Weekend, Please Be Good to Me

This week has not been the greatest.  It was too busy for me, Ivan has been sick (but hey! at least his immune system is fighting it), Poppy and I are herxing, and the guinea pig is not doing well again.  Back to the vet today, and another touch and go weekend ahead of us as we nurse him back to health (we hope).

Today Poppy’s knee slid out of place again, but slid back in.  Still, he was scared shitless.  The kid does a minimum of a half hour of PT exercises every day, and goes to clinic twice a month, so at least the knee went back in place.

We don't want this to happen again...

We don’t want this to happen again…

This next thing may seem like a “first world problem,” but I mailed a package to Mom in NH, and it seems to be lost.  It has been three weeks now.  She knew most of what was in the box, but some stuff was a surprise.  It has been driving me absolutely crazy that this box is missing.  Yes, I have talked to the post office… there is nothing they can do to physically find this package.  So, I have started recreating the package so I can re-send it.  That is the only way I am going to be able to put this whole thing behind me.  Things like this burn in my brain and I can’t let them go… Mom, I know you are reading this and you keep telling me not to worry about it, but my brain doesn’t work that way for stuff like this!  So, readers, send an email or Tweet St. Anthony for me, because my prayers have not worked.  ;-)

This is supposed to be the weekend of the monthly Autism Mom group lunch.  I don’t know that I will be going, because I am completely exhausted, and I am on my last spoon.  (Look up the spoon theory if you don’t know this reference.  We are all spoonies in our house.)  I feel tired and worn down, and some depression is creeping in – I know this is courtesy of Bartonella – damn bully.

I want to try to relax this weekend.  Drink coffee, watch 80’s movies with the family, and nap in the hammock.  I know this wave of anxiety and depression will pass quickly, so I am just letting it move through me so it doesn’t end up owning me.

Weekend, please be good to me.

Treatment Tuesday ~ My Lyme Story

Of all the things I write about here on my blog, I realized that I have never told my Lyme story.  I have been asked many many times, and I suppose it would be good to put it out there.  Maybe it will help someone else that is on the same path with trying to get answers from doctors about what is going on with their health.

I was born with a hole in my heart, and had an open heart surgery when I was five.  As a kid, I seemed to be prone to medical problems, and had many surgeries by the time I was 10.  I knew what a ventricular septal defect was before I knew how to play with Barbie dolls.  Sounds dramatic, but it is true.

As a teen, I always had issues with my heart racing.  I figured out (on my own) how to do Carotid Artery massage to minimize the episodes (slow my heart down), as well as drinking milk or eating a banana as soon as possible.  Even if it was only a mental thing, it worked.

For the Lyme part of my journey, I will start here:

*I don’t remember ever being bitten by a tick, but we were avid hikers. 

From 1996 to 1998 I had spells of extreme dizziness.  Eventually I was diagnosed with “Benign Positional Vertigo.”  This eventually resolved itself, and was replaced with extreme gastrointestinal pain all the time.  After ultrasounds, medications, and even talking to a therapist (docs thought I had too much stress), it eventually subsided after… YEARS.
Looking back, I think that this was the beginning of my Lyme journey.  I think the dizziness was Lyme, and the GI issues were Bartonella.

Fast forward to 2003.  I had never felt right after the vertigo.  My stress levels were always very high, my stomach would upset easily, and I was afraid of everything.  I went through periods of not sleeping well.  In early 2003 we went on a ski trip, and ended up with Bursitis.  I was put on… you guessed it… Prednisone!  Then the shit REALLY hit the fan and was never the same.

Not realizing that any of this had anything to do with Lyme Disease, I found out I was pregnant in May of 2003.  For the first seven months of my pregnancy, I felt better than I had ever felt in my life.  I was hungry (typically my appetite was and still is small).  I was sleeping.  I felt happy, hopeful, and aside from one day of nausea, things were great.

During my seventh month, it all fell apart.  I started getting searing headaches/migraines.  I couldn’t sleep.  My heart started racing, and I ended up in the emergency room with tachycardia (320+ beats/minute).  I was admitted, given a partial electrophysiology study (where they test the electrical pathways of the heart), and put on bedrest and beta-blockers for the rest of the pregnancy.

In early 2004, Poppy was born.  My health issues were not over.  Still having anxiety, tachycardia, not sleeping (even for having a new baby), and was afraid to drive in case I had one of these attacks in the car.  In April of 2004, I had a second complete electrophysiology study, and found out I needed an ICD.  That is a pacemaker with a defibrillator built in, you know –  in case my heart decided to rocket out of my chest again, I would get a “shock” and bring it back to regular speed.  I also had an ablation due to a block in some of the nerves in the heart.

I honestly don’t know that the heart issues are totally related to Lyme.  Maybe the sudden increase in tachycardia was because the Lyme was affecting the problem that was already there, but I have since read many stories of people needing pacemakers and having ablations for the same kind of blockages that I had, and they have Lyme.  My heart issues are in the electrical part of the heart, not the plumbing part.  So, the jury is still out for me on this being Lyme related.  But, worth mentioning because of possible correlation.

The next few years (2004-2007) were full of the highest anxiety I have ever had or ever knew possible.  Being a new mother, having health issues, and now a device in my chest that could deliver a shock anytime was quite terrifying.  I had a big depression during these years, and thankfully my parents are extremely supportive and helped me through it.  We even had a period of time where we were living with my parents because I was afraid of being alone with the baby in case something happened.  Those were some dark days.

During that time, I was also having a LOT of pain in my lower belly.  My ovaries always felt swollen and painful.  I was having bad headaches/migraines cyclically (which I later figured out was during full moon and new moon), and sleep – well, I DIDN’T sleep.  I eventually had a hysterectomy.  The doctor had suspected possible Adenomyosis (cousin to Endometriosis), but was not able to confirm it even after testing.
I think the insomnia is Babesia.   Hormone issues?  Well, that is a combo of all this Lyme and co-infections after reading through the symptom lists.

The kicker?  The pain didn’t go away.  Any of it.

In constant pain, wrapped in a prayer shawl waiting for a miracle...

In constant pain, wrapped in a prayer shawl, waiting for a miracle…

In October of 2008, I had to go to the emergency room, because I couldn’t breathe.  My lungs felt like they couldn’t expand, and my breathing was shallow.  I had a nebulizer treatment, was put on… PREDNISONE and antibiotics, and sent home.  Did I mention that one of my lungs was partially collapsed?  Good times.

This went on for over a year.  Coughing, labored breathing, pulmonary function tests, allergy testing… everything inconclusive.  Antibiotics and Prednisone was the answer to everything.  I finally stopped taking all the garbage because it didn’t make these issues go away.  Eventually it faded away on its own.
I believe this whole thing was me suffering from Mycoplasma Pneumoniae, a co-infection of Lyme Disease.

In the meantime, I was still having pain in my ovaries, migraines that grew worse as the years went on, and anxiety and insomnia.  Added to the stress was that Ivan was also having a lot of symptoms, and Poppy was demonstrating traits of Autism.  That is a whole different story, but needless to say, life was not fun, easy, or enjoyable during these years.  I tried to be positive, but this all got the best of me for a long time.

It was also discovered that my thyroid crapped out.  I get to be on meds for that for the rest of my life.  Joy.

In 2012, I went to North Carolina by airplane to see a friend.  I was sick and had a migraine for 24 hours after getting there.  Looking back, anytime I travel by plane or car, I get sick for the first 24 hours.  Planes are particularly bad for me.

In 2013, I had an episode of swollen glands in my armpit.  I have since read that this is a Bartonella symptom.

As you can read, this has not been an easy road.  This disease has taken so much from me in the last 18 years, and by the grace of God, in 2013 we were led to a naturopath that eventually figured out that our whole family has this and needs to be treated.  I don’t know where we would be today if we had not seen her (to talk about Autism!)…

I tried talking to my regular doctor about Lyme after seeing the naturopath, but she was cruel about it, really.  But that is a memory I would rather not share here because many of you know the experience of a disbelieving doctor first hand.

If you are a regular reader, you know that I started the first phase of treatment in December of 2013, by modifying my diet, getting more rest, balancing my hormones, learning how to detox my body, and preparing for the phase of treatment where we would go after these bugs/bacteria.  I didn’t start the killing phase until just a few months ago, but all the prep work was worth it.  This disease is not a “30 days and you’re cured” kind of thing – no matter what your family doctor that you trust and love tells you.

Many of you know what people go through to get a proper diagnosis, so to have a doctor mention this first was amazing.  I honestly had no clue that all of us were suffering from this.  I thought each of my medical problems were isolated and unrelated.

So here I am, 18 years later, and a whole lot wiser.  We are all on the path to remission, thanks to perseverance, education, and a damn good Lyme doctor on our side.

We have been through many treatments at this point.  I don’t think there is one treatment that will work for everyone.  I think that getting Lyme into remission is a combination of many treatments, and when you feel that you have plateaued on one, it is time to move to another.  One of the biggest and most important facets of treatment is to try to stay positive.  I am not big on in-person “support” groups – people tend to be very sad and angry at these things, and that is not a good environment when fighting this.  I have a couple Lyme buddies, and we share war stories, but we stay on the path of remission together.

That is my Lyme story.  I cut out some of the graphic details, but you get the idea, right?  Chances are you are walking the same path right now, or you are being blown off by doctors and specialists.  I hope that you are led to a good Lyme doctor that you can partner up with and start treating this.

Please feel free to contact me if you need help or have questions (scroll down for the contact form).  I don’t wish this disease on anyone, and if I can help you have a shorter road than we have had, then I am happy to help.

Please feel free to share this post with someone that you suspect may be going through medical problems that are being misdiagnosed or blown off by doctors.  This disease is spreading, and over 300K people per year are diagnosed.  Now add all the people that are misdiagnosed?  That is a LOT of people.  It is in all 50 states, contrary to what the CDC will have you believe.  I have met people that contracted this in downtown San Diego.  It is everywhere.

Field Trip Friday – Overlook Park

Overlook Park – This is a view of Lake Miramar, one of the reservoirs in San Diego.  These pics were taken a few weeks ago for a play date.  There is a play structure, and a pavilion for some shade.  You can walk around the reservoir, which is a few miles around.
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Treatment Tuesday ~ Stress / Anxiety

I think many of us, chronic illness or not, can relate to having periods of anxiety and stress in our lives.  I have always had anxiety issues, but it was when I was a teenager that it was through.the.roof.  It didn’t go away, and followed me around for years.

A few years ago, I finally agreed to go on a prescription medication.  I didn’t take it every day, only when the anxiety was climbing, but I hated taking it.

A couple years ago, I had some blood tests done, and realized that some of my issues were related to my adrenals and cortisol levels.  The naturopath I was working with at the time suggested a couple supplements that I still use, and they have really helped to keep the stress chemicals down in my body.
20150616_111037Stress Calm Px by Restorative Formulations – this is a supplement that I get through the naturopath directly.  I am not sure of other sources.  From their website:  “This herbal formula supports a sense of calm and preserves optimal central nervous system function. It contains adaptogenic herbs to assist with stress management. Can help promote clarity and mental alertness.”

Seriphos by InterPlexus – I get this on Amazon.com.  From their website:  “Seriphos has an impact on stress by providing adrenal relief. Each capsule yields about 90 mg of the active molecule: Phosphorylated Serine.”

20150616_111011I have also added essential oils to my routine, depending on how I am feeling.

Lemon – I put a couple drops in my water, which helps the body’s detox process.  When I am detoxing efficiently, I feel much better, which of course helps keep stress down.

Serenity – This is an oil blend.  When I do feel anxious, I put a drop on the bottom of each of my feet, and it really helps my stress level come down.  Plus, I love the way it smells.  This is also a great oil to diffuse at bedtime, as it is very calming and helps with falling asleep.

InTune – We all use this oil daily on the back of the neck.  It helps to stay focused (great for my men that have diagnosed attention issues) and when focus is good, it keeps the anxiety down.

Balance – I love this oil.  Smells woodsy, but also helps me stay grounded.  This oil is the first one I ever used, and within a few days I was able to go off prescription anxiety medication.  It was truly a miracle for me.  I put this on the bottom of my feet after my shower every day.

Lavender – After a stressful day, there is nothing like an Epsom Salt bath with a couple drops of lavender to calm me down.  I have also diffused this during the day when we could benefit from some calm – like during full and new moon.

I purchase my oils here.

Of course, other things that help reduce stress include eating a healthy diet, exercising, and getting plenty of rest.  I know that we all know that, but it really does help.

Paying attention to mental health is important, too.  Please reach out to a therapist if you need help.  If you are feeling suicidal, call the National Suicide Prevention Lifeline at 1-800-273-8255 or click the website: Suicide Prevention Lifeline.

Every good thing you do for yourself will add up to emotional and physical wellness.

Thankful Thursday

Yesterday was one of “those days” that we all have on occasion.  It was the kind of day that would make one say, “I should have stayed in bed.”

WaveI belong to an “Autism Mom” support group, and a couple weeks ago a few of us planned a dinner date so we could all chat, laugh, and hang out.  I am thankful that last night was the night we went out to dinner.  Turns out, we were all having one of “those days.”

So, my post today is small, but important to me.  It was great to feel a part of a community, and be able to talk about some of the issues going on, and help each other solve them.  I feel inspired and renewed because of these women.