Lyme Disease and Covid Are Not for the Faint of Heart

“Healing takes courage, and we all have courage, even if we have to dig a little to find it.”

— Tori Amos

BIG UPDATE!

I HAVE BEEN WORKING ON THIS UPDATE FOR WEEKS AND THINGS KEEP HAPPENING THAT I HAVE TO HOLD OFF COMPLETING THE UPDATE. THE LATEST THING TO ADD TO THIS UPDATE IS I TESTED POSITIVE FOR COVID ON JANUARY 12. IT HAS BEEN REALLY TOUGH. MY ASTHMA SEEMS TO BE HAVING A FIELD DAY WITH ALL OF THIS AND THE COUGHING IS INSATIABLE. WE CHECK MY O2 AND TEMP EVERY HOUR. MY O2 HAS GONE UP AND DOWN AND I SEEM TO CONTINUE HAVING A LOW GRADE FEVER. WE TRIED TO GET MONOCOLONAL ANTIBODIES, BUT DESPITE ALL MY COMPRIMIZED SYSTEM AND ISSUES, I STILL DIDN'T QUALIFY. I THINK I AM DONE GOING TO WAKE FOREST BAPTIZED RELATED FACILITIES, THEY ARE RUDE, INCONSIDERATE, AND HAVE NO BEDSIDE MANNER. FOR EXAMPLE THEY MADE ME CHANGE INTO A GOWN WITH THE DOOR OPEN. THEY ALSO DIDN'T WALK WITH ME AS I USED MY CANE TRYING TO KEEP UP. I HAD TO HOLD ONTO THE WALLS BECAUSE I WAS COUGHING SO BAD, I KEPT FEELING LIKE I WOULD PASS OUT. EVEN MORE, ONE NURSE WAS GOING TO FAST AND NOT WAITING ON ME THAT SHE WENT THROUGH A SET OF DOUBLE DOORS THAT REQUIRES ACESS CARDS. IT TOOK A HOT MOMENT BEFORE SHE CAME BACK THROUGN THE DOORS TO GET ME. I AM NOT SURE WHAT AURA I GIVE OFF BUT THE MEDICAL PROFESSIONALS SEEM TO HATE ME. ANYWAYS, PLEASE PLEASE BE PRAYING, IM PRETTY SICK AND HAVENT HAD IMPROVEMENTS IN FIVE DAYS. If your wondering about the mask it helps calm my asthma. HONESTLY, PLEASE KEEP THE ENTIRE ERVIN HOUSE IN YOUR PRAYERS. THANK YOU SO MUCH! NOW FOR THE UPDATE:

There have been so many things that have happened since my last update. I tried to wait till things calmed down to type one up, but things just keep on coming.

Review: as I wrote in my previous update, I had to go to the ER to get my port re-sutured from a stitch that had popped. Though that was a long day, we left feeling confident things were good to go. Unfortunately, a week later, while mom was changing my bandage, she noticed that the stich was undone, not popped, but literally just untied. We packed up and headed to the ER again. They were rude and accusatory that I made the stitch come untied. Then the doctor who was hopefully going to fix the situation failed to use sterile practices while checking the stitching. Furthermore, once he began to resutured he “numbed” me, but I was not numb because I felt the needle pierce my skin. He even asked me after stabbing me, “Oh, you can feel that?” and continued suturing, rather than trying to numb again. Essentially, I felt every single stich, poke, and jab. He also decided that even though the stitching he was fixing, done by a a precious doctor in his ER, came untied, that the other side was nothing to worry about. Then the nurse used a product we told everyone including him not to use because I was allergic and even when he was using the wrong thing and I asked him to stop, he used it anyway, therefore causing several chemical burns. Following that visit for weeks my port area hurt every time I moved. It was awful and these sutures are supposed to last for months. I couldn’t imagine having that pain for months, but I hoped the pain would just pass over time.

During the time of the second ER visit, I had began my next protocol. After the first day I was much sicker than in the past. The second week was the “kill zone” week. During this time, I was extremely sick, probably the sickest and in the most pain that I have been in with any protocol the entire treatment, minus a few very memorable nights in July…

While doing the hardest part of my protocol, my aunt who had been in the hospital that so many had been praying for(thank you by the way), passed away less than a week before Christmas. We have had such loss in my family that this was like a massive punch to the gut and my heart. I related a lot with my Aunt Joni. She prayed for me diligently every day. She sent me card after card, encouraging me through this treatment. She would always read my updates from beginning to end. Made it worth at Create the posts that I work so hard to create. She always loved individually. She is very very missed. Because her passing was so close to Christmas, the family receiving, service, and funeral were after Christmas.

My parents and I tried to make the best of Christmas by joining my sister and her family. Seeing the kiddos joy and bright faces opening their gifts, gave a bit of light with a pretty tough situation.

The day after we had the receiving and the following the funeral. All of the above things mentioned with addition to many other things going on with my family and extended family made it difficult for my body to recover. I actually slept the day after the funeral for fourteen hours on and off (more on than off.) That's a big deal for me!

For New Year’s my parents and I went to my sisters again. I am so thankful that the Lord allowed them to come back to the states during this time, because having them around, seeing the kids is one of the main things helping me hold on and pushing through with treatment.

The first week of January I had an appointment with my Specialist. It went well, but also things are really not where we would like them to be. My Specialist is still very concerned with the growing amount of pain I have. It seems that things that were horribly painful years ago, are reverting back to that magnitude. The Specialist told me though it is not fun for me, that some of the pain means my immune system is trying to fight Lyme Again! Hard stuff but

a weird positive. Again, with that said, the doctor is still very concerned with the amount of pain I am in on a constant basis. The Specialist also gave me another week off of treatment to work on pain management and further detoxing. I am working on several of the recommendations my Specialist mentioned/prescribed to help with pain management

My doctor also gave me another week off of treatment to work on pain management and further detoxing. One way I am working on pain management, is through seeing reflexologist. The first appointment went very well.

We have a couple to several more protocols treating with IV. Once I am done with the IV portion, I will begin an aggressive oral antibiotic stage. I was unaware of the costs outside of the IV antibiotic treatments. I have to pay outside of the office treatments for lactated ringer bags, flushes, heparins, tubing, IV Zofran, with again the tubing, flushes, heparin, and tubing. Furthermore, because I am allergic to the regular components included in the bandage packets, I have to order each piece individually which really adds up! Moreover, as stated from the beginning of this shindig, my medications that I take every day on a regular basis, cost more than $1,200 dollars a month, which includes the medications that insurance covers and as well as all the out-of-pocket medications.

All this to say, that even with all the overwhelmingly generous support over the last year plus, I am out of funding. We are paying what we can and trusting God for provision to supply my treatment financial needs. I am hoping to try to put together a few fundraisers to help out with all the costs. If you have any ideas or feel lead to host a fundraiser, please contact me. I know so many have given so much already, times are tough, and money is tight for almost everyone, please consider it and contact me if you are interested.

I have some ideas of fundraisers, but it is very difficult while treating to be attentive to really much of anything outside medicine and being sick for now. Recently, a local church donated money as well as an individual that covered the cost of almost a third of my most recent appointment with meds, which is a HUGE help, thank you so much! (You know who you are.) Moreover, another generous individual has pledged to give a percentage of her earnings each month. I KNOW that that is not something that everyone can do, but I say this to thank those folks, but also to mention ways others have thought up to help support me in this journey financially.

Lastly, as many of you saw, on Sunday, I was in the ER again. This past weekend, when mom was changing my bandage, she noticed that the suture on the right side was no longer attached, the one the previous ER doctor did not give any thought to. So, we packed my supplies, because I can’t use the bandage materials the hospital provides, and were off to the ER. But we went to a different ER than the two visits in December. I had to be in the ER waiting room by myself this time around; while Mom waited in the car. With my surge in pain, this visit was difficult. The wait was long and for some reason my legs haven’t been working well, complicating walking and adding to the stress of the situation. Just for fun my body also started herxing while in the waiting room, but I couldn’t do anything other than curl up in the wheelchair. Once, back in my room, an amazing physician with many years of surgical experience resutured both sides. In fact, he told me that he was going to remove all the sutures left in my chest that weren’t removed before with the other ER doctors. He essentially, started the suturing from scratch on both sides. I am confident that he did a great job, and these sutures will last a long time. I’ve been more sore because of the removal and new sutures on both sides, but I am healing well with little pain.

Monday night we had a scare with actual sobbing and crying out with intense pain, but called a nurse (my sister) and were able to resolve the issues. There are always a slew of other things going on, so I always appreciate your prayers.

I was supposed start my next protocol next week, January 17 through the end of the month, including the “kill zone” week which is very intensive. But now I have to push treatment back till the following week, January 24, if I have recovered from Covid. It

A few pockets of joy over this period of time have been the children with all their great joy. Further, a close friend of mine and his girlfriend visited, bringing beautiful flowers. This visit was especially special because I got to meet my new friend in person for the first time. AND before they left they prayed over me, really powerful stuff. Also, I started recording “Jesus Calling Conversations” on mu YouTube channel. I have always felt God highlighted the very things I needed for the day through the short devotionals. I am excited to begin reading Jesus Calling for others to join in the journey of what God is speaking to each of us individually. Furthermore, my sister also gave me this neckless to represent a blue sky day until I have my own. Such a beautiful, thoughtful, and sweet gift. (One of my favorite Christmas gifts!)

I know that this is a long post, but I had over a month full of tough situations and pain to update so many of you who have been faithfully supporting me with prayers, love, and even financially. Even the influx of encouraging cards and messages sent early into treatment, have lifted my spirits. I actually hung all those cards on the wall, so that as I open the door to my room the first thing, I see are those cards and the love and prayers behind them.

As ALWAYS, thank you so much for all those who prayed for my Aunt and are continuing to pray for me. I truly appreciate all the ways you are supporting me!

Please be praying for:

-for a, quick and full recovery with no lasting effects

-also for the coughing it starts and takes a while to get my lungs to calm down.

-relief of intensive pain

-my lung and cold (or whatever I’ve got)

-my inflammatory markers from my blood work still being extremely high

-endurance and courage with this upcoming protocol

-for provision in finances to cover treatment

-the overwhelming weight of all that has transpired in the last month and a half

THANK YOU, THAT YOU, THANK YOU.