Won’t you join me there? @thepersonnexttoyou
Won’t you join me there? @thepersonnexttoyou
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?
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.
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? LYME. Chronic. 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!
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:
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!
Credit cards. I wish I could tell you that we are able to do every single thing that Dave Ramsey says and cut them up never to be used again, but the thing is, we can’t.
Lyme Disease has been financially devastating to our family. Gone are the days of a savings account with six months of emergency fund. Heck, we’re lucky to have a 401k account right now, but honestly we would rather carry credit card debt and work hard to pay it off than to cash out the 401k.
Thankfully, before Lyme treatment started to hit our finances hard, we were excellent with our money, had savings, and paid things off monthly. I had mastered using the credit card with the best rewards programs, cash back, and zero percent offers if we needed some extra cash.
The great thing about this is that when we fell into these hard times, we had such solid credit that we have been able to use our cards to pay for treatment. Yes, we maxed out our two cards, and had to apply for more cards. We maxed those.
That is how I learned the credit card game. Some of you may know this game. Max a card, apply for a new one with a good balance transfer offer (we were getting 0% for 12-18 months for a 2-5% fee). So, get new card, transfer the oldest card’s balance to the new 0% card, and use the card with the new zero balance to charge the upcoming treatments.
Vicious but necessary cycle.
And we made it through it.
In the fall of 2015 we suspected Lyme remission, and we were able to slow down on some of our treatments, which saved us some money. I began to see that expenses were slowing down, and knew it was almost time to develop a plan to start repaying three years of treatment for 3 people.
I made a spreadsheet that was in order of when each credit card was due, and the amount. I then used the principles of the debt snowball and figured out a solid plan to get these credit cards paid off.
In January, we started our new budget, which was a bit of a tighter grasp on where our money was going – not that we were wild with our money at all because there wasn’t any. I also picked up a great gig doing admin work from home, as well as sharing the story about how essential oils have helped my family in supporting our health as we recovered from Lyme. People have wanted to share in my good fortune with that, which has helped us recover a little faster financially.
As of tonight, we have paid off a little over $11,000 of credit card debt since January and have not accumulated more because of our budget and the extra income. We currently have 7 balance transfers we are working on paying off that are on 4 different credit cards, and in July I will be making the final payment on one of those transfers. Yes, we still have a long way to go, but we are on the major progress side of things now, and I am thrilled.
The credit card game is not easy to play, but we would have been in absolute financial ruin and would have had to declare bankruptcy, not to mention that we would not have been able to get treatment if we did not have credit cards. They are not always a bad thing, and in our case I feel blessed that we have them. This is a game we are winning.
2016 has certainly been a challenging one for me so far, and I have been holding back on blogging about this because we didn’t know the cause behind my health challenges that have come up… then Wednesday happened.
Since stories should start from the beginning, I will back up to that point and explain from there.
On January 8th, I woke up during the night with my heart pounding. It was not an arrythmia, thankfully, though I have an internal defibrillator (ICD) to correct such things, but nonetheless my heart was not right.
I did all my old tricks to try to make it stop – carotid massage, laying on my left side, coughing, drinking a bit of almond milk… and it wouldn’t stop. I finally got up and started walking around and trying to calm myself down so I didn’t freak myself out, and ended up pacing through the house for most of the night.
This went on nightly for a week, and I finally contacted my primary care doctor, which as any Lyme patient knows can be the worst. It is often the beginning of being passed around to several specialists of whom tell you that your tests are inconclusive, or they diagnose you with things that you KNOW you don’t have – it is an uneasy feeling. But, since I was exhausted from all the nights of not sleeping, I rolled the dice and made the call.
After speaking to the nurse, the doctor herself called me back and instructed me to go to urgent care which is about a mile from my house. She said to tell them that she wanted them to keep her posted as I did a quick cardiac work up there so she could make quick decisions of what to do.
I had bloodwork, a chest x-ray, and an EKG. I quickly picked up on the fact that they were trying to tell if I was having a heart attack. Yes, you can walk around like that and many people, women especially, ignore heart attack symptoms if they are not acute enough.
When it was determined that this was not a heart attack, my doc set me up to have an appointment with a new electrophysiologist, since I was a new patient with this hospital. She also ordered an echo of my heart to be done.
In the meantime, I began to suspect this could be related to my adrenals somehow, and contacted my Lyme doc, as she helps not only my family’s Lyme, but also my son’s Autism, all our anxiety, my hormones, and we even follow her nutritional guidance as she wrote a book about it.
We began to look at my adrenals. I did the full saliva test where I put spit in a tube throughout the day, and did bloodwork to measure hormones. Turns out my cortisol was elevated at different times than it should have been, and she put me on supplements which have helped so much! The only thing was, if I was even a little bit late on taking my supplements, my heart would start this racing pace again. Something still wasn’t adding up.
Back to the cardiology side of all this… I had the echo a few weeks ago. I had delayed it due to feeling a bit overwhelmed, and I was adjusting well to the adrenal supplements. I have been so tired from all this that I was trying to compartmentalize some of this stuff so I could mentally process it all.
The echo came back showing what appeared to be a chiari network, which in short: “The Chiari network is mobile, net-like structures occasionally seen in right atrium near the opening of inferior vena cava and coronary sinus. This is usually of no clinical significance…” (You can read more here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3809461/)
It was also determined in this time that the battery was running low in my ICD, which has wired that run from the device into the wall of my heart. This means it was time for a relatively minor surgery to have the replacement – except now we had this chiari network in the way of the surgical area inside the heart.
About 10 days ago, I started to have some pain in my heart. I though it could be stress, but sent a message to my heart doc to let her know of this development, as I have also gotten to the point that I am taking a 2-3 hour nap every afternoon. I literally can’t keep my eyes open. She had me come right in to see her, and they did an EKG.
She listened to my heart a bit, too, and ordered a trans-esophageal echo (TEE). This is a test where they numb your throat, give you very light sedation, and put a camera down your throat so they can take pictures of your heart without ribs, muscles, or the sternum in the way.
This TEE revealed that I do not have a chiari network, but I actually have a blood clot inside of my heart, and it is on the wiring for my ICD. We had scheduled the surgery for this, and it was supposed to be next week. This is now being delayed.
I am on a medication that is supposed to help dissolve this clot. I will have another echo in a couple weeks to see if the size of the clot has reduced. Then we will decide if it is time to have the ICD replaced, as of course now we are in a race as the battery is almost out on that. I am at risk for Ventricular Tachycardia, so I depend on my ICD as a safety net to shock my heart back to normal rhythm should VT happen.
That brings me to today. As you can read, the last several months have been full of medical detective work, and thankfully I feel that between my primary doc, my Lyme doc, and the electrophysiologist (cardiologist that deals with heart rhythm issues), we are getting it all sorted out.
Yes, I am a bit freaked out. Scared? You betcha. But, as with all things health related, I am trying to put one foot in front of the other and not think too far ahead.
I hope to get back to blogging, as it really is a sort of sanity for me. I also joined Instagram, so feel free to follow me over there, too. It has been fun to be part of a new social media community! @thepersonnexttoyou