Living With Scleroderma With a Smile

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Thursday, July 31, 2008

Joel: Pics from Camp




Joel went to the Christian Horizon's summer camp in Rodney, Mi at Cran-Hill Ranch.
Ken took him down Sunday afternoon and picked him up Wednesday. It was an abbreviated week......but that's okay:) Here are some pictures from the week. In addition to horseback riding they went canoeing, had a cookout, Bible time with verses, arts and crafts, and relaxing.
This was the second camp that Joel attended this summer....the first was at Kettenun Center in Tustin, Mi.


The nurse's son riding horses

Joel and Shawn (good friend from Rockford)


Joel and his "little buddy"



Camp nurse and her daughter






Cowboy Joel.......for a guy that's used to riding alone, I'm sure this was a little uneventful.
He did say it was a quarter horse!!

Tuesday, July 29, 2008

Promised pics this time so here they are!!

We had lots of company on Sunday afternoon. Ken's sister Pat and brother-in-law Dave are in Michigan this summer (Florida in the winter)...so they came over along with their daughter (our niece) Deb, her husband Dan, and their kids Taylor and Makena (all thy way from California!!)
In addition Ken's sister Jeanne and her husband Les, their daughter-in-law Joy (Aaron's wife), their son Justin(our nephew), his friend Traci, and his kids Isaac and Devon Housler.

We had such a nice time visiting....also munching on Jeanne's blueberry dessert.....yum!!!
Thank you Jeanne1

Makena really enjoyed petting and brushing Molly! She is as much of a horse lover as I am....so I really enjoyed watching her with Molly. Justin's kids went swimming, as did Makena and they had a fun time. I think the water temp was around 80 degrees...plus the sun was shining.

Taylor, Makena, and I took the Rhino 4 X 4 for a spin around the property and just enjoyed each other's company! We don't see Deb, Dan and the kids very often....and we don't get out to California.....so this was an extra special visit.

I am so thankful for our family and extended family! It is such a treat to spend time together, laugh together, and pray together. Thanks everyone for coming!






Dave, Ken, Pat


Justin and Les taking time out for a little swing




Ken, Judy, Pat, Dave



Our dogs checking out the "California Pooch". This is Dan and Deb's dog "Roxie". Our dogs were quite interested (nosey) until the little half pint growled at them and they both cleared out!! It was actually pretty funny!




Joy, Jeanne, Justin and Traci out by the pool.
Isaac,and Devon were enjoying the warm water!

Justin's sporty ride

Nephew Justin, Traci, Isaac and Devon Housler
on Sunday afternoon.
On Monday...my sister Linda, niece Andrea, and great-nephew Elliott
stopped to see us on the way home from Onekama.
Ken fixed a wonderful dinner for us and we had a great time visiting
and playing with baby Elliott....now 2 months old

Saturday, July 26, 2008

Ups and Downs ......Highs and Lows

This was a peculiar week and I wasn't quite sure how to share my info with you.....so I decided to basically categorize it by my Ups and Downs.....my Highs and Lows. I start with the downs so you can see that the ups win!!!!!

Here are the lows

1. I was denied for the second time from MESSA regarding the at home narrow band UVB light therapy equipment. Their answer is that it does not meet the criteria of my plan coverage, and there is not enough research supporting the success rate or effectiveness of this type of treatment.

2. My new auto-immune suppressant drug called Cellcept is not agreeing with me as well as Methotrexate did. I am having more "flare ups".....and need to discuss this with my specialist.
Side effects of this med seem to be more evident than Methotrexate.

3. My hemoglobin is low (for a woman my age). It has been running around 9.4, 9.6, and most recently 9.2 The normal range is 13-14. No wonder I feel more fatigued......an option is to get two units of blood if I go below 9.

4. I was in the emergency room Thursday from 2:00 in the afternoon until 10:00 at night.
I'll spare you the details!!!! But in the end....no pun intended...I will need to have a colonoscopy to identify the problem.


5. My lowest low this week was when they had to draw blood at emergency...and insert an IV.
Ouch, cry, squeeze Ken's hand, cry some more(not real loud....just lots of tears), squeeze harder, complain, cry, try to relax. So after all of that, they never did get any blood...due to my thickened, hard skin.....but they did insert a needle into my right arm, just below the shoulder and were able to draw just enough to get a CBC (complete blood count).Everyone was so nice to me and apologetic.......I don't blame them......actually I don't blame anyone:)....this is how it is.

Thankfully......there is one very special friend that works in the lab who can draw my blood and get it on the first attempt! Although she can't see/find the vein...she knows exactly where to go in and at what angle to go in at. Now, I will only schedule my blood work when Penny is working!





Here are the highs

1. My hand therapy is continuing.....and I am seeing more softening in the elbow area of my arm. As time goes on we are looking for more softening of the forearm, wrists, and hands.


2. My little "medical emergency" on Thursday happened while I was at Jason and Emily's. Emily was an immediate help to me and I was thankful i was not alone. Thank you Emily!

3. I am so thankful that I can call on our sons and daughter-in laws, along with family and friends to pray immediately when my health takes odd turns. Thank you Kurt and Heidi, Jason and Emily, Mom and Dad, Ron and Carol, and Rollins Christian Fellowship, and our many friends.

4.Even with my low energy....I was able to walk pretty well this week.

5. While in the hospital....I knew many of the medical staff...and while waiting to be seen by the emergency Dr., my occupational therapist Ilia Arnold, came over to the hospital and worked with my hands.....and prayed for us. Thank you Ilia!!!!

6. While in the waiting room I saw my friend Bonnie Liabenow and their son Jordan (former student). It was great to see them and chat during our long wait. (the emergency room was packed that day) Thank you Bonnie and Jordan!!!!

7. While in the treatment room, and just after Ken stepped out for a minute, my friends s Amy and Paul Bizzigotti just happened to be in the emergency room as well and they stopped by to see me and stayed while Ken was gone. Thank you Amy and Paul!!!!

8. Around 9:00 p.m. Ken had to leave to pick up Joel to take him home for the evening, let the dogs out, and get Joel settled in for bed. Jonathan Cooper came to the house to stay with Joel so Ken could go back to the hospital. Thank you Jonathan!!!
I was a little anxious about being alone, so we called our friend Janet Neyer, and she came to emergency and sat with me until Ken came back. Thank you Janet!!!! (glad you didn't get a speeding ticket:)

9.During the week I had sweet reunions on the phone or in person with the following people:
Lauren Hagerman, Sister in-law Pat and Brother in-law Dave Bos, Sarah and Rachel Lamphere, Justin Scott(Heidi's brother), Bob, Shirley, and Jason Taylor....plus Michelle Baum....and her kids.

So......there it is.....The highs outweigh the lows! You have to look at the bright side of situations and find the blessings in things instead of doom and gloom. I know I could easily get discouraged and defeated....But I always remember that God is bigger than any of my problems, I am faced with......He is in control.......He knows the beginning from the end....He IS the Alpha and Omega...the beginning and the end!!! Thank you once again for your continued love, friendship, and prayer support. Be thankful for every day of your life.

P.S. Thank you David for being flexible with Ken's schedule so he could be with me!

Sunday, July 20, 2008

Something To Share With You...........

Last December I joined a support group/chat board for people with "scleroderma". http://scleroderma.org/
I have never met any of these folks face to face, nor have I talked with them on the phone. My normal routine is to read the posts, learn more about what others are going through...and occasionally post a question or poem. Well, this past week one of the board members has become quite ill with her condition, and hospice has been called in to assist. "Sadie" has a great attitude and has battled this disease courageously. I have read her posts and updates and my heart was lifted because of her sweet personality as she prepares to go home to Jesus. So from the inspiration of God, and the desire to share something with this woman.....these words rolled off from my pen yesterday afternoon. I pray this poem/also a song, finds a place in your heart too......and ultimately glorifies God.
“Jesus Is There”

Where do I go when my heart is breaking?
Who do I run to when life isn’t fair?
Who do I turn to when my voice is crying?
I go to the cross and Jesus is there.

Jesus is there to heal the wounded
Follow his footsteps down this weary road.
Jesus is there in your pain and your sorrow
Jesus is there to carry your load

He will surround you with joy and laughter
Right on the days when things are falling apart
Jesus will calm all your fears and your worries
You are His child when you give Him your heart.

Jesus is there to heal the wounded
Follow his footsteps down this weary road.
Jesus is there in your pain and your sorrow
Jesus is there to carry your load


Do not be anxious for those things around you
are fleeting and fading from this fragile earth
Keep your eyes fixed upon your Father most holy,
His promise is heaven, for you a new birth.

By Judy Nichols 7/19/08

Friday, July 18, 2008

Bits and Pieces From This Past Week....

Last Sunday evening we had the joy of reuniting with some friends who we hadn't seen in 25 years. This is Randy and Cathy Hines ....Randy is a former youth pastor at Temple Hill Baptist Church in Cadillac. Ken and I were youth sponsors when Randy served as Pastor. We were around 25 or 26 when we helped out. Randy and Cathy were in town for Temple Hill's 125th anniversary. We were so glad we had a chance to see them....and spend time with them over at Steve and Sue Kuhn's. We had such a good time..and picked right up where we left off 25 years ago. Thanks Steve and Sue for the hospitality!!!!
Ken, Judy, Cathy, Randy

Randy, Cathy, Sue, and Steve


Back row: Cheryl, Lisa, Cathy
Front: Judy, Jolyn, Sue




On Tuesday morning Ken left for a business trip for 4 days. I felt blessed having lots of company and great care while he was gone. On Tuesday, my parents came for the day and spent the night. They also took me to Mercy Rehab for my therapy and were able to meet my therapists and watch my routine. On Wednesday, Jason, Emily and the kids moved in with me until Friday. It was wonderful having them here!!! Each morning the kids crawled in bed with me for about 1/2 hour.....what fun! Uncle Joel stayed overnight in our travel trailer....and the rest of us were in the house. Thank you Jason and Em for the great meals...and helping me soooo much while Dad was out of town!



Ken brought the old swingset frame up to the backyard..
.and put new swings on it...the kids had a blast.....Jason too







Annabelle taking a sniff of our morning glory's



Thursday morning around 8:00 a.m. we had almost 150+cyclists ride by our home...At the time the weather was beautiful and sunny....but within an hour it turned to lightening, thunder, and heavy rains. I sure hope the folks riding were okay....there's not much place for cover.




Isaac waived at every cyclist...and they all waived back..

One lady even told him "You have a cool bike!!!"





Jason and Seth went outside in the rain to get our mail....
look at Seth's bare feet...it was a warm rain "I'm singing in the rain.....just singing in the rain"















When Isaac was here....all three days he worked on his homeschooling. At almost 5 years old.... he loves to learn. He did phonics, math, and science.






My sister Linda sent me an updated picture of their grandson Elliott (Andrea and Clint Hoagland) who is just about 2 months old (born May 25th). What a sweetheart!

Monday, July 14, 2008

A Dog Named Mattie


Part of living on a small farm has been the opportunity to raise different animals over the past 15 years. We have had chickens, cows, rabbits, pigs, horses, cats, and dogs. Along with raising these animals has been the joy of watching new birth, and the sadness of death......all of which we have experienced several times, It never is easy when one must make "end of life" decisions about an animal......but today was one of those difficult days.



Our dog Mattie, affectionately called "Matilda", or "Mattalee"....has been failing in health for the past several months...i.e. weight loss, no appetite, low energy. Last night Ken and I concluded that she should not suffer....and we made the decision to have her humanely euthanized.

Mattie was almost 11 years old and probably the best "barn dog" we ever had. She was so good at keeping the horses from pawing at the gaits......and all you would have to say is "Mattie, get that horse.!".......and she was right there nipping at heels. She seemed quite proud of herself too.....always wagging that tail and bounding off to the next challenge!!!

We truly enjoyed Mattie, and so did our kids and grand kids. If you stared at her long enough she would cheerfully bark at you and shake her head back and forth...while a twinkle in her eyes.
I will keep those memories always.

So for you animal lovers out there.....I know you understand this bond....and many of you have most likely crossed this bridge. Mattie was a mutt.......saved from the pound.....but had a very full doggie life . So today, once again,
I cried.......for Mattie........
(Ken cried too but won't admit it)

Thank you Chelsea Lewis for taking her in for us and being such a sweet person, and to Dr. Harrison from Airport Animal Clinic for being such a compassionate vet.








Sunday, July 13, 2008

The Nichols Overnight Campout

Once a year as a family we get together for an camp out on the back of our 55 acres. Events of the day normally include swimming, enjoying a delicious supper, play time outside, then back to the woods where we camp, ride the Rhino (4 X 4 utility) enjoy a fire with s'mores, and end the evening with fireworks over an open field out back. Then to bed everyone goes....hopefully sleeps....then on Saturday morning we enjoy a big breakfast.....which had to be inside this year due to rain. After breakfast it's just relaxing and visiting until lunch.....when we indulge ourselves again.....have more outdoor playtime....then pack up to go our separate ways. As the kids get older, we are hoping to turn this into two nights of camping....but right now...with seven children under the age of 5....this is the best schedule! We had lots of laugh and really enjoyed our time together. Ken and I feel very blessed that we can spend this time with our sons and their families.....these are memories to cherish the rest of our lives.

To see last year's campout click here: http://kenandjudynichols.blogspot.com/2007/06/pool-time-and-camping-out-back-we-truly.html





The family time in the pool
I was the official photographer for the day...
so I didn't venture into the water





Seth and Emily

Jason and Annabelle

Uncle Joel piggy-backing Isaac
Isaac, Kurt, and Andrew




Aunt Heidi and Annabelle

Kurt and Heidi


Andrew lounging around




Grandpa and Seth having a battle of the water gun and net




The twins in their swimsuits




Kurt and Rachelle "pouty faces"




Jason and Annabelle





Isaac and Seth......warming up....the pool was warmer
than sitting out in the breeze.



Our feast.....we never seem to lack for good food.



Our dogs drooling over Ken's barbecued ribs



Jason and Joel shooting hoops





Isaac taking Jonny for a ride on the Gator



Jason, Seth, and Annabelle after supper




Isaac





Uncle Joel and Jonny after supper



Seth and Rachelle just before we went to the back of the property




Uncle Joel playing Frisbee with the boys




Heidi and I, Isaac and Jonny





Seth and Andrew relaxing



Andrew running around the campsite




Our camp site included two tents and a trailer.
Kurt and Heidi and kids all slept in their new family
tent. Jason and Em opted for the trailer.....Joel used his tent...
and Ken and I slept at the "Nichols Bed and Breakfast" (our house)



Kurt and Heidi handing out glow rings for all of us.
If it would have been completely dark we would have
looked like aliens landing. Even Ken had two glow bands around his head!!


Big boys and their sparklers
Aunt Emily and Kirsten snuggled by the fire



Jonny and Andrew watching Grandpa's fireworks




Jason and Emily enjoying the fireworks
A parting picture of Friday night




Saturday morning the boys all got a bath....
yikes the water was murky when they were done!!
It's a good thing we have a big tub...they won't all fit in it much longer.



Heidi reading to Andrew....while Jonny is fast asleep on the couch,
and the girls are just rolling around!
Jonny was the last child to bed on Friday night....11:30 p.m.

Here are some parting shots of the grand kids for the day before everyone went home.
I've included the b-days and year for fun!






Isaac 10/09/03




Andrew 01/12/05




Seth 07/28/05




Jonny 10/30/ 06






Annabelle 03/29/07 Rachelle and Kirsten 12/24/07