page contents
Masthead header

Catching up and Quaranteening

02.06.21

Hello friends! It is so good to be writing to you again. My last post to you was nearly 2.5 years ago just after my trip to NIH. I get the reports each week and have truly been amazed at how many are searching for answers.  Thousands of you have continued to read my older posts and subscribe to receive new posts emailed to you. I have missed interacting with you and just visiting together. There are many reasons why I have not posted and I apologize for it. The biggest thing I want to make you aware of has come over the last year and will help explain why I have not been posting. Last fall was very problematic for me. Long story very short, I was admitted to the hospital several times and given an antibiotic that caused my brain to swell, two different times, November and May! The swelling caused a brain injury. I thought you only got a brain injury for crashing your head into something, not so. I almost died but The Father send a very smart neurologist to save my life. Recovery has been really hard and really slow. I have had to relearn to walk- just to mention one thing. I will be writing more about brain injuries in the next couple of weeks and may even have a few guests to share their experiences as well. I’m very excited to share many things with you.  So I have decided to revive the blog. In fact, I am very excited to not only write to you but perhaps even start a YouTube channel with you to share some quick videos. But all in time. Brain healing is not always linear. So I will start today with blogging and go from there. 

 I last posted of my trip to the National Institute of Health. The short version is the pill camera test I did came back and the doctor who read the test was very familiar with Neuroendocrine tumors or NETs as he worked in NYC with one of the founding fathers in the NETs Community.  Neuroendocrine tumors is a rare form of cancer that is slow-growing but the tumors leak a variety of chemicals that can be very dangerous and even deadly. I have spent the next several years trying to obtain biopsies in a very difficult place, the ileum, which sort of the middle part of the intestines. Insurance will not pay for treatment for NETs, if fact you can’t even see a specialist without pathology. And no one seems to want to attempt to take biopsies. Those that have attempted have been unable to find anything despite the images on the pill camera and also 3 different MRI’s that have lit up. After years of running around from a dozen or more doctors all across the United States, I have been told something I never believed anyone could say to another human, “If it is cancer it will eventually spread to a location that is easier to biopsy.”  What?? Really? Would you say that to your mother? So with no doctor willing to help in the way I need, I wait. 

Today, I want to share with you some thoughts on quarantining and my next post will share some of the best things to do if you are in quarantine. This past spring was a time of confusion and stress for most everyone. Now, it appears as though many are going back to some level of quarantine. I want to share a few things with all of you that will hopefully make it easier for you and your family. 

This March, I was getting some check ups on my medical condition and made a rare trip out of the house for a medical procedure. Several crazy things happened to me that day that made me stop and think.  First, I was needing to make a trip to the hospital and needed a ride. The procedure that I was having done is normally done under anesthesia. I don’t do well with anesthesia or pain meds so I ofter undergo procedures with just a local but this hospital was not as used to me as the bigger medical center I usually go to.  They required I provide  a ride home. As I began to look for a ride, I talked to several people and answered lots of questions. I knew I was making people uncomfortable with the idea of them being anywhere near the hospital and even being around me after having been inside. I was not nervous. I knew the precautions that the hospital staff was taking. Checking everyones temperature before they even stepped into the building, questioning them, everyone wearing gloves and masks, being accompanied to your office and being escorted out when your appointment was over. Many said no, some were out of town. I then found out my good friend was in town and would take me. It all went well and I was surprised the staff remembered me and my skipping sedation. The procedure was quick and I was back outside in my sweet friends car in no time. I knew with the possible quarantine coming up there were a few things I wanted to get done ahead of time. So once she dropped me off I ran some errands.

First, I made a trip to the hairdresser for my first haircut in 18 months. Apparently my thiamin deficiency is why my hair would not grow and continued to fall out. Now supplementing thiamine for 5 months, I had grown enough hair to be able to get a haircut. I walked into the salon and was a site to see as I usually am. I was running my TPN in the daytime so I had my backpack on and IV line running. I was also wearing a mask due to being immune compromised. This was at a time when most people were NOT wearing masks. I made no less than 5 steps into the salon before my hair stylist ask me if I was wearing a mask for my safety or for the safety of others. I shared it was for my safety. We talked while I was getting my hair done. Every person that entered into the salon stopped to ask me if I had Covid. It was a long appointment. 

Next, I was headed to Whole Foods for a few things. As I entered the store it was in quite a condition. My husband and kids and I have a special way to describe stores that look like this. My husband was military for 21 years. We spent most of our time in the midwest. That part of the country is not very used to big snow storms. Whenever a big system was on the way EVERYONE would head to the grocery stores and get their emergency food, milk and bread. The shelves were bare and the store looked like it had been run over by a Mac truck. Thanks to a popular YouTube video, we affectionately call that “milk and breading it.” Well, no big storms brewing that day in Florida but the people were defiantly Milk and Breading it! Everyone had a crazy glazed look in their eyes. I only needed a couple things and milk and bread were not on my list and neither was water so maybe I would be ok. I gathered the few things I was needing but my last item was on a top shelf. After making several attempts with long food items to help me reach the top shelf, I accepted the fact I would not reach it on my own. This is where my 6’4” husband would normally come in handy but he was at work. I began to scan the aisle looking for an employee that could help- to no avail. About this time a very tall man walked by. I said “Excuse me Sir, could I trouble you to reach this item for me on the top shelf?”  He looked me straight in the eye and sternly said “No!” as he walked by. Wow! I couldn’t believe it. He heard me and just did not want to help. I stood in shock and began to try my long food items again. After a minute or so the tall man was beside me again. He reached the item and handed it to me. I thanked him and he scooted off very quickly. 

Finally, I thought I would stop by Sally’s and get some nail polish to do my nails while we were at home in quarantine. Then something unexpected happened that made me want to write to each of you. I walked into the store with my mask and backpack IV still on. The store employee told me there were only 5 people allowed in the store at one time and that currently there was just her and I. They were not accepting cash and a several other store rules. When she finished we began to talk about the gel polish I was looking for. After several minutes, two young ladies, in their early to mid twenties, entered the store. They were talking and giggling back and forth. The store employee and I were down the first isle of the store and were about 12-15 feet from the door where the young ladies were entering. The employee began to tell the ladies about the store rules when they locked eyes with me, froze in place, began to stutter and stammer and then in a blink of an eye they turned and ran, literally ran, to their car. As we stood in disbelief about what happened, the store employee apologized for their behavior then she said “You know, you are one of the sickest customers we have had in here but it is obvious that you do not have Covid. If anyone should be scared I would guess it would be you. I’m not sure why they acted like that.”  I told her that was sweet of her to be concerned for me but it was ok. I told her that being sick I was used to isolation and in a way quarantining for quite some time now. It was the healthy people that seemed to react the strongest and have the hardest time dealing with all of this. It is almost like they didn’t know what to do. As I left the store, I began to think about my morning. Once I was home I hopped on the computer and was checking on all my groups of sick people. All was quiet.  It was then and over the next couple of months that I realized how true what I had said to the beauty store employee was. I have been sick to some degree since the late 1980’s.  This was not new to me but it was to the rest of the world. Of course Covid was new to all of us but how to deal with sickness and isolation was not. Next week I want to share with you some things thatI have found helpful over the last 17 years. I hope you find them helpful. 

All this Covid stuff makes me think about the Danny Gokey song “Haven’t seen it yet” I hope you enjoy it!

Hope and Healing,

Christal Boxberger

Christal
Filed in: Uncategorized
comment
February 7, 2021 - 12:52 am

arletta juergens - love her!

National Institute of Health Visit

02.19.18

National Insitute of Health

Most of you know, last year I had some genetic testing done and, in April, one of the genes came back for Polyendocrinopathy Syndrome (APECED). There are two adult syndromes and one childhood. My GI mast cell specialist contacted the National Institute of Health in Bethesda, MD to see if there were any research studies going on for that group of disorders and there was. They asked for my records to review and, in May, invited me for their next available opening, which was the beginning of February. This is an exceedingly rare opportunity and most people will never experience this. I wanted to write this blog post to share with all of you not only my experience, but also to provide hope for my many friends who read this blog who have a variety of rare diseases.

The NIH is the nation’s largest research facility and also cutting edge hospital with some of the world’s best experts. They specialize in rare diseases and also diseases that are resistant to treatment. Almost all known treatments for diseases today had their beginning at the NIH.
National Institute of Health NIH Trip

On the Road Again

The day finally arrived! I made the trip with my husband. It was a two-day car ride each way as I do not do well on airplanes. Thankfully, Lee doesn’t mind driving. We were concerned about winter weather potentially being a factor at this time of the year as they were expecting an ice storm, but we were covered in prayer and had no trouble at all. It was a pretty drive through many states we had never been to before. We did not have time for the usual sightseeing in the DC area as literally every moment was scheduled in the hospital. I really wanted to visit the new Museum of the Bible but that will have to wait for another time.

 NIH

Security 

We arrived just before dark and were surprised to learn we had to completely unpack our car of everything and go through X-ray. This was not unlike TSA at the airport but it was for everything in the car. Did I mention EVERYTHING in the car had to be X-rayed? We then had to obtain ID badges. We later learned that we could obtain a year pass that was more official and you don’t have to go through X-ray except this first time. We chose to do that, and it was well worth the time involved.

National Institute of Health

These might look like ordinary doors to you but to me, I see a rich history. I see the myriads of people who have entered these doors before me. I see the hope for a cure that they cling to. I see their relentless spirit and unwavering fight to make life fulfilling and to live the life Father God intended for them. I am overwhelmed and honored to be among them.

C88EDE89-DC80-438E-BB7B-BEECFDD40244

C6498BCD-7C79-483F-8F51-4C104E86CA22

BBA78FE7-37A2-4F3B-8FAA-FAA61DB6933E

It is a beautiful building inside where the entire design was centered around the patients and their needs. The courtyards and gardens in the center of the building were planted to provide the optimal experience for those getting some fresh air. The patient wards are on the odd floors only, with all the mechanicals on the even floors as to not disturb patients with maintenance and repairs. You won’t find large doctors’ offices with window views; the windows are almost exclusively reserved for the hospital rooms while the doctors share smaller interior offices. For the staff, this is not a job with lots of money and perks. This is a government facility and, for the providers, this is their life’s calling. They are not driven by insurance but rather the science behind making their patients better.

TPN

There is a lot of artwork throughout the facility, including some interactive pieces. You can see I’m still connected to my IV nutrition. It’s called total parenteral nutrition or TPN for short. This is how I eat now. I have a port and TPN runs on a program fourteen hours a day. When I am out during the day I carry the three-liter bag in my backpack designed just for TPN. When I am at home and overnight my TPN is hung from a hospital pole.

 

I arrived at the NIH with a 4” binder full of medical records and image CDs, which helped the team tremendously. Sadly, that was just my records from the past three years. I have been battling illness, to some degree, for the last thirty years; however, my trip on the crazy train started about fifteen years ago. Needless to say, I have many volumes of records from a variety of doctors all over the US but I only took what I thought was most pertinent. The plus side of taking that volume of records with me was that the NIH doctors didn’t have to repeat the very thorough work up my referring doctor had already completed. I was thanked by every provider for bringing those records and I was surprised at how many of them read the entire thing!

 National Institute of Health

Medical work up

Although much had been done in the years leading up to this trip, it was still a very full week.

  • 79 tubes of blood drawn
  • 458 lab tests…that we have results for so far, and many more in the coming months
  • Dozens of biopsies
  • 2 CT scans
  • 2 ultrasounds
  • EKG
  • Bone density scan
  • Microbiome sampled
  • Colonoscopy
  • Endoscopy
  • Pill camera – which was pretty cool tech for the photographer in me 😉
  • And much more.

Medical team

My team included three APECED specialists, a dentist, Sjorgren’s dentist, ophthalmologist, endocrinologist, hepatologist (a liver specialist), mastocytosis specialist, neuroendocrine tumor specialist, geneticist, gastroenterologist, multiple allergists and immunologists, dietitian, pastor, and about a dozen inpatient nurses. There was also a huge research team I met, and many more I didn’t have the pleasure of meeting, that will all be working hard for me for months or years to come

Rare diseases

Through this experience, I really learned the value of having a large team. The team worked together, and also off of each other’s ideas, and I benefited greatly from that approach. More progress was made in one week than in most years in the past. Often times people with rare illnesses think if they have a primary doctor that is all they need. These are great doctors doing great work but honestly probably not all you need. When doctors are in medical school, they are taught about all sorts of rare illnesses but then are quickly told that most of what they will see in their careers will be common, everyday ailments. They are told, “When you hear hoof beats – think horses, not zebras.” So, the majority of doctors out there are not looking for, testing for, or thinking about rare disorders. But zebras do exist. In fact, there are a lot of us out there. That’s why places like the NIH, Mayo Clinic, and hundreds of specialty clinics like The Center for Excellence in Mastocytosis exist. Even if you have a primary doctor and a specialist, it may not be enough. For example, according to the CDC, 29 million people in the US have diabetes, roughly 9.3% of our population. Unfortunately, diabetes is commonplace in our society. These patients should have a primary care doctor and an endocrinologist but may also need a dietician, podiatrist and ophthalmologist. Five doctors to manage one of the more common diseases in our society today. How much more help is needed when you have a rare disease that has most likely taken years to diagnose and progressively gotten worse?

Zebra among Zebras

One of the NIH specialists recently proclaimed “Christal, you are a zebra among zebras. You may be the only one like this in the nation.” I thought about that for a moment and replied “I’m not a zebra among zebras. I feel more like Bigfoot.” Bahaha! Since that time friends and family have made Bigfoot my unofficial mascot. This cute little guy accompanied us on the trip

Although you just have to laugh sometimes when dealing with such heavy matters as serious medical issues, day in and day out for years on end, you do need to also take a serious approach to doing everything in your power to get better and live your life to the fullest. With this in mind, I would like to encourage my fellow zebras out there to assemble a team to help you live life to the fullest. EVERYONE was happy, helpful, and so incredibly brilliant. We are so very impressed with how well run everything is. The normal stay is four days but after reading my records they knew I needed six days at least. Once I was there, they asked me to stay longer but I was unable to. My local doctor will finish up ordering some MRIs and nuclear medicine tests that we did not have time to finish before discharge – mostly due to the metal pill camera that captured more than eight hours of video. She will send the results on to my coordinator and everything will undergo a final review from the team before they make a report and send it to me. Many of the tests that were performed while I was inpatient are genetic and take a couple of months to obtain the results.

If you would like to learn more about the National Insitute of Health and some of the work they do there, you can watch Discovery Channels three-part documentary titled “First in Human.” Narrated by actor Jim Parsons from “The Big Bang Theory,” and filmed at The National Institute Clinical Center, or Building 10, which is where I was. The story follows four patients who are participating in the first in human trial, the very first time a treatment is tested in humans. I did not participate in any trials during this visit as they are still diagnosing all my conditions but several of my providers were in the film. Most cable companies offer this series free on demand if you have Discovery Channel.

I have been discharged from the hospital and I am back home in Florida recovering. They have some basic answers and direction on some of the more prominent symptoms but it will take time to confirm. If there is one thing I am learning through all of this it is patience. I’m ok with waiting for a little bit. The last thing I need at this point are more misdiagnosis. It appears there are several rare conditions going on simultaneously that need to be untangled. Later this month, I will be the topic of a conference where many allergists and immunologists will see if they can figure out some of the bigger immune problems. I am filled with hope as the days pass and I continue to receive results. I leave you with these verses from Romans 15; they are what I cling to today.

For everything that was written in the past was written to teach us, so that through the endurance taught in the Scriptures and the encouragement they provide we might have hope. May the God who gives endurance and encouragement give you the same attitude of mind toward each other that Christ Jesus had, so that with one mind and one voice you may glorify the God and Father of our Lord Jesus Christ. May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:4-6,13

Hope and healing,

Christal
Filed in: diagnosis | genetic testing | port | Road trip | TPN
comment
February 21, 2018 - 11:58 pm

Arletta - I’m so happy that you got to go to one of the best places in the world for help! Thank You for sharing your experiance with us. I love you so much! Stay Strong Honey!

February 22, 2018 - 12:09 am

Sharon Brumbeloe - Praying and believing 😃. You are my hero!

The C Word

02.20.15

Cancer cells

Cancer is no Stranger

It would be difficult to find someone today whose life has not been touched by cancer. Unfortunately, this group of diseases is pervasive in our society and around the world. According to The American Cancer Society, or ACS, there will be an estimated 1,658,370 new cancer cases diagnosed in 2015.

At the young age of five I became acquainted with this horrible disease when my grandmother’s life was taken by breast cancer. I was in kindergarten and I remember crying each day during nap time. My teacher would ask me why I was crying but I could not muster any words. We were very close and I was devastated. As an adult, my father-in-law died of liposarcoma and my grandfather died of kidney cancer. However, well over a hundred friends and family members have been diagnosed with cancer, successfully completed treatment, and now live cancer-free. I also was an eyewitness to a miraculous and instantaneous healing of a woman with cancer at a church altar. Another woman I know was diagnosed with breast cancer and, after much praying by the warriors around her, the doctors could no longer find any trace of the disease.

The Worst Day in your Life

I have recently joined the club where no one wants to belong. Members feel bound together by what they have in common. They become instant friends and share things they normally would not with a complete stranger. I have heard story after story about the worst day in their lives, the day they found out they had cancer. While the stories are horrifying and filled with intense emotion these things are not what makes the stories challenging to hear.

D

The C Word

Arguably, I would say the day you receive your diagnosis of cancer is not the worst day of your life. The day you are diagnosed is not the day you got cancer. A person has had cancer long before the day a doctor uses the c word. Most people have some symptoms and are undergoing testing to find out what is wrong. The day you are diagnosed with cancer is one of the best days of your life because this is the day you can begin to do something about it! This is something I did not have the benefit of for a very long time. According to my new doctor, I may have had undiagnosed cancer for 15 years. Likewise, I struggled for many years before I knew that I had a mast cell disease. I have met countless people over the years struggling with life altering or incapacitating symptoms searching in vain for an answer. When you don’t know what you are up against you can’t do anything about it. If you don’t have a diagnosis you can’t begin treatment.

The Fight

I would say the worst day in your life might be the day you quit living life, I mean really stop appreciating all the beauty, goodness, and opportunities around you. Maybe it’s the day you let things come before people or when you quit believing in miracles. But beyond all those things I think the worst day of your life is probably the day you give up fighting. Recently my friend Nicole over at allergicchild.com told me about a book she is reading called You are the Placebo by Dr. Joe Dispenza. She shared a story about a man who was told he had cancer and was dying. He got worse and worse until they found a drug that would make him better. As he began to take the drug he, in fact, got better. When he was told the drug was not making any difference he got worse again and then died. When they did the autopsy they found he never had cancer to begin with. I have not personally read this book yet but think this story makes a valid point about hope, mental disposition, and the will to fight and live. Now, I’m not saying positive thinking is the answer to all of life’s problems. If that were the case no one would die and only grumpy people would be sick. However, I do believe the mind is very powerful, God made the human brain more amazing than we know.

Carcinoid cancer

Treatment = Hope

There are lots of reasons for hope today. New treatments, advances in technology as well as scientific breakthroughs all provide better outcomes than ever before. The ACS reports a slight increase in the occurrence of cancer between 1975 and 2011 yet the fatality count is greatly reduced. There is a treatment I hope I will be a candidate for called targeted therapy. Genetic testing is done on the tumor to determine which gene is malfunctioning and which proteins are being given off. Then a drug is made specifically for that tumor, so it will not return. As science progresses more and more treatments will become available.

The Struggle is Real

We will always have problems. This is not heaven. What is it that you face that seems bigger than you? Are you being called to do something waaaaay out of your comfort zone? Are you struggling with finances, relationships, addiction, or attitude? Honestly, most people will struggle with all of these issues and more in the course of their lifetime. The question is not if we will struggle but rather how we deal with the struggle when it comes.

Strength

When challenges come where do we find the strength to deal with them? Do we call on our family and friends? If so, what happens when those people, well-meaning as they are, let us down in our time of need? As much as people love us they are human, after all. In May of last year we found out accidentally that the swelling and constriction in my throat got significantly better after being at the beach; perhaps due to the lack of tree, grass, and weeds that make me so sick. After moving to Florida and looking at houses on or near the beach I have been reminded over and over again of a song I learned in children’s church many years ago. It talks about two men. The wise man built his house upon the rock while the foolish man built his house upon the sand. The rains came down and the floods came up and the house on the sand went splat! (Can you picture me doing the hand motions? ) It’s a simple children’s song that exemplifies a very big principle. If our source of strength is built on the wrong foundation, when troubles come our world will crumble and fall. I place my trust in The Rock, which trust me is not an actor in Hollywood.

Psalm 28.7 The Lord is my strength and my shield; my heart trusts in him, and he helps me.

My heart leaps for joy, and with my song I praise him.

My new Birthday

The day I was told I had cancer was not the worst day of my life. January 20, 2015 was the best day and represents a new beginning. It is the day I could start my journey back to health. It opened the door to new treatments and options that have never been available to me in the past. The road that lies ahead of me will no doubt test my perseverance, strength, and determination. It will also provide opportunities for those that surround me to love, help, and support me in heroic ways. It will provide me with healing, either through the hands of a gifted surgeon or at the hands of My Heavenly Father.

Beyond Me

The months ahead are very much beyond me and my abilities. This is the latest song added to my Soundtrack of Life, which is a compilation of songs that speak to how I think and feel as I make my way through my life each day. I leave you today with Toby Mac’s song “Beyond Me.”

Hope and healing,

Christal

 

CANCER.ORG Cancer Facts and Statistics 2015 | Research | American Cancer Society In-text: (Cancer.org) Bibliography: Cancer.org,. ‘Cancer Facts And Statistics 2015 | Research | American Cancer Society’. N.p., 2015. Web. 13 Feb. 2015.

Did you enjoy this post? Have future posts delivered via email

* indicates required



Email Format


The information contained on this blog is not intended or implied to be a substitute for professional medical advice. This is my experience and for informational purposes only. Please seek the advice of your physician regarding treatment for any medical condition.

 

 

 

 

Christal
Filed in: carcinoid | Things God is teaching me
comment
M o r e   i n f o