From Sick to Survivor and Beyond

A couple posts ago I wrote about how I was having a hard time finding my place in the world.  I was feeling lost, but figured that if I just put myself out there and talked about it, maybe it would help to manifest something new and good in my life.

And that is exactly what happened.

I started thinking about going back to school to learn more about health, but I wasn’t finding quite the right thing that piqued my interest.

Shortly after that post a friend of mine called.  We were chatting about health, as she works for a supplement company and has so much knowledge to share.  After the call, I knew that I wanted to go to school to learn about herbs in healing.  Ah ha!  An herbalist!

After days of pouring over information about different programs, I did find a Master Herbalist program, as well as a Natural Health Consultant certification.  It will take two years, a lot of reading (which I love doing!), and it is a schedule I can handle while homeschooling my son and running my business.  YAY!

IMG_20160724_155600It has been interesting being a student again, but I am loving it!  I have had a few mornings that I have woken up at 3:00 am because I was excited to read and complete my assignment.

As for where all this will lead?  Not sure yet, but I have been talking to people about Lyme and Autism for over three years now, so surely there is a place for me to do that on a professional basis.  I will see where the path goes!

If anyone had told me three years ago, in the height of despair and illness, that I would be in remission and going back to school in a few years, I would not have believed it because honestly I didn’t know if I’d survive at all.  Staying positive and focusing on one day at a time helped me to keep going.  I’m so thankful for this new adventure!

Finding My Place

One of the biggest struggles I have had my whole life is finding my place.  I have never really been able to figure out where I fit in with the rest of the world – I have only had a sense when the place I was in wasn’t “it.”

Through all the health troubles that I and my family have had over the years, and these troubles have been many, I have never felt like I fit in with any of the groups that are affiliated with the problems.

I was the only person I knew that was 28 with a pacemaker/ICD.  I was in a cardiac rehab program with people that were 50-60 years older than I was, and many were in better shape than I was.  It was isolating, but I worked through it.

My son has Autism, but he is just barely on the spectrum.  He doesn’t qualify for services, though we do things ourselves anyway.  I have been told by a fellow Autism mom that I don’t understand what it is like to have a child with the level that her child does.  Again, isolating!

Lyme Disease – well, this one is tough because all 3 of us have it. Friends don’t understand it.  Most of the family completely tuned us out during the diagnosis of it (which was just after my son’s Autism diagnosis).   We were all isolated, because we were all so sick at one point that it was hard to figure out how to function at home, never mind how to talk to others about it.

We are also of a different mindset than so many others with chronic illness, in that remission was never a dream – it was a goal that would be achieved.  That is in no way a knock to our fellow Lyme warriors, it is just a mindset that we have and it isolated us a bit from the Lyme community.  Sometimes the pain and despair of others was too scary to let into our circle – vibes matter – and we have to protect ourselves from things that can bring us down.

As for myself, I realize that this comes across as a bit bratty, because we are re-gaining our health.  It is just awkward when you are in a club but not a life-long member.

I was supposed to have a procedure done on my heart a couple weeks ago – link to story here – but we were unable to proceed because of a clot in my heart that has not dissolved quite enough yet with the medication.

The week before last we did a pre-op appointment and found out the status of the clot.  In the end, I made the decision to turn off my ICD completely.  We will wait until the clot dissolves to go in and have my procedure to replace the ICD completely, as the battery is almost dead, and there is a risk of it malfunctioning if the battery is too low – which it dangerously close.

I am now walking around with a diagnosis of Ventricular Tachycardia (VT) and no safety net in case my heart decides to race.

Once again I am in a waiting game with my health.  This is a game I have been playing all my life, and honestly, I think I have finally reached the end of my patience with it all.  I don’t feel brave anymore.  I don’t feel scared, either.  It is like I’m floating in some kind of limbo and all I feel is lost – I don’t belong anywhere.

I am at the cusp of the heart issue being over.  My family is in remission from Lyme.  The last ATEC (an Autism questionnaire to help figure out the part of the spectrum a person is on) barely qualified my son with Autism.

These are all good things.  AMAZING things.  But, I realize that I don’t know where I fit in.  How does one transition from sick to survivor?

I do know that I appreciate life more than I ever would have if I had never had my personal health problems.  I have talked to others with Lyme that are in remission, as well as those that are in remission from Cancer, and they say the same thing.  I think only those that have experienced a few rounds on the dance floor with the Grim Reaper truly understand how good it feels when he leaves the dance.

But (there is always a but), I don’t know what to do with myself now.  Where do I channel the time and energy that was previously used to heal, research, and (frankly) worry?  Who do I connect with that would understand this phenomena?

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Over the past couple years I have developed an intense interest in Reiki.  After receiving several powerful healing sessions with my dear friend that is a Reiki practitioner, I started to feel that it was something I wanted to learn more about.  I struggled a bit, because I do not want to do anything against God – but I am at peace with that as Reiki is not based on religion, but is a type of healing by channeling energy in the body.

I have signed up to receive my Reiki 1 attunement, and earn my certification.  It will be amazing to be able to use some of my experience to help in the healing process of others.

My love for essential oils has continued to grow, and I study them all the time.  Their healing power is amazing, and I enjoy using them in my home with my family.  I’ve also enjoyed spending time with others that are using them and finding similar success.

I’ve signed up for a gardening class that hopefully will lead to some new friends and activities outside.

Hopefully I will find my place.  Physically I am there – moving to San Diego was an important step for my family to be able to heal, so hopefully the emotional place is soon to come.

Thankful Thursday ~ This One is for the Healers

NaturalHealth

The past 20 years have been anything but easy in terms of health.  As we move forward after years of chronic illness and prepare to enjoy remission, I want to make a post to thank the healers that we have worked with.

Thank you to the nurse practitioner that ran a Lyme test on Poppy as part of some bloodwork when he was having a “summer flu” that dragged into the winter.  We had no idea he had checked off that box on the test, but if he hadn’t, we would not be in the spot we are now.  It was the beginning of answers.

Thank you to our first naturopath that we worked with in New Hampshire.  We went to her for some help with Autism symptoms for Poppy, and she was Lyme Literate – VERY Lyme Literate.  It was this naturopath that took the time to educate us and made us realize that the initial 6 weeks of meds Poppy had been on were not enough.  These Autism symptoms?  LYMEChronic.  Not just him, but all of us.  Good pick up, Dr. C.  Let the long-term treatment begin.

Thank you to our naturopath in California.  It can’t be easy to pick up where another doc left off.  We were a bit of a mess when we arrived here, as the guys were on antibiotics that were not quite right for where we were in the journey.  There were other symptoms going on, and she worked with us to figure out how to get the treatment plan ironed out.  We’re now in remission, and she continues to work with us to fine-tune our health so we stay in this good place.  She is amazing, and one of my heroes.

Thank you to our massage therapist.  When we started treatment for Lyme and were herxing on a regular basis, she would come to our house and help our bodies to detox and relax.  She introduced me to Reiki, which is becoming a passion of mine, and CranioSacral Therapy, which is amazing for moving out the brain fog.

Thank you to our chiropractor.  I had never been to one before, but I think my family hit the jackpot when we found the person we are working with.  He is gentle, does not believe in doing multiple adjustments each time, and he understands chronic conditions.  Our chiropractor also took the time to explain the philosophy behind what he does, which is helping the body to support itself and be strong.  He believes in giving the body what it needs to fight off illness, which is our belief as well.  Detoxing became much easier, my sleep is a much better quality, and I am calmer than I was before.  A healthy nervous system and well-aligned spine definitely contributes to better health!

Thank you to our biomagnetic pair therapist.  I encourage you to research this modality if you have not tried it.  Magnets are used to bring tissues of the body back to an even pH level, making it inhospitable to bacteria, virus, and fungus.  For those with Lyme – it DOES cause a herx – but if you are doing your detox protocols it is manageable.

Without anyone mentioned here we would not be in this good place with our health.  A lot of the battle when trying to heal from illness is to find healers that you are comfortable with.  When this does happen, enjoy their gifts and the healing that comes with it!  Thank you to this amazing group of healers!

Thankful Thursday – Lyme Remission

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A year has passed since I wrote my Lyme story, and I figured it is a good time to write about the journey to remission since then.

When we left off in the other post, I was feeling a lot better.  It was June of 2015, and I had been doing the “killing” phase of treatment since March.  My family opted to use essential oils for our main treatment, and did other supports like vitamins, a gluten free diet, cut back on sugar, and eat organic food.

In the beginning, the herxing was intense because we were actually starting to kill this stuff.  We spent a lot of time sleeping, reminding each other to detox, and fighting off aches and pains that come from the disease itself.  There were migraines, nausea, sweating more than you’d think is possible, and having no temperature control in our bodies.  This happens with most protocols that are really killing things off, but with oils you can control your own dosing to dial down the herxing if you need to.

I stepped up the detoxing protocols BIG TIME, and that helped to get through the initial die-off.  When that was over (about 8 weeks into it), the brain fog was not nearly as bad as it was and we started to have some real good days!

As we started to see success with our protocol, we were able to add additional supports as well as herbal tinctures to peel out more layers of the infections.  With the brain fog being much better, I was able to focus and really hone in on ways to help each of us continue to heal.

The herbs I used included HH2 and A-Bart for Bartonella, Artemisinin and A-Bab for
Babesia, and a few tinctures that my Lyme doc formulates for system support.  These were all complimentary to the essential oil protocol we used.

By October of 2015, it was rare to have a bad day.  We were still slightly affected by the moon cycles, and noticed that were tended to feel lousy on full and new moon, but other than that were were feeling great!

We continue to support our healing by finding ways to fine-tune our bodies.  We visit a chiropractor weekly, and have seen a difference from that.  The nervous system is dependent on the alignment of the spine, so if things are being blocked from a subluxation, it can be detrimental to the nervous system and our healing process.  I personally notice less headaches, better sleep quality, and better posture.

We added biomagnetic pair therapy.  You can read more about it here.  This helps tremendously with lingering arthritis in my hands – I was able to start knitting again!

We have also tackled bacteria overgrowth in our intestines after being tested by our Lyme doc.  She wrote a great article if you are interested.

I’ve also started meditating, and having regular reiki sessions.  This helps me keep my mind clear and calm.  Also, staying positive is HUGE in the battle with Lyme.  You’ll never get better if you don’t get yourself to a positive place.

Last, it is important to rest as much as you need to.  If I tried to push to do too much while healing, it would always set me back.  I had to learn to say what my limits were and not feel bad about it.

We do still use our oil protocol on a regular basis, as we are so nervous to back-slide that we have decided to keep things the same for a while until we are ready to go on a full remission protocol (a different pulsing schedule for oils/herbs).  We’re okay with that!

In summary, this is what we did to arrive at remission:

  • Essential oils
  • Clean diet – organic, no gluten, low sugar
  • Herbs and tinctures
  • Chiropractic
  • Biomagnetic pair therapy
  • CranioSacral Therapy
  • Meditation, reiki, and positivity
  • REST

Since remission, I have been able to get to know many of the people I have met since moving to San Diego.  I now have two jobs – I do admin work for a friend from home, and I am growing a business.  I’ve also continued to homeschool my son and take care of our home.  Life is moving forward, and it is exciting to not have Lyme be the primary focus of each day.

As for what lies ahead for my family, I am hoping that it is continued health and healing.  We have gone through so much with this disease, and we were blessed to find things that worked for us to arrive where we are now.  I am thankful for each day that we feel better after years of suffering with no diagnosis.

Each person is different and unique, and what worked for us may not work for you.  I encourage you to read about as many treatment types as you can, and don’t be afraid to go outside the box if you do decide to try something that is unconventional.

It is really important to find a Lyme doctor that you are comfortable with, keeping in mind that they may not be close to you geographically.  Contact ones that you think may work for you and ask if they do Skype appointments, as many do.   Keep in mind that most doctors do not take insurance due to the politics behind treating this disease.  Find out more here:  lymedoc.org

Reach out if I can help you!