A lack of posting to this blog can only mean one thing… good things are happening.
Again, I (Avery’s mom), am updating this page because Avery is busy. For those of you familiar with the life we have led the past five years, you know that it is rare for Avery to be busy. She became skilled at appearing to be busy… posting pretty pictures on social media of a rare occasion outside of her bedroom or turning down invitations claiming she had been “running around like crazy” and wasn’t up to an upcoming event. The reality was laughable. We had to laugh because crying didn’t do any good.
Avery’s social media pictures were always lovely – all smiles and the cool places we visited. She didn’t explain that a shower once a week warranted a photo, or that her mother arranged concert tickets as often as possible because music seemed to be the only thing that could bring a type of normality to our lives for a few hours. Her “running around like crazy” excuse meant she may have left the house for a couple of hours that week, most likely to a doctor’s appointment(s) or high school sporting event, and there was no way she could muster the energy or ignore the pain again to go out anytime soon.
My daughter lost a chunk of her life. From 11th grade until just recently, the year she should be graduating from college, time stalled for her. Her peers attended high school parties, beach week after graduation, started (and are finishing up) college, made new friends and attended college events, worked and gained employable experience, etc. For a while, Avery tried to keep up. She went away to college but was so sick she came home after a semester. (Looking back, she was so very ill that it is hard for me to imagine that she stalwartly suffered through those months as she did.) Imagine living back in your childhood bedroom doing nothing when your classmates have all moved on… because of this stigma, we tried to be “normal” again the next fall. Avery moved into an apartment, got a part-time job, and registered for two community college classes. We thought the independence would bring happiness, however that fall once again brought the wrath of the disease. Avery dropped one class, then the other, then she could barely drag herself across the street to work for a few hours… we brought her back home. This was the wake-up call for us all. It no longer mattered what Avery’s classmates were doing with their lives. The ONLY thing that Avery could do at that time was to work on healing. This meant another two years of living in her parents’ house and not participating in life.
Avery watched as the rest of her family went on with day-to-day living, and she measured time with her medication schedule and TV show recordings. As a mom, I tried to improve the quality of her life in any way possible… it was so lonely and boring. I needed her to eat healthy, clean foods – so grocery shopping, prepping and cooking something for every meal took up tons of my time. Because Avery often couldn’t get herself to the kitchen, she was unable to serve herself… much less cook for herself. I visited with her every morning in her room before I went to work, I came home in the early afternoon to spend a few minutes, and I spent evenings with her – cooking, talking, watching tv, or playing a board game. Basketball season was always a wonderful distraction since it was warm in the gym and games lasted an amount of time that Avery could handle. Besides the occasional extended family meal, basketball games were the only socialization she received. I’m thankful for my friends at the games who embraced the need for understanding and easy conversation without the common questions of how Avery was spending her time and what her future plans were. These were questions that led to embarrassing answers – Avery did nothing with her time and had no future plans! Again – laugh because crying did no good!!!
These days, the memories of how our lives used to be are a little cloudy – almost like they were just a bad dream. For those of you who follow this blog and want to know how Avery is doing, she is moving forward, she is doing, she is LIVING!
Avery’s Personal Life Updates:
* Avery has been living on the Eastern Shore of Maryland with her boyfriend, Dan, the past couple of months and plans to stay there until Dan enters the Navy in the New Year. They have been working on his cool, old house and have adopted two kittens who give them much entertainment!
* Avery’s brain is working! Those of you familiar with Lyme know that Lyme brain is a significant neurological challenge. Avery complained throughout high school of becoming “dumber” each year, not smarter. She just finished her first semester back in college taking an online Anatomy and Physiology course (she ended up with an A!!!) and A&P II will be next semester. Hopefully as her confidence continues to improve, a regular course load of classes will be coming soon.
* Avery is exercising! Getting herself off the sofa, walking up the stairs, or taking a shower used to be as physically taxing to her as running a few miles would be to a non-runner. Avery has joined a gym and is elevating her heart rate – she’s been doing weight training, cardio, and yoga!
* Avery is making music! Without the need for excuses, Avery has been out sounding great, playing both with Dan and the Jared Stout Band.
Avery’s Medical Life Updates:
We met with Dr. Hollis of Valley Integrative Medicine in Roanoke, VA several weeks ago. Issues of concern are:
* Mold lab indicators
* Low iron
* Return of endometriosis pain
* Difficulty weaning off anti-depressant
* Low thyroid numbers
* Weight gain / difficulty losing weight
We left the office with a clear plan and good feelings. Dr. Hollis is kind, personable, and very knowledgeable – she is a fabulous resource. So far, the supplement adjustments and prescription changes have been very positive. Avery has had some new blood work done and a follow up with Dr. Hollis here in a couple weeks.
Avery continues to use the AmpCoil regularly, running a “cleanse” every other day and supportive journeys on the off days. After attending the AmpCoil Summit and hearing how parasites significantly hamper those with compromised systems, Avery encouraged us all to do a Parasite cleanse regularly. Both she and my son are more than halfway through the 10x parasite cleanse, and interestingly, both have developed Bartonella markings – Avery has had other Bartonella symptoms lately, but we had not pieced them together to determine the cause. It is not known that the appearance of the marks is related to the parasite cleanse that both are doing, but it is known that Bartonella will be targeted on the next cleanse – and mold, per Dr. Hollis!
I wanted to personally thank you all for supporting my daughter on her journey to wellness. Those of you struggling with tickborne disease know the toll it takes on a family all too well. Avery may never be 100% well, but we are so thankful that we have been able to maintain a sense of normalcy the past couple of months.
Avery and I both look forward to keeping you all updated with the next news we receive!
“Even though I walk through the darkest valley, I will fear no evil, for you are with me; your rod and staff, they comfort me.” – Psalm 23:4