellogg, Pat Briggs
Paul, Bonnie, and Jordan Liabenow
Board members Judy Coffey and Roger Hopkins
My thank yous
Superintendent and Good friend Paul Liabenow
(my corsage was tipping over.....oops)
Group Shot after the dinner
Here I am with Maynard Thompson, the principal who
first hired me at CAPS in 1977!!
My first and only job that lasted my entire career:)




Family Fun

Kirsten with our golden retriever Cash!
Cash's pedigree name is "Walkerview's Music Man"
because he was born the year I directed "The Music Man".
The opening number started out "Cash for the merchandise"
so consequently....his nickname became "Cash".
Baby Madeline....now 7 months

Kurt and Heidi's dog...."Gus"
Andrew getting his first pony ride on Babe


Jonny's turn

Next was Kirsten
Then it was Rachelle's turn...
she wasn't quite sure about this:)
Kirsten and cousin Seth

Relaxing in the living room
Rhino rides
This is fun!!
Kurt and the girls!
Grandpa and Jonny catching some "zzzzz's"
Andrew and upside down cousin Madeline

Isaac relaxing reading books
Annie waiting for a cup of juice:)
A little visit at the end of the day!
What a wonderful time we had celebrating with family and
friends this special occasion! I am beginning a new chapter in my life....and am looking forward to the pages of my book as they are written daily. I am most thankful for the Lord, My God, who is the author of my life and those pages! Despite what I face physically.....I AM NOT AFRAID! And I joyfully anticipate these "retirement" years:)
Philippians 4:13
I can do all things through Christ which strengtheneth me.