Allergic to the World

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