Living With Scleroderma With a Smile

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Sunday, March 29, 2009

A Fun Filled Fast Weekend

We had a very busy Friday-Saturday-Sunday....
with all sorts of celebrations and precious time with our family. I've split the pictures up in three categories:
1. Pictures from Joel's talent show
2. Visit to Kurt and Heidi's
3. Annabelle's 2nd birthday
Pictures from WMISD's Talent Show

Joel sang a solo called "Henry the VIII"
he acted it out with classmates helping!
Joel really got into his part
and sang the song very well!!

Ken and I and our Henry the VIII....Royalty


Joel and his friend Mallory

Pastor Bart, Joel and Mallory



Visit to Kurt and Heidi's

Opening birthday gifts
We celebrated Kurt's birthday when we visited
on Saturday...His actual birthday is April 3.
Kurt will be 26 years old! (half as old as Ken)

Kirsten at the basketball game

Rachelle on the ladder to her brother's bunk beds

Girl Time!!!

Heidi, Kirsten and Rachelle
The twins are 15 months already!!

Jon and Andrew in their new t-shirts
that Grandpa picked out!!

Ron and Carol (Heidi's parents) came to the game.
We also had lunch together at
Logan's Roadhouse . They have the best rolls
there.....and they have peanuts on the table in a bucket
and you can throw the shells on the floor!!!
Family picture after Joel's games



Annabelle's 2nd Birthday
Emily made Annabelle a Birthday Castle Cake!
The towers were made out of waffle cones
Annabelle looking at her cake!
Daddy and Mommy and the Annie the birthday girl
Opening presents with brothers
Isaac and Seth looking on.
Annie giving Grandpa some
of her jello....while Madeline watches
Sarah, Emily, Karen and Julie
Annie and Me
Ken and Madeline

Friday, March 27, 2009

Visit to Midland and Funding for Scleroderma Research

From left to right:
Ryan Tarrant, Ethie Blackman, Veronica Gleason,
Judy(me) Nancy Adams, Laura Dyas

On Thursday, March 25th, I had the privilege of attending a meeting with Laura Dyas (Executive Director of the Scleroderma Foundation Michigan Chapter) www.scleroderma.org/chapter/michigan, and Mr. Ryan Tarrant who serves on the staff of Michigan Representative Dave Camp (District 4). Also in attendance were 2 ladies who also have scleroderma and were there to share their stories.


One of the purposes of the meeting was to seek Rep. Dave Camp's endorsement/support of a bill that will go before Congress requesting funding and support for Scleroderma research and awareness. In addition the Scleroderma Foundation would like to update their records as to how many persons have been diagnosed with scleroderma. Their current numbers are nearly 20 years old....and to date there are 12 new cases diagnosed weekly ( I believe at the U of M alone....so imagine in other states).


The other purpose was for Dave Camp's staffers to meet persons who are affected by the disease and to hear how it has impacted our lives. Those of us in attendance who have been diagnosed with scleroderma had uniquely different stories. That's how this disease is!!! No two people are alike! Every case is unique and every case poses many different challenges.

Here is a useful fact sheet concerning scleroderma:




I was very thankful I had an opportunity to attend this meeting. Thank you to my sister Linda for going with me! It was an inspiration to hear other women's stories and to know we have an organization like the Scleroderma Foundation working on our behalf to find the causes and cures for this disabling disease.


I left there yesterday with a renewed excitement about what I can do to raise awareness of my illness and how to encourage others to become part of the solution. Those of you who know me well can just imagine the whirlwind of ideas racing through my head!!! One of the visions I can see for future support for research is a benefit concert with all proceeds going to the Michigan Chapter of the Scleroderma Foundation and securing items that may be donated for a silent auction to be held by the Foundation in June.


Coming up this June I will have had my disease for "2" years!! Even though I am faced with challenges on a daily basis, in my heart I want to help in any small way I can to help conquer this illness!! As always......thank you for following our blog and coming alongside us in friendship, love, and prayer support!!!


Tuesday, March 24, 2009

Tuesday's at Grandmas

Isaac's new t-shirt
Will Trade Sister For Tractor
I told Isaac after making a face like that,
his sisters will want to trade him for a tractor!!

I turned the boys loose in the whirlpool tub for 45 minutes!

They had a blast but were wrinkled like raisins when they got out!

Bubble Mania!!!!

Here's just a few pics of my day with Isaac and Seth. I had the boys visit today because I will be in Midland on Thursday. On Thursday I will have the privilege of meeting with staffers from the office of Rep. Dave Camp, Laura Dyas the Executive Director Scleroderma Foundation Michigan Chapter, and a few others who are affected by scleroderma to share how the disease has affected their lives personally....in attempting to raise more funding for research. http://en.wikipedia.org/wiki/David_Lee_Camp

My sister Linda will be taking me to this meeting....I look forward to spending time with her!!

Tomorrow (Wednesday March 25th) I have my 6 month check up with my dermatologist in TC. Kathleen Erdman will be taking me.....I always appreciate her willingness to go:)

Also this week Thursday and Friday Joel's class has their big "Talent Show"
at WMISD. We plan on going to see it Friday at 10:00 and taking lots of pictures!! I will post those Friday! Then Saturday we head to Grand Rapids to visit Kurt and Heidi and watch Joel's State Sp. Olympic basketball games. Ken, Kurt, Andrew and Jon usually go to the games while I stay with Heidi, Kirsten, and Rachelle at the house and have some "girl time"!

Today I received a call from Fred Sprague regarding Sue Kuhn's progress. She will be at Munson a few more days and will begin chemo as soon as possible. Here is the email update I got this a.m. from Claretta Voelker from Temple Hill:

Amy called to update me this morning. Sue and Steve are asking that we keep them in prayer and specifically pray that function will quickly be restored to Sue’s left side. It is not uncommon for this sort of thing to take awhile to be restored.

This is probably one of my busiest weeks ever!!! Please pray that I can balance my days without "over doing" it...and that my attitude and testimony wherever I am may glorify God!

Monday, March 23, 2009

Update on Sue Kuhn

Dear Praying Friends:

I just received this forward from Vicki Huffman from Temple Hill:

(It was from Deb Miller, pastor Jack Miller's wife)

I just got a report from Jack that Sue just got out of surgery (about 3:00). The doctor said there were no surprises – he got most of the tumor but some was intertwined and he couldn’t get it all, which he expected. Next step is chemotherapy and radiation. Continue to be in prayer for Sue, Steve and the rest of their family. Deb

We also received a phone calls from our friend Jim Johnson, and another from our friend Shirley Taylor, with the same information.

Thank you for being faithful to praying for Sue and her family....please continue to uphold her before God daily as she begins to heal from the surgery and makes plans to have the chemo and radiation to conquer the remaining tumor. It is so comforting to know that there are so many people available to call on (or email) in times like these. It seems that at the touch of a button...we can get the word out...Now what we need to do is to remain faithful to the call to pray!!! I know in my own life I have counted on your faithfulness, love, and support to meet the daily challenges I face! You are precious friends and I want to remember that there is power in prayer! I love the song "What A Friend We Have in Jesus" and will leave you today with these verses:

1.What a friend we have in Jesus, all our sins and griefs to bear! What a privilege to carry everything to God in prayer! O what peace we often forfeit, O what needless pain we bear, all because we do not carry everything to God in prayer.
2. Have we trials and temptations? Is there trouble anywhere? We should never be discouraged; take it to the Lord in prayer. Can we find a friend so faithful who will all our sorrows share? Jesus knows our every weakness; take it to the Lord in prayer.
3. Are we weak and heavy laden, cumbered with a load of care? Precious Savior, still our refuge; take it to the Lord in prayer. Do thy friends despise, forsake thee? Take it to the Lord in prayer!

Sunday, March 22, 2009

Please Pray!!!!


We received a phone call Sunday letting us know that our friend Sue Kuhn has been admitted to the hospital and will undergo surgery Monday for a brain tumor/mass. Sue is a close friend from Temple Hill Baptist in Cadillac and took me to many of my appointments in Traverse City last year....sometime two per week!


Well.....knowing Sue like I do...I wanted to talk with her before tomorrow....so I called up to Munson and was able to talk with Sue for a few minutes. Sue is one of the most kindest women I know....with a true heart for hospitality and gift of nurturing others. She is an extremely humble woman and would never want anyone to "fuss over" her.......but I'll tell you friends.....I am going to "fuss over" her tonight and the days to come and ask you, and others you may share this with, to pray specifically for Sue, her husband Steve, their family....and for her surgery.


Please pray:
1.That Sue would have a peaceful evening tonight
2. For the surgeons and the medical team that assists
3. That the surgery would go well and that mass is safely
removed.
4. That the family is comforted.
5. That in everything God will be glorified!


Sue said to me on the phone that her faith will carry her through and that she is so thankful for the love and support of family and friends. She was able to see her month old grand-daughter today (Mark's baby)...and she was resting comfortably. We prayed together and acknowledged that God is in control of all situations, that He is the Great Physician, and that we take each day as it comes.....trusting and praising Him. When we said goodbye....Sue was more concerned about praying for me....than thinking about her surgery! That is so typical of Sue Kuhn.....always putting others first!


So my dear friends.......thank you for praying!


love, Judy

This picture was taken last July

Front row....Judy, Jolyn, Sue

Back row...Cheryl, Lisa, Cathy

Saturday, March 21, 2009

A Fond Farwell


Today we attended the funeral of our 90 year old Aunt Zelda May from Frankfort, Michigan. It was a sweet time of fellowship with our family and extended family. Aunt Zelda (our Dad's older sister) lived a full and busy life. She raised 5 sons, Roger, Ronald, Greg, Marcus, and David. My cousins Roger and Ronald are twins....and at the funeral we found out that Greg's daughter is expecting twin boys very shortly!!! Hmmmmm...maybe our twin grand-daughters came from Kurt's side of the family??:)


Anyway....we really enjoyed seeing our cousins again and spending time visiting. The last time we were together was at cousin Gregory's funeral a couple of years ago. My sister Linda and I were asked to sing at Aunt Zelda's funeral.....so we did an acappella version of "Amazing Grace". Linda and I really loved singing together again....and I know the family appreciated it.


As I looked around today at my cousins, their children, and their grandchildren.....it occurred to me how fast the time has gone by. It seems just yesterday we were kids growing up....having holidays at Aunts and Uncles....then turn around...zip go the years...and here we are...sharing the memories and bidding farewell to our last Aunt here on earth.


As I reminisced with family before our song....I encouraged that the family still keep connected.....and stay in touch.....even though our aunt has passed away. I feel that one thing she would have desired is to keep the "tie that binds"........... keep this generation and the ones to follow a part of each others lives...whether it be through phone, email, blogs, or letters.


Families really have fascinating stories and a wonderful heritage to share with each other.....generation after generation.....I hope we can keep faithful to that task. Aunt Zelda believed in Jesus and was ready to go home to glory. She touched many lives.......and she will be fondly remembered by all who knew her.


I have included a couple of pictures taken July 11, 2005.






I have included a few pictures taken July 11, 2005.

Friday, March 20, 2009

Obama’s Tonight Show Comment is Offensive

I rarely send in a letter to the editor but a recent comment made by our President hit a nerve with me, so here is the letter I wrote.

President Obama made an appearance on a comedy show and when asked about his bowling score Obama bragged that he recently bowled a 129 on the white house alley, and then he said, “it’s like Special Olympics or something”. I am outraged by this comment and find it extremely offensive to my family and those who are dedicated to Special Olympics and the amazing outreach they have.

Some people may defend that he was just joking! Wake up America....this was not funny! In our family we have an amazing 24 year old special needs son who is a tremendous human being! He has participated in many Special Olympic sports (including bowling) for the past several years and he is so proud of his accomplishments, We have come to know many coaches and volunteers that serve this organization with their whole hearts and they are very respected and loved for their service and commitment.

Shame on the President of our United States of America for flippantly making a comment like this. I also disagree that he took the time to appear on a comedy show when we have a nation in economic crisis, the threat of terrorism, and total break down in the trust in our government. I pray God shows mercy on this country and that people will stay strong in their faith that God is in control, and NOT man! Thanks for reading this.

Here is the video link:

http://www.youtube.com/watch?v=ZXcgpZwsBPY&eurl=http%3A%2F%2Fshowhype%2Ecom%2Fvideo%2Fpresident%5Fobama%5Fs%5Fspecial%5Folympics%5Fcomment%5F03%5F19%5F09%2F&feature=player_embedded

Update: Evidently there was an apology http://www.foxnews.com/politics/first100days/2009/03/20/obama-apologizes-special-olympics-bowling-joke/..
But I have always been taught: "THINK BEFORE YOU SPEAK!"....So....I still find the flippant comment offensive!

Thursday, March 19, 2009

Our Grandchildren from GR!

Well....actually it's Jenison, not GR....but anyway:)
Heidi sent these pics today and I wanted to share them with you!
We are going to see them a week from Saturday.....can't wait!!!
If I could....I'd visit every week!! I hate to miss out on the kids growing up!!!

The twins....Kirsten and Rachelle
Rachelle.....I love this outfit!!

Standing pretty!


Kirsten Smiling for the camera

Big Brother Andrew
Jonny

Rachelle and Jon
Kirsten

Sing pretty!! Ahhh!

The Nichols Bunch:)

Wednesday, March 18, 2009

Joel's "24th" Birthday Celebration

I can't believe our youngest son just turned "24"!!! Joel celebrated his birthday March 17th with a good day at school and a dinner at the Timbers with family and friends! We are so proud of Joel and his accomplishments! Although Joel has faced many challenges in growing up....he has a good heart and lots of determination! he also has highly developed social skills :) where he can talk to anybody, make them smile, and is always eager to help others out!

We had a really fun time at dinner! Grandpa and Grandma Hopkins came from Onekama, Jason and Emily were here with their kids, and good family friends Bill, Mandy, and Lily joined him as well! We missed having Kurt and Heidi and their kids with us....but Kurt works weeknights! We are looking forward to going to Jenison at the end of the month!!!

I hope you enjoy these pics from the party! We had a great time! Thanks Emily for baking a cake for Joel.......it was really yummy....even if it did turn our teeth blue:) LOL

Have a blessed week everyone......and stop by often....now that spring is almost here I am quite motivated! Love to you all!

A new basketball
New t-shirt that says:
"I am Not Trying To Be Difficult"
"It comes Naturally"
Joel got a kick out of that:)
Blowing the candles out

Joel and our waitress Alicia.
She knew Joel from high school, and was
one of my former students.
The party celebrants:)
Isaac and Seth

Seth
Annabelle
Mandy, Madeline, and Lily
Emily , Mandy, and Madeline
My parents and me

Ken and Madeline
Mandy, Judy, Bill

Judy, Mandy, Lily
(we hadn't seen each other for 3 months!)
Emily and Grandpa Hopkins
Grandma Hopkins, Madeline and Jason
Grandpa Hopkins getting Madeline to smile:)
Andrew Shankland and Jason
While we were at the Timbers we ran into Andrew and Rebecca Shankland and their 5 month old daughter Lillian Sue Shankland. Jason and Andrew went to Heritage Christian together and were great friends growing up. Now here they are with their daughters who are less than one month apart.