It only took about a year, but I finally got some of my Alaska photos posted below! I plan to write an update shortly . . . Love, April

I cannot believe how fast time flies. This happens every year but seems to be speeding up – it’s almost the holiday season! What? How can that be? Didn’t we just put away all of the Christmas decorations? Didn’t Jonathan and I just celebrate our December wedding anniversary? I just don’t know where the time goes.

I’m in midst of fighting a lingering cold. Most people get a cold and it passes in a week or two (or if you are one of my kids, it seems like a day or two), but for me it lingers and affects my breathing by causing me to get short of breath from light activity. Jonathan and I tried to take a short walk last night but I ended up having to convert my walker into a wheelchair because I just couldn’t take deep enough breaths.  Its not just frustrating, but it can feel a little scary at times. Thankfully I have a terrific lung doctor who is following me and he took a chest x-ray last week which didn’t show pneumonia, and I have a pending sputum culture that will show me if antibiotics are needed. Hopefully I’ll be on the mend soon!

I truly can’t complain too much. This time two years ago, I was about at my lowest. I was wasting away physically and mentally I was struggling to keep it together. I was having panic attacks and a constant hovering of very severe anxiety. I didn’t sleep for three days and I was losing the will to continue on. It was the lowest emotionally and probably physically I had ever been.I was just praying for relief and it couldn’t come fast enough.  That’s when you wish the doctors would just give you something to knock you out, but for some reason they just let it run its course. I had psychiatry intervene but their measures took time which felt like an eternity to me. Thankfully now those measures have kept me even-keeled for two years. I rarely have a panic attack or significant anxiety attacks. And when I have had an attack, I can sometimes wait it out knowing that it will pass, and when it is too much, I have medication that can lessen its grip. Mental illness is dear to my heart and I feel extra empathy for those who suffer with its debilitating effects.

As far as good news, my mom, sister and I took a wonderful trip back in August! My mom treated us to a trip to Seattle and Alaska! It was wonderful! I normally don’t go anywhere except my mom’s house (two hours away) and the panhandle of Florida for a yearly trip. It’s normally just been too hard with all of my medical equipment, trying to avoid respiratory illnesses and having the stamina for travel and a new location. But, we had a wonderful travel agent who specializes in helping people who are on oxygen with their traveling needs. She planned out every detail from the airport transportation to the oxygen concentrator in our ship suite. She made everything less intimidating and more enjoyable!

We flew into Seattle and spent 3 days getting acclimated and rested up for our departure on a cruise. In Seattle, I saw an old friend that I hadn’t seen in 28 years! She and I went out for a cozy bowl of clam chowder and then a fun ride on Seattle’s big Ferris wheel. Then my mom, sister and I took a double-decker bus tour around the town and had such a good time with lots of laughter. It seems that being pushed around in a wheel chair (especially on bumpy streets) creates lots of fuel for giggles! I’m so glad that my family has a lot of patience and strength to push me around. I try to walk some, but generally I’m too slow and my stamina can’t keep up.

I’m trying to insert pictures, but running into some technical glitches.  I’ll keep trying. . .

After our time in Washington, we boarded a Holland America cruise to the Inner Passage of Alaska. We shared a lovely room which amazingly felt roomy and had a wonderful balcony that allowed us to see the sights without having to leave the comfort of our room or our cozy robes. My favorite sight was Glacier Bay National Park. It was stunning! And one of the coolest things is that it can’t be accessed by road – only by boat/ship. So, it’s extra special to see some of God’s most spectacular creation and know that not many are blessed to see it. It reminded me a lot of the Tetons in Wyoming plus active glaciers that if you are lucky, you get to see calve – which my sister did see a small piece calve into the water.

The food on the ship was top notch!!! Boy, I’m surprised I didn’t gain 10 pounds. My absolute favorite was breakfast room service. Every night the 3 of us would fill out our menu for breakfast which was always sure to have plenty of coffee. And every morning, some days early and some days late, we’d have our hearts’ desire of fresh fruit and cold/hot breakfast treats. It was such a nice way to start each morning. Our days were full of more food, of course, and touring the towns on our stops. We found it fascinating that Juneau, the capital of Alaska, can only be accessed by boat or plane. There are no roads that lead into the city. While we were in Juneau we took an excursion to do whale watching. Unfortunately we didn’t see any big jumps or big tails, but we did see their backs from a distance and the blowhole spray. The spray was fascinating.

We had a couple of dressy nights for dinner which was fun. We had delicious crab legs, lobster, Baked Alaska (for the first time – I always wondered what that was), delicious wine and all sorts of amazing coffee drinks. I know it wasn’t free, but it felt “free” because everything was inclusive. We all enjoyed a couple of trips to the spa which was relaxing and a few times we went to the Blues Club at night for good music. People watching was of course the best part, especially watching my sister and mom get up and dance a little to the classic “September” song by Earth, Wind and Fire! They really got down!!! 😉

After so many years of ups and downs it was nice to have a sustained “up” for 10 days while us ladies just enjoyed each others’ company, get good rest, eat great food and chat and lots of laughter. We also met lots of nice people including the crew who were above and beyond in their service to make our trip enjoyable.

In addition to my travels, we had a new family member join us this past February. Jonathan’s brother and sister-in-law welcomed a precious baby girl! So, now I have three nieces and two nephews! We also had a wonderful family reunion in July where we enjoyed spending time with Swedish cousins from my mom’s side of the family. It was so nice to see the fourth generation of cousins get to know each other and hopefully begin the first of more occasions to spend time together.

In sharp contrast, things in our world have been very unpleasant. The turmoil in the Middle East has been heartbreaking. It’s so hard to understand how people can be so cruel to one another.  Life is hard enough without inflicting so much useless pain.

This is where I have to turn my thoughts over to God and seek His comfort. He is the only one who truly understands and that holds the remedy for healing. Otherwise, it seems so futile. But we can’t give up hope. Here are some verses for the times we are in:

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 4:18

Be joyful in hope, patient in affliction, and faithful in prayer. Romans 12:12

But blessed is the one who trusts in the Lord, whose confidence is in him. Jeremiah 17:7

Yes, my soul, find rest in God; my hope comes from him. Truly he is my rock and my salvation; he is my fortress, I will not be shaken. Psalm 62:5-6

I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.  Romans 8:18

He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away. Revelation 21:4

Yet this I call to mind and therefore I have hope: Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. Lamentations 3:21-23

Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.  Deuteronomy 31:6

I am doing so much better! It has been such a gradual process that I have to look back at old texts and calendar pages to remember the road I have traveled. I can’t believe that I had gotten down to 94 pounds and after tube feedings and oral feedings, I finally found myself back to a healthy weight. I’m no longer on tube feedings and now I’m completely sustained just by my diet. For many months I was unable to drive a car – I didn’t have the stamina. Driving takes more energy than you realize. Plus, when I got to my destination I needed help with doors, holding all of my gear and often needing help with my wheelchair or walker. Tomorrow I’ll drive one hour for an appointment all by myself, and since its an easy parking and short walk inside the door, I can do it alone.

My mom gifted me some very helpful equipment to help me gain independence. Granted, a walker isn’t really a girl’s dream birthday gift (haha), but it has truly helped. It is lightweight and able to convert from a walker, to a chair (so in long lines I can sit or take breaks), and into a wheelchair. My old equipment was very heavy and hard to use. Now I can even get it in and out of the car by myself when necessary.  She also got me a really nice portable oxygen machine. It is smaller that my oxygen tanks and the battery last several hours before charging. Before I had to manage large tanks or carry a few small ones. All of this new equipment has helped me to get around easier. I didn’t realize as my mom was doing the research for these items and finally purchasing them, just how helpful they would be. It has really changed my day-to-day quality of life.

I still have my challenges. I require oxygen 24/7 and I’m limited as to how much activity I can withstand. That means showers are a big activity for me and household chores (the ones I can do like dishes and laundry) take extra time and patience with lots of breaks. I also continue to have severely dry eyes that require special scleral lenses that hold saline onto the eyes and corneal scarring that has affected my right eye vision. Despite these things, with extra effort and timing, I can still do a lot especially compared to a year ago. I’ve also discovered the fun of the motorized shopping carts at Target and Lowe’s! Elizabeth and I had some good laughs as I motored through Target last fall buying her college gear. The reverse horn is really loud and it is easy to go into reverse on accident – so not only was I often going backward for no reason, but I did it with an amplified beep!

Some other good news is that Jonathan and I celebrated our 25th wedding anniversary a little before Christmas. It is so amazing to think that that many years have passed! He has been such a blessing to me. I can’t imagine going through my health battles without him. He also celebrated 10 years of his business (openskyideas.com or jonathanscheele.com) in October.  Truly a blessing to be in business for himself so that he has been able to travel with me for treatment and stay overnight in hospitals when needed and take me to many many appointments. He’s known for often working on his laptop everywhere we go.

I’m sure there is more to share, but I’m just not thinking of anything more right now. We had both a lovely Thanksgiving and Christmas with both sides of our families and we are looking forward to a good and hopefully uneventful new year. Please continue to keep us in your prayers.

One more thing. Go Dawgs!!!

It’s been a few weeks and I don’t remember what I was listening too, but I’m guessing it was a podcast or something I streamed online, like a church service. Anyway, it helped me see the scripture in Philippians 4 with fresh eyes.

As I struggle with anxiety, I can see how these verses can help with refocusing my thoughts and having more peace. Here is an excerpt from Phil. 4 below:

⁴ Always be full of joy in the Lord. I say it again—rejoice! ⁵ Let everyone see that you are considerate in all you do. Remember, the Lord is coming soon.

⁶ Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. ⁷ Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.

⁸ And now, dear brothers and sisters, one final thing. Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise. ⁹ Keep putting into practice all you learned and received from me—everything you heard from me and saw me doing. Then the God of peace will be with you.

What I’ve learned from this chapter of scripture is that we can “crowd out” anxiety in our minds with gratitude. Really focusing on all of the good we have in our lives. There is so much more good than bad, but for some reason we let the negative take hold of us and it begins to overtake us when there is so much to be thankful for. I’m trying to think every day what around me is worth saying thank you to our Heavenly Father for, such as: our loving God, salvation and eternity in heaven, abundance of water and food, safe community, good schools, freedom to worship, freedom of speech, etc.

Here’s my Anti-Anxiety Cheat Sheet:

1- Gratitude: antidote to anxiety. Gratitude “crowds out” anxiety. Pray.

2 – Put mind on what is pure, lovely and true. Reorient thoughts.

3- Get Busy. Serve others.

Anxiety is not fixed by simple means. It really takes a full-on attack and not just passive prayers. It takes mindful captive-taking of thoughts to obey Christ. The struggle is not easy but it is possible with God’s strength.

I’m so glad that the terms “anxiety” and “depression” are less stigmatizing today than they were in the past. It still doesn’t roll off of the tongue effortlessly, but it is definitely easier to bring up in friendly company for worthwhile discussions and possibly when mental-health help is being sought.

Our whole life, we are encouraged to “sell” ourselves. We need to make friends, be likable so that parents will let you hang out with their kids, get teachers and other adults to write recommendations, sell ourselves to get our first jobs, market ourselves to get a first date and then we get into competition for applying for good colleges and first jobs as we start our careers.  There really isn’t any downtime on just being genuinely who we are. It seems we are always trying to sell ourselves from  the beginning.  So, it gets kind of confusing on knowing what’s the real person and what is the “mask” we’ve made to show the world. No one wants to “buy” a sad or fearful worrier for their friend, employee, spouse, etc.

I think it took me 28 years before I realized I was in the grip of debilitating anxiety and depression (starting in childhood).  I always attributed my restlessness and sadness on the current crisis of the moment, i.e. friends, school, exams, jobs, wedding planning, moving, etc. I finally sought out therapy from a Christian psychologist who helped me to understand anxiety and depression, and led me to a psychiatrist to also get my depleted psychiatric neurotransmitter levels back up to par and we also incorporated physical therapy for an old neck injury that was only getting worse over the years.  My health: physical, mental, spiritual  and emotional were finally coming together.

That was something I had to understand. For me, I felt like being a Christian should be enough. I had accepted God’s gift of grace. I was healed spiritually because Jesus died for me. I was/am a sinner and Jesus died for me 2,000 years ago in my place to be the perfect sacrifice to cover my sins, so that by simply accepting his gift, I am free of the wages of sin which is death (eternal separation from God). My sins have been fully paid for, so I can live today knowing that when I die I will be with God (the one true God: The Father, The Son and the Holy Spirit). So, when I think about how I have been given such a tremendous gift to be in the presence of our good, loving Lord for eternity in heaven, how could I possibly be troubled or down? I would often beat myself up even more because I wan’t embracing the gift he had given me, and it easily became a vicious cycle. It was finally so good to know the truth. The truth is that many of the people who were believers in the Bible battled with depression, despair, sadness, anxiety and fear.  They were real people with real feelings like is common to each of us.

For twenty plus years now, I’ve had to use all the tools I can to help me battle my anxiety and depression.  I have a wonderful Christian counselor, I have a psychiatrist that follows me closely and monitors my medications to be sure I’m  getting what I need and not taking prescriptions that can actually interfere with mental well being, I often seek prayer from individuals ( I may have even asked you 😉 ) or through the church. I’ve learned that getting the right amount of sleep is important ( I need more hours than most people – I always have but probably even more so because my lungs are always working so hard), nutrition is super-important too, so the tube feedings have been critical to getting me back on the right path, and like everyone, being active with exercise (which is sometimes just very simple arm exercises)  – can add up to an overall sense of well being.

I believe that God can work through all of these things. The whole mental health thing is confusing to me, but I believe it can be turned around and then set back on the right path and pointed in the right direction. For me, it is sometimes a daily challenge or even moment to moment on some days. I wish I could say it is easy and you can expect it to go away after x number of many battles, but that isn’t what I’ve experienced so far. I’ve seen counseling help me with the moment to moment wrestling for the anxiety to stop, I’ve taken medicine that can calm and soothe my brain with a little time, I’ve spoken to God more because of it and I’m hopeful that I’ll be able to sense the mental health crisis coming and that I’ll be able to stop it in its tracks before it gets a grip on me.

Here are some good Bible verses for battling anxiety and depression. Sometimes I find looking up the different translations of the verses can be eye opening. It can give a freshness to verses we become overly familiar with or some translations are just easier to understand.

Matthew 11:28 niv

Deuteronomy 31:8 niv

Psalms 94:19 nlt, hcsb

Isaiah 41:10 niv

2 Corinthians 4:16-17 nlt

Romans 8:15-17 msg

Romans 8:18 nlt

Galatians 6:2 nlt

Romans 10:9 nlt

Psalms 94:19 esv

2 Corinthians 3:17 nlt

Proverbs 4:23 nlt

John 14:6 nlt

Psalms 27:14 nlt

Mark 5:36 niv, nlt, esv

1 Peter 5:7

John 16:33

Jeremiah 29:11

Joshua 1:9

Romans 8: 38-39

It has been quite a while. Every time I think I’ll write a post, something distracts me or I think probably no one is still reading it any way.  However, every now and then someone tells us they check my blog for updates, so here I go.

It’s Monday, before Thanksgiving. I love Thanksgiving. To me, it is sort of an uncomplicated holiday filled with food and family, and a focus on thanking our Heavenly Father for all of His blessings. It was also one of my Dad’s favorite gatherings as well. He usually prepared a devotion of some sort and delegated verses and/or Bible topics to his sons-in-law or grandkids. There were times we thought this was a mighty lofty goal, especially when the littles were so young and rambunctious. However, now they all remember it fondly now and it is a tradition we plan to carry on.

My Dad died on April 19th this year.  It is so unbelievable. He passed away seven weeks after being diagnosed with Acute Myeloid Leukemia (AML). He was one of the healthiest people I knew. But God has numbered our days and we can’t alter that. I do think that the way my Dad cared for his body perhaps made the 77 years he had with better quality – perhaps less aches, pains, dementia, etc. I’m sure there was some benefit – I know he was always able to help us out running errands, playing handyman, researching random things for us online or at the hardware store, etc.  Boy, we miss him. I didn’t realize how much it would hurt when there are simple things I’d ask him or that he’d run to the store for without complaining. It hurts not having him here, but I’m positive he is in the presence of our Lord. AND we will be reunited again, for eternity.

This fall has been rough. I think – no, I know – I probably hit rock bottom a few weeks ago. I didn’t know I could go any lower. It seemed I had been through so much already. I’ve found that the mental/emotional struggle can be the absolute hardest. About three weeks ago, I went three days without sleep, barely eating (my weight was scary low) and in complete despair. Anxiety had gripped me ferociously and I found it so frustrating especially because I have a firm belief that God can comfort me and can be trusted. I have had tastes of this many times before, but this was more excruciating than ever. I was paralyzed – not even wanting to get up to go to the bathroom.  Because it was so painful, I’ve actually avoided asking or thinking too much about what all went on while my mom and Jonathan looked on – helping the best they could.

I had already been hospitalized 3 times since the beginning on August.  Our family (excluding Amber, but including my mom) had all gotten Covid. We were vaccinated, and thankfully that helped us to all have milder cases.  I went to the ICU 2 times to recover, but thankfully it was much gentler on me because of the immunity I had built up from the shots. I had to be isolated because of the Covid and the family was sick, so they couldn’t visit. Thankfully, God got me through without feeling terribly lonely – I’ve always been blessed to have Judith, my mom or Jonathan stay with me it the past. Finally, I was able to have a visitor a couple of hours through the glass as time went on.

Not many days later, I was admitted into the hospital a third time. Covid was gone, but I had coronavirus HKU – an upper respiratory virus. I’m pretty sure each time I went to the hospital, we called for an ambulance – I’ve now become used to the spectacle, and pretty sure my neighbors know that it is not necessarily an immediate life or death situation next door.

The fourth time, a few weeks ago was the absolute worse, though, as I said earlier. I had so many “what ifs” flying through my head, pondering about my future and care and how I was contributing to my family and my community. I felt like I was sucking the life out of everything and not contributing much of anything. The Enemy was playing with my well-being and I was spiraling downward.  The pain was indescribable. The mental pain.

I have such empathy for those struggling mentally and emotionally. It is a true illness and doesn’t show itself because of a lack of belief in the Lord. I believe it is like a physical illness, AND God can heal it just as a physical sickness. Although, it can feel extra tricky.

So, Mom and Jonathan called the ambulance for my fourth admission to Vanderbilt University Medical Center. It is all such a blur to me, and I’ve chosen not to ask all of the details because I don’t want to relive the anguish right now. But, I’ll say when you go three days with zero sleep, a constant anxiety attack including labored breathing and pretty much starving, you need nothing shy of a miracle/intervention by Jesus.

Thankfully, I got it! I wish I could say the doctors knocked me out and I woke up happy. No, I had to continue breathing through it until eventually my body fell into a deep sleep – sweet relief! They were able to get total parenteral nutrition (TPN) started through an IV to begin re-feeding – my weight now down to under 100 pounds. My meds were examined carefully by the teams of doctors of different specialties and 3 teams were established to figure the best way for me to get a feeding tube. They were hesitant because of my compromised lungs (due to GVHD related to my 2014/2015 stem cell transplants, I’ve been on 24/7 oxygen since 2016). After one week they decided they would do the surgery without sedation because of their concern I’d end up on a ventilator and not get off.

I had no choice unless I went completely against their advice. Thankfully, they were able to do the procedure early in the morning so that I had less time to think about it and they gave me some valium to keep my calm. I had a kind nurse hold my hand, but I’ll say it was weird to hear all of the conversation of the surgeons. But success! To have a feeding tube is a blessing – which I don’t know if many would ever think that, but when you are malnourished your mind and body truly do not work right. So many things fail. My lack of appetite and lack of energy to eat/prepare food is now solved knowing I have complete nutrition as needed through the feeding tube. I can eat normally, but also supply the extra needed that I’m unable to meet on my own.

So, that’s where I’m at right now. There have been so many ups and downs. So many stories to tell, but I’ve neglected to get on here and share them. I’ll try to tell them as they come upon my mind. The basic thing I have to share is that life is hard. Don’t buy into the commercial image that life is always easy and beautiful if you x,y,z . . . something or other. Scripture tells us that in this world we will have trouble, but He has overcome the world.  (John 16:33) Our lives have purpose and meaning even when we can’t see what it is. It is so easy to feel despair with so many factors, but Jesus calls us to Him for comfort and strength. Breath by breath, step by step, you are never alone. God goes before you, behind you, above and below and on both sides. (Psalm 139: 7-10) He’s here and already waiting at tomorrow. Focus on this day, for tomorrow has enough to care about when that day comes. (Matthew 6:34)

Happy 19th to our eldest – in college and doing great! God is good!

Jonathan here:

This will be very quick. After almost 17 months of avoiding it, covid has arrived at our home. Elizabeth, Harrison and I have it – I was just diagnosed hours ago at the Spring Hill Vanderbilt walk-in clinic.

However, the important update is regarding April (This all happened yesterday). She developed a 100.4 fever after a night of moderate coughing. Her pulmonologist suggested an immediate trip to the ER for rapid testing and treatment. After a few minutes pf prep and packing, she made the  decision that an ambulance would be the wise choice – her oxygen saturation kept dipping in the 70s at rest / light packing.

At the ER she did test positive, and was transferred to the ICU. There she was immediately treated with a biPap. Her blood-gas CO2 was very high. After a few hours, it improved, and since then, she was placed on an Optiflow. She continues to improve, is sitting up and in great spirits.

God is good. And we’re just walking through this moment by moment. Please pray for our family and April. It’s difficult being apart through this. Thank you!

I’ve started and stopped this update a few times. I think it is finally time to get it done. My procrastination is exhausting. 😂

I’m sitting on the front porch swing at my parents’ home in the country about 2 hours from my house. It couldn’t be any prettier. The sun is about an hour from setting, the humidity is low, the sky is blue and there’s a gentle breeze now and then. I’m living at a country inn – or at least it feels like it. Mom has wrapped the swing chains in pretty silk flowers, her day lillies are blossoming along the porch railing and she’s made me cozy with lemonade, a fleece blanket and a pillow perfectly placed behind my back.  Dad has made a rare trip out to pick up some Mexican steak fajitas. Aaaahhh. Not a care in the world . . .

Okay. Maybe that’s not true. 😂 It sure sounds nice though, and it truly is. But as you’ve anticipated, there’s more to this story. I’ve been holed up here since March 12th because of the pandemic, I’m being told to seriously start thinking about a double lung transplant, I’m separated from my family, and my body has suffered from malabsorption since acquiring the Norovirus last fall leaving me with atrophied muscles and weight loss.

With chronic Graft versus Host Disease of my lungs, I’m always on guard for infection. When you come to my house there is a sign at each door that reminds family and friends to remove shoes and wash hands. Whenever we have a sickness in the family, we immediately separate; me to the bedroom and the other person to their room, and if warranted, I’ll leave for my parents’ or that child will leave for my parents’.

We were quick to get me out of town in March – as soon as we heard of the first diagnosis of the Corona Virus in our county. Soon after, the kids were out of school and the new pandemic life began for all of us. So, I’ve been at my parents’ for 14 weeks now.  My family and I were separated for 3-4 weeks as I self-quarantined and then they joined me here for 2 weeks. The girls returned to our home with Jonathan’s parents for one week and then the four of them went to Ohio for a week. Later, Jonathan and our son joined them for a week in Ohio and then Jonathan and the kids returned to our home in Tennessee. That’s where they are now. I’m confused by all of that and you are probably too. Bottom line is that there has been a lot of shifting around.

I’m still extremely careful here at my parents’ home and Jonathan and the kids are “reopening” with everyone else for the most part, including Amber returning to working outside the home. The separation from friends was the hardest thing for our teens. Our 9-year-old isn’t at that point, but the girls almost felt like they were missing oxygen. They really held out for a long long time, but boy were they thrilled to see a friend or two when they returned from Ohio. The sacrifice now is me being here and them being home. Jonathan has his hands full! He’s doing a phenomenal job working his own business, taking care of the home and caring for the kids. I do what I can from here, but there’s no replacing being hands-on. I think they are getting into a routine, so that’s making it easier. I miss them so much. Thank God for texting and FaceTime/Zoom!

So, starting last November I started having G.I. problems. I won’t say much about that because I wouldn’t want to know your gross symptoms, so I’m imagining you don’t want to hear mine either. Anyway, it was pretty bad. Normal people get the virus and it goes away pretty quickly – we are talking days, but for me we are talking weeks/maybe months. It’s really unknown exactly what’s going on now. (Update: Friday’s (6/19/20) test shows I still have the Norovirus from last fall.) I continue to have problems and it could be something new, could be the Norovirus is still active (there is no treatment) or maybe it’s aftereffects from the virus. The results of the malabsorption is about a 20 pound weight loss since January. My muscles are atrophied and my strength is pitiful.

At my Stem Cell doctor’s appointment last month, my doctor brought up the possibility of a double lung transplant again. Right before the pandemic, my cardiologist called me out-of-the-blue. I only see him every 6-12 months and I have a very strong heart (thank God for that!), so hearing from him was a little surprising. He said he’d been thinking about me, said I am “young and vital” and that Vanderbilt has a wonderful new transplant physician. He wanted to see if he could pursue the idea with my team. The pandemic hit and I didn’t hear back – a little to my relief. We did the whole transplant work-up 2 years ago, and I was rejected because I needed to be 5 years in cancer remission. That took a great deal of pressure off of me and I was happy to have it behind me.

Now that 5 years cancer-free has come and gone,  they are reopening my transplant possibility. My stem cell doctor and pulmonologist agree it is necessary to consider this again. The main concern is that I’m extremely susceptible to getting a life-threatening infection at anytime. But, of course, getting new lungs is not easy and does not come with any guarantees. Of all transplants, it appears to have a lower prognosis in regards to longevity and I will likely end up with bronchiolitis obliterans (which I have now).

So, we are in prayer about this huge decision. I plan to seek out all the information I can from my many doctors, get evaluated by the lung transplant team and research what I can myself/my family too. Of course, I continue to pray for God to heal me. That would be the best option! To have my chronic Graft vs. Host Disease stop, and any lung damage to be healed or compensated for would be a true answer to prayer. Although, I do pray for God’s will above all things.

I’m honestly tired. Please pray for our decision-making abilities, our strength/endurance in all things and that we will ultimately trust God in the process.

I know this update is a little confusing and the photos are a bit random. It has been a long time! So, just trying to give you a feel for what’s been going on.

Here are a few pictures from 2019 too:

I will keep you posted as things progress. Please pray for physical healing, mental/spiritual well-being and for God’s goodness to be seen in all of this. Ultimately, it is all about Him.

I never posted this. Oh well. It’s only been 6 months . . . It’s Christmastime! Can you believe it? I never do. Ever since I became a mom – 17 years ago – Christmas seems to come around on a faster pace. As soon as we pack up Christmas, it’s time to unpack and vice versa. As soon as little painted faces and costumed creatures come around in search for treats, I know that the starting gun is about to be sounded, and it frustratingly stirs up my anxiety. Isn’t that a shame? I truly hate how the celebration of Jesus’s birth is taken over by the onslaught of perfectionism for the ideal family celebration – basically well meaning but each area overdone; gifts, decorating, parties, traditions, etc. Each good on its own in a measured amount, but they all get hyped-up and completely distorted which leads to a complete distraction of the holiness of the season.  Maybe many disagree with me, but I sure wish we could turn the pace and the volume down a bit. I feel sad that I often feel relieved when Christmas Day is over, and then we can kick up our feet and breathe and hopefully remember to give God the glory he deserves.

I’m at my parents’ home right now. It snowed last night and it is so beautiful on their pond with a couple of snow covered mountains in the distance. My bedroom looks out to the snow through a plantation shuttered window with a Christmas wreath and big red bow framing the scene. Beautiful and peaceful.

I’m here recuperating. My parents home is just a couple hours away from ours and it’s our escape plan when someone gets sick or I get sick.  A few weeks ago it was our son, who escaped here to get over a sore throat and cough. Now it’s my turn. A couple of days after Thanksgiving, I ended up in bed for a week with a stomach bug, while also fighting a cold and experiencing extreme eye dryness with tenderness and occasional pain that was severe.

My stomach is clear now – thank goodness! Now I just have eye dryness and the cough from my lingering cold. It’s good to try to keep this at bay so that there’s no need to go to the hospital or let the situation worsen (which can scar my lungs – making my disease worse).

It’s been kind of a confusing year with my health, but overall I’d say I’ve improved. The last time I wrote, I had had an excellent improvement in some of my lung function testing. Then, the latest test in November showed that same area of testing was back to my original number – and my pulmonologist wonders how real the spring result was even though we retested it time and again bc of the great improvement.

I’ve been all over the map with the practical use of my lungs. At the beginning of the year I had times that I had to use my wheelchair and then at my peak in October I walked on the beach for 30 minutes while Jonathan carried a tank of oxygen on full blast. It was heavenly! If I can crank up the O2, I can do a lot more physical exertion. The practicality of hauling tanks and replacing them frequently is a logistical issue, but at least I can do it with pre-planning! I even walked in my neighborhood a few times this fall which has been years. Its really a canundrum since I can do those 30 minute jaunts when I plan it out, but then I get winded do the simplest task around the house b/c I can consistently bump the oygen up and down depending on every movement I make, so I usually try to consolidate my more physical times where I turn up the oxygen for a while and otherwise try to keep it at my baseline.

Despite the last pulmonary function test in November not looking as encouraging, I’m still praying