New Normal

It has been awhile since I shared an update on Billy’s ongoing health issues. Mostly because it is apparently a medical mystery and the diagnosis and answers continue to elude his Doctors. It is frustrating, but we are slowly adjusting to the uncertainty of this “new normal”. 

With the global pandemic of COVID-19, new mutations of the virus being seen in other countries, social distancing, masks, lockdowns, rumors of election tampering, and an apparent intentional bombing on Christmas in Nashville, it seems we are all facing the unknown! I take comfort in knowing that God sees the entire picture, even when I don’t. He has a plan to get each of us thru whatever lies ahead, even when we can’t imagine how.  

Billy continues to struggle with chronic back, leg, and nerve pain. He still has all of the same stomach and GI issues. Unless God intervenes, they will be lifelong concerns. He will continue to have regular procedures to monitor the situation and remove any polyps or new gastric Neuroendocrine tumors.

He was supposed to have Parathyroid surgery due to years of elevated parathyroid hormone (PTH) levels. However, during the pre-surgery work up, his PTH levels were normal. Several labs following that were also within range. The surgeon did not want to proceed with surgery because she felt there were too many uncertainties and the risks outweighed the benefits at that time. Now, his PTH levels are high again. His situation has always been a little strange and not a typical presentation of hyperparathyroidism. Multiple Doctors have been consulted about it, but none seem to have a clear answer. Since it has not caused any bone loss or dangerous levels of calcium in his blood, we have decided to hold off on surgery for the time being.

We found out about a month ago that he has multiple abnormal labs concerning his iron levels, and is anemic. The GI Dr. believes it is due to the autoimmune atrophic gastritis. His Endocrinologist is going to talk with a Hematologist to be sure.

He is also still having the severe episodes that cause sudden blood pressure spikes, tachycardia, extreme anxiety, and a bunch of other crazy symptoms. They have not been able to confirm or rule out a pheochromocytoma on his adrenal gland. He is currently on 2 different medications that are commonly used in pheo patients. So far, they are keeping his blood pressure and heart rate from elevating to dangerous levels. Unfortunately, he still deals with the awful symptoms on a daily basis. His Endocrinologist is trying to get the VA to approve him to see an Adrenal Specialist that he knows at the University of Michigan in Ann Arbor. He said it may take awhile to get them to approve it, but he has started the process. 

 Now that you are up to date on all of that, we found out a few days ago about another issue that sounds pretty serious.

They found an abdominal aortic dissection of the iliac artery. Don’t feel bad, we had to look it up too. 

He had a scan Wednesday for GI issues. They called a few hours later and told him what it showed and gave him a list of symptoms that he should watch for. If they occur, he should go to ER immediately because it could mean a rupture/aneurism and be life threatening. Scary stuff. The GI Dr is the one that called. An abdominal aortic dissection is not in her area of expertise, but she felt like they’d likely address the problem quickly. It will probably require surgery. She sent a message to vascular surgery, but we haven’t heard from them yet. I’m sure Christmas delayed things. Hopefully, someone will call us in the next few days.

So, there ya go... the saga continues! More challenges and no obvious solutions. It’s hard to live in the shadows, where you can’t see the path ahead clearly. We spend most of our lives assuming that we have some control over the uncontrollable. Life humbles all of us at some point. Nobody ever said it would be easy... but, God said He would never leave us. We know that He is a problem solver and a way maker! We choose to walk by faith and not by sight. 

If you haven’t heard Brantley Gilbert’s song... Hard Days... click the link below and check it out! The Hard Days sure do make us appreciate the blessings!

Is there anything greater than a Mother’s love?

June 8, 2008. There are pivotal moments in life when everything changes. You know what I’m talking about. An event that frames everything else. There’s the before it happened, and the after. Sometimes, whatever it was is joyous.  Other times, it’s heartbreaking. 12 years ago was one of those life changing days for me. It was by far, the hardest day of my life. On June 8, 2008, the person I’ve loved and depended on since before I was even born took her last breath on Earth. I had to say goodbye to the only person that I knew would always love me. When Mama left, it shook my entire world and my sense of security. Unconditional love is rare. It should be something that every child gets from their parents. Sadly, that’s not the way it is. Some people never experience the absolute and pure love that my Mom gave me. I’m so thankful that I had her. I knew how special it was, but honestly, I don’t think I truly appreciated it until it was gone.  It was in my darkest moments without her, that I finally comprehended that the only unending and unchanging relationship I will ever have is with my Creator and Savior. When I felt alone, afraid, lost, and hopeless... there was Jesus. Grief is a powerful and crippling feeling, but my God is stronger. When I’m weary from fighting the battles, He’s there to remind me that He already won and that He did that for me. There are no words to ever say how grateful I am that He chose Mama for me... and that He loved us enough to make a way for us to be together again forever. Mostly, I am overwhelmed by the fullness of His love for me and His constant companionship. I don’t deserve it and I can’t understand it, but I don’t think I would’ve survived this long without it. In my happiest memories, there was Jesus. During the storms and devastation, there was Jesus. What a blessing to never have to walk alone!

If you’ve never experienced unconditional love, there is Jesus. If you need someone you can count on, there is Jesus. Whatever you need, He is the answer. If you don’t know Him, I would be honored to introduce you. 

https://youtu.be/VZXRIw5uBuY

My DIY advice: Don’t Do It!

It’ll be easy, they said. It’ll fun, they said. It’ll only take five minutes, they said. WELL, I’m not sure who “they” are. The only thing I DO know, is that “they” lied...

Covid-19 is creating chaos around the world. These are crazy days we are living in. Quarantines are mandatory, toilet paper is being hoarded, and cleaning supplies are scarce. My face hasn’t seen make up in days. Sweats and a t-shirt means I’m dressed up. I’ve spent way too much time watching tv, scrolling Facebook, and saving all the easy Pinterest projects that I’m never going to do. 

About that... I saw a 5 minute recipe for Do it Yourself hand sanitizer that only required a few ingredients that I already had. I figured I could whip it together and reuse some empty travel bottles I had kept just in case I ever needed them.
 

 

I mixed the alcohol, aloe vera, and essential oil together with a whisk for 5 minutes, just like the directions said. Nothing was mentioned about the gross glob of plant fibers that had formed in the bowl and would not separate. 
 

I refused to be defeated. I decided to try using an empty water bottle in hopes of shaking loose the slime ball. So, I transferred the bowl blob into the bottle and started shaking. Surprise! That didn’t work either. Then, I noticed the blender bottle that I used for my morning protein shake. It was just sitting on the counter like a great big bright idea and beacon of hope. Sadly, that little metal ball was useless in the fight. Still, I continued to shake until I thought my arms might fall off... but, the evil clump of junk was still clinging together. 
 



 



At that point, my 5 minute DIY project had stolen an hour of my life that I would never get back. I was not a happy camper. I also had never been a quitter, and wasn’t about to start. So, I broke out the big guns. Those little beaters on my electric mixer worker their little steel selves at high speed for at least another 15 minutes. 

 

 



Either the contents evaporated, or were lost in the mixing splatters all over my counter. In the end, my 1 cup of ingredients produced 1/2 cup of “finished product.” 

 



YES, I know there are still floaties.

NO, I don’t care!

It never turned into gel like it was supposed to. It smells like straight rubbing alcohol. There’s not even a trace scent of the lemon essential oil.

Obviously, I am Domestically Challenged. My attempt at making my own hand sanitizer was less than satisfactory.

SO, here’s a SHOUT OUT to purell, germx, and all of the other companies out there! THANK YOU for making those cute little bottles of crystal clear antibacterial gels in an array of happy scents. I appreciate you and will never complain about paying a dollar for the tiny miracle again!

Good Luck to all of the brave quarantined souls out there who want to give this a try. My advice would be to skip it. If you are unable to purchase the coveted hand sanitizer, just wash your hands with soap and water until they completely dry out... and carry around a bottle of rubbing alcohol for times when washing isn’t an option.

 

Trust me, it’ll save your time, sanity, and dignity! You're welcome!

He has blessed this Mess!

Here's the fine print:
It occurred to me that many of you knew me "back in the day" and are well aware of my history of bad choices. I have made many decisions over the years that were not honoring to God and went against everything I believe in today. So, I felt like I needed to add some "fine print" to my previous posts for clarification.
I know the consequences of choosing the wrong path. I've taken that road. I know the pain of separation from God because I have lived it. I know that selfish behavior leads to destruction because I have taken part in destroying good things. I am ashamed of the mistakes I've made, the people I have hurt, and the chaos I've caused along the way. Once the damage is done, you can never go back and change the outcome. I'm not an expert on righteous living or marriage. I've failed at both. However, I am qualified to tell you who God is because of all He has done for me. He has forgiven every bad thing I've ever done. That's why I want to share Him. Not because I think I have it all together, but because I know I don't. I am a deeply flawed human being saved by the grace of God. I hope y'all know that when I share from my heart it is because I have walked from the darkness into His light. A life in his presence is so much better than what I ever had on my own. I still mess up. We all do. Please don't judge the message by the faults of the messenger. God's truth is absolute. He wants our whole heart. He wants to come first in our life. I'm not perfect, but my God is. He is worthy of our love and adoration. His truth will change your life if you let it and are willing to live your life according to it. Again... I am a mess, but I am HIS mess... and He has blessed this mess more than I will ever deserve or comprehend. I will be a work in progress and under construction until I reach the gates of Heaven. I believe the key to living a life that brings glory to God is to continue working towards His purposes and never give up. We may stray from His path at times, but His truth will guide us where we are supposed to go if we choose to follow it.

Health Status: It’s Complicated.

Just wanted to update everyone on Billy. His situation is complicated, but we are heading in the right direction 😊

The Doctor finally called today with the pathology results from upper/lower endoscopy. They didn’t see any new neuroendocrine tumors in his stomach, the colon “polyp” they removed was just scar tissue, and other than some inflammation from chronic autoimmune atrophic gastritis, he said that overall everything looked ok. If there are no new problems, will go back to the GI Doctor in March and discuss when he should follow up with another endoscopy and colonoscopy to monitor the conditions.

We recently met with a surgeon about his parathyroid issues. We also discussed the possibility of removing an Adrenal gland in the future. She seemed to be very concerned and said that she believes that he does have a Pheochromocytoma that has just not progressed enough to confirm. She told us that she is really interested in finding the root cause of all of this and has studied his case at length. She confirmed that his situation is really complicated with lots of factors to consider. Due to the complexity, they want to wait until after he’s had the genetic testing done before they do any surgery. If he does have one or more of the gene mutations, it would likely change what they decide to do surgically. 

We have an appointment to meet with a genetics counselor towards the end of February to discuss which genetic testing should be done. The surgeon said they specifically requested them to check for MEN1 & MEN2 (for Multiple Endocrine Neoplasia), but they may add others as well. So, it’ll likely be several months before we have enough information to make a plan on the best way to proceed. 

We are so thankful for all of your prayers and know they are being answered. We seem to have a surgeon that has a passion for neuroendocrine and Adrenal issues and it feels good to know that she has taken a special interest in his case. She understands the hidden potential dangers of MEN and is considering the entire situation before deciding what to do next. We have tried numerous times over the last 2 years to get them to do the genetic testing because if he has certain mutations, it changes so many things about treatments, surgery, and screenings. They kept telling us it was expensive and unnecessary. Now that his case has been assigned to the surgical department, she understands that he has multiple areas of concern and that could mean he has one of the MEN mutations. If so, she needs to know that before surgery to make a plan to deal with whatever they find when they get in there to look at his parathyroid, as well as how they proceed with the potential of a Pheochromocytoma. So, it’s a huge answered prayer that she requested the genetic testing and we will have the ability to make more informed decisions based on the results. 

We praise God that no new significant concerns were found on the most recent pathology report!! With everything else going on, that is a huge relief. He continues to bless us more than we will ever deserve! 

Thank you all for your love, concern, and encouragement over these last few years. We truly cherish your prayers as we continue to navigate this complicated web of health issues. 

Today is a precious gift, and we are so grateful for it ❤️

UPDATE: PRAISE GOD! All of the genetic testing they did came back negative! We are so thankful. We still don't have many answers, but this is a huge answered prayer!

“We should certainly count our blessings, but we should also make our blessings count.”

—Neal A. Maxwell

Updates on Billy’s health issues

Just wanted to share some updates about Billy for those that are interested. As you know, the last few years have been rough. It seems he’s been dealing with one weird health issue after another. I know that some of you don’t want to read a long explanation with all of the details, and that’s ok. For those that do want to know specifics, it’s easier to put all of the information here instead of repeating it multiple times.

He is having his yearly endoscopy and colonoscopy today. Good times! He has had a hard time with these procedures in the past. From anesthesia not working well enough to finish the procedure, blood pressure and heart rate spikes before they even start, really long recovery times, and ER visits after it’s over from nearly passing out. He needs specific medication and IV fluids immediately after to minimize these complications. We would appreciate prayers for an uneventful day and good results! 

They have to do regular scope procedures for several reasons. The colonoscopy is to monitor the Crohn’s Disease and remove any polyps they find. It will have to be done every 1-2 years or sooner depending on the severity of symptoms. The endoscopy will likely be done yearly, but could be more often depending on the situation. It needs to be done for multiple reasons. First, he has an autoimmune gastritis that causes his body to essentially attack the lining of his stomach. It is considered a precancerous condition. That doesn’t mean it will cause stomach cancer, but it does increase the risk. He also has low stomach acid. Higher acidity is needed for proper digestion. Having an alkaline stomach ph like he does can cause problems. It also makes his body produce high levels of gastrin. The combination of issues is likely what causes his body to produce gastric Neuroendocrine Tumors (NETs). He has already had several NETs removed over the last few years. Thankfully, they have been low grade and not aggressive. They usually don’t even know they have removed a neuroendocrine tumor because they are so small. They do a mapping process where they take biopsy samples from multiple areas in his stomach. The pathologist reviews the specimens and uses a special solution to test for NETs and do staging. So, we usually don’t know if there were any NETs or other precancerous concerns found until we get the report about a week after the procedure. As long as they are only found in his stomach and continue to be the same type of NET, they only have about a 5% chance of metastasizing. However, there’s always a chance that they could become a more aggressive type and if they did grow or spread, they would likely go to his liver. If they ever find any NETs outside of his stomach, that would also be a huge concern. So, careful follow up and frequent screening is necessary. 

He continues to have crazy episodes that cause surges of Adrenalin, elevated blood pressure and heart rate, extreme anxiety, dizziness, stomach issues, and more. He experiences a wide range of symptoms daily. They vary in duration and intensity. They started him on a medication that seems to be helping control the blood pressure spikes. He still has them, but they haven’t been as severe and don’t last as long. Unfortunately, all of the symptoms are still there. He has learned to deal with them better, so that helps. They haven’t found enough evidence to support a diagnosis of a Pheochromocytoma (a type of neuroendocrine tumor on the Adrenal glands), but they haven’t completely ruled out the possibility. Sometimes, it takes many years to find a pheo. We will be talking with a surgeon about the possibility of removing the Adrenal gland that could have a small tumor. Billy is desperate to feel better, so he is open to that idea. I don’t feel comfortable with them removing an Adrenal gland without more evidence.

In addition to those issues, he’s had some abnormal hormone levels over the last several years. His parathyroid level has been elevated consistently. The parathyroid consists of 4 tiny glands behind the thyroid. It controls the calcium levels in your body. When it isn’t working properly, it can cause too much calcium in your blood which creates a host of problems. It can also draw calcium from your bones and lead to osteoporosis. So far, his labs show high normal calcium levels and his bone density scan is normal. For those reasons, they haven’t been that concerned with the parathyroid issues since the other problems have been more severe and they’ve been focused on that. However, his endocrinologist said that it is strange to have such an elevated Parathyroid hormone (PTH) with normal calcium levels. Usually, when the PTH is high, it’s caused from a tiny benign tumor on one of the glands. They can remove it laparoscopically in an outpatient procedure and it’s not a big deal. They finally did a nuclear scan to try to find which gland the tumor was on. However, the scan didn’t show a tumor and it showed the same amount of uptake in all 4 glands. That could mean that the scan just wasn’t able to see the tumor because of its size and location. That would be the best case scenario. The problem is, it could also mean that all 4 glands are malfunctioning. That could be caused from Cancer. It could be related to even bigger endocrine problems.

There are several genetic mutations associated with NETs. One of them is of the MEN genes. If a person has this mutation, they are at a much higher risk of having Multiple Endocrine Neoplasia (MEN). Basically, that means increased potential of multiple neuroendocrine cancers in several places, often at the same time. With his history of gastric NETs, symptoms of pheo, and now the parathyroid issues, this is a legitimate concern. The VA hasn’t wanted to do any genetic testing because it’s expensive and there is no family history that we are aware of. However, with all of the recent developments, they decided to schedule him an appointment with a genetics counselor. That  will be next month. Hopefully, they will agree to some of the genetic testing. If he has any of the mutations, we really need to know that. It would change how often he has testing and follow up, what types of tracers they use in scans, and even what treatments they would use.

He has an ultrasound scheduled this week to try to get a better look of the parathyroid area. We have a surgery consult scheduled for next week to talk about parathyroid surgery. I think they will recommend surgery. They just may not know what’s going on until they get in there. Hopefully, it’s a tumor that can be removed and not a problem with all of the glands. 

He’s also continuing to deal with chronic back/leg/nerve pain. Obviously, those are not problems that carry the potential threats that the other things do, but they still significantly impact his daily life and ability to do the things he wants to do. He’s recently started doing Alpha Stem Therapy with a device he uses at home. It’s supposed to have lots of different health benefits. Hopefully, it will  relieve some of his pain and maybe even help the other issues too.

We are trusting God with all of these things and trying not to worry about things we can’t control. My friend, Wendy, used to say that it already is what it is. The Bible tells us that worrying won’t change a thing. God knows every detail of whatever lies ahead and we know He has a plan to take care of us no matter what the circumstances are. It is what it is... BUT, He IS who He is. 

If you feel led to pray for him, here are some specific requests:

• That there will be no complications with his procedure today and no Neuroendocrine Tumors or other new areas of concern.
• That he will be able to have the parathyroid surgery and it will be routine and they will not find any cancer. 
• That they will agree to do genetic testing for endocrine related disorders, and that he does not have any of the mutations. 
• That God would give us wisdom on how to proceed with the Adrenal issues given the slight possibility that he may have a pheo that they haven’t yet been able to confirm.

Behind the Mask of Depression

Multitudes of people are impacted by depression and anxiety both directly and indirectly. Depression causes indescribable loneliness. Even when surrounded by family and friends, a person may feel like they are in complete exile. The slightest thing can cause a wave of emotion and lead to unstoppable tears. It brings a flood of memories and irrational thoughts. It can turn a strong, capable, independent person into an unrecognizable mess. The depressed person knows that their pain doesn't make sense to anyone else. They learn to fake normal. They use a smile to hide the truth. When someone lives with depression and anxiety, they learn that others don't deal well with the craziness. People are uncomfortable with the vulnerability. Many don't even want try to understand such honest and raw emotion. Those suffering from depression feel things deeply. Those feelings are often so intense that it's hard to process them. They don't know what to do with the pain and there are no words to explain it. So, they put on a mask and attempt to hide the internal battle from the world. It works for a while, until it doesn't. Then, they isolate themselves to prevent anyone from seeing their weakness. If they open up at all, it's only about small things and doesn't even scratch the surface of what they are really struggling with. Eventually, they can't hide it and there is no escaping it. So, those closest to the one suffering from depression see the cracks. They see the broken pieces of a damaged heart start to crumble. At first, loved ones try to offer comfort. However, they are quickly frustrated at their inability to fix the problem. They may find it easier to avoid the person until the "emotional episode" passes. Unfortunately, to the person in a depressive state, it makes them feel abandoned, unworthy, unloved, and absolutely alone. Those feelings just add fuel to the raging fire storm they feel inside.... and the sad cycle continues. Depression isn't logical and it can't be reasoned away. When a person is feeling crushed by it, they know it doesn't make sense to feel like nothing is wrong and everything is wrong at the same time. They don't want to burden the people they love with their unhealthy and unmanageable thoughts. What they need is compassion and support even when it doesn't make sense. What they want is someone to be the voice of reason and to remind them of who they are when they have forgotten. If you care about someone who suffers from this lonely and sometimes disabling condition, the best thing you can do is be there for them. You don't have to understand it. You don't have to fix it. But, your willingness to walk with them through the darkness just might be the tiny light that leads them to hope and healing. Be an encourager. Be a light in someone's life. Be the hands and feet of Christ. Show love to those who are hurting. True love is healing, it's powerful, and it never fails.