To Be Honest

Thrive vs. Survive. I’m not sure I even know what it means to thrive anymore. Most of our days feel like survival. Doing what HAS to get done. Laundry and carpool. Kids’ activities and church. Cooking and cleaning. We have a full calendar and we delete as much as we can each week…just to survive.

Sometimes it frustrates me that this disease is invisible. I look fine, but I feel terrible. Almost every day. I can smile and participate at church, Bible study, or a football game. I look “normal” (whatever that means). But being “normal” for a couple of hours almost always means I can’t function for the rest of the day. It results in unbelievable exhaustion, muscular pain, and needing a whole lot of help to finish the day. Because I look ok, I’m expected to function as if I feel well… All the time. And that’s just not my reality.

This has been a hard week. All the normal stuff on the calendar. All the normal responsibilities. But add to that multiple doctor visits, x-rays, lab work, and waiting rooms…and more waiting rooms. The results this week are a stress fracture, a walking boot, numbers way off on my labs, new medication, and possibly a new doctor. My body no longer absorbs calcium correctly and my bones are brittle. Stress fractures are apparently common with Graves. We have laughed because stress fractures are caused by overuse. Apparently what little I actually do is too much and my body is making it abundantly clear.

I talked with a friend today whose daughter also struggles with health issues. She described it perfectly. “Some days are almost normal. Many days are not. Some are absolutely horrible. Any way you look at it, life will never be the same.”

Because we haven’t seen much progress in the last year, we are praying about a seeing a new doctor. I don’t know if things will actually get better. Some days I’m hopeful. Other days I just accept this new “normal.”

While things here are sometimes hard and sometimes discouraging, I do have hope in a future that is much much better. In the meantime, I pray to know Him better than I would if I were healthy, glorify Him in ways I couldn’t if I were healthy, and for Him to use me in ways He wouldn’t if I were healthy. And I look forward to His return.

“But our citizenship is in heaven. And we eagerly await a Savior from there, the Lord Jesus Christ, who, by the power that enables Him to bring everything under His control, will transform our lowly bodies so that they will be like His glorious body.”

Philippians 3:20-21

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The New Year Brings Change

The beginning of something new. A new school year. A year of firsts, a year of lasts, a year of changes. Personally I don’t do change well. I’ve never been accused of being spontaneous. I like routine. I like order. I like knowing what to expect. Some may call it boring, but I like to call it stability. As we all know, change is a part of life. Relationships change. Responsibilities change. Schedules change. And, of course, the weather changes! With all the changes we have to adjust to, I’m so thankful that my God does not change!! In the midst of crazy, I know where to place my trust. I know who will never let me down. And I know who controls all things. I can rest in the changes because I know He is sovereign.

Today is the first day of school. As I write, my 3 big kids are starting 9th grade, 8th grade, and 3rd grade. The beginning of high school. The first year of real grades. New curriculum. New friends. New schedules.  While it’s a lot of firsts for the big kids, it’s a year of lasts for the baby. The last year to go to BSF (Bible Study Fellowship) with me. The last year home.

For me, the biggest change is that after 12 years in BSF leadership, I will return this year as a class member. I love BSF and am thrilled to study Romans with my class. But it will be a significant change for me. I will miss the depth of relationships with other leaders and our Monday morning leaders’ meeting. This has been my place of study, service, and connection for so long.

For this season, I am called to step away from what is comfortable. What is known. What is easy…because it’s familiar. I’m physically no longer able to keep up with my old schedule and still be what my kids need. I don’t have the energy for homeschooling, carpool, their activities, and my normal routine.

Over the last year, we have slowly removed commitments from our lives. About 2 weeks ago, it became apparent that it wasn’t enough. I have to minimize stress and conserve my energy for what has to be done. While these changes were enough for summer, it was evident that they wouldn’t be enough once school started. God was clearly calling me out of BSF leadership so last week I said “yes” to that call. Yes to change. Yes to new.

I don’t really know what to expect in this new season. I do know it will be a season of carefully prioritizing how I spend my time and energy. As we continue to learn how to manage life with Graves’ Disease, we will continue to look for the open doors God gives us in this new season.

 

“Forget the former things; do not dwell on the past. See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland.”

Isaiah 43:18-19

 

The Gift of Serving

We just got home from a 9 day mission trip to Denver, Colorado, where we saw the Lord do amazing things. In our lives. In our girls’ lives. In our jr. high students’ lives. And in the community we served.

God gave me a special gift. About 2 weeks before the trip, my doctor told me not to go. She was concerned the altitude would affect me. (Altitude can increase heart rate and also increase muscle pain.) There was no way to know how bad it would be and I already suffer from altitude sickness. (Some of us were just meant to live at sea level.)  We prayed about it and decided to trust the Lord to take care of me.

The week before we left, we adjusted some of my medicine in hopes that it would help me get through the week. I also started taking some natural pain relief pills that help with inflammation. I took a minimal dose before we left and then took the maximum dose while we were there. I could definitely feel the pain from the altitude, but I was able to make it through the days. The nights were harder. They’re harder at home too so that’s to be expected. The first couple of nights were difficult, but I was able to skip the evening activities without being missed. I had to go back to taking my heart medication that I haven’t needed in almost a year. But with the heart meds, the new inflammation meds, and being careful to stop during the day if I needed to, I was able to successfully complete the week. There were times when I had to sit while others worked because my heart rate got too high or because I’m still unable to lift heavy things. But we had a fabulous team who easily covered for me. They were all very understanding and kind. I really struggle with watching while others work. To me, that’s worse than the pain. I’m so thankful for the great team we had and the way they served.

As we got closer and closer to Texas on the way home, I could feel the pain subside. While I love home and I’m thankful to be back, I left part of my heart in Denver. It was a special week and God is so good to allow me the opportunity to love the people there and serve beside the jr. high students from our church.

Love serving with my family!

We worked with Denver Metro Ministries. They run a mobile food bank and teach Sidewalk Sunday Schools. It was such a blessing to meet the families this ministry serves.

This little boy grabbed my heart. I’m praying that he will come to know Jesus.

Look at your hands. Can God use these hands? Yes, He can…and He did.

Our team was made up of 7 from our church and 4 from a church in Iowa. Thankful for each one.

After leaving the site in Denver, we spent our free day in Colorado Springs.

Garden of the Gods

Air Force Academy

“He performs wonders that cannot be fathomed, miracles that cannot be counted.” Job 5:9

 

Sunlight through the Clouds

The last 2 months have been a whirlwind. Life doesn’t slow down even though I can no longer keep up.

Summer is here. It’s still busy and we are still struggling to minimize commitments as much as we can. It is nice to be in a new season and not have the responsibilities of school and school-year activities. We get more time as a family and more time by the pool. And that fills my cup!

“How are you?”

This is a question asked all the time…sometimes just as a courtesy. Often, we just give the answer “fine.” Often, that’s the answer we expect when we ask.

When people ask me, they are usually asking about my health. I really don’t know how to answer. The truth is that I’m doing so much better than I was this time last year. Praise the Lord! But I’m nowhere near where I was…or where I want to be. I struggle with answering honestly, but without complaining.

I am able to walk further, stand longer, and carry more groceries. But I still have to stop, sit, and ask for help. There are good days, but there are also very hard days. And I never know which one it will be.

It’s really a roller coaster. I’m learning how to manage, when I need to stop, and what to let slide. I start slow almost every day (this is very difficult since I used to be a morning person). I take morning medicine at 3 different times. By the time I get the second set of pills, I’m usually doing better. I do my best to do the necessities when I feel my best. The late afternoon/ early evening is when I start to go downhill. Some days the downhill slope is steeper than other days. Evenings are very difficult unless I can manage to get a nap.

I have minor issues like tinnitus, nausea, and headaches. The more difficult things to deal with are my racing heart, inability to stay asleep, and muscle pain. I am still not able to exercise because my heart rate gets too high. I am deficient in almost every vitamin because my body doesn’t absorb anything correctly.

While all of that sounds like complaining, I am truly grateful because I know that my “suffering” isn’t really suffering. My little “thorn in the flesh” is just a thorn…and not a briar patch. And I firmly believe that my God sees and knows. And this is something He will use to refine me and glorify Himself. When I am weak, He is strong.

“How are you REALLY?”

This is the other question I’m asked that I don’t know how to answer. We’ve made some adjustments. Brian is wonderful and is constantly trying to take things off my plate. I don’t like that he has to do so much. But he never complains. In fact, he insists. Because of his attitude, most days I am able to accept this new routine.

But honestly there are days of great discouragement. Frustration with my inability to accomplish things I used to be able to do easily. Sadness when our evening game time turns into evening TV time because I just can’t sit at the table to play with the kids. Some days the pain is overwhelming. Some days we mourn the unmet expectations. Some days we throw up our hands at the unanswered questions.

But we trust. We pray. We do what we can knowing that He is sovereign over all things.

And we continue to look for the sunlight through the clouds.

“He parted the heavens and came down; dark clouds were under His feet.”

2 Samuel 22:10

The Desire of our Hearts…one year later

Over Spring Break, we got the results of my March labs and I continue to be hyperthyroid. But I didn’t need the lab report to tell me what I already knew from my heart rate. Because of my doctor’s vacation schedule, I wasn’t able to get in for 2 weeks. In the meantime, she adjusted my meds over the phone. When I finally got to see her, she decided to try a detox followed by a new dosage. I hadn’t been off medicine since my last detox in August, so I was a little nervous as to how that would go. With the exception of being more tired than normal, it was pretty uneventful. The new dosage of medication brought a week of unwelcome but expected nausea. I spent the majority of the first 3 days in bed feeling almost flu-like. The next 3 days were spent recovering and resting. Slowly my body has adjusted to the new dosage and now we wait for my next labs.

Doctor appointments, medications, labs, adjustments….it’s a familiar cycle.

And here we are at the One Year mark. Not really an anniversary I would choose. Somehow in the midst of the health struggles, we have managed to adjust and function. It’s been a long year. One filled with hope and disappointment, joy and pain. We have celebrated and we have cried. We have lost and we have gained.

We have seen God’s goodness abound although circumstances are difficult. Unable to stand for very long means I do a lot of sitting.  I’ve never been good at being still so I’m certainly learning new lessons. Slowing down has brought many opportunities for conversations, greater insight, and deeper relationships with my kids. It has also meant sacrifices, relying on others for help….and a lot more chaos. But I see how God is refining me. He is helping me to relax about things left undone (and things done differently), and spend the little energy I have on what’s most important.

We continue to pray for healing…or just some relief. We continue to look for the good that God is working in the midst of difficult days. And while we wait, we continue to trust Him.

I want to feel better. I long for the energy to do more than just the bare minimum. But if this is our new normal for another day, another month, another year, or many more to come, I will continue to trust that He is still in control. He sees. He knows. He is present. And He can be glorified in my weakness.

There may be laundry in the living room, dishes in the sink, nerf darts all over the house, piles of papers to sort, and an inbox full of emails to respond to. Some days I feel terrible, accomplishing very little. Some days I feel ok and I push to do what I can, conscious of the fact that if I push too hard bad days will follow. But this life isn’t about me-what I accomplish or how I feel. There’s a bigger picture here. I can’t see it all, but I know God can. And  I want nothing more than to give Him glory no matter the circumstance. So we continue to trust Him as we continue to wait.

“Yes, Lord, walking in the way of your laws, we wait for you; your name and renown are the desire of our hearts.”

Isaiah 26:8

The Good is There…

We sat in a little booth. It was our first time out by ourselves in a few weeks. We were having a nice time. Good conversation and great company. Then the tears started to fall. Seemingly out of nowhere. It didn’t make sense. It had been a good day.

Sometimes the emotion just takes over.

My life has changed. As a result, our family dynamics have changed. Supplements. Vitamins. Medications. I actually have so many pill bottles that I have them divided into 2 bags(!), a morning bag and an evening bag. Keeping all the prescriptions refilled and supplements stocked is a full time job. I spend hours each week in doctor offices, labs, or on the phone with doctors. The medical bills, papers, and research are stacked in a pile that just keeps growing.

Last week I started watching a 9 part documentary on autoimmune thyroid disease. After taking 6 pages of notes, I finally stopped because it was way too much to absorb and implement. I’m constantly looking for new things to try just to feel a little bit better.

I rely a lot on my husband, mom, and mother-in-law just to accomplish the bare minimum. I am truly thankful for them. There’s no way I could get through the day if it wasn’t for their help…along with the countless friends who help with rides for the kids. …But I feel guilty.

Brian does almost all of the shopping and cooking. He helps with the cleaning and often comes home from work early to help me. I rely on my mom or mother-in-law to keep Jacob on homeschool days so I can homeschool the big kids. Friends bring Ashley (and usually Audrey too) home from school on their school days so I don’t have to make 2 trips (Tyler gets out earlier than the girls do). It’s really hard to need so much help…and at the end of the day, I’m still exhausted. Spending time with the kids, playing games, and going outside all seem like luxuries that only happen if it happens to be a weekend with nothing planned (or if it’s Spring Break). The TV or computer screens have become babysitter more than I care to admit. For a while I justified it because “it’s just a season” or “we’re in survival mode for now.”

But that implies that things will change…

And as time goes on, I begin to wonder if things really will change. Honestly, I don’t know that it will. Is this our “new normal”? And that’s when discouragement sets in.

As we sat at dinner that night, Brian let me share my worries and my fears. It’s hard. Harder than I want to admit to myself…or to anyone else. I’d love to act like everything is fine and we’re doing great. Maybe if I tell myself (and you) that we’re fine, it will be true.

The truth is there’s so much to be thankful for. This is small in comparison to what a lot of people are enduring. God is good. But this is hard.

I struggle with the line between honesty and complaining. Can I tell you honestly what we’re going through without complaining? Can I actually be grateful for this experience?!

I’ve said it before…and I think I’m right. I have a choice to make.

I can wallow in self-pity, obsess about everything that isn’t ideal…or I can look for the good that God is working through this. He promises me good (Romans 8:28)…so I know it’s there. Some days I have to search more than others. But it’s still there. And when I can’t SEE the good He’s working in me or in my family or through our circumstances, I KNOW that He is good and He is present. And He never changes.

“When I said, “My foot is slipping,” Your unfailing love, Lord, supported me. When anxiety was great within me, Your consolation brought me joy.”

Psalm 94:18-19

Thyroids and Butterflies

I have struggled with this post. Struggled for words. Struggled with how I feel. The physical strain takes an emotional toll.

My lab results in January were the first “normal” results I’ve received in 10 months. And for the first time, nothing was changed. No figuring out new medicines or adjusting to new side-effects. It was nice to have a month off. I was surprised by the “normal” results because I still didn’t feel like myself. I was seeing improvement though. There is an “optimal” range within normal results so I assumed that was the reason I still didn’t feel quite right. I also found out later that my T3 wasn’t tested…so there’s a good chance it wasn’t “normal.”

My lab results from last week showed I’m hyperthyroid again. And so the roller coaster ride continues. Honestly it’s exhausting and easy to get discouraged. This is a long road. It often feels like one step forward and two steps back.

Graves is an interesting disease in that it affects everyone differently. The severity ranges anywhere from very mild to life threatening. It affects your entire body, but not everyone experiences all these effects. This makes it incredibly difficult to diagnose and even more difficult to treat. Once diagnosed, medication also affects each person differently.

I commonly hear “I’m a (name your medical profession) and I know about this disease” or “I have a (name your relative) with Graves” or “I googled it”…. “and it’s no big deal.” While I’m completely confident that this is something I will live through, it is a serious disease that must be treated. Two people with my same diagnosis passed away last Fall. This is why I went through the internal radiation treatment in September. That treatment should remove the life threatening elements of this disease. Graves can be controlled, but it can’t be cured. I hope to get to the “controlled,” “no big deal” phase soon.

This is a healthy thyroid:

 

This is a thyroid with Graves’ Disease:

 

This is a butterfly:

I spoke at a retreat last fall on transformation and used the butterfly as an illustration. When I decided to use the butterfly, I did not know it was the symbol for thyroid disease. In the last 10 months, I’ve become part of a community of people suffering from various forms of thyroid disease. To most of them, this butterfly is a reminder that they are unwilling participants in this club. To me, it’s a beautiful picture of the Lord’s work in my life. A reminder of His presence. A reminder that He is active and sovereign. A reminder that He won’t waste this circumstance, but that He will use it to make me more like Him. My thyroid may look more like the diseased picture than the butterfly clip art, but neither my thyroid nor this disease define me.

“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.”

2 Corinthians 4:16-18