Finding Your Voice: Unleashing the Advocate Within (Part 1)

We are heading into the time of year when health is at the forefront of our collective minds. We take stock of what is working for us and what isn’t, and we come up with a plan to move ourselves forward. But what happens when things don’t quite go as planned and we find ourselves with more questions than answers? That’s exactly what happened to a friend of mine back in 2021 and with her permission I would like to share her story about how she found her voice as she embarked on her journey through Lyme Disease.

How This Collaboration Came to Be

Over the last couple of months, I have been communicating with my friend Shelley about her story. As we were talking, I realized how important it is to know our bodies and be able to communicate when something isn’t right. With that in mind, I asked Shelley if she minded if I wrote a blog about her story to share with my Small Daily Habits community. Shelley was honored to share in hopes that it will inspire others to take a leap and advocate for themselves within their own healthcare journey.

Questions for Shelley:

Part One:

• How did you first realize you had Lyme?
• What were your first steps toward recovery?

Part Two:

• What made you go the natural route?
• How long did it take from your first visit to the Dr. to seeing a naturopath?
• What did your day to day look like when you were at your worst?
• What does your day to day look like today?
• What made the biggest difference in getting you from your worst to today?
• What would you share with someone who was just diagnosed with Lyme disease?

Shelley’s Responses: Before Lyme

I was living my best life in the summer of 2021 (well the best you can in the midst of a global pandemic).  What I mean is at 54 years old, I was in the best shape of my life in all aspects (physically, mentally, emotionally and spiritually).  I was healthy, active, vibrant, in love with a wonderful man, living in a beautiful home, had a stable job, great friends and a wonderful family. 

We put our names in the lottery to hike Half Dome in Yosemite in 2020 and won but decided not to travel.  So, in 2021 we tried again and as luck would have it, we won again.  Our trip was planned for 8/22/21 but there was a tropical storm coming up the east coast that day, so we changed our flight and decided to head west on 8/21/21. 

The Beginning:

I remember going to bed on 8/20 and my left thumb had a small red swollen spot on it. I didn’t think much about it because I was so excited to travel again.  The next morning the redness was bigger, but I ignored it because we were going on vacation. 

We arrived in LA and the spot was getting bigger and bigger.  We had a 4-hour drive to Fresno, CA.  I told my boyfriend and his daughter that I needed to go to an Urgent Care because I didn’t want to end up in a medical situation in a remote area of Yosemite National Park. I knew something wasn’t right.  Did I get bit by something?  Was there a thorn or splinter in my thumb? I didn’t want to take a chance.  The Urgent Care didn’t allow anyone to accompany me in there and the doctor thought it was a skin infection like cellulitis. He prescribed Clindamycin HCL 300 MG capsules for 10 days and Mupirocin 2% ointment. Off we went on our adventure and the spot went away within a couple of days and I resumed normal activities. 

September

Then in mid-September, I began getting pain in my upper hamstrings at the bottom of my glutes.  It felt like I was sore all the time from a lower body workout.  I couldn’t figure out what I had done to cause the injury.  Over the next month, the pain moved into my lower back and hip flexor (deep groin pain). Going up the stairs was super painful and going down hurt my quads. Everything just ached. 

November: First Steps

In November 2021, I started going to a physical therapist because I thought I had an injury from working out or hiking.  After 11 treatments, I was feeling no better.  In fact, my symptoms were getting worse.  I still had all the pains described above and was getting tingling and numbness on and off in my quads, calves, forearms, and hands.  I also had muscular and joint aches in my upper body, core, neck, arms and shoulders all the time.  If I did an upper body workout, I was sore for days like I lifted 100 pounds.  I just didn’t feel right.  I had no energy and everything was sore like I did a hard workout every single day. 

December

In December 2021, I tried to get an appointment with my PCP but there was no availability.  They sent me to another affiliated doctor.  He was an older doctor who made me feel horrible.  I asked to have bloodwork done and he hassled me but did Rheumatoid (little high), Parvovirus IGG (high), CBC, CMP, Sed Rate, some Lyme tests, ANA, DNA, C-reactive protein, and hepatitis.  I couldn’t get my PCP to decipher the results, only the nurse told me to find a rheumatologist through Google and call for a referral.  That’s when the frustration started to set in.  Why didn’t they listen to me? Why didn’t anyone care? 

In mid-December 2021, I saw my naturopathic doctor.  She reviewed my results and didn’t think Rheumatoid or Parvovirus was an issue.  She did prescribe a supplement for inflammation and one for antimicrobial properties.  After 2 weeks, I didn’t notice any changes. 

At the end of December 2021, I started seeing a pelvic floor therapist.  We thought it might be the obturator internus.  One appointment per week and no changes except pain in the glutes was gone.  Basically, the pain is widespread over my entire body.  It is worse in the morning.  Then after a month of treatment, we shifted gears to a hip impingement and I was still hurting. 

January 2022

The second week of January 2022, I had COVID.  It was mild but still it caused cold symptoms, tiredness, aches, brain fog, lightheaded.

In late January 2022, my naturopathic doctor did more bloodwork for Lyme, Parvovirus and TSH.  My TSH had been increasing slowly over the past 2 years.  She wanted to retest in 4-6 weeks.  I went on supplements for inflammation and energy loss related to musculoskeletal conditions and still after 2 weeks, I didn’t see any improvement.  

February

By mid-February 2022, the symptoms were getting worse. They consisted of widespread muscular and joint pain, headache, brain fog, anxiety, depression, crying, heart palpitations, fatigue, and weight gain.  My neighbor had Lyme disease and referred me to a Lyme literate naturopathic doctor.  We had a phone meet and greet and he ordered Lyme testing and specialized auto immune blood work.

March

In March 2022, I had my first appointment with the Lyme doctor where I found out I was positive for Lyme and two co-infections (Babesia and Bartonella).  I could have gone the western medicine route and been on antibiotics for upwards of 2 years or try the natural medicine route.  I decided to do Lyme N for 60 days.  It’s a medication that is dispensed through a nebulizer.  I was also tested for mold which was negative.  A lot of people who have Lyme are positive for mold.  My Lyme literate doctor put me on a lot of supplements for inflammation, energy, adrenals, immune boosting.  He did tests for thyroid and cortisol testing as well. 

After finishing the 60-day treatment of Lyme N which was for the Lyme, he started treating me for the co-infections with tinctures. I saw improvements in my energy levels, but my body still ached every day.  I tried so many therapies–neural therapy, acupuncture and PEMF treatments in hips, lower back, mid back and shoulders with the Lyme doctor.  He also tested me for SIBO, did an Organic Acids test, and food sensitivity testing.  Now mind you before all this, I was a healthy woman on no medicines, so all these appointments, testing, and supplements were very overwhelming. 

June

In June 2022, I was referred to a regenerative doctor for my hips and lower back.  The treatment plan was over $8,000 out of pocket that included Allograft injections in the right hip, Platelet Rich Plasma Injections (3), Ozone Injections (4), Therapeutic Laser(12), and Functional Movement (5).  I couldn’t do that and continued my journey to heal and continued taking supplements for energy and inflammation. 

In the summer of 2022, I did a gut healing protocol which I believe repaired a lot of damage I had and started my true healing because 90% of your immune system is in your gut. The nagging hips and lower back lead me to do 15 acupuncture treatment.  I did get some relief but it wasn’t fixing the root cause. 

August

In August 2022, I went on a trip to Glacier National Park where I was active every day. My body felt good in the fresh air and sunshine.  Although my hiking was not as intense as I had previously done, I was out there doing it and felt good.  My gut was improving, and the weight was dropping off.  I started doing hot yoga again and walking more. I knew in my “gut” that something wasn’t right in my hip.  I pushed and pushed for a referral to an orthopedic doctor. 

September

In September 2022, I saw a hip specialist.  He did an x-ray and said nothing was wrong with my hips and to see a spine doctor. 

October

October 2022 I had an appointment with the spine orthopedic who agreed to an MRI. During this time, I continued my gut healing protocol, got my thyroid levels under control, and did some Biomagnetic pair therapy to rid my body of EBV, parvovirus and the flu vaccine. The spine MRI showed mild degeneration of L4-L5, L4-L5 facet joint arthritis, no nerve compression, no instability, no stenosis and the recommendation was to see a physiatrist for possible injections.  When I asked about my hip pain, I got the answer “I don’t do hips—see a hip doctor”.  So back to the hip doctor I went.  I was not giving up. 

Finally, I got approval for a hip MRI with contrast.  Come to find out, I was right.  I did have something wrong with my right hip. I had a labrum tear, and the recommended course of treatment was a diagnostic cortisone shot in right hip one month after MRI to see if it provides pain relief.  I declined that because cortisone can actually do more damage than helping the issue. 

I decided it was time to revisit the regenerative therapy space and contacted that doctor again.  The treatment plan this time was more manageable to my budget because I knew the root cause.  I had 2 platelet rich plasma injections and 8 laser therapy treatments. I also started training at a gym with a personal trainer to get my musculoskeletal system back in balance and strengthen my core and glutes and activate those areas when working out correctly. 

Some supplements I feel that helped flip the switch on my recovery were Fish Oil and Vitamin D.  I really think those 2 combined with the laser treatments helped me tremendously.  I was on so many supplements during that 15-month timeframe and I needed to get back to basics.  Going down the supplement rabbit hole is very expensive and exhaustive.

2023

I needed another boost in April 2023 and started a weekly dry needling treatment which have helped a lot. 

Now in December 2023, I am so much better than when I began, but I am not back to where I was.  I think of it as Shelley 2.0.  This is the new version of me—I know when to rest my body—I know how important recovery is—I know how to set boundaries and say no. 

I think Lyme will always be present in my system but it’s how I deal with it that matters.  I don’t identify as having Lyme but I know that it’s there and I need to manage it.  Staying healthy and keeping my immune system, stress levels, nutrition, movement, and sleep are all critical factors in my daily life.

The Importance of Self Advocacy

WOW! Just listening to Shelley’s story makes me feel exhausted. BUT it also inspires me to advocate for myself at the doctor’s office when I know something just isn’t right in my body. Self-advocacy is an important role to take on for well-being and an optimal healthcare experience. By actively participating in your care, you ensure that your questions are answered, concerns are taken into account, and your treatment options are discussed.

Advocacy empowers you to take control of your health which leads to more personalized care. Effective self-advocacy involves expressing your symptoms, sharing your medical history, and discussing any concerns or preferences openly with your healthcare provider. It helps establish a collaborative relationship, fosters trust, and ensures that you receive the most appropriate and tailored care possible. It may seem like you are going in circles at times but in the end it’s worth it.

Stay tuned for part 2 tomorrow when we dive into how Shelley chose to go the natural route and what made the biggest difference in what got her from feeling her worst to present day.

I hope you are working on your 2024 goals and if anything is going on in your body right now that you add self-advocacy to your list!

Wishing you much love, health, and happiness,

Christine

PS: I am hosting a zoom called on Sat Dec 30th (tomorrow) to help you set and fine tune your 2024 goals. This call is free and will last 30-40 minutes. All you have to do is show up! Get the zoom link here. Meeting ID: 794 7231 2551 and Passcode: Xjau5F

PPS: If you are looking to get a jumpstart on your 2024 goals, start by completing my free mindset workbook.