Living With Scleroderma With a Smile

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Saturday, October 31, 2009

Jonny turned three :) Rachelle had a fever of 105:(


There was lots of excitement and stress in Kurt and Heidi's house yesterday. Jonny celebrated his 3rd birthday yesterday....and Rachelle spiked a high fever....going as high as 105. Heidi took her to the clinic she always goes to......and unfortunately her regular doctor wasn't there and she had to see another physician...who unfortunately was abrupt with her about Rachelle's condition...and basically sent her home and recommended cold packs to bring the fever down.

After a consult with a nurse and Heidi's Aunt Becky (who is also a nurse)...they knew in their hearts there had to be something more....so when Kurt got home from work they took Rachelle to DeVos children's hospital where Rachelle was diagnosed with bacterial pneumonia. http://www.emedicinehealth.com/bacterial_pneumonia/article_em.htm

Rachelle is doing somewhat better today...but it will take a few days to be back to normal. She is on a five day antibiotic...and should see improvement in a couple of days.

We had planned on taking a trip to GR today to celebrate Jonny's birthday...but due to the fever and illness...and me having an auto-immune disease...susceptible to bugs....we will visit another time!!

When they have pictures to share...I will pass them along on the blog!!

Additional requests:

Please continue to pray for our Mom,
Lois Hopkins...she is having some difficulties controlling the pain from the compression fractures...Linda went to see them Friday-Saturday. she is trying to help Mom find the right meds to help her. Sometimes pain can be so difficult to control..and it takes "trying this and that" until one finds the right blend.

Please pray for the sale of Kurt and Heidi's house. They have listed it with a realtor....and there have been a few people looking.

Thanks....and as always....we treasure your love and friendship!!

Thursday, October 29, 2009

End of October already!!!

It's been another busy 10 days in the lives of the Nichols!!!
I went down to Jenison to Kurt and Heidi's recently and helped with the grand kids while Heidi and her Mom, Carol, were at a Bible conference at the Grand Hotel...and Kurt was home...but works nights.
I had a wonderful time with everyone and am so thankful I could be able to do this!! The kids were so cute.....followed me everywhere I went..and listened to every silly song that Grandma could sing!!!
Mom is still on the road to recovery...but had a set back this week when she fell from her chair. The compression fractures will heal very slowly...and in the interim...mom is getting physical therapy, a nurse's aid, and visiting nurse for vitals/etc. Please continue to pray for Mom and Dad...as this has been quite a struggle for them...and requires alot of patience. Linda and I talk to them daily (several times) and Linda and Don were in Onekama last weekend as well.
Last Fri-Sat-Sunday...our church Rollins Christian Fellowship, held a crusade featuring the 'Stand Strength Team". The attendance was amazing....God really blessed....many people made first time decisions to follow Christ...plus many more re-dedicated their lives and service to Him!
Joel has struggled with a cold this week...but seems alot better today...Ken and I are doing well....with NO symptoms:)
I had the honor of interviewing with the National office of the Scleroderma Foundation this week via phone conference. The interview was an hour long and will be featured in an article to appear in the December issue of The Voice magazine:)
Ken took some pictures of me in the front yard by a tree for the article...and misc. other . We laughed alot as I said it felt like Senior pictures......and Ken said it WAS a picture of a Senior!!!
Me

Isaac practicing his piano lesson


Annabelle in Grandma's Scleroderma Foundation hat
Uncle Joel and Isaac in their
Stand Strength Team shirts.

Visit to Jenison

Andrew before he went to preschool
Jonny....turns three on October 30th
Kurt and the kids.
Heidi was at a "Win Some Women" conference
held at the Grand Hotel on Mackinaw Island.
More "Daddy and Kids"
Grandma and the darlins!!!
Rachelle holding her new purse
Kirsten and her "Dora" purse
Playing at the table with word puzzles.
We had to find something quiet to work on
while their daddy was sleeping!
Andrew and Jonny playing with the puzzles.
Kurt and the kids...We had such a nice time....
I'm glad I could help out with everything :)



Our first dining table/chairs was one my parents had, the second one we got 20 years ago and it survived two moves and "3 growing boys. .... Last Saturday our new dining set was delivered and will probably be our last!

It's got three leaves in it and expands to fit "Lots of us"!!

Tuesday, October 20, 2009

Recent Article from the National Scleroderma Foundation

We traveled to Washington DC recently to raise support for H.R. 2408 and S. 1545. here is an article that was online from the National Scleroderma foundation's website: http://www.scleroderma.org/news/news2009/news2009cap_hill.shtm

Thought I'd share it with you:)

Please continue to pray for Mom as her healing process begins for her compression fractures. Don and Linda will be in Onekama this next weekend.

Ken is taking me to Big Rapids tomorrow where Kurt and the kids will pick me up and take me back to Jenison for a couple of days! I am really looking forward to seeing everybody...and maybe even a little shopping with the kids! Heidi will be at a Christian Women's conference Wednesday and Thursday with her mom. I'm so glad I can help out in this way! I'll get lots of pics!!!! I always do!! LOL

Sunday, October 18, 2009

Hopkins Update #4

Mom is home and resting comfortably now. Linda left late Sunday afternoon.....Ken and I went to Onekama after church to help out.
Carelinc was at the house to set up oxygen for mom to use at night and during naps as needed. This is primarily for her congestive heart failure and comfort of breathing. Please pray that her compression fractures would heal quickly...and that she and dad will get the rest they need. Don and Linda will go to Onekama next weekend...and Ken and I will be available also.

If you live close by our parents and would like to help out....please give them a call first....I'm sure they would appreciate anything you can do to help out:) If you bring any food....mom is supposed to be on a "lower" salt diet...so keep that in mind.

Thanks for all of your well wishes and prayers....it has been a trying time for our parents...but we will monitor them closely and do everything we can for them!

Saturday, October 17, 2009

Hopkins Update #3

We met with the doctor at West Shore hospital today and discussed plans for Mom when she comes home on Sunday. They took an additional xray today to evaluate the lungs and make sure that they sound good. The pain from her compression fractures has improved, which has alot to do with the liquid (1 liter) being drained from her lung.

The doctor talked with us about a plan when Mom comes home, which will include a visiting nurse/home health care for awhile until she makes significant improvement. Because they live in a tri-level home (with NO main floor bathroom) they will provide her with a commode....to lessen her need to walk up the stairs all the time.

I came home this afternoon after we met with the doctor....Linda is staying one more night to be with Dad and help bring Mom home on Sunday. Ken and I will go to Onekama Sunday after church to help them get settled in/organize medicine....and get settled in for the coming week. We are also going to provide them with names and numbers of friends in Onekama that they can call if they have a need.

We are so thankful for the many emails we received from people praying for them....and wondering what they can do to help. Mark Ward came over this afternoon and filled their bird feeders...and friends Ron and Nan, and Dan and Marlene visited at the hospital. Linda and I were so glad to be able to be there together with our folks...and like Dad says "Here we are....just the 4 of us again".

I always am so excited to see how God works in situations like these....how He provides comfort, special people, and just the right timing!! When the ambulance arrived at the house Friday morning it was there within ten minutes of the 911 call. I didn't feel that I was able to help Mom down the stairs...and Dad was concerned about the compression fractures and bringing her down the stairs.
So....."Sclero-woman" and "super Dad" opted out of this and left it to the pros. well....lo and behold....I knew two of the pros...one of whom I graduated from Onekama high School with back in 1973!! Then when we arrived at the hospital to check Mom in....the woman that runs the main switchboard/check in area was one of my BEST friends from high school!!! Sandi and I just hugged and hugged......and all of the memories and special times we shared just flooded my brain!!!! Sandi was like a daughter to our folks...so it was very calming to Dad and I as we arrived!


Later in the afternoon when the dietitian arrived to Mom's room to order her supper...it was Sandi's sister Pam!! Pam is just like family too....so again there was another special person God put in our path!! The nurses were all great to Mom and made our family as comfortable as possible! God bless those who work in health care.......they are precious:)

Just before I left on Saturday, I stopped by the nurses station briefly..and our conversation turned to scleroderma (hmmm....how did that happen?) Anyway....I used it as a "teachable" moment. I was surprised to find that only 1 out of the 6 nurses at the station were familiar with the disease. I shared a little bit of information....but mostly shared by the example of my skin! I walked out of the hospital with DETERMINATION......that before the end of this year.....I want to share my story and the impact of this disease with as many health care personnel as possible! Okay....so I may not be teaching in the classroom and directing choirs...but I am still a teacher at heart and the doctors offices/hospitals/etc. are my new classroom!! Good night:)

Hopkins Update #2

Mom had a pretty restful night...we are waiting on the doctor to visit this morning...Dad and Linda went down early to West Shore...I slept in and will join them soon. Made some phone calls this a.m. Trying to figure out our next step in caring for Mom when she is released from the hospital. Thanks soooo much for your prayers!!! We feel them!! Will update this afternoon:)

Friday, October 16, 2009

Hopkins Update

Our Mom, Lois Hopkins was admitted to the hospital this morning with breathing problems, issues with pain from her 2 compression fractures, and general discomfort. This afternoon they did a procedure to remove 1 liter of fluid from her lungs....which should relieve the struggle to breathe.
Linda (my sister) and I are able to be here and stay overnight to help out...and keep Mom and Dad company. I came to Onekama on Thursday evening...and I'm glad I did as I was able to help out with Mom in the middle of the night so Dad could get some much needed rest!

Now that Linda is here....I brought Dad home for some rest (Me too!) and then we will spend some time together with Mom this evening. They are still running tests and evaluating here condition....but having the liquid drained was alot of relief. Please pray that they would find the right combination of pain meds....that don't leave her sedated so much....but do relieve the pain! We are thanking God for safe journey to Onekama...that we can be together for Mom...and that Dad gets some much needed rest as he continues to take care of his beloved wife of "64" years.

We have lots of things to talk over/organize/and generally help outwith....Please pray that these decisions would go smoothly.

Tuesday, October 13, 2009

Most of you know that Ken and I just returned from a trip to Washington DC where we had the privilege of meeting with over 15 legislative staff members rallying for two bills before the House and Senate. We traveled with the Executive Director of the Michigan Chapter of the Scleroderma Foundation and met up with 50 others from across the United States.

Our purpose was to rally get co-sponsorship for bills H.R. 2408 and S. 1545 called “The Scleroderma Research And Awareness Act”. By the time we left Washington we were up to 59 co-sponsors in the House and 4 co-sponsors from the Senate. These are non partisan bills.

I am writing this to all of you who follow our blog. I know that you are aware that I have the disease Scleroderma but I do not know if you are aware of the pending bills.

We have gained the co-sponsorships of Rep. Pete Hoekstra and Senator Debbie Stabenow but not Senator Carl Levin. That is why I am writing to you for your help! I believe that Senator Levin will vote yes if it comes to the Senate floor, but his Legislative Assistant Kristina Ko said he would not co-sponsor. We need Senator Levin’s co-sponsorship of this critically important bill to get it to a vote in the Senate!!!

I am asking you to please call Senator Levin’s office in Washington at (202)224-6221 or email him at http://levin.senate.gov/contact/ and ask him to please reconsider co-sponsoring S. 1585. Let them know that a friend of yours who has scleroderma recently met with Ms. Kristina Ko and that you were hoping they will re-consider their position.
You can tell them you are familiar with scleroderma and that you want to see funding increased. The best days to call are Tuesday/Wednesday/Thursday 8:30-6:00.

I have a copy of the bill if you would like to read it! I'll just scan and send it! Please email me at nichols@wildblue.net or call me at 775-8446 if you have any questions. I invite you to join Ken and me in this effort but certainly understand if for certain reasons you are unable to. Your call can make a difference!!!! Thank you immensely for taking the time to read this and please pass it along to others who you know who may be interested.

Today was quite the day!! On Tuesdays I am attending a Bible study at First Baptist Church in Cadillac and we are studying the book of Esther.
It is a powerful study and God is teaching me so much!!! The video bible study is led by Beth Moore....
http://www.lproof.org/aboutus/bethmoore/default.htm
Check out her website.....she is an outstanding Bible teacher with lots of resources!

Also this morning......in the matter of prayer request:
  • Please pray for our Mom, Lois Hopkins who has suffered a compression fracture in her back (actually i think she has 2 compression fractures) She has been in "gradually getting worse" pain since last Wednesday. She went to her cancer doctor today and had several xrays and a ct scan.....praise God...there was no cancer! but the fractures are some of the worst pain a person can suffer. prayerfully...and hopefully in the next few days she will improve!
  • Please pray for Ralph Trowbridge who in is the hospital undergoing several tests....they really don't know what is going on....but God does!
  • Joel has been having a couple of rough days at school......mostly behavior...and we're not sure why he sometimes acts the way he does :( But we love him...and keep as much structure for him at home as possible! Thankfully when we were gone to Washington
    he was great for Jason and Emily!
  • Please pray for the sale of Kurt and Heidi's home in Jenison. They will be moving to Kenosha, Wisconsin in a few months and would really like to see their house sold before they move:)

As always.....thank you for following our blog....and feel free to share it with people you know!

Sunday, October 11, 2009

Our Grandson Isaac turned "6"

Happy Birthday to Isaac Nichols who turned 6 years old last week!!!
We can't believe how time has flown by.....already Isaac is in Kindegarten at Heritage Christian, can read, can write, can ride a bike without training wheels, and started piano lessons with Grandma Judy.
I told him in ten more years he could drive me to my doctor's appointment and mow Grandpa's lawn!!! He was all for that!!
Enjoy the pics from his early years....which he is still in!!LOL
October 2008.....5 years old

Isaac at 2 years old...October 2005
Isaac with his train cake at 3 years old

First birthday
Oct. 8th, 2004









Isaac at four:)
October 2007






Isaac at three years old...
Oct. 2006
I love that little wrinkled up nose!









Saturday, October 10, 2009

Raising Awareness for Scleroderma

Our team in Washington
The "Washington" look:)

Kris, Judy, Laura, Paula






We arrived home safely on Friday, Oct. 9th after a three day visit to Washington DC . The purpose of our trip was to obtain co-sponsorship for two bills that will fund research and raise awareness of the disease Scleroderma. We traveled with Laura Dyas, the Executive Director of the Michigan Chapter of the Scleroderma Foundation, along with over 45 other people from various states.

Our schedule was very busy. On Wednesday we met with the staff members from several Senator's offices and on Thursday we met with staff members from Congressional offices. Each meeting was 15-20 minutes long and the agenda was to tell our personal stories about scleroderma and talk about the bill itself. I was shocked at how many staffers had never heard of scleroderma nor had seen someone with the disease. I shook everyone's hand that I met....and in some cases...the staff member even felt the hard skin on my arms.

The most emotional moment for me and the team was with was when Congressmen Mark Schauer from Jackson personally attended our meeting pledging his commitment to co-sponsor the bill....right then and there!!!! He was a very gracious man....with a big heart for people!!!
We all sat there with tear-filled eyes as he shared his concern!!

He joins the following Congressmen from Michigan in co-sponsorship:
H.R. 2408...there are many others from other states...but I have only listed Michigan.

Rep. Vernon Ehlers (Mi) Sponsor of the bill (Mi-3)
Rep. Carolyn Kilpatrick (Mi-13)
Rep. Gary C. Peters (Mi-9)
Rep. Fred Upton (Mi -6)
Rep. Dave Camp (Mi-4)
Rep. John Conyers (Mi-14)
Rep. Peter Hoekstra (Mi-2)
Rep. Dale Kildee (Mi-5)
Rep. Candice Miller (Mi-10)
Rep. Thaddeus McCotter (Mi-11)

Senators co-sponsoring S. 1545
Debbie Stabeonow (yes)
Carl Levin (gave us a meeting)
Bart Stupak (would not give us a meeting)

I believe after the trip we were up to 59 congressional co-sponsors and 4 senate. I have only listed those from Michigan. This is not a partisan bill and it has gained support from both sides of the aisle. The bill S. 1545 was introduced by Senator Kirsten Gillibrand of New York and the bill H.R. 2408 was sponsored by Rep. Lois Capps of California.

I am very disappointed by the offices of Carl Levin and Bart Stupak for refusal to sign on to co-sponsorship. If you have any pull in any of those offices....I will get back to you with a way that you can help!

While we in Washington we had the joy of meeting up with Ken's first cousin Rebecca Yount. We went to dinner with Becky and Darryl the first night we were in town and had a wonderful visit! The next two days were spent in meetings.....and for me mostly in a wheel chair being pushed by Ken so we could get to meetings quick and ON TIME!!! There was so much walking....I would have never been able to walk the distances required of us!

On the interesting side....I watch alot of FOX News so I am quite familiar with politician's faces.....so when Ken was wheeling me down a corridor on Capitol Hill....I turned to a gentlemen and said "Hello Mr. Frank!"....at which point "Barney" turned and said "Hello". When we stopped for lunch in the congressional cafeteria and I stopped and shook hands with another gentlemen, introducing myself and talking briefly about our purpose in DC and the Scleroderma Research and Awareness Act.....and Mr. Dennis Kuscinich responded..."I am aware of that bill....I support it....and someone on my staff has that disease".

We met so many precious people on that trip who were rallying for support......and we made several new friends. Personally I have not met too many people that share my disease....so it was very special to me to connect with them. Suddenly I didn't feel so alone with my "curved fingers....tight skin and hands!" Everyone's story is different...and they have the disease in many varying degrees. I know I will stay in contact with these "courageous" friends...and I will plan on attending the National Scleroderma Foundation Annual Conference next year in Boston. My hope is that my sister Linda will be able to go with me....as it is a tremendous and informative Conference with so much to learn! Linda is very keen when it comes to medical issues and I know together we could benefit from the conference.

I am so thankful that Ken could take vacation days to go with me, that Jason and Emily moved into our house with the "4" children to take care of Joel, and that we had the prayers and well wishes from so many friends and family! We are so blessed to know that we have you all to count on!!
Thank you for your support...
God gave us a safe journey to and from Washington...and I know He will continue to watch over us....direct our days...and show us ways we can continue to serve Him...even in the midst of trials!

Wednesday, October 7, 2009

Arrived safely...one day of meeting down...one to go!!

What a tremendous experience it is to be in Washington DC and share my personal story with senate and Congressional office on Capital Hill. I will share much more when we are home...but as of today 56 congressional leaders and 4 senators have signed the bills to co-sponsor legislation that would fund additional research and awareness for the disease scleroderma. We have met many wonderful people....I think I am on overload with information!!! Check back soon!

Friday, October 2, 2009

Washington DC....Here we come


Well I can't believe that October has arrived already an we are less than a week from heading to Washington DC. Several weeks ago I was asked by the Director of the Scleroderma Foundation of Michigan to accompany her on a trip to Washington DC to rally support for two bills that would allocate funding for scleroderma research and awareness. Not only would these bills benefit scleroderma research...but they would help ALL auto immune diseases.


Well since that invitation....it's not just me that will going...but Ken too!! I am so thankful to the foundation for allowing Ken to come along!!!! I really dislike going anywhere without him......so together we are able to make this adventure!!


On the schedule as of today we will be meeting with the following Senators:




Senator Baldwin and Senator Ryan


Congressmen:





As always....anything is subject to change....but I'll know more when we are there.


Please pray for our trip! We will be flying from TC to Detroit, then on to DC on October 6. The majority of the meetings will occur on Wednesday, Oct.7 and Thursday Oct. 8. We will fly back to Detroit Thursday evening...then to TC Friday morning. Please pray that will we will be articulate as to the need for support on these two bills. We have never spoken face to face with our elected officials...other than locally....so we are excited to be given this opportunity.


Please pray for Jason and Emily as they care for Joel while we are gone. We truly appreciate their willingness to do this for us. Joel enjoys having them here....and likes to see "us" get away!! LOL


I am hoping to take lots of pictures and report back to you as soon as possible.....hopefully during the trip! Once again....thanks for your love and prayer support!!! We want to honor God on this trip...so please pray for moments to testify to His goodness....and His amazing grace!!


I can do All things through Christ who strengthens me!!
New News!!!
For all you bloggers out there....our daughter-in-law has begun a new blog that I'm sure you'll love to follow!!!! Here is the link:
Emily is a 90% stay at home Mom....who works one day a week at Wexford Jewelers in Cadillac. http://www.wexfordjewelers.com/
I have the privilege of having two of their children (Isaac and Annabelle) on Thursdays while Emily works. Grandma Karen Roncari
http://allaprimalady.blogspot.com/ takes care of baby Madeline and Seth is at Heritage Christian pre-school on Thursdays. Emily has developed quite the gift for couponing.....so for all of you out there who are looking to save in your budget...this is the spot for you.