It’s been three MONTHS since my last update! On June 21, 2023, I posted Life’s Journey #16 – New Meds / New Challenges to share with you my choice to try a new drug for my autoimmune disease. I can’t believe it has been that long! Today was my first appointment with my doctor after making the change.
The GOOD NEWS!
My bloodwork is good!
My blisters are smaller and fewer overall!
I am seeing improvement!!
The NOT-SO-GOOD NEWS!
I am experiencing joint pain…knees, hips, hands, wrists, elbows, and shoulders. So much so that I am not able to do normal activities such as kayaking, jogging, mowing the yard (oh, darn), and even opening cans and jars!
I have to stop the drug for one month to determine if the joint pain is related to the drug.
I may have relapses during this break on the drug.
If it is not due to the drug then I have to see another specialist to determine if I have developed another autoimmune malady.
Our decision to stop the drug for one month brings mixed emotions for me. It is disappointing because I feel like I am gradually getting better by being on it. My blisters are fewer and smaller than they have been up to this point. BUT I am encouraged that I have a doctor that is cautious and concerned for my overall well-being. She does NOT want to trade one area of pain with another area of pain. She feels this is our best choice to truly determine if the two are related.
My WIN in this TRIAL: We have a path forward!
Stop for one month.
If pain subsides, then we switch drugs.
If pain remains, then we schedule appointment with a Rheumatologist for additional evaluation.
I am so grateful for the support of my family, my doctor, my friends, and especially my faith that God has this in His control. He knows what I am going through, and He knows what is ahead for me to learn, to be patient, and to grow in this experience.
Thank you, Jesus, for your love and guidance and strength in the midst of what is unknown for me, BUT clearly known by you. I trust you to bring me through this! Thank you for the Truth of your Word from Psalms:
Let all that I am praise the Lord; may I never forget the good things he does for me. He forgives all my sins and heals all my diseases. He redeems me from death and crowns me with love and tender mercies. He fills my life with good things. My youth is renewed like the eagle’s!
I would love to support you, my Sweet Friend, with any trials you may be having. Please share in the Comments below how I may best pray for you. If you are not comfortable sharing publicly, then you may email me at stacy@stacyturley.com.
Last week was a big week for Pat (my dear husband) and I. We had a video call with my doctor to determine if this is the right time to move on to a new drug…a stronger treatment for my autoimmune disease Cicatricial Pemphigoid. I have been having flare-ups for weeks. (Let’s be honest…I have been having flare-ups for about 2 years but I keep trying to convince myself that I am better.) I have delayed this change for at least the last 9 months because I did not want to be on this drug, and I did not want the consequences that may develop.
I have been living in fear of the unknown, the lack of control, and the possible side effects. I do not want to live in fear anymore! I want to be the victor not the victim!! Read more on Fighting Fear HERE!) I have been more comfortable with “knowing” the pain and consequences of my current state and current drugs than “not knowing” what my pain and consequences would be on a new drug. Unfortunately, to remain in the status quo means that I am always in pain which is hard for me and my loved ones to witness. I am ready to make a change. It is time for me to kick fear out of the driver’s seat of my life and move forward with an opportunity to improve and heal.
So here we go!! I will remain on all my current treatment but add to it another drug called mycophenolate mofetil or CellCept. It is a drug used for transplant patients as an anti-rejection drug. However, people with my disease and other diseases like mine have found relief from the symptoms of pemphigus and pemphigoid on this drug. Mycophenolate mofetil is an immunosuppressant drug. If my immune system is suppressed then it cannot attack my own body. So, voila! Blisters are gone! At least, that is the hope!
There are potential side effects from this drug.
Nausea
Upset stomach
Diarrhea
Increased risk of getting certain cancers
Increased risk of getting infections
Blood issues such as low blood counts and higher glucose levels
and others…
My goal is to focus on the potential benefits and NOT the potential side effects. I choose to stay positive. I CHOOSE JOY in this opportunity to feel better and have a better quality of life. Sometimes, I have to CHOOSE JOY every hour when I am having a bad day, but I CHOOSE JOY all the same. Thank you, Pat, my doctors, and my God for the patience and support and love that I have felt while making this decision over the last year. (To read more about CHOOSING JOY, click HERE for Life’s Journey #13: Choose Joy.)
I read this quote online today. I hope we all choose to keep fighting. To hold our heads up, with God at our side to shield and protect us, to fight the battles of this life. Let’s be BETTER, not BITTER. Let’s choose to be a VICTOR, not a VICTIM. How may I best support you in this effort?Please share with me the battle you are fighting so I may pray and support YOU, too!
PRAYER:
Abba, Father. Hear the prayers of your children. You already know what we are fighting. You know our choices and our actions. You know US and our situations. Lord, give us the strength to endure and to be strong… to CHOOSE JOY… to choose to follow you in all things and at all times. Thank you, Jesus.
A fellow was stuck on his rooftop in a flood. He was praying to God for help.
Soon a man in a rowboat came by and the fellow shouted to the man on the roof, “Jump in, I can save you.”
The stranded fellow shouted back, “No, it’s OK, I’m praying to God and he is going to save me.”
So the rowboat went on.
Then a motorboat came by. “The fellow in the motorboat shouted, “Jump in, I can save you.”
To this the stranded man said, “No thanks, I’m praying to God and he is going to save me. I have faith.”
So the motorboat went on.
Then a helicopter came by and the pilot shouted down, “Grab this rope and I will lift you to safety.”
To this the stranded man again replied, “No thanks, I’m praying to God and he is going to save me. I have faith.”
So the helicopter reluctantly flew away.
Soon the water rose above the rooftop and the man drowned. He went to Heaven. He finally got his chance to discuss this whole situation with God, at which point he exclaimed, “I had faith in you but you didn’t save me, you let me drown. I don’t understand why!”
To this God replied, “I sent you a rowboat and a motorboat and a helicopter, what more did you expect?”
This story was at the heart of my God-moment this week. Let me explain…
Over the last year, I have not been making progress with my current medication for my auto-immune disease…Cicatricial Pemphigoid. (For more mentions of this disease and the impact it has had on my life, read my blog posts: Behind The Scenes #3, Life’s Journey #10 and Life’s Journey #11.) I experienced some improvement from when I was first diagnosed in 2021, but not enough that I would be considered healthy and able to eat more freely. I did not want to go forward with the next recommended drug as it is a stronger drug and an immuno-suppressant drug. Both of these qualities for the new drug brought with them feelings of fear and anxiety for me. I was afraid that if I started an immuno-suppressant drug at the age of 54 then I would be preventing my body from being able to fight off normally harmless bacteria and viruses for the rest of my life. The following questions swirled in my head…
Would I be sick more frequently?
Would I be able to get over minor illnesses without major complications?
Would I need to restrict myself from participating in public events in order to avoid being exposed to potential illnesses?
What are the other side effects of the new drug on other parts of my body?
Would this cause a shorter life expectancy?
As you can imagine, these were not fun thoughts! I was experiencing a low-grade fever of anxiety, doubt and fear over next steps with this drug.
With that said over the last two months I have been pursuing a potential alternative treatment plan for my auto-immune disease through a more holistic approach. I went through many, many, MANY tests with the treatment center and received my results in mid-April. The results showed several issues other than the auto-immune disease. Some of the issues were even described to be extreme issues. The treatment plan would consist of significant diet changes, over 12 new supplements and medications, and IV therapy. That would be A LOT of changes and A LOT of meds to manage every 2 hours throughout the day.
I was struggling to make a decision to commit to a six-month treatment plan. My husband and I discussed our options thoroughly and often. My hubby was and is extremely supportive. We had our doubts but also felt that we needed to give this a shot. Before deciding, we also talked to my general practitioner, my brother-in-law who is an infectious disease doctor, our daughter who is in veterinary medicine, and most recently my auto-immune specialist. All 3.5 doctors (Madi takes her Board exams in December 2023 so I gave her 1/2 point!🙂) were very concerned about the treatment, the side effects of the supplements and IVs to my current prescription medications, my overall health with all the changes, and even more relevant…they did not agree with the interpretations of the results. They agreed that there were minor variances in the results, but nothing that would be a red flag or serious issue. Even after all these discussions, we said YES to the plan, but the struggle was not over.
Within days of accepting the plan, I was having increased anxiety and tearful days over the decision. I was worried about what my doctors told me. I was worried about managing all the changes. And I was worried about the cost. My heart was not at ease. On Monday morning, May 15th, I was praying and crying out to God about this situation. My laments consisted of the following:
Lord, you know I have been praying.
Lord, I know many others have been praying for me too.
Lord, I know you hear us, but why can’t I hear you and your direction in this?
Lord, how can I hear your voice in this? Help me hear you!
Lord, tell me what to do!
While these prayers, cries, and pleas were exiting my mouth, out-of-the-blue, I remembered the story above…The Drowning Man. And then I had an Ah-Ha thought…God sent me three and a half rescuers; three and a half rescuers who are not affiliated with each other; three and a half rescuers who are all saying the same thing.
“Is this You, Jesus? Is this You talking to me through the Holy Spirit in my soul? Is this You who brought to mind this story in the middle of my prayer and cries for discernment?”I believe it was.
I cancelled the treatment plan the very next day.
I truly believe that if the new treatment was right for ME at this time then I would be at more peace. Two days later, after cancelling the plan, I can say that the heaviness on my heart and mind is gone. Thank you, Jesus. Thank you to all who were praying for me in this decision. We still have more decisions to make regarding changes in my medicine. And we are seeking a second opinion due to the advice of my auto-immune specialist. And you can bet that I will be listening intently for the Holy Spirit’s nudges with future paths!
QUESTIONS TO PONDER: (Please respond in the Comments section below.)
What are you currently wrestling with?
How can we be praying for you?
If you are struggling to hear God’s whispers and feel His nudges through the Spirit, have you cried out to Him to help you hear Him? If not, take a moment to do so now. He desires to move you, love you, and lead you.
“Let me hear in the morning of your steadfast love, for in you I trust.
Make me know the way I should go, for to you I lift up my soul.”
Hello, Sweet Circle of Friends. My husband and I have been on-the-go for the last six weeks…from March 16th to May 1st. I was concerned about the stress of it all in early March with planes, drives, moving, coordinating, etc. But God brought the best of it all! In all the moments, I continued to CHOOSE JOY. Sometimes I succeeded and I saw the blessings in the little things. Sometimes I missed the mark and my emotions were in control. With each new day, or even each new hour of the day, I worked towards finding the JOY. The JOY was occasionally as small as watching a butterfly flip through the air or as grand as celebrating my medical test results…even if the results were not what I wanted to hear. The JOY was in the mere fact that we have results. I no longer have to wonder and I can focus on the next steps. A summary of my blessings for each adventure are below.
WASHINGTON D.C – March 16 – March 21
My first excursion was to Washington D.C. to help our son and daughter-in-law move from Columbia, Maryland, to Washington D.C. I flew. My husband drove. We had three days of boxing things up, taking apart furniture, driving the hour back and forth with loads of items in our cars and in the moving truck, unloading, unboxing and re-assembling the furniture. It was crazy, but so exciting at the same time. By the time I left on Tuesday, we had virtually everything unpacked and in it’s place. We were only lacking a few more plants to brighten up the spare bedroom/office and a bit of the office equipment to unpack and set up.
What were the blessings in the trip to D.C.?
I felt blessed to be with Mitch and Shannon as well as Shannon’s mom over the long weekend!
I was relieved at our progress with the move. I was joyful knowing that Mitch and Shannon would have the least possible disruptions in their busy lives.
My heart was happy to know that Mitch and Shannon were in a safer community.
I love their new place and the area. It is walkable to so many things including several coffee shops :-), restaurants, shopping, Union Station, and all the sites of D.C. The row house is adorable with so much character.
They are closer to their church, small group community, public transportation for school/work, and friends.
We all had safe travels to and from D.C. as well as multiple trips between the apartment and row house.
We were able to worship together at their church in D.C. Always fantastic!
Thank you, Jesus, for a the opportunity to be able to help them and for great conversation and memories during this hectic move.
CORVALIS, OREGON – March 24 – March 29
Two days after returning from D.C. I flew to Corvalis, Oregon, to see my daughter Madi over her spring break. She was feeling burned-out from classes and exams, and we both needed some downtime. We enjoyed balancing our chores with some much needed rest. So we tackled one action along with a bit of fun and rest each day. It was a perfect getaway to see my Madi-girl and get her ready for the last term of her 3rd year of Vet School.
What were the blessings in the trip to Oregon?
I was blessed to be able to fly to Oregon and see my daughter!
We have a tradition that every time I come we rearrange her bedroom. We did this the first two days. It was so rewarding to see the new perspective and know that we were changing things just enough to make the new term feel like a fresh start. I loved helping to make her vision come to life.
I enjoyed meal-prepping so she was stocked with some healthy, favorite food choices.
We went to her church together for an amazing praise and worship experience! Always uplifting to see the familiar faces and powerful service!
I was blessed that one of Madi’s small group members prayed over me and my health at the service.
I was blessed to spend time with my daughter. No matter what we did…whether it was a project, craft, chore, or just rest, she was and is a bright light in my life.
PALM COAST, FORIDA – March 31 – May 1
WOW!!! What an experience! Pat and I have never taken a month to get away from the Indiana cold weather and work remotely. This was our first time to do this and first time in Palm Coast. We found a condo in Palm Coast on VRBO and decided to GO FOR IT! We booked it 14 months in advance and had a year to save up and prepare. Not only did we go on this trip, but we took our 75 lb. dog…Grizzly…with us! It was amazing!!! We loved it and we will definitely do this again! AS a matter of fact…we ARE doing this again in the exact same condo for April 2024!
What were the blessings in Palm Coast, Florida?
I loved the quality time with my loving, wonderful husband on the drive and throughout the month.
I felt so connected with our Creator God on my walks along the beach with Grizzly.
I loved being surrounded by the roar of the waves on the beach while doing my Bible study at sunrise.
We were blessed with terrific views of the ocean and golf course around us.
We were blessed to share this experience with friends and family who stayed with us during part of the trip.
Finally, one of the most powerful experiences in my life was finding and connecting with Lifecoast Church Bible Crafters. The women of this group…my sisters in Christ…welcomed me, adopted me into their group, listened to me, and shared with me the love of Christ and the love of crafting. There are no words to express the impact they had and still have on me. I can’t wait to see their beautiful faces again in April 2024! Love you all, sweet Sisters!
” A journey is best measured in FRIENDS, rather than MILES.”
~Tim Cahill
The last nine days back in Indiana have been filled with reflection, praises and prayers for the people and experiences on these three trips. I treasure the memories we made together with old friends, new friends, and family. I am grateful for the opportunities to see our children. And I am blessed and amazed at how I saw God’s plan in action by leading me to the Lifecoast Church and Lifecoast Bible Crafters. You all amaze me and I love seeing the light of Jesus in your eyes and actions.
QUESTIONS TO PONDER: (Please share your thoughts in the comments below.)
Are you traveling this summer? Where and what are your plans while there?
If not, what might you consider exploring locally to build new memories and meet new people?
Who was the last new friend you made and how might God have been working in that encounter?
Did you know that most people make a New Year’s resolution every year without fail? And yet every year most of those resolutions do fail. Statistics state that over 70% of people break their New Year’s resolution by the beginning of March. Yikes! So by today, the beginning of March, many people have given up and moved on without their resolution in mind.
Some year’s ago I stopped making New Year’s resolutions because I was always one of the 70%. I decided to look at the year as an opportunity to select seasonal or annual focal points. It’s not an all-or-nothing goal or a big aspiration or a workout that takes lots of time or energy. The focal points for me are do-able steps I can take in my daily life that add up to change my perspective or improve my outlook or increase my knowledge. There are no deadlines or requirements or specific actions. The focal points inspire me and allow me to be creative within their parameters. Here are some of my focal points for 2023:
# 1: CHOOSE JOY – Annual
After the last two year’s of battling health issues that frequently caused anxiety or depression, I decided that I wanted to make an effort in my decisions and circumstances to CHOOSE JOY, no matter the circumstances. This phrase became such a powerful message for me to overcome my anxiety and change my perspective that I wanted a permanent, daily reminder to focus on God’s joy. So I got a tatoo! Not only did I want to remember to CHOOSE JOY, but I also wanted to remember that I will grow in my trust and faith in the power of Jesus in my life by doing so….that is the purpose of the vine symbol of the tatoo. What are you changing this year to help you focus on the positive elements of your day?
Designed and completed by Samielle Foltz in Carmel, Indiana.
“Do not grieve. For the JOY of the Lord is my strength.” (emphasis mine)
# 2: WIN FOR THE DAY – Annual
Focusing on my WIN FOR THE DAY has also given me an opportunity to end each day processing the good that has happened in my life. My daily points of gratitude. I write these in a little journal called the Panda Planner. It is the perfect format to record what I was grateful for, what was my WIN for the day, what were my priorities and schedule as well as white space to expand on the positive elements. I also record prayer requests for my friends, family, community, and the world. This focal point keeps my mind off myself and allows me to praise God for the my WINs. Since starting this, I have found multiple WINs each day, and I have seen the impact on my attitude. What is your WIN for the day?
# 3: LEARN A NEW CRAFT or TECHNIQUE – Seasonal
I have a passion for learning. Truly. I think I could spend every day, all day, reading, DIYing, crafting, researching all sorts of things. I love to learn new crafts, new facts, and new DIY gift ideas! Each quarter I try to find something new to learn or engage with for a challenge. I believe it is good for my emotional health and mental health to continually expand my talents, activities, and knowledge. These challenges bring me joy even if I discover some of them are NOT activities I want to keep doing! Last year I taught myself…along with the amazing Toni Lipsey from TLYarnCrafts…to Tunisian crochet. I also re-engaged with how to handmake greeting cards with paper and some simple tools with my dear friend Jill Pegram, a Stampin’ Up consultant. Finally, my daughter taught me the basics of watercolor painting and my daughter-in-law gifted me the tools to do it on my own. So far this year I have learned two new crochet stitches and spent some time learning about St. Augustine, FL…the oldest city in the country. What was the latest craft you learned or the latest fun fact?
My latest new stitch…the Star Stitch! I am making this blanket as part of my service group called Graceful Hands Go Group. We knit, crochet and sew for charity. This will go to a foster care ministry that provides items for kids in foster care.
I made this blanket to donate to an organization that supports foster kids.
QUESTIONS TO PONDER: (Please share your responses in the Comments section below.)
What motivates you?
What do you do to alleviate boredom?
What is a new craft or skill you have learned?
What are your focal points for 2023?
What are your techniques or tools that you use to focus on gratitude and positive thinking?
“Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you.”
PRAYER: Abba, Father, you are an awesome, creative God. You created us uniquely yet at the same time orchestrated our lives and our callings to blend together and support each other. We all have things to do, to learn, to serve and to give. We all have trials yet each day brings blessings too. We only need to open our eyes and sometimes change our perspective to see the blessings. Lord, don’t let us miss these moments and the people that bring them. Help us reflect and process the positive elements and choose joy in all circumstances. Amen!
God whispered to me, “That’s your win.” My response, “Wait. What?? What’s my win?”
Can you imagine? This was the exchange I felt in my soul on Tuesday, February 21, 2023, while I was walking my dog, Grizzly. Let me back up to the events on Monday, February 20th…
On Monday, February 20th, I had my second, annual, ophthalmology appointment with my eye doctor to check for signs of progress of my autoimmune disease spreading to my eyes. It was supposed to be a quick, 15-minute appointment. However, my doctor quickly changed the plans for my appointment when he saw that I was on a medication that has a side effect of causing blindness. I had forgotten that I was switched to this medicine after my last appointment. He was extremely attentive, caring and flexible that other tests had to be run and he did not want me to leave before we had a complete understanding of my eye health.
My quick 15 minute, in-and-out appointment turned into two hours! After several scans, peripheral tests, cross section scans of my eyes, etc. the doctor gave me a perfect report on my right eye. He said that my right eye was in perfect health with everything where it should be and nothing added! Then he said to me, “Now, for your left eye.” Pause…. I thought, “Hmmm, this intro does not sound so good.”
He pulled out the cross-section picture of my left eye and showed me the results. Three obvious lumps were visible on the cross-section. He said, “These lumps are not supposed to be there.” He reviewed the three potential causes for the lumps with me.
First, it could be the result of the medication. He said it would be extremely rare for the medication to make a change to the eye this fast. If it did, it would normally effect both eyes at the same time not just the one.
Second, it could be the start of macular degeneration. He said if I was over 75 years old then he would positively diagnose macular degeneration. However, being only 53 years old, this disease would also be rare to develop this early.
Third, he said he had no idea what the cause was at this point.
Since this was my first, baseline exam with the tests performed, he had no other results to compare to my current status. He suggested we wait a year and retest to see how quickly the lumps are changing, if at all. He advised that I stay on my current medication at this time.
After discussing the lumps, the doctor mentioned that his second concern was my dosage of medication. He said I was taking double the amount of milligrams than was recommended by the FDA based on my weight. He said that my risk of experiencing negative side effects involving my sight was much higher since I was on such a high dosage. He recommended that I immediately reduce my medication to the recommended amount. Thankfully, he was proactive to say that he would immediately write my prescribing doctor a letter advising her of the recommended dosage change. Unfortunately, that may mean that my autoimmune symptoms with spike again.
The combination of these two new data points on my health caused me to experience a bit of increased anxiety for the rest of the day. My thoughts were swirling around the following statements:
Really?? More issues?
Will I lose my sight?
Is this macular degeneration or something else?
How long do I have before I notice my sight changing?
Is it reversible?
Why am I on the wrong dose of medication?
If I change my medicine dosage will my autoimmune flare up again?
Will I be able to tolerate additional pain and sores?
You get the picture…Now the good stuff!
The next morning I was walking my Grizzly-bear for our daily, 5:00 a.m., power walk around the subdivision. I had been practicing silence, solitude and prayer on our daily walks for about a week. At the end of my prayer-time before I was silent to listen for Him, I had been asking God to speak to me, nudge me, or impress something on me. So far, each day I came away feeling that God chose not to say anything. On this Tuesday morning, after I poured out my questions to Him and asked for patience and comfort regarding this new eye issue. I also asked Him to please say something to me. Anything. I really wanted and needed to hear Him. In the moments that followed this cry for a response, I felt the impression of the Spirit say to me, “That’s your win.” My response, “Wait. What?? What’s my win?” You see, for 2023, I decided to find a WIN each day during this difficult season of health issues. I wanted to choose the positive side of life and find a WIN each day…no matter how large or small. I wanted to be grateful for all that I had and all that God was doing through me, for me and with me.
I thought back on what I had just prayed about…my eye, my stress, my questions. And I heard again in my spirit, “Yes. That’s your win.“
I felt like I heard God telling me, “I revealed this issue to you. That is your WIN. You never would have known this was a problem or a new concern had I not revealed it to you. Now, you know and now you can work together with your doctors to deal with this and treat it ,if needed. That’s your WIN for Monday.”
Immediately, I spoke words of joy, gratitude and praise into the silence of the early morning with only my sweet, loyal dog to hear me. Nothing else had changed in my circumstances or the results except my own attitude and perspective. The doctor made room for me that very morning to do the necessary tests on my eyes. I did not have to reschedule or wait for a longer slot to complete the tests. We found our answers that same day and had a plan that same day. God helped me see that I was choosing to feel anxiety over this situation rather than experiencing His blessing in it. I am blessed that we caught it early, and we know what to look out for now. He opened my eyes to see Him in this situation. My tiny shift in perspective resulted in an enormous shift in my attitude from anxiety to joy. Thank you, Jesus.
The lesson that I hope I never forget from this hour alone with God on Tuesday, February 21, 2023, between 5:00-6:00 a.m. is that I have a choice. I have the ability to choose joy in my day, to look for Him in even the smallest of events, and to remind myself that a change in perspective has the ability to move me from anxiety to gratitude.
And after the earthquake there was a fire, but the Lord was not in the fire. And after the fire there was the sound of a gentle whisper.
~1 Kings 19:12
Thanks for listening, Sweet Circle, I pray that you too may find joy in each day, that you find your WINs, and you see God moving in your life.
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