January 22, 2016


I can't believe it has been 2 years since my last post! 2 years!

So much has happened and so many changes.
So I will fill you in on what has been happening in my world.

At the end of April 2014 my job of almost 14 years ended at the John Deere Dealership when it sold to a big Corporation Company.  It was a blessing and a struggle. The blessing is that I got the spring and summer to spend with my daughter before her wedding. I loved and cherish that time.

My daughter's wedding was the highlight of 2014!  It was on June 28 2014 on a ranch in between Bend & Sisters Oregon. The day was sunny with some white fluffy clouds. Not too hot not too cold. It didn’t go off without some drama in our house.

I struggle with my weight and years of on again off again prednisone treatments hasn’t helpped.  Finding a dress that I liked and a color that wasn’t blue per my daughter's request turned into a major stressor for me. But all things worked out and although I wasn’t completely comfortable in the final choice it is a beautiful dress.

Meanwhile back at the house the refrigerator died and then our hot water heater sprung a spraying leak. We came home from hours of dress fittings and wedding prepping to find floors and walls ruined. So we had  no floor in part of kitchen and laundry room just a big hole with plastic that my cat loved. She would go into the whole and under the house and bring me back her prize catches.  Good times!  In the end my kitchen looked new and my daughter's wedding was beautiful and God was presents was evident!

Photo's of the wedding are from Jessica Fisher Photography a friend of mine!
(editing was done by me with her approval)

Soon To Be Son In Law David Walking me to my Seat.

(Top) Brandie and her dad and my handsome Hubby Larry
during a prayer just before he gives her hand to David.
(Bottom) Brandie & David enjoying the day.
I didn't take any photo's at the wedding. I tend to get wrapped up in snapping photo's at events that I don't participate in the event.  I wanted to take it all in and not wrapped up with did I just miss a photo op.
Moving forward to the end of Summer I was still unemployed, still looking for work but still getting unemployment. Getting stressed but at the beginning of August I was offered a job at a call center for cell phones.
I was going to be selling cell phones & talk, text and data plans, billing support, and tech support.  I know nothing about troubleshooting a cell phone.
I didn't want this job. I had to take it I was on unemployment they recommended that I apply for this position.
The rules of unemployment says I can not turn down any jobs offered me.
I hated the idea of sitting at a desk for 8-10 hours a day being micro managed. My body doesn't go by HR schedules. But I gave it to God and Prayed everyday on my 30 min drive to work that I would have a positive attitude and had God's light shine through me on each and every call that came my way.
I knew from the get go that this was going to be a big challenge for me. I have a compromised immune system, and I have Crohn's like symptoms that has me running to the ladies room at the worst times possible. I told the interview committee my medicals needs, the hr department when they offered me the job and for the next nine months every week I would remind supervisors that I cannot control my bathroom needs.
(*after 40 years of trying it isn't gonna happen!*)
I felt from the beginning I was being set up to fail at this job.
Knowing you are in a position at a company that has a very strict attendance policy and turn over rate is high & hung over every ones head.
 We couldn't discuss situations or vent on breaks or lunches. We had to live the culture, happy smiling faces while on the campus or you will get a reprimand and disciplined. I ended up with a 10 hr 4 days a week shift. 
  Stress! Stress! Stress!
 Since the end of my one month training I was always on probation for not meeting my calls per hour requirements. Every time I had to log off the phone system to run to the bathroom it went against my calls per hour (aka cph). Except on my 3 ten min breaks or 30 min lunch.

 Then I was put on probation for attendance. I worked in a building with 600-800 employees. Supervisors turned a blind eye to those who were sick and shouldn't be at work even allowing them to have what
 I referred to a puke bucket next to their desks. 
My Behcet's disease was in full active mode by the end of January 2015. 
By February  I came down with a bad bug and hubby was in the middle of redoing our dinning room living room kids hallway floors with hardwood. Bad timing! (the floors turned out beautifull!)  
I had been on the job for over 6 weeks which qualified me for the Oregon Family Leave Act and my doctors quickly got the papers signed
and my job was safe for the medical attendance aspect. 

Week after week I would have status meetings because I was on probation for the cph issue and past attendance issues due to being sick a lot!
 I had almost given up on getting HR to listen to me by the time they did get me disability accommodations paper work for my doctors to fill out
 I was on my final probation period. And when I got it signed and back to HR they fired me for my cph probation & not improving during my probation.
While relieve that the call center nightmare was over, I felt like a failure. I got fired! I did everything I could to keep this job I disliked. I went in with a Godly spirit and smile every shift and got Kudo's from my customers, my customers except a few liked me!
My supervisor always told me I was great with my customers.
Even the mean, rude cranky ones!  
I just physically couldn't get over that one hurdle with the cph
because of my BEHCET's.  God's Plan, Gods timing, Gods in control!
Back tracking just a bit to share some special events of 2015.
I knew that we had been planning my trip to  Kansas to see Brandie & David graduate from Barclay College ( a Quaker Faith based college). I was worried that with all my missed time at work and medical leave there would be no way I would get the time off. But prayer works and I my supervisor advised me of a way to get the time off and using the one occurrence I had off.
Needles to say it was a quick trip to Kansas on Personal leave for 7 days. 
I only missed 3 work shifts thank to being off on Fridays, Sundays & Mondays.  
I needed that trip mentally, physically, spiritually, & emotionally. I love road trips quick or slow I love them. It gave me just the break I needed to be me. To enjoy God's creations and country. To experience fresh air outside of Central Oregon to be free from CPH's and probations, angry customers and be still in God presence in a car going 60-80 mph depending on the state we were in.
To reboot mentally, emotionally. To enjoy the joy of family.  GOD is Faithful.

David Speech at the Alumni Banquet

                                                             Brandie's Summa Cumme Laude speech at the graduation
David's Family
The right are David's Parents Tom & Kathy Freitas
& one of David's Sisters and her sweet family that live in Kansas
(Brain not working and I don't remember their names but will fix when brain returns I am so sorry!) .

Brandie's Family Strating in the middle front then right to left
Larry III, Larry Sr., Larry Jr, David, Brandie, ME, Iris, Liz and Bobby (from Indiana)
Celebrating the big day!
The couple will be staying in Kansas for a while longer, David is working on a second Bachelors and Brandie is going to be working on her Masters in Psychology.
Ok Back to my story!
I have been unemployed now since July 1 2015.  I have applied to hundreds of different jobs and came close to being employed again. 
But God has something planned for me. Still searching for work.
I took another quick trip back to Kansas this time John Curtis bought airplane tickets for Him and I. He wanted to do something to celebrate getting his High School Diploma and spend his 21st birthday with his sister. 
 he didn't get to go on the trip in April because he had to work.
 The trip went by fast but we got to spend wonderful quality time with Brandie and David and made lots of new memories. 

Strataga Kansas Underground Salt Mine

Greensburg Kansas Sunset

The Big Well Greensburg KS

 Fromme-Birney Round Barn

State Flower of Kansas

Kansas Firefighter Museum"
                                                        and Fallen Firefighter Memorial

Water Towers in Pratt KS

MT Hood from Airplane headed back to PDX.
MT. Jefferson is in the far back.
Other Highlights my sister Got Married on June 29 2015
My Uncle Wally &Aunt Midge and Uncle John & Aunt Jan came out from
 Wisconsin & Chicago IL
Left to right Aunt Jan, My Sister Pam, Uncle Wally, Aunt Midge and My Mom Ardys.
It was over a 100 degrees the two days we were there.

Rehearsal Dinner  R to Left
My Step Dad Bill, My Mom Ardys, Uncle John,  Aunt Jan
My niece Kristina and not sure who was in the green shirt.

Left to right Aunt Midge &  Uncle Wally

Left to right Aunt Midge, Nephew Justin, Uncle John and back ground are
Tony's (the Groom) Parents who's name I didn't get.
 I got to tag along with the photographer and snap some of my own photo's

Brides Maids are my Nieces Kristina and Stacie - Pam's Daughters
Walking Pam Down the Isle is Justin - Pam's Son
Best Man Mitchel - Tony's son.
July 1-30th we were running back and forth from Central Oregon to Marcola Oregon. My husband put down new flooring in his moms kitchen dinning room area remodeled the bathroom. I believe the subfloor is around 100 years old if not older. We ran into some interesting things.  July 4th we were in Marcola for the long weekend and I was woken up by the 4.2 magnitude earth quake
that shook the area on July 4th. I couldn't understand what my husband was doing to make the whole house shake so much. After a day of working on the bathroom and floors we went to my sisters house in Springfield for a picnic with her new family and my nieces and nephew and grand nephews. 
The end of October we re-did the bathroom floor in my moms house, put in a new shower stall and put in handrails for my stepdads safety. While there her roof leaked in the kitchen and in the middle of the storm at night my sweet hubby went up on the roof and did a make shift patch, and then did a temporary patch that should hold till spring. (We have had record breaking wet winter lots of rain and her roof hasn't leaked since the temp patch! She is very happy!)
So if your are keeping count my husband re-did 3 houses floors this year!
Just before Thanksgiving we went back over to Marcola & picked up Iris so she could spend Thanksgiving with us here in Central Oregon!  It was a blessing having her here. We talked, read books,  she sewed on Y0-Yo's for a quilt, I crocheted on my blanket!
  It snowed and snowed! By Dec 15th it was still cold and roads were icy and she stayed with us.
My sister in law Liz's mom passed away suddenly mid  December in Vancouver WA. We drove up there on Friday,  drove home on Sunday. Iris stayed with Liz and Bobby in Vancouver that week. We came back that Friday night and stayed thru the funeral services.  Liz's mom Cindy is missed deeply by me and our family. She had the best Forth Of July Celebrations I have ever attended. 
Sweet, Big Hearted woman she was!  Miss seeing her on facebook!
 Iris then came back to our house for the Christmas Holidays. What a wonderful time! 
It has been a long time since I spent so much time with my mother in law
 and I will cherish the memories.  We took her back home the second weekend of January 2016.
I have been slowly building my Photography Business Captured Milestones Photography
 these past two years. God has been faithful and provided paying clients when needed and supply opportunities for me to use my skills and serve HIS kingdom here on Earth thru volunteering at my church during special events taking photo's and volunteering at the Annual Community In The Park Event in Madras Oregon. What a blessing that has been.
  Flaring or not the first Saturday of August you will find me in the Park Rain or Shine (usually over 100 degrees) Snapping photo's for the last 5-6 years now.
So as you can see I was busy in 2015.
My health issues continue to be a problem. The intestinal issues, mouth ulcers and skin ulcers became unbearable again. My voice still goes horse all the time and I sound like I have a bad cold which I don't most of the time.
The pill form of Methotrexate wasn't being absorbed in my system so my new Rhumy. doctor switched me to once a week shots in February. The first shot was ok no problems but the more I give my self injections the longer and more the mental block. She also wanted me to have another colonoscopy
and rule out Crohn's once and for all. Not a happy camper.
The GI I ended up seeing was so sure I had Crohn's and not Behcet's. 
 I tried to tell him I had been down this roller coaster on to many times and I don't care what you call my auto immune disease these days just get me medications that help me feel normal
and get me off of the dreaded steroid Prednisone.
 I wasn't happy about having to have a colonoscopy again and I had been on Prednisone for 3 months so I knew that they weren't going to find much inflammation if any but doctors want to have their looksee's.
I prayed for God's Grace during this time.
I prayed for Healing and self control, my filtering was at its limits and was getting really short tempered thanks to all the prednisone.
 I prayed for a better/new job and financial stability.
But most of all I prayed for doctors to treat my symptoms not question my diagnosis. God was faithful!
I am not sure but I think I may have spouted off under anesthesia because the GI hasn't called me or returned my calls (like I said my filtering system to my mouth wasn't working and I was mad!) and this was the at the end of May. 
My Primary and Rheumy told me it was negative for Crohn's and very little inflammation was found. Treatment for ongoing symptoms was the shot once a week upped the Azathioprine dosage, tapered prednisone 
slowly to 5 mg then off it and every thing else stayed the same.
July right after I was let go from the call center my left eye became red swollen and very sore, I was completely off the prednisone finally then 'bam' Uveitis strikes.  Add another specialist to the mix: an ophthalmologist. Ok so I am now seeing a primary, rheumy, my GI and now ophthalmologist. Not having fun. Back on 60mg prednisone, unemployed, health insurance about to expire.
I'm at a breaking point. I didn't give up I lifted my head high and did what I needed to do to save my eye sight and defeat Behcet's. My ophthalmologist, suggested that I think about Remicade or Humira they are biological/chemo drugs used to treat auto immune diseases like Crohn's, RA, and Psoriasis. 
 I was on Remicade and a GI stopped it in 2010, I did find some relief from my symptoms with the Remicade infusions back then and frankly by now all
I want is to be back to normal. Good news came in and my unemployment insurance claim was approved so I would have some income coming in. 
God provided for us yet again.  My insurance at the call center stayed
active till the end of July which was a big blessing. I was still double covered thru the major part of my Behcet's flair. 
 My Rheumy left the area and her replacement wasn't going to be in the area until November. So from August to November I slowly tapered off the prednisone once again. I had to get monthly blood draws again now that I was taking injections of Methotrexate and by October my liver numbers started to climb, they Rheumy office was monitoring my situation thru PA's and the other Rheumy that I don't like, had me lower the dosage amount of the Methotrexate. by December my liver numbers were high again and so we discontinued the Methotrexate, and started the process to get my one insurance to approve the treatment plan. Since Behcet's is a rare auto immune disease that has a mind of it's own there is not set protocol for drug treatments and the drugs my new Rheumy (who is a blessing sent from God.) wants to try aren't prescribe for Behcet's normally.  Since I have been dealing with this diagnosis for 6 years now the regular drugs have been tried and documented that they weren't that effective for a normal quality of life except the Remicade witch I had good response with in the past. My new doctor pushed and pushed. 
I am now taking Humira every other week for Behcet's disease.
My second shot will be tomorrow morning. Not excited as the first shot stung.  I wasn't expecting that. At least the methotrexate shot didn't sting.  It's all good. I am looking forward to feeling normal again and I pray that Humira works just as well as the Remicade did.  My deductible is $100 a month (two dosages).
God is faithful again as Humira is getting me a pharmacy card to
help with my deductible and co-pays.  While I search and apply for jobs.
God has a plan and a perfect job just for me! I will wait on His timing.
So this pretty much catches everyone that reads this blog up on what my life has been like the last two years. I will try and post more frequently then every two years.  Here are the bible versus that has kept me strong
and guiding my thru my journey of life.
Jeremiah 29:11   I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.  (NIV)
Psalm 34:8     Taste and see that the LORD is good; blessed is the one who takes refuge in him. (NIV)
Proverbs 17:17 A friend loves at all times, and a brother is born for a time of adversity. (NIV)
               Joshua 1:7 “Be strong and very courageous. Be careful to obey all the law my servant Moses gave you;
do not turn from it to the right or to the left, that you may be successful wherever you go.
Romans 15:13 May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. (NIV)

Lamentations 3:22-23 22 Because of the LORD’s great love we are not consumed, for his compassions never fail.  23 They are new every morning; great is your faithfulness.
Romans 8:28 And we know that in all things God works for the good of those who love him, whoa have been called according to his purpose.     

I don't attend church regularly,
 I miss church, I miss my church family.
Why I don't attend regularly? I get asked that a lot. 
 My answer/excuse my immune system is compromised.
 I take drugs that suppress my ability to ward off illnesses. 
 I go when I feel it is safe for me to go.
 I hate being sick all the time! I catch everything and anything.
 Other reasons its easy not to go if you don't go regularly.  Before my husband moved to a different position in his job with OLCC.  Sundays was the only day I could count on to spend with him on a regular basis. I love going on Sunday road trips taking photo's and being with the two of the most important people in my life.
God and my husband.
 Now he is working Monday thru Friday 8am - 9pm
(so normal is around the corner I hope )
Just because I don't attend a church regularly doesn't mean I am a back slider. I feel closer to God this year then have in a long time. Why because I talk to him daily, I listen to His still small voice daily.  I seek scripture to meet me where I am to fill my spiritual needs especially when I am struggling
& I sing praise songs during my daily housekeeping
chores to stay in fellowship with GOD.
Don't follow my example:  fellowship with like minded believers is important. I miss it a lot. Follow God's calling on your heart.  Open you eyes, heart and soul to what God has in store for you.
 Believe in Him. He is faithful and delivers on all of His promises
in His timing not ours!
May God be your guiding light and fill all of your lives with many great blessings in 2016!
I am excited to see how 2016 turns out aren't you!?

1 comment:

  1. My friend and co-worker was recently diagnosed with neuro-Behçet's. That's how I ended up reading the FB page and came across your blog. Thanks for sharing about your life. You are a very strong person! I pray Gid provides for all your needs above and beyond what you can imagine in 2016!